The Girls!

Surgery last Friday went well. The worst part is the prep - IV stabbings and the needles in my back for the nerve block. After that I went off to sleep and woke up with a great rack! I was sent home Friday afternoon and was not allowed to remove any of the gauze or the very tight support bra until seeing my surgeon on Monday for a follow-up visit. So I looked like Dolly Parton over the weekend swollen and stuffed with 7 lbs. of gauze. I was a bit worried that my surgeon had decided to see how large she could make my breasts before I would fall over. But on Monday when everything was unwrapped I was pleased to see 2 breasts that were the same shape and size (1st time in more than 6 months!) and they were the right proportion for my body. Unbelievable! I still have tape over my stitches and scars so I haven't been able to see those yet, but they don't look too bad from what I can see. The pain has been manageable, only tylenol if anything. I have to stay in the support bra until Monday and then I can wear anything I want. No exercise or lifting anything over 10 lbs. for a month. So by January 1, I'll be able to have my life back.

I had my herceptin infusion on Wednesday. That was uneventful except that the needle hurt which was to be expected since I had had surgery a few days before at the same spot.

I visited my smart ass oncologist today. He asked what hurt more, the surgery or the Chargers loss to the Raiders. Can I get a new doctor please? As my mom says, I've met my match. Anyway, everything checks out fine. We had a talk about how I would know if the cancer came back. If it were to come back it will most likely be in my bones, liver or brain. There's not really an easy way to tell if cancer is growing in these spots, so I need to report any pain that is getting worse (rather than getting better) in those areas. And as you know I've been very negative about taking tamoxifen. But after Elizabeth Edwards died this week, I thought if my cancer were to come back and I had not taken tamoxifen I would never forgive myself. I don't like to operate out of fear, but this is brain, bone & liver cancer we're talking about. So, my oncologist wrote me a prescription. I'm not going to pick it up until after Christmas. Then I'll take it until my herceptin is done (6 more months) since it will be the most effective while taken together. After that I'll decide whether to continue or not. So if I'm bitchy in January, I'm blaming my hormone levels. Just so you know!

Thanks for all of the support surrounding my surgery last week!

Count Down to Surgery

Wow, I went the entire month of November without a blog? Thankfully I haven't had to be too worried about the cancer for a while! Here's my quick update:

Hair - yes it's finally growing! I have about as much hair on my head as when I first shaved it back in June. My eyebrows have completely grown back and I am back to shaving my legs (boo!). My eye lashes are still very sparse, but I'm hopeful they'll grow back in full force too.

Hot Flashes - Seem to be gone (but I don't want to jinx it, so I'm not saying anything more)

Herceptin - Still getting it every 3 weeks, but am not experiencing any side effects so other than the pain of going to the infusion center and getting IV'd on a regular basis it's pretty easy.

Foob - My next surgery is scheduled for Friday. I'll have the expander removed from my foob and replaced with an implant. I am very excited to have a "real" boob rather than the alien version I have now. My doctor asked, "So you want to go bigger than this one right?" Is she crazy? My foob's been bumping into things for months. No thank you! I'll keep my tiny boobies please. On the left side (my cancer-free, up-until-now-surgery-free boob) I'll also be getting an implant and a bit of a lift (boo gravity!) so my 2 girls will actually match each other. Very excited about that! After this surgery, I will probably need one surgery more after my port comes out and then I'll get a fake nipple attached to the foob (it's a nubble right now) after that. So I'm not completely done yet, but Friday's surgery will go a long way in bringing me back to normal.

Margaritas, Herceptin and an Echocardiogram

I decided that after depriving my body of an adult beverage for this long that tequila might not be a good way to get my feet wet. I'm not really a dive-right-in kind of girl - I'm more of a let's-test-the-water-first person. So at last Sunday's Chargers game I left the margaritas at home and went with Coors Light instead - 3 to be exact (or was it 4?) They were refreshing and delicious just as I remembered. I probably should have had the tequila after the Chargers pathetic performance, but if I start drinking every time I'm frustrated with the Chargers I would never be sober. But I digress...

I went for my first herceptin-only infusion on Wednesday. Herceptin is the drug that targets my Human Epidermal Growth Factor Receptor 2 (HER2) cells which are overexpressed in my body and therefore encourage cancer cells to grow. I've been receiving herceptin in my chemo cocktails, but now am receiving only it. There are no side effects so I wasn't worried about it at all. When I got settled in the infusion center I felt really low. I've been so relieved and excited about finishing my chemotherapy and here I was sitting right back in the infusion center with the same needle in my port connected to the same IV machine. Yes, it was for a much shorter stay (only 30 minutes to receive the IV) but other than that nothing had changed. I better get used to it - I have 11 more infusions before I'm done in June 2011. And so far, so good - no side effects or anything yet so that is fantastic!

I met with my doctor before the infusion and we discussed the tamoxifen hormone treatment again. He said that all of the studies of tamoxifen were done before the discovery of HER2 and triple positive breast cancer so he can't tell me what the benefit would be to take the drug. He said in small animals growing human cancer tumors there seems to be a benefit to taking tamoxifen along with herceptin. You know, I'm just not sold on the small animal research argument when it comes to putting even more meds in my body. So we agreed to continue to disagree and let my body detox for awhile before discussing it again. I think he thinks he can wear me down by recommending tamoxifen on every doctor's visit. What he doesn't know is that the cancer cells have not affected my stubborn cells so he's in for an awfully long conversation. I hope he takes rejection well.

On Thursday I had a follow-up echocardiogram. Herceptin and the other chemo drugs can damage my heart, so I need to get it checked periodically. If you remember my post in June about the first echocardiogram you'll know this was my favorite test. I get to lie on a bed in a dark room listening to the swooshing of my heart with warm goo being rubbed on my chest. Maybe I'm a bit odd, but I found it very relaxing! The technician said that (unofficially of course) everything looked good, so that's a relief.

And if you're keeping score at home, hot flashes are still winning over hair growth. I'm hoping that will change soon.

Chemo #6 Complete!

On October 6 I completed my last round of chemotherapy. I got to sit at a station with a fantastic garden view. It was very nice to be able to look out the window and not at another station's divider curtain for 6 hours. I had friends and family bring lunch and come visit. All in all it was a nice time. When I finished, the nurses and my family were congratulating me for finishing with the hard stuff. I felt like it wasn't that big of a deal, because I knew I had the hard part yet to come over the weekend. But as soon as I got in my car by myself I started crying. I'm not sure why - it must have been from relief to be done with the chemo and the sickness that comes with it. I cried all the way home and then sucked it up and was fine.

I had my usual doctor's appointment before the infusion. Everything checked out fine. My doctor and I are disagreeing about me taking tamoxifen. It's a drug that reduces estrogen levels that is commonly prescribed for women with estrogen receptive breast cancer like mine. I don't want to take it, because I feel like my body has had enough crap put into it in the past 5 months and I would like to detox and work on naturally boosting my immune system. I don't want to sign on for 5 years of taking a hormone regulating drug. My doctor then suggested just taking it for the next 9 months while I'm receiving the herceptin. I'm considering, but am not convinced. If it is effective at reducing the risk of breast cancer recurrence with only 9 months of treatment, why prescribe the original 5 years? I feel like because it's so commonly prescribed that I'm receiving a cookie-cutter prescription and don't like it. Since my cancer is both estrogen and her-2 positive, I can't get a straight answer for increased survival rates by taking the tamoxifen. The chemotherapy and herceptin were supposed to reduce my chance of recurrence from 50% to 15%. If the tamoxifen reduced that recurrence rate to 5% or less, it might be worth drugging myself for 5 years, but otherwise I'm not interested.

At the same appointment, I asked my doctor when I could have a margarita (it's been 5 months people!). Since he's a smart ass like me he said as soon as I start taking my tamoxifen. Very funny doc... He then recanted and said 3 weeks, which is October 27. I figure the Chargers game on the 24th is close enough, so I'm planning to enjoy an adult beverage during the tailgate. Plus, how can you watch the Chargers this season without alcohol? Painful! But that's a post for my Fire Norv/Crosby's a Boob blog.

So, I received my last chemo infusion on Wednesday, October 6. Usually I would start to feel tired on Friday afternoon and sick on Saturday morning. Well this round hit faster and harder than the others. By Thursday mid-day I was nauseous and exhausted. It didn't matter that I took the anti-nausea drugs, I was still nauseous. I ate crackers every 15 minutes or so to keep something in my stomach and it helped a bit. By Sunday afternoon I was recovering and the nausea subsided. I have continued to be tired, even today, but I guess it's to be expected.

So next steps are to continue receiving the herceptin and reconstructive surgery. I've been receiving herceptin as part of my chemotherapy cocktail, but now I will just get it every 3 weeks. It's still given through the port in my chest, so I'll have that lovely accessory under my skin until next June. I'm scheduled for surgery on December 3. That I'm looking forward to! Other than that I'm waiting for my hair to grow and the hot flashes to subside.

All in all, the chemotherapy was not that bad. The infusions were painless and ended up being a great way to catch up with family and friends. The side effects were not fun, but I really was only sick 2-3 days with each round. I was tired a lot, but tired is manageable. The hair loss sucks, but the wigs are kind of fun and it's shaved 20 minutes off my morning routine. I would definitely not want to do it all again, but survived just fine. I am so grateful to all of you for the encouragement and support you have given me. My experience would have been much different without all of you rooting me on and praying for my recovery. I am very blessed to have you all in my life!

God Bless Sephora!

I did something Wednesday afternoon that I have never done before. I set aside my intimidation and walked into the Sephora cosmetics store in Fashion Valley. I know most of you girls love this place, but I never got into the whole make-up thing. A little mascara, a little lip gloss and I'm out the door. Guys - Sephora is kind of like Best Buy for cosmetics. There are so many tubes, bottles, powders and potions that it will make your head spin!

My eyebrows and eye lashes have started falling out. It's slight, but becoming noticeable. With this current round of chemotherapy plus one more there is a chance that the loss will be significant by mid-October. The bummer is that I will be done with the chemo by then - so right when I'm feeling good and recovering from 4 1/2 months of hell is when I will look the sickest. So, I decided it was time to go to the pros and ask for help.

I'm not sure why I was afraid of this place. This was a really fun experience! I got to sit in the special make-up application chair with my own mirror and make-up artist. I had decided before I got there that there was no way I was buying and applying fake eye lashes. I don't have the patience or desire to glue something to my eye lids. So my search was for products to fill in my thinning eyebrows and highlight my eyes without lashes/mascara.

Who new there were so many easy solutions?! (I sound like a kid in a candy shop, don't I?) For eyebrows I tried a pen that you use to draw in fine hairs. It did the trick, but the color wasn't exactly right. I settled on wax and powder. You apply a thin coast of wax from a wax pencil over the brow and then eyebrow powder with a small make-up brush. The powder sticks to the wax and voila! the brows appear full.

For my eyes, the make-up artist suggested I use my daily mascara sparingly only on special occasions. This is because the more I handle them during application and rub them to remove the make-up the higher the chances I'm pulling them out and causing even more damage. Makes sense - but breaking a 20 year habit won't be easy! We tried a few eyeliner colors and she showed me the correct way to line my eyes. When I left there I had a bag full of goodies and a lot less cash. But, now I feel like when I walk down the street at least you'll all be staring at my eyes and not my foob! I'd still rather spend the money on Chargers apparel, but removing the worry of looking sick from missing eyebrows was well worth it.

Round 5

The best thing about being in this chair hooked up the IV for the next 6 hours is that 3 weeks from now will be my last chemo session! This is round 5 of 6. Easy! I haven't posted anything new since the last round even though I promised I would... you missed another fever but everything else was easy. The weekend after round 4 was uneventful. I was tired, but not as nauseous as I usually am. But on Saturday night of Labor Day weekend I felt like hell and had a fever of 101.5. Anything over 100.5 means a call to the doctor and a trip to the emergency room. I tried to sleep it off, but the fever was still there on Sunday morning, so I called the doctor. Since I was feeling ok except for the fever she had me go to the infusion center for some blood labs to see what was going on. My white blood count was really low so she prescribed some antibiotics. I was able to convince her that I would report if the fever went any higher or if I had any pain. She sent me home with my antibiotics and the fever broke the next day. Other than that, everything else was business as usual.

I woke up yesterday morning and heard the kids chatting. Ryan asked Jake where I was. Jake replied that I was still sleeping and that they should let me sleep because I would be getting my bad medicine tomorrow and it makes me sleepy. I was very touched to hear Jake taking care of me, but also sad that my kids are worrying about me. It just motivated me to be even stronger so that I can be a great mom despite my energy level or how I'm feeling.

Unfortunately there's no new foob news. I know some of you tune in just for that. And other than the complete destruction of my Chargers on Monday night, everything is good. Thank you to everyone for all of your support!

Round 4 Done

Yes, I've been lagging on my blog. I have a good excuse though since I've spent the past 2 weeks moving, unpacking and painting. I am also blaming the move for my complete failure to reach my goal of listening to the positive imaging tapes 3 times per week. I haven't even listened once since the last blog. Lame...

I survived the fourth round (of 6) on Wednesday. As usual the day started with an appointment with my oncologist. He said everything is still going great. He's a bit concerned about school starting for the kids and me since elementary school and preschool are such petri dishes for germs. I'll have to be extra vigilant about hand washing and drown my kids in embarrassing amounts of antibacterial gel.

Then it was up to the cafe for a bagel and juice (since I had an hour to kill before my infusion center appointment). I got settled in my cozy recliner around 11:00 (1/2 hour late). I had a wonderful nurse who was training a new chemo nurse, so everything had to be explained in painful detail. It took forever! Plus, the lab at the infusion center was down, so my blood work had to be sent to Thornton Hospital, which also slowed down the process. So, to receive 3 1/2 hours worth of meds (if you generously add an hour for blood draws, port flushing and anti-nausea meds that's still only 4 1/2 hours) I was there for 6 1/2 hours. Including my doctor's appointment and bagel stop, I spent 8 1/2 hours at UCSD! I mean I like the place, but that's a tad ridiculous.

My blood work was similar this time to round 3. The chemo is lowering my potassium levels, so I had to swallow 4 bright yellow horse pills and receive another list of foods that are high in potassium (no bananas are not even close to the top of the list - try tomato paste and leafy greens). The other issue is my hemoglobin. Hemoglobin stimulates red blood cell production and when that's low you are anemic. It is a common side effect from the continuous doses of chemotherapy to become anemic. I've been researching natural ways to increase my hemoglobin and red blood cell production because the nurse was talking about putting me on medication to increase it and if that doesn't work to have a blood transfusion (worst case). I'm not a big medicine fan. I don't like taking one medication and that causes a side effect so you take another one to ease that effect that in turn causes another... If I can choke down more leafy greens (mmmmm, my favorite - see positive imaging at work) then maybe I can avoid the whole mess.

The only other side effect news is something I'm choosing to call Sleeping Ovaries (because I'm much too young to use the "M" word - temporary menopause) I know - outrageous right! The chemotherapy has caused my ovaries to take a well deserved nap. The hope is that they wake up refreshed after chemo is done and continue to do whatever it is they do until I'm the appropriate age to blog that word again.

I ordered a fantastic shirt online last week (thanks Alex for the link!) that has the big pink breast cancer awareness ribbon on the front and in big black letters says "Hell yeah they're fake! The real ones tried to kill me!" I love it! Speaking of foobs, I set my reconstructive surgery date for December 3. I am very excited to have it scheduled as that signals the end of all this cancer crap (except for the 12 months of herceptin infusions, but I'm choosing to ignore those for now). The only problem with that date is it means I'll be missing another home Chargers game this season! In the 14 years of my season ticket holder status, I have missed exactly 1 home game since I was busy birthing a child. (Yes, I should have planned that pregnancy better!) This season, I will be missing 2 games! So far, as a season ticket holder I have missed 1/140 games for a 0.7% absence rate. By the end of this season, I'll have missed 3/150 games for a whopping 2% absence rate. I've already alerted the team and explained the situation, so they are not distracted when they look into the stands and notice that I'm not there. I don't want to be blamed for Norv's poor playoff preparations - but that's another blog...

So, today I'm feeling good. Just a bit tired. I'll get more tired as the day goes on and will spend tomorrow feeling crappy moving from the bed to the couch. But by the middle of next week I'll be back to avoiding the positive imaging tapes with more unpacking. Thanks to everyone for all of your support!

Positive Imaging

I couldn't find a positive imaging book that included my cheesecake healing idea, so instead I ordered the Fighting Cancer tape from Healing Journeys (thanks for the suggestion K2!). I have only listened to it a few times since it requires sitting still and concentrating and that's not something I do often. But, the point is to learn to slow down and take care of myself, so I've set a goal to listen at least 3 times a week (they suggest twice a day). It starts in your calm, happy place. Mine is on a grassy hill overlooking the ocean in Wailea in my private cabana on my comfy lounge chair watching the sea turtles swim by. I can hear their fins lapping the water as they slowly pass. Of course there is a bottomless pina colada with a slice of pineapple and a pink paper umbrella at my side. The tape says to picture a warm peaceful beam of light from the sky that grows larger until it embraces you. From the surrounding light you can feel a warm healing energy throughout your body. Then there are gentle light beings around you who offer healing powers. At first I pictured the aliens from Cocoon, but then the tape suggested they were people who have loved you. I am a big believer in guardian angels, so it was an easy switch from Cocoon aliens to visualize my grandparents, great grandparents and brother who are bathed in white light. They surround me and I feel their energy. The light soaks through my body and I visualize my cells. The tape suggests that the cancer cells are chaotic and confused. To me chaos is fast and suggests uncontrollable cells, so I prefer to picture the cancer cells as big, slow and dumb. I know it contradicts the aggressive nature of the disease, but it works better for my brain. So the big, slow, dumb cancer cells are attacked by my blood cells. I see the blood cells as stingrays that stick their barbed tails into the cancer cells. The tape suggests the cancer cells become small thread-like waste. I prefer to think of them as shriveling up to look like raisins. Then the raisins are whisked out of my body through the natural waste disposal system (I don't visualize that part). It is relaxing to listen to the woman's voice on the tape and kind of fun to visualize the destruction of my cancer cells. I'm not sure if it helps my healing, but it definitely can't hurt, right?

In hair news, I survived my first Chargers game wearing a wig. I chose the short, blonde wig and my section mates said my hair looked "sassy". I'll take that :) I noticed while going through the security line that everyone wearing a hat was asked to lift it up so security could look underneath. Now I'm rethinking my hat hair/Chargers hat combo for day games (the hat hair only goes around the sides of my head - the rest is covered by the hat - it's cooler than wearing a wig) I don't really want to be flashing my nearly bald head to a line of drunk fans. I'll be missing the home opener due to chemotherapy, and there's not another home game until October, so I have time to devise a solution. And just to be clear (since I've been asked) even though the signature color for breast cancer is pink, there is no way I'll be wearing a pink Chargers jersey. Pink has no place in the NFL (or any sport really other than golf, which is really more of an activity than a sport anyway...)

Thank you for all of your support. I've survived the hard part of round 3, so it's all down hill from here!

Chemotherapy - Round 3

Today is my 3rd round of chemotherapy - that means I'm halfway done! Hurray! Had a good meeting with my doctor this morning. Health-wise everything is great - I'm tolerating the meds well. The bad news is he is highly discouraging my planned trip to Seattle for Steph's birthday and the Chargers game. I had my labs done last weekend to correspond with when I would be traveling during the 5th round of chemo. To travel my blood counts needed to be between 1000 and 1500. Mine were 68 (no I did not forget a 0). Very low. That means the chemo is kicking the hell out of my immune system. (At 50 I would be hospitalized for observation) I could overrule the doctor and go anyway, but 2 planes and a stadium full of people who live without sunlight is probably not the smart thing to do.

Anyway, I'm feeling good. I put on my long blonde wig yesterday to get some pizza and Jake said, "Mom! You look just like Hannah Montana!" I love that boy!

Wigs and Positive Imaging

I am 12 days into round 2 of chemotherapy and feeling great. Once I get through that first week, everything seems to be pretty close to normal. I've been running a few times, so I feel good about that. Days 10-14 are when my blood counts are at their lowest, so I'm the most susceptible to germs and getting sick. I've become slightly neurotic about anti-bacterial gel and hand washing, but I'd rather be neurotic than sick.

My hair is very thin and continuously falling out. I don't know if I'll end up completely bald, but it will definitely be close. I took my wigs (the girls) to my hair dresser on Friday and she lovingly spent more than 2 hours shaping them and thinning them out. They are so much easier to wear now! Plus I had a blast getting 4 haircuts in one afternoon. I wore the short blonde wig first and she didn't even recognize me. Once that one was fixed (bangs needed a trim) I took it off to put on the next one. She started laughing because she thought I was going to want to hide in the bathroom so no one would see my bald head. Me? Hide? No way! Especially when I can scare the hell out of the women sitting next to me who have no idea that my hair's about to come off. I saw some pretty surprised faces! Anyway, I now have 4 very wearable and more comfortable girls - all look very different - so I have to decide which person I'm going to be each morning. It's more fun than I thought wig wearing would be - although itchier too.

I am spending some time researching positive imaging. I've realized my brain is working against me to make me sick. For example, whenever I smell rubbing alcohol I feel nauseous. I also get nauseous when I look at my anti-nausea meds. Even on a day like today when I feel completely fine. If I look at the pill bottles, I have a negative physical reaction and have to put food in my stomach to stop the nausea. I know it's all in my head, but telling myself that doesn't make it not happen. So, I've decided that if my brain can make sick, than it surely can also make me well. I would like to learn how to look at a piece of cheesecake and feel instantly energized and healthy. Why not? Has anyone read the positive imaging book by Norman Peale? That seems to be the go-to positive imaging book and has good reviews. I'm going to grab a copy this week and start reading. I'm not good at sitting still or meditating, so I need to find a way to train my brain that will fit into my type-A world. If Pavlov can train dogs to do it, then I certainly am trainable!

Thanks for all of your support!

Day 5, Round 2

Round 2 of chemotherapy has definitely been harder than the first. Receiving the drugs on Wednesday was the same, actually a bit faster (4 1/2 hours). I took the anti-nausea drugs Thursday and Friday around the clock just in case. Saturday I had a killer headache and slept off and on all day. I didn't feel nauseous, so I didn't take the anti-nausea pills. I woke up around 11:00 on Saturday night in complete misery. It was as if the worst flu I ever had hit all at once - I was nauseous and sweating, and dizzy. I quickly took one of the anti-nausea pills and laid on the bathroom floor where I remained for about 3 hours. I eventually made it to the couch and then back to bed. Sunday morning I felt much better, just really tired. As the day went on, I felt better and better and today am feeling fine. I am having the metal taste/sore tongue thing going on again, but that should be gone in a few days. I would write that so far there hasn't been any of the horrible acne, but I don't want to jinx it, so I won't write it. My skin also hasn't been as dry, but I've been using tons of face cream to try to prevent it this time. Hopefully it's working.

I also have exciting news! I was in line at Lowes earlier in the week wearing my short blonde wig. A woman who was not wearing glasses and did not appear to be mentally challenged asked me if I had just had my hair done because it looked really cute! I felt like the heavens opened up and angels were singing. I spend my day questioning everyone in my mind "Can she tell it's a wig?" "Does he know it's a wig?" "Can you tell it's a wig?" (No, I'm not yet confident in my new hair... ) So, when this woman standing 4 feet from me asked about my hair, I almost kissed her! Of course, I had no idea what to say, so I said, "Oh, it's a wig!"

Round 2

Just got settled in my recliner for round 2 of chemotherapy. I saw my oncologist this morning and had a good appointment. I was reprimanded for not going to the emergency room when I had my 102 fever. I was told that if it happens again (which I am at risk for) I should go immediately to the emergency room. OK, message received. My doctor was proud of me for shaving my head and even more impressed I did it following the no-alcohol rule. Props for me! He also tentatively approved my trip to Seattle in September for Stephanie's birthday and the Chargers Seahawks game. I need to have my blood work done this month at the same time my trip would be during round 5. If my labs show my blood counts are strong then he said he would assume they will be in the same place during round 5 and approve my travel - hurray! He made a big point of saying that my blood counts determine my travel schedule, not a pre-purchased plane ticket. In other words, anything can happen and the labs rule. I'm OK with that. I also complained and whined about the dry, flaky skin and acne I experienced in the 1st round. He said the dry skin was caused by the chemo, but that the acne was most likely caused by the steroids (I take steroids for 3 days at the beginning of each round of chemotherapy). It is good news that it's not the herceptin causing it which means I won't have to deal with it for an entire year - just 5 more times. He even said it may not happen again - my fingers are crossed!

Earlier this week I saw my surgeon and had my foob pumped up to it's new and final size. My surgeon actually said, "since the other one is so small, I think we've reached maximum capacity". Hey, it may be small, but it managed to earn beads at OTL in the late 90's, nourish 2 children and put me in this chair receiving chemotherapy drugs, so I guess size doesn't mater in this case. Anyway, the good news is that I'm on the books for surgery in late November - 20-year-old boobs here I come!

My oncologist said I should tolerate this round the same as round 1, except the fatigue could be worse since it's cumulative. So I'll be napping most of the weekend, which is not a bad way to spend a lazy summer afternoon. Thanks for your prayers and support!

Bye-bye Hair

Hair shedding in my bed, on my clothes, on the furniture, whatever. When hair starts shedding in your food, you know there's a problem. I had about week left of hair, so decided to just cut it off. The boys cut whatever they could with the scissors and then I called Scotty to shave the rest (because he has the coolest hair around!) No tears and no margaritas! Thanks Scotty!

Maybe I Spoke Too Soon

After posting on the 5th how invincible I am, I spent the past day and a half in bed with a 102 fever and sore throat. Damn it! I much prefer invincible! I am feeling much better today. But, I am starting to believe that my hair is not immune to the chemotherapy. This morning I saw my hair on my pillowcase when my head was already out of bed. I grabbed my hair into a ponytail and ran my hand down to the end and was left holding a handful of hair. More proof that I am not invincible. I guess I'll be returning my wonder woman cape to the invincible store and donning a wig instead. Actually, I think I'll donate my wonder woman cape to my mom - she's spent the past 2 nights here taking care of my boys, my house, and me. She's the real super hero! Thanks Mom!

July 5

I hope everyone had a great 4th of July weekend! I'm feeling great and have even started running again. So you can all worry about someone else until my next round of chemo on the 14th :)

Chemo Day 6

Just thought I'd check in with everyone to let you know I'm feeling pretty good - downright normal - today. Today is the 6th day of chemotherapy and I've heard to expect the worst from day 2 all the way to day 10. So, I'm not sure that I'm out of the woods yet. I'm actually pretty relieved so far. My side effects have been more annoying than debilitating. The biggest factor has been fatigue (just like the doctor said). I am walking around with the energy of a sloth. I did sleep about 15 hours on Friday night and I think that helped a lot. I've also been able to nap almost every day for at least an hour. We'll see how my energy is this afternoon - by 3:00 I have been more of a watcher than a participant. Other annoying side effects have been a constant headache (sometimes better, sometimes worse, but constant) and tummy issues (but have been able to avoid the nausea meds). But by far the most annoying side effect has been a complete teenage acne flare-up. If you knew how long it took me to reconcile with my skin after high school you would realize what a mean side effect this is. I mean is there no one at the FDA with a heart? Let's see, this drug will zap all your energy, make you bald, make you feel sick, and bring back memories of Oxy 10 - approved! I know I shouldn't be complaining - it is way better than the alternative. I need to find out which drug is the acne culprit. I've read it's herceptin which will be a real bummer since that's the drug I'll be receiving for a year. Emotionally it has been stressful waiting to get sick. That on top of the other drama has set me off a couple of times in the past few days and if you've been on the receiving end I'm really sorry. Hopefully I'll continue to feel better until the next round of chemo and be back to my charming self!

1 Down... 5 to Go!

OK, you can all stop worrying about me. I survived my first chemotherapy infusion. I certainly don't expect the next 3 weeks to fly by with no side effects, but as for the infusion, it was a piece of cake. I got my own recliner right next to a window overlooking a garden, my own TV with HBO, a restaurant menu for lunch pick-up or delivery, visits & snacks from family and friends, and lots of texts and email messages. Seriously, sitting with my feet up for 4 hours was not bad at all. The port was great - no poking my arm to find a vein. I did feel the needle when my nurse first put it in the port, but that was only 3 seconds of cussing in my head. Then, I didn't feel a thing after that. The nurse first drew blood to run my labs. They would take about an hour to process, so I started with the Herceptin infusion, since it shouldn't affect my blood counts. That was 1 1/2 hours. By then my labs had come back looking good, so it was time for the hard core drugs. There was a 15 minute infusion of an anti-nausea drug (Aloxi) and then 1 hour of Taxotere (this is the drug that will make my hair fall out). If I was going to have an allergic reaction to a drug, it would have been this one, so it was given slowly at first, and then a bit faster once it was clear that I could tolerate it. Next was another anti-nausea/steroid (Decadron) - which I have been taking at home & keeps me up half the night, so if any of my night owl friends want to chat, this is the week to call. Finally I finished up with another hour infusion of Carboplatin. So, 5 drugs in about 4 hours. Then the port was flushed, the needle removed, and I was sent home with a blue Snoopy bandaid.

The infusion center was pretty cool. The IV was on wheels so if I wanted to roam around or visit the bathroom I was free to do that without disrupting the medication. Once I was in my chair with my pillow and blanket, I was set, so the roaming report will need to wait to the next infusion. Mom stayed with me the whole time and picked up lunch from the hospital restaurant and picked up my anti-nausea medications (3 different kinds, just in case) from the pharmacy. A friend came to visit with smoothies for the last hour for an extra special treat - thanks K!

Before the chemotherapy, I had a quick visit with my oncologist. He tried again to convince me to cut my hair. I tried again to convince him that if I am the one person whose hair is resistant to Taxitone that medical researchers will be thanking me for have extra hair to donate for studies. I also tried again to convince him that alcohol and chemo do mix, especially during the Chargers season. He made what I think was a sarcastic comment about how much I could drink during the playoffs on the Chargers road to the super bowl (my chemo ends in October). How did I end up with the booze-banning doctor with no love for my Bolts? He actually recommended O'Douls as an alternative to my tailgate margaritas! Outrageous!

For now, I'm planning to go on with each day and see what happens. So many of you have offered to help with the kids if I'm not feeling well, that I feel totally prepared for anything. My next infusion is in 3 weeks on July 14. Before then I see my surgeon who's going to pump up the expander so my foob will be even more spectacular! Thank you for all your good wishes and messages today - it made my day go by much faster.

Port is In

I'm hurting a bit today. It's the last day of school though, so I'm sucking it up with the help of my extra strength tylenol. I had my surgery to get the chemo port inserted yesterday. It was way different that the first surgery. I was calm and relaxed and joking with the nurses and doctors. Before I went to the hospital I put on my favorite bathing suit top and outlined it with a pen so the doctor knew his parameters for placing the port. He thought that was so ingenious that he showed everyone in the operating room and said he was going to advise all of his patients to do the same thing. It just seemed like the logical thing to do - if I don't tell him where I want it how would he know? Once I was in the operating room, I was completely covered from head to toe with a big blue plastic sheet. There was a little window on the right side that I could look out. Whenever one of the nurses wanted to talk with me they would pop their head through the window. I was given drugs through the IV and didn't feel a thing even though I was awake the entire time. The doctor made an incision on the left side of my neck through which he inserted a catheter which connected to my vein and made another incision a few inches below my collar bone where he inserted the port. The entire surgery lasted about 45 minutes. When they were done, one of the nurses had me sit up and asked how I felt. I said I was a bit tired but OK. He handed me my bag of clothes (I was dressed from the waist down) and led me to the dressing room to get changed. I put my shirt on and felt really woozy. When I came out of the dressing room I had to lean on the wall or I would fall down. The nurse led me back into the operating room and had me sit down. I remember saying I really need to lie down. The next thing I knew I woke up back on the operating table surrounded by 3 nurses. I'm pretty sure I said "I told you". So I laid there with my head below my feet for about 10 minutes before we tried the whole routine again. This time, I was wheeled to the car for my mom to worry about me passing out. I pretty much stayed on the couch for the rest of the evening and then went to bed. I feel fine today, except for the pain at the surgery site. I'm hoping by tomorrow it will pass.

In foob news, I've been waiting and wondering and watching for 7 weeks now. The big question has been "will the nipple survive?" Well I'm happy to report I finally have the answer to that question. And the answer is... sort of. Sort of because all of the tissue did not survive, so it's much smaller than my other nipple. In fact, it's more of a nubble than a nipple (you know, kind of a nub of a nipple). There's definitely something protruding where the nipple should be, so that is good news. And no Friends fans, a nubble is not the same thing as Chandlers's nubbin - refer to wikipedia if you are confused. So the foob continues to heal and hopefully yesterday's surgery will too. I'm attending a chemotherapy class tomorrow to learn more about what to expect and then Wednesday, June 23 is the big day when my treatment begins. Thank you for all of your notes of encouragement and your prayers!

Wig Shopping

Today was wig shopping day. I was so thankful Stephanie came with me! I learned about mono-filament wigs and lace cap wigs and lots of things I never wanted to know. The wigs are ordered in the style and color you choose, so my job today was to try on different styles and colors of wigs and make a decision. Then the store will combine the chosen style with the chosen color and will order my wig. Since there were no wigs that were as long as my hair in a similar color, I got to try on all sorts of hair! I've attached some photos so you can see how the appointment went and also some potential styles for next year when my hair starts to grow back in.

The 1st photo is a short bob. Too dark & too short for me but a cute cut for someone with more style than me. The 2nd photo is of the back of the 1st wig.

The 3rd wig is extremely short, but the color was good. I think this photo shows the color I ordered.

The last photo is kind of the style I selected. The one I ordered is about 4 inches longer, but a similar cut. It was the most similar to the style I have now.

The next step is to wait for the color/style combination wig to come in and to go try it on. Hopefully it will look good and I'll take it home. If not, it's back to the drawing board. Luckily I have about 4-5 weeks before my hair will fall out, so I have some time to play.

Or, I'll just wear my Chargers hat everywhere...

Foob Jealousy

I went to my 6-week post surgery appointment this afternoon and the doctor said everything looks great - let's expand it. I laid on my back on the table and she cleaned the foob with iodine, then felt around for the right place to inject the saline. I held a bag of saline (probably the size of a sandwich bag) which was connected to a tube and a syringe. The doctor inserted the needle into my foob and started filling it up. I didn't feel anything except pressure when the needle was inserted and when she was done my left breast was jealous of the foob. I can't think of something round between the size of a softball and a cantaloupe, but if I could, you could cut it in half and stick it on the table and get the right idea. Of course to get the full effect you can stick a raisin on top to represent the nipple scab that hasn't come off yet, but that may be crossing a line. Anyway, the foob healing is coming along, I'll get expanded again in about a month and can have my reconstruction surgery after the chemotherapy treatment. So hopefully by Christmas the girls will match.

I also met with my oncologist today. He said the bone scan and echocardiogram looked good. (By the way, an echocardiogram is my new favorite test. You just take a nap on your side under a warm blanket while the nice radiologist rubs warm goo on you. So relaxing.) He answered a bunch of my questions, so I'm feeling better about the chemo (knowledge is power!) I am scheduled to start June 23. He also got me set-up on an online system where I can log in and see my lab results and other medical info and email him or the nurses. Pretty cool stuff.

I also talked with 2 different clinical trial coordinators about their tests. One shuts off your ovaries for 5 years with a monthly injection to reduce the amount of estrogen in your body. There's no way I'm signing up for 60 injections, especially since I'm not convinced hormonal therapy helps the survival rate for triple positive cancer. The other tracks ovarian function through a blood test once every 3 - 6 months for 3 years. I might do that one. It won't help me at all, but the information could help younger women decide the right course of treatment if they want to have children after chemo.

So, pretty much good news from the medical professionals today. I'm excited to get started with the chemotherapy so I can put this whole cancer thing behind me.

Bone Scan

I didn't end up getting lectured by my doctor last week. He actually thought it was a good idea to get rid of as much of the outside stress as possible before starting chemotherapy. We discussed a schedule and decided I will start the 4 1/2 month chemotherapy treatment on June 23. It will be 6 rounds - one every 3 weeks. Before then there are a few tests I need to do. The first was a bone scan which I did today. I went to the radiology department at Thornton Hospital at noon and received an injection of some kind of dye in my arm. I didn't feel a thing! The needle guy and I got along since his birthday was the same as mine and we both expressed disappointment that the only famous person we share our day with is Ricky Schroeder. After the injection I was dismissed for 3 hours, so I came home and worked on golf tournament stuff. Then it was back to the hospital for the scan. I laid on my back on a very skinny table (I got to keep my clothes on). My birthday buddy strapped me to the table with a long velcro belt and rubber banded my feet together so I couldn't move. I had to stay perfectly still for 20 minutes. Well the more I thought about staying still the more I wanted to move. I developed a itch on my nose that got worse the more I thought about it. But I was a good girl and didn't move. The table I was on moved inside a big cylinder. I was just laying there wishing there was something to look at when I realized I was moving out of the machine very slowly. At first I wasn't even sure I was moving, but then slowly I noticed the lines on the top of the machine were in different places and eventually my head came out of the machine. There were photos of clouds on the ceiling so I spent the next 15 minutes visualizing shapes in the clouds. There was one shaped like a heart and another like a mean hippo with his mouth wide open to eat another cloud.

Tomorrow I have an echocardiogram. On Wednesday I have my second post-surgery appointment. On Friday I will learn about the port placement which will happen next week (basically they'll cut open my neck and insert a catheter into one of my veins, then cut open my chest and implant a chemo port and connect it to the vein catheter and then send me home to pretend like everything's fine) But that's a week away, so I'll worry about that later. I'm also going wig shopping on Friday! I already bought a few hats, a sequined scarf and extra long hat hair (a wig without a top that straps across your head that you wear under a hat). It's been fun playing so far, but it's not real yet...

On the foob front, I wore a bathing suit top in my backyard and it hid most of my scabbing/scarring. There is really no hiding the scars from the drains on my side in any bathing suit. I disobeyed doctor's orders and walked up the Torrey Pines hill and did the beach trail. I got my heart rate up and was all sweaty and was so happy to finally be moving! The doctor said to wait 6 weeks and I waited 5 weeks and 2 days. So sue me. I never claimed to be a good patient!

May 29

I decided to take some time off from being a cancer patient. In the past 2 weeks I've had countless calls from doctors and labs to schedule the numerous tests I'll need to prove I'm strong enough to survive chemotherapy. I've put off every one until after my next appointment with my oncologist on Tuesday. I think I've frustrated the entire oncology department at UCSD because they have resorted to calling my mom to see if she'll bring me in. Thanks for having my back mom! I anticipate a bit of lecturing at my next appointment, but it has been worth it. I feel that I have to go into chemotherapy not only physically strong, but mentally prepared as well. I can't carry all my stress into my treatment or I will have a harder time tolerating the drugs. So, I've been able to focus on resolving several issues and feel like huge weights have been lifted off my shoulders. Now, I'm ready to have my bones scanned, my heart echocardiogrammed, and my emotions validated by the social worker. I still have lots of questions about the treatment and how it will affect my daily life. I'm hoping to have a very clear picture of what the next 4 months will bring after Tuesday's appointment.

In foob news, I went back to bra stuffing 101 and discovered that a $38 silicone insert can easily be replaced by 50 cents of worth of cotton balls to keep the right bra cup from collapsing. I have an idea to place a handful of organic cotton balls in a pretty pink hemp drawstring bag and sell it in the Nordstrom lingerie department as a green breast prosthesis. Environmentally friendly and practical! What mastectomy shopper could resist?

Have a wonderful Memorial Weekend!

Foob Fun

So I've been taking photos every 5 days or so for the foob scrapbook and am amazed at how fast my body is healing. All of my bruising is gone and the only scabbing left is on my incision and the nipple area. (I'm still hoping there really is a nipple under there). Both of my drains have been removed and those incisions are healing up too. I do still have a good amount of swelling on my side next to the foob, but am being told it's all normal and will eventually subside. Not one to sit and wait, I've started receiving lymph massages to stimulate the lymph system and hopefully get some of the extra fluid/swelling/crud to work its way out. I slept on my side last night for the first time since surgery - I was afraid to with the drains in - and this morning everything was where I left it last night. Progress! Even with the healing going so well, there are some odd things to get used to. I still don't have much feeling from my armpit (totally numb) to my elbow (kind of numb) or on my side next to the foob. I don't have anywhere near a full range of motion with my right arm either even though I am doing my assigned exercises almost every day. One weird thing I've noticed is that when I drink hot or cold drinks I can really feel them heading down through my chest - it's almost uncomfortable - and I think it's because there is no fat or breast tissue for insulation any more. Or it could all be in my head... Dressing with the foob is still not an easy task. My left breast is at least 1 cup size bigger than the foob, but the foob nipple is 1" higher than the real breast (I know because I was left home alone with a tape measure). A regular bra fits the left side fine, but the cup collapses on the right (and yes, I've tried the silicone bra stuffers but it tried to escape from the bra and then I had 3 breasts) A sports bra supports the left side, but is very tight around the swelling next to the foob so it's not very comfortable. I've resorted to wearing tank tops with built-in bra shelves. There is some support for the left side and it's comfortable to wear. The only issue is there's no hiding the size/height discrepancy. I have kind of a diagonal cleavage thing going on. Oh well, it's only temporary. That's my new motto by the way. It's only temporary. The lopsided foob, the chemo, the hair loss, it's all temporary. I haven't found the humor in chemotherapy yet, but the foob is pretty entertaining.

On the chemo front, I'm still waiting to hear back from the 2nd oncologist before any final decision is made. I'm researching wig/hair options just in case and have discovered a whole new world I never knew existed. Did you know you can buy eyebrows made of human hair that will stay glued to your face for 2-3 weeks? Fascinating! Maybe I can adjust them to look suprised or angry all day. "What's she so mad about?" "Oh, she's not mad, it's just her fakebrows." The fun potential is endless!

Chemotherapy & Herceptin

My appointment with the oncologist was moved up, so I met with Dr. Schwab at UCSD yesterday. I was expecting to hear that my diagnosis without chemo was an 80-90% survival rate and with chemo it would improve to 90-95%. I was expecting to learn about my options and be able to mull it over and make a choice about what to do. Instead I learned that my cancer is HER-2 positive, which means it is very aggressive and that without chemo I am facing a 50% chance of cancer recurring within the next few years. The oncologist said this type of cancer commonly recurs in the brain or bones. With chemo the chance of the cancer returning is reduced to 10-15%. Hearing that I have a 50% of getting brain cancer within 3-5 years scared the crap out of me. And lucky me, the cancer is also ER positive (estrogen receptive) so I would also need to do hormone treatment to reduce the amount of estrogen in my body. Only 10% of cancer is both HER-2 and ER positive. Lucky me! I am sending my pathology report to at least one more oncologist for a second opinion, but am feeling pretty pessimistic. The remainder of my appointment was spent discussing the type of chemo that is best for me, side effects of the drugs, and resources available at UCSD. The doctor recommended I take Herceptin - a drug for HER-2 positive cancer. This is given intravenously every 3 weeks for a year. I would have a port placed under my skin where the drug would be administered. Then there are 2 types of chemo that would work for me. One is 8 rounds (every 3 weeks for 24 weeks) and easier to tolerate. The other is 6 rounds (every 3 weeks for 18 weeks) but harder to tolerate. Both are aggressive drugs with the usual side effects including hair loss.

It's a lot to deal with right now. I've gone from believing I'm 100% cancer free to hearing a 50% chance of fatal cancer. The doctor said this type of cancer would have killed me 10 years ago. It's so weird to think how someone who hasn't even had a cavity can receive this diagnosis. So I'm worried (it's what I do...) I'm worried about how the kids will react, how I'll be able to take care of the kids if (when) I'm sick from chemo, what I'll look like bald, if I can handle starting school in Sept, how I can get a job, and if I can make all the home Chargers games (priorities people!) Suddenly the size of the scars from my surgery doesn't seem like such a big deal. And my reconstruction is postponed until after the chemotherapy. My poor kids - most are embarrassed that their mom wears dorky jeans - mine have a bald, lopsided, dorky jean wearing mother. I know I've often commented on the pride I take in embarrassing my boys, but I'm going to stop the uncool good-bye kisses and public singing until this is done to save them some dignity.

Next steps? Well, I've cried more in the past 2 days than I have in a long time, so I'm hoping that's over. I need to talk with the the 2nd oncologist before anything else. Assuming this diagnosis and treatment is correct, I'll need to have a bone scan, a few heart tests, have a port for the drugs implanted, be fitted for a wig and meet with a UCSD social worker before the chemo starts. I'll be spending a significant amount of time at UCSD over the next few weeks.

On a positive note, my last drain will be removed on Monday - 18 days of drain wearing will be complete!

Not-So-Good Pathology Report

Writing about boobs and foobs is much more fun that writing about cancer. But unfortunately, just when it looked like my cancer writing days were over my doctor called with my pathology report from surgery. My DCIS (ductal carcinoma in situ - all cancer contained in the ducts) progressed to also be invasive. They found a 1.5 cm tumor in the breast tissue as well as tumor cells in the lymph node they removed. I have an appointment on Monday with a medical oncologist to learn about the recommended course of treatment. My surgeon said it will most likely consist of chemo and tamoxifen (estrogen reducing drug). I'm really disappointed and back to feeling overwhelmed by the diagnosis. I've met enough people who have been through this to know that chemo is not easy and I am worried about how the kids will react. They've been through a lot this year and deserve a carefree summer of beach days and water sliding. I'm trying not to freak out until I have more information on Monday.

On a positive note, one drain is much more comfortable than 2 and much easier to dress. I almost feel like a normal person again - very lopsided, but normal :) It looks like I'll be able to have my remaining drain removed tomorrow or Monday. That will be heaven!

My Post-Op Appointment

I went to my 1st post-surgical appointment today. I didn't get all my questions answered, but it was a good appointment. The good news is 1. I can drive again!, 2. 1 of my drains was removed, and 3. my foob is healing as expected. I was VERY excited to have a drain removed, until I got home and realized the drain with the most fluid was the one that was removed. I called the doctor's office and was told it doesn't matter which drain was removed and that any excess fluid would be removed by the remaining drain. That makes no sense to me since the drain tubes are pulling from different places in my body and I need to track the amount of fluid drained by drain number. The drains are removed when the fluid removed gets to a low number. So if drain #1 is draining 10ml/day and drain #2 is draining 40 ml/day, drain #1 should be removed. But in my case, the drain with the most fluid was removed. I am nauseous with worry over it. I'll feel better tomorrow if I don't wake up leaking gross whatever kind of fluid is draining from the incision where the drain was removed. So the removal of the drain is kind of a bitter sweet thing right now. I do feel better about how the foob is looking. I mentioned in a previous post that I was worried about the nipple surviving and the doc said it looks great and could look worse before it gets better. I'm not sure how that's possible, but she's board certified and I'm not, so I guess I'll trust her.

On the not-so-great news side, I've gained 4 lbs since surgery. It's either because you all keep sending me such yummy food or this expander implant weighs way more than I thought. I'm hoping it's the implant, but asked about exercise just in case. I was told no exercise for 6 weeks. 6 weeks! Not even walking Torrey Pines because that will increase my heart rate and increased heart rates are bad for wound healing. It's bad enough for bikini season that my chest is completely lopsided, but now I'll have a fat ass to go with it. I guess I'll be lounging at the Children's Pool with the seals - I've heard hanging with seals make you look thinner.

The other bummer part of the appointment is that the pathology report was not back yet. I still don't know if the cancer is estrogen receptive or how aggressive it was or if it was invasive at all. So I don't have any idea yet about additional treatment.

I'm scheduled to go back for another appointment in a month. Assuming that everything is healed as expected, they'll fill my expander a bit more and I'll be one step closer to completing reconstruction. Before then, I'll have my remaining drain removed and learn about the pathology report. Thanks for all of your support!

9 days after surgery

I can't believe it's already been 9 days since surgery. Some things I am pleased about and some things are pretty frustrating. First the good news. Mom and I are continuing to live together mostly harmoniously 24/7. On Mothers Day Eve, I have to say, there is no way my recovery would have been this easy without her. She is part nurse, part babysitter, part cook, part chauffeur - she has been amazing! Also on the good news front, I've gone 2 days without pain meds. I still have some stiffness and an occasional shooting pain, but nothing so uncomfortable that I need to medicate. The discoloration and bruising is subsiding a bit. My foob looks like it was hit with a baseball bat rather than something from alien, so that's good right? (I cannot take credit for the word "foob" - it is a commonly used term among mastectomy gals with warped senses of humor). Another plus is that I am not as tired as I was a few days ago. I have much more energy, have walked to school and back, been to birthday parties and baseball games and even skipped my nap today.

On the frustrating side, I cannot complain enough about these damn drains hanging from my body. They won't be removed until they are draining less than 10 ml a day. Unless there is a sudden, dramatic reduction in fluids being drained, I will probably be wearing these things to opening day at the track. One of the drains is still pulling 60 mls a day. Ugh! I sat on the drain tubes as I was getting out of the car yesterday and one tube got caught on a kitchen drawer pull. Both times I could feel the stitches and tubes being ripped from my body. I was not happy. I can feel where the drains are attached to my skin all the time because they are located exactly where every bra I own crosses my body - even my new super stylish surgical bra. Plus, they are a nightmare to dress. Yes, I could wear XL t-shirts every day (and have been most days) but I am too vain to wear these in public very often. Plus after the great closet-cleanse of 2009, I only have 3 left (USD, Chargers, and a bar in Bozeman where Chris worked).

My post-op appointment is Monday afternoon. I am hoping for good news about the cancer pathology report and suggestions for further treatment (none!) and to hear that the foob is healing as expected. I won't gross you out with the details, but I have become a teensy bit worried about the nipple surviving. I am hoping my doctor will allow me to drive and will give me a timeline for the remainder of my reconstruction. And if she removes the drains I will not complain :)

You have all continued to be such amazing friends - thank you for all of your support, encouragement, and gentle hugs. I'm wishing everyone a happy and healthy mother's day!

My big day

I saw the boys on Saturday for about 10 minutes when I came home from the hospital. Jake took one look at my drains and asked, "Are you wearing those to my school?" So I knew then that at school pick-up Monday at 2:30 I needed to be looking and acting as normal as possible - surgery or not. That motivated my big day today. I haven't wanted to unwrap the bandages for fear of the wounds they were protecting. But I needed a shower to go to school today, so unwrap I did. I made sure to sit down before looking and I'm glad I did. The surgeon removed my cancer and breast tissue and replaced it with something from Alien. My foob looks like nothing human I've ever seen. On my side under my arm are 2 small incisions where the drain tubes are sprouting from my body. This was too much for my brain to wrap around so I wrapped an ace bandage around my body to hide those. That was a great idea since it gave me something to attach my drains to while I showered. So, I managed to wash all human and alien parts, dry my hair and get dressed in normal clothes. I was then exhausted and needed a nap. Good friends brought lunch and I sat outside and ate with them. So fun and nice to enjoy the beautiful day. After lunch it was time to pick up the boys. I thought I'd be ok walking to school, but was overruled by mom. So we drove to school and I walked from the car to the school gate. Mom was right to overrule my walk because just standing there waiting for Jake I felt light-headed. I got to see lots of friends at school and Jake had a big smile when he saw me. Totally worth the effort! Then we drove to Ryan's school and I waited in the car. With both boys in the car we went to Starbucks for an after school donut. I walked from the car to the Starbucks counter then outside to sit in the sun. While sitting there, Jake said it was good thing I wore a black shirt because it hid my "things" (drains). It made me happy that he was comfortable. Then we came back home and yes, I took another nap.

Thank you so much to all the friends who have brought food and sent cards and gifts. I am so lucky to have such an amazing community around me. For now, I'm going to rest on the couch and tomorrow I plan to walk from my bed to the couch and back. I'm beat!

Surgery

Here's a recap of the past few days... Thursday at 11:30 mom and I checked into the hospital. If you ever need a hospital, this is the place to be. Wood and marble floors, a piano player in the atrium, lots of light & windows, room service and HBO. Thornton Hospital looks more like a hotel than a hospital. It's fantastic. So, we checked in then went to radiology for my dye injection in preparation for the sentinel node biopsy. I was expecting a giant needle, but instead received 4 small injections around the nipple. This burned terribly for about 15 seconds and then was done. No big deal at all. After 15 minutes I went into a big round camera thing - kind of like an mri machine, but much shorter. The technicians were able to see the dye in my body and see the 1st lymph node, so they printed 3 photos and sent me to pre-op.

At pre-op I was in bed #8. The nurse took my vitals and I got into a hospital gown. The doctor came in and drew a map on me. I signed some papers. I managed to hold it together until the nurse was putting in my IV. Then everything became real and I started to cry. After the IV it was time for the nerve block to be administered by the anaesthesiologist. I had to sit on the side of the bed and receive 4 injections into the right side of my back. This would block the pain during and after surgery. I cried my way through this process - first because I was already crying and second because this hurt like like hell! Man did that hurt. So with crumpled tissue in hand, I was then wheeled into the operating room. A nurse injected "a margarita" into my IV. I vaguely remember seeing the operating room.

Next I remember opening my eyes and seeing the clock read 5:00. Then I remember a clock saying 6:00 and wondering why I couldn't keep my eyes open. A nurse took my vitals, told me I was out of surgery and that I could go to my room. I was wheeled on my bed through the hospital, met up with mom and dad on the way and was admitted into my room. Mom told me she had talked with my doctor and that the surgery went well and that my lymph nodes were clear. That was great news that was overshadowed by my hunger. I was starving! So I ate some lemon jello (yuck) and some apple juice. When the nurse checked my drains she noticed some bleeding. Actually she noticed that my hospital gown, dressings and bedding were all soaked with blood. I was bleeding from one of the drain sites. Apparently this is not a good thing, so the doctor was called and I was cleaned up with new dressings. The doctor said if the bleeding didn't stop I'd need to go back into the operating room so they could find the cause of the bleeding and stop it. I was watched pretty closely for a while and thankfully the bleeding subsided. The real bummer was that I was no longer allowed to eat or drink because of the chance I'd be back in surgery. Plus, with the darn IV in my arm, I had to pee every 45 minutes. This was a process, because I had to turn off and disconnect my leg squeezers (big blood pressure cuffs that squeezed my legs to prevent blood clotting), get out of bed using only 1 arm, and wheel my IV into the bathroom. By the time I got back into bed and was reconnected to the leg squeezers, I had about 30 minutes before the whole process started again. Very annoying. My mom spent the night at the hospital with me. Even though I could have come home on Friday, we decided to stay another night just in case the bleeding thing started up again.

Friday in the hospital was good. I got some sleep, got to eat, got off the IV and the pain wasn't too bad. The nerve block has not yet completely worn off, so I feel stiffness and bruises, but nothing unbearable. The pain is much better than I thought it would be. I'm home now. The worst part now are the two lovely grenade-looking drains hanging from my body. They are disgusting, heavy, and in the way. It is nearly impossible to disguise them with any clothing.

So, right now, I'm home, cancer-free, and relatively comfortable. I'm sleeping a lot and mom's not really letting me move. I'm trying to be a good patient. I have not yet opened my bandages to see the wounds or my new foob (fake boob). That will be an entirely new blog! Thank you so much for all of your prayers and notes. I feel very supported and loved and am very thankful for all of you!

Surgery Update April 29

OK, the latest news you have been waiting for. Kristin's Surgery today was completely successful. We were with her until she was taken to the OR about 3PM and she was moved from recovery to a room at about 7PM. The doctor told us after the surgery that they found NO cancer in the Lymph nodes and that Kristin handled the surgery well.
We just left her and while she is a little sore and still a might groggy, she is in good spirits and wanted me to make sure I thank all of you for your support, thoughts and most of all, your prayers. We expect Kristin to be going home either Friday night or Saturday at which time she will update this blog.

Kristin's Mom and Dad

April 28

"How are you?" seems to be the popular question this week. I think I am as surprised as you that I am doing great. I am a little anxious to get the surgery done, but am not exhibiting any of my normal signs of stress - fistfuls of chocolate, screaming at my children, and weeping at reality tv. I need to finish a little bit of laundry and pack a bag for the hospital and then I'm ready to go. I've decided to graze on food all day, since I won't be able to eat past midnight for the surgery that doesn't start until 3:30 (have I complained about this before?). The kids and I are going to out to dinner. At 11:30 tonight, I'll be finishing my bottle of Jose Cuervo Classic Lime Margaritas - there's only 1 or 2 drinks left - probably with a grilled cheese sandwich. I'm still deciding on the appropriate snack for my last night as a bimammary being (not sure if it's a real word, but sounds kind of scientific).

Tomorrow, I'll have a normal morning and then head to the hospital around 11:00. I'm planning to have my phone with me, but not to use it until the pain meds have been reduced and my brain is clearly functioning. Just in case my phone eludes my mother's watchful eye and you receive a text or email from me, please know that anything said under pain medication is not to be taken seriously. I do not think anyone has ugly children, I am not in love with any of you, and I think any requests for the delivery of margaritas or underwear models should wait until after my drains are removed.

Thank you for all of your support, prayers, and well wishes. I know tomorrow is going to be a long day, but that I'll wake up from surgery cancer free. And I have an amazing list of family and friends who will see to it that my recovery is as easy as possible. Keep your prayers coming for healthy lymph nodes for one more day! Thank you.

Nipple Notes

Since some of you have been asking, here's what I know about the nipple-sparing mastectomy. It is a fairly new procedure in the U.S. and is gaining popularity. The accepted view is that since the nipple and areola are connected to the duct system they need to be removed since they could be cancerous. Also, when nipples are left on after mastectomy, there is a high rate of tissue death due to inadequate blood flow. During the procedure, the incision is made right under or right over the areola, the breast tissue is removed and the skin (including the nipple & areola) are inverted and scraped to ensure all breast tissue is removed. The blood vessels need to be reestablished to keep the skin alive and this is helped by having the chest muscle pushed up to the skin with the expander. None of the other doctors I visited before Dr. Wallace would offer this procedure for me. Either it was not a procedure they were comfortable with or they said the risk of leaving cancer behind in the nipple was too great. Dr. Wallace has been performing nipple-sparing mastectomies for 2 years and has one of the highest success rates in the world. Is there a chance that the remaining nipple will be cancerous. Yes - about 1 percent. And if it is cancerous, then the solution is to remove it. So, on the rare chance that there is cancer after my mastectomy, I will just have the nipple and areola removed and proceed with the tattoo/reconstruction options I've written about before. There is also a 15 percent chance that not all the nipple/areola tissue will survive. In that case, Dr. Wallace has said it is better to have some of the tissue because she can use it to reconstruct a more real looking nipple area during my cosmetic reconstruction. So I really see no downside to the nipple-sparing procedure. If I can wake up from surgery and look whole I really think it will help my recovery. And if the tissue doesn't survive, or cancer remains I'll deal with it then. As for now, I'm excited to be able to have this option. In one post I've managed to mention nipples 11 times - I think that's a record!

Pre-Op Appointments

Today I had 2 pre-op appointments - one with Dr. Wallace and the other with the anesthesiologist. Everything is set for next Thursday's surgery. The time of the surgery has been pushed back, so I don't even have to check in at the hospital until 11:30 for a 3:30 surgery. I'm a bit annoyed at that, not because of the delay in surgery, but because they didn't change the time I need to stop eating. No eating after midnight on Wednesday - not even gum. How cranky will I be going into surgery without my daily Snapple and M&Ms? I did get permission to take Tylenol PM that night though, so at least I'll be able to sleep. I received my pre-op instructions and some are pretty funny. - like "your copay is required on the day of surgery. We accept cash, check or credit card" That itself isn't funny until you read the next instruction, "Please leave valuables at home, including credit cards and money (except your co payment)" I find it scary that patients need to be advised to shower or bathe before coming to the hospital and to arrange for an adult to drive you home. If I need to share a hospital room with another patient, please let it be with someone who has followed the bathing instructions!

The surgery schedule is still the same - check in, go to radiology to get injected with dye for the sentinel lymph node biopsy, wait, then surgery. I did learn that the dye is injected at the nipple - no that doesn't sound painful at all! For the surgery, Dr. Wallace will decide where to make the incisions that day. Basically she'll wait until I'm unconscious and topless and poll the surgical team for their opinions on the best places to hide a scar. Not really, but she will decide the best places to make the incisions on surgery day based on the type of reconstruction necessary (lift, no lift, etc) The best news was that I will be able to shower after the 2nd day! I'm a grump without my shower, so this makes me and my caretakers very happy!

Also go0d news is that I get to go Nordstrom and buy lingerie paid for by the insurance company. The lovely post-surgical camisole seen here has interior pockets to place the 2 drains I'll have hanging from my body (one under my arm and one under the missing breast) and built-in breast forms so I won't look so lopsided. Who knew such an ingenious garment existed? Now if it only came in red...

I met a current patient who had a bilateral mastectomy a few months ago. She was very reassuring and said the whole thing was a piece of cake. She also said that I should milk the entire experience for all I can get. I really liked her :)

So, with all the pre-op stuff out of the way, the only thing left to do is worry (and shop for lingerie). I've gotten pretty good at the worrying part, so let the countdown to surgery begin!

Finally a Date!

It might sound crazy to be excited about a surgery date, but I've been waiting for so long that I really am excited to put a date on the calendar. My surgery is scheduled for Thursday, April 29. I'll check in at 9:30 am and go to radiology to be injected with dye for the sentinel node biopsy. The actual surgery won't start until 1:00. I'll spend the night at Thornton Hospital and assuming everything is fine, I'll go home the next day. Before surgery, I have a pre-op appointment to go over the surgery details and an appointment with the anesthesiologist. I'll keep you posted on how those go. I see a light at the end of the tunnel and it's getting brighter!

No Mutated Genes!

My test for the breast cancer genes, BRCA-1 and BRCA-2, came back negative (no mutations detected). That means my chances of getting breast cancer in my left breast or ovarian cancer are the same as everyone else. That also means no mastectomy on the left side.

Nuclear Boobs

I have a 3-ring binder (thanks for the great suggestion K2!) to keep all of my cancer info - doctor's contacts, insurance info, notes, bills, etc. I keep this photo of the nuclear boobs on the front. I do get some strange looks when I bring it into a doctor's office. At least it's not the night version with the flashing red lights on top. If you're interested in other breast-shaped architecture, check out the following site from Environmental Graffiti. Maybe my new boobs will inspire a great building - maybe even a new Chargers stadium? A girl can dream...

UCSD Cancer Center

It's official... I changed my primary care provider to UCSD so I can be treated there. I could only make the change on the 1st of the month, so it's been frustrating to wait. I received my new insurance card in the mail today, so on Thursday I'll officially be a patient at UCSD. My doctor there is Anne Wallace. She is the Director of the Breast Care Unit specializing in breast cancer surgery and reconstruction. She's Board certified by both the American Board of Surgery and the American Board of Plastic Surgery. That means I'll have the same surgeon for both the mastectomy and reconstruction. I like that idea. She is recommending a nipple-sparing mastectomy with immediate reconstruction with an expander. Basically, a temporary inflatable implant will be placed behind my chest muscle at the same time as the mastectomy. Over the next few months, it will be incrementally filled with saline to expand the muscle to look like breast tissue and fit a larger implant. Once it has been expanded to the correct size I'll have another surgery to remove the expander and replace it with a regular implant. I think at that time I'll also have whatever surgery is needed on the left to make things more symmetrical (I'm still leaning towards not removing the left breast). Now I'm just waiting for a date. Dr. Wallace and her staff are on vacation until April 5, so I have to wait until then to schedule my surgery. A week seems like forever, but what choice do I have? I should also receive the results from the BRCA gene testing this week. So for now, I'm just waiting...

I also wanted to say thank you to all of you who have reached out to me. I've received so many encouraging and supportive emails, phone calls, cards and gifts that I am overwhelmed! I know I have amazing friends and family but your support has been more than I could have imagined and I am forever thankful. There is no way I can feel alone, depressed or scared with all of you in my corner with me! Thank you!

Things are finally going my way

Met a doctor I liked that my insurance will cover who was actually on time for the appointment! How cool is that?

Doctors, Doctors, Doctors

Yesterday I met with 2 more doctors - a 2nd oncologist and a plastic surgeon. The oncologist was great - very personable and he lives around the corner from me. He basically told me the same things as Dr. Link (the OC oncologist) and said that he was pretty sure that the cancer is not in the lymph nodes nor is it invasive. He ordered a blood test to see if I have the BRCA1 and BRCA2 genes (gene mutations that greatly increase your chances of getting breast and ovarian cancer). My blood is on it's way to the lab in Salt Lake City to be analyzed. If I test positive for the genes, then I will definitely have the left breast removed too (the cancer free side) and look into getting my ovaries removed. But, that's a whole different blog...

The plastic surgeon appointment was good as well. I'm not sure what makes surgeon's time more valuable than mine, but apparently it is. I've waited an hour past my appointment time for every surgical appointment I've had. I liked this doctor though. We talked at length about the pros and cons of removing the left breast (non-cancer side). The pros are 1. not having to worry about getting cancer in that breast, 2. not having to test that breast for cancer (regular mammograms) and 3. a more symmetrical cosmetic outcome (the left breast will match the right). The cons are removing a perfectly good body part that I kind of like. There is an option to insert an implant on the left side to make it look more like the reconstructed right breast (apparently it's difficult to make reconstructed breasts look like they've nursed 2 kids and lost the fight with gravity) As for the right side, (cancer filled, must be removed - If you're uncomfortable reading about female body parts, you should now skip to the end of this post...) he suggested making a small incision right below the areola where the breast tissue can be removed and the implant added. The nipple will be removed, but sounds like the areola can stay. (If the areola is removed, a new fake one is created with a tattoo. I've always wanted a tattoo, but not of an areola...) He showed me some photos of previous patients who have had the same procedure - the scarring was minimal and the breasts looked real - what more can I ask for?

Next week I'm meeting one more surgeon and then I'll start to make some decisions. Hopefully, I'll have news of a surgery date by the end of the month. Until then keep praying for healthy lymph nodes!

Oncologist Appointment

When one of the world's leading oncologists specializing in breast cancer is located an hour away, of course you make an appointment. I spent an hour with Dr. John Link today and feel good about our discussion. Dr. Link wrote The Breast Cancer Survival Manual (which I've read cover to cover twice), and what he says is all that counts. He reviewed all of my tests and agreed that yes, there is extensive ductal carcinoma and that it does also look like it has become invasive. However, he thinks the invasive tumor is about 10 mm, so very tiny. He looked at my 2007 ultrasound and agreed that it did not show any cancer and that yes the next step should have been a mammogram, but since I don't own a working time machine I'll quit complaining... He said that most likely the cancer has been there 3-4 years. That made me feel better because recently I've been torturing myself with thoughts of nursing my children with cancer-filled milk. He assured me this was not the case. (I'm a good mom again!) He also reassured me that I don't have an increased chance of growing other types of cancer just because I have breast cancer now. (Yippee!) He suggested I have my surgery within the next 2-3 weeks. So, as soon as I get this insurance / medical group nightmare cleared up I'll be ready to go. There's also a cool new test I'm going to get called Mammaprint that tests the cancer cells and analyzes 70 genes. I think the most common test analyzes 29 genes. This means I'll have the best analysis available of my risk of recurrence and be able to completely customize my post-surgical treatment (if needed). I'm still praying for healthy lymph nodes and would love if you would too!

March 14

Ok, the pity party's over. (I told you it wouldn't last long.) All the negative feelings have been fixed by a perfectly sunny day, sitting and reading a 12" stack of trashy magazines, and a yummy Stabucks dark cherry mocha with red velvet cupcake. Seriously, it doesn't get much better. Looking forward to meeting some new doctors this week and hopefully being able to get my surgery scheduled soon!

I'm angry.

So you know how I’ve had such a great attitude about the cancer? Not today. Today I’m angry. I’m angry that 2 years ago I knew something was wrong but that when the doctors told me I was fine I believed them because they told me what I wanted to hear. I’m angry about the amount of information that was not explained to me. Two years ago I was 36, a non-smoker, physically active, with no cancer of any type in my family. I was not considered a cancer risk - Only 5-7% of all breast cancer occurs in women under age 40. But I had found a lump that was not there before and I knew that was not right. My doctor sent me for an ultrasound - it came back clear. I was told the lump probably was fibrocystic or due to hormonal changes. I didn’t know then that ultrasounds are not good at detecting ductal cancer and that 80% of cancer in the milk ducts are found by mammograms. If I had done a mammogram then it would have show calcifications that are an indication of ductal carcinoma. But I didn’t know to ask for a mammogram. At my annual exam a month later the lump was still there. The doctor referred to the earlier ultrasound and said it was fine. A year later, I went again for my annual exam. The lump was still there. The doctor referred to my earlier ultrasound and said it was fine. In December I went again for my annual exam. This time the doctor said the lump probably should not still be there and did a needle aspiration to try to get fluid from the lump. She was not able to extract any fluid which she said was good. So for 2 years I was told the lump was nothing to worry about and after the needle aspiration was told no liquid was also a good sign. By then I’d been living with the lump for so long I no longer worried about it. The doctor sent me for an ultrasound and mammogram. The ultrasound again came back fine. The mammogram showed calcifications and I was told they could mean a pre-cancerous condition. Pre cancer doesn’t sound very scary – it’s not cancer, right? It’s pre-cancer. I figured at the worst, a 2-year old pre-cancerous lump could probably be easily removed. I was then sent for a MRI and was again told it was likely I had a pre-cancerous condition and a biopsy was recommended. I had a stereotactic biopsy where an incision is made in the breast and a vacuum needle is used to extract tissue. My incision was made a good 2” above the nipple. I didn’t ask where the incision would be made or why it would be made there. I didn’t know anything about biopsies. I now know that not only do the incisions from these tests leave scars, but that if the test shows you have cancer the skin around the incision area needs to be removed along with the infected breast tissue. I have since learned that you can request your breast biopsy incision be made close to the nipple to hide scarring and that some hospitals have adopted this as a normal treatment. I didn’t know to request that. The biopsy report says DCIS – cancer inside the milk ducts (still considered pre-cancerous since it has not yet spread). My treatment is a mastectomy. So I’m angry that a condition innocently called pre-cancerous requires the complete removal of my breast. I’m angry that even if my mastectomy is done by the very best surgeons so there won’t be any visible scarring, I will still have a scar from the biopsy and the removal of the surrounding skin. I’m angry that I didn’t push for another opinion 2 years ago when I knew in my gut that something was wrong. I’m frustrated with my insurance company. Mostly I guess I’m just angry that cancer is happening to me. In fact I’m pretty pissed about it. My good attitude will be back tomorrow, but for today I’m too angry to care.

The Good, The Bad & The Beautiful

Got a 2nd opinion today from a doctor who reviewed all of my radiology and pathology tests. The good news is that there definitely is no cancer in my left breast. Not even a speck. The bad news is that it looks pretty good that the cancer in the right breast has escaped the ducts and is starting to be invasive. My "extensive DCIS" has outgrown the ducts and is trying to spread. Either way, it doesn't change the original recommendation for a mastectomy to remove the cancer. What may change is the treatment after surgery - radiation and/or chemo will be recommended if the cancer is invasive and in the lymph nodes. So keep your fingers crossed that the cancer bugs haven't been able to get very far!

I met another angel today - another breast cancer survivor (apparently that's what anyone who has had breast cancer is called) who offered lots of advice and encouragement and even showed me her reconstructed breasts. I am in awe of the number of women who are willing to not only meet with me and give me advice about dealing with breast cancer but who are willing and even eager to show me their new boobs. My neighbors must be wondering what the heck is going on over here with the number of topless women hanging out in my kitchen. And I'm wondering if this is a practice reserved for breast cancer or if this is common to all cancers. Do men take their pants off in their garages to share their testicular cancer scars? Anyway, seeing the bare breasts have made me feel very reassured that my scars will not resemble Frankenstein's and that I could even come out of the surgery looking better than I do now. One angel even told me that next year I will be the one flashing my breasts in someone else's kitchen (I assume she meant without drinking excessively). Maybe, but in the meantime I'm thinking about investing in some mardi gras beads just in case more survivors come knocking on my door.

Research

I now feel like I know more about mastectomies than anyone should ever need to know. I've learned you should never google mastectomy photos, and that there are different types of mastectomy surgeries. They all involve removing breast tissue, but differ as to where the cuts are made (and where your scars will be) and the amount of skin being removed. None seem like very exciting options. Then there are even more options for reconstruction. I have an appointment with a surgeon tomorrow so I'm hoping to learn what types of procedures will work for me and my type of cancer. And for anyone keeping track, this is day 13 with a pretty hole on my chest from the biopsy. Keep praying for healthy lymph nodes!

DCIS

After a needle biopsy, 2 ultrasounds, a mammogram, an MRI and a stereotactic biopsy, I still thought my doctor was just being overly cautious. Until his office called my house at 7:00am to set an appointment for that day. That's never a good sign. By 11:30 I had heard the news - breast cancer. He said I have Ductal Carcinoma In Situ or DCIS for short. I guess if you have to get breast cancer, this is the cancer to get. It means all the cancer is contained in the milk ducts in my breast and has not yet spread to any other tissue. It can be "cured" with a mastectomy. No radiation, no chemo.

I've spent the weekend trying to educate myself and gather as much information as I can. Most importantly, I met with 2 angels - Clare and Karen - both have had the same diagnosis as me and were able to reduce my fear level from terrified to anxious. I can't tell you how much I appreciate you both spending time with me!

My plan right now is to get a second opinion (just to be sure) on the diagnosis and treatment and to meet with oncologists, cancer surgeons and plastic surgeons until I find the best team to cure me.

So far I'm doing fine and plan to approach this as an unconventional way to get my boobs done. I'll keep you posted on my progress. For now you can all pray for healthy lymph nodes (I need those to avoid chemo).