Tuesday, June 11, 2013

It was a LOONGGG Day

I am all settled here in my room back at the Massey Cancer Center.  I am on the same floor but I have a different room.  I had a familiar nurse as I checked in and a "Welcome Back Rachel" sign on the dry-erase board.  I also had another card waiting for me with lots of cheerful wishes from VDOT co-workers. Thanks!  It was a wonderful 2 weeks back in Blacksburg.  Sunday I was able to go to church on a beautiful sunny day.  There was lots to be thankful for even though the thought of leaving the family again (not to mention the chemo) had me pretty close to the Emotional Twinkie stage most of the weekend.  After church we drove down to Hampton Roads to say hi to family and be closer to Richmond.

So Brant and I headed out at 6:30am from Chesapeake this morning after a nice 1-1/2 day visit with family and friends.  Yesterday at my mom's suggestion Brant drove me and the kids down to the oceanfront to see the water.  Despite the nasty weather, it was between storms and we got to enjoy some fresh steamed shrimp on an outdoor patio. I put my feet in the water and felt the wonderful ocean on my toes. It was good water therapy to get ready for some chemo!!

Today was a whirlwind of meetings with transplant team members and admitting procedures (questions....information...breathe deeply...more questions...vitals...labs...breathe again...more questions.... information overload!!!).  At one point I thought they would do the "take a number" system on my door because of all the different people that needed to get in and meet with me.  Then the meds started and finally my first bag of chemo was hung at 3:15.  I will do six treatments that each transfuse over a 3 hr period.  I do 2 treatments 12 hours apart, then a day off, and repeat.  I know...kinda confusing but they gave me a chart to follow.  Basically I should be done and discharged by Monday morning, but will stay in the Richmond area for 2-3 weeks to recover and go to outpatient clinic.  I can expect mostly same side effects.  My counts will drop again, but hopefully not as low.  And this time I will get a drug called Neulasta to help my white cells recover faster.

The transplant meetings were very interesting.  Brant was here with me for them and mom brought the kids up later so Brant could head on back to Blacksburg.  I learned a lot of little things about the process that I did not know.  Like for instance in the transplant I will be getting my brother's stem cells that will graft into my bone marrow and become my new factory for making blood cells ....but I will also get his immune system in the form of tons and tons of T-cells.  These are the ones that attack and kill foreign bodies.  The doctors will try to let his T-cells attack any trace leukemia that my T-cells are unable to recognize (because cancer is so sneaky).  But they don't want his T-cells to go crazy and attack my other organs and cause severe damage.  This is called Graft vs Host Disease (GVHD) and is probably the biggest side effect they have to try to manage post-transplant.  Good news is that my brother is a perfect match for the major HLA sites and that greatly reduces the risk of GVHD.  The other good news is that we are different genetically (you would get this if you saw us...lol) so there is a good opportunity for his immune system to recognize my cancer, i.e, they would not want to transplant me from an identical twin if I had one.

I also learned that because of my more "challenging" leukemia (sounds better than poor prognosis, huh?), the immune response from George's T-cells is as or more important than the chemo they give me to wipe out the disease.  I had thought that the nasty chemo prep they give me prior to transplant was solely to get rid of the leukemia, but it is also being done to knock out my immune system for several weeks to let George's stem cells come in and get comfy (graft) into my bones with no interference from me.  It will also allow his immune system come in and take over...but not too much!  They know that the chemo alone is unlikely to find and kill all of those sneaky mutating cells.  The transplant immune response should take care of the rest of it, but if not, they have some clever ways to give me "booster" cells from George to sort of ramp up the attack should any bad cells reappear.

So maybe this was more info than you wanted/needed, but hey - you got a mouse and power button!  The long and short is that even though I may have a little more challenging version of AML,  I have lots of stuff going for me - perfect sibling match, leukemia that has shown a good response to chemo, "in remission" status, healthy & active, no recent infections, etc etc.  So the docs are all very upbeat and positive and I am right there too (at least today.....).  We are tentatively looking to start the process in mid to late July and hope to be well on the way to recovery ("normal"???) by Christmas.

Thanks for keeping all those prayers and support going!!!

5 comments:

George said...

Stop, thief! Not only are you taking my stem cells, you want my immune system as well? Crikey's what does a brother have to do these days?!

Hang in there kiddo, my blood products are coming. I hope they do the job for us. :-)

George said...

P.S. Thanks for all the answers in your email as well. I had already cut back from 0-2 drinks a night to 0-1 drinks a week. I figured a poison like alcohol was counter-indicated in this situation.

Love you, George A.

Rachel said...

George - just think how you will have the ultimate "card" you can play on me after donating....of course, good luck getting them back if I make you mad...lol!

I wrote this late last night and made a few minor clarifications to the medical stuff this morning. Nothing major..

George said...

Well, the best line from this has been "I always said my little sister was pain in the backside..." Everybody laughs at that one :-)

P-town soccer mom said...

I appreciate the detailed account. As a newbie to the cancer world, I am interested in the different cancers, drugs, treatments, etc.

I get a Neulasta shot 24 hours after each chemo treatment. I did experience bone pain, mostly in my hips, which made sleeping difficult. My chemo team recommended one Claritin a day for 3 - 4 days starting the night before the shot or the morning of the shot. They don't know why it works but say that it appears to alleviate the bone pain for roughly half the patients. The Claritin worked for me. The Neulasta shot has definitely helped the white cell counts allowing me to stay on schedule with treatments.