Let Me Catch You Up
It's been a long time since I blogged. It has been seven months of ups and downs, encouraging news and then dashing news. I did manage to take some pictures of my hair growth, but I will post that in a different blog post.
For now, let's get caught up. In January 2022 I was told "it's classic lymphoma, that's the easiest to get rid of. You'll be done by the end of summer." So I followed the plan. I did the chemo. I followed up in July with a PET Scan. And nope... not gone. Vastly reduced, but not gone. So another biopsy was scheduled. The needle biopsy again showed nothing conclusive (I will never do that again) so I was referred to have a surgical biopsy done. This one showed there was enough to not delay in more treatments. But what treatment to do? This became something my local, Santa Cruz, oncology couldn't do.
So in September I was referred to both Stanford University and University of San Francisco (UCSF). Both teams looked at my PET Scans, biopsies, blood work and all the stuff. Both agreed that I needed more treatments. Stanford said I'd be put on a waiting for at least a year, but UCSF said they could get me in sooner. So to UCSF I went.
They had hopes that a new trial treatment would be good and we got my insurance to approve it, train the Santa Cruz oncology nurses and let me do the treatments here. First round was fine. Less side effects than before and I was hopeful again. I was working full time, visiting with my students and families, going to church, etc. Things were looking good.
Then the second dose was administered in December. This was not good. I had a reaction that caused my heart to race, by blood pressure to actually go high (I'm almost always too low) and a rash to form all over my left neck and chest. It was scary! The UCSF doctors decided that I should not continue with that treatment and talks turned to autologous stem cell transplant. I began more tests to determine I was eligible and then we waited on the insurance. For a real medical explanation of autologous stem cell transplants you can read this Mayo Clinic article. But I will do a different post giving my non-medical explanation later.
Finally, in February I was approved by the insurance and ready to schedule the transplant. I arranged to take two months off of work and started the process of giving myself the shots to increase my stem cells. That was a hard week because I didn't have work to distract me, I was in bone pain from the shots and I was scared because I was having yet another surgery. But I made it through and Rick and I even got to have a few hours of time alone in my favorite city. We walked the beach, saw my Golden Gate Bridge, drove through Golden Gate Park, and generally explored in between appointments.
Wednesday I had a catheter placed in my neck for the stem cell harvesting the next day. I was scared, but also ready to just get it all over with. I was awake during the surgery, and even watched part of it on the ultrasound monitor.
Thursday was smooth. I went to the clinic at 7:45 am. By 8 I was in a bed with warm blankets chatting it up with the most kind, gentle spoken nurse. Her name was Jackie. She was great. She took my vitals, answered questions and explained everything as she went along. The weird part is she literally stays with the patient the whole time. She did take a short break, but had her supervisor sitting with us. It was odd having a person just sitting there. My pastor's kid, performance self took over and just started talking to her about her kids and her life and probably oversharing mine. But she was great.
By 2 the harvesting was completed. Jackie patched me up and sent me out to get lunch while they checked to see if they got enough stem cells. Again, Rick and I went out and got some food but then drove around some of the residential parts of the City and had a lovely time together.
When we returned to the clinic around 4 we were greeted with a cheering Jackie. I needed 2000 stem cells for the transplant to work, but I had harvested 3800. We were good to go. I could get the catheter removed, go home and wait for the next steps. Jackie got me all comfy again with warm blankets and started to clean up the tape surrounding the catheter. Out it was coming! The hardest part was actually the tape being removed. My skin seems to really like to hold on to that stuff. But she got that all off, removed the one stitch holding it in place and we were ready to pull out the "tube". She had me hum and she pulled and slip-slurp the tube was out. She was holding the gauze on the now open wound to stop the bleeding.
That's when things went bad again. As she was standing there holding the wound someone from the lab that freezes, stores and basically takes care of the stem cells until I need them comes in and says there is something wrong with the freezer. They are not sure how many stem cells might have been lost in the process. WHAT?!?!?! If they lose too many cells I will have to do this process all over again. Had they come and told us not 20 minutes ago we wold have left the catheter and come back the next day to harvest again. But no. The tube is out. The only way to put it back is to schedule another surgery. She apologized and asked us to just hang out while they discuss it.
They came back 15 minutes later to say that they "think, maybe, there is a chance" that they still have enough cells. They won't know, however, until Tuesday. TUESDAY! I have to wait 5 days to find out if my hospitalization to do the transplant is going forward or if we are delayed two more weeks (or more) so they can do another harvesting.
That's where I am today. It is Saturday the 18th. I am supposed to go into the hospital to start the mass chemo and then transplant on Thursday the 23rd. But right now I don't know if that is happening. I am sure there are people with much bigger problems. And I know that delaying the process by two weeks and thus delaying my return to work is really not THAT big of a deal. But I am also questioning how a big institution like UCSF doesn't have a backup freezer or contingency plan. I am also wondering how my insurance is going to deal with this screw up.
I'll keep you posted. Meanwhile, here is a picture from a good part of this week:
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