I am a 54-year old teacher, who has a plethora of medical issues including being immunocompromised (common variable immune deficiency, which means I am missing part of my immune system). I was diagnosed last August (was 53 at the time). My journey started in May when I had a mass in my belly that hurt like hell. I went to the ER, and they thought it was a hernia (to be operated on immediately). After a CT scan, no hernia, and so they thought I had a large hematoma caused by nicking a blood vessel when giving myself a subcutaneous medicine. They gave me instructions to help it shrink, but instead it grew. I called the surgeon involved, and he decided a biopsy was necessary.
I was at home with my husband when the doctor called with the news – I had Hodgkin’s lymphoma. I cried, and my husband held me. I did not have the usual “why me?” moments because I have been dealing with multiple medical issues for over ten years. “Why me?” is no longer in my thought process. I was crying over the loss of my job, the loss of my ability to do what I wanted as I went through any treatments, and the inability of my body to react well to any new medical issue. I knew that whatever happened my “normal” would be worse than others. I don’t have a lot of energy to do stuff around my house so I have found things I can do while sitting.
I have had six cycles of chemotherapy, and the tumor is still there. During treatments, I give in to the Benadryl and take a nap. I bring my tablet to listen to music, a book, a drawing pad, and some sort of craft. I am currently working on a latch hook rug for my youngest granddaughter. I will be getting surgery to get a larger biopsy to figure out if the tumor is “dead” or a more aggressive form of Hodgkin’s. For me, the biggest move I made was to change immunologists. My oncologist told me that getting my CVID meds through IV would help decrease the chemotherapy effects. My immunologist told me NO that she would not change it over. So, I had incredible nausea, which for me has an extra problem. I have secondary adrenal insufficiency, which means if I vomit or pass out it is an automatic call to 911 and a trip to the ER. Getting that under control is essential in my world. My new immunologist worked with my oncologist to get my medication switched. It made the world of difference. I still have Ativan, Compazine, and Zofran in my house just in case. DO NOT ever be afraid to advocate for yourself and change doctors if necessary.
Don’t kid yourself – you will have bad days. The idea is to have three times more good days mentally than bad days. I have an incredible family support system – not just immediate but aunts, uncles, cousins, and friends who are now family. Find the person you can vent to on the bad days. For myself, I am naturally an optimist and very positive. With all I have been through in the last ten years, this is simply another medical hurdle in my world. Find strength in those around you. For some people it is not the family you were born into but the family you have created over the years. I feel lucky that I have both.