I grieved deeply after Wednesday’s appointment. I cried ugly tears from the gut. I was fragile and felt shattered.
My family grieved.
My sister woke up repeatedly throughout the night concerned about me, concerned about all of us.
My parents were raw with pain.
When I cried in front of my father, I could see that it hurt him so badly and I tried to stop; however, I absolutely could not shield him from my anguish.
My husband held me and tried to comfort me, despite his own levels of fear and sadness.
Wednesday and Thursday stopped us. Despite our best efforts to be positive, we were bodies barely moving, stunned by the sharp pain that life can throw. And when life throws punches, they are hard. None of us are immune.
Friday I started to become a bit more clear-headed. And as I cleared, my family’s level of hope improved.
I was able to see that Wednesday hurt so badly because I felt like I was being diagnosed all over again.
I have had a change in status. The leukemia has already figured it’s way around one target chemotherapy which bumps it up on the level of severity.
I am left with fewer options for treatment. Until now, CML was always some “lucky cancer” (that is what my first oncologist called it) that I could treat with a pill.
Now the pills that remain are absorbed through the GI tract. My history of crohn’s disease is making it very hard for the chemo to absorb the way that it should. The first 4 weeks mimicked a severe crohn’s flare and sent me to the ER for CT scans, repeatedly to my GI doctor, all to come to the same conclusion: I was not having a flare, I was reacting to the chemo.
The remaining target drugs are coated in lactose, which baffles me because so many people are lactose intolerant. It has something to do with how the proteins of the drugs hold together. The doctors have me taking Lactaid with it, which does offer some help. I am also following a strict autoimmune diet which has successfully controlled my crohn’s symptoms in the past. So my GI tract is doing better, not 100%, but better.
The concern is that the doctors don’t know if the Lactaid interferes with the absorption of the chemo.
We know that I am responding as the leukemia symptoms are going away, the fevers and pain are becoming less frequent, my energy is returning. I am starting to be able to enter life again.
We just don’t know how much I am responding, we don’t know if the Lactaid is going to be a problem, if the scar tissue on my GI tract is going to be a problem. So Friday I will have another bone marrow biopsy/exam to see what is happening on a cellular level.
Side note: the first year that I was diagnosed, I had 5 bone marrow biopsies. It is pretty common to have them every few months when you start a new therapy to see how your cells and molecules are responding. If you want to read about my most recent experience, click here, and you will know how to pray for me.
Friday, I came to the conclusion that I don’t know how long I will have it “this good” and I want to make the most of it. I may never need the bone marrow transplant, but I may need it within the next couple of years.
If I need it, I need some really happy memories to carry me through it so that I will have the will to live because it is the kind of procedure that requires 100% will to survive the risks and possible complications.
My husband and I went on a date Friday night and it was so much fun! It was the first time that I have honestly felt “well”. I did not have a trace of fever or pain. We were seated at the chef’s tables so we got to watch the fun kitchen, plus the master chef and the man directly under him came out to visit with us often. The kitchen sent yummy treats to us all night.
It was one of those perfect, special, celebratory nights.
My husband and I were actually able to talk about the scary topic that had been introduced Wednesday. Wednesday had educated him on CML (chronic mylogenous leukemia) and the way it progresses in a way that he had not understood before that appointment, despite his many questions at other oncology appointments. In addition, Wednesday’s education followed a 3-1/2 month relapse and though it was not as bad as it could get, it has been pretty horrible. He saw me get really sick and he has taken care of me. I am so proud of him. Understandably, he does not want me to get that sick again.
He and my sister listened to the options of treatment and heard the risks (which are terrifying) but they also heard the potential of a cancer free life. The benefits vs. risks are a lot to weigh but he is glad to have the full picture.
We don’t have to make a decision today and in that re: this is “the lucky cancer” because there are people who have other types of leukemia, such as AML, that don’t get a choice. They get sick and have no choice but to get a transplant.
On our date, after a couple of sips on a cosmo (I have not had a drink in months, I deserved that one) I was able to broach the conclusions which I had come to in my own mind. We both had tears in our eyes, but we successfully kept them in our eyes, no tears spilled onto our cheeks.
I told my husband that I don’t know how long I will have it this good, that we need to laugh and enjoy as much “life” as possible. I am making a list of things that are important to me and focusing on those things, making sure that I spend my time enjoying my family, our screened porch, my friends in the area, getting plugged into our church and new community, returning to yoga, getting to the beach this summer. Simple things really, but the things that make me happy. Letting go of a lot of frivolous details that only drain me.
I want to use my time wisely.
None of us know how long we have but when you have discussions about which treatment options remain, and you learn what they may or may not do for you; when you learn what you will have to sign away as possible risks, you become aware of how numbered your days are.
And honestly, you realize how fast life has gone and you wish you could go back and have a re-do. Be a little nicer to yourself, not so critical of small imperfections.
I believe that God has a purpose for all of us and that our days will not be cut short until our purpose is fulfilled. However the conversations that I have recently had force you to look at what really matters and enjoy it.
So, I am better. I am not grieving. This has been my most active weekend yet. We had that fun date Friday and then I met my mother for a beginner yoga class Saturday.
I am choosing life.
And the kitchen sent us this yummy desert Friday. I cannot remember the name of but it was some type of french bread pudding that was amazing.
You really never know where life is going to take you but it will continue, as long as you are alive, days of hope and celebratory moments still arrive. God gave us a celebratory weekend after a crushing 3-1/2 months. It has been so fun.
“So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand”