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: