I haven't been able to write. I still don't know if I am able to write, but I'm going to give it a try. I'm not certain why it's been so difficult. I think it's a combination of not wanting to dole out difficult news to those that read this and of the memories that flood in every time I open this blog page. But this is my outlet and this is my honesty. I haven't been feeling "inspirational" or "heroic" or "positive." For really the first time, everything has caught up with me.
I have been living with focused blinders on and now am suddenly feeling all the punches from nearly three years all at once. I've gone at this with sheer determination and I know that what I am writing here will come as a surprise to many, but I am asking for your understanding and support. I know that this is not what always appears on the outside. But I believe that it is important for everyone dealing with their own medical issues and for those watching a loved one go through it to understand that we can't be smiling all the time and that it gets very tiring to hold it all together. I think that that's okay. But I don't think that it's easy to admit.
Life has been very difficult over the past month. Things have been more difficult for me to handle than they have ever been. I've been dealing with a lot of anger, frustration, and feelings of defeat and helplessness. I'm uncertain and uncomfortable. I'm unfocused and unstable. I get very sad and very mad and very frustrated. I'm finding it much harder to pull out of the low places. I'm finding many less places of elation. I resent other people and get wildly jealous of their happiness and wish desperately to find my own again. I feel like I cry all the time, but at the wrong times.
I hate being on treatment again. I hate that I have no idea if it's working. I hate the feelings that the Hodgkin's disease is flaring up. I hate the fear of GvHD. The Revlimid has been primarily well tolerated except for tremendous fatigue; I am so tired all of the time but so anxiety ridden that I can't sleep in the way I need to be sleeping. My eyelashes have thinned again, nearly all of them that I worked so hard to re-grow after transplant have been showing up on cotton balls and on my pillow. I again have the eyes of a cancer patient and it's incredibly unnerving.
My husband's mother, Linda, passed away on November 29. Craig and his brother, Eric, were with her by her side. Letting go and watching her slip away over the course of a couple of weeks was heartbreaking, as was deeply feeling how it affected Craig, Eric, Rachel, me, and the rest of her close family. I hate that I am not at my own full capacity to be able to pick all the rest of us up. I hated that I felt I was not the wife I would have been three years ago. I spoke at her service and spoke much with her in her final days and am inspired with how at peace she seemed to have been with her life and the choices that she made in it.
It is also the first Christmas without my grandmother. There is certainly a void there and because I was so sick myself when she died, I have had no closure and no comprehension that she is gone except in the eyes of my mother and uncles. I'm almost emotionally numb to it.
My dear friend also just lost her mother to another cancer battle and I feel like more and more people are getting diagnosed. I'm also deeply affected by the loss of a fellow warrior, a woman who came to visit me when I was in transplant quarantine and who helped to decorate my room with photographs and art. She never made it through transplant and is now gone and the sadness of that is immense. It's terrible and awful and I wish that there was something that I could do to make it all go away.
I had been working out and getting back into yoga, but I've been so tired and so achey that I haven't been able to over the past two weeks. Eating is a continued struggle. I'm afraid that everything I eat will give me more cancer. I'm rarely hungry and my meals have been scattered and unbalanced. My mouth is always dry and my tongue aches and tingles all the time making it difficult to eat and sometimes even to drink.
The MFA in writing graduate program has again had to be deferred, if not completely unattainable now. My life is just too variable. It's too much money and it's too much of a commitment at this point and I don't know that it makes sense to make that investment. I also never did get out to Nevada to see my sister, the mountains, desert, and Vegas strip. The trip had to be canceled so that I could say goodbye to my mother-in-law at her memorial service.
I did move forward with my return to work full time, though primarily from home and with different job responsibilities. It's taking adjustment and a reassessment of myself and my capabilities. It's been difficult to have the faith in myself that all of my team members have in me. I'm doing my best to push through this transition period as I get past the uncomfortableness and into the realization that I'll never be the same as I was before all of this. Everything has been compromised.
I no longer have the capacity nor the energy to keep up a front or to brush things off. I am irritable and irrational most all of the time. No one can say the right thing to me and I'm building my own walls and breaking them down over and over again. This has manifested itself in my relationships with those closest to me: my husband and my parents and most troublingly, myself. No one beyond that would probably even know how much I am struggling – or maybe they do and I just don't know it. I'm only just starting to share these feelings.
My donor transplant was wildly traumatic. I've written about this before, but again, I am only seeing now how painful and scary it was because I didn't let myself get taken down by it at that time. I was in survival mode and it was exactly what I needed at that time and how I got out to the other side. Now that I am here, I have no idea what to do with myself.
I'm sorry to be so brutally honest for those who have yet to go through what I have, but transplant was an inhuman experience. I was literally vomiting on myself, shitting and pissing my pants multiple times a day. I'd get up, throw out my underwear, change it, and have no more energy left to do anything else. I spent my 29th birthday with a mouth full of blood from the severe sores in my cheeks and on my lips. But somehow what I remember fondly is smiling through it, with red stained teeth, at my dear friends who came to celebrate with me. I spent nights so weak that I had to use a commode next to my bed and sometimes I couldn't even make it to that. I woke myself up talking to clusters of balloons and would be so tired that I couldn't hold onto a cup of soup without falling asleep, losing my grip, and spilling it all over myself, too tired to even clean it up.
I came so close to death and to have risen from that – after constant treatment for two years before that – only to come back to find out that the f*&C^ing lymphoma is still growing is enough to knock me to the floor in sheer defeat. Being back in doctor's offices so much recently and having to recount with some semblance of cheeriness to my oncology teams of past that: "Yes, I had the transplant, but the journey continues ... ." or some bs line, is awful. I hate it. I wanted this to be over. I wanted to tie it in a bow and put it all away.
I'm not giving up. I just don't know what I am supposed to be doing. I don't know if I'm going to get better. I don't know how much time I have. These are tremendous unanswerable questions that I suppose we all try to answer. I just want to stop thinking about them all. the. time. I have lost a lot of my self confidence and my emotional stability has taken a big hit. I wish that it was more acceptable to be sad and scared and that there wasn't this tremendous pressure to keep myself so positive for everyone else. What I ask is for people to be real with me. Tell me it's difficult for you too. Tell me that this is normal, that it doesn't mean that I'm weak. Maybe then, I can be realistic with myself.
I have one cycle (21 days) of the Revlimid 5mg under my belt. As I mentioned, the fatigue is intense. However, my blood counts do not seem to have been affected at all. They are actually still soaring since my sister's donor cells gave me such an incredibly active new immune system. All of my counts are in normal range. My platelets are 280,000 – at stark contrast from this time last year when I had to do jumping jacks to get them up to 75,000 in order to receive treatment or the numbers as low as 16,000 this summer.
My liver function numbers are up: this could mean that maybe some Graft vs. Host/Graft vs. Lymphoma effect has been stimulated by the Revlimid. This is what we have been hoping for, sort of. My odd tongue feelings could be a part of that also. And, I've been having strange rashes, hives and welts that wax and wane out of nowhere. None of my doctors know exactly what all of this means but they are watching me very closely. There is so little data and so little precedent that it's all kind of a guess. I continue to see my transplant and lymphoma docs at Sloan every other week. I head back to NYC on Tuesday and we'll talk about starting up the second cycle of Revlimid. After that, a PET Scan to check progress.
I also am on the tail end of a rough cold virus which had me in hacking coughing fits for several days and blocked up my left ear completely. I just finished a course of antibiotics and feel improved but not fully recovered. I am so deeply hoping that it's not another "upper respiratory infection" that turns out to be the lymphoma on the rise – again.
I've also had some pretty incredible back, hip, and sacrum pain and aches. These aches are deep in my bones. I couldn't move without being brought to tears. It was so bad last night that I had to take pain medication, something that I have not done since I was an inpatient during transplant. Dr. Moskowitz ordered me an MRI of my entire spine last week and it didn't show that any tumor was pressing on nerves, which was assuring. It didn't reveal any vertebrae involvement that we didn't already know about. I am aware that much of these back issues may be related to tension. I hope?
I don't mean it to seem that things are awful all of the time. Christmas is my favorite time of year. We have a beautiful tree and have had many enjoyable moments, and I am doing my best to focus on those. I am so appreciative of my beautiful family and friends. My sister comes home for the holidays next week and Craig and I host our annual holiday bash on Saturday, which will bring so many of our favorite people into our home. I feel so much love, especially at this time of year. Maybe that's why this year, at this time, it's been so very hard for me because I want there to be many more to come. I miss my health terribly and it is the only gift I want this year.