Last Tuesday my parents, sister, husband and I met with the Bone Marrow Transplant Team. The appointment had been on our calendar for a few weeks and it had lurked in our minds ever since the first appointment, February 25, 2015.
The purpose of our meeting was to review the results of my most recent bone marrow biopsy/aspiration and discuss our next step in my plan of treatment.
Our first meeting was crushing. You can read about it here. At that time, it sounded to all of us like a bone marrow transplant would be in my (not too distant) future. During that appointment my sister was type matched against me as a possible donor and we learned that she is a great match for me.
Since sistah and I are a good match, she has new questions about the procedure. We both brought our lists of questions for the doctor to Tuesday’s meeting.
During our meeting, I remember looking over and seeing her list on her lap. I remember noticing how it looked so similar to my list in handwriting and in outline. Both of our lists were actually pretty short however in our personal world the lists felt long and heavy with emotion.
My prayers preceding the appointment were for wisdom.
I asked everyone in my family to please listen closely to the doctor. I requested that they also ask questions because the decisions are too hard to make on my own.
From what I understand, God has a pretty good memory, however I spent days pleading with Him to please speak clearly to us during the meeting; I begged Him to make it very obvious as to which course we are to take.
As with everything else that requires order, there is a system in place that guides you through the Bone Marrow Transplant meetings. Those systems are a blessing, they provide a sense of routine and orientation while you are immersed in a microcosm of disorder marked by sad images.
When you approach the doors to the Bone Marrow Transplant Unit you see a sanitizing cart which holds bottles of hand sanitizer and boxes of masks which you put on; everyone wears a mask because most of the people in the unit are in the process of going through a transplant; their immune systems are wiped out and the masks help protect them from infections.
After you check in, you and your masked family sit down in the waiting room. The nurses come and take you back to the lab area where you are weighed, and your blood labs and vitals are taken.
After 14 years of doing the blood labs and vitals routine you would think that none of it would faze me anymore but I have actually had an opposite experience; now I look away when they draw my samples.
Somewhere along the timeline of the past 14 years, I started looking away and I feel a bit queasy. Almost every time, my mind drifts to images from the scariest and saddest blood draws (between crohns and leukemia, I have had some very bad experiences).
It is embarrassing to feel so vulnerable when the needles come out. I usually criticize myself out loud and say that you would think I would get tougher over the years but I have become more sensitive to the labs. They always tell me that it is actually more common than I would imagine.
I try to take comfort in that as I look away, stare at their scrubs, ask about their kids, boyfriends, spouses.
The nurses at the Transplant Unit are a special group. I know that their days are stressful however they manage to hide their stressors. They make you feel like you are their most important moment. They remember who you are and they find the energy to exude care and joy at seeing you again.
Whenever they see me, they immediately ask where my sister is (they have met her), they find something–anything–to make me feel calm.
After the labs, they escort me to a private room with couches and Kleenex (because you usually cry: cancer and other serious illnesses usually involve tears).
Then they bring your family into your private room where you all find your place on the couches and chairs and you make idle chit-chat, about anything but the big thing that lurks ahead, the big conversation.
Then the PA comes in and catches up on recent medical changes. She is thorough, noting anything that has changed.
I brought my lab work from the recent trip to the ER as well as recent oncology trips so that they would have my most recent blood counts.
She then pulls me into a private exam room where she does a clinical exam. Those exams always feel weird. They feel weird for crohns, for migraines, for leukemia (and I am sure that they feel weird for whatever illness a person faces).
You are grateful for the exam, you are hopeful that they don’t feel some new or strange lump, you hope they don’t hear some strange rattle in your lungs.
There is this part of you that, I don’t care who you are or how strong you are, feels isolated and very far away from the person you thought you would be. I do think that is part of what makes a patient stronger, learning to be “ok” during the sad and out of order moments.
Tuesday, my clinical exam was all good.
The PA led me back to our family room and we did more idle chit-chat. Then our Bone Marrow Transplant Oncologist came into the room.
Everyone…did the audible inhale...
That appointment could not have been more different than the last appointment.
He came in and told us that I am responding tremendously and rapidly to the new chemotherapy, Srpycel. I am almost in complete remission on the molecular level and he fully expects complete remission within the next 6 months.
He tested my bone marrow samples against many things and found that yes, I have developed a resistance to Gleevec (which had worked for 6-7 years). He also found that I do not have other bone marrow diseases which had been a concern which I did not discuss on this blog.
I have been on immunosuppressant medications since I was diagnosed with crohn’s in 2001. Those medications, along with diet and lifestyle changes have saved my intestines. However they can cause some other serious illnesses. I am now on a very low dose of maintenance medication and I am no longer in and out of the hospital for crohn’s flares. I am always working toward being medication free, but at this point, the maintenance medication is necessary.
The transplant specialist was able to rule out those illnesses.
He was able to confidently say something along the lines of: the risks of a transplant are xyz, my history of crohn’s only complicates the risks. He said that we know that I am resistant to Gleevec but there are 4- 5 (?) other target chemo therapies that you can try. I am having a tremendous response to Srpycel which he anticipates will work for me. He said that down the road, if I need to try something else, there are other target chemo therapies for me to try which are not as risky as a transplant.
Then he said it: “We are not going to do a transplant on you. You will get better and you will probably never see me again”.
My oncologist will let him know if anything odd ever shows up again but for now, it seems like God did not mince words.
I had begged and pleaded God to speak directly to us. It seems that He gave a simple, direct answer “no transplant”.
We were silent.
Of course we were relieved but when you have something that has been terrifying and has drained every person in your family physically, spiritually, emotionally and financially–sudden relief is hard to process.
The doctor broke our silence with a smile as he addressed my sister and me, acknowledging the lists of questions on our laps, and the fact that we probably no longer needed those to be answered. Everyone in the room did the nervous laugh.
My husband and parents took me out to a celebratory supper after our appointment and I was still in shock.
Slowly, joy, relief and hope has crept in.
I am writing this on a sunny Saturday. I am starting to really get it, I don’t have to have a transplant and I am grateful.