Winding down

 The Olympics are over, but my leukemia journey continues. 

I was diagnosed in July when the Summer Games dominated the airwaves. At the time, I drew some parallels to the struggle of athletes and my body to fight this invader. 

And now, as the Winter Games wind down, so goes my fight. Weekly lab tests indicate no bad cells, and the team is weaning me off many of the 18 medications I once took to combat the assorted effects of chemo, radiation and a new immune system. 

All goes well. I got to get my new Covid vaccine (since the above treatments wiped out the first one). No side effects! I love this new immune system! 

The true test will be the next biopsy, probably in late March, so let's keep our fingers crossed for no sign of mean ol' leukemia cells.

More hope and some change

My most recent visit with my Colorado Blood Cancer Center doc was very positive: (Should I see it as a sign that his name is Mountjoy)

No indications of leukemia in the blood! We'll wait a bit for another biopsy to see what's lurking in the marrow, but things are looking good.

We've cut out the steroid prednisone, and that in turn reversed the hypoglycemia, so I no longer have to draw blood and inject insulin 4 times a day!!

Throughout this very roller-coasterish journey since the transplant, I have spent many sleepless nights (another joy of prednisone) thinking about what I want my life to be, however long that may be.

None of us knows how much time we have, after all. We could be killed in a car wreck or set a new record for oldest human.

But I did determine that I want to be closer to the people that matter to me, and living in a too-big house in the beautiful forested mountains of Evergreen is not doing that.

So, much to my husband's dismay, we have agreed to sell the house we bought just 9 months ago. My vision has been that someone who lost everything in the December fires in Louisville and Superior will find solace in our home. It's not close to the affected areas so schools and jobs have to be considered, but I am asking the universe to let the right person find our home.

And that means we have to find a new refuge. I would prefer to return to the mountain-hugging environs of Boulder.but supply, demand and finances are major challenges (along with the loss of 1000 homes)

So, in addition, to the battle going on inside my body, I get to balance selling a house, buying a new one and moving in the next few months. Your continued thoughts are all that sustain me!

As I see it ( and I could be wrong)

 For better or worse, I'm not a quitter. When my body decided to attack itself, it went full on. Mutations add a bit of color ro the mix. But the early chemotherapy seened to get rid of the cancer. I was twice told I was in remission.

So the stem cell transplant was to put an end to it altogether. Only it didn't quite work as well as hoped. Yet. The latest bone marrow biopsy indicates my body is still making nasty leukemic blasts that invade the good cells. The eminently qualified team at Colorado Blood Cancer Institute is crunching every number and investigating options galore. If there is a chance, they will find it.

But my stubborn leukemia may just win the battle. I suspect there will be no cure. My time on this beautiful planet will be cut short. (the way our country is going this is not a totally bad thing)

But I am going to try to make a life of joy and fun and connecting with those who have supported me throughout this life.

Come along for the ride.

No news is ....

More than halfway though the transplant journey now, I am cautiously optimistic. Nasty prednisone pills are hopefully a thing of the past , along with the insulin resistance they cause.

I had to celebrate with ice cream, especially after my platelets did a big recovery over the weekend. They had tanked last week so  Sunday morning infusion brought me in to learn I was twice the needed level!

Hopefully, biopsy results will be forthcoming. My leukemia has a mutation that responds to a particular drug, and we have upped that dosage to fight any invaders.

But now we wait and see, holding fast to your wonderful thoughts and prayers and universal love.

360-degree turnaround

 I do not know how I could have gotten things so wrong. It's not the end of the road but just more .uncertainty and tests to see what is really happening in my body.

At my clinic visit on Tuesday, I was pretty sure I was told my transplant had not really taken, and there were leukemic cells replicating. Morose faces saying "we're sorry" from physcisan assisstant, transplant coordinator and even a social worker.

Today with the doctor it was much more hopeful, while still being unclear. We just  need more time to let the donor cells work. There are stil many twists and turns thngs could take, but it s not OVER. 

To manage all this, I'll be on lots of meds for a while. The worst is steroids, which cause high blood sugar so I'm learning the ropes of insulin management. My poor fingers are dotted with pinpricks but that should be short lived. 

And sleeplessness is a hallmark so I often lie awake thinking about all the what ifs and trying to control the future.

At least there is one...

Whiplash

I am soooo confused. Today's appointment seemed a slam dunk: Labs, discussion of the blood sugar issues and a visit with a physician's assistant.

So, when said PA sat down with a morose look, I was taken quite aback. She seemed to be saying that the blood work and biopsy indicated the transplant did not work.  The donor cells are not fighting the leukemia.

How could this be true? I went into the transplant with full remission.But cancer cells are sneaky little devils and mine particularly so.

There will be more tests and the return of a chemo drug, but most likely I will have to live with this disease until I can't.

The news seems to change from one lab draw to the next, but I cannot believe they would have told me this shocking news if they did not believe it to be fully true.

So, I guess it's time for the bucket list....

In awe

Maybe I was delusional aout this whole leukemia process, but I had been thinking that I was following the protocols set forth from the previous years of research and treatment. 

You have AML, you get this chemotherapy. It works or not, or they try a different one.

But since the bone marrow transplant, I have learned it is so much more individualized. Yes, there are the standard medications that all transplant patients get to prevent infection, rejection, etc.

And I finally spoke up after about three weeks of gastrointestinal issues: maybe I didn't need to be on a certain antibiotic if there was no infection. Why was I taking a nasty liquid to quell upper respiratory distress that I didn't have.

And lo and behold, the team listened to me. We dropped some things with good success, and are continuing to hone in on what my body needs.

But the most amazing development for me was a report on my 30-day biopsy. At first, my doc said there appeared to still be some leukemic cells in the marrow. Oh that hurt -- other biopsies had shown remission. But he explained that the pathologist had taken my individual cell and put it through its wringers to find out what was really going on. It could be just immature or something else that could be good or bad down the road.

What amazed me was that was just for me. (A couple days later, it was determined to be innocuous, whew)

Even with that good news, though, came the judgement that the steroid treatment to ensure total engraftment is playing havoc with my blood sugar. So I get to start on insulin. Poking my finger 4 times a day is simply no fun. 

But we expect it to be a short-term problem. Weaning off steroids should set things back to normal in a month or so. 

There are likely millions of people who endure this for their entire life, and while some advances have been made, it is a complicated system. Somebody really needs to do user interface or usability studies to make it a lot easier. Massive instructions in tiny print do not work. We need pictures and step-by step how-tos..

After a couple of tries, though I was able to successfully test and dose myself. So I guess it's not that hard.

Now I just have to figure out sleep. My body is working very hard now to fix itself, and that keeps me awake (maybe it's on the time zone of my German donor!)

I'll try not to post my wild 3 am thoughts...