Last week of radiation

Dear Family and Friends,

The last week of radiation treatment begins tomorrow. Five more days and another milestone completed!

Linda colored my hair again on Saturday. I have about a quarter of an inch all over my scalp. I’m considering going to work without a scarf tomorrow. I spent all day Saturday without a baseball cap or a scarf and felt okay. I’ll see how I feel tomorrow. If I can work up the courage to go without a wig, scarf or hat to work this week it will mean I went 10 ½ weeks from the end of my last chemotherapy (quite bald) to having enough hair to comfortably go “public.” Total time from complete hair loss to what I consider “publicly presentable” may be 18 weeks altogether. When I put it into weeks like that I feel that it wasn’t too bad.

I have been able to walk/jog every morning this week except one. I’m up to two miles in 30 minutes. I have a ways to go to get back to my previous endurance level but at least my routine is returning. I am continuing with the use of the website calorie counter and trying to follow a diet heavy on vegetables, moderate on protein and fruit and low on breads and other carbohydrates. Really, the calorie counter is a misnomer – I primarily use it as a food tracker so that I can return to being cognizant of what I’m eating. For the last four months or so, I have just eaten for the sake of trying to rid myself of the ever-present nausea. That, unfortunately, led to a nearly ten pound weight gain which is a lot of weight on my not quite 5’3” frame. I no longer have the nausea however the one chronic complaint that still lingers is the constant fatigue. Food rarely helps (even comfort foods do little to improve my energy).

We’ve initiated a new program at the office (Cancer Care Associates) to enhance our initial pre-chemotherapy teaching visit. The first priority is to meet each patient before the day of their first chemotherapy. There are times when this is not feasible but for the most part, we are able to ensure that it happens. We do this because so many of the patients (including myself) felt totally overwhelmed on the first day of treatment.

Patients expressed concern that they have a hard time understanding and remembering all the post-chemotherapy directions given while sitting in the chemotherapy chair waiting for the first treatment. Nothing like a compassionate nurse trying so hard to make us comfortable so that we can absorb all the new information; and yet the visual we have chair-side is a table overflowing with needles (long ones too!), fluid bags (clear and colored), tape, gauze, blood lab reports and teaching material. It was overwhelming for me and I’ve worked in oncology for 25 years. I can’t imagine how it is for someone who has no oncology or medical experience.

The new program offers not only a chance for patients to learn about their chemotherapy treatment in a quiet office with no distractions but also provides a visit with a financial counselor to review the out-of-pocket expenses each patient might have for treatment as well as any other requirements the patient must adhere to with the insurance carrier. I was halfway through my chemotherapy treatment program before I realized how much my out of pocket expenses would be. Chemotherapy is expensive (mine was approximately $4000 per treatment not including the doctor visits, blood labs, and the unexpected three day hospitalization) and I wanted to know how much it would cost our family. I wasn’t going to refuse treatment because of the cost but I wanted to know so we could plan as much as possible. It is my hope that our patients find this program to be positive and beneficial as they start their own journey.

Anne heads back to Macomb, Illinois this week for her second year as a Graduate Assistant and Assistant Soccer Coach at Western Illinois University. She’s been so helpful this summer and it’s been so much fun having her home. I will miss her terribly. When the kids were young I was well aware that the “days were long but the years speed by quickly.” It wasn’t until the house was quiet (and clean) that I saw just how quickly those precious years really did go by.

My thoughts and prayers are with you.

Love,

Veronica