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Medical: Healthy Enough to Fight the Flu

So, the good news is that they sent me home from the ER midday on Christmas Eve.

I went because I felt lousy on the 23rd and had called at 3am on the 24th when I was running a 101.1 fever. Standing orders from Hospital to me are call with fever and/or related symptoms (in this case fatigue).  Standing critique of Hospital by me is that they undervalue sleep as a curative.

They wanted me to come straight to the ER by 4am but I said, "how about I see how I feel when I wake up and check with the Clinic at 8am"  Fair deal?

The real issue (which I admit is not worth gambling on) is whether I had a functioning immune system at all.  Happily (1) I did, with a White Blood Count of 4.5--my first "Normal" range count since March of 2018, actually and (2) I was fighting plain old Influenza A, so there wasn't much for science to do anyway beyond (2a) Tamiflu, on the hunch that my first flu symptoms were monday and (2b) lots of liquids

And avoid people and wear a mask--which is a way, WAAY, better deal that spending Xmas Eve (& morning) in the hospital.

So I'm multi-grateful:
1) To have a functioning immune system
2) To have a "known quantity" virus with a known treament
3) To have no secondary (bacterial) infection (that'd require an IV, usually)
4) To be able to wear a mask and do xmas with the family

Merry Christmas!

Medical: July 2019, a great visit

Its been 2 years since my diagnosis, and about 18 months since my stem-cell transplant.

Had I not missed a couple of courses of Rituxan, I'd be nearing the end of my post-transplant infusions.

Yesterday I had a great visit:

1) Neutrophils at 2.5 are normal and total count in the high 3.x is near-normal.  So I have plenty of the right kind of white cells

2) Thanks to drinking about 1Liter of water before my blood draws (and taking my antibiotic late the night before). I had no trouble with the kidney function tests-creatinine and Potassium both normal. It did mean I had to go pee about every 15 to 25 minutes, however (before the commuter train, at North Station, as soon as I burst into the Shapiro Clinical Bldg lobby, after checking in on Shapiro 7, after having my vitals taken, and about 4 more times during my visit)

3) They still don't  like  my Liver numbers--which have always caused them to worry and scan (and cut short  my first Ara-C way back when). The numbers have been consistently elevated (and bounce around) for all two years that we've been regularly testing them as part of the "green top" blood draw (the Metabolic Panel).  Dr W wants me to see a Liver specialist to see if it has a cause or is just "Normal for Me".  Over time, we've done ultrasounds and x-rays looking for liver/abdominal abnormalities and never found anything in the liver.

4) But, Yay! I was approved for a 30 minute injection of Rituximab Hyaluronidase Pronounced: ri-TUX-i-mab hahy-uh-loo-ron-i-deys (brand name: Rituxan Hycela™).

The traditional IV bag of Rituxan, even administered at high speed was nearly 2.5 hours: 1:30 minute drip, which always came with about 20 minutes of IV setup before and 20 minutes of final-pump and cleanup after, and usually came with an IV of steroids before and Benedryl nap in the middle.

Rituxan Hycela, by contrast, is a thick injectable.  Only pills as prep (steroid pill, acetominiphan, Pepcid, and Allegra), and then after a wait, a 45 minute cycle:
- Vital signs taken
- 20 minute belly shot (it is thick, so the nurse maintains constant pressure and it makes a little hard blob under the skin.  I briefly had 7-pack abs.
- Vital signs taken
- Vital signs taken at :15min later

Since my pulse had slowed to the 50s at the :15 mark, we had me stay and do vitals again at the :25 mark where the pulse had returned to the 60s

I have good heart health, by the way, with a low resting pulse.

5) And I (fairly) easily climbed the very long escalators at Porter Square on the transit trip home. (Didn't attempt the stairs-only climb, but may next time)

FROM HERE (if all goes as well as today)

August: A Liver Visit
September: Labs+Rituxan Hycela (maybe a CAT scan?)
November: Labs+Rituxan Hycela
January: Labs+Rituxan Hycela
March: Labs+Rituxan Hycela

so we'll run a little bit past "2 years of Rituxan" because I fell behind on doses.

June 2020: Shingles Vaccine, TDAP vaccination, Pneumonia vaccination
Fall 2020: Flu vaccination

Finally got that Rituxan

Two weeks ago, I went in for counts which, had they been bad, we'd've tried IVIG (another "reboot white cell production" treatment that they don't know why it works, just that it does when others have failed).  Fortunately, the earlier Neulasta had resulted in hopeful counts (near normal)

On Tuesday (Feb 26) my WBC and ANC counts had recoverd further--some actually in normal--and enough to get Rituxan (and we'll test again in 2 weeks to see if they've been tanked or have achieved robustness)

Medical: No Cancer (but not enough Neutrophils either)

First the good news: tests show me about as "cancer free" as tests can.

Also, my Liver Enzymes are back to totally normal

Most people don't have a marrow biopsy (left hip this time) and a PET scan to tell them that the cancer is "very gone" (or very undetected, anyway).  But I did.

The Marrow Tests:

• Looking at the marrow core, it looked like normal, healthy marrow. It looked like a very red matchstick, with tiny little gnocchi (the marrow cells) clinging to it.
• FISH Test looks for mutations inside cells.  It found none (when done on my hip-marrow sample)
• Laser Cytometry looks for mutations on the outside of cells. It found none (when done on my hip marrow sample)

The PET Scan

• Looks for the "glow" of cancer that's sucked up the radioactive sugar they inject. 
• I was a 1 (the lowest possible) on the Deauville Scale (where a 1, 2, or 3 are all good)

1. no uptake or no residual uptake (when used interim) 
2. slight uptake, but below blood pool (mediastinum) 
3. uptake above mediastinal, but below or equal to uptake in the liver
4. uptake slightly to moderately higher than liver
5. markedly increased uptake or any new lesion (on response evaluation)

The bad news is that the tests were necessary because we're trying to understand why my white blood count (ANC Absolute Neutrophil Count) are low:

• 1500 to 8000 is normal
• 1200 would be "normal enough"
• 800 would be "low but probably enough in most circumstances"
• 600 to 780 is where I've been bouncing around (In weekly re-tests Jan 10th to Jan 25)
• 500 is "low enough to worry" and be "officially" neutropenic
• 200 is where I was last Thursday

There were two guesses: 

1. the cancer had returned and was crowding out healthy production.  This seemed unlikely because I was not anemic: my red counts and platelets were fully normal
2. the follow up Rituxan (immuno therapy) was to blame.  Recall that that as part of a 2-year post-treatment to mop up stray mutants, I am scheduled for Rituxan every 2 months and had had it 3 such times.

With cancer essentially ruled out, attention turns to it being a Rituxan side effect and me needing some sort of jump start on my neutrophil production.

They'd tried giving me neupogen (a once-a-day shot...but only once per week) just to see if it would jump start things.  It didn't.

On Thursday, when I was 200, they gave me Neulasta (a long-lasting shot) and scheduled me for a visit on Feb 12th, when they may try something else.

That something else will be an IVIG (Intervenous Immuno Globulin).  They don't know its method of action, but somehow it helps people in my situation.  

Medical: October Was Normal (or not)

In October I did my Rituxan with the proviso that my white count (neutrophils) were on the margin of being low.

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).