Good Week and Plastic Surgeon Debrief

Hi All,

I wrote this last Friday, and just realized, signing back in to post again, that I never actually posted it! Amazing... anyway, for a two-post day, here is part 1... written last Friday.

This past week has been really nice, energy levels up and spent most of the week just relaxing and hanging out with friends from time to time. Only crappy thing is it seems that I've come down with a head cold over the last day or so - no fever, which is good (any fever of 101 and I have to go to the ER) but just runny nose, suffy sinuses, etc. I'm really hoping it clears up by Monday, because my LAST chemo is scheduled for Tuesday and I have a feeling that they will not do chemo for me if I have a cold. I want to be done though!!

This morning I had my first meeting with my plastic surgeon - Mom and I went in with a big long list of questions, most of which were answered with "I don't know that yet" or "They will tell you that with your pre-op instructions." He seemed to think I was making good decisions with my decision to take both breasts, and he did say that patients who are doing bilateral (both sides) and are small breasted to start out with usually get the best results... so that's a good thing for me. He also seemed to think it was a good decision to go with the tissue expanders and implants rather than trying to move tissue from the tummy (TRAM flap) surgery for many reasons - mostly that the surgery and recovery is a lot easier with implants, and if anything goes wrong you can take them out and start over. I signed a consent form for a bi-lateral mastectomy with tissue expanders. It felt kind of weird and final to sign that form, but I did feel a sense of relief and happiness that we're moving further in the direction of being done with this!!

If any of you want to learn more about the surgery I'll be doing, there is a really good video on You Tube that shows a woman's journey that is doing the same surgery - warning, you will see her scars and reconstruction and it's a little jarring if you're not ready for it, but I think she does a good job of showing realistically what it's like.

Part One (her showing scars 3 weeks after surgery)
Part Two (3 months post surgery)
Courage is my Strength YouTube Channel (other videos about her surgery)

Thank you guys for all your ongoing support - I cannot wait for this leg of the journey to be over, and hopefully it will be done soon.

Love,
Amy

Surgery Debrief

Hi Team,

I had a long and educational appointment with my breast surgeon yesterday, lots of stuff reviewed and a few big decisions made. First, it looks like in order to coordinate schedules with my breast surgeon (who will do the mastectomy) and the plastic surgeon (who will do the reconstruction), we will need to move my surgery date out to 9/15 - still tentative, we'll know for sure in the next week or so once the PS (plastic surgeon) confirms. On that note, I have my first appointment scheduled with my plastic surgeon for next Friday, a week from today - here's his website: Dr. Roderick Simonds

The big decision making I did in the appointment yesterday was between doing a bilateral (both breasts) or unilateral (only one side) mastectomy. I decided to do both, and here's why: Although I tested negative for the BRCA genes, there are a lot of genes out there that are unmapped and because of my age it is more likely that my breast cancer is genetic. If it wasn't genetic, there was only a .5% chance of me getting breast cancer, which while it still exists - isn't likely. It is more likely at my age that it is genetic, and we just don't know the gene yet. So this is one assumption that we are making to base the decision on. IF we treat this as a genetic cancer, my likelihood for recurrence is around 60%. Taking both breasts instead of just the one decreases my risk by 95%. So that is to say, my risk of recurrence goes from 60% down to just 2-3%. So I choose to definitely do both. Now there still is the option for me to do one now, and wait to do the other one until after I have kids so that I could breastfeed. In the mean time we would just monitor the other breast with MRI's and mammograms every 6 months (each one once a year so the alternate every 6 mos). I am choosing not to wait on it for a couple of reasons - first, I don't feel strongly about breast feeding - I think it's possible to have a healthy child, strong bond, and well adjusted all without breast feeding. I feel more strongly that I don't want to have to go through this process again. Also, I had my last obgyn appointment last October where I got a breast exam and we did not catch the cancer, so this past one developed in less than 6 mos. Now, granted that was not an MRI or Mammogram this past time, so we may catch it sooner. Thirdly, if I do the surgery on both sides now and just get it over with, I will not have to go through the whole process twice and the symmetry will be slightly better doing it all at once. Last but not least, I know I am this type of person - now that I have caught one cancer myself, I will probably freak out at every little tissue thickness I feel, leaving myself wondering if it is going to develop into cancer. Needless to say, there are a lot of factors and it's a big decision. It was probably one of the harder ones, as everything else seemed to have a strong recommendation one way or another and this was really just - what is most comfortable to me, and what are my priorities in life. Tricky. I do feel good about my decision though.

The other thing we reviewed is a lot of just exactly what will the surgery entail. So here it goes: They will remove all of my breast tissue including the nipples by cutting a circle around the nipple and removing it through that hole. They will also cut a small incision under my arm to remove at least one lymph node. During surgery, they will send that lymph node down to the lab to be cut open and looked at under a microscope, and if they do not find cancer, they will not remove any more lymph nodes and close that cut back up. If they do see cancer in that lymph node, then they will remove more lymph nodes to see how far it has spread. They don't anticipate finding cancer in the lymph nodes, but we will have to wait and see. If they do find cancer in the lymph nodes, then I will most likely have to do radiation as well. If they don't, then I probably won't have to do radiation. Then, after breast tissue and lymph node biopsy is done, the plastic surgeon will take over and put empty (or a small amount of saline, not sure yet) implants behind my smaller pectoral muscle - they cannot put implants just between skin and the world as there is just not enough protection with no breast tissue there to cover it. The initial implants are temporary Tissue Expanders (TEs) that will be pumped up to the size of my final implant to stretch the pectoral muscle and skin up to the size of my new breasts. This whole process of reconstruction will have more detail next week after meeting with the PS. Initially, my skin will look fairly loose and empty and over time these tissue expanders will be pumped up then eventually (usually 6-9mos) I will have another surgery to exchange them for permanent silicone implants. When I go home from my surgery in September, I will have a pain pump for the first three days that will have tubes under my skin and around my new breasts that administers a local anesthetic every so often. That will get taken out after 3 days. I will also have a tube with a little bulb at the end coming out of my side on either side that is for fluid drainage, since I will have fairly empty skin at first, the body tends to fill it with fluid that would just sit there and not be absorbed. So for about the first 2-3 weeks depending on how quickly my body stops making this fluid, I will have these tubes coming out of my sides and draining the fluids into little sacs, which I will have to discreetly hide in my clothing or clip to my waist - and I will have to empty and measure this fluid to see how I am progressing. After 2-3 weeks, my body will hopefully be making less fluids, and I will be able to get those tubes out. I will go home w/ the whole area wrapped in bandages and I will come in to get those bandages changed every so often, so I will not be able to get the area wet for a while, and will have limited ability to raise my arms, etc .

That's pretty much the synopsis of the surgery - I will get more detail on what I can and can't do post-op exercise and movement wise, and a more final surgery date (and therefore date I can go back to work also) once I meet with the plastic surgeon next Friday.

I laid in bed last night trying to fall asleep and found myself feeling really anxious. For a little bit I laid there and thought 'Am I making the wrong decision? Is that why I feel anxious?' And I tried to put myself in the position of only taking one breast instead of two and see if that lowers my anxiety level, and it really didn't. I realized that I do think I'm making the right decision, I'm sure that based on all the information I have and what I prioritize in my life (not having to do all this over again if at all possible, and breast feeding secondary and just not as important to me), I am doing the right thing. I am just anxious over the whole process. It's a lot to swallow and it's going to be very different, painful, and visible to the outside world. I won't have any feeling in my breast area anymore, and I'll have incision marks on my skin and no nipples. I can eventually tattoo or get nipple reconstruction if I want, but that's a whole other process after all this. I know I will be fine, as life goes, you just have to take everything one day at a time, but looking at it all in my future does seem a bit overwhelming at times. Of course, so did chemo and I'm almost done with that now! But the less comforting thing about that, was that chemo was/is every bit as hard as I expected it to be and then some. So that just leaves me with the conclusion of just diving in, getting it over with and coming out on the other side happier, healthier and with "more character." :)

Love,

Amy

The Classics

Hi Team,

Mostly been hanging out at home the past few days, catching up on some classic movies and reading my books. The classics I've checked off the list so far are Gone with the Wind, All about Eve and East of Eden. I loved Gone with the Wind, so far the other two were just B+ for me, and am queueing up Casablanca next on Netflix. Just one of those things where I feel like I should watch (or read) these at some point in my life, and what better time than now!

Mom wanted to make sure I shared a funny story with you guys - day before yesterday I was walking up the street close to home and this older asian man stopped in my path and bowed his head and put his hands in prayer. Now of course this is very sweet of him, but having come back from my trip to Thailand last April, what immediately came out of my mouth was (to mom) "Does he think I'm a monk?" A guy sitting to the side at a sidewalk cafe table busted out laughing at our whole interaction. I have to say I have some very interesting interactions when I openly sport my bald head around town.

Mom has also been pointing out that I do have some hair growing back in mostly on the top of my head, but to me it looks a little like the movie posters that are all over town for "Despicable Me":

Also thought I'd share a few other pics from recent events - Me, Sandra and Anthony at Chrissy Field during Sandra's stay and my most recent visit to my oncologist, Dr. Liu.

Love,

Amy

#5 Today and counting down

Hi Team,

Today was chemo #5 of 6... and I cannot wait to be done with this. Last week I did an echo-cardiogram since I had the weird dizzy spell this past time around, and herceptin (one of the drugs I am taking) is known to have a negative effect on the heart. Well, good news - my echo showed normal heart function on all accounts, and the dr. had previously done an EKG as well, also normal. So he said the heart is looking good and we can continue as we were with the chemo.

Even better news, the oncologist does a tactile exam of my breast where the tumor was each time I come in - when I first came in to see him, my tumor measured 5cm by 4cm. The last time I went, he deemed it "unmeasurable" because it had almost entirely gone away. This time, he said he thinks it was even more soft and he thinks we are continuing to get a great response. Of course our first question is, if I don't have a tumor anymore do I have to keep doing chemo? And of course the answer is yes - just because we can't feel anything doesn't mean it's not there, and he wants us to finish all 6 rounds before going into surgery. His hope is that we might possibly be able to get a complete response to the chemotherapy - that is very rare, and means that when they remove the tissue and lymph nodes during my surger, MAYBE they will not find any cancer in the tissue. Maybe. :) Either way the progress is great and although the treatment is grueling and really sucks, I am so thankful that I am getting a reward and some success from treatment.

This past weekend was nice, went into work on Friday for the first time since taking leave. I had a nice lunch of dim sum with a bunch of friends, then spent some time making the rounds around the office saying hi and chatting with everyone. It was a nice reminder that even though when I'm at work, I get caught up in the daily business and craziness of retail, I actually do really enjoy the people I work with and am really fortunate to have a lot of genuine, good people at work.

Saturday we went shopping with a good friend from Kona, Diane and her daughter Emma - it was fun to get out and walk around the mall a bit, trying to get a little more exercise, and what better exercise than shopping! Of course, I had to rest and have some tea after a little bit, but it was nice to get out a little more.

Overall I had a nice last week before my chemo, but I have a hard time going into these Tuesday infusions, I have been getting used to being more active, then I have to restart it all over again. I just can't wait until I can just be more active and not have to get beat down by the chemo meds again. Anyway, today's infusion went fine - I usually feel ok as long as I take my nausea meds according to schedule. For today and tomorrow I am still on a steroid and feeling ok, but after that the soreness starts to set in for the next week and a half or so. I guess at least I know what to expect, but on the other hand knowing what to expect certainly doesn't help much. Only two more times and counting... !!

Love,
Amy

Hi Team, Weekly Update

Hi Team,

It's been a while since I was on here, partially because I've been busy and partially because I just didn't have much exciting news to report. I've been on the upswing of my chemo symptoms, seems like the soreness lasts about 1.5-2 weeks, started wearing off last Friday for this time around. Last few times it felt like there was a specific day where the 'fog' just lifted and I felt lighter, but this time it was a lot more gradual. I was starting to feel better on Thurs/Friday but every once in a while would get a sharp shooting pain or cramp in my muscles. I guess nothing major that I can't handle, but I like it better when it's just gone entirely, I'm that demanding. :)

Fourth of July weekend was nice, didn't too too much exciting as I've still been pretty tired, but we did have a nice bonfire on ocean beach with a few friends. I forget how delicious smores are. Of course now I have a hard time burning the marshmallows to a crisp since that black stuff after you burn something is a carcinogen, which is directly linked with cell mutations and altering DNA, and therefore linked to cancer-causing mutations. But... with limited burned marshmallows, smores are still delicious.

Monday Anthony and his daughter Sandra came up to San Francisco (from Huntington Beach, where they live) for her 10th bday. We had a fun get together on Monday night at my apartment, and I'll share a few pics w/ you all. Yesterday my downstair neighbor said, was everything ok? I heard a really loud thud the other night - I said, oh yes we were playing twister for Sandra's bday. We also had a nice day at the park on Tuesday despite the gloomy SF weather.

Now that I'm feeling better, I feel like I can really say... 4 down, only 2 more to go! Of course once I get closer to my next chemo (next Tues) I will probably feel more like saying 'this sucks, I don't want to do it 2 more times,' but at least it is really only 2 more times now.

I also decided to have a party/get together after my last chemo before my mastectomy. I found a good idea off the 'Young Survival Coalition' bulliten boards, to have a "Ta-ta to the Tatas" party. So, for anyone that's in the SF area, Saturday Aug. 21st, join us at Lush Lounge on Polk and Sutter around 8pm. It will be their normal cash-only bar, but mom and I will bring some snacks since they don't serve food. All are welcome, as long as you're over 21 of course! You can rub my bald head before my hair starts growing back in (can't wait for that!) and help me say bye-bye to my boobies. In all truth, I'm not sure if I'm just taking one or both yet, but either way, a good excuse for a party.

Love,

Amy

Matching Haircuts

Hi Team,


As promised I said I would post some pics of Anthony and my matching haircuts - we went to Chrissy Field almost all day on Tuesday. We took a lunch picnic, some books and some music and laid on our blankets almost all afternoon. I asked a random guy to take our picture and its not the best pic, but the only one I have of us w/ matching hair for now.




Love,
Amy

Must be the Chemotherapy

Hi Team,

This has been an eventful week. Had my chemo a week ago Tuesday so I'm officially almost to my "nadir" or low point of the cycle. That is when my immune system is at it's weakest, the chemo has cycled through my blood stream and the body is killing off all those cancer cells, and just about any other cells that might get in the way. I have definitely been feeling it in a big way this time, but I have to keep reminding myself that is the feeling of the cancer shrinking, and the great part is that I know it's shrinking! I have also had what I have determined as success in keeping active this time around, every day so far after chemo I have walked at least 1.5-2 miles every day. Granted I walk very slowly since I get out of breath just climbing the stairs to my apartment right now, but I do think being active has helped me keep the momentum going and enjoy my days more.

Dad left last Friday early in the morning, and Mom moved back into my little apartment. There is certainly nothing like having your mom take care of you. Our next project, however, once I'm not feeling so sore is going to be to go through all my stuff and donate as much as possible. We've already taken a few bags of clothes to goodwill, but there is nothing like being in your apartment all the time with other people there all the time to make you feel like you have too much STUFF. Way too much!

Saturday Anthony decided to do his own fundraiser for me down in Orange County. He got all our friends down there to chip in for him to wax his chest and back and shave his head! He had a friend get all the supplies and do it in their back yard, and I got to skype in and watch the whole 2 and a half hour ordeal. It was awesome of him to do that for me, I know he's never felt the pain of waxing (welcome to just a taste of what women do for you men!) and it had to be traumatic for that to be his first time. I was really impressed and appreciative once again at the generosity of all our friends to chip in to help me out with my medical expenses too. He actually looks really nice with a shaved head, I don't have a picture yet but will post one of us with our matching haircuts soon.

Yesterday I had got a bit of a scare - got two dizzy spells in the morning where I started feeling dizzy, losing my vision and felt sure I was going to black out, so I laid down on the floor and just tried to breath. Luckily, I did not end up passing out, but as I was resting my blood pressure was down as low as 105/52 where it is normally somewhat high (130's/80's). I was still feeling woozy and lightheaded 45 mins later, so we called the kaiser advice nurse to find out what to do. I really did not want to go to the ER again, but at the same time mom did not want me passing out on her watch. So we called, and of course anytime they hear "chemotherapy patient" they want you to come in immediately because they know you are high risk. Long story short they determined that I was dehydrated. Which is weird because I've been drinking 2-3 liters of water a day, plus little bits of fruit juice, sparking water, soup, etc. So I'm really not sure how exactly I got dehydrated, but they had me on a saline IV in the kaiser medical building for 4 hours yesterday before finally feeling ok to release me. I got another call this morning from the oncology nurse wanting me to possibly come in today to get another liter of water via IV but I convinced her that I was feeling normal and my BP was back to normal today, so unless I feel weird, I don't need to come in. It's just so weird doing everything you possibly can, and believe me, I'm a pretty diligent patient, and still getting dehydrated or just not being able to keep it under control.

So, we have a joke - because if you don't laugh you have to cry - when you have all of this whirling around you, trying to keep track of it all - you just can't explain why/how something happens sometimes, so we say "must be the chemotherapy." Ie. Wow, that was a weird stomach cramp. Huh, must be the chemotherapy. Also, how do you think you got dehydrated? Not sure, must be the chemotherapy.

Love,
Amy

Dad's Bday and Chemo #4

Hi Team,

Had a good weekend with my parents, had a nice Father's Day brunch with Dad, Mom and Monika at the Presidio Social Club - I've been there before and enjoyed the Tuna Salad Sandwich, but the crab cake sliders were just ok this weekend. I think they have more artisan cocktails on their menu than actual food items, and since I am trying to let my body heal and taking antibiotics, I didn't opt for any of those. Dad did have a tasty bloody mary though!

Dad and Mom are staying at the Mariott down on Union Square, thanks to cousin Scott for helping us arrange such a nice room. I thought I'd include a pic of Dad and me in the club room with our matching haircuts.

Monday night we rallied a crew to go salsa dancing at Cafe Cocomo - they have a pretty extensive beginners lesson on Monday nights, followed by DJ salsa music. It was so much fun! I have to admit I had my doubts... I debated premiering my blonde wig for the crowd there, but honestly, I get kind of hot and sweaty when I'm dancing and it just didn't sound comfortable, so I went bald. I was very interested to see how it went being a bald woman in that kind of crowd, I am used to lots of guys asking me to dance, but I didn't think that would be the case with me being bald, but they still did! I was amazed. And of course I got to dance w/ my dad and Anthony too. It was the most fun I've had in a while, and a good workout while we're at it! Going to try to work in more of those kind of nights hopefully.

Yesterday was chemo #4. I have to say this time it was a lot harder for me to muster up the mental energy to do this one. I know I am halfway done, and it could be a lot worse, maybe it was the juxtaposition of such a fun night on Monday - I want to keep having fun and not feeling like shit! Had a mini-breakdown last night just sheer not wanting to do it again, and again, etc. Physically hard, yes, but also very mentally challenging to stay positive! All of you have been wonderful for support, and I really appreciate it, but just the sheer lack of control over my life right now is very hard to cope with. Got some good suggestions from co-cancer fighters and survivors Kenji and Dana, going to try to work my way up to more activity and exercise this time. Physically may be difficult this time, but I think the mental benefit of exercising will prove to be worth it, and hopefully will help lessen the physical symptoms too.

Today's Dad's birthday, we are just planning on hanging out at the house, watching some movies (maybe going on a walk?) and going for Thai food for dinner.

Love,

Amy

A Fine Balance

Hi Team,

This week has been nice having dad around, he has worked on a few "fix it" projects for me - I forget how nice it is to have someone around that knows how to fix stuff. It is much more economical than just throwing things away and replacing them, as I usually do. He also brought along with him a hard drive of hundreds of legally downloaded movies (of course!) which has been fun to peruse through.

This week I had my oncology appointment on Thursday - just the regular checkup before my next chemo. My port site is still not fully healed and was looking a little inflamed with some gross yellow guck on the scab, and sore to the touch, so he gave me a pretty strong oral antibiotic to try to knock out the infection before it gets me really sick. Luckily I'm on the upswing of my immune system ability, so hopefully I will knock this one out before my next chemo and not have to worry about any escalation. He also had me do an EKG to just make sure everything is normal since I did feel a few irregular palpatations this past time around, and with my dad's family's history of heart disease, it's a little concerning. EKG looked normal, as it normally would unless you happened to do the EKG in the middle of an irregular beat, so we will probably just monitor that one this time around and hope it doesn't get any worse. My heart function was pretty good at the beginning of this whole deal, but my blood pressure has been up, and of course my immune system was good before this thing, and the chemo wiped that out totally... such a fine balance of everything!

It's amazing to me how reactive the human body is to everything, it makes me realize how little we pay attention to what we put in our bodies normally. I have started looking at the ingredients on my body soap, deodarant, lotion, etc etc. Probably to an unhealthy level, but seriously - if you put something on your skin or in your mouth on a regular basis, all those chemicals are going right into your body! I'm not going to go without deodarant or anything dramatic like that, but it definitely makes me think a little harder about what I put in my body. Some of my choices are to get as much of my protein and fat from plant based foods (although I do eat meat still), choose as many non-genetically modified foods as possible, and meats that do not contain antibiotics. You would be surprised at how much of our meat is processed with antibiotics and even has dangerous chemicals added to keep e.coli from being developed during processing. I will get off my soap box now, and just highly recommend that everyone watch the movie Food Inc. scary/real stuff.

On a lighter note, Mom arrived today and we had a nice lunch at the Ferry Plaza Building. It was a bit cold today in San Francisco, starting to get windier - hopefully it dies off this week. My chemo has been shifted to Tuesday since I missed Monday when we had memorial day weekend, so it kind of feels like I have an extra day this time around.

I will leave you guys with a hilarious video my dad shared with me - a spoof on our friends over at BP. Can't seem to post the video embedded in the blog so click here to see "BP Spills Coffee."

Love,
Amy

Dad in Town and other fun updates

Hi Team,

Dad got into town yesterday! He will be here for a week and a half or so, for both Father's Day and his birthday. I'm glad he is finally able to take a breath and relax for a few days. The fundraiser was a huge success, thanks to all of you. There really is no way to thank everyone for all your hard work, donations, love and aloha. But I really do feel all the love from everyone. Thank you from the bottom of my heart. Here are the only photos I've gotten so far, one with all our friends eating lunch, and the other of mom and Sam Choy, our chef extraordinaire.

The weekend was good, I also had my friend Jean and her boyfriend Michael in town from Florida. We went to a baseball game and had a few delicious home-made dinners!

I've been having a really good week, as I had hoped since I'm in my last week of the cycle - chemo again on Monday. I still get really tired when walking around all day, but I have enough energy to do more than just one little thing each day. So at this point I think I am supposed to celebrate because I am officially halfway done with chemo. And I am happy with that but to be really honest, I can't believe I'm only halfway there. It seems like quite the long journey - I know, glass half full vs half empty but the glass can be half full of something you really don't want to drink, right? Anyway, maybe a little to far with that analogy.

I met with a genetics counselor on Monday, which was fairly interesting. She told me that the average woman under the age of 40 has only a 0.5% chance of getting 'circumstantial' breast cancer (vs. hereditary) whereas an under-40 woman has a 10-20% of getting breast cancer if you have an inherited breast cancer genetic mutation. I am getting the blood test done to see if I have that gene, but based on my family history (or lack thereof for breast/ovarian cancer) the likelihood is that it will come back negative. That said, she impressed upon me that there are only 2 genes mapped to breast cancer out of the 20's of thousands of genes that we have in our body as well as a limited amount of mutations mapped that they attribute to the development of breast cancer. So, to sum it up, even if my test comes back negative, statistically I should still treat this as a hereditary type of breast cancer in terms of how I screen myself and the precautions I take. I will also be participating in studies such as this one to help identify future genes and/or mutations we can find to help know more about where breast cancer originates from in the body.

Tomorrow I'll have my next consult with my oncologist and give them a bunch of blood to test my white blood cells, red blood cells, platelets, etc before my next chemo. Will keep you all posted.

Love,
Amy