Commuting

Last week, after that unscheduled delay to allow my white blood cells/neutrophils a little extra time to recover, we commuted our way back to chemo-world. And it's taken me a little less than a week to recognize that I am not sure I like that commute. Let's be clear, now, I have had my fill of commuting (to high school, then to college, to work, etc.) having grown up in greater Seattle. And I think I tolerated (even enjoyed) those commutes pretty well. Nothing like having some time alone, in your car, with the music/radio of your choice... traveling at 65 mph, bumper-to-bumper with 20,000 other commuters across the Evergreen Point Bridge on your way to a volleyball practice for the fourth time in a week.

But this last time commuting up to the clinic felt different. To be sure, I am actually volunteering to drive 75 minutes each way (always in traffic, it seems) in order to (a) get the highest quality treatment for colon cancer that I can and (b) to help with a clinical trial determining the additional benefit that a monoclonal antibody (cetuximab) might have over the current gold standard treatment. I do not regret this decision in the least. But I now realize that I am not looking forward to that 75 minute commute, and last week's commute did not feel good to me. I no longer feel completely confident that my body is capable of supporting the treatment each time, though I know that my team of physicians and nurses are carefully watching over my health. I am recovering from the treatments far more slowly than before, and find the tiredness to be unrelenting. And I know that each trip to the clinic is the beginning of another round of fatigue, and interesting GI behavior, and crankiness.

I know that this, too, shall pass. The next five treatments will eventually be over, and I will (slowly?) return to something akin to a normal life. Commuting will only seem to be a hassle again, and something that I am happy to be able to choose to avoid in my life. And eventually our little family may forget how long (and short) this treatment regimen was. But in the meantime, there are those five commutes to endure...

Adequate level of relief

Today's treatment was almost normal. :) I received all the toxins that were approved, and now am, uhhh, happily? typing up this blog entry to share the good news with my world. Aren't you so happy to be in a virtual world with little old *moi*? Pepe LePew is glad you're here with me!

Details, for all of the curious and detail-devouring people in my virtual and real crowds, include:

(1) Absolute Neutrophil Count (ANC) rocketed up from 1.3 to 1.6... though this is a mixed blessing and is a much smaller gain than I'd hoped for. This key indicator of the health of my immune system needs to remain at 1.5 or higher for treatment to continue, and I imagine that it will drop below 1.5 again next time (Oct. 19, for those of you that are playing along at home). If it drops below 1.5, treatment will again be delayed. However, we discussed this with my clinical trial doctor (Dr. Charles Blanke - very good, but a very busy guy), and he shared that there is are neutrophil-stimulating drugs available (Neupogen and/or Neulasta). Either of these drugs is likely to be able to stimulate enough neutrophil and white blood cell development to allow the treatment schedule to continue at the once-every-two-weeks clip. And hopefully that will mean only a two week cumulative delay before the trial ends in mid-/late November. Only downside - bone pain from making my marrow work overtime to create the additional neutrophils and white blood cells. A mixed blessing, but surely worth the outcome.

(2) In my analytical frenzy after last week's "setback," I closely read the N0147 protocol (that is the guiding document for the clinical trial, and it is supposed to be the "last word" when it comes to dosages, responses to setbacks, etc.) This led to many questions (none of which were really related to the setback, since the standard first response to blood work that does not stack up against the protocol is to delay treatment for one week). So I sent a list of four questions to Dr. Blanke, and included a listing of my side effects. Well, this led to a couple of iterations of answers to my questions (good answers, by the way) as well as some ancillary concern that those side effects had not been adequately documented over the previous six treatments (even though I had shared them, in no small detail, with each oncology nurse before and during each of my infusions). So, Dr. Blanke's clinical nurse and I had a long, comprehensive discussion of said side effects before she could get Dr. Blanke's signature on the orders that tell the pharmacy to brew up my toxin soup. Translation: additional time sitting in the recliner with no chemicals being infused. Made the day longer than "usual," to say the least.

(3) Finally, they adjusted the chemo dosages for the first time since my participation in the clinical trial began. And to be honest, I am not sure that I understand why (a) the original dosages were what they were, (b) why they were changed today and not on every chemo day, since they are based on my body surface area (height in cm times weight in kg times 0.20247) which changes due to weight fluctuations, and (c) what the effect of the decreased 5FU in my pump (4560 mg as opposed to 4800 mg) on my functionality over the next 3-5 days will be. Such an adventure that we are having now! I intend to ask several questions of Dr. Blanke related to this via email soon.

What's it all mean? I need to carefully watch and minimize stress in my life (especially the "little stuff" that adds up throughout the week). I need to rest a lot more than I have been, and minimize potential exposure to colds/infection. I need to find the energy to exercise lightly and consistently, and take more walks in the park. And I need to blog more often to get stuff off my chest... so my lovely wife doesn't need to try to crack jokes in order to lighten me up - let's just say that the stand-up comic industry should not feel threatened. I love that she is trying to distract me, but there has to be a better way! :)

Thanks for reading and encouraging me in all the ways that you do. The comments I received on my last post were amazingly insightful - so thanks for that too! I am glad to be back in the ring with the chemical toxins, and working toward completing this stage of our journey in cancer-world. And I still feel blessed that I am able to make that journey. Peace to you and yours.

Setbacks...

OK. Last Friday (8/31) was supposed to be chemo treatment #7. Didn't happen. After a friend gave me a ride up to Portland, and watched me get "accessed" through my PowerPort, by blood test results were not what they needed to be in order to meet the requirements of the clinical trial protocol. The key indicator (ANC - Absolute Neutrophil Count) was 1.3 (1300 neutrophils per milliliter) and it needed to be a 1.5. Very disappointing, to say the least. I was hoping that I would be able to power through this whole chemo-therapy thing (just like I have managed to power through all the other challenges that life has thrown my way over the years). As an aside (for all the detail-oriented bio-geeks out there): my platelet, white blood cell and red blood cell counts were steady; I lost another pound (down to 159.3 lbs); I had significant increases in two measures of my liver enzymes (unexplained now, and we will learn more next week when we try to get #7 again); my blood sugar (glucose) was slightly higher; and there was a small amount of lipids (fat) in my blood sample (also unexplained, and to be reinspected next week).

So, #7 is now rescheduled for Sept 6th (Thursday), and then the two-week regimen restarts. One of the greater pains is rescheduling all the appointments...

This setback hit me pretty hard. One of the reasons that my friend took me to Portland was due to the fact that my close friends from college and I were going to Spamalot. What a treat that was (seeing my friends and then the show)! But I was distracted the entire time by this blood test thing. And even though I know (from a factual perspective) that this is not the end of the world, and that things may in fact be better with an extra week off, I felt like I had failed somehow. I am not a fan of failure, even though I have no conscious control over my bone marrow and its ability to produce neutrophils (which are the precursor cells that support the fighting of infection). And I understand, academically, that the protocol is set up to protect the patient (uhhh... me) over the course of the treatment. I am just so looking forward to this stage being behind me.

So, once again I am compelled to remind you friends, family, and Internet blog surfers - get a colonoscopy! It's so much easier than this chemo. And go see Spamalot... those guys are insanely funny.

Side effects I could live without...

OK. I guess I could really live without *any* of the side effects. And I think I've probably mentioned a few of these before... but this is the topic for the day. :)

(1) Scalded tongue - it feels like I have a permanently scalded tongue. This sensation sometimes extends into the tips of my teeth (upper front ones), and it is most certainly affecting my taste and appetite. As a result there are many dishes that I avoid because I do not want my appetite for them post-chemo to be ruined by the non-taste of them during chemo.

(2) Nosebleed/nose coldness - every night my nose bleeds and in the morning I have a bunch of coagulated blood/snot to deal with (usually in the shower). This is slowly causing my nostrils to ache, and I worry about what this means for my blood counts, but mostly its just an annoyance. So far, only twice has this happened during the day.

(3) Hypersensitivity to cold in my throat, hands, and foot - really cold liquids and foods make my throat and tongue hurt. In fact, if I eat something cold it makes my tongue feel like it is swelling and I cannot form words as a result. (No comments necessary from friends or family that might see this as a good thing!) Also, my hands are so sensitive to cold now that I have special thermal-insulated gloves by the refrigerator so I can lift the milk jug in the morning. I then microwave the milk to warm it before I put it on my cereal. And my toes in my left foot have been beginning to tingle on the cooler mornings while I walk to work from the Transit Center. Of the three, the foot discomfort is by far the most tolerable.

(4) Tiredness/weakness - which has been increasing (slowly), but it has become more noticeable this last week than before. I am tired of being tired. This is probably due to my natural high-activity habits. I can't tell you how many times I have started to say, "I don't know why, but I just need to lie down," and then realized that this is an expected effect of the chemo. So what - I still could live without it! :)

(5) Low tolerance - I am not sure how to describe this, but I feel less able to tolerate the small daily stresses. Clearly, this is tied to the tiredness that I describe above, but that doesn't mean it isn't a distinct side effect that I would rather not have.

So,let's just say that I am managing these days. And my support crew has been phenomenal! People are just great. Period. I do not think that I would be able to do all the things that my wife has done for me and our family if the circumstances were reversed, and my daughter is a real trooper when it comes to dealing with and understanding her Dad's flagging energy and what that means for doing stuff together. I love them both very much. Our extended family and friends have also been indispensable - in offering meals, fun gatherings, and any other support they or we can think of... This particular "side effect" of cancer is an OK one... and it has and will inform the rest of my life.

So, peace to all you readers out there. I am sorry if the blog has felt silent for a while, and will endeavor to pick up my microphone more regularly. Some days it feels like everything has been said already, but clearly that is not the case.

Life (as it is) in Chemo-World

As we all know, life and living is a series of time-snapshots. I wake up whenever I do (anywhen from 5am 'til 6:30am), step through a morning (and mid-day, and evening) ritual, and then go back to bed. Not too earthshaking, not particularly boring... you might have a similar routine, or not. My point here being that we take a lot of living and of life for granted. And I am absolutely certain that I have touched on these ideas before, but bear with me. I might surprise you!

Our routines help us to adjust to and accept the bumps in the road that pop up from time-to-time. Who would have thought that a diagnosis of colon cancer would set my professional career back on track as a State employee? And how could anyone predict that that work would feel so good to be doing (again)? Not this guy, that's for darned sure. But I do miss the carefree, unscheduled time that I used to get to spend with my daughter, and heartily look forward to the end of this treatment regimen. The support of friends, family, and new acquaintances as I travel the chemo-highway-to-health is an unexpected source of warmth and joy in my life.

So, how about a little advice from the road? From two different supportive friends, I offer the following weblink to you, my reader:

http://jama.ama-assn.org/cgi/content/short/298/7/754

Hopefully, if you cut-and-paste the link into your browser, you will be electronically transported to the virtual world of The Journal of the American Medical Association (JAMA). This is a summary of some recent research on nutrition and colon cancer (especially focused on us "survivors"), but good information for all of us to consider. It is in the "what goes in, what comes out" genre of non-fiction, and considers a little of "what may happen along the way", so to speak. I share it because I care about you (and because I care about me, about my wife, and most importantly, about my daughter and our collective eating habits). The full article is also worth reading, but you gotta pay to download it, I think. :( [Just for the record, I am not giving up filet mignon just yet.]

So, what else is new from Chemo-World, you ask? Not so much, really. My blood work continues to slowly adjust downward (expected, as the cumulative effect of the drugs continues to wear down the fast-replicating cells in my bone marrow and gut). I lost three pounds over the past two weeks, but again this is expected and OK. I am lying in bed today, recovering from my 6th (halfway done!) treatment last Wednesday, which is part of my chemo-routine/life. In case that routine is not firmly lodged in your mind, here's a brief synopsis:
(1) Get up early - drive 70 minutes to Portland - check in at Cancer Clinic by 8:30am
(2) Blood drawn - if OK compared to protocol, receive chemo over next 4 hours
(3) Leave Clinic with 5FU pump attached - sleep in car during drive home
(4) Become horizontal for rest of day
(5) Work next two days with 5FU pump attached, taking anti-emetic drugs
(6) Attempt to deal with constipation and heartburn effects of the anti-emetics and 5FU
(7) "De-access" 5FU pump, and deal with extreme fatigue and lack of appetite
(8) Assume horizontal resting position over next two days, with some exercise thrown in

Quite the routine, eh? I then return to work on the following Monday. There are other interesting details, like what I have to do to take a shower with a tube attached to my chest and a pump attached to the tube... let's just say that I have become an expert in the clinical use of Saran Wrap and waterproof medical tape (imagine thin, clear Duct Tape). I only have to perform that taping procedure on two mornings each two weeks, though, and it's just another (unpredicted) part of my chemo-routine.

That feels like enough typing for today... Live well, eat well, and love each other.

You look great...

In many casual and not-so-casual conversations, I have heard that little phrase pretty often. And to be honest, I don't mind so much hearing it, really. It's a nice thing, a warm and safe thing, to hear. But it's led me to oh-so-many internal conversations about what exactly the speaker is referring to, and I know that that is not fair. But then, neither is cancer. There is a cynical part of me that wants to ask right back, "did I look so not-great before?" Or, "what did you expect to see, some emaciated version of me, some external evidence of (the tumor, the effects of chemo, my psyche as I deal with my diagnosis/treatment, etc.)?" I am not sure that "you look great" is such a kind thing to say.

I believe that everyone's intentions are for the best, and that a remark like this is not intended to be scrutinized too closely. But some days you can look great, and still be sick or feel awful. I currently live in an immune-compromised state 24/7 - meaning that my internal defenses against infection are poor - and I need to be very careful about what and where I eat, and close contact with people who are sick, and little nicks and cuts. My blood work has been exceptionally good before each chemo-treatment, but good is a relative term... "good" for a chemo-patient means that my white blood cell count (first line of defense against illness and infection) is still barely within the normal range for a healthy adult. This is also true of my platelet count (those little cells that provide the first line of defense when you start to bleed - they patch up the "hole" and form a blood clot) and my red blood cell count (good for carrying oxygen around my body and eliminating waste products through the filters of my liver and kidneys, you know, the whole *living* thing). Looking great has nothing to do with my actual health, and perhaps more to do with a perception of my emotional/psychological state, and it sounds like a superficial measure of me whenever I hear it.

I have a dear friend who recently experienced a catastrophic loss of hearing. I haven't seen him yet, but I have heard from him via email. He seems to be OK, from what I could glean from his printed words on my computer screen, and to look at him I bet you'd never know that his "new world" is a soundless one - or perhaps just a muffled one. I don't and can't know how this change affects him and his relationship to the world we share. But I do know that changes like this - a diagnosis of cancer, a complete loss of one of your senses - changes that you cannot immediately "see," are still very hard on a person. My heart goes out to him and his family as they deal with a big bump in the road of life. And I'm sure he still looks great.

Maybe it's better to say "gee, it's great to see you" rather than "you look great." My time with people is so much more valuable to me now than I ever recognized before. We sometimes struggle to express our feelings toward one another, and that little remark is certainly made with the best of intentions by people that care about me and that I care about. But we all know the saying about the road-to-hell, and paving, and good intentions...

Thanks for reading this drivel. My mood is still very good, and I feel good these days. The "off-week" after chemo is a time when things begin to feel "normal" just a bit. I needed to get this one blog post off my mind, so to speak, and now it's done. Have a great day!

On distraction...

I generally have a simple morning routine. That is, I drag myself out of bed after some kind of fitful sleeping, perform my morning ablutions (these differ somewhat when I have my portable 5_FU pump attached), eat something for breakfast, make my lunch, and head out the door to catch a bus ride halfway to work. The walk to my office from the transit mall is about five blocks, and I usually plug myself into my iPod for a little musical interlude prior to the workday. Kinda sets the tone for that section of the day...

During my walk from the bus stop to my office early one morning, I distractedly noticed that the sprinkler system for the Capitol Mall green space was on, and that it made a lot of interesting mist rainbows in the early sunrise. Quite pretty, actually, and the rainbows seemed to dance together every so often (or maybe they were combining front-to-back, I don't recall exactly). The music in my ears, the dancing rainbows, the warm sunshine... very mellow and distracting.

Chsssshhht... Chsssshhht... Chsssshhht... Sound familiar? The sprinkling system has a rhythm of its own, and was mildly noticeable over the music in my ears. But I really didn't pay much attention. After all, the landscape workers are very good about making sure that the water mainly lands on the grass and does not sprinkle the concrete. I continued to walk toward work, following the paving stone pathways, and even hesitated once when one of the sprinkler jets appeared to be headed my way. It stopped (appropriately) before I would have been hit and returned to its starting point with its staccato ch-ch-ch-ch-ch-ch chatter before resuming the steady chsssshhht-chsssshhht-chsssshhht rhythm.

I walked over some damp sidewalk/paving stones to await the crossing signal, paying little attention to the sprinklers, and waited for electronic permission to cross the street. The sun was still warm, and several cars were awaiting the light signal to proceed on their merry way to somewhere else... Imagine their occupants' surprise and delight to see a man (yours truly) take a direct hit from the sprinkler system. Jacket, tie, shirt and pants, were instantly not-dry... but I had a bemused smile on my face. Sometimes, it is just plain good to be distracted, and the minimal dousing with water didn't hurt me in the least.

So, I apologize to all you folks out there in the land of weblogs, who may have interpreted my silence over the past few days as indicative of some kind of trouble in my world. I am doing well, though the chemo-therapy seems harder these days. I am trying out some cancer-sensitive exercise and flexibility training, and have met a WONDERFUL trainer that I hope to be able to work with over the next several months. And work has been busy and challenging, which are both good things. In short, I have been distracted. :)


Chsssshhht... Chsssshhht... Chsssshhht...