Holiday missed

One of the downsides of my big surgery is that it had to be done in December. I delayed it a week or two so that I could enjoy Thanksgiving with my family and some early Christmas activities. For the past few years of cancer treatment I have tried to schedule a break for Christmas so that I could enjoy the festivities and time with family.


But I didn't think it would be wise to delay this surgery any longer. And from my surgeon's description the tumor in my rectum was on the verge of becoming life-threatening any day. So I sucked it up and focused on surviving the surgery, sacrificing what is regularly the happiest time of the year for family, friends, and me.

Now that my body is finding it's new normal, the holidays are over and the first full week of January marks a return to sober routines of work and non-festive cold weather. It's all a little more depressing without fresh memories of a fun Christmas break.

At least there is one more holiday to celebrate. Since I was little my family celebrated Epiphany, or Little Christmas, on January 6th with a nice meal and a small gift exchange. I will try to enjoy that again this year in the company of my girlfriend and companions.

Bearded man

I'm out of the hospital after my big surgery. It went well – the surgeon found only the two known tumors to be removed. The one in my rectum had grown to the size of a lemon and was very near complete obstruction, so I'm lucky that I didn't need a half-assed emergency surgery in the weeks leading up to the one we planned.

The rest of my abdomen looked clean, so they took out the tumors, applied heated chemotherapy, and sewed me back together. My rectum was lost to the tumor, so now I have a permanent colostomy. The tumor was also attached to my bladder but fortunately the surgeon was able to separate them and save my urinary tract.

I've been back home for a week, enjoying the peace and privacy that lack during any hospitalization. I skipped shaving in protest, as an energy-saving measure, and out of curiosity for how I'd look with two weeks' growth. My energy and appetite are slowly improving; my brain is still a bowl of mush.

A big day

I'm coming up on one of those days that's common in the life of a cancer patient: a Big Day. On Monday I'll check into Mercy Hospital in Baltimore and on Tuesday Dr. Armando Sardi will attempt to remove my chemotherapy-resistant tumors and fry any stray cancer cells with a heated chemotherapy flush.

He told me to expect an average hospital stay of two weeks for this procedure and three months for full recovery. But I know from my big surgery in 2005 that complications could prolong that by at least a factor of three.

I don't know exactly what shape my body will be in after the surgery. I'll probably have a new colostomy. I might have a urinary ostomy. The previously irradiated section of pelvic bone will be removed if it's still harboring malignancy. The doctor might find that there's too much disease to treat when he opens me up and just leave it be. Or all could go wonderfully well and this could finally clear me of the cancer I've been wrestling with for more than four years.


How do you prepare for a day of such uncertainty? I spent extra time with family at Thanksgiving and celebrated some parts of Christmas early since I won't be able to travel to be with them. I have already finished wrapping presents for my girlfriend and my mother who will be in town with me. For my scientific consulting business I have made arrangements to work from home during recovery and put projects in motion to continue in my absence.

But it's hard to predict just what will happen beyond Monday. It's like driving on a strange road in thick fog. There are other times in life when we all experience such uncertainty: the first day of school, the first day of college, the first day at a new job or the first day in the military. Those are days like this where there's a known unknown, an experience which we'll look back at someday and appreciate what changed at that moment. Another big day.

The face of cancer – 2 years

Two years ago I began taking daily photographs of myself to track how my appearance changes as I battle with cancer. During that time I started a different chemotherapy, treated a bone tumor with radiation, knocked the cancer back into remission, finished chemotherapy, diagnosed a recurrence, started another chemotherapy, and found that these drugs that helped before are no longer stopping the cancer's growth.

I previously posted time-lapse movies of these self portraits at the 6 month and 9 month marks. Now I present two years of self portraits as a high resolution download or as a streaming video.



The early months were marred by the severe acne and hair loss from the previous ineffective chemotherapy. Since then I think my appearance has continued to improve even through the latest months of recurrence and unsuccessful return to other drugs.

The best plan of attack now is a big surgery to go after the tumors directly. So I am preparing myself through eating, exercise, relaxation, and planning for months of recovery. The break from chemotherapy at this time might show in the extra twinkle of energy and clarity I feel.

Avastin hypertension

I am now off of Avastin in preparation for surgery in December. Since Avastin prevents blood vessel growth, it needs to be removed so that the surgical wounds can heal properly.


Another side effect is hypertension. My blood pressure lately is around 155/90 and that's even with 10 mg per day of Norvasc. I haven't noticed any problems with the high blood pressure, but I know that long term it should be lower. I was curious how long it takes to return to normal after stopping Avastin, so I did a little Googling.

There's a good amount of information now about how to identify and manage Avastin-induced hypertension, but I haven't yet found any data about how patients respond after stopping it. Then it occurred to me – Avastin is usually given to patients with late stage cancer, so there's probably not much chance to track patients for years after stopping therapy.

It's just another little reminder that I'm sailing in uncharted waters and heading further from shore every year. Fortunately I deal well with uncertainty so it doesn't bother me emotionally, but as a scientist it's striking to me how difficult it is in medicine to get enough data to make informed decisions.

Resurgence

A year ago I graphed my CEA to show how that tumor marker tracked the growth and remission of my cancer. Now it's time for an update:


At the end of 2008 it looked like my cancer was headed toward oblivion as all of my tests were clear and I was feeling good (aside from the chemotherapy side effects). We continued Xeloda and Avastin for a few more months to be safe. My CEA came back up a bit but held steady within the normal range (below 5.0 ng/mL for a cancer survivor). As the cumulative side effects of Xeloda mounted we stopped that drug and planned to continue with just Avastin to keep any tumor growth in check.

A couple months later I had some pain and fevers that led to scans and a sigmoidoscopy which revealed a new tumor in my rectum and another nearby. So I went back on Xeloda, continued Avastin, and added oxaliplatin, an ingredient in the FOLFOX regimen which was my first round of chemotherapy in 2004-2005. The oxaliplatin made me feel awful, but for three months now my CEA has been rising.

So it appears that Xeloda, Avastin, and oxaliplatin have lost their effectiveness. Later this week I will get new PET/CT scan results and discuss plans with my doctor. The leading candidates to try next are mitomycin C (an older chemotherapy drug) and panitumumab (a newer relative of Erbitux, the drug that made me sick and ugly in 2006 but failed to stop my rising CEA at that time).

Died young

In the past day I learned that two of my friends with cancer died this week. Both were a little younger than me and struck with the disease while still in school.

One of them I met while I was getting treatment for my first recurrence, two years after my own initial diagnosis. She had a very similar medical history and even shared the same surgeon and oncologist. I tried to offer some encouragement and advice as she began her own battle. Unfortunately she had more trouble with the treatment and her cancer was more aggressive.

The other I met earlier this year through a support group for young adults with cancer. He had a rough time with repeated and painful metastases, but kept fighting, organized the support group, and enrolled in graduate school.


They say that people with cancer are living longer and that cancer is becoming a manageable long-term disease like diabetes. But with the recent loss of these two friends and the high profile loss of Tony Snow and Randy Pausch, it's apparent that cancer is still efficient at dishing out tragedy.