POST #3 – Getting Meds and Sleeping

My 9/10 noon appointment at HMC infusion area started at 2:30pm, but, that was OK. Busy place, and fortunately I was feeling OK.  Had the opportunity to talk with other patients & families which was interesting and educational. The facility (Cancer Institute) opened in July 2009 so everything is brand new, which is also pleasant. Day One of meds on 9/10 was long..(ended at 7:50pm) but painless. When the chemo bag (cytoxan) was finally running into me.. I felt a bit fuzzy faced..then that subsided. Prior to cytoxan I was given zofran, an anti-nausea med which would hopefully counteract the effects of cytoxan –possibly to be felt later that evening. Yay. Also had a bag of my old friend, dexamethasone, a steroid which works well in this cocktail process. Only side effect there is getting a red face, and feeling a bit jumpy and warm over the next two days..not bad.

The nurses are wonderful at Hershey in the infusion area… knew exactly what I needed at every step, even though I obsessively asked/repeated to each one that entered my room.. stating what I had, what I was supposed to be getting, asked them what & why they were doing what they were doing…I’m sure I made their day.   (but I figure, hey, it’s my body and this stuff is dripping into me and folks are touching my catheter.. I want to know that everything is happening as it should to appease my own paranoia at every corner. No oopsin’ with this girl. Uh uh. ) But clearly, these are top notch nurses, but my pattern of questions will continue even if God himself was fingering my catheter. Sorry.

There was discussion among the nurses about the size of this the 2 tubes are longer / larger than what is typically used for a stem cell tansplant / apherisis process. I believe they stated this is a kidney transplant catheter as LVHN does kidney transplants & not stem cell transplants.. so, size sorta matters.  However, it works, but it’s just different.  My ears tuned in to everything, of course.

Thursday night was interesting. Settled in Hope Lodge & went to bed at 9pm. At about 11pm I started to have a weird all-body sensation: not nausea, but an annoying, uncomfortable all-over body “pressure” though my body was electrified and buzzing. Try sleeping with that feeling–a no go. It finally subsided at about 6am. Not much sleep.  Oy.

Friday during the day at the infusion area at HMC was a repeat performance of all the same i.v. meds received on Thursday. Another long day as well.. Noon until after 7pm. However Friday night was a new experience.. no “weird-buzzing-pressure” marathon, but instead, I had severe facial bone pain–from cheek bones to lower jaw–just an intense ache that lasted 5 hours. So.. again, little sleep. I did take 2 Tylenol, which is the preferred OTC med as others thin the blood which is not good in my case. The facial pain finally subsided around 6am.  A side effect of cytoxan. Another night of lost sleep so I was fairly zombied come Saturday morning. Needed my Z’s desperately.

I’ve had what can be described as background nausea that comes and goes–mostly evident by minimal appetite. When the “feel ok” curtain opens now & then, I do feel like eating and do so… as of course I have to keep nutrients in me and be balanced and healthy.  One cannot live by 10 billion bottles of water alone. (well, not quite 10 billion..but, feels like it sometimes..) and I even LIKE drinking water..but the condition multiple myeloma AND the treatment plan dictates steady water consumption..which is fine. MM can impact kidneys especially & other organs as it robs red blood cells from doing their job in keeping organs functioning..minor stuff like that.  So, being a good soldierette and OD’ing on H2O.

Next on my agenda is Tues. 9/15 when a visiting nurse begins to see me here daily at my mother’s home, and give me daily injections of 600 mcg of neupogen. Neupogen will stimulate the growth of stem cells..and will coax the stem cells from my bones into my blood stream for “collection” next week.  I am supposed to feel as though I have the flu from 9/15 to 9/20 with particular emphasis on the “bone & joint pain” part of the flu. So.. I may not be back on this blog until I feel up to it..or perhaps my sister can enter a post for me. We’ll see.   The filled syringes are waiting patiently in boxes next to the pickles and eggs in my mother’s refrigerator.

The stem cell “transplant” is a transfusion type process the following week back at HMC. Oh yea, stem cell collection is “big” (meaning: important). On average, 2 million cells are needed for an autologous transplant — (autologous means my own cells are extracted & later put back into me, versus accepting donor cells from a relative or non-blood related donor. ) My own cells are collected on 9/21.  May take one day, may take up to four days. It’s a wait and see.

Then a few weeks later, they’re infused back into me, following a mother-load of chemo of course.  It’s really all about the chemo..and the stem cell harvest & infusion is part of the chemo process.  I get that now, earlier, I didn’t quite get that. I thought stem cells were magic! Well, they are in a sense I suppose.  Once the stem cells are put back into me (after the chemo wipes out much of those bad little myeloma cells, along with alot of other stuff in Jody.. ) the freshly infused stem cells will start my immune system garden to grow once again.  I’ll be in isolation for 2 weeks at HMC to help ward off infection and such. More later on that.

No way to tell if I will give enough of my own cells for a transplant. Typically.. people are able to do so..SO, I passionately desire to be typical in this instance.  But..there are also people who simply cannot give enough cells. If I do not, I believe the transplant is a no-go.  If all goes as planned, I’m following a protocol for a tandem transplant–one now (Oct. 12) and another within 3 to 6 months.  According to studies and newer research, this may increase the percentage of being in remission and non-recurrance..or keeping recurrance at bay or farther away.. than with just one transplant.  Its a more aggressive approach and frankly with this–I’m all about AGGRESSIVE.  I’ve asked too that if I my cells really flow..and the collection is wildly successful and cells-runneth-over.. to collect enough for 4 or 5 who knows what lies down the road.   They’re kept frozen can be used later. Anyway..cell collection is next week..starting Sept.21.

Almost every day I thank God people with the intelligence, education, skill and ability perfected this process..the needed technology.. (the equipment), the research behind the medications, the whole freakin’ shootin’ match to make this treatment possible.   I mean, if this was back in the day of our grandparents (..or maybe not that far back)  it’d be the family story…“Yep, grandma passed young. Felt sorta poorly, got kinda thin, passed away.”  A mystery.

So, the next several days are my neupogen injections & I’m readying for being achy. But right now, I’m feeling hungry and will satisfy that shortly.  A step at a time. Depending how the next few days go..may post on this blog or not. We’ll see how I feel.