Onward and upward

Thirty-one days since transplant! Things are looking good, though the GI issues continue to devil me, and the docs seem to just be throwing darts to see what will clear it up.

Nonetheless, it has been a fairly easy recovery. I still have most of my hair, and no other common issues like mouth sores, skin problems, nausea or assorted other maladies that often crop up.

And I have been so fortunate to have my daughter and her husband with us --turns out he's a great cook! Christmas evening he pulled together  seafood chowder to die for, then made stock with the shells to create a swoon-worthy paella the next day.Alas he must return to Chicago so dear Esteban the French bulldog doesn't jump ship (and maybe Karl can work some too).

Boredom is now my cross to bear. My various Santas gifted several good, meaty books, a subscription to the New York Times games site and a weekly storytelling program that will compile my family stories into a yearlong memoir of sorts. 

And then there's the medication management. I take 16 different pills and concoctions to fight everything from potential fungal/viral/bacterial infection to liver function to graft vs host disease and cell rejection. Those all have their peculiarities (take with food or empty stomach; space 4 hours apart but don't take before lab work, etc.) so it's a complicated array. Good thing there's a app for that.

Between stuffing my face with food or meds, I try to get out at least once a day. The little Highlands neighborhood where we're renting a home is eminently walkable for a bust of sunshine and maybe a trip to the grocery. I'll work up to longer distances and more exploring if the weather doesn't turn too wintry.

Being idle is difficult for me -- I want to get things done without help. Asking someone to make breakfast for me just goes against my grain. 

But better safe than sorry so I take baby steps. It's not a race, but a journey to better health.

My Christmas/New Year's Wish

 I've been so fortunate this year to learn of the beautiful people in my life, so it seems a little selfish to want for more.

But spending lots of time in hospitals and isolation gets the ol' noggin working overtime, and I just cannot fathom what has happened to this country.

We are hardly United States anymore -- a 50/50 Congress is proof enough that there are some deep divisions here. But what I cannot understand is how one man --a silver-spoon multimillionaire representing some of the country's poorest areas -- can hold up our government.

The guy drives his Maserati to his yacht, yet worries that an extra $300 payment to poor families will be wasted on drugs. Oh, and it will cause  the debt ceiling to rise further. A minute fraction of the military budget could fund that program in spades.

And then we have the people who think a vaccine will 1. impinge on their freedom, or 2. allow the government to track their every move (as if their phone doesn't already) or 3. create even more demand for aborted fetuses for research purposes.

Most of us are alive an healthy because of the vaccines created decades ago. Not many folks are left in iron lungs these days. It's science, not evil.

I  was never a fan of the Bush presidents, but I do remember the elder extolling us to be a kinder and gentler nation -- where did that go off the rails?

We need to re-examine what's really important in life. My former Virginia neighbor alerted me to  a chronicle of a young woman diagnosed with leukemia, Between Two Kingdoms. She had a horrible case with too many side effects and setbacks, but in the end she seems to have conquered the immediate threat. 

To transition back to "normal" life, she takes a road trip and visits many people who corresponded with her during her illness (she somehow managed to snag a New York Times column to chronicle her cancer journey). The wisdom from the people she met was astounding, but the one that really struck me was a woman who'd lost her son to suicide then developed her own cancer. 

"The events of the last few years have been a terrible lesson in being present,, not just in my own life, but in  the lives of the people I love. Tomorrow may happen or tomorrow may not." 

Just in case it does though, why not be kind? For any number of reasons, some people struggle with daily living -- give them a break. To go back to the mantra of the '80s, think about What Would Jesus Do? He would show love for whomever needed it.

Can we honor that concept, and make this a nicer place to be present in the lives of all. 

Sprung for now

 YESSS! A few days later than planned, I finally got to leave Presbyterian/St. Luke's Bone Marrow Transplant center at the end of a very long day of waiting yesterday. 

Twenty-six days without fresh air or the feel of the sun on my face. Missed the first Evergreen snow (2 in.) and the officially latest first Denver snow (0.3 in), but I just glad to be out of my room.

It's a mixed bag, though. We have to figure out when and what of the 14 or so medications to take. No nurses to swoop in at just the right time to dole out expertly curated doses. 

I've left the IV pole behind in favor of  a fanny pack holding a little bottle of magnesium supplementation attached to my central line. 

All in all, not too bad, and I have the best unskilled caregivers: my husband and daughter. I can't even imagine how I would have done any of this without them.

And, in time for Christmas! Infection protocols prevent a live tree but the fake one will get gussied up with our 35 years of ornaments to make it just as festive --without the pine needle shedding.

With my beautiful family here to share my new lease on life, I cannot help but feel so very lucky. 

Sneaky farts and itchy feet

Fair warning: This might get a little gross.

Almost a week since my transplant day, and I'm still feeling pretty good, Doctors says things are progressing as expected. No major problems, but then the dreaded Graft vs Host Disease apparently doesn't kick in (if at all) until two weeks out.

The stem cells are not "engrafted" yet, which I think means they haven't started to produce their own blood cells. That's when the clash of old vs. new might occur. 

And I'm not sure how that will happen, because my own blood is seriously lacking these days. For example, my white blood cell count today is .20 where normal is between 4 and 11. That makes it difficult for my body to fight infection. Platelets, which allow your blood to clot and stop bleeding, are at 47. The dentists wouldn't even see me until I had a platelet count over 50.

So, the procedures of my first few days here --chemotherapy and irradiation -- have done their job. The expected side effects run the gamut (it can be anything, one doc said) but the common compliant is nausea and diarrhea. So far I've been lucky with (and medicated against) the former, but the latter persists.

The first night of the malady, my nurse warned, "don't trust a fart." I didn't get it until, well, I did.

My only other compliant sneaks in at night when I have trouble sleeping: itchy feet.

Maybe they itch all the time and I just don't pay attention to it, but it drove me nuts one night. Fortunately, as I suspect there is for any other malady, there's a drug for that. I'm not sure if Benadryl actually stops the sensation or just knocks you out so you don't notice.

As long as you don't ignore the fart.

Gratitude

Maybe I'm a few days late with this post, but I've been occupied.... Truth is, I've been feeling too yukky to blog.

Yesterday was the big day, Day 0, they call it in the transplant world. 

I started early with a dose of Total Body Irradiation, which involved lying on a table and having bags of rice packed around me to make a solid block and not moving for 10 minutes while the hulking machine on the other side of the room buzzed away (presumably shooting radiation at me). Then the techs turned me around and we did it again.  

Didn't feel anything; (knock on wood) no ill effects. 

Hung around my room for a few hours, then did that again.

When I was returned to my room, we started the prep for the transplant, which is really just a transfusion. A technician brought in a huge steel container that had held my stem cells since they'd arrived from Germany. They are held at something like -400 degrees until needed.

Each of the three bags of cells then defrosted in a room-temperature water bath before being infused through an IV. And now my body starts to assimilate those cells with my own.

It seems so simple, but the research that must have gone into this process boggles my mind. Yes, when you are lying inert with a giant machine whirring away delivering who-knows-what you think about strange stuff.

But the main thing I had to think about was the overwhelming outpouring of love and care that has come to me throughout this journey, and the apparently selfless actions of unknown donors around the world.

The transplant folks have all said a majority of the stem cell donors come from Germany, as mine did. Apparently, it is somewhat expected that you will register with the organization that handles transplants.

Here, that is BeTheMatch.org and I encourage you to check it out. Most of the people reading this are probably too old to be donors, but tell your kids and grandkids. Chances are you won't be matched and asked to donate (I signed up ages ago and was never called to donate). If you are a match, the donation process is only a little more than giving blood. And how great would it feel to know you'd given someone else the gift of life...

Bags are packed, I'm ready to go

 The waiting is over now. Tomorrow I check in to Presbyterian St. Luke's Hospital in Denver for the preparation phase of my bone marrow transplant (5 days of chemo, then 2 short bursts of radiation) to ensure all the bad cells are out of my body..

That is done through an IV port in the chest; that's the part I am most apprehensive about right now. Unlike many who have cancer, I have not had to undergo surgery in the process. I'm no stranger to the knife (3 c-sections and gallbladder removal) but I do not relish the pain when anesthesia wears off.

Then, thanks to a generous 18-year-old German woman, my new stem cells will be infused on Monday, then we wait some more to see how my body reacts. Will the "old me" welcome these new cells and let them take over or will they put up a fight and cause problems, what the docs call Graft vs. Host Disease. It can be as simple as a skin rash or more involved, but there are good medicines to handle whatever happens.

And that's it!  

The hardest part of all this has been following the transplant center's rule that my caregiver(s) and I must stay within 20 miles of the hospital for about 90 days. Our home is 28 miles away.

Thus began the search for temporary housing in Denver. True, our situation might be a little unique as my daughter will come from Chicago to share the load of caregiving. so we needed more than the one-bedroom apartment the transplant center usually arranges. And the 90 days will span the Christmas holidays so we expect to enjoy some family time together.

What a saga --we were almost caught in a scam where people would take our money for a house they didn't have. Buyer Beware! Then the landlord of a 1940s-era tract house wanted ridiculously extensive background checks at our expense (both financial and potential online exposure). 

So many others listed online either got rented before we got to them or were more scams, because the listing people NEVER responded to our requests for in-person showings. So rude -- if you post something for sale (or in this case, rent), have the decency to answer people who want it....

And then you have the differing tastes of the parties involved. I love old houses, and Denver is full of "cute bungalows" with tiny kitchens, clawfoot tubs and questionable stairs. My husband wants to be careful and have the comforts of home in this century, including a garage to charge his electric vehicle. 

A lovely compromise in the West Highland neighborhood (former site of Elitch Gardens amusement park) will serve as our home for the coming months. It may not be perfect (as our Evergreen home is) but it fills the bill.

I'll definitely miss the big picture window full of bright blue sky when I wake up each morning, the keening bugle of the elk in the yard and the first winter in Evergreen (most of it), but I'll return in March (likely) with a whole new immune system.

Can't wait to start over. I'll try to treat this one better.

More waiting

The good news... the latest biopsy showed no sign of leukemia. However, the experts assure me it will return, so the only permanent solution is a bone marrow transplant. And I have matching donors!

The bad news is I have to wait until there is no chance of infection. In my case, that comes down to teeth. I have bad teeth; from my childhood I have known this and therefore generally avoided dentists until major pain developed. 

That avoidance has come home to roost now as I need several procedures to ensure no infection. And, that it seems, has delayed the transplant. After meeting with the onologist on Thursday to hear the good news of remission, I received a text from the hospital giving me an admission date of November 24.

Really? The day before Thanksgiving? I know once it's all done I will have much to be thankful for, but it seems like we could have started a few days later (or preferably, a week earlier) without much harm. I kinda doubt the doctors are going to be working on Thanksgiving and its ensuing weekend.  

And it's almost six weeks away. I've already started packing for the hospital, I'm ready to get this show on the road. What am I supposed to do for the next 30 days? 

So, unless I am able to talk the team into an earlier date, I won't have much to post until post-transplant. It doesn't mean anything but I'm waiting for more good news to share.

Be careful what you wish for

 In the hustle and bustle of everyday life, most of us long for a day (or so) to just do nothing. No meetings, no calls, nowhere to be, no one needing us right now.

Being in the hospital for 3 weeks can change the perception of that. It's hard to do nothing. Even on vacation, we usually plan some activities to fill the days.

But the real kicker is that the body can get used to doing nothing and want to keep it that way. For the past week, I have been unable to stand or walk  for more than a minute or so. I am utterly exhausted at the slightest exertion.

Is it the low blood counts trying to recover from chemotherapy? The aftereffect of neutropenic fevers and double pneumonia? Or a loss of muscle mass from lying in bed?

The nurses just say it is to be expected, but that doesn't make it easier. Oddly enough,  I want to be able to do my laundry or make a meal.

Someday, when all this is over (i.e. when my bone marrow has recovered from transplant) remind me of that.

 

The roller coaster always lands on the ground

It was a surreal phone call this morning, as I lay in my Swedish Hospital bed for the 11th consecutive day. The cancer center wanted to schedule an appointment for tomorrow and a follow-up on Friday. Apparently, they knew more than I did. 

Soon after, oncologist Florencia Benton cleared things up with the great news that I would get to go home today!

This, after a thoroughly frustrating day on Monday when we had to wait for someone to draw my blood for lab tests. Normally, technicians I like to call  the vampires sneak in during the wee hours of the morning and steal away with a few milliliters of my essence. Then lab folks do their job to give the doctors information for rounds at 10 am. 

Yesterday there was ONE person available to draw blood in the ENTIRE hospital. She got to me about 3pm, a little late to be making decisions about discharge.

I just have to wonder what is wrong with our country that a hospital cannot find the staff it needs to carry out its job. Do people just not want to work at 3 in the morning? Or are businesses (and hospitals are, in the end, businesses) cutting staff to improve the bottom line? 

It's a mystery I can't solve, but hope that there's enough staff and resources -- in the facilities and in my own body --to continue on the journey to transplant.

Hot stuff

 Fever is such a strange phenomenon. You feel like your body's on fire, then can't get warm. Chills can wrack the body for hours but overcompensating can put you back into the fever zone. 

Usually fever is the body's  response to infection, the body's soldiers sent to do battle with invaders.

 But chemo pretty much wipes out those defenses, leaving one vulnerable to, well, everything. So doctors step in to help the process by identifying the invader and sending targeted medicines to wage war. Thus, the 5- or 10-day course of antibiotics most of us have taken at times throughout our lives.

The problem is determining which flavor of bad guy is attacking. There must be hundreds, and each responds a little differently to specific drugs. Though I'm sure it's much more scientific, it feels a bit like looking for a needle in a haystack, or spinning a roulette wheel.

Or maybe there is no bad guy. Neutropenic fever occurs approximately 60% of the time when chemo has wiped out the immune system. So what fights the fever when there are no "soldiers?" Fresh recruits, of course.

But before the white blood cells  and neutrophils can regroup, frequent and high fevers make life pretty miserable. I'd been told 24 hours without fever would be a landmark, but time after time, I'd get only 12, 18, or then 20. So discouraging!

About this point, I got frustrated with the "telephone tag" between St. Anthony's Hospital and my oncologist from Swedish Medical Center, Dr. Chris Benton. A little hissy fit got me the transfer I wanted.

Talented at breaking down the complexity of medicine, Benton put a lot in perspective with this illustration on my room whiteboard last weekend. Early on, there is only fever, but as the body's defenses build enough to fight, the intensity and frequency of fevers slowly dwindle.

 For the first time in two weeks, I have hope there might be an end to this carousel of discomfort. Though the infectious-disease docs still want to be absolutely sure there is no infection. I'm pretty sure I've reached the final bump in the road.

.

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.

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...

No strings on me

 I'm freeeeee! The Blue Fairy granted the wish for me to lose the oxygen tubing last night and I'm holding steady with 90-ish percent blood oxygen, which is totally normal here at altitude.

I'll still get the occasional antibiotic, blood product or other fluid  through the IV as these amazing professionals keep track of the complex system that is our body.

So now we wait. Sitting in a hospital bed doesn't carry the same temptations of Pinocchio's Pleasure Island but it is a scary new world out there. From Covid to plain ol' pollen, anything could trigger infection.  

This gives me a chance to offer a shout-out to a really neat product for this very situation: My sister-in-law Sally found Fresh Cut Paper to send a beautiful 3D pop-up bouquet. No mess, no watering, just the floral fanfare!

At least I have pretty things to look at even though I'd love to be home in my pine-shaded bedroom. Part of being a real boy is weighing the risks and benefits and listening to the wisdom of my own Jiminy Crickets.

Cresting the peak

 In Colorado, we love our mountain analogies. I started this journey almost 2 weeks ago, and I probably have about two weeks of hospital time to go. So, I've climbed my 14er...

Though it really has not been a mountain for me. I've been so very lucky, and I credit the well wishes of so many in my life. But sometimes the way down the mountain is just as perilous. 

I have virtually no natural defenses now so infection is a real worry. That's why I get to enjoy the amenities of Swedish Medical Center a few more weeks. 

The people here are amazing. From the sweet little lady who cleans my room to the legions of caring, smart, encouraging, all-around amazing nurses, the team here is top notch. 

With that team and your thoughts, it won't be hard to get back on solid ground.

Cutting some slack

 Whether we are Olympic athletes or plain-old human beans, it seems we all expect too much of ourselves. Do more, go further, reach higher. Why not just be happy with where we are?

Sitting in my hospital bed, feeling so much better than I thought I would, I have various choices each day: 

--the always popular sleep (which admittedly is interrupted often enough around here);

--daily exercises for breathing, bladder control, leg muscles, arm muscles;

--my long-standing habit of beating the daily solitaire, sudoku and word game challenges on Microsoft. I've rarely let a month go by that I don't get perfect scores on the latter two, but seeing as I missed a few days earlier this month, I have officially given in and decided July will not be on the leader board.

-- the lure of junk TV, from the insipid to the intellectual;

--communicating with everyone who has shown such care and affection in this journey. It is warming and touching but sometimes overwhelming. Still, I know that I want to to know what is going on with you when you are in need so I will try to keep you in the loop as well.

It's much more fun that arm exercises anyway!

Great expectations

 Getting back to the Olympic parallels (not the apparatus), the huge hype over who's going to win what  sets up unrealistic ideas about what these humans can do.

Likewise, we always hear about the awful side effects of cancer treatments. My dear friend from Dallas must've done research and sent a early-attack pack of ginger chews. I hesitated to try before I needed one, not wanting to jinx things.

The Americans have had some success, but not in the big name sports. The earliest one I saw was the first woman to win foil fighting .We've since seen a brother-sister pair who both won gold in the sport (which escapes me). I think I saw something about a Colorado teen who  grew up in Rifle and won gold in, what else, air rifle.

So, it hasn't been a blockbuster Games so far, and I'm happy to say I haven't had any starring-role side effects either!! The hair is still thick as ever, and all food has stayed where it should be.

Olympians certainly have more folks cheering them on as I do, but I have to think the beautiful outpouring of affection from all corners of my life has had a positive effect on me.  No self-respecting spirit could resist the earnest thoughts and prayers sent on my oh-so-grateful behalf.

So no matter how many hairs find their way to the brush, or if a little of (not-too-bad) hospital food goes astray, I will remain incredibly touched and blessed by all of you. 

Thank you.

Freedom is not just another word

 Earlier in the day, I struggled with what to write. OK, I'd completed the first trifecta of treatments: 500 ml of curing chemicals/poison coursing through my veins, 4 chunky tablets down the hatch and a shot in the belly repeated at 4 am. 

None of it made me react in any way (other than needing to urinate a bit more urgently). And therein lies the rub.

Because I had come in to the hospital in pretty bad shape, I was assigned as needing assistance at all times, entailing:

--a bed alarm sounding like your worst gym teacher if I moved off center

--wires and tubes connecting: oxygen from nose to wall, a self-contained (thank goodness) heart monitor, an IV and a Pic line with two outlets directly from my heart to the Christmas tree-like IV pole that held an ever-changing array of antibiotics, blood products, saline solution to keep me hydrated and various other pharmaceuticals

--a Velcro sleeve connected to a pump that keeps my legs from developing clots cuz I'm stuck in bed...

--the hospital gown is also a key to the level of assistance needed and for 7 fulldays mine has been the most barf-worthy mustard color

--ever-vigilant (weeell, usually) staff.

So, if I needed to remove any of said LIQUIDs from my system, I had to call staff to unhook me and help me to the commode or toilet. I quickly learned that "I'll be right there" could mean anything from 3 to 45 minutes (I am not, after all ,the only person here). Add in that my 63-year-old bladder is not the most patient on its best days, and  we had a forecast for frequent flash flooding.

Us Boomers have driven huge advances in incontinence products, so it wasn't too much of a problem but still a bit annoying when you prefer not to have to ask for every little thing.

So it was a great thrill  when the nurses at shift change this afternoon announced they were going to give me a test, and if I passed I could be independent. I've traditionally been a good student with no real anxiety about testing, but this was truly a pop quiz.  

They disarmed the gym teacher voice and I unhooked my leg brace/clot prevention system. Properly instructed, I pulled the giant plugs from the wall (never touch the red outlets) and dragged myself, the IVpole and roughly 20 feel of oxygen tubing to the toilet and back. Success!

I'll likely mess up at least once, but hopefully will not fall on my face, arm, IV or other critical piece. 

The piece de resistance:  I graduate to a much calmer blue gown (when they get to it,). I am free!

And just in time, as I expect the next day or so to bring on any nasty side effects and I'm not sure I'd be able to tell if I got anything on the old gown.

 

Waiting to exhale

Since this odyssey started a week ago, waiting has been the one constant.

From waiting to see the doctor to holding our breath on test results, the space between occupies much of life. So it seems appropriate that I watch the Opening Ceremonies of the Summer Games as I wait to see the effects of my first chemo regime.

Those paragons of athletic perfection had to wait an entire extra year to do what they had trained to do most of their lives, and such skills so not lend themselves to inertia. You snooze, you lose is all too true with the demands of sport. So, I'm excited to see them get their chance.

 I didn't even know I was waiting until a weird back pain a month or so ago sent me to the doctor. Are you waiting if you don't know what you're waiting for?

One twist to these games is the Parade of Nations is based on the Japanese alphabet. I'll have to ask my son if he remembers it from high school, but it is not what we expected. Started with Ireland but not Iran and Iraq or Israel. And it's more equitable in some ways: Zimbabwe never really got much of a chance at the spotlight, following all the other countries.

I'm not sure I'm even going to have the energy to see Team USA. But I know they'll be great and will go onto to many medals and firsts and records, making us all proud.

And that is how I feel about these chemicals the doctors have sent coursing through my veins: A lot of people have used their prowess to concoct the best defense, and I'm ready to let it do its thing, whatever that brings. 

More to come...wait and see

Let the games begin

Casa Leftwich picked up and moved to the very picturesque town of Evergreen a few months ago. Several of the roads around the Western Denver suburb are seriously challenging, with road signs showing multiple curves so that you can't be sure if it is warning of the road or potential snakes ahead...

So it occurs to me that those signs could also be indicative of my life. I've twisted and turned from Woodward-Bernstein -inspired journalist to freelancer -mom to natural chef. I was poised to jump back into that role when Life threw me another curve.

Serious health issues have a way of doing that. And I got a whopper last week with an out-of-the-blue diagnosis of Acute Myeloid Leukemia. 

Myriad tests, scans and medications have filled the week since I hit the hospital. I had pneumonia and a blood clot in one leg, and the biopsy details for some reason were sent to me, not the doctor. Yesterday,the oncologist actually took a picture of the report on my phone then scurried off to the lab to give the info to those creating my treatment...

But we got it now, and I have great confidence in my team, especially Chris Benton, a native Texan who trained at MD Anderson but had the wisdom to relocate to Colorado! 

They'll be showing up soon with a three- phase regimen:  oral meds, IV infusion and a few shots. There's no way to know how I'll react but the people have seen and taken care of it all.

With their help and good thoughts of my huge contingent of family and friends, I am sure I will come out of this ordeal in top form.

I'll try to keep you updated here so you can check whence you want to see what's going on.  I'm stuck in bed so my brain comes up with all sorts of stuff.  Having the Olympics on TV should provide great distraction so stay tuned for my unique insights.