Thursday, November 8, 2012

PETScan Results: Not Bad, Not Good Either...

So... Kind of a disappointing visit to the cancer center yesterday.  I read my scan results and there is small growth (as in, biggest "target lesion" growth was 3 millimeters, not big at all) in 3 target areas, steady in one, and reduction in one (2 millimeters).  The most worrisome part is my thymus gland- it's grown quite a bit, however, I've had a biopsy done there and quite possibly have some scar tissue and/or reaction in the thymus and is swollen/growing and NOT cancerous.  It's also not bright at all in the SUV brightness of PETscans, and none of the target lesions are bright enough SUV ("yet," always implied, but never said) to predict a rebound of cancer.  Hmm...  So far you've hear the Not Good part of the appointment.  

The Not Bad:  Doctors were very positive and said they see this kind of thing all the time, and are going to cut back quite a bit on the immunosuppressants to let Zach's immune system really kick in and get some Graft vs. Tumor effect to shrink these babies once and for all!  Since I've not had any Graft vs Host Disease (GVHD) during the first 100 days, they say I could very likely get some now that we're cutting back.  It's also not supposed to be a good sign that I have NOT had GVHD yet.  From what I've read, a LITTLE GVHD during the first 100 days is a great sign that the transplant will attack any cancerous cells that might be left over.  

Next scan is in 4 weeks- I'll be in SLC getting that scan done and getting to know all of my new doctor team there.  I'll miss everyone at JTCC- they've been wonderful, and I'd recommend them to anyone with Hodgkin's!  I need to get baking though for my last appointment on Monday- I promised them all some of my famous "Best Sugar Cookies Ever" in little heart shapes with pink frosting :)  

Monday I have CTscans (mostly for the study I'm in), a regular/last checkup to have blood drawn and checked, get copies of scans and my medical record, references of docs in SLC, results from my bone marrow biopsy I had yesterday (not bad by the way), and to get another transfusion of blood.  LONG DAY!  And you might be thinking... but in the last post Tessa said she has become a MAN and doesn't need blood transfusions anymore because she's making her own hemoglobin??  And you'd be right!!  I did say that and apparently I'm mostly right (why can't things just be black or white?  What is this grey crap?? :)  My hemoglobin was only 7.7, which was a little disappointing but still shows some improvement- that I'm not dropping into the 6 range and seeing floating dots or hearing the rushing of my heart pumping blood to my brain faster than usual and/or passing out!  I actually made it up all 3 flights of stairs at the cancer center without having to stop to rest- that's always been my own personal test of what my hemoglobin will be before we get results back- Adam thinks I'm crazy.  

Wednesday, November 7, 2012

Day 100, Post Bone Marrow Transplant

I know, it's been a long time, sorry!!  I've had an incredibly draining and tiring 100 days post transplant period (day 100 was Nov. 1st and is considered a major milestone in BMTs).  I've felt more tired than usual, taking often more than 30 pills a day, most of them prescription and most of them with heavy duty side effects.  I've only recently begun weaning off of them, and up until 2 weeks ago my hemoglobin levels hovered around 6-7, when more like 12-18 is "normal" range for a woman my size and age.  I was getting blood infusions every week and finally had a turn around two weeks ago!!

I am now making my own hemoglobin, which MEANS- that I AM A MAN!!!! :)  Ok, not really a MAN, but I do have XY chromosomes in my blood, instead of XX for a female.  Thanks Zach!!  Now we are going to be the closest siblings ever!  :)  The fact that I can produce my own hemoglobin does mean my blood type has changed, from O+ to Zach's, A something (do people really remember the + or -?)  The most important thing my own hemoglobin means:  I have energy!!!!  It may not be at awesome levels yet, but it's coming!  

The last two weeks have been so much better for how I feel every day, and a good thing too- because a lot has happened recently!!  Adam has accepted a position in our home state of UTAH and we're moving across country in 1 1/2 weeks!!  Soon after accepting that and coming to terms with a horrible time of year to be packing and moving...  We had to deal with Hurricane Sandy and no power or heat for a week!!  So after a few long days of camping out in our house and crazy riotous lines for gas, we went to Boston over the weekend to stay in a hotel with heat and a gas station nearby- NO lines :)  

While IN a Boston graveyard on a tour these nice people recognized me and my family from the Mormon video!  Even knew my name!  How surprising it was to hear my name said from behind me and to look around and not know the people who said it :)  They were so nice, and are the reason I've decided to start blogging again.  

Now we're back, celebrated Halloween late, and are off to a slow packing/shedding start before the big cross country drive over Thanksgiving week.  Today I have an appointment for a bone marrow biopsy and results from my first PETScan since remission, at 2pm- it's 10am and I'm feeling nervous as I've ever felt- my stomach is rumbly and I feel sick.  I may be able to be mentally be stoic but my body sure can't control itself!!  I'll post as soon as possible after my appointment to share the news!