Thursday, April 6, 2017

D is for Diagnosis

Well, it's NOT cancer! 

However, it will be time consuming, painful, and extremely annoying. 

After tons of tests and several biopsies, I have been diagnosed with Granulomatous Mastitis

It's rare.

Yay.

It's also chronic.

Double yay.

And the treatment is not immediate. It's a long haul game. It's 5 - 10 months of high doses of steroids along with antibiotics. It'll be painful and it will eventually form an abscess that will eventually start to purge itself. 

Triple yay. 

When I say this is rare - it's really, really rare. My Breast Specialist has seen it twice in her 22 years in the business. I'm her #2. Her colleague who has been doing this longer than her has had 3 cases. 

There is no way to predict it. No way to prevent it. No way to tell where it came from. In some cases it proves to be an autoimmune issue. So, that's just lovely. 

Now I'm waiting on my Boobologist to contact my Rheumatologist and my Hematologist to go over medications. You see, I'm a trial because I am on blood thinners and I am also on a medication for my previous run-in with autoimmune issues. So they have to work through and decide what will work best for me. For a regular patient, the main goal would be to cure the infection. For me, the main goal is to keep me from clotting or bleeding out while we cure the infection. And Coumadin does not play well with others. At all. Too much bleeding is not a good thing. 

I am SO relieved it's not cancer.

SO RELIEVED!

I've spent the last two months absolutely terrified. "How will I tell Alice? What if I'm not strong enough to get through it? What if it's spreading while I'm sitting here WAITING ON MEDICAL PROFESSIONALS??!"

Yes, I am relieved. 

I might actually sleep tonight.

However, I do wish the answer was easier. I wish there was a quick fix. I am so very tired of the pain. And I'm not really looking forward to the medications.

I will go on antibiotics which will cause ALL LOADS of problems. These problems will be extremely uncomfortable. Good times. 

Steroids cause ALL LOADS of side effects that I am NOT looking forward to. When I left the hospital with Alice, I was on steroids. I stayed on them for many months and I gained so much weight. And that dose was small! The doctor mentioned 40 - 60 mg of steroids today. So the vanity side of me is so very, very discouraged. I worked so hard to get to a place where I felt better about myself in pictures and now I'm going to gain it all back and then some. Steroids are going to cause MAJOR mood swings and acne. I'm going to look like a pubescent Pooh Bear. 

AND then there's the pain and drainage. 

And I feel absolutely horrible having these feelings when it could have been much worse. But there it is. 

Yesterday I was crying about potentially losing my hair and my life. And today I'm crying because I'm going to look like a chubby bunny in pictures and none of my clothes are going to fit....again. 

And I know it's horribly selfish. But, again, there it is. 

So now I'm supposed to ice and heat and take Tylenol for the pain. We bought gauze and hand sanitizer for for the potential oozing, which just sounds delightful! And we bought an ace wrap because compression is key. We also bought two bottles of wine because I've earned them.

Now for the special mentions.

I am so thankful for my Boobologist who finally made things happen. Not fun things! But things nonetheless. 

I am also thankful for my mom and my wonderful in-law's who jumped in to help with Alice. It was way less stressful to know she was taken care of. 

I have a village of people who prayed and sent happy thoughts and well wishes and good vibes. I am thankful for each of you.

I am also thankful Tami and Shani were both wrong and it was NOT my twin. ;)

But most of all, I'm thankful for my Beloved. He's had to deal with an absolute basket-case and he handles it so well. He loves me where I am. Always. No matter what rare $#%@ I come home with. 

Tonight I will have a drink to Not Cancer and to answers and to an eventual end. 

Here's hoping I can add to the rare and be a case that heals quickly! 

Now I'm going to go ice my boob. ;)

Until next time.....




1 comment:

rlnolen said...

Wow. Sweet Timberly. I'm so sorry you're going through this, but not that.