The week after

Hi Team,

Although I wanted to leave my wonderful news up as my top post for a while, thought it might be time for another update. Over the last week, every day has been better in terms of how I feel physically. I still have to keep gauze covering my inscisions - and I seem to have a lot of them, 5 total. I have to wear a compression bra at all times - a sports bra that clasps in the front to keep my implants from moving around while my body creates scar tissue around them. Most of the time it's just soreness all over my front. My reaching ability/range of motion is very difficult, feels like the muscles in my arms haven't been stretched out for months. So, working on the arm stretches. The worst of it physically has been that every night at least once I wake up with really bad cramps in my pectoral muscles, feeling like charlie horses. I just have to breathe through it and try to stretch my arm out to stop the cramping. I'm hoping this goes away as my body gets used to having plastic things under my muscle, but we'll see. Maybe I'll just have to ask for more valium from my plastic surgeon.

Emotionally it's been a lot harder. For some reason I've been able to keep my shit together pretty well for the last months, despite having gone through menopause (haven't had a period since April but stopped the shots that force that on 8/3... maybe I'll get it back, maybe I won't), despite being exhausted from chemo and stuck in a tiny apartment for almost 6 months, I have kept my shit together. Lately not so well. I think I just stacked two more major things on top of everything, so now, being bald, getting my boobs cut off and being dumped 5 days before my surgery was just all too much for me. I cry every day. I've never been that big of a crier, but for some reason, I just can't hold it in anymore. I look in the mirror and although I know I love myself, I haven't been able to do any of the things I love, I don't recognize myself with my lack of hair and boobs, and being dumped with that kind of timing really took a toll on my self esteem. It took away a major source of comfort and knowing I was loved at a time when I really needed it. Of course I get a lot of comfort from my friends and family, but knowing your man loves you is a different kind of comfort, and having that taken away at a time when so many changes are happening to me physically and emotionally is very hard. I know that beauty comes from within but I just feel a really really constant deep sadness and loss. For my body, for my relationship, and just for the future life I thought I was going to live. I know I will come around and already am at times excited about the possibilities ahead of me, but right now a lot of the time, I am mostly sad for my all my losses.

All that said, a lot of you have been asking for updates on how my hair is looking - it is growing back a little now, and as Sandra (Anthony's daughter) said last time I showed her my blog "it's all words!" (with distain). So, making sure to have some fun pics this time:



















And at least our late summer has finally arrived in San Francisco, so spent the day at the park with mom and friend Marielle on Saturday, us at Chrissy Field (and me still bandaged but with the wonders of a padded push up bra creating some illusions):

And last but not least, some comic relief because I sure could use some in my life right now - we went to the bathroom near the park at Grace Cathedral on the top of Nob Hill yesterday and these signs were on the exit doors - does anyone know which door we should use?? :)

















Love,
Amy

Pathology Results from Surgery: Great News

Hi All,

So we knew the tumor had shrunk from my chemo, just from feeling it get smaller along the way. We knew the initial look at the lymph node during surgery was cancer free (but that was just an initial look, not final results). AND we knew that during surgery, they would be removing all the cancerous tissue so that after surgery I would be cancer free. We hoped that there would also be good margins around the area that had cancerous tissue so that the doctors felt comfortable about saying we didn't need to do any more treatment (ie. if it was too close to the chest wall, I might still have had to do radiation).

Let me share the email I got from my surgeon this morning:

"Hello, Wonderful news! You had a complete pathologic response to chemotherapy. No invasive cancer left. The lymph node is also free of disease. We should have a finalized pathology report by the end of this week. I will email it to you. CONGRATULATIONS!!!!!!"

Translation: My chemotherapy did such a good job that they found NO cancer in the tissue they removed from my breasts. Not only did they get good margins on what they removed, they found zero cancer since my body reacted so well to the chemo. This almost never happens (as my oncologist told me a while back). Also, lymph nodes definitely clear.

This is wonderful news and now we can really celebrate. Not only did I get rid of it, but we KICKED its ass. Majorly.

Yay!
Amy

The Whole Story

Hi Team,

So, been quite the eventful past week. Had my surgery last Wednesday and as Monika gave in the quick update, everything went really well. However, not without a little drama, so let me tell you the story!

I was supposed to be there at 9:30am for my 11:45am surgery... at 12 noon I was still waiting in the pre-op cattle call area, but at least they had given me a warm-air blowing gown and shoved a small TV in front of my face. ("here look at this while we make you wait"). Finally they took me into the surgery area, gave me a little versed, the drug they give you for conscious sedation. I felt it surge right through my body and make me totally relaxed, whether I was ready for it or not. It was great, they could definitely have a market for that on the street. Then on to the operating room and after not long, I was out like a light. They didn't make me count down or anything, they just started going around the operating room introducing themselves, and had me breathe some oxygen and I don't remember them actually getting all the way around the room with the introductions.

Next thing I knew, it was 7pm on the clock and I was in the recovery room. They almost immediately put me on a morphine drip since I had a lot of pain right away. I had my whole chest wrapped super-tight with gauze and an ace bandage. I had a bulb of local anesthetic (lidocane I think) with tubes going under my ace bandage that constantly bathed my cuts in a local anesthetic. I also had a cut on my side from my lymph node biopsy, which was not getting any local anesthetic, so was causing quite a lot of pain. Also, I had two drainage tubes going under my skin into the empty areas that used to be my breasts draining out the fluid that your body creates when tissue is removed. Quite a tangle of different tubes and drains and areas that were hurting and the wrap around my chest making me feel at times like I was being suffocated.

Mom and my friend Corey kept me company, feeding me ice chips and making sure they yelled at the nurses for anything I needed. At about 10pm, the nurses notified me that the hospital was at capacity and it looked like I would not be getting a room that night. Now, the recovery room that I was currenly in was constant chaos. People were coming in and out, yelling at each other, lots of nurses since I believe it has to be at least 2 to 1 (nurses to patients), lots of general noise and light. I cried when I found out I would not be getting any peace and quiet - I was tired, frustrated, in pain, and just told that I wouldn't be getting any more comfortable until at least the next day. To boot, it seemed that they were having a staffing problem because the nurses seemed to be extremely pissed off that they had been asked to stay overnight as well.

The next morning, after a pretty constant pushing the button for morphine all night, I got to have a long talk with the manager of that area of the hospital, of course him kissing my butt as much as he possibly could so he didn't have a lawsuit on his hands. I think he was surprised that although I was firm and angry and told him my situation was simply not acceptable, I really did spend a while trying to get to the root of the problem with him and asking him how I could use my voice to enable him to create a solution so this doesn't happen again. I will follow up on that after I'm feeling a little better, but he seemed to be relieved that I didn't threaten to sue. Not long after that, I got up in a room and slept off my pain and drugs pretty much the rest of the day and night.

Dr. Langer came in to visit me on Thurs. morning and told me that the surgery went really well, she did not have to make very big incisions to remove all my breast tissue, so she thinks eventually, the reconstruction results will look really good. She said they didn't see any signs of cancer in their initial dissection of my sintenal lymph node during surgery, but of course the final results of that will come in my pathology report (still waiting on that but should be a few more days). The final pathology report will also give us the important peice of information of how much tissue they found still with cancer in it - it's possible that the chemo got rid of all the cancerous tissue, or that there still was cancer, but the important thing is that they have healthy margins around all the tissue they find that was cancerous. I will be sure to give an update on that information once we get it. They did place tissue expanders under my pectoral muscles, but weren't able to expand them much since my muscles and skin were so tight already. It will take time and many sessions of expansion to get my implants back up to where we want them to be. As I told my friend Danielle, it's like those "pump it up" shoes back in the 80's. So overall, surgery went really well even though the hospital situation was a nightmare.

Today I had my follow up appointment with Dr. Langer and she just had the biggest grin on her face the whole time. She said I am already healing so quickly and well she is just thrilled. The drainage tubes out of my sides came out already today, when originally they had told me 2-3 weeks. This means I can start trying to stretch my arms and get back some of my range of motion - but not too much! Don't want to re-open any scabs that are trying to heal up. I am still not supposed to lift anything over 5lbs or drive for a while. I got to have my first look under my ace bandage today too. It was the weirdest thing. My chest almost looks concave, with two long scars where I used to have nipples. It's very shocking. But, I will have breasts again, it will just take a lot of time and patience.

I can't help but feel mutilated and scared - scared of what people see when they look at me, and just scared of not being self-confident, even though I've pretty much always been pretty self-confident. For example, one of my anesthesiologists in the hospital was tall, handsome, dark hair, blue eyes, no ring... and I talked a little to him, but as he was walking away, I actually thought... I need to wait a while on this flirting thing, who wants to flirt with a bald cancer patient who just got her boobs cut off. He probably just feels sorry for me. I know it's self depricating, but I am just going to have to start working on this with myself and my friends, being dumped 5 days before my surgery certainly didn't help. But I do have faith that I just have to be patient with myself and it will come back, let's call this my 2nd puberty. And this time I am going to get a therapist to help me.

Next appointment is next Tuesday, I have my first follow up appointment with my plastic surgeon and I think we will talk more about next steps then too.

Thanks to everyone for all your love, thoughts, prayers and positive energy for a successful surgery - it worked! Now more of the same for a quick and successful healing of my wounds (both physical and self-image wise).

Love,
Amy

Surgery Update

Happy to report that Amy is out of surgery, awake but very very tired, on a morphine drip, and hopefully going home tomorrow. Lymph node pathology is clear - miss Amy is cancer free!!!!

Surgery Tomorrow

Hi All,

Had a rough weekend and last couple of days trying to mentally preparing for surgery. Got back from my latest adventure to Portland last Thursday, and last Friday, Anthony and I broke up. Not going to go into a whole lot of detail on this other than to say it has caused me a whole lot of sadness and just overall disappointment and a feeling of great loss. I am trying my best to focus all my mental energy on being positive and healing for my body, but it's a great challenge right now.

Tomorrow I'm having a bilateral (both sides) mastectomy with tissue expanders. This means they will go in and take out both of my breasts, and put temporary implants behind my pectoral muscles, which will be pumped up over time as implants. Eventually, 6-9mos from now, I will have another surgery to have the final permanent implants put in. My surgery starts at 11:45am tomorrow morning and I'm supposed to go the hospital at 9:30am. They always make you take all your clothes off and put on this thin gown, then wait for a really long time in a freezing cold room. I'm bringing a jacket. The surgery should be about 4 hours long, and I will be in the hospital for one night. They will also be doing a lymph node biopsy to make sure that the cancer has not spread to my lymph nodes, but the expectation is that it has not. We'll know for sure tomorrow, and the final pathology report comes back a week from tomorrow, telling us how much cancer they found and if they got good, clean margins around the tissue they remove.

I'm nervous. I've never been under general anesthesia and I'm a little afraid of where my mind will take me since I haven't been the most stable person mentally lately. But, I'm hoping regardless of where it goes, I will not remember it... that's the hope anyway.

Thank you for all your love and prayers tomorrow.

Best,
Amy

Post-chemo Adventures

Hi Friends,

Once the mental chemo fog wore off and the physical exhaustion lessened, I was able to go on a few adventures in between my last chemo treatment and TOMORROW, my double mastectomy surgery. First, I had my Ta-ta to the Tata's party on Aug. 21st. It was so nice to see so many of you, play pin the boobies on the babe and eat boobie cupcakes. Sharing a few pics -

On Wed. Aug 25th, headed down to Orange County to visit Anthony and family, and went down to Rosarito Mexico for the weekend. I almost didn't make it to Mexico because I got sick with a fever, spent a night in the Irvine Kaiser Hospital. I was super pissed to be in a hospital again, and right after I thought I was done with the tiredness, sickness and pain - I was ready to have fun! But thanks to an atom bomb of IV antibiotics and a sympathetic doctor, I was released in one day and given the OK to head down to Mexico! We had some of the best food and great times with friends and family. We also went to an Argentinean Tango melonga (sp?) and I got to dance with one of the teachers! It was so much fun!!

Then, back in San Francisco on Aug 30th, Mom, Dad and I drove up to Napa on Sept. 1st to bask in the sun and drink delicious wine. Our friend Karen lent us her guest house and we sat by the pool, entertaining her 2 dogs and eating some of the fresh veggies from the garden.

Came back to SF on 3rd, and decided that since I still had a bit of time and could fly for free with Anthony, to go spend Sept. 5-9th in Portland, OR just to explore and have fun. In Portland, Anthony and I rented a car to go out and tour the Columbia River Gorge, drove out from Portland to highway 84 to see the beautiful Gorge, see waterfalls and do a few hikes. We also tried out a few of the local brews - Portland is the micro-brewery captial of the US. My favorite was the blueberry ale that I had, smelled and tasted like a blueberry muffin. The weather was cool and rainy, but our hotel had a hot tub and indoor pool. One of my favorite things was the culture of street food in Portland, whole blocks of street food vendors, lots of different kinds. I tried a Korean Bulgogi Taco. We also tried the famous (from Man vs. Food) voodoo donuts, which I was excited to see had many vegan donut options. Anthony's favorite was the maple bacon bar. That's right, bacon. Portland was a great town.

I had a really great time with all my adventures and feel really lucky to have had the time and people to adventure with. That said, my adventure time is up and tomorrow is the surgery. More on that next post ~~

Best,

Amy