ONE MORE MONKEY JUMPING ON THE BED...

Chemo #7-- check.
You may remeber my "8 Little Monkeys" blog title after my first chemo. Apparently, however, I didn't, because Carol and her sister Colleen kept giving me all these stuffed monkeys with numbers on them and I had no clue why. (In my defense, I thought one of them was a dog). So now I have 7 stuffed monkeys. Rock on.
Yesterday morning before treatment I was feeling as well as I've felt in months (extra day because of memorial day-- apparently, cancer doesn't work on holidays). I called to confirm my appointment time Tues morning and was told that I was actually scheduled for the next day. Wha??!! I couldn't believe how upset I got about it. It's just so frustrating to be bopping along thinking that I have things under control and then have something so small and insignificant throw me completely for a loop. I don't really like this new freakazoid person. Ah well. It all got worked out (because, I am, afterall, my parent's daughter) so I guess the new "get what you want and take no prisoners approach" has some advantages. I felt a lot better when they ultimately told me that it was the their scheduling mistake-- Good to confirm I'm not going crazy (in that case, at least.)
I can't believe I only have one more to go. (reallyicanbuthey) Well, actually, seems more like 1.5 since I haven't felt the full brunt of the effects of this round yet, but still. I find it amusing when people say, "You're almost done! wow, has time gone by quickly!" Umm, yeah, maybe for THEM... that's ok though, time is indeed marching forward at whatever pace, and hopefully soon this middleplace will be a distant memory. (Ok, likely not distant, but a memory at least).
Some random side-effects I hadn't anticipated: although I still have some hair (including eyelashes and eyebrows (sorta), (a digression-- Every night my friend's almost-3 year old daughter prays for what she's thankful for. Her mom told me the other day that eyelashes and eyebrows have been high on her list as of late...I hear ya, sweetgirl.) sometime during the last few weeks I seem to have lost all the body fuzz I didn't really knew I had-- on my upper arms, back, face... The result of this (besides being slick and fun for jim and the boys to pet (hey, we only have fish) is that my clothes tickle. It's very odd, but not unpleasant. I wonder if this is how babies feel? Does this (at least partially) explain why they wiggle so much? Also, (and this isn't quite as fun) I've got these blisters on the bottom of toes that has let me to wrap them up in athletic tape a'la turban style. That's the chemo pedicure, I suppose. (Actually, it's probably due to the fact that I mostly wear flip flops, but I'm going to continue to blame it on chemo, so there.)

A few more things to be happy about:

• My sister Lisa is participating in the 39 mile (!!) 2-day Avon Walk for Breast Cancer June 24th and 25th. Originally, she had hoped to raise $2,000. Due to an overwhelming response she is currently less than $1,500 from her revised $10,000 goal. If you would like to read about her effort and possibly contribute, please check out her letter and/or web page.
• Remember way back when I wrote about my colleagues donating their vacation time into my sick leave bank? I recently checked in with HR to see where I stood, given the likelihood of the follow-on surgery. In any event, over the past 4 months or so I have used about 280 hours (7 weeks) and (get this) I have over 420 hours left. That means that people at my work donated over 17 weeks of their vacation to me (in at most 20 hour chunks). I can not tell you how much of a difference this has made. How lucky am I?

TACKING INTO THE WIND

"We cannot direct the wind, but we can adjust the sails." --Bertha Calloway

My reaction from the taxol treatments seem to be a few days delayed compared to the AC and involves pain from about Thurs-Sunday. On Saturday I wasn't feeling that great and as I labored to get up from the couch I lamented to Jim, "I feel like I'm 85." To which he responded, "but you only look 40." Leave it to sweet boy jim to put it all in perspective for me. :)

The past few days have involved doctors appointments with the infamous "Dr. Data" of oncology appointments past, and a plastic surgeon to try to get a handle on the path forward given the BRCA1 positive gene status. Hats off to dr. data for answering my (printed out) 29 questions patiently and in an understandable (and entertaining!) manner. He is so confident in his numbers, it's amusing. But I guess I liked what he had to say better this time (and this is a true testament to the power of the theory of relativity). According to him (and believe me I've seen different numbers) here are some of the things I've learned:

• I have a 58% chance of getting breast cancer again in my lifetime, based on the specific "jewish" gene mutation that I have (average woman ~14%)
• I have a 16% chance of getting ovarian cancer in my lifetime (average woman ~ 1.5%)
• There are very good screening techniques for catching breast cancer in the very early stages, such as digital mamomgraphy
• There are no screening techniques that would catch ovarian cancer before it was late stage
• I would not need radiation if I got surgery, because my cancer was less than 5cm and had fewer than 4 positive lymph nodes
• (This is the one I really liked) a mastecomy would be easier to recover from than the lumpectomy I already had because they wouldn't take out any more lymph nodes
• Having your ovaries removes greatly reduces the chance of breast cancer
• If I got breast cancer again, I would likely need chemotherapy again
• He thinks gene therapy will be a reality in 10-15 years (i.e., they inject you with something that "fixes" the mutation)
• This mutation primarily effects ovaries & breasts, thus men with this gene mutation have a very minor increased risk of getting cancer (good news for dad and the boys!)
• Having breast or ovarian surgery does not completely remove the risk of getting breast or ovarian cancer, but reduces it very significantly.

Tues we met with a plastic surgeon, which is right up there on the top 10 list of things I thought I would never do in my lifetime. There is apparently a big difference in wooing elective patients vs. those that are there because they have no choice. First of all, the waiting room looked like a living room out of architectural digest magazine. Next, the dr.'s exam room "table" was a leather reclining chair, and most importantly, the gown they had me change into was actually a fuzzy bath robe! I can not tell you what a difference hanging out in a bath robe vs. those paper napkin things they give you at the surgeons makes. I understand that fuzzy bath robes may be above and beyond, but why can't all dr.s offices give you a gown/robe that allows you to feel somewhat human?! but I digress...

So this plastic surgeon (who must've said "ok?" every third word, but was a nice guy, overall) gave us a glimpse into the wonderful world of breast reconstruction. It was a total "who knew?!" experience. As I have said in the past, it is truly amazing what people come up with. Anyway, (**Warning: Potential TMI!!!**) turns out there are several options. Although reconstruction is always an option down the road after a mastecomy, it's easier to do at the time of initial surgery. I had had this (wrong) idea that they somehow just lopped off your boobs, but actually, they keep a lot of the skin, and mostly just make an ellipse around the nipple and take everything out-- there are a few ways to fill the void, as it were:

One involves putting in what are called "expanders." Here I was (again wrongly) envisioning these metal expanding vegetable steamer type contraptions that would provide a sort of internal wonder woman/madonna look, but no. In reality, tissue expanders are more like balloons (although I assume not as fragile-- could you imagine Wham giving me one of his patented head butts and then POP?!) that go in under the muscle. The surgeon injects saline to "pump up" the expander and stretch the skin/muscle every few weeks over about 4 months, after which a saline or silicone implant is inserted in a follow-on surgery. He said there would be tightness and soreness for a bit after each pump-you-up injection (I'm reminded of when I was 12 and got my braces adjusted). He said the recovery from this (recovery = able to lift kids) is the same as the mastecomy-- 2-3 weeks.

The other option is called "TRAM flap"-- they take tissue from the tummy and transplant it to the breast. I call this the "belly boob". Also possible are the "back boob" and "butt boob" but these aren't really an current options. It's a tummy tuck and a boob job at the same time. This, not surprisingly, is a much more significant initial surgery than the expanders. It takes about 8 hours and involves the surgeon reattaching blood vessels through a microscope (!) Recovery time is much longer (more along the lines of 6 weeks). Advantages are that there is no implant, so it's more natural, and the TRAM flap doesn't entail all the follow on pumping up and implant surgery. Plus, it wouldn't require new implants every 15 years or so, as is potentially needed with the expander option.

With either option they do nipple reconstruction a few months after surgery. Which is a relatively easy procedure in which a new nipple is (get this) tattooed on. I had always thought I might consider getting a tattoo if I could think of the right thing to get. Who knew.

Craziness. Mostly I'm just looking at this all in a "wow, how fascinating" sense. Thank god for scientific curiosity.

So, in any event, there is a lot yet to be learned and scheduled and decided, but armed with information I'm finally ready to tack into the wind and aim back to shore. (I've switched from the train to boat metaphors.) On with the journey...

IT TAKES A VILLAGE IDIOT

Although I would like to, I can not claim credit for this blog title-- it comes from the name of a book that my mother-in-law got for me for mother's day... "It practically jumped off the shelf for you", she said (is this a good thing?). It's about a New Yorka stranded at a summer home in the Catskills. But that's how it kinda is, really-- I feel like I've been picked up and plopped in a world in which I neither understand nor fit-in, with my typical fail-safe companions (e.g., energy, good humor, good health) only in for occasional weekends. But, fear not, I am spared by the people around me, and the nutty things we come up with to amuse ourselves.
I absolutely dread going to chemo because by Monday morning I'm feeling pretty good and I so so so don't want to feel bad again. I'm a chicken. I find things to keep me from leaving the house... can't find my keys, need to get this or that-- you can pretty much see the mental fingernail marks on hardwoods. But actually being there isn't bad at all--dare I admit, fun really. Here is how it goes:
- I go back and get my vitals and Complete Blood Count (CBC) test. This only involves a stick on the finger. (which I am thrilled about every time-- I have come to hate "real" blood draws, which I don't have to get while I have my port)
- I sit back in the waiting room, until I get called into the dr. examination room
- she comes in eventually and goes through my test results (white counts ok, red counts better, but still anemic-- keep those $6k shots comin!)
-I go back out to the front, schedule my neulasta shot for the next day and next session in 2 weeks. Then I wait (again) to get called to the back. The whole preprocess is scheduled for about 30 minutes, and usually takes about 90.
-Next, I go to the back where they administer the chemo. 5 out of 6 times I've gotten a room to myself, which is nice. Michael comes in to "access my port" (how freaky sci-fi-ish is that?) This doesn't hurt much because I put lydacain on the area beforehand. Michael is a huge, quiet guy who is not quick to crack a smile. It has been my mission to charm him. I think I've finally succeeded. (Last time he asked me when I was coming back). He takes some blood samples (I've never heard anything about these, so I assume they've all turned out ok).
-The nurse comes in and gives me my pre-chemo drips. For taxol this involves steroids, benadryl, & tagamet... to reduce nausea and prevent an allergic reaction. When all this is done, she hangs the Taxol, which takes 3+ hours to infuse.
-After the infusion I get the anti-anemia shot in my belly, which I've found hurts A LOT less if I don't get it in my arm, it's room temperature, and they inject it slowly. Go figure.
Then I go home... Doesn't that sound fun?
I always read about people meeting friends who were receiving treatment at the same time. Everyone at my place seems to be 70+ and sleeping (how can people go to these things by themselves?), so this hasn't been the case for me. Luckily for me, I've brought along my own "chemo-buddies". It's been fun because I've gotten to spend one-on-one time with friends and family who I don't often see or (in the case of jim) get to talk to in a quiet setting. Everyone who has accompanied me has gone above and beyond in the "how to amuse Carolyn" department... to the point where a lady in the elevator last monday asked Meghan if she was staying the weekend because she had such a big backpack of stuff with her. Here's what was in her bag of tricks:

• A book of mad libs
• Coloring book and markers
• "It's All About Me: Personality Quizes for you and your Friends" (If our lives were movies, mine would be a comedy, Meg's would be an animated musical)
• A Latch Hook Rug
• A Playboy magazine which she purchased at the airport. Now here I must digress: if you know meghan, the idea of her purchasing a playboy magazine, in an airport, no less, is hilarious. She bought it because when we were in college we got her a playgirl magazine for her 21st birthday for a joke, and when she opened it she threw it across the room in horror. We relished doing dramatic readings from it to see how red she would get. My reaction to her pulling out the playboy was similar to hers in college. "Put that away!" I whispered fiercely. I had gotten quite the reputation a few weeks before when my sweet mother-in-law pulled out a book of what I thought was flower origami and turned out to be "Kokigami: Performance Enhancing Adornments for the Adventurous Man" which is just about the funniest book I have ever seen. I made the mistake of showing the nurse and I swear she didn't come back for 2 hours. Now every time I go in there she makes remarks about me bringing in dirty pictures. And to answer the questions on everone's mind: "Why Playboy?" Because they didn't have Playgirl at the airport. And yes, we did read it when we were safely at home. There's a great article about golf courses that Meg's going to show her husband.
• A PVC-pipe marshmallow blow gun. I highly recommend this for, well, anyone, but particularly anyone hooked up to a chemo IV. Michael came in to see why we were laughing so hard and we shot him. (He complained about "marshmallow bruises" the next day, poor fellow).

Joy can be found anywhere, it seems... as long as you're with the right people.

HAPPY MOTHER'S DAY

Dear Mom,
I’ve been thinking a lot about genes lately. Like I said before, I got lucky. But more important than what I inherited are the things you’ve taught me. You have always been my best audience. You laugh at all my jokes and give me the inspiration to keep trying to be witty, even when most coherent thoughts are beyond my grasp. You’ve taught me humor really is the best medicine. You light up gatherings with your enthusiasm and are one of the few people I know who has the stamina to keep up with the kids for an entire day. You’ve taught me that energy can be mustered from within and shared with those around you. You always believe the best about things and people. You taught me that optimism can change outcomes, or at the very least, make the in between time bearable. When I am really, really sad, and all I want is my mom, you are always, always there. You’ve taught me true dedication and loyalty is in coming without having to be asked, and doing what needs to be done without reciprocal expectation or complaint.
Best of all, you’ve shown me how to be a wonderful mother.
I remember the first thing you said when I told you I had cancer… you said we’ll get through this. And we will. I’m just so truly fortunate to have you as such an intergral part of my “we.”
I love you.

ON THE ROAD TO NOTHINGNESS

I am back revived and rejuvenated from the wonderful trip to Austin. We had a great time at the wedding relaxing, enjoying the Texas Hill Country, and (best of all) spending time with friends from far and wide. Highlights included the wedding ceremony, some amazing thunderstorms that almost brought the house down, mary's stories about tennis lessons with a bunch of 10 year old Sri Lankans, pam intrepidly shooing a Longhorn out of the road, and spending time with Jim without the kids. I had been afraid to say out loud how much I had been looking forward to this weekend, for fear that I would jinx it, but phew. Congratulations Matt & Caroline!! (and thanks). I had a good few days working in the Austin office, where I got several comments on my cute new hairdo (I'm really going to have to spend more time styling my hair once I get it back...). Amazing how just focusing on my job for 2 days in a row is such a much appreciated novelty.

Liam is doing great at back at daycare, O2 leash and all, which is another huge relief and a step forward on the "road to nothingness," as my surgeon described that much-longed-for-day when we are through this middle place and back to our lives as we wish them.
Dropping the kids off at daycare is a frantic game of beat the clock to try to make it back out of the parking lot before the 30 minute validation expires. I almost always fail in this endeavor (usually by about 30 seconds) and inevitably end up paying the $2. Ever since I started chemo, the very sweet parking attendant won't take my money. "As long as you're going through this Carolyn, you don't have to pay," he tells me every time. (How does he know my name?) I honestly thought that he just pushed a magic button and opened the gate, but today I figured out that he actually pays for me... which was horrifying. I tried to explain to him that he most definitely didn't need to do this, but he was adamant. "All I can do for you is pray and pay the occasional $2." My first thought was, "Good lord, I better make sure I get out of here in 30 minutes from now on!" but after further reflection, I realized how much of a gift he has given me. Since he started waving me through, the 30 minute pressure's been off-- I've been lingering, instead of rushing out. Case in point was this morning when I hung out for an extra 15 minutes and Xander showed me his domino and counting work. He and his friend Lili walked to me to the door and both gave me hug kisses to send me on my way. I've come to love these interludes with him. He's so proud to have me around and it's so fun for me to see him in his school environment. Who knew that a slice of peace could be granted for the occasional $2? There's some larger lesson here about small gestures making a huge difference and the importance of learning to accept help... but I'll just say again that I am continuously amazed and inspired by the kindness and generosity of new and old friends alike. It makes all the difference.

NOT CURLED UP IN A BALL

Welcome to phase 2 of the wonderful world that is chemo. The fact that I am not curled up in a ball of misery at 3 days post treatment is a very good thing. It went well... no allergic reaction (which is really exciting, considering I am typically allergic to everything) and ben did a great job amusing me... Sometimes I wonder if perhaps this is all just a big ploy to have some one-on-one time with friends and family.
The treatment caused some pain and discomfort, but nothing debilitating. Maybe they have you go through AC first so the second half is reasonable in comparison? I do assume this series will be cumulative as well, so I am trying to enjoy the respite. I'm almost over my nasty cold. I'm still coughing a ton-- when the oncologist said "I don't like the sound of that cough" I immediately thought "do I have lung cancer?" Which is really lame and ridiculous, but I guess that's how I'm going to be for awhile (hopefully not forever?). Funny how you think you've come to terms with the whole "new normal" and then something like that happens and you realize how different you've truly become.
Speaking of adjusting to new information, I found out last week that I tested positive for the BRCA1 genetic mutation. Basically, now we know why I got cancer. It wasn't growing up in Colorado, or eating too much candy, or having my first kid over 30... it was because I have a mutation in one of my genes that is known to greatly increase the risk of breast and ovarian cancer. It's pretty amazing, really, that they know this. They even knew to look in one of 3 specific places in the gene because I have eastern european jewish ancestry. If the test had been "negative", it wouldn't have meant that I didn't have some gene that was screwy, just not one of the 2 that they've identified. So now we know. Knowledge is power, right? (...but isn't ignorance bliss?) In any event, now my path forward isn't necessarily as clear. This gene mutation indicates a level of risk that may induce me to have more surgery-- prophylactic bilateral masectomy and/or oophorectomy (e.g., boobs and ovaries removed for protection). Back I go to all of the doctors to learn more about different risk levels, procedures, and options. yippee. Honestly, it was pretty hard not to be devastated... I just so wanted to see that light at the end of the tunnel (which, apparently, was a train?) but the truth remains it is what it is, and now I just know more about it-- so we can make more educated decisions.
The concept of being a genetic mutant is one that could lend itself to some good jokes (or a movie roles in an X Men movie, perhaps?). I did really come out on the lucky side of the genetic dice toss, though... Honestly, I'd rather be smart and sick for awhile, than stupid for my whole life. Granted, right now I'm both stupid and sick, but it's all about the timeline.
For what it's worth, dear readers, I no longer feel like I'm on the downward side of all of this. What's that called when you're hiking? A false peak? There's something so debilitating about thinking you were on the way down and looking up to see further to cliffs to scale. As Xander would say, I NEED you (although for the full guilt-ridden emphasis you'd probably need to hear the actual whine-sob). I need your blog entries, your emails, your calls, your cards, your good wishes-- anything-- to continue. I know it's been months already and this is getting, to say the least, tiresome... but as my energy continues to wane with each passing chemo, I don't doubt I have it in me (wellmaybesometimes) but I've pretty much given up the ghost on the independence thing, hard as it is (andOHitishard) to admit. help.

A few more (HUGE) things to be happy about:

• Happy Bday Whammy & Benny! (5/3)
• tomorrow jim and I go to Austin to participate in the wedding of our dear friends Matt and Caroline, with the added bonus of getting to see common friends from around the world (Peru, Sri Lanka, DC...)

I will be back, hopefully feeling better than in recent memory (which in my case goes to about 5 minutes ago), on Tuesday.