Bike Roller

I rode my bike today, but did not groom my hair with it.

This was my first ride since, I'm guessing, early October* which was about when the nadirs of the second phase of chemo really made my platelet so low that I risked serious bruising from the bumps of just lifting my bike (which did happen as I heaved the folding bike into the back of the car) and uncontrolled bleeding if I fell or got cut (which did not happen, thank goodness, but could have because my platelets had practically vanished overnight, unbeknownst to me).

Today's ride was 3 miles of mostly flat, mostly calm local streets and parkway.

I wore my skullcap under my bike helmet in lieu of hair.

When I got home, I had a real "post exercise" feeling. Slightly dizzy, slightly tingly.  If I hadn't known what caused it I might have been worried.  As it was, I felt great.

Now, two hours later, my legs have that initial "you over did it" kind of numbness.  I expect tomorrow I'll be sore (and it will be rainy), but I hope to be back on the bike soon and finding more ways to feel that exerted.


*There may have been a furtive ride to the gym on a non-nadir day in October or even one in November, but I didn't write it down.

Lint Roller

I still don't know what to do with my hairdo, which amounts to an extremly sparse 1" crew cut.

My family (mostly the daughters) insists that I look cute and won't let me shave it all off.  That's probably the right decision given that when it does grow back, it would have to pass again through a series of "awkward fuzz" lengths.

With hair too sparse to comb or brush, for now, the only grooming tool that seems to make any difference is a lint roller.

The lint roller gently collects any hair that was going to fall out, while also delivering a nice scalp massage and a little bit of fluffing of the hair that remains. 

Restrictions Lifted

I had a Dr.'s visit and tests yesterday.  The conclusion was that many of my lifestyle restrictions were lifted, as expected, for "Day 30" (today, which is 30 days from my stem cell infusion).

Rules relaxed as of yesterday:

• Almost all bacteria rules have been relaxed. I can now eat (clean) raw vegetables and soft-yolk eggs, and restaurant foods. We celebrated at Wendy's, which I'm today regretting for gut-overload reasons. Sushi, however, remains off-limits.
• The platelet rules have also been relaxed: I will be permitted to exercise and ride my bike (but still not in traffic...that's a "mental focus" restriction).  

Not Relaxed:

• Most of the fungus rules (no unpasturized or soft cheeses, no gardening) are still in force. "Can I go in the basement yet?" is on the list of questions I'll submit by e-mail.
• The virus rules remain for the rest of flu season, mostly about avoiding sick people, because they remain deathly afraid of Flu and Norovirus, and on hair trigger to start me and Mrs Blogger on Tamiflu if anyone in the family is even a little bit glassy-eyed or achy.

Lungs:

The centerpiece of the day was the lung testing (Pulmonary Function Tests / PFT) were I sit in a glass booth and breathe into a snorkle mouthpiece with a big, strong nose clip on my big strong nose. I did well--essentially matching the baseline set by the same tests just after Christmas and before my transplant 

We were checking for signs of lung inflammation, which about 30% of patients develop at this stage. I'm on preventative antibiotics to keep any inflammation (pneumonitis) from progressing to pneumonia. Some patients detect the inflammation in themselves with shortness of breath. The idea is that the PFT can detect it even if early or subtle.  Had I had function loss, they'd have put me on a steriod.

But, as noted, it was all good, across all 3 tests: Lung Volume (super-inhale w/complete exhale), Oxygen Capacity (inhale-and-hold a Carbon Monoxide tracer,* analogizing its uptake to Oxygen uptake), and Lung Pressure (a puff-suck pressure test that somehow elaborates the Volume test with a measure of pressure).

*Yes, the Carbon Monoxide that, if it replaced too much Oxygen, would be fatal. In this case they add just a teensy amount to normal air, have me inhale and hold, and they measure how much less CO is in the first exhale--versus what I inhaled-- as a way of measuring the efficiency-absorbancy of my blood.

Immune System:

The blood tests showed that the Absolute Neutrophil Count had fallen to barely above 1000 (the threshold for "going home") but my White Blood Count had held firm at a good-enough 2.9 (4.5 is the low end of normal-people normal).  

You can think of 2.9 as a restatement of a count of 2900 white blood cells of all types. A week ago my WBC of 2.9 was based on 1500 ANCs and only 1400 of other cell types (like lymph cells).  This week's 2.9 means that I have 1000 ANCs and 1900 of the other cell types....so rather than worry that ANCs fell, they liked to see my lymph cells coming back

Life is pretty mellow as a shut in, so there hasn't been much eventful.  But popular points of recovery that need a "week 4" statement might include:

Exercise: Officially my regimen is 2 walks per day (but somehow am only scheduling one). Shoveling snow (that was going to melt anyway) has proven very engaging, though. My shoveling endurance is vastly improved since the early days. In my first days home I had to take tiny shovelsful and could only heave them a foot--nibbling, not shoveling.  Whereas on Sunday I felt near normal shoveling ~4" of heavy snow.

Hair: Continues to fall out; Wearing a ballcap now (Concord New London Style Pizza is my favorite team), mostly because my lung-protective antibiotic makes me sun-sensitive and they want me covered up.  Were it entirely up to me, I would wear a fleecy neckwarmer as a donut-shaped hat (open to the sky in the middle). Between the "no sun" medical requirement and the fashion-derision of my family, I adopted the ballcap.

Gut: Between 2 Pepcids/day and 1/day antibiotic, my gut remains off-kilter. Everything within my ribcage and gut still feels wooden or maybe like a sandbag. It isn't pain or even particularly annoying.  It is likely that the Vili are not there, and they have a lot of jobs in digesting, absorbing, and moving food.

Contagions: So far, so good.  I wore my mask and hat to a neighborhood open house (as one does).

Medical Tests: Tomorrow: Special lung test (inhaling through a metered hose...testing to

Cleanliness: The family has done a good-enough job to keep me from getting sick (and we've done a good job of keeping sick people two or more degrees away).

Vocational Training: I'm working on my Python, R, (data analytics) and Salesforce.com, and old-fas

Had an 8am appointment today to do a CBC (Complete Blood Count) because they did not like my results from Tuesday.

 Happily my ANC recovered to 1290 (from Tuesday's 910...recall I needed 1000 for 2 days to be released)

So we are home in time to transport Bloggette 2 from Community College to Ballet Conservatory (she's a Junior in High School and carpools with Bloggette 1, a HS Senior)

It is getting tedious as each day of taking it easy (lying in front of the Olympics for today) seems to leave me equally tired. Time to start sprinkling my daysways with walks or work, if I can.

3.5 hours getting Mrs Blogger caught up on PBS' Victoria Season 2 (I watched *a lot*during pre-transplant chemo)

3.5 minutes blogging: because I can't technically be left alone I rode along on about 2 hours of kid-ferrying, but did just stay at home while the family went to Saturday Mass.

240 minutes napping, 24 seconds blogging

Day 16 (since transplant) Day 3 at home

I am recuperating.  Not sick, but not fully well.  The rules require me to wear a mask for anyone not "family" and to always have somebody handy to drive me to the hospital.  Best rule: I must not do any cleaning myself.

I will next go to the BIDMC clinic next Tuesday--they liked what they saw at my first post-release check-up yesterday.

Yesterday, I was

• well hydrated with minerals in balance (IV fluids would have been very standard but I'm drinking 2 liters or more per day on my own)
• Had strong white counts (above "post transplant" and nearly "just below normal") in the range of ANC = 3000 and WBC = 4-something (but not 4.5
• No fevers so far
• Liver numbers still elevated (worth noting & worrying but not worth intervening)

They didn't like that my "innards" had initially resumed this unique blend of 

• kinda like heartburn, but not really
• kinda nausea, but not really
• a bit of loss of appetite
• mild gastro distress

Basically, it is a feeling that is like a slighly-blended/changed version of any of these problems I've had from "usual" problems in the past 52 years.

I am experiencing my gut lining going wonky--sloughing cells; losing hairs, delicate structures and local function; dying and restoring at different places at different times. So it feels kind of like any of the gut problems you or I have ever had, except this time, it is the gut itself, and not  the germs or acid or other stuff passing through that's the cause. 

Mostly, though the Dr's unhappiness was that because the RNs had been giving me "as needed" meds for my heartburn-nausea-unease-whatever, the meds never officially got recorded as a daily problem with a daily fix.

So now I'm on low dose Pepcid 2x daily, because "we don't want you having any symptoms that are too serious to be medicated away, and the only way to know that is to try to medicate them all away" Fair enough.  And a good thing: I originally thought that the burning pain when inhaling was lung trouble or trouble breathing*  Then I realized that my whole esophagus hurt and inhaling was just exacerbating my "greater heartburn" and better, that Maalox gave quick relief and Pepcid kept it away the next morning.

Also, I'm on Lactaid before eating dairy.  Apparently the cells in the lining of one's intestines that "do milk" are among the last to come back, which is a shame since cold foods (like milk-in-cereal) taste normal and are very soothing.

Also, my taste buds are clearly off.  Many foods--including some favorites--taste like a bad TV picture used to look (particularly when the kids had turned "tint" to Red or Green)

Happy note: Everyone at home is doing a great job of keeping both bathrooms sterile, too.  Small rituals plus hand washing go a long way.

* I am literally scheduled to have trouble breathing on Day 21 or later. Pencil it in for Monday.  A large share of post-transplant patients develop a pneumonitis at 3 weeks. The cause is unknonwn (when regular folks get it, it is usually viral) but they give antibiotics to prevent the inflammation from permitting real pnumonia to develop in me.

Home Again!

It is a good day!  After many exit interview sessions (doctors, nutritionist, RN/Prescriptions) and having my line tugged out (a very interesting experience), we arrived home at 3pm--in time to drive Bloggette Three to ballet and have a good chat with #4 on the way home (I wasn't driving).

After a nice nap, it is time for dinner!

Hairdo: Who Knew?

Off the top of my head, I'd say I've lost 90% of my hair:

This morning my beard started falling out:

And as we come up on the 3 weeks mark, they have subtle ways of helping me develop a sense of belonging:

Qualified to go home

My numbers qualify me to go home! Yaay!

It is interesting, though to see how the neupogen was "juicing" my numbers.  Below are Saturday and now Sunday numbers on the key blood measures, and you'll see a number of things.

Saturday | Sunday

ANC = 2990 | 2130 (vs 1000 needed to go home)

WBC = 3.69 | 3.0 (vs 4.5 needed to rate low-end-of-normal)

HGB = 8.9 | 8.9 ( stable on its own to grow farther from the transfusion limit of 7)

PLT = 38 | 34 ( having a good cushion to grow farther from the transfusion limit of 10)

ANC and WBC have retreated because they were the most-boosted by the neupogen (white-blood-boosting) injections that I'd been getting from roughly Day 6 to Day 11.  The ANC and WBC are expected to shrink back (as the stimulus is withdrawn) before showing that I'm building up naturally.

Optimistic: Monday going home?

ANC = 2990 (vs 1000 needed to go home)

WBC = 3.69 (vs 4.5 needed to rate low-end-of-normal)

HGB = 8.9 (rising/stable on its own to grow farther from the transfusion limit of 7)

PLT = 38 (rising/stable on its own to grow farther from the transfusion limit of 10)\

The numbers above are so good that they are:

1. suspending my neupogen shots (lest I "overshoot" my targets for white cells)
2. Looking for "exit interview" times on Monday

Tricky part: #2, above, of looking for exit interview times is not quite a promise of "you will go home on Monday" but more like a "if all continues to go as well as it has, we want to be prepared to send you home on Monday."

The exit process will probably cover:

• Is the house clean enough? Final dust bunny eradication is scheduled for today
• do I remember how to clean my central venous line's three heads (yes)
• do I have central venous line supplies at home (yes, about 5 or 6 days' worth)
• do I know what the food rules are (probably: no raw stuff, for a while)
• do I know the larger calendar of things to avoid and things to do (I'm educable)

Medical: Good News: Engraftment

This is a good news post that relies on numbers from my overnight tests.

White Blood Count / Absolulte Neutrophil Count

Since it involves diagnosis/prognosis, there's a case that I should wait to hear from a Practitioner (there's always a Nurse Practitioner or Physician's Assistant on duty), but this is very good news copied from my lab results where the numbers that we've been waiting for are at last here.

As far as "did the transplant work" the answer appears to be "yes" (I will let the doctor officially declare that these numbers mean "engraftment" (that the transplant has "taken"))

1) Yesterday, my Absolute Neutrophil Count (ANC) was Zero (0), today it is 726.
To be released for care at home, I have to sustain ANC at 1000 or more for 2 days

2) That ANC went all the way up to 726 can only be explained by me making them. That means my stem cells have grafted themselves back into my marrow, which is another way of saying engraftment has occurred, or the transplant worked.

3) It is important that I make my own neutrophils, because, as Wikipedia says, Neutrophils are

...the most abundant white blood cell, constituting 60-70% of the circulating leukocytes. They defend against bacterial or fungal infection. They are usually first responders to microbial infection; their activity and death in large numbers form pus

4) White Blood Count, which we've been watching bounce around at 0.1 and less than 0.1, is now 1.1 (recall that normal is 4.5 to 11).  I'm not sure on the math, but it seems like given an overall White Blood Count of 1.1, we'd say that .726 are Neutrophils and the other .374 are the other white blood cells, all made by me. Something like that (I'm not entirely sure the units work that way).

5) We're past the nadir on all blood components, with Platelets at 11 (vs transfuse at 10 or below), and HGB is 8.3 (vs transfuse at 7 or below)


Active Follicle Count

Ok, compared to the news above, which says I will soon return to a normal life, the hair thing (at right) is pretty trivial news, except that it always appears in headlines. (pun intended)

Recall that the average full head of hair comprises 100,000 follicles.  I bet I'm down to 50,000 active.  I think I'm going to ask for the clippers back again today to buzz it all to a uniform 1".

Right now my head looks like the surface of the sun, bristling with plasma streaming out into space, and roiling with great, looping flares, some that shoot out, and some forming ringlets that crash back into the surface.

Today, nothing happened.

Waiting out the Nadir

They tell me I'm doing great. Apparently I'm a really good at waiting.

Yesterday (Wednesday) I ultimately got 2 units of red blood, and one bag of platelets.

The nice thing for today (Thursday) is that I don't need any more transfusions, with both red and platelet counts above their respective thresholds.

My white cells, though, remain at essentially zero.

I had a bouncy little fever-chills cycle yesterday, with one reading as high as 100.3 (before reading 99.6 a few moments later).  Had it gone to 100.4 that would have triggered more serious antibiotics and Hospital rules require stopping the transfusions if they elicit a fever above 100.4.

In fact, they gave me two Tylenols to keep the fever below 100.4. which seemed like cheating to me. But as noted, they are threading their way through a lot of scenarios and the idea, apparently, is that a "real" fever would not have been deterred by the Tylenol.