As I sit here today, I have had my second immunotheraphy treatment and have to wait until September 1 for the next treatment. Although I have had two treatments, my symptoms keep getting worse. Every day I wake up weaker than the day before. Except for my emaciated chest and arms, every part of my body is now swelled to extremes. While I wait to see if the treatment will work, the cancer is relentless and continues to advance and attack my body. I cannot sleep. I cannot get comfortable no matter what I do. My only escape is when I doze. I dream about being sedated for three weeks until my next treatment to escape what has become almost unbearable to me. This has happened fairly quickly. Alan looked at his credit card bill and only one month ago we went out to dinner. Since then, except for doctor visits we have not been anywhere. It is somewhat hard to believe this is happening so quickly. Frankly, based on how awful I feel, it seems forever since I felt even a little normal. What I do feel is that I am dying, agonizingly, by inches. Every day I hope that I will at least stabilize. So far, that has not happened. Instead, every day I am a little worse. I still shower and dress myself, but every day that becomes more challenging. I am also so short of breath from the pressure of the swelling that even taking a few steps leaves me breathless. In the midst of this, I am also losing vision in my left eye. I am supposed to see the eye doctor, but I feel this is just more of an insult. The suffering from the cancer seems to be enough without adding to it.
We obviously are hoping for a miracle with the immunotheraphy. If it does not work, however, I think I am out of options. At my appointment Tuesday, the social worked talked to Alan and I about hospice. She was not suggesting I go into it yet. She was, instead, getting us ready to think about our options. Alan and I have also discussed getting some personal help for me. As a person who has always been strong, independent, and able to do what I put my mind to, it is a new experience to feel so helpless. I no longer feel comfortable being alone. Luckily between Alan and my kids and friends, I have not.
Knowing I had advanced cancer, I knew there would be tough times. I did not envision just how horrible this would be. Of course, Dr. P told me the amount of fibers in my belly, which prevent drainage of all the liquid building up there, are among the worst he has seen. Lucky me. I did so well for so long, that this sudden onslaught has been somewhat a shock to me, my family and friends. My plans for Napa, for going back to Utah, for returning to South Beach, are all on hold. I hope to get well enough to return to Utah but I told Alan the other day that it was possible I would not see our house there again. I am not being morbid, just realistic.
Alan and my kids are wonderful. Their care for me is amazing. Alan never stops and he cries with me every day. Sara and Alex have both cared for me, and both had to help me clean up after I got sick. I have spoken to them about the reality of what I face, and how much I love them. I watch their faces and the pain and stress they feel watching me suffer is almost too much to bear.
Every day I cry over this situation and the fact I am surviving, but not living. The surviving is not fun. My family and friends sense how bad things are, and I have had a constant stream of visitors. Sometimes I doze while they talk. Yesterday I slept for 30 minutes while my cousins Denise, Clarice and my friend, Jen, visited. Other times, I am able to talk and their visits provide a welcome distraction. My kitchen looks like a florist shop with all the flowers that have been sent or brought over. Every day I receive a slew of cards encouraging me. Every one I read reduces me to sobs. This is not a bad thing. The love and care is constant. I talk to Deb and Judy every day. I receive numerous texts and messages telling me to stay strong and that my friends love me. Yesterday, my friend Danielle told me how important I was to her as she gently massaged my legs. Diane has returned again and again and is my source for feta cheese, one of the few foods that taste good to me. I wrote in the past that the love people express, the feelings they express to me, and their blanket of support, is a silver lining of cancer. It does not take away the suffering, but it reminds me I am cherished.
I know this post is a dark one. I felt I had to describe how it feels to be this sick. This does not mean I am giving up and telling the cancer you win. It just means I am realistic and want to convey just how difficult this struggle has become. I refuse to say this is the last time I will post. I refuse to say it is over.