1. There are no dead ends.
*Will transplant work?
2. This too shall pass.
*Dealing with all the side effects from the high dosage Chemotherapy
3. Everyone has choices.
4. Cancer is fascinating.
*Who developed all these crazy drugs and kudos to all that commit their life to this war on cancer.
5. My urine smell like a wet dog
*The BCMU chemo drug.
6. The closest I’ve been to drunk in 7 months was today?
*The BCMU is based in alcohol. It made me feel like I was still drunk from the night before but x 56. Major stinging in the face like you dove into a lake and all the water went up the nose and down the back of your throat.
7. Benadryl is a cure all.
8. Mask wearing is crappy, sweaty, and completely necessary.
*Dealing with my new normal.
9. House hunters passes hours upon hours in the hospital.
10. Humility in people is inspiring.
*My hematologist stopped by. He is genuine and genius.
This last week (7/9-7/13) was intense. In order for transplant to proceed I had to prove that I was healthy enough to handle transplant and more importantly that my cancer was chemo sensitive. My last PET Scan in June showed that cancer grew, which indicated that cancer was refractory against the R-CHOP. Basically it was no longer responding to that cocktail of drugs and started to grow again. So, I had two more rounds of a different cocktail (RICE chemotherapy) to see if cancer would respond. Transplant would not be possible if cancer is not respondent to chemotherapy. Therefore, heading into these scans is pretty stressful and intense knowing whatever shows up on is the determining factor. We live scan to scan like so many other cancer patients and families.
But before and after the PET Scan (Wednesday 7/11) there were many other tests. The most invasive one being the bone marrow biopsy. I had one back in January when I was all doped up on pain meds in the hospital. I decided it wouldn’t be that bad if I did it the same way with local numbing. Also I didn’t want to go under sedation because it would take longer for me to recover, and I had other tests scheduled right after that were dependent on lung function.
Sarah and I went bouncing into the room where David (the same gentleman who did my biopsy in the hospital) was preparing. Sarah sat to the left of the bed so I could look at her shining face while they penetrated my pelvis bone. First the left and then the right for a total of 4 times: Two needles to extract fluid and two more to scrape the bone. Left didn’t hurt so much, but then came the more painful right side (more muscle to hallow out before the bone). I actually paled in the face- per Sarah. I think next time I will try sedation. Needless to say, I will remember this biopsy and soreness still follows me.
The purpose of the biopsy is to check to see if cancer spread and if my marrow is clean. Since they will be using my own marrow for the transplant it must be free of cancer. Results for all my tests had to wait till Thursday. It takes a great deal of ‘I don’t know what’ to not let the mind wonder. Unknowns are the hardest. That is why distractions are the best. But this week was the last week I wanted to have the distraction of insurance issues.
Serious unnecessary stress. Patty spent the better part of the week trying to prove that I had continuous coverage because I was about to have no insurance and no transplant. Not going to bore with details, but I can assure you that we are more knowledgeable and ‘on top’ of our game than most of the folks at the insurance companies. What happened to education in the workplace? I think a better part of luck played into this because MANY loop holes exist in favor of insurance companies and I narrowly missed them. I am insured.
Okay results time. The biopsy came back clean! Cancer did not spread there. I am psychologically capable of handling transplant (one of the longest tests…). CT Scan showed no abnormalities (yeah! no loss of organs…darn appendicitis). Pulmonary functions test (ugh breathing exercises) showed compromised volume levels (Dr said it was likely due to the mass putting pressure/ invading my lungs). Echo showed some strain of the heart (likely due to 8 rounds of chemo). Labs and other tests good to go. Most importantly PET Scan showed decrease in mediastinal (chest) mass and nodes in the lungs did not appear. Therefore, cancer is responsive to chemotherapy! Yes, we would have like to see all cancer gone, but after consulting with many colleagues my Dr decided that transplant is a go (thank goodness!!) and radiation with be moved up.
Now we wait for approval from insurance.