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

Tuesday, May 31, 2011

Surgery Update

(This is Ed's wife, Karen, blogging)

Ed has just come out of the operating room and is in the recovery room and doing fine. His surgeon reports that the surgery went very well. He was able to remove both tumors safely. Ed will go to the ICU for the night and then will be in the hospital through the week-end. I'm sure he will be back on the blog in a day or so. Thanks everyone for the good wishes, karma, prayers and positive energy you sent his way.


Monday, May 30, 2011

Ain't it a glorious day...

Tomorrow is the big day, and 8am is the appointed hour, when my liver gets temporarily smaller and I learn more about my tolerance for anesthesia medications and pain suppressants. We are taking yet another step along the infinite wheel of time and I am glad this continues to move forward.

I have been thinking about a lot of time-dependent things these days. Like knowing when some project is finished enough to be done - brownies and cupcakes have instructions about the length of time to bake, but they are couched in terms of a toothpick inserted and withdrawn "dry" to be the real measure. We all know what underdone cupcakes and brownies are like - really gooey on the inside. Some folks actually that like that kind of treat, but they too know when to stop baking by the toothpick-insertion test. And no, just to be clear, I am not suggesting that anyone poke me with a stick to see if I am done! It is just that sometimes we are not exactly sure when something is done, until we see some evidence.

I am not sure what evidence I need or will receive related to this cancer journey. CT scans were clear and encouraging for three full years, and then we noticed a significant bump in an antigen that marks embryonic cancer activity and the cancer roller coaster fired right back up again (or maybe we were always on it, but in one of the slow spots?). After this liver resection, I know that I have more chemotherapy, and fully expect a routine of follow-ups and scans for the coming years. But I am beginning to appreciate the mental and spiritual aspects of "being done" more and more. Not "being done" as in giving up - "being done" as in finishing with the cancer itself. I am relieved to report that nearly everyone that I know has promised to sending healing energy my way (in some form or another), and I believe that this is immeasurably helpful to me, to our community, and to the world. Perhaps the power of the mind really is our greatest untapped human resource - but that is hardly a remarkable or previously unstated sentiment.

The other night, impromptu, we had a small party at the house to "take Ed's mind off the surgery." At least 50 people showed up, dear friends from all walks of my life in Salem (and beyond). We laughed and mingled, and ate and drank. It became a kind of elaborate dance for me - greeting folks as they arrived with food and drink, trying to have a conversation with as many as possible, looking out for kid-level activities so that they too would have fun, and finally getting hug after hug from everyone as they were leaving. Real hugs - the kind where neither wants to let go too soon. It brings tears to my eyes just writing that down. Thank you, everyone.

Mary Poppins is one of my favorite fantastic musicals. Endearing story, catchy songs, brilliant imaginings. Thank you P. L. Travers and Walt Disney, for inventing a magical world where everything works out in the end.

"Ain't it a glorious day, right as a morning in May, I feel like I could fly. Have you every seen the grass so green, or a bluer sky?"

-from the lyrics for "Jolly Holiday" (Richard & Robert Sherman, 1964)

Sunday, May 22, 2011

What a week...


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. :)


Saturday, May 14, 2011

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 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.

Monday, May 9, 2011

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.

Friday, May 6, 2011

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!

Wednesday, May 4, 2011

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:\\

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.