No matter the storm clouds, the view is beautiful

No matter the storm clouds, the view is beautiful

Wednesday, 8:50am

Sometimes its two steps forward, one step back. While Friday’s biopsy was done with remarkable efficiency. The drugs, the stress, the whatever kicked my ass. It was not until Monday that I felt back to where I was before it.

But today, Wednesday, we get to find out results. Honestly, I’m not nervous… I can feel it, everything is good. I have really no idea what results will be ready when we get there, except if I’m 100% donor, or there is still some of my bad cells left. As I said in the last post, its virtually impossible to kill off all of them. But we certainly do not want them to grow and multiply.

Still doing the routine, and I am getting a little stir crazy from being in the house. I can’t drive, I can’t go out into the sun, without major protection. Apparently, sunlight can trigger graft vs host disease. And while I know I will get some just because, why add to the plate. And this is a good sign, I feel good enough to want to go do something. I certainly won’t be running, or chasing the kids. Something easy and low stress. Any ideas?

~ Mark

Thursday

Life is crazy, you know? You would think that being minus two kids to chase and pretty much being chained to the house, we would have tons of spare time on our hands. Ummm…yeah, no. Hence, why I didn’t get my two cents in yesterday and am posting late.

So the biopsy, all great results! 100% donor cells, no signs of dysplasia. As Mark likes to remind me (and sometimes I remind him), that is from just a sample of the marrow. Who know what could be lurking outside that sample. But you know what, I am going to take it!

Wednesday was labs, doctor visit, and treatment if needed. So they took about 7,000 vials of blood. We got 6-7 pages of test results (nope, not kidding about that part) and basically MOST of it looked good. Blood counts were good. Some are coming down a little, but still acceptable. And some are even in the “normal” range. One little issue though. His kidney function was out of whack.

Apparently, when he had his biopsy done, the doctor’s side put in an order to the biopsy side that they were to give him a liter of fluid while they did the biopsy AND relay the message that he was supposed to reduce his tacrolimus (anti-rejection/immuno-suppresant) from 6 pills a day to 4. WELL, neither of those things happened, which we didn’t find out were supposed to happen until yesterday.

So, he was immediately sent over to treatment for fluids and told to stop taking the tac until we talk to the doctor side again on Friday. And we had to go in this morning for fluids as well. Then tomorrow we go in early, early to get labs drawn and see where his kidney function is now and possibly get more fluids and maybe/maybe not start his tac up again. The tac is kind of a crucial thing so I hope they get this figured out soon.

In the mean time, Mark is starting to feel a little better. He went for a walk yesterday, about 2 blocks, and then walked from the car in the parking garage to all of our appointments. That is a LOT of walking. Then he did it again today. And went grocery shopping with me. This is a lot of walking and exercise for him. After about 15 minutes in the store he said he was done and could he have the keys and go wait in the car. Yes, my dear, yes, you can. You have earned a rest.

Tomorrow after all the med visits, I am driving home to pick up the kids to bring them back here for the weekend. Can’t wait to hug and kiss the kiddos!

Oh! And if just all of this fun wasn’t enough. The owner of the duplex we are staying in has decided to sell it. And found a buyer in 3 days. So we have had inspectors and repair people up the ying-yang trapsing through here for the last week. We aren’t getting kicked out by the new owner, she bought it as investment property and our property manager has a 2 year lease on the place that the new owners have to honor. Monday, they are replacing the “stack”. I think that is like the main drain for the house. So no water, can’t use the drain. They have to tear out the kitchen sink cabinet. The city inspector has to come and approve it, then they have to put the cabinet back and clean up their mess. Guess who is staying in a hotel Monday?

I tell ya, the fun never ends.

But all in all, I am grateful for the way things are going. Knocking on wood that they continue. 🙂 I will try to pop in real quick tomorrow and let you know what comes of the new blood tests.

Aloha my hoaloha!

~terri

 

4 Comments

  1. Idea for low-stress activity: crossword puzzles in comfortable environment?

  2. Linda Senenfelder

    Sounds Absolutly Grand. Couldn’t a for better news. We so keep the prayers and pixie dust coming. So happy to hear all the good news. What’s a little set back with the apt. A motel will do for the nite. One minor set back is ok.
    Love and hugs to you both.

  3. 100%!!! I am so happy for both of you. (knock, knock, knock – gotta keep it going!)

  4. A journey of a thousand miles…but steps forward are steps forward. Aside from the mess, things seem to be trending in the right direction. Power on, Mark and Terri! 🙂