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.

Friendships

One of the depressing results of cancer is its impact on friendships. When I was first diagnosed I gave the news to some of my closer friends. Many responded supportively, and some who I knew only moderately well became closer and more supportive upon hearing the news.

But others who I thought I had been close with did not respond at all. For a while I thought that it was a case of finding out who your true friends are in a time of crisis. But then in a cancer support group I learned that there is another common explanation. Sometimes people don't know how to react to a person with cancer. They might think that you want to be left alone, or they're not comfortable dealing with illness or intimacy. Especially in a young group of peers many will not have experienced a friend fighting cancer before.

Cancer has also interfered with forming new friendships. After three years I realize that the vast majority of those close to me are people I met before diagnosis. There are many people who I knew casually before and have gotten to know better since, but there are very few who I have met and developed as friends entirely after diagnosis.

I think one reason is that I appear as a different person while I deal with the disease. Chemotherapy, surgery, radiation, and the cancer itself all detract from my well-being and the quality of my personality. There are good days and bad days, most days now I am less capable than most days before I got sick. I can't be as active as I want nor as strong, cheerful, talkative, adventurous, intelligent, or productive.

People who knew me before see me as temporarily handicapped and treat me with patience and compassion. Their impression of me was based on my former personality, and if they've known me long enough then three years of illness hasn't brought down my average too much.

But those who've met me recently see a person who is weaker, slower-witted, constrained by unpleasant bodily maladies like nausea, diarrhea, and fatigue. I'm not around as much for work or education. I don't go to scientific conferences or social gatherings as much as I'd like. I have fewer opportunities to meet new people and to get acquainted with those I do.

Actually I think I've done remarkably well during my illness and I'm grateful for feeling as good as I do. And in many ways what hasn't killed really has made me stronger, wiser, and more compassionate. Yet it's still regrettable to think of how much more I could be doing with good health.