Luckiest man on earth

The weekend of my birthday, my greatest pals Amber, Marty, Jon, and Juliet held a wine and cheese “funraiser” for me and invited my friends in CA.  They raised over $3000.  My best friend and former co-worker Matt passed the hat at my previous job.  My old colleagues in San Francisco contributed over $800.  On the east coast, Alex and I had a birthday fundraiser that same night as the west coast party. Our friends in New York donated over $1300.  Not to mention, my family who has been providing substantial monetary support and goodwill since my diagnosis.  I count myself lucky to have such an incredibly generous and supportive network of friends and family.  I am truly blessed.  Thank you. 

Surgery

On Friday Alex and I met again with my surgeon.  The surgery will be a lower anterior resection to remove the tumor and some lymph nodes.  It will take about 5 hours.  It’s scheduled for January 12 just over 8 weeks after my last radiation treatment.  Why the wait?  The reason is because the radiation is still conducting a nuclear war on my tumor.  They will put in a temporary ileostomy (bag from the small intestine that will divert intestinal contents so that the surgical area can heal).  If possible the surgery will be done laporoscopically via my back door (i.e. with a camera and small incisions), which has a faster recovery rate.  Otherwise I will have a traditional open-abdomen surgery.  The risk of a permanent colostomy is low. 

I will be in the hospital for approximately 5 days after the surgery.  Alex calculated that I’ve lost about 8 lbs since my treatments started.  So she’s making sure my skinny butt eats more fat.  The post-operative chemo will begin again a few weeks after surgery.  This is what my surgeon calls a chemo sandwich.  I originally understood that the ileostomy would be for 6-8 weeks, but now the doctors recommend that I keep it until the chemo is over in six months.  This is so the post-operative chemo will affect any remaining cancer cells as soon as possible.  In colorectal cancer patients there is a high chance of reoccurrence or spreading to other organs like the liver

Done with pre-op chemo and radiation

I apologize for not posting any updates but my “get up and go” got up and went.  I had my last pre-op chemo and radiation treatments two weeks ago.  Since then I have been very low energy.  I spend most of the day resting or napping.  So, I am finished with phase one of my cancer treatments.  Next week I meet with my surgeon to start on phase two.

Fifth and Sixth Weeks

The treatments really started taking their toll on the fifth week. I spent two Sundays in the ER with a fever and I was also admitted to the hospital for a couple of days. Turns out I was a little dehydrated. My doctor’s main concern was that I might be developing Neutropenia. Good news, my white blood cell count was fine and there where no infections. My hospital maybe considered number one in NYC but that does not apply to their food.
http://en.wikipedia.org/wiki/Neutropenia

Fundraisers for Me

My incredible SF Bay area friends are hosting a fundraiser to help me pay for my cancer treatments. My friends who live in NYC don't have to feel left out. They will be invited to an east coast fundraiser, my birthday party, also held on Saturday November 21st.

 You're invited to a West Coast Fundraiser Wine & Cheese Party for Shane!

Week Four - Inflatable donut

Doh! Cancer is now officially a pain in my ass, at least a couple of times a day.  Luckily, there's oxycontin.  Narcotics woo woo!  That inflatable donut at the RX is starting to look better and better.

Week Three Matzo Balls

I start my third week of continuous chemotherapy today. A pump, which I wear, administers the cocktail 5FU via the aforementioned port catheter. It’s attached to me 24/7. My oncologist said the pump would be about the size of a Walkman – more like a portable 8 track cassette player. The pump makes a sound like an industrial air freshener in a restroom. The saucy chemo nurses who laugh at my bad puns swap the cassette of 5FU and insert a new needle in my port every week.

The 5FU will not cause me to lose what little hair I have left. So far I have only felt a little nauseated no long conversations yet on the big white porcelain telephone. Last week the doctor gave me a script for Marisol or oral Mary Jane and told me to eat more donuts. A side effect of the Marisol could be increased desire3 to watch Cheech and Chong movies and laugh hysterically. High caloric foods will help increase my blood pressure. I will have another bowl of matzo ball soup please.

New Plumbing

End of September I obtained some new hardware.  A vascular surgeon installed a titanium port catheter on the left side my chest and neck.  A thin plastic tube was inserted into a blood vessel to provide a painless way of drawing blood or delivering chemotherapy into my bloodstream over a long period.

If you ever want to get a seat on crowed subway in NYC where a huge piece of balled up gauze taped to your neck.  Works like a charm.  Although, I was sore after the surgery (thank you Jesus for Vicodin), I am starting to get used to my new plumbing.

What You Can Do to Help

Here's a way you can help out.  Make us dinner.  We could use a hand or a kind note.  This website has a a calendar with a list of activities or tasks that you can sign up for to help us out.  Thanks.
http://www.lotsahelpinghands.com

Treatment

The recommended treatment is pre-op chemo and radiation therapy, then surgery, followed by more chemo therapy.  Over six weeks I go in for radiation 5 days a week for a total of 28 treatments.  During the same period 5 days a week I receive continuous chemo therapy (5FU).  This simaltaneous treatment method has had good results.  I have a port catheter that a surgeon installed in my chest.  The chemo is administered via the port by a cassette/pump that I wear 24/5.  Freaky no.

Then, I will have surgery to remove the tumor probably around the holidays six to eight weeks after the treatments. I will get a temporary ileostomy (bag) so that my body can heal, and then 8 weeks later they will reverse  the ileostomy.  Two different surgeons have said it is unlikely that I will need a permanent colostomy, but it is a possibility.

They recommended 6 months of post-operative chemotherapy since it looks like the cancer might be in some of my lymph nodes - that's the difference between stage 2 and stage 3.

Diagnosis

No shortage of great physicians and hospitals in this city.  In fact, it feels like half the doctors of NYC will have had a finger in my rec . . . recovery.  According the biopsy and two ultrasounds I have stage 2 or 3 rectal cancer.  The good news is that the cancer doesn't appear to have spread to any other major organs although it may have spread to a couple of lymph nodes.  Both surgeons that I visited recommended the same treatment plan, and they said this type of cancer is common and curable.

Overwinter as a survival strategy

A month ago today I was diagnosed with rectal cancer.  Since then I have spent a lot of time traveling to hospitals, meeting with doctors, reading in waiting rooms, and fretting about health insurance.  Pardon the delayed notice, I have not had the time and nor the energy to contact all of you folks directly. So here goes my blog to keep you informed and to help me stay in touch. 

Why lightning bugs?  In addition to being one of my favorite insects from my childhood summers spent in Ohio, they overwinter as a survival strategy.   Also, their butts light up as if irradiated which, as Alex pointed out, is appropriate.