If You Give A Mouse A Cookie...

If you give a mouse a cookie, he's going to ask for a glass of milk
Laura Joffe Numeroff, If You Give a Mouse A Cookie

If you give a scientist some data, he's going to graph them.

Gracias a mi amigo madrileño for graphing the CEA levels.  Some of you are asking, "Where are the controls?"  Well, this is a case study, no controls and n=1.  But we'll still write five paragraphs of conclusions, won't we.

I searched PubMed to find correlations between CEA levels and prognosis.  The most recent paper (from Korea) concluded that patients with a decline in CEA levels after surgery fared somewhat better than patients who did not.  The study included 352 patients. It's unfortunate that, with an estimated 100K new cases of colorectal cancer per year in the US, there is no large, accessible database to capture simple clinical data for estimating prognoses - but that's a rant for another time.

I have a stack of printouts from all my blood work, going back to July.  Maybe I should send them to Madrid and we'll get really nice graphs of my blood counts, hemoglobin, etc.

FOLFOX Round 1

The first FOLFOX treatment started Tuesday and ended Thursday.  I reacquainted myself with the infusion pump and the little tricks about how to wear it and where to hang it when I sleep or shower.  Overall, this first round went well.  I had just a little of the cold-sensitivity.  My fingertips tingled a little on Tuesday evening, when I took off my gloves outside to make a phone call and again on Wednesday morning in the cold hallway at work.  Yes, I finally put in a full day of work, but I was exhausted at 3:30 PM.  The cold sensitivity didn't last all Wednesday.  I expect that to change, since the side effects can be cumulative.

To pre-empt the nausea, I'm on anti-emetics.  I get i.v. Emend during the infusion (day 1) and take it on day 2 and 3 in the morning.  I also take Kytril in the evening.  With each dose of the enti-emetics, I take dexamethasone to enhance the effect.  Dex is a steriod, so if I start breaking my keyboard, I may have to take a drug test.  I'm not sure how that helps the Emend and the Kytril.  Any pharmacologists out there?

I still have the back-up drug Prochloper, in case I still feel nauseated.  But they steered me away from the Lorezapam.  Lorezapam is the generic for Ativan, the one that gave me hallucinations in the hospital.  It's better that I stay off that.

Chemo II: Return Of The Pump

5-FU is back and he's brought some friends!

I'm about to start the next set of chemo.  There are 12 treatments in all and each lasts three days.  This regimen differs from the previous in a couple of ways: I'll be on three drugs instead of one and the treatment will be for two days every two weeks instead of five days per week.  On day one, I'm hooked up to my old friend, the 5-FU continuous infusion pump.  I'll also get an leucovarin and oxaliplatin infused over three hours.  On day two, I'll continue to wear the pump and on day three it will be disconnected.  I should be finished in mid-July.  Here's more on the drugs:

• 5-FU (5-fluorouracil), which I was on last time, inhibits RNA and DNA synthesis.
• Leucovorin is a derivative of folic acid.  It enhances the effect of 5-FU and prevents neural tube defects in developing embryos (another way colon cancer is like pregnancy).
  
• Oxaliplatin also inhibits DNA synthesis, maybe by alkylating the DNA (the FDA approves drugs based on efficacy, often without knowing exactly how they work in vivo).
  

Oxaliplatin has some miserable side effects.  There's the run-of-the-mill stuff, nausea, diarrhea, reduced white blood cell counts.  Then there's the neuropathy. I'll have an extreme sensitivity to cold, such that I won't be able to take anything out of the refrigerator without wearing gloves.  I shouldn't take things out of the fridge anyway because if I ingest something cold I'll feel like I'm suffocating.  Then, as the weeks go on, I'll start losing the feeling in my fingertips and toes.  I'll have a hard time buttoning a shirt, tying my shoes, and doing other fine motor skill tasks that we take for granted.  Basically, I'll fail a field sobriety test without drinking.  Another side effect is hearing loss.  So, if I were to have a field sobriety test, I wouldn't even hear the policeman's instructions.

I've been a little disappointed in my therapy so far - not the efficacy, but its age.  5-FU, radiation, and surgery have been used against cancer since the 1950's. In practical terms, this is like driving a car with manual windows and door locks, no A/C, and an AM radio (in other words, Pasco, like your last rental car).  Sure, it will do the job, but it's boring and unsexy.  Other cancer patients are getting interferons, interleukins, and things that end in "mab" and "ux," while I was getting grampa's chemo.  Oxaliplatin, however, was approved in 2002.  So, finally I'm getting a 21st century drug.

Declining Numbers At An Even Rate

Bonus points for knowing the song reference without using the interweb.

Before I get to the numbers, let me get this off my chest (literally and figuratively). I HATE TAPE!  I mean the surgical/medical kind.  Apparently, though, nurses and phlebotomists get AIG-type bonuses tied to the number of rolls of tape they use per year.  At my last blood draw, the lab tech used three five-inch strips of tape on my forearm: one strip to hold the tiny wad of gauze in place and the other two to hold down the first.  In the hospital, the nurses taped down the i.v. line to withstand a category 5 hurricane. And when I'm on the chemo pump, the needle going into the port is secured to my chest with a rectangular 3M Tegaderm bandage (duct tape relabeled for medical use)  that is then held in place by, guess what, more freakin' tape.  It's no surprise that now, four weeks out of the hospital, I'm still finding sticky bits of tape adhesive on my skin.

Why am I complaining about this?  Because I have hair on my arms and chest (and you wonder why I need more percocet).  Now I'm not one of these metrosexual guys who shave their bodies, but when I start chemo again, I'll have to shave my chest to minimize the tape damage.

OK. Rant Over.

The aforementioned blood draw was at my most recent visit to the oncologist.  In addition to the usual blood counts, they tested my carcinoembryonic antigen (CEA) level.  CEA is a protein that is present in very low levels in healthy people (5 ng/ml or lower is considered normal).  In colorectal and other cancers, CEA levels are elevated.  So physicians use these numbers to gauge how well the treatment is working.  Here are my CEA scores since this thing started:

Pre-chemo/radiation (August 09) - 64
Post chemo-radiation (October 09) - 12.9
Pre-operative (December 09) - 2.5
Post-operative (February 10) - 1.2

So I've been back in the normal range since December.  This confirms the results from the CT and PET scans.  Did I mention how much tape the radiology techs used for the i.v. lines?

"If there's anything I can do..."

Many of you have made generous offers of support.  I will now take you up on them.  There is something you can do - take care of yourselves. 

Today, February 4, 2010 is World Cancer Day.  So, for those of you over 40, it's a good day to make an appointment with your doctor to get a mammogram and/or a colonoscopy (guys, just get the colonoscopy).  I know this may not be what the guidelines recommend, but I can't be objective about this.  After all, I became a cancer patient at 43.

Call your doctor and check with your insurance company for coverage.  Don't be a wimpy.  One colonoscopy every five years is not a hard thing to do for your health and your family's peace of mind.  If you're reluctant to do it, just think of what I've been through: two colonoscopys, two CT scans, two PET scans, chemotherapy and radiation, and one surgery in six months.  If I can go through all of that, surely you can get one test.  Look, when you have cancer, people call you "brave" and a "fighter" and all sorts of encouraging labels.  But I really don't want you to join this club. The dues are too high and T-shirts aren't that great - they're one-size-fits-all, they open down the back, and you can't keep them.

And I'm not the only one asking you to do this, Dave Barry is too.

Alles Klar, Herr Kommissar

I just got a call from my oncologist's office - literally, like ten minutes ago.  The results of the CT and PET scans came in.  All clear.

So there are no tumors that were detectable by the scans.  Most likely I'll still undergo the next stage of chemotherapy, because (1) that's the standard protocol) and (2) I've wanted to treat this aggressively since day 1 and (to quote Tom Petty again) I won't back down.

I also had a follow-up with my surgeon, which was probably the last time I'll see him.  He wanted to know if the surgical wounds are healing on schedule (they are) and if I had any post-surgical complications (I don't). I did get a lovely parting gift, a new prescription for percocet.  Maybe I'll bring some to Lot 8 for a tailgate.  Opiates and beer, combination therapy.

More Scans

I had PET and CT scans again - more procedures for which I couldn't eat or drink anything for hours before, except the wonderfully delicious barium "shake."  It doesn't matter how many new flavors they come up with, the thing still tastes, at best, like liquid cardboard and at worst like old, dirty, moldy cardboard with artificial fruit flavor.  I drank about a half-liter last night and another half-liter this morning.  Just when I thought I was finished, they had me drink another cupful before the scan.  The only good thing to say about the PET and CT scans is that I didn't have to prep my chitlins the day before, as with a colonoscopy.  Nevertheless, the scans are something I have to get used to because, once the next chemoregimen is finished, I'll undergo these scans every three or four months initially, with the frequency tapering of to six and then 12 months.  Actually, there is another good thing to say about the CT and PET scans, I didn't have to wear a hospital gown and I kept my clothes on.  I think that was a bonus for the radiology tech too.

Doctors

I had a follow-up with my primary oncologist at the end of last week.  My blood counts and vitals were normal and there wasn't much to discuss.  I also have twice weekly in-home nursing visits at which she checks my vitals, which are normal.  Not too long ago, colon cancer surgery required a two-week hospital stay, but someone figured out that it's cheaper to send patients home and have a nurse visit them.  I have no objections, because I couldn't spend another week in the hospital.  The food is OK, but the TV channels are very limited.

One of the nicer things about the hospital, though, was the morphine infusion.  The machine was set to give me a continuous supply, and I could get a bolus by using the on-demand button.  I could only get the bolus in ten minute intervals and the machine would chirp when it was delivered.  So I would press the button, listen for the chirp and then press it again every 30 seconds until the chirp sounded.  It was more entertaining than whatever was on TV.

My daily schedule is pretty simple. I wake up at 4 AM to take some percocet, try unsuccessfully to go back to sleep, and then spend the rest of the day reading, watching TV, occasionally eating, and going for a short walk.  I squeeze in a shower somewhere in that routine.  During this time, I started thinking about the number of physicians and surgeons I've seen since June.  The list doesn't include nurses, physician assistants, patient care techs, etc. So you can imagine just how many medical professionals I've met.  Here are the docs, roughly in order of appearance.

1. Primary Care Physician
2. Gastroenterologist I
   
3. Anesthesiologist I (colonoscopy)
4. Pathologist I (colonoscopy sample examination)
   
5. Primary Oncologist
6. Consulting Oncologist I (Mrs. 270's cousin)
7. Radiologist for PET and CT scans
8. Radiation Oncologist
9. Consulting Oncologist II (gastroinestinal oncologist)
10. Gastroenterologist II (endoscopic ultrasound)
11. Anesthesiologist II (endoscopic ultrasound)
    
12. Consulting Radiologist (friend from college)
13. Pediatric Infectious Disease Specialist (my picture of hope and her expertise iis useful because I'm so childish)
    
14. Colorectal Surgeon
15. Anesthesiologist III (surgery)
16. Pathologist II (surgical sample examination)
    
17. (and 18-20) Surgery Residents

Hooray for a good health care plan, although numbers 6, 12, and 13 are unpaid counselors.

Home

Thanks for the postive comments and good wishes.  I've been home since Sunday afternoon.  The surgical stuff seems to be healing, i.e. no bleeding, fever, unexpected pain.  I can't do much other than lie or sit aound.  Sleep still doesn't come easy and I have to get up a couple of times each night to take a Percocet.  I'm pretty much awake during the day.  So here's how it unfolded.

Saturday, January 2.  I knew that Saturday's dinner would be the last one I would enjoy for a long time.  So the family went out and I had a Caesar salad, a rib-eye (medium) with a loaded baked potato, and a Sam Adams.  I enjoyed all of it.

Sunday, January 3.  This was prep day and I couldn't eat or drink anything that wasn't prescribed.  Because I had to be admitted at 5 AM, we decided to spend the night at a hotel-like facility in the hospital complex rather than wake up really early and hope for no accidents on 270 or the beltway.  So, after dropping off the kids at their grandparents' house in the afternoon, we headed down to Washington Hospital Center.

Monday, January 4.  We arrived at the admissions office at 5 AM, about 20 minutes before any of the staff did.  When things settled down, they asked me a few standard questions to verify my name, DOB, address, and any drug allergies.  A short while later, I and a few other patients were escorted downstairs to a surgical waiting area.  After about two minutes, I was escorted to another surgical waiting area where they asked me a few standard questions to verify my name, DOB, address, and any drug allergies.  After that, they took me to the surgical prep area, when I dressed for surgery, had an IV inserted, and where they asked me a few standard questions to verify my name, DOB, address, and any drug allergies.  My surgeon came by to see how I was doing (or maybe to make sure I showed up).  We had a nice chat and then he left.  The anesthesiologist then came by and asked me a few standard questions to verify my name, DOB, address, and any drug allergies.  Then the OR nurse came by and, well you know what she asked.  They wheeled me into surgery and I really don't remember what happened after I got on the table.  The surgery lasted five hours and I woke up sometime after that.  I mean, I must have woken up because I'm writing this, but I don't remember much of anything from that day.

Tuesday January 4.  This and the next few days were OK.  I didn't feel much pain because of the morphine drip and the push-button boluses that I could self-administer every 10 minutes.  I didn't have much of an appetite during my hospital stay, which was to my benefit because the food - clear liquids, then full liquids, then solids - didn't taste at all like food.  I didn't sleep very soundly while in the hospital, and whenever I did seem to fall asleep, a nurse awakened me to administer drugs or check my vitals.

Wednesday January 5. Pretty much the same.  The excitement came that night when, along with the pain medication, I requested Ativan to help me sleep. It's what the chief resident suggested.  Well, Ativan - by itself or with other meds - can lead to some pretty interesting side effects. At some point that night I began to hallucinate and pulled out my IV and catheter.  Somehow, the nurse managed to subdue me, re-insert the tubes, and calm Mrs. 270.  I thought it would be like something on TV, where the patient gets really aggressive and six orderlies hold him down while the nurses kick him unconscious, but I was just stubborn and uncooperative.  Mrs. 270 would say that it's normal behavior.  After that, nothing exciting or interesting happened until I was discharged on Sunday, January 10.

Reading, Writing, and Recovery

Dr. Rumack: You'd better tell the Captain we've got to land as soon as we can. This woman has to be gotten to a hospital.
Elaine: A hospital? What is it?
Dr. Rumack: It's a big building with patients, but that's not important right now.

Airplane, 1980

I'm having surgery on January 4 and will be in the hospital for about six days.  I'll probably be doped up and unable to do much, and I'm not sure what TV channels the  hospital has.  So I may take a book or two, in case I'm alert enough to read. When I get out of the hospital, I'll be home for a couple of weeks, so I'll have time to catch up on my unread stack.

Over the years, I've accumulated a pile of books that I haven't yet read. Every time I enter a bookstore, I tell myself that I should finish the books I own before buying new ones. Nevertheless, I proceed to the sale table and look for good deals.  So why, you ask, am I in the bookstore in the first place?  Buying a latte, silly.

So I'm going through my pile of unread books to decide what to include in the:

Surgical Recovery Reading List
(in no particular order)

It's Not About the Bike. Several people have recommended Lance Armstrong's account of his experiences with and after cancer.  I figure that with all the LiveStrong gear I have, I should read the book too.

Band of Brothers:  Don't spoil the ending by telling me who won WWII (sag mir nicht, wer das Krieg gewonnen hat).  Speaking of Stephen Ambrose, I may add Undaunted Courage to the list, if I can find my copy.  Undaunted Courage is about two Virginians, Lewis and Clark, who travel west to spread their brand of right wing conservatism.  As a result, the midwest and the mountain west are made up of red states.

The Hobbit and the Lord of the Rings trilogy.  I read these in 1982, so it's about time to read them again.  I have some really fancy hardcover, boxed editions of the books.  But there's no way I'm getting those pages crinkled and the maps torn.  So I bought the paperbacks at a used book sale ($2 each).

The Twilight saga: No, this isn't on my list.  I just wanted to see if you're paying attention.  This series is popular among the kids who grew up with the Harry Potter books.  Apparently, witchcraft is the gateway occult practice to vampirism.

The Road.  I read Cormac McCarthy's No Country for Old Men before it became a MAJOR MOTION PICTURE!!!.  I can't get used to his refusal to use quotation marks and sometimes can't figure out whether the text is dialog or narrative.  But The Road was $3 at a used book sale, so I guess I can put up with the indignities of unorthodox punctuation.

Cold Mountain: I think this is a sequel to The Snows of Kilimanjaro in which the main character rebuilds his airplane and flies off the mountain. It's not? Anyway it was $1 at the Germantown library's "save them from the incinerator" sale.  Yes, we have a library in Germantown.  No, it's not just coloring books.

Sale table, used book sale, library sale. You get the theme here right?  I'm cheap.