Hello everyone,
This is my first post, and I’m not really sure how to start. I will do my best to give a succinct timeline and be as objective as possible even though I’m freaking out inside.
I’m a 37 year old mom of two amazing kids, aged 2 and 4. My mother died when she was 45 with AML, and she fought it for 3 years, spending the majority of that time in the hospital. I’ve been a Hospice social worker and volunteer for 10 years now and I have always known that if I were to become sick, I would opt not to fight the way my mother did. I would rather go out peacefully at home with my husband, kids, family, and friends by my side.
I have been somewhat hypervigilant about my health due to what happened with my mom. She was 37 when she was diagnosed with a thyroid issue, 40 with RA, and 42 with AML. Each year I have blood work done to ensure everything is ok. When my daughter was a few months old my PCP referred me to a hematologist/oncologist because he didn’t like the results of my blood work. The Doctor I saw was horrible and unprofessional, but he was the only one around who took my insurance. After 3 months and 4 rounds of blood work I was told I tested positive for Epstein Bar Virus, and that my fatigue was a result of the virus. He also suggested that I go on birth control (although I had my tubes tied) so that I could stop my monthly periods or have an ablation as to minimize blood loss. 5 failed attempts at finding a good birth control later, I gave up and decided I would just have to deal with the iron loss through Rx vitamins. The oncologist also commented at our last visit that he couldn’t “guarantee” that I wouldn’t have cancer in 5 years?! I requested, but was never made privy to my final lab results.
Fast forward to February of this year. My PCP is again concerned and says a CBC needs to be repeated in 3-4 months time. I agree and come back to have it done again. This time I’m again referred to a hematologist/oncologist but I also have a diagnosis: neutropenia. Of course I start researching everything I can online and I quickly become terrified. I call my doctor and ask if we can rule out any of the autoimmune disorders, since my mom had RA, and I have maternal aunts with Lupus. She agreed, and ordered the ANA test that checks for 150+ autoimmune disorders. One week later, it comes back negative. When I tried to speak to my doctor again about it over the phone, I was told that I have to make an appointment to come in and see her personally before she will discuss anything else with me, or I need to secure a hematologist/oncology appointment.
As I said in my title, I’m meeting with one this week. This is a new doctor who appears to have an excellent reputation. Obviously I’m terrified, so this brings me to the reason for my post. I would like to ask the community at large for feedback on the following:
1) Did you have to have a bone marrow biopsy in order to secure a diagnosis?
2) What should I expect at my first appointment?
3) These are my CBC #’s, what do they signal to you?
Hemoglobin: 11.3
WBC: 2.5
Neutrophils: 1300
Platelets: 145
Additionally, in the last couple of months I have felt almost always exhausted, I get winded at the slightest amount of effort in an activity, I have full body aches, bruise extremely easily, have a cough that’s lasted more than a month, and in the last few days I’ve developed a sore throat (no one else in my family is experiencing these symptoms).
I would appreciate anything and everything anyone might have to say, good, bad, or ugly. Helplessness doesn’t suit me, so this is my way of staying proactive.
Thank you!
Shannon
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