The clinical trial I am part of is divided into four week sessions called cycles. Cycle one consisted of twice a week dosing with the drug: Tuesdays and Fridays. I hated driving to Scottsdale twice a week to be treated. I’m really not comfortable in the car for extended periods of time right now, though I often found napping a good way to spend the trip. Still, losing twice a week to long car rides and days running around the Mayo Clinic building wasn’t really the way I wanted my weeks to go. Especially when some of those days stated at seven in the morning and had me home around five in the evening. There were three PET scans, a CT scan, two echocardiograms and several doses of the drug. The worst part had to be the dexamethasone I was expected to take with the drug. At first, I didn’t seem to have any side effects from the dex (which is a steroid) or the drug…
And then week four happened.
Not only was I completely unable to get more than a few hours of sleep each nice (thanks dex!) but the joint pain they warned me about started. First in my hips, then in my hands. Last weekend, I found typing a challenge, not that it stopped me. I was really disappointed that the side effects started, even though it gave me some hope the drug was working.
Cycle two started this past Tuesday. I met with the nurse practitioner working with Dr. Borad and she reviewed the most recent of the PET scans. We are, once again, calling my cancer stable. I hate that word. No new growth since I started the trial, no shrinkage. Either way, there is still a lot of cancer in my body. If I wasn’t finding it difficult to eat certain foods (no more red meat or grease for me) and if the pain some days didn’t make me burst into tears, maybe I’d be happier with the word stable. Since I am in pain and I do feel sick so often, and very tired thanks to the lack of sleep, I am not content with stable. I want results.
I want, and pray for, a miracle.
The only good thing that really came out of Tuesday, besides the lack of growth and the now once a week treatment, is that we finally have a cause for my out of control heart rate and can do something about it. My heart rate, since the cancer, has steadily climbed. My pulse was once solidly in the seventies. When I was on the chemo treatments with Dr. Brooks, it would spike into the eighties. Since my lung biopsy, however, it never drops below ninety, which is really pretty high. We always assumed it was pain or my coughing fits, which are ever so pleasant and show no signs of stopping. On Tuesday, though, the echo tech was showing me my heart and pointed out that the tip of my port-a-cath is actually inside the right atrium, the upper right chamber of my heart. It wasn’t originally, nor should it be. It was supposed to be in the vena cava, which is the vein that leads back to the heart. Back in May, before my biopsy, there is a chest x-ray that shows it was in place. It isn’t anymore.
So now I have to meet with a vascular surgeon to see about having it pulled back slightly. The tip could be hitting my heart in a way that it causes the high heart rate. At least this should be an easy fix.
Now, if only we could get rid of the cancer.
Three more weeks and we should be deciding if we continue the trial or start a different round of chemotherapy. I’m nervous. I really want them to find something that works. I want my life back. I’m tired of being sick and weak all the time. I miss working and being part of things. Even when we do go out and spend time with friends, I can’t stay long because I get so drained. It’s not a very exciting way to live.
Nor is waiting to hear back from the disability people or the company that controls my COBRA. Everything is very much hanging in the balance right now. Is there any way to take a vacation from all of this?