Pain pain go away

So my newest issue is pain. I've been having a lot of pain in my left shoulder/mid-back. This has been going on for awhile and I've been working with my physical therapist and massage therapist to address the issue. Well, the pain has been getting increasingly worse. My chest started to hurt too and then the pain seemed to radiate from my the front to the back, with it coming from my left lung. The pain kept getting worse and worse, to the point where I had to take pain medication just to get comfortable enough to try to sleep.

Finally I decided that I needed to call, because the pain couldn't wait for my Thursday chemo appointment. I called my PT, thinking that it might be a muscular issue. After describing the pain, she suggested that I call my oncologist so I called his office and talked to a nurse. She consulted with him and asked me to come in. I cancelled a voice lesson (that's a whole other story) and went in for the appointment. Dr. K said that it could be caused by many things and the pain seemed to be coming from the general area of my lung tumors. So, he sent me to get a CT scan. He order the scan to look at my heart too and rule out a pulmonary embolism. The waiting was torture, but I eventually heard back from Dr. K--the CT really didn't show anything. The tumors looked similar, with one looking slightly better and another looking worse, but nothing significant to tell us anything. So, the prescription was to wait and see and continue to take pain meds as needed.

The next day I saw my therapist and explained what had happened. She said that anxiety could also be causing the pain or contributing to it. So she suggested some relaxation exercises and visualization exercises. I'll try these because I definitely have issue with stress and anxiety.

Then, today I went to my rolfing therapist. Her thought is that the pain could be from my very, very tight chest muscles. So, she spent an hour working on that area and ouch! The area is still hurting, but I do feel like I can breath a bit easier.

I think that there is still something wrong and I'm not sure how we are going to figure it out, but I'll keep trying things to try to get this pain under control. I am taking the pain medications because my body does not need that stress.

I see Dr. K tomorrow for chemo, so we will definitely discuss the pain and hopefully come up with a plan for managing it.

I am also going to talk to him about the results of the CT Scan. I am glad that there wasn't a lot of new growth, but it is also discouraging that there wasn't significant shrinkage. I've only done 1 cycle (3 total infusions) and our original plan was to rescan after 2 cycles. I'm going to ask if that plan will change at all based on this new scan.

Nothing deep here today, just a report about how I'm doing.

Accepting Unknowing

I cannot understand why I have cancer. I don't understand why my husband died. I don't understand why there are millions of people starving in this world. I don't know why evil people are allowed to prosper while good people suffer. I don't understand this and that is hard for me. I hate to hear "everything happens for a reason" because it is so hard to see what that reason could possibly be. These things simply do not make sense. And I have to accept that I am not going to know and try to find some sort of peace that with unknowing.

I think. A lot. I think about the same things over and over. I take not knowing as a challenge. I do research. I make charts and spreadsheets. I search for the answers. This is the way that I work. And in a lot of ways it has served me well. This way of thinking made me a good student and made me a good lawyer. But it doesn't make me a good widow or a good cancer patient. I have searched and search for the "answers" and they are not out there. So I know that I need to find a way to sit with this unknowing and not obsess about trying to figure out what I did wrong or how I could have done things differently to get a different result. I need to remind myself that I did not give my husband CF. I did not make him die. I could not save him. I did everything that I could to be a good wife and give him a good life while he was here. I did what I could and that has to be enough. I have to remind myself of this whenever I doubt myself.

I must remind myself that I cannot understand why this happened and that there is no way that I can. I have to remind myself that it is okay if I don't know. It happened. Maybe there is some sort of knowing that I will have after death, but for now I have to accept that I don't know. This is not going to be easy for me and it will likely require daily attention on my part. But I am going to try to embrace the unknowing and stop fighting against it. Maybe that will help give my mind a rest and let me have a little more peace surrounding the issue.

Dark Days

The last few weeks have been difficult. I feel like I am slipping into a depression and that always scares me. I am seeing a therapist and working on it, but it is still so very hard. It is hard because I have so much grief that I am still processing or haven't even begun to process. Losing a spouse is not easy and even under the best of circumstances, the grief process is long and difficult. My cancer diagnosis has thrown a wrench into all of that. There are days when I struggle to get out of bed. Fortunately, Beauty needs to go outside a few times a day so I have to get up and get outside for a least a little bit. If it wasn't for her, I think that I might really struggle to get out of bed.

I miss Gessner so much these days and it seems like I am encountering more triggers. I still can't believe that he is gone. There are still mornings when I wake up and reach to the other side of the bed, only to be reminded that he is not there. Those are horrible mornings. Last night I had a rare happy dream where I just saw his smiling face. It was just what I needed after some very rough days.

I think a lot about where he is and what happens after a person dies. I grew up believing in heaven and being told that everyone will have a mansion in the sky. Now, it is so much more difficult to picture that. There are days that I definitely feel Gess's presence. Whether this is real, or just my imagination giving me what I need I don't know. But it is comforting. I wish that I felt him more. I wish that he could be here to hold me. That is something that I miss the most--having someone to just wrap his arms around me and pet my hair. In those times, it felt like no matter what, everything would be alright as long as we were together. Somehow having someone who loves you unconditionally and with so much passion, makes everything else seem more doable. Now, on those lonely nights, I am alone and there is no one to hold me and tell me that it will be alright. There is no one that loves me the way that Gess did and that leaves a huge hole in my heart.

And these are dangerous times. When I have a bad night and feel alone, I spiral to a place where I believe that I am unloveable and no matter what my "logical" brain tells me, I cannot accept it on an emotional level. On an emotional level I feel like I am hurting people more than I am helping them I worry that I am just hurting people by being here and my instinct is to run away. I know that is not the answer and that it would in fact hurt my loved ones more, but there are times when the pain is so severe that running seeming like the only option.

This process is exhausting and I am worn out. I take it one breath at a time and am some how holding it together--if only by a very thin string. I think that I might need some duct take soon :)

Four

It's been a long time since I have updated my blog, mostly because I don't have any good news to report, only more bad. Usually I write to help process through the emotions, but have avoided writing for weeks, even though I actually have a lot to say. I think that it is a protective measure--the mind and body can only handle so much at one time. The mind regulates the amount of pain that it can take at one time to protect itself. So I think that my lack of writing has been, at least in part, self-preservation.

Since I was first diagnosed in April 2011, there was a suspicious spot on one of my ribs. I had been skiing--and falling a lot--just a few weeks before diagnosis and the spot was consistent with a bruise. The location of the spot made it difficult to biospy and the treatment plan would not change regardless of the results, so we went ahead with treatment and hoped that it was a bruise. After lots of chemo an my bilateral mastetcomy the spot on the rib was still there, ruling out the bruise theory. Still it was a bit of a mystery because the spot hadn't changed much during the chemo. The spot looked slightly brighter on the images, but not so much that it was conclusive. So, we decided to irradiate the area while doing the radiation to my chest wall and lymph nodes. Thanks to a fancy new radiation machine and a great radiation oncologist, they were able to do this without damaging my heart and with very little impact on my left lung.

I did a total of 38 radiation treatments, along with more chemo. I finished that round a treatment at the end of Novembr and took a much needed break from treatment. The radiation really wore me out and did a number on my skin. I try not to take pain medication, but by the end of radation I need narcotics to ease the pain.

Thankfully my skin healed relatively quickly after the stop of radiation and chemo--it's amazing what happens when they stop pumping you full of poison and burning you with radiation! Unfortunately, you have to wait for awhile to let the body recovery from the radiation to rescan and see if it worked. My oncologist decided that about 6 weeks was a good time to rescan. So I took off and visited my dad in Florida and Gess's sister, niece, mom, and grandma in Colorado. The trips were great and it was a good way to keep my mind off the cancer. The Florida sun was also incredible for my mood. I loved spending time at the beach and just relaxing.

When I got back from vacation I saw my oncologist who said that my blood counts looked good and thought that I could take another month or so off to let my body get even stronger and recover more fully from the barage of treatment I had been through. My oncologist explained to me that my body had not had a chance to recover from even the first round of chemotherapy because of the continual course of treatment. Needless to say, I was pretty excited. A month of life without treatment sounds like heaven! The only caveat was that I need to have an MRI to check the status of the spot on the rib.

I had my MRI on January 20th, a Friday morning. I felt guardly optimistic and was nearly giddy about my continued "cancer vacation." I also had my first post-chemo haircut...meaning I had enough hair to actually have a cut. I saw a great stylist who cleaned up my curls and also gave me a little sassy red. I walked out of the stylist's chair feeling good. As I walked into the changing room to get ready to leave, I checked my phone to see a message from my oncologist on my phone. I checked it and my heart sank. My oncologist apologized for leaving the news on my voicemail, but knew that I was anxious to get the MRI results and he had to step out of the office. The news was bad--the MRI showed a spot on my lung. It could be an infection, he cautioned. But it could also be the cancer spreading. The spot on the rib also looked somewhat improved, again, not good news but still inconclusive because of the radiation side-effects. I immediately called my oncologist back and talked to him briefly. He said that I needed a needle biopsy of the spot on my lung and we scheduled that for the following week.

The next week the full MRI report was in and I saw a copy when I had a follow-up with my radiation oncologist. He also showed me the MRI films and I saw the tumors. There was not just one as was noted with the radiologist's preliminary telephone report, but at least five--four in the left lung, one in the right lung. I asked my radiation oncologist if an infection coiuld present with this many spots and with them in both lungs. He said that it was possible, but not extremely likley. I could tell from his face that he thought that it was cancer. My friend Sandy thought it was cancer too. She arranged to be at my next oncology appointment.

I had the lung biopsy--not a fun procedure--and then played the waiting game yet again. I knew thta my oncologist would call immediately if the pathology came back negative, so by the time I walked into his office, I knew that the result was positive and he immediately confirmed my intuition. The cancer had spread to my lungs. It is stage IV. The oncologist also said that rib lesion was cancer--so I was stage IV from the beginning.

The statistics for stage IV breast cancer are not good. The median survival is about 2 years. And I've already spent 10 of those months, meaning I could have about 14 months left. The range for survival is wide, however, with people living longer or shorter. My oncologist said that there is a chance that I could live for awhile with the disease if we find the right chemo. But the reality is that the prognosis is not good. My cancer has proven to be very aggressive and has continued to grow despite aggressive chemo treatment. There are still some more drugs that we can try, but there is a good chance that they won't work. I'm not giving up hope, but I am also realistic about my options. I do not want to live the rest of my life being sick from the chemo. I want to enjoy the time that I have left with my loved ones, but I'm also a fighter.

For now that means that I am going through chemo. It does make me sick, but it is bearable for now. I had 3 weeks of treatment and now have one week off. Next week I start another cycle. After that I will have another scan to see if the chemo has worked.

New Painting

Having one of those days

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

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.