Words Like Locusts Flew From Her Fingers

Drugs, Drugs, and More Drugs

They sure are more liberal with the pain meds when you’ve got cancer! Today I got a prescription for honest-to-god MORPHINE for my abdominal pain. The Percocet I was taking was keeping me awake at night, so we’re trying this instead. Weird, I know. Apparently I’m especially sensitive to narcotics — with the Percocet, I doze and have one after another of weird mini-”dreams” which wake me from my dozing — which wasn’t really sound asleep to begin with. Maybe morphine will work better. We shall see. When I’m having pain, I’ll be taking 1 time-release tablet every 12 hours.

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!

Another Disappointing Day

Well, I guess they can’t all be bright and shiny, eh?

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.

Disappointing Day

I’ve heard back from Dr. Esquivel’s office and he wants me to have six more cycles of chemotherapy. I’ll be changing from the FOLFOX regimen to the FOLFIRI regimen. The difference being that instead of oxaliplatin, I’ll be getting irinotecan. I’ll still have the 46-hour 5FU infusion. Yippee. I should have fewer neurological side effects, but more diarrhea. (Yikes.)

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.

CT Scan Results

I got the results back from my recent CT scan and since you’re reading this, I figured I might as well just copy the report right in here for your total edification. It’s down at the bottom of this post. As you’ll see, the goo continues to grow in my peritoneum, most specifically on my liver and in a few spots on what remains of my omentum. This is not unexpected. Systemic chemotherapy isn’t effective with pseudomyxoma peritonei because the goo isn’t really connected to any blood supply. I’m getting the chemo as sort of a precautionary measure, but it doesn’t really appear to be doing anything for me besides making me feel sick most of the time. My tumor marker results continue to rise at an alarming rate. The goo continues to grow. With any luck, I’m done — or very close to being done — with chemo. My oncologist is talking about switching me to some other drugs, but honestly I can’t see where that would make much difference. I await the word of my surgeon, Dr. Esquivel, as he is a true expert with this disease.

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.

Breast Cancer Bullies

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.

So It Goes

Yeah, so… once again, the words haven’t been flying off like locusts. It’s getting cold out. Maybe they’re hibernating. Or something.

Actually, I suspect that a large part of my relative lack of communication is that there’s a whole lot of “different day, same old shit” going on in my life lately. Remember all that “good week/bad week” business from a month or so ago? These days they’re all pretty much “blah”. The bad weeks (week one of each chemo cycle) haven’t seemed as bad as they used to, but the good weeks (week two of each cycle) don’t seem significantly better, either. It’s all just one long gray stretch of mild nausea, mild headaches, tingling fingers and toes, everything tasting weird or not tasting much at all, and occasional diarrhea. Oh, and fatigue. Lots and lots of fatigue. And did I mention that my hair is now falling out? I’d read that thinning hair was a possible side effect. As usual, I thought I’d somehow be exempt. It’s not bad enough that I’d shave my head at this point, but it may soon reach a point where I start wearing scarves to kinda cover up the places where my scalp is starting to show through. Actually, I’m cool with that. Scarves and hats and such can be good.

Whatever. So… that’s why no blog entries. It’s just one blah-blah plodding day after another lately.

Oh, I do have some exciting news. My CEA tumor marker level is now up to 167. Yes, that’s right. It has quadrupled in one month’s time. Not the sort of result you want to see when you’re actively getting chemotherapy. It’s possible that it’s just due to extreme inflammation in my digestive tract due to the chemo. I’ve got a CT scan scheduled for this coming Tuesday that will be helpful in revealing exactly what’s going on inside me.

I’ve got a feeling more surgery — which was planned anyway — may be happening sooner rather than later.

Oh, and since I’m in a real bitching and complaining kind of mood: Let me just say that I’m getting REALLY SICK AND TIRED of all the breast cancer pink ribbon crap everywhere. All these commercials: eat our yogurt and we’ll give money to breast cancer research, buy our cleaning product and we’ll give money to breast cancer research, shop at our store and we’ll give money to breast cancer research… Look, I’m very happy for everyone who has breast cancer (like my good friend Carol) who has benefited from all of this money, but there are a whole bunch of other kinds of cancer and people with those cancers — especially people with rare cancers like mine — who feel a little bit like they’ve been sucker punched with all this rah-rah-breast-cancer business.

When Carol first started treatment for her breast cancer, she got all kinds of free stuff: a pink water bottle, head scarves, books, and not one, but TWO, “cancer navigators”. (The “navigator” is a special nurse who helps guide the patient through their treatment.)

When you get pseudomyxoma peritonei (PMP), you get nothing. Nothing, that is, except a lot of blank stares from people (even from medical personnel) who’ve never heard of your disease and really have no clue what it is or how it’s treated. There are very few general cancer surgeons in this country who recognize PMP when they see it. If you don’t happen to have the good luck of being operated on by one of them, you’re very likely going to be treated like a colon cancer patient — which isn’t really going to help you very much. It’s only my good luck, and — yes, my ability to do effective online research — that’s given me the chance I’ve got for beating this thing.

Some days, though, I really wish I had my own “cancer navigator”.

Eaten by Langoliers

It kind of blows my mind that it’s already October 12th. Where the hell did September go? In our house whenever someone asks “Where did the time go?” We always answer, “The Langoliers ate it.” (We’re big Stephen King fans at our house.) Well, the Langoliers really chomped down on the last month and a half because I don’t remember much of it going by.

I had chemo a week ago Monday and I’ve been having a surprisingly good time of it since then. “Bad week” was barely bad. I didn’t have any break-through nausea at all and what diarrhea I had was easily controlled. I feel fatigued and my hair is falling out, but other than that I feel pretty okay. Not great — but not bad, either.

The thing with my hair…sigh. It’s definitely thinning. Every time I brush my hair, I have a much bigger clump than usual to clean out of the brush. Also, it’s just falling out all over me pretty much all the time now. I don’t have any bare patches or anything like that, but it’s thinner and looks like of scraggly. My kind of chemo isn’t supposed to make all my hair fall out — but it’s not uncommon for this level of hair loss, so… I guess, as usual, I thought I might somehow be exempt from this side effect.

This week, “good week” has been better than usual too. Though, as I said before, I am fatigued and have very little energy for doing things.

What else is happening in my life that might be noteworthy? Orchestra and flute choir rehearsals are going well. The little dog is as barky as ever. Life goes on pretty much as usual. My friend Carol has started radiation treatments for her breast cancer. Five days a week for 6 and a half weeks. Yikes. She says that, so far, it doesn’t hurt though, so… that’s good. I don’t know if I’ve mentioned that Carol and David (her husband, retired) and I get together a couple of times a week to watch episodes of The Sopranos on DVD. They’d never seen the series and I suggested that since we’re all going to be sitting around the house a lot, we might as well do something fun with part of the time. We’re at the end of Season 3 right now. Lots of good stuff coming up. (I’ve seen it all before.)

I’ve actually been spending a LOT of time watching television. Not so much regular broadcast stuff, but stuff on Hulu Plus or Netflix streaming. I re-watched all of “Enterprise” over the past few weeks. Yesterday I watched a documentary about the Amish (though I slept through part of it), another documentary about the Vatican, and part 1 of Ken Burns documentary about Prohibition. I watched all of the episodes of Breaking Bad on Netflix or on “Video on Demand” (great show) and I’m thinking about watching that Terra Nova show — though I have to admit it looks pretty stupid. If it is, I will not watch. I’ve got better options than to watch stupid TV shows. (Several more documentaries in my Netflix queue, for example.)

Anyway… I guess that’s about it from here. Still got cancer — my CEA level (a tumor marker) had doubled on my last test. Still doing chemo. I’ve got a CT scan scheduled for 10/25 and that ought to produce some interesting results.

Bad Week – Good Week

Well… it’s been an unpleasant week, but I’m feeling reasonably good this morning so I’m going to be optimistic and say I’m on the way to beginning Good Week.

For those who are following along with my lament, my tale of woe, my nearly continual whining… I had a chemo treatment this past Monday. This time they added Avastin to my FOLFOX regimen and I’ll have that now for the duration. (Uh, maybe. More on that later.) Not surprisingly, my side effects were worse. I had a headache for a day and a half (that’s from the Avastin) and diarrhea for more days that was a bit more difficult to control. (Hurray for Imodium!) The nausea was also somewhat more persistent. It’s somewhat controlled with a combination of Compazine and Lorazepam, but those are pretty sedating drugs — thus my near disappearance from online. Also, a weird side effect of Avastin, the backs of my calves were sore like I’d been on a long hard hike. That lasted a couple days. Apparently, it’s an electrolyte thing and I need to be sure to eat bananas and drink lots of orange juice. (Easier said than done when your appetite is pretty much zero.) On the up side, I drank more water during the early days of the week (before I started to feel worse) and that did really help with the pain in my salivary glands. So… drink more water. Check.

Anyway… I was mentioning about how long I’ll be having chemo of various sorts. MY understanding, from discussion with my surgeon, was that I’d have just six treatments (with Avastin being added on the 3rd cycle) and that then I’d be done with EVERYTHING for the 6-week washout period prior to my next surgery. My oncologist, on the other hand, is talking about just stopping the Avastin, but continuing with the FOLFOX right up to surgery. I have written to my surgeon requesting clarification. I really REALLY hope I get to quit after six. I will, of course, do whatever’s best for me medically, but I’m starting to feel like a real whiny crybaby about this whole chemo thing. I thought I was more stoic than this. Apparently not. I suppose it will all depend on what my next CT scan reveals (on October 25th).

So, that’s what’s happening with me. Hopefully, I’m starting Good Week now — and, if so, I’m going to try to get a lot done. (Bad Week is pretty much just a lot of laying around the house whimpering.)

Oh, hey… one good thing did come out of Bad Week, though! I discovered the TV show “Breaking Bad” and have been watching episodes on Netflix streaming. Great show!

Looking Good! Feeling Good!

Well, I guess I should leave it to all of you to determine whether the “looking good” part of that is accurate. A neighbor who I don’t see often mentioned this morning, “Wow… you’ve lost a lot of weight, haven’t you?” Indeed, I have lost 25 pounds since April — and not in the healthiest of ways, but hey — it’s not like I didn’t need to lose weight anyway. I say: go with it. On the flips side, I am definitely feeling good and that is quite a nice thing. Starting yesterday, I have entered “good week” territory. Yay! Hurray for “good week”!

This morning I weeded my neighbor’s garden, moved a couple of cinderblocks that were in their front yard into their garage, and took down a plant hanger that had been hanging empty on their front porch for a couple weeks. Earlier I took Strider in for his grooming appointment and he now looks like a right Bedlington.

Rehearsals on Wednesday and Thursday night went well. The way I see this all working out is that I practice a LOT during the good weeks to make up for the less practice and less neurological acuity on the bad weeks. Happily, I think all of my concerts (that I’m committed to at this point) fall during good weeks or at the very end of bad weeks — which are, themselves, almost good. I don’t have orchestra rehearsal next week (which will be a bad week) because it’s going to be just strings. This works out quite nicely for me. I do have flute choir rehearsal, but I’m not as concerned about potentially making a fool of myself there as at orchestra rehearsal. So…

Anyway. Good week. Yay! I’m currently out on the deck with my laptop and a large glass of bright orange soda. You know if you drink that stuff with your eyes closed, it doesn’t really even taste like oranges. It’s just sweet and extremely carbonated. I think I shall make a quiche this afternoon.

Too Much Information by a Factor of at Least 10

So, today and yesterday are days 5 and 6 of chemo cycle 2, and if you look back to what was happening on those days last time, the same sort of excitement is going on — only I think more on the diarrhea side of things. I took some Immodium this afternoon, and that seems to have done the trick. I suspect that, were I not so chronically constipated, I’d have “noticed” the diarrhea a day or two earlier. I guess, in a weird sort of way, maybe the diarrhea is working for me. Ever the optimist, that’s me.

I seem to be running through the side effects somewhat faster this time around. This is good.

I got hit harder with the neurological stuff this time, for sure. Even the relatively mild coolness of my flute keys is enough to send shooting electrical pains up my fingers. I’ve also got this weird neuro thing having to do with the salivary glands in the back corners of my mouth. The first bite or two of any food creates very unpleasant cramping shooting electrical pains in those corners. It’s only after I’ve had several bites and the saliva is flowing that the pain stops. I get a similar thing with my tear ducts. Happily, all of these electrical/neurological side effects are starting to fade (until next time.) So… yay.

I did have an interesting experience with eating an ice cream cone last night, though. The cold of the ice cream created a sensation in my mouth like it was somehow highly carbonated. Kind of that sharp “ping ping ping” sensation you get in your mouth when you drink something with too much carbonation. It was very weird. Not painful, though. (A couple days earlier, it would have been impossibly painful.) Weird shit, I’m telling you.