Got a nice message from my Ocologist: that she will schedule the both ends-scopy and PET as soon as the biopsy clears, but we are held up in cytometry still. More tomorrow.
Monday, July 31, 2017
Lyrical: Like Patton through Belgium
Like the typical teenage male, I enjoyed George C Scott's rendition of Patton's "Third Army Speech" at the start of the movie, Patton.
In it, he says, "We're going to go through 'em like crap through a goose"
Back in high school, my friend Richard Shaker enjoyed inverting this, looking at a field of Canada Geese and exclaiming, "that grass goes through them like Patton through Belgium"
Let me just say that the greens of a Vitamix go through me like Patton through Belgium.
In it, he says, "We're going to go through 'em like crap through a goose"
Back in high school, my friend Richard Shaker enjoyed inverting this, looking at a field of Canada Geese and exclaiming, "that grass goes through them like Patton through Belgium"
Let me just say that the greens of a Vitamix go through me like Patton through Belgium.
Saturday, July 29, 2017
Medical: Still awaiting Cytometry #2 and Genetics #1
There was no new news on Friday as I had hoped. This is not a big deal I assume that I will get my results on Monday.
Thursday, July 27, 2017
Medical: Marrow's Cytology was "no lymphoma"
Another tiny win on the series of tests that are "must win" to avoid stem cell treatment:
RESULTS TODAY: Marrow Biopsy Cytology- No Lymphoma (good news)
RESULTS SOON: Marrow Biopsy Cytometry* (hoping for Friday results)
RESULTS SOON: Genetic Tests of Neck Biopsy (forgot this was still "out there")**
This leaves me with the future chain of "must win" tests, where the series will be cancelled if any along the way show cancer:
ENDOSCOPY VISUAL: an inspection of my throat & stomach for any visible lesions on the walls
COLONOSCOPY VISUAL: are there visible lesions on the walls of my intestines?
COLONOSCOPY BIOPSY: assuming polyps (as in Jan '13) do they biopsy benign (as in Jan '13)
PET SCAN: Is it free of hot spots (except neck cancer and liver & brain sugars)
* Recall that cytology is done with dyes and eyes by a human Cytologist and a microscope, while Cytometry is done by marching cells single-file past a laser and counting the scattered light.
** Genetics aren't make or break, unless it is really weird, because I don't recall any things about MCL where genetics make a difference. The genetics tests began before we even knew it was MCL, and I think genetics were going to matter more if it had been some other kind of cancer.
RESULTS TODAY: Marrow Biopsy Cytology- No Lymphoma (good news)
RESULTS SOON: Marrow Biopsy Cytometry* (hoping for Friday results)
RESULTS SOON: Genetic Tests of Neck Biopsy (forgot this was still "out there")**
This leaves me with the future chain of "must win" tests, where the series will be cancelled if any along the way show cancer:
ENDOSCOPY VISUAL: an inspection of my throat & stomach for any visible lesions on the walls
COLONOSCOPY VISUAL: are there visible lesions on the walls of my intestines?
COLONOSCOPY BIOPSY: assuming polyps (as in Jan '13) do they biopsy benign (as in Jan '13)
PET SCAN: Is it free of hot spots (except neck cancer and liver & brain sugars)
* Recall that cytology is done with dyes and eyes by a human Cytologist and a microscope, while Cytometry is done by marching cells single-file past a laser and counting the scattered light.
** Genetics aren't make or break, unless it is really weird, because I don't recall any things about MCL where genetics make a difference. The genetics tests began before we even knew it was MCL, and I think genetics were going to matter more if it had been some other kind of cancer.
Lyrical: Thanks for the Vitamix
My "bruised hip" feeling is much-diminished this morning. I will bike to work.
Meanwhile...Mrs Blogger received a Vitamix from her family for her birthday. I took the hint. This robbed me of an excuse for not getting enough greens, and introduced me to the world of bitter liquifactional politics.
Most "cancer diet" books agree* on things Vitamixers like: more greens and some berries in moderation (and differ bitterly/hilariously on coffee and fruits and much else).
All diets agree on eliminating grain-based carbs, which I removed from my diet 2 months ago. While I'm not known for my willpower, I'm really good at visualization. This is how I removed carbs from my diet: When you tear open that snack-size bag of Fritos, and pop the first chip in your mouth, what I see is you pulling the pin on a hand-grenade and biting down on the shank. Enjoy your meal. You're welcome.
The upshot? I'm out-Vitamixing her about 4 to 1. Favorite concoctions include:
*Please promise yourself that you won't send me a regime book that allowed a lady in Germany to live cancer free after the doctors said she was terminal. She probably did something diametrically opposed to the thing that allowed a guy in Chicago to live cancer free after his doctors said he was terminal (as described in his book), and I have no way of resolving that paradox without hurting your feelings, and would rather save my paradox-resolution for mystical things like the Hypostatic Union, whether evil has objective reality, Relativistic travel, or light's particle/wave dichotomy, all of which I find much more relaxing.
So far, my beloveds have introduced me to at least 4 competing/conflicting diets:
Alkalizing
stressing high mineral content (dark leafy greens) & baking soda
"Cancer can't grow if your body is high pH"
Anti-Angiogenic
foods that deter new blood supply to growing tumors
"Cancer can't grow if your body won't give it new blood supply"
Ketosis
80% of calories from fat
"Cancer likes insulin spikes and serum glucose; can't grow if your body is burning fat (ketosis)"
Hemp in all Forms (leaf, oil, seed, & smoke)
Because, you know, Marijuana
"Cancer, like most things, gets better with Marijuana"
These disagree on a whole lot (mechanisms of cancer, mechanisms of cure), but all agree that red meat is bad and vegetables are good.
**Buckwheat isn't Wheat Wheat, apparently. Just like Sweet Potatoes aren't Potatoes or sweet (to some).
Meanwhile...Mrs Blogger received a Vitamix from her family for her birthday. I took the hint. This robbed me of an excuse for not getting enough greens, and introduced me to the world of bitter liquifactional politics.
Most "cancer diet" books agree* on things Vitamixers like: more greens and some berries in moderation (and differ bitterly/hilariously on coffee and fruits and much else).
All diets agree on eliminating grain-based carbs, which I removed from my diet 2 months ago. While I'm not known for my willpower, I'm really good at visualization. This is how I removed carbs from my diet: When you tear open that snack-size bag of Fritos, and pop the first chip in your mouth, what I see is you pulling the pin on a hand-grenade and biting down on the shank. Enjoy your meal. You're welcome.
The upshot? I'm out-Vitamixing her about 4 to 1. Favorite concoctions include:
- Chard Remains
- Kale Freezes Over
- Cilantropy
- What the Buckwheat**
- Coconut Milk of Magnesia
Delish.
So far, my beloveds have introduced me to at least 4 competing/conflicting diets:
Alkalizing
stressing high mineral content (dark leafy greens) & baking soda
"Cancer can't grow if your body is high pH"
Anti-Angiogenic
foods that deter new blood supply to growing tumors
"Cancer can't grow if your body won't give it new blood supply"
Ketosis
80% of calories from fat
"Cancer likes insulin spikes and serum glucose; can't grow if your body is burning fat (ketosis)"
Hemp in all Forms (leaf, oil, seed, & smoke)
Because, you know, Marijuana
"Cancer, like most things, gets better with Marijuana"
These disagree on a whole lot (mechanisms of cancer, mechanisms of cure), but all agree that red meat is bad and vegetables are good.
**Buckwheat isn't Wheat Wheat, apparently. Just like Sweet Potatoes aren't Potatoes or sweet (to some).
Wednesday, July 26, 2017
Medical: Upcoming Procedures & Treatment Alternatives
Bottom Line from today's hip biopsy: hope to have cytology and cytometry results by Friday.
Recall that I can do no worse than a 9 month, three-phase of treatment:
- Ghost of Christmas Past: 3 months of Rituxan-Bendamustine (RB Chemo))
- Ghost of Christmas Present: 3 months of RC* Chemo (where C is much more toxic than B)
- Ghost of Chistmas Future: Stem Cell Transplant (3 wks hospital, 10wks recovery)
The tests we're doing over the next 2 weeks are to replace 2 & 3 with simultaneous radiation of my neck during Phase 1 (if the cancer has not spread, we assume radiation and target it where it now is, and RB chemo can circulate and find stragglers). All scenarios assume Phase 1 Chemo, above.
To Replace Phases 2 & 3 with Radiation requires:
A) Clear cytology (humans) and cytometry (laser-sensors) of the marrow extracted today (we already did this for previous needle and surgical biopsies)
B) Clear-beyond-neck PET scan (The best--but expensive--whole body scan for cancer)
C) Clear Colonoscopy and Endoscopy (throat-stomach)
I feel a little like they're moving the goal posts with C, above, but I get it: they want to really really be sure the MCL is Stage 1 and limited to my neck. If there is any sign of it having spread, they'll want to do scorched-earth treatment (Phase 3) while i"m still young enough to endure it.
Having had my "50" colonoscopy early (at 47) I was due for one next year, so seems worth moving up, particularly since this lymphoma has a tendency to appear in polyps in the colon (and I had 4 pre-cancerous ones last time). And Endoscopy of throat and stomach seems no biggie either.
The balancing act is between:
- Doing what's required now to maximize chances it does not re-occur--but not over-treating
- Envisioning what treatments they've "saved" for if it comes back
- My current and projected future tolerance for treatment.
- Knowing that recurrence treatments keep getting better
Lyrical: Hip Jab (Bone Marrow Aspirate and/or Biopsy)
BEFORE
Had a nice railfan ride from home to North Station (train) and Kenmore (light rail). All checked in, co-paid, wrist-banded, release signed, and ready to show them my clean undergarments.
Had a nice railfan ride from home to North Station (train) and Kenmore (light rail). All checked in, co-paid, wrist-banded, release signed, and ready to show them my clean undergarments.
DURING
The whole thing was less than an hour. I laid on my side like a seminude painters model, elevating and exposing my right posterior superior illiac crest veiled only in an area of thin flesh swabbed in iodine.
First came 3 numbing needles, then my tough bone bent the first biopsy needle (straight outta Superman). Oncologist had predicted that as a young* patient my bones were going to be tougher than the osteoporosis set she usually deals with.
The whole thing was less than an hour. I laid on my side like a seminude painters model, elevating and exposing my right posterior superior illiac crest veiled only in an area of thin flesh swabbed in iodine.
First came 3 numbing needles, then my tough bone bent the first biopsy needle (straight outta Superman). Oncologist had predicted that as a young* patient my bones were going to be tougher than the osteoporosis set she usually deals with.
But being generously numbed, I felt a only a "bone rubbing" feeling resolve into a "pointed pressure" feeling as a second needle found it's groove and reached its mark, and then a knuckle-crack kind of "spine just about to crack" pain as the marrow was sucked out. Shudder.
AFTER
AFTER
4x4" bandaid; don't shower/keep dry for 24hrs, and when the numbing wears off it will feel like an oncologist kicked me.
AFTER AFTER
Well, it feels more like an oncologist whacked me with a small pipe.
Which is basically what happened.
*If you want to feel young when you're over 50, hang out with oncologists
Friday, July 21, 2017
Predictical: Hoping to draw 2 Aces; Testing to prove a reliable Stage 1
There is possible superbly good news out there, that we're going to pursue before we start chemo.
As all other tests keep coming back either empty (of cancer) or strongly healthy (my blood tests), we're making a bayesian inference that there's a chance that I'm one of the very rare patients whose lymphoma may turn out to be provably "Stage 1"--really, truly, confined to just my neck and not already circulated and hiding beneath the threshold of a CAT scan.
First and Second Opinion doctors agree: it is worth seeing if, through the next two tests, we can build a case that I'm unusually healthy.
It's like God wrote my story on 5 poker cards*, laid the hand face down, and I have to pay to turn each card over, trying to beat 4 Kings:
Card 1: 2 of Clubs, Mantle Cell Lymphoma. Most stories end in Stem Cell agony.
Card 2: Ace of Clubs, nothing detected in CAT scan
Card 3: Ace of Hearts, repeatedly great blood tests (including re-tests and new tests yesterday)
So, the narrative of "regular" MCL has weakened and there's a narrow path to very rare single-node MCL. As seen below, First and Second Opinion are that I should keep drawing cards in tests rather than going straight into Chemo:
Card 4: ? Marrow test. Anything but an Ace and I stop drawing and go to Chemo
but if an Ace, then I can persuade my insurance company they should pay for Card 5
Card 5: ? PET Scan (most MCL patients it isn't worth drawing, for me to Ace this, the PET must light up only the one known-cancerous lymph in my neck)
Dana-Farber Cancer Institute just replied with their opinion about whether I should get 2nd opinion now, or wait until the threshold of ASCT. Their answer, was "yes" based on the chance that I might be one of those very rare people who really, truly, had lymphoma only in one place (Stage 1).
*it is important that the hand not be a random deal, but rather a story written in cards that I'm trying to uncover.
As all other tests keep coming back either empty (of cancer) or strongly healthy (my blood tests), we're making a bayesian inference that there's a chance that I'm one of the very rare patients whose lymphoma may turn out to be provably "Stage 1"--really, truly, confined to just my neck and not already circulated and hiding beneath the threshold of a CAT scan.
First and Second Opinion doctors agree: it is worth seeing if, through the next two tests, we can build a case that I'm unusually healthy.
It's like God wrote my story on 5 poker cards*, laid the hand face down, and I have to pay to turn each card over, trying to beat 4 Kings:
Card 1: 2 of Clubs, Mantle Cell Lymphoma. Most stories end in Stem Cell agony.
Card 2: Ace of Clubs, nothing detected in CAT scan
Card 3: Ace of Hearts, repeatedly great blood tests (including re-tests and new tests yesterday)
So, the narrative of "regular" MCL has weakened and there's a narrow path to very rare single-node MCL. As seen below, First and Second Opinion are that I should keep drawing cards in tests rather than going straight into Chemo:
Card 4: ? Marrow test. Anything but an Ace and I stop drawing and go to Chemo
but if an Ace, then I can persuade my insurance company they should pay for Card 5
Card 5: ? PET Scan (most MCL patients it isn't worth drawing, for me to Ace this, the PET must light up only the one known-cancerous lymph in my neck)
Dana-Farber Cancer Institute just replied with their opinion about whether I should get 2nd opinion now, or wait until the threshold of ASCT. Their answer, was "yes" based on the chance that I might be one of those very rare people who really, truly, had lymphoma only in one place (Stage 1).
[blogger's oncologist] is very good and assuming that [blogger] has advanced stage disease, we would do exactly as she recommended including stem cell transplant and there is new data to support giving rituxan for 3 years as maintenance after transplant.
If [blogger] had Stage I disease (marrow and PET negative) which is very rare, we would treat differently. If he wanted a second opinion, we could get him in here quickly and anyone in the lymphoma group could see him.
Based on this, we will delay Chemo start for 1 week while we do the marrow test and build a case-for-building-a-case that my cancer is rare and easy. If that case falls apart, I'll have only lost about 2 weeks on chemo's start. In fact, [blogger's wife] just contacted our First Opinion doctor and she agrees with Dana-Farber:
[blogger's oncologist] was very receptive, and agrees with everything we were asking for. She did mention that part of the reason she was moving so quickly is that [blogger] seem[s] so anxious to do so! Also, the low white blood count in the original CBC had inclined her to think the cancer was more widespread. But she had just received the results of yesterday's tests, and was surprised to see that everything was normal and healthy. So now she herself would be more inclined to wait and do more tests.My marrow test (stab me in the back with a giant needle into my pelvis) remains scheduled for Wednesday. We are not really expecting the marrow to be positive, but if it actually were negative (increasing the chance that my cancer was a very rare easy Stage 1 case)we have then built the case to my insurer that it was worth their while to pursue the unlikely case that mine was a "reliable" Stage 1.
It was a very nice call, and [we] appreciate so much how receptive [first-opinion oncologist] was, and willing to work with us. And she feels that we have time to do this extra investigation.
She also feels that she won't have any trouble getting the PET Scan approved from [my health insurer], especially once it becomes clear it would alter the treatment.
My PET scan was cancelled by my insurance company for cost reasons (they had me do a less-accurate CAT, because nobody was expecting it to be negative). But now that the CAT was negative, at least Dana-Farber thinks it worth trying to prove that I really am cancer-negative everywhere beyond my right neck.
Oh please, oh please, oh please!
Oh please, oh please, oh please!
It is all a bet that we'd be soooo confident that I'm a "very rare" very good case that I'd actually do the "something different" and save everybody a lot of time, treasure, and trouble.
*it is important that the hand not be a random deal, but rather a story written in cards that I'm trying to uncover.
Lyrical: 9 month timeline, then 3 months out of commission
Here is an analogy that gave me comfort and helped explain my condition to my co-workers:
Think of my cancer as having a 9-month gestation, and a due date around Christmas, followed by a 3 month medical leave.
I am making my announcement at lymphoma's Month 3, and will have it for 6 months more before I am delivered of it (It's a boy, and right now, about the size of 3 grapes*). Only odd thing is that it will shrink in size from a blob now to just a few undetectable cells on the due date.
Good news: the next six months of chemo will be (almost) like that happier expectant waiting, punctuated by monthly doctor's visits. I should be able to live a mostly-normal life while the cancer shrinks back to a few cells.
Bad news: We are essentially certain that as delivery is around Christmas, immediately after, I will enter a miserable, life-threatening phase requiring 3 weeks' hospitalization and 10 weeks' recovery at home (as I work off the chemo toxins, rebuild my immune system, and regain the ability to focus mentally)
This is the current calendar:
April/May/June = Initial growth
July/Aug/Sep = Phase 1 of Immune Therapy (easy Chemo)
Oct/Nov/Dec = Phase 2 of Immune Therapy (kinda easy Chemo)
Dec 25th: Cancer at undetectable levels
Jan = Remove stem cells, wipe out immunes & hairs, fear *any* germ, put back, re-grow
Feb/Mar = Recover at home; regrow hair & gut; clear chemo brain; regain workplace skills
April = start living at least 10 more years.
* or maybe 3 slightly smaller, say, blueberries, having grown at 1 berry per month since April 1st.
Think of my cancer as having a 9-month gestation, and a due date around Christmas, followed by a 3 month medical leave.
I am making my announcement at lymphoma's Month 3, and will have it for 6 months more before I am delivered of it (It's a boy, and right now, about the size of 3 grapes*). Only odd thing is that it will shrink in size from a blob now to just a few undetectable cells on the due date.
Good news: the next six months of chemo will be (almost) like that happier expectant waiting, punctuated by monthly doctor's visits. I should be able to live a mostly-normal life while the cancer shrinks back to a few cells.
Bad news: We are essentially certain that as delivery is around Christmas, immediately after, I will enter a miserable, life-threatening phase requiring 3 weeks' hospitalization and 10 weeks' recovery at home (as I work off the chemo toxins, rebuild my immune system, and regain the ability to focus mentally)
This is the current calendar:
April/May/June = Initial growth
July/Aug/Sep = Phase 1 of Immune Therapy (easy Chemo)
Oct/Nov/Dec = Phase 2 of Immune Therapy (kinda easy Chemo)
Dec 25th: Cancer at undetectable levels
Jan = Remove stem cells, wipe out immunes & hairs, fear *any* germ, put back, re-grow
Feb/Mar = Recover at home; regrow hair & gut; clear chemo brain; regain workplace skills
April = start living at least 10 more years.
* or maybe 3 slightly smaller, say, blueberries, having grown at 1 berry per month since April 1st.
Thursday, July 20, 2017
Medical: MCL Stage 1 vs 3 Phase Treatment
Lots of progress today:
1) My Mantle Cell Lymphoma (MCL) appears "the usual"-- tests from here probe exceptions we don't expect to find (AIDS, Hepatitis, or immune, metabolic, or genetic complications). MCL is deceptive: goes away easily, but also came back easily.
2) I'm Stage 1 (no evidence of spread beyond neck area). A CAT scan showed all clear from clavicle to groin; this is good good, but unfortunately does not make treatment any less severe, since they assume that lymphomas spread in the blood (and they will still stab my hip bone to look for it in the marrow to disprove it there)
3) Chemo is like Scrooge's ghost visits: 3 different, ramping from pleasant to scary.
The mantle cells are B-type immune cells that surround the Germinal Center(s) in a lymph node (called out at lower left in this diagram of a lymph node). The immune system is divided into at least t-cells, B-cells, and Natural Killer cells. Lymph nodes are special organs where immune cells live and do their work.
1) My Mantle Cell Lymphoma (MCL) appears "the usual"-- tests from here probe exceptions we don't expect to find (AIDS, Hepatitis, or immune, metabolic, or genetic complications). MCL is deceptive: goes away easily, but also came back easily.
2) I'm Stage 1 (no evidence of spread beyond neck area). A CAT scan showed all clear from clavicle to groin; this is good good, but unfortunately does not make treatment any less severe, since they assume that lymphomas spread in the blood (and they will still stab my hip bone to look for it in the marrow to disprove it there)
3) Chemo is like Scrooge's ghost visits: 3 different, ramping from pleasant to scary.
- "RB" 2 half-day outpatient IVs 4 weeks apart; very mild; likely to shrink my neck lump to be cosmetically-invisible in 2 weeks.
- "RC" 2 half-day outpatient IVs 4 weeks apart; recent innovation with high success rates
- ASCT Stem Cell Transplant (bank my stem cells, wipe out immune system (& hair), regrow immune system from banked cells)
Requires 3-week hospitalization, total 3 months feeling sick
The problem is that while my tests look great, and RB-RC one-two is known to work great at eliminating MCL, and the higher the elimination, the longer before recurrence, RB-RC is so new (<2 yrs) that they don't really know if it is actually sufficient to keep MCL from coming back in 3 to 5 years (which RB alone was not) and only the misery of ASCT is known to keep it away 10+ years
Schedule Notes;
- Chemo starts next Wednesday (unless tests come back very abnormal)
- Will begin a process of "second opinion" during Phase 1, whose goal is to have "second opinion" style options when we're deciding on Phase 3
FAQ: What is a Mantle Cell?
The mantle cells are B-type immune cells that surround the Germinal Center(s) in a lymph node (called out at lower left in this diagram of a lymph node). The immune system is divided into at least t-cells, B-cells, and Natural Killer cells. Lymph nodes are special organs where immune cells live and do their work.
Lyrical: The CAT scan
Chillaxin for next 1.5 hours sipping a barium sulfate smoothie (banana) in the middle of a solid trio of medical appointments..
At 8:30a, ENT ripped band aid off at post opp appointment and cleared me for swimming. Advised no sun to minimize the current duelling scar look.
At 8:45 Oncologist office called to ask "can you be here (Fenway) in an hour?" (Yes, though a bit dicey given traffic (and a Sox day game?). 9:45 prep begins. Sip Barium drink (X-ray absorbent contrast) 10a to 11:30a. Ten minutes on table. Elevator from Floor 1 to Floor 4 to see Oncologist at 11:45
Harvard-Vanguard doctor's offices are just down the street from Fenway Park and about 5 blocks from [Mr & Mrs Blogger's] first apartment in Brookline. People were already arriving at 9:45am for a 1:20pm day game as I pulled in to the garage. Amazing the prosperity of a country where people can spend all day celebrating an event of no cosmic significance.
Sox traffic would later delay [Mrs Blogger's] arrival, but she was there for the "what treatment will look like"discussion and the blood-drawing phase of the morning.
At 8:30a, ENT ripped band aid off at post opp appointment and cleared me for swimming. Advised no sun to minimize the current duelling scar look.
At 8:45 Oncologist office called to ask "can you be here (Fenway) in an hour?" (Yes, though a bit dicey given traffic (and a Sox day game?). 9:45 prep begins. Sip Barium drink (X-ray absorbent contrast) 10a to 11:30a. Ten minutes on table. Elevator from Floor 1 to Floor 4 to see Oncologist at 11:45
Harvard-Vanguard doctor's offices are just down the street from Fenway Park and about 5 blocks from [Mr & Mrs Blogger's] first apartment in Brookline. People were already arriving at 9:45am for a 1:20pm day game as I pulled in to the garage. Amazing the prosperity of a country where people can spend all day celebrating an event of no cosmic significance.
Sox traffic would later delay [Mrs Blogger's] arrival, but she was there for the "what treatment will look like"discussion and the blood-drawing phase of the morning.
Wednesday, July 19, 2017
Medical: PET Declined
Biopsy results (via phone): Officially Mantle Cell Lymphoma (MCL). Had a phone chat with Dr JG, the oncologist (her office felt bad about my PET being cancelled, below), and so she was willing to talk on the phone that (1) yes, as the revised cytology had also suggested, the surgical biopsy confirmed was Mantle Cell Lymphoma and thanks to the surgery, they had a big enough sample to say (2)it was of a kind that was relatively* slow growing**
My scheduled PET scan has been declined by Neighborhood Health Plan and cancelled. This stuff introduces so much delay--now I have to find a CAT scan instead (earliest offered is next Friday, not this as the PET was)
*It is of little comfort that someplace else there's a guy or gal whose MCL is growing faster than mine. From my standpoint, this is the fastest-growing cancer I've ever had.
**According to the Leukemia-Lymphoma Society fact sheet on MCL (pdf), this suggests I do not have the blastoid version (for which prognosis is bad). I have the regular version described as:
My scheduled PET scan has been declined by Neighborhood Health Plan and cancelled. This stuff introduces so much delay--now I have to find a CAT scan instead (earliest offered is next Friday, not this as the PET was)
*It is of little comfort that someplace else there's a guy or gal whose MCL is growing faster than mine. From my standpoint, this is the fastest-growing cancer I've ever had.
**According to the Leukemia-Lymphoma Society fact sheet on MCL (pdf), this suggests I do not have the blastoid version (for which prognosis is bad). I have the regular version described as:
There has been truly remarkable progress in the treatment
of MCL over the last decades with a near doubling of
overall survival, even though relapses are still common.
Most patients respond well to initial chemotherapy (with
or without stem cell transplantation). However, for most
patients, the disease eventually progresses or returns.
Treatment resistance may develop, which means that a
patient may become less responsive to chemotherapy.
The median progression-free period for patients with MCL
is 20 months and the median overall survival is between
5 and 7 years. ... Researchers continue to
look for therapies that will prolong remissions and extend
survival in patients with MCL. Outcome data cannot
determine how any one person will respond. Talk to your
doctor for more information
Lyrical: Knock, Knock
Working on this one:
Knock Knock
Who's there?
Cancer
Cancer who?
Can't surprise me, I had a biopsy.
...
Biking to work was great yesterday. Work was great too. Smiled so hard I nearly busted a suture. Got caught in a blue-sky downpour as I biked home with the boss (he to Arlington MA, me to Medford MA; our route overlaps for about 5.5mi out of 6mi)
Knock Knock
Who's there?
Cancer
Cancer who?
Can't surprise me, I had a biopsy.
...
Biking to work was great yesterday. Work was great too. Smiled so hard I nearly busted a suture. Got caught in a blue-sky downpour as I biked home with the boss (he to Arlington MA, me to Medford MA; our route overlaps for about 5.5mi out of 6mi)
Tuesday, July 18, 2017
Lyrical: Why Anonymous
Tuesday dawns with three reasons this blog should not fall into the hands of Facebook friends or pre-employment screens:
1) The Squatty Potty
2) Medical Marijuana
3) Recumbent bicycle
I am such a 50-year-old white guy from Massachusetts, it is not even funny, although I suppose it is funny given my childhood.
My Childhood.
It is important for you to know that I grew up in the fabulously diverse "new town" of Columbia, Maryland, a town that voted overwhelmingly for McGovern at a time America was voting overwhelmingly for Nixon. Besides me, Daniel Owens was the *only* other kid in my grade at Bryant Woods Elementary School whose parents were known to be voting for Nixon, and after the election, the Owens' quickly fled to Kansas City.
For my support of Nixon, I suffered the ultimate 2nd grade humiliation: being pushed out of line for recess, with the words "Ewww, Nixonnn"* Only upside, by High School, I was made Captain of the It's Academic Team and received the Sons of the American Revolution Bronze Good Citizenship Medal basically because I was the only smart kid at Wilde Lake High who submitted to regular haircuts (or a least the competition was thinned to me vs Michael Deets).
For the record, I haven't actually *used* any of the three, above, but it may come to that.
This *is* the part where I'm doing things out of my comfort zone, and trying to get things you consider normal back into my comfort zone.
So, as to the above:
1) Posture does matter and has produced positive outcomes
2) My sister-in-law, the modern mystic, has given me moral clearance
3) Rest easy, I was kidding about recumbent cycling, though it may come to that.**
Specifically
1) I'm pretty sure we've beaten the combined effects of general anesthesia & antibiotics
2) I have added hemp oil to my diet and am dreaming of opening the first Pontifical Marijuana farm.
3) I will be trying to bike to work today.
* In fact, I remember being pushed out of line, by John Richardson, to be precise, with the same clarity that Marcia Brady remembers smack, Oh My Nose!
**More likely, I'd get an electric assist cargo bike.
1) The Squatty Potty
2) Medical Marijuana
3) Recumbent bicycle
I am such a 50-year-old white guy from Massachusetts, it is not even funny, although I suppose it is funny given my childhood.
My Childhood.
It is important for you to know that I grew up in the fabulously diverse "new town" of Columbia, Maryland, a town that voted overwhelmingly for McGovern at a time America was voting overwhelmingly for Nixon. Besides me, Daniel Owens was the *only* other kid in my grade at Bryant Woods Elementary School whose parents were known to be voting for Nixon, and after the election, the Owens' quickly fled to Kansas City.
For my support of Nixon, I suffered the ultimate 2nd grade humiliation: being pushed out of line for recess, with the words "Ewww, Nixonnn"* Only upside, by High School, I was made Captain of the It's Academic Team and received the Sons of the American Revolution Bronze Good Citizenship Medal basically because I was the only smart kid at Wilde Lake High who submitted to regular haircuts (or a least the competition was thinned to me vs Michael Deets).
For the record, I haven't actually *used* any of the three, above, but it may come to that.
This *is* the part where I'm doing things out of my comfort zone, and trying to get things you consider normal back into my comfort zone.
So, as to the above:
1) Posture does matter and has produced positive outcomes
2) My sister-in-law, the modern mystic, has given me moral clearance
3) Rest easy, I was kidding about recumbent cycling, though it may come to that.**
Specifically
1) I'm pretty sure we've beaten the combined effects of general anesthesia & antibiotics
2) I have added hemp oil to my diet and am dreaming of opening the first Pontifical Marijuana farm.
3) I will be trying to bike to work today.
* In fact, I remember being pushed out of line, by John Richardson, to be precise, with the same clarity that Marcia Brady remembers smack, Oh My Nose!
**More likely, I'd get an electric assist cargo bike.
Monday, July 17, 2017
Lyrical:
Feeling good this morning--incision area less swollen. Had a great visit from my brother and his family yesterday afternoon. Back to work with a 7:30am global call.
I did notice that (and have blamed general anesthesia) that I sometimes can't come up with proper nouns that I would have, in the past, come up with immediately. Hopefully this will mostly be a matter of clearing the GA from the corners of my brain.
I did notice that (and have blamed general anesthesia) that I sometimes can't come up with proper nouns that I would have, in the past, come up with immediately. Hopefully this will mostly be a matter of clearing the GA from the corners of my brain.
Sunday, July 16, 2017
Lyrical-Medical Post-Op
We're at about the 48 hour point after surgery, which is when it get hard: the thin streak of minor infection dribbles down the same part of my neck where healthy lymph drains into the throat. I'm on antibiotics so my gut bacteria (that are known to boost mood) are wiped out (shoulda banked them so I could do an, ahem, autologous transfer). Golly, I bet I had awesome gut flora. Hopefully they're hiding in my appendix, and will swiftly re-colonize next week.
With lots of tests to do on a big sample, we were warned that it could be days before we have results.
The lump in my neck seems about the same size as ever (wasn't expecting it to get smaller from a biopsy), and has an incision the length of a the smallest size Band-Aid that came in the variety boxes of our youths.
The stitches are actually under the skin, in the layer of "curtain muscle"from the bottom of the jaw to top of the collar bone (the vertical strands that pop out when you cheese-smile exaggeratedly) .
Usually, I think of surgical stitches as being like upholstery seams (particularly because they are done with upholstery hooks): tough cords hooked through thick leather to hold in all the stuffing (while one's innards sort things out). This is not the case on me.
With the structural work being done in a deeper layer, the skin suture only needs to hold itself together. To hold it, the surgeon applied what look like (from a distance) 1"x 1/4" strips of toilet paper, overlapped to form a white version of that "Band-Aid, Small"
It is a bit thicker than toilet paper and it is impregnated with something sticky and water-repellant, so you can also picture a fiberglass patch soaked in resin.
The visual effect is to suggest that I cut myself while shaving.
With lots of tests to do on a big sample, we were warned that it could be days before we have results.
The lump in my neck seems about the same size as ever (wasn't expecting it to get smaller from a biopsy), and has an incision the length of a the smallest size Band-Aid that came in the variety boxes of our youths.
The stitches are actually under the skin, in the layer of "curtain muscle"from the bottom of the jaw to top of the collar bone (the vertical strands that pop out when you cheese-smile exaggeratedly) .
Usually, I think of surgical stitches as being like upholstery seams (particularly because they are done with upholstery hooks): tough cords hooked through thick leather to hold in all the stuffing (while one's innards sort things out). This is not the case on me.
With the structural work being done in a deeper layer, the skin suture only needs to hold itself together. To hold it, the surgeon applied what look like (from a distance) 1"x 1/4" strips of toilet paper, overlapped to form a white version of that "Band-Aid, Small"
It is a bit thicker than toilet paper and it is impregnated with something sticky and water-repellant, so you can also picture a fiberglass patch soaked in resin.
The visual effect is to suggest that I cut myself while shaving.
Saturday, July 15, 2017
Medical: Immune Therapy
I have drawn a lot of comfort from knowledge I gained at past evenings attending Harvard Science in the News (SITN) program, where doctoral candidates describe what they're working on in ways that the public can understand.
Here is an article I am reading from the science in the news blog:
http://sitn.hms.harvard.edu/flash/2017/cancer-immunotherapy-fighting-fire-fire/
Some readers know that Matt Cam'n is in a clinical trial where CAR-T is being tested on his hard lung tumor. The article above links to this one on why that poses an extra challenge for immune therapy.(hard tumors are big, have relatively poor surface area, and create a local environment hostile to immune cells (t-cells).
http://www.genengnews.com/gen-articles/supplement-treating-solid-tumors-with-car-t-cells/5912
Here is an article I am reading from the science in the news blog:
http://sitn.hms.harvard.edu/flash/2017/cancer-immunotherapy-fighting-fire-fire/
Some readers know that Matt Cam'n is in a clinical trial where CAR-T is being tested on his hard lung tumor. The article above links to this one on why that poses an extra challenge for immune therapy.(hard tumors are big, have relatively poor surface area, and create a local environment hostile to immune cells (t-cells).
http://www.genengnews.com/gen-articles/supplement-treating-solid-tumors-with-car-t-cells/5912
Friday, July 14, 2017
Lyrical: I cant help with your band saw today
K met me once they'd taken the mask off and moved me to a chair. When we were ready to go, K went to get the minivan, and a nursing aide wheeled me out. Came home and took a dreamless drug-fueled nap, followed by an espresso with coconut milk.
I judge it went well and feel great, with occasional bits of dizzy or sleepy, so I will not be driving, piano-moving, or helping you with your band saw.
In the area of my neck, I do feel the occasional "poke" it hurts if I take big bites of food.
I judge it went well and feel great, with occasional bits of dizzy or sleepy, so I will not be driving, piano-moving, or helping you with your band saw.
In the area of my neck, I do feel the occasional "poke" it hurts if I take big bites of food.
Lyrical: Neck Biopsy
Was let into surgery early. Whole experience was a lot like getting into Disney at the "rope drop"
Once you've paid the enormous price of admission the odds are pretty good that you'll mostly be hanging out with nice people.
Mostly I was working on a surgery based comedy routine the whole time with the anesthesiologists, the nurse, the clerks and the surgeon. The effects of anesthesia I judge to be roughly equivalent to 7 glasses of champagne, except I felt them in my feet instead of in my quadriceps.
So far the post surgery pain is minimal (or well managed by oxy)
Even with the offer of fifty bucks to the resident student** I was unable to secure the Cosmetic upgrades I was looking for.
I judge the lump looks a little bit smaller (though that was not the purpose of the biopsy, which was exclusively to get a large enough sample to please the cytologists) and the incision is no more than 2 inches.
With more than 70 kinds of cancer in the leukemia & lymphoma family, they need lots of tissue because they essentially use different stains to tell the different cancers from each other. Maybe I'm wrong but I'm picturing 70 different little sample slides* each with its own stain, and if the color lights up those, cells then I would be deemed positive for that variety or that marker that the stain stuck to.
*i picture Microsope plates like the 1/2" x 2" ones from 7th grade biology
I will overlook her comment about that being "garage pricing"
Once you've paid the enormous price of admission the odds are pretty good that you'll mostly be hanging out with nice people.
Mostly I was working on a surgery based comedy routine the whole time with the anesthesiologists, the nurse, the clerks and the surgeon. The effects of anesthesia I judge to be roughly equivalent to 7 glasses of champagne, except I felt them in my feet instead of in my quadriceps.
So far the post surgery pain is minimal (or well managed by oxy)
Even with the offer of fifty bucks to the resident student** I was unable to secure the Cosmetic upgrades I was looking for.
I judge the lump looks a little bit smaller (though that was not the purpose of the biopsy, which was exclusively to get a large enough sample to please the cytologists) and the incision is no more than 2 inches.
With more than 70 kinds of cancer in the leukemia & lymphoma family, they need lots of tissue because they essentially use different stains to tell the different cancers from each other. Maybe I'm wrong but I'm picturing 70 different little sample slides* each with its own stain, and if the color lights up those, cells then I would be deemed positive for that variety or that marker that the stain stuck to.
*i picture Microsope plates like the 1/2" x 2" ones from 7th grade biology
I will overlook her comment about that being "garage pricing"
Lyrical: Surgical departures board
There's a color coded arrivals/departures board in the waiting room on floor S. Says "La,F" (me)* is projected to start at 10:45 and end at 12:15
*Last name, First
After I am done I sleep with apparatus for an hour then Mrs. picks me up.
...and we are running early. Request for cosmetic upgrades denied. Incision already marked. Doc is great.
*Last name, First
After I am done I sleep with apparatus for an hour then Mrs. picks me up.
...and we are running early. Request for cosmetic upgrades denied. Incision already marked. Doc is great.
Thursday, July 13, 2017
Surgery Timetable
Biopsy Surgery tomorrow at Mass Eye & Ear
12:01a Pre-op fast: No food or drink
08:45a Arrive by subway
10:45a Operation
Afternoon Kateryna picks me up
Shouldn't leave a guy hanging with stitches under only his right chin, right? So maybe a neck tuck / wrinkle reduction while they're at it to balance things out. Can't hurt to ask.
12:01a Pre-op fast: No food or drink
08:45a Arrive by subway
10:45a Operation
Afternoon Kateryna picks me up
Shouldn't leave a guy hanging with stitches under only his right chin, right? So maybe a neck tuck / wrinkle reduction while they're at it to balance things out. Can't hurt to ask.
Wednesday, July 12, 2017
CAT, PET, MRI
Tomography, is literally any "image slicing" technique (to make 3Ds from 2D slices),and for this always requires a machine like a big donut, whether CAT, PET, or MRI. CAT and PET are just donut detectors. MRI's donut also hides a superconducting magnetic coil.
CATs use X-rays and got their name because they were the first to Compute their Axial Tomography, so they got the cool name to differentiate from flat plate X-rays (which was just about the only "radiology" back then). That spinning noise is you hear (when in them) is the x-ray emitter and x-ray detector (180deg apart) chasing each other around the donut.
MRI uses magnetic resonance (magneto-radio stuff) and hums harmonically while imaging, and the cryo-pumps sound like tropical birds.
PET uses positrons (antimatter electrons; an electron-sized particle with a positive charge) from a decaying radioactive tracer, but since antimatter quickly annihilates when it hits matter, the detectors detect one of a pair of gamma rays that result from the annihilation. It is really about picking the tracer for what you want to "see happening". I'm pretty sure this means that the PET machine is just a passive camera, and all the radiation used will be actually coming entirely from tracers injected *inside* me and not beamed in by the machine (CAT uses a mix of x-rays beamed through and tracers radiating out)
Flourine 18 gets drawn into cells with high glucose uptake (the brain, liver & cancers), then gets stuck, then decays, emitting its positron, triggering the gamma rays that say "glucose is being drawn here" (thus calling out the cancers).
By the way, my current diet is near-zero carb, no milk or red meat, and low protein (aka high fish, eggs, nuts & oils) so as to starve the bad guys of the glucose they crave. Brains hare happy switching to ketosis (burning fats), but cancer is dumb and just wants the sugar.
PET
Oncologist already on it: PET scan set for Friday Jul 21 2:30p @ Beth Israel Deaconess*
[Edit: and on waiting list for sooner]
*Only in America: a Jewish-Methodist hospital. Beth Israel founded by Jewish community in 1916, and New England Deaconess having Methodist Deaconesses as its founders in 1896.
[Edit: and on waiting list for sooner]
*Only in America: a Jewish-Methodist hospital. Beth Israel founded by Jewish community in 1916, and New England Deaconess having Methodist Deaconesses as its founders in 1896.
Medical: Cancer Stages
Today I learned how cancer stages work:
I know that I'm at least Stage 1 (duh), and that my tongue base and tonsils are contiguous to the lump and also 'iffy' (and so are nearby lymphs). Not sure if that's contiguous enough to still be Stage 1. We also don't know if they "have it" or are just inflamed because they're working extra hard. I would not be surprised if they call it "Stage 2"
After meeting the Oncologist next week (July 19) I will likely be referred for a PET scan to look for it in the "whole rest" of my body. It could be hiding in lymphs or other "internal" places. If those are below my diaphram, that'd be Stage 3.
So far, the good news is 3-part:
I know that I'm at least Stage 1 (duh), and that my tongue base and tonsils are contiguous to the lump and also 'iffy' (and so are nearby lymphs). Not sure if that's contiguous enough to still be Stage 1. We also don't know if they "have it" or are just inflamed because they're working extra hard. I would not be surprised if they call it "Stage 2"
After meeting the Oncologist next week (July 19) I will likely be referred for a PET scan to look for it in the "whole rest" of my body. It could be hiding in lymphs or other "internal" places. If those are below my diaphram, that'd be Stage 3.
So far, the good news is 3-part:
- MRI showed brain was clear
- Cytology (cell exam) says it isn't from elsewhere
- ALL blood/metabolic tests so far suggest all other organs are healthy (and that's how I feel, too)
Not live-blogging the Xmas Letter
For some, Facebook is just live-blogging their Christmas Letter.
Got it? Bad news here. Side-hugging beautiful people there.
Got it? Bad news here. Side-hugging beautiful people there.
Lyrical: Working Title
Blog names not chosen
- Blogphoma
- Lymphatic
- Bacon from Lymphoma
- [real name]
- Vitreous Humor
- Sick Jokes
- Lymphocyte visit
- ..two others I can't recall
Massachusetts General Anesthesia
Friday's biopsy to sample the core of my macaroon-sized lump on my right neck will be at Mass Eye & Ear Hospital, and will be my first general anesthesia since I was 12 and having 6 teeth pulled in advance of braces.
At the c. 1978 dental extraction, I recall the dentist taking advantage of the Nitrous Oxide to make his puns seem better than they were. Cheater.
Free product idea for Worthington Cylinders: Balloon Time product line should include an N2O cylinder to address Embarrassing Parent, Obvious Magician, and Scary Clown.
I find out Thursday when my surgery will be on Friday.
At the c. 1978 dental extraction, I recall the dentist taking advantage of the Nitrous Oxide to make his puns seem better than they were. Cheater.
Free product idea for Worthington Cylinders: Balloon Time product line should include an N2O cylinder to address Embarrassing Parent, Obvious Magician, and Scary Clown.
I find out Thursday when my surgery will be on Friday.
Lyrical repurposing
This was a blog that I started back in 2006, originally intended to merge my life with whatever "the world" was busiest doing that day. It was Big Data avant la lettre.
I've revived it so that I can relate updates as I move through the medical system, which is like working a second job.
To be blunt, I have been diagnosed with Lymphoma. I have a surgical biopsy on Friday so that they can get enough cells to tell which kind of Lymphoma I have (there are more than 70 kinds).
I will also try to catch you up on how I got here, from noticing the lump in April to first doctor's visit in May and diagnosis on Monday, July 10th. I have a lot of comedy material that I don't want just trapped in emails or texts.
For now a few bits of advice:
I've revived it so that I can relate updates as I move through the medical system, which is like working a second job.
To be blunt, I have been diagnosed with Lymphoma. I have a surgical biopsy on Friday so that they can get enough cells to tell which kind of Lymphoma I have (there are more than 70 kinds).
I will also try to catch you up on how I got here, from noticing the lump in April to first doctor's visit in May and diagnosis on Monday, July 10th. I have a lot of comedy material that I don't want just trapped in emails or texts.
For now a few bits of advice:
- don't ignore new lumps (I didn't)
- insist on moving quickly to next appointments (I didn't do this hard enough)
- take control of the quality of the onward referrals you get (I got a bad initial one)
- make sure your life insurance is up to date (mine is)
Lyrical Physical
Wednesday (today) I had my first physical in a while (4 years?), and first with Dr. G, my primary care physician. Technically it is a pre-operative physical, so it added these elements:
1) An EKG, which looks awesome, and ensures that I can take general anesthesia on Friday Should license it as a stock photo for what heartbeats on graph paper should look like.
2) A light-and-cone** peak up my ample nostrils to view my smooth and continuous septum. Verdict: perfect for intranasal tubes. So I got that going for me.*
You could have just taken out that Mary Poppins tape measure and said "practically perfect, in every way"
You could have just taken out that Mary Poppins tape measure and said "practically perfect, in every way"
* Hard to say which is more perfectly suited for being medicalized: the pencil sized vein in my left arm that even a rookie phlebotomist could score, or my open nostrils which just scream "intubate me"
**For gift registry purposes, note that I take a 4.2mm disposable cone to look into my ears and nose. And let's scoff at the Metric System enthusiasts who think that labeling the cones as either 2.7mm or 4.2mm is somehow easier than saying 1/8th or 3/16 inches.
Importance of Birthdays
At my primary care doctor for a physical:
Me: Good morning, Kim (medical receptionist)
Kim: How are you doing?
Me: I could tell you, but we'll have to confirm my birthday first.
Me: Good morning, Kim (medical receptionist)
Kim: How are you doing?
Me: I could tell you, but we'll have to confirm my birthday first.
Subscribe to:
Posts (Atom)
Day 1 of Ibrutinib
I took my first pill of ibrutinib today at 7am. The pill "wallet" (individual pills in individual "blisters" on a 4-we...
-
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...
-
I'm a little embarrassed to say that finishing post-transplant immunotherapy happened in July and I failed to blog about it. It was Ju...
-
My Liver biopsy was "unremarkable" nothing suggested a cause for my trouble. I stopped worrying and will let "tincture of ti...