Our journey with cancer is always an interesting one! We were visiting a doctor two weeks ago to help with some post surgery issues on my skin. When we mentioned that some of the skin near the surgery location in my heel was similar to what we had seen prior to discovering cancer in that location, he almost ran from the room. Deb and I almost laughed at his patient care style but understood as it is such a unique cancer (1% of 1%, da da da) and he was young and not an oncologist. He did recommend that we visit our surgeon at the U of Michigan Cancer Center and so we called and moved up our scheduled visit a couple of weeks.
US Air Force C-17 on the go! Last aircraft “Col K” flew.On Wednesday we saw the surgeon who saved my leg a year ago with the intent to discuss our concerns. In this big “sarcoma center” (did you know they have such things?) we are frequently seen by other medical professionals before we see the doctor. I am still in the learning mode (always inquisitive) and this appointment started with a discussion with a physicians assistant who very firmly told us we needed to be seen there and only could do our MRIs at a sarcoma center. We had dared to suggest to her that we might do follow ups closer to home in Grand Rapids which has a wonderful cancer center too. Once again, we were slightly taken aback by the “bedside manner”.
Before the physician walked in, we had a few quiet, alone moments to talk which allowed us to get our focus back. The doctor was wonderful. After a short discussion, she ordered up new MRIs for both locations where the cancer had been removed. Then I did something that I had wanted to do and kept forgetting. Maybe it was the stress, the pain meds, the short and hurried visits with a very busy doctor but I had not said, “thank you” to her for saving my leg. When I did, I could tell she was touched by my heart felt appreciation as she gripped my hand. Maybe we need to say thank you more frequently to our health professionals? It was a moment I will always remember as I took in her response.
Typical MRI machine
The doctor had said to get the MRIs done within a week. As we approached the scheduler, I could tell it was turning out to be a long day for her too. But I smiled and said I hope this is ok but we need to get two MRIs done within a week and the Labor Day weekend was in the middle. I could tell it was not going to be easy. Then I threw out that we had driven more than 2 hours to get there and she immediately said she would try to help. It took 20 minutes for her to work it but I was headed to The Big Metal Tube again. In fact, it was that evening, a long day but convenient.
The MRI team was friendly, helpful and concerned. They asked me why I was there, if I had pain (that was a yes) and how could they make me more comfortable while I lay absolutely still for two hours. With all the previous experience I knew I would need a blanket for the first hour, good earplugs and a small pillow under my bad knee (old Air Force injury). While the technician inserted dye in my arm late in the process he mentioned they had specific radiologist for different MRIs. Wow! A specialist with special skills had to review all the different types of requirements when I thought they were read by a lone doctor locked in the back room looking at x-rays as some sort of punishment. I make light of it but with appreciation as a radiologist at our small, local hospital identified my cancer on my first MRI 15 months ago.
We care about our military families!Deb, my very patient wife had spent more than 10 hours on the road, waiting to see a doctor, providing input during the appointment, waiting, waiting, waiting … I was out and ready to go – not so fast, you need some dinner she said. With the cafeteria run done, we headed home for a late arrival. I was exhausted the next day and a bit anxious from the events and waiting! Yep, “call in two days” if you have not heard from us is truly an eternity for the patient and loved ones.
I have found some helpful information on the web but research for a rare cancer can be kind of difficult. I think the best information to be found is at the major medical centers (U of Michigan, Mayo, and Cleveland Clinic as examples) and organizations such as this Sarcoma Help organization, “Liddy Shriver Sarcoma Initiative”. Also, this Treatment Guidlelines for Patients with Soft Tissue Sarcoma is very helpful! They did point out some early mistakes we made as patients during two different types of cancer but things we did well as well.
We are blessed with the best medical system in the world! Thank you to all the providers, doctors, nurses and those that make it all work!
UPDATE! 09/02/1600 or 4 PM EDT MilAve_Deborah spoke with U of M Cancer Center and MRI’s were clear of cancer! So we continue in remission! I think this one of the few times when a “negative report is a positive report”? I can feel the breathe of relief leaving the lungs. Time to celebrate.
PS: The MRI equipment is actually not metal since it uses a huge magnet to image the area it is pointed at for doctors to review. No metal is allowed in the area while doing an MRI including rings, etc.
Photo Credits: C-17 US Air Force Photo
MRI Equipment Stock Photo at http://fantasystock.deviantart.com/art/MRI-Diagnostic-Machine-1-48771712