He's alive! Alive!

Hello to all my long-lost friends and family! Sorry to have been so quiet all these... years? I kind of lost my ability to write during this whole ordeal. Bethany sure can write well though, right? How about a round of applause for the world's best health advocate, "volunteer" (ahem) nurse, and partner that a person could ask for.

A quick update with more details to come soon. Lots will happen in the coming months.

First, I left the hospital in mid-August and have been recuperating at home. I left the hospital underweight, depressed, and afraid that the beast was finally going to finish me off.

It took about a month to regain some strength. They starved me for two weeks and pumped me full of antibiotics and pain meds. I had no appetite for a while and was stuck in my recliner around the clock. Now at the end of September, I have regained some weight and strength, but stamina is still hard to maintain even as we approach the two month mark. I have regained my appetite, adopted a mostly vegan diet, and am doing some work from home.

The mental toll has been harder than the physical challenges, I must admit. This is a brutal disease and its goal is just to kill everything in and around the patient. It takes a lot to fight back.

Bethany will give more details on our "next steps" with the doctors and their knives and poisons. Hint: they can't really help me much, and we're just watching the tumors that reside in my belly. The official, stated goal is to keep the disease from ruining my quality of life. The unofficial goal (mine alone, it seems) is to get every bit of this hungry alien out of my body -- by any means necessary. I've got some friends in eastern medicine helping me work toward both goals.

Thank you all for your concern and support. I am a very lucky man to have such a broad support network and groups of people who truly love me. I wish I had the strength (mental and physical) to personally thank every individual who has reached out to me and my family in our dark days. I will have that strength soon.

Better everyday, love to all.
Brian

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.