There are days which demand an update. They don’t gently nudge you or ask you to please just take a second to do a self-survey; they shove reality in your face so harshly that no matter how hard you try to skip around it, you must step back and take an inventory of how you actually do feel about all that has transpired.
Today was one of those days.
I have been intending to write an update every day since my last post but I have been so busy healing and returning to life that I had not carved out any silent time to reflect or write.
Today, all surrounding noise sounds far away and muted against the loud pulse of my broken heart.
I am in the process of switching oncologists. Our recent months have been filled with many trips to the hospital and cancer center. There are several excellent oncology practices where we live and we have decided to move to a practice that is closer our home. We are trying to simplify where we can.
Part of that process includes the appointment that happened today. I had to see the Bone Marrow Transplant Team.
I actually would have seen them whether I was changing oncologists or not because I have had a change in status and treatment.
My father and I went through a similar day back in 2007 when I was first diagnosed with Chronic Mylogenous Leukemia (CML).
Today, 8 years later, my husband and sister accompanied me throughout the morning’s events . The team is phenomenal. We were there for 3 hours and had “our own” private, comfortable conference room with couches (and Kleenex conveniently placed for wiping teardrops). The Physician’s Assistant, Doctor, as well as other specialists met with us in that private room and occasionally pulled me out for an exam.
The doctor spent a significant amount of time with us. He gave us an extensive education on CML. He was informative, compassionate and patient.
I take what is called target chemotherapy. I was on Gleevec for 7 years (2007-2014) and in remission for 6 years. The target I am taking now is called Sprycell. The side effects of target chemotherapy medications are generally less harsh than traditional chemotherapy.
Now that I am on the second target drug, the doctors are being more frank with me about the prognosis of CML and the reality that this drug will not carry me for decades.
I will be 43 in a few weeks. The concern is that if I stay on the target therapy, I will still be “young” when it stops working.
For all we know some other wonderful target or solution may come out tomorrow. But for now, we can’t just ignore reality.
So, today the doctor started a conversation that needed to be started in my family.
As wonderful as target chemotherapy is, it is not a cure. Outside of a miracle, the only “cure” for leukemia can be found through a Bone Marrow Transplant (BMT). He was very honest about the scary risks and statistics that accompany BMT and I am not going to write about them right now.
side note: y’all caught a tiny glimpse (via this blog) of how badly I felt when the leukemia started to get just a little active again—that was not fun, that was not acute either. I was very sick and acute only means sicker. I know it is impossible to understand this but when everything is hurting, when you get super sick and absolutely nothing takes the pain away, questions about fatality become less significant than questions about “how much pain”. Again, I understand that it is nearly impossible to understand that statement unless you have been in that much pain. My family understands because we have walked through this together, so when the doctor is giving statistics about fatality and also giving statistics about risk and complications, I have to weigh everything and think through what I can handle.
It is hard to process all of the information because I want to live a long, healthy, happy life. And yes, of course I know that pain is part of life but there are limits for everyone.
I thought I was taking it all pretty well until he asked me to answer questions. When my voice caught and tears fell, I realized how completely crushed and overwhelmed I felt with the information and topic.
None of us know how many days we have on earth. There are circumstances such as illness and treatment options which force us to think about our amount of days; and it is almost impossible to be unfeeling and totally rational when sorting through the issues that we had to discuss today, at least in one sitting, and the doctor knows that, which is why I did not have to make any decisions.
But we are talking. Right now we are sorting through the appropriate treatment.
I have been on Sprycell for 6 weeks. The side effects were very hard on me during the first 4 weeks and now, little by little, I am tolerating it better each day.
Next Friday, I have to have another bone marrow biopsy.
They will be looking to see if I am responding to the new chemotherapy on a cellular level. I “feel” like I am responding to it and my husband says that he has seen a definite improvement.
I was even healthy enough to go “out” on a date for Valentine’s Day and that was such a treat, we had not done anything like that in months.
When you have cancer, you have these moments that are incredibly vivid and surreal because when they are happening, you just can’t quite believe that you are living these experiences; these are things that you read in a book or saw on a movie, but not things that you have gone through or expected to go through…
Today was punctuated with such moments.
One of the biggest and most special of those moments was that my sister and I were type-matched to see if she is a donor match for me.
So many memories are attached to us testing for type-match:
Back in 2007 when I was first diagnosed with CML, sistah called me to tell me that she would test to be a donor match. She told me that she would do it before I ever even had to ask.
In 2009 (after I already had a diagnosis of leukemia) she and I decided to watch My Sister’s Keeper and sobbed, holding hands, through the entire film (we set ourselves up for that one).
And then, just the affectionate jokes she and I have have shared with one another about donating over the past 8 years.
Until today, I was not sure of how the process went, so in my imagination, it was always going to be her alone at some doctor for the blood draw.
But God gave me such a gift today. He allowed us to go through it together. First they drew my blood and then we went around the corner to her little cubby and I was there while my nurse drew sistah’s blood samples.
It is a very unusual experience to hold onto one side of a person while a nurse draws cells from the other side of that person, during which time, all 3 people are hoping that the samples reveal a lifeline.
I can’t imagine how it felt to be sistah, the gravity, because I know she wants to fix everything. That must be a lot of pressure and I will do everything I can to make sure that she understands how much her willingness to be there, and share that moment with me is enough.
For once I did not have my phone and I wish I had because there were Bible verses posted all over the walls in that blood draw area directly across from us about strength. I thanked God for those verses, I needed to see them this morning.
So, today got the conversation going. My husband said it best–that in his mind, he always assumed that maybe one day we would have to change something, like in 20 years. However, reality hit him when I got so sick so fast, and it was only after 7 years of Gleevec. It was very scary and heartbreaking to him, he does not want to be taken by surprise again.
We are grateful for the excellent education and care that we got today.
Lots to think about and pray about.
The next things:
- Bone marrow biopsy next Friday (God please help me get through it)
- Results from the bone marrow biopsy…am I responding on a cellular level to the new chemo?
- Is my sister a match?
- Our long term plan…?
If the bone marrow biopsy shows that I am responding to the target chemo and the doctors say I have time to make decisions later, I believe that I need to get stronger mentally/physically/spiritually before doing a BMT.
Maybe I will never need one.
But if I do need to have one, I need to be in the game, like totally 100% full of fight and I am not there yet. The past few months have beaten me pretty badly. I am hoping that the bone marrow comes back revealing that I am responding well. In my dream world, the results will show that my sister is my match and I hope that the specialists say that I have time to make decisions.
In that case, I need a good sunny summer to get strong. I need to laugh and get connected in our new community before taking on any huge treatment change.
It is snowing and my husband is home. He is building a fire and we are going to try and turn my sadness around. Today was tough. I knew we would have the talk, but I really did not think it would be so hard.