Anemia

Today's entry is more of a journal than anything else.  It’s 3:00 a.m. and I’m wide awake.  Some sleep habits that started in the hospital have followed me home and while they’re not bad habits, they’ll be difficult to incorporate into real life.  Right now, I’m sleeping when I’m tired, so last night while watching TV, I nodded off around 6:30. I checked in with family to let everyone know I’m OK and then went to bed about 9:00.  Six hours of uninterrupted sleep leaves me awake at…yes, 3:00 a.m. So, it’s not a bad thing, just a different thing.

My fourth round of stab-me-in-the-back chemo was supposed to happen yesterday morning, but my lab reports showed that my platelet count was below 5,000, which means that I could bleed very easily. So, instead of the chemo, I got a transfusion of platelets.  A normal platelet count is anywhere between 140,000 and 420,000. This is an expected part of the chemotherapy that I underwent the week before last. In fact, I’ll be getting some red blood either today or tomorrow which should help out immensely with respect to my energy level.

When I arrived at the hospital yesterday, I needed to stop by the lab to get my blood drawn before going up to the ward for my chemo treatment. I’m one who will take the stairs unless I have a broken bone, so I climbed the flight of stairs from the parking lot to the ground level and then went up another flight to the first floor where the lab is.  Those two flights winded me like I’d just run a sprint. I’d also been getting a throbbing headache if I coughed.  When I mentioned it to the doctor, he said, “It’s just the anemia.” OK, thanks for sharing.  He pointed out on my lab reports that my hemoglobin was intentionally low as was my hematocrit, both indicators of my red blood count. By explanation, the red blood cells are not just those that give your blood the pretty red coloring, but they carry oxygen from your lungs to every part of your body.  If your red blood count is low, then you can do the math and see that you’d become winded pretty easily. My white blood count is now officially neutropenic again (really, really low – 0.2; normal range is 3.5 - 8.3), so my paranoia about being around other people is shared by everyone. I got some antibiotics and antivirals to be on the safe side, but am still feeling just fine aside from a bit tired…again, thanks to the anemia.

When I walked down to the pharmacy to pick up my prescriptions, a little flier was on the seat next to me and as if cued up by the universe, the topic was “Anemia: A Major Side Effect of Chemotherapy.” And unlike the leukemia, I have every symptom listed for anemia: extreme weakness and tiredness, loss in concentration, shortness of breath, rapid heartbeat, headache, dizziness, paleness, and difficulty sleeping.  Lovely, huh? At least I know what this is…and getting a transfusion of blood will take care of most of these problems in the space of a few hours.

Music of the day – “Breathe (2 a.m.)” by Anna Nalick

...you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table.
No one can find the rewind button, boys,
So cradle your head in your hands
And breathe, just breathe,
Oh breathe, just breathe

Be well, stay strong, and just breathe...much love to you all!

Todd 5.0 – Unplugged

My lovely, considerate, and (fill in the really nice adjective here) sister brought up some Easter leftovers for dinner this afternoon during her visit.  And while I’m deeply appreciative for the really good food here at the VA Hospital, this really hit the spot!  Some spiral cut ham, “funeral potatoes” (a Utah specialty akin to potatoes au gratin anywhere else in the world), and some carrot cake was mahvelous, dahling! She arrived just as my new hem/onc doctor was finishing up my third of four stab-me-in-the back (a.k.a. intrathecal) chemo procedures.  I was about to get plied with a second dose of happy juice, so she was in the unique position to interrogate me, but alas, she relented from the hard core techniques and we just had a great brother-sister conversation about having to replace underwear thanks to the side effects of the first round of chemo. I can tell you’re gaining all kinds of valuable information from this blog about topics you’d never imagine possible. I’m just full of surprises, and even more after a little chemical helper (and some Easter leftovers!).

So, as our conversation meandered from one profound topic to another, it finally turned to something of substance as to the why my life is on hold. I don’t know that we came to any kind of real conclusion, but the consensus was that I’m on Version 5.0. I can look back on my life as I’m sure you can yours and see some rather distinct stages where one chapter of life comes to a rather well-defined close and the page is turned to reveal what feels like a completely new life. Childhood really is just the foreword to the tome that is my life, but once I graduated from Annapolis and began my naval career, Todd, Version 1.0 was released. As I grew and changed, I remained the same base model, but the way I operated was different. Sometimes, that was because of the environment, sometimes it was because of a complete redesign of my ‘operating system.’

The treadmill of sorts that was the platform for Todd, Version 4.0 was has been retired and Todd, Version 5.0 is in now in development. Part of what I think is happening is akin to what a musical artist does when they create something called, unplugged where the art is stripped to its essence. I think that is what the end result of me being pulled off of the daily grind treadmill for leukemia treatment is – refining that person who I am.  Version 5.0 will still be me, but more so. Of course, anyone who knows anything about software knows there’s some beta testing involved and that means some gaffs, crashes, and errors, but in the end, you get a really good product.  I guess that’s my way of saying bear with me during the metamorphosis. I’ll be a quality product!

“Labels are for soup cans,” my friend Henry once told me and as much as I have tried to shun them, they somehow find me still. Some labels have great connotations and others, not so much, but for whatever reason, we seek to define ourselves by them. I’m hoping that Version 5.0 of me sheds the labels that the world would try to define me and rather reflect the part of me that lacks description, that is just me. Getting there, of course, means to reject my own image of what I think I should be, of the rat race standings, and cultural expectations. In a sense, it feels like I’m breaking free of the teenage years where peer pressure holds sway. The difference as we age, of course, is that the peer pressure turns into keepin’ up with the Joneses and having the best big boy toys. Yeah, I know, I play the game, too, but at some point, the effort to keep up appearances, the credit card debt, and the mind games just get to be too much. Simplicity, freedom, and authenticity just feel better…and it’s all far less stressful and much less expensive!

The rain outside and the chemo treatment made an out-of-doors walk impossible today, but I’m still looking out my window for an out-of-body experience to some place beyond the hospital.  Since the April showers began today, I’m looking forward to a beautiful display of May flowers and thankfully, my doctors conferred with each other and there’s a likelihood I may be able to convalesce at home rather than in this hospital room. It helps that I live only ten minutes away and that I’m pretty paranoid about my condition.  Being engaged with the doctors has paid off, so I hope that tomorrow’s blog entry will be made from home.

Today’s music is from Des’ree – Ya Gotta Be.

Ya gotta be
Ya gotta be bad
Ya gotta be bold
Ya gotta be wiser
Ya gotta be hard
Ya gotta be tough
Ya gotta be stronger
Ya gotta be cool
Ya gotta be calm
Ya gotta stay together
All I know, all I know is that love will save the day!

Be well, stay strong, and much love you all! :)

Patient, Heal Thyself

I’ve often been referred to as a renaissance man. A renaissance man is basically someone who has a lot of different talents and a broad base of knowledge.  For people who know me, the description fits me to a tee.  The military career has the effect on creating an entire force of renaissance men, especially in the officer corps. No doubt, the TV series McGuyver had to have been based on this concept. I may have been trained to operate and navigate a naval warship and to pilot aircraft as primary warfare specialties, but while I wasn’t in the pilothouse or in the cockpit, I had a never-ending list of tasks that only had a tangent to my specialized training in the air or on the bridge. But, of course, it’s never good enough to simply get a job done. We had the material inspections, the planned maintenance, the scheduling, the jump-through-the-hoop-for-the-admiral things, and then we just had our regular jobs. We had to be good at everything. We were trained to be the ultimate renaissance men.

One of the many things I’ve had to pick up and become proficient as of late is the area of medicine.  It’s not enough that I understand simple things like acetaminophen is Tylenol or the major components of blood chemistry. I’ve had to understand my own physiology and make sense of the many, many interdependences of what different medications have on my systems and why I should take them or why I should refuse them. I’m not a doctor, but I *have* to be smart enough to ask the right questions and propose a different course of action if I don’t agree with what I’m hearing. As a parent of a child with a congenital heart problem, I had to get up to speed on cardiology. Without doubt, hover parents have nothing on a parent with a sick child. I got to the point that I briefed the medical team as well as the interns during their rounds (that is what the attending physician told me). I knew every detail when it came to my son and while I never interfered, the doctors knew I was engaged…and they respected that involvement. And as a patient now, they demand it and I am happy to participate.

Participation in one’s own healing, I have come to see, isn’t optional. I’ve been working my way through Norman Cousins’s Anatomy of an Illness which was published in 1979. He worked with his physician in stepping outside the medical norms of the day and made laughter part of his therapy and found that it actually made a physiological impact. He posited that ten minutes of belly laughter was the equivalent of at least two hours of pain-free sleep for him. He and his doctor took data on his condition and found that laughter also directly affected inflammation as well. While I’m certainly not suggesting withdrawing from traditional western medical practices and take regular doses of slapstick, it’s clear from my own experience and that of many others that attitude is so critical…and that laughter truly is the best medicine. And that, dear readers, is but one of the reasons I keep placing such a strong emphasis on being optimistic and keeping me smiling if not outright laughing.

When I was admitted this morning for consolidation chemotherapy, I was delighted that my favorite people greeted me with hugs, smiles, and laughter. Despite coming back to a hospital for more toxic fun, the people that kept me smiling were the ones that were authentic, compassionate, and full of life outside their job.  Two of the med techs had even gone skydiving the day I left last week and have pictures to share. The nurse who got me settled in was already launching into jokes and before long, it felt like old home week rather than the Hotel California where I was about to get a needle inserted into my spinal cord. I’m not particularly excited about ingesting poison as a check to the leukemia, but I know I’m in a safe place as paradoxical as that may sound.

As much as I’d far rather be at home, I’m happy to be in a place where the people who work here not only are suited for their work, they are full of life and they enthusiastically share it. And realistically, doesn’t that describe the kind of people you really want to be around?  Who wouldn’t want to be around genuinely happy people who choose to live rather than exist? And here’s another one of those parallels where you don’t have to be in my hospital-issued traction socks to figure that one out.  You know the people around you who add to your life, who make you smile, who are the renaissance men (and women) who just seem to be able to do it all and enjoy putting you on the business end of their kindness. Seek these people out and be like them. You’ll find yourself helping others with gusto and an authentic smile and in so doing, you’ll find that you’re unwittingly helping yourself.

Be well, stay strong, much love to you all!

Precautions, Pre-release, and Presumption

Under normal circumstances, I would be concerned if the doctor shrugged his shoulders and said, “I don’t know,” but today when nary a one could isolate the reason for my fevers, I wasn’t dismayed. That’s because the rationale made sense. “We think it’s probably just your bone marrow re-starting.” Most leukemia patients are feverish as a result of one thing or another following the decimation of the immune system. A barrage of nasty sounding antibiotic, antiviral, anti-nausea, anti-fungal, anti-mold, and other broad spectrum anti-drugs are dispatched to fight off invaders in the immune system’s absence, so the actual reason for the fever is often hard to tell. Blood cultures are taken at the onset of the fever, but in my case, nothing grew. The inflammation in my intestines healed, and I still had nothing in the way of lesions, rashes, or other nastiness that the Infections Disease people could analyze. And to top it all off my neutrophil count was a whopping 894 today! Because 500 is the benchmark for discharge, the first three doctors I saw today were assuming was going home today.

But there’s more to this rodeo than just the neutrophil count. I got my first round of Methotextrate chemotherapy this afternoon intrathecally (i.e. directly into the spinal cord). It wasn’t nearly as bad as it sounded and I was given some happy juice which made the experience mercifully short and practically painless. If it gives everyone (myself included) the warm fuzzy to ensure the leukemia stays away from my cerebrospinal fluid and the brain, I’m on board with the inconvenience, believe me!

 

I also got a spin in the courtesy van over to the dental clinic where I was curtly told that I didn’t confirm the appointment. Um, yes, that’s correct because I didn’t make the appointment. But…we play the game because a dental consult is all that stands between me and my marrow transplant package being transmitted for approval to Washington, DC. I was looking forward to going and looking at the dentist saying with impunity, “No, I didn’t floss! They wouldn’t let me!” Nyah (emphasis, mine). So, I got to go back in the courtesy van back to the hospital, but at least I got to see the sunshine again. Spring Fever has officially arrived, can you tell?

It looks like a time line is starting to gel on the end game here.  The Induction Round of chemotherapy is normally 28 days, but I will be discharged tomorrow, nearly a week early (and the crowd roars). How nice it will be not to be peeing in a cup, not being tied to a pole, not being awakened so someone can take my vitals, take my blood, listen to the sounds of my guts, my lungs, me say, ‘ah,’ … and … I get to sleep in my own bed that doesn’t whir up and down and wheel through the halls! Oh, and I get to eat when, what, and if I want. Oh, you do all that stuff already? Lucky stiff! Next thing you tell me you can pretty much wear what you want.

 

So, I will be back in my own digs for the week.  From this point on, the search for a suitable and willing bone marrow donor is in earnest.  Before I go to Seattle to make this happen, I will need another four days of ‘consolidation’ chemotherapy, which is inpatient here locally.  That could happen as early as next Monday. Thankfully, the consolidation round isn’t as arduous as the induction is, so my hematologist suggested that at the end of the four days, provided everything is as smooth as this round, I could be turned right around for more home time.  It’s not party time yet as I’ll have to mask up once I leave my condo and won’t be in crowded places any time soon. But hey, I can get out. I could take a drive or take a walk around the block!

 

Once the consolidation round is done and I’ve finished my back-breakers, it’s a waiting game for my donor. It could happen quickly or it might take a month or two. I mentioned last night that many American matches originate from Germany, so I figure that once that 20-something über-strong, blond and handsome German donor has bravely stepped up to the plate, it’s time to play ball. I should point out that even the fraüs in Deutschland are pretty über-strong, so I can’t lose! Nein! The ball game is in Seattle and takes a total of 114 days from that point.

 

This really is an endurance event. I feel very fortunate to have some good genetics that have kept me these 50 years, but I feel very good, too, that I take the time as part of my daily routine to exercise and eat well.  That I’m leaving the hospital a week early is testament to the fact that good physical condition plays a huge part in my recovery.  You don’t need to be a gym rat or some fitness fanatic. If you’re able to commit to taking good care of yourself with regular strenuous exercise several times a week and make some the obvious changes in your diet, you will be far ahead of most people and it could quite literally be the difference between surviving a round of chemotherapy or not – I didn’t make that up, it’s what doctors have told me about why I’m doing so well. My sport of choice is long-distance cycling because I enjoy it, so find an activity you enjoy and then make one small change to your diet and see what a difference it makes. What can that hurt?  Do what you like and like what you eat (just don’t overdo it). How hard is that?

OK…I’m looking forward to my last night in this room. It’s been real.

 

Be well, stay strong, much love to you all!