UPDATE from 1-29-09

Boy. These blogs are getting harder and harder to write because honestly the information we have learned in last few trips to the City of Hope haven’t been thoughts I prefer to reflect on. My Mom said this afternoon that she’d like to blink and have it be one year from now, with all of this in the past. I feel some those same thoughts as I’m writing this.

Today we met with the Plastic Surgeon at the City of Hope who specializes in reconstruction. Once again, this meeting didn’t go exactly how we’d hoped either but I think that the main reason for my discomfort with the news was because of my general lack of knowledge on how long reconstruction actually takes and what’s involved in the process.

It’s certainly clear to us now that Mom’s only surgical choice is a Double Mastectomy. We began understanding that possibility with the last biopsy and mammogram process, discovering the amount of tissue involved was nearly double what they had initially thought. We will receive the results from the last biopsy this coming Monday, February 2nd when we meet with her main Oncological Surgeon, Dr. Kruper. The hospital would not give Mom her biopsy results by phone and instead preferred that she meet with the doctor directly, which was of course immediately alarming. I feel that the Doctor wants to discuss the biopsy results with Mom personally because she wanted to convince my Mom that a Mastectomy is her best option (my Mom was clear that breast-conservation was her main focus in prior appointments). I feel that Dr. Kruper probably wanted to ‘break’ THAT news in person and not that the biopsy results reveal a different type of invasive cancer. I know there’s no way for me to really ‘know’ that…but I feel really confident about my theory, because I sat through the entire mammogram process with the technician who showed me EVERY detail they were trying to see and there was nothing that looked any different on the monitor to my untrained eye. She seriously gave me a ‘mammogram lesson’ and pointed out every little detail to me…it wasn’t like they were trying to hide something. Also, I had a great conversation over the phone with the Physicians Assistant which I shared my Mom’s fear that there was ‘something they were not telling her’ to which she assured me that they don’t ‘beat around the bush’ and that my Mom’s feelings are perfectly normal. I would truly be in shock if the biopsy reveals anything different than her original diagnosis.

Another factor to support my theory about the ‘biopsy results having to be delivered in person’ factor is her Plastic Surgeon’s reaction today to her openness to a Mastectomy. As far as he knew, and my Mom’s files reflected, she was not at all interested in a Mastectomy. He sat basically wordless and awkward in the exam room trying to figure out how to delicately begin the conversation about his preferred method of treatment. When my Mom came out and said, “I’m understanding now that a Mastectomy may be my best option” his body language immediately relaxed, he became more personable, sighed and said, “Doctor Kruper will be very glad to hear that.” He was like a completely different person after that point in our visit. He also said that if his own family member was facing this exact same scenario, that he would recommend exactly the course of treatment he presented my Mom with today.

What we did learn today about her course of treatment was hard for me to handle…not that any of this has been easy. The Plastic Surgeon says that Mom’s reconstruction will take 5 different surgeries over a 12 month period, which floored me. I just assumed that ‘Immediate Reconstruction’ was just that. What I didn’t know is that by “Immediate Reconstruction’ they mean the ‘Beginning session’ of Immediate Reconstruction. I honestly thought it would take a couple of months, but not an entire year. Basically, Doctor Kruper performs the Mastectomies, then the Plastic Surgeon enters the room and places a tissue expander type of device behind the chest muscle wall. Then, they begin pumping small amounts of saline on a weekly basis into the expander for a month. Approximately 3-4 months later, they remove the expander and place an actual implant into the expanded area. Then there are several other outpatient surgeries required to complete the process, which will take a year total. A YEAR. No wonder she wants to blink and have this all in the past.

Another factor that he was quite blunt about is that her body appearance will be completely different after surgery. The end result will by no means let her have the same physical appearance she currently has. There are new implants currently being tested by the FDA that seem to be a more natural & perfect option, but they are just not available yet.

Another thing I wanted additional information about is the ‘maintenance’ involved with the reconstruction. I figured that there would have to be follow up tests through the years and I was right. The Plastic Surgeon says that basically all implants fail at some point, with the exception of the NEW implants we hope the FDA will approve soon. Mom is recommended to have MRI’s done on an annual basis to make sure there isn’t a ‘silent leak’ or actual rupture of the implant.

So basically, things will be different forever. I can’t wrap my mind around that fact right now, and Mom is in the same spot. Today’s office visit with the plastic surgeon has left us with the same shock we experienced the first day of her diagnosis. So much fear and uncertainty. She has 3 more appointments at the City of Hope next week, 2 on Monday and 1 on Friday and I am so overwhelmed at this point that I couldn’t even tell you which Doctors she’s meeting with.

I want to tell you about a few more blessings along this difficult path. First of all, I can’t tell you what a blessing it has been to have Rhonda with us at every appointment. Rhonda was down from Alaska for the winter and when all of these health issues began to surface, she has extended her stay to be here for my Mom. I don’t know where we’d be without her. She is another one of those Angels I spoke of in my previous post. Rhonda entertains my sweet Ruby while Mom, Dad and I are in the appointments…and she does an AMAZING job. I learn from Rhonda every time I see her with Ruby. She inspires me to let Ruby explore the environment. Rhonda takes Ruby out in the Rose gardens to pick up and sniff flower petals, the lawns to pick up sticks & pinecones, and always ‘magically’ has quarters in her pockets to buy fish food at the koi pond. Ruby adores her and I have such a peaceful feeling knowing that Ruby is in such good hands while I’m away from her.

The other blessing in all of this is Ruby. Ruby is such a crackup and lightens our heavy hearts on each trip. Her newest thing is holding random objects up to her head saying, “Hi.” as if they were a telephone. I could understand when she started doing that with the remote control at home, but my favorite unconventional and random objects since then have been: her socks, an orange and a Goldfish Cracker. She makes us laugh SO MUCH, brightens our days and I can’t imagine going through this without her.

I wish I had better news to share, and am sorry it has taken me this long to get the word out. I’m sure you can imagine how overwhelming this is to all of us. I feel terrible that I haven’t gotten back to a single one of you that replied to my last post. I feel so blessed to have received such loving responses and hold each one of them close to my heart.

If ever there was a time when we needed prayer, this is it. I know we are in good hands, and that our strength & hope will return soon.

Love to all,
Alissa