Friday, July 25, 2008

Adventures at the U

When you're not looking, suddenly, you become a science experiment.

So, I had kept my standing appointment with my breast surgeon on the 15th. I wanted him to see the girls post-vanco. They didn't seem to be getting any better. The nurse was rather faint when she did my pre-appointment check and when the Dr. came in, he was accompanied by med students. I am all for education, so, bring on the med students. All of them were rather speechless.

Dr. Jay (that's what we'll call him) was very concerned and didn't think the infection was gone. Now, keep in mind, the colors of my breasts were changing rapidly, the size was increasing, the pain was intolerable and I had just finished an IV course of the most toxic antibiotic known to man. Okay, the infection isn't gone. I'll go with that. He gave my Percocet for pain, another anti-biotic and Ibuprofen for swelling and off I went on my merry way. He also ordered a CT to look for Cancer since the whole MRI thing didn't work out to well.

Lindi and I noshed at a lovely Italian eatery in the Avenues, Cucina, and then went back up the Huntsman for the CT, then back home for the evening. I took my first round of meds and was cruising right along... until it was time for my second dose. Then came the nausea. And vomiting. In massive amounts. I took two anti-nausea pills and made myself sleep... and upon awakening, the vomiting resumed with a vengeance.

So, at this point, my breasts are turning a bluish color, I can't keep water down, I am in so much pain I am curled on the couch and I make a phone call to Dr. Jay. He said, in no uncertain terms, that I was to be admitted immediately. Lindi came right home from work and I was put in a nice window bed at the U.

And here goes the adventure in medicine.

The first group - and yes, I mean group - of doctors to see me clinically was Infectious Diseases. Now, there's a welcome wagon. Funny enough, they all agreed I was not infectious and did not currently have an infection - and probably never did. Now, this is the premise we had all been working under this entire time. The lovely female doctor of the bunch told me that at some point in my healing process after my breast reduction, I had Pyoderma Gangrenosum following Breast Reconstruction. Now, that sounds like a lively diagnosis, doesn't it?

Basically, it's rare. It could not have been predicted. When the surgeon cut into my breasts and did my reconstruction, the breast tissue did this little mutation kind of thing - it decided it didn't like to be bothered and start to die. Yes, the tissue just decided to die. That's why it took nearly 9 months to heal completely. Had the Wound Care doctors been aware of this kind of disease (did I mention rare?), I could have been treated with steroids and medication they use for rejection of donor organs and been healed much quicker. Frankly, it's a testament to the Wound Care Doctors that they were ever able to heal my breasts to begin with.

So, after my fine needle aspiration, which the breast tissue considered traumatic, it decided to freak itself out again.

The Infectious Disease team said that in most cases, if steroids don't work, complete Mastectomy is the only way to stop it from spreading. Lindi and I spoke after they left and had some heartfelt tears and coming to terms with a mastectomy. No woman wants to completely lose her breasts. I wanted a reduction to be able to do a regular breast exam, to be sure to catch anything that would come my way, not to cause myself to have a mastectomy at 35. But Lindi, being amazingly strong, convinced me what I knew in my heart - I am still as much of a woman with or without breasts.

Oh, and they took pictures.

The next group of doctors to come into the picture was the Plastics. Plastic Surgeons. They had no clue and differed to Dermatology. But at least they gave me Lortab.

Dermatology took pictures, then did a punch biopsy. Dr. Betsy (a lovely lady from the south) did an amazing biopsy. I didn't feel a thing.

And so began the daily ritual. Morning shift of the nurses would come in, ask to see my breasts, give me pain medication and nausea medication; Infectious Diseases would come in, look at the girls, take pictures; Plastics would come in, look at the girls, take pictures; Dermatology would come in, look at the girls, take pictures, and then it was time for lunch.

The parade became crazy. I started writing doctors names on the wall just to remember who in the hell had gazed at my breasts!

After 6 days, the biopsies and blood work and cultures and tests all came back. The consensus: Fat Necrosis (dying breast tissue). The Plastics didn't want to jump the gun on Mastectomy, so the Derms took over my case and decided to listen to Infectious diseases and start me on steroids, Calcium and Vitamin D. I have 2 weeks of that before I go back into Dermatology with a new treatment plan.

I think I was mostly frustrated because during this whole ordeal, I saw my surgeon, Dr. Jay, once. He was the one who admitted me, and where was he? He should have been giving me my treatment plan and diagnosis, not some random Dermatology Doctor. In fact, when the guy who was covering Plastics consultation came to my room and said they were releasing me, I strongly and firmly said, "You are not releasing me without A: a diagnosis and B: a treatment plan." He looked shocked. I had been sitting in a hospital room for 6 days and had yet to be told what all of these doctors were ruling out or testing for and then they were done with me, send me home? My ass.

The Plastics doctor left and came back with the two Dermatology doctors who I'd been working with. The first one, Dr. John, (Chairman of Dermatology, I later found out) said the same thing, that they were going to release me. I looked at him and said, "I don't think so." He kinda blinked at me and I calmly said, "I have been in a hospital bed for 6 days and I still don't know my own diagnosis. I still don't know my treatment plan. I am not any better today than when I came here. I am on the same medication (pain killers and anti-nausea drugs) than when I started. Wouldn't you be a little apprehensive about leaving, too?"

He nodded and I think it finally sunk in a bit. Everyone had been so busy testing and taking pictures, they left the patient completely out of the loop! He gave me a diagnosis and a two week treatment plan and then he said, "and we'll go from there, okay?" At that point, I was fine with that - at least it was a direction - something to shoot for - a treatment to try!

So, the run down of Dr's include, Dr. Jay (MIA), Dr. Betsy, Dr. John, Dr. Justin, Dr. Jackie, Dr. Claudia (and two colleagues I didn't catch their names), Dr. Mann... and these were the ones I can remember. I am sure there were more medical students than I ever really paid attention to.

So, I am home. After a little SNAFU with the pain meds (they forgot that I started vomiting after I took Percocet and sent me home with - Percocet), I am feeling much better. I had visits in the hospital from my dear friends Christopher, Teinamarrie, Shane and Dawn and of course, my family. Lorene sent the most beautiful Gerbera Daisy arrangement (thanks Rene), my family sent an amazingly gorgeous pink and yellow Lily arrangement and the Ladies at the VFW Auxiliary also sent a blue and yellow arrangement. My hospital room looked like a florist shop. Dawn brought me lilacs from her own garden, which were simply gorgeous. The flowers brighten up my living room. I should have gotten good pictures when they were still in perfect bloom!

I am very weak and very tired and wish this ordeal is over so I can go back to work and be vaguely normal again. I still need a spotter when I take a shower (embarrassing) and can't sleep in one position very long (annoying). But my kitties keep me company and I am catching up on all the TV I can handle.

Well, until next update - be well.

HAPPY BELATED BIRTHDAY to LORENE! I am so sorry I missed your birthday.

Saturday, July 12, 2008

And the saga continues...

I wish I could say I have gotten better. I really do. In some ways things are progressing and others... ugh.

The staph infection took a turn for the worse and my doctor determined I had MRSA, which is a medication resistant staph infection. Very scary stuff. She changed my medication to vancomycin, which is the only medication they are currently aware of that fights MRSA. It, in a word, sucked. I had to dose every 8 hours and the treatment itself takes an hour and a half. They had to place a midline, or a fake vein, in my arm because the vanco eats vein tissue. Yes, it eats the tissue. I have to say, the midline was much better than the IV placement and a lot less painful. The dosing screwed up my sleep schedule badly though since I couldn't get more than 4 hours of sleep at a time.

I continued the treatment until last week, when I visited the radiologist and they drained two large pockets of infection, one from each breast. Now, I have had migraines, spinal taps, broken fingers, dislocated knees and shoulders and by far, the needle aspiration last week was the most painful thing I have experienced. Thank goodness for Lindi who helped me focus my thoughts on her and not on the 18 gauge needles sticking out of my breasts! They removed about 15 CCs out of one and 10 out of the other, and, gratefully, it showed the vanco did it's job and killed all present infection in my body.

So, now, surgery. I met with a general surgeon for a second opinion and he agreed I would need surgery, and I definitely need a breast specialist. They will probably take the remainder of my breasts, which I am trying to get "okay" with. The surgeon was very sweet and encouraging when he told me of the options of removing fat from my belly and remaking my breasts or implants. I was very strong in my words about how I feel about implants after the hell my mother went through. I think I would rather be without breasts than risk all of the complications of rebuilding. I meet with my breast surgeon on Wednesday to go over all the details and set a surgery date.

My job has been amazing. I was approved for short term disability within 24 hours of submitting all the paperwork via fax AND they also approved FMLA (even though I didn't file for it) in ADVANCE of me needing to return to work, in case I need to take additional time off when I finally return to work. When i have a surgery date, I only have to make one phone call and my STD extends another 30 days. Wow. I have two co-workers who are working my client and have just jumped in to do whatever they can to hold down the fort. I don't have to worry about a thing.

Needless to say, I wasn't able to plan and execute our annual BBQ event for Lindi's b-day and I feel really bad about that. We still had a nice day together, albeit indoors and sitting a lot, but she seemed to enjoy having me with her all day long.

My family and a handful of amazing friends have really stepped up to make this latest bout of the breasts tolerable. I am so blessed. I'll keep everyone posted on the latest.