Once we’d got our ID badges, we headed for registration. After registration, I went to my first appointment: the laboratory for blood work! The phlebotomist was talented and hit a good vein on his first try. Lucky thing, because he had to draw NINE vials of blood. Yikes!

After the lab, I got an EKG. After that, a chest X-ray. And after THAT, a CT scan. In between all of these activities was a fair amount of waiting around, but what can you do? It’s sort of the nature of the beast. Considering that NIH doesn’t charge patients for the care given there, we’re in no position to complain.

After all the tests, I got to meet with the doctors. First, I met with Dr. R1., a very nice younger guy. He took my history and then went off to discuss my case and my various test results with Dr. R2. — the main guy.

After a bit, Drs. R1., R2, and the very nice nurse/coordinator lady all returned and we got down to business talking about what I’ve got and what they might be able to do for me.

Most of what R2 had to say about pseudomyxoma peritonei was stuff that I already know. He did make a special point, though, of explaining that “pseudomyxoma peritonei” is really just a description of the symptoms of my disease and that what I have should more appropriately be referred to as a “peritoneal surface malignancy”. Good enough.

Anyway… he said that my CEA tumor marker has gone up a bit since it was last tested. Not terribly surprising. He also said that the CT scan shows that I have mucous goo encapsulating my liver and a good-sized blob of it on my right omentum. (The omentum is the lining of the peritoneal cavity.) There was also some nebulous goo of a denser quality in the middle/lower part of my peritoneum. The good news was that there doesn’t seem to be much involvement with my small intestine. Once you start having to mess with the small intestine, you open yourself up to a bunch of potential complications. So… don’t mess with the small intestine.

Next, the discussion moved on to the question of whether they would do surgery on me there. R2 agreed that I might be a good candidate. Besides the cancer, I’m otherwise relatively healthy. The pathology results from my previous surgeries indicated that my cancer is low to intermediate grade. (If it was high grade, he would advise against surgery — mainly because the damage to my quality of life might not be worth the relatively small amount of survival-time such a major surgery would gain me.) Dr. R2 wants to see the actual pathology slides from my last two surgeries so he can see the cell density — which is also a determining factor on how successful (or not) more surgery might be. So, my big task for next week is to try to obtain the slides and get them to the friendly nurse/coordinator lady as soon as possible.

The surgery we’re talking about, by the way, is the same procedure I was supposed to have last July — only this time WITH the HIPEC (heated intraperitoneal chemotherapy). The procedure would take maybe 10 hours. I’d be in the hospital a couple of weeks. It’s a pretty big deal. They would do the surgery right there at NIH. It turns out they have inpatient facilities as well as the outpatient clinic.

If I can get the slides to Dr. R2 quickly enough and if they look good, he could do surgery as soon as 8 weeks from now. I’d get to quit chemo for 4 to 6 weeks before the surgery, which would be GREAT. It would give me some time to rebuild some strength and maybe put on a little weight. (I’ve lost another five pounds and now weigh what I did when I was in my early 20s and extremely foxy.)

So! That’s where we’re at. I’m feeling encouraged!

So… how I’m doing: Pretty well, all things considered. Nothing has changed much (as far as how I feel) since my last update. Diarrhea is still a pretty significant problem, but Lomotil works reasonably well at controlling it. Also, my oncologist turned me on to using Mylanta to take care of what were pretty miserable gas pains. Apparently Mylanta breaks big pockets of gas (the especially ouchie kind) down into little gas bubbles that pass pretty easily. So… I’m farting more, but feeling better.

Too much information?

Tough luck.

There has been some good news. My CEA tumor marker has continued to go down with each chemo treatment. It’s still very high — around 150 (6 is the normal high) — but it’s not around 260 like it was about 6 months ago. So, not bad. CEA can also be elevated due to abdominal inflammation, not just due to production of cancer cells. I know for a fact that I’ve got a LOT of inflammation due to the diarrhea, so… it’s got to be a factor, I think.

Other good news: I have an appointment with a specialist at the NIH/NCI (National Institute of Health/National Cancer Institute) next week. The clinic is in Bethesda, right across the street from the Naval Hospital (might already have been renamed the new Walter Reed Hospital). Mark is taking the day off to go with me, partly because it’s just good to have a second pair of ears there and partly because I think the trip out there might be more than I could easily handle by myself. I’ll be there for quite a while. They’re going to do a new CT scan, EKG, chest X-ray, and probably a shit-load of lab work. The doctor I’ll be seeing has been doing a lot of research on peritoneal surface malignancies (what I’ve got) and, I believe, he’s also a surgeon. So… maybe I can get him to do surgery with HIPEC (heated intraperitoneal chemo — the best treatment for my cancer). He’s also into tailoring systemic chemo to specific individuals and their cancers, so that could be helpful. Most IV chemo isn’t especially effective with my cancer because it (the cancer) isn’t connected to my blood supply like most cancers are. This is good — it doesn’t metastasize very easily — but bad because it’s harder to “get at it” without doing major surgery that involves lots of scraping of organs and such.

What else? I think that’s about it for now. I’ve got a sore butt like most days (again with too much information!) so I took some morphine and a Percocet about a half hour ago. It’s been interesting to me how free the doctors are with the heavy narcotics when you’ve got cancer. I never dreamt I would have an easily refillable prescription for morphine, of all things. That shit works good, though.

Again with too much information.

Thanks for all the well-wishes and prayers many of you have been sending my way. I love you all.

(That’s another interesting thing about cancer. You realize how many of the people around you deserve to hear that you love them.)

I got a call from my surgeon’s office yesterday and they tell me that, based on his review of my latest CT scan, my “disease has progressed to the point where surgery wouldn’t be helpful”. In other words, he thinks it’s inoperable. In yet other words, he thinks its terminal.

Well, I don’t think it’s terminal or inoperable. My disease is still entirely limited to my peritoneal cavity (it hasn’t spread to my lungs), and I know from my reading that there are plenty of other surgeons who are willing to operate as long as it’s not in the lungs.

I have an appointment with my oncologist on Thursday and we will discuss this debacle. When I first met her, she mentioned surgeons at NIH who she knows who are doing this procedure (cytoreduction surgery with HIPEC). So, maybe she’ll hook me up with one of them. (We’re looking for doctors who Kaiser Permanente won’t give us a bad time about.) If worse comes to worse, there’s another good doctor in Baltimore who is MUCH more willing to take on difficult cases. We will give him a try if it comes to that. (Thank goodness we have lots of money saved.)

The other bad news yesterday — though not quite as bad — is that my white blood cell “neutrophil” count is too low for me to have chemo today. So…. I’m put off for a week. I believe my oncologist will increase the number of Neupogen injections I take from 3 to 5 and hopefully that will put an end to THAT problem. I really can’t afford to be missing chemo session.

On the up side, my CEA tumor marker went down about 20 points this last time — evidence that the chemo is doing something — so, yay!

I’m nowhere ready to give up, friends. I’m looking at some scary stuff, but I feel pretty good and I believe there are a LOT more options out there for me, so…. Off I go.

Other health news: The one liver enzyme that was very very elevated has gone down a bit on my latest bloodwork. Yay! Maybe the FOLFIRI is having an effect on the liver tumor. My CEA tumor marker went up yet again but by a much smaller percentage than in past tests, so… not great, but not too bad. It might be due somewhat to all the inflammation in my gut from the chemo.

So, the plan now is that I will continue on FOLFIRI without the Avastin on the presumption that I will be having surgery again in late January or early February. Also good news is that my local oncologist is onboard with the idea of me having surgery again and agrees with me that I should be a good candidate for it still. If for some reason my previous surgeon doesn’t want to go back for another try, my local doc has connections at NIH with people who will do the surgery with the HIPEC. (Though I’d rather stick with my original surgeon since he has very much experience with what is a very complicated and delicate procedure.) We shall see.

Also, I’m now lined up for my next CT scan — which will be in mid January. Much will be revealed at that time. Until then, it’s all a matter of just keeping on keeping on.

For those of you who aren’t part of my musical life, I’m no longer doing any performing. I’m just too fatigued to make a decent go of it and it’s not fair to the groups I play in to be unreliable as I have been. (I’ve had…ahem…episodes of sudden bouts of diarrhea with accompanying cramping and general abdominal owie-ness. Not the best circumstances for performance.) So… I’m home most of the time now. Stop by for a visit if you’re in the area!

Nurse Jackie This has Edie Falco (remember her from The Sopranos?) as an emergency room nurse who’s addicted to pain killers. It’s funny at times, sad at times, and wholly engaging. Edie Falco’s a wonderful actress and she’s got some other really good people to work with.

The Big C This one is about a woman who’s battling malignant melanoma. Again, it’s funny and sad and pretty good.

Breaking Bad Wow! What a great show! Remember the guy who played the dad in “Malcolm in the Middle”? In this show he plays a high school chemistry teacher who (diagnosed with lung cancer) decides to manufacture and sell high-quality meth in order to make money to set his family up after he’s gone. Turns out he doesn’t die quite as quickly as he’d expected. Things go terribly terribly wrong with the whole meth business thing and very little of it is funny. I always liked Bryan Cranston in his comedies. Turns out he’s an amazing dramatic actor, too. (Just like Kelsey Grammer — more about him later.)

Grimm I’m not sure I’m going to continue with this one, but I’ll give a brief description. It turns out that all those bad guys in the fairy tales — big bad wolves, etc — are real shape-shifting type creatures that exist in our everyday world. There are special people called Grimms (like the Brothers Grimm, get it?) who are capable of recognizing and destroying these baddies. It’s all very “Buffy the Vampire Slayer” — and was created by some of the same people. I thought it might be good, but it’s turning out to be sort of ho-hum.

Once Upon A Time Another show where fairly tale creatures exist as “humans” in our everyday world. This one has a rather involved plot that I’d rather not spend the time getting into. Suffice it to say, it has a cute little kid who is becoming more annoying as the show goes on. Also, the “hard as nails but with a heart of gold” protagonist is unappealing to me. Characters like this should have some kind of likability, but I’m just not finding that in her. There’s no hint of warmth and you really need that — a hint of warmth — in order to make this sort of character work. Others may disagree, but I don’t think this actress is capable of pulling it off. I’m quitting this show too, I think.

Hell on Wheels We started watching this mostly for my husband seeing as how he’s a railroad sort of guy. (He works for the Federal Railroad Administration as a Scientist — mostly on stuff related to positive train control.) At any rate, this show is about the building of the transcontinental railroad. It’s an interesting window into that time. It was really dirty back then. I can only imagine how people smelled. To be honest, I’m not all that taken with the plot but the historical references are interesting.

Enlightened This has Laura Dern as a woman who freaks out at her job as an executive, gets fired and spends a month or so at a treatment center/spa sort of place getting her life back in order. She tries to get her original job back, but they put her down in some sub-sub basement department doing data entry type work. The show is about her trying to stay upbeat about her life. It’s funny and sad and really very good. Her real-life mother, Diane Ladd, plays her mother on the show. This one is probably an acquired taste — but I really like it so far.

Boardwalk Empire Another “wow! what a great show!” kind of show. I’ve always loved Steve Buscemi’s acting and he’s great in this series. He plays the city treasurer of Atlantic City during the prohibition years. He basically runs the whole city, making sure liquor is available at all of the city’s entertainment venues, keeping the wheels turning, keeping everybody happy, arranging for people to be killed when necessary… There are a lot of great actors in this series, the plot is great, it’s really good in pretty much every way. Very highly recommended.

The Walking Dead I love this show! But of course I do! Everyone who knows me well would know that I’d love this show. It’s got zombies and more gore than you could possibly ask for. Not only that, it’s got interesting non-zombie characters with plots that are at times even sort of thought-provoking. My favorite character on this show is Darryl. Darryl is sort of red-necky, but he carries a cross bow for killing zombies (smart! kills silently!), knows how to track, knows wilderness first aid, and is willing to eat raw squirrel when necessary. Darryl rocks and if I were ever in a zombie apocalypse situation, I’d want Darryl on my team. Team Darryl! Team Darryl! Team Darryl!!!

Terra Nova The more I watch this show, the more I like it. At first I thought the cute little kid might be a problem. (I typically don’t like shows with cute little kids.) They’re keeping the kid pretty much in the background, though, so all is good thus far. Okay, so… if you haven’t seen it, the premise is that it’s the year 2149 (I think). Earth has gone to hell with pollution and such. A portal to another “earlier” earth is discovered — like with dinosaurs — and select people have gone through to set up a new utopian society. There’s lots more. It’s complicated. It’s turning out to be pretty good.

Boss This is another GREAT SHOW. Kelsey Grammer plays the mayor of Chicago. He has learned that he has a fatal disease that will gradually rob him of his mental and physical faculties. He’s ruthless, brutal, crude, and fascinating. The show is about politics as much as it’s about the main character’s deterioration. It’s not at all funny and if you like Kelsey Grammer already (I do), you’re going to be completely wowed with his dramatic acting.

Everybody knows the rest of these shows, right?

Dexter Serial killer with something sort of like a conscience.

The Office I’m especially loving James Spader as the Robert California character.

The Daily Show What’s not to love?

The Colbert Report And again?

I had my appointment with Dr. Marshall this afternoon. He’s a world class type specialist on colon cancer at Georgetown University Hospital. His view is that I have a (rare) form of colon cancer “that is not going to go away”. He said this is the hardest thing he had to say to me. In his opinion, it’s not going away.

Then we talked a lot about how my cancer is more aggressive than the typical Pseudomyxoma Peritonei, but is not behaving like the usual colon cancer.

Let me back up a little here for the benefit of people who haven’t been following along on this whole deal. Five years ago I had a large villous adenoma (a kind of polyp) removed from my colon. It was “dysplastic” but was removed with clean margins and all the lymph nodes they sampled were clean, so it wasn’t called a cancer and I didn’t receive any “cancer treatment” (chemo, whatever) afterwards. In the intervening five years, some cells that escaped during that surgery set up shop in my peritoneum (basically the whole area below the bottom of the rib cage) and have been growing in various abnormal ways. Some of them have formed tumors — one is on my liver and there are at least a couple in what’s left of my omentum (a layer of tissue that covers the peritoneum). Some of the other cells have just formed gelatinous goo that’s sort of sloshing around in my peritoneum. (The goo is typical of Pseudomyxoma Peritonei.)

Dr. Marshall’s view is that since this is a kind of metastasis from what was originally a colon tumor (though relatively benign), what I’ve got is a form of metastatic colon cancer. He views Pseudomyxoma Peritonei as being only the kind that is slow-growing and (apparently) of appendiceal origin. So… he’s kind of a purist when it comes to terminology. Some other doctors would refer to my condition as being a rare form of Pseudomyxoma Peritonei of an “intermediate” grade that’s a bit more aggressive but still isn’t full-blown “signet ring cell” cancer. PMP is rare and there’s still a good deal of controversy over how to describe it and what is or isn’t actually PMP.

I guess it doesn’t really matter. Dr. Marshall has a clear understanding of the source of my condition and if he wants to call it colon cancer, it doesn’t really change much other than perhaps make the whole thing a little scarier. I should add that even though he said “it’s not going away” he did at one point make reference to having cytoreduction surgery with HIPEC as “potentially curative”. Of course, I chimed in at that point: “That’s what I want obviously. To be cured.” To be honest, though, my impression is that he doesn’t have a lot of faith in HIPEC as a curative treatment. We all need to keep in mind, though, that Dr. M. is an oncologist who treats cancer with chemotherapy. He doesn’t do surgery. So his tendency would be to see cancer problems through the eyes of someone whose set of tools consist of chemo drugs. A surgeon sees problems with his own frame of reference. Between my two specialist doctors — Dr. Marshall and Dr. Esquivel (the surgeon) — I think I’m going to get the best ongoing treatment for my problem, whatever you want to call it.

Anyway, on to his recommendation: Dr. Marshall thinks I should have 3 or 4 more rounds of chemo — my current FOLFIRI with Avastin regimen — and then have another CT scan to see whether the new drug is having any effect on my tumors. Oh… I should add here that I now also have a better understanding (and acceptance) of why they’re wanting to do more chemo instead of just diving in with another surgery. Apparently, there’s no way of telling with a CT scan whether my tumors are just clumps of goo on the surface of my organs (liver in particular) or are actually “digging in” and getting nourishment from my blood supply. That I had no tumor shrinkage from the FOLFOX chemo “suggests” that they may not be getting blood (which is good), but the doctors want to be sure and if they ARE getting blood, they want to find a chemo regimen that will shrink the tumors and make them easier to remove. Okay, so… that’s that. So, after the next CT scan (which will be in about 6 weeks), a decision will be made (again) whether to continue chemo with another drug, continue chemo with more of the same drug (assuming results show that it’s working), OR move forward with another cytoreduction surgery — this time with the HIPEC. (Heated intraperitoneal chemotherapy that’s done during the surgery, for those of you new to this saga.) Several factors will come into play. Are the tumors growing or shrinking? If they’re growing, is it fast? Are they starting to impinge on the functioning of any of my organs in a serious sort of way? Would it be dangerous to put off surgery?

Another thing Dr. Marshall talked about was the possibility of getting into clinical trials with other drugs. Again, it all kinda depends. Also he mentioned the possibility of sometime down the road having a special blood test to find out whether I’ve got a certain genetic mutation that increases the likelihood of colon cancer. He brought it up because several of my paternal relatives have died of colon cancer. If I’ve got this mutation, it would then be wise for, say, my nieces and nephews to also be tested so they could have a “heads up” on the statistical possibilities.

He also talked about the possibility of continuing on chemotherapy (something I’d get every day, presumably a pill of some kind that he said is well-tolerated) even after crs/HIPEC just to help insure against additional tumor growth. Like I hinted earlier, I don’t think he’s got a lot of faith in HIPEC. But…hey… it’s not one of the tools he specializes in.

So, I think that was pretty much it.

I was hoping I’d see him and he’d say, “Oh, heck yeah! You don’t need to be on systemic chemo! You need to have another surgery ASAP and this time with HIPEC! That’ll fix you up!” Sigh…probably unrealistic. So, I’m disappointed and kinda bummed by his less-than-rosy prognosis. I still think I’ve got a reasonably good chance of beating this, though, and that’s the position I’m taking as I move forward with it.

Ai yi yi.

Perry can’t remember what he’s going to do if he becomes president.

Cain continues to refer to the sexual harassment complaints against him as “unfounded” character assassination when it’s a matter of public record that the National Restaurant Association paid out millions of dollars to settle two complaints severals years ago before he even became a candidate. (Apparently, the NRA found the complaints believable enough.) And besides all that, what on earth qualifies a former pizza king with no real political experience to run the country.

Michele Bachmann is just crazy. (And creepy…really creepy. Like she lures children into her little candy house in the forest and then eats them.)

Most of the other Republican candidates are so ignored by the press that god only knows what their qualifications and policy positions are.

The only Republican whom I would consider capable of perhaps being a reasonable president is Mitt Romney — and he’s the one the Republicans don’t want because he’s “too liberal”.

This is the best they can do? There was a time (before Reagan, incidentally) when I might have considered myself “Republican-esque” in my political thinking. No more. The party’s been taken over by freaks.

This is really disappointing. I was looking forward to being done with this part of the program and getting on with the whole “chemo washout” and preparation for more surgery part.

In addition, Dr. E. would like me to have a second opinion consultation with Dr. Marshall at Georgetown. (Well, actually, the man himself or one of his associates.) Apparently, Dr. Marshall is another world-class expert kind of guy. My impression is that Dr. E. knows him and, this is really good, it turns out that my oncologist at Kaiser also knows him and did her fellowship under him. All good! My impression (optimistic, as always) is that since my situation isn’t dire enough to require immediate surgery, they want to mess around with chemo drugs a bit to see whether they can get any effect from them on the goo attached to my liver and the other little blobs of goo elsewhere.

Anyway, so that’s the plan. Dr. Marshall is not a Kaiser Permanente doctor, so we’ll be paying his bill ourselves (and I expect it to be a whopper of a bill.) Thank goodness for savings — and for insurance that’s covered the rest of my care. And thank goodness we live in an area where there are a lot of REALLY good doctors.

I’m considering canceling my participation in holiday concerts. I had expected to be off chemo and feeling better by December, but that’s not going to be happening. I expect to be feeling worse. (More diarrhea than I’m dealing with even now and definitely more fatigue.) So… it may turn out to be a very very low key winter for me.

Anyway, so… the bad (though unsurprising) news with the CT scan is that the goo is still there and is growing. The good news is that it’s all still confined to my peritoneum and shows no signs at all of acting like a regular metastatic colon cancer. This is very VERY good news.

On my reports like this, they keep referring to my diagnosis as “colon cancer metastatic to peritoneum”, but that’s really not entirely accurate. The cells that escaped into my peritoneum and began multiplying as pseudomyxoma peritonei were not malignant. They were from a benign villous adenoma. Granted, villous adenomas are especially prone to go bad (“Bad polyp! Bad!!”), but mine was not malignant when it was removed. So… I’m guessing the various doctors, most of whom are likely unfamiliar with PMP, are just trying to come up with a description that seems reasonably accurate.

Anyway, here it is. I hope to be hearing from Dr. E. some time in the next few days and I’ll report back then.

———–

INDICATION: Followup cancer metastatic to peritoneum. 

STUDY: CT OF THE CHEST, ABDOMEN AND PELVIS W/ORALAND INTRAVENOUS 
CONTRAST, 10/25/2011

TECHNIQUE: Axial multidetector CT of the chest, abdomen and pelvis 
was performed during intravenous administration of non-ionic 
contrast. Oral contrast was also administered. Delayed images were 
obtained through the kidneys, ureters and bladder.

FINDINGS: Comparison is made with abdominal CT’S performed 5/31/2011 and 3/3/2011.

CHEST: There is a chemotherapy injection port implanted in the 
right anterior chest wall with catheter extending into the upper 
aspect of the right atrium. There are no significantly enlarged 
hilar or mediastinal lymph nodes. The lungs are clear. No axillary 
adenopathy is seen. A right thyroid nodule seen on the March study 
is not as conspicuous on today’s exam but certainly does not appear 
to have increased in size. No pleural effusions are seen. 

ABDOMEN AND PELVIS: The previously noted subcapsular collection 
surrounding the right lobe of the liver has continued to increase in 
size, now measuring up to 1 cm in width compared to about 0.8 cm 
before. This extends into the subhepatic space where it has a 
nodular configuration that measures approximately 2.6 x 1.6 cm 
compared to 2.1 x 1.2 cm previously. Findings are consistent with 
serosal metastases.Again noted are a number of ill-defined soft 
tissue densities involving the omentum with some interval progression 
since 5/31/2011. Image 2.191 on the current scan shows two nodular 
soft tissue densities just medial to the ascending colon that were 
not clearly visualized previously. These measure 1.2 and 1.3 cm in 
maximum diameter. An increased amount of ascites is seen in the 
right aspect of the pelvis, which, in the absence of intraperitoneal 
chemotherapy, would be suspicious for progression of disease as well. 

As noted before, the patient has had a hysterectomy. A number of 
clips surgical clips are seen in the omentum. 

As noted previously, the patient has had cholecystectomy. There is 
a small amount of pneumobilia. No focal liver parenchymal lesions 
are seen. The spleen, pancreas and kidneys are unremarkable. Bone 
windows are unremarkable. 

IMPRESSION: Findings are consistent with progression of disease.

In addition to raising millions of dollars a year for breast cancer research, fundraising giant Susan G. Komen for the Cure has a lesser-known mission that eats up donor funds: patrolling the waters for other charities and events around the country that use any variation of “for the cure” in their names.

via Susan G. Komen Foundation Elbows Out Charities Over Use Of The Word Cure.

My friend Jodie, who raises money for the American Cancer Society, sent me this link after she read my last blog post. It’s definitely worth reading, so please do so.

I was just thinking about SGKF this afternoon… thinking about all the “extra” money they must have laying around to provide all the free crap they do to breast cancer patients: the water bottles and scarves and books and superfluous “navigators”. What I was thinking is that this is money that could be given to people researching other kinds of cancer.

I know it’s kind of ridiculous to get into a pissing match about what kind of cancer deserves research dollars the most. Breast cancer is bad — no doubt about it — and it kills a lot of women. However, as my friend Jim pointed out on Facebook, it’s not the number one killer of women and it’s not even the number one cancer killer of women.

I saw Susan G. Komen’s sister (she who founded the foundation) on TV once and I was impressed with her. She started the foundation from pretty much nothing and turned it into a mega-thing mostly through her own refusal to quit. It seems to me, though, that she needs to reevaluate what she really wants from this thing.