Medical: "Id Reaction" to Poison Ivy

I have itchy red dots on my arms, legs, and along my spine. Here are your clues:

1. They appeared around August 23, several days after I got a 3-inch "stripe" of poison ivy just above my left ankle (around August 20), and shortly after a round of crazy antibiotics for my Pnuemonia
2. I never had a fever from this, so unlikely to be any of the usual "spots" viral diseases
3. They are symmetrical, generally appearing the same on the left and right sides of my body, even though they migrate up/down  to outer  and inner parts of my limbs. This suggests "an inside job" as the dermatologist puts it.
4. They don't look like lymph disease lesions, and aren't in the groin (where lymph stuff likes to go)
5. They don't look like Pityriasis Rosea (not red enough)
6. They don't seem to be a reaction to Bactrim or any of my other medications (they should have emerged closer to the time I started taking them
7. I've never had eczema or a rash like this (that I can recall)
8. The rash migrates: back of knee to front of knee to front of shin to back of shin at about the rate of moving to "the new place" every 2 days.  Same for elbow crease to elbow point to forearm inside to forearm outside.
9. The rash on my spine just sits there (as Pityriasis Rosea might, but not as colorfu)

I saw a Dermatoligist today.  His conclusion: My immune system is out of balance from the Poison Ivy.  He reasons:

1. Contact Dermatitis (Poison Whatever contact) can "go generalized" 
2. It is particularly likely to go generalized if it starts on the lower extremities (hard to get more extreme than the top of my ankle)
3. For an immune-compromized guy like me, it is very possible that even though I might be a little bit short of fighter cells, they can get into an auto-immune feedback loop and just  "keep fighting" if I happen to have a shortage of the immune "control" cells that might ordinarily calm things down
4. This generalized reaction is called an Id Reaction.

Were I not immune compromised, the solution would be oral steroids to force a calm-down and break the cycle.  But oral steroids can suppress the immune system, generally.

So the solution is a topical steroid, twice a day: covering every red dot with a white dot of cream (or rub on a concentrated area of dots).  Topical steroids do not suppress the general immune system, but have been shown to stop the runaway fighter cells.

Medical: Pneumonia Last week, Good This Week

For the record (I should have been blogging this as I went)

In early August, I developed a post-nasal drip, with a little tickle at bedtime and a roaring sore throat upon awakening (that quickly dissipated).

But on August 10th, after swimming 500m at the local 50m pool, I came home, felt faint, and had a fever of 102.1

So I called the BI, and they had me come to the emergency room.  X-rays, bacterial culture, viral culture. The Works.  Yes, my lungs were cloudy and I was admitted from Aug 10 to 14.

I had a follow up blood-draw on the 16th (which showed low blood counts and high liver stress).

I had a follow up visit to the BI clinic yesterday, mostly good, but my white counts were too low to do my "2 month" Rituxan (which both relies on the immune system and a can lower blood counts, so we'll try again next week)

First Swim & Dental Visit Next Week

I've never been so excited to visit the dentist in all my life.

I've been cleared to have my teeth cleaned, something I usually forget to do, but in this case it was a highly speculative appointment set back in January.  I'd always thought I'd have to cancel it--dental work has a lot of opportunity for infection if you're immuno-compromised, and they generally say "not in the first year"

Also, I was cleared to swim.  This happened before I went to the beach, actually, and forgot to blog about it. There were two precautions: 1) a belly-shot of neupogen (boosting stem cell production, and ultimately the whole white-cell family) and 2) no bare feet on deck

Basically, they worry about cuts in the mouth and cuts on the feet as being in places where there are a lot of bacteria, and slightly different ways the body heals things.

Now its "Maintenance", bi-monthly, til 2020

Once again, my CT shows clear of cancer.  This was actually not a regularly-scheduled one, though, it was because as I begin my "maintenance" phase, I had elevated liver numbers--my liver was clear, too (recall that you can't "PET" a liver because it metabolizes sugar right alongside cancer).

We don't have any good theories as to why the liver numbers were elevated, but it is true that they went down when I stopped taking my Chlorella and Spirulina (two superfoods that are good for your immune system).  The nice people at Beth Israel knocked me off them because they were *too good* for my immune system (which they were trying to wipe out at the time).  Now they've knocked me off them because they are suspected as being bad for my liver.

But here we go on "maintenance" immunotherapy--targeted to trick my body into thinking that any mutant lymph cells are a disease I've had before.  Rituxan every 2 months for the next 24 months.

Next up, August back at Harvard Vanguard in the Fenway.  Its an easier place to go now that the super-specialized care at Beth Israel is no longer needed. HV is perfectly capable of dosing me with a big bag of stuff.  And they have better WiFi

October, I will, however, go back to BI for a 4 month check in.

On a personal note, I'm crazy-busy with Data Science projects.  If you know anyone with a big pile of data that it's nobody's job to look at, let me know.

I'm also completely comfortable on my bike again, climbing hills and doing "Cambridge commute" type rides in the 6-mile, 35-minute range.

That Masked Man

I did some forbidden yard work--Mother's Day Mulching--but, in my defense, I was (1) careful to wear a mask to limit any dust (fungal spores) that I might have inhaled and (2) we kept the mulch pile cool and dry to minimize any fungus. I hope that worked!

Back on Antivirals and Antibiotic

We tried to stop my antivirals after my late-April appointment, but  by 5 days after stopping (last Friday ish?) I began to feel first an itching and then point-tingling, particularly around my mouth, but also at various points almost anywhere on my body.

The net is that it was probably the early stages of Shingles, which got as far as red, raised spots, maybe 4mm in diameter in some places.  So now I'm on Valcyclovir to stop it and then will go back to Acyclovir to keep it away--probably until Jan of 2019.  All that is a bit disappointing since my gut seemed to have been doing better during the break.  Oh well.

I'm told a full blown Shingles outbreak is something to be avoided.

They also didn't like my CD-4 count (a white blood cell).  They wanted 200 count and I was an 80, so I'm back on my ongoing Antibiotic too.

Results; no cancer was discerned in the CT Scan images.

I won't be released to "maintenance" treatment, however, until I have no lingering side effects, which have been identified as:

Impared executive function (impared learning and focus), which we will address with 30 minutes of uninterrupted book-reading per day followed by writing a summary of exactly 3 sentences. I managed 27 minutes of solid reading before peeking at the timer. (Thanks Tim M. for Ron Chernow's Grant biography!)

Gastro distress. I will stop my antiviral to see if it has been an irritant. I will cut my milk consumption and focus on lactaid and Kefir when I do. Also will do pre-biotic soluble fiber (oats, citrucel) followed by probiotic fermented foods (sauerkraut, kimchi, kefir).

Chemo is generally hard on the GI tract, and the effects can especially linger in the fine structures of the intestines (and the particular digestive processes that happen there).

IGR and IRR are things (enzymes?) That are produced by gut lymphocytes that keep down bad bacteria in the gut. The problem can be that the bad bacteria get entrenched in the interval where the BEAM chemo has wiped out all lymph cells. Sometimes the good bacteria naturally succeed in recolonizing, but sometimes a special (non absorbable) antibiotic is used to knock out the bad gut colonies to clear a spot for good recolonizing.

Ear canal pain. This may be scar tissue in my right neck (where the lymphoma began and was most present) messing up my right eustachian tube. My right ear hurt like crazy on my recent airline flight--recalling the pain that all kids risk when flying--and it still hurts occasionally if touched wrong. We will begin with heat treatment---funny because that's exactly the treatment I tried for a month a year ago hoping my cancer was just a matter of drainage!

Am sipping a big jug of salty iodine contrast in advance of my CT Scan. This scan's intent is to show remission.

Out the door at 6:58am I drove myself and Waze worked the backstreets hard, resulting in 30 minutes spot-to-spot (it is 23 minutes off peak and 45 at rush hour)

I got a little bit emotional in the parking garage, feeling a wave of memories--arrivals and departures before so many "big" treatments.

The 4th Floor of the Shapiro Clinical building is Radiology and I think I have been here for 1 of everything they offer except a mammogram: PET, MRI and CT (ok I think they offer sonograms, but mine were down in the Emergency Department).

This is like a 1 year anniversary of my journey's start. You may recall that when, in late May 2017, my PCP asked "when did you first notice you lump?" I picked the best disaster date I could think of, April 20, 2017, as the day I noticed my neck lump.

April 20 is the shared anniversary of Hitler's birthday, Columbine, and Deepwater Horizon, and the Ides of March had seemed too long to have been between noticing the lump and finding a doctor. The truth probably lies between the two. April 15 could have been a good choice too.

(I am pretty sure I learned Hitler's birthday from 'Hogan's Heroes." Thanks TV!)

It has been strange coming to BIDMC without an overcoat, too, since my main visits ran October-January.

If everything is good today, I will find out tomorrow, and expect to be told what happens next. Six months ago the idea was I would go back to the more laid back Harvard Vanguard ocology outpatient office in Fenway, probably for maintenance immunotherapy (periodic Rituxan). 

More Tomorrow!

I wrote this to a friend and thought I'd copy it here:

At this point the main "tell" is just that my head hair is 1/4" long, revealing skull lumps that a phrenologist would go nuts over--pretty sure I've got the High Criminality lump. 

I'm down to minor immune precautions (a daily antiviral + antibiotic, plus generally avoiding fungus (no gardening) since they don't really have good antifungal tools compared to the whole world of possible funguses--they can treat thrush and that's about it).  I'll get my "infant" immunization shots next Jan/Feb 

They cleared me to travel by air and I hope to get pool & ocean priviledges by June, though my legs are strangely hairless except--double-strangely--the side of my knees. 

The worst part is the antibiotic which makes my gut work erratically and requires that I not get sun (so, yeah, at the beach, between no sun and no hair, I'll look like a naked mole rat or something 

April 22/23 is the next scan (Monday) and clinic visit (Tuesday) and then I'll probably be moved from the care of Beth Israel back to my neighborhood Harvard Vanguard.

Basically Done

My next appointment isn't for a month from now: April 23 for a CT Scan (we hope confirming the cancer is gone / stayed gone) and April 24 to get the results.

I'm still on Acyclovir to ward off Chicken Pox, Shingles, and Herpes, and when they found out that my brother's children were getting Chicken Pox the old fashioned way, they upped my dose to 3 pills a day for my visit (to my Mom, who lives nearby) and for the 2 weeks that follow (the incubation period for CP).  I had to only wave to their family, and made my brother wear a mask (and me too) when he visited my Mom.

I'm also still on an antibiotic in case I have lung troubles. I hope to stop that soon--or at least in April (technically, there's no connection between my lung-susceptibility and whether the cancer's stayed away, but it seems like a good time to ask).

10am to 3pm at Beth Israel

It turned out to be no big deal, but it still took from 10am to 3pm to establish that a sudden, urgent cough I developed was probably viral but not the Flu.

I woke at about 5am with a cough and a feeling I couldn't breathe.  My best guess now is that a post-nasal drip had fed a pool of mucus, which, in turn, cut off my breathing in a "sleep apnea" sort of way.  It had also made my throat sore from the bottom of my nose to the upper reaches of my lungs.  Even after a good cough or two it felt hard to breathe--probably the worst "sore lungs" feeling I've had so far, and I know we're on the lookout  for lung ailments.

I called the on-duty doctor and, after reporting no fever, no chills, no aches, nor anything else beyond a cough that was way more powerful than it was productive, he recommeded honey/lemon/tea.

But then the outpatient team came on duty at about 8am, and it turned into a request to come in, get a blood test, nasal swab, and chest x-ray, starting at a 10am appointment.  I drove myself in (for the first time, maybe ever)

While at the hospital, my temperature crept upwards, at first just 99.2. Some of it might have been that I was wearing a mask (which can warm the mouth).  So they couldn't take my temp until I'd chilled, mask off, in a private room for at least 5 minutes.  It kept inching upwards: 99.9, then 100.something, then, tested again with a different thermometer, it was still 99 something.

A nose swab is basically the longest, skinniest Q-tip you can imagine, inserted up your nose for 10 seconds until the urge to sneeze is unbearable.  And then they do it on the other nostrile.

Then it was off for two chest x-rays, just to make sure nothing lurked at the bottom of my lungs (they'd sounded fine via stethescope), and then a kind of long wait for the viral swab and the x-rays to come back. In the end, everything was negative, which doctors seem to be alarmed by (since it means they don't know the cause)

So they sent me home with a 5-day Tamiflu (Oseltamivir Phosphate) prescription, which disrupts the life cycle of Flu A and Flu B.  And I fell into a really long nap (which I must have needed)

A day later, I can still erupt into a violent, semi-productive cough, but mostly my waking hours are symptom free (last night was a big "post nasal drip" night again).

Buz Cut & Bike Ride

I finally shaved off whatever was left of my old hair on Saturday night, using the buzz-cutter I bought at Marshalls to get everything down to 1/8"  Please tell me I look like Captain Picard rather than Dr. Evil.

Today I biked out to Bedford on the Minuteman Trail (a converted railroad).  About 2 hours, about 20 miles, so about 10 miles an hour. It was also good to listen to 2hours of podcasts along the way

I also put my down payment on an evening course in Data Science that will run Tue/Thu evenings from March 20th to May 24th.

Medical: Counts Improving

At my appointment today, my blood platelets were fully in the normal range, and my white cells, at 3.9, were just a tiny bit below normal (which is either 4.0 or 4.5).  My red cells were still below normal, but had also improved since last time.

They also confirmed that I can stop taking my twice a day Pepcid (I'd missed a dose, noticed no heart burn and minimal nausea, and so had skipped all since).  That's also good because we'd like my normal stomach acid to come back--as long as the heart burn stays away (which it has)-- and help me digest better and kill food bacteria.

We're also trying to repopulate my gut bacteria.  Apparently my pneumonia-prevention antibiotic will have minimal effect on my gut, and so now's a good time to add probiotics (cultured/fermented foods) and prebiotics (soluable fiber) to my diet.

Yesterday (Saturday) afforded a chance to press further up the under-construction TriCommunities Greenway path, for about a 10-mile round trip in about 1h12m .

Call it  10mi/1.2hr = 8 mi/hr average, which includes things like dismounting at pedestrian crossings and walking alongside flooded sections where the Aberjona River water level was above the path's level.

For comparison, I used to do my on-street commute of 5.5mi in 30 minutes, averaging 11mi/hr including stop lights

For locals: all of the off-street asphalt for the path has been laid, but it lacks seating or bike racks (there are concrete/brick pads but not furnishings), it lacks paint and signage (where it runs on-street), and it lacks final dirt/drainage (though that would not have saved the under-water riverside sections, which we hope will only flood after nor'easters).  A large earth mover blocked the path where it leads to the former railroad tunnel under Interstate 93 (which is going to be very cool).

7 (Flat) Miles by Bike

Yesterday I biked 7 flat* miles. About 3.3 miles "out," about .4 miles exploring,** and about 3.3 miles home.

Today we have a proper nor'easter, so keeping warm and dry will be my primary effort.

* You know it is a gentle climb because it mostly follows the original route of the Middlesex Canal, which is now the Mystic Valley Parkway.

** Exploring being a euphemism for "lost," or at least not being able to figure out where the under-construction Tri-Community Bikeway was supposed to be, the issue being that they've laid all the off-street asphalt but have not actually opened it, nor have they painted the on-street connections.  I lost the path when it dumped me onto regular streets

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.

Red Blooded American

Today's morning transfusion is of red blood. My count had at last dropped below 7, triggering an official judgment of "too anemic" and the decision to give me red blood.

The blood is "irradiated" (to kill any germs or live alien cells) and it has been "leukoreduced" (had the donor's immune cells removed as much as possible).

This fits with the medical alert bracelet that I ordered (cheap-and-slow delivery for Feb 6th when I am discharged)

Auto BMT 2018
Transfuse Leukoreduced,
Irradiated Blood
Products Only


If you ever wondered what kind of messages get written on medical alert bracelets, it turns out to be boring stuff like mine.

And interestingly, I will be getting more platelets later today. Based on yesterday's allergic reaction they are medicating me in advance with Tylenol, Benadryl, Pepcid, Allegra and Claritin.

Hair Trigger

7 Feldberg has its own Wahl electric hair trmmer, and we used it to buzz me to a uniform-ish 1" of hair on the sides and no more than 2" on top.

The hair is coming out pretty rapidly right now. While I still have lots of hair, for the first time you can see skin from the side (see below) and not just the top-back (which has long been skimpy).

There was a minor scare this morning as I had an allergic reaction to today's platelets.

I'd had only a 9 platelet level last night, so we started a bag of platelets at 5am.

After it was all in, my back started itching. I called the nurse and she observed hives, and gave me Benedryl through my port. That helped some but then came shortness of breath and new hives on my neck.

This attracts the attention of that flock of caregivers that Chemo Birders would know as the Great Blue Commotion.

Native to scrub habitats, the Great Blue moves fast, administering 50 units of hydrocortisone and calling for an in-room chest x-ray from this beauty, which I think is an ostrich of some sort:

WBC = < 0.1
HGB = 7.3
PLT = 7 (transfused 6am Monday; new count in process)

Having received a bag of platelets already today, we are expecting a new Platelets number above the 10 threshold, and perhaps of about 14 from the complete blood count CBC that was taken at the end of the transfusion.

Update: My new platelet count (after this moring's transfusion, described above) was 12, about the doubling thatt we expected.  It is funny to think that the bag they transfused from had about as many platelets as my whole body had had.

WBC = < 0.1
HGB = 7.5
PLT = 21

There will not be any transfusions today. If things continue on Trend however I will probably need red blood tomorrow when hemoglobin will likely be below 7.

Apparently the lowest possible number that they will give you for white blood count is "less than .1"

Medical: Where I'm at: Nadir vs Reboot

Let's look again at this blood-lymph family tree:

Right now, inside you, there's a constantly-renewing stream of all the cells on this family tree. The cells on the right have specific functions and specific life spans, but generally the cells on the right are replaced every week or two by new cells made in the marrow and migrating out into the blood and lymph systems. The whole process in a normal person is driven by the fast division of the stem cells at the left, and their migration out to replace dying cells in the right column.

At some point in early 2017, the  B cells that worked as my Lymph's Mantle Cells went rogue, and, instead of dying normally and waiting to be replaced by cells migrating out of my marrow, started reproducing themselves in situ in my neck and colon. My Mantle Cell Lymphoma was the result of the fast division of the B Cells at lower right.

My old system had two types of fast dividing cells, on both left and right, when it should have only had fast dividing cells on the left.

Right now, I have two overlapping blood-lymph families living inside me.

• Old System, of which only the non-cancerous "rightmost" remain
• Reboot System of which only the presumed-cancer-free "leftmost" have been spawned yet

The purpose of the chemo last week was to kill off the very last cancerous B-Cells of the Old System but as a side-effect, ended up killing off all the "fast dividing" portions of my marrow (the left 3 columns).  So, as far as the Old System goes:

• my right-column B-Cell cancer is dead by design
• my left-columns progenitor cells were killed as a side effect
• my right-column siblings of my cancer will soon die of old age and not be replaced

My current-and-upcoming nadir will happen because the last of the old system's cells will die of old age before they have a chance to be replaced by the new system. 

Did that make sense?

My nadir will end when the Reboot cells have gotten numerous enough to repopulate my marrow and mature enough to be right-column cells (and start apprearing in my bloodstream).

Medical Arrangements

If Edible Arrangements can be a thing, I'm thinking Medical Arrangements may be next, such as this handsome bouquet of three white salines and a spray of spring green toothettes:

My blood counts have, as expected, dropped again.  I think I'll start posting them.

WBC = White Blood Count, where 4.5 to 11 is normal
HGB = Hemoglobin, where 14 to 18 is normal
Pltlt = Platelets, where 150 to 450 is normal

Every night at about 10pm, a Complete Blood Count is drawn (an RN pulls a test-tube's worth out of my port).  The results are in by 2am and are communicated to me when I wake up, and then determine my care for the rest of that day.

Thursday Night (determining care for Friday)
WBC = 0.4
HGB = 8.0
Pltlts = 70

Once Platelets were under 100 they stopped administering the anti-clotting shot (that had been daily since my first day).  With WBC that low, I was officially "neutropenic" and they officially got more vigilent about fever or infection.

Friday Night (determining care for Saturday)

WBC = 0.1
HGB = 8.6
Pltlts = 46

So today, Saturday, my care adapted to these.

If HGB gets 7 or lower, they will tranfuse red blood cells to keep me from getting any more anemic.  Those would have to be "leukoreduced" (purified to be red-only) and irradiated (to destroy anything that is not a red cell)

With platelets below 50, they  worry about bruising, and my gums.  Below 50 I'm barred from using a toothbrush, and must use a "Toothette" (a coffee stirrer tipped with a banking-soda-infused sponge).

I am officially neutropenic, with a white blood count of  0.4 vs a normal 4 to 11. I have at last reached that immunocompromised state that we have been worrying about for a month or more.

I am also anemic, with hemoglobin of 8, vs 11 to 14. So I am easily fatigued.

Platelets are at 70, which is still above the risky level. Between 20 and 50 they worry about bruising during normal activities, and if it drops below 10 I will get a transfusion of platelets.

Thursday Jan 25th

Mrs Blogger was joined by Bloggette #3 (12 yrs old) for a midday visit.  Bloggette Three is something of an old hospital pro, having had her appendix out a couple of years ago.  But true to the Spirit of Homeschooling, I made sure to explain as much as I could about my room and treatment, and she made sure to extract the promise that Mrs Blogger would take her to Wendy's for lunch.

I felt pretty good today, both inside and out.  Working from unjustified optimism, I was a little too reckless at lunch and ordered the vegetarian chili, which struck the wrong balance on the nausea/appetite ratio (it was far too disturbing/nauseating).

For dinner, I'm going to avoid anything red (chili, ketchup, burger or hot dog) and stick with things that are whiter and creamier.

• Strawberry Chobani yogurt to be mixed with a dry bowl of Special K*
• Blueberry Chobani yogurt to be mixed with a dry bowh of Rice Crispies*
• Side of 2 slices of bacon, just in case "savory" ends up being more appetizing
• A milk (for tomorrow's coffee) and two waters (for later)

*Yes, it is a little sad that variety at dinner comes down to the shape of one's puffed rice.

Being generally in good form is important because the personal care schedule keeps getting more elaborate.

Almost every symptom or body function is riding a crazy sine wave.  Nothing is expected to have constant anything. What's up is likely to go down and then up, while others will go slow-fast-slow or down-up-down, and you never know when to fire the booster rockets or the retros.

The Daily Schedule

Med Schedule

• Morning, Noon, Night = Acyclovir (anitviral), Ursodiol (liver protect)
• 10am & 10pm = Cipro (broad antibiotic) to be replaced with a targeted antibiotic in case of fever
• Bedtime belly shot of anti-clotting (daily until platelet counts drop, then likely replaced by a bedtime Neupogen to boost platelet counts out of their nadir).

Oral Care Schedule

• Morning, Noon, Eve, Night  = Brush teeth with Sodium Fluoride, rinse with Calphasol, wait :30, chew Troche pill
• Morning, Noon, Night = Drink dissolved L-Glutamine ("with food" except I don't eat that often)

Intervenous Schedule

• Continuous fluids (Saline 100ml/hr), so I'm always tethered to the wheeled IV pumps/pole
• Supplemental minerals (today it was Potassium, previously it was Magnesium)

Testing Schedule

• Every 4 hours vitals (blood pressure, pulse, temp, oxygenation)
• Daily weigh in (has been stable last few days)
• Nightly blood draw (as ports are flushed and rotated so that none get stale) (Mostly looking at blood count so we can see the nadir coming on, and at liver/kidney function, and at mineral leves)
• Nurse Practitioner or Physician Assistant "stethoscope check"
• Official Physician's rounds "stethoscope check"
• Stool test to track change from constipation to nausea (sorry, this is a medical blog and my poop is a constant source of conversation with my caregivers. Every nuance is lovingly examined: the objective timing, consistency, flow contents, and my subjective attitudes toward it both before, during and after. My literal hot s--- is figurative hot s--- around here.)

Hygiene

• Wash hands every time I'm near food or the bathroom
• Gather equipment for towel-bathing (but haven't re-summoned the nerve)

Wednesday Jan 24

Today's word of the day is fatigue--at least for the first half of the day, when the only question was whether I felt more like lying on my left side and facing the door, or on my right side and facing the window.

Now I'm doing much better and waiting for my lunch to come.

They've added another step to my oral care regimen: 3 times a day, I will wash down 16 oz of L-Gluatmine solution with the aim being to aid in the repair/health of my throat & gut.

VISUALIZATION EXERCISES

THE FEMURS OF CHATEAU BLOGGER

Stem cell = 1 grape
Femurs = each a long and skinny wine-growing estate on a sunny hillside
Other long bones = outlying plots of land that are attached to Chateau Blogger
Marrow = the actual vines, old and overlapping of Chateau Blogger

In a good year, Chateau Blogger can have as many as a billion individual grapes on the vine. But we will have to burn the vines and start over.

Knowing we would have to burn all the vines at Chateau Blogger, a small crew went out, with Mozabil grape shears and cut 18.28 million of unripe grapes from the vines. These were separated, sprayed with DMSO and put into the freezer at the local cooperative.

Soon thereafter, the vineyard hands set fire, repeatedly, to the vines for 5 days of burning.  After a day of rest, the grapes were retrieved from the co-op and planted in the ground.  Unfortunately, we will miss a season of harvest, and will be dangerously short of grapes, raisins, skins/tannins, and wine for a season (a week) while the freshly-planted grapes take root, grow, and produce fruit.


GILLETTE STADIUM

Gillette stadium holds 66,000 people.  I have a crowd of 9 million people (stem cells) that I'd like to get settled in their seats.

It ends up being something like 4 million stem cells per femur, with a million more scattered across the rest of my marrow.

I want each of my femurs to soak up 60 Gillette Stadiums worth of stem cells.  In my mind's eye, I picture 66,000 white cells nestled in their seats, and then I shrink that image and nestle it into my femur's core.  Repeat 60 times each side. there's plenty of room and what's important is that they get settled, not that they settle in any particular bone.

Stem cell infusion

The flavor of the day turned out to be creamed corn which was the smell that those around me detected as my stem cells were re-administered at about 10:30a this morning. Personally I never smelled anything, but they will keep giving me IV fluids until it is no longer wafting out of me.

They gave me pre-meds similar to those that they have given in the past when I got Rituxan. Namely they gave me Benadryl and Tylenol, just in case my fever system accidentally decides to spike a fever in reaction to a sudden appearance of a large number of immune-related cells.

I was expecting a bit more fanfare when the cells returned (below). Something more medieval, like a courtier walking backwards holding a golden bowl, or a guy with a mace leading a procession.  Nevertheless, here they are, my new lease on life:

Monday Night

My mother and brother grin broadly during their visit Monday night.

Medical Monday Rest Day

Today is/was my Rest Day before getting my stem cells back tomorrow.

Yesterday, Sunday, was largely uneventful, too.  Sunday was my first and only day getting Malphalan (the final "M" in the four-part B-E-A-M chemo combination I've been undergoing).

Both days, everything from my rib cage and "outward" looked and felt really good. Good complexion, good hair, good mood.

But then my innards felt slow, or made of wood, like all the organs of the chest and thorax had been replaced with something inert.

We're up to 4 drugs for managing anti-nausea (successfully), doing tricks like dialing back on Compozine (because it might make my upcoming nadir worse) and introducing a new one (whose name escapes me).  And 3 drugs for anti-constipation.

Unlike the way that a fever can be an important part of getting better, or at least an important symptom, there's also no sense that nausea is a necessary or helpful part of chemo: It is solely a bad side effect, and not an indicator of anything or an important path of action, so we have no hestiation going after it when it peeks out in the form of a hiccup or a knot near my belly botton.


Cipro is a broad-spectrum antibiotic (because we're anti-germ). and Ursodiol for protecting my liver.

A READER ASKS: " I do have a silly question: will the scent of creamed corn accompany the injection of your own stem cells... apparently that can be a thing based on how they are preserved or something."

ANSWER: I've been told to prepare for more of a garlic smell, that I will give off as the stem cells are transfused.  The DMSO (Dimethyl Sulfoxide) that has been mixed into my donated cells and used to protect my stem cells from the freezing cold, being a sulphur compound, can be stinky.

Saturday

Not much to report today: I slept late and so far have only eaten Special K with milk or yogurt or most recently two bags of potato chips.

I finished my last dose of atopica side at about 2 and we'll have my last dose of heresy tonight at 9 p.m.

Tomorrow I will get my first and only dose of Malphalam, the M that will conclude my BEAM therapy.

Monday will be a rest day and then Tuesday I will get my stem cells back. 

Blocking is going to get less frequent simply because I don't think you're going to be that interested in the different nausea and platelets side effects.

Maybe tomorrow I will do a hair inventory but right now I would say I have plenty of head hair a thinning of eyebrow hair, and a lack of nose hair.

I did get a new-in-box Norelco shaver (germ free) that I will now try a quick shave with.

Friday

Somehow it is Friday already. And Friday is almost over. Mrs Blogger and I began a 500-piece puzzle today that's just about the only thing new.

Mostly it feels like my whole insides have slowed down: my heart rate is slower, my appetite can barely support two meals, and they are giving me injections to help me pee. My entire alimentary canal feels slow: full, unhungry, and unmoving. The staff reminds me to order food.

I woke up this morning weighing 194 lbs, a 10-pound gain since admission and apparently almost 100% of which was water, since after the lasix (sp?) injection I started peeing immediately and didn't stop until I had lost 10 pounds.

Because they were overfilling me with water they have disconnected the tube that was pumping in water. As a result for the first time in several days I'm entirely without tether and can Pace back and forth in the room for exercise without hauling my IV stand with me.

Medical: Physically well, Mentally scattered

Maybe it is the hyperness of the steriods, or maybe I'm just bored, but my blogging output seems an interesting reflection of the fact that I'm physically pretty well off. My only complaints:

• Gums seem itchy, but I'm on an elaborate 4-times a day regimine of sodium flouride gel, a 2-part rinse, and an anti-fungal tablet (to prevent thrush, a fungal infection typically seen in nursing babies that's otherwise hard to fight)
• Constipated. The anti-nausea Zofran, key during chemo, but very constipating, is always way ahead of the Colace, Miralax, and Senna coctail they give me. As they'd say in the olden days, "I feel my bowels are in uproar"
• Agitated & Tired. Probably the steriods and so far I've refused the sedative.

Right now I'm supposed to be sleeping (early) as the hour-long last chemo of the day goes in (a second dose of Ara-C (Cytarabine), but I realized that I han't brushed my teeth and that only after waiting 30 minutes post-rinse could I take my anti-fungal and go to bed for real.

Lyrical: Chemo Birds: Notary's White Taped Partridge

Notary's White Taped Partridge

The small Notary's White Taped Patridge thrives in ecosystems that still rely on paper documentation.

Medical facilites are extremly fertile in this regard.  The White Taped is particulary fond of 4th generation xeroxed forms (whose image is slighly askew) such as pre-procedure release forms, Power of Attorney forms, or indeed any form that a patient is inclined to sign or date in the wrong place.

Named for the unusually strong, opaque, and useful excretion it makes through its beak, it used to be common when typewriters were common.

With the adult being much larger than size of a human thumb, the bird and its nest are easily overlooked. It can still be found, as shown, having built its nest out of collected shiny objects, usually a mass of paper clips.

Lyrical: Chemo Bird: The Great Silver Crane

The Great Silver Crane

Among the largest of common North American birds, is the Great Silver Crane, which has prolifereated as patients have grown more obese and Hospitals have sought to avoid both dropped patients and care-team back injuries.

Like the Barn Swallow, the Great Silver Crane nests exclusively on celings among the beams.

Like the Baby Delivery Stork on steroids and growth hormone, the Crane lifts humans in a giant knot of gathered bed linens, except that in the case of the Crane, the human is way bigger.

Capable of lifting a stated maximum of 200Kg (440 lbs) and apparently quite vigorously-attached, these powerful birds are nonetheless motionless for much of their lives.

At right are shown a nesting pair of cranes with their tails harnessed to their keeper's yoke.

Nests are built from a combination of anodized aluminum, steel hangars, and amortized elbow grease.


Recently Revised: Dial Faced Constrictor and Screen Faced Bower Bird

Search for  all the Chemo Bird postings.

Lyrical: Zillow Listing of My Room

 Longwood Efficiency 1/2 Bath with Riverway Views & Honey Oak Interior Accents, Throughout

Foyer

Enter through the luxuriously-wide honey oak door, wide enough for a team to wheel a bed through. Unburden youself in the curtained and privacy-controlled foyer. Refresh youself at the sink.

Charming door hardware allows elbows-only operation. Foyer contains the thermostat and the servant-call (and cancel) buttons. Look up to see the postive-pressure air handler


Library

Just off the Foyer is the Library.

Relax in your favorite reading chair and slippers. Oxygen ports help daily cares to melt away.

Chrome plated shelves keep your library close at hand. Perfect library for your busy blogging lifestyle. Convenent bin storage breathes new life (and sealed medical supplies) into this new-concept library for our post-print world, giving the look of an educated person's library without the guilt of feeling like you need to read books.



Dining Area

In this open plan apartment, your dining area is just steps away from your Library. (Note that for the open house, we'll re-stage this photo with better tablewear) Owner will consider separately selling or leasing the Mid-Century Modern crome infusion stand with upgraded triple pumps.

Sleeping and Changing Area

A fully-adjustable, easily sanitizable bed awaits in your sleeping area, just steps from the library and dining and offering easy access to the kitchen and master bath. Handsome honey oak built-ins powerfully evoke nostalgia for the late 1980s and early 1990s.

Nurse Cave

Escape to the nurse cave to relax! A unique experience entering blood pressure, recent medications, chemo adminstrations, and urine output.  Serves as a hub for all your care activities!

Efficiency Kitchen

Enter the cozy kitchen area with the confidence that you actually hate to cook and the only thing you can make is a room service order.  

Fridge stores only single serve waters and tiny packets of Wegman's Wasabi Sauce that you've saved from past sushi orders. Requires virtually no cleanup because all your food arrives and leaves by tray anyway.

Imagine indulging your inner environmentalist knowing that you can sort your garbage 4 ways: Trash (grey), Plastic Recycling (pink), Biohazard (red, lower left), and Sharps (left wall)



Master Bath

Your key to independent living, this marvel of space efficiency has premium built-ins like a dual-roll, high-capacity toilet paper dispenser (left) and a servant-call intercom panel (right).  Not quite a built-in bidet, the long, chrome central arm on the toilet is actually a down-facing bowl washer, not an up facing you-washer.

Office

Dramatic city views from the panorama window overlook the Winsor School, with the Riverway of the Emerald Necklace and Longwood D-Line Station just beyond.  Free hospital WiFi only requires cumbersome re-login about every 2 hours.  Svelte guests can perch on the long Corian-topped window ledge.

Medical: Transplant Day -7

I'm all checked in to room 777 Feldberg. Mrs Blogger is napping. All my possessions (mostly electronics, like laptop, tablet, phone, two mice and two headphones and two pairs of reading glasses) have been wiped down with disinfecting wipes. I've doffed my arrival clothes and donned clothes that were new, hospital-issue, or freshly-laundered and brought in ziplocs.  The door has been officially closed on my room.

It does not have an airlock, but does have positive air pressure and a special door.  I don't have a shower, and will either go without or be moved to a room that has one when it becomes available. Mrs Blogger as "not the patient" has to wear gloves over disinfected hands.  I had to take a sanitizing shower this morning, but can go gloveless.

The best guess is that I will keep my venous line not just through chemo, but maybe until I go home. By then the skin will have healed more around the tube, and it'd be just too useful if I need transfusions or other help.

THE SCHEDULE FROM HERE

Unlike regular chemo, where day 1 is the first day of chemo, this week will be numbered from Transplant Day 0.  So all of this week's days have negative numbers.

Days -7 through -2 will be devoted to BEAM chemotherapy

BEAM is named after the initials of the chemotherapy drugs used, which are:

• BiCNU ® – carmustine
• Etoposide
• Ara-C – cytarabine
• Melphalan.

Day -7: B = BiCNU / Carmustine .  We know it is a mustard-gas family chemical because of its "-mustine" suffix

Day -6 EA = Etoposide & Ara-C (Cytarabine, the "fake Cytosine" that jams the DNA zipper)
Day -5 EA = Etoposide & Ara-C  (Etoposide disrupts the enzymes that mediate DNA division)
Day -4 EA = Etoposide & Ara-C
Day -3 EA = Etoposide & Ara-C

Day -2 Melphalan

By Day -2, all my stem cells and most fast dividing cells (hair, mouth, gut) have reached their nadir,  and I'll have stopped production of new platelets, white & red blood cells, so these will begin their own trip to their later nadir as the surviving blood cells die of old age

Day -1 = Rest day (as chemo clears in advance of giving my cells back.

Day 0 = I get back half--9 million--of the stem cells I donated. The life sustaining minimum would be 1 million. A standard transplant has 5 million.  Healthy humans have billions and by Day 0 I will have near-none.  Growing back from 9 million cells, I only have to regrow by a factor of 100,000x instead of 1,000,000x (which, put logarithmically is an advantage measured in hours, not days)

Day 1 through 7.  I'll probably be sedated, since there's not much to do but wait, and my brain may be foggy (or at least trouble concentrating) from the Chemo.  They say reading is basically impossible, but books on tape or the Food Channel are sufficiently untaxing.

Worse, this is where the mature blood cells will die of old age and I'll be left with low everything (low platelets, low white cells, low red cells) and will likely need transfusions

Day 8 through 13.  Somwhere in here they declare the "engraftment" of the stem cells to have worked.  Engrafted stem cells will have migrated back to my marrow, found a niche, and started dividing, making new stem cells, new platelets and reds, and new white progenitor cells that will still take a little longer.

"Day 13" is 21 days from today.  Sometime around Feb 5th

Lyrical: Chemo Bird: Hememingbird

Hememingbirds / Dickenson's Vacutainer

This family has the strictest pecking order of any social bird.

Members of the flock will always feed in the same order, as established by medical priority and the type of internal preservative, and enforced by their flamboyant head coloration.

The entire process is usually overseen by a phebotomist or Registered Nurse. The flock can be unruly, and the process traumatic, but if the tubes behave well, the human drawing the blood rewards each with a sticker with a happy, uplifting message, such as the patient's name and medical record number.  The tubes then wear these stickers for the rest of the day, similar to an "I Voted" or "Best Speller" sticker.  It is really quite cute.

All of these birds feed the same way: After inserting a small gaged needle into a peripheral vein, they nestle head-first into small, sheath-like tube, amost like a lilly or honeysuckle blossom.

Impaling their colored stopper plumage onto the stigma of the flower's spike-like pistil, they draw venous blood into their abdomen using air pressure (their abdomen has been evacuated, and the vacuum draws the blood).

Photo Credit MatthewLammers, Wikipedia

While rarely all present at the same feeding, the established order never varies.

Pecking Order - Color - Social Role

1) Sky Blue Phlebotomy: feeds first to assess coagulation
2) Gold Phlebotomy / Tiger Top Phlebotomy: chemistry tests
3) Ruby Red Hememingbird: any tests requiring serum
4) Royal Blue Phlebotomy: detects trace minerals
5) Pale Green Phlebotomy; liver tests
6) Dark Green Phlebotomy: tests for ammonia & calcium
7) Green Heparin: tests for bacteria
8) Lavender Phlebotomy: complete blood count (frequent chemo ward visitor)
9) Bald Phlebotomy: viral tests
10) Flamingo Phlebotomy: for blood typing and blood bank testing
11) Tan Phlebotomy: test for elemental Lead
12) Grey's Phlebotomy: Sugar tests

The Pecking Order, in chart form:

Lyrical Chemo Birds (Pending; Note to Self)

Just updating the list of birds I'm resolved to describe at some point

Recently Identified:

• Intravenous Tick Bird (Symbiote. Rides on the arms of larger mammals, removing blood suckers)
• Infusion Pump (whose calls of alarm echo through the forest at night, at just the right frequency to be heard by patients but ignored by nurses. The calls seem to say Bob-O-Link or Air-in-Line)
• Long-Necked Showy Monitor Multi-hued and with a seemly-endless 99 channels of communication, patients seem entertained to watch for hours at a time)
• Halyard's Silver Nitrile (unlike the individual Halyard's Purple Nitriles, the Silver nests in colonies of Small, Medium, & Large)
• Screen-faced Bower Bird (discoverd that the Velcro-Collared Constrictors / Dial Faced Bowers tend to be wall mounted, and all the migratory / five-footed bower birds are screen-faced these days)
• Chrome-Billed Platypus. Amphibian found in aquatic environments. Red-ringed male and Blue-ringed female nest on either side of hospital sinks.

Birds identified early on that are still to be covered in future editions:

• Variably Billed Oncologist
• Migratory Nurse
• Great White Commotion
• Five Footed Stool
• Chrome Plated Stand
• Tube Tailed Saline
• Alcohol Swab

Wrapping up at Work

Today was supposed to be my last day at work before entering the hospital, but there's something about lose ends that turns them into teaching opportunties, and I was happy to share a bit extra about the systems I'm entrusting to my co-workers.  So there's this little bow-wave of details-on-details still in front of me.

Originally I thought that I'd be in the Hospital on Monday (because they would not be observing MLK day) and I thought that work would have a holiday (because in 2017 it'd been a holiday). 

Turns out the exact opposite is the case: It's the hospital staff that will be off Monday (and admit me, instead, 12:40 Tuesday) and work that will be going (and having the 7:30am call Monday).

Chemo Birds Index

I just found out that my principal oncologist, Dr. Robin M. Joyce, is a birder.  At some point, we're going to have to author a big coffee table book together.  To that end, I've figured out how to keep a live index in 1 place:

 all the Chemo Bird postings.

Kinda funny having an ornithologist oncologist.

Way Over Quota

Today's goal was 5 million stem cells. They knew (but didn't want to say) that I was doing really well.

So they initially downplayed both my high blood counts going in (they wanted at least 3 (thousand white blood cells per microliter), while 4.5 to 11 are normal, and I was 84) and downplayed the luscious raw salmon color of my cells coming out.  They noted these things, but downplayed the implications.

As it turns out they got 18.28 million stem cells and I will not have to come back tomorrow! This number is an actual count, made in a cytometry lab. It took so long to get my results because it takes just that much longer for the laser cytometer to count to 18 million vs 3 million which would be a normal "good day"

So I won't immediately benefit--they won't/can't reinject them all, for some reason, but I will have spare bags.

I have asked them to run them all through the centrifuge again and only give me the ones that are about 6'2", with an athletic build and decent calve muscles but they seemed evasive in their answers.

Horseshoe

I made this:

By getting hooked up like this:

And felt a kinship with this:

Just as I used to believe that spare ribs were surgically removed from pigs, I used to belive that  Horseshoe crabs were "donating" their blood, like cows being milked or sheep being shorn.

To my horror, while Googling around for photo-analogies to stem-cell donation, I've come to believe that the crabs are, in fact, being exsanguinated (like, to death), since the pictured bottles are (1) about the volume of a crab's entire innards and (2) not exactly being carefully metered. Shudder.

Lyrical: Chemo Birds (Apheresis Birds)

Clear-Bellied Crud Sucker

Onithologists debate whether the Clear-Bellied Crud Sucker is smallest member of the Greater Shopvacs, or in fact the largest of the Lesser Suckers.

Your Blogger classifies the Crud Sucker as the smallest and perhaps the most adorable of Shopvacs.

Even as the Emu is more Ostrich than Kiwi, the Clear-Bellied Crud Sucker, with its indirect method of feeding, clearly has more in common with Greater Shopvacs (such as the flamboyant Orange Ridgid or Sears' Wet Dry) rather than the Lesser Suckers such as the Common Dustbuster or the Showy Dyson.

The Clear-Bellied Crud Sucker perches on the end of vacuum lines in almost any urban habit that has vacuum lines.

Unlike the Greater Shopvacs, however, the Crud Sucker does not generate its own suction. Rather it relies on connecting its tail to the vacuum line, creating low pressure in its large polycarbonate belly.

The Crud Sucker is able to pull in great quanties of crud--up to 1100 milliliters in some varieties--without having its intake blown directly to excretion.


In many ways the Clear Bellied Crud-Sucker is like the carrion birds, feeding on the cast offs and leftovers in its habitat. Having no beak, it feeds through a long, flexible, tube-like proboscis.

Sublingual Sap Sucker / Dental Shopvac (not pictured)

While not found in hospital habitats, the Sublingual Sap Sucker is found in dentists offices, and easily identified from its graceful, swan's neck (Latin: saliva ejector), its rasping calls, and insatiable thirst.

Red Blooded Spinner

The Red Blooded Spinner, a member of the Centrifuge family, builds a small rotating nest inside a much larger, more elaborate outer nest.

Like all Centrifuges, it bears no more resemblance to its wild cousins than the domestic chicken does to any wild bird.  As with the Uranium Centrifugue, private ownership is illegal, except in Iran and North Korea.

Unable to feed itself since its domestication during the dawn of Agriculture (8000 BCE), for hundreds of generations it has been utterly reliant on the Apheresis Technician to connect its feeding lines to its preferred food source, stem cell donors.