Brave New World

The tomorrow we both wanted and dreaded has come and gone and a new tomorrow is here. Oh Brave New World! The three days of RICE infusion were uneventful… unless you count the goofiness of our sons while Rich was zonked out on the pre-chemo meds Benedryl, Decadron and Ativan. After a full week in the hospital, it’s good to be home.

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Once we moved from the 4th floor Cardiac ward to the Leukemia and Lymphoma ward on the 7th floor at North Shore, we were able to see a bit of what life will be like during the stem cell transplant hospitalization. On our walks around the ward, we passed the rooms where the transplant patients stay… an outer room for scrubbing, sanitizing and putting on masks and gowns leads into the private room of those isolated patients working hard to build up their immune systems. Within the next month, we’ll have our orientation to find out more of

the details of Rich’s stay and put together all the pieces of the puzzle we’ve seen so far.

The nights on the 7th floor are quiet but also busier than on the 4th. Everything is constantly measured and quantified. E.v.e.r.y.t.h.i.n.g. Intake, output…. nothing is sacred. We were woken three times each night for a vitals check. Thankfully we were both able to fall back to sleep quickly. It’s understandable…. You’re on a 24 hour drip of meds that can do some serious damage and these nurses are there to minimize it as much as possible while allowing it to do the job at hand. They are angels who do everything they can to keep their patients comfortable and do it with a smile.

Our team has decided that since Rich’s recent PET scan showed no signs of cancer, he will have just two cycles of RICE before we begin harvesting cells. When we say the team decided, it’s more like our oncologist finally agreed when he saw the excellent results of the PET scan. He told us he had been driving everyone nuts insisting on three cycles of RICE. Shortly after, we met our stem cell doctor in the hallway. She said “He’s insistent on three cycles, we’ll have to go with three cycles.” No, no, no… he just said that he’s agreed with two. “Oh for heaven’s sake, he drives me nuts!” Yeah, he agreed with that too!

Cycle one infusions are complete and the watch begins… blood testing will be done basically every couple of days to monitor the ever important counts. They’re expected to fall and then begin their climb back up. Once they reach the proper levels, we begin cycle two. We know that the blood counts will go down and that we’ll need to be vigilant for bacterial, fungal and viral infections. Oddly, cancer.org has a pdf that advises that the patient, at the time when counts are off, to avoid wrestling, boxing and playing football. Duly noted. Thanks.

We keep looking for information on what to expect as far as side effects for this new regimen. One popped up immediately…We looked up some information on the hiccups that have come back with a vengeance despite the four times daily use of Thorazine. Randomly throughout the day and night, Rich has been barking like a seal. It’s easy to see that, while the sound is amusing, sometimes the muscle contraction that goes along with it is not.

A number of the medications given to forestall nausea prior to and during the infusion of chemo do indeed cause these hiccups for a few days following the end of the infusions and, if stopped, will allow the nausea to take hold. Some of the new meds in our chemo regimen also cause hiccups for a few days following the last dose. Research turned up a consensus that the hiccups are actually an alternative to nausea and vomiting… if you get the hiccups, you don’t get the nausea. Ok, that’s a fair tradeoff and we’ll take it. We’ll see how long they last.

A new side effect that started just today is a muscle tenderness… a different pain where it’s tender to the touch. We’ve not had that in our journeys to date. We’re trying the various pain meds to find the magic key. At this point in time, although we know our acupuncturist uses new sterile needles from a sealed pack, we’re still wary of any opportunity for infection. So our secret weapon is not available to us. Some feel that it’s another temporary effect that will fade after a few days. Fingers crossed!

OK, so it’s really NUMB fingers crossed. The peripheral neuropathy that started with the tingles in the fingers and toes is now full on numbness and pins & needles to the wrists and ankles. Part of the spread has been because of the lack of the B6 and B12 supplements during Rich’s hospitalization. Vitamins interfere with chemo so even multivitamins are stopped two days prior through two days after any chemo infusions. We’ve had some good experience with neuropathy subsiding as he starts the regimen again so we expect that will be true again.

Tomorrow we have another appointment with our team. Blood work will be done prior to our meeting so it will be interesting to see which way they’ve gone. We’ve been told to expect to need transfusions as the counts drop between this past cycle and the next. This is just one more indication that the beneficial poisons are doing their job. So far, we’ve been pleased with the results so no reason to complain now. Besides, with all those years of depositing gallons and gallons in to the blood banks, it’s time for a withdrawal!

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