Monday, November 17, 2008

Transplant Time

There have been big changes since the last time I posted, and to be honest it took me a while to wrap my mind around everything. Something I needed to do for me, before I was able to blog about what has been going on.

I was discharged last Monday even though my counts were non-existent with the plan to give me some time at home before coming back in for the transplant a date for which would be narrowed down after the results from Monday morning's bone marrow biopsy. Obviously the hope was that my marrow would come back clean and we would have plenty of time to get ready for the transplant. We were also still waiting on the results from my Mom getting tested to see if she was a match, to determine if we were going to go with a Haplo transplant or continue forward with the Cord blood. The doctors wanted to make sure that every possible option out there for me was covered and thought about.

The early discharge came with very specific instructions... because I am still incredibly neutropenic I was required to wear a mask in public places. In reality my world consisted of the clinic and my house, but I wasn't complaining, I was HOME! It was also required that we continue the neupogen shots at home, Mike was a little too excited about being able to give me a shot. I shouldn't have been surprised but he did it better than some of the nurses had, I didn't get a bruise or a bump on my stomach. I was VERY impressed.


You call this "Home Health Care?"


"This might sting a little!"

Tuesday we went to the clinic first thing in the morning, labs needed to be drawn and I knew for sure that I would be getting a blood transfusion. I ended up also needing platelets so it was a long day at the clinic. That afternoon my left thigh and hip started hurting, bone and muscle pain, I took some presecription pills but to no effect. It continued to get worse, especially after that night's neupogen shot. We ended up at the ER around midnight that night as the pain was so excruciating I couldn't move.We were in and out of there relatively quickly but it took 12mg of Dilautid before the pain was gone. I should mention that 12mg of dilaudid in an hour time span would practically kill someone twice my size. For me, I was walking, talking, but the pain came back in 6 hours. SO frustrating.

All these drugs and I was still in pain

Wednesday and Thursday were more of the same, taking blood draws, getting platelets and fluids and whatever else I needed. My leg was still in excruciating pain but we still had no idea as to what was causing it. We know that the neupogen shots cause bone pain so I was taken off of those, but there is always the fear that it's the Leukemia coming back stronger than ever that's causing everything.

It was around 7 o'clock Thursday night when Dr. Costa called. As soon as he identified himself I freaked out, I knew it meant that something else had gone wrong, and I was right. My biopsy results were in and the chemo hadn't worked, there was still a strong presence of blast cells in my blood. They also got some disturbing results and my liver enzymes were off so he took me off all of the meds that could cause a reaction with the liver. On top of that another test proved that the leukemia had mutated again and was now resistant to the Tasigna. At this point there was nothing left to do but literally go straight to transplant as soon as possible. The information he had at that point was I would come to clinic on Friday and do in one day the prep items for transplant that normally takes a week or more to accomplish. I would then be admitted on Saturday for 3 days of chemo and 4 days of Total Body Irradiation then the following Saturday would be transplant day. However the final time frame hinged on when the cords could get to MUSC, I was not allowed to be admitted if the cords were not here.

Hanging up the phone I was in shock. I know we had been planning to go to transplant sooner rather than later, but now that it was here, literally right on top of me, I was freaking out. I was terrified that yet another thing had gone wrong, I was upset cause really who wants to be in the hospital over Thanksgiving and Christmas? All of the emotions that I had been keeping at bay came flooding out and I pretty much just shut down. The day before I was released from the hospital the last time the nurses set up a meeting so that I could talk to another lady who is 4 years post cord blood transplant. She was the sweetest person in the world, but she definately didn't sugar coat anything for me, and I'm glad she didn't, but her horror stories added to my freak out. I realize that the point of her telling me about her journey was not for me to dwell on all of the things that went wrong for her, as she's been battling with side effects from her transplant for 4 years, but to point out that yes, it's going to be hard, but here she is, she made it and so can I.

Friday was an intense day. On top of my leg pain being a constant nuisance, there was so much to accomplish. I have to thank all of the incredible people who have been working on my case as they pulled together to get everything done that I'll need, a process that takes longer than one day normally but they did it. They were able to coordinate schedules and work through everything knowing that timing is such an issue here. First things first, I had a CT scan done to prepare for the Total Body Iradiation (TBI). The scan was of my chest and lung area and is used to determine the thickness of my chest wall so that blocks can be made to protect my lungs during the process.

From there we went to the actual room where the TBI will be taking place. I had to lay on a foam bed on the floor while having my entire body be measured. A special plastic table like thing is constructed from these measurements and placed over me while recieving the radiation to ensure that the radiation enters my body evenly.





Before we left for the day we spoke with the radiation Doctors who were very nice. They went over the whole process, the side effects (good thing I never wanted kids as I'll be infertile after this) and generally just answered all of my questions. So far I'm most nervous about the TBI. I've been through the chemo, I know what to expect with that, but this is a new and very scary beast.

On a happy note, the cords were unable to get to MUSC till Tuesday so I was able to have one final weekend at home with my puppy. My leg was in so much pain though I barely realized I was home. At the clinic yesterday I was given a choice of coming to the hospital a day early and getting good IV pain meds or spending another day at home... I chose the hospital.

15 Comments:

Anonymous said...

I can't even imagine what you have and are going through. My heart goes out to you. I continue to pray for you and for your total health. Worship music is healing, also. God Bless you. love, Great Aunt Gloria

hockeychic said...

Hi Dawn:

I found your blog after reading about you on Annie's blog. Just wanted to offer my support and let you know that someone in Colorado is thinking of you and sending you healing thoughts and lots of strength.

Best wishes,
Caitlin
Denver, CO

Anderson Family Member said...

I am so sorry Dawn for all that you have gone through. i know if all of us could we would take your pain. you are in our prayers as my parents and i pray together each morning. i wish i could be there with you to hold your hand so please know you are alway on my heart. love nancy

Maria said...

i am so sorry that you are having to go through all of this, i just wanted to let you know that you are in my thoughts. i never comment here but i check your blog everyday & think of you. you seem like a strong person and i really admire that. i'll continue to keep you in my thoughts....
love,
maria (steve's gf)

Shane E Smith said...

Love you and miss you D. Stay strong!

Anonymous said...

Dawn, you are one strong person and a inspiration to anyone reading your blogs. We will pray that everything turns out in your favor. I'll try hard not to ever complain about having a bad day. Keep us posted and know that you are being thought about each and every day. God bless you.
Grandpa Tony & Nancy

Matt said...

Hi Dawn,

I'm so sorry you're in such pain and that things have all come at you so quickly. I'm so impressed that you're still smiling in all your pictures, you seem like a very strong person.

We'll keep you in our thoughts and hope that your transplant goes smoothly. Best wishes.

Gina P. said...

Keep fighting the good fight. You are an inspiration to us all.

Love you,
G and T

Toni Baker said...

Hey Girl,
What a whirlwind of events this year. It just seems like yesterday we were on the boat and enjoying Mike's shrimp boil. We love you and when you feel like you need a hug, know that one is coming your way. Stay strong and we will talk to you soon. and tell Mike not to enjoy giving those shots too much. I can't belive he does that!

Love,
"Mike's Mom"

Anonymous said...

DOUBLE D. You are the bravest person I know. I'm praying for you.

Lauren

Steve Vandergriff said...

Dawn & Mike,

My prayers are with you! Can I do anything? Let me know!

-Steve

Anonymous said...

Dawn – sending you and Tiffee lots of love and prayer. I’m so thankful that the good lord has provided a path for you to return to your healthy self. Hang in there my darling.

T.
(ABC Sports)

Annie - Steven's mom said...

Hi Dawn and Mike
Oh wow - so much to absorb and then have to deal with so quickly too!
Your smile is awesome and your eyes speak volumes.
Stay strong and determined to whip this disease and know that I am sending you hugs and........
love and light
Annie
Steven's mom

Anonymous said...

Dawn,
I think about you every day. I know you are strong and possess whatever fight necessary. As we say out in the surf... Just Keep Paddling...!
LB

Heather M said...

Love you. Your presents will be in the mail this weekend. Hope they get there quick - wish I could give you a hug, but these will have to do.

Mom, Dad and Ruth send best wishes and all their love too.

Heather