You folks rock!

Thoughts and prayers have been mocked ineffective platitudes, and for someone losing a loved one to random violence they are but often all we have.

As I've written before, my journey with leukemia has definitely been smoothed by the amazing outpouring of support from all sides. When I thought the next hurdle was just finding a domor, I posted my hope for that.

But after 8 days of fever and chills without a seeming end, a new priority popped up and I hesitated to ask for more help.. As newspeople know, after 5 days, the news and fish need to be thrown out.

OK CHunt (HS journalism teacher}: I'm burying the lead again.

The exciting news, which I am attributing to your T&P, is that 4 people are willing to donate bone marrow cells.

I just have to get better.

The other shoe

 Given my relative breeze through Leukland, I suppose I should have expected it might not all be clear sailing, or maybe paid attention when the nurse practitioner told me 90 percent of people in remission end up back in the hospital with an infection.

So here I am, and that's why I have not updated in a while. It really knocked me for a loop. Chills and fevers alternating throughout the day. And the docs are still not sure what's causing it. Through MRI and CT, I have had every part of me scrutinized. Sometimes that is more than you want to know...

The oncologist says sometimes it's just the body reacting to having no immune system,. So, while I wait for my parts to kick into gear, I'll share how great these women are.

M and C were my roommates and coworkers, spreading news in suburban San Antonio, the first professional job for most of us. Needless to say, we bonded big time. I don't remember who moved up first to the big -city San Antonio Express-News but she brought us along in time, and we added another 20-something single woman to our crew. Boy, we had some wild times, and I think that is where I learned to love cooking.

We did not attempt any of that (doctor's orders for me) this weekend, but I did want to offer the bounty of  our state. Olathe corn and Palisade peaches just had to be consumed. Unfortunately those and some other menu items were the very foods M was not to eat, she now knows.

Teaching Mah Jong to the group became exceeding difficult, as the sounds of distress intensified. Concern about my fragile system prompted me to jump ship, or in this case, wheedle a ride down the mountain to home. M needed a thermometer anyway.

The short-term rental the ladies found was a great place, with awesome views and very challenging access (More than one of the flatlanders--Texas and Virginia--commented, I can't even imagine driving this in the rain. I didn't dare correct them for at 3 am M was in serious enough shape to warrant a doctor and whatever lurked on the road. I'm not sure it would have had a chance against these ladies, though.

Of course we were sad to have not completed our long-lost adventure, but had a good time and are making plan for the next one: Within 20 miles of hospital? On call nurse? Thtt's traveling while elderly, I guess.

Matchmaker, matchmaker, make me a match

The waiting game continues, toward a new goal: the only cure to this nefarious condition, stem cell transplant.

Many things need to line up just right for this to happen, but the team at Colorado Blood Cancer Institute seems to have worked that magic many times with great success.

First, I need to be in remission, which I am and hope to continue to be while this plays out.

Most importantly, though, is a donor, some selfless individual of Northern European lineage who will need to take several hours to give me my life back. The initial screen showed 30  potential matches, so I am hopeful.

From there, it is another hospital stay of 3-4 weeks, then a very compromised immune system that will require me to stay within 20 miles of the hospital for 90 days. (unfortunately, we live 28 miles away). 

There's no telling when this will commence, but it looks like I won't be doing much leaf peeping or early-season skiing this year. I may miss our first elk rutting, which I am told is a sight (and sound) to behold. And depending on the timing, the holidays may look very different this year.

But if it gets rid of those nasty cancer cells lurking in the my body, it'll be a small price.

Lessons in patience

Ironic, isn't it  that patience and patients are so similar sounding, and also so intimately connected? For as patients, we must endure so many delays, backlogs, reschedulings and just plain ineptitude that causes all of the above. 

It is enough to try one's patience, for sure.

Today, I was supposed to start a new round of therapy involving 3 days of infusions, 10 days of twice-daily injections, 7 days of an oral medication I took before and an indefinite dose of a new pill to address a mutation in my leukemia. 

So we took the 50-minute drive to the outpatient infusion center, a pleasant-enough place with caring nurses, warm blankets, free snacks and reclining seats looking onto green trees. I settled in for the 2-hour infusion.

I hadn't even gotten through a chapter of my novel before the nurse informed me that there was an insurance issue with the injectable drug, and since protocol is to start the therapies at the same time I would not start treatment today. If I were to receive the drugs Tuesday morning, we could go ahead with a slightly altered schedule.

By 3pm, I hadn't heard from the clinic or the pharmacy (located in North Carolina, i.e., Eastern time zone), so I called and entered the wonderful world of phone trees.

Reciting my name (with spelling) and birthdate has become almost second nature now, so I finally reached a pharmacist who found the order but could not explain why the drugs had not been -- and would not be -- shipped today."Probably a prior authorization thing," he ventured, noting that he would attend to it first thing the next day. 

Sure, no problem, those of us already stressed dealing with a disease get to wait just a little longer. 

Patience for the patients.

 

Good news and....

 We killed it !

The first biopsy after treatment showed no sign of leukemia!

The sneaky little devil might come back, though, so another biopsy tomorrow will show what has happened since I stopped treatment.

And Monday I start another round of treatment -- consolidation, I think the doc called it -- to ensure that it stays away. That's three days of infusions, 10 days of injections and 14 days of oral medication. But I get to do it outpatient.

And enjoy my own bed with the breeze wafting in the window and the beautiful pines waving.

Home, sweet home

 Ah, a full night's sleep in my own bed. After a yummy dinner prepared by my daughter. I must be dreaming.

After the nightmare that was my hospital discharge, that is.

I signed the release papers at 12:21 p.m. and we drove away at 4:49. All because of our screwy insurance system.

Prescriptions for medications I would need in coming weeks were initially sent to the pharmacy near my home, but the nurses wanted to make sure I left with everything I'd need so they transferred the prescriptions to the Walgreens in the hospital. OK, that'd be easier, after all.

But insurance needed a "prior authorization" for one of the meds, meaning they wouldn't pay. To the rescue comes my case manager with a coupon allowing a 30-day supply. 

Oh, but the pharmacy doesn't have one of the meds. They want me to call around and see where I might find it. The charge nurse who has dealing with this calls the home pharmacy and transfers all the meds back there.

But wait, I had already paid the copay at the hospital pharmacy. More confusion ensues and hours tick by as I'm all packed and more than ready to go.

Finally, the hospital pharmacy packs up all but two of my meds and we are instructed to pick up the other two at our home pharmacy.

The bright light in the midst is the lovely nursing staff pops in with a balloon bouquet thanking me for letting them care for me! What an amazing group of dedicated professionals I was blessed to be with...

Now, in rush-hour traffic, we head home. And, of course, the local pharmacy has only a two-day supply of one medication....

Nonetheless, it's great to be home.

She's coming home

One month to the day I was rolled into this hospital, it seems I will get to be rolled out, albeit in much better shape.

My body is responding well and making new blood cells, so there is apparently no reason too keep me here. I'm sure follow-up visits with the oncology team will be required, but being at home will be such a relief.

My own bed (though I'll have to change it myself), my own food (not delivered to my bedside three times a day) and my own sleep schedule (uninterrupted by well-meaning nurses), plus not having to juggle family visitors (two's the COVID limit).

I have no doubt that the amazing outpouring of support from friends and family far and wide have contributed to this oh-so-easy recovery.

A month ago, I didn't know what to expect from a diagnosis of leukemia, but I have been pleasantly surprised all along. I know this is not the end of the road, but it sure looks like a easy hike ahead.