What a week...

Wow.

Last Monday evening (5/16), I paid a long visit to the emergency room due to gastrointestinal distress (painful gas and diarrhea) that had us and my oncological team worried about bacterial infections and suppressed immune systems. After several hours, it turned out to be just that - GI distress and gas. But we were quite concerned about the possibilities related to my scheduled surgery, and were happy to be overly cautious. I was (and am) quite focused on getting to next Tuesday (5/31) for my appointment with a surgical team and their scalpels. It was also good to find out that I did not have "Clostridium difficile", also known as "CDF/cdf", or "C. diff", which is a species of Gram-positive bacteria of the genus Clostridium that causes severe diarrhea and other intestinal disease when competing bacteria in the gut flora are wiped out by antibiotics. This would have caused me to be prescribed a very strong antibiotic, and may have sidetracked surgery.

So, fast forward to Friday, when I am meeting with a podiatrist to help me understand the painful toenails (large toe on both feet, and second toe on my left foot) that had been going on for several weeks. I thought them to be a side effect of the Erbitux/cetuximab treatment that was also causing my acniform rash and extra-dry skin and had been applying antibiotic ointment to them, but it turns out that I had developed ingrown toenails on all three toes simultaneously (and that the triple antibiotic ointment was making things worse)! So, said podiatrist quickly numbs those sorry toes with lidocaine, and then takes out giant toe scissors and chops out 1/8-inch sections of each toe - all the way down to the base of the nails. Bleeding ensues... as well as the application of a dollop of bacitracin under a large band-aid for each toe. "You should be able to walk around now, just keep a dry band-aid on them until they stop bleeding. The pain will now be noticeably reduced." Sure enough. But seriously, three ingrown toenails at once?!?

Then, this morning (Sunday, 5/22), as I am finishing a brief shopping trip, I quickly develop a pain in my right middle back that is incapacitating. It went from what felt like a muscle twinge to agony in about five minutes, and I was barely able to negotiate the short drive home. I was soon writhing in pain (on the couch, the floor, everywhere) trying to find relief. My wife was a saint, arranging for our daughter and getting ready to call 911 when I told her it would be faster just to head straight to the ER (again). After a speedy check-in, I was hooked up to some IV meds (toradal, dialadid, and benadryl are my new best friends) and the pain eased. Turns out I was passing my first kidney stone - first both in time (never did THAT before) and in number (apparently the CT scan showed that there are three other stones in my right kidney). Gee - that is such nice news. But at least I now know what it is and that the pain does pass even if it is hardly tolerable. AND I now have on-hand pain drugs that are to be administered at the first sign of a repeat performance. Not looking forward to that so much.

But the most amazing thing is that none of those events seem to be getting in the way of next week's surgical intervention related to my liver mets. Unbelievable. And as a bonus from today's visit to the ER, I now know that the liver tumors are reduced even further (to a little over 2 and 3cm in length, down from original sizings in the 6+cm range). Some sunshine in an otherwise gloomy week. :)

Peace.

In between

That is my status right now. I am in-between the first chemotherapy round and the surgery to remove my two reduced tumors. The chemo has halted, and I am slowly beginning to look familiar in the mirror, thanks in some part to a knock-out regimen of Prednisone.

(Prednisone is a steroid. Steroids are a group of hormones with similar chemical structures. They are normally produced by your adrenal glands, located on top of your kidneys, and your reproductive organs (ovaries and testicles). Steroids help control metabolism, inflammation, immune function, salt and water balance, development of sexual characteristics and your ability to withstand the stress of illness and injury.

One of the steroids produced by the outer portion of the adrenal glands is called cortisone. It normally helps regulate the body's salt and water balance and reduces inflammation. Introduced in 1955, prednisone is a man-made replica of cortisone. The adrenal glands normally produces an amount of steroids equivalent to about 5 mg. of prednisone a day. When prescribed in doses that exceed natural levels, prednisone suppresses inflammation and can help treat a variety of diseases such as severe allergies or skin problems, asthma, arthritis, ulcerative colitis, and Crohn's disease. Prednisone is also used to help prevent rejection of organ transplants. - from gihealth.com online.)

Since I am on a starting dose of 50mg, I will tell you that it also jacks the heck out of your energy (read, Ed is more frenetic than usual, and has not slept well for the past two nights) and plays havoc with all kinds of other stuff. I am supposed to wean myself down by chopping up the horse pills in the coming days, and hopefully that will put an end to the acniform rash that is on my chest and thighs - as I said, my face is clearing up already.

But there is this other in-betweenness too... the "thinking about major surgery" part. I am both excited and afraid about May 25 and then May 31. On May 25, we go up to OHSU for the pre-operative activities. I get a CT scan and its results (hoping that we find only the two smaller tumors in my liver and nothing else that appeared over the past three months), and then have another consultation with the surgical team. I imagine that this is where I hear about all the potential risks that accompany surgical intervention (like that will cause me to re-assess my decision?!?) and other stuff. Then there is the surgery itself on May 31... consciously deciding to render myself unconscious for several hours while highly-qualified and experienced doctors cut and poke around my abdominal cavity. Unfortunately, I have very clear memories of the post-operative recovery and the potential for excruciating pain. Not something that this boy hopes will repeat this time.

That's all for today. Maybe its time to do some weeding.

That allergic time of year...

It almost makes me want to break into song...

"It's that time of year, when the world starts to sneeze, every sniff you hear, seems to say... pollen weakness, may your sinuses congest!"

(apologies to the Carpenters for rewriting a verse from "The Christmas Waltz")

This is the time of year when I usually cannot tell if I am coming down with a cold or what. Mild headaches, post-nasal drip (isn't that such a lovely description!), sneezing, sniffles... could be allergies, could be something else? Well, this year my body is so messed up on anti-everythings (biotics, emetics, nausea, etc.) that I cannot tell what the heck is going on with anything. I am sure looking forward to the carefree, simple days when I can wonder if it is a cold or a mild allergic reaction to pollen. Woo-wee!

So, that was all I had on the allergy topic. Sorry if you had hoped for more brilliance there. Alas, I think I used it all up on the song. :)

But, as a special bonus treat for staying with this blog post, I will now reveal that I have a severe distaste for dry skin. Especially dry skin on my feet. And the effect of the drying out on my finger- and toe-nail beds. Oweee! And cracking feet! Give me a break (pun noted)! My right heel has enough cracks to feel like a dry lakebed (you know, where the mud cracks apart and it looks crazy?) And then, on top of the cracking, I have a compromised immune system that barely is keeping up with my day-to-day exposure to germs, and cannot handle all of the skin-cell rebuilding that it takes to heal the cracks. Let me tell you, this is something to WHINE about.

There. Took care of that little public service message from Ed's Cracked Skin, Inc. (the sponsor of today's blog on allergies).

Have a great day. Really. And forget about the allergies. That will surely make them go away, if the quantum physicists are right.

Today at OHSU

We are now off chemotherapy for the time-being and in the official "get ready for surgery" phase of the adventure. Karen and I met with Dr. Billingsley this morning, and he decided that I am as ready (chemotherapy-wise) as I can be, and that we should get going. That means a CT scan (scheduled for May 25th) so that he can get a detailed look at the position and size of the tumors. Then I will be anesthetized and resected on Tuesday, May 31st at OHSU. I expect to be at OHSU for 5-7 days, and then will be recovering at home for several weeks. Apparently liver surgery is not for wimps. Just for grins (and to chase down any more cancer cells that cannot yet be detected), we will have another six chemotherapy treatments after I have sufficiently recovered from the surgery. But maybe without the Erbitux/cetuximab (if there is ANY justice in the world)...

I am still awfully tired, and do not have enough energy for witticisms or semi-profound connections to the larger world. Sorry about that.

But this is good news, and I am happy to be more in-the-know about my near-future. Now, if the rash, fatigue, and constipation would just ease up a bit. :)

And July 4th is definitely ON!

Blog blather

So, I am talking to my friend Danielle today, and she mentions that she is catching up on my blog, and that it is so great that I can write my way through this... and I realize that I have not written in the blogosphere for, ummm, a while. Things Must be happening, right? I mean, there's chemo and stuff - and it must be doing something, right? Ed --- are you there?

Yup, here I am. And I have been a VERY BAD blogger. After a little bit of non-blogging, people begin to text and email me directly. And being me, I respond. But then I am tired of talking about the "me" of this adventure, and have not been telling the proverbial world how things are. Well, they just are. I am mostly able to stay engaged in things, though I am quicker-to-prickly than I think I usually am. I have been able to stay with my exercise program (moderated by two excellent trainers at Salem Hospital). I can easily say that I am now stronger than I have been in many years, and have shed 10 pounds. This, I think, is an OK thing (the weight loss) because I am no longer drinking alcohol. There is a nice balance in there somewhere... as in I do not feel the least bit guilty about chocolate ice cream after dinner. :)

But, there are still some side effects that plague me - the fingertips and feet that are splitting open due to dryness, the rash that is most prominent on my face (but also spans my chest, upper arms, and thighs), the constipation, the general coldness, and the fatigue. My poor family has to endure my repeated tiredness and the weary looks that I give them. I am sorry for that.

So, I have now had six full treatments of FOLFIRI, and a total of twelve treatments of Erbitux/cetuximab. We see the surgeon and his team for a consult on Friday morning - and I may know something else after that. Right now, we are in a holding pattern on summer plans - awaiting the date of surgery to make any semblance of a plan for fun and frolicking...

See you after Friday!

PS - RIP to fellow cancer traveler Derek K. Miller. Stage 4 colon cancer. Eloquent blogger. Fellow citizen of Planet Earth. http:\\www.penmachine.com

PPS - Thank you to those of you that patiently awaited a blog update and did NOT contact me by other means. I will be a better blogger. I promise.

Thin skin

When your skin is dry and flaking all the time, and your face and scalp seem to shed a pound of flesh each day, it does not take too much imagination to think of being thin-skinned. I am pretty sure that, between the weekly cetuximab doses and the twice-daily doxycycline pills, I have never had such dry skin, and I would be surprised to learn that I have a normal number of skin layers protecting me from UV rays and what-not. And then there is the daily ablution and cover-myself-with-moisturizers activities that suck about thirty extra minutes from each day, which is enough to wear off the skin flakes even faster, and wonder how I would handle the daily application and removal of makeup.

But wait, that is not all! In addition to the physical effects of skin-thinning, we have a bonus of general personal prickliness - which I attribute to the fatigue of having chemical poisons pulsing through me on a regular basis, and the burden of thinking about an uncertain future for me and my loved ones. That is more sucky than the skin-shedding, in my opinion.

But enough complaining - on to the latest news! Well, there isn't any latest news. We talked with my oncologist on Wednesday pre-treatment, and she confirmed that the tumors are shrinking (though I had more detailed info than she shared with us) and that my blood work is quite good (though there was a slight drop in my phosphorus levels). She had spoken with the liver surgeon, but was uncertain about the means to decide between two additional chemo treatments (one more after this one) or four additional treatments. It made sense to all of us that there would need to be an additional CT scan, but her experience made her uncertain about getting one after just two more treatments and he had not been clear with her about that. She is checking in with him, and we should know something more soon. I imagine that we will need to take another trip to OHSU for a secondary consult in the near future. In any case, there will be a short (2-3 week) recovery period after the chemo in preparation for the surgery, and then another month to recover from that before we start chemo again. Woo-hoo.

So, working through things and living day-to-day... trying to exercise, trying to stay balanced, trying to remember things as the chemo-brain returns. Just your normal chemo experience, round two.

Preliminary good news

Today I underwent my first post-diagnosis CT scan. As I have certainly blogged about before, this involves a four-hour no-drinkee period and a one-hour drinkee-the-barium-solution period (which, by the way, has actually progressed from the detestable barium shake to a much-more-palatable barium-laced raspberry kool-aid). The scan was simple, especially with my PowerPort, and I was out before we knew it (with a dose of directed radiation that is hundreds if not thousands of times higher than most of the radiation that the US is detecting from the unfortunate Japanese reactor situation). I am profoundly unworried about the cumulative dosage of radiation that I am receiving intentionally.

But enough with the long-windedness already! I heard from my oncologist's office that the results are good, and that the tumors are shrinking demonstrably. They will confer with the liver surgeon between today and next Wednesday, when we will discuss next steps and so on. I believe that I will have at least one more chemotherapy treatment next week, but today's news means that the first phase of cancer, part two, is proceeding apace.

Thanks to all for the support via prayers, karma, thoughts, and hugs. I am somewhat relieved. :) The anxiety of not-knowing is so hard for me.