Overdue Update

Hi All,

Since I continue to show greater ability to handle cancer than computers, this post may wind up anywhere or even nowhere. I hope it’s visible and helpful or at least amusing.

As she said in the movie Poltergeist, “He’s back”.

BEASTIE COMES BACK

I think it’s coming to get me- but slowly. Isn’t that how it is for us all? My test results are unclear but suggest the progress of cancer somewhere within me. For details, read on:

The 0.9 mass in Jan was 1.1 cm. in April, a slight but measurable growth in size. Many additional scattered nodules have appeared. In general, a large body growing and new small ones is the worst progression. But none of the nodules was PET positive (took up glucose and thus showed high metabolic activity associated with fast-growing cancers) and the 1.1 only took up 1.6 SUV (you’d expect at least a 7.0), so the 1.1 might just be a post-surgical inflammation. SUV=3 was found in the area of the clips from the gallbladder removal 2.5 years ago, so there might be cancer there.

It seems like it’s somewhere as the CA 19-9 (119 before the Whipple, then 4-11 thereafter) has had successive upticks and now reads 36 (the standard is you always want to be below 37). I could get an endoscopic ultrasound to explore those SUV 3 masses near the clips. I’m not sure about the 1.1 in my upper left lung lobe as it’s a long way in, either around the scapula or pec, and getting a chunk out for good diagnosis would require the large needle that often creates serious lung crises, like a pneumothorax.

Ideally, one desires tests that, a) Tell a lot and hurt very little. Tests that, b) Maim and don’t advance knowledge I would like to avoid. Those two liver biopsies I had? They were b’s. Even if some one mass is cancer positive, how fast is it progressing? If a procedure is done, does it buy me more time? How much? At what cost? How do I feel during that time?

Right now I am symptom-free and strong. My gut is fragile but OK. Since the pancreas continues to shrink after a Whipple, I think it’s now so small it can’t produce sufficient insulin. My blood sugar is creeping up, and psychologically I now long for coffee cakes and foods I’d always hated and rejected my entire life.

All I really care about is how I feel. Right now it’s good. To review my definitions, they are:

1. Regular life: What we do all the time without thinking
2. Good time: Begins when you learn you have a fatal condition. During this period, you feel great
3. Medium time: Begins when you start to feel the effects of your disease, but you can still function OK
4. Bad time: You feel terrible and can’t do much
5. Death: No need to explain

I guess I am at the start of #2 above. I want this time to last as long as possible but can’t assist. Just how long I get to remain in #2 is unclear. I am concerned that treatments or even tests could push me out of #2 and into #3 or even #4, and then I would never be able to get back. It’s a one-way, one-time mistake you never want to make. I favor dwelling in #2 as long as possible, accommodating to #3 as best I can and racing thru #4 as quickly as possible. The common course is for #2 to be short due to denial of morbidity and late diagnosis and for #4 to be long due to denial of mortality and to enrich the medical industry.

All this considered, there may be another dinner for y’all, probably at the same place. If the first was titled Ain’t Dead Yet, this upcoming one will be yclept Way to Go, Tomorrow Never Knows or Varmint Still Wrigglin’.

Love, Jeff jeff@jgyoga.com

PS Much discovered. The Jan PET was not positive because at 0.9 the tumor was too small to light up. The CA 19-9 of 36 means my body is reacting to the presence of cancer- but where? The lung mass is typical of cc metastasis and the small masses at the junction of several organs near the liver is where the original cancer was. No surgery, chemo or radiation is likely to help any of this and would make me very sick. Even taking the endoscopic ultrasound is questionable, as results are often unclear and then they will want to start sucking out pieces with a needle or other stuff.

Given this, it appears the cancer has recrudesced and/or metastasized and that neither site is effectively treatable. In no case am I curable, and it appears there is little to be gained from procedures designed to provide helpful data. Math tells us that a 1.1 size tumor is around 37% larger than the volume of a 0.9 tumor, the amount the one lung mass increased its size in 3 months. V=lxπr2 and V=4/3πr3.

Right now my plans are to repeat the CA 19-9 and PET in 60-90 days and live energetically from now until then. This moment really is the inauguration of #2. So different from other times I’ve felt bad- injuries, diseases, hangovers- this time there will no feeling better after feeling bad. I may have upticks, but I will be on a downslope. I will lose energy, and it will not rebound.

Time to travel. While my bad hips are an annoyance, I’ll work around them. I’ll get to England, France and Italy soon, then go over to Thailand, a better place to be when sick than Europe. Then I’ll come back here to die- probably.

I am reading “How We Die” by Neuland, a doctor who for decades was realistic about death. Until it came to his own brother. Then he was all too human and gave him false hope, put him through unnecessary tests, added to his suffering, etc. because he himself could not be totally clinical. I may be having that now. [Old friend and retired onco] Ted said within 3 sentences speaking with [my current onco] David he knew how dire my condition was and that David was sort of soft-pedaling it to and from himself because Ted says David likes me and doesn’t like this news. David’s ideas about it being inflammation, post-surgical debris, etc. seemed to Ted to be desperate graspings. Ted said at one point in the conversation he felt himself get emotional.

Outside of misplacing things and feeling a bit spaced-out, I’m the last guy on my own block to feel this within. If and when I do, I’ll let you know. Up to a point. Obviously, at some time, I will feel less need and have less energy to express anything outward, so I’m loading up now. Read it while I can write it. Afterwards, there will be silence and peace.

Here’s the CA 19 9 chart. 5 successive upticks of increasing range are the problem.
[charts don’t copy over]