Wednesday we saw the oncologist and got the results we have hoped and prayed for: the leukemia which was in remission for 7 years had figured out how to work around Gleevec and started building those leukemia cells again. Amazing that it can do that, but it can and sometimes succeeds. So now I am on the newer, more advanced target chemotherapy.
When I was initially diagnosed with chronic mylogenous leukemia (cml) in 2007, my oncologist sent us to a specialist, the transplant oncologist who would see me if I ever needed a bone marrow transplant. At that time, he told my father and me that most likely I would eventually grow resistant to Gleevec and then we would move to a second target drug. He reassured us that the field is always improving and making medical advances. I did not want to hear it. I was very, very, very sick and the thought of a relapse or resistance was more than I could bear. I wanted to be healthy, I wanted cancer to be gone and I decided that “relapse” and “resistance” would not even be words in my vocabulary. You think I am kidding but I am not.
I truly avoided thinking or saying those words over the past 8 years.
If I happened to stumble across a blog or a story about a person who did experience resistance I chose to ignore it, I refused to read it; I proclaimed aloud that I am healthy and that what I had seen would not be part of my story.
I am a big believer in positive affirmations. Our brains process and ingest the things that we say, read and hear. I believe that we are drawn to the confessions and images we allow ourselves to be surround by, so I intentionally surround myself with plenty of positive words and images to nourish my spirit and brain with good stuff.
…In doing that, in the positive thinking, the positive confessions and proclamations that I am healthy; in refusing to use words such as “relapse” or “resistance”, I think that I believed that I could prevent cancer from coming back into my life.
Ironically, by the time that all of this stuff started to happen again, I hoped and prayed that the diagnosis would be the very diagnosis I had feared for 8 years–that the leukemia had figured it’s way around Gleevec.
I still don’t call it “my leukemia”. I don’t want to own it, so I just call it “the leukemia”.
But I am not scared like I used to be. Of course I am happy that it was the simple explanation. I did not want another diagnosis. I really want to get well and I have a “normal life” again.
As with any difficult experience, some good things have come from the recent trials. One is that I can read other people’s cancer stories again. I had blocked them out completely. It is a very common and understandable way of moving forward with life after fighting hard to live or losing a loved one to such a cruel disease; people often have to distance themselves from cancer stories. The stories are just too close to home.
However, this was my second time to go through it and it was not as severe. I have been sick but I have not been anywhere near the level of sickness that I was at in my 30’s. My life has not been ripped from under me this time. I have not been introduced to new words or undergone tests for the first time, I am used to the medical drill, so this time it has not been as frightening.
When you are going through something really hard: be it cancer, an autoimmune illness, neurologic disease, orthopedic pain, a rehab course following an accident or addiction; when you are in that state where you are fighting tooth and nail to get through it, and your days revolve around trips to the hospital, physical pain and fevers, scary procedures, cold hospital rooms, test results: It is dark and confusing. Out of necessity, you start to find some sort of schedule or system, a survival mode to get through the sheer ugliness of what is happening because what you are seeing is absolutely abnormal.
So you are living in a strange place, and my gosh it must be hard for friends to understand that place as their lives are continuing on the “normal plane” while you are suddenly living in a morbid place where positive moments are highlighted by decreased fevers or pain ratings less than 7. A place where most of your days are marked by gruesome images and even when you try to make it pretty, it is just not pretty. But because it is suddenly your normal, it is very hard to not try and make it everyone’s normal.
It is a weird place to live. But it is real and it exists for anyone who is fighting for life.
I had chosen to ignore the survival mode that comes with people who are in the fighting to live phase. I can’t promise that I won’t do it again however I suspect that I will be more available this time around because this recent experience has not been sheer horror for me. I have also been reminded of how much outside support is crucial for survival.
Recently, I read a woman’s experience where she talked about how her healing came when she embraced the very thing that hurt her so badly. I don’t embrace cancer. I just don’t. I don’t embrace chron’s or migraines or any illness. But I do know that we live in a messy, broken, imperfect world and I embrace my faith in Christ to carry me through the pain. I embrace the lessons that I have learned through the pain.
I am happy to learn that this is the same, treatable chronic mylogenous leukemia (cml). At this point, I am still pretty sick, probably more from the new chemotherapy than anything, but I am having moments of strength, moments of decreased fevers.
This morning I am reminded of a verse out of Ecclesiastes, and a ~Groovy~ song by The Byrds
“Ecclesiastes 3 New International Version (NIV)
A Time for Everything
3 There is a time for everything,
and a season for every activity under the heavens:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.