Florida For Christmas

And it's about 80 degrees :)

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.

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Finished with Radiation

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

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

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

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...

...a missing you every day.

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.

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

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

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

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

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

The Beach

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

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

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

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

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

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...

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!

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

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

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

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.