Tuesday, September 10, 2013

That Stinkin' 5%.

All my life, I have been in the 5%.

What I mean by that is my medical problems...well, every time before I am diagnosed they always say "There is a 5-10% chance that this is what you have." Low and behold, a few days later, the tests come back and that's what I have and the doctors all look befuddled.

I am a constant "interesting case" to doctors because many of the diseases or issues I have should not be present in a body this young.

At the beginning of this summer I went in to my PCP (Primary Care Physician) because I was bruising easily and I figured my anemia was making a comeback. I was relieved to hear that I wasn't anemic but then I was told that my PT/INR levels were prolonged.

Well, I have no idea what that means, I still kind of don't. I know that it is an issue with how long it takes for your blood to clot. My PCP referred me to a Hematologist Specialist, that was in March.

It is now the beginning  of September and after more tests than I care to mention, we haven't reached a solid conclusion yet. But we are almost there.

Yesterday was my appointment to see how my Factor studies went.

Not good.

She has been confirming and reconfirming all summer long that I have Factor VII deficiency. 

The reason I keep being re-tested?

Factor VII is a really rare problem to have. What makes it more rare for me is that I show no clinical signs of it, outside of comparatively minor bruising.

Also? It is most commonly inherited. Which means it would be problem I would have had since birth.

But with as many operations as I have had, and a normal birth with Gracie, it would have been caught by now.

There is a small number of people who can acquire it later in life, but the general causes of acquiring it aren't applicable in my case.

My doctor told me several times that I am "an unusual case". She even called Stanford and asked them about my case and THEY told her that I am an "interesting case."

See why I am such a strange person?

Basically it runs down to this: I will need a full body cat scan as soon as my insurance approves it. The cat scan is to check to tumors/growths.

This is where it gets kind of scary. There are 3 options of what my problem is. 


  • There is a growth somewhere in my body that is throwing off my Factor VII. That growth COULD be non-cancerous but would need to be removed immediately. I am not 100% sure on this. I don't know if it is possible for me to have a growth in this case that isn't cancerous. This is 100% an assumption. 
  • There is a growth or growths in my body. In some cases, factor deficiencies can be a sign of cancer in your body. If I have cancerous tumors, we will move on from there. Obviously the first step would be removing the tumors as soon as possible.
  • I have no tumors or growths in my body. That would most likely mean I am a Factor VII hemophiliac. In which case I will be referred to the Hemophilia center in San Francisco to further figure out why I am so weird. 

I asked my doctor: "So best case is that I am a Hemophiliac and worst case is I have cancer?" She said "I can't tell you which is the best or worst. With cancer, you have cancer and will require surgery. With Hemophilia you have a disease that will impact the rest of your life and is very expensive. So I don't know what is worst case or best case. Right now, we have to just get the cat scan and go from there."
__________

At first I was hoping for the Hemophilia. Cancer is scary and I just don't want to head down that road. But then I realized that it would immediately make me high risk for pregnancy and could make pregnancy life-threatening for me. That had me pulling for Cancer because then at least I could have babies and not die from giving birth. 

I am trying so hard to not focus on either one until we know more. Freaking out doesn't do any good and won't fix or change what's happening. But still, as I am sitting here in my dining room, Daniel at work and Gracie down for her nap, I am scared.

But it helps to know that I am SUPER lucky because so many people have it so so much worse than me.

Even now my cousin is fighting Leukemia. I look at him and he is my hero. He is kicking cancers butt DAILY. He is so strong and I figure if he can be strong about dealing with a horrific disease that has been plaguing him his whole life, I can be strong about something like this.

So for now we wait for the Cat Scan.


5 comments:

  1. OH Tanika! You will definitely be in my thoughts and prayers! Keep us updated!

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  2. Holy cow. I remember being so ticked at the world over a tumor on my thyroid. Looking back it was scary, but it was nothing compared to the diseases some people have. I'm praying for you Tanika, by name. You are seriously one of the bravest people I know. Cheerio sweetie.

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  3. Oh girl, I'm sorry you've got to worry about this! Love on that sweet baby girl of yours and know that you are in my thoughts and prayers. Please let us know what you find out!

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  4. What a terrible spot to be in. Sometimes not knowing, and just waiting is the hardest part. I really hope they approve it soon and that things can get figured out!

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  5. Well thats just terrible. We always take our health for granted but it really affects our quality of life when something does go wrong. I hope everything goes well and they can find out what is going on soon!

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Thanks for taking the time to say something back! :) One sided conversations are never any fun! :) Thanks for reading!