Wednesday, May 14, 2014

Vidaza Days in Richmond

We are on Day 3 of my 8th round of Vidaza.  This is my first "maintenance" dose so we are only here for 5 days and I hope to be home by Friday afternoon! The knockout roses around the Coliseum are in bloom for our afternoon walks.  I just love to look at them.

My WBC count has been rising and today I was up to 2.2.  My platelets have been a little more sluggish and only got up to 68.  They were down to 56 today.  I would like to see them up above 100 again - that was nice.  My HgB (the red blood cells) have been 8.0 every day here in clinic.  That is what they transfuse me at, but I have pushed it off each day waiting for them to drop below 8.0.  It was really cool to see my blood type as B Pos on the lab sheet for my type and cross.  I guess I didn't fully believe I had switched to George, but looks like it has stuck.

I saw the Dr. today and discussed my biopsy results, which of course wasn't much.  The pathology summary statement was something like: the lack of bone marrow aspirate for.....special studies precludes additional evaluation, and it cannot be determined if the immature focus (cells I think) represent delayed bone marrow regeneration or residual acute leukemia.  There were a lot more words than that, but I didn't understand them...lol.  So I have to take away the good things from the report: they didn't find any obvious signs of leukemia and my chimerisms (% me vs % donor) are all 100% donor for what they could test. 

They are going to probably do my next biopsy with Interventional Radiology.  The doctor feels very confident I have aspirate somewhere....I couldn't be producing the blood counts that I have and I couldn't have switched to George's blood type if I didn't have it.  He just thinks either my bone structure, or too much chemo and too many biopsies have "relocated" it. So they will use a Cat Scan ( I think ) while they do the next biopsy to look for the aspirate and guide the needle.  I really don't care if they just put me out and find the stuff.  He didn't seem in too much of a rush to do one.  Great..... more waiting for info.  But the medical team seems happy with where I am at right now and they want to focus on getting my counts up and looking out for GVH.....not poking me for bone marrow.  The photopheresis is also on hold for now.  We will see where my counts are at the end of the week and I may come back next week or they may hold until my next cycle of Vidaza. 

My prednisone was reduced last week to 40mg per day and I have definitely started to feel it.  I am more like Supergirl now than Superwoman.  I have more days with less energy - especially after days when I have done more activity.  Yesterday was a high energy day and I used the elliptical for 10 mins here at the Hospitality House.  That was a new set of muscles since I have been doing the recumbant bike when I exercise at home.  I woke up today very tired and sore, then realized I was fever-achy.  I spiked up to 100.4 before taking Tylenol.  They did cultures and viral testing in clinic today, so I will know tomorrow or Friday if I have caught a bug.  But I really don't feel like it.  I was just tired today.  My fever never came back up and I hope it doesn't reappear tomorrow morning.  It seems like whenever I overexert myself and get sore, I get a temperature and achiness.  Not sure if that is what is going on.

I gotta mention what an awesome Mother's Day I had.  It was such a blessing that they pushed off my Vidaza a few days so I was at home instead of in Richmond.  The kids got up early and made me muffins...without any assistance or fires.  They brought me breakfast in bed.  You know you have "cancer kids" when they bring you your morning meds with breaksfast so you don't have to get up.  We went to the early service of church which wasn't too crowded and then Brant and the kids planted my summer flowers since I'm not supposed to dig in the dirt. I also got some new clothes in my "smaller" size for the summer. There were a few quiet hours at home alone in the evening to round out a perfect day.  Thanks so much Brant and kids!

Well, I better get ready for bed.  Only two more sleeps as they would say in Australia and then I can go home!

3 comments:

Anonymous said...

Your children have the best mom. I'm glad you had an awesome Mother's Day!

kandi said...

Thanks for the update. I can actually understand some of the info now !!! You continue to amaze me with your strength and positive attitude....which is so important. Big kiss to all your family for their support , understanding and love. love ya too, kandi

Unknown said...

I'm pleased you are getting through this challenge a day at a time...
Father, strengthen and encourage Rachel to stay focused and upbeat, surround her w Your Spirit. In Jesus' name! Amen Jim Wright