Thursday, December 28, 2017
Next Big Day: Jan 8th
Jan 8th is a big day:
7:45a Arrival
Blood test (to see if counts are high enough)
Neupogen shot (if counts are not)
Insertion of a venous line (from clavicle, where 3 valves will dangle, to neck, where the big veins are)
3 hours of donation:
- out one valve
- through a centrifuge
-- heavy red cells get flung to the outside
-- light platelets linger at the center
-- stem cells end up in the middle
-- a probe dropped in middle of centrifuge collects stem cells through a tiny door
- dismissed c. 3pm; might go to movies because..
- call back to hospital 7pm (once the daily catch has been weighed) to get a shot to prepare for Day 2 (if Day 2 is needed, which it likely will be)
Jan 9th would pick up with blood test and donation and might also end with a 'come back tomorrow'
Jan 10th won't probably be needed, but they always schedule 3 days of donation.
Full Day at My Cancer Job
7:55a Train into the city
8:20 Subway to Harvard Vanguard Kenmore
8:50 Check-in for bone marrow (hip) biopsy
9:00 Order refill of Acyclovir prescription
9:10 Into room for biopsy, "hello," numb, big needle 1 = aspiration, big needle 2 = core sample
9:30 Done and re-vesting
9:40 Thank Dr. G; she won't re-take the reins of my treatment until April
10:00 Claim refill of prescription at pharmacy
10:10 Check-in for regular blood labs
10:15 Vials drawn for Complete Blood Count, Metabolic Panel, and Chemistry*
10:20 Begin a brisk 0.5 mile walk in the cold from Harvard Vanguard to Beth Israel
10:35 Arrive at 7 Shapiro
10:50 Mrs Blogger arrives by car; we work the "Birds of the Americas" puzzle in the wating area until 11
11:00 Care Manager & Social Worker consultation (to make sure I've got all the physical, logistical and social support that the family & I need for Jan 15 to April-ish
11:45 Walk to lunch
12:40p Done with lunch; Mrs Blogger heads home, I go to heart test
1:00 Echo cardiogram, with cool doppler to measure velocity of blood & valves
2:00 Pulmonary Function Test (volume & efficiency of blood-lung system)
3:00 Vein check**
Walk to Longwood Green Line; Board at 3:30; arrange pickup in Davis Sq at 4:05
4:05 Mrs Blogger picks me up at the subway in Davis Sq.
As far as I can tell, here's what we're expecting from these tests:
Marrow: "no detectable cancer" (just like back in July; and checking a place a PET can't see)
Blood: "no metabolic problems" (particularly that my Liver numbers would be back to normal?)
Heart: "no muscle, valve, or flow problems" (confirming good EKG from last week)
Lung: "sufficient volume & oxygen carrying" (confirming good chest X-ray from last week)
Vein: "too small, will need a three-headed catheter" This line will be inserted on Jan 8 (which will be another full day at the start of stem-cell collection) and kept unil Jan 17 for both chemo (Jan 15/16) and stem cell re-introduction (after chemo is cleared).
* Here, for the record, is the phlebotomists color chart. I like any coding system: Area Codes, Zip Codes, ASCII, EBCDIC, RGB Colors. You name it. The physicist in me loves that the tubes come evacuated, so that the vacuum pulls the blood out of me. The code freak likes that the draw order and little blob of preservative/test agent in each type of test is indicated by a different color. Below are the colors Harvard Vanguard uses. Beth Israel uses a black-orange "tiger top" instead of "Gold"
Every cancer blood test I've ever had seems to include at least 3 vials:
Gold (Chemistry Tests),
Lavender (Complete Blood Count), and
Light Green (Metabolic Panel).
Then we've also done Grey (blood sugars), and Pink (blood typing, which I consider a huge waste since they keep testing and re-testing my blood type which won't change). I've also done a test for latent diseases in my serum (that might re-emerge if present when my immune shuts down), but I forget if that was drawn in a red or white tube.
**The Vein check occurred on 7th floor of the Gryzmish building, so I wished them a Merry Gryzmish, apparently only the second patient ever to do so.
Wednesday, December 27, 2017
Dental Jeopardy (the good kind)
And whom does she think I am for answering (correctly) Georges Pompidou?*
Do all French people presume that all Americans have memorized French presidents and their cause of death?
Maybe her waiting area had magazines packed with fun French facts, but the issues of Foreign Affairs and Paris Match (from 1974) must have been well-hidden behind People and Men's Journal. Besides, we were all reading our phones.
And without missing a beat or giving me any credit (and never asking how I know any presidents of France), she then moved on to ask, "yes, but what kind of Lymphoma?" and "it involves large star-shaped cells and has a Swedish name"
Admittedly, no, I was not aware of Waldenström's macroglobulinemia, or its reputation for scything down 1970s Heads of State, whether the last Shah of Iran or Gaullist presidents with plumbing-on-the-outside memorials.
Nevertheless, glowing with pride at a trivia answer got me through a thorough second cleaning followed by a grinding and re-compositing of a lower right molar.
I like my new dentist.
*The name Georges sounds even Frencher and sincerely guttural when you can roll your r as your uvula dances in a pool of bubbling saliva at the back of your mouth. They should teach this in high school.
Monday, December 25, 2017
Happy Hollandaise / Cheeriest Noel
Meanwhile, as I shoveled our front walk (of our white Christmas) it dawned on me that the letters of
Other (computer assisted) badass anagrams of Beth Israel Deaconess include
Badass Orient Leeches
Badass Select Heroine
Badass Elect Heroines
Sunday, December 24, 2017
Christmas Eve; Looking Good
On the 20th, I did, indeed get news that the PET showed no detectable cancer and that I'd been cleared for the next phase, conditional on a bunch of "is he healthy enough" tests:
28 Dec (Thu) 8:45am Bone Marrow sample (confirm no "extractable" cancer) (to confirm the PET)
28 Dec (Thu) 02:00pm Pulmonary Function Test (confirm no lung complications) (to confirm the X-ray)
Tuesday, December 19, 2017
No Lymphoma in PET Scan; Recovering White Cells
While there, the nurse let me know that my PET scan was "all clear" for lymphoma* They also let me know that my white blood count had gone from 0.8 to 2.4 which means it is rising and has gone from 1/6th of the normal minimum of 4.5 to at least now being only half of normal.
The PET being all clear means proceding on track for an Autologous Stem Cell Transplant (with me as donor)
The testing schedule is basically the same as sketched earlier. Tomorrow I will schedule a bone marrow test for somewhere in the post-Christmas week.
=====================
*there are still some odd things that show up in my liver, for which I've already had an ultrasound. The liver, being a glucose processing organ, naturally lights up alongside glucose-loving cancer. In fact, both brain and liver are expected to be "bright" in PET scans, so brightness there is usually not focused on as either good or bad. Apparently they saw something unusual in both this and past PET scans, but they've decided that whatever it is, it is not on the critical path for ASCT the way finding lymph/gut cancer would have been.
And they did do an ultrasound of my liver and its neighbors on my Emergency Department visit. It didn't see anything distinctly worrying, so while the liver looks odd, it hasn't triggered any intervention.
New Plates Special
Monday, December 18, 2017
I will continue to wear a mask in public and around strangers.
Today's pet scan was uneventful the actual results of it will be part of my Wednesday afternoon doctor's visit.
Sunday, December 17, 2017
Schedule: Next 5 Months
28 Dec (Thu) 8:45am Bone Marrow sample (confirm no "extractable" cancer)
28 Dec (Thu) 02:00pm Pulmonary Function Test (confirm no lung complications)
Medical: That Masked Man
Turns out I had very low white blood count (0.7, vs normal of 4.5 to 11), so my doctor called and basically told me to be on alert, and follow the other "neutropenia" rules:
- no raw foods
- no crowds
- no sick or recently symptomatic people
- or people who've been around sick people
I also have been wearing a mask, which I figure is so strange and distinctive that it sends a message basically like a bicycle bell: you mostly get the message, and why the sender wants to send it, without having to explain.
Technically, the mask is of very little use to me (I really should carry extra to offer to sick people I meet). It is much better to intercept/deflect germs (and tiny aerosol drops from sick people's nose and mouth), and to do so at their source, rather than me trying to filter them out at the last minute.
But, as with ringing a bicycle bell, I wear the mask as a signal to others and a reminder of what I'm doing. To others it says "something about being sick and [blogger] and don't expect to get close to blogger right now". To myself it says: "wash your hands a lot; don't touch your eyes"
Thursday, December 14, 2017
Medical: Good Levels
Wednesday, December 13, 2017
Dental Signoff
You'd get a cleaning from a rock-steady hygenist and then the doctor would come in and start inspecting your mouth. No matter how gently he probed or held back my lips, the part where he looked at my teeth always felt like this:
I did have some gums that had pulled back 4mm or more, and the hope is that between cleaning and keeping the bacteria down, they'll spring back in the next week or two.
Monday, December 11, 2017
Finished Punctually
This week:
11 Dec: Neulasta shot
13 Dec: blood test
15 Dec: blood test
18 Dec: PET scan
(Maybe marrow test and dentist appointment)
Saturday, December 09, 2017
Can't spell follicles without folly
Could be the steroids they give alongside the chemo. Could be the chemo itself starting to get to the hair (which can be tugged out about ten hairs at a time).
Regardless of cause, it either makes my participation in the Friday morning videoconference for work a little less credible, or requires extra prep time with a wet facecloth mantilla to dampen my hair's enthusiasm.
Mrs Blogger played nature photographer in the patient solarium, and captured this action photo:
My hair follicles are clearly behaving as if something is terribly wrong, like a colony of meerkats standing at their holes as a big predator approaches.
"What was that?"
"I smell danger"
"I see a big cat!'
"Hey guys, what I miss?"
"A cat. A smell. A tremor"
"Hey!"
Obi Wan might say they are "like a million* voices crying out in terror," about to be suddenly silenced.
*Technically earth people have an average of only 100,000 hairs--there goes Old Ben Kenobi being overly dramatic-- but I digress.
My turgid crown could also be a school of shimmering fish moving in great, ever-changing waves, to perplex a relentless, hungry dolphin by their unpredictable movements.
See how some arc upwards while those in the front plunge down? This is no cow lick, it is the hive mind in action! Swoop! Zoom! Dazzle! Feint! Billow! Swish! Can't catch us all!
A few will be sacrificed for the good of the herd, but most will survive this encounter.
And look at those eye brows!
In the second grade, Chris Birmingham made a point of regularly asking if I knew I had "Spock Brows" (answer: "Yes, Chris, thanks").
As you see in the bottom-most photo, these supercilia are now super supercilia, not just surviving, they are thriving.
My brows look like some desert plant in rainy season, sending up a great flowering stalk, groaning under the weight of its blossoms.
Soon they will go to seed, and the goldfinches will feed on the swaying tufts, before the seed pods fall, and all return to the dust. Hopefully they will be back by this time next year.
Thursday, December 07, 2017
Cancer is like bad part-time job
- It is part time .
- It pays really awful.
- Everyone in the office has the right to ask you to take off your clothes.
- Others needle you and the boss looks the other way
- You are a rookie at it and everyone talks in jargon.
- Your boss picks your hours for the company's convenience, not yours.
- Lots of weekend and overnight shifts.
- They want you to quit your other job.
- You can't quit until they tell you you can quit
- The office chair is too high and can't be adjusted lower
- The break room has only junk food (Lorna Doones, Saltines, or nothing)
- They keep asking your birthday, but there's never a party
- At the start of each shift, they put a tracker bracelet on you
- Your cubicle has no sound privacy and only a feckless visual screen
- The receptionist has soap operas on in the waiting room
- All employees must wash hands
- Spacious private bathrooms with emergency pull cord and paddle-style tap handles
- Nice city views if you get a window
- Meetings are actually pretty short and productive
Twixt Rituxan and Ara-C
Learned that my future (late 2018) vaccinations will be:
- TDap
- MMR
- Flu
- HiB
- Pneumoccal Pneumonia
- But that I will get to keep my natural Chicken Pox immunity
Also learned
Both my brothers and 1 sister are donor-matches for stem cell transplants (something strangely-good about that good fortune), even as it looks more likely that I'll be using my own stem cells. Its almost like my mother and father must have been matches for each other, or that somehow my mother was only able to carry children that matched.
Tomorrow: Back to Beth Israel in the PM for a 36 hour capstone course of high-dose Ara-C
Monday, December 04, 2017
5.5 Thoughts, Random and Vain
1) Couldn't remember if I was supposed to have a blood test today, so I called. Answer was "no" (as I suspected) because this really is the "fully recovered" part of the cycle...
2) ...which is why the next cycle starts on Wednesday: the cycles are timed to hit you with the chemo, ride through the nadir, wait for full recovery and then hit you again. Thanks, Science!
3) My neck looks really good. Shaved it with a real razor (which, I now find, is against the rules). The same nurse who said I didn't have to get a blood test chided me. Only electric shaves (happily, with a little extra looking, I just found my Norelco's charging cord)
3b) They don't want me shaving with a blade because they don't like cuts, both as a place that blood can leak out (if platelets are low) or infection can get in (if white blood cells are low). I did have two tiny blood spots and wondered (and did not resolve) whether that blood were extra or not. Was this a shave that in other times would have had no blood at all, but had a bit because I'm slow to clot? I dunno, but won't risk it again.
4) But, yeah, my neck looks great. I'm now grateful that the biopsy scar was hidden by having it coincide with a natural crease about on level with my Adam's Apple. Turns out even skinny guys have neck creases big enough to hide a biopsy scar. At the time it seemed kind of pointless to make the scar look good when the rest of my right neck looked distended and the creases looked irrelevant. But now with no discernable structure under my neck-skin, I'm glad you'd never know it was a scar if I didn't tell you.
5) When I seal my lips and suck the air out of my mouth and neck, pulling the skin tight against the underlying structures, nothing stands out, either literally or figuratively. You can feel "functioning stuff"--a sinew here, stringy muscles there, but no organs save, the "non-cancer" lymph gland tucked up on the non-cancer side (left).
Sunday, December 03, 2017
Great Weekend
Weekend Chemo (starting on a Friday)
Pre-Nadir Weekend (with Nadir expected Sunday/Monday)
Recovered Weekend (where I'm "all recovered")
...and back for another cycle
This past week, we kept testing (Monday, Wednesday, Thursday) for the nadir that never happened (or happened between tests). On both Monday and Thursday I went to Beth Israel to be tested, and if platelets or red or granulocytes were low, to be transfused. Neither time was I low enough to need transfusion
They mostly can't transfuse white blood cells--you're supposed to make your own and other people's are either useless or harmful (In whole blood, red cells outnumber white by 600:1, so whites are mostly ignored, but still sometimes they will do leukocite reduction before they give you somebody else's blood).
The good news is that this was my "recovered weekend" I went to church without a mask, went to coffee hour after, and went to Providence for a foursome dinner with my brother, his wife & Mrs Blogger.
Here's my schedule as far as it is known:
06 December: Rituxan (my 6th...3 from first phase, and this the third of my 2nd phase)
08 Dec - 10 Dec: Weekend #3 at Beth Israel for high-dose Ara-C
18 Dec PET Scan #3 in the hopes that it is "all clear" by now
?? Dec Detist appointment to confirm my mouth is clean enough for ASCT
20 Dec PET Review; Consult to proceed to Autologous Stem Cell Tranfer ASCT
28 Dec Cardio & Lung tests (to confirm I'm healthy enough for ASCT
07 Jan Stem Cell extraction & testing
15 Jan Hospital Admission and start of Cytoxin chemo
20 Jan Once marrow is gone & get back my own
22 Jan Week of misery and vulnerability with no functioning marrow
29 Jan Week of getting enough of my own blood to go home
01 Feb discharge for home; any sign of illness triggers re-admission
?? Feb paranoid about cleanliness, isolation & germs at home
28 Feb End of worst home captivity; can go out with a mask
March: not sure but have the immune system of a newborn (clean slate) but can go wherever you'd take a 1 month old.
April: begin infant vaccination schedule*
Across 2018:
Re-introduce washed raw vegetables
End of 2018:
Can garden, handle stinky stuff
* My body will not remember, for example, that I have had "real" chicken pox and I will have to get the varicella vaccine if I don't want to get chicken pox or shingles.
Sunday, November 26, 2017
Medical: Nadir Waiter Percolator
Two things can happen at the Nadir:
1) Having no platelets--being a hemopheliac, basically--in danger of spontaneous hemorrhage (knocks, cuts or bruises would bleed uncontrolled internally or externally). For this the easy solution is (a) don't risk falls, bumps, or cuts (b) keep my Monday appointment for a complete blood count (c) infuse me with platelets if I'm low (platelets are inert little things and anyone can donate to me, regardless of blood type). Last time it was nosebleeding and sore gums.
2) Having no white blood cells (being immune compromised). For this the plan is (a) stay away from non-family members (eg went to church Saturday and wore a "stay away" face mask (b) don't go out much and (c) monitor my symptoms.
They have to hospitalize me if I show any signs of sickness at all (fever of 100.4 or more, or any combination of symptoms that look any worse than "really tired")
The idea is they have to give me a chemical immune system while we wait for my personal one to bounce back.
- antibiotics if they suspect any kind of infection (no time to test)
- antivirals (but this is on reason why I'm continuously on acyclovir) if they suspect a viral infection
- antifungals (if they suspect a fungus)
Saturday, November 18, 2017
Medical: Chemo 2.2.2.2
Second round (Nov of Oct/Nov/Dec)
Second phase: hospitalization at BIDMC to receive not-so-high-dose-Ara-C
Second dose of Ara-C coming very soon
I was admitted last night as scheduled (lucky me: private room with 3 chairs, table & city views!), and have had my first-of-4 doses of Ara-C
The new news this morning is that my "liver numbers" have continued to fall, whereas last time they spiked at this excact phase--and caused the whole process to grind to into glacial-mode.
With the liver numbers falling, I can likely stay on the every-12-hours schedule and be out of here by Sunday (last time it was every 21 hours and ruined Monday too)
Wednesday, November 15, 2017
Chemo 2.2.1
Second round (Nov of Oct/Nov/Dec)
First injection (outpatient Rituxan prelude to weekend Ara-C in hospital)
Sitting waiting for
- Inspection, (blood labs & vitals)
- Injection (big bag of Rituxan)
- Direction (what to expect this weekend)
Friday, November 10, 2017
Super Immuno Man
I was finally discharged Thursday at 5pm, after tests that morning showed I had the white blood counts 90% higher than ordinary mortals, thanks the Neulasta-stimulated stem cells finally kicking into high gear. I could be a superhero without a mask, but would have to avoid fistfights as my platelets we're still half normal.
Next time I think the goal will be to get my neulasta shot earlier so that its spike in production more closely matches in time the nadir at which the chemo has wiped out the old crop.
Sunday, November 05, 2017
Medical: Neulasta & No lumpsa
I just figured out how it is that Neulasta (which boosts white/immune cell production) can be OK with Lymphoma: because it stimulates stem cells to ripen *into* white blood cells. It does not stimulate white blood cells to grow or divide.
Recall that Estrogen is good for breasts, but too-much-of-a-good-thing with breast cancer, and that Folate (a B vitamin) is good for blood (cures pernicious anemia), but too-much-of-a-good-thing with leukemia. In both cases "good for _____" turns into a corresponding "deadly for _____ cancer"
But Neulasta, (a brand connoting that it is a neutrophil-stimulant that is long lasting (once per chemo cycle)) is "good for [production of neutrophils (white blood cells)]" that is NOT cancer-encouraging, and so does not fit the pattern.
The reason: Neulasta stimulates (cancer-free) stem cells to "ripen" into white blood cells.
This is also why stem cell transplanting works: take out my stem cells (if they can be assumed "normal") wipe out all blood-cell offspring (including lymphs and leuks) and then put the stem cells back and tell them "ripen real fast"
I will get my blood counts again tomorrow. Last time, it showed "higher than normal" neutrophils (stimulated by the Neulasta) but still lower than normal lymphocites...which the chemo has reduced somewhat faster than the Neulasta, at least initially, could replace them.
No Lumpsa
For the first time since April of this year, the lump on the cancer side of my neck (the right) is actually smaller than my lymph gland on the left side. This feels good...I can actually shave on that side (being careful not to nick) in a way that I haven't been able to since maybe June.
I don't want to get over-excited but it is good news. I finally seem to have gotten a "powers of ten" response (maybe a 100x or 1000x reduction) instead of the "division by 3" reduction that I saw in the first rounds of chemo
Wednesday, November 01, 2017
Medical: All the stuff I and mine are taking
When they give you Ara-C (Cytarabine), they give you Zofran (antinausea) and a steroid at the hospital. And they start you on Prenisolone eye drops, because the Ara-C comes out in your tears.
Then they send you home with:
Steroid Eye Drops - prevents inflammation as chemo comes out in tears
Nulasta - 1 shot to boost good white blood (but not those of lymphoma)
Claritin - reduces/prevents pain of white blood cell production pressing outward from inside marrow
Colace - working to end constipation caused by anti-nausea
Acyclovir - (anti-viral) now particularly important to prevent old chicken pox from coming back as shingles as my white blood count drops (which test show, it has)
Vaccinating the Herd
Also this morning, the kids are off to the family doctor to have their first vaccinations. This was always a potential source of marital tension between me (generally pro-vax, but infant-vax skeptical) and Mrs Blogger (who always took the anti-vax posture in our discussions) which we "solved" by postponing indefinitely.
We're actually negotiating with the BIDMC's Infection Control office, since the kids are not infants, not adults, not going to camp, not college students, not themselves sick or immuno-compromised, and not medical professionals, they're actually in a strange lacuna* of the recommendations, where they have aspects of each but are not quite perfectly in any category.
BIDMC cares because they've got a whole isolation ward (7 Feldberg, where I was this past weekend) with people with basically no immune systems, so the rules are:
1) No children under 12 during flu season, regardless of immunization status
2) No visitors over 12 unless immunized
3) No visitors who've had a live flu vaccine within 2 weeks of vaccination
Everyone pretty much agrees the kids now need to be immunized against "the contagions"
MMR
DTaP (for the P)
Varicella (Chicken Pox)
Seasonal Flu
And maybe
HiB (bacterial flu)...though health workers are not required to have this
Pneumococcal (bacterial pneumonia)...though health workers are not required to have this
simply because these are possible threats both in the ward and later while I'd be recovering at home
But probably not these, even though they are required of health workers:
Meningicoccal (more for college, camp, & microbiologists)
Hep B (blood/needle transmission is not what we're worried about)
And probably not
Polio (rare in US; not worth a fight over either way)
Rotavirus (max age is 8 months, so we're way past that)
Hep A (rare in US; not worth a fight over either way)
And certainly not
HPV
Notes on 7 Feldberg (the lymphoma/leukemia/stem cell ward)
Along one side (with the best views of Boston) are the isolation rooms for people who are:
1) Neutropenic (super low immune system, for whatever reason)
2) Autologous Stem Cell (low immune, but at least it is your own)
3) Allogenic Stem Cell (low immune, risking rejection/fights with a transplanted immune system)
These rooms have
1) A sign on the door explaining the condition of the person inside (see above)
2) Any additional warnings (e.g. "no food by mouth")
3) An air-lock style entry. An outer door with a change/wash anteroom and then the inner room
Basically a visitor to the rooms above must:
1) Enter an outer unsecured door (to the whole ward); no kids or flowers beyond this point; There is a "family room" for visitors who do not meet the criteria of the inner ward door.
2) Get cleared through a secured inner ward door
3) Check in at reception nurse
4) lock all personal belongings in a locker in "the solarium"
5) re-vest (not sure on this)
6) enter outer individual door to personal room's airlock
7) do something clean
8) enter the individual room
This past weekend, in the semi-private rooms that flank the Solarium (#4) my visitors were only subject to 1 thru 3.
* a perfect use of the word "lacuna" (Latin for lagoon, meaning "unfilled space or interval; a gap." ) if there ever was one.
Tuesday, October 31, 2017
Medical: Working from home
It is nice to be back at HV:
- Neighborhood locations (2mi from home)
- more homey feel
Sunday, October 29, 2017
Medical; Liver complaint
Unfavorable liver function numbers have slowed my Ara-C infusion from every 12 hours (I shoulda been home by now after a 10pm, 10am, 10pm, 10am Fri-Sat-Sun course) to every 21 hrs: 10pm Fri, 7pm Sat, 4pm Sun.
I see now that 12hrs is pretty aggressive:
9pm - Hour of saline hydration & pre meds
10pm - Infusion start
1am - Infusion end
6am blood drawn for blood, White Blood & metabolic tests
Order breakfast
7am results & go/pause
Chemo bag ordered from pharmacy
Breakfast, bathroom, vein check
9am hour of saline
10am next chemo
Between Infusion end and pre hydration is only 8 hours, and mixed in there's usually twice daily meds, vitals checks every 4 hours, with opportunistic naps and meals
The delayed cycle has been stressful and boring but nut hectic as the planned cycle might have been.
Basically if they hit pause, it is at least for 4 hours awaiting for a next retest after an attempted fix (like " drink more water) (mines been 9 hours each time)
Infusion #3 is now underway from 4pm to 7pm. If the coffee and prayers have made my liver happy, a blood test at 11pm would show it (results by 12mid). If liver unhappy, I'd likely be discharged Monday AM (dropping #4 infusion and we'll see what 3 produce). If liver clears quickly & unexpectedly I will credit prayers and coffee and maybe get infusion #4.
Saturday, October 28, 2017
Lyrical: On a scale of 0 to 10
Instead, Wong and Baker are sitting on a beach somewhere as the royalties roll in. Really? The first 11 integers below five crude emojis and you've got a bankable medical device? Sheesh.
So let me stake out some other corners of this land rush:
Appetite Scale
0 "Bleh"...to... 10 "Voracious"
The concept of Bleh will be depicted by an empty circle, depicting "nothing." Get it? When you have no appetite you eat nothing. This is a fresh medical insight that has not even occurred to even Wong or Baker themselves! The circle will have a secondary read as an empty dish or plate, and therefore hailed as a work of richly-layered metaphor.
I think the next four icons for increasing appetite should be something trans-cultural and universal like:
- One McDonald's Hamburger
- Two Hamburger Value Deal
- Big Mac
- Two Macs Meal
"11" on the appetite scale will be "patient devours chart"
Constipation Scale (days since last BM)
0 "Zero"...to 10 "Ten"
The world that was rocked by the use of face icons may not be ready for counting days indexed from zero, but if I pull this off, I will be so rich I will buy a Cadillac Escalade just to store my collection of condescending environmentalist bumper stickers (which I would otherwise be composting, ok?).
Bottom Line: Do not let my lawyers catch you using integer days to describe constipation duration. You have been warned.
Lyrical: BU Skyline from my window
From bottom to top and left to right:
Foreground: from left to right, that's the Winsor School's (fancy private high school) multi-sport center, and then Simmons College (foreground red brick). The buff-brick building, front right is the Bertha C. and Edward Rose Ambulatory Care Center of the Beth Israel Deaconness Medical Center, all fronting on the 300 block of Brookline Ave in Boston's "Longwood" neighborhood.
Just above Simmons is the horizontal treeline of the Riverway along the Muddy River (the "brook" whose line separated Boston from Brookline). The Green Line's D branch to Newton pops out of its subway at right and runs along the base of the trees.
Just beyond the trees is the neighborhood that Mrs Blogger and I lived in as Newlyweds and in which apartment on Euston St, Bloggette #1 was born and which Blogette #2 enjoyed in-utero.
At the left-center horizon, you see Harvard grad student housing on both sides of the Charles River (not seen). Then Boston University's skyline starts with the Law Tower (Center) the tallest building in the photo, and goes rightward toward Kenmore Square.
Medical: Friday Check-in for first hospital Weekend
Wednesday, October 25, 2017
Random thoughts from the chemo chair
This Beth Israel lady musta been rich. 😋
Chemo ward smells of new vinyl flooring.
I remembered to shave my arms to minimize the tape-rips-hair at the end of today's Rituxan.
The chemo chair seems to show the common heritage between the Barber and the Surgeon: so hiked up that even my long shanks can't reach the floor, and my feet dangle like a kid outside the principal's office. Fortunately there is a little slide-out shelf for use as a foot rest.
Tuesday, October 17, 2017
Medical: Bad news from a good image
In an idealized course of treatment, each round of chemo would have delivered a 1000:1 reduction, going from, say
100 Billion cells "before"
100 Million cells
100 Thousand cells
100 Cells
And in these cases, or in any similar "order of magnitude" reductions after each round the lump would have already been driven to undetectable size back in mid September. But that did not happen.
Mine's been more like 3:1 per round, which results in more like a 30:1 reduction:
Soup ladle
Serving Spoon
Table Spoon
Teaspoon
So we got a 30:1 reduction (in total) where 1,000,000,000 : 1 (or even 1,000,000:1) would have been more normal--or certainly more welcome.
And rather than have an "it happens sometimes" explanation, they have a stronger hypothesis: my lymphoma cells were found have extra mutations in early tests that we didn't have to think about until treatment is underway.
Now that treatment has run its first phase and my lump is still noticeable, it raises the possibility that extra mutations could be (a) mutations that just happen to resist the exact chemo chose for the first rounds or, more ominously (b) my cells are particularly heedless of the self-destruction signals in general, which is bad because ALL rounds of chemo work on trying to get cancer cells to self-destruct.
There's a small chance, too, that the "immune boosting" diet that I've been eating has served mostly to boost my cancer-of-the-immune cells, just like early Luekemia patients died faster when given blood-boosting ( anti-anemia) vitamins. Or like the way a fetus gets priority on nutrition over the mother. So my supplementation with spirulina ends today (but, hey here's a backhanded proof that spirulina is good for your normal immune system)
IF the mutations have been decisive (or prove to be so), then the next option will be not an Autologous Stem Cell Transplant (from myself) but an Allogenic Stem Cell Transplant (from an unmutated family member). To preserve the option of rapid action, we start today letting my siblings know that they will be asked to take a test to see if they are a match.
To answer EO's question from the comments: The stem cells are extracted from the donor's circulating blood...out one arm, through a collector, and back into the other arm. I talked to a friend who'd donated (alongside his brother) to replace his mom's stem cells. The HLA test is done for donor-compatibility. I don't know if there are risk markers on my cells that they can look for on my donors'
And...another reason why they might prefer a donor's immune cells is that the donor's immune system may recognize my cancer as alien even if my own system did not. In fact, by definition, my Lymphoma has done as well as it has because my own immune system was good with it. But once you replace your immune system with somebody elses, there's no going back (one can never re-make one's own)
Monday, October 16, 2017
Medical: Good image from PET/CT (despite bike ride)
Five Footed Stool & large Sharps box.
Just like when the Dental Hygenist steps out of the room while your dental x-rays are being taken, the PET technician steps out of the room during the pumped injection to avoid excess workplace exposure to radiation..and then the tech stays away for the hour thereafter as the injection circulates and the radioactive FDG sugar is drawn to the hungry cancer cells.
Medical: view from my lead-lined holding room
Medical: E to BIDMC PET/CT
Sunday, October 15, 2017
Lyrical: Chemo Birds: Ivory Tainer and the Hornbills
Like the Baltimore Oriole and the Whooping Crane, the native American Ivory Tainer has been driven from its habitat by waves of invasive species. Where the Ivory Tainer was common in both rural and urban settings for at least a century, in recent years it has been displaced by generations of invaders.
In the Ivory Tainer's case, the invaders were the Hornbills: The Creamy Pink Hornbill, the Foamy Hornbill, and Purell's Gelatinous Hornbill.
Once the dominant species in Hospital and Elementary School wetlands, a nesting pair was recently spotted in the church basement bathrooms of St. Camillus Parish, Arlington, Massachusetts, an isolated, pristine habitat untouched in the last 60 years.
All members of the Hornbill (Bucerotinae, literally "cow horn") family are cavity-nesting birds, and mostly occupy habitat originally dominated by Tainers.
When the female Bucerotinae is ready to lay her eggs, she enters the nest through a hole just barely just large enough for her. This opening is then walled up, primarily with her own dried droppings, leaving only a small hole, through which the incubating hen can receive the male’s regurgitated food deliveries and out of which, in turn, the female projectile-excretes her droppings.
All Hornbill nests also contain a small clear window through which the contents of the nest can be observed.
Creamy Pink Hornbill
The Pink Hornbill is known for the accumulation of dried pink droppings around its nest, both at the excretion hole, on vertical surfaces, and often in pools of pink excrement beneath the nest.
Conservationists targeted the Pink Hornbill for its wastefulness and habitat destruction. Pink Hornbills would rapidly deplete a local area and then leave their nest empty and unusable by others. Soon every nest in a habitat would be empty.
A program of eradication in the early 2010s resulted in the Creamy Pink Hornbill being displaced by populations of Foamy and Purell's Hornbills, though the empty, unused Pink Hornbill nests often remain in place.
Foamy Hornbill
The Foamy Hornbill was introduced to the United States in 2011, hidden in a shipping crate arriving from China. It has proved to be fast-spreading.
Purell's Gelatinous Hornbill
Introduced by well-meaning scientists during the H5N2 Avian Flu outbreak of 2015, Purell's Gelatinous Hornbill quickly spread to habitats far beyond the traditional wetland habitat of the Pink Creamy and Foamy Hornbill.
Purell's Gelatinous Hornbill, while widely seen in medical settings is also seen in unexpected habitats like the vestibules of public libraries, grocery stores, and any place geriatric humans congregate.
Purell's Hornbill is identified by its white body, blue crest, and nearly-transparent excrement.
Medical: From Soup Ladle to Teaspoon
- Pre Chemo: size of a Soup Ladle (late July)
- Early August Chemo 1
- After Chemo 1: size of a Serving Spoon (mid August)
- Early September Chemo 2
- After Chemo 2: roughly a Tablespoon (mid September)
- Early October Chemo 3
- After Chemo 2: roughly a Teaspoon (mid October (now))
For some patients, their lymphomas might have shrunk to un-feelable (which should be a word), but the Ocologist isn't worried: that you can still clearly feel the lump results some combination of:
- natural variability
- that mine started out bigger-than-normal (because we delayed hoping to prove it was limited to Stage 1)
- Some of what I'm feeling is probably extra tissue that had been stretched out and is having trouble retracting
- Some may be scar tissue from the biopsy
I have a PET scan at Beth Israel Deaconess Medical Center (BIDMC) tomorrow at 8:30am. How anyone with cancer keeps a full-time job is beyond me (I'm 80% time). I want to start a medical plan for working people that uses fancy machines "after hours" *and* would be cheaper because it was using hours when the expensive machines would sit idle.
Meanwhile, yes, this being 10 days since my Oct 4th/5th Chemo Days, I'm doing well.
The "blahs" cleared up around Tuesday last week (which meant the blahs lasted about 2 days longer than in the first two Rituxan/Bendamustine cycles). The Oncologist did warn that as time goes on, the side effect may worsen as my white blood count gets "worn down" alongside the Mantle Cells (the whole Leukemia-Lymphoma family of cancers is a family precisely because the blood and immune systems are cousins/siblings descended from the same stem cells).
Anyway, I'm doing well, and this week has "non treatment" visits: the PET (Monday) and a Meet the Inpatient Doctor(Tuesday) in which I meet the doctor at BIDMC in whose care I will be for the next 3 rounds of Chemo, which require weekend hospitalization.
I'd like to figure out a way to have friends visit me during my weekend captivity, either by video con, or by smuggling me out to the Museum of Fine Arts or Isabella Stuart Gardener Museum.
The Early Nov*, Early Dec, and "New Years" in-patient hospitalizations are for BIDMC's convenience (not worrying about me missing appointments) and their billing (so they can officially bill me as an inpatient in a semi-private room). As a hospital they can only charge for inpatients, so I have to be an inpatient.
Which is to say, there's no medical necessity for me actually being at BIDMC in my room:
- Infusions every 12 hours.
- Sleep between each days "late" infusion and the next day's "early" one
- Waste 10 hours Sat & Sun between the early infusion and the late infusion
During those 10 daylight hours, I'd prefer to sneak out rather than spend time in a semi-private room with "the other guy's" visitors, or listening to the other guy's choice of art/music/literature/news/nonsense
Email me if you're in Boston Early Nov, Early Dec, and "New Years" and you'd like to be on the escape-mission team. It will probably not involve body doubles or laundry hampers.
*
Early Nov might actually be Oct 28/29 or Nov 4/5
Early Dec might actually be Thanksgiving Sat/Sun or Dec 2/3
New Years might actually be in the week between Xmas and New Years
Wednesday, October 04, 2017
Lyrical: Field Guide to Chemo Birds
BLOGGER'S FIELD GUIDE TO CHEMO WARD BIRDS
Photo: Graduated Pill Swallow, left, and Dixie Water Swallow, right
As they approach the end of their short lifespan, Dixie Water Swallows typically migrate away to die alone in a nest built of litter.
To intimidate and assess larger predators, it can also draw itself up to its full height, and strike them on the head using its extendible arm.
Halyard's Purple Nitrile
Photo: A male Halyard's Purple Nitrile, nesting.
While other dry habitat birds may groom by rolling in talcum powder, the Purple Nitrile is powder free
Halyard's Silver Nitrile
Also migrating from Alpharetta, Georgia, but considerably more social, Halyard's Silver Nitrile is often seen in large colonies of birds of the Small, Medium, and Largelife-stages.
The neutral color apparently appeals to hospital visitors, who are asked to sanitize their hands and then insert their hands directly into the Nitrile, similar to the process of stuffing a large Turkey.
While both shelter on vertical cliffs and small, shelf-like projections, the Monitor prefers the commanding views of the upper cliff, while the Surfbird builds its web-like nest in the sheltered recesses below the keybirds and mice.
Some Vinyl Plovers nest on near-vertical surfaces (as seen in photo, left), while other genera choose elevated horizontal surfaces.
Competes for habitat with the Purple Nitrile.
Pairs mate for life.
Lifespan: 15 minutes, tops, although the life cycle is currently the object of some dispute, as it appears that the Vinyl Exam Plovers' gender is only determined at their time of emergence. At the same time the pair determines their roles, they mate, fail to reproduce, and die.
While mostly flightless, the Vinyl Exam Plover is valued by unsophisticated peoples for its bladder-like skin which is frequently inflated, tied, and lofted in the air for comic effect.
White Tufted McKesson
Whether eggs in a single clutch will hatch simultaneously or sequentially over an extended period of time is largely determined by the onset of lachrymal-mucosal flow in nearby animals. If the young are tightly packed, entire handfuls can emerge simultaneously, regardless of need.
In interactions with humans, McKesson populations can fluctuate drastically: reaching unsustainable lows when an entire breeding season's clutches are wiped out in the initial moments after coffee spills; followed by rapid overpopulation due to overzealous re-stocking by well-meaning caregivers.
Additional birds to be covered in future editions:
- Variably Billed Oncologist
- Infusion Pump
- Migratory Nurse
- Great White Commotion
- Five Footed Stool
- Chrome Plated Stand
- Tube Tailed Saline
- Foam Dispensing Hornbill
- Prothonotary Warbler
- Alcohol Swab
Tuesday, October 03, 2017
Lyrical: Chemo Birds: Distract Yourself from Needles while in Medical Offices
I continue to be impressed by the phlebotomists, the skilled job with the scary name. They make being stabbed with a needle almost worth looking at. I still look away at the "just a pinch" moment, but they make it so "clean" and I'm getting so accustomed that I'm resolved next time to peek.
My habit has been to look away whenever the needle goes in. Turning my head desperately to distract myself. Usually this involves pretending that the doctor's office is actually an exotic aviary filled with rare birds, like this:
CHEMO BIRDS: HOW TO DISTRACT YOURSELF FROM NEEDLES:
PRETEND TO HAVE SPOTTED A RARE BIRD
Black Nosed Ear Looker
Its conical beak is known as the speculum.
The juvenile Black Nosed Ear Looker has a 2.75mm speculum, which is later shed, and the 4.25mm speculum emerges at adulthood.
Highly adapted to its ecological niche, the Black Nosed Ear Looker feeds entirely on a diet of mammalian ear wax.
Latin name: otoscope.
Photo: A Black Nosed Ear Looker and her nesting young.
Red Nested Sharp
Domesticated Sharps may develop internal bubbles. Trained handlers then coax the Sharps into regurgitating the air by rapping with a finger-flick at short intervals.
Their plunger-like tail typically has an x-shaped cross section and a circular tip.
Some Sharps, like their distant cousins, the Vampire Bats, are known to draw blood. Others inject anesthetizing fluid which allows them to insert their proboscis and have it remain in place largely unnoticed by their animal hosts.
Photo: a gloved ornithologist returns a Red Nested Sharp to its nesting box.
Velcro Collared Constrictor (Dial Faced Constrictor)
Latin name: sphygmomanometer murata
Screen Faced Bower Bird
Caption: Screen Faced Bower Bird (or Screen-Faced Constrictor) shown perched above its nest in which it has collected blue objects, similar to the Male Satin Bowerbird.
Also known as the Dial-Faced Bowerbird, it is a close cousin to the Satin Bowerbird. As with the Satin Bowerbird, the male collects blue objects to decorate its basket-like nest. The favored blue objects include latex gloves and Welch-Allyn instruction manuals.
Highly migratory, the Velcro Collard Constrictor is known to wheel its nest short distances up to 10 times a day
Rubber Crested Plessor / Red Mallet / Purple Mallet
The Rubber Crested Plessor was once widespread in North America, but is now rare. Identifiable by its triangular head and swift, darting motion, it interacted easily with humans and initially thrived in urbanizing areas. For reasons that are not entirely understood, it is no longer widely seen, but has been known to nest in drawers.
Latin: plessor rubris
Medical: Blood Test Tuesday before Chemo Wednesday
It is 10 days since I promised to report the insights of the lady "just like me" (same MCL, found in her colon (like my second lump was), same doctor, same hospital)
- Her highs and lows
- Her strategy for second opinions
- The stuff they don't tell you before you start
HIGHS & LOWS
Highs
- Private room during Stem Cell Transplant
- She'd returned to work after only 2 months out (1 month in hospital, 1 month at home)
Lows
- During the 2nd rounds of chemo (Nov, Dec, Jan) the hospital room is semi-private, so you're at the mercy of the other patient's TV & visitor habits.
- The lengths one must go to during ASCT for cleanliness (laundering, bagging, storing clothes, sterilizing ones inside (antibiotics) and out(antiseptic washes))
- Upon return home, there's still several weeks of vulnerability where you can't leave the house and should not share a bathroom
SECOND OPINION
- She went outside the "Harvard Bubble" (where I'm being cared for) and she at least went across town to the Tufts New England Medical Center (where Daughter 1 & Daughter 2 were born, as it happens).
- I'm inclined to see if I can go all the way to Houston (also a great cancer center) to see what they think. In the Audiobook of Emperor of All Maladies, it appears that Houston was a refuge for many early chemo pioneers who didn't fit the "DC-NY-Bos" models of care, but often turned out to be right.
STUFF THEY DON"T TELL YOU (About ATSC)
- All that stuff about sanitizing and isolation listed under "lows"
- That for months I wont be permitted to garden or eat salads due to the soil-borne germs risk.
- That for a month, my food will be exclusively heavily cooked, but later I can add fruits with peels
- That for 100 days my immune system will be like that of a newborn, and will have "forgotten" all the germs I've ever been exposed to and all the vaccinations I've ever had (and then, at 100 days, they'd start reintroducing childhood vaccinations)
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