August 7, 2011

There are not a lot of changes to report. However, I did want to give everyone a quick update. Brian appears to be healing well from the surgery. The dressings covering his surgical incision have been removed. His NG (nasogastric) tube has also been removed. This is a tube inserted through the nose, down the back of the throat, through the esophagus, and into the stomach. The purpose of inserting the tube was to keep the digestive juices out of the stomach so that Brian's bowels could rest and heal from the stress caused by the obstruction and his recent surgery. The doctors are waiting for signs that his bowels are functioning properly before they will allow him to eat or drink. At the moment, the doctors and nurses are primarily focused on managing his pain which seems to be improving a bit more each day. Yesterday he was able to get out of bed and sit up in a chair for awhile. Over the course of the next few days, the goal will be to get him up walking and moving around. Brian is keeping positive outlook and fighting very hard to get stronger. For the moment, these are the only significant updates. As he continues to progress, I will keep you informed.

August 5, 2011: Post Surgery Update

Brian and I are resuming this blog to help keep our dear family and friends informed about the recent progression of his disease. This past February a recurrence of his Cancer was discovered on a routine CT scan. The scan revealed new tumor activity along his small bowel track. Since that time we have pursued non-surgical therapies in the hopes of avoiding aggressive, invasive treatments that would compromise the good work he has done in the past two years to restore strength and good health. Unfortunately, these options have not been successful. Over the past month Brian has increasingly struggled to eat without experiencing pain, and has lost 20 pounds since the recurrence in February. A CT scan on July 14th revealed that he was suffering from a partial bowel obstruction, which at first appeared to be the result of scar tissue that had developed from his initial surgery in 2009. Since that time, his pain and symptoms have progressed. On Saturday, July 30, 2011, after a consultation with his doctors it was recommended that he be admitted to Norton Hospital. At that point he was placed on strict NPO orders (no intake of any foods or liquids) and placed on IV fluids to help nourish and rehydrate his body. His surgeon, Dr. Robert Martin, evaluated him on Monday (August 1, 2011) and after further review and consultation with the radiologist, Brian’s obstruction appeared more likely to be the result of tumor growth around his small bowel. Dr. Martin transferred him to University Hospital and began preparations for surgery. Initially the plan was to remove the tumors around the small bowel and perform another HIPEC (Hyperthermic Intraperitoneal Chemotherapy) treatment. Around 2:30 p.m. on Wednesday (August 3,2011), Brian underwent surgery. Once his surgeon was able to get a closer look inside Brian’s abdomen, he discovered that the tumors wrapped around his small bowel were too nodular (hard in consistency) to extract without compromising the function of his small bowel. He instead opted to create a bypass around the tumors to allow food to successfully pass through his digestive tract. Since the surgeon was unable to remove the tumors, he did not perform the HIPEC procedure. The immediate goal is to get Brian healed from the surgery and make sure the bypass is a successful solution to the problems caused by the obstruction. If this works and he is able to eat properly and gain weight and strength, we will begin discussions about aggressive chemo therapy treatments that may shrink and/or destroy the tumors causing the obstruction. As we know more about his recovery and next steps we will post that information on this blog.

We are so grateful for the outpouring of kindness and support we have received, and we will try to keep all of you updated. Thank you all for keeping us close to your hearts as we continue our fight. Please feel free to post any questions you may have to the blog and we will do our best to answer them in future posts and updates.

Save What's Left

This photo was taken on the one year anniversary of my cancer diagnosis. I'm wearing a shirt that reads "save what's left" -- a message originally intended to promote recycling and conservation. The slogan has taken on new meaning after surgery and chemo.

One Year Later

I marked the one-year anniversary of my cancer diagnosis in a unique and satisfying way. It is hard to believe that a full year has passed since I got that life-altering phone call on the night of 3-10-09. Time flies when you're... well, fighting for your life. By sheer coincidence, I had been scheduled for a photo shoot on the one-year anniversary of the diagnosis. So, after a full day of work (a minor miracle itself), I spent some time with my good friend, fellow cancer survivor, and professional photographer, Ryan Armbrust.

Ryan and I are participating in a project to benefit the Kentucky Cancer Program (KCP website), "a unique program that is state-funded, university-affiliated, and community-based. KCP was created in 1982 and is jointly administered by the University of LouisvilleJames Graham Brown Cancer Center and the University of Kentucky Lucille Parker Markey Cancer Center. The partnership with Kentucky’s two major academic institutions and cancer centers enables KCP activities to be based on science, driven by the latest and most accurate cancer data, and interwoven with research efforts."

I will share more details of this very cool project soon. It is good to be alive and well.

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