Wednesday, February 19, 2020

Chemo, Cycle 2 and more

     I'm just a few days from the beginning of cycle 2 of my chemotherapy. I'll sum up the events of the last month, tell you how this cycle goes, and talk about the aftermath of the 2nd infusion cycle.  Our daughter, her husband and their child (our grandchild) will be visiting Marathon the week after Cycle 2.
   
I mentioned in the last post how the first few days after the chemo I had a hint of nausea that was easily controlled by prescribed medications. After about two days I stopped those meds and felt fine. Basically I felt really well for quite some time. I took it a little easy as instructed but felt maybe I didn't really need to. I didn't... but. Before we got to week 4 I started to feel a little more run down. I got tired easier, sooner. My blood pressure dropped enough that I stopped taking my blood pressure medication as I had to do just before my first chemo round. Still feel good but now I know I'm not quite 100%. I would guess that my first round of drugs is wearing off. One dose, of course, doesn't cure you. Otherwise one wouldn't need 6 cycles. Hopefully 6 cycles will be enough to keep me healthy well into the future. If we do maintenamce doses or move on to the next phase of treatments remains to be seen. My oncologists have different opinions/suggestions and treatments for my type of lymphoma are evolving rapidly so options 6 months from now will be very different from options a year or two or five into the future. At my age, talking about a future 20 to 25 years down the road is not unreasonable. At my age,  having lymphoma and talking about a future 20 to 25 years down the road is just as reasonable. What's to complain about?     

     After this point this blog is post cycle 2 infusion. 

      Day 3 of Cycle 2. Or first day after 2 days of chemo. As smoothly and relatively easy my first round of chemo went this round was the opposite. A lot went wrong. Nothing went smoothly and we had a dead rental car battery to deal with, too. What fun.

     It wasn't my intention but I may have made Cycle 1 and chemo in general sound like it was a breeze. Many people have very difficult experiences with chemotherapy but mine went fairly smoothly with only minor effects. My experience with Cycle 2 was not quite the gentle breeze as it was with Cycle 1. Closer to a gale, or at least a significant storm. But the bottom line is at this point I actually feel better on Day 3, Cycle 2 than I did on Day 3, Cycle 1. Go figure.

     We arrived to the Cancer Center early as we did not hit traffic. Got my blood drawn after a little wait and then sat around for a while. We were told my oncologist wanted to see me before the infusion but after the blood results were in. Then we found out  he was out sick and I would see the APRN instead. I went over to his office and got vitals checked and eventually saw blood results. We also requested a EKG to check for occasional irregular heartbeats. The old ticker has been irregularly irregular meaning sometimes there are little skips, sometimes it's all normal.

     Bloodwork showed a drop in White Blood Cells which was expected but neutrophills were good. Red Blood Cells and all the results associated with them improved which was hoped for. So, all-in-all, results were good. That was the end of the easy day.

     We got a new-to-us nurse (male) who failed at starting an IV, then I had a blow-out on his second attempt. He wisely went to get a more experienced and skilled nurse to start the IV. She failed the first time, too. I was a bit dehydrated due to the extended time since breakfast and liquids but they all said my veins looked great and they couldn't understand why they had problems. Once we started with the benedryll and other pre-chemo drugs I developed a sub-Q rash on my arm above the IV site. It faded fairly quickly. Then the Retuxin started. We started at a higher rate than last month and ramped up the flow rate quicker. This was because I tolerated the drug well last month. This was a mistake. I had a major reaction. My whole head and neck area was affected pretty badly. Itchy scalp, flushed and swollen face and my throat closed up. Not completely. That would have been bad. We stopped the infusion and got several antihistamines via the IV. The swelling went down after a little while and we resumed the infusion at a slower rate. The other big problem was my nurse was not quite as nuturing as my nurse last month and failed to get us lunch, snacks and drinks in sufficient quantities. They are not servants but patient comfort is actually important in this whole process.

     After the Retuximab infusion was finally complete, we started the Bendamustine portion of the chemo. This infusion is pretty quick. There is less drug and it goes in rapidly. We were done later than planned but after the reaction events I still felt good. Better than last month even. Might have been the steroids or the extra antihistamines but I felt fine. Then...

     We ordered food from the Italian restaurant we liked last month and went to pick it up for takeaway. The rental car would not start. Dead battery. Sigh. Hospital security gave us a jump but it took time. We were late to pick up our food. Late to hotel check in. And late to eat our dinner. Have you noticed the focus on food and other comforts. You might find that theme common to chemo or radiation patients. Not sure of the psychology here. I'm not analysing myself or other patients in other situations. Not today.

     Day 2 of this cycle was the same as the previous month, breakfast at the hotel, a short nap and some shopping on the way to the clinic. We went a little early to get an EKG done. They had tried during the infusion on Day 1 but two of the leads failed so we couldn't get an official reading. With the leads that were working we could see I was having PVCs (an irregular heartbeat) and a slightly faster rate than normal for me. No print out but Carol could read the screen. All this is a result of the chemo but no one seems to be concerned except Carol. And me.

     We had another delay on Day 2 as our rookie nurse failed to order the drug for infusion when we got there. Sigh. This meant another late start on the road back to Marathon. She also took two tries to start an IV line even though I was thoroughly hydrated this time. So ended the active portion of Cycle 2. As I mentioned, I felt even better on and after the second day of this cycle than the previous month and I felt very good after Cycle 1. It was everything else that made this a frustrating cycle. A friend whose husband went through all this last year warned us that every treatment for him was different every time and not to expect consistancy. Well, I can hope, can't I?

     Our daughter Heather and her family, including grandson Cobbe, arrived on Day 4 of this cycle. I was stll feeling great, still better than during Cycle 1 at the same point so activities were not curtailed at all for them or me. I didn't go to the beach with them because I'm not supposed to spend a lot of time in the sun and I didn't go to Key West with them because I do not want to spend time walking around and getting tired someplace I've been to a lot of times but the Dolphin Research Center and Crane Point Hammock are all places I did or will visit with them.

     Cobbe loves being on the boat (and being with grandma and grandpa - MeMa and Papa) and riding in the dinghy as well as swimming in the ocean, in a local hotel pool and seeing all our wildlife. He loved the dolphins at the Dolphin Center as well the exotic birds there. He is always pointing at the pelicans, gulls and buzzards (turkey vultures) flying all around the boat. Of course all the airplanes on approach to our airport grab his attention, too. He has seen sharks and other large fish nearby but he hasn't seen manatees or dolphins around our boat yet. That will likely happen before his week here is done. It's just part of our normal environment.

     So that's the summary of the start of Cycle 2. We plan to prepare the boat for our northbound passages, then Carol will have a work week away. We will scoot up to Fort Pierce, FL, drive back south to Miami for Cycle 3 and then push up to Annapolis, MD for the drive home for Cycle 4 in April. It's all very complicated, much more complicated than we prefer to have our life be but sometimes you just have to deal with what comes up.