Monday, September 12, 2011

Excited & trepedatious

I had 2 appointments in Houston today. The first was with the breast oncologist, Dr. L. The second was with my new plastic surgeon, Dr. C.

Dr. L was pleased to see me. She was also extremely pleased to hear how well Rachel is doing. She suggested for me to try yoga, pilates, accupuncture, and possibly a different medication in order to control my pain. She was very excited that Rachel was developing so well. She also let me know that they are working on projects to hopefully keep women with genetic histories like Rachel's from having to walk this journey I have walked. She was just in the news with an article about my type of cancer.

Dr. C was quite nice too. He, of course, was unsure what exactly is causing my pain. He said that the weight of my implants could be causing my pain issues, but he's never had anyone come in with the same type of pain issues I have. He gave me 3 of the same options as my local doctors. However, he added another option: another surgery but using my own tissue this time. There are a few down-sides to this option. One: it is a long and involved surgery. Two: the amount of tissue I have in my abdomen is minimal, so the resulting breast mound will be fairly small. Three: the surgery will involve some fairly intensive pain and leave at least one more scar. Four: the surgery cannot be done until December. However, this option is my best bet. So I'm scheduled. I don't know what I'm going to do until then, but that is my plan for now.

Tuesday, September 6, 2011

Another count-down...

... until we leave for Houston. A week from now I will hopefully be in Houston getting ready to arrive at MD Anderson.

Right now the plan is to drive my father-in-law's Ford Fusion to TX. Neither of our vehicles are long-distance drivers (1995 Jeep Grand Cherokee Limited & a 1988 Ford Thunderbird Turbo Coupe), so we have to borrow a vehicle. We'll be leaving Sunday morning pretty early & driving straight through all 900 miles. My first appointment is a check-up with my breast oncologist, Dr. L. She's the wonderful doctor at MD Anderson that specializes in young women with breast cancer (that's me), BRCA1 cancers (that's me), and cancer treatment while pregnant (that was me) -- so I was a trifecta for her! After that I will be meeting a new plastic surgeon to hopefully address the pain issues I'm having with my reconstruction. Since I've never met him, Dr. C, I'm not really sure what to expect. However, since I'll be at MD Anderson, I'm sure he'll be great! He's also supposed to be setting me up for a referral to a oncological pain doctor. At least one of MDA's pain doctors has published an article about Post-Mastectomy Pain Syndrome (PMPS). I'm expecting that will be the diagnosis I am handed.

From what I've read, PMPS does not have a "cure" merely band-aids that are supposed to make life more livable. At this point, doctors aren't entirely sure what causes PMPS nor how to treat it. There are some theories about how to prevent it, but even those are not guaranteed. They've identified women who are more likely to suffer: young (that's me), experience neuropathy (that's me), high BMI (not me yet ;-), extensive axillary dissection (sort of me since my tumor was in the axillary tail of my left breast), and some others that I've forgotten. So again, I'm kind of a trifecta for this syndrome. :-( Some of the treatments for PMPS are NSAIDS (BTDT with OTC as well as Rx), neuropathy drugs like Lyrica & Neurontin (BTDT with serious side-effects), therapeutic massage (I'm trying, but my insurance won't cover it), and biofeedback. The worst part is that I've already tried most of the remedies, but not yet found relief. That will severely limit what this doctor can do for me. However, I'm hoping that the unmet Dr. C & the unknown pain doctor will be able to give me a plan.

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!