A medical team that works

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

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

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.

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

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

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

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.

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!

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

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

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

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.