Next Big Day: Jan 8th

Late next week, I'll start injecting myself with Neupogen to encourage my own stem cell production.  Two shots in the belly per day for 3 days.  Then I'll get a shot Sunday night that encourages the stem cells to emerge into my blood.

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

As noted earlier, being a cancer patient is like having a really bad part time job.  Today was definitely a full day at cancer work.

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.

Dental Jeopardy (the good kind)

Who does my French-born dentist think she is, that as I recline in her chair discussing my upcoming treatment, and as my saliva is being suctioned, that she gets to ask aloud "which President of France was it that died of lymphoma?"

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.

Happy Hollandaise / Cheeriest Noel

Yes, I made my annual Christmas Brunch of Eggs Benedict and wish you all Happy Hollandaise

Meanwhile, as I shoveled our front walk (of our white Christmas) it dawned on me that the letters of

Beth Israel Deaconess

Can be rearranged to spell

Badass Cheeriest Noel

Other (computer assisted) badass anagrams of Beth Israel Deaconess include

Badass Orient Leeches
Badass Select Heroine
Badass Elect Heroines

Christmas Eve; Looking Good

I feel great, I've got the immune system.  I'll avoid sharp stuff ('cept a wrapping paper cut) just in case my platelets are low.

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:

20 Dec (Wed) go/no-go on transplant (2pm) (was a go, so...

20 Dec (Wed) while in with the Doc, they took and EKG (that's Heart Test #1)

20 Dec (Wed) before leaving they took a lung x-ray (that's Lung Test #1)

and somwhere in there they also did a blood serum test to ensure that I'm negative for things like HIV and Hepatitis and other potential "latent" diseases that they don't want flaring up when my immune system is low

26 Dec (Tue) Dental cleaning, polishing, exam, & final sign off (confirm no dental complications) (1pm- 4pm)

28 Dec (Thu) 8:45am Bone Marrow sample (confirm no "extractable" cancer) (to confirm the PET)

28 Dec (Thu) 12:45am Echo CDAC (confirm no heart complications) (to confirm the EKG)
28 Dec (Thu) 02:00pm Pulmonary Function Test (confirm no lung complications) (to confirm the X-ray)

The doctor also said she wants me to think about the next phase as: "BEAM Chemotherapy with Stem Cell Resuce".  That is, that the real treatment of the next phase is the BEAM (to clean out any hidden lymph cancer), and that the stem cell part is there to rescue me from what would otherwise be the "dose-limiting side effects"   So the BEAM is the treatment and the stem cells rescue me from its side effects.

No Lymphoma in PET Scan; Recovering White Cells

I was a little bit latelets for my platelets.

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

BIDMC called. My platelets are too low (risking "not clotting" or even hemorrhage).  So I'm off in the minivan for 7 Shapiro. They're expecting my at 4:30 which is doable (GPS says 34 minute drive)

White blood counts are still low (up from 0.7 to 0.8 vs normal of 4.5 to 11) and platelets fell. Will get a blood test again tomorrow and see if the trends continue.

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.

Schedule: Next 5 Months

My hospitalization period (3 weeks, solid) is scheduled to begin c. Jan 15th.

My last "immune compromised" must-work-from-home ends roughly Tuesday Dec 19th.

In between, my schedule looks like the ability to work 3 to 4 days per week until Friday, January 12th

WORKING PERIOD PRE-TRANSPLANT

18 Dec (Mon) Tests & PET Scan (8am - Noon) (confirm no "scannable" cancer)

20 Dec (Wed) go/no-go on transplant (2pm)

[ expected conclusion: I am "clean enough" to donate my own cells]

[ begin checking to ensure there are no complicating dental, heart or lung factors for me as recipient]

26 Dec (Tue) Dental cleaning, cpolishing, exam, & final sign off (confirm no dental complications) (1pm- 4pm)

28 Dec (Thu) 8:45am Bone Marrow sample (confirm no "extractable" cancer)

28 Dec (Thu) 12:45am Echo CDAC (confirm no heart complications)
28 Dec (Thu) 02:00pm Pulmonary Function Test (confirm no lung complications)

[ expected conclusion: risk of complications is low, especially after composite is re-applied ]

New Year's Week: minimal medical appointments; Kevin can work all 4 days

(self-administer shots to stimulate stem cell production and circulation

[ begin collection of my own cells ]

08 Jan (Mon) Extraction of stem cells Morning 1 (7am - Noon)

09 Jan (Tue) Extraction of stem cells Morning 2 (7am - Noon)

10 Jan (Wed) Extraction of stem cells Morning 3 (7am - Noon)

[confirmation that stem cells are sufficient & healthy & storing well]

TRANSPLANT AND RECOVERY

12 Jan: Last Day at work

15 Jan: 1st Week Hospitalization (chemo kills blood-and-lymph system)

22 Jan: 2nd Week Hospitalization (receive banked stem cells)

29 Jan: 3rd Week Hospitalization (minimal immune system regrows)

05 Feb: release to recovery at home; hair-trigger rehospitalization for any symptoms

12 Feb: Recovery at home

19 Feb: Recovery at home / can resume telework / cannot leave house

26 Feb: Recovery at home

March: can leave house with mask; avoid crowds (similar to current status)

April: Immunizations; hair likely back

Medical: That Masked Man

Somewhat on a lark, I had my blood tested Saturday morning (I figure if blood can be drawn on a Saturday, blood should be drawn on a Saturday)

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

This meant cancelling the big dinner at my brother-in-law's and hosting my arriving brother at our house.  

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"

Medical: Good Levels

Today's blood counts are in the healthy range (no worries of immune or platelet collapse). Brother clear to visit this weekend.

Dental Signoff

During the stem-cell process, the doctors want to minimize the chances that something else will complicate matters.  They don't like anything that:

1) Makes me weak. So I will have to do lung and heart stress tests of some sort

2) Would require a procedure while I'm immune compromised, like a rotten tooth

3) Would be an entry-vector for infection, like bacteria in my mouth (being low on platelets can open mouth sores, and being low on white blood cells can let them in.)

They've already warned me that a big fraction of complications seem to come from the patients' own gastro-intestinal tracts.

Put another way, it seems like 2/3rds of potential trouble is dental.  

But I have great teeth. You think my hair is youthful (it is alert and vertical this morning, thank you), you should see my teeth. Never any cavities.  I have two sorta-fillings, In which the deepest grooves of two of my molars were ground out before any trouble, and a smooth basin of composite was installed. The theory was that the grooves would eventually hide enough gunk that they'd turn into cavities, so lets eliminate any hiding places.

After Dr Vandenberg did the composites in 1988, I didn't go to the dentist between 1989 when the "sealant" was done and 2002 (when it seemed like time).  So that's 13 years.  All I needed was a good cleaning. In between, I toughed out the emergence of my wisdom teeth, which had near-enough room because of teeth taken out for ortho.

So although I actually like having my teeth cleaned, I never made the time.

That, and my 2002 to 2009 dentist in Arlington MA got shaky hands.  He was clearly in denial.

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:

Basically, that's what I looked like, only with the dentist's hands Photoshopped out.

He eventually sold his practice (and all my records) to a guy in Lexington MA, so this week it was time to find a new dentist.  My criteria were:

1) Takes my cheapo plan

2) Is walkable from the house

3) Had a slot available ASAP

And so, shopping locally, I found a nice French lady who'd finished her training at BU.  We did:

1) Digital X-rays of my whole mouth

2) An inspection for the transplant team (a 3-page checklist)

3) A first cleaning (I'll go back 1pm on Dec 26th)

4) An appointment (also on the 26th) to replace a composite that seems loose

5) Prescription rinse (CHG) to rapidly remove bacteria

6) Brushing instructions (she likes Oral B electrics)

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.

Finished Punctually

Finished chemo right around noon and was home soon after.

This week:
11 Dec: Neulasta shot
13 Dec: blood test
15 Dec: blood test
18 Dec: PET scan
(Maybe marrow test and dentist appointment)

Can't spell follicles without folly

I awake in room 774 Feldberg to no ordinary bed head.  The RN assures me this is just Hospital Head, but my hair now looks like this every morning, strangely upright after a lifetime of fine, dry, supine passivity. 


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.

Cancer is like bad part-time job

My new job consumes a lot of my time. Here's how I'd describe it

1. It is part time .
2. It pays really awful.
3. Everyone in the office has the right to ask you to take off your clothes.
4. Others needle you and the boss looks the other way
5. You are a rookie at it and everyone talks in jargon.
6. Your boss picks your hours for the company's convenience, not yours.
7. Lots of weekend and overnight shifts.
8. They want you to quit your other job.
9. You can't quit until they tell you you can quit
10. The office chair is too high and can't be adjusted lower
11. The break room has only junk food (Lorna Doones, Saltines, or nothing)
12. They keep asking your birthday, but there's never a party
13. At the start of each shift, they put a tracker bracelet on you
14. Your cubicle has no sound privacy and only a feckless visual screen
15. The receptionist has soap operas on in the waiting room
16. All employees must wash hands

Set these against a few good things

1. Spacious private bathrooms with emergency pull cord and paddle-style tap handles
2. Nice city views if you get a window
3. Meetings are actually pretty short and productive

Twixt Rituxan and Ara-C

Yesterday: Rituxan injection, and the usual Benedryl-induced nap mid-treatment. Took most of the afternoon.

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

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).

Great Weekend

For this second phase of my treatment, it has consisted of three, 3-week cycles:

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.