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.