It's April 4th, and Bryan and I are attempting to celebrate our anniversary. I am incredibly irritated at little things and chalking it up to PMS. I try my best to shrug it off, but it just won't go away. I have that dull cramping pain in the lower left side of my abdomen again. "I must be ovulating from my left ovary again", I think. I have been feeling this pain in the same spot every month for the past several months, always within days of starting my menses. It hurts A LOT to be intimate, and I cry (everything was making me cry). The next day I have dull pain whenever I use the restroom. The day after that I have constant, dull pain. The day after that I start feeling significant pain in the afternoon that won't go away. The morning after that I am sitting in a gynecologist's office, waiting to discuss my problem with the doctor. She examines me and finds nothing, but sends me to the outpatient center across the road to get a pelvic sonogram. The sonogram shows evidence of a rupture ovarian cyst. The doctor suggests birth control and I refuse it. I ask for a full blood test, and she schedules me to get it done in July. I go home and research causes and alternative treatments. By my birthday (April 11th) I am considering several different options and making some diet changes.
A few weeks later I decide that I don't want to wait until July, so I schedule an appointment with an endocrinologist in my area. I go in and talk about my symptoms, and she tells me she is sure I have PCOS (poly-cystic ovarian syndrome). My mother has it, and the likelihood that it passes on is 50%, so I consider her assumption to be reasonable. However, bloodwork done the next day shows that no hormone levels are abnormally high or low, and that rules out PCOS and other hormon-related problems. I notice that my red blood count, hemoglobin, and hematocrit are all high. Before I can call the endocrinologist, she has her lab on the phone with me telling me I need to come in and discuss my results with her. The lab mentions bone-marrow mutation and I try not to panic. I schedule an appointment, and then I end up missing it because the battery in my car died the day of the appointment. I reschedule and end up having to take both the kids with me to discuss the results. She comes into the office and tells me that she wants me to see my GP (general practitioner) to discuss the next step. I ask her what she thinks, and she tells me with great concern that she fears I may have blood cancer. It doesn't make sense to me, because my white cell counts are normal, but just hearing a specialist say the word "cancer" makes my heart drop into my stomach.
What would you do if a doctor told you they are concerned that you might have cancer? I can tell you what I did. I did my best to regain my composure in front of my children, paid for my visit, and then got in the car and sat there, lost. Then I called my mom, I needed to hear her voice and talk to her. She knew what I needed in that moment. Then I prayed a frenzied prayer and called my husband. When we got home I set the kids up with some games to play and went into the restroom where I cried and prayed, and cried some more. Have you ever wondered what kind of thoughts might go through your head if you got news that would drastically change your life? Here is some of what I remember:
What kind of treatment will I need?
Could we afford it?
What will we need to change in order to afford my treatments?
How is this possible? My husband and children are not ready to have a life without me there.
I am not ready to die and be away from my family.
What can I do to make this easier for them?
I need to update my living will.
Could my heart possibly feel any more broken right now?
I spent the next few days soaking up every minute with my family. Taking a drive in the car with the kids, Natalie Merchant's "These Are the Days" came on the radio. It gave me hope.
I decided to skip the GP and go straight to a hematologist. My sister was my support, and my wonderful neighbor watched the kids. He told me that he wanted to test for bone marrow mutations, blood mutations, and secondary causes of my high CBC levels. He also wanted me to get an ultrasound of my organs to check for enlargment (a sign of hemachromatosis). The ultrasound was amazing. I got to see my liver, kidneys, spleen, and heart. They were all very healthy, according to the ultrasound tech, and NOTHING was wrong with them. I really appreciated that good news, so I proceeded to do my now-famous booty dance in the ultrasound room. The tech did it with me!
Did I mention that the hematologist was surprised that the endocrinologist mentioned cancer to me? He said he did not consider it to be a possiblity by any means. I considered making a complaint against her, but "forget it and leave it alone" was all I could hear whispering through my mind.
My bloodwork results came back and the hematologist wanted to see me again. He sat me down and told me that I did not have a bone marrow mutation. Hooray! He then told me that I had a gene mutation that contributed to my high CBC. However, he also delivered the good news that I needed more than one gene mutation to have hereditary hemachromatosis. Therefore, I was not at significant risk for blood clotting, iron overload, or.... cancer. This is where the big smile and huge sigh of relief came into play. His suggested treatment was baby aspirin and possible phlebotomy, but the phlebotomy would only be if my levels went higher. Donating blood can apparently ease the symptoms of fatigue and headache, so I tried that. However, the center I went to was horribly unorganized and I sat in the lobby for almost an hour after signing in without so much as a word or a form to fill out. I will have to try somewhere else, and that is fine with me. If I can relieve my symptoms and help someone else at the same time, it will be truly wonderful!
It is July 5th, and I am feeling peaceful. My views of my life have taken on a deeper hue, but I am also thoroughly enjoying all of the light-hearted moments. I went from hormonal, to scared, to superhuman. My body's ability to create more blood also carries more oxygen to my muscles, so I have more stamina and shorter muscle recovery time.
That, my friends, is a problem I can certainly handle.
By the way, thanks to Natalie Merchant for her song of hope. These are the days to remember, and I have felt the blessings of my life in new, heightened ways:
These are days you’ll remember
Never before and never since, I promise
Will the whole world be warm as this
And as you feel it,
You’ll know it’s true
That you are blessed and lucky
It’s true that you
Are touched by something
That will grow and bloom in you
These are days that you’ll remember
When May is rushing over you
With desire to be part of the miracles
You see in every hour
You’ll know it’s true
That you are blessed and lucky
It’s true that you are touched
By something that will grow and bloom in you
These are days
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you’ll know how it was meant to be
See the signs and know their meaning
It's true
Then you’ll know how it was meant to be
Hear the signs and know they’re speaking
To you, to you
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