Category Archives: Chemo

Toxicity Troubles | The Aftermath of Cancer Treatment

GBCA BCP Retreat 2017

I had the pleasure of presenting to the Georgetown Breast Cancer Program on behalf of the Georgetown Breast Cancer Advocates a couple of weeks ago at their annual retreat. In my brief talk, I hoped to encourage them to engage patient advocates as part of their research team. I was sure to point out that as advocates, we try to represent more positions than just our own.

Anytime I have a forum to speak “on behalf of the patient voice,” I try to be sure to incorporate more voices than just mine. I don’t like the idea of a few elite patients doing all the talking when researchers, clinicians, and pharma decide to engage patients. And so, when I’m planning a talk, I try to ask for input.

Next week I will be part of a session at the Society of Toxicology shedding some light on the many toxicities that patients face as they undergo cancer treatment, and those that continue for years, or follow them for their entire life. But I need some help! Do you have any burning questions or things that you think need to be considered more than they are? What would you like researchers to address going forward? Please feel free to comment here, on Facebook, or email me– I really do want to be sure I address YOUR concerns!

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Cancer FOMO

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I was introduced to a new cancer friend last week– a friend of a friend of a few different friends of mine. They all pointed her towards me because she, too, has triple negative breast cancer, and she had some more specific questions about treatment of TNBC. She had consults set up with a few different oncologists and a pretty thorough list of questions to ask them. She asked me about my treatment and what she might expect when she talked to doctors.

Of course, I told her what I’ve said thousands of time– I’m not a doctor. But I told her about the treatments that I’d had– dose dense AC followed by T. It was standard of care at the time, and it gave me the best results that one could expect– a pathological complete response (pCR). They knew where the cancer was before I was treated, and when I had surgery, the pathologist couldn’t find any cancer cells left. They were all dead. There is still debate whether pCR is a good surrogate for overall survival (OS)– whether having a pCR means anything about whether the cancer will come back and how long you will live– but it’s still taken as a good sign.

As I wrote to my new friend, I told her she might ask about the addition of a platinum to her chemo regimen. Since I’ve finished chemo, studies have been published revealing that more patients have a pCR if they receive a platinum in addition to ddAC-T, so I’d want that if I were her. I have another TNBC friend who didn’t have a pCR, so she is now on capecitabine (Xeloda) as a sort of preventative agent against a potential recurrence, so that might be a consideration for my new friend, too.

Let’s be clear, even without a platinum, I had a pCR, which is what those studies were going after anyway. And with a pCR, there was no reason for me to have any further treatment with potentially undesirable short term side effects and even more concerning, potential long term side effects. Yet I was left sitting there with a terrible case of #FOMO. Fear Of Missing Out. In the 3+ years since my diagnosis, there are different treatments. We all want the latest iPhone, the newest features on a car, and to eat at the hot, new restaurant. So of course, I want the best, newest cancer treatment. As awful as more chemo is (infusion or oral), part of me wants more.  The evidence based part of me knows that I’ve done everything that has been demonstrated to be beneficial to me, and 3+ years out, I have a pretty good prognosis. But thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO. Maybe it’s because I worry that one more thing might be all that’s standing between me and the gold standard of all clinical trials: OS. Overall survival is really what I’m after, because regardless what I think about cancer treatments, I know that I have major #lifeFOMO. I don’t want to miss a second.

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Ten Things Breast Cancer Taught Me

10 ten things breast cancer taught me run lipstick chemo

Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…

  1. You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos– trompe l’oeil nipples!
  2. You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
  3. You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
  4. You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
  5. You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
  6. You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
  7. You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
  8. You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
  9. You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
  10. You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.

The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.

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Summer Writing | Women’s Running Magazine

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I can hardly call it writing, but the next summer project on my list just showed up on newsstands! The first thing I did when I got a request this summer from Women’s Running magazine was call Sally to make sure that I was right– this is a legit magazine! Like one you can buy in stores and everything! They asked to feature me in their “Bloggers on the Run” series for October. Because breast cancer. Ironically, they took the text from some interview questions they asked me, and there is no mention of breast cancer in the piece! But since it’s sprinkled in between pictures of women showing off their pink running gear and pages of ads featuring pink ribbons, I’m guessing anyone who’s interested will make the assumption. I didn’t really get to share anything new or shocking, but it was fun to see my face (on a bald head, no less!) in a running magazine (who’d have ever guessed?!?) and perhaps it will give a runner facing chemo the confidence to keep on running. Head to your newsstands and check it out or read it here! (I picked up my copy at Barnes and Noble, since the selection at my local drugstore was too small to carry anything not related to home decorating or fashion and makeup!)

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Field Trip: FDA Breast Cancer Patient Focused Drug Development

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I think it all the time.  I am so happy to live where I do.  Last week, after running a couple of errands, I headed up to spend the afternoon at the FDA White Oak campus in Silver Spring, MD. `I didn’t have to hop on a plane, get a hotel, and try to arrange my family’s schedule so that I could be gone for several days.  I just headed over after stopping at Tyson’s. It’s a brand new campus and everything is so fancy– much different than my visits to the FDA buildings that were on the NIH campus when Clay worked there.  The FDA is conducting meetings over a five year period on different disease sites, inviting patients to influence the drug development process.  I was there for the breast cancer meeting (obviously!) along with roughly fifteen to twenty other patients and patient advocates.  The rest of the audience was made up of academics and pharmaceutical representatives who were eager to hear our comments.  (They were not permitted to participate in the discussion, they were just there to listen.)
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I thought the meeting was well organized and well run, and the FDA staff and reviewers listened very attentively and asked thoughtful questions.  Even when the discussion started to get off course, they managed to respectfully and gently guide us back– and that’s no small feat!  I had three main takeaways from this meeting.  First, I continue to be in awe of the passion and energy of the metastatic breast cancer community.  I sat with several ladies from the Metastatic Breast Cancer Network and the Metastatic Breast Cancer Alliance.  It makes sense that the women who were chosen to be on the panels were mostly metastatic patients– they’ve had far more treatments, so of course they’ve had to deal with more side effects.  Many of these ladies talked about overwhelming fatigue, pain, and the stress of trying to make sure they’ve scheduled their “life” to fit within their two or three week chemo cycles.Their cancer cards are still shiny– though be it a bit worn– and no one would call them selfish for wanting to stay at home– either to feel sorry for themselves, or just to spend as much time as possible with their families.  And yet they traveled from Chicago, New York City, Texas, California– all to share their stories, hoping they will make a difference, if not for themselves, for those yet to be diagnosed with breast cancer.  They spoke with candor about things most people would rather hide– diarrhea, depression, sexual intimacy.  They shared the joys of being without evidence of disease after treatment for multiple metastatic lesions, and they shared the disappointment of recent disease progression. While I know one person’s story is always just one person’s story, I was reminded of the power of an individual’s personal narrative.

The other two things that struck me were two of the questions posed by the FDA panel.  They wanted to know from the patients– What would our dream drug look like? Um, one pill, no side effects, totally and instantly curative.  OK, I know that’s not what they were going for!  And that’s not what anyone said, either. The most poignant answer came from Shirley Mertz, from the Metastatic Breast Cancer Network.  I’m totally paraphrasing here, (apologies to Shirley if I botch it!) but she pointed out the need for more endpoints in new drug trials.  Most trials for metastatic disease look at tumor shrinkage as an endpoint.  (Makes sense, it seems like a shrinking tumor is a good thing.) But she encouraged the FDA to consider no new metastatic lesions– tumors– as an endpoint.  She said most metastatic patients feel like they can handle their current level of tumor burden, what they all fear is the spread to new organ sites.  Her dream drug would stop the tumors in place, prevent them from going anywhere new. She eloquently presented a perspective (and idea) that I found very interesting. I really love how excited she was to share her ideas with the FDA– she wants them to change the way they do the trials and she wasn’t afraid to tell them! (And she did it with the biggest smile, you could tell she reveled at the opportunity!)

The final question that impressed me: What’s’ your deal breaker? I didn’t love that the panelist started talking about hair loss, as if there were a lot of  women who A) didn’t know that chemo causes hair loss and B) wouldn’t take the needed chemo treatment if they’d known. ??? But once I got past that, I thought it was a brilliant question.  The FDA sees a list of potential side effects for every drug, but a patient’s perspectives on how to judge those side effects could make a difference in how they look at the applications. For the most part, the discussion was pretty clearly split.  First treatment to stages I-III: there are no deal breakers.  Theses women see the treatment as potentially curative and so are willing to endure most anything for a limited time to avoid feeling later like they didn’t do enough.  Once you move on to long term hormonal treatment (anti-estrogen, aromatase inhibitor, ovarian suppression), it gets tougher, this is five or ten years of a drug for a women with no evidence of metastatic disease. Young women in particular often struggle with the side effects– early menopause, sexual side effects, depression, weight gain. For some women, these side effects are so extreme that they become deal breakers and they stop treatment.  Metastatic disease is obviously a different ballgame entirely.  The Metastatic Breast Cancer Network describes the routine simply as “Scan, Treat, Repeat.” For the most part, this cycle is repeated every three months.  Women who are fortunate to live longer than the average three years after metastatic diagnosis have often undergone numerous treatment regimens. They stay on one until their disease progresses or they are unable to cope with the side effects, and then their doctors search for yet another option.  Their deal breakers are very different, and they seem to fall into two groups. The young mothers I’ve encountered with metastatic disease seem to be willing to do just about anything, to endure any side effect that is not actively threatening to claim their life before the cancer can.  They want one more day to see their babies grow up, to get to help their daughter buy a prom dress. They just want one more day, and they are willing to suffer any amount of pain to get it.  At some point, though, quality of life becomes a much larger argument. Many present, women who didn’t have little ones running around the house or children about to graduate from high school, spoke of their deal breakers– they were tired of all the side effects and would not choose a treatment that promised them little additional time at a great cost to their body.  One woman spoke about choosing a treatment that had a more convenient dosing schedule– an injection once a month over biweekly, three hour infusions.  Sadly, the financial cost of treatment was mentioned several times, one women adding that she wouldn’t want a drug that affected her so adversely that she couldn’t keep her job– and therefore her health insurance. They emphasized that quality of life could be more important than length of life in the decision making process, and while rough side effects shouldn’t keep a drug off the market, we shouldn’t settle for drugs without considering their toxicities.

I won’t say that I think this afternoon solved all the problems that exist in the treatment of breast cancer. I wasn’t sure what to expect, and frankly, didn’t expect much. I thought it would probably be the FDA’s way of checking off a box– yes, we talked to breast cancer patients. Done. I know that cancer drugs are still going to have some pretty rotten side effects, and my talking about them won’t make them disappear. Yet I feel like the FDA panelists were truly listening, and that our discussions might influence what level of side effects they find acceptable. Perhaps they will consider adding new trial endpoints, or they will require more data on dosing to stop the “more is better” philosophy that is common in cancer treatment. The meeting is over, but the public docket is open for comments until June 2, at which time they will be summarized for the permanent record. If you’d like to add your comments, please head to their page and do so. (There are some specific questions that they want patients to address, found about halfway down the page under the “Public Meeting Information” heading. You can add your comments by clicking the blue “comment now” button at the top right of the page.)

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Little Reminders | Peripheral Neuropathy after Breast Cancer Treatment

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Back when I talked about my cancer book, I mentioned that, among other things, I used it to keep track of my neuropathy symptoms.   Peripheral neuropathy– numbness in the hands and feet– is a common side effect of taxol, one of the chemo drugs I was given.  My oncologist had told me that it was something that  I needed to keep track of– it is one of the most common reasons for dose reductions or treatment delay during taxol treatment. She stressed that I shouldn’t worry about a little tingling, but to be sure to let her know if it was causing such a problem that I was dropping things or having balance problems.  (Yikes.) Fortunately, it never got that bad.  It started in my right foot– first the big toe and gradually over the eight weeks it crept all the way to my pinky toe, causing my entire fore foot to feel funny for an hour or so at a time.  Eventually, I noticed it in the fingertips on my right hand, too.  I should point out that it doesn’t hurt.  It’s not that “pins and needles” feeling when your foot falls asleep and it seriously hurts to put weight on it.  It’s more like when you’ve been outside in winter too long. (Snowy, 18 degree days like today. I’m over you, winter…) That’s how my toes felt– when you don’t really have frostbite, but even after your toes start to warm up, they still feel really weird.  A little numb, and just plain weird.

Thankfully, as my blood counts ventured up and my hair began to grow back after my last chemo infusion, the neuropathy began to subside, too.  Fewer toes and fingers were involved, it didn’t happen as often, and it didn’t last as long each time I noticed it.  I’d heard about some people who struggle with chemo-induced peripheral neuropathy for years, even forever, but figured I’d be in the lucky symptom free group since my symptoms started to dissipate so quickly.

Lately, though, I’ve been noticing that weird feeling in my right foot again. (Has it always been there and I’m just noticing it, or is it new?  Not sure.)  Usually just in the big toe and the ball of my foot, and it doesn’t last for very long.  Again, it still doesn’t hurt, and it doesn’t affect my ability to walk at all. Honestly, it’s probably the kind of thing that I wouldn’t really even notice if it weren’t associated with cancer in my mind.  But my brain has been trained to notice and note all kinds of super minor annoyances. Because cancer. Thankfully, it’s not an indicator of recurrence, it’s more like a lasting reminder of the fact that chemo does some serious damage.  Which, I guess, is just what I wanted the chemo to do, so that’s good, right?  They say (I really hate that phrase, “they say,” but there it is…) that most chemo related side effects subside relatively quickly after treatment, and rarely linger past two years.  Neuropathy is the exception.  Since mine is still hanging around, I’m guessing there will always be times when the tingling in my right foot is just another little reminder of breast cancer.

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On Sick Leave and Going Solo

going solo PET scan breast cancer

The teeny tiny lead lined room where my radioactive self got to hang out for a while before my PET scan

It’s been two years since I finished chemo, which means that I’ve had the opportunity to chat with lots of ladies who are going through it themselves since then.  Chatting about all the trips to chemo and the appointments with the oncologist and surgeons, many ladies have commented that their husband is coming with them to every single one.  I don’t usually offer anything at this point, but inevitably, they ask.  “Did your husband come with you to every appointment?”  I think they are all shocked when I answer no.  He did come with me to the appointments where they suggest someone come.  (That’s never good when a doctor suggests you not come to the appointment alone…)  He was there at the first appointment after the diagnosis with the surgeon, the “big” appointment with the oncologist where we discussed treatment strategies, and the appointment where we talked about surgical options.  And of course, he took time off anytime I had surgery.  But otherwise, I went solo to the appointments and took a friend to chemo.

So this is not the point in the story where you should feel sorry for me because my husband didn’t care enough to take the time off to come with me.  In those first “big” appointments, he came along and the doctors talked to both of us, encouraging us both to ask questions.  But breast cancer is my thing, I already speak that language.  What they were saying made sense to me, there were no surprises because I was expecting it all.  I didn’t need him to take notes so that I could look things up later (that’s a great reason to have someone come along, by the way!) and he knew that I would remember the details that I needed to pass along to him.  I dragged Sally along to a couple of the early diagnostics, but quickly learned that she mostly would have to wait a long time by herself.  The waiting areas for mammograms, MRIs, and especially PET scan keep the patients separate, so there would have been a lot of sitting solo– probably not worth burning sick leave.  And I have been blessed to have so many wonderful friends, it was easy to find someone to come along with me to chemo.  Clay always offered to go, and I know I wouldn’t have had to ask twice for him to leave work to join me.  And yet, I always assured him that I was fine to go on my own.

There are a lot of “what ifs” in cancer.  What if chemo made me really sick? What if it was too hard for me to keep up with the kids? What if it was too hard for me to take care of myself? And of course, there was always that lingering, always unspoken, “what if.”  What if the treatments didn’t work and I finally ended up with my body as a battleground, managing the effects of ever increasing treatments while the cancer wreaked havoc on my vital organs?  My liver, my bones, my brain? Then I would need help.  Lots of help.

I can remember years ago being in the choir room at church, where federal workers were asked to consider donating leave to a member whose husband was nearing the end of his life.  She was running out of paid sick leave, but other employees could transfer theirs so she could continue to be paid while she stayed at home with her dying husband.  That memory floated in and out of my mind all throughout my treatment.  There might be times when I would really need Clay to drive me to appointments, to keep track of medications, just to help me through my day.  I hated the idea that he might feel torn between being able to provide for our family and being able to care for our family.  I wanted him to go to work while he could, so that he didn’t feel like he had to if I really needed him.

Didn’t mean for this post to be a downer.  I was happy going to the appointments on my own.  I was caught up on local interest stories, the latest fashion, and the newest makeup trends thanks to all the magazines I read in waiting rooms.  (I’m a bit behind the times now, I’m afraid!) I really liked all my doctors, and was happy to chat with them. As soon as I left, I would call Clay, my mom, and Sally to give them all the latest updates.  And then I would usually make one more call to whomever I was meeting for coffee or lunch to let them know I was on my way. Because even though I didn’t mind seeing the doctor solo, hanging out with a friend is always my favorite thing!

One thing to remember, though, especially if you are going through treatment– everyone is different, so we all “do cancer” differently.  I loved taking a girlfriend along to chemo– three or four hours to chat and catch up, discuss Downton Abbey, look at magazines, and giggle like girls do. I’ve had friends who loved spending that time with their husbands, looking at it almost like date time.  Maybe not the most romantic, but time is time, my friends.  And I’ve had friends (mostly those with toddlers at home!) who cherished being able to go to chemo completely alone. We don’t all have to do it the same to do it well.

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Gifting a Friend with Cancer

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It seems that one of the most frequent questions I’m asked is about how to gift a friend with cancer.  I have such generous friends who know me so well who gifted me with such thoughtful tokens.  The last time someone asked me this question, I started to list for her all the things people had given me and things that I’ve given others since.  But it occurred to me that the perfect gift for me might not be the perfect gift for someone else.  There aren’t a whole lot of things that someone going through cancer needs.  Yes, once your hair falls out, you’ll need a few good hats, so that’s a  nice place to start.  But really, gifting a friend is about making her happy.  So what makes her happy? If chemo makes her feel badly, then probably don’t buy food or smelly candles.  And if she’s trying to work and is exhausted, then don’t insist on taking her out for dinner.  For me, the best gift was always time.  An easy run, thrift shopping trip, or coffee or lunch date was exactly what I wanted.  But if you don’t live close to your friend or your schedules just won’t match up, here are a few ideas.  Just remember, keep in mind her personality– give her something that will make her smile!

  • Cupcakes.  I got bunches and loved every bite!
  • Starbucks card. If you can’t go with her to coffee, you can help her take someone else!
  • Jewelry.  Of course, who wouldn’t love a little blue box? Alas, I had to earn that one.  But several friends know that a pretty bracelet or pair of earrings always brightens my day.  Even almost two years later, I still smile, remembering the thoughtful giver when I wear a special gift.
  • Something completely frivolous.  I would never buy an Us Weekly magazine. Not that I am above being sucked in by salacious celebrity gossip. But I would feel guilty, I should spend my money on something more redeeming. But when it comes from a fun friend? What an indulgent way to pass the time!
  • After I had my mastectomy, the neighborhood ladies took me to get a pedicure.  Such a fun outing! A gift card for a pedi would be a great gift for a friend after surgery, but a mani/pedi is off limits while she’s on chemo.  Maybe a gift card for a massage instead?

Of course, especially if you live nearby, things like childcare and dinner are always appreciated.  Pitching in with some friends for an occasional visit from a house cleaning service would be amazing.  But really, what I wanted from my friends more than anything was their friendship.  Pay attention to her– what makes her happy? What is making her smile right now?  Lip gloss, twizzlers, a sassy tee, or her very own cancer card.  (Man, I wish I’d seen those back when I was in treatment.  I would have whipped that bad boy out.  I wonder if it would have gotten me out of a parking ticket if I threw it in my dash instead of the parking meter receipt…)

I had a friend who was so sick during her chemo, the only thing that she wanted to eat was an Egg McMuffin, so I would drop one off every once in a while.  When I was diagnosed, she had moved away, but sent me the sweetest card with a McDonald’s gift card. You should have seen the smile on my face.  Clay thought it was the strangest gift ever, I don’t even really like McDonald’s. But I understood the gift, and it made me so happy.  Another great gift? The back scratcher a friend picked up after I complained that percocet made me itchy and I couldn’t scratch my own back after my mastectomy. Neither of those gifts came in a fancy blue box, but they both showed me that my friends were really listening to me and thinking of me. As much as I love me a little blue box, I’d prefer a thoughtful little gift any day.

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The Cancer Book, Part Two | Keeping Track of My Breast Cancer

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Once I was in posession of my perfectly un-pink, spiral bound notebook, I set to filling its pages.  In the early days, it was merely a to-do list: long distance friends to call before anything went on facebook– that’s no way for them to find out I had cancer, letters to write– authorization for friends and family to pick up my kids from school if I were unable, prep for diagnostic procedures.  I carried it with me everywhere, even to the bus stop.  Nurses would call all the time, with very specific prep for upcoming procedures or with more appointments for me, and I liked to have my book so that I could write everything down in the same place.

My cancer book evolved, becoming a place for me to write questions to ask at my next doctor visit.  I was always careful to leave space for the answer below the question so that I didn’t have to turn the page back and forth between questions.  When I sat down in her lovely office for my very first meeting with my oncologist, she saw me pull out my notebook and told me that I didn’t need to worry about writing things down, she would write down everything I needed to know while we chatted and I could take her notes with me.  I tried not to take any notes the first few minutes, but I couldn’t help it.  I’m so glad she didn’t challenge me– taking my own notes was part of my process.

During chemo,  I got pretty hard core with my cancer book.  Each day, I would draw a horizontal line to separate the page for a new day.  Besides the day of the week and the date, each day was labeled to help me track my response to chemo.  “R2D1″ corresponded to the first day of the second round of chemo.  On the left for each day was a column of the meds I needed that day with checkboxes to mark when I took them.  Since I was supposed to take my temperature each day to catch any infections early, I always left a blank where I could record my temperature.  I made notes about my sleep– how long I napped and how well I slept at night.  I would record any symptoms or reactions, things like hot flashes and bone pain, and when I started taking taxol, I also had a section where I recorded the extent of my neuropathy.

Now that I write it all, that seems like a lot.  It really wasn’t that much, but the repetitiveness really helped it become second nature.  Having it all written down made it easy each time I headed to the doctor, I could quickly give her solid details and she could assess if there were things that we should change.  (We changed my meds several times based on how I was feeling.)

Out of chemo, beyond surgeries, the cancer book doesn’t live in my purse anymore. While I don’t write down every single headache, if I notice something a few days running, I make a note. It’s really reverted to the stage where I write down questions or concerns for my next appointment.  Whether it was during chemo or now, in that crucial stage of survivorship where the fear of recurrence is always lingering just beneath the surface, it’s amazing how much easier it is to see patterns emerge when looking at pages in a notebook instead of trying to recall the details on my own.

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Chemo: Before or After Surgery | Neoadjuvant Chemotherapy

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It seems like I’ve been revisiting that morning in the surgeon’s office a lot lately.  After we talked about the fact that I felt pretty sure I wanted a double mastectomy, my surgeon confirmed the other thing I’d been thinking– that I would need chemo. My oncologist would talk to me about the specific drugs I needed, but my surgeon told me that I would have the option of doing chemo before or after surgery.  Again, she advised me that neither option had been shown to increase overall survival.  Again, almost instinctively, I told her that I wanted neoadjuvant chemo– chemo before my surgery.

It’s not uncommon to have the opposite reaction. Many women have a “get it out” kind of reaction and want surgery as soon as possible. But I knew that the only reason a patient receives chemotherapy is if there is a chance that even one teeny cancer cell has escaped past the original (removable) tumor. I couldn’t handle the thought that even one little cell was setting up shop somewhere else, growing and spreading even more while my body was healing from surgery.  I didn’t want to wait a few weeks for surgery and then at least six more weeks to heal before I could start chemo.  My oncologist agreed that was a reasonable conclusion, but also pointed out that she liked the fact that it would enable her to watch how my tumor responded to the chemotherapy in vivo– that is, in living tissue.  (Discovering I was a scientist early in our first meeting, I wonder if she knew how much the words in vivo would mean to me as a scientist? In vitro studies– cells in a dish– are crucial to the research process, but artifacts come along with the artificial environment, in vivo studies have so much more validity.) With breast cancer, tumor dormancy is always a big fear– that there are some cancer cells that can somehow evade chemo and sit dormant for years before they begin to grow again and cause distant metastases that can take a patient’s life. We know, in general, that triple negative breast cancer responds well to the chemo regimen I would be taking. But if I had neoadjuvant chemo, we would get to see how MY triple negative tumor responded.   My oncologist and I agreed, if even one cell of viable cancer made it through chemo, I would do another chemo regimen after surgery.  If that one cell could survive, maybe another one, one that managed to escape my breast, survived, too.  Being able to see how my actual cancer cells responded to the drugs gave my medical team such valuable information.  The only thing the pathologist could find in the breast tissue removed was some scarring– he could see where the tumor had died.  Every last cell was dead.  Of course, there are never any guarantees, but a pathological complete response after neoadjuvant  chemo is the best scenario I could have imagined after hearing the words, “You have cancer.”  If I would have had surgery first, and then chemo, it’s likely that the chemo would have been just as effective.  But with the original tumor removed, I wouldn’t have the confidence that the words “pathological complete response” have given me.  It’s always good to be in a good place, but it’s so much better to know that you’re in a good place, so that you can truly appreciate it.

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