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.

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.

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.

Prescription: District Taco | PTSD and Cancer

 

logo_home-4f80f071f7676deaac829abe23bec48fSlowly but surely, I’m finding friends, groups, communities where women feel free to share their experiences with breast cancer. While every single woman is different, it’s remarkable how we are all united by our experiences. And while I know we all hate that someone else feels the same way we do, it’s so comforting to not be the only one feeling that way. It is so reassuring to realize that what you’re feeling is normal.

Last week, I took part in a discussion* on twitter about PTSD and cancer. Yes, that’s post traumatic stress disorder, but in survivors of cancer instead of war or natural disaster. I read up on PTSD before the discussion, and found that it is characterized by an extreme reaction to a trigger that reminds the patient of the trauma. I hadn’t ever thought about PTSD in terms of cancer. Apparently, many people will avoid driving the same route they had to go to chemo. PTSD interferes with some peoples’ ability to go to check ups with their oncologists because of the extreme reaction just to walking into the office.  Even a simple sound or smell can trigger extreme anxiety. While I certainly have more anxiety about little aches and pains than I did pre-cancer, I quickly realized that I am fortunate that I do not have full-on panic attacks as I drive past Virginia Hospital Center.  For those suffering from true PTSD in relation to their breast cancer diagnosis and treatment, the doctor moderating the discussion suggested the women slowly ease themselves back into the situation that causes their anxiety.  I guess forcing new experiences on top of the old trauma will eventually help neutralize the strong anxiety.

As I was listening to the discussion, they mentioned that many patients experience this avoidance without such an extreme reaction.  And then it hit me.  Maybe this is the reason I tend to avoid District Taco. When Sally and I discovered it, just after the taco truck became a full-fledged restaurant, I would find any excuse to eat there.  Since it’s close to me and not Sally, she and I would eat there almost any time she was in the neighborhood. Which included after many of my chemo and doctor appointments.  By the time I finished chemo, I really wasn’t all that interested in eating there anymore.  I know all about food aversions associated with being sick, but since chemo never made me sick, I figured that had nothing to do with it.  I’ve been back and didn’t have a panic attack, the food was as yummy as ever, but my enthusiasm is clearly dampened. But as it turns out, it’s apparently pretty normal that my brain shies away from things that remind it of chemo. And to retrain my brain, a real, bona fide doctor said that I need to eat more District Taco. (Kind of, but I’m going to run with it.) That’s a prescription that’s easy to take.

*The #bcsm chat occurs every Monday night at 9pm on twitter.

Missing Cancer | Doctor Appointments

The view from the exam table at my plastic surgeon's office
The very familiar view from the exam table at my plastic surgeon’s office

I was talking with a few women last week, all of us had been through breast cancer treatment or were in the midst of it.  We talked about lots of things, but eventually got to talking about our doctor appointments. During treatment, I might have one week with no appointments, but the next week, there was at least one appointment and one trip to chemo. Even after chemo was over, I had countless pre-surgical and post-surgical appointments.  I sat in this exam room once every week or two for months going through the expansion process that led up to my final reconstructive surgery.  Even after that final surgery, there are still lots of follow ups.

After spending so much time with kind, compassionate doctors, it’s like leaving friends behind once you’re released to visit only once every six months. Every woman who had finished her treatment could remember the strange feeling of saying goodbye to a favorite doctor and the staff. Being free of all those appointments and interventions should be cause for celebration! But as much as we all loved seeing the familiar faces, there is a reassurance when you see a doctor every week or two.  Even if they’re not doing any scans, even if you are seeing a surgeon who is primarily concerned with aesthetics.  There is reassurance to knowing that you are in the presence of a trained physician, surely if he says you’re ok, then you’re ok.  Even if it’s just a chat, surely the oncologist can see if there is a problem, right?

I truly enjoy chatting with my physicians, we usually talk far more about non-medical things. I feel certain that, had I met them under other circumstances, we would have been friends. But there is the subconscious, the unverbalized reason that it’s hard to wait six months before heading back to put on that awful “open in the front” paper gown. There something so reassuring about hearing a professional tell you everything is ok.  So now I’m hoping that it’s reassuring enough to last for six months, until my next appointment.  I definitely didn’t recognize it at the time, but I really do miss all those appointments.

This post is part of a series of what I’ll miss from my time as a cancer patient.  I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers.  I don’t mean to offend by making light of a serious subject.  These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

Because Someone Else said, “Yes” | Participating in Research Studies

I’m really enjoying being a part of the patient advocacy group at Georgetown. Each meeting, we discuss many topics, and I always enjoy when the clinician who is part of our groups talks about the new clinical trials and research studies  that are available for breast cancer patients at Lombardi. Frequently, clinicians and researchers will ask us to help them improve recruitment for their studies.

People who are diagnosed with late stage disease are frequently eager to participate in a study– a clinical trial– with the hope that helping test some new drug will cure them. Of course, that’s always a possibility. And for that hope, they will usually gladly go through extra biopsies, blood draws, hair pulls (not even kidding!), and endless paperwork.  All those extra steps are a much harder sell to a woman diagnosed with early stage disease, whose participation in the study won’t get her anything other than standard of care and all that extra stuff to allow researchers to amass data.

But a woman in our group at Georgetown had been speaking to a group about clinical research studies, and something that she said really stuck with me. “I’m here because someone else said, ‘yes.'” Such a simple, profound statement. Breast surgery has come a long way, and the introduction of Tamoxifen, aromatase inhibitors, and Herceptin, which target specific tumor types, have improved treatment options and survival for many patients. Still, some breast cancer patients will recur after treatment, and figuring out who will recur and how to prevent that recurrance is a growing area in research. There is a lot of excitement about the new “Georgetown Method” which could allow doctors to grow a patient’s actual tumor cells quickly in the lab and treat them with a variety of drugs to see which treatments will be most effective for that specific patient, preventing recurrance and substantially increasing long term survival. (Read about it in the Lombardi Magazine starting on page 10.) Yet, for all these advances, and for all those that are to come, patient involvement, often without any promise of personal gain, is so crucial.

Especially for those receiving treatment at a teaching hospital, there are many opportunities for participation in research studies. Right after being diagnosed with cancer, a patient has so many decisions to make, appointments to make and keep, papers to fill out.  And since many studies seem like a lot of work for the patient for mere data collection without the promise of any wonder drug, it is easy to see why a patient would be reluctant.  If there’s ever a time to be selfish, it’s when you have cancer, right? And yet, many women with breast cancer have chosen to put away their cancer card and give up that right to be selfish. Their willingness to participate has given doctors invaluable information that continues to impact the way patients are treated. So to those women who have taken the time, dealt with all the extra assaults to their body, I say thank you. I am here because they said, “yes.”

Breast Cancer and My Kiddos

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I met a young woman last week who was diagnosed with breast cancer a few months before I was and so we instantly started talking about our shared experiences.  Being moms, chemo, baldness, those wretched tissue expanders…  But as we chatted, she said something that left me speechless.  (And this blog would indicate that I am rarely speechless!) She hadn’t told her kids that she had breast cancer.  They range in age from preschool to upper elementary school.  I couldn’t imagine trying to keep that up– making excuses for missing out on activities because of doctors appointments and fatigue, explaining why people were bringing us dinner, hiding a port, scars, post-surgery pain…  But most of all, it exhausted me to think that she couldn’t let her kids know that she was bald.

That’s not the way we decided to handle it for our family.  Let me make it clear though, the way we handled it was definitely the best way. For OUR family. Not the best way for her family, she needed to make that decision, and there’s no way that I would judge her or try to tell her that she did it wrongly.

But it did get me to thinking.  There are probably women who struggle with how to talk to their children about their cancer diagnosis.  Or whether to talk to their children.  And when we had that conversation with the kiddos a year ago, it was a very raw time for me.  That fell into the category of things that I just couldn’t blog.

We decided to wait until we knew for sure the treatment course, I wanted to be sure that the kids got the full information when we had that conversation.  We wanted them to hear the whole story the first time. So once we knew for sure that I would have chemo and then surgery, we sat down with them.  I thought that it was important that we were honest with them and answered their answered their questions truthfully, but I know that there is such a thing as giving kids too much information.  Answer only what they ask, no more.

So when we sat them down, I reminded them that I’d had a couple of doctor’s appointments that week.  Then I told them that the doctors told me I had breast cancer.  Emma Clare gasped. Turner immediately said, “So you’re going to die, right?” Insert knife into heart. As quickly and as confidently as I could muster, I answered.  No. I explained to them that cancer is when some normal cells go out of control and don’t stop growing when they’re supposed to.  If the cancer cells get to an important part of a person’s body, that can make them die.  But my cancer was in my breast, and while they were important for feeding my babies, I didn’t need them to live. So I was going to have to take some pretty nasty medicine to kill the cancer that might make me sick and would make my hair fall out, and I would have surgery so that they could take out all the cancer in my breast.  But the doctors would do their very best to kill all the cancer and then make sure that I felt and looked as good as new when it was all over.  They didn’t love the idea of me being bald, and they really didn’t like the idea of me having to stay in the hospital overnight when I had my surgery.  But after we talked, I had several weeks before chemo started.  They had time to process, ask questions, and get used to the idea. They talked about it with us, with their teachers, with their friends. I think being able to talk about it made it less scary, little by little. By the time they went with me to have my head shaved, they were excited about it, and months later, they were even ok with the surgery, too.

I won’t say that we handled it perfectly.  I won’t say that it was easy. I cried a little.  I was honest and told them I was scared, too. (Maybe I should have been stronger?) At one point, Clay had to take over because my heart was broken, and so was my voice. But we told them that we had so much confidence in my doctors, and more than that, I was confident that God had a plan for me and for our family, and we would come through it all fine.  Believe me, just this week, I’ve had a couple of doses of reality.  Cancer isn’t pretty and pink, it isn’t easy, it doesn’t always have a happy ending, and my kids might not have the most realistic perspective of how bad it can get.  But you know what? I’m totally ok with that.  They’re just kids. They can grow up later.