Living with Uncertainty

Not long ago, I was reading “Dealing with fear of cancer recurrence,” a blog post by Susan Krigel, PhD. In her post, she mentions that low-to-moderate fear of recurrence is not only realistic, but also potentially helpful. A cancer survivor with low-level fear, for example, can be motivated to follow doctor’s recommendations. Some survivors, however, have such high levels of fear that they can’t really live their lives because of extreme anxiety.

Dr. Krigel includes recommendations to manage fear of recurrence so that the fear is productive rather than destructive. Her advice is helpful, and I try to follow it every day. Sometimes I feel a bit down, though, and the most difficult recommendation for me is #8, “learn to live with uncertainty.” This is ironic for me, since I’ve always thought of myself as adaptable.

I’ve never been a person with a five-year plan. When I travel, I have my plane ticket and a basic plan of places and things I most want to see, but I don’t have a set itinerary. And I often like surprises. I used to embrace change. But my cancer diagnosis and treatment not only changed my life but changed me. A little certainty about my future health might be nice, but apparently isn’t part of my journey. Forget about a five-year plan; I’m not even sure about a one-year plan! I can be sure of today, though, and that is how I try to live my life as a cancer survivor. One day at a time, doing activities I enjoy, spending time with loved ones, and refusing to allow uncertainty to grow into self-destructive fear.

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Baking for a Reason

I, along with millions around the world, watch and savor The Great British Baking Show when it is on TV.  The judges, Mary Berry and Paul Hollywood, often offer sage tips to improve one’s baking; the hosts, Mel Giedroyc and Sue Perkins, provide quips and consolations to the bakers in equal measure; and the contestants spur my imagination with their creative flavor combinations and plans for their showstoppers. Each week, one baker has to leave the tent, no longer in the running. Recently, Val Stones had to leave the tent. She was one of my favorites, not for her bakes but for her sunny personality. In her farewell, she said, “When you bake, you always bake for a reason. You’re giving it to people, so you make it the best you can, and you make it with love. And whenever I make anything, I stir love into it. So when I present it, it’s special.” Over the years I’ve thought and said much the same thing, only not quite as eloquently. The bottom line is that I bake for people I care about.

And after all that I’ve experienced over the last  two years, I still put love into my baking. But the love is not only for others but for myself as well. When I bake, I have to focus. Leaving out an ingredient or measuring out too much or too little of something could result in a baking flop. Concentrating on my measuring, stirring and kneading frees my mind from worry about that twinge I felt in my side today. Before my cancer diagnosis, I was not a hypochondriac. Far from it. But in the course of my cancer treatments, I’ve become hyper-vigilant about every little twitch. Slowly, I’m working my way to a more balanced way of being. I want to take care of myself and my health, of course, but I don’t want concern for my health to occupy my mind 24/7. Baking allows me to think of something else, have fun, and express my creativity. Baking is truly about giving, to others and to oneself.

A Reflection on Beatriz at Dinner

A week ago I saw Beatriz at Dinner. In this film, Salma Hayek plays Beatriz, a Mexican-American massage therapist and healer based in the Los Angeles area. Beatriz goes to a wealthy client’s house to give her a massage, and stays to dinner when her car won’t start. What ensues is a stark contrast between the haves and the have-nots, the takers and the givers of the world. I won’t go into the issues raised in the film. Instead, I’ll focus on a situation mentioned in the film that I noticed, but others might not.

Beatriz knows this wealthy woman (Cathy, played by Connie Britton) because she first worked with Cathy’s daughter. As Cathy explains to her friends, her daughter had chemo, radiation, and surgery, but wasn’t  doing well. So she and her husband enrolled their daughter in this alternative medical clinic, and their daughter was placed on a regimen including massage, special diet, and other alternative therapies. Under this treatment, Cathy says her daughter thrived and recovered.

This treatment center is where Beatriz first met Cathy and worked with Cathy’s daughter. The clinic, which looks more like a rustic resort, is a tranquil place. All the patients are white and probably prosperous.  I’m sure the therapies offered there are the absolute best but, unfortunately, such alternative treatments can be out of financial reach for many. Insurance companies are now approving complementary and alternative medicine (CAM) more than they once did, but it can still be a struggle. Fighting cancer takes all one’s energy; filing appeals or looking for grants and other funding is a drain of that precious energy. In my case, I was worried that my insurance company would deny coverage for my participation in a clinical trial for Keytruda, if I needed to join the clinical trial. Luckily, my insurance company approved coverage, although I haven’t needed it as yet. But I and Cathy’s daughter are some of the fortunate ones. What of those who are poor and/or uninsured/under-insured? The inequity of medical treatment in the U.S. is truly sobering and frightening.

An Epiphany

I’m an allergy-prone person. This can sometimes exacerbate my reactions to cancer treatments or masquerade as a reaction to cancer treatments when it is actually a reaction to something else. In April 2016 when I began Adriamycin and Neulasta injections, I noticed I had trouble breathing. Not anaphylaxis, but not comfortable either. I didn’t know if it was the Adriamycin, the Neulasta, or both that was causing this reaction. Thankfully, I only had three rounds, but my breathing problems, although not nearly as pronounced, continued for several months after the treatments stopped. My oncologist checked me out, but everything looked good. However, even as late as two weeks ago, I still had a bit of difficulty breathing, always at night.

But as I was waiting to see my oncologist two weeks ago, I thought about my breathing problem and finally put two and two together. I’ve always had a reaction to potatoes treated with sulfites. If I eat french fries made with potatoes treated with sulfites, I feel a lump in my throat. However, wines with sulfites never used to bother me. However, I believe that with my cancer treatments I now react adversely to wines with sulfites.

As a result of my radiation treatments, I have to use a vaginal dilator to prevent scarring and obstruction. My oncologist recommended that I take a couple sips of wine before using the dilator to relax me and make this task easier, which I had been doing for months.  After I had this epiphany I discussed my idea with my oncologist and told her I was going to replace the wine with a sulfite-free alcohol. She approved this and since I’ve switched beverages, I haven’t had any more breathing problems.

Some Helpful Information

I started this blog primarily to help others with what I’ve found useful. Going through cancer treatment can be overwhelming at times, so any resource that can make the journey less stressful is most valuable. Here are a couple of resources that really helped me.

  • Sharing your story and concerns with others. I’m fortunate to have a friend who had lymphoma five years ago. He calls me every week, and sharing my fears and questions with him has gotten me through some very tough times. Family and friends are so important. Don’t isolate yourself. Also, Gilda’s Clubs and Cancer Support Communities (links to both found in my Blogroll) have support groups for those with cancer and for family members. There are also social workers and counselors on staff, and the services are free.
  • Information provided by The Cancer Research Institute (CRI). CRI has a website, Facebook page, and YouTube channel. A link to the website is in my Blogroll. The institute website has articles and other resources, all free of charge. CRI also had a conference in New York City several months ago that was streamed. Again, enrollment was free. There were oncologist panels with discussions about the latest breakthroughs in cancer research, advice on how to become part of a clinical trial, tips for finding financial help, and cancer survivors sharing their stories.

Dietary needs and habits often change when undergoing cancer treatments. Before I began chemo and radiation treatments, I didn’t drink very much water. That changed in a big way once I began chemo. I, like many other cancer patients, found that drinking water throughout the day combats nausea. Now I drink lots of water daily without even thinking about it. Something else I needed, especially when undergoing radiation, was red meat. Unless I ate some red meat, especially roast beef, I was constipated. Chicken and fish just didn’t relieve my discomfort. But even small portions of red meat helped my regularity.

When I think of when I first heard I had cancer and the journey that has brought me to where I am today, I remember that first time in my oncologist’s waiting room. I was dazed and alone.  A woman in the next seat began talking to me. She shared that she was a breast cancer survivor of three years, and was seeing her oncologist for a yearly checkup. Then she said, “I look at all these people and want to tell them it will all get better.” Sometimes it has been hard to keep that in sight, but I’ve made it through. Don’t forget. It WILL get better, especially when you reach out to others for help.

 

A Glimmer of Light

Last Wednesday, I had my second CT scan since my surgery June 29, 2016. In that surgery, my oncologist removed the tumor (along with some of my intestine) that had wrapped itself around my lower intestine. With the removal of that tumor, I was now “cancer-free.” This tumor developed after chemo, radiation, and a total hysterectomy performed in December 2015. I first heard the sobering news of this tumor in March 2016.

In response to the tumor in my lower intestine I was put on adriamycin, since the chemo that had been effective on my tumors pre-hysterectomy was not effective on this one tumor post-hysterectomy. But the adriamycin wasn’t effective either, so that is why I had surgery last June. My treatment plan was then changed to a CT scan and appointment with my oncologist every three months. If the CT scan revealed a tumor, I was approved for an immunotherapy trial with Keytruda.

Since my last scan didn’t show any tumors, I now only have to get a CT scan every six months, though I still have to see my oncologist in three months (September). And, of course, if I experience any symptoms I’m to contact my oncologist immediately.

It’s been over two years since my initial cancer diagnosis, and I’m just now starting to feel more like myself, able to go out with friends and fully participate. Before my cancer diagnosis, I wasn’t a hypochondriac at all. However, during my treatment and for some time afterwards I became hyper aware of any little pain or twinge. Slowly, this extreme body-awareness is subsiding. It’s a process.

 

 

 

 

 

 

The Big Picture

When I first got my cancer diagnosis in spring 2015, I naively and optimistically thought that my treatment would last a year or perhaps a bit more. But now almost 21 months later I realize that I will at the very least have follow-up tests for the rest of my life.