Between Suitcases and Surgery Prep

There is something oddly fitting about writing from Germany in the middle of the night while waiting for a suitcase that decided not to make the trip with me. My body is still on U.S. time, my luggage is somewhere else entirely, and my mind is doing what it has done all summer: running through the endless logistics of travel, work, medical appointments, and surgery prep.

Medical care coordination continues to be arduous. I cannot even imagine returning home to the United States on August 1 and then turning around for surgery on August 5. I now know I would not have been ready, given how busy this summer has been.

I had a list of tasks to complete before I could be cleared for surgery. To prepare for my hysterectomy in 2015, I only had to show up for the pre-op evaluation. This time, I have four appointments, three of them happening on Friday, September 18. I had to make many calls to coordinate all of those appointments around the eleven days in September I will be away for two back-to-back business trips.

Two additional things came up that I had to handle on top of those four appointments. My internist told me I needed to get my shingles vaccine before surgery, and I confirmed that with my oncologist. I was advised to complete both doses at least two weeks before the surgery. This is a precaution because I have no history of chicken pox or shingles, although I did receive the chicken pox vaccination as an adult. I took my first dose last Monday. What I did not expect was the strong reaction I had to the vaccine. I was feverish and fatigued for a few days. My internist warned me that the second dose could trigger the same reaction, or possibly a worse one. I decided to reschedule the second vaccination so it would be at least one week before I leave for my 11-day work trip in September. I would hate to fly to Europe with a fever.

I have been living with hereditary hemochromatosis since I was diagnosed in 2009. It is a genetic mutation—which is funny, because cancer is a gene mutation as well. I’m full of genetic mutations! That’s probably why I’m so weird! Hemochromatosis affects how iron is metabolized. My body absorbs iron four times faster than a typical person’s. If there is too much iron in the blood, the body naturally stores it in the organs. Excess iron, however, can damage organs. I have been working with a hematologist since 2009. My hemochromatosis was manageable with monthly menstruation until my hysterectomy in 2015. When blood leaves the body, either through menstruation or phlebotomy, iron levels in the organs decrease. Since 2015, I have had several therapeutic phlebotomies, usually 250 ml, or about one cup at an infusion center. I cannot donate blood because they take one pint, or two cups. Usually, the American Red Cross is supposed to turn away people with hemochromatosis because they cannot use iron-rich blood, which does not make sense to me considering how many people with anemia need my blood. The one time that I decided to go to a blood donation center instead, I was just done with cancer, and going to an infusion center felt too soon. It put my body in shock for a week.  I eventually accepted that getting it done safely at the infusion center is my new normal.

At the end of June, labs revealed that my ferritin—how much iron is stored in my organs—was elevated, and it was time for a therapeutic phlebotomy. Since my hematologist is also a medical oncologist, she was familiar with my case and recommended that I get it done last week, two months before the surgery. She said I would likely lose blood during the partial nephrectomy, which would reduce iron stores in my body. That is also why they had to type my blood and plan for a possible transfusion. The procedure was much harder for me to manage this time because of the reactions I was having to the shingles vaccine.

Another interesting thing: I have lived with a grass allergy my whole life. A few years ago, I went through immunotherapy for three years so I would not have to take allergy medications anymore. I cherished that brief period without allergy medications. However, this summer I am having allergic reactions again. My medical team said my body has changed. Cancer emerged. My allergic reactions returned. They are not as bad as they were before, but they are back.

Needless to say, last week was a challenging medical week for me. So, in a strange way, being in Germany for a meeting feels like a pause button. I am still waiting on luggage, still coordinating care from afar, and still carrying all the uncertainty that comes with preparing for surgery. But for the moment, I am also somewhere different, with a little distance from the appointments and phone calls. Maybe that is what this trip is giving me: not escape exactly, but a brief chance to breathe before the next round begins.