It is Friday and I am tired. This is not the tired one gets after a week of 9 to 5 at the office with your cohorts. This is something more. It is the tired that comes from carrying a weight 24/7. Sometimes I think back and I have difficulty remembering life before cancer. What was it like when we lived our lives ignorant of the effects this disease brings into a family? What was it like to envision how we would spend our retirement? What was it like? I don’t know anymore.
Things have been hard around here lately as you may have guessed from my tone. C has not been able to eat or drink much over the last two weeks due to a combination of nausea, pain in her esophagus, and a general bad taste in her mouth. Consequently, she has lost more weight and is very weak. In addition to the lessened input, there has been no “output” other than urine in two weeks. Her systems are shutting down.
Yesterday, at a regularly scheduled appointment at the clinic, she tearfully told the staff that she did not want to do this anymore, that the pain had grown to be too much. At a hastily convened conference between C and me, her transplant physician, her case worker, and our favorite PA, we stated that it was time to evaluate our options. After doing so, we chose to stop taking the current chemotherapy drug and much of the prophylactic medications that form the endless lineup of pills that C must try to choke down during the day. We also chose to re-enter the hospice program and to focus on comfort rather than fighting the progression of C’s myeloma.
This was a particularly difficult decision for C. Anyone who has met her would know immediately that they were in contact with a person of immense will and determination. She has shown these characteristics over and over again during the last three and a half years. I know of no one who has gone through what she has. Her disease is one that causes great pain and the treatments for it are no less brutal. C approached this battle like she has with any challenge that stood in her way – with courage, determination, and a will to succeed. She has fought a foe that was relentless and devious. Throughout, she has been uncomplaining and without self-pity. It was therefore, a bitter pill to say “enough.”
One of the things that she and I have talked about late at night in those moments we get to share before sleep comes, was her fear that our children would look back on this time and feel that their mother “gave up” the fight of her life. This concern for her children, their future psychological health, and their view of her legacy is a very strong motivating force. I do not pretend to know what sources of inner strength have allowed C to make it this far, but I do know that this is one of them. She does not want them to believe that she is a quitter.
So, to say in public, to the medical team that has taken care of us through all of our ups and downs over the last few years, that enough is enough, was particularly hard for her. There were many times when the pain caused her to cry out, or the endless nausea and vomiting and diarrhea left her wrung out and lying in misery on the hard tiles of the bathroom floor, that she had voiced her resignation to me, in private, in the depths of the dark nights. She had surrendered to me over and over, but when morning came and the children had to be seen off to school, she somehow found the reserves to rise again and return to battle.
As I write this, she is upstairs sleeping (I hope). Last night, I called the members of her immediate family to tell them of our decision. It was exhausting. I used the phone next to the bed to make the calls so C could hear what I said and each call was like a small surrender that took something out of both of us.
This posting is easier to do in some way. I suppose that to some extent, I am writing it to myself – trying to set my thoughts in order – trying to make peace with what has come to be. We do not know how things will go from here. Timing is uncertain. What I do know is that I want C to be without pain and discomfort as much as is possible.
We are trying a new pain medication that comes in a patch that slowly releases medication over a 72-hour period. If that works, it should help with her constant bone pain.
As always, I will keep you up to date via this website.