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.

Symptoms of rectal tumor

Caution: This post deals with graphic details of colon cancer. It's probably of more interest to those experiencing such symptoms than to someone here to learn about cancer in general.

In the 2.5 months since restarting chemotherapy for my colon cancer recurrence I have noticed some new symptoms. Actually, they started a few weeks before the diagnosis and are part of what prompted the tests that found two new tumors, one inside my rectum and one in the adjacent soft tissue.

I often have a feeling of fullness in my rectum like I'm ready for a big bowel movement, but when I go to the bathroom I pass only a little bit of stool. Or sometimes I don't pass any stool but just a couple teaspoons of tan mucus. Whatever I pass removes the urge, but it doesn't seem like enough to produce such an urge in the first place.


Now that we know there's a 1-inch tumor in there, I think that it's crowding my rectum and leaving me 75% full all the time. Then when a little bit of stool comes along I feel like I have a lot. That happens 6 to 12 times a day, and I usually wake up 2 to 4 times each night to relieve myself.

Another problem is that it's gotten harder to pass gas. I used to be able to feel gas enter my rectum and then pass it through my anus, usually without a fart sound. But now it seems to collect further upstream, and when I push it escapes loudly. Or it stays trapped until I pass the little bit of stool blocking the exit. Sometimes after a bowel movement I think I'm done, but when I stand up things shift around and I realize I have a bunch of gas to pass.

The sensation of fullness has also made it hard to determine when I have just an exaggerated feeling and when I really do have a big urgent bowel movement. That's led to some close calls when I wasn't prepared to deposit the unexpected proceeds.

All of these new symptoms make me uncomfortable at times. Most of the day I'm okay and if I'm busy then I'm less aware of the sensations. But it's more difficult to be in a close social situation or away from easy access to a bathroom. I get some relief when I take the pain-killer oxycodone which diminishes the rectal discomfort and slows intestinal motion for a few hours.

It's kind of scary to have symptoms that seem to arise from the cancer rather than the treatment. I'm used to dealing with nausea, fatigue, hair loss, and chemotherapy-induced bowel irregularities. But having new problems due to the cancer which might continue to worsen unless we find a way to shrink the tumors is scary.

You won't give up

A few days after my recurrence was diagnosed, I woke up one morning to a voice saying: "You won't give up. You've been through so much already."

My first impression was that it was my mom talking to me – nevermind that she was in Europe at the time and I hadn't yet told my family about the return of cancer. But it wasn't exactly her voice and I had a sense that it was someone else speaking, and not necessarily somebody that I knew very well.

Of course being the moment between sleep and wakefulness I can attribute the message to a dream. And I'm not very spiritual so it's hard for me to say that it could be supernatural. But it's also hard for me to believe that that particular message came from my own mind.

In particular, the message wasn't "Don't give up" or "You'll be fine". It was "You won't give up", which is something I wasn't very confident about. It's taken a tremendous amount of effort to get through four years of treatment, and I'm not as young, naive, and cheerful as I was at the beginning. I have been hopeful, but this recurrence and return to treatment has come sooner and harder than I was ready for.

So I'm not sure that everything is going to be fine. And I'm not confident that I have a plan ready to get through another round of chemotherapy and radiation. But it is somehow reassuring (as well as exhausting) to be told that I still have a fight left in me.

Second recurrence

In April my oncologist let me stop chemotherapy with Xeloda. My scans and CEA had been normal for six months and we hoped that I could remain disease-free without continued treatment.

It felt nice to be off of chemo, finally able to spend more time at work and play without the old two-week chemo ickiness cycle. I was still pretty tired and had lingering side effects, but I expected those problems to improve over the coming year.

One day in June I noticed a new pain or fullness in my rectum – nothing too surprising with all the surgery, chemotherapy, and radiation that it had been through. A few days later I developed a 101 degree fever that came and went for the next ten days. My oncologist prescribed an antibiotic and sent me for my three-month PET/CT scan as well as a sigmoidoscopy.

The sigmoidoscopy came first. My colorectal surgeon, the one who diagnosed my colon cancer in 2004 (to his own great surprise), said he saw another tumor like before. It was growing from the site where my colon and rectum were reattached, about an inch wide and beginning to interfere with the passage of stool. He also saw evidence that there was something outside the colon pressing inward.


Two days later I had the PET/CT scans. They showed a one-inch tumor at the reattachment site and a two-inch tumor in the adjacent soft tissue.

This news is very disappointing. Just as I was recovering from eighteen months of chemotherapy plus radiation and making plans for the future, it's all spoiled and I'm thrown back into treatment.

We are now trying oxaliplatin, a drug that was given as part of my first chemotherapy but which my body hasn't seen in three years. We're also throwing in Xeloda and Avastin again for good measure. My radiation oncologist wants to irradiate the tumors to prevent bleeding and protect my leg nerves from intrusion into my tail bone. We'll start five weeks of daily radiation in late August.

Aside from the nausea of my first dose of oxaliplatin I'm feeling pretty good. Energetic, clear headed, strong, and mostly pain-free. But I'm unhappy to be returning to the drag of chemotherapy, especially one harsher than before. And I'm worried that with no new miracle drugs these tumors will become resistant and my health will be all downhill from here.

Writing about cancer

I haven't published anything here in a while. At first that was because I had just finished with Xeloda and wanted to focus on non-cancer things for a while.

Later I did write some partial posts but never finished them. I felt that they sounded too optimistic, too preachy, or too pathetic, so I wasn't comfortable sharing them.

Then in June I felt sick for a couple weeks and got busy with tests to figure out what's wrong. I have some news to share from those in a few days, after I know more about what's going to happen.

In the meantime, I was pointed to a blog called My Cancer. It's by Leroy Sievers, a journalist dealing with advanced colon cancer. It's frightening for me to read his recent posts as he's suffering from the effects of widespread metastases that are likely to be in my future.

But it's an interesting, voluminous, and insightful blog. He even has a post on this same topic called Put On a Happy Face?.

Professor of Colorectal Cancer

I stumbled across an excellent colon cancer blog by Heinz-Josef Lenz, a scientific director and professor at USC/Norris. He writes about a variety of topics:

• Diagnosis (and commonly misdiagnosis in young people)
• Available therapies
• Clinical trials
• Cancer research
• Common symptoms
• Health insurance
• Issues for family and caretakers

There's lots of advice that I wish I had sooner and information that might be useful in the future.

Passing

Life doesn't stop for cancer. When you or a loved one is diagnosed it seems like your world and all your plans are upended. But the world doesn't stop.

Housework still needs doing. Bills still need paying. Icy weather still causes car accidents. Hurricanes strike. Votes are counted. Relationships grow, strain, and regenerate. Nephews are born. And loved ones die.

My cat Alexander passed away yesterday. He was mine since high school, eighteen years ago. His favorite job was playing guard, over the garden or outside the shower. He is missed already.


The continuation of life after diagnosis can feel good and bad. There's comfort in normalcy and moments of joy even in dark days. But time keeps marching and won't give you a break from changing, aging, yearning, growing, grieving.

Chemotion

Last week I took a week off from chemotherapy to celebrate Easter and regain strength for the last few weeks of chemotherapy. I noticed that I've been feeling more emotional lately, about the experience of cancer, toward personal relationships, and even in response to television shows and news stories.

Other cancer survivors have warned me that the period after treatment can be harder emotionally than treatment itself. The common belief, I think, is that one has to act strong and determined to tolerate the stress of treatment. After treatment, patients let their guard down and all the repressed feelings resurface. My increased emotion could be anticipation of finishing treatment and greater openness from discussing the experiences in support groups.

But this week as another dose of chemo builds in my system I feel the emotional numbness and detachment returning. I think now that it may in fact be another aspect of chemobrain. Just as memory, concentration, and agility are gummed up by therapeutic poisons, maybe emotion is too.

I have been looking forward to regaining my full intellectual abilities after two long years of chemotherapy. It will be interesting to see how my emotional state could change with recovery too.

Clean

My latest PET/CT scan and blood CEA were excellent. Everything is normal; no evidence of disease.

My doctor is considering three more months of chemotherapy just to be aggressive. But chemo also carries risk of further damage to my organs and more lost time from leading a normal life. The problem we have is that there is no medical evidence to say what to do in my situation.

Few stage IV cancer patients survive as long as I have. Of all the ways that people get colon cancer, mine is in the fraction of those that are hereditary, in the sub-fraction that's nonpolyposis, in the sub-sub-fraction that's not caused by one of the known genes for hereditary nonpolyposis. There's not much medical research available on such a rarity, just educated guesswork. The Xeloda + Avastin therapy that has worked so well for me was expected to just slow or shrink the tumors temporarily, not eliminate them completely.

I am hoping to finish chemotherapy by my 35th birthday in May. In the past four years, that is the one month that has always brought improvement and a break from treatment.

But I'm not as excited I might be expected to be right now. I'm very happy to stop chemotherapy and get back to some normalcy. But I'm still afraid that something bad will happen before I get there. Or maybe as soon as I go off chemo some hidden cancer cells will come zooming back.

I've been in remission once before, so I know better than to expect that I'm cured. I just hope for a long break from cancer and time for medical science to catch up. Maybe some months or years down the road I'll feel ready to celebrate, for now I'm just happy to get some time as my normal self.

Hippo

This is Hippo. He came into my life a year ago, a gift from my girlfriend, Kiki. When I don't feel up to writing about the weighty matters in this blog, I help chronicle his adventures and discoveries at a site we call Hippograms.

It feels silly to admit but Hippo has been a helpful little guy. When I'm home alone due to treatment and unemployment he's always there looking happy. He's never scared, except of things like pythons and crocodiles. He's been a good outlet for happy thoughts and youthful innocence.

He's also been helpful in my relationship with Kiki. He has become our travel companion and frequent excuse for photographs when neither of us humans wants to be photographed ourselves. He even wrote a book about all our adventures (with a little help from Kiki). He's been a catalyst for creative collaboration and a neutral arbitrator when his humans get a little frazzled.

Everybody should have a Hippo.

On the cusp

My cancer treatment is nearing a milestone. In November I had PET, CT, and bone scans that were complicated but mostly clear. My CEA also reached normal levels. With clear tests and no symptoms my doctor declared the cancer to be in remission. Our plan was to continue chemotherapy and then scan again in a few months to see if any suspicious activity arose. If not we planned to finish chemo and hope for good health.

That next set of scans will be in two weeks. My CEA has bounced around a little between 1 and 3 ng/mL but is still in the normal range. I went in for an infusion of Avastin today and started another week of Xeloda. There's a chance that this is my last dose of chemotherapy and I can go treatment-free for months or years. A welcome and long prayed for life change.

Or the blips in my CEA could be regrowing cancer and the scans could show that the questionable spots in my liver from last time are in fact new tumors. That would probably mean that my current treatment has stopped working and it's time to consider something else. A darker change that could make the past year of chemo seem pleasant.

My career is also on a cusp. I am now unemployed again since the grant that paid for my part-time work ran out. My boss is seeking funds for another year, but that depends on budget decisions which are out of our control. I expect a decision any day and it could mean returning to work in my research field, especially if I get off chemo and have a return to normalcy. Or it could be time to seek fresh work.

I'd like to stay in science since it's something that I enjoy, am good at, and am highly trained for. But it's been discouraging to make so little progress while I've been ill, during the very postdoctoral years when a young scientist should be rapidly growing and flourishing. I see other researchers accomplishing work on the ideas I had three years ago but haven't had the time and health to do myself. Maybe science just isn't compatible with unstable health and I should move to a field where results come quicker and without such deep investment.