The latest twist

The cool thing about hating cancer is that it never fails to deliver new and unexpected reasons to hate cancer even more.

Yesterday, I went to my post-chemo, pre-scan, check-in appointment (hate cancer, love hyphens) with my oncologist. It was to have been a simple, smile-filled, celebratory visit for B and me. There were smiles of course -- Dr. Miller's gentle kindness and sense of humor go a long way -- but we also dealt with concerns and (sigh) more shrugs and tests.

I have developed some skin lesions on my hands over the past week, and Dr. Miller referred me to a dermatologist for biopsies. I suppose "referred" is an inadequate word in this case. Dr. Miller managed to convince one of the city's finest dermatologists to see me immediately. I love that guy!

My crazy outbreak is apparently as fascinating as my crazy rare cancer: it seemed like a dozen folks (docs, nurses, techs, residents, etc.) came in to my tiny exam room to take a look at my hands (and repeat the same questions). All of them were professional, friendly, and very helpful. I continue to be impressed with the UofL Health Care system.

Here's a tip for people facing a future hand biopsy: when the doctor is choosing which lesions to cut off of you, offer some feedback. If the doctor wants to cut on the middle finger of your dominant hand, ask if he'll choose another location. You see, having a piece of skin cut off this finger will definitely affect your ability to use a pen or pencil. In a word: ouch.

Thankfully, I can still use a keyboard. Plus, I think I like having a bloody bandage on my middle finger as I aim it directly in cancer's face.

I'll get the test results in a week. Details will be posted here for your holiday reading. It's cool, all Christmas stories end well. Cheers.

UPDATE: results of the biopsies were fine, but it sure sounds familiar: I have a rare condition, and no one knows the cause. Idiopathic. Oh fun. The diagnosis: Sweet's Syndrome, which has been described as "is a reactive phenomenon and should be considered a cutaneous marker of systemic disease." Yes, that sounds about right. A week of prednisone cleared up the lesions on my hands and arms, but that drug made me crazy and angry. Or maybe the cancer and all he other stuff did that. Who knows. More shrugs. 

chemo is over

No more treatments. Chemo is DONE.

I am smiling.

I may have been quiet, but I STILL HATE CANCER

... and his body gradually grew stronger, the cancer surrendered and fled, life seemed to get better every day, and they all lived happily thereafter.




Or something like that.

Here's a more detailed, slightly longer summary of the past seven months. After leaving the hospital on April 24, I spent a good month at home recovering from the surgeries and working hard to eat, drink, sleep, walk, breathe, etc. with some degree of normalcy. On June 19, I "visited" my many friends in the UofL Hospital Radiology Department for a CT Scan of my chest, pelvis, and newly-remodeled abdomen. The scan showed no tumors, and to ensure things stay that way, it was decided that the next step would be six months of chemotherapy.

So, on every other Tuesday since June 30, I've spent about 6 hours at the Brown Cancer Center to have three chemotherapy drugs infused via a "Powerport" in my chest. And then there's homework -- I leave the place with a small pump strapped to my side infusing the final chemo drug (a brutal one named 5-FU) over a 24-hour period. Then, on Wednesday evening, a home health nurse arrives to remove the IV, check my vitals, review my side-effects, and wish me well.

For the next few days, I am couch-bound, weak, hurting, and useless. It was pure Hell for the first couple of rounds, and the side effects were so debilitating that I considered quitting the entire chemo plan. The doctors responded by cutting the dosage of the at-home drug: I'd now have a 24-hour infusion rather than the 48-hour infusion of the first two rounds. The lower dosage is much more tolerable, and I've been handling chemo well since then.

The anti-nausea and painkilling meds help tremendously, but they do rob me of any amount of energy I'd otherwise be able to muster. But I'm not complaining: the side effects aren't as bad as those endured by a lot of the other patients. I experience deep fatigue, body aches, soreness, nausea, extreme sensitivity to cold, and a slow, muddled brain. I can handle that. Plus I haven't lost any hair, and I don't "look sick" which helps tremendously. The "chemo brain" phenomenon is wild, though -- will make for an interesting topic of a future post.

Generally, by Sunday of chemo week, I feel better and start to regain energy. I feel really good by the end of those non-chemo weeks. Having a full week between treatments is great -- my body and mind seem to rebound fairly well, and the week of freedom allows me to live in a way that at least resembles my pre-cancer life. I love those freedom weeks!

I believe that this schedule is the reason that I've been able to tolerate the chemo so well. I think I'd be a very weak, sick, and angry person if I had to endure that poison every week. Instead, I'm strong, optimistic, and anxious to get back to living my life and having some fun. I'm doing all I can to make that happen soon.

In addition to the treatments prescribed by the doctors, I take supplements: curcumin, vitamin E, melatonin, GNC multivitamins, L-glutamine powder, and protein shakes. My main form of exercise is walking -- often, with my life-saving dog Guinness. I also do stretches and light strength training, and I get an occasional massage. Once the chemo is done and my port is removed, I'll be able to add quite a bit to the exercise regimen. More massages too. Definitely more massages.

As of this writing I have completed 10 treatments with only 2 more to go. I'm scheduled to start chemo #11 on November 17. So, if all goes as planned, I'll be done with this particular cancer chapter in about 3 weeks. The main thing to worry about is the potential for my chemo schedule to be delayed by a bad blood test, an illness (damn you, pig flu virus!), or some other health issue. It hasn't happened yet, and I don't expect it will happen now. I've been in semi-seclusion to avoid all the germs lingering in the outside world, and I'm eating well and working hard to get healthy. Living the life of a hermit has been rough on my psyche, but it's keeping me on my treatment schedule. And that's most important.

Ready for the end of chemo. Ready for 2010.

-Brian

April 24

Just a quick post to let everyone know that Brian is home now! He'll be on a feeding tube for a few more weeks to supplement his food intake. He is still very fatigued, but overall he is doing well and very glad to be back home.

April 22nd: A Turning Point

This will be a short but sweet post. Today has been the best day so far! Brian got both chest tubes out and the doctors feel that he is still on track to get home this weekend. His WBC is starting to decrease, his spirits are up, and his system is handling the food pretty well. He is finally starting to sound like himself again. Hopefully, the next time you tune in he will be at home.

Great news to share...Brian gets to eat REAL food for the first time tonight! He is breathing better and the doctors and surgeons are pleased with his progress. In fact, they think he will be able to come home on Friday. Between now and then they will be watching the drainage from his chest tube to make sure it tapers off. They do not want to send him home with those tubes still attached. The surgeon feels that even if Brian's WBC continues to be high, he will still get to come home because his team has addressed all of the issues they felt were potentially threatening to Brian's recovery. The surgeon told us, "We treat the patient not just the numbers."

April 19th

Brian's surgery went very well today. The thorasic surgeons were able to remove the infection without cutting into his lungs, which will reduce his recovery time. Two incisions were made and the surgeons used a combination of cameras and instruments to scrap the infection off of his left lung. As the surgeon put it, it was essentially like peeling the skin off of an orange. We anticipated that the surgery could take up to four hours but the procedure was complete in just a little under two hours, a huge relief for us! Two chest tubes were inserted in the back side of his left lung to continue draining any additional fluid, but if all goes well these should come out in a few days. They will be keeping him in ICU for a day or two for observation. When I left him tonight he was resting comfortably and breathing easier. Hopefully over the next few days, his WBC will decrease significantly and we can begin talking about getting him home!