For the last few months, many people have asked how long I will be on my chemo-pemetrexed maintenance. My flip answer would be "until the end of time." The end of time came quicker than I expected and in a way I didn't expect. It turns out it isn't quite the end of time, but the future treatment options are limited.
Treatment fails in different ways. While we often focus on tumour progression as the way it happens, there are other ways. I have been through failure a few times, but this time, it feels different. Let me explain. The odyssey has unfolded slowly over the last several months.
, it came back My oncologist scheduled me at the beginning of November for a follow-up CT scan. The intent was to see how my current chemo was working. Part of the CT process that I have never given much thought to is a check on creatinine levels., The purpose is to make sure that my kidneys are functioning properly. This time it came back as slightly elevated. After a discussion with my oncologist we determined that it might have been dehydration. So I worked hard for a few days at drinkinCombinedg lots of water. Then the lab rechecked my levels. It was still elevated but coming down.
Nobody seemed too concerned about it, and we went ahead with the scan, which was largely clear. Another was performed, and the levels rechecked of the creatinine level, and the levels had climbed. Now it was worrying. My oncologist chose to delay the upcoming chemo. The suspicion was that one of my BP (blood pressure) medications was causing the problem. In combination with the contrast dye from the CT scan, it was a trifecta for trouble. Apparently, kidney issues from the chemo are rare. So I stopped the BP med and worked hard on hydrating. And then retested. Slightly higher yet again.
He agreed to let me travel to the Action Plan Summit in Toronto. He warned me to stay active on the plane and stay; he added other tests. The extra tests all showed normal values. However, the oncologist covering for my regular oncologist wasn't comfortable with the continued high level of creatinine, so she didn't allow the chemo to proceed. hydrated. The plan was that I would retest on my return and then resume chemo.
The retest still showed a high level. Trying to get to the bottom of the problem he added other tests. The extra tests all showed normal values. But the oncologist covering for mine wasn't comfortable with the continued high level of creatinine. So she didn't allow the chemo to proceed. She started the discussion about what comes next. This was a discussion that my oncologist and I have been having in an idle fashion for the last few months.
Docetaxol is the next step. When your oncologist opens the discussion with "you will lose your hair," you know the side effects aren't going to be good. I have been finding the pemetrexed side effects challenging, and this will be much more difficult. They are tolerable, but they will severely cut into my quality of life.
I have been struggling to eat. It's hard when everything tastes like metal. I am enjoying sour foods and grapefruit at the moment. There is a carton of chocolate ice cream in the fridge that I have barely touched. They are tolerable, but they will severely cut into my quality of life. I have barely touched a carton of chocolate ice cream in the fridge. is part of struggling to stay hydrated and is part of the whole picture.
I haven't been able to run for about two months. In June, I was at a 6 min km, which is the qualifying pace for a marathon. But when I resumed running after my abscess, I was at an 8 min km. It slowly worsened with shortness of breath until I was at a 10 min km. I can walk a km in 12 minutes, so after a few attempts, I gave up on running and added longer walks to my evenings.
It has been quite a mental blow to lose that functionality. I have carried on with my online High-Intensity Exercise class, but I have had to reduce the amount of weight I lift and modify some of the workout so that it isn't quite as intense. Recovery time is the primary issue slowing me down.
I'm waiting for a phone call to schedule the new chemo, but since I haven't received it, I suspect I'll be waiting till after the holidays. All that leaves me in a mental limbo. I have to make a conscious effort to stop thinking about the rogue cells running rampant in my body. It makes it hard to concentrate. I'm finding it difficult to do anything but follow through on existing commitments. I'm not taking repeatedlyon any new creative or advocacy work.
Again I fall back on routines to keep me moving: morning journal writing; walks morning and evening; keeping my email inbox close to zero. All these practices keep me sane. I'm saying good-bye to my final web client which brings its own grief.
Jazz Vespers at Christmas time brings its own unique comfort. I heard a Christmas song I had not heard before. "Christ Child's Lullaby" brings comfort as I have listened to it repeatedly for the last few days. I'm not sure if it is the simple Celtic melody or the lyrics that point out the love that God has for us that captures me. (https://music.youtube.com/watch?v=fwci_shYTgk)
My love, my treasured one are you
My sweet and lovely son are you
You are my love my darling new
Unworthy I, of you
Alleluia, Alleluia, Alleluia, Alleluia
Your mild and gentle eyes proclaim
The loving heart with which you came
A tender, helpless tiny babe
With boundless gifts of grace
Alleluia, Alleluia, Alleluia, Alleluia
King of Kings, Most Holy One
God The Son, Eternal One
You are my God and helpless son
High Ruler Of Mankind
Alleluia, Alleluia, Alleluia, Alleluia...
Thanks for your prayers, thoughts, and continued support.
Holiday blessings to y'all.