When I last left you, I was back home from an over 2 week hospitalization in December and a diagnosis of Stage 3-4 Hodgkin's Lymphoma. A lot has happened since then. I’ve wanted to write an update, but multiple appointments, surprises, bad news, side effects, and the inability to spend any time at the computer have prevented that. Sorry about that. I’ll start writing it in stages as that might be the best way to get this done.
At my first outpatient appointment for Chemo Treatment #2, I was told I needed a follow-up Echocardiogram — basically an ultrasound examination of my heart. My oncologist said that since one of the 4 chemo drugs I was taking was toxic to the heart, the iffy results of the one done when I was hospitalized needed to be clarified. OK - I added another appointment to the list of the ones I needed to be transported to by my cousin or sister and got it done.
2 weeks later, at the appointment for Chemo #3, my oncologist informed me that the follow-up echo showed a problem and that she was holding the cardio toxic chemo agent until I got clearance for it by a Cardio-oncologist. OK, add another appointment to this list. This time it was at a large, very busy hospital complex known for specializing in cardiac problems. I had to check to ensure that they were “in-network” for my insurance (a Medicare Advantage program). Thankfully, they were.
More bad news at Chemo #3 was my development of a reaction to the iron sucrose injection (to help build red blood cells. I suggested that I try adding an over the counter iron supplement to replace it. Approved and done.
The bad news surprises just keep on coming.
In the mean time, I noted swelling in my right hand and arm that was rapidly developing. This was worrisome since this was the arm I had my PICC lines (ports available to draw blood and insert IV or chemo infusions). I contacted my oncologists office and was told to come in immediately. Once there, I was sent for an ultrasound examination of my right arm where a blood clot was diagnosed. I got put on Xarelto, a blood thinner to dissolve the clot and prevent any new ones. Naturally, I had a hard time getting that prescription filled since it needed a waiver from my insurance, but the oncologists office obtained the needed approval in short order.
OK, now 2 more meds, iron pills and Xarelto to add to this list of Folic Acid 1 mg (to build red blood cells) and Pantoperizole (trade name Protonix — something to do with blocking nausea and vomiting due to chemo). Done.
Shortly after, I had the examination by Cardio-Oncology and was told that the pumping action of my heart was much lower than it should be. They ordered a Stress Test to make sure I didn’t have blockages in my arteries. Another appointment for follow up after the test was scheduled. I had heard horror stories about the chemically induced Stress Tests and wanted to try the exercise version despite the fact that I have been using a walker to get around due to persistent weakness from blood counts about a third of what they should be due to chemo and generalized debilitation. OK, it was ordered that way, but I was informed that if I couldn’t manage the exercise version, I had to undergo the chemical version.
I summoned up my utmost determination when I had the Stress Test and with some helpful rump pushing by a kindly nurse for the last 10 seconds and a full set of hand rails, completed the exercise version successfully. It was, thankfully, normal.
Cardiology started me on an ACE inhibitor and Beta Blocker, but my blood pressure kept crashing. It’s low to normal to begin with, but the drugs kept everything on the very, very low side. Despite having me switch doses to bedtime and then having me hold one drug, the problems persisted. I was barely walking and couldn’t stand without support because of continual lightheadedness. Eventually, I stopped both of them and started feeling more like myself.
My chemo appointments are now lasting 8-9 hours since they’re diluting one of the 4 drugs in an IV bag and infusing it slowly since it’s the one that’s toxic to the heart. I had another echocardiogram today to recheck my ejection fraction. I’m hoping it’s improved.
Currently on the computer for the first time in over a week. I hope to finish this.
The follow up echocardiogram showed the ejection fraction at 33%. Cardiology considers it “stable”, but want to get me on a beta blocker. They’ve prescribed Metoprolol ER one half tablet at bedtime. My blood pressure has lowered, but hasn’t crashed. It’s making me extremely tired, though, and I end up sleeping through the entire day and night. I hope that’s just transitory and will go away.
I also had a follow up CT scan of my chest, abdomen, and pelvis, which shoed “significant improvement” in the Hodgkin's lesions. Good news.
Anyway, I now have proof that as bad as I feel, Hodgkin’s is on the way out, I have at least 4 months of chemo every 2 weeks. If my heart continues to be stable, I’ll complete the treatments and kick its ass.
Sorry if this has been disjointed. It was written a bit at a time days apart. I know all of you will understand.
I’ll write something separate about the beautiful quilt that Sara, Ann, and all you lovely Kossacks sent. I want to include pictures from my next chemo appointment.