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.

Scary stuff, not so much

Friday the 13th. I don't recall if it was a thing before the scary movie, and I don't much believe in the superstition now. It's just a coincidence of the calendar, after all.

For me today, it's one day closer to getting out of this hospital. Biopsy was yesterday and I'm sure the docs are poring over the results, ready to craft the ideal treatment plan.

Indications are it will be OK. I've started making platelets again, and I came through a digestive upset with only a little unpleasantness.

A daily walk to the hospital's memorial garden seems to be the ticket to better sleep. They won't let me go without a nurse, so taking them from their other patients and duties makes me feel a bit indulgent, but they enjoy it too!

Ch-ch-changes

Nothing like putting your thoughts out there to have them instantly debunked!

I had barely posted yesterday's missive that I returned a walk to find a delivery of  two new cards!

Whether it was the breath of (slightly smoky) fresh air, a brutal Five Crowns battle where my son walloped my husband and I  or the lack of sleep the nights before, I slept like a stone.

And this morning, the Today show featured three Olympians, including the only mother-son medal winners.

So, you are still paying attention, and we all appreciate it.

Tomorrow is the Big Day -- bone marrow biopsy. By next week, I'll know how my body has responded to the treatment and what's next.

Out with the old

When I started writing about this journey, I suggested correlations to the Olympics starting at the same time. Amazing things have occurred on both fronts, from world records to a complete lack of side effects.

The Summer Games are over and no longer occupy our television and news feeds. Likewise, the cards have stopped coming and this blog is attracting fewer readers and comments.

It's OK, we're old news.

Tweets limited to 140 words, LOL/OMG texts and news blurbs have shortened our attention spans, and we're just too busy to delve into anything for very long.

Until we're ready to sleep.

Like the cartoon accompanying this blog (from a theme-park I can't recall) says, Editors don't sleep; we nap, doze, drowse or slumber.

Except that I apparently can do none of those in the hospital. Once I brushed away the obvious symptoms of illness, the peaceful escape of sleep began to elude me. Maybe it was being awakened at 12, 3 and 6 am for injections, vital sign checks and blood draws.

I've heard it takes 21 days to develop a habit, but I guess I'm a quick study. 

And likely not the only one with this issue. Phone apps and podcasts promising quick and restful sleep are all over the Internet. Even my oncologist had a recommendation! 

Of course, nothing in life is free, so the ads and promotions for other bed-friendly products must precede whatever calming, sleep-inducing technique you've chosen. NOT relaxing.

I've tried it all: bedtime stories, nature sounds, meditation, chamomile tea, a lavender sleep mask, even medication. The nurses have been wonderful in delaying or waiving their interruptions. The mind just refuses to shut down.

My brain needs a CTRL-ALT-DEL button.

It's always something

 Roseanne Rosannnadanna likely brings back memories for my older friends; those classic Saturday Night Live had me ROFL (before we turned everything to initials).

This past week has had plenty of moments ripe for Roseanne's diatribes. On Wednesday, th nurses informed us the city of Englewood (where this Swedish Hospital lives) had found e.coli in the drinking water.

Okaaaay, the exultant shower I'd enjoyed Monday was suddenly a threat to my embattled immune system. Seems the city found the bacteria in a routine monthly check on the first Monday. WHAT? They only check once every month??? 

Bottled water and hand sanitizer to the rescue... 

Then we learned our new neighborhood was seal-coating the roads over the next few weeks, requiring cars to be off the streets all day and leaving a pervasive rotten-egg smell. Trapped in your house with noxious air makes another week in the hospital seem like a vacation!

Vacation or not, the 300sf room is losing its appeal, and this morning's talk with the oncologist tarnished that even more and dashed my hopes to be home before my son leaves for college.

I know they want to be extra careful -- allowing time to see how my body responded to the treatment (the more pleasant word for chemo) and ensuring that I am in  good place to receive any additional antibiotics or blood products and, of course, avoid outside infection.

Still, part of keeping up my spirits was the thought of my husband, kids and I gathered around a table enjoying each other as adults. Even with the rotten-egg smell.

Small victories are still winning

 OK, so that last post was a little downbeat, but I'm better now.  I got to go outside yesterday!! First time in almost two weeks, and (thanks to my amazing nurse) I was able to surprise my husband and son on their way in to see me!!!

And my daughter, visiting from Chicago to help out, brought me real clothes today. As much as I appreciated the upgrade to a blue gown a week or so ago, my own things feel so much more comfortable -- and human. 

But the thing that totally buoys and amazes me if the incredible love I feel from all corners. My church family and other friends in Boulder pepper me with beautiful cards and notes. 

And -- this is so amazing-- the Labor Day reunion of long-time girlfriends I was so sad to miss has relocated to Colorado for ME. Those three smart, sassy women changed flights and worked it out so we CAN all be together. I can't wait to show them my beautiful Colorado.

For now, though, the biopsy is set for next Thursday, and likely discharge the Monday after. Onward....

Dashed hopes, future dreams

 Like the triumphs, upsets, disappointments and amazing moments of the 2021 Olympics, this leukemia journey has followed the path of the unexpected, awe-inspiring and just a little upsetting.

Today, as we discussed when I might be released (Aug. 16, cross your fingers), the oncologist mentioned that it would not be the end. I will have to continue with chemotherapy, on an outpatient basis.

This is not a cold that goes away. Even the big, bad drugs cannot kill it forever.

Suffice it to say, that threw me for a loop.

Somehow I thought I would do my time in the hospital and come out on the other side as before. July/August 2021 was the sick month. Turn the page to September and I'll be right as rain. I almost even booked a flight to Texas for a reunion of girlfriends on Labor Day.

Nope. The road may be a little longer than I thought it would be, but it's not a dead end.

Hit me with your last shot

 Two down, one to go! The second part of my chemo regime ended at 3 am this morning with the last shot into my abdomen.

Eleven more days of four giant pills, and that'll be it.

So the question is, do I need to be in the hospital to swallow meds? Of course not. 

What I do need is to be verrry, verry careful to not pick up a stray germ that could wreak havoc on my non-existent immune system.

Here at Swedish, everything is focused on that objective: daily room cleaning, nightly bed changes, a antiseptic wipedown and fresh gown. And then there's the watchful presence of the league of angels who attend to my slightest wish. 

Annoying as it is, their 3am vital-sign check and blood draw works to keep me safe and inform the doctors if something isn't looking right in time to fix it.

I'm almost down the mountain now, so I just need to power through the inconveniences. 

And thrice-daily room service...