The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Friday, July 27, 2007


Sometimes, as a cancer patient/survivor/support person, you hear amazing things. Insensitive things, gentle things. Caring things, glaring things. And most of them are just unbelievable... in their tenderness or their blunt hurt. This is life, I suppose.

Today, I read Leroy Siever's cancer blog (, as I do just about every day. His journey is hard to read, even as a co-traveler. I hurt for him. But today's blog entry (27 July 2007) is worth reading because he says a lot of things that I cannot say better. (Not the anger bit, but the description of cancer's effect on living...)

Peace and understanding to everyone on this fine day.

Wednesday, July 25, 2007

Reading this summer...

So, in my spare time I have been doing a little reading. Light, summer reading... the kind that should take your mind off work and the other more-immediate cares of your life, right? I haven't (yet) succumbed to the devilish temptation to re-read the entire Harry Potter series, though there are others in my house for whom this is "Job-1." And I am not even considering the piles and pages of work-related articles and policies that occupy the bulk of my work-hours.

Nope. I am talking about the books that I choose to read for enjoyment and relaxation. In July, I have read Zbigniew Brzezinski's "Second Chance", which describes the last three US presidents' missed opportunities to advance global leadership from a position of supported power; John Steinbeck's "Bombs Away", which is an unapologetic propaganda piece written in 1942 to encourage young Americans to volunteer to serve in the fledgling Army Air Force flying B-17s and B-24s and to encourage their parents to let them do so; Janny Wurts' "To Ride Hell's Chasm", which is a completely fantastic exploration of the cultural and historical events that can drive an individual to utterly impossible feats of imagination in pursuit of loyalty and honor (in truth, the book's genre would be fantasy fiction, but the journey the main character undertakes is all too real); and finally, James De Kay's "Chronicles of the Frigate "Macedonian": 1809-1922, which lightly details the history of one of America's war prizes from the War of 1812. Throw in a bunch of newspapers and magazines, and you have my July reading list.

So what. Lots of people read lots of stuff each summer (and do a much better job summarizing and reviewing what they have read, or at least get paid for their efforts!) When I read though, I really try to put myself in the time-place of the events that I read about (even if that place is imaginary). Not so hard with the first one, since I lived through it, but still worth the effort. Try though we might, we all live in a limited-dimensional world. There are too many things going on simultaneously, everywhere, that we cannot even know about them, much less incorporate it all into the impacts on our lives. Our presidents have a lot on their plates... sometimes more than they can handle, regularly more than they need, and too often supplemented by unnecessary adventures. Thank you, Mr. Brzezinski, for reminding me of that.

Our young people are not told often enough how smart and capable they are. John Steinbeck reminded me that I never felt told that "you can't do that" as a child. Oh sure, I was told not to climb on the fence overlooking Niagara Falls, and certainly heard my fair share of, "No, and I mean it!" as a child. But I'm talking about the kind of discouragement that young people hear... about body size, about job opportunities, about achievement, and about playing together. We don't know what our (or their) futures will require in terms of skills and abilities, but we need to strongly encourage our selves and our young people to do many, many things. Building on innate curiosity and playful invention will always be the strength of our future, and our kids embody those traits. Let's do a lot more playing.

Fantasy fiction is a great escape from reality. No kidding. But it is a kind of work too. The author takes a kernel of a plot, and fleshes it out to challenge the reader. Fantasy requires whole worlds to be imagined - histories, cultures, geographies, habits, and tricks. The reader can immerse herself to whatever depth, and can be swept into an un-reality with ease. This reader, however, is too analytical for that. :) I pick at the story-line, looking for inconsistencies and foibles. It's part of my enjoyment, but it is a handicap too. The point here is that we are all driven by our pasts and our visions of our futures. We all play roles in the unwritten books of other peoples' lives, and our awareness of that fact can be both burdensome and emancipating. We need to walk gently, but confidently, into our future, and be gentle with ourselves.

Finally, historical stuff makes me feel grounded. You know, in spite of the whole eco-enviro-political disaster called modern Western life, we are really lucky folks. Just a few short decades ago, we humans battled debilitating diseases and illnesses on a regular basis. Sickness and death, especially for the young, was more often the rule than the exception... and some of the fevers were particularly nasty. Those diseases, and illnesses, and social situations, still exist in the world. And they are larger and longer-lasting than me. It is a blessing to be able to consider them, and an obligation to remain aware of them and act to eliminate them, and for these reasons, too, I am a lucky man.

Enjoy the week! It's sunny here, and I feel great today.

Thursday, July 19, 2007

Acupuncture and Massage

I thought about calling this post something clever, like "invasion of the body scratchers" or "extreme cancer therapy," but I decided that those titles would be a little disrespectful to some serious practitioners. My recent adventures in massage and acupuncture, though, do deserve a [long... fair warning!] blog entry. So here goes...

Friends, acquaintances, virtual friends' blogs and descriptions on the Internet, and caring family members have all suggested these complementary therapies at one time or another (some of you were a little pushy - you know who you are!) And some of you KNOW how much I have enjoyed massages in the past. So it wasn't very difficult to convince me of the value of massage. Acupuncture, though, was not such a no-brainer for Mister Type-A Analyst-Man...

First thing - I needed to check with the clinical trial doctors to verify that there were no restrictions in the protocols to my using these techniques during my chemotherapy. For massage, the word was that it is allowed as long as my platelet counts remain OK. And for the acupuncture, they really want both the platelet counts and white blood cell counts to be OK. Apparently, the risk of bruising with massage and acupuncture is higher than normal when platelet counts are suppressed. And acupuncture, with its needle penetration of the skin, has a risk of infection that suppressed white blood cell concentrations may not be able to counter.

(To get everyone on the same page here, the normal range for white blood cells is 3.4 to 10.0 thousand cells per microliter, for platelets it is 150 to 420 thousand cells per microliter, and, as bonus unrelated information for you diligent blog readers, the red blood cell normal range is 4.3 to 5.9 million cells per microliter. My latest CBC has my counts for WBC, platelets, and RBC, respectively, at 3.4, 149, and 4.31 - which are all at the very lowest end of the normal range or just below it. The docs are not worried until the numbers get down to about 30% of the normal range for any key indicators.) OK, so now we know that it is/was OK for me to get massage and acupuncture if I was/am so inclined. And I was. Hence the blog entry, duh!

Massage: not exactly what I expected, but then I was not exactly sure about the whole expectation thing in the first place. The massage therapist is a wonderful man who has given massage therapy to many cancer patients. In fact, he was the one that first indicated that I needed to contact my docs to get their approval. The session began with a physical/medical history - so he would know where I might have surgically-implanted devices like the PowerPort, or metal pins/plates from wild adventure days. No, other than the fillings in my teeth, and the glasses on my face, no implants other than Mr. PowerPort and he is pretty darned obvious even to the casual observer. The massage was about thirty minutes long, and he used a warming oil and peaceful music to relax me and push away the thoughts and stresses. Though a much softer/lighter touch than I am used to, I expect that I will see him at least every other week.

Acupuncture: This was quite a trip. As I have never done this before, and I am generally an analytical thinker, the Eastern tradition that acupuncture relies upon was not really on my radar screen when I was diagnosed. But the local scuttlebutt informed me of an MD that is also an acupuncturist, and she comes highly recommended, so I thought I'd give it a try. And it was OK. We discussed my medical and physical history at some length, she palpated several areas on my torso, and then started with the needles. First one to the forehead, and then a smattering down my sternum and around my abdomen. One each to the sides of my groin, then two each just below each knee and another in each foot. Oh, and one each at my wrists. These points were chosen to enhance the release of toxins and toxic energy from my body, and she opened a window so that that "bad" energy that was flowing out of my feet could escape from the room. She also applied some heat to the needles below my knees, using something I think is called a "moxa," and it felt like I was under a heat lamp on that entire lower leg. All-in-all, very interesting and I did feel a bit more energetic the next day. I have another appointment for next Tuesday (to try to help clean out the post-chemotherapy constipatory toxins, I hope). She thinks I should come in every Monday for pre- and post-chomtherapy acupuncture support, but I am still deciding how that might work for me.

So... long post this time. I trust it was/is worth it to read so much summarial drivel. Now I can feel less guilty, though, about my lame blog posting frequency. Today's chemo went pretty quickly, but I am very tired and have weird muscle spasms in my shin muscles, feet, and my right index finger.

Thanks for visiting, and I hope to post a little more frequently.

Wednesday, July 11, 2007

The people around us

Two nights in a row. I've slept (mostly) through two nights in a row now. And the heat wave outside continues to crash down upon us. But lorazepam is my friend, and the ceiling fan is my friend, and I feel almost rested again. Sleep will do that for you, you know. I still recall the sleep deprivation known as "having a newborn," and am humbled by that memory.

Then, as now, the support of friends, family, and sometimes strangers, made it possible to see and live the joy of a growing child. Without even thinking, we shared our joy through tired smiling faces, and stories of other children and other sleepless nights and other parents' journeys.

Cancer-world is a hard place, especially so for the "close-support" people in my life. While seemingly "natural" to expect the patient/survivor to need extra space, and extra support, and even extra silences, our closest supporters are often treated differently. To them, the casual question, "how are you?" becomes a time bomb, laden with expectation. As with the patient myself, this simple question asks the receiver to assess the questioner's real intent, to assess their own energy for talking about "the topic", to assess their personal maelstrom of feelings - and then deliver an answer. Is it glib? Is it profound? Is it tired? And how does the questioner feel about this answer? Do they feel put off? It's a minefield not unlike the one trod by the patient, by me, when this question arises...

I love my little corner of the world, and all the wonderful people and personalities that share it. I have never felt so strangely connected to everything as I do these days. This is an amazingly poignant result of a surprisingly unexpected cancer diagnosis. But I worry a bit about how hard this journey is for my support team. Sometimes, we all just need to forget the reality of cancer, and forget that we are dealing with a "real nasty," and just live.

"No, really, I'm fine. I'm not hiding anything from you. I just need to feel like this thing doesn't completely dominate the me, the us. If I need to talk about it all the time, I lose sight of anything else. Please, just let's talk about how hot it is, or the latest unbelievable news report from DC, or how pretty the summer is turning out to be this year. Yes, I am really OK. I'm not hiding anything from you. Really. How about that HR by Ichiro?!? Inside the park and everything. Man, oh man can that boy run!"


Sunday, July 8, 2007

Lucky day... missed by one!

I just realized that I should have posted this note yesterday! You know, 7/7/07 and all. Alas, it was not to be. Had to run around in the morning making deliveries (bed and chair to the in-laws, car to be cleaned, you know - really important stuff), and then when we disconnected the 5-FU pump (ah, that's a relief)... my energy just seemed to collapse. I spent most of the rest of the day in the recliner, with droopy eyelids, though I managed to rally for a couple of bites of steak and roasted potatoes for dinner. So far, I have had a moderate appetite and no real changes related to taste. And when I manage to start eating, I seem to be able to continue, but sometimes I am not much interested in food.

The night, though, was another story altogether. Sleep was elusive and intermittent, and I felt thirsty all the time. I heard at least three different freight trains whistle their way through town (hoooooot-hoooooot, hoot, hooooooot! before each at-grade crossing, and there must be a dozen of those). This morning, I managed to get up and function for a couple of hours - even made french toast for breakfast! - before I collapsed back into bed, under a down comforter, for two solid hours. And now I am watching the baseball game (Mariners-Oakland) and drifting around the Internet.

But I kind of wanted to write about luck. As in, what does that mean anyways? Is it lucky to have the overwhelming support of friends and family through this adventure? Is it unlucky that I have to tread this path through life? Would other choices have lead to a different today? (I have to think the answer to that question is "of course," but not necessarily due to luck.) Lots of folks got married yesterday, all over the country (and world, I imagine) due to the propitious alignment of numbers on a calendar. I trust and hope that their future lives together are more firmly grounded than that. But interestingly it seems that serious decisions like that are made daily with a nod toward lucky conditions. In a recent issue of The National Geographic, there is an article describing the phenomenal growth of the Chinese manufacturing sector, and its effects on rural lives. It appears that beyond their innate entrepreneurial business sense, Chinese business owners make major decisions are made in consultation with feng shui experts. For some reason, I thought that feng shui was more about internal living arrangements than arranging business parks and timing moves, but I apparently was wrong. Having consulted feng shui, is the business owner lucky if it works out? In the absence of feng shui, would the decision be better or worse? Does feng shui get blamed for poor outcomes?

"Luck favors the prepared" is a motto that I first remember hearing as a sales representative-in-training in textbook publishing. As with most sales positions, there are many competitors in a limited buying market. And we had to have the right products in the right hands at the right time... nothing is worse than arriving with a competitive product right AFTER a decision has been made, eh? So what, you ask, does this have to do with colon cancer? Just this... we are all given time to prepare our lives for unexpected changes. Some call this karma. Some call it luck. I call it living a purposed life (with apologies to the popular psychologies out there that aver the same thesis). Trying my best to do the right things, to live the right way, and to forgive myself for missteps. Helping out whenever I can and to the best of my abilities (even if sometime those abilities fall short of expectations). Accepting fault in others, without judgment (this one requires work, you know!), is a piece of my karmic plan.

Have a wonderful, normal, lucky week!

Friday, July 6, 2007

General update

Hi all,

One-fourth of the way done now... 3 treatments in the past and 9 in the future. Yesterday's action was a bit quicker than the previous two, in part due to a subtle change in regimen. I don't really know the details (though I intend to send an email to the study PI in order to better understand it). Apparently there has been recent published research that suggested that the sugar and salt solutions that were administered for 30 minutes prior to and after the oxaliplatin were at best unnecessary and at worst were detrimental to reducing the side effects associated with the oxaliplatin. So when they were taken off the regimen, I received an extra 90 minutes of my life back (30 minutes on each end for the actual drip, and an approximate 30 minutes involved in awaiting the delivery and hooking up/disconnecting lines). Yay! - if the research is correct that is...

Had a long-ish telephone conversation with the clinical pharmacist involved in my treatment about the half-life of the chemo. He indicated that it varied from person-to-person, but that it will take anywhere from 4 to 6 months after the last treatment for my body to flush all of the chemicals down to an "undetectable" level. This roughly corresponds to the initial math I did, which is somewhat sobering. I also asked him about the dose of steroid that I am receiving, and he indicated that it was actually LOWER than the dose I would receive if I wasn't in the study, since it reacts sympathetically with the Aprepatin (Emend). He said that after the anti-emetic trial is done (3 more treatments, I think), he would be willing to try reducing the level of dexamethasone - but that the anti-emetic properties of the drug cocktail might be affected. I thanked him and said, "let's see how the next few treatments go before we try any of that." So that's the news on those previous posts - "Half-lives" and "Steroids."

The nurses involved in my treatment all expressed surprise at the interesting scalp/nose rash that developed on the first Monday after mt last treatment. It was quite pink, and a little bit bumpy, and eventually flaked away as would a sunburn. But it only happened on the top of my head and nose (not on my neck or ears, as you would expect with sunburn) and I wasn't REALLY out in the sun all that long. A second theory involving a hat purchase at Goodwill (97 cents, and I was cold while shopping for Fourth of July regalia), but - I know you won't believe this part - I didn't wear it on my nose and it did cover my ears. Weird. My other symptoms of hiccups, and heartburn, and constipation, and finger tingles, and throat tingles, and jaw pain, are all known and somewhat expected. We are trying a different combination of DulcoLax and Sennokot-S for the constipation, and the Prilosec OTC is handling the heartburn very well. The others I must just tolerate.

On a much lighter note, our annual 4th of July bash was a sparkling success. It was so great to be able to host it again, and all the neighbors, friends, and relatives that managed to come by were so pleased to see us all up and about and looking/acting so normally. I received an extra dose of hugs, and some people came back for seconds. Being surrounded by caring people is the best medicine anyone could ever ask for, and even the folks that couldn't make it this year sent very nice notes. As I have said before - and it's important to me to repeat it - I am a very lucky guy. Here's a personal "WHOOP-WHOOP" for all of you folks.

Sunday, July 1, 2007


Well, I've had two complete cycles of chemotherapy now - that is, I have endured two rounds of treatment (IV infusion, followed by 5FU pump for 48 hours) and the following days of recovery. The recovery seems to take about 5 days, and I am scheduled for round three on July 5th. In previous bloggings, I have remarked on some of the physical aspects of this journey. This time, I am going to talk a little bit about steroids and their apparent physical, chemical, and mental effects on me.

First, you may recall that I am participating in a second clinical trial related to anti-emetics. As I understand it, the pharmacy team is trying out a new combination of drugs to control the nausea and vomiting associated with FOLFOX. As a participant in that study, I am taking palonosetron by IV 30 minutes prior to the chemo, as well as the pill forms of aprepitant and dexamethasone by mouth that morning. I continue to take the pills on day two and three (for the aprepitant) and days two, three and four for the dexamethasone. The IV-delivered palonosteron is relatively new, but it works by blocking the 5-HT3 receptors that initiate the vomiting reflex. Aprepitant, then, augments the antiemetic activity of the 5-HT3-receptor antagonist palonosetron and the synthetic adenocortical steroid dexamethasone, and it is a selective high-affinity antagonist of human substance P/neurokinin 1 (NK1) receptors. I think that means that "it helps to inhibit the central nervous system response to the chemo" (which is to evict the nasty whatever out of your body by vomiting or diarrhea-ing) by interrupting a neural signal at or near the brain. The dexamethasone supports the effectiveness of the palonosetron. In the end, it's all about inhibiting the vomit reflex that the introduction of a chemo-soup into my bloodstream initiates. So far, the anti-emetic trial's combination of drugs has been very effective. No vomiting, no dry heaves.

Ahhh. But there are side effects to these "helper" drugs, to be sure. I have already mentioned the hiccups (apparently this is a known, but "less likely", side effect of the aprepitant), weakness, loss of appetite, and constipation. In fact, it seems that both the chemo drugs and the anti-emetics team up to really constipate a person, or at least this person. I have also had pretty severe heartburn, apparently caused by the aprepitant. In an attempt to counter these physical side effects, I prophylactically take Prilosec OTC (for the heartburn) and Dulcolax and Sennokot-S for the constipation... beginning two days before the chemo and then continuing for four days after. I also drink a ton of water every day. As a bonus side effect, the dexamethasone seems to make me somewhat hyperactive while I am on it. Imagine that, a hyperactive, constipated, underweight Ed. What a mess!

Then, to top off the proverbial cake, there are additional non-physical side effects that we think are also related to the dexamethasone (the steroid). Of the many side effects associated with steroid use, mood swings and aggression seem to be pretty common. We have noticed that I get a little moody when I am taking the post-chemo pills, and that I am a little more assertive than normal in my conversations with folks. And I have had some strange dreams... Now that might not seem so odd to many people (having strange dreams, that is), but for me the real odd part is that I remember them. And vividly. Which is not normally the case with me. The latest one was an odd combination of our neighbors going on vacation, strangers moving in to their house, our garage being completely (but neatly) disassembled, telephones dialing numbers randomly, and me being unable to do anything constructive about any of it. My local dream-interpreter thinks that this is OBVIOUSLY about my feelings of loss of control around my cancer. Ya think?!??! :)

I will be checking in with the study PI this Thursday... about this stuff as well as the pharmacokinetics of the drug accumulation/elimination cycling. And if anything I said here is dead wrong, I will correct it in a later blog post. Have a Happy 4th of July, for all you Americans that read this, and Happy Birthday to Canada too.