Medical: On a Benda

I am doing really well. The worst part of Bendamustine chemo today was the needle stick and leaving my USB charger there.* There was a little bit of irritation as the injection progressed, but not much, and I was able to bike there (21 minutes door to door, vs 13 minutes by car** and 30+ by subway) and bike back to the office, do some work, write this blog and be set for going home.  Actual time in the chair was near-exactly an hour

2:10 arrive late; binge on water in the waiting area
2:25 called in; weight 181, at least 2 of which was water
2:30 request chemo room with a window***
2:35 pulse, blood pressure, O2, and temp taken
2:45 today's vein: the right cephalic vein (yesterday it was the left basilic vein)
2:50 Text Mrs Blogger that it isn't worth her coming, since I'll be done by 3:30
3:00 Bendamustine arrives from pharmacy****
3:10 Pumping begins
3:20 Pumping reaches its goal, but bag is not empty; nurse restarts
3:25 Bag empty, pump shuts off when the inflow line air bubble reaches the pump

* I thought I was very clever, using a surplus patient ID sticker to mark my personal belongings, but feel very stupid for actually leaving it there.
** and when you consider that Lyft may take 3 to 8 minutes to arrive, or that, in one's own car, parking can take another 5 mins (hunting in the patient garage) the bike is practically the dominant mode for getting there.
*** there's chemo boredom and then there's windowless chemo boredom
**** all this stuff costs so much that the Pharmacy won't ship it up to Oncology until they know you're there.

Medical: PET Results Exactly Match What We Believed

For all a PET scan costs, they should at least give you an 8 x10 glossy and a couple of wallet size.

Me? Just text.

The radiologist describes a 4.8cm x 3.5cm mass (the neck tumor), with a nearby 1.1cm (reads as cancer) and 0.9cm masses on left side that reads as a "maybe"  So, interestingly, not in tonsils or tongue (which had been an early concern)

It also describes an ill-defined mass in the base/start of the colon (the cecum ) which we've seen as a 2cm to 3cm mass in the colonoscopy, and a nearby lymph that was probably glowing because it drains that general area (it was not glowing hard enough to seem cancer in its own right)

And that's it.

Just the neck cluster and the gut tumor and no place else (there was a tiny 2mm calcified nodule in my lung too small to classify)

It remains that I'm lucky that it was not cecum-only (which would have eluded detection until Jan 2018 scheduled  colonoscopy) and unlucky that it was not neck-only (for which radiation therapy would have replaced ASCT)

Lyrical: Chemophila Morning

"Chemo is my friend"

These words were spoken to the chemo nurse by her very first patient in 1980. That nurse is Mrs Blogger's Mother's Identical Cousin, now retired (whom Babtsia, the older two girls, and I stayed with when I went to Los Angeles as a Jeopardy contestant in 2009).

On Saturday, as we lingered in the Walgreen's parking lot, hesitating before claiming the first of many prescriptions, Mrs Blogger and I had a wonderful call from her. Mostly it persuaded me that God has already worked my miracle through modern science, which has turned MCL from 3-5yr death sentence to 10+ year (and more) survivable in just the last 15 years.

I've been using the "Chemo is my friend" sentiment to try to visualize the chemo working. If psychosomatic powers can cause illness, I believe they can also cure illness.

I've always been highly suggestible illness-wise. Ask me if I have nausea, and my stomach will start to knot. Tell me about your itchy contacts, and I will start to cry. Ask if I have any allergic reactions, and I will feel myself blush.

So I have been visualizing my Rituxan-activated immune system as t-Cell Pac-Men devouring the B cells in my tumor. I also picture the Bendamustine blistering and exploding my tumor cells at the moment they try to divide.

The working title of this interior movie is "Chemo is my friend" or Chemophilia.

The happy thing is I believe it is working.

Before chemo, my neck had been tender particularly where the tumor has assumed a bullet shape as it forces itself down a lymphatic tube. As it stretched a coffee-stirrer-sized lymphatic tube into a finger sized lump, any place on the bullet tip was sore yesterday. Now it feels like the tumor has been driven back just enough to ease the worst of the tube-stretching pain.

I believe I am also experiencing the same thing with my mysterious hip pain, which I have recently connected to the ileo-cecal tumor found in the colonoscopy. Before yesterday, any walking or standing motion could trigger the little stab of pain. As I awoke this morning it has been hard to actually move enough to trigger that pain.

In both cases I picture that the tumor might have pulled back just 1%, but enough to be no longer pushing on the envelope of "regular me" around it. We actually are expecting the tumors to shrink 99.9% in the next 4 weeks (if the lump is a billion cells, that would leave me cosmetically cured but still in mortal danger with a million cells still there, and so still in need of many more rounds to drive it to zero, especially as the remaining cells are the mutants resistant to early rounds)

So depending on the shape of the remission curve, we could be expecting shrinkage of anywhere between 1% and 10% per day over the next 2 to 4 weeks. That is a happy thought indeed.

I will bike to work today, and think that the only thing that will keep me from biking home may be the Benadryl. We will install the bike rack on the back of the minivan against this contingency.

*From anatomy drawings it does appear that my gut tumor and my right hip pain are in basically the same location.  It ileocecal valve is in the groove of one's right hip, and my gut tumor was scoped right at the junction between the ileum (small intestine) and cecum (lowest part of the right ascending colon).

Lyrical: Chemophila

Chemo might not have gone well enough to say I loved it, but this fist phase mostly lived up to its Ghost of Christmas Past advance billing, so I couldn't resist the word play of Chemophilia.

The substitute Oncologist appreciates my jokes with audible laughter, so that is clear progress today.

But mostly it was boring. I would not be surprised if as much as 20% of the drear as one walks laps of the chemo ward (wheeling one's IV-on-pole) is actually just boredom dragging people's faces.

If you wanted to evangelize these people, offer free haircuts and a bit of conversation.

After an IV of Steroids, we began the big bag of Rituxan. As an immune therapy made in organisms, Ritxan has the potential for allergic reactions, and is dose-pumped in progressively faster flows, as they probe for a patient's limits. They found one (initially) on me.

At the 3rd or 4th step-up (while Benadryl-napping) I awoke with a small, new, unusual pen-poke sensation near my uvula. I reported it. Actually I was trying strange snorts and grunts to clear it, and asked Mrs Blogger to report it.  I earned myself a shut-off of the pump and an all-hands huddle like you might see on TV. (They don't want a throat reaction to mean my airways are closing.)

I was on drip-rate saline only until I could say I had been pain-free for 5 minutes solid. Took about 40 minutes for it to go away, and when Rituxan pumping resumed it was on the "baby steps" pace. But after several more step-ups, by the end of the bag they had reached today's target max.

The RN noticed that for the rest of the Ritxan, every time I saw her, I swallowed, testing my throat for the pain which never did return.

The Bendamustine went perfectly despite its mustard gas reputation for inflaming the veins. 

Tomorrow's Bendamustine-only session should be just 20 minutes of infusion sandwiched between 40 minutes of prep and pre-pills and 10 minutes of unhooking and au revoirs.

Written while downing a Vitamix slurry of coconut milk, veggie protein, greens, cilantro, wild blueberries, two eggs and plenty of hemp oil. Chased with a fresh ginger tea to ward off nausea.

Medical: At the all-you can eat Pharma Buffet

Via Pill in the minutes before Chemo Starts
Tylenol - to head off flu side effects today and the blood vessel inflammation*

Benadryl - as antihistamine (also anti-inflammation)
Fenadine - generic Allegra, also as antihistamine / anti-allergy

Zofran - Anti nausea

Via Intervenous Today
Steriods - a steroidal anti-inflammatory, also to fight the inflammation of either Ritxan or Benda.
Rituxan - the antibodies to turn my immune system on its own B-cells (today)
Bendamustine - (half dose) The(mild) poison that attacks fast-dividing cells

Later today via pill (and for the next year)

Acyclovir - an anti-viral, to prevent the suppression of my immune system from allowing old Chicken Pox to re-emerge as Shingles

Tomorrow
Bendamustine - Second half dose, injected into a different vein to limit irritation.

The idea is that my cancers is the only tissue that is attacked by both chemicals they are giving me.

Rituxan 

• causes all CD20+ B cells to be attacked by other immune cells
• which is a good chunk of my immune system
• hence the side effects of allergic reactions and vulnerability to cold/flu/etc

Benda 

• a chemical attack all fast-dividing cells 
• like the lining of my throat and gut (but mostly spares hair follicles, somehow)
• hence the side effects of nausea (if the gut can't take it) and irritation anywhere it goes

Right now, I dread the Zofran because "anti-nausea" easily transforms into "pro-constipation"

* I was excited to learn that any chemo drug with "must" in its name, such as tomorrow's Bendamustine, is a derivative of WWI Mustard Gas, which, you'll recall Great Uncle Duffield Swan was hit with in the Great War.  Mustards are blistering agents, so yeah, inflammation, particularly of the blood vessels at the point of infusion, is a known side effect.

I've been calendared for a port in my chest, implanted under the skin, that will deliver September's chemo straight to a big vein (more dilute) so as to lessen inflammation.

Lyrical: Get a healthcare proxy on file

This marks the first deployment of the Medical Proxy I signed back in 2005 and am happy to not have needed to update. Mrs Blogger is primary, non-blogger older brother is secondary. Mass-resident brother in law is 3rd.

Medical: Today is Chemo Day 1: Immunotherapy

Arrival time 10:15a at Kenmore (the Fenway-proximate neighborhood, not the appliance brand). I did a lap swim this morning in what may be my last time swimming for 10 months.

Children are off at college visits (Barnard/Columbia), ballet school (8 hrs by car to Chautauqua NY), sailing (via MBTA subway), and cousins' in Melrose MA, respectively (the youngest may help drop me off).

Mrs. Blogger will join me because there are so many process and care questions that need answering, either by prototyping the process today or getting the question answered.

Medical: What a PET scan is like.

Somewhere in Woburn MA, there is a nuclear facility that ships radioactive Fluorodeoxyglucose (FDG) twice a day to Beth Israel Deaconess.  The amount is determined by the number, timing, and bodyweight of all PET scans each half day.

All things being equal, they will have to make twice as much FDG that morning for the 2pm scan than for the Noon scan simply because half of whatever was available at noon will have undergone decay by 2pm.  It is just algebra, but still pretty impressive.

Dissolved in saline, FDG is shipped in a 40-lb lead-encased vial like this:

Carried in a shipping box like this:

Upon receipt, it is  loaded into a cross between Wall-E and a lead-lined floor buffer, like this:

It gets wheeled very slowly into your tiny waiting room. After prepping an IV, the technologist enters your weight into the screen.  Knowing the current time and potency (determined by half-lives since creation), the machine automatically infuses the same dose of radiation (about 10 chest x-rays), even though more and more fluid has to be injected as the day goes on because the fluid is loosing its radiation-per-liter.

After injecting you with your dose Then they tell you that you will have to wait 1 hour as your glucose-deprived body draws the FDG out of your blood and into the busiest cells--your cancer.

During that hour you are free to sit quietly in a lead-lined room with a heavy door. If you close the door, you'll notice a sign on the back that says:

PLEASE DO NOT TALK WHILE YOU WAIT

no cellphone calls

But, since the technologists have had to flee your radioactive self, there's nobody around to explain or enforce this rule. And since the door is extremely thick and heavy (a sandwich of 1/8th of lead between two planks of 1" thick solid wood) who's ever going to hear?  And actually, reception is pretty good, considering you're a T-mobile customer in a lead lined room.

When it is time, they ensure that your bladder is empty, and usher you into yet another room with a giant donut with a bed that slides you in and out.  In this case, a combined CT xray (orbiting around the donut to map your outlines) and the 90% of the rest of the donut which hides a cylinder of gamma-ray detectors. The computer will overlay the gamma ray hot spots onto the xray image.

Then, it looks pretty much like this:

Then the challenge is to lie still for 20 minutes as you radiate your gamma rays into the detector.  It seems like they took 4 sectional images at 5 minutes each (shoulders, chest, gut, and groin).

The hardest part was suspending my arms "above" my head (had I been standing).  Other than that, I should have napped.

I will get my results tomorrow.

Medical: Take your school to PET day

Mrs Blogger and our 9yr-old son will be driving me to my 2 PM's PET scan. I hope he will find it home-school educational.

Once you get past the atomic physics of it PET scans are kind of the simplest scans to understand:

1) My body is made "restful", neither eating anything in the last 18 hours that would spike glucose (fats and protiens only; no sugars/starches), nor any strenuous exercise in the last 48 hours that would deplete stored glycogen, muscle's "local supply" of glucose.  

2) I will be injected with a glucose molecule with a radioactive tag

3) The tagged glucose will be drawn to places that are "busy" despite my restful state (as I lie on a table)

4) As the radioactive glucose sends out radiation* that says "Glucose was here" a big donut gamma-ray detector pinpoints where it is coming from as I'm threaded in and out of the donut.

5) The constructed picture shows glucose hot spots.  The brain and liver are usually hot, but it is the "elswhere" hot spots that are telling. This person (SAMPLE, NOT ME) has was looks like lymphoma in their shoulders, gut and groin:

* The part that is not easiest to understand but is still super cool: Fluoride 18 loses a positron (a bit of antimatter with the mass of an electron, but with proton's +1 charge), which quickly smashes into an electron and they cancel their charges to zero and their masses muturally-annihilate into a puff of two gamma rays. The gamma rays pass out of me to be detected. The Flouride 18 (made fresh today, given a half life of just 109 minutes), turns into harmless, stable (but rare) Oxygen 18 (which you might call "heavy oxygen")

Lyrical: This is MCL caught early

Here we pause to contemplate how lucky I am that my MCL manifested on my neck. My college roommate passed along the thought of a colleague: "that's really early to catch MCL"

Looking at the pictures on Friday, I'd been thinking:

• I'm so unlucky MCL is going to be confirmed in my gut, ruining my "neck only" hopes

When an equally plausible interpretation (which I've now adopted) is

• I'm so lucky MCL was in my neck, or my gut MCL would only have been caught too late

Without the neck lump, I'd be doing nothing about the gut lump and yet I'm coming to the conclusion that the gut lump is the cause of a small, mysterious pain in my front right hip.

For about a month, maybe more, I have had local pain, and maybe only noticed once or twice a day, usually during my first steps out of bed. It feels like it is the size of a child's marble, and have always manifested in the same place (plus or minus within a volume no larger than handball).

Sometimes it feels like it is on the bone (right in the "scoop" of the hip's anterior superior illiac crest), sometimes it feels like a "I jogged too hard" muscle strain, and sometimes it feels like a stomach cramp. But it has been there, repeatedly, very localized for at least a month.  Maybe two or even three.  It is the kind you say to yourself "there's my hip thing" and think no more of it (and for me, particularly, because I've been focused on my neck)

My hypothesis is that the hip pain is a direct, singular symptom of the gut tumor and I'd be ignoring it if it were not for my neck lump.

The neck is just about the best possible--most easily noticed and seen--concentration of lymph tissue any of us have.  Groin and armpits are second most obvious.  Non-obvious is the gut. I'm very blessed that it was not "gut alone" (Though my 5 year re-colonoscopy is due in January 2018..that'd have given the tumor way too much time before being found)

There's no way I'd be blogging about a hip cramp, or asking your prayers.

Or recommending that you check your

• scheduled colonoscopy
• long-term and short-term disability insurance
• life insurance policy

based on a hip cramp alone

Lyrical: It takes one good sleep

Looking inward, it seems I'm at peace with my situation. Bad news seems to take about 18 hours to digest (assuming 8 of them are spent sleeping).

And really, it is not that bad.  It just isn't as good.

I was really looking forward to radiation therapy; snuggling my neck right up against a gamma ray source and feeling the warm glow rip apart fast-dividing cells at a molecular level. This was a satisfying image for me. As satisfying as spritzing a yellow jacket with hornet spray.

Actually, it was going to be as satisfying as finding the hornets' nest and standing 20 feet away while streaming the spray right in that bottom hole.  As the hornets dropped out, still glistening with spray, smelling of poison, and twitching just a little, I'd have said "take that, cancer."

Autologous Stem Cell Transfer seems more like running a hornets nest over with a lawn mower. Perhaps 100% effective, yet more like an accident, with more collateral damage, and more like I'm going to run away screaming like a girl and flailing my arms wildly--uh, not that that's ever happened to me.

The nice thing about Mantle Cell Lymphoma is that treatment is no mystery and mostly works.

God willing, I'm pretty well set to outlive my Term Life Insurance, which is "up" in 2029 (They tell you the best deal is to sign up for a policy that gets your youngest child through college.)

Of course, had I known that outliving my term policy was going to be a central life goal, I really would have signed up for a policy extending to 2039, or heck, 2099.

Medical: I have Stage 3 MCL, will undergo stem cell in Jan.

Preliminary biopsy of the lump just below the ileocecal valve (ICV) was read as Mantle Cell Lymphoma (same as neck) and therefore I am Stage 3 (defined as cancer on both sides of one's diaphragm), and it is official that I have not, in fact, drawn the 4 (or 5) Aces required to avoid Autologous Stem Cell Transfer in early 2018. Mrs Bloggerj joined me for the appointment.  We were sad, though not surprised (since that picture I posted led naturally to pessimistic thoughts).

But, once official, in quieter moments tears came easily (as Drs or Nurses stepped away to fetch papers or whatever).  Beyond that there's a enormous amount of busy-work involved in being a patient: scheduling, sequencing, signing waivers.  I will ask my employer to cut back to a 4-day/wk commitment. That will clear 2 days/month for chemo, and 2 more for, we hope, time with each child or a family trip or two before Christmas.

Dr is on vacation next 2wks, so she pulled the trigger on chemo start for next week before she goes.

PET scan on Monday will establish a pre-Chemo baseline, and will likely find what the colonoscopy found, and perhaps more (smaller) that had been below the threshold of the CAT. B
Chemo will consist of about 1.5 days every 4 weeks.  First two

Medical: Not what one is hoping to see

This is news, whose magnitude and direction we will learn Monday. Picture is not me with my tongue out, but a 3-4cm mass below my ileocecal valve.

Mostly normal from end to end, except the above noted (which is about the same size as neck lump) and a spot in my stomach which they also biopsied and which I will spare you the picture of.

PET for Monday

Offsetting the troubling news from my endoscopy is the news that I have a pet scan scheduled for Monday morning.

The timing seems a little odd since Monday morning is when we will be getting the results of today's biopsies but I guess the insurance company was optimistic enough to schedule the PET now

Medical: two polyps being biopsied

My colonoscopy looks generally clear but it did have to odd growths worth biopsy and we cannot say it was fully clear until the results of two biopsies come back--we are expecting the results Monday.

Of particular concern was A 3 to 4 cm mass (a firm friable ulcerated wide-based polyploid mass) found during the colonoscopy phase, adjacent to my ileocecal valve. This is not normal, was too big to be snipped out entirely, and may prove to be cancerous.

There was also a small bit in the lower stomach which they took a sample of and whose biopsy should be available Monday.

If it turns out my lucky streak has ended in my quest to prove I was stage 1, will be at peace.

Lyrical: my gut is clean and waiting to be looked at

My (pre-endoscopy) innards are as clean as:
A straw with the wrapper on
Shoes on the first day of school
Underwear at a doctor's visit
A bald mans comb
Trunk of a new car
Carpet under the floor mats

Medical: Prepping for Gut-scopy Thursday

Slotted for an upper endoscopy (mouth to midway) and lower endoscopy (bottom to midway...basically a colonoscopy that reaches slightly higher) tomorrow at 12:45p.  Diet of clear liquids* only 'til then, with two purges of Magnesium Citrate tonight and tomorrow.

*I asked if olive oil, coconut oil and hemp oil, which are all technically clear liquids were endoscopically-clear liquids. Medical Science was not expecting the old blog-meister to actually be chugging all 3 regularly.  They never saw me coming--I was the first to ever ask (had to catch the doc in the hallway). Answer was "No, those cling. They will gum up the sides of your gut."  At least they didn't try to maintain that they were not clear or not liquids.

Medical Good News: Aced Bone Marrow: Cytology is Clear

My Doctor writes:

GOOD NEWS!!! [Bone Marrow] normal (other than a small abnormality that is unrelated and NOT significant that I will discuss when I see you). Will work on the PET and GI referral ASAP. 

So I have officially cleared the Bone Marrow hurdle in my quest to demonstrate "only Stage 1"  Two scopes and a PET to go.

Now though, I'm distracted wondering what non-cancer exception they found in the marrow of my bones? "Awesomeness" seems a reasonable guess.

Lyrical: Through the Alimentary Canal with Gun Camera

In High School, my I favorite Algonquin Round Table author was Robert Benchley, for his sophomoric and digressive writing style. (I suppose you, like most people with better taste, chose Dorothy Parker, Noel Coward, or Harpo Marx)

Anyway, I always thought Benchley was the author of

Through the alimentary canal with gun and camera:
A fascinating trip to the interior, 
Hardcover – 1930

But it turns out Benchley only wrote the introduction.

Nevertheless, the book clearly anticipated the modern endoscopy and other-endoscopy.

Medical: Gut Check, literally, Wednesday 7am

I can tell my oncologist is back at work, and has called this an urgent appointment so they could book it for 7am, but can't tell if this is because the biopsies were clean, or if we're booking appointments assuming that they will be.

7am tomorrow "consultation" with a GI doc, which we hope will progress directly into an upper endoscopy (twixt mouth and stomach) to look for any imperfections in the lymphy lining of my gut.

Weeks ago now, the ENT threaded a camera and light atop a thin black cable up my nose and down my throat (after numbing).  I'm assuming this GI doc will do the same and just keep going to look at throat and stomach.