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.....




Monday, March 13, 2017

RECASTING!

Y'all, March and I do not get along.

When I left my original Boobologist's office on March 1st, it was with the understanding that they were working on scheduling a biopsy surgery for first thing on the 13th (today) and would call with the details when finalized. 

And I never heard from them again. I called almost every day because they needed to contact my Hematologist to discuss what would need to be done with my medication. 

I called to leave my cell number.
I called to leave my Hematologist number.
I called to say, "I can't have surgery next Monday without instructions from my Hematologist" about a MILLION TIMES! 

I was told all of these things were being added to my chart.

Because I understand the seriousness of my medications, I emailed my Hematologist the afternoon I got home from the surgeon's office. His nurse said she would call me by end of day or the next day with directions. And I never heard back from her either.

The next Monday I called and spoke with someone else in the office who I could tell wouldn't be helpful. And Tuesday I finally contacted my favorite nurse. I don't like to call her first because I'm pretty sure it's not her job! She isn't really my doctor's nurse! BUT she loves me and she's good at her job. 

She immediately lets the PA know she needs to call me. 

My right arm has been sore for a few weeks now and my joints have been a bit puffy. And once again, I worried about a blood clot. So at 4:30pm on Tuesday night, I loaded Alice in the car and I headed to the ER. Hint for future reference: if ever you need to go to the ER, say you think it's a clot. They pay attention really quick. 

As I'm filling out paperwork, the PA from my Hematology office calls. I let her know where I am and she says "you could have called me, I would have ordered a Doppler." GIRL!! DO NOT START!! I've been trying to get SOME SORT OF MEDICAL PROFESSIONAL TO CALL ME BACK FOR 4 DAYS!! No ma'am. I am in no mood.

So I have my 5th Doppler scan and my arm is blood clot free. The ultrasound tech gave me some sass about being worried about blood clots when I'm actively taking Coumadin. He hinted that I should just be more compliant with my doctor's orders. 

Honey, you do not know me. With my history of clots, I try not to mess with that. I was on blood thinners for my entire pregnancy and my placenta was still covered in clots. So what,  I have an ER bill now. It's better than throwing a blood clot at home in front of my 4 year old. He apparently had the same condescending comments for the ER doctor who quickly told him people with Antiphospholipid Syndrome and Lupus markers can still clot on blood thinners. Bless him. It made me feel better about going in. 

Thursday rolls around and I am at a loss. After school, we take Alice to the Livestock show. While there, my favorite nurse calls me. "Ummm, (the PA) said you were in the ER! What is going on!" 

So I tell her. I tell her everything. I end it with "and now I'm freaking out because there's a 10% chance this is something serious and I am the ONLY ONE concerned!!" She writes everything down and vows to make something happen. Bless. Her. Melissa is my favorite.

She starts harassing the surgeons office. She mentions that with everything going on, the PA will probably want to see me. Greeeeeaaaaaaat. 

Friday morning I FINALLY hear from the surgeon's office. It was the nurse asking for the phone number to my Hematologist office. Nope. I'm out.

I hear from Melissa who wants me to come in that day to meet with the PA. 

I pack Alice up again. (When I mention I need to go to the doctor, she now asks if it's my Boob Doctor. Probably this is my fault.) I go over the timeline with my PA and she does an exam. She mentions they have a Breast Specialist on site so I take her card for the referral. She also mentions my Hematologist is also an Oncologist that handles this kind of stuff. I know this. I just went a different direction! He doesn't usually give me breast exams so I went with my OB. And plus, he's a boy. 

But I should have started with him. And now I'm only going to them. They are Texas Oncology after all. Now I know I will get the information I need and it will all be in one place. Plus, they validate parking.

I sign the paperwork to get my results sent to my Hematologist. The PA called this morning to tell me that Dr. Foote would like to do a MRI before they just start cutting on me. This seems reasonable. So now I'm waiting for my MRI to be scheduled. 

And I still haven't heard from my original surgeon's office. 

I hope to have better answers soon.

Like, really, really soon.

Until next time.....



Thursday, March 2, 2017

B is for.....

...Boob.

One dumb boob.

A little over a month ago, Alice spent some time under my right arm with her heavy head resting on my right boob. The next morning I woke up and it hurt. I noticed a line of swollen something in my right breast. I thought it was a muscle and tried not to sleep on my right side (which is how I ALWAYS sleep) and I tried not to exercise or upset it more. I even rubbed muscle cream on it to try to help alleviate the pain. 

I googled stuff. I didn't have any of the more usual symptoms of cancer. I worried it could be a blood clot but I'm on blood thinners and I stay therapeutic for the most part. In my world, if it's something not right - it's a blood clot. I questioned whether or not I needed to go to the doctor for it. I thought it was a muscle! Most of my medical charts are substantial - I don't want to have "sprained boob" added to any of them. Seriously. How lame would that be?!

But after a month, it was still there and the panic started to set in so I scheduled an appointment with my OB/GYN. 

I had to wait for over an hour to see her so by the time I get to the room, I'm a complete wreck. While the nurse is checking vitals my doctor comes in and asks why I'm there. I immediately start crying. The nurse said she would come back for the blood pressure. Spoiler alert - it didn't do any good to wait on that. My doctor does an exam and says it's not a muscle and that she's calling her Breast Surgeon to try to get me in that day. 

Enter COMPLETE FREAK MODE. SURGEON! TODAY!

They confirm that the other doctor can see me and they send me down to her floor. I'm sure they told me her name but I heard nothing but "7th floor" so I just walked around until I read something that said 'breast' on the door and went in. 

I picked up a new 'ologist' - Boobologist. Technically 'Surgeon' but 'ologists' are what I collect. New nurse, new vitals check. To say my blood pressure was within normal limits would be a lie. And so I also get orders to go back to my Cardiologist. 

The surgeon looks at things and feels around and orders a mammogram and an ultrasound. She thinks on a scale of 1-10, my Freak Mode level should be at a 1.5. I like her. She's quirky and straightforward and thorough. 

The next week I got to have a baseline mammogram, a diagnostic mammogram, and an ultrasound. And then I bought ice cream and more wine. 

This is my side rant about mammography machines. THEY ARE THE DUMBEST DESIGN EVER!! Seriously! There HAS to be a better way! Forget walls or Russia or other planets. THIS should be what's important!!! FIND A NEW WAY, WORLD!!!  I walked away with 2 sore boobs instead of 1.

Everything looks normal. They just look like boobs. Apparently I have extremely dense breasts. The Radiologist mentioned this several times. I'm not sure if I was supposed to respond with "thanks" or 'I'm sorry." 

While everything on the imaging tests look good, there is still something there so we're scheduling a surgical biopsy to be sure. There is only a 10% chance it is something troublesome. I wish she would have said 2% but we don't know each other that well yet. 

I'm hoping this is a just a really expensive way to find out my dense boobs are extra sensitive and I take longer to heal than others. We'll see.

So now I'm waiting on medication instructions from my Hematologist and the surgery schedule from my Boobologist. 

Ironically enough, my blood pressure was decent at today's Rheumatologist appointment! So either I've come to terms with things or my anti anxiety essential oil regimen is working today. Whichever, I'll take it! 

Fun side story. I had my follow up appointment yesterday and while I was in the waiting room, the news was on. They were doing a story on some HPD officers who were involved in a shooting. They were talking about how one of their daughters was flown down to be with him. She was escorted to the airport by Boston PD, flew free thanks to American Airlines, and picked up and escorted to her dad by HPD. Y'all. My eyes are filling and I'm looking EVERYWHERE for the stupid remote thinking, "SHHHHHHH!!!!!! They haven't checked my blood pressure yet!! I DO NOT NEED THESE EXTRA FEELINGS!!!" Cops and their kids - they get me every time. 

So now we wait. 

And this isn't meant to scare or incite sympathy. That's not my goal. This is just my outlet. My way of organizing my thoughts and remembering the details. My way to find the funny amidst the stress. 

I'm thankful I finally went in. I'm thankful Dr. Miltenburg is being extremely thorough and hasn't diminished my feelings or my thoughts. And I'm hopeful this will be over soon. 

Until next time......

PS: Never in a million years did I think I would be blogging about boobs. Yeesh. It's just so unladylike! ;)

Thursday, January 26, 2017

Pete and Repeat

I managed to make it to my 30's before I developed a cussing habit. Seriously. 30's. 

So it's really inconvenient that around the time I developed a nasty habit, I would be living with a human sponge. I even blogged about my fears back before she had words. 

Life was easier back then.

As words come up, we will tell her "that's not a very nice word to use" or "you should not say that." She knows which words are appropriate and which are not. 

She will come to find you wherever you are to let you know "they said 'shut up' on the TB!"
Responsible Adult: "Alice, don't say 'shut up'"
Child Too Smart for Her Own Good: "I didn't say it!! So-and-so said it!" *smiley face/blinky eyes, obviously this doesn't count because it's a direct quote. 

She will immediately let you know that you should not say 'dumb' or 'stupid'. She also fusses when you say 'die' or 'killed.'

She has been known to occasionally drop an unsavory word when frustrated. Or when she knows we're frustrated, she will say it preemptively. Just lovely. 

She will also mumble when dissatisfied with an answer.  
Reasonable Adult: "Excuse me?!"
Child Too Smart for Her Own Good: "Noting!"

I'm pretty sure it wasn't 'nothing'! 

She said "what the heck" the other day and I fussed. So she said. "Okay, okay. What in da world."

And now this week. 

A few days ago, I dropped something and said "shoot" (really! I promise! I would TOTALLY confess if that hadn't been the case!)
She immediately jumps in with "Mom, you shouldn't say 'sh&#!"
A Horrified me: "Alice! I did not say 'sh&#'! I said 'shoot'!! Do not say that!"
Alice: "Oh, okay."

And then yesterday I said "oh dang" and again, she immediately chimed in with "don't say 'damn'."
"ALICE!! I didn't say 'damn', I said 'dang'! DO NOT SAY THAT!!!!"
Alice: "Okay, okay! Caln down! Caln down!"

Y'all. We're not going to make it through the teenage years with the amount of sass this child ALREADY exudes. 

Her ability to figure loopholes is staggering. Her vocabulary knowledge is worrisome. 

While some of her words are still hard to understand, ALL of the bad ones come through 100% clear. 

I'm waiting on our call to come to the Principle's office. 

And honestly, we did this to ourselves. ;)

Until next time......