I win!

Hi Team,

Still in the hospital, but actually have enough energy and time awake to post on here now. Sooo... good news! Today my total white blood cell count was 2000 and my nutrophils were 580! That's right, I hit the major road block to me going home. V. exciting, as I have been really not enjoying spending the week in the hospital. I did have a temperature yesterday morning, but haven't had one since, and if I can just keep that up, I will break out of here tomorrow morning.

I will definitely try to get a port installed before my next chemo, this hospital ordeal with all the blood tests, cultures and iv's has left me with very few places left to draw blood that aren;'t already all stabbed and getting bruised. Also the oncologist on call at the hospital told me the next time I do chemotherapy I will also need to do Neupogen shots, probably for 7 days in a row. This will help increase my white blood cell count ahead of time and hopefully keep me out of the hospital next time. Lets cross our fingers!!

My biggest complaint with hospital-living is mostly that the "nutrition" they provide is clearly for sick-care and not for health care. It took me 3 days just to get them to actually give me meals with no dairy in them (I've been allergic to dairy for 4-5 years now) then they actually hooked up a phone in my room - the dietician says "I've been trying to call you" and I said "Yes I haven't had a phone." so I wont go through our whole conversation because it would be incredibly boring but I kid you not actual choices from the hosptial dietician included fried chicken, a hot dog, chocolate chip cookies and peanut butter and jelly on white bread. Seriously lacking some nutritional value. I did get the pb&j though.

Love you all,
Amy

Thursday Update

Amy's neutrophils are up to 165 (she needs 500 to get out), but she still had a fever today so it'll be a couple of more days at least.

I'm sure she'll have lots of fun stories to tell you about how lovely the food and ambiance has been during her stay.

No Flowers

Just a note - if you were thinking of it, don't send Amy any flowers. I got her some yesterday, and the doctor made her take them out of her room.

Looks like she might be in the hospital until Tuesday or so.

~Monika

How She Breaks Out

Monika again, with a quick update:

Amy is doing okay. She still has a fever, so they gave her some stronger antibiotics. Her neutrophils went down a little more yesterday, but her total white blood cell count went up a bit. Given her point in the chemo cycle, it isn't all that strange that the neutrophils were still going down a little.

So right now, we're waiting on two things to get her out of the hospital:

1. Neutrophils must be up to 500 (yesterday under 50)
2. No fever for 48 hours in a row (she had one last night still)

To get her port so that she can get her next chemo, neutrophils must be up to 1,000.

Mostly, she's just really tired. She's also still really sore, but they are giving her percocet every 4 hours, and yesterday they gave her a little morphine, which seemed to work pretty well, too.

Will update again as soon as we hear back on today's counts.

Monday Funday Indeed

Monika here, and this is a long one:

Last night I joined Amy, Anthony, and Lynn for dinner after Amy's acupuncture appointment. Amy was feeling extremely tired so she curled up on the couch while Anthony and I went to get Thai noodle soup for dinner. When we got back, Amy was in bed and Lynn was sterilizing the thermometer.

After a reading of 100.7, Amy removed her heating paid and went to bed for a bit to see if it came down. The rule of chemo is that if the temp goes up to 101, you go to the ER. We were hoping we could wait it out and avoid the magic number. A little while later, though, it was up to 101.7. We waited 20 more minutes, but when it only came down to 101.3, we got ready to head to the hospital.

We made a really good team, I think. Anthony went to bring the car around, Lynn had the thermometer readings memorized and grabbed all the necessary items like phones and medical info, and I got Amy bundled up in her chosen scarf, hat, gloves, and fuzzy socks.

At the ER Amy sat down near a guy who smelled strong of (and offered some) McD's french fries while Lynn got her all checked in. They saw us within 5 minutes and got her suited up with a face mask and all. She'll have to wear one any time she goes to the ER, just to avoid contact with any super sick patients. Then it was back out to the waiting room for a bit. We made a few inappropriate SARS jokes as other patients noticed the face mask, but they pulled us into a private room pretty quickly.

The doctor came in to say he'd need to do a blood test, some cultures, and a urine test, and then we'd have to wait for an hour and a half or so to get results. The wonderful nurse, Holly, reached Amy's vein with no trouble and little pain, and left a catheter in so they wouldn't have to keep poking her. They took more blood than I've ever seen come out of a single person. Something like 4 big culture vials and 2 normal blood test tubes. Crazy amounts.

We entertained Amy as best we could while she waited for results. Rubber gloves can be fun when filled with air. :) We were definitely the party room, breaking the 1 visitor rule and making up stories about what was going on with the other patients who were making odd moans around the ward.

After she told them she was feeling about a 7 out of 10 on the pain scale for her back and muscle aches, they also gave her 2 percocet. The pain meds started to kick in, and Amy was so excited to feel relaxed and not hurting for the first time in a few days. Taking her blood pressure on her left arm where they did the chemo IV still hurt her quite a bit, though.

The doctor finally came in to give us results, but it wasn't happy news for Amy, who was not loving the uncomfortable hospital bed. They needed to admit her because her white blood cell count was too low. The doctor explained it this way:
Amy should have about 12,000 white blood cells, and 40-70% of those should be neutrophils. Amy only had 700 white blood cells (NOT a typo), and 7% of those were neutrophils. That means she only had 49 neutrophils (compared to what she should have being in the range of 5,000-9,000).

Some good explanations online: chemocare.com, Mayo Clinic, Wikipedia

So she has to stay in the hospital until they get her cell counts back up, which will probably mean a couple of days. They are giving her antibiotics to fight any potential infections, and she's doing okay just resting right now. I'll make sure to post again when we have some more updates.

Monday Funday

Hi Team,

Happy Monday!

I had a nice weekend - the weather in San Francisco was just sunny and warm enough to make me jealous of all the people out all day at the park in their sun dresses and flip flops. I have paced myself pretty well now to realize that these days I have about 2 hours of sitting upright and maybe 5-10 blocks of walking in me per day. That's it, or else my back will get me back at the end of the day.

So, the question becomes each day, how would I like to spend my reserves?? On Saturday, I had Stacy and Addie over for a wonderful fish dinner. It was awesome catching up w/ the girls and having some delicious food (I repeat after my mom's mom, "gosh I'm a good cook!") :) Yesterday I decided to spend my reserves going to a coffee shop and reading, writing in my journal. I have always found journaling to be especially theraputic and it was as always yesterday. Today my energy has been spent already going out to breakfast date with my wonderful boyfriend and saving the last bits of it for my accupuncture appointment this afternoon.

I'm very much looking forward to the accupuncture, I'm hoping she has some secrets up her sleeve on how to get rid of this back pain. I do beleive in all things pressure points, be they with needles or hands, so I'm counting on this one to help out some.

Also had an email exchange with my Dr this morning - I LOVE how prompt the Kaiser dr's are at answering emails. This really has been true of all of them, but once again I was impressed this morning. I had emailed him last night looking into the possibility of installing a port on me for chemo. Basically this is a semi-permenant IV that they install on you (usually near your clavicle) to give chemo, take blood and anythign else that needs to be done intraveniously. That way, I don't have to get stuck with needles and have all this bruising, track marks and pain in my arms for the next year. Although I only have 6 chemo sessions, I will still have to go back every 3 weeks for a full year to get herceptin done intraveneously. One of my friends was telling me Saturday night that she has a friend that went through this, and one of her regrets was that she didn't get a port. Her veins are now so messed up from all the IV's that she has to get blood drawn through her pinky finger. So, trying to avoid that. Anyhow, Dr. Liu responded promptly at 9am encouraging me to get a port and said he would have his nurse call me to go over the procedure and start scheduling things. It is a small outpatient procedure, but don't have a whole lot of details yet.

Am going to start putting together a 'visitors' calendar since I have gotten inquiries from a few of you and want to make sure I don't overlap too many people since I do have limited energy to spend in 1 day, and mom will be staying on my couch for all but a few weeks during the whole process so I won't have much couch time available either. I do love visitors if you want to come see the beautiful city of SF!!

Love,
Amy

First week DOWN

Hi Team,

Ok so it's not a whole week yet but I'm counting this as my first week because I say so. I am still really really sore today, mom suggested it might be from my menopause symptoms but man my back is sore, who knows what its from! The nice nurse Anna from Dr. Liu's office called me to see how I was doing today~ when I told her I had gotten sharp pains down my arm from the IV site for the next few days, I had to go in to get that checked out as I guess that's not a normal symptom. They said everything is fine and it's just my vein getting irritated from the chemicals. I'm irritated too, ha! They gave me a few tips (drink water, use a heating pad) to avoid it, but it may just happen every time we'll see.

I have about gotten to the point now where I'm sick of talking about how I feel and am hoping that the Saturday (tomorrow) will be the turning point of when I start feeling more energetic.

My revelation for last night was that this is going to be a fun/challenging time of reflecting on my life and really seriously thinking about what it is that I want to do in life. As opposed to doing what is expected of me in life, which I have always done. There may be some overlap, but this is one of those experiences that bears the privelidge and weight of some serious introspection and freedom to act on it. Although it seems very unlucky to go through cancer and chemo at age 28, I do think that it's a very very fortunate thing to have the kind of experience that allows you to live life for what you WANT to live it at the age of 28 rather than in your 50's and you've already done all this stuff you didn't want to.

On that note I have also posted a pic from my trip to Japan in 2007, found it along the road, walking to my guest house in Kyoto for the night. Not sure if I originally took the pic because I liked the quote or was just so thrilled to have some english I could read :)



Love,

Amy

Learning my Limits

Hi Team,

Yesterday mom and I got out of the house to go pickup some veggies and got a 20 block walk in - some pictures of Lafayette Park in SF and me modeling my first hat that I bought at Target the other day (ok, try to imagine it with no hair... although I really don't want to, definitely haven't come to terms with that stage of the process yet).

Although it was wonderful to get out of the house and get some fresh air, I was knocked out at 9pm last night and couldn't get a good night's rest because I kept waking up so sore, felt like I'd been hit by a bus. I told mom that and she of course goes into the story about her good friend who actually WAS hit by a bus, but is thankfully doing well now.

I forgot to mention the other day that although I haven't gotten "official" results of the MRI yet, I did get a very nice email from my surgeon/Dr. Langer the other day saying that she had seen the results of the MRI, showing that the tumor is confined to the breast and "very treatable." Basically I'm taking this to mean that the initial signs of the MRI show that there is no lymph node involvement (although this won't be final until they actually do surgery) and no spreading.

Another good friend of mine asked me how this whole ordeal started, and I realize that this may be a good time for a nice PSA - do your breast self-exams! That is how this whole ordeal started~ maybe too much information, but for the sake of hopefully helping someone... I had switched my birth control last October from the pill to a non-hormonal IUD, and anytime you switch hormones, weird stuff can happen, so I didn't think much of it at first when I felt the smallish knot (around Jan/Feb). I went on a (wonderful!) 3 week trip to Asia with my friend Michelle and promised myself that if the lump was still there after a month or two, I would get it checked out. Not only was it still there, but it was definitely more pronounced, and that was the beginning of the story... so if you feel anything you think might be weird/abnormal, get it checked out! Don't debate over it or wait to do it!

Love,

Amy

Other Pics from Chemo Day

Hi Team,

Feeling a ok this morning, I think this week will be a lot about learning my limits on how much activity to do in a day. Got some pics that Monika took at my chemo session of me and Anthony and the view from the private room I had, thought I'd share with all of you.

Love,
Amy

The Day After

Hi Team,

Today was not too bad, woke up feeling just fine (yay steroids), put in some time catching up on my work emails in the morning. I have been getting into the habit of filling my 1.5 liter water bottle almost all the way to the top with water then putting about a cup of juice in to make it go down faster. That way I've been able to do about 2 and a half of the bottles a day - I've heard from a lot of people that hydration really helps - with all the different meds, chemo, lupron, steroids, anti-nausea meds, the kidneys have to work really hard to flush everything out of your system and I'm hoping to not put too much wear and tear too early in my life.

Even so, as today wore on, definitely got tired, really sore lower back and a big knot in the bottom of my stomach. One of my friends I was talking to asked me what I thought the knot in my stomach was from, but who knows with all the different meds I'm on!

We did make it to target today to stock up on cleaning supplies, soap and kitty litter - and I bought my first two hats. I haven't previously been a big hat girl, but I could see myself getting addicted. Like I say, just because I'm sick doesn't mean I can't look cute! :) Will do a fashion show for you guys later when I'm feeling more energetic. Am a little nervous about how the next few days will go as today's my last night taking the steroids, but we'll see.

I can't thank all of you enough for all the love and encouragement I keep getting from everyone. It really does help even if you don't hear back from me quickly, I really do appreciate all of it.

Love,
Amy

One down, 5 more to go!

Hi Team,

Today was my first chemo infusion - had a great nurse who administered it at Kaiser - Diane, gave me and my posee (Anthony, Mom, Monika) lots of information on possible side effects and the wonders of modern day anti-nausea medications. I got all the good stuff and plan to take it all as perscribed so I can hopefully avoid any of the nausea.

First was an IV of benadryl, just in case of allergic reaction - this one made me kind of tired and woozy feeling, not too bad though. Next was about an hour and half of herceptin, then 45 minutes of taxotere (aka docetaxel), then another half hour of carboplatin. A quick flush of the vein with saline water and we were done! No major immediate side effects of any of that, mostly just wooziness from the benadryl, and at the end for some reason the saline really stung as it was going in, but for the most part pretty smooth.

Am definitely feeling a little tired right now, going to try to hold out for a little while longer then get a nice full night of sleep. Still have one more day of steroids, and starting tonight zofran every 12 hours to avoid nausea. The lovely pharmacists in the oncology lab (that must be a fun job, lots of chemicals to mix there!) also gave me compazine and ativan for use against any breakthrough nausea (meaning if it breaks through the zofran). They said the ativan is a sleep aid and anti-nausea all in one, similar to a valium w/ nausea meds. Great stuff! Hopefully I won't need too much of it, but we'll see - so far so good, but just the first few hours, I'm sure this stuff will take a while to soak in.

Off to bed early tonight!

Love,

Amy

A Few of My Favorite Things

Hi Team,

This weekend has been fantastic. I decided to do a few of my favorite things since I may not have the energy to do them in the next 6 months or so (let's see how it affects me, but doesn't that sound like a good excuse to do some of your favorite things??) :)

*Pic to the left is at the Girard tasting room, beautiful spring tulips!!

Friday night was Salsa Dancing at Roccapulco in the Mission - I always love that b/c they have live bands and you can get drinks, but you don't hardly have any time to drink them because you're constantly dancing! Great workout too!

Saturday we did a wonderful day of wine tasting in Napa Valley. Special thanks to Polly, Nathan and Erin at Meadowood winery for being so wonderful to set everything up for us, make sure we felt extra special and tasted uber-tasty wine. We went to Girard (Yountville), Elizabeth Spencer and Quintessa (both Rutherford), all Napa Valley. The poor girl at Elizabeth Spencer who was pouring us wine (Sara, she was very nice) asked if there was any occasion we were celebrating and mom told her we were celebrating my last day before my breast cancer treatment. When I told her I start chemo on Monday, her face got all red and splotchy and I thought I was going to make her cry. It's so amazing to me how total strangers can feel so much for another human being, it is very encouraging. Elizabeth Spencer winery was so nice they sent me home with a complementary signed bottle of wine that I will use to celebrate after the chemo is done.

*Pic right and above for the SF Team Amy that went wine Tasting, to the left me and mom at Elizabeth Spencer Tasting room

Today Mom and I got massages, ate sushi (can't have anything raw on chemo) and got some groceries for future meals. Between all the whole grains, protein and fresh veggies, the fridge is full now and as I used to ask my mom when I saw that our fridge full when I was a little kid - 'are we rich, we have so much food!?"

Time to get ready to kick cancer's ass starting tomorrow, and bring my posse into the chemo room.

Love,

Amy

The New Plan

Hi Team,

Today did my MRI and 2nd Consult w/ Oncologist.

MRI was fine, I actually had gotten some Valium for it since it's a very small narrow coffin you are put in with loud banging noises for a half hour, but I forgot to take it in my rush to get out the door by 8am. I was fine though - the male nurse who couldn't even figure out how to put the gurney bed hand rails down had to stab me a few times on both arms to finally give me a successful IV (here why don't you let me do that) lol. Then they put me face down with my boobs hanging down through an opening, scrunched me in the tiny tube then played the loud banging noises for a while. Results on Tuesday, stay tuned.

Meeting with the oncologist was very positive. We walked into his exam room with a full entourage~ Mom, Monika, Anthony and myself. I really did feel lucky to have so many people really want to hear the details and be a part of the decision making. I actually really like Dr. Liu my oncologist also. He knows all the recent literature and gave me and my entourage a great lesson and some big decisions to make today. Come to find out, my tumor is HER2 positive, which means it's slightly more aggressive, but hasn't spread yet. Although more aggressive might not sound good, it also means they know exactly what chemical will treat it, and since it has not spread yet, it's good news, but changes the treatment slightly. Now instead of doing 8 treatments every 2 weeks (ACx4, Tx4), I will be doing 6 treatments every 3 weeks (TCHx4). I am actually very glad for this because 3 week cycles give your white blood cells much more time to rejuvenate from the chemicals, TCH chemicals are less dangerous to your fertility and MUCH less dangerous to your heart. The 'A' in AC is known to cause some long term damage to your heart. With my family's strong history of heart disease, I wanted to avoid that as much as possible.

So the logistics work like this now: I have to start a steroid on Sunday, taking 2 pills 2x/day for 3 days - before, day of and day after chemo. I will start the TCH infusion at 1:30 on Monday and it will take about 3hrs. At that appointment they will give me all sorts of fun nausea meds to take home. I plan to take them all exactly as prescribed and not wait to get any nausea before I take them. (hopefully!) I will go back every 3 weeks for 6 times to get the same treatment, each time meeting with Doc Liu 2 days before, doing a complete blood work to test my blood cell count. Most likely after treatment (~4-5 weeks after the final infusion) they will do surgery. Depending on the size of the tumor, they may do radiation after that. I will have to go in to the office every 3 weeks for the next year to get an infusion of herceptin by itself (doesn't have same side effects as chemo). I will probably also be taking Tamoxifen for the next 5 years or so, but still haven't quite discussed that.

Mom and I (and SF branch of Team Amy) have a fun weekend planned while I still feel up to it - salsa dancing tonight, wine tasting tomorrow and just relaxing on Sunday.

Love,
Amy

New fun hair and Mom's here!

Hi Team,

I had a really long day yesterday and was super tired so didn't have the time/energy to post. So yesterday in short was me trying to find out more information about taking short term leave at work and how to make that work (good news is it looks like I'm pretty well covered although may still have to take some state disability at 50%, we'll see how it goes).

Then I got to make a split second decision about my fertility. Apparently if I have any akylating agents in my chemo, which I'm not sure about yet, my chance of going through early menopause is 70-80%. So I decided to do what their best option for minimizing that risk is - take monthly shots of Lupron, a drug that temporarily makes your ovaries go to sleep and stop producing estrogen. The way chemo works, the chemicals attack all rapidly dividing cells, which are cancer cells, but also include blood cells (red and white), hair follicles (thus why the hair falls out), lining of your gastrointestinal tract (thus the nausea and digestive trouble) and of course, the ovaries. This drug puts the ovaries to sleep, no longer making them rapidly dividing, which means they are less likely to be affected by the chemo. The bad side is that I will be going through all the side effects of menopause while also dealing with the side effects of chemo. YAY!!! And yes my boyfriend has been warned... although I'm sure he could always use a beer.

After deciding that, I rushed to get the shot them came late to my chemo prep class where they thoroughly review all details of every side effect I might get and when to freak out and when not to freak out. It was quite overwhelming.

But, at the end of the day, I got to get my hair colored by the lovely Kathleen at the strand - I let her experiment a bit since why not? My hair is going to fall out anyway! Although I have to say I really do love it, maybe I'll do it again in the future at some point.

Today was my last full day of work before my chemo starts so really just tried to get somewhat organized. And, Mom came in today!! Yay!! As I'm writing this, she's entertaining my two cute kitties with a hair-tie (see the pic). Endless hours of fun. And of course we're having a wonderful glass of wine.

Tomorrow morning first thing I have the MRI that will help determine the stage (tumor size and if there are lymph nodes involved) and then at 1:30 big prep meeting with the oncologist. My wonderful boyfriend Anthony is flying in from long beach in the morning, coming to my appointment at 1:30 then flying back down that night since he has to work on Sat morning. I am so lucky to have such wonderful support and love. Thank you to all of you!!! You keep me going and keep me positive.

Much love,

Amy

Basketball and Bone Scans

Hi Team,

Today I had my bone scan, looks like bones are cancer-free! Yay! Another victory down. Now all I have left on the scan front is the MRI on Friday, which will determine the exact size of my tumor and if it has spread to any lymph nodes. Which will allow us to finally give it a stage. But the really good news is with CT scan clear and Bone Scan clear, we are attacking a cancer that hasn't spread far, so this is totally doable.

On a separate note, I played basketball tonight with my girl's league - 'Frankies Girls' (incidentally Frankie's bar on Divisadero who sponsors us is for sale if anyone is interested!) I told my team that this would be my last game playing for a while, as I start chemo next Monday, and we rocked the bball court tonight. It felt great, we won in overtime on a hard fought battle. One of our star posts MZ was taking a free throw at the end (which ended up winning us the game) and I was visualizing blocking out the girl next to me with the same tenacity I am going to fight through this chemo. Poor girl. :-D

Tomorrow is chemo class and I'll be able to let you guys know exactly how many people I can bring to my bi-weekly parties, so stay tuned!

Love,
Amy

Back to Business

Hi Team,

Happy Monday. Lots of news today - mostly good!

Cat scan came in clear (other than the tumor in my breast we already knew about). Funny thing I forgot to share about the cat scan last Friday - the technician who administers it injects you with a bunch of dye to be able to show up in the scan - as he does this, he says to me "you may feel like you have to pee or that you ARE peeing. Don't worry, you're not. It's just the pelvis arteries dilating very quickly." Awesome. But this is actually really good/important news that it came back clean because that means as far as they can tell, the cancer has not spread into far regions of my body. Breast cancer is a curable disease as long as it doesn't spread too far!

Today I also did a MUGAscan (got moved up from Wednesday, that is the mugascan machine to the left). Very interesting process. They take a vial of my blood, leave the IV in my arm for 30 mins while they label the blood with radioactive tracers. They then inject the blood back into me, and put the machine over me to trace for 10 mins as the blood moves through my heart. They can tell how healthy the function of my heart is by doing this. Good news! My heart is very healthy, beating 75% of it's blood through on every beat. Normal is anything above 60%.

The last thing medically related was that I got a voicemail today, the nurse from the oncology department, scheduling my first chemo session. Monday April 19th, at 1:15pm I will start my first infusion and it lasts 3 hours. For some reason that hit me a little hard, it's here, and it's a week away. Pretty soon all these tests and labs are going to get real, and quick. So far I really haven't felt bad other than the emotional stress of dealing with the diagnosis and the occasional prick or bruise from biopsy or IV/blood tests. I am nervous about the chemo. I know all the side effects, I've done my homework and they don't look fun. And based on my calculations, every 2 weeks for 4 months means I won't be done until July 26th. That's of course assuming everything goes to schedule and we don't have to delay at all. July 26th seems like a long time to feel really crappy. Mom will be here on Thursday for a month which will be nice, but I am going to somehow have to learn to cope and manage my quality of life. It seems like the beginning part of a roller coaster where you keep scooting up to the top of a really tall hill and I am just about to get to the peak where I can see that plunge and I am scared shitless. I know I'll make it to the end because lots of people have done this before, and I am a feisty one, but I am sure as shit not looking forward to it.

That said, she did also say in her voicemail that I can bring as many people to my chemo appointments as fit in the room - I haven't seen the room yet, but I was thinking a salsa dancing workshop maybe? I will only take the first ones to RSVP so hurry up, first come first serve ;) PS. I will give priority dates to smokers trying to quit and want to see what it will be like when they get lung cancer

Love,
Amy

Let's Not be Wasteful

Amy cut off a lot of her hair.

And that was just the first snip!

We're debating what to do with it. Some options:

1. cat toy

2. make-up brush

3. duster

4. new wig for Cancer Barbie

Your suggestions?

~Monika

Haircut day!

Hi Team,

I got my hair cut today! I've actually had this regular haircut scheduled for a while, but decided to go super short for two reasons - first, because it will be easier to manage when it starts falling out and also will help with the shock of going from long hair to no hair.

Come to find out, I actually love my new cut, I hope I get to keep it for a while :) And my awesome hairstylist Kathleen (at the Strand, if you need a new stylist she comes VERY highly recommended), is going to dye it crazy colors on Wednesday, although I did limit her to browns, blondes and reds. We'll see what she comes up with!

Love you all,

Amy

A day off

Had a nice day today, no cancer to-do's. Went to see hot tub time machine which made me laugh, but please don't spend your money on it at the theater. Really bad. I did read a lot of the book 'Crazy Sexy Cancer' which I highly recommend if you or someone very close to you has to go through this.

Today I practiced embracing what the Breast Care Coordinator at Kaiser told me the other day - anything and everything you feel, as long as it's not homocidal or suicidal, is totally normal.

One thing I was musing on is in the process of telling people about the cancer, I have gotten a lot of passing comments about how sad it is that stuff like this happens to good people. While I agree, I think we as a culture tend to look at things a little backwards in this sense. We think people are either good or bad, and then as a result things happen to them accordingly (or don't). I think it may be more accurate to say that things happen (or don't) and what people do with that is what makes them into who they are.... so really, although this may look like something bad happening to a good person, it's really just something random happening to a random person, in order for me to take this experience and make myself a better, more loving and accepting person. It's what you do with it afterward that counts, not what you were before it happened.

As I told my Mandy friends in Chicago on the phone the other day, with all the shit I have had to go through (and will go through), I can't wait to meet me when I'm older - I bet I'm really awesome. :)

Love,
Amy

TGIF

So a full day at kaiser SF.... I decided that since I will be having a lot of dr's appointments, going to the dr doesn't mean I shouldn't look cute. I wore my ass kicking cowboy boots, since this whole ordeal will require a bit of ass kicking.

Also, a picture of my first ever hospital bracelet - ok so I wasn't in the hospital today, but believe it or not I have actually NEVER been checked in somewhere that required an ID bracelet like this, save a few water parks and concerts.

First meeting was with the oncologist Dr. Liu. He gave me a lot of really good information and spent 2 hours with me, an hour longer than we had scheduled. I will do my best to summarize but this does get very complicated. The cancer I have is ER positive , PR negative and they are not sure yet about HER2 status. They have sent it to further testing to determine HER2 status. The good news is that the cancer will respond to hormone treatment which means that they know what drug combos will be likely to be effective on my tumor. He said if the HER2 status comes back positive, they will add some other types of drugs to my chemo in order to attack it they way they know how to for HER2 gene related cancers.

He does need the results of my CT scan, Bone Scan and MugaScan before we can start chemo. He'll be meeting with me again next week friday (1 week from today) after we have the results of those tests to go through more details of the exact drug mix we'll be using and side effects, what to expect, timing of it all.

What we do know about my chemo now: It will most likely start the week after next, and we'll be doing "dose dense" chemo which means I get a treatment every 2 weeks rather than 3 weeks. Only because I am young and can withstand it. However, that also means that as I go through chemo, they will be regularly testing my white blood cell count - low white blood cell count means my immune system is very low. I will have to give myself injections of GCSF to boost my immune system. How many/how much will depend on my white blood cell count as we go along.

He is recommending AC-TH (the H is for hercepton which is a hormone to treat HER2 positive cancers, so that H may get taken off if my final tests come back HER2 negative). I will get more details of the effects and side effects in my next meeting with him. I will be doing 4x doses of the AC mix and another 4x doses of the TH mix, which would mean 8 total treatments every 2 weeks, four months total. After that, they usually wait 1-2 weeks and then do the surgery.

Still waiting on the MRI next week to stage the cancer - this will not have as much of an effect on the chemo as it will on the surgery. MRI will tell us how big the tumor is - if the tumor is more than 5 cm or has spread to more than 3 lymph nodes I will have to do radiation as well after surgery.

We did also have a short conversation about fertility today, looks like about 50% of the time, chemo with these hormones will send a person into early menopause. Normally they would recommend saving eggs, but that is a process that takes a couple of months and they do not want to wait that long to start chemo. So, he referred me also to a reproductive endocrinologist to discuss what I can do to best preserve my fertility. However, just good to set the expectation that this chemo may leave me not able to have kids.

The other big blow was that my oncologist was recommending strongly for me to take 6 months off work. Now, not sure if I will need to do that, or if I can afford to do that. He did give me the paperwork to start that process, but I am going to wait a little while, maybe after my first treatment to see how I feel from it, to determine if I can just do a combination of a few days off and/or working from home or if I will have to do full blown time off.

There was a lot more info I got, but for the sake of keeping this manageable, just ask me in the comments if you have more questions - next major update will be next Friday when I meet with the oncologist again - that will be a planning session for starting chemo.

The CT scan was cake although they give you an IV and I learned after he stabbed my right arm and didn't get a vein that my left arm is my better arm for a vein for an IV. Apparently that is out of the ordinary for someone that is right handed. I guess add that to the list of out of the ordinary things lately! :)

Love you all,

Amy

Dinner of Champions

Lol I had to laugh today at the pharmacy the guy hands me two big pint sized jars of Barium Sulphate to drink for my CT scan tomorrow - he said "i hope you like banana smoothies"
Cheers!

Upcoming Appointments/Tests

Hi Guys,

I have all my appointments for this week scheduled now - here is what it looks like:

Friday April 9th:
10:30am appt w/ Oncologist Dr. Liu @ Kaiser SF - this will be the big chemo planning appointment, 8th floor NE corner (RN name is Anna)

11:30am appt w/ Gloria Bromberg @ Kaiser SF - She is the breast care coordinator, she is going to review the services she can help with

2:00pm CT Scan @ Kaiser SF - have to pick up Barium at the pharmacy at least night before, there will be directions for what I can and cannot eat before my scan

Tuesday April 13th:
1:45pm Bone Scan @ Kaiser Hospital Nuclear Medicine dept (SF) - come in at 1:30 for injection, then can leave and come back 3 hours later for the actual scan

Wednesday April 14th:
3:15pm MUGAscan @ Kaiser Hospital Nuclear Medicine dept (SF) - 1 hr duration, measures function of the heart <-- This is very interesting, they will draw blood, mark it with a radioactive tracer, reinject it back into me, then put a machine next to me to watch/trace how the blood moves through my heart as I ride a stationary bike. Whoa. They are doing this b/c of our family history of heart disease - some chemo treatments have negative effects on your heart function and they are going to try to avoid that since I have a long time to live yet!  

Friday April 16th:
9:00am MRI @ Kaiser South San Francisco - Show up at least 30 mins prior, copper IUD is ok, Kaiser SSF 1200 El Camino Real, 1st Floor MRI Dept

Will update everyone again after my oncologist appointment tomorrow - I will have more information about chemo - what chemicals I'll have, side effects, scheduling, etc etc.

Love,
Amy

Introduction

Hi All,

Sorry for delivering this via email but I have discovered that I am such a fortunate person to have so many close friends whom I love that it's just not possible for me to talk to everyone in person with all this information. So, here is the synopsis.

For those if I haven't talked to you in a few days, my biopsy did come back Friday positive for breast cancer - both DCIS (ductal carcinoma in situ) and IDC (infiltrating ductal carcinoma). Today I went to kaiser and had more mammograms done and met with my breast specialist to come up with a plan. She said my type of cancer is grade 2 (range is 1-3) which means it is a medium-aggressive cancer, however, any cancer that shows up in a 28 year old is and should be treated as an aggressive cancer. They don't have a stage for it yet, as that will depend on the results of an MRI I will get later this week (determined by size of tumor and if it has spread to lymph nodes under the arm). She is recommending that I start immediately with chemotherapy - final chemo plan will depend on a meeting with the oncologist, but probably 4 months of infusions every 2 weeks.

She is also recommending a skin-sparing mastectomy on the side of my left breast to entirely remove the tumor and remaining breast tissue as the tumor is fairly large. I will get reconstruction done afterward, but will have to meet with a plastic surgeon closer to the time of surgery to get details about reconstruction. After my meeting with her they took a bunch of blood to do a full blood workup on me, and over the next week I will get an MRI, CT scan, bone scan and MUGA scan as well as meet with my oncologist. After my oncologist meeting, I will start chemo. After I finish chemo they will do surgery and go from there. In my mastectomy surgery, she will also remove some lymph nodes and have them tested to make sure it has not spread. There is the possibility of radiation also after surgery if the MRI from next week comes back with the tumor over 5cm or more than 3 lymph nodes are found to have cancer tissue. She is hoping to avoid radiation though.

I am doing ok right now but honestly overwhelmed with the amount of information I have to learn and get well versed in, fast. I am still somewhat in shock since as far as I know, it is not in my family and I am very young. I do feel very confident with my doctor, so far she has been fantastic - my surgeon is Dr. Samantha Langer (Kaiser SF) and my oncologist will be Dr. Raymond Liu (also Kaiser SF).

Love you all and thank you for all the well wishes and support - please keep sending them along even if I don't respond immediately, I still love you all and very much appreciate it, just trying to take care of all the necessities first.

Love,
Amy