Hair we go again!

Well hello, hope you are all having a nice summer in spite of the daily rain. I can't believe that next month will be a year since my diagnosis! And I'm not done yet...

My radiation burns have healed and I have more energy. This picture was taken at Becca's graduation and I am so happy that I have been able to share in some happy times like awards night and graduation parties, BBQs. Sue and I were even able to attend the Princeton Seminary graduation to see Amy, Grier, and Leigh get their MDivs. The ceremony was so beautiful and it was just meant to be. We showed up on the doorstep of the Chapel (without tickets!) and I was pondering what to do next. When I looked up I saw Amy. I hadn't seen her since right before surgery so it was an emotional reunion. Within minutes she had tickets for us and we got to be present for this moment. I am only sorry that I was unable to make the trip to Indiana for Jon and Amy's wedding over the 4th of July, but from all accounts on facebook - it was spectacular!

One is only allowed to heal for so long before the medical profession finds you and decides that it is not over until it is over... So on Monday, June 29th I had a CT scan to check on the pneumonitis at 8a.m. at Aria Bucks. In case you're wondering what I'm talking about, Frankford Hospital (Torresdale and Bucks campuses) is where I have had all my treatment. At some point, they decided to change their name to Aria Health System. The name apparently is arbitrary and "doesn't mean anything" so I say - don't change it... It is hard to say and should only be used in operas...

Monday afternoon I had an appointment with Dr. Simmons (breast surgeon). My team (Col and Sue) came with me as usual. It was good to see her again. Unfortunately when she asked me about my "summer cold" (that had lasted 2 and a half weeks and settled in my ear...) she started me on levaquin and made and appointment for me with an ENT, Dr. Gabay...my first sinus infection...I'd been off bactrim for what? A week? We also discussed the surgery and I came away with scripts for pre-op testing and preps. If all goes well and I can get rid of this sinus infection, I will be having a mastectomy on my left side with bilateral reconstruction on August 11, 2009. Dr. Simmons was able to pull up the results of my CT scan and I am happy to report that the pneumonitis has resolved (cleared).

Since Dr. Simmons was pretty clear that she wanted me to start the levaquin that night and not the next day when she had scheduled my appt with Dr. Gabay, we had to have the prescription filled at CVS and not Aria pharmacy (since it was after 5 and closed). Co-pay of $60!!! vs. $15...hmm. Anyway, on Tuesday, June 30th, we went to see Dr. Gabay at 7p.m. The good news is that we already knew where his office was (not me of course, no sense of direction...) since he is in practice with Dr. Gottlieb, my plastic surgeon. I'm thinking ENT/Nose Job. Interesting bunch of patients in the waiting room. Sitcom written all over it. We had to wait a bit so I spent the time trying to figure out which patients were there to have their makeup tatooed on... and oh, I forgot to mention that I have bilateral tendonitis that is affecting my wrists so I was unable to remove my own health insurance card from my wallet (don't worry, it's getting better and I am alternating my braces which helps). When we were called into the examining room we had another wait. The three of us were amazed as we watched one of the staff dump all the metal equipment she could find into one small sink in the room we were in. I am hoping that this was just a "stopover" on the way to autoclave... When Dr. Gabay did come in with his fellow, he was very nice and saw fluid in my middle ear...requiring prednisone, claritan, nasonex, levaquin....he wants to see me when it clears and do a hearing test. I said that I had an appointment scheduled with Dr. Gottlieb for Monday, July 6th, but he said that it would not be cleared by then...and the only thing that kept going through my head was, "Calling Dr. Gabay, calling Dr. Gabay, come right away.." as if I was in an old episode of Bewitched. (And yes, Kara Mullican, I am well aware that you have no point of reference for all my Bewitched comments).

So, are we up to Wednesday July 1st yet? I was scheduled to have my PET scan at 7:45a.m. (first appointment - YES!) The trailer moved from the ER parking lot to the parking lot right in front of the out-patient entrance. The PET scan can show (sometimes) if the cancer has spread, but I have come to find that it is not as good at showing a new primary. Since I have had 2 other PET Scans I knew what to expect and I was a little anxious this time for different reasons - none of which had anything to do with cancer. First, I was concerned about the techs finding a vein to inject the radio-active material. Last time it was not an easy process. I ate high protein/low carb diet, drank more water than any human should ever have to, and still... This concern was further amplified by the fact that it is painful to turn my arms/wrists (tendonitis). I had asked if my port could be used (and the answer is YES, it can) but the nurse had so many reasons why she didn't want to do that that I asked her to check for a vein first. She got it in my hand first try and it was perfect! (When I went to the chemo room after the scan to have my port flushed, the nurses there rolled their eyes and said that when I have another PET scan to come to them first and they will access my port for me...) My second concern was that fact that I didn't want to choke during the test. Draining sinus infection, laying still flat on back for 45 minutes....hmmmm. But I was fine. This is the test where you have to spend an hour in a dimly lit room with a blanket before you get scanned, and then you are scanned in 6 "slices" for 6 minutes each. I have always found this to be a time of prayer for me and have felt held and surrounded by God. It is very peaceful. I have not gotten the results back yet but our phone message system at home has been messed up and we are still waiting for Verizon to fix it. I am not in a hurry for these results but if I don't hear from Dr. Kennedy soon I may consider calling her at some point.

On Monday, July 6th at 2:20p.m. I had an appointment with Dr. Gottlieb to talk about his part in the upcoming surgery. Originally, right after diagnosis I was considering the option of using an abdominal flap for reconstruction - for many reasons. Now, however, I have opted for the expanders and silicone implants. My body has been through alot this year and not only am I not up for the strain and recovery of major abdominal surgery, but that kind of surgery can be done only once and I am preserving all my options. Consideration has been taken in case the pathology report on my left breast comes back positive and also in case of recurrence requiring further treatment. That being said, the surgery is turning out to be more involved than I expected. Because I had alot of radiation to my right side, Dr. Gottlieb is going to use some skin/muscle from the right side of my back to create a flap for the expander/implant. He was impressed with how good my skin is after reading the reports, but he feels that the radiation interferes with the skin's pliability. (I know this is more information than you ever wanted to know but I'm almost done with details) After Dr. Simmons is done with the mastectomy, he will create the flap, and put in the expanders. I will have 4 drains this time and be wrapped up like a mummy. He says that I will be in the hospital for 3 or 4 days...I'm thinking...no....I was out in less than 24 hours last time so that I could go to Sue's Nursing School graduation...MAYBE I will be there 2 or 3 days...Then I will see him frequently over the next 4 months or so until I can have the next surgery....and more (but I don't want to ruin the surprise...so keep reading)

I think that is enough to write right now. I hope to blog more regularly so that I don't have too many of these "marathon" entries. Thank you for continuing to follow my story - it means alot. Talk to you soon. Enjoy the summer.