OutsideTheCrayonBox

Been a while. It's been a rough ride, hence no updates. Last update was May 16th. I'll keep the catch up short. Chemo (5/18 - 5/22) was the hardest one on me yet. Took me a LOT longer to recover from it. I missed ANOTHER family reunion & ANOTHER of Hannah's recitals. I was in the hospital for 4 days with fevers. Lots of transfusions. When I finally started coming out of the fog, about a month and a half later, I developed shingles. For those of you who don't know what shingles are (I didn't), the chicken pox virus stays dormant in your body after you have them as a child. A compromised immune system + stress make the virus come out of retirement in the form of shingles. Now I'm sorry but this is a sick joke. You have a compromised immune system, you have stress so let's throw in some excruciating pain! Of course I don't do anything half way...mine turns into Post Herpetic Neuralgia. joy. The first week in July I started testing for MD Anderson. EKG, LIPID, Colonoscopy, Dentist, you name it, it was done. (passed all with flying colors btw). Still dealing with this PHN. Which brings us to August and Dr. Parmar (Houston) & Dr. Weeks (Memphis) decide I've been too long without chemo. 2 months. They want to make sure I stay in remission for the transplant. I fought it with everything in me (which ain't much these days). They won. On August 11 I started back on chemo. 4 straight days this time instead of 5. Week 1 went pretty well. Week 2 was 5 straight days of IV antibiotics. Tired but so far so good. Had to get 12 buttons of platelets yesterday and my counts went up to 111. Today they were 43 = ( I'll probably be getting platelets & blood on Monday, if not before. (Dr. Weeks' birthday is this Sunday, btw. 8/23)

Okay that brings us to the information I got today. I finally have a transplant date. This is what I know so far...
9/13 I leave for Houston.
9/14 - 9/18 I get all the tests I just had done, done all over again. bone marrow biopsy, PFT, echo, ekg, blood work. This is to make sure I'm good for the transplant. This will be done outpatient.
9/15 They harvest the cells from my donor. While we're here, let's touch on this. The National Marrow Donor Program is very strict about confidentiality. All I know is she is a 31 year old female. Not to mention an amazing person. After a year, if we both agree, we can be in contact.

Off subject, here's another little tidbit. They did HLM typing on my kids. It turns out Hannah is a partial match. She has the NK benefits so they have decided to use her blood as a booster. My transplant is NK Protocal. My donor and Hannah have the NK (Natural Killer) benefits in their cells. Their cells are natual killers against cancer cells.

9/23 Hannah arrives in Houston and they do an EKG & chest xray and give her a tour.
9/25 they give Hannah 1 of 3 Nupegen shots to boost her cells. She will get these 3 days in a row.
9/25 I'm admitted to the Hospital.
9/26 I start 4 days of intense chemo.
9/28 they collect Hannah's blood which takes 2 hours. This I don't understand and will be finding out.
9/30 I rest
10/1 Hannah's cells are given to me as a booster.
10/2 - 10/5 I rest.
10/6 I start 3 days of intense chemo.
10/9 They transplant my donors stem cells. This is also referred to as my new birthday but it's also goldie's REAL birthday!
10/10 They start watch for the cells to engraph. This normally takes between 14 & 30 days. The more I walk around the quicker it happens.
After engraphment I am discharged to a place close to the hospital and I'm tested every day for 7 days. Then each week after, it's less and less. Day 100 I'm released to go home.

That's all I know right now. That was a lot of information to find out today. I'm sure I'll come up with a million questions to ask before I ever leave.

I would like to take this opportunity to thank all my wonderful family & friends for their support, emails, cards, prayers and love. I have the best support system I could ever hope for. I especially want to thank my sisters. Beth for working so hard in finding us a place to stay while in Houston, for her encouragement and love and for giving of her time so freely while I'm in Houston to be with me as I need her. Susan for loving me and dropping everything to drive from Winter Park, FL to Memphis when I needed her. Jane for being exactly who I need her to be. I want to thank my kids for being there when I need them and for loving me. Mir for her tireless efforts in putting together a benefit art show for me and for being the bestest friend EVER! Last but most, Marty, my husband, my caregiver, my rock. Words cannot express.

Love you all!