Mrs. Blogger and I met with a woman, whom I'll call Dee on Saturday.
Mid 60s, cyclist and athletic. Last January, during her periodic colonoscopy, her Mantle Cell Lymphoma tumor was discovered at a time when she otherwise had no symptoms at all.
She did the same 3-phase treatment as I have started:
Rituxan-Bendamustine (low side effect)
Rituxan-Ara-C (requires weekend hospitalization; her hair started thinning at this point)
Stem Cell Transplant (3 weeks in July for her; rehospitalized 1 week due to fever)
August recovery (super germ-conscious)
September back to work
(Now) - wears a scarf to cover the only lingering visible effect
100 days from July, she will begin "childhood" vaccinations with her all-new re-grown immune system
There was lots to report.
- Her highs and lows
- Her strategy for second opinions
- The stuff they don't tell you before you start
The lump & pain in my hip has not been heard from for at least a week.
ROLLING BACK TO MAY
The lump in my neck is back to about the size it was on Memorial Day. It is getting hard to see if you didn't know it was there. With sucking or puckering I can make it invisible, except that it is tucked above the biopsy scar (about 3cm long), and the scar itself is much thicker and tougher than normal, loose neck skin.
That's the way it was for our Grandma's Treat Beach Vacation around Memorial Day. You could see it then, if I pointed it out. I would pad into the kitchen each morning and night and explaining (to a family that is deeply suspicious of microwaves) "I have this lump that isn't an aneurysm that I'm hoping is a drainage issue." Microwaving a cute, clear pad full of little silicone beads was a barely-accepted use of radiation. Then everyone went out and exposed themselves to EMF radiation capable of burning and mutating skin (aka, UV from the sun). <waves to family readers>
THINKING BACK TO APRIL (OR MAYBE MARCH)
Recall, though, that I first noticed the lymph lump in my neck in March or April. I'm not actually sure when. It was morning and I felt a thickened area, perhaps the size of a quarter, entirely invisible from the outside, but that I could feel with my fingers as it sort of "floated" between my neck muscles and skin.
I was just coming off a mild cold, and the mass was exactly where my lymphs had swollen before when sick, except that it was only on the right side, and not on the left. This asymmetry was a little bit alarming. It was also a bit more vertically-centered on my neck, not tucked up under my jaw, the way cold-enlarged lymphs are.
My initial guess was that it was a clogged lymph duct and that some combination of heat and massage would get it draining again. I also, on a chiropractic visit somewhere in there, had my right ear tugged very hard (not my idea, I assure you) in the hopes of opening the duct from ear to clavicle.
So by the time I had my first doctor's appointment, on May 18th or so, when he asked "how long have you had this," I had to come up with a date. I didn't want say a date that was too distant (like I was stupid for not coming sooner) nor too recent (like I was alarmist for coming in for a minor thing). My mind raced to come up with a supportable date.
COMING UP WITH THE DATE
There is a scene in the movie The Manchurian Candidate, where the hapless Vice-Presidential Candidate (a Senator riding an anti-communist wave that he himself has stirred up), cannot remember the lines being fed to him by his wife (played by Angela Landsbury). He pleads with her that they come up with one, precise, easy-to-remember figure for the exact number communists known to work in the Defense Department.
As I sat on the crinkly-papered exam table in Dr Gullapallis over-air-conditioned exam room, and as I searched my memory for "the date I first noticed" I felt like this guy at breakfast:
I think the Manchurian Candidate scene actually played in my head before I answered.
Since no month has 57 days, for ease of recall, I have set April 20th as the "first morning I noticed". It was probably more like April 1 or April 10. But April 20th is the 57 Varieties of calendar dates, particularly good for calamities.
I answered "since April 20th."
April 20th is all three of Hitler's Birthday (1889), Columbine Shooting (1999), Deepwater Horizon's explosion (2010). April 19 isn't bad either, as Branch Davidian Raid/Fire (1993) and Oklahoma City Bombing (1995), but April 20th is also nice and round. So April 20th it is.
COMING UP WITH A PRIMARY CARE PHYSICIAN
Finding a primary care physician is about as arbitrary.
When I saw my Primary Care Physician back in mid-May, it was after 2 years of seeing no doctor at all, and the lump had prompted me to find a doctor's office that was convenient (it is a 10 minute bike ride, or a 10 minute car trip, or 13 minute bus from my house). It is just next to the Davis Square subway entrance and directly on the path of many "city" trips, including my bike commute and how we drop the kids off for their subway ride to Community Boating.
Shopping for a doctor based only on name, Dr Anil Gullapalli had availability, I suppose, because he was "new" to the Davis Square Family Practice and because his name embodied more excitement than most of my neighbors are looking for (the other doctor I was offered was named Shapiro, but he was much more fully booked).
Technically, it was not my "intake" appointment, nor my physical, but an "urgent" appointment, the point of which was to get somebody to look at my lump.
FIRST RUNGS OF THE DIAGNOSTIC LADDER
That very first appointment, he felt a pulse in the lump (we later figured that it was a big vein pushing on it from behind, but the lump was then small, and the pulse loomed large). That made it a pulsatile neck mass, and possibly an aneurism or other blood vessel ready to burst. I had a super-urgent sonogram either that evening or the next, in case it was a life-threatening condition. The sonogram "read as lymph" (and not hollow or blood filled) and so I was off the "urgent" track and slowly began to climb the diagnostic ladder to a cancer diagnosis.
I will always wonder whether, if we had found the cancer by needle biopsy at that point (might have been hard to "hit" it was so thin), would it have prevented the spread to my ileocecal valve, or was it already spread and would we have missed it in my hip, had we looked/scanned "too early."
The lump in my neck is about back to its size from sometime in May or June, beaten back from its pre-chemo peak in late August (where I said it was "half lemon" sized).
I did ride the bus on Monday, both because it was threatening weather and because I was a bit tired. After that, I had a good week of commuting by my comic-but-effective folding bike (20" Schwinn), which I use because the heavy, city-adapted, Urban Assault Bike (a 2013 REI Novara Gotham) has a busted freehub.
A little more than a week after chemo (and my anti-nausea pill was last Sunday) my gut seems back to normal.
As for the restless leg, I have had a few later-evening twitches, but haven't had to do the topical cream. I have been keeping up my magnesium citrate intake to stave off any restless leg, but I'd guess it was probably subsiding on its own, just like the gut issues have.
I'd been warned that each chemo drug has a nadir sometime after treatment. Treatment was great. The Nadir has not been. The current cycle, like the last, seems to have a low point on about the 4th day after the cycle began--basically casting a pall on an otherwise beautiful weekend.
1) Restless Leg Syndrome. This was a surprise, even though it had been on the "the list" at my initial orientation, but it is was sure enough real. When lying at my stillest before sleep, at at time when I wasn't quite asleep, but neither moved nor thought, I'd get a little twitch, that turned my ankle and flicked my big toe inward. (usually on the left foot). The ballerinas would say I'd gone "sickle-footed". Rubbing on fast-absorbing magnesium cream (which we'd stockpiled against such a contingency) seems to have stopped it--or maybe I just fell asleep in spite of it? Tonight I'll prep with both magnesium citrate (internal) and the cream (external).
2) Nausea--or mostly loss of appetite. One might feel hungry, but the thought of food is unpleasant and the prospect of eating anything is hard. At better moments, I was able to get down favorites such as bacon, fried eggs, fried onions, and bread or english muffins.
3) Fatigue--which is a strange thing. For me, it is experienced in the zone somewhere between sleep-tired and flu-weak.
Here's hoping that they're gone tomorrow, and that I can start seeing the lump shrinkage noticeably resume.
Chemo #2 has mostly been busy-work and Benedryl napping (on Day 1) so far. Today was Day 2 and was so "doable" that I biked to work (30mins), to chemo (20 mins), back to work (20 mins) and then home (30 mins). It was also a
Nausea and Fatigue seem to hit on Day 3 to 5 of a cycle, so I wouldn't claim to be consequence-free yet.
Other stuff I noticed:
1) My best veins are on my forearms, near my wrist. These also have the benefit of allowing me to bend my elbows without the needle binding. After inserting the needle pointing toward my elbow, the nurse tapes it down, and then doubles the IV back on itself and tapes things down again, so that the IV tube is also pointing toward my elbow.
2) For Oct 4&5 I am resolved to shave my arm hair. All the tape and tubing U-turns, described above functions as a strain-relief (not allowing tugs on the tube to tug the needle). BUT it also means there's a whole lot of taping going on, which means that then there's a whole lot of tape-ripping-off before the needle comes out. This would go better without arm hair.
3) I probably do have a small allergic reaction. Whereas the first time it got bad enough to cause a
"finger poke above Adam's Apple" feeling (and a 45 minute hold in Rituxan injections), with careful administration I've had just a strange, little cough, which we can't say is the tumor pressing, but must be some kind of irritation.
Getting back from the eclipse meant getting back to work, and a chance to have a weekend at home after the two prior weekend's Ballet & Eclipse and before this weekend's Appaloosa Festival. All together that's nearly 4000 miles of driving on the old (2004) minivan, and is fairly taxing on the old (1965) me.
Last weekend, while I stayed home, the family went to Eastham on Cape Cod and had a glorious time, but I just needed a chance to sleep late and do a few projects at home. The outdoor community pool closed on Aug 26th, so I returned to the gym for exercise on Saturday, Tuesday and Thursday.
THE MEDICAL PART
Wednesday was my first doctor's appointment in a long time. Mrs Blogger and I met with the oncologist and:
1) Saw that my tumor has stopped shrinking for now (and even grown back a little, I'd say) It is definitely bigger than a Brazil nut, but much smaller than it had been. Still, it has started pushing down the same lymph tube it had before. The bullet-tip point has re-emerged (but smaller).
2) Doctor said this was about a normal amount of shrinkage. She was pleased-enough with the results.
3) We're starting to plan for a real second opinion of Stem Cell or altneratives after Round #3 of Chemo concludes, say, October 20th or so.
4) The doctor cancelled my port insertion, and frankly I'm happy. She checked with the nurses and decided that my reaction to the Bendamustine had not been bad enough to warrant the risks and trouble of inserting the chest port. Looking back, I'd asked for the port mostly because the number of needle stabs and blow-out bruises was getting a little hard to bear. But looking ahead, I'm just has happy to have only two procedures next week (4 hours of Rituxan-Benda and 2 hours of Benda) and not a half day of port-insertion.
So then we drove to Virginia from 6pm to 4am Thursday into Friday. Then on my Friday morning work call and work the day, while the rest of the family went to help their aunts and uncles set up the festival.
WHAT PORT INSERTION WOULD HAVE INVOLVED
I shared a diagram of the port. But the surgery had two complications:
1) They wanted me to shower twice with Hibaclens to sterilize my front from neck to groin. Then wear only freshly-laundered clothes and sleep on freshly-laundered sheets. That was going to be a big deal for a guy like me who treasures both his skin bacteria and his gut bacteria as symbiotic friends.
2) The surgery would have put the port in my chest Wednesday, and they'd have closed the skin around Thursday's first chemo needle and I'd have lived with a needle sticking out of the closing wound. Yuck.
