Coming Back and Getting Real

I wrote this email to family and friends on August 2 after our return from our unplanned month-long stay in Los Angeles. That was the beginning of yet another part of this cancer fighting journey, the part that involves coming home to face the unpleasant realities of living with cancer.

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Dear Family and Friends,

Now seems like a good time for another update.

We returned to New York earlier this week. The weeks recovering in LA spent with family and friends (some of whom I hadn’t seen in years) were wonderful and healing, filled with some tears but mostly love and good food (which in my family are one and the same). I left LA feeling incredibly blessed — I know, strange to say when one has advanced colon cancer — but I really do feel blessed. Most people don’t get to feel the kind of love and compassion that I have been shown and which I would have never experienced but for this cancer. So thank you to each and every one of you who has called or sent a text, email or gift and for the innumerable other acts of kindness and support.

Coming back to New York was rough — in part because we took the red-eye which meant no sleep on the plane but mostly because everywhere we turned in our home, we were struck by memories of life before the cancer diagnosis. That life is gone and we must adjust to a new life that for now seems entirely defined by cancer. It’s a hard pill to swallow.

But after one day of feeling not so great, I made it to the gym. Exactly three weeks after the surgery, I was running again on the treadmill for 20 minutes. And the most amazing thing happened while I ran — I grew angry at the cancer. I started yelling at the cancer cells. “How dare you betray my body! How dare you threaten to take me away from my husband, babies and all who love and need me! I will seek you out and I will destroy you!” I shrank to the size of the cancer cells and I began strangling them with my bare hands, reaching into their very DNA. Then I envisioned the chemo empowering me with a sword, with which I slashed them to a billion pieces and then a gun. But truthfully, nothing was as satisfying as crushing them with my bare hands. Next time, I’ll visualize the chemo making me bigger and more muscular.

Today we met with the oncologist. We really like him. Chemo will start on Monday, August 12, right after we return from the Outer Banks. It is important that the chemo start as soon as possible 4 weeks post surgery. There is reason to believe that the sooner the chemo starts the more effective it will be. I will be on a regimen called FolFox, which consists of 3 drugs, one of which — Oxaliplatin — is very powerful. Common side effects: neuropathy (numbness and tingling including extreme sensitivity to cold in the hands and feet), nausea, diarrhea, fatigue, weakened immune system, mouth sores, hair loss. Yes HAIR LOSS. I was told previously that there would be no hair loss, and now I’m being told otherwise. UGH!! So I will be shopping for a wig. Any recommendations for a wig shop?

It’s the uncommon side effects (of which there are many) though that I am truly terrified of, so I really really need to stop reading on the internet. I will go in every 2 weeks. Oxaliplatin will be infused into me through a port (that will be implanted into my upper chest) during a 2-hour period. I will then go home with a pump through which the other 2 drugs will be infused into my body during the following 2-day period. The doctor says that I should have someone take me home after each treatment — so I’ll be taking volunteers (thanks to those who have already volunteered).

The doctor also highly recommends switching to a plant-based diet and banning refined sugars. He says there isn’t any good science to support the proposition that such a diet will reduce the risk of cancer or recurrence, but I figure it can’t hurt. We were already headed towards a less meat diet and given my history with gestational diabetes, I was already sensitive to limiting sugar and other carb intake. So does anyone have any recommendations for good vegetarian or vegan cook books or cooking blogs? How about recommendations for vegan or vegetarian restaurants that deliver in the neighborhood or in Manhattan (from which Josh could pick up food)?

The most important thing the doctor told us though is that there is every reason to be hopeful. My age, physical shape, the fact that all visible signs of cancer have been surgically removed and the advances in chemo are all factors working in my favor. To believe, to have faith in the face of self-doubt and uncertainty, is definitely the most difficult part of dealing with cancer. So I am glad that I am surrounded by doctors and friends and family who believe and have that faith when mine wavers.

Many of you have offered to help in any way you can. I’m still trying to figure out the practicalities of the situation. I have to admit for someone who is usually so good at dealing with practicalities, I am feeling rather disorganized and overwhelmed right now so I haven’t figured out how to deal with the day to day needs of taking care of myself, my husband and my children. My needs will in large part depend on the side effects from the chemo, something I won’t know until it starts or even several cycles into the chemo because of the cumulative effects. Feeding my children, my husband and myself seems to be at the top of that list. For those of you who know me well, you know I’m kind of crazy about cooking and feeding my children in an effort to instill good eating habits and rid them of their pickiness. I’m afraid I will need to let go of some of that craziness right now. I intend to start a planner on caringbridge.org, which will allow me to publicize my needs (whether it be a meal, childcare, running errands, taking me home from chemo, or whatever else) and those of you who want or are able can sign up (ABSOLUTELY NO PRESSURE!). So I’ll get that going when I get more organized.

Thanks for reading this exceedingly long update. Keep the prayers and thoughts coming. Love to each and every one of you.

Julie