Learning to Breathe

New Painting

2012-01-24T23:40:00.000-08:00

Having one of those days

2012-01-04T16:25:00.000-08:00

Maybe it is because the first part of my vacation is over or because I have been penting up my emotions, but I'm having a rough afternoon and feel like I'm going to start crying at any moment. I'm pretty sure that is not what the couple in 7b and c had in mind for their trip to LA. But there is a kid crying behind me, so maybe I'll just blend in.

Anyway, Florida was great. I really enjoyed spending time with Tom and exploring south Florida. He kept me pretty busy, but also let me sleep in, which is pretty important to me these days. Physically I feel better. I really think that being exposed to all of the sun is good for me.

While I was in Florida my wedding anniversary passed. I cried a little, but mostly tried to stay distracted. It's hard though, if I sit still for too long, my mind starts to race and it is filled with lots of sadness, anxiety, and fear. I have a lot on my mind and just a lot of issues up in the air.

I've tried to be okay with the idea of taking care of myself as my "job," but on many days that is not working. I am tired of my life being on hold, but also terrified of having to make big decisions. Sometimes I think that I could have done all of this if Gess was by my side, but he isn't. And I'm not sure that I can do this, or even if I want to. Of course I'll do what I always do: put on my big girl panties and go through the motions. I'll do what is expected of me and what I should do. And I'll try to do it without completely losing it. But for right now, on this bumpy airplane ride I am going to feel sad and wallow.

Florida For Christmas

2011-12-26T06:32:00.000-08:00

And it's about 80 degrees :)

2011-12-11T23:52:00.001-08:00

I've been thinking a lot about all of the losses I've experienced lately and it's pretty overwhelming. But today I was reminded that I survived this last year. I survived. It wasn't pretty, but I made it. There were times when I was sure that the pain of grief would kill me, but it didn't. I made it through my diagnosis and 7 months of treatment. I'm not completely on the other side of either of these journeys, but I am on that road.

I had a great time today laughing with friends. I've made new friends this year and for that I am extremely grateful. My friends are who are going to help get me through this.

I know that the next few weeks will be difficult with Christmas, New Years, and our anniversary, but I also know that I can get through it. Which is sometimes enough.

Photo Card

2011-12-09T19:01:00.001-08:00

Retro Ornaments Red Christmas

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Finished with Radiation

2011-11-30T22:07:00.001-08:00

I finished radiation today and I know that I should be happy, no ecstatic, that I made it through another treatment step. But today has been one of the worst days that I've had in awhile. I cried through my entire treatment, wishing so much that my husband was there with me. That I didn't have to make that trek to treatment everyday alone or at least that I didn't have to sit in an empty apartment every night. I do have amazing friends and do not want to trivialize the great support that they have been, but at the end of the day I there is a loneliness in my soul that I can't shake. I ache for Gessner, for his touch, for his voice, for his love. He loved me so much and I just want that back. No matter how hard things got, we always had each other and our love. I know that it is cliche, but at the end of the day, love is enough sometimes.

"They" say that grieving takes at least a year. A year is a nice round time and lets you go through every season and most major events. It is logical that if you get through the first year of grief (or anything really), that you will be okay. But I don't feel okay. Right now I don't feel better than I did this time last year. Right now I want to bury my head in the blankets and scream. I want my husband to come back and anything besides him coming back is not an acceptable existence for me. I don't want this life. I don't want to go through another year like this without him. I don't want to be without him. I am tired of trying to "make the most of it" and hope that it will get better. I've had a year of it and I can say, that it hasn't gotten better. My life is not better than it was a year ago. It's actually worse. On top of not having my husband, I have cancer. I have no breasts. My body is mutilated and ugly. I don't have a job and I feel like my career is slipping away. I have lost friends. And I can't move forward because I am stuck in cancer-treatment.

I am so tired of being this person who is sad and complaining. I don't want to be negative or whiny, but I feel like I am at a breaking point where I cannot take any more of this. Or that I don't want to. It is a like a business doing a cost-benefit analysis. Right now the costs are outweighing the benefits of life. And the worst part about it is I feel so helpless to change anything. I know old saying (and clever flow chart) about "if you are unhappy, make a different choice," but I don't know how to do that (and I'm really not looking for advice on how to do it because there isn't anything that I haven't thought of...I'm just using my blog to get this stuff out of my head).

I hope that most of this is just because I do not feel good at all. I'm at the end of a treatment cycle, which means that I am about as beat up as I am going to get. They are giving me a break so that my body can recover. I think that I might have a bug or my body might be trying to fight one or something. As my friend said today, I've heard that cancer and cancer treatment make you feel like shit. Yep, it can.

The Pressure to Be Positive

2011-11-14T20:37:00.001-08:00

In our society there is an incredible pressure to have a positive attitude, especially for people who are dealing with illness or loss. I can't count the number of time that news of my loss or my health have been followed by the words "but at least..." and then some attempt to put a silver lining on my situation. Some of them have been incredibly insensitive, like "at least you don't have kids" or "at least you are young so you can start over" and all of them have the effect of trivializing the pain I am going through. I know that people do not intend to be harmful, in fact, they likely think that their platitudes are helpful, but that doesn't mean that they are not hurtful. One girl told me that I should watch The Secret and it would change my life. I've read the book and so I guess her message to me was that if I believed that I didn't have cancer, I wouldn't or that I attracted cancer to myself. Let's not even think about what The Secret's answer would be to Gess's death.

I agree that it is harmful to have a negative attitude all of the time. For illnesses and cancer particularly, there is evidence that feelings of hopelessness correlate with poorer outcomes. I am a big proponent for trying to find hope in life or at least for the day, especially when life is hard. But, that doesn't mean that you have to be happy and positive all of the time. Life is not all positive and pretending that it is does not make it so.

I am a widow and I have cancer. That sucks. Period. No way around it. And I should not feel compelled to act positive about it all of the time. In fact, if I start acting positive all of the time, you should be concerned. At the same time, I can have good days (and yes, I've had people actually respond negatively to me when I said I was doing well). There are ups and there are downs. There are days when I feel so sick that it is a struggle to get out of bed. And then there are days when I feel pretty good and try to have a little fun. There are days when I am positive about my prognosis and there are days when I am negative about my prognosis. This is life. And you know what? It's perfect normal to have both of these types of days, especially when you are dealing with issues like cancer and widowhood.

So, the next time you find yourself trying to offer a friend the "bright side" when he or she is talking about a rough patch, resist the urge and offer a hug instead.

The Stages of Grief

2011-11-08T22:51:00.000-08:00

The Kubler-Ross model of grief describes it in five stages: denial, anger, bargaining, depression, and acceptance. These stages aren't necessarily experienced chronologically, but I can say that I have experienced all of them. And all of them more than once. They aren't distinct states, exclusive of each other either, they meld together and are often intertwined. I think that there is a common idea, as well that grief takes one year and that once that magic one year mark passed, the grieving is over and it is time to move on. I can tell you that one year is not a magic mark. No lights went on and I did not suddenly feel better. If anything, I am feeling worse these days than I had recently.

Today I found myself in the bargaining phase again...a phase that I have always been uncomfortable with and one that I never believed that I would actually experience. I always that it was strange to try to change things by promising to do something or not do something. But, tonight I found myself saying that I would do anything to have my husband back. It was bargaining at my best--but of course there is no sense in that. And when I realize that I fall into the despair of hopelessness again. Perhaps that is the depression stage beginning anew.

Very alone

2011-11-07T00:28:00.000-08:00

There are days when I feel very lonely, days like today. I realize that I have friends and I don't want to dismiss them, but my soul is lonely. And I realize that it is going to be this way for a long time because I am alone and am not exactly a catch right now. I had my love and my partner. I had my chance. Now I'm sick and alone, and I feel like I'm destined to stay this way.

It's been a year...

2011-11-02T23:44:00.001-07:00

...a missing you every day.

A medical team that works

2011-10-31T21:19:00.000-07:00

It is no secret that Gessner and I had many struggles with our medical teams throughout his life. It seemed like the clinic systems we visited were so broken in so many ways and we found ourselves fighting to get the care the we thought was necessary. I have many, many examples of times when that medical system failed Gessner, including failures that put his life in danger. My experience with the medical system was stained by trauma and a seemingly adversarial process.

So, when I was diagnosed with cancer and knew that I would be interacting with a medical team on a regular basis, I was nearly as scared of that prospect as I was of the cancer itself. I remember having so much anxiety related to talking to my surgeon about my decision regarding surgery--I was afraid that he was going to disagree with me and that I was going to have to fight for myself. This was not because of anything my surgeon said or did, but rather because of my experience with Gessner's CF-related care.

My cancer team has been amazing and I think that my story is an example of how medical care can and should work. It gives me hope that for future patients and support networks. I hope to take what I have learned in this journey and advocate for changes to the CF care paradigm, at least as it relates to care of adults with CF. Of course, I have to focus on surviving myself right now, but I am excited about the possibility of sparking some change in the CF community.

One of the things that makes my team so amazing is so very simple and fundamental: The doctors interact with each other. I have many different practitioners on my team, each with his or her own specialty. My doctors actual read the notes from each other and if appropriate, speak with each other about my care. This seems so basic, but it is quite the opposite of what I experienced with Gessner. We would often show up to an appointment with a new specialist only to be asked why we were visiting, with the doctor knowing next to nothing about Gessner's situation. Thankfully we were informed and usually knew why we were seeing a particular specialist, but I am sure that is not always the case. When Gessner was evaluated for a lung transplant, his team of doctors did sit down and speak, but I know that more discussions could have been useful at other times. I understand that logistics and sheer volume of patients can make this different, but it is critical that the doctors who are caring for a patient work together and to do that, there must be good communication.

Today I received a telephone call from one of my doctors to check in with me since I had missed our appointment last week. But before she called she looked at the notes in my file and saw that I was having a lot of problems with nausea. So, when she called, she already knew some of what was going on. The fact that she 1) called to check on me and 2) took the steps to investigate before calling amazed me, again, because of my prior experience. This communicated to me that my doctor actually cares about me and my well-being and that she has an active role in my care. Again, I know that there are a lot of reasons that this sort of thing might not happen in other arenas, but I think that it is something that should happen, especially when someone is dealing with a serious, life-threatening disease.

I love my cancer team and find that working with them is helping me heal from some of the trauma of my prior experiences. Too bad I had to get cancer to do this, but for today, that will be my silver lining.

That call

2011-10-31T00:11:00.000-07:00

A year ago today I got a call from the hospital. I had stayed with Gessner overnight and his father came to the hospital in the morning to take over so that I could get a bit of sleep at home. I went home, showered, and got into bed. Just as I had fallen asleep, my phone rang and it was my father-in-law, saying that Gessner's doctor wanted to talk to me. I felt like someone had kicked me in the stomach. Dr. T. wouldn't call and wake me up if it wasn't something serious. And it was a Sunday morning, so again, it had to be something serious. I got up and made my way back to the hospital--a seven miles that I could drive in my sleep.

When I arrived at the hospital the nurse paged Dr. T. to let him know that I was there. Tom and I exchanged pleasantries, both knowing that something bad was happening, but neither wanting to voice it. Perhaps if we didn't say what we were thinking, it wouldn't be true.

Dr. T and one of his interns came to the room and walked Tom and I down a long, long hallway to a "family conference room." It was a small room with mismatched furniture thrown in. A small sofa on one side of the room and a round table with stiff, classroom-style chairs. There was a book shelf with nutrition books and pamphlets, along with plastic replicas of food, likely used to counsel patients on the nutritional components of diabetes. The room was beige and bland, unremarkable in all aspects, but because of what happened next, the image will be forever etched into my memory.

Dr. T motioned for us to sit down, so Tom and I sat in two chairs facing the door. Dr. T and the intern took chairs opposite us. A heavy pause, and then the news. Gessner is not getting better, his kidneys are starting to fail, he cannot remain on the vent for much longer, with each day that passes the chances of him getting off of the vent are smaller. We ask how long. A week at most. I felt like vomiting. I tried to hold back my tears and ask the necessary questions. Dr. T. ended by telling us that he had to go out of town for a conference but that he would be in touch with the new attending and would be back on Tuesday. He assured me that the new attending physician was good would be able to get in touch with him if anything changed.

I thanked Dr. T and the intern for their time and then we walked out of the room, back to Gessner's room. As I walked back into his room I tried to keep my tears in check, not wanting to signal any distress to Gessner if he could tell what was going on. I held his hand and told him I loved him, begging him in my heart to keep fighting.

Tough Pills to Swallow

2011-10-29T00:34:00.000-07:00

For some reason I am having a really difficult time with this chemo that I am on right now. It is supposed to be a "mild" or "easy" chemo, especially compared to what I have been through all ready. I take it orally, twice a day for one week and then have one week off, and then start over. I am doing this while doing radiation (which is 5 days a week M-F for 7 weeks) because the chemo drug enhances the radiation. So, it is a two-fer...I get the chemo for systemic treatment and enhanced targeted treatment with the radiation.

Unfortunately I am having side effects from this drug. Mostly nausea. I started to type "just nausea" but anyone who has had prolonged periods of nausea knows that it is not a "just" type of deal. It really bites. You feel like you shouldn't move, because movement makes you feel worse and might trigger vomiting. You don't want to eat, because that makes you feel more nauseous, but if you don't eat you can get headaches or feel weak. I take anti-nausea medication and that helps some, but I still feel pretty crappy right now. And on this round, the crappy feeling started right with the first dose. My doctor has already reduced my dose once because of the side effects during the first round, so I don't know if we can reduce them again. And I don't know if we would want to. Obviously I hate feeling sick, but I also need the medications to work and kill all of the cancer so that I can eventually move on with my life. I don't want to whine too much about the side effects or refuse to take the drugs because of them if I need them.

I am not sure if it is just because of the side effects or if it is also because of my overall exhaustion with the whole cancer deal, but every time it is time for me to take my dose I want to cry. I have to do mental gymnastics to get myself to 1) eat so that I can take the meds, 2) pick up the damn bottle, and finally 3) take the meds. I feel like such a wimp for struggling so much with this "easy" treatment, but I admit that it is taking a toll on me. I still have a month left of radiation, 21 more treatments to be exact, so I'll have 2 or 3 more rounds of the chemo. Then I am also supposed to take this chemo with two other drugs for about 3 months. My oncologist says that I get a break between radiation and the start of the new chemo, but I don't know if I will continue to take the Xeloda through the "break."

There isn't much to do except put on my big girl panties, try to keep the side effects in check, and take the fucking medication. But it doesn't mean that I have to like it. Or that I am not going to want to cry before each dose.

2011-10-27T20:36:00.000-07:00

I'm listening to The Time Traveler's Wife by Audrey Niffeneggar on my iPod. I read the book a long time ago when it first came out and I loved it. I remember reading it while Gessner was in the hospital and crying. A nurse walked in and saw me crying, assuming that it was because of Gessner being in the hospital, and tried to comfort me. I'm nearing the end of the book and just listened to the letter that Henry left for Clare to be read after his death and I felt Gessner with me, saying that had he written me a letter, it would have read something like that. That he too, wants me to be free and that he would have stayed with me if he could. I wish that he could have stayed with me.

Before he died Gessner told me that he was going to write letters to people he loved to be read after his death, but apparently he did not get around to it as I have been through all of his things and did not find any letters. At times I am angry. I wanted him to write me a letter to tell me all of these things--to tell me that he loved me, that I was a good wife, that he didn't want to leave me, that I would be okay. I don't know why he didn't write the letter. Probably because it was too hard to think about and he didn't think that his death was so near. Or maybe he thought that he would be able to tell me these things at the end, not that he would be non-responsive and just slip away. I feel selfish when I am angry about this because no one should have to plan their death and I'm glad that he lived it as much as he could instead of dwelling on it. Perhaps I want a letter from him so much that I am clinging on to this quote from the book. But, at any rate, tonight I heard Gessner say that it was for me. So here are excerpts from the book:

A Letter to Be Opened in the Event of My Death

...

About this death of mine—I hope it was simple and clean and unambiguous. I hope it didn’t create too much fuss. I’m sorry. (This reads like a suicide note. Strange.) But you know: you know that if I could have stayed, if I could have gone on, that I would have clutched every second: whatever it was, this death, you know that it came and took me, like a child carried away by goblins.

Clare, I want to tell you, again, I love you. Our love has been the thread through the labyrinth, the net under the high-wire walker, the only real thing in this strange life of mine that I could ever trust. Tonight I feel that my love for you has more density in this world than I do, myself: as though it could linger on after me and surround you, keep you, hold you.

I hate to think of you waiting. I know that you have been waiting for me all your life, always uncertain of how long this patch of waiting would be. Ten minutes, ten days. A month. What an uncertain husband I have been, Clare, like a sailor, Odysseus alone and buffeted by tall waves, sometimes wily and sometimes just a plaything of the gods. Please, Clare. When I am dead. Stop waiting and be free. Of me—put me deep inside you and then go out in the world and live. Love the world and yourself in it, move through it as though it offers no resistance, as though the world is your natural element.

...

If I had to live on without you I know I could not do it. But I hope, I have this vision of you walking unencumbered, with your shining hair in the sun. I have not seen this with my eyes, but only with my imagination, that makes pictures, that always wanted to paint you, shining; but I hope that this vision will be true, anyway.

...

We will see each other again, Clare. Until then, live, fully, present in the world, which is so beautiful. It’s dark, now, and I am very tired. I love you, always. Time is nothing.
Henry

Excerpts from The Time Traveler's Wife by Audrey Niffenegger.

Paul "Q" Mooney

2011-10-27T16:48:00.000-07:00

Today would have been the Paul's 46th birthday. He passed away on December 5, 2009 from complications related to cystic fibrosis. I love Paul. We used to chat nearly every day. He used to make me laugh because he would never start a chat session with a "hello" or other greeting. Usually it was something question about the meaning of life or something about sports (hockey and cycling in particular). We had a lot of serious discussions, but also a lot of fun too. We talked a lot about CF and relationships. Sometimes I felt badly because he could tell how difficult Gess's illness was on me and it confirmed the feelings that he had about relationship and CF. I think that he and Gessner were a lot alike. Gessner loved Paul too and had started to chat with him more frequently right before he died. When Paul died I was devastated for myself and also for Gess because he had really opened up to Paul, and then also for the whole CF community because Paul touched so many people.

One thing that I really appreciated about Paul was his honesty and frankness about CF and about life. We talked about death and the realities of the disease. Some of the conversations were pretty heavy, but it was so nice to have a person who I could talk to about that stuff. I don't have anyone else like that in my life. I wish that I had him now because I know that he wouldn't just try to make me feel "okay" about having cancer. He would be honest and open with me when I voiced my fears and the realities of my diagnosis and prognosis. He wouldn't try to force me to find the silver lining. But at the same time, he knew what it meant to fight and to prepare to fight. He would have stood with me in this battle and would have supported me through any of my decisions with no judgment.

Paul was also am amazingly talented writer and musician. I am listening to his music right now and can't help smiling and crying at the same time. While he was preparing for his lung transplant he would send me clips of the songs that he was working on--some serious and some incredibly funny. Music was a great outlet for him. His family had his music recorded after his death. You can listen to his music here and buy his CD here. He also encouraged me to start writing again. When I was younger I wrote a lot, but during college and law school I didn't have time for personal writing, but Paul really pushed me back into it and for that I am very thankful. I will finish my book someday and dedicate it to him and Gessner.

Paul's family has started the Cystic Dreams Fund in his name to help adults with cystic fibrosis. It's a great charity and has already helped provide much needed financial assistance to some adults with CF. I am going to make a donation today in honor of Paul's birthday. If you would like to learn more about the foundation or make a donation, visit the Cystic Dreams Fund's website.

Paul, Q, chum, my friend. I miss you every day. You enriched my life in ways that I cannot adequately express. You left a huge hole in the community when you left. Fly my friend.

One step forward three steps back

2011-10-25T00:00:00.000-07:00

This year has been a huge lesson in taking one step at a time and on some days it feels like I am stumbling backward and losing ground. The grief has been overwhelming lately, particularly at night. I'm sure that this is normal, but at the same time it is disheartening to feel like I am not much further along than I was a year ago. Actually I was better a year ago. I was living in a time when my husband was still alive and I had no idea that his days were so numbered. My cancer had also not reared it's ugly head. I was incredibly stressed out at the time because Gess wasn't feeling well and we were preparing for a move. At the time I thought things couldn't get much worse and now I'd give anything to go back there.

I don't know how to live this "new" life--if that is what you can call it. I don't know how to navigate this life. I feel like it's an accomplishment to just make it through the end of the day. This from a woman who used to consider herself to be strong, dependable, and capable. From an attorney who had big dreams and plans to make them come true. Now, I'm only a shell of the person I once was, going through the motions of life, living day-to-day because anymore than that is too overwhelming and the future is so uncertain.

I think that the uncertainty is one of the hardest things for me. I've always hated uncertainty and tried to find something in my life that I could control or at least have some hold on it. Right now I have neither. A friend said it well today. She said God took away her husband and then took away her hair and then her breasts. And I'll add that her took my life. My friends don't want to hear me say that because they think that I'll bounce back and be okay. They don't want to hear that I still may die from this disease or that my soul may never recover from this. They want me to move on and find happiness because they love me. But when I'm honest with myself I'm not sure that is ever going to happen. My fight is waning and the uncharted territory ahead is daunting. So for tonight, I will take a Xanax, breath in and breath out, and try not to think about tomorrow.

A year ago

2011-10-21T23:00:00.000-07:00

A year ago Gessner had a TIPS procedure performed and it went very badly. They ended up piercing his liver and he lost a lot of blood. It was horrible. They had to give him a lot of blood and when I was finally able to see him, he was so swollen that he skin looked and felt like plastic. His doctor told me to go home and try to get some sleep and to come back in the morning, when they would try to get Gess off of the vent.

I went home and finally fell asleep, only to be awakened by my phone ringing. It was the hospital and I immediately felt my heart stop. Generally it is very bad news when the hospital calls at 4 o'clock in the morning. I answered the phone and it was Gessner's ICU nurse. "He's off the vent and asking for you," she said and then handed him the phone. I immediately started to cry and told Gessner that I loved him. The first thing he said was "I'm so sorry that the surgery took so long." The man nearly died in the OR and he was apologizing because I had to wait so long. It makes me smile, because that was the type of guy that he was; the type that thought about other people, especially me.

I rushed to the hospital and was amazed to see a different person. He looked like himself, though still a little swollen from receiving so much blood and fluid during the procedure. But mentally he was completely himself. When his doctor came in to check on him, Gess voiced disappointment because he wanted to go back to work the following week. Dr. T told him that he could go back to work soon. Later he snuck out of the ICU to get a root beer float and some how got the doctor to discharge him that day. He went from nearly dead to home in less than 24 hours.

This kind of "bounce back" was why his death came as such a shock. He was the ultimate come-back kid. He beat the odds. He was a miracle. And then it all ended. I wish that I had known on that day that we would have less than 2 weeks together. I wish that we would have spent that time doing something amazing rather than preparing to move. I wish it would have been different.

2011-10-21T01:03:00.000-07:00

I can't sleep tonight--which really isn't anything new. Every time I try to close my eyes I see Gessner's face and start to cry. For some reason I keep remembering scenes from the days before Gess died. Particularly I keep thinking about times when he was freaking out and I was able to calm him down. One night he was having a horrible time breathing and was literally gasping for air, despite being on 02. I remember crouching down on the floor and forcing him to look at me and he breathing would ease a little. Then later when he was on the vent, he would occasionally wake up and he had the look of terror in his eyes, but as soon as he saw me, his face and body would relax. Sometimes he would even try to smile at me and sign "I love you."

I felt helpless so much during our marriage because I couldn't make him better. I couldn't fix his CF and I couldn't take away the pain. But these memories make me feel like I was able to help a little and that he knew that I was there with him through the end. It's small, but I have to hang on to those little things.

Still can't believe I don't have boobs!

2011-10-20T22:47:00.000-07:00

A thought just occurred to me: I don't have boobs! It is so freaking weird. That's it.

He could always make me smile

2011-10-19T23:34:00.000-07:00

One thing about Gessner was that he was just a big kid at heart. He loved to make people smile and laugh. Just about everyone who met him had a great story to tell about him. I have so many. I need to start writing them all down!

Here is one of the best pictures of Gess. We were a part of a group of friends, affectionately called The Ballard Mafia (Ballard is the neighborhood that we live in). We also happen to be friends with an amazing photographer (Clane Gessel) and he did a group photo shoot at the Olympic Sculpture Garden. As part of the shoot, we decided to wear ugly Christmas sweaters. We scoured the thrift stores for the best and Gess chose this too small vest and turtleneck!

A year ago

2011-10-19T19:59:00.001-07:00

A year ago we were getting Gessner ready for a procedure on his liver. We were getting ready for his father and step mom to visit. We were worried about the procedure because it was risky, but I never would have believed that he would be dead in 2 short weeks. How could that even happen? Cystic fibrosis sucks and it can take someone in an instant. My husband was healthier than many people with CF that I know and then one bad turn and he was gone. Even though it's been nearly a year, I am still in shock at times. I still look around and wonder where he is. I wonder when he is going to come home. I wake up and temporarily forget that he is gone. Those days are getting fewer, but they are still there. I miss you honey and would give anything to have you back.

Survival Mode

2011-10-17T00:30:00.000-07:00

I was out walking Beauty and thought to myself "Whew, I survived another weekend" and realized that I am constantly thinking in terms of survival. Not in a life-and-death physical way, but in an emotional, mental way. By an objective standard my weekend was pretty good. I had dinner with a friend from college on Friday night, pedicures with new friends on Saturday, and breakfast with a different friend from college on Sunday morning. Add to that, naps, reading, french lessons, delicious garlic chicken pizza, and decent weather and it would seem to be quite a good series of days. But all of these are clouded by the emptiness I feel, with not only losing Gessner, but losing a lot of myself. There are days when I look in the mirror and do not even recognize the person looking back at me. When did I become this empty shell? I canceled a photo shoot today with an amazing photographer (Clane Gessel) because I am scared to see what I actually look like through a lens.

I'm so broken and don't know how to even begin to repair or heal. Everyone says that it will happen, that it will take time, etc., but I really wonder if I can make it. It's been almost a year since Gessner died--11 months, 14 days, 4 hours, and 7 minutes to be more precise--but it still feels like it can't be true. I can't be a widow. I just can't. I can't do this without him and honestly I don't want to. I never thought that I would be a person that would say something like that--I always considered myself to be so independent, but right now it just hurts too much and I have nothing left to fight for. I am so tired of just surviving and fighting through every day.

And I can't say this to anyone. Because if I do, they worry about me or try to make me feel better. I look at the pain in my friends' eyes when they see me cry and it breaks my heart. I hate that I hurt people just by being alive and there isn't a way to not hurt them. But I'm selfish and I want them. I don't want to be alone. But in reality I am alone. I am surviving, but just barely.

2011-09-25T21:11:00.000-07:00

Here is a poem I picked up somewhere along the way that is comforting to me at times. I do think about Gessner often and even talk to him. I miss him every single day.

Henry Scott-Holland, 1847-1918, Canon of St. Paul's Cathedral

Death is nothing at all

I have only slipped away into the next room

I am I and you are you

Whatever we were to each other

That we are still

Call me by my old familiar name

Speak to me in the easy way you always used

Put no difference into your ton

Wear no forced air of solemnity or sorrow

Laugh as we always laughed at the little jokes we always enjoyed together

Play, smile, think of me, pray for me

Let my name be ever the household word that it always was

Let it be spoken without effort

Without the ghost of a shadow in it

Life means all that it ever meant

It is the same as it ever was

There is absolute unbroken continuity

What is death but a negligible accident?

Why should I be out of mind?

Because I am out of sight?

I am waiting for you for an interval

Somewhere very near

Just around the corner

All is well

Nothing is past; nothing is lost

One brief moment and all will be as it was before

How we shall laugh at the trouble of parting when we meet again!

Preparing to Live or Preparing to Die

2011-09-21T21:31:00.000-07:00

This has been a rough week. I can't stop thinking about the possibility of having Stage 4 cancer and what that means. Well, or at least what I think that it means. Even if it is stage 4 there is no guarantee that I will die soon, it is even possible that I can be "cured" (with cancer you are considered "cured" if you are "cancer free" for 5 years). But, if I am stage 4, the odds are against me. So, what is a girl supposed to do? Should I start making a bucket list and doing those things? Should I spend all of my money traveling and doing things that I want to do? Or should I plan for a future? The reality is that for now I am in a sort of limbo and have to just wait and see. I will wake up in the morning and go to bed at night. I will take each day as it comes and just try to make it through one day at a time. As cliche as that sounds, it is the only way that I can get through this right now. Perhaps I will get some guidance from the doctors at some point or my body will tell me what is going on. So for tonight I accept that there is nothing that I can do about this and I'll pick up the battle tomorrow.

Update

2011-09-19T20:59:00.000-07:00

Well, it's been just over a month since I had my bilateral mastectomy. The surgery went well and I am actually feeling really good physically right now. Probably because Gertrude is no longer trying to suck the life out of me and the doctors are not giving me regular doses of poison. My wounds are not healing as quickly as we would like, however, so radiation has been pushed back a couple of times. The soonest I will start is in 2 weeks, but my guess is that it will be longer. While I enjoy having days when I feel good and don't have to do treatment, with each day that I wait, the end date of active treatment is pushed back. I was hoping that I would be done by the end of the year, but after talking to my oncologist today, it is looking like February will be the earliest.

As soon as my chest wounds heal up I will start radiation along with an oral chemotherapy agent. I will do radiation 5 days a week for 33 treatments and will take the oral chemo every day one week on and then one week off. After radiation, I will start additional chemotherapy, adding two IV agents to the oral one. The IVs will be two weeks on, one week off for about 3 months.

The big wild card in all of this is a spot on my rib. Before I started chemo the first time I had a PET scan to check to see if there was cancer anywhere else in my body. The scan showed a spot on one of my left ribs. To give the doctors a better look I had an MRI, which was inconclusive. I had been skiing a few weeks before and had fallen A LOT (it was my first time) and so we thought that it was possible that it was a bruised or fractured. So, I did chemo and had surgery and then we did another scan and the spot is still there.

I had an MRI on September 9th and the report states: "Signal abnormality and surrounding edema persist in the left anterior third rib. Given the persistence of this finding and the bone scan abnormalities and the time, the possibility of metastatic disease to the rib is very real. I would have expected the healing process to have substantially resolved during this time, and the signal abnormality within the medullary portion of the rib is worrisome." What this means is that the cancer may have spread to my rib, but we aren't sure. One of the problems with this is that there is no easy way to test to see if it is cancer. In order to take a biopsy, I would have to have surgery. And right now, surgery would not be good for me because it would further put off treatment. Also, the treatment would be the same if we did find out that it is cancer--we are going to radiate the area and hope that it goes away.

The hard part for me is that if this spot is cancer, then I have Stage 4 cancer and that is very difficult to cure. I asked my oncologist point blank this afternoon if I was going to make it out of this alive and he said that there are no guarantees, but that he is encouraged by the surgical findings. He said that if it is Stage 4 we may not be able to cure it but that I might still live for several years. Cancer is considered "cured" when you are cancer-free for 5 years. I really do hate not knowing if this rib thing is cancer or not, but surgery just isn't a good option now. And I'm not sure how I would deal with that information if it came back as cancer for sure. I've been able to fight, in part because it seemed likely that I would be cured. When I was first diagnosed, we thought that I was Stage 2, which has a good survival rate. Now we know for sure that I am Stage 3 and possibly Stage 4. I know that these are only numbers and I shouldn't focus on them, but it is hard.

I'll have another scan after radiation, so we'll have some more information about the rib then. But for now I just have to wait and hope that it is not cancer or that if it is I can still beat this. I told my oncologist that I am going to be pissed if I went through all of this and still died and he said that he will be too. I am thankful to have so many people pulling for me and to be in really good hands.

Changing

2011-09-11T23:15:00.000-07:00

I find myself changing in so many ways. I wonder if my friends can see it. Of course there are the obvious physical changes. From my signature long, blonde, curly hair, to peach fuzz and from DD to nothing...those are obvious changes and you would have to be blind not to notice them! Some are more subtle--the lumps under my arms, near my back where the incisions have pushed tissue together in an unnatural way. The swelling that is subtle, but annoying. The gnarly incisions that sometimes peek out of the top of my shirt. The mastectomy camis (that are so unfashionable) that I wear to house my drains (and those drains that hang around my midsection. I'm having a harder time with the physical changes than I had anticipated. Perhaps because before I would have had Gessner by my said tell me that he loves me know matter what and that I am beautiful to him. I'd have a hard time thinking that even he could find this mess attractive, but would take solace in knowing the his love for me was unconditional. I do wonder if he saw me on the street today if he would recognize me. My hope is that my face was so ingrained in his memory that he could never forget me. But at the same time, I feel so disfigured that I don't how anyone could look at me with love.

Before I really didn't care much about how I looked. I wore clothes that were comfortable and go the job done, but really didn't think in terms of fashion. Now I am obsessed with fashion and want to be stylish--in my own quirky way. I yearn to have a sense of style all my own and own clothes that fit that style and that fit me--the real me, not just the physical me, but the essence of me. Perhaps it is because I never really had time to think about this before or because I always thought that it was a bit self-centered and vain that I didn't do this year ago. But for whatever reason, I long to find my style and own it. The irony, of course, is that I look worse than I ever have and so the chances of me actually achieving any of this are slim to none.

There is also a part of me that wants me than I have ever wanted before. I think that deep down I wanted these things when Gess was alive, but my need to care for him overrode those wants. Some of the wants we shared, but I think that we both knew that they would never come true. We knew that we were dreaming beyond Gessner's lifetime, but there was some comfort in that. I wanted to believe that we would be old, sitting on rocking chairs on our porch together so much. A times I think that I thought that if I believed it enough it would come true. But of course, deep down I knew that it wouldn't come true. But now, the world is open to me. Or, at least the world was open to me before my cancer diagnosis. I am not sure how I should feel about this one--if I should just assume that the cancer is a bum in the road and I will be able to go on with my life as soon as I get through these hoops or if I should believe that I am not going to make it and put my affairs in order?

Part of me wants to make a big move--do something BIG and take a chance. While another part of me wants to find a corporate job and maybe get on the partner track and finish what I started.

I am so young and have so much life ahead of me--assuming that cancer doesn't take me out--and I feel such heavy responsibility for the decisions that I will be making in the coming months. Cancer will eventually finished with me--with me being in remission or dead--and I need to prepare for that. I need to try to figure out what my next steps are going to be. But honestly, I don't know how. I am so used to having another person to help me make big decisions and to be my cheerleader once those decisions had been made. Gessner was an amazing cheerleader. I still remember the look on his face when I got the phone call about my first job as an attorney. He looked like a guy on a game show who had just won the biggest prize with his eyes wide open and is mouth agape in an amazing smile. His arms were wide open, waiting to embrace me and I think that he may have even jumped up a little. Right in the middle of the eye glasses store. Now I am on my own and have to cheer for myself. I know that true validation needs to come from inside, but it certainly does help to have someone on the outside to help you along.

Big changes are coming and I'm very scared. I feel like a failure in life and that I am floating around with no life vest.

Happy Birthday Dad

2011-09-11T00:23:00.000-07:00

Today would have been my dad's birthday. Miss you!

The Beach

2011-09-10T22:57:00.000-07:00

I love the beach, especially the Washington and Oregon coasts. I'm not a sunbather (I burn so easily), but there is something about the sound of the waves and the way the sand feels against your feet. The Washington and Oregon coasts are different from other beaches that I have been too. The Pacific Ocean is fierce and the water is cold. I think of these beaches in terms of fleece and fires as opposed to bikinis and crowds.

This weekend I decided to get away to Ocean Shores, Washington. I chose this location because it is close and there were available hotels for last minute reservations. It is relatively quiet here. I'm not sure if I would prefer to be in a quiet place or in a big crowd. Every place feels lonely to some extent, simply because Gessner is not here. I wonder how long that will last.

Today I ended up spending a lot of time in my hotel room because I had a headache. But I did get out in time to see the sunset at the beach and I'll admit, it was quite beautiful. The walk on the beach was bittersweet. I loved feeling the sand under my feet and the cold water rush up around my ankles. I love the smell in the air and taste of salt on my lips. But I missed having Gessner's hand to hold and missed hearing his laugh. The last time we were here we had a great time, just hanging out and laughing. We rented a moped and drove it down the beach. We built a fire at night and made smores and drank wine on the beach. Gess and I often took little trips like that--he was so spontaneous and really drew me out of my comfort zone to just get out. I am so thankful for that. He lived more in his 33 years than some people live in 50-60 years.

This picture is for your babe!

Ten Months

2011-09-03T09:52:00.001-07:00

10 months ago yesterday I had to make that decision that no wife wants to make and instructed the doctors to take my husband off of the ventilator. I know that it was the right decision--his body was shutting down and he wasn't going to get better. But there is still a part of me that wonders if something would have changed if I gave him just a little more time. Gessner was always the "comeback kid." A couple weeks before he nearly died during a procedure and he was up ready to get out of the hospital the very next day. He was always beating the odds and surprising everyone. What if he just needed a little more time to comeback? I actually felt like he was already gone, at least his spirit was, but I can't shakes these doubts.

This week a friend asked me if it gets easier as time passes. For me, it hasn't. It is just different. I still hope that I am in the middle of some horrible nightmare and that I will wake up and find him in bed next to me. I still have nightmares about his death and I still plead with whomever is in charge to let him come back. I hope that it will eventually get easier--and I am sure that it will. But for right now, it is still horrible.

Emotional Mess

2011-09-01T12:25:00.000-07:00

I have been an emotional mess the last week or so. I am exhausted from everything and am so tired of fighting. I have heard so many times recently that I am a "trooper" or an "inspiration" and I just don't get it. I feel like such a failure most of the time and am so tired of putting on the happy face. If I let people know that I am not doing well, it hurts them, so it is easier to just say that I am okay and cry alone. But, honestly, I am not really okay. I miss Gessner so much at times that I feel like I am suffocating. I cry every time I look at my chest and feel like I have been mutilated. The thought of going through more cancer treatment nearly causes a panic attack every time I think about it. And I am scared of what my future holds. I am scared that I am not going to be able to find a job when I am done with this and that I am not going to be able to make it without Gessner.

Pathology Report

2011-08-23T10:03:00.000-07:00

After surgery, my doctors sent my tumor and breasts to a lab to be analyzed. I got the results yesterday. Here are some details from the report:

--80% of my tumor was dead tissue! This is great, considering how large the tumor had gotten (9.7 cm, or about 4 inches).

--Out of the 15 nodes they took out of my right arm, only one was positive for cancer and that was only microscopic.

--My left breast and left sentinel node were completely clear

--The cancer had spread into my chest wall, so that is the bad news. But, I was already slated for radiation, so that will take care of that.

My oncologist was very happy with this report. I will be meeting with my surgeon tomorrow (Wednesday) and the radiation oncologist on Thursday. The three of them will discuss the situation and come up with a recommended plan of action. I'll see my oncologist next week and then as soon as I'm healed from the surgery, I'll go onto the next step.

I am so relieved that this was good news. I really needed it this time. I've had too much bad news for awhile.

Bilateral Mastectomy

2011-08-22T12:22:00.000-07:00

I was diagnosed with breast cancer on April 13, 2011 and it has been a crazy, hectic ride since then. A lot of women with breast cancer have surgery very soon after diagnosis. In fact, my first cancer-specific appointment was with a breast surgeon. In my case, we decided that chemotherapy first was appropriate, so I was sent to a medical oncologist. After my course of chemo, we waited for 3 weeks for my body to heal before surgery.

I checked in to the hospital at 5:30 am the morning of my surgery (August 16th). I was anxious and was told my the nurse not to take my anti-anxiety medication that morning because the anesthesiologist did not want me to. (I told the anesthesiologist this and she said that I should have taken my anti-anxiety medication and said that she would look into why I was told not to take it). Anyway, I checked in, accompanied by my father-in-law (Tom) and my good friend Sandy. The receptionists where a bit on the slow side and the nurse came out to get me before I was fully checked in. After the paperwork was filled out, I was taken back to the pre-pre-surgery room. I could have one visitor with me at a time so Sandy sat with me and Tom sat in a little waiting room right next to us. I answered a bunch of questions about medications and why I was there and then changed into the fabulously unfashionable hospital garb. Tom came in for awhile too and we basically waited.

Eventually they took me back to the pre-surgery area and Sandy came with me, while Tom went back to main waiting room in the hospital lobby. The waiting in the pre-op area was the worst, but Sandy tried to keep me at ease with humor and she mostly succeeded. It was hard to be there without Gessner sitting beside me, but I really tried not to think about that. The anesthesiologist came to chat with me and ask some questions and answer any of mine. The only thing I asked is how my eyes might get injured (it was a warning on the anesthesia consent form) and I'm pretty sure she had never gotten that question before. (The answer was that if your eyes opened for any reason something could get in them, so they usually use tape to keep them shut). She was very nice and encouraging. My breast surgeon also came over and chatted briefly as did one of the nurses who would be in the OR.

I was in the OR at 7:30 am and they got me on the table and the next thing I know I was wake up in recovery.

I actually don't remember a lot about the hours after recovery, but that means they gave me the appropriate drugs :)

What a difference a year can make

2011-08-12T21:10:00.001-07:00

This summer has been difficult for me. Not just because of the cancer (though that has definitely been a challenge), but also because I keep thinking about what we were doing this time last year. I think of last summer as the beginning of the end. Of course, at the time I didn't think that it was the end, I thought that it was just a bump in the always bumpy CF road.

In July we went to Colorado to visit Gessner's family. He was too sick to go and I tried to convince him to postpone the trip, but he insisted. He said that he wanted to make sure to see his grandmother in case something were to happen to her. It makes me wonder if he knew or felt something, but I don't think that he did. I think that if he did he would have done more "wrapping things up." Anyway...we went to Colorado and had a good visit with his family, including celebrating our niece's birthday.

(Gess and Hannah posing with tutus and tiaras)

But, Gess's health did not do well and he ended up in the hospital. It was scary to be in a hospital in a smaller city, with doctors that have no clue about CF. Gessner's oxygen saturation levels were way too low. He had to wear oxygen 24/7 while we were there. (Gess wearing 02)

After we got back to Seattle, Gess continued to use o2 much more frequently than he had before. It wasn't quite 24/7, but he needed frequently. He stopped working, which was HUGE for him. Gessner loved to work and worked way more than I wanted him to. I think that part of it was to prove that he could do it in spite of CF and to prove all of those people who said that he wouldn't live to be an adult wrong. And man did he prove that! He was an amazing man and did so much in his short life.

The reason for him taking time off from work was because he started the lung transplant evaluation process, which requires a lot of tests and appointments. I was actually a bit surprised when he decided that he wanted a lung transplant. He always said that he didn't know if he would want one or not, but I always felt that he wouldn't want to go through it. I'm not sure why, it was just a gut feeling. But, when the time came, he didn't want to live like he was living with the increased limitations, so transplant was his only option for going back to a more "normal" life. His lungs were not bad enough for a lung transplant under normal circumstances, but he had liver involvement too, so it changed the landscape a bit.

As we went through the transplant process I started to have hope that he would get better and I certainly didn't think that in a few short months he would be gone. I keep going over and over those months in my mind and looking for something that I could have done differently. What if I didn't let him go to Colorado? Would that have made a difference? Was I nice enough to him and supportive enough? Did I give him enough of myself? Did I make him happy? I know that there was nothing that I could do, but I can't stop these thoughts. Or the flashbacks and nightmares. I wish that I could.

In less than a week...

2011-08-10T11:24:00.000-07:00

In less than a week I will have no breasts. I just can't quite wrap my head around this. I know that it is necessary--I want this cancer out of my body now--but I am scared of the after effects. I have done pretty well without having hair for the last couple of months, but now we are talking about body parts. And body parts that are viewed as "essential" parts of being female. I know that I will still be a woman without my breasts and that I will eventually have reconstruction, but I am not sure how I am going to deal with the emotional upheaval that is sure to follow.

I feel so broken right now. I am 33 years old and am a widow, a cancer patient, have no hair, will be permanent disfigured after my surgery on Tuesday, no career. In sum, I'm damaged goods.

Getting out of here!

2011-08-04T08:47:00.001-07:00

I am being discharged from the hospital today--yay! I am so happy to be going home. I have been here from 3 days and that was long enough for me. I can't imagine the long stays that my CF friends have to do--but I guess you do what you have to.

I am still pretty anemic, so my oncologist gave me the option of staying for another day and getting a blood transfusion. He also said that we could take a look at my labs in a few days and then do a transfusion on an outpatient basis at that point. I decided to take the outpatient route. He said that the main issue I might have is being tired. And then because I have surgery coming up, I want to make sure that everything is okay for that. I am going to call my surgeon and discuss the issue and then get a transfusion next week if necessary. In the meantime, I guess I'll have a steak and spinach for dinner :)

Surgery is only 12 days away and I'm feeling a bit anxious about that. It is going to be so strange to wake up with no breasts. But I am ready to get this tumor out of me. I'm sure I'll have more rambling thoughts about this in the future.

Hospital

2011-08-03T10:06:00.000-07:00

I am currently admitted in the hospital. This is my first "real" hospital stay--the only other one being a one night recovery stay after my emergency gall bladder removal. I also spent countless nights as a "visitor" in the hospital, but it is quite a different experience when you are the person in the bed.

Chemotherapy--particularly the regimen I am on--can wipe out a body's white blood cells. Part of the job of WBC is to help the body fight off infection. In order to help boost WBC, I get a shot of neulesta to help my body rebuild its WBC. With the first 3 doses of AC, this was sufficient. For the fourth and final dose, apparently not.

On Sunday I started to feel pretty crappy, so I just hung out at home and took it easy. On Monday morning I had to go to see my oncologist and I started to feel increasingly sick during the drive from home to the clinic. By the time I got there I felt awful. Apparently I looked awful too because the IV nurse suggested leaving my port accessed in case the oncologist wanted to order fluids (normally I would have been deaccessed immediately because I wasn't getting treatment). I vomited twice before I was able to see the doctor, again, not a good sign. By the time I got back to see the oncologist, his face said it all and I knew before he opened his mouth that I would not be going home. My WBC were too low--near zero--and he was afraid that I had an infection. I had a fever and also had lost 6 pounds in 6 days (which would normally be cause for celebration for me, but I wasn't trying and didn't even know).

Before I knew it, I was wheeled into room 801 and put in a fashion-deficient gown. It hit me that the last time I had been in a hospital room was 9 months ago when Gessner died. Even though this was a different hospital, I couldn't stop the tears and I spent my first few minutes of my admission crying. The nurse came in and I felt compelled to explain. He was very understanding and sympathetic, which I appreciated. I pulled myself together and answered all of the questions and let the nurses get me settled in. They started IV fluids and the doctor ordered IV antibiotics. They took me down for a chest xray and drew blood for blood cultures. These are all of the same tests and procedures that Gess went through when he was admitted--although much more efficiently and competently here.

My first night in was okay--I slept intermittently and had some weird dreams, but it wasn't too bad. The first full day was mind-numbingly boring, but I didn't feel much like doing anything and couldn't even muster the energy to waste hours on the internet. I did start to get restless and found myself arranging and picking up in the hospital room. Gessner used to do this with some regularity and I really never understood his need and seemingly intense drive to do this. But now I completely understand it. At some point after sitting in the bed doing nothing you just have to get up and do something productive--anything productive, even if that means restacking reading materials and folding your socks.

All of these little reminders of Gessner and flashes of his mannerisms and routines make me feel like he is here with me. There have been times when I have been pretty angry that he is not here to go through this with me and times when the same thought makes me very, very sad. But when I have these glimpses of him I find some comfort in feeling that he IS here with me or that all of the years of hospital stays with him readied me for specifically for this. It makes me feel a little less lonely and a little less afraid.

Personal Disease Perspectives--Blogger Challenge

2011-07-28T21:00:00.000-07:00

My friend Piper just posted a blogger challenge on disease perspectives and I decided to chime in from the perspective of a spouse of someone with CF and also as a cancer patient. Here's Piper's challenge and full post. Here is her specific challenge:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog. She also opened it up to non-CFers, which is where I come in

Life as a CF wife

It was hard watching my husband struggle with CF and the issue of "compliance" was often a prickly one. There were times when I would get really upset with Gessner for not doing his treatments and there were times when I wondered if he would less sick if he was more diligent about treatments. He worked too much and sometimes took chances with his health. He fought with his doctors and sometimes pushed the envelope. It was frustrating to watch and honesty it scared me. But it also let him live. He chose the terms of his life as much as he could. He chose what he saw as a "quality" of life at the expense of treatments sometimes. Other people might disagree with those decisions, but the bottom line was that it was his decision and so it was the right decision for him. I do wonder if he would still be here if he had been more "complaint" or more conservative. But, that wouldn't have been Gessner and that wasn't the way that he wanted to live.

I think that each person has to figure out the balance that works for him or her individually. For some, it is doing everything possible to try to be compliant and follow doctor's orders to the letter. For others, it is less strict and is more about making the rules. Neither is right or wrong--each person has to do what is right for them and I think that doctors, family members, and friends need to respect those decisions. I know that it is hard because as witnesses to people suffering from this disease, we feel so helpless and pushing compliance is a way that we can feel more in control. But the bottom line is that there are no guarantees with CF and everyone has to make the most of out life, whatever that means to that person individually.

As a cancer patient

It's quite strange to go from being a caretaker and wife of a person with CF to a cancer patient in just a few months. Experts guess that cancer is lurking at least 5 years before it shows up, so I have had it for some time, but we never had any clue. One of the most difficult things for me to hear from people is that they are not surprised that I have cancer after what I have been through. I understand where that thought comes from--there is evidence that stress and particularly feelings of helplessness can contribute to cancer--but at the same time it makes me feel like people think that I caused my cancer or let it happen to me. Yes, I have not been the most healthy, but I am freaking 33 years old and I just can't accept that this disease is my fault.

I have been a pretty compliant patient, but have not done everything possible to fight this. I still eat sugar and meat. I had someone recommend that a fast for weeks--I'm not doing that. I haven't done any juicing yet. But I do listen to my oncologist and do my treatments. I walk and do my exercises. I see a variety of therapists and I try to listen to my body. I sleep when I feel like I need to and am getting better at asking for help. Am I the perfect patient? Probably not. But, I am doing what I can and doing it the best that I know how. Will it be enough to beat this? No one knows, but I hope so. Should I be judged for not doing more? Nope. All anyone can do is what he or she decides is best. You can consult the experts, but at the end of the day the decisions have to be right for you. Sometimes that means bucking the system. Other times it means toeing the line. Most of the time, it is probably somewhere in between.

I have been fortunate to have a support system and care team that supports me completely and I do not feel judged for my decisions. I feel like I am taking advantage of the expertise and programs available, but also trying to manage my life and still have one in spite of a cancer diagnosis.

Sunday Traditions

2011-07-24T22:18:00.000-07:00

Sundays have always been a day of traditions. When I was a kid, it was always church, a "Nazarene nap," choir practice, and more church. When I met Gessner we adapted our traditions a little. At first it was church and then Olive Garden for lunch. After we got married, we went through a phase were we spent Sundays in bed after church, watching movies, ordering pizza, and just relaxing. More recently, a typical Sunday included brunch and a visit the farmers market in our neighborhood. Sundays were usually a day we spent together relaxing in preparation for the start of the work week. I loved our Sundays together and looked forward to them.

Now, I feel a little lost on Sundays. I don't have a routine and my old routines make me a little sad. This morning I woke up with an overwhelming sense of sadness and dread. It was another Sunday without Gessner. Fortunately a friend invited me to go to the farmers market with her family and I ended up having a decent day. I cried a little and laughed a lot. I got some advice from a "witch doctor" on how to treat my cancer and I took a nice nap. Now I am sitting at home watching a movie and trying not to think about chemo tomorrow or my upcoming surgery or the fact that I am sitting her alone. I know that it will get better in time, but right now Sundays are really difficult.

Surgery Scheduled

2011-07-21T21:44:00.000-07:00

I was so nervous about going to the consult with my surgeon today. I had already decided what I thought was the right choice for me surgery wise and for some reason I was nervous that the doctor would fight with me about it. I know that this comes from the years that I spent fighting with doctors for Gessner and his health. I tried to tell myself that the surgeon had not given me any reason to think that he would not support my choices and my experience with the entire cancer team and hospital has been wonderful, but I was still very anxious. My good friend Sandy came with me for support.

The appointment went very well and there was nothing to be anxious about. A lumpectomy was not an option because my tumor is actually bigger than it was when I was first diagnosed. A lumpectomy was only a possibility if they were able to shrink the tumor. So, having a total mastectomy of the affected breast (the right one) was the surgeon's recommendation. He was also very supportive of my decision to have the left one removed as well. He understood my fear about another cancer in that breast and also the just the logistics of reconstruction, etc. I am a DD, so having only one breast until reconstruction would leave me pretty lopsided.

I am relieved that it went so smoothly and we are all on the same page. Surgery is scheduled for August 16th. The procedure will last a couple of hours and I will probably stay just one night in the hospital. They will have me up and moving around right away and doing range of motion exercises to make sure that my shoulders do not get locked up. I will have two drains placed to keep fluid from accumulating near the incisions. I will have to keep those in for about two weeks. I will have to restrict my upper body activity--no lifting, vacuuming, that sort of thing, but can otherwise be active. It will take about 6 weeks to be fully recovered.

During the surgery they will remove a number of lymph nodes on my right side and biopsy the sentinel node on the left side. I originally thought that I would have the sentinel node biopsy on the right as well but the surgeon prefers to remove the nodes because of the size of my tumor and the aggressiveness of it. They will test the nodes and whether or not there are signs of cancer will help dictate further treatment. They will also run pathology on Gertrude (the tumor) and that too will help determine if I will need radiation and/or additional chemotherapy. It takes about a week for those additional results. If additional treatment is necessary, I will have to wait about 6 weeks to fully heal from the surgery.

Then there is reconstruction. Sometimes they are able to do immediate reconstruction, but I am not a candidate for that because I may need additional treatment. The surgeon estimated that I will have to wait for about a year for reconstruction. It might be sooner if I don't need additional treatment. This gives me time to research plastic surgeons and procedures.

I'm relieved to have this scheduled and a bit nervous about the prospect of surgery. But actually I think that the surgery is going to be a lot easier than chemo has been. Plus, it will be really nice to have this tumor out! It has been growing at least in its outer dimensions. Right now it is nearly 10 cm (and I started out around 5 cm). The doctors are hopeful that the inside of the tumor is mostly dead and just the outer ring remains cancerous, but they won't know this until they take the tumor out. It has also been hurting, with increasing pain over the last couple of days. I am starting to have some limits to my range of motion with my right arm because of the tumor and the pain. So, it is time for Gertrude to go. Her eviction notice has been served and in less than a month, she's outta here!

I have my last chemo treatment on July 25th (this coming Monday) and then I will be taking a short vacation to Hawaii before surgery. All my doctors think that it is a wonderful idea! I'm hoping to relax and find some distractions. It sounds better than sitting around waiting for surgery (we have to wait a few weeks after chemo before surgery to allow my body to heal and my blood counts to return to normal).

2011-07-19T19:33:00.000-07:00

This week has been a bit difficult for me. I've been so tired and have had never ending headaches. We aren't sure what is causing the headaches, but it seems to cycle with the chemo, so it is likely a side effect of that chemo or the nulesta shot. The brain scan was clear so it is NOT a tumor, so that is definitely good news. I had acupuncture today which helped a lot, so I have a little relief.

I miss Gessner so much right now--it is really hard. I am lonely and just want to have him hold me.

I know that it will be okay, but these days are just rough.

Cancer update

2011-07-13T19:51:00.000-07:00

I was diagnosed with breast cancer exactly 3 months ago. Wow, so much has happened in such a short time! I had my 3rd round of AC on Monday and doing pretty well so far this week. I've been fatigued, but not quite as badly as I was after the last dose. Hopefully that will continue, but I am trying to take it easy. I only have one more round, which will happen on July 25! I can't wait to be done with this stage!

My oncologist ordered one more breast MRI and a brain MRI. I had the breast MRI today (#4 in 3 months!). I got to look at my scan and it looks like the tumor is about the same size as it was when I was first diagnosed. The means that it has shrunk since the last MRI, but also means that overall it has not shrunk much if at all. Of course, I am not a radiologist and am just guessing based on my what the MRI film looks like--we'll get the report in the next couple of days and know for sure.

I'll have the brain MRI tomorrow. The oncologist ordered it because I have been having a lot of headaches and he wants to make sure that the cancer has not metastasized to my brain. He says that it is unlikely, but he wants to be thorough. I am glad, though I am not thrilled about another MRI. I think that after this MRI, my ankles and toes are the only body parts that haven't been scanned!

After we get these scan results back, it will be time to meet with surgeons. I have met with one surgeon so far, when I was first diagnosed. At that point we decided that we should try chemo to shrink the tumor down. Again, on my guess, the tumor has not shrunk at all or at least not enough to make a difference. I do have one more round of chemo, so more shrinkage could happen. But, at the same time, I will have to wait for about 3-6 weeks after my last chemo dose before surgery, so my tumor could grow more (it grew during my 3 weeks on Taxol before). Who really knows!

I have thought a lot about what I want to do surgery wise and have done a lot of research. I have decided that I want to have a bilateral mastectomy, getting rid of both the cancerous breast and the other one. There is research supporting this decision based on my age and the type of cancer I have, but there is also research that would support a less aggressive treatment. For me, it comes down to not wanting to worry about recurrence and to keep my chances of that as low as possible. My tumor has proven itself to be aggressive and recurrence rates are generally measured in a per-year risk, meaning that my risk over my lifetime may be significant--or at least more significant than I am willing to risk. The anxiety and stress that worrying about it is not something that I want to have to deal with. I have thought about this for 3 months and done a lot of research and feel that this is the right decision for me. So, unless the surgeon has some powerful information to change my mind, that is what my plan is. I do plan on having reconstruction as well, though it will likely not be immediate. These surgeries are scary to me and will be a lot of work and recovery, but it seems like the right choice for me under the circumstances.

I am anxious to talk to the surgeon and get things set up, but am worried about all that is ahead of me as well. It is unclear whether I will need radiation or additional chemo after surgery. So, my mantra is one breath at a time.

Fun memories

2011-07-12T08:35:00.000-07:00

I found myself talking a lot about Gessner yesterday. First at the cancer institute while I was there for chemo and the various appointments that are associated with that and then with a friend. She played a voice mail message that she had on her phone from him, trying to plan a belated birthday party for me. Unfortunately we never got to have that party, but he was sure excited about it. We both ended up in tears at that point, but the happy-sad type that aren't so bad.

Here are a couple of great stories (in my opinion at least) that I have about Gess from our early days together.

One weekend after we first started to flirt seriously I went out of town with my girlfriends and we took a long horseback ride that resulted in my getting pretty sunburned. When I got back to the dorms after our trip, I found several messages from Gess and called him back. We talked for awhile and I recounted the details of my trip, including my sunburn and he said that he had something that worked great on sunburns that he could bring to me. So we said that we would meet up in front of the chapel on campus. I went as I was--in plaid, Dr. Seuss boxer shorts and an old purple t-shirt from a campus event at my previous college. I probably didn't have any makeup on (I rarely wore it) and wore my hair down. I arrived at the chapel and waited and waited and waited for what seemed like an eternity. Finally I could see him walking down the sidewalk toward me. As he approached I noticed that he took much more care in getting ready for our meetup. His hair looked wet and freshly combed. I could smell a new application of cologne and see that his clothes were much less casual than mine--nice jeans with a polo shirt tucked into them and a leather jacket. Oops! I guess we had different ideas about what the meeting was for :) He gave me a bottle of solarcaine and we walked around campus a bit.

During one part of our walk he accidentally stepped right into the sprinkles (you see, I think that all of this proves just how smitten he was with me). I laughed, of course, and in retribution he picked me up and carried me into the sprinkles (I was much skinnier back then!). We laughed and he eventually walked me back to my dorm.

I ended up getting a cold and was sick the next day. When he found out he sent flowers to me. They were in a red M&M "vase" and had a pack stuck to them. The flowers were an assortment of reds and yellows and the card said "Get Well and Sorry for getting you sick last night"--though I am sure that getting me wet had nothing to do with the cold. But, suffice it to say, I was pretty smitten too.

A few weeks later we were "studying" in a small restaurant on campus with some other acquaintances. We were eating stuff like french fries and nachos and drinking soda and occasionally working on homework. Gess and I were sitting next to each other, of course--and at one point Gess says to me, "Hey Lisa, look." So I turned my head and to look at him as he takes an empty Pepsi can and attempts to smash it using his forehead. The can did not crush, however, and instead cuts him in two places! The entire table started laughing and he made some remark about how he had done it a thousand times before. I'm still not sure why he thought crushing a can on his forehead would impress me, but I am positive that the failed attempt had a better result than if he had succeeded. For some reason I thought that it was cute and to this day, 14 years later, I smile every time I think about that night.

I miss this guy so much, but am so grateful to have so many happy (and crazy memories)!

Baby Steps

2011-07-05T22:51:00.001-07:00

Today is the first day since my second round of AC (Adriamycin and Cytoxan) that I feel pretty good and have been able to get a bit done. Today my professional organizer extraordinaire Kammie came over and worked on getting this apartment in shape. It's amazing what a mess I can make when I am sick! I decided to work with an organizer after I moved into the new place and had to scale back to a much smaller place and deal with Gessner's stuff, etc. In a wave of self-care, I hired Kammie to come over once a week and help out with house stuff and organizing. It feels so self-indulgent, but I am finally admitting that I actually need help and Kammie is amazing at her job, so I think that it is a win-win situation.

Even with feeling better, I still don't feel great and dread my next chemo treatment. So I am reminding myself that I am taking baby steps. Each day, a little further. So, here's to baby steps...and great professional help!

Fourth of July

2011-07-04T15:34:00.000-07:00

I try not to think about my life with Gessner with regrets. There is nothing that I can do now to change how things happened and reliving my "mistakes" or "missteps" just hurts. But there are times when that is hard and today I find myself regretting that I didn't embrace his love of fireworks and the 4th more. For some reason Gessner loved the 4th and fireworks. I'm sure that there is not a person that knew him well as a child who does not have a story about him involving fireworks. On one of my first trips to Colorado with Gessner he and his friend Tim spent the evening shooting roman candles at each other. I was terrified. I also remember driving through Wyoming on our way back to college and stopping at a fireworks stand in the middle of winter. We always stopped when we went to South Carolina and he would spend more money buying explosives than I liked.

I remember one 4th we went to Virginia to visit his stepmom's family. He brought a bunch of "big" fireworks with him and we sweltered in the Virginia heat while we watched the guys set them off over the water. Another 4th we went to a concert in the park in Winston-Salem where the symphony played and then the grand fireworks were choreographed to the music. It was just Gess, his dad, and me and we melted in the heat and had to deal with people everywhere. It was okay. Still, I would have preferred to stay at home in my air-conditioned apartment, enjoying the semi-quiet.

After we moved to Seattle I started to be less amenable to 4th festivities. I am not sure why--I don't like fireworks, they scare me and I don't deal well with crowds. I was always so nervous and decided that it would be more fun for both of us if he went out with his friends alone. Now I wish that I would have shared those days with him or made more of a compromise since he loved them so much. But maybe it was best--he could have fun with his friends and set things on fire, and I could feel safe in the quiet of my own home. I don't know. This is why I try not to question the past. It happened the way it did and there's no way to change it. But today I feel particularly sad, knowing that he loved this holiday the most and he isn't here to celebrate it.

Picture taken by Gessner

Hard round of chemo

2011-06-30T19:52:00.000-07:00

This round of chemo has been worse than the rest. Mostly I have just been exhausted. I have pretty much slept for 2 days straight. I don't like being so tired or feeling so sick, but I guess it is par for the course. Hopefully it means that the chemo is killing the cancer.

What little is left of my hair is falling out in clumps. I am glad that I shaved it so that the clumps are small, but it is still hard to see it.

I miss Gessner--seems like more each day. I thought that it was supposed to go the other way around with it getting easier as time passed. I feel so alone

New blog title

2011-06-29T00:00:00.000-07:00

Breathing is something that we rarely think about, unless we can't do it. "Breathe" is a common tag line for people affected by cystic fibrosis. In fact, I have a "breathe" tattoo that I got in honor of my husband last summer. My sister-in-law and a friend also got breathe tattoos at the same time for my husband.

Gessner thought a lot about breathing and I thought a lot about his breath as I would lay there awake watching him breathe in and out as he slept, watching his chest expand and contract, listening to the sound of his lungs taking in oxygen. I routinely listened to the depth of his breaths to gauge how he was feeling and to see if something was wrong. I'd hear him gasp for air when he was sick and needed oxygen. I'd listen for wheezing or shallow breaths and any change to his breathing pattern. At the end, a ventilator breathed for him and I would watch it as is pumped oxygen into his lungs. Every minute he would breathe an extra breath on his own--in my mind a tribute to his fighting nature. And then as the ventilator was removed, I watched as he took his last breaths. Slow and peaceful, to my great relief. I'll never forget those last breaths, the end of the body that held the love of my life. In a lot of ways, the end of my life.

I have a habit of holding my breath when I get anxious or nervous and sometimes even when I am working out. So, I need to be reminded to breathe sometimes. There are also times when I miss Gessner so much that I literally feel like I cannot breathe. He was my oxygen in so many ways, and now that he is gone, I have to find another source. I have been told by a couple of massage therapists that I do not know how to breath properly, referring to not breathing with my diaphragm or expelling all of the breath properly. I'm starting to think that they may be on to something. So, I am setting out to learn how to breath again. I'm sure that I knew how to do it properly at some time, likely before my life was overcome by stress and anxiety. I am learning to breathe without Gessner holding my hand and without a safety net. I am learning to breathe on my own.

It's a scary place to be, but I find that I have no choice. In the midst of a particularly rough night a friend reminded me that I don't really have any other choice but to put one foot in front of the other, day after day. And it's true. I don't have a lot of options, so for now I will breathe in and breathe out. Breathe in, breathe out. Go through one day at a time, making it through what I can and leaving the rest.

I'm reading Full Catastrophe Living by Jon Kabat-Zinn and will be working with a specialist to integrate the concepts into my life. This book describes the Mindfulness-Based Stressed Reduction Program that started at the University of Massachusetts Medical Center and is now used all over the country to help patients use meditation for healing. My cancer center has an 8-week mindfulness program that I may take in the future, but can't fit it in my crazy cancer treatment schedule right now.

I meet with one of the teachers of the class yesterday for a one-on-one session and we talked about mindfulness and how to be mindful and reduce stress. She hooked me up to a biofeedback machine and it was neat to physically see my muscles relax. I have a few more sessions scheduled with her to work on relaxation and stress relieve. I wish that I had done this earlier, but it's better late than never!

Chemo Number 5

2011-06-28T23:20:00.000-07:00

I had chemo yesterday. It was my 5th over all treatment, my second of the new treatment. Treatment days are long and yesterday was especially long. My appointment with my oncologist was scheduled for 1:20 pm and I didn't get home until around 8:00 pm. It doesn't always take quite that long, but the days are always pretty taxing.

The good news is that my oncologist is really happy with the way my tumor looks and he thinks that it has shrunk with the new chemo. I had noticed some positive changes, but wasn't sure how excited to be. He said that he was VERY happy with the results. I'll have either 2 or 4 more treatment, depending on the response. Then I will have surgery and maybe more chemo and/or radiation (again depending on what happens with the rest of this chemo and the results of surgery) and then reconstructive surgery. So, it is still going to be a long road, but I am moving along on the road.

Part of the reason that chemo days are so long is because there is just so much to do. First you get to the office, check in at the front desk and then get a lab slip. Then you go to the lab. For some reason the lab always seems to be backed up and it takes a long time there. The nurse accesses my port and then draws my blood.

After the blood draw I take the slip back to the front desk and wait for the nurse to call me back. The wait depends on the day, and yesterday wasn't too bad. The nurse takes my vitals and then checks on my meds and how the week went, etc. Next up, the oncologist. He comes in, checks on how everything went since my last treatment and then does a quick physical exam. Note to self from yesterday: this part is much easier if you don't wear a dress.

The oncologist checks blood results to make sure that I am healthy enough for chemo and then sends me to the infusion floor. The wait on the infusion floor always seems to take forever. Yesterday it was almost 2 hours--they were really behind for some reason.

When a chair is finally ready, they call you back and get your meds ready. First they give you a bunch of pre-meds, including anti-nausea medication and steroids. Those seem to take about an hour. The prize for this is a sack lunch :) Then they start the actual meds. One of my new meds has to be manually pushed and it is bright red. I try to just ignore it--though I feel badly about having the nurse sit right next to me and me complete ignore her. Yesterday I gave a quick explanation that "vegging" allowed me to get through it. I felt guilty, so finally turned off my movie and chatted with her during the second vial.

After the "red devil" (that's what they used to call this medication because of its horrible side effects), the nurse hung my second drug and I went back to my iPad.

Everything seemed to be fine until right at the end of the infusion, when I started to itch and break out in hives. To treat this, they gave my more steroids (of a different type but I can't remember which). Fortunately after two doses of the supplemental steroids, the hives were mostly gone and I was able to go home.

I came home to some beautiful floors an a stuffed puppy from my dog sitter. It was a very nice surprise after a tough day!

New Job

2011-06-26T23:11:00.000-07:00

My one and only job is to take care of myself and kick cancer's ass. I need to repeat this to myself multiple times a day and listen to my friends remind me about it too. You see, taking care of myself does not come naturally for me. In fact, it's a real struggle. My therapist asked me if I have always had trouble doing this and honestly I think that I have. Even as a child, I found myself looking out for my siblings and taking care of them. As an adult, I've gotten even worse. While I was married it was difficult to even think about taking care of myself because Gess's health required so much of my attention and energy. Even when things weren't that bad, I worried about when they would get bad again. I remember Gess trying to force me to relax by drawing me a bath, lighting some candles, and locking me in the bathroom! I know that my stress levels are unhealthy and that I need to address them, but for some reason it is so difficult for me to actually accomplish this.

Since Gessner died I haven't worked much--just a few cases and teaching a business law class. Since being diagnosed with cancer, I haven't done any official work. And it is driving me crazy! I am so used to doing, doing, doing, and the idea of resting makes me feel like a failure. I know that this is an issue that I am going to have to deal with--getting cancer does not make me a failure--but this is one of those times when my mind and my heart are not necessarily in agreement. So I have to trust the "experts" and my friends and focus on caring for myself right now. In that vein, I am writing a job description for my current job:

Lisa's Job Description:

Get enough sleep. Take naps if necessary.
Stay hydrated, drink lots of water.
Ask for help when I need it. Accept help when it is offered.
Say no.
Go to my appointments, but be mindful of over scheduling and only schedule what is necessary or enjoyable.
Laugh. Often.
Spend time with friends.
Cut out toxic people.
Move every day, but be careful not to over do it.
Remember to eat and eat for health.
Cry when I need to cry.
Get outside a little everyday.
Snuggle with Beauty.
Spend time each day meditating.
Get massages.
Craft whenever possible.
Take my vitamins.
Stay on top of my side effects--being "strong" doesn't mean suffering.
Listen to my body.
Do what feels right.
Delegate, delegate, delegate.
Revise job description as necessary.

This job may just be more challenging than any I've had in the past, but my health (and sanity) depend on me doing it well. So, here's to self-care!

Looking for hope

2011-06-25T15:56:00.000-07:00

One of the biggest things that I have struggled with since Gessner's death is finding some sort to hope to cling to and to look to for the future. To be brutally honest, most days I wish that I could just be where he is. (And before you get all worried--I am not suicidal and I've talked to my therapists about this and it's normal, etc.). Being a widow and working through the grief is hard. People tell me that it will get better. That I need to have hope for the future. But I have a lot of trouble with that. My life experience is that once you get through one difficult patch, there is another difficult patch waiting for you. So I have been stubbornly resisting buying into this idea that there is something good for me waiting at the other end of this journey. My grief counselor finally got me to agree to have a hope of a hope of a hope that there might be something good for me at the end. Yeah, I'm a stubborn one.

Enter breast cancer. I want to scream, "See, I told you that this is what happens!" I'm not even through the grief journey--really I'm just starting--and something else happened. And this is something big. So once again I am faced with a mountain sized obstacle--one that I cannot ignore, even if I wanted to. I remember the first few days after I was diagnosed, all I could do was cry. And with those tears I begged Gessner to bring me him. Maybe this was the grand plan after all, and he was just readying my place for our next life together. Perhaps I would be one of those spouses who died shortly after their partners and people would say that I died from a broken heart. If I could have chosen in those early days, I would have chosen that in a heart beat.

But eventually my stubborness kicked and in and I decided that after all I had made it through, breast cancer wasn't going to be the end of me--or at least not without a fight. And so the battle began. Lisa versus Gertrude. To the death. We're still in battle and neither seems to be giving an inch right now. But I have surgeons on my side that will cut her out. So, my chances are good. But only time will tell.

Even with this renewed "fight," I struggle to be hopeful and can't picture a good outcome. There are times when I have a generalized sense that things will be alright, but I can't visualize anything specific. I can't dream about future possibilities or play out different scenarios in my mind. This is a coping technique I've often used in the past to help me get through difficult times. When Gess was really sick, for example, I would visualize a trip that we would take when he felt better or during the middle of exams in law school, I would think about the life we might have once I graduated and was a practicing attorney. Those dreams are what made it possible to sludge through the mud and make it through each new challenge.

But now, when I need as much help as I can get, I can't dream of a good future. I have been frustrated by this inability and it didn't really make any sense to me. And then it hit me like a two-by-four across the forehead. I can't dream about a future because any future that I have does not involve Gessner. When that realization hit me, it felt like an "a-ha" moment and a "duh" moment at the same time. So simple, yet so profound.

The reason that I can't dream about my future is because my everything is wrapped up in Gessner and he is gone. And if I dream about a future that does not include him, I am accepting that he is really gone. I know that he wants me to be happy and to have an amazing future, I have no doubts about that whatsoever. But at the same time, the thought of being happy without him seems not only impossible, but also unnatural. I had my chance at happiness and now he is gone.

So, I know what my hang up is, but still have no idea on how to get past it. I asked my brother to think about his life and what he wanted it to look like and then identify what was standing in the way of him getting there. My therapist turned the question back on me and I can't answer it. I can't think of what I want my life to look like right now and one of the things that is standing in the way of me visualizing this is because I can't imagine my life without Gessner. So, maybe that's a start. I don't know. I don't know how to get to a point where I can visualize something concrete to fight for. It would certainly help me on those days when I just want to bow out of this fight. But as a friend told me recently, there is no graceful way to just give up and died. Breast cancer isn't like that. So for now, my only chance is to fight. Some days the fight comes easily, others I fight because I have no other option. Hope or no hope, I must get out of bed every day, breath in and out, and put one foot in front of the other.

2011-06-24T22:56:00.000-07:00

I still can't believe that Gessner is gone. I just reached for my phone to call him. Everyday there are things that I want to tell him and questions that I want to ask him. I wonder how long that is going to last. When is it actually going to set in that he is gone and that he is not coming back? Part of me never wants it to set in because that will mean that it really is real. But another part of me wants it to stop because every time it happens it hurts. I just miss him so much and need him right now.

Chemotherapy

2011-06-21T23:55:00.000-07:00

For most patients with breast cancer, the first step of treatment is surgery to remove the tumor. Then, depending on the specifics of the situation, adjuvant therapy is considered, including chemotherapy, radiation, and hormone therapy. In some cases, neo-adjuvant (meaning before surgery) chemotherapy is seen as a good option. My case is one of those. The biggest driving factor for neo-adjuvant chemo in my case was the size and location of the tumor. My tumor is rather large (around 6 cm now--think the size of a lemon) and is abutting my chest wall. My tumor is also considered triple negative, which means that it is not receptive to hormone therapy. So, by doing chemo first, the doctors hope to shrink the tumor which will make surgery easier (and may also give me the option of having breast conserving surgery if I want it) and will also tell the doctors which chemotherapy agents work for me.

My first dose of chemotherapy was on May 23, 2011. I wore my "chemo" shirt to keep myself in the right mindset (It says "Hey Cancer, You picked the wrong bitch"). The day started with a blood draw and then an appointment with the oncologist to make sure that everything was okay for the treatment. This actually took a lot of time and involved a lot of waiting around. Most of the hold up was because of a study that I was participating in.

Finally I went up to the infusion floor and waited some more. Eventually, a nurse called my name and took me back to the infusion suite. There are various private rooms as well as rows of chairs facing the window. You can request a particular type of location if you want, but because this was my first time, they put me in a private room and had a nurse with me for most of the treatment.

Before you get the actual chemotherapy, they treat you with a lot of pre-medications to help control the side effects, manage anxiety, and minimize allergic reactions. The pre-meds include steroids, benadryl, and anti-nausea medications. They offered me ativan for anxiety, but I was feeling okay, so declined. The pre-medications took about an hour and were fine. The benadryl made me sleepy, but I stayed awake, in part because my friend Eleanor was there and in part because I wanted to see what was happening.

After the pre-meds, they gave me the actual chemotherapy agents. For me, it was a drug called Taxol. The taxol infusion took about an hour. I ate a turkey sandwich and messed around on my iPad during the time.

Once the infusion was complete, the nurse checked my vital signs and deaccessed my port. And then I was free to go. The nurse was so sweet--she gave both me and Eleanor hugs and wished me luck.

My friend Russ came and picked me up and took me home. I felt decent, just really tired from the drugs. So I went home and took a nap. I survived the first treatment with flying colors.

Chemo treatments number 2 and 3 where pretty much the same and uneventful. I went to these appointments alone, as I prefer not to worry about how my friends are handling seeing me hooked up to the machines. I watch movies, listen to music, knit, read, or nap.

The original treatment plan was for me to do 12 rounds of Taxol. I had an MRI after my 3rd dose and the imaging showed that my tumor had actually grown during the weeks I was on Taxol. So, my oncologist suggested a change in treatment plan. This meant that I was not able to participate in the research study anymore, but the doctor thought that the change was necessary. On to plan B.

Going Bald

2011-06-21T23:16:00.000-07:00

I've known for awhile that my hair would fall out from the chemotherapy. It's pretty much a given with the regimen that I am on. And honestly, it was one of the biggest fears I had. I am not sure why I have such an emotional attachment to my hair, except that it was pretty awesome hair. And honestly, I think that it was my biggest distinguishing feature. Ask 100 people to say something about my physical features in one phrase and I'd bet the majority would be able my hair. It was beautiful. Long, naturally curly, and blonde (naturally when I was a kid and with a little help as I've gotten older). It's been called "golden." I've had random strangers ask to touch my hair. So the prospect of losing it was pretty frightening. Plus, it is a very outward sign of cancer. In most ways I don't look sick, but a girl with no hair--that alerts the general public to problems under the hood.

Once I found out that I was going to lose my hair I want to my favorite hair dresser and got a transition cute. He cut it short, especially in the back. And it looked really cute! So, I enjoyed the cute do for a few weeks.

Then I started to get little clumps of hair out when I washed it. My hair was thinning. I knew that it was only a matter of time before the clumps got bigger and honestly I couldn't deal with that. So, I went to my friend's house and she shaved me! She had a little fun with some punk-inspired styles during the shaving :)

I think that I may have jumped the gun a bit and with how thick my hair was I may have been able to keep some hair for a long time. But I think that this was a bit more about control and having some control over what is happening to me. I choose when to cut my hair, the cancer didn't choose it for me.

Surprisingly I don't hate my bald head. In fact, I walked around in public today quite a bit without any type of covering. I did wear a wig for a little bit, but I actually feel more self-conscious in that. This is going to be a transition and I am sure that my ideas about it will change. I have a couple of wigs (including an awesome pink one). So for now, no one should know

what to expect when they see me!

Just a picture of Gess

2011-06-12T19:56:00.000-07:00

Playing tug with Beauty :)

It all started with a lump

2011-06-10T17:11:00.001-07:00

I've been asked many times how my cancer was detected, usually coupled with an assumption that it was during a mammogram. But I'm 7 years away from having my first routine mammogram. It all started with feeling a lump. I don't remember exactly what I was doing, but I bumped my breast and it was painful, so I felt the area and noticed a pretty sizable lump in the upper quadrant of the right breast. Because of its location, size, and the pain, I knew that it was something new and it caused some concern. So, the next day I called my women's health provider and explained what I felt. I also told her that I was leaving for vacation the next day. She said that it wasn't an emergency and that generally cancer didn't appear suddenly and wasn't usually painful. She did want to see me so we scheduled an appointment for when I came back from vacation. I went off to Colorado and Florida, trying not to worry about the lump, but concerned that it was painful. I did not think that it was cancer--I thought that it was probably a cyst and I just hoped that I didn't have to have surgery to deal with it.

The day before I came back from vacation I called too see if there were any cancellations and got earlier appointment, for the day after I got back. So, on March 31st, I went and had an exam. The NP saw that there was a sizable lump (duh!) and also felt one in the left breast. She sent me to Swedish Comprehensive Breast Center for an ultrasound. She told me that it was likely not cancer and was probably a cyst.

When I got to my appointment at the breast center the following week I had to have a mammogram (ouch!) and then an ultrasound. They didn't see anything on the left breast, but confirmed a large mass on the right. The radiologist said that it was likely a cyst--a fluid-filled sac--and that they would see me again to drain the fluid and take a biopsy. The aspiration and biopsy was scheduled for April 12th, less than two weeks after my initial appointment. When the radiologist inserted the needle to aspirate what we believed was a cyst, she was unable to get any fluid. It was a solid mass. She took a couple of samples, told me that it was likely a fibroadenoma (a non-cancerous tumor) and that the pathology report would take two days. That was the first time that I even entertained the possibility that it could be cancer, but it really seemed like a remote possibility. I have no family history of breast cancer and I'm only 33. Plus, my husband just died for goodness sake! I can't have cancer too.

The next day was April 13th--it would have been Gessner's 34th birthday. I dreaded the day because I should have been celebrating my husband's like, not facing the reality that he was dead. I didn't know what to do for the day and finally decided on keeping myself distracted. I had acupuncture and then coffee with a good friend. I decided to go to grief art therapy that night and had a few hours before that started, so went to University Village for a little retail therapy. I parked my car and got close to the shops when my cell phone rang. It was a local number, but not one that I recognized. I picked it up and it was Dr. Browning for Swedish Breast Center. She had my pathology report. She was sorry to tell me that it is cancer. Is at on a bench, completely floored. I grabbed a notebook out of my purse and started writing information down. Invasive Ductual Carcinoma. Most common form of breast cancer. Appointment with a surgeon. Telephone numbers. Names. I said goodbye and she expressed her sympathy again.

I started to make phone calls, relaying the news, still in disbelief. I got another call from a nurse, saying that they found me an earlier appointment with a surgeon. And then the whirlwind started.

Everything I learned about being a patient...

2011-05-30T00:32:00.000-07:00

Everything I learned about being a patient, I learned from my husband. My husband was born with cystic fibrosis and struggled with it his entire life. I knew about it from the beginning of our relationship and it became one of the biggest parts of our life together--taking up so much of our time and energy. In a lot of ways my primary role was as witness. Witness to the pain and suffering that my husband endured and witness to his beautiful, wonderful life despite of CF. I was the one person who saw it all, walking beside him, holding his hand. For some reason now, the fact that I was there to witness feels like one of the more important roles of my life. I got to see all of the parts, where he only showed other people certain parts.

As the witness, I always saw him in his role of patient many times. He was a different man when he was in a hospital gown. At times the different behaviors drove me crazy, but I could also understand the reasoning for some of them. And now, as I am forced to wear a patient gown, I see myself modeling my behavior after Gessner. It was so exact the other day that I felt like Gess was speaking through me. It was during my first chemotherapy treatment.

I arrived to the Cancer Institute about half-hour early, picked up my lab slip and went to the lab. It was my first treatment and somehow I already knew the routine. Check it at the front desk, get lab slip, take slip to lab, get blood drawn, take slip back to the front desk. It went seemlessly; the nurse accessed my port, drew my labs, and put a dressing on the port so I could keep it until I did my treatment. I took my slip back to the front desk and sat in the lobby to wait. And wait. And wait. Gess taught me to always have something with me to do while waiting...so I had my iPod, iPad, knitting, and a kindle full of books. I also had a friend with me and the hospital had jigsaw puzzles on a table. So, we were sufficiently entertained during the wait.

Finally we went back to a treatment room, for some more waiting. Again, something that Gess went through all of the time. There was some delay in getting my assignment for a clinic trial, so we literally sat there waiting for the researchers to randomize me. I handled the waiting with poise and grace, not by getting grumpy at the nurses or pacing around the room.

The results were finally brought to my room and I signed the consent forms and the nurse took me up to the infusion floor. More waiting, but I tried to stay calm by listing to my "relaxing" playlist. Gess often slept at these times if possible.

When I went back to an infusion room, the nurse told me that they need to get another blood draw and that it needed to come from my arm, instead of my port. This happened a lot with Gess and I know that it was frustrating for him. But, Gess never allowed himself to take that frustration out on the nurse or the phlebotomist. And just as he would have, I found myself smiling at him as he walked in, asking how his day ways, and making other small talk. I apologized for him having to come all the way upstairs just to get my blood and as he left, Gess's words came out of my mouth, "Well, thank you sir. Have a good one." Those were his words, but they felt completely natural coming out of my mouth.

Gessner's demeanor and attitude with the doctors and nurses impressed everyone he encountered. I received countless notes and cards from nurses and MAs who had cared for Gessner during his many stays and they all commented on how friendly and positive he was even when he was feeling so sick. I want to be like Gess in this way and want the people who I encounter during the journey to have a positive association with me. Of course, there were plenty of times during my reign as wife that I had to be stern or demanding of medical professionals--and those times were necessary. But for the most part, I want to be a caring and compassionate person to those around me, even when I am not at my best.

Good morning from Gessner

2011-05-24T06:48:00.000-07:00

I've been thinking a lot about Gessner lately. I think about him a lot anyways, but the last couple week have been particularly difficult because of the egg retrieval and the anticipation of starting chemo. At one point during my lowest part--partially induced by the mega doses of hormones cruising through my body and probably the highest amounts of stress I have had in awhile--I felt utterly and miserably alone. It happened because I was having trouble finding someone to take me to the appointment to have my eggs harvested. It was late notice and the date kept changing and I understand logically that people have plans. But, my heart was broken realizing that I no longer have "the person" whose job it is to take you to these types of appointments and to be with you no matter what. My relationship with my biological family isn't one where I can get that type of support for a variety of reasons. But since I was about 19 and feel in love with Gessner, he was always my person. And because he loved me and was committed to me, it was his "job" to take care of me, one that he usually did willingly and lovingly. It was his job to drive me if I couldn't drive myself. And to be brutally honest, it was his job to be there with me that day to hold my hand and get me through that process. But, he's gone and he wasn't there. And yes, there is anger that he is not here for this even though I know that he would have given anything to not leave me.

Now, I don't want to discount all of my wonderful friends. I am so lucky to have so many caring, loving, fun, crazy people in my life and my life would be so boring and empty without them. But, as much as any of us might want them to be able to fill the void left by Gessner fully, it just can't be done. The egg retrieval turned out fine and I had multiple people that could take me, but the experience was just a very lonely one for me at times.

This morning I woke up at a very un-Lisa like hour of 5:30 am, with no prompting, no sudden noises, lights, or anything to wake me. Beauty wasn't even awake and gave me her look of utter annoyance when she saw me start to stir. I closed my eyes and tried to will myself back to sleep, but I could tell immediately that I wasn't going to fall back asleep and if I did, it wouldn't be of the restful sort, so I got out of bed.

Beauty stayed in bed, probably hoping that I was just up for a short bathroom break and would be back in bed soon. She is most definitely not a morning person. But after she heard me pouring my cereal, putting her food in her bowl, and turning on the computer, she got up to see what I was doing. I ate a bowl of cereal and took my investigational chemotherapy drug. I had to wait at least 30 minutes to take the rest of my morning medications (also with food--so I guess it is going to be two breakfasts for me for the next 12 weeks). So I checked facebook a bit and posted to convey my annoyance about being up so early. Too many emails, no desire to check them, so I decided to do something else.

Another part of my "therapy" is to take 10 minute walks at least 4 days per week. This is a laughable exercise regimen for me and to be honest, I am a bit peeved about it, but I'll leave that for another day. Adding Beauty into my walks is a bit tricky because she is a beagle and beagles like to sniff everything that they pass. This can lead to 30 minute "walks" that cover about 4 city blocks. Not the kind of cardio that is called for in even this "exercise light" program that I am on. But, at the same time, it seems wasteful to take a brisk 10 minute walk by myself and then have to walk Beauty again later on. Plus, I always worry that her anxiety is going to flare up and she will cry when I leave the apartment. I haven't heard any complaints (and I can't hear my neighborhood's dog or toddler most of the time, so I think that I'm safe), but I don't want to risk walking them up at 6:00 am for no good reason. I also have way overdue library books, so I decided that I will have a multi-tasking walk--getting in my 10 minutes of cardio, giving Beauty her chance to sniff away and catch up on the goings on of the neighborhood, drop off my books, and hit Starbucks.

I decided that the best way for this plan to work was to let Beauty have some sniff time and time to do her morning doggy business to start with so my chances of 10 minutes of uninterrupted brisker walking would be better. That seemed to work for the most part, though I had to pull her away from an especially fragrant rhododendron bush. We got to the library, with 4 more minutes of brisk walking left, so I took her through an empty parking lot, walking down the middle where I figured there would be fewer distractions. Mission accomplished. Library book returned--large fines inevitable.

If I'm up this early and out walking, surely that means a trip to Starbucks is in order. I have been feeling guilty about not using reusable mugs when I go out to get coffee, so I looked at the selection there and found one that I liked because I could decorate it myself and then change the look as often as I want. But, after the cashier rung it up I asked what size it held and it held a grande, whereas I get a tall. So, no dice. I have several travel mugs sitting unused on my shelf because they are just not quite right and so I wasn't going to buy another one to collect dust. In fact, as soon as I finish this blog, I am going to take down those unused ones and put them in my donation pile. And then my new obsession is going to be the search for the perfect travel mug, perfect reusable water bottle, and perfect bag to carry all of the things that I need in a perfectly organized fashion. That should keep me occupied for a few weeks!

Anyway, I got my drink (double, tall, soy latte in case you wondered) and went on my way. Beauty had had enough of the brisk walking, so we took a more leisurely pace. I forgot my cell phone at home, so I could not be tempted to check my email or post on facebook, so I just enjoyed the cool morning weather, the hot latte in my hand, and that fact that I feeling pretty darn good, especially after nine long hours at the cancer center yesterday, my first dose of chemo, and about 5 hours of sleep. Beauty stopped at a tree and found something especially interesting so lingered there for a bit. I watched her, wondering, like I often do what it would be like to be a dog and what she was thinking at that very moment. Then I started thinking about the chemo treatment of the day before and decided that I would blog about it when I got home. I wanted to write (inspired in part by a facebook friend's daily word count reports), but wasn't really in the mood to work on my memoir with so much new news in the forefront of my mind.

Beauty started to move on and so I turned around toward the side walk and there it was sitting right in front of me in the middle of the sidewalk as if it had been specifically placed there for me to see. One white and gray pigeon feather. I smiled immediately and felt Gessner with me. Most would probably wonder how a pigeon feather could have this effect on me, pigeons are gross, shit everywhere, and carry disease. But I always think of Gessner when I see a feather because of a story he told me from when he was a little boy. He used to hunt for and collect feathers and then would take them and try to sell them around the neighborhood for a nickel a piece. He was a born salesman and I can't imagine anyone being able to resist that smile of his. For some reason, I have always found this story so cute and smile a wide, cheesy grin every time I think about it.

Before I really had a chance to consider what I was doing, I picked up the feather. Normally I would tell Gessner not to touch feathers. That they are gross and probably have some sort of lingering disease that is going to cause him a stay in the hospital. But I didn't hear my neurotic warnings and instead picked it up, gently touching the front and the back, stroking it as I might stroke Gessner's hand, and then placed it carefully into the pocket of my hoodie.

As we walked back home I thought about the feather and what I was and was not going to do with it. First of all, I was going to scrub my hands immediately upon entering the apartment. Second of all, I was not, most definitely not, going to google anything about germs or pigeon diseases and refuse to listen to any well-meaning friends who insist on doing so. Then I thought that I would put it in a scrapbook or use it in one of the new mixed media pieces that I am working on. But when I got home and emptied my pocket, the feather was not there. I searched the bag I had my books in, my wallet and felt around the insides to see if it had gotten stuck somewhere. I walked back down the hallway and to the elevator, wondering if it had fallen out when I took my keys out of the pocket. But the feather was gone.

Mentally I was sad that the feather was gone because to me it was a message from Gessner, it was an embodiment of him. But emotionally I was still smiling because i had just encountered him and will have that encounter with or without a physical feather in my hand. I love these little reminders that Gess is still with me. For about the last month, I haven't felt him or seen him here and that made me very sad and lonely. But he came back. He was with me yesterday as I sat in my chemo chair and he met me on the street in Ballard this morning. These are what I hold on to now and file them away in my heart where he will always be.

April 13, 2011

2011-05-13T23:29:00.000-07:00

One of the things that I have learned as a widow is that impending "big" dates are hard to deal with. Sometimes I think that the anticipation of the date is often worse than the date itself. In the beginning when Gessner died every Tuesday marked one more week after he passed and I dreaded Tuesdays. He died on the second of the month, so every month I dread the second. Then there was Christmas, New Years, our wedding anniversary, and Valentine's Day. The most recent "big" day that was coming up was Gessner's 34th birthday--or what would have been his birthday. April 13th.

In both my grief support group and in the books that I have read on grieving, people have a lot of different ways to deal with a partner's birthday. Some have a party, some hide in bed, and others pretend that it is another day. I didn't know what to do and racked my brain trying to figure it out. Finally I decided that I would just try to keep myself distracted and do what felt right. I had acupuncture and then coffee with a great friend. After coffee I had a few hours to wait before an art group therapy session, so I decided to do a little retail therapy.

I parked at University Village and started to walk toward one of my favorite places--Barnes & Noble when my cell phone rang. I didn't recognize the phone number but it was local and so I picked it up.

"Hello."

"Hello is this Lisa Worthington-Brown?"

"Yes it is."

"Hi Lisa, this is Dr. Browning from Swedish Comprehensive Breast Center. We got your pathology results back and I'm sorry to tell you, but it is cancer."

"Okay."

I sat down on a bench, grabbing a notepad out of my purse to take notes.

"Do you want to know what type of cancer it is?"

"Um, yeah..."

"Well, it's invasive ductal carcinoma. It's the most common type of breast cancer."

She went on to explain that the first step would be to see a surgeon and to say that they had set up an appointment for me. I took down the information, my head still spinning.

"Do you need me to call someone for you?"

"No, I'm fine. Thank you." Thank you? Thank you for turning my world upside down. I hang up the phone and then realize that tears are streaming down my face. I take a deep breath and start making phone calls, letting people know the news. I have cancer. Those words seem sharp and too big for my mouth. I hear that shock and hurt in the voices of my friends and family. Everyone has questions, and I have very few answers.

A stranger walking by stops and asks if I am okay and I quickly assure that I am fine. But honestly I didn't know what I was. I was in some sort of alternative universe and nothing made sense.

I couple of nurses called, each giving me more information which I dutifully wrote down in my notebook. I finished up my phone calls and went back to my car, forgetting about the book store.

I thought that the worse part about that day would be that it would have been my husband's birthday. But it was worse. It was a day when I should have been celebrating life with the love of mine, but instead was grieving and learning that my life was in danger. That there was tumor inside of me trying to kill me. And that I would have to face that tumor alone. Maybe I won't be here to dread his birthday next year. Or maybe I will have a bittersweet day of grieving for him and celebrating defeat over cancer. Or maybe it will be something else. I'm learning not to trust anything that I think that I know. I don't know life and it doesn't make any sense. I don't know how my husband could have died and how I could have gotten cancer within 6 months. I don't know how I'll be able to make it through this, especially without Gessner. So for now, it is one breath at a time.

112 days, 5 hours, 5 minutes and 47 seconds

2011-02-23T01:26:00.000-08:00

It's been 16 weeks (or 112 days) since Gessner died. It really doesn't seem like it has been that long, but at the same time it feels like it has been forever. Each day is long and short at the same time. It is so hard to believe that this even happened. I keep thinking that I am going to wake up and realize that I have been in the most vivid nightmare. I was thinking about it last night and it all happened so suddenly. Gessner stopped working only 3 months before he died. He went on short term disability so that he could go to all of the transplant evaluation appointments and focus on his health. Neither of us had any idea that he would never go back. In fact, I remember him talking to his doctor about going back to work the day after his TIPS procedure and less than 2 weeks later he was gone.

I am doing okay, but also not okay. I think that the outside world probably thinks that I am fine. I feel fine at times, which is a strange feeling, but a lot of times I feel completely lost and broken. I love Gessner with every fiber of my being--as cliche as that sounds and I feel like I have been ripped apart. But apparently this is part of the process. So I take it one moment at a time and hope that it gets better.

Feeling lost

2011-01-08T23:55:00.000-08:00

I feel so lost without Gessner. I'm not sure that I ever thought that I would say that. I fancied myself an independent woman. But the truth is that Gess was my everything. And now that he is gone, I don't know what to do. I go through the days because I have to, but I don't have any purpose. I just go through the motions of life and put one foot in front of the other. They tell me that this is all normal. That I am still in shock.

But there are times when the pain feels like it is too much. I know that Gess wouldn't want me to be such a wreck, but I can't help it. I can't seem to pull things together and figure out what I am supposed to do. I don't want to have to fight through this. I don't want to keep trudging along this "grief journey." I want my life back! I want to be myself again. But I died that night with Gess and I am not sure if I have the energy to rebuild myself.

Alas, I know that I will have to. I will have to keeping putting one foot in front of the other. I must have faith that there will be a day when doing that is not so difficult and that it will not always be such a battle. I have to have faith that I will find myself. Nights like this it is just hard.

Seven weeks

2010-12-22T00:08:00.001-08:00

And it really hasn't gotten better. There are "good" days or moments. I go out with my friends and I laugh. But there is still a gaping hole in my heart and I carry that with me always. I still wake up in the morning and reach out for Gessner. Realizing he isn't there is not a good way to start out the morning. I still see things that make me think "I can't wait to tell Gessner..." and the reality hits me again. It is like a cruel joke.

I am doing all of the things that grieving widows are "supposed" to do. I am trying to sleep, trying to eat, getting a little exercise, but not too much, seeing my friends, etc. But really I don't know if it is helping. I don't think that there is anything that can help. The simple fact is that my husband is gone. Gessner is my life and now he is gone. I don't know how to be without him and honestly I don't want to have to figure it out. I am exhausted. I don't want to find the "new" me. I don't want to be a widow--I hate that word and everything that it means. I want people to stop looking at me like I'm broken...but I am broken and I don't know if I will ever be whole again. On nights like this, it doesn't seem possible. I feel like my life is over and I am just going through the motions now.

Memories...

2010-12-08T21:26:00.000-08:00

Memories are all I have left now and I am afraid that I am going to forget them. But the thought of putting them all down is daunting. So, I'll start with a few:

If I gave him a peck when he asked for a kiss he would say "No, I want a MOVIE kiss."
When my nose got cold (which it often did), he would tilt his head to offer me his neck. I would put my nose on his warm neck. It always made me smile.
He had icicle toes and loved to put them on me at night (and make me squeal of course).
He gave Beauty the nickname "boo boo."

I miss him so much!

Grief is exhausting

2010-12-04T20:36:00.000-08:00

It is amazing how much my life has changed in the past 32 days. Intellectually I knew that my husband would die early--he had a fatal disease--but it really never seemed real. Until it happened. And now it is way too real. And really exhausting. I am having trouble sleeping again, which of course does help. But it is kind of surprising how excruciatingly tired I am.

My husband's obituary

2010-11-14T18:40:00.001-08:00

Michael Gessner Brown had a contagious smile that lit up the room and warmed everyone around him. 'He was one of those bright shining stars that you only encounter a couple times in your life,' a friend said. His death on November 2, 2010 left a hole in the hearts and lives of those who knew him.

Gessner was born on April 13, 1977, to Thomas and Barbara Brown and sister Diana (Hall). He was diagnosed with cystic fibrosis as an infant, but never let his illness stop him from living life and inspiring others. As a child, Gessner was always on an adventure and always trying new things. Gessner loved the outdoors and took every opportunity to be active. He loved to hike, fish, camp, and rollerblade. He earned black belts in four different martial arts and completed a half-marathon in 2006.

Gessner loved kids and they were drawn to him like magnets. He was always ready to get down on the floor and play or use his slap-stick antics to make kids (and adults) laugh. A friend's nephew never missed a chance to ask if Gessner could come over to play. He was always willing to let his niece Hannah dress him up and fix his hair. Hannah's favorite video to watch over and over again is one of Uncle Gessner acting like a ham and pretending to fall just to make her laugh. He was a great storyteller and entertained many with his tall tales. One friend said she is sad her new baby girls will never get to know him.

Gessner enjoyed animals just as much as kids. He had plenty of pets, from snakes to lizards to a baby turtle he smuggled home in his pocket on the plane last year. He had a great love for his beagle Beauty and never missed a chance to play chase or snuggle with her.

A true romantic, Gessner loved to surprise his wife and his love for her was apparent to all who knew him. A friend described Gessner as one of the most romantic and devoted husbands she has ever met. Gessner met his wife Lisa (Worthington-Brown) in college and they were married for nearly 12 years. 'Gessner would leave love notes for me to find and write messages to me with soap on the mirror. He always told me how much he loved me and made me feel so special,' his wife said.

Gessner loved his job and excelled in his profession. Most recently, he worked for Expedia as an Offshore Initiatives Project Manager. Coworkers saw in him a passion for work and a loving, generous nature. Gessner refused to let CF keep him from working and advancing his career. He would attend conference calls from his hospital bed or secretly infuse IV antibiotics while giving a presentation. 'Gessner was always so positive and upbeat, yet laid back. Now, knowing that he was facing a life threatening illness, it's all the more amazing what a great attitude he had,' said one coworker.

Gessner loved to make people smile and nearly everyone who met him has a story to tell about something he did. From his silly outfits, to his signature sound effects, to his bizarre gag gifts, it was hard not to burst into laughter when he was around. A generous and helping spirit, Gessner was always ready to step in and assist others. He was thoughtful and encouraging, forever sending notes and gifts to remind people that he loved them. As his health deteriorated, Gessner strived to keep a positive attitude and live life as much as possible.

Even in death, he wanted to help others. He donated his corneas and they were transplanted to improve someone's vision the day after his death. He also gave his lungs to research. 'Gessner was one of a kind,' a friend said. 'I knew he was something the first time I met him. I will miss his friendship. Gessner is an inspiration to me. Words can't describe how much I respect and admire his courage.' His family was thankful to have him for his short lifetime. 'He was the strongest person I have ever met,' his sister said. 'I am a better person for having known him.'

To further Gessner's desire to help others, donations can be made to the Cystic Fibrosis Foundation in lieu of flowers.

Published in The Seattle Times on November 14, 2010

New Quilt Project

2010-10-11T12:18:00.000-07:00

I took a Half-Square Triangle Class with Katie at Fabric Crush this past weekend. It was so much fun! Here is my design so far (and yes I realize that two of the bottom blocks are messed up--I'll fix it!).

When I Grow Up

2010-07-18T17:19:00.000-07:00

I find myself asking "What do I want to be when I grow up?" from time to time. Silly question for someone that has a law degree and 7 years of experience as an attorney (plus an MBA), right? As much as I tell myself that, I can't seem to shake the question. I find that I am always searching for what is right for me. I like my current job (though it is only part time), but I also want to explore myself and especially to see if I can do something creative with my life. Enter When I Grow Up Coach Michelle Ward. Michelle is a Creative Career Coach who I am working with over a span of about 3 months. We are about a month into the process and I am learning some things about myself and love Michelle's encouragement.

This week's homework had me looking at my personality type and what that means for career aptitudes. I have taken various versions of the Myers-Briggs type indicator tests over the years and always come up with one of two scores--either INFJ or INTJ. I think that I am pretty evenly matched between F (Feeling) and T (Thinking), so that is what explains the differences in scores. I looked through the differences between INFJ and INTJ today and relate a bit more closely to INFJ, so that's what I am calling myself. Ms. Introverted, Intuitive, Feeling, Judge.

Do What You Are: Discover the Perfect Career for You Through the Secrets of Personality Type by Paul D. Tieger and Barbara Barron looks at each unique personality type and discusses the strengths and weaknesses associated with that type as they relate to career success. Tieger and Barron also list indicators of career success for each type and popular occupations for the types. This was pretty interesting to read and I found myself identifying with each of the listed indicators of career success for my type. Some of the popular occupations for my type were also interesting and include: career counselor, teacher, sociologist, nun, artist, novelist, interior designer, mental health counselor, holistic health practitioner, human resources manager, environmental lawyer (at least one attorney job!), curator, coach, project manager, and human resources recruiter (there are many others).

I can't wait to explore this more thoroughly!

Creative blockage

2010-07-03T20:21:00.000-07:00

I recently decided to focus on being creative and feeding that part of my life. I set up time to create, I started thinking about myself more as a "creative," I signed up for group Life Coaching with a creative life coach. And what happens? I can't seem to create much of anything. I feel like a complete fraud. The last few days I have this sinking feeling that I am not really creative and that i just **wish** that I were creative. I sit down in front on my computer to work on some designs that have been living in my head for awhile, and what happens? Not much...mostly just crap that some 1o-year old would make during craft time at summer camp. I started on a painting and was digging how it was coming along...then tonight I went over and ended up complete f*cking it up! I am going to have to start over from scratch. And this is not a "oh, you can fix it?" or "who's to say it is a mistake" sort of thing...it's a completely, totally, non-redeemable action. Ughhh! Maybe I should resign myself to the apparent fact that I not actually creative and clear out all of this stuff that clutter up my craft room.

2010-07-03T20:12:00.000-07:00

21.5.800 Challenge Day 2

2010-06-09T22:19:00.000-07:00

It's Day 2 of the 21.5.800 Challenge and I am still here. Today was hard. I am exhausted and didn't restorative sleep last night. So I woke up later this morning and didn't have time to workout, do yoga, or write. But, I did do it when I got home, so I get a gold star for effort. I did a yoga DVD that I have at home (Stress Relief Yoga for Beginners). I was challenging. I felt fat and inflexible. And to top it off...Gess was sick and vomiting upstairs while I was trying to practice. I think that my lesson for this may be that I need to do yoga at the gym without Beauty or Gessner to interrupt.

Writing was okay today. I am angry and that is what I wrote about. I am hoping that giving that anger a voice will help me get through it.

Day 1 of the 21.5.800 Challenge

2010-06-08T22:37:00.000-07:00

Today is Day 1 of the 21.5.800 Yoga/Writing Challenge and I'm happy to report that I made it. I know that doing things first thing in the morning is the best way to ensure that I do them. This is why working out regularly works best for me when I drag myself out of bed early and just get it done. I also like to start my day off on a good foot.

So, first thing this morning I got up and decided to do my challenge. I read Bindu Wiles blog post about the savasana pose. She urges: "If you are fried, hate yoga, have several children under the age of three, just had a root canal, are exhausted, and/or are energetically behind the eight-ball in every way, PLEASE DO SAVASANA FOR THE 21 DAYS. I promise you the pose will do it’s magic." I fit in the category of friend and exhausted, so I decided to give this a try.

I turned on the meditation music she recommended and got into the savasana (or corpse) pose. I started to relax but could hear my dog wandering around, probably trying to figure out what I am doing laying on the floor! I ignore her, hoping that she will go away, but the next thing I know she drops a toy on my lap. I ignore it, but she persists and puts another toy in my hand. I relent and sit up to play with her for a few minutes...she is just too cute to ignore! I play for about five minutes and try to pose again...no luck. Up I go...maybe a walk will help. It was a beautiful day and Beauty thoroughly enjoyed the walk. She did a lot of rolling, which she is in the habit of doing and I have gotten lax in stopping her since her cancer came back. We stopped at our favorite espresso stand and then headed up. The walk was nice. Sunny, coffee, and a cute beagle. What more can a girl ask for?

Back on the floor, corpse pose. Beauty was still intrigued, but instead of burying me in toys, she just found a spot on the floor next to me. Music on, timer set, Beauty less annoying. One thing that I noticed while I was doing the pose was how tense I am. Even when I am purposefully trying to relax, I struggle. I realized that my left shoulder was hiked up toward my ear and my jaw was clenched. I tried to relax those and focus on my breath.

The one thought that kept occurring to me during this time was self-criticism for not being able to relax correctly! Surely this is not a way to relax. I am hopeful that this challenge will help me both learn to relax and stop being so self-critical.

On to writing...I did write immediately. I showered and did a few other things before heading to a coffee shop to write. I like to write in cafes and book stores. I like the noise as long as it is just a lull...it helps me concentrate. Today I decided to just write "morning pages" ala Julia Cameron.

One of the things that hit me during this writing session is how afraid I am a failure. More on this to come...

21.5.800 Challenge

2010-06-06T15:08:00.000-07:00

I'm joining Bindu Wiles and a bunch of others around the web for the 21.5.800 challenge starting June 8th. This challenge includes doing yoga 5 days a week and writing 800 words per day. I will blog about my experiences. I'm looking forward to the extra push to write daily and practice yoga frequently. Stay tuned! Better yet, join me HERE.

Hometown

2010-06-01T21:22:00.000-07:00

I was filling out a form yesterday and had to write in my "hometown." I immediately wrote in Yakima, Washington, which is where I grew up and lived for 17 years of my life. But as I started thinking about it, I definitely do not consider Yakima "home." In fact, I pretty much hate Yakima. I still have family there so I visit from time to time, but I don't like it. I get so stressed when I am there. It is not home. Seattle is my home. I absolutely love it here. Where is your home?

Setting Goals

2010-06-01T21:15:00.000-07:00

I am in a goal-setting, life-exploring, ready-for-change mode. One area that has been a big struggle for me is my weight. I used to look good. I look back at pictures from college and wonder what happened to me--how I let this happen. I realize that a lot has happened and I can't beat myself up about it...but it is hard. So...I am working on it. And a big part of that is setting goals. My goals are related to both my weight and athletic performance. So....drum roll please....

1) I will weigh 145 pounds and

2) I will complete an Ironman

That's it :)

Can't stop thinking...

2010-05-31T22:57:00.000-07:00

...about this scarf. Totally making it. Totally.

from Brooklyn Tweed

DONE!!!

2010-05-11T21:02:00.000-07:00

I finished my MBA coursework yesterday. Yippee!!! Now what????

Pass the duct tape please

2010-04-20T22:20:00.000-07:00

The good news: I went to a track workout tonight! And I didn't cry! Yay! I went slow and didn't go very far, but I went. It is hard to get back into it. And there are some AMAZING athletes on my team who run circles around me.

My coach asked me what happened (why I haven't been to workouts) and my immediate response was that my life fell apart and it is true. I feel like my life has fallen apart. I don't talk about it a lot on this blog, but my husband has cystic fibrosis. The last year and a half or so have been really difficult and he just can't seem to get better. I feel like we are walking on a tight-rope with his health and it's a scary place to be. My career has also been through a transition period. I lost my job almost a year ago and I haven't found a full-time job yet. It ended up working out well so that I could deal with my husband's hospitalizations and also be there for my father when he was dealing with cancer. But, it has been rough on me mentally. I am working part-time now and doing some interesting work, but it just isn't the same. I am scared that I haven't been able to find something yet, but on the other hand, I am also scared that if I did find a great opportunity that it would be too hard to do with all of the other stuff going on.

So yeah...life has been messy...and there are days when I am a complete mess. But I am trying to put things back together. So, pass the duct tape and let's go!

A rough road...

2010-04-07T20:41:00.001-07:00

I will admit it. Things have been really rough. I don't want to whine or make excuses, but I am struggling and really just tired. So...I'm just putting one foot in front of the other and hoping for better days soon.

Edward Worthington Sr.

2010-03-31T23:17:00.001-07:00

Edward C. (Ed) Worthington Sr.

YAKIMA - After a short, valiant battle with lung cancer, Edward C. (Ed) Worthington Sr. succumbed on March 22, 2010 at Willow Springs. He was born in Yakima September 11, 1940 to Glenn Worthington and Belle Smith Worthington. He attended school in Yakima and enlisted in the Marine Corps after high school. Ed had several jobs after the Marine Corps. He worked as a roofer and as a chemical dependency counselor. His favorite job was working with disabled adults. Ed loved to fish and camp. He volunteered at Camp Primetime. He was close to his family and especially loved his grandchildren. Ed is survived by his loving wife Sherry and sons Robert (Bea) of New Mexico, Ronald (Deanna), David (Danielle), both of Yakima, Edward Jr. of Toledo, WA, daughters Lisa Worthington Brown (Mike) of Seattle, Della (R.D.) Osborne and Mary of Yakima. Ed is also survived by two sisters, Kathleen (Jim) Martin and Lora Urvina both of Yakima, and a brother Jim Worthington of Auburn, WA. Ed is also survived by many grandchildren, nieces and nephews. There will be no funeral services but family and friends are invited to a gathering to celebrate Ed's life at 12:00 noon Friday, March 26, 2010 at the LDS Stake Center, 705 S. 38th Ave.

Ed was preceded in death by his parents and infant son Brian.

Which events?

2010-01-12T13:50:00.000-08:00

So now that my legs are cooperating, I need to decide what events I want to train for this year. I still really want to do a marathon, but am scared to register now because I am afraid that I will jinx my legs. I would also like to do at least one triathlon...maybe Seafair sprint. A friend of mine is going to do her first triathlon this year, so I said I would do that event. What else? I want this to be an awesome year!!! Decisions, decisions, decisions...

First Track Workout

2010-01-05T23:11:00.000-08:00

Last year I decided to join a triathlon group and get some help with my running...well, my shins did not cooperate, so I didn't get to do as much as a wanted. Now, post-surgery, I am joining up with the group again. Tonight was the first track workout of the year for TNMultisports and I was so happy to be there! It was a great turnout...the team is big! I was a slow as molasses, but I was there, and my shins DID NOT hurt! I can't tell you how excited I am! I was nervous when I started knowing that I would be really slow and scared that the pain would be back...but I talked myself out of that and tried to relax. So, about 3 miles tonight (1 jogging at a snail's pace and 2 walking) in the books. Yay!

Thanks Teresa for hanging in there with me and my injuries and a HUGE thanks to Dr. Brian Perry who took my pain seriously and kept at it until we found out what was going on. Jogging without pain is a new experience--one that I could definitely get used to!

Here's to an athletic 2010!!

My New Toy...

2010-01-04T17:32:00.001-08:00

...I mean training tool :)

Can't wait to give this bad boy a try!! This is a Garmin Forerunner 310xt Mutli-Sport Training Device with Heart Rate Monitor.

11 Years Ago...

2010-01-02T21:16:00.000-08:00

I said "I do" to a wonderful man :)

MBA progress

2009-12-30T16:57:00.000-08:00

Credits Required for Graduation

Content Requirements	Credits Required	Credits Applied	Credits Remaining
REQUIRED	36	27	9
Total	36	27	9

That's right...9 credits left--three more classes :)

Bad Blogger

2009-11-17T00:02:00.000-08:00

I have been a very bad blogger, I know. But things have just been crazy (and unfortunately not in a good way). My husband and I both got the swine flu. Yep. The swine flu. I wasn't tested (my doctor said it was the swine flu based on my symptoms and the fact that H1N1 is what is going around). But, my husband was tested and it came back positive for H1N1. It is unlikely that we had different flus, so I am positive that I had the swine flu. Luckily I got on Tamiflu and some herbal tea from my nautropath and am much better. Gess is feeling better too. He has a cold now and is on IV antibiotics, so hopefully he will get better instead of sicker.

In other news...I went to a CF fundraiser on Saturday night and had a great time. I met a friend of a friend and we luckily got along very well. She is a lot of fun. The fundraiser was a huge success as far as I could tell. I am waiting to hear the official numbers, but I am sure that it raised a lot of money for the CFF!

School is going fine...only 4 more classes and I am finished with my MBA! Can't wait!

Beauty is doing fine...nothing new on her front. She is spoiled and silly like always.

I haven't done anything crafty in awhile and I hope to remedy that very soon! I will blog and post pictures as soon as I do.

I need your help!!!

2009-11-01T16:42:00.000-08:00

I am doing a project for my MBA class and need to get this survey filled out. It needs to be filled out by MEN....so if you are a guy, PLEASE fill this out for me. If you are female, please get your male friends/spouse/SO/brother/dad, etc. to fill it out for me. I REALLY appreciate it!!

http://surveys.polldaddy.com/s/D59358266EB1ACE6/

Thanks!!!

Update on my dad and visit to Yakima

2009-10-28T23:35:00.000-07:00

It has been just under 2 months since my dad was diagnosed with cancer. I really can't believe that it has only been that long...it seems like several months have passed. I think that is just because so much drama has happened here. Anyway, I decided that since things have calmed down just a bit at home, I decided to make a quick trip over to Yakima to see my dad and take him to his treatment.

He is doing radiation five days a week and then chemo on Wednesdays, so I came for a chemo day. I came over last night since he needed to be at the center at 8:30 am. The ride was beautiful, I forgot how beautiful Yakima can be. I think that part of it is that I have such negative emotions attached to this place. But if I look at it more objectively, it can actually be a rather beautiful place...the city itself not so much, but the drive up here is pretty amazing.

Last night I had dinner with an old friend, and had a really nice time. I miss chatting with her. It was so nice to see her, looking happy and healthy. She was given a "terminal" cancer diagnosis in 1997. So glad that they were wrong!!

I didn't sleep well, maybe it was because of worrying about being in Yakima, or maybe just my insomnia hanging on...so this morning came a bit too early. Thankfully I did have time to find a Starbucks (and the very handy new Starbucks iPhone app that located the nearest stores for me).

I picked my dad up and wasn't quite sure what to expect. He is now on full-time O2 (2 liters). I think that the biggest difference was the weight he has lost...29 pounds since I last saw in him September, 29 pounds that he didn't have to lose to begin with. Other than that, he looks pretty good. I think that he is losing some of his hair, but he is 69 years old, so it doesn't look necessarily odd or out of place.

First stop was blood work, then in to see the oncologist. My dad was his normal joking self when the nurse came in. She was a new nurse to him, so he started out with his joke routine. I nearly fell out of my chair when I heard the word "penis" come out of his mouth...but fortunately the nurse didn't seem to mind or be offended :)

The oncologist told dad that he needed to gain some weight (told him that he looked like he could be in a holocaust movie). I didn't particularly like this doctor. He didn't introduce himself to me or ask who I was. He gave us very little information and I really didn't get to ask any questions. He even prescribed a new medication but didn't tell us. He just handed it to the nurse for her to get it. I don't know if this is normal protocol for this doctor or what, but I know that if I were there regularly I would either get a new doctor or have some words :)

Anyway...after that unhelpful exercise we went into the infusion room. This was the first time that I have actually been in one of those rooms. I have caught a glimpse of the infusion room at the Polyclinic several times as went to my allergist, but have never been in one. So, that was an experience. I also realized when I got inside that it was likely the room where my aunt died a couple of years ago. She was diagnosed with cancer and went in for her first chemo treatment and then died during that first treatment. I am not sure why it never occurred to me before I went there.

Dad handled the chemo procedure well. This was his 5th chemo treatment, so he has been down the road before. It was just obvious from some of the other patients that they didn't tolerate it as well. Dad's sister came for a bit and we chatted a bit, and then she went to help Dad's wife set up a new bed for Dad (he can't sleep in his regular bed because of his "wound" from the radiation). Dad slept a bit during, and I did a little knitting. The treatment last about 4 hours total I think. After his infusion was completed, the nurse came by and changed his PICC dressing.

Then over to the radiation suite. Luckily this center has everything in the same building...the doctor's offices, the infusion suites, the radiation area, etc. It is decorated like a lodge with "log-esque" furniture and fake creek outside. A bit cheesy to me, but nice that they really tried to make it a comfortable place for the patients. It was busy and there were many "sick" people there, but it definitely didn't have that sterile "sick" feel. It was quiet and a bit peaceful. Which I think is really great. I wish more medical facilities paid attention to aesthetics. I know that medicine is the primary purpose, but other things are important for healing too.

Anyway...we had quite awhile to wait before the radiation treatment, so my dad told me a bunch of stories. We had been estranged for quite a long time (he was an alcoholic and left my mom when I was 7 and then he basically disappeared until I was 17. I tried to let him in, but couldn't deal with it, so haven't had much contact with him. Some letters, a couple of visits, but not much. But I think that I have finally let go of a lot of that stuff). So, he was telling me a lot of stories that I have never heard. Fortunately this time the stories were not the hard to hear type.

Finally he went to radiation and I picked up his prescription at the pharmacy. The radiation is really quick and so we were able to go home. He was tired, but I think that he didn't want to lay down because I was there. I talked for a bit, but then told him that I needed to go so that he can get some rest. I will go back by in the morning before I head out of town.

All-in-all that was a pretty good visit. But I am definitely looking forward to going back to Seattle tomorrow! Had a good visit with my grandmother too (but that is probably for another blog...I need to get to sleep!).

Great clip!

2009-10-26T21:28:00.000-07:00

My dear friend Clane is an amazing photographer (I know, I say this a lot, but it is true!). Here is a recent clip from Evening Magazine where he talks about his charity work with families affected by CF. Watch it!! It's not long, and I know that it will touch you!! Go HERE!

Tune in...

2009-10-21T22:40:00.001-07:00

To Evening Magazine tomorrow night (Thursday) at 7:00 to see my buddy Clane Gessel talk about his charity work with families affected by CF. His work is amazing, so evening if you aren't in Seattle or aren't affected by CF, check him out HERE.

Here's a pic from his most recent Shoot for a Cure shoot.

Beauty

2009-10-13T18:25:00.000-07:00

(Beauty first thing in the morning...she is such a lazy girl!)

So, we saw the oncologist a couple weeks ago to talk about Beauty and our options. The week before the radiologist told us that the mass was likely a swollen lymph node and that it was the size of a lime (yikes!). Our regular vet anticipated that the oncologist would recommend surgery as that is the "normal" course of treatment for this type of thing. We knew that we didn't want Beauty to have to do through surgery again.

The oncologist, however, did not recommend surgery (presumably because we tried it once already). Instead she gave us two medication options. The first was IV chemotherapy. They could do a total of 5 treatments, 3 week apart. Chances of success are 50-60% with possible side effects being vomiting, diarrhea, and lethargy. There is also a chance of heart damage, which is more of a concern with Beauty because of her murmur and enlarged heart. The goal of the chemo would be to reduce the tumor size.

The second option was a new drug that is supposed to reduce cell growth, which could indirectly cause the tumor to shrink. There is no data on using this drug for Beauty's type of cancer (anal sac carcinoma) and not a whole lot in general. They estimate that it would have similar success rates and the traditional chemo. This would be a pill that she could take at home, but has a higher incidence of side effects. She said that it was nearly certain that Beauty would need supportive medications like anti-nausea and anti-diarrhea medications and that she would be lethargic.

The estimated benefits if either of these treatments worked is an additional 6-12 months. Without treatment, the oncologist estimates 5-9 months until Beauty will be too sick. She still is not showing any symptoms.

So...those are our choices. Beauty is 9 and seems happy and healthy. I keep vacillating between the chemo and nothing options. The pills seem out for me because of the near guaranteed side effects and the less than stellar chances of it making a difference. If she really only has 5-9 months left, I don't want to "waste" those by giving her pills to make her feel sick. That seems to apply to the chemo thing too. So...for now at least....our decision is to do nothing. We will watch and see if symptoms present themselves and deal with them at that time. For now, she is getting extra love. It breaks my heart and I am so afraid that we will make the "wrong" decision, but how do you know what is right? All I can think to do is do what I think is best for Beauty. And give her lots of kisses!

Update on Beauty

2009-09-30T18:18:00.000-07:00

Yesterday was a rough day. Gess had a seizure (details here ) and the vet confirmed that Beauty's cancer is back.

From the ultrasound it looks like the mass might be an enlarged lymph node, but the cytology report did not show any lymph cells. Not that I suppose it matters. It's cancer and it's back. We are scheduled to see the oncologist on Friday. The decisions that follow are going to be rough.

We also found out that she likely has Cushings, which occurs when the adrenal glands overproduce. Treatment is generally for the symptoms, but right now the only one that Beaut is exhibiting is increased water consumption. Given the cancer, this is of secondary concern right now.

Again, the good news is that Beauty doesn't act sick at all. She was running around and wrestling with her friend Pomps this morning and then has spent the rest of the day cuddled up with us.

Happy Birthday Beauty!

2009-09-27T00:28:00.000-07:00

Beauty turns 9 today! And I am so sad because I haven't seen her :( With Gess's latest hospitalization, she is staying with our friends. When she gets home I am going to give her the biggest kiss and give her something fun for her birthday :)

In other Beauty news, she had her ultrasound on Thursday and was such a trooper! She didn't have to be sedated, which made me feel better. The radiologist said that her lymphnode is the size of a lime and it likely cancer. They were able to take a sample of the fluid in the node and sent that to the lab. We will get the results soon and we have an appointment with the oncologist this week. I think that the appointment is on Monday, but considering Gess is in the hospital I may reschedule (as long as I don't have to pay for a late cancellation).

In honor of her birthday, here's a baby picture of Beauty.

Happy Birthday to Me!!!

2009-09-27T00:19:00.000-07:00

I turned 32 about a week ago. Yep, 32 :) I really didn't feel like a birthday since it was only 2 days after my surgery. I actually ended up sleeping most of the day. Gess and I will will go out and celebrate when things settle down here.

For now, here's a pic from a birthday party when I was a kid. :)

Recovery

2009-09-19T23:48:00.000-07:00

Surgery was on Tuesday and I spent most of Wednesday, Thursday, and Friday in bed sleeping. I had a follow up with my doc on Thursday and he said that things look good. He also commented on how muscular my calves are--which I suppose is a compliment :). Today my legs feel pretty darn good. I have been up and around on them quite a bit and there really isn't much pain. Some soreness and I bet I'd swear if you kicked me in my shins (so don't do that!). I can get on the bike or in the pool late next week! So, all in all, I think that things are going well! (At least on the leg front...the rest of life is still a mess--hubby was just admitted to the hospital, my dog's cancer is back, my dad has cancer, etc....sounds like a very bad country song!).

Tattoo Idea

2009-09-15T21:09:00.000-07:00

I am thinking about another tattoo and can't get this one out of my head! I wouldn't do exactly this, but it is good for inspiration ;)

(image from here)

Surgery

2009-09-15T20:39:00.000-07:00

Today was my surgery for the fascia release for my compartment syndrome. I was a bit nervous I admit--it is just not fun to have to go under anesthesia and go through recovery, etc. Plus, there are always chances of things going awry. Anyway, I had to be at Evergreen Surgical Center in Kirkland at 11:45 am. (Note to self: seeing a specialist on the eastside is going to mean lots of driving to other eastside doctors!). I got up this morning and kept myself busy with some cleaning, etc. We set out for Kirkland around 10:45 am and we got there in no time.

Somehow they had my birthday wrong and all of the paperwork said I was 64 years old! So, new paperwork, lots of consent, etc. I talked to the anesthesiologist and the surgeon and got in the OR around 12:45. I don't remember much...just the doc putting in my IV, the nurse giving me O2 an telling me to just relax and let myself go to sleep, etc.

The next thing I know, I am awake in recovery. Surprisingly I didn't really feel any pain. The nurse gave me some apple juice and let me wake up some more. I noticed that my IV was done and blood was starting to back up, so I let the nurse know and she removed my IV and said that I was doing so well she would send me into the next step of recovery. I got dressed (note to readers, if you are having surgery, bring baggy easy to put on clothes. For me, it was a pair of basketball shorts and a tshirt). We moved to me to second recovery and put me a reclining chair. The nurse couldn't immediately find Gess in the waiting room and he didn't answer his phone. Of course, he was on a work phone call :) Luckily he was wearing an easily describable shirt and she was able to locate him quickly. He came and she went over the discharge instructions. We had to wait for awhile for the pharmacist to bring up my drugs, but as soon as she did, we were able to leave.

I was still feeling pretty good--not much pain at all. I had to ride in the backseat with my legs elevated on pillows on the way home. Got home and got all settled. It did hurt a little to go up the stairs to my house, but it wasn't too bad. Gess parked me in bed and got everything that I needed set up. I feel asleep for a bit. I keep getting hot flashes, which I suppose is caused by the pain meds. It is annoying, but could be so much worse so I am not going to complain!

Chinese food for dinner and a chai latte (which during prep Gess burned himself :( ). Now I am watching old episodes of the Closer (from my blockbuster mail order), "window shopping" on the net, and blogging :)

The doc says that the pain will be the worst tomorrow evening...so not looking forward to that, but also glad that the "worst" will be here soon and then on to recovery! He said that I could swim and even bike (stationary) soon, earlier than I thought. So, I am going to use this opportunity to get back into swimming. Who knows, maybe I will even figure out how to breathe when I swim!!! :)

Pressure Test

2009-09-12T00:53:00.000-07:00

I have had some questions about my pressure test, so I thought that a blog post was in order. The doctor warned me that the test would be painful. She made it sound like it was going to be awful so I prepared myself for the worst. The first thing the she did was mark the locations on my legs with an ink pen. She decided to test by the anterior compartment (which is where I have do much pain) and then the deep interior compartment. After that she spray on some numbing agent and then she injected me with some lidocaine to numb the skin. This hurt, but it wasn't too bad. She warned me that she isn't able to numb the muscle, so the test would still be painful.

After all four locations where numb she measured the pressure at those four locations. To my surprise, it really wasn't painful. The numbing shots were much more painful. These were the baseline measurements.

The next step was the worse--getting my legs to hurt. Fortunately it doesn't take long for my shin to flare. She put me on the treadmill and had me jog for a bit and then walk. About 5 minutes in it started to hurt like crazy and then she wanted me to go for a couple more minutes and I did. I hadn't made my legs flare of up like this in awhile, so it definitely hurt. Then we went back to the office and had to wait for 5 minutes before the rest of the test. This was the most painful part of the test...my legs really hurt, but it is a pain that I know since I have been dealing with it for so long.

After 5 minutes she measured the pressure again, which included 4 more pokes. This wasn't really painful, but I think that it was because the shins hurt so much already. And that was it. Bandaids and orders to rest and not exercise for a couple of days.

One of the good things is that you get the results immediately. My results were very clearly positive, so that was really a relief. I am so glad to see a light at the end of this tunnel! This pain has been going on for way too long and it just seems to be getting worse. I also talked to my ND and he said that compartment syndrome (especially with numbers like mine) can be dangerous. So, as weird as it sounds, I am so excited for my surgery!

Beauty

2009-09-09T20:22:00.000-07:00

As everyone knows, my dog Beauty is my "girl." I love her so much! A week or so ago we saw what looked like urine on the kitchen floor with what looked like blood in it. She wasn't showing any other signs that something was wrong, so we decided to just keep an eye on her. We had to run to Yakima to deal with a family medical emergency (my father was/is hospitalized and being diagnosed with cancer) and Beauty went to her "second home" (our friends' house). They noticed a bloody spot after Beauty jumped on the couch, so they let me know. I figured that those two events were sufficient to warrant a trip to the vet, figuring that she had a UTI.

So, yesterday I took her to Bellevue to see the vet. During the exam, the vet thought that she felt a mass (in Beauty's bum...the site of her previous cancer). She ordered more blood work and did some x-rays. She suspected that the mass was a return of the cancer.

Additionally, she noted a heart murmur. She said that they rate them on a scale of 1 to 6, and that Beauty is a 2. She explained about murmur and said that it could lead to heart failure, but it could also not progress much. So, it really is anyone's guess about what will happen.

Today the tests came back and the x-rays showed an enlarged heart, enlarged liver, and also a mass near her bowel that is pressing on her colon. Beauty's liver functions were slightly elevated, but it is unclear what could be causing that. She also has some crystals in her bladder, but there is no evidence of any stones. There was blood in the urine sample, but based on the way that they collected the sample, the blood could have come from the collection process. So, that is not conclusive, but given what we saw at home, she likely does have blood in her urine.

The vet is recommending that we have an ultrasound done find out more of what is going on. When I mentioned this to Gess yesterday he was immediately opposed. He doesn't want to put Beauty through unnecessary tests that won't make a difference in our decision making. I don't want her to have unnecessary tests either, but I do feel like I want to know more about what is going on so that we can actually make decisions.

So...we are in a rough position. Neither of us wants her to have cancer surgery again. But, we don't want her to die either. It just breaks my heart to even think about this. She is my little girl.

Gess just talked to the vet and says that he has updates for me, but I have to wait until he gets home to hear. Luckily she is not acting sick and doesn't seem to be suffering. In fact, she is up looking for her toys right now :)

Surgery is scheduled...

2009-09-04T20:41:00.000-07:00

For September 15th! Very soon! I am nervous, but also very excited. I can't wait to be able to walk/run without this horrible pain!! The surgery is too close to my birthday, but it's a sacrifice I can make!

In other news, I officially rejoined Weight Watchers in an attempt to lose some of this weight. I have gained some over the past couple of months, so I am really frustrated with myself. It sucks. I am mad, embarrassed, and all sort of other emotions. But, as a good friend reminded me today...I have had a lot going on, so I need to cut myself some slack. So...today is a new day and I am going to try to be easier on myself. Beating myself up is not going to help.

Chronic Compartment Syndrome

2009-08-26T23:06:00.000-07:00

So, it's official. I have Chronic Compartment Syndrome (CCS). Here's the Reader's Digest version (and as an aside, did you know that Reader's Digest just filed for bankruptcy...I guess old people aren't reading magazines anymore!): Your leg muscles have 4 compartments. Those compartments are surrounded by connective tissue called fascia. When you exercise, your muscles swell. Normally, the fascia is sufficient in size to accommodate this swelling and all is good. With compartment syndrome, the fascia cannot support the swelling and pressure builds up...causing lots of pain.

My case seems like a pretty text-book example of CCS, which makes it a bit frustrating that it too so long to diagnose.

Basically, within about 5 minutes of doing any repetitive, jarring active (like running or playing basketball), my shins start to hurt like crazy. The pain is pretty intense, though I tried to just work through it, but it just seemed to get worse and less bearable. And with that type of pain, the mind just screams to stop since something is definitely not "right."

I first had this issue when I was a teenager playing basketball. I would hurt like crazy during long drills and especially during games. During games I would rest during half-time and then would feel quite a bit better and have less pain during the second half (now I know that the pressure was able to go down during half-time). I'd hurt by the end of the game, but withing half an hour or so, the pain would be gone and I would be on my post-game high and not think much about it. Plus I was a teenager and as we all know, teenagers can be pretty stupid.

After high school I basically didn't do anything that caused this kind of pain. I did play basketball some, but just pick-up games in the neighborhood. So my guess is that the intensity was lower and the pressure didn't have a chance to build up so much.

Fast forward to 2006 when I decided that I wanted to do a triathlon. Running hurt, but I really just assumed that it was because I was new to running and overweight, etc. I didn't do a lot of run training because it hurt so much and ended up walking during most of the "run" portions of my two triathlons. In December 2006, I ran a 5k and was nearly in tears by the end. My shins hurt so much that I could hardly walk by the end. But, the pain stopped shortly after the race. I decided to see my doctor, so went to a doctor recommended by my primary care doctor. He was supposedly a sports medicine doctor who treated a lot of athletes from SU. He thought that I had a stress injury to the shin, caused by over training and lack of calcium. He told me to take extra calcium, rest for a couple of months, and then start back slowly. It sounded reasonable, so I took extra calcium and didn't run.

In fact, I really didn't run for about 2 years. I figured if a couple of months rest was good, a couple of years would be better :)

But, when I started trying to run, the pain came right back. Thankfully my running coach referred me to a real sports medicine doctor (Thanks Teresa!!) and I started working with him to figure out what was going on. This was around Feb. 2009. The first thing he did was send me for an MRI. It really didn't show anything. So we tried a bunch of things: massage, acupuncture, injections, really smelly Chinese plasters, long ice baths, etc. Nothing worked. Then while he was at a conference, it hit him, Compartment Syndrome. He sent me to a physical therapist to make sure that it wasn't may gait or something. The PT also thought CCS. So, off to a specialist I went.

The specialist is conservative in her diagnosis of CCS and wants to rule out every other possibility before doing the pressure test because the test is expensive and painful. I had already had an MRI, so that was done. She sent me for nerve studies and also an xray of my low back. Nerve studies were negative, but I have a degenerative disc at L5S1 in my low back, so she wanted to rule that out as the cause. She did give me the option of going ahead with the pressure test right then. In retrospect I wish that I would have, since I would probably be into my recovery right now. But, she really didn't recommend getting the test at that point, yada yada yada.

Off to PT I went. She sent me to the "best" PT and told him to give me 150%. He worked really aggressively on my back for a month with no change. So, not the back.

Finally I had my pressure test and sure enough, compartment syndrome. Good news is that we have a diagnosis. Bad news is that the treatment is surgery. At this point I am so ready to be "fixed" that I am excited about it :). I see the surgeon next week and will hopefully have the surgery soon after. Since I am not working, the timing works out pretty well for recovery, etc. So, let's just get this over with!!

Chicago

2009-08-06T23:10:00.000-07:00

Gess had to go to Chicago for business, so I cashed in some frequent flier miles and tagged along! He had to be there for a meeting on Tuesday, so we flew out on Saturday to enjoy a couple of days in the Windy City.

Unfortunately we stayed out in the suburbs, which was a pain, but oh well.

We got in on Saturday afternoon and got to the hotel, and settled in. We were hungry, but the hotel restaurant wasn't open, so we headed into the a suburban mall for some food. We ended up a Famous Dave's BBQ which was really good, and found out that there is one not to far from us! After that we decided to do a little shopping and go to a movie (because of course movies are special in Chicago!). So, the trip got off to a boring start, but oh well.

We got back to the hotel and did a little work and then went to sleep in our fabulous king bed (I really really need one of these at home!!)

The next day we made plans to meet a friend for breakfast in the city. This is actually a good friend of mine that I made on the internet through the CF chats, so it was really fun to meet him in person. I don't know why we didn't take a picture, but we didn't. We were incredibly late because the train and L took forever to get from suburban hell to the Heartland Cafe in Paul's neighborhood. We also had the pleasure of meeting one of Paul's friends and just enjoying a great brunch (or lunchfast as Paul calls it).

After brunch, we hopped on the L and headed in the heart of downtown Chicago. I have been to Chicago before, but this was Gess's first time. We walked around Millennium Park and saw the Bean (which is officially called the Cloud Gate).

I am not sure how it started, but we ended up doing some shopping--or I should say Gess did some shopping. Somehow we ended up in the Nordstrom Rack (a Seattle store) and he found a suit. We ate an early dinner at Italian Village, which had a nice atmosphere, but mediocre food. Gess was really tired and didn't want to deal with the train, so we took a $75 cab ride back to the hotel (tip: never, ever, ever stay in the suburbs!).

Nap, work, and then late night cocktails/food in the hotel bar, and then sleep.

Monday Gess had to do some work in the morning, so we hang out at the hotel for awhile. Then we went back into the City. This time we took a little water taxi ride from the train station to Michigan Avenue. It was really a beautiful ride. We had a late lunch at the Oyster Bar at Shaw's Crab House. I had crab cake sliders that were good, as well as some organic hard cider. The best part of Gess's food was the key lime pie! It was pricey (we spent about $100 for lunch), and the food was okay.

More walking, back to Nordstrom Rack to pick up the suit that had been altered. Then we went to Chinatown where I carried said suit around.

On the L to Chinatown we witnessed some really stupid teenagers drinking on their way to the Sox's game. These girls were really chugging it down (in an attempt to impress some boys I think). I doubt they made it passed the first inning without vomitting. Seriously, they each had two "pop" bottles. One with diet coke and the other with rum. They would take a big swig of the rum and then chase it with diet coke. In the 15 minutes or so we were there, these girls had probably each drank half of their 20-ounces of rum!

After Chinatown we headed back to the train, but Gess's LONG trip into Walgreens made us late, so we hung out at Barnes and Noble for a bit. Then, took the long train ride back to the hotel. We ended up having a late dinner in the hotel bar and met Gess's colleague.

The next day Gess had to work all day, so I had the day to myself. I took the train into the city and went to the Art Institute of Chicago. It really is a great museum! I loved it!!

I stayed at the museum until I had to go to the airport. Overall it was a nice trip. The weather was perfect, I got to see a friend, and Chicago really is a beautiful city. I would love to live there someday!

Trip to Vancouver

2009-07-30T23:02:00.000-07:00

I really love Vancouver, (despite the Cunucks!). So, when I had to choose a place to go away for a mini-vacation to de-stress on short notice and on the cheap, this was an easy choice!

I drove up and check into the lovely Hotel Le Soilel. We stayed here before and loved its charm, so I decided to stay here again. It is in a good location, has great service, and is just an all-around lovely hotel. Of course, I forgot to take photos again, so here is one from the web:

I arrived at a decent hour (probably around 7:00 pm), but decided to stay in and relax. So, I ordered take out and watched TV and just enjoyed the quiet. I am amazed at how noisy my husband can be! I don't always notice it when I am at home, but I sure do when I am away!

I also picked up a book, so I spent some time reading in bed. Not a bad way to spend the evening!!

The next day I woke up late and lounged around a bit. I finally got up and ready and headed out to Robson Street. I had breakfast at Cafe Crepe (which has excellent coffee, but not so excellent eggs benedict) and wrote a bit. Then I went and did a little shopping (mostly window shopping, but I did stop into lululemon and got a couple of cute water bottles). Back to the hotel and I got ready for a walk to Stanley Park.

Stanely Park is about a mile from the hotel, so I packed up my book, camera, and some water and set out.

It was a pretty warm, sunny day, especially by Vancouver standards. On the way I snapped a few photos of some art:

Stanley Park is beautiful. And because it as such a beautiful day, it was pretty busy. I decided to walk along the seawall, which makes a 8.8 km (or 5.5 mile) loop around the entire park. The views from the seawall are absolutely beautiful!!

I think that next time I go to Vancouver I will bring my bike and also my swimming attire. Stanley Park has beautiful beaches and also a gorgeous salt-water public swimming pool. I was really hot by the time I finished the 5.5 mile walk and really wanted to jump in :)

After I finished with Stanley Park, I walked a little around English Bay and then headed back to the hotel. After about 8 miles of walking, I was ready for a shower and a nap. I ended up waking up rather late, so ordered room service and relaxed in the room. You will be disappointed if you are looking for great night-life stories...it just didn't happen!

The next day I slept in again (I love vacations!) and ordered room service for breakfast (I really love breakfast in bed after sleeping in!). I took my time getting ready and then decided to head over to Granville Island. There I walked around, had lunch, and just enjoyed another beautiful day!

That night I actually ventured out to dinner and had a great time sitting on the patio, eating, drinking, reading a book, and watching people. I love that I can have such a good time alone!!

The next day, Gess came into town. I decided to go to the Vancouver Art Gallery before he got there. They had a nice Rembrant exhibit, but otherwise I was rather disappointed in the collection.

When Gess arrived we went and had a lovely dinner at Joeys and then walked around downtown a little before going back and relaxing at the hotel.

The next day, Gess and I decided to venture over to Yaletown before heading back home.

We had a nice lunch, did a bit of shopping, and just enjoyed the city. Overall, it was a very nice trip!! I really needed the down time!!