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

Team Amy Upcoming Event

Hi Team,

Most of you may already know about this, but with it coming up tomorrow I wanted to put a little plug on here. My dad and family (and Aunty Peggy!) have done an amazing job putting together a fundraiser for me on the Big Island in Kona - it starts with a golf tournament, but also has a lunch and silent auction. Any donations will go into my "fighting cancer" fund to help pay for medical bills and other necessary bills while I am on disability and not at work. I have to say I've been so impressed at my dad for putting everything together, never having ever done a fundraiser before and even more impressed at the wonderful outpouring of support I've seen already not only from the community in Kona but from all over- Family as far away as NY and Boston, coworkers, friends, even friends as far away as Japan. It never fails to impress me how people come out of the woodwork that I have not seen or heard from in years and how much love and aloha everyone has. Thank you all so much.

Here are the details:

Date - Saturday, July 12th
Time - Golf is in the AM (presign ups only) but lunch and Silent Auction is 12pm-3pm
Location - Kona Country Club on Ali'i Drive
Other fun details -
Lunch will be made by Sam Choy
Some of the items up for auction (there are many, but just a few teasers): A hand painted portrait by Herb Kane, a Half-day Fishing Charter aboard Catchem 1 with captain Chuck Haupert, 2 (2-person) golf play at Mauna Kea Resort, 2 (2-person) Snorkel Cruises on the Fairwinds, a 32" necklace of freshwater pearls from Gordon the Jeweler, an 18ct gold double twist bracelet from Big Island Jewelers... I could go on and on, thank you everyone for your donations!!

More full details can be found at: http://www.konashiatsu.com/

I will post some pics of the event after it's done and thank you everyone I hope you have fun!!

To end on a fun note, I love drinking carrot juice and the other day I poured myself a big glass of it, put it on the table, then had to go to the bathroom. Upon coming out of the bathroom I found my cat Brutus on the table with his face in my glass. Funny thing was that I had also made a big bowl of pasta with meat sauce that was sitting on the table next to the carrot juice. No interest in the meat sauce I guess. I decided to test if he really liked it that much today:

Love,

Amy

City Hiking

Hi Team,

Been feeling a little better every day this week, today is not too bad at all - still some soreness but energy level is definitely starting to go up. I keep reminding myself, today is better than yesterday, and tomorrow will be the same (better than today).

Today I went on a "city hike" with Monika - we were discussing how we'd love to go hiking in some sort of natural setting, but of course that takes effort to get out of the city. But really with the hills in San Francisco, and I live in the middle of them, it's quite convinient to go city hiking. I love the summer days where it stays light out until 8pm too, and we've been having unseasonably warm and sunny days, so it make city hiking, even late in the afternoon quite enjoyable. The pic, although not taken by me, is the actual street I live on, if you look closely you can see a sign for "Cala" which is a grocery store that I live right across the street from.

I was also getting really excited today that I had slightly more energy and feel some semblance of normalcy, and had a short-lived mental debate about whether it was better to just feel average all the time, or to feel really low lows and really high highs. The thought was short lived because I realized that my "highs" right now are really the same as what I consider my normal "average" and I just don't appreciate them as much normally because I don't have the low lows. Eliminating the lows doesn't make it average all the time, it just makes me not appreciate my normal "high" level of energy. Hopefully I can hold on to that appreciation even after I'm done with chemo.

Love,

Amy

My Chief Complaint

Hi Team,

These past few days have been not so fun, just trying to keep medicating and be comfortable. This morning I'm not feeling nearly as sore, I'm hoping it's starting to wear off a little bit. The soreness would usually wear off toward the end of this week, but this time has definitely been more difficult than I was hoping. But still, staying out of the hospital so I can appreciate that.

So, funny thing - I've been having to do some paperwork for insurance, and one of the tasks was to gather all my medical records relating to this breast cancer and send them in, pathology report, etc. When I finally got the documents from Kaiser, the first page states "Patient Amy L Langenstein is a 28 year old female presents with a chief complaint of breast cancer."

How succinct. I do complain of my breast cancer, yes I suppose that would be considered my chief complaint when it comes to my health.

My friend Michelle left on Sunday *tear* and along with her the semi-sunny weather we'd been having. Not nearly warm enough to sit at Chrissy Field yesterday anyway. On Monday Anthony came in to visit, and he made me a delicious pasta dinner Monday night. Yesterday we mostly hung around the house watching old 80's movies. Apparently I have been missing out quite a lot on some cinematic masterpieces.

Also went to get my Lupron shot yesterday, it's a quick shot they give me in the butt that makes my whole body sore and ensures that my ovaries stay asleep for the duration of chemo. I call it my "menopause shot." Then last night we got Korean takeout and watched the Laker game. I do enjoy watching the NBA finals.

Love,
Amy

A Day at the Park

Hi Team,

I've been feeling pretty sore lately, yesterday the bone pain of the Neulasta shot kicked in, more so than it had in the past. It's weird, I told Michelle I feel like one of those old people that sit out on the porch saying "my bones are aching, must be a storm." But seriously, it sends shooting pains down your bones, it's the strangest unpleasant sensation.

Despite the soreness, we've been trying to get out of the apartment, San Francisco has been having some warm-ish nice weather, so we decided to go to Chrissy Field for a bit yesterday. Monika, Michelle and I packed up our fleeces and stopped at Safeway to get some picnicking sandwiches, watermelon and drinks. I also opted for one of my favorites - carrot juice, seriously it's is one of my favorite drinks, probably roots back to when I was a kid and that was one of my special treats I got!

Anyway, we spent about 3-4 hrs at the park just laying around in the sun until the fog rolled in over the water and made it a little too cold for me to stay there. Got back to the apartment and Monika made us a re-creation of leftovers into a wonderful chicken, pasta, veggie stir fry. We watched the movie "Postcards from the Edge" which is a Shirley McClain/Dennis Quaid/Meryl Streep movie supposedly based on Carrie Fisher's autobiography. It was ok, but a few of us fell asleep.

Today I woke up feeling not as sore, so going to try to go on a walk before any major soreness kicks in. I was telling Monika the other day that I can feel my body working harder just to fight the chemo, it feels like a physical weight on my body, and I remember both of the last two cycles later on when it breaks and it feels like a weight is lifted off. That day usually comes near the end of next week, but I can't wait!!

Love,
Amy

Guest blog appearance

Hello Team Amy!

This is Michelle, couch-surfer extraordinaire! You may also know me from some of Amy's vacation pictures. We've been friends since college--a very, very short time ago. ;)

Since I've been in town since Saturday, Amy has let me guest blog today, so I'll pick up where she left off. We went to chemo on Tuesday. It was pretty crowded since no one received chemo on Monday due to the holiday, but Amy asked politely for us to be moved into a bigger room to accommodate her chemo posse (Anthony, Kristina and myself. Monika joined us later). Fortunately, the nurse did move us to a more comfortable space. We hung out, reading and watching videos on our cell phones (technology today!). Afterwards, we headed to Amy's place and cooked up a storm.

Amy and Anthony went on a breakfast date in the morning, which was fun. She also went to the park with Kristina in the afternoon to bask in the sun. Eventually, they got too hot and came back to the apartment. We cooked pizza for dinner then watched some bad, but good TV (Toddlers with Tiaras and the Bachelorette).

On Thursday, I tried to get her hooked on True Blood, but to no avail. We'll try Burn Notice today (I watch and enjoy a lot of TV--probably too much). We also did some household chores (very exciting). We did go to yoga in the evening (just like in college), which was fun and to me, at least, challenging. Monika made spaghetti with a great meat and veggie sauce, which we followed with mango sorbet. We also watched Yes Man. It was much better than I thought it would be, so if you are in the mood for a cute romance with a couple of laughs and a couple of over the top moments, go for it!

Overall, Amy's been such a trooper this week as she has through the whole process. I know you all agree that she has been an inspiration. I also know that she is very grateful and appreciative to have such a wonderful and supportive team!

Take care,
Michelle

Memorial Day Weekend

Hi Team,

Memorial Day weekend was fantastic, I went to see Sex and the City 2 on Friday night, then just hung out with Michelle and Kristina most of the weekend. We went to a baseball game yesterday which was supposed to be a good game, but ended up with the giants getting their butts kicked. They were going against the best pitcher in the league anyway, so it was fun to watch. The stadium was definitely full and I haven't been to a baseball game since last October, so I really had a nice time.

Haven't sported my new blonde wig in public yet, waiting for a fun time where I'm going out to a bar or event to do it, although that hasn't been happening too often lately as I've been having an early bed time.

Today is Chemo #3... having mixed feelings about it this time around. Obviously not looking forward to feeling like shit again, but after this round I'll be halfway done with the chemo, and I am certainly looking forward to being done!

Love,

Amy