Hug a Person with Cancer Today!

I was bouncing around on the internet this morning, visiting my regular cancer-related websites (I spend a fair amount of time doing this kind of thing while Finn takes his morning nap) when I found a report on a new study, courtesy of The Onion, that some of you might be interested in: having a friend with cancer can improve your own health by inspiring you to participate in fundraising activities, like 10k runs, on your friend's behalf. So how many of you are planning to run a marathon for me? It's the ultimate way to demonstrate your commitment to the fight against cancer - and it's good for you, too!

Another Surgery? And Next Up: Radiation

I saw my radiation oncologist for the first time on Friday to discuss my post-chemo radiation treatments: preparation, duration, side effects, and all that jazz. I was anticipating a short meeting, since I felt like I knew what radiation entailed and I didn't really have many questions. But what I hadn't planned was that my new doctor, (Dr. Evans, a South African with a lively wit and a fun accent) would be unhappy with the results of my two surgeries and would quiz me rigorously about them.

Some of you might recall that after my re-excision, I still had one "close" margin (the cushion of normal breast tissue around the cancer cells) of 1.2 mm. This apparently places me in a scientific gray area, where the doctors aren't sure how my chances of local recurrence in the long term might be affected. The literature is clear that >2 mm is ideal, and <1 mm is considered unacceptably high-risk for recurrence, but I am sitting in the tiny, uneasy middle between 1 and 2 mm, and there is not yet a clear consensus between hospitals, or even between doctors, on what to do - go back and try to get more tissue for a better margin or utilize additional radiation sessions to compensate for the smaller margin?

Interestingly, my hospital protocol requires a 2 mm margin on DCIS (ductal carcinoma in situ, or non-invasive cancer) but only 1 mm for invasive breast cancer. But about half of my tumor was, in fact, DCIS. For this reason - and because, as he said, why wouldn't I want to give myself the very best possible outcome? - Dr. Evans would like to send me back under the knife. (Oh, by the way, my surgeon Dr Tartter was just listed again by New York Magazine as one of the best surgeons in the city.) The catch might be that I have no tissue left to take. The area of concern was at the very back of the tumor, against my chest wall, and Dr. Tartter's PA thinks that he already "shaved the remaining breast tissue from the chest muscle." Ew! In that case, a third surgery would be of no benefit. They don't excise non-diseased muscle, and a mastectomy would also not confer additional benefit. My hospital is aggressively in the "breast conservation" camp anyway, and all my doctors have agreed that my case does not require a more radical surgery.

I'll leave that bit to my doctors to hash out - just tell me when to show up! But what if surgery is not an option? The extra radiation treatments will make up for it, right? Well, um, they don't really know that either. The standard recommended treatment for me would be 33 doses - 24 to the whole breast and 9 "boost doses" to the area of excision. But Dr. Evans could bump it up a bit on my chest wall to try to give me some extra protection. How many extra cycles? "Three, four, five - whatever it takes." But you just said that you don't even know if the extra radiation actually compensates for a smaller margin, so how do you know what it takes? Hmm...are we flying blind here? To help matters not at all, The New York Times just published an article today about how medical scans are now the leading cause of radiation exposure, which is known to increase the risk of developing cancer. In my case, the probable benefits definitely outweigh the possible risks, but well, I'm counting my scans!

The upshot of this is that, again, this irksome disease has interfered with our plans! We had decided to go to Higgins Lake in August after all, to take advantage of the four week break between chemo and radiation (actually, yet another gray area: less than three weeks is not recommended, and more than six is known to be detrimental, but the ideal point of commencement is indefinitive - isn't cancer fun?), but now are holding off on finalizing those plans until we know for certain about the surgery. Cross your fingers for us because I could really go for a nice meatball dinner and some recreational waterskiing right about now. Not only that, but it is frustrating to think that you're at the third stage of treatment, only to find out that you may have to go back to stage one. I mean, couldn't these doctors have discussed the situation a little sooner? That I know how skilled they all are only makes it worse, in a way. I can't imagine what people who receive substandard care go through.

Radiation, whenever it begins and however long it lasts, will be every day, but the treatment itself takes only a few minutes. Just a quick zap and you're done for the day. I'm having the external kind, where they shoot the stuff at you, not the internal kind, where they actually put a smidge of radioactive hoohah inside the breast. Before the first session, I'll be going in to have a cast taken of my breast, and then they're going to tattoo little guidemarks on my chest to help position the machine, called a "linear accelerator." (From breastcancer.org: "The linear accelerator creates high-energy radiation to treat cancers, using electricity to form a stream of fast-moving subatomic particles." Exciting!) The side effects will include fatigue (probably not a bad as the chemo, though) and possible localized reactions that can vary from mild redness and irritation to severe sunburn-type symptoms like peeling and blistering sores. Ew again! These are not necessarily related to skin tone, so maybe the redhead will get off easy this time around. I guess there are tips about certain medicated creams, bra-wearing, deodorant, and so on that the nurse will instruct me on when I go in for the tats. Ooh, my first tattoos! On the plus side, apparently radiation will tighten up my skin a bit so that I'll look firmer and perkier on that side. Maybe I should have both sides done! Additionally, there are small risks to my lungs and heart, my ribs will be a tiny bit weaker on the left side (Dr. Evans: "What you do with that information I'm not sure. Maybe if you get in a car accident, try to turn your body the other way."), and as I mentioned above, a risk of "secondary malignancy," or cancer caused by the radiation. The risk is compounded by the fact that I'm young and potentially have a longer life span to develop a new cancer. But that's another bridge.

Dreaming of those Michigan cherries...

Moving On

This morning I found out that two members of my support group at Gilda's Club are leaving us. They're both breast cancer survivors, about a year out from treatment, and feel that they are emotionally ready to leave the group and move on with their lives. When I read that message (via an email from the group facilitator), I was suddenly overwhelmed - by panic, jealousy, sadness and loss, and a little bit of anger. I had a physical feeling that I haven't experienced since I was probably about 7 years old, when I had a persistent bout of anxiety-related sleepwalking: my body feels like it's inflating and pushing out out out against my skin, and my skin feels very tight and thin and tense, so that if something touched me just then, I might pop and gush like a too-heavy water balloon. It was my breaking point, my panic attack, and I called my mom.

As the end of chemo draws ever nearer (I have only two treatments left now), I've been anxious and afraid more often, but the note that these two women are "moving on" really laid bare all the feelings I have about going through (and then not going through) treatment. People keep saying things like, "Congratulations, you're almost done!" or "I'm sure you'll be so relieved when this is finished." But the truth is that I don't feel very excited or relieved about coming to the end of chemo. It sounds crazy, especially in light of all of the rather unpleasant side effects (more on those later), but a big part of me wants to beg the doctor for more chemo - a few more months, just to top me off a little, for the road or for good luck. I mean, who asks for more chemo? (I do - my doctor said no! - and so do a lot of other people, according to him. So it's not quite as crazy as it sounds. Or maybe it is as crazy as it sounds, but it's not unusual.)

I guess there are a few different layers here. First is that I feel very taken care of right now. I see my doctor every other week for a breast exam and a discussion of my treatment and how I'm doing. He answers all my questions. And I think he thinks about me even when I'm not right there in the room - like when he called me at home before my MRI to see if my cheeks and arms were still tingling. And when he came into the infusion room once with another prescription that he thought might be helpful for that side effect. When I'm receiving my infusions, the nurses know who I am, too. They know my diagnosis and my treatment and they ask me about my family. The hospital is a comforting place to be right now, with many skilled and knowledgeable people who are looking out for me, and I'm not looking forward to leaving that safe environment.

Then some more about safety. Even though I know this to be untrue, I really do feel psychologically that absolutely nothing bad can happen to me while I'm on the chemo regimen. My cancer can't grow or recur, in the breast or elsewhere, as long as I have these magic poisons pulsing through my body. Would I agree to do this for the rest of my life if the doctors promised that I'd never have cancer again? I might. Right now, muscle aches, painful knees, fatigue, and no hair seem a fair price for an invincible cancer shield.

And that leads nicely into the battlefield imagery. People talk about fighting cancer, beating it, winning. Since February, I've been as active as I can be, calling all arms to my side of the cancer war, learning about my diagnosis and treatment options, following up with the doctors, requesting additional tests, joining other women online and at Gilda's Club, not shrinking from the discomfort of surgery or chemo. Doing it. What happens when all that is over, when I'm not an active member of the battle anymore, when we enter the wait-and-see phase of cancer recovery? How am I going to get through the day-to-day business of being a cancer survivor, always in the back of my mind waiting for something to NOT happen, to NOT have cancer again?

Some days, I think about having a recurrence, and I'm so tightly bound by fear and desperation that for a few moments I can't think or move or breathe. There are other women in my group who will die of cancer. I feel guilty about agonizing over my uncertain future when they face that terrible certainty. We will not all move on in the same way. Which group will I be in?

I often get asked how I'm doing and if the treatment is working. Well. I don't think I'm doing any better or worse than anyone else. I don't think I'm "handling it" better than anyone else, I don't think I'm stronger or braver. I haven't found any good things about cancer so far - no silver lining. Okay, maybe overcoming adversity makes you reevaluate what's important in your life and brings your family closer and blah blah blah. And family and friends have gathered around me to offer support and comfort and love, which is greatly appeciated. But I really didn't care to face my own mortality in order to receive the benefit of a new perspective on life. Actually, I think maybe I had a pretty good perspective on life already. And as far as the treatment working, no one knows. When all this is over, surgery, chemo, and radiation, we won't know any more about my prognosis, my chances for recurrence and survival, than we did at the very beginning. There is no way to determine whether all of the treatment is killing every vagrant, malignant cell in my body. The only way we'll ever know that I've been cured is if years go by - three, five, ten - and I don't have cancer. So how do I deal with that? How do I stay active in the fight against cancer? Do I change my eating habits, become a volunteer with a breast cancer organization, or just slowly push this episode to the distant edges of my memory and move on?

The two women in my group have probably struggled, are maybe still struggling, with the same questions, and they're moving on. I'm jealous because I want to get there, too. A little angry and sad because they didn't say goodbye. I've been depending on them, as part of the group, their experience and support, for the last few months, and I feel a loss that they could walk away from the rest of us without some sort of personal farewell. And panicky because I don't know if and how I'm ever going to get to that point. When will I stop being afraid? When will I be able to say that I feel emotionally ready to move on from cancer?

My mom said that one day I will wake up and realize that I haven't thought about cancer for a few days, a week, even longer. I might pick up a newspaper and see an article about breast cancer and feel a little jolt of recognition that I'm a survivor of that disease. Time works that way, she said, and eventually we get past even the worst parts of our lives, and those memories lose their hold on us. I might find that without even moving, I've moved on.

Mom Pride

I thought folks might like to see some pics we just had taken of our too-cute kids!

Finn is a little man of contradiction. On one hand, he's a pure delight, smiling at everyone, just happy-happy almost all the time at home and on the town, babbling and laughing and playing. On the other hand, he can be a real terror and isn't afraid to throw a baby-sized temper fit if he can't get what he wants. What does he want? Oh, everything. The toilet (he's playing in the water if we forget to close the door), the oven (he pulled it open and trapped himself underneath the door one day), the cabinets and bookshelves, the floor lamps (we're lucky they're not all broken because he's tipped them over a few times), the stereo (almost blew out the speakers again today), Sappha's room (now gated, but he bangs his toys on it in loud protest if she goes in there), and absolutely anything that anyone is eating or drinking (the kid is hungry all the time - he ate three bowls of cereal and fruit for breakfast this morning!). He's getting more mobile all the time, too: besides his wicked fast crawl, he stood up yesterday without assistance for the first time (I mean, from the floor to a stand-alone postition, not pulling up on a piece of furniture), and today he walked the full width of our living room.

Sappha seems to be more herself now. Thanks for all the suggestions and support that you posted to my blog and emailed to me privately. I'm sure we'll have more rough patches, but for now at least, the seas are a bit calmer. Sappha had her first band concert two weeks ago (she plays the clarinet), and it was really fun to hear how much she and the group have progressed since September. When she got her clarinet, she couldn't even produce sound from it! Her last swim meet of the season is next weekend, and she's looking forward to a summer of just splashing around in the pool, rather than doing laps in it. (She wants to waterski this summer, too, so consider this a heads-up to her patient, loving, boat-driving uncles!) School ends at the end of June, and she and I are looking forward to a few weeks of relaxing and doing our favorite summertime stuff (the Natural History Museum, the library, the Brooklyn Ice Cream Factory) before she heads off to Michigan.

So that's about it for an update on the kids - I'll check in about me after this week's chemo.

Whoops - Other Irritating Side Effects

I was so busy thinking about that brain MRI when I was typing last night's post that I forgot to mention a few other aggravating side effects I've been having. (It's hard to focus on much else when your cheeks are tingling like mad!)

For about a week after treatments 2 - 4, I got this build up of mucus on my tongue, which dulls my sense of taste. It sort of feels like "morning mouth" all the time. Gross. And for a person like me, with my extreme love of food, I can hardly think of anything worse than not being able to taste. Well, okay, cancer, but you know what I mean. What a cruel little joke of the drugs. For the most part, foods don't taste "bad" or "off," but my sense of taste is just very dull - everything tastes like there's a thin barrier between me and deliciousness, like I'm trying to eat my meals through plastic wrap. Ugh. I was really excited when a woman in my Gilda's Club group told me it might be thrush, a yeast infection in your mouth that is common among chemo patients and nursing moms, because you can get medication for it. But the doctor said no thrush. It's just plain old mucus caused by the chemo drugs, and there's not much you can do about it but wait for it to go away.

Some people complain that food tastes too sweet or too spicy, but I haven't had that problem. There are, however, a few foods that don't taste right at all, so I've been avoiding those. Chocolate and coffee. Can you believe it?? What heartbreak. Unfortunately, I haven't even lost any weight to go along with my new chocolate free diet because for the first two weeks I kept stubbornly trying to eat it anyway! I baked and bought all my favorite chocolate products one by one in a desperate act to enjoy them. But now I've given up - why eat brownies or cookies or Chubby Hubby ice cream or chocolate milk shakes or lovely bars of dark, dark chocolate or Swiss milk chocolate with hazelnuts (and a lot of other chocolatey indulgences besides) if you can't taste them? And coffee is just foul on those days. Seriously, it's like I'm pregnant.

Anyway, like I said, it starts about two days after each treatment and lasts for about five days. I've tried several tips to minimize it, some of which seem to be working. I brush my teeth BEFORE eating and use my special mouthwash after eating. I added pineapple juice to my daily diet, too, since the enzymes are supposed to help break down the mucus. Or something like that. I can't vouch for the science behind all this stuff! Pineapple is not my favorite of the juice group, so I've been cutting it with ginger ale. It's actually a nice little cocktail, and I bet it would be great with rum. Someone try that out and get back to me on it, okay? Soda helps a bit, too. I think the carbonation breaks up the mucus, but I often feel sugary and sluggish after whole soda (and as most of you know, I dislike diet anything!), so I keep that to a minimum.

This might fade away now that I'm on the Taxol. But my other, other annoying side effect, extremely dry eyes, will probably continue for a while. My eyes are so itchy and painful that I find myself blinking hard several times in a row throughout the day to get the tears flowing. No use. A lot of times, I'm sort of squinty because it hurts to open my eyes fully - just the air on them is agonizing. (And of course, working on the computer does not help, though I concentrate on blinking often and not opening my eyes too widely.) I started using some over-the-counter drops that we already had in the medicine cabinet (which is, by the way, rapidly running out of space), only to find out that they won't help and what I need are "artificial tears." So back to the drug store today to look for Systane, which was recommended by several of my chemo buddies. I want to take care of this soon because besides the pain, dry eyes can actually lead, strangely enough, to an over-production of tears, so that you're just "crying" all the time. And some people then get eye infections. One woman in my group had such trouble with this that she had plugs put in her tear ducts! That seems extreme to me, so I'm hoping the Systane will do the trick until I'm off the chemo drugs.

Oh, and folks keep asking me about my dry skin. It's gotten a lot better since I started using Dove's Nourishing Hand Wash with Deep Moisture (I prefer the French translation on the bottle - Hydratation Profonde) and Neutrogena Norwegian Formula Hand Cream (developed for real Norwegian fishermen so you know it has to be good!). The Neutrogena is great because it's sort of Vaseline-y and lasts through a few hand washings. In fact, when my sister, a nurse, was here to visit, I found out that she uses the same cream. I would highly, highly recommend these two products to anyone who washes their hands a lot or suffers from dry skin. That's my sign-off commercial for this post.

First Dose of Taxol (and Hair Pics)

I made it through the first half of chemo, 4 Adriamycin/Cytoxan cycles, so today I graduated to the T part of my A/C + T = NMC (no more cancer, but that's not a proper medical term) equation.

Most people find, I'm told, that the Taxol cycles are easier than A/C because they tend to have fewer side effects. For example, I will only have to take one of my anti-nausea drugs on the night before and morning of each treatment (instead of for 3 days after), the second one for 2 days after instead of 3, and the third one as needed (same as before, but I was "needing" them more regularly after the last treatment - A/C gets tougher as it goes on, and I'm glad to be shooting up another now poison instead). I'll still need the day-after Neulasta shot to keep my white counts up. The fatigue will continue to cycle downhill, with Monday - Wednesday being my most tired days. And I will probably experience temporary neuropathy, a form of nerve damage that causes numbness, tingling, or pain, primarily in the hands and feet. Most people find this to be fairly mild, but if I have trouble, say, putting on my earrings or walking, the doctor will change my drugs.

On the other hand, a lot of people have allergic reactions to T, so administering it is a slower, more cautious process. I arrived at the hospital at 9:30 for my appointment with Dr. Cohen (we talk about the drugs, any side effects, new prescriptions for those side effects, and he checks my scar tissue, and so on), got my vitals checked (blood pressure and body temperature nice and low, weight holding steady), stopped in to Dr. Cohen's assistant's office to make my next appointment (she's very friendly and thorough, and also has a busily ringing phone to answer, so this is always the longest of my pre-infusion steps - one of the infusion nurses actually hunted me down this morning, saying it was the longest appointment break she'd seen). By 10:45 I hit infusion, got Marie-Anne again, and they took my blood for the CBC and the study I'm participating in (my counts have been good, but platelets are still high, so we anticipate a blood marrow biopsy in the not-too-distant future). Then I hung out for a while until the lab said I was a go. Then they ordered my drugs. For Taxol cycles, I get pre-hydration, Zofran for nausea (no double vision this time!), and Benadryl and Pepcid to combat possible allergic reactions.

I finally started the Taxol at 12 noon. They started the drip really slow, then turned it up every 10 minutes as I showed no signs of allergy - no back or shoulder pain, itchy throat, tight chest, trouble breathing, nausea, etc. Unfortunately, the patient two chairs down wasn't doing as well with her first T treatment. I was glad they pulled the curtain. The drip took 3 1/2 hours, then I got some more hydration, then a flush to rinse my port, then the Heparin to keep the port from clogging. I was done at 4 PM, about 2 1/2 hours later than the A/C cycles. It's a long time to sit, literally tethered, in a hospital chair, even with the Thursday crossword puzzle. But no negative reactions to the drugs, so that was good, and they can speed it up a bit in two weeks.

A few other notes:

Shaving my head - I think most folks heard that I did this while Dave's parents were here after my second treatment. When I read my hands through my hair that morning, a lot came out (it doesn't hurt at all, not like someone pulling healthy hair, since the follicles are dead), so I decided that was it. We all took turns with the clippers (well, not Finn) and it was a grand time. Then this past weekend, we actually shaved off the rest of the stubble with a razor (it was looking pretty patchy by then) so I'm a true baldy now. I suffered a few nicks, and the job wasn't as clean as I wanted, though David wielded the razor valiantly. Fortunately, Erin and her boyfriend (now fiance!) visited from Chicago that afternoon, and Jason, a practicer of the bare-headed look, offered some great tips about equipment and product, including a little razor car that I can drive over my head, shine-eliminator (no hair to absorb the oil, so it builds up on the scalp), and so forth. He also gave a dramatic lecture about the necessity of sunscreen. Believe it. And wear it. I actually like the bald look and think I might go out like this sometimes - with big earrings and a lot of lipstick. I have been wearing more make-up than I used to because my wig is so much more "done" than my real hair usually was that I felt like my unadorned face wasn't quite living up to it! Another weird wig thing that I haven't figured out yet is how to wear my sunglasses. The little sideburn notches totally get in the way. The "earflaps" stick out a little bit if I try to tuck the glasses underneath them, not odd-looking to others, perhaps, but definitely noticeable to me. And the glasses feel tight if I try to put them over that hair, and that looks strange, too. Stay tuned for how I solve this dramatic cancer-related issue. Perhaps more hats are in my future.

Breast MRI - The American Cancer Society advised recently that women at greater risk for breast cancer should have MRIs instead of mammograms. An MRI is a more sensitive test, and a more expensive one, so it picks up a lot of false positives and results in a lot more biopsies than the traditional mammogram; therefore, it isn't suggested for all women. The recommendation was announced the day after I asked Dr. Cohen if I needed an MRI and he said no. But after reading the article, I pressured him for an MRI on both breasts, just to be sure, and though he still didn't think I needed one, he wrote the prescription. I thought that I would feel more comfortable with these more complete results, since my mammogram report noted that my much of my breast tissue is dense and growths could be missed in those areas. Anyway, my MRI results came back CLEAN AS A WHISTLE - no signs anywhere of additional cancer or precancerous cells, not even around the area the surgeon excised. So that was great news! (But please, girls, I hope you're getting your mammograms - don't skip them!)

Brain MRI - Don't freak out, but Dr. Cohen also suggested that I have a brain and cervical spine MRI because I've been feeling some stubborn tingling in my cheeks, and sometimes in my arms, for the past few weeks. The feeling began a few hours after my third treatment, with some numbness and tingling in my cheeks. Within a few hours, it spread to my forearms, where there was an accompanying pressure, like a blood pressure cuff feeling. Later that night, the same pressure and tingling was in my calves. I was still able to move normally, no swelling, loss of mobility or sensation in my skin, and it was all gone by the morning. Dr. Cohen wasn't too concerned. The same symptoms and timing repeated after my fourth treatment, again disappearing by morning. But when the tingling reappeared in my cheeks early this week, I started feeling nervous. The intensity changes, but the tingling has been fairly constant over the last few days. Sometimes I feel it in my arms, though not recently in my legs. What's causing this? Neuropathy is NOT a typical side effect of the drugs I'd been taking before today. Dr. Cohen very gently suggested anxiety. I heartily disagreed, but he prescribed Xanax. I know that anxiety increases the intensity of the feeling (I got myself so worked up about it on Wednesday that my hands were shaking as I tried to feed Finn), but it seems too coincidental that the symptoms arose within hours after my third and fourth infusions. So he also prescribed Pepcid, an antacid that also moderates some allergic reactions. So maybe those things will help. But nonetheless, my good doctor can't ignore such a strange and persistent symptom, so off I go for a brain and neck MRI on June 5, to eliminate any possibility of neurological damage (or such damage that would cause cheek tingling, anyway).

Exciting bit of news: Dr. Cohen gave the thumbs up for a little vacation in between chemo and radiation. So while I still won't be able to make the big family trip to Michigan in August, we're planning a late-July outing to Cedar Point. (Actually, Dr. Cohen was like, "Amusement park, huh? Not the most germ-free of vacation environments..." I promised to wash my hands a lot and not eat much on the Midway.) Some of you might not know that I am an absolute rollercoaster freak and that Sappha is my exactly 54" tall rollercoaster freak-in-training. So we are way pumped. (Dave is not as wild about the scream machines, so he can push the stroller. Just kidding. Sort of.) It will be a really nice break for all of us before I start radiation the following week.

Acting Out

It's been a LONG while since I posted, and the first thing I want to update everyone on isn't me, but Sappha. David and I knew from the day of diagnosis that my having cancer would be an emotional strain for all of us, including Sappha, and we tried to put a strong support system in place for her. We informed her teacher and the school counselor, who both check in with her regularly and keep quiet tabs on her academic performance and interactions with other students. And we found a wonderful support group through Gilda's Club for kids who have a parent with cancer. The weekly group mixes ordinary play with more organized discussion of feelings and thoughts about cancer; Sappha's been attending for about 6 weeks and has really enjoyed spending time with the other kids there.

Anyway, we thought we were doing well. Sappha's had some tough moments that she's confided to David: being embarrassed that people will see me without my hair, for example, and not knowing how to respond to friends at school when they ask about me. (She doesn't seem to really want to talk about this stuff with me, which is fine.) But for the most part, she has been very steady, her normal self, and a big help at home when I needed her, too. We were told that a lot of kids "act out" in the months following a cancer diagnosis, but Dave and I didn't even know what Sappha acting out would look like - until the last few weeks.

The few seemingly random outbursts that caused some raised eyebrows at our house have turned into more of a pattern of behavior, and last weekend we had an all-out tantrum on the sidewalk, complete with crying, screaming, and hitting, after which she refused for several minutes to move from her crosslegged position on the ground. I'm sure that reading this, many of you are as completely dumbfounded by this description as we were when it happened! Other fits around the house have been smaller, but sudden, with tears and slamming and stomping and yelling. About things like brushing teeth and not being able to find socks.

So the big question for us is how much of this is regular, nine-year-old girl (with a new baby brother) stuff and how much of it is emotional stress brought on by my cancer and treatment? And what should we do to help her deal with her feelings right now? The day after the sidewalk temper fit, Dave and I asked Sappha about what she's feeling before these outbursts, and she said that she feels angry and sad "most of the time." Most days, most of the day.

Before we take a more serious step like counseling services (we're trying hard to not make this into a greater issue than it is, or to draw more attention - positive or negative - to her behavior), I'd appreciate some advice about things we might be able to try at home to assuage some of these out-of-control emotions she's having. A few steps I've already taken: we're putting up a baby gate so Finn can't get into Sappha's room (she doesn't have a door) and she can have some privacy in there, and I talked with her yesterday about journaling, which I think might be good because she likes to write and is kind of introspective anyway.

Another thing that I think is probably adding to this is that Dave and I have been a little lenient lately with some of our normal house rules. I think we were trying to make things easier for Sappha by dialing down the discipline a notch, which seems to have backfired. So we're going to reinstate a regular, parent-assisted bedtime routine, and maybe try to get Finn in bed a bit earlier at night so we have time for a family game (we used to do that almost every night).

So we're trying a few different angles, to hopefully address the tween angst as well as the cancer stress. I'd love to hear any more ideas our there for smoothing this road.

I'll post again soon with an update on my treatments - I'm halfway through chemo now!

Week One in ChemoLand

Hello everyone, and thanks for waiting for me to get around to posting again. I probably scared you all a little, making you think that I've been away from the computer because I was so flattened by the drugs. And I did have a few tough days, but in general I've been feeling, well, pretty good! Actually, I'm surprised and delighted by how good I feel. Knowing that chemo is a downward spiral of side effects, I'm very happy to be starting off at a high point. Maybe it means that my lowest level won't be so low, or maybe it just means that it will take the drugs a few rounds to do real damage to my young, strong, healthy body. In any case, it means one treatment down, seven to go!

Here's a round up of the side effects so far:

• Tiredness - I crashed early on Thursday and Friday and took a nap on Saturday, but was able to maintain a pretty normal activity level. Then Monday hit like a ton of bricks. Well, maybe a half-ton, with the other half crashing in on Tuesday. I was WIPED OUT. The doctors said that the 5th or 6th day would be the worst, but I was feeling so great the first few days that I really thought I'd gotten away with something! No such luck. By Tuesday I could barely function. Thank goodness Sappha is home this week and could help with Finn. Wednesday was better (a one nap day), Thursday another step up, and today I'm definitely back in full form. But man, they aren't kidding about the energy dip - it's serious and sudden. Next time I'll be more prepared.
• Nausea - hardly any. I've only had to take two "extra" anti-nausea pill (in addition to the prescribed amounts I need to take without fail for three days after each infusion). Otherwise, I've been able to control it by nibbling a little something before getting out of bed and having a stash of crackers in my bag. I've been eating real food and everything!
  
• Headache - this is caused by the anti-nausea meds, but I'd rather have the headache than the nausea! Still, it isn't skull-splitting, just enough to send me to bed early.
• Pain - just some soreness from the port surgery, for which I've taken some Tylenol. I'm not supposed to take Tylenol for long, though, because it could suppress a fever, which would be an important indicator of infection. I didn't even have any bone or joint pain from the follow-up Neulasta shot (for my white cells), so I was happy about that, too. Also from the port, I think, is some sharp rib pain when I breathe deeply. I think that just takes time.
  
• Stiffness in my neck and shoulders - I hadn't heard about this side effect before, but my support group told me that it's actually pretty common. I asked David to give me a little massage, but my skin is also hypersensitive, so he could barely touch me! By today the soreness is almost gone, though.
• Dry skin - I think mostly from all the handwashing. I need a more moisturizing soap and a non-scented lotion (because the smell of the lotion I was using was aggravating the headache).
• Mouth sore - I got one small blister inside my lip on Tuesday morning, but it popped while I was eating breakfast and I haven't gotten any more. Yet.
  
• Taste changes? I'm not sure, but that 7-Up really tasted like dishwashing detergent to me! I tried it out of the can and in four different glasses - same thing.
• Clogged ears and sinuses - again, I'm not sure, maybe it was a small cold. I hope it was a cold and not a side effect because I really don't want to experience this every time!
• Hair loss - no, not yet! But my mom, Sappha, and I went ALL OUT at the salon. My mom had about 14 inches cut off (she'd been growing it long to donate to Locks of Love), Sappha looks like Mia Farrow, and I haven't had hair this short since that disastrous high school graduation cut (anyone who remembers that unfortunate coiffure will agree that this is much better!) . Here are the before and after pictures. What a difference - the stylist was loving us!
  

Here's the run-down of my first chemo trip:

Dave and I went to the hospital early Thursday morning for my port surgery. I was conscious during the surgery, with just a mild sedative and local anesthesia. They hung a curtain around and over my head so I couldn't see anything, so it was rather like camping in a very small tent. I was doing just fine until they started getting all of the lights in place, scrubbing my chest with the soap, and all those other preparations. Then I got a little teary and almost had to ask them for David. But I toughed it out. It wasn't the surgery I was anxious about (though I don't know why they have to go ON AND ON about the risk of infection - is that really what a strapped-down patient needs to hear?), but the whole day. I was surprised that being conscious during the procedure made such a difference, though. With the lumpectomy and re-excision surgeries, I was already out when they did all the iodine painting and other prep. It seemed more ominous when I was awake, more serious somehow. Anyway, they poked and pushed at my chest and collarbone and got the port in, stitched it up a bit, left it accessed so the nurses upstairs would be able to use it immediately, and sent us on our way. We were up at the Infusion Suite by 11 AM. The port is on my right side and makes a round lump between my skin and ribcage, about two inches below my collarbone. I removed the bandages on Sunday, took my first shower on Monday, and it continues to heal and feel more and more comfortable. I was supposed to go in for a port check yesterday, but it was so cold and I would have had to drag the kids all the way up there, just so the doctor could say, "Yup, looks good, go home." So I skipped it. I'll drop in next week before Infusion #2 for an official okay, but given that there is absolutely no sign of infection anywhere, I think I'm safe.

Up in Oncology, I had my vitals checked, spoke with Dr. Cohen for a few minutes, scheduled my next appointments, picked out a comfy recliner in the corner, and waited for my nurse, Marie Anne, to tell me how this thing was gonna go down. (I don't think I've mentioned that the Oncology Dept. is actually on the same floor of the hospital as the birthing center where Finn was born. And when I finish with the chemo treatments, it will be about the time of his first birthday - a sort-of coincidence.) Along the way, I bumped into a woman I met at the wig-fitting, so we chatted while Marie Anne got me hooked up. First into my brand-spanking-new port was a heavy dose of Ondansetron (brand name Zofran), a powerful anti-nausea drug. But as I spoke with my chemo buddy across the aisle, I was having a hard time focusing. I blinked hard and rubbed at my eyes a bit (was I just tired from the earlier sedative?), but when I turned my head to say something to Dave, it felt like another head was attached to my shoulder, moving in tandem with my own. We called the nurse over in a panic, but she explained that this often happens with the first dose of Ondansetron. They should warn people it causes double-vision! Then I downed a few pills of another anti-nausea drug, and they gave me a saline drip. Marie Anne injected the first chemo drug, Adriamycin, into my port with a big syringe, as it's a thick, syrupy fluid. They go really slow at first, to make sure that there is no burning, pain, or any other "bad" feeling around the port area, but I had no problems at all. Then a drip of Cytoxan, which took about an hour. Then a flush, so that the port won't be clogged on my next visit, and I was done. The whole infusion process took about three hours.

Dave and I headed home (my mom had Finn and was on Sappha pick-up duty, as well), and I felt good enough to stop at Room & Board and make him sit on the couch I want to buy. I was sidetracked by a new streetcart, Calexico, where I bought a pork taco, despite the fact that my white cells were probably falling as I bit into the fresh corn tortilla. Yum! But okay, I promised Dave, no more street food until after chemo. I swear.

Then back home, feeling pretty good, drinking that water (3 liters a day to flush out the meds), washing my hands after each and every trip to the bathroom (a notable effort because, come on, admit it - who washes their hands every time when they're in their own house?), taking my temperature 4 times/day, taking my pills, and enjoying the spaghetti dinner that a friend brought over, brushing my teeth and rinsing with the special mouthwash, and so on. We stopped for Tylenol at the drugstore and left my wallet behind, but when I called the next morning, certain it was gone forever, they had it - and everything in it. So Luck seems to be on our side.

On Friday, I got my Neulasta shot, and Marie Anne showed me how to give it to myself so I won't have to go back to the hospital for it in future weeks. Fortunately, for my next two chemo cycles, I'll be attended by a personal nurse - my mother-in-law first, then my sister. So I should be very practiced by the time I actually have to do it unsupervised! But it seems pretty simple: grab a roll of belly fat, jab the needle in, slowly inject the medicine (it stings more if you do it fast). Dave says as long as he doesn't have to do it, he's A-OK.

So that's about it. One week of chemo finished, fifteen weeks to go.

Chemo Brain?

I was invited to participate in a study studying the effects of chemotherapy and estrogen levels on cognitive function of premenopausal women with breast cancer. The study will examine how my chemo treatment might affect things like my memory, concentration, mood, sleep quality, and fatigue. Some patients experience a negative change in these characteristics, the result of which is often slangily called "chemo brain." These can somtimes be traced to another, easily remedied side effect of the chemo drugs, like anemia. But other patients have continued to struggle with memory lapses and attention deficits for months after their chemo treatments end.

Several women in my online group have shared some of their most embarrassing chemo brain moments, like trying to cook dinner in the dishwasher, putting refrigerated groceries into the cupboards, using the wrong words (one cancer-patient nurse told a patient she was treating that he had hemorrhoids instead of a hemorrhage - big difference!), and so on. It's humorous when you absent-mindedly toss the chicken into the laundry hamper, but chemo brain can be dangerous, too, like when women blank on driving rules or turn on the wrong stove burner.

Doctors aren't quite sure exactly what causes chemo brain, so they don't currently have a way to help women deal with it. The study that I am participating in will forward the medical conversation around this issue, so that future steps can be taken to treat and/or minimize chemo's effects on various thought processes.

I had the baseline evaluation this morning to test my memory, attention, and movement skills, which was an enjoyable way to distract myself on this day-before-chemo. It was IQ-type games and puzzles stuff. There were even colored markers involved! One of the hardest exercises required me to reorganize a spoken series of letters and numbers into numbers first, then letters, each in order. For example, if the researcher said, "B-7-J-2," I would say, "2-7-B-J." The series went up to eight letter/number combinations, so it got tricky, though I was pretty proud of my memory for holding its own all the way to the end! A similar test asked me to repeat a list of twelve words; I got six tries to remember all twelve, with a prompt from the researcher at the end of each attempt for the words I missed. It took me three times to get them all. Let's see how many I can still remember: throw, lily, film, discrete, beef, street, helmet, snake, dug, pick, loft...one more. Not too bad! For another test I had to flip through a book of pictures and name them, tree, broom, pelican, trellis, and so on. I did fine, until "protractor." Geez, I haven't said that word since elementary school, probably! Then I had to look at and reproduce from memory some simple shape drawings, and then copy a more complicated geographic pattern, using the picture as a guide. (That's where the markers came in!)

The movement tests were fun, too. One was like a telegraph clicker that I had to press as many times as I could in, I think, 15 seconds. We timed my right hand and my left hand separately. Poor little lefty. He just can't click as fast as his twin. Another test used the "grooved peg board": a board that fits, instead of round pegs, ones with notches on them, like old skeleton keys. The holes are arranged in a grid, but the notches are turned in all different directions. Again, we timed my right hand and then my clumsy left hand, which dropped a few pegs early in the game, but recovered for a strong finish. There were some other tests, too, verbal and on paper and computer, and a long questionnaire - the whole thing took about two hours.

I'll go back two more times after the chemo is over to repeat all of the tests for comparison. They'll also be taking some blood to monitor my hormone levels, since part of the study is to determine how my premenopausal condition might factor into any cognitive changes. (They've already completed a similar study with post-menopausal women with breast cancer.) And I get paid, too: $300. Just enough to cover the spa day I vowed to treat myself to halfway through chemo. So, if anyone wants to join me for grooved peg board practice, let me know!

Chemo Countdown & Expected Side Effects

The fuse is ever shorter on my “chemo countdown.” Only two days to go! And my emotional fuse is shorter, too. I often feel just on the verge of bursting into tears. I’m a little frightened of the chemo side effects, but I know that many, many women have handled them, so I can, too. I’m more worried about the treatment really working. Everything seems so much bigger and scarier and more real now that the chemo is about to start. For the last few weeks, I’ve felt pretty “normal,” even while going to various appointments and such. But once the chemo starts, there won’t be any denying that I actually have cancer. All the news about Elizabeth Edwards this week was not exactly what I needed to hear. Even though I know it’s irrational, every little twinge or ache I feel is a possible new cancer. I hope I haven’t hounded my doctor with too many ridiculous questions and concerns, like my sudden panic on re-reading my path report this morning and seeing “intralobular tumor” for the first time. Intralobular? I thought my cancer was all intraductal. Does this mean that the cancer is actually more invasive than I’ve been thinking? People with intralobular cancer usually have mastectomies because the cancer cells can be more diffuse, not focused in a single tumor. Did we make the wrong surgery decision? And why are my legs so tired? (David says: Because you’ve been running all over the city and not sleeping enough, maybe?) We’ll see how Dr. Cohen answers those!

But anyway, I think I’m prepared for the side effects, the physical ones and the emotional ones. For emotional dealings, I have my online group (the March Chemo-Sabes) and a new, in person support group that I’m attending for the first time tomorrow night. And I’ll have my mom here, too, for the first cycle. For the physical stuff, I’ve done a lot of research (and shopping!) to be ready. The drugs work by interfering with the reproduction of fast growing cells (like my cancer cells), so most of the side effects are caused by collateral damage to other fast growing cells in the body, like those in hair follicles, skin, and the inside of my stomach. Here are the likely side effects I’ll experience:

Hair loss. This is the one everyone knows about, of course. Although I’ve heard the stories about women who didn’t lose their hair, I’m not likely to join that group because of the drugs and dosages I’m getting. (Creative use of office supplies: I’ve heard that after most of the hair goes, a lot of women take the last of the fuzz off with masking tape because a razor hurts their sensitive scalps!) But I’ve got my wig, and my creative and talented clothing-designer mom is making me some stylish hats, including beanies for when my little bald head is cold at night. Maybe this weekend, after the first infusion, I’ll suck it up and go to the salon for the haircut I’ve been avoiding.

Nausea is likely, but can be easily controlled with medication. I have three different drugs at the ready: ondansetron, dexamethasone, and metoclopramide. Since they are designed to prevent nausea, rather than stop it once it begins, I’m supposed to take them before the first infusion and then around the clock for the first few days afterwards. Diet helps, too, like avoiding spicy, fatty, or fried foods (basically, anything that might have made me feel queasy while pregnant!).

Fatigue. I was surprised to hear that fatigue is cited by most chemo patients as the most troublesome side effect. Hair loss can be masked, and nausea can be treated with medication, but there isn’t much they can do about the fatigue, which is both physical and emotional. Dr. Cohen explained the fatigue cycles after each treatment: my energy will bottom out on about the fifth day after each infusion, then slowly come back up. But even so, the effect is cumulative, so that my highest energy point will always be a bit lower than the last high. It’s a cycle, but in a downward direction. They can give red blood cell boosters, like Procrit, if the fatigue is caused by anemia, but a study was just released saying that the FDA is concerned that these drugs are overused and may cause heart and other problems in cancer patients. Other things to do to minimize fatigue are more basic: take several short rests during the day, prioritize activities for when you feel most energetic, maintain a regular exercise program if possible, distract yourself with interesting activities, and so forth.

Early menopause and infertility. This was the humdinger for me, and I’m still trying to get my brain around the fact that, quite probably, when all this is over, I won’t be able to bear any more children. On one hand, I feel very fortunate that I already have two beautiful, amazing children to love. I’m so thankful that we decided to have Finn when we did, as he has been such a delight and, especially this past month, a comfort. I have the girl/boy balance, so no need to regret that I didn’t get to experience raising one of each sex. And yet…are we quite ready to be “done”? Dr. Cohen gave us the name of a fertility specialist who works primarily with cancer patients, in case we wanted to harvest and fertilize eggs and freeze the resulting embryos for in vitro later on. But David and I decided, after some really heart-wrenching discussion and a hard look at the in vitro statistics, that we wouldn’t go the harvest/fertilize/freeze route. Dr. Fornier was more optimistic about my chances of becoming pregnant after my treatments are over, so we’ll just have to wait and see. It can take up to two years for my periods to return, if they are going to, and my doctors have advised me to wait at least two years, and preferably five years, after treatment to try to become pregnant, in case of a recurrence. So after all that, we might not want to, anyway. And there are always other options if we really want to have another baby, like in vitro with a donor egg or adoption. Then again, would it really be so terrible to go through menopause now? No more periods or birth control!

Infection. I mentioned this in an earlier post, and I’ll be getting a regular injection to pump up my infection-fighting white blood cells. But I’ll have to do what I can to stay clear of harmful bacteria and viruses, even though avoiding crowds is tough when you regularly ride the subway, and not changing diapers isn’t really an option! I’ll take my temperature at least 4 times/day and head to the ER if it hits 100.4° or higher.

Sores and a metallic taste in the mouth. Special mouthwash and toothpaste is supposed to help (though I have to be careful when brushing my teeth to avoid gum damage, and no flossing allowed for the same reason), as well as eating with plastic utensils, sucking on hard candies, and drinking lots and LOTS of water.

Numbness in the hands and feet. This will probably happen in the second half of chemo, with the Taxol. Taxol can cause nerve damage, so many people experience a tingling sensation or numbness in their limbs. But if it becomes severe, they can adjust the dosage or switch me to another drug. Taxol also causes more allergic reactions than my other chemo drugs do, so to be on the safe side, they’ll give me a steroid shot before each of those infusions.

Other potential side effects, some fun, some not so fun: pink pee (actually, that’s the only “fun” one, caused by the red color of the Adriamycin), loss or loosening of fingernails and toenails (ew!), an increased sensitivity to sun (um, I can’t even imagine how that’s possible), dry skin, mild allergic reactions (like itchiness and watery eyes), joint pain and body aches, and bladder infection. More serious, though rare, side effects include heart damage and a form of leukemia (the latter of which would be treated by, you guessed it, more chemo).

Two more days until the ride begins…

Second Opinion

I had an appointment with Dr. Monica Fornier on Wednesday at Memorial Sloan Kettering to get a second opinion about the chemo treatment recommended by my medical oncologist at St. Luke's - Roosevelt. I was particularly interested in finding out why some other women I had met through the online discussion boards, who had diagnoses very similar to mine, were undergoing different chemo regimens. For example, some were doing AC/T (like me) but with 12 weekly Taxol cycles, instead of 4 dose dense cycles. And some were doing 6 cyles of TAC, in which the same three drugs are given all together, rather than split between an AC course and a T course. I also wanted to find out if there were any clinical trials available for me, as a high grade, triple negative cancer patient.

The general recommendation for Dr. Fornier was the same: dose dense AC/T, 4 cycles of each. She explained that MSK developed the AC/T chemo course and feel very confident in its efficacy. They believe that 4 dose dense T cycles is more effective and more convenient, than 12 weekly cycles. In addition, T side effects don't really multiple at the higher dosage, so patients don't experience as much discomfort as they do during the AC cycles. In regards to TAC, apparently this is a curious geographical preference. TAC is more commonly used on the west coast; AC/T on the east coast. At MSK, they think that TAC is more brutally toxic to patients than AC/T and doesn't have any better results. So they don't use it. Huh. I haven't done any additional research on this subject, so I'm not entirely sure who wins the CA vs. NY chemo title fight, but I guess this is the way it is. Okay.

However, there was one other possibility for me. MSK is leading a clinical trial on the drug Avastin, to test its effectiveness in treating patients with early stage breast cancer who have additional risk factors like positive nodes or negative hormone receptors. Avastin, used in combination with Taxol, has been successful in treating women with advanced bc (that is, bc that has spread to other parts of the body) by decreasing the size of their tumors and increasing the amount of time before their cancers worsened. This study will ultimately help determine if Avastin might provide some of the same benefits to women with early stage bc who currently have no other targeted therapies available to them.

I have decided not to participate in the clinical trial for a few different reasons. First, it is an small, early phase trial, so the primary focus is on the safety of the drug when given with an AC/T chemo course. The research is especially centered on the potential for Avastin to cause heart damage when given in conjunction with Adriamycin, which is already known to have a possible risk of heart damage. The "likely" side effects of Avastin include high blood pressure and nosebleeds; "less likely" effects include mini stroke, chest pain, and blood clots that can result in stroke and heart attack. The blood clotting and bleeding factors are particular concerns for me because my platelet counts have been high, meaning I might be at greater risk for both clotting and bleeding already. (In fact, they might not even want me because of those high counts.) And as my sister-in-law said, I'm not sure I want to donate my heart to science while I'm still using it!

Avastin works by blocking the growth of blood vessels, shutting the blood supply to cancer tumors. If I have stray cancer cells in my body right now, it really could be a potential benefit to me. However, it's not as if I don't have any other options. Avastin is not my best or last chance for a cure. I already have pretty good odds of no recurrence just by taking the proven AC/T course - 86% in ten years. Even if I ignored the risks of possible side effects, there is no guarantee that Avastin will help me. That's the purpose, of course, of a clinical trial. The drug could give me a better cancer outcome, do nothing, or even result in a worse outcome than if I hadn't taken it. Until the trials are complete (years from now), there is simply no way to know, or even predict, or estimate, or anything. It's all up in the air.

The are a few other more superficial factors (I mean, not related directly to the potential outcome) that influenced my decision. In order to participate in the trial, I would need to transfer all my scans, treatments, and follow up care to MSK. I'm already on the scan path at SLR, and I'm pretty happy with the level of care I've received there so far; I'd be sad to leave the smaller, more personal center. MSK is THE leading cancer research center in the country, but they are also very big, and the service just isn't as personal. I've spoken to many people - medical professionals, current and former patients, and others - who compare MSK to a factory: get 'em in, get 'em out. While I found everyone during my appointment very friendly, I definitely noticed a difference in style. For example, we had to go to billing and registration first, then to a waiting area on another floor before filling out paperwork and seeing a nurse, then a resident, and finally the doctor in the examination room, then move to another office for the consultation (attended by yet another resident). At SLR, I was able to drop in and talk with Dr. Cohen for five minutes without an appointment; I think that would be difficult at MSK.

The trial is very long. After 4 months of chemo + Avastin, I would continue with Avastin, one infusion every three weeks for 8 more months, for a total of 12 months of infusions. Radiation would follow that. That's a long time! And MSK doesn't believe in using medi-ports. They said ports cause infection, leave a scar, and that they don't need them anyway because "our nurses are good." That sounded conceited and snobbish and really turned me off. Besides, 12 months of infusions without a port? That could do some real damage to anyone's veins!

I talked with Dr. Cohen about the trial. He said that as much as he believes in clinical trials and urges his patients to consider them, he doesn't feel very strongly in either direction about my participation in this particular trial. It is all about my own comfort level and whether I want to try an unproven therapy in the hopes that it might offer me some benefit. Twenty years from now, we might be saying that maybe it would have been a good idea to try the Avastin. Of course, he continued, if we were talking about my cancer in the past tense in twenty years, he'd be happy with that, too! However, he did say that if he were making this decision for his own wife, he would be hesitant to enroll in the trial. That was pretty much the final piece of information I needed - a gut reaction from a doctor I trust. So we decided no, and I'll be starting the AC/T course at SLR next Thursday. I hope I never have cause to second guess the decision.

Thrombocytosis - "But Don't Worry"

Immediately after my happy, happy time at the wig-fitting, I came crashing back down with a message from Dr. Cohen. "No emergency," he said on my voice mail. "Just checking in with you about the results of your lab tests last week."

What did that mean?? If everything was fine, why didn't he just say everything was fine? I was a little jittery until he called back, despite a friend, my husband, and my mother all telling me that it is normal for a doctor to call with the results, whatever they are, and that of course Dr. Cohen couldn't leave the details of the results in a voice mail. They probably have rules against that, for patient privacy. Okay, okay, but AARRGGHH!

Anyway, my complete blood count (CBC, which I'll be doing before every chemo session) showed normal levels of red and white blood cells, but elevated platelet levels. I also had elevated platelet levels while pregnant with Finn, but by taking iron supplements I was able to lower it to the high end of the normal range. I was supposed to go back for another CBC a few months after his birth to get a better baseline, but I was lazy (I mean, hey, I feel perfectly fine) and then all this stuff happened.

Elevated platelets can be bad because you could develop blood clots more easily. Conversely, if the platelets are high because they are defective, you could also hemorrhage. My counts weren't off the charts high, but were high enough to get Dr. Cohen's attention. The most likely reason is thrombocytosis, which can either be reactive or essential. Mine is most likely reactive both times, first to the pregnancy and now to the surgeries (this CBC was done about 1 1/2 weeks after my second lumpectomy, and platelets rise because of infection or inflammation, the latter of which is a obviously common effect of surgery). If fact, Dr. Cohen said that he wouldn't have thought twice about it had he not already known about my earlier elevated levels during pregnancy, which raises the possibility that my counts are just high all the time. (By the way, iron supplements are not recommended during chemo, so I can't treat it that way this time.)

The plan is to forge ahead with the chemo and radiation and then follow up with the platelet stuff. Of course, all these levels will be monitored closely throughout my chemo. If the platelets are still high after the chemo, Dr. Cohen wants to do a bone marrow biopsy to see if there is some reason why my bone marrow overproduces platelets. Essential thrombocytosis is what's called a "diagnosis of exclusion," meaning that if they can't find any other reason for the symptoms (high platelets), it must be that. This is a pretty unusual diagnosis in someone my age (average age at diagnosis is 60), but as we've discovered lately, such things do happen. All this could be possibly related or lead to a rarer form of leukemia (also seen primarily in older patients), but outside of that unlikelihood, Dr. Cohen assured me that essential thrombocytosis can be managed with medication if the levels get really high, and that, anyway, there is no evidence that this diagnosis lowers your life expectancy at all.

Great. Just another thing to worry about. Or not worry about, since we're not going to do anything about it until after the bc treatments. But a bone marrow biopsy doesn't sound fun, so let's hope for reactive thrombocytosis with platelet levels that soon fall back into the normal range.

My New Hair

Here it is - my new hair! I'm glad to have the wig already, so that I don't feel as nervous about the process of losing my real hair. Even though I don't consider myself a particularly vain or high maintenance person, I have to admit that I'll mourn my hair a bit. I don't wear much make-up or jewelry, I buy my clothes at Old Navy and Target, I'm not really into fingernails (though I do enjoy the occasional pedicure!), I've never had a facial, and I can count on one hand the number of massages I've had, but I've been coloring my hair since I was 17 years old. My favorite shade is "Just Like Sappha's," and the regular treks to the salon chair have been my one beauty indulgence for a long time. On the plus side, you never need to get a root job on your wig! So good-bye hair - hello wig! Don't I look cute?

I picked up my new 'do and a slew of free beauty products at a make-over and wig-fitting session at the cancer center, sponsored by Pantene and Bobby Brown. (You might not be able to tell from the photo, but I'm wearing eyeliner!) What an amazing afternoon. There was a stack of wigs of all different lengths, styles, and colors, and each woman chose one, after which it was fitted on her, trimmed, and styled. The stylists spent a terrific amount of time carefully giving each woman the perfect "haircut," and everyone walked out of the building feeling incredibly beautiful. I wouldn't be able to believe the "before" and "after" pictures of I hadn't seen the process myself. It's astonishing how natural the wigs look and feel. I mean, they are made from human hair, but still.

But of course it was so much more than just another haircut. Nearly all of the women had started or completed chemo and already sported bare heads. The atmosphere was very festive, friendly, and supportive; people introduced themselves, made connections through their shared doctors and treatments, exchanged email addresses, talked about Tina Turner and American Idol, exclaimed over our new looks, and joked and laughed. We were especially entertained by one woman who recently finished reconstruction surgery and was thrilled with her "boob job" - she said that she hadn't been quite so bountiful before and was really loving her new figure!

Anyway, with my Noxema exfoliating something and my Olay age-defying and more moisturizer, my organic lime basil mandarin cologne and my Bobby Brown pink sparkly lip gloss, my American Express gift card and who knows what else in this full-to-bursting goody bag, I'm going through chemo with style.

P.S. I tried on Barbie blonde. It just didn't work for me. But I'll probably invest in at least one more "hair prothesis" (as covered under our insurance policy). The are lots more shades of red out there to try!

First Chemo Date Set!

Last Friday, Dave and I met with my medical oncologist, Dr. Seth Cohen, for the first time. I'm now officially out of the "surgery" stage of treatment and onto the "chemo" stage. I won't need to see Dr. Tartter again until after radiation is completed. Dr. Cohen is a really friendly, patient guy, fairly young but knows his stuff, and as David commented proudly, not as elegantly balding as he is. We talked about the plan for my chemo and got the first appointments set: MUGA (heart scan) and chest x-ray on 3/22, port implant and first infusion on 3/29. After these treatments get started, we'll set up an appointment with a radiation oncologist to talk about that step.

First, Dr. Cohen asked me to explain how I understood my diagnosis, based on the results of my two surgeries. I explained, rather self-consciously, and joked that it felt a little like a test. Dr. Cohen said I passed. I think he did this not only to find out where to start the conversation, at diagnosis or at treatment, but also to know at what level he could talk with me, I mean, at what level his descriptions and explanations should be. I thought this was a smart way to get to know me quickly. Is that part of med school training? Then we talked about the drugs and side effects and had a quick physical exam. My incisions are healing really well. The lymph node incision under my arm is still bumpy (that will even out), and the skin around it is tender and swollen. That's normal. David noted that if he pokes his own underarm (or Sappha's) several times, it hurts, too. Is this area sensitive because it's under the arm, or is it under the arm because it's sensitive? A deep thought, though not one Sappha wants to ponder at the moment, seeing as she is trying to protect her underams from her father's poking.

Anyway, Dr. Cohen is recommending a course of chemotherapy called AC/T: 4 cycles (2 weeks apart) of Adriamycin (also called Doxorubicin) and Cyclophosphamide (also called Cytoxan), followed by 4 cycles (2 weeks apart) of Taxol (also called Paclitaxel), for a total of 16 weeks of treatment.

Before the first session, I’ll have a heart scan in order to assess my heart function. We are expecting this to be normal, but Adriamycin can cause damage to the heart muscle and may ultimately lead to heart failure in some patients. It would be unlikely for me to experience this complication, however, given my age and otherwise excellent health. The chest x-ray will likewise be used to evaluate my heart and lung function, as well as to reaffirm the doctor’s belief that my cancer has not spread outside of the breast to my lungs. These are routine pre-chemo tests and do not reflect any suspicion that my prognosis might be worse than stated earlier.

On the morning of the first infusion, I’ll go in early to get my port implanted. Think of it like an outlet that they’ll “plug” the drugs into. The port (Medi-Port and Port-a-Cath are some common brand names) will make chemo easier by eliminating the need to find a vein in my arm for each infusion. Although I have enviably large veins in each arm and pale skin that makes finding them very easy, the repeated doses of chemo, along with the required blood draws and other injections, start to cause wear and tear. Additionally, these are brutally powerful drugs that can “burn” the skin and veins; placing a port in a large vein minimizes that risk and discomfort. And since I won’t have a needle in my arm, I’ll be able to move around more comfortably during the infusions. The port is about the diameter of a quarter and about a half-inch thick. It will be implanted entirely under my skin, about two inches under my collarbone, with an attached tube (the “catheter” part of the Port-a-Cath) inserted into my Superior Vena Cava, a great big vein right next to my heart that will energetically funnel the drugs to the furthest reaches of my body. When they want to use it, they will just give it an alcohol rub and a little numbing medication and stick a needle in through my skin and the plastic top of the port. It’s completely hygienic; I don’t have to worry about it when showering, for example. There will be a noticeable bump under my skin where the port is, and a small scar from the surgeries to implant and remove it. But at this point, I’m not so much worried about the bump or scar! The surgeries are short, but they do require more than a local anesthetic. So I’ll be out for a bit, but then they can use that baby for the very first infusion later that morning. No waiting time!

Before each infusion session, I’ll have a blood draw and they’ll measure my levels of white and red blood cells and platelets. The white blood cell count is particularly important because the chemo will lower my white blood cell count, making it more difficult for me to fight infection. If my levels are not high enough, they may have to delay my infusion. To help keep my counts high, I’ll return to the hospital the day after each infusion for an injection of Neulasta, a drug that stimulates the growth of white blood cells. Fun fact about Neulasta: it’s made from the bacteria E. coli! Also, I’m to do what I can to avoid injury and infection, through diet (no unpasteurized or cured stuff; cook foods thoroughly and limit consumption of uncooked fruits and vegetables, especially those that can’t be peeled; limit any alcohol intake to one drink per week; we’re also keeping an even more organic kitchen than usual; and so forth), lots of handwashing and glove wearing, staying away from sickie kids and adults (so no field trips with Sappha’s class, for example, and no live bacteria immunizations for Finn until chemo is over), and resting when my cell counts (and energy levels) are the lowest, about five days after each infusion.

The infusions themselves will take about 2 hours. I can hang out in the “Infusion Suite” by myself each time, but someone is supposed to accompany me home. The “suite” looks more like the business class section of an airplane, with curtains in between the faux leather recliners. You can close yourself in or leave the curtain open. There are televisions, and Dr. Cohen said that the nurse will bring you a DVD player if you request one. It seemed pretty quiet on the morning I was there. An 80-year-old man (I know because he mentioned his age a few times) was also doing the “intro tour” that morning. He was a real card, flirting with all the nurses and telling jokes and making other saucy remarks (some about his pants, some about his meds). He’ll definitely liven up that joint, though I’m not sure I’d want to be his chemo co-passenger every time. I’ve heard that you really get to know, and even become friends with, the others (patients and nurses) who are on your schedule. We’ll see what my alternate Thursday morning group looks like.

I am still planning to get a second opinion at Sloan Kettering, though I feel very comfortable with Dr. Cohen's advice, which matches what I've found in my own research, and with Dr. Cohen himself, who is very straightforward, clear, and available. My appointment at MSK is on 3/21. I particularly want to know if there are any clinical trials going on at MSK with triple negative cancers. Dr. Cohen said that some of his patients participated in one recently, but it was for node positive patients, not node negative like me. According to the statistics that Dr. Cohen showed us, for a 30-year-old with a Grade 3 tumor, less than 2 cm, lymph node negative, the ten-year survival rate with surgery and radiation is 70%. Adding chemo increases it to 86%. That's pretty good, I guess, but it would be even better if I could have hormone therapy. Damn! I was there were something targeted right now for us trip negs.

On the positive side, chemo works best on fast-growing cancers like mine, especially now, if there are any stray cells floating around my body. (Of course, it's possible that I have absolutely no cancer at all in my body right now.) One of my favorite quotes about chemo on the breastcancer.org site: "Cancer cells' growth is unwieldy and uncontrolled—they just don't have their act together like normal cells do. When normal cells are damaged, they are like a big city with a fire and police department and trained emergency squads to come and 'put out the fire.' Damaged cancer cells are more like a disorganized mob with a bucket." —Marisa Weiss, M.D.

So, in short, I'm not afraid of chemo and its side effects (which I will outline in a future post). I'm glad that I have it as a treatment option. I'm glad that I have an excellent chance of far outpacing that ten-year mark.

Special Delivery

Yesterday I received a very special delivery from Erin, my dearest childhood friend. Three loaves of "booby bread"! Now let me explain.

In third century Sicily, as her legend is told, a young woman named Agatha vowed celibacy as a symbol of her devotion to Jesus. Unfortunately, the beautiful Agatha attracted the unsavory attentions of one Quintian (various spellings are given for this name), a government official, who was equally determined to possess her. Quintian attempted all manner of blackmail and torture to strong arm her into marrying him (and later, to punish her for her refusal): she came before the courts (Christianity being illegal at the time) and was thrown into jail, was commited to a brothel, and was punished on the rack, made to roll over hot coals and sharp stones, and more unbearable abuses. At one point, her breasts were crushed and sliced off, which is why St. Agatha is considered the patron saint of breast diseases. In paintings, she is often depicted as carrying her breasts on a tray, an image that to many resembled two loaves of bread; hence, the tradition of baking "Agatha loaves" to honor her feast day, February 5. Sharing the bread with family and friends is a way of asking for St. Agatha's protection.

And so, via Erin and Fedex, came my personal blessing from St. Agatha, in the form of three round loaves of cheddar bread. They look and smell delicious, though I'm not sure if I'm allowed to eat them? And they vary slightly in size, which indicates either: 1) the baker's confessed inexperience, or 2) her knowledge that after two lumpectomies, my girls aren't quite a matching set anymore. So perhaps she gave me a few cup sizes to choose from, or maybe the extra loaf is analogous to the birthday "pinch to grow an inch" - just a bit of extra luck. Hey, I'll take all I can get, and thanks, Erin!

My 80%

Thanks, Dawn, for giving me a reasonable goal: an average of 80% positive thoughts. And thanks, everyone, for reminding me in gentle ways that Life (and its unsavory cohort, the guy with the sickle) isn't fair, and it's okay to be angry and sad and scared and self-pitying about that (in the 20% non-positive thoughts that I'm allowing myself).

Also, I suddenly realized/remembered that I'm not the only one with problems (and, in fact, that although this is certainly my biggest problem right now, it's also not the only thing I need to focus on). From Brien's woman in a tree (Kathy's long story), to other members of my own family who are dealing the best they can with loss and illness, it has pulled me back out of myself to witness the difficulties that others are facing and do what I might to support them, too, in my words, my actions, or simply in empathizing with my fellow human beings and the struggles and successes that define our lives.

So here, then, are some of my recent 80%:

• Big news: my pathology report from last week's surgery came back with a negative lymph node (yee haw!) and 2 itty, bitty, tiny spots of cancer in the extra piece of breast tissue removed. That's good, because they went back in, found just a little bit more cancer, took it out, and are confident now that there is a clear margin all the way around the tumor. Of course, there is no way to guarantee that one cell (and one would be all it would take for another tumor to form) didn't break away from the tumor and hide out in my breast or even another part of my body. That's what the chemo and radiation are for.
• My birthday gathering on Saturday was such fun, just what I needed. The Forbidden Foods spread included raw milk cheese, salami, nuts, dried fruit, garlic aioli (for dipping roasted potatoes, green beans and cherry tomatoes), honey and cider jelly, fruit salad, our cocktail special of the evening (chocolate martinis - yummy and potent) and my own dessert invention: raw cookie dough truffles. Thanks to my friends who came to party with me, from the Upper West Side to Washington, D.C., and I expect to see all of you at my I'm-Through-With-Cancer anniversary party next year - that will be something to really celebrate.
  
• Sappha blew it out of the water at her swim meet Friday evening, setting personal best times in four of five events, including a 5 second shave from her 50 free and 6 seconds from her 100 IM. Someone hose that kid down 'cause she is smokin'!
• A friend of mine is learning to read palms from a "batty old lady" (her words) and gave me a free sample. It seems that I have a very long, strong lifeline, with a few breaks that indicate trials and obstacles to overcome, but the line itself curves all the way down and around the base of my thumb, which predicts many, many years yet to come. She said some good stuff about my marriage, too, but I was too focused on the lifeline part to pay much attention. Um, could that be a bad sign? Mental note: give my husband an extra hug today.
• Finn is just about ready to enter the Crawling Big Leagues, as he has figured out the how-to and is picking up speed. We dropped the matress in the crib this week when he started pulling up. He's getting used to his new teeth, which are surprisingly sharp, is passing toys back and forth between his hands, and has made another discovery, too, making diaper changes all that much more fun. Oh, and also, he's just really, really cute!
• The receptionist at the dentist's office called to confirm my appointment and asked how I was doing with my cancer treatments. I told her about it last week, in case it made any difference to the dentist, and she remembered and asked how I was! I thought that was really nice.
• I have a good feeling about yesterday's New York Times crossword puzzle. I think I'm going to finish it without looking anything up on the internet. Cross your fingers for me - it will be my first Sunday!
• I've made a list of the things I'll need for chemo: special mouthwash and toothpaste, hats for sleeping and wearing outside, gloves (for cleaning and wearing out in the germy city), massage oil (for dry skin), sugar-free ginger or lemon candies (for nausea), plastic eating utensils (to reduce the metallic taste), and so on. So I can do some shopping this week while I wait for my doctors' appointments (see below, on the 20% list).
• Oh, and here's another biggie: Amanda and David's wedding was terrific, everything that she wanted it to be, and I hear that pictures (and favors!) are on their way to me. I can't wait to see how beautiful she looked.
  

Now my 20%:

• I can't get an appointment with the oncologist until next Thursday, 3/15. I was really hoping to be almost ready to start chemo by then! But maybe there will be a cancellation and I'll be able to get in sooner. In the meantime, I have post-op tomorrow with Dr. Tartter, a dental appt next week (I'm supposed to get a professional cleaning before chemo starts), and my second opinion appt coming up at Sloan Kettering. Things are moving, just not as quickly as I would like.
• I chickened out on the haircut this weekend, deciding that I wanted to enjoy my long hair a little bit longer. Maybe that isn't really a 20%, though. Just means that I wasn't quite ready for a haircut, right? I got a pedicure instead!
• My first cold core in absolutely months. Of course, I have been under a lot of stress, but I fear this doesn't bode well for the chemo side effects.
• Our cable company. Do they have to be so rude?

Final score, Positives: 9. Negatives: 4. That's only about 70%, but I suppose I'll get better at this as I go. (I could have raised the ratio to 75% by leaving out the cable company, but she was VERY rude.) Thanks again to everyone who boosted me up last week, and feel free to post your own 80% in the comments - good news will be celebrated by all!

Warning: Not Happy Thoughts

Last night, David got cupcakes and Prosecco to celebrate my birthday, and we ordered Indian food from my favorite place (love those samosas!), and we spent some quality time with Sappha watching American Idol (the girls are smokin' the boys this year), and then we popped in Bull Durham, which I had never seen before and which a friend who was cleaning out her massive video tape collection gave to me, along with several other movies, because they don't have a VCR anymore.

Okay. So we were watching the movie, which further cemented my opinion that Kevin Costner just isn't a good actor, although he is very good looking, and for about an hour I completley forgot that I had cancer. It was so nice, just curled up on the bed with a red velvet cupcake and glass of wine and my loving husband, being the young, happy couple that we are. Just being together, with our beautiful kids sound asleep and everything going our way. And I didn't think about cancer once, for maybe the longest time that I've not thought about it since the dx two weeks ago.

And then all of a sudden I remembered that I had breast cancer. And I remembered that we are a young, happy couple, but that we're not just that, and everything is not going our way, and we have this horrible, horrible thing hanging over us. Hanging over me. And in an instant, my stomach dropped, and I got this ominous, cold, sweaty feeling, and I thought I was going to throw up.

People keep saying that I'm strong and strong-willed. That I should be positive, think of the best possible outcome. That I should pray. That they are praying for me. That they're there to help with anything I need. That lots of women are diagnosed with bc and survive. That their own aunt survived. Or mother, grandmother, sister. That the treatments are so much better now than they were even a few years ago. That I'm lucky to be in New York with the best possible medical care. That I'll beat this. I'll live.

Here's the thing though. No one really knows that. I don't know that. My doctor doesn't. And maybe being strong-willed helps. Maybe prayer does. Maybe thinking positive thoughts will help keep this beast from growing and spreading inside of me. Keep it from killing me. Maybe I'm doing everything I can do. Maybe there's nothing I can do. Maybe if I give up alcohol and fatty foods for the rest of my life I won't have a recurrence. Maybe if I get my breasts removed. Maybe I'll be one of those stories, too - that I (someone's mother, grandmother, aunt, sister) had bc and lived to be 101.

No one knows. I don't want to sound cruel or ungrateful to the very people who have rallied to support me. I know that no one knows really what to say, and that everyone is trying to say something positive, to boost my spirits, to help. And that when they say to me, "You're going to make it," what they're actually saying is, "I really want this to be true," in the same way that when I offer comfort or advice to another bc patient I am actually comforting myself at the same time. But no one knows for sure. And sometimes I feel so frustrated and scared and sad and, yes, mean, because there are plenty of other stories that no one shares but we all know they're out there: of women my age, or younger, or older, who succumbed to this disease. And they were probably strong, too. And they probably thought positive thoughts. And people probably prayed for them. Just like me. And no one knows why they died and others lived, or why their cancers grew and spread and others didn't, or why they got cancer and someone else didn't, or why whole families are genetically predisposed to bc and other families have no cancer at all. And no one knows why I have cancer, or if I'll beat it this time, or if it will come back, or if I'll die of it now or 30 years from now or never.

There are moments that make my heart cry out. Like when Finn looks at me sometimes, and he knows me, and wants only me to hold him, and I see the purest delight and love in his little eyes, and I think, if I have only a year left, or a few years, he won't even remember me. Or when I see Sappha playing with him, and he's squealing and she's giggling, and I think that maybe I won't see them grow old enough to really become friends. And Sappha, my big girl, what if I don't see her as a beautiful young woman, watch her graduate from college and get married and have her own children? What if she has to do all of that without a mom to talk to? And what will David do? This is almost too painful to even write. What if the dreams we had of being old together don't come true? Would he marry someone else? Would he be happy again, eventually, without me?

I know that this is all part of the process, and these emotions are all normal and "okay" to have. I know that I am loved. I know that I will go through chemo, and radiation, and maybe a mastectomy, and I will do all that I can and probably I will live, and maybe I will never have cancer again, like lots of women. Those are my rational thoughts. And mostly I have been feeling okay since the second surgery, buoyed by the doctor's confidence and the prayers and encouraging words of my family and friends and support group. And many times I have been happy, and sometimes I have forgotten about cancer. And then other times, like last night and this morning, I feel like the world is crashing down again (or still) and my darkest thoughts just sort of gnaw away at my insides. And at those times the survival stories and the comforting words from others chafe and seem empty, and I feel very fragile and uncertain. David said that we need to try to enjoy each day, as many as there are, and I got angry - was he trying to say that I don't have much time left? Talk about positive thinking! But of course he wasn't saying that, just that life is uncertain by its very nature, and that no one knows what the future holds, and don't we want to be happy in the moment, rather than fearful of what might happen? Well, yes. But...

I hope I didn't hurt anyone's feelings by ranting like this. Everyone has been so loving and supportive; I appreciate all of you. A few people have told me that I need to worry less about others right now, less about my roles as mother, wife, daughter, sister, and more about myself and what I need to get better. That I shouldn't be afraid to be more assertive about telling people what I want and need from them. I don't really know what to ask for. Mostly I'm just trying to keep my life as close to the track it was on before it derailed a few weeks ago. I don't know how things will change over the next weeks and months. I just know that when I hear, "It's going to be okay," I really want it to be true.