The more things change, the more they stay the same…

It’s been a week since the oncologist told me that I wouldn’t need chemo.  And that means that my life can largely go back to normal.  I have one more plastic surgery that will likely be in late April or early May, but I think that should be out patient surgery and not too much of a big deal, though you should feel free to shower me with  baked goods, regardless.  I’ve been on tamoxifen for about a week, and though I’ve had a headache 2 of those days, my guess is that those headaches are just related to the overall nuttiness of my everyday life, and not to the drugs.

I am incredibly relieved (still) that chemo is not part of my breast cancer experience.  I really feel like I got off easy and I keep waiting for a call that the oncologist has changed her mind.  I was diagnosed at the end of November, had my first surgery in January, will probably have my (hopefully!) final surgery in April or May, and then it will just be routine maintenance (knock on wood) from there.  6 months, beginning to “end.”  And I am thrilled for my family that we can be on the road to normal (or what passes for normal in our house) now. The kids have moved ahead almost as though nothing ever happened.  Jon’s work schedule is returning to the long hours and travel that preceded my diagnosis.  The food is still showing up at my doorstep, but only for another week or so, except for the zucchini muffins that I hope Bridget will continue to bring as long as we live here.

So it seems that the only thing that isn’t back to normal is me.  I mean, I have plenty of moments when everything is fine.  I even have moments when I almost forget about the surgery and feel totally like myself.  But the truth is, there is no way you can go through what I’ve gone through and not come out a different person.  And I think it’s too soon to know exactly what that means.

The changes are as simple as needing to go to the dentist, but vaguely remembering something in my volumes of medical paperwork about going on antibiotics before having any dental work done, and then wondering which of my many doctors I call to ask about that, and not really wanting to go through the exercise of calling any of my doctors to ask, and then not wanting to go to the dentist because I’ll have to go through the story of the last several months, which I’m just not in the mood to do.  And when I fill out medical histories now, I can’t just  mindlessly check “no” all the way down the form, which I always could before. And once you check “yes” there are all the follow-up questions.  And should I not be eating soy and soy-based products because there’s a chance that the isoflavones (whatever those are) may interfere with drugs like tamoxifen.  And now that my cancer is gone, do I have to stop drinking peppermint mochas (an indulgence I allowed myself after my diagnosis) and go back to the “healthier” cappuccino I had been drinking, or should I just give up caffeine all together, because I vaguely remember some article that discussed a link between caffeine and breast cancer?  And in the grand scheme of things, these are minor frustrations, but in the aggregate, they mean something, I think.  And then I feel bad for complaining about little stuff like this because I’m so fortunate not to have bigger things to complain about, like several months of injecting poison into my body, hair loss, and nausea.  And as an aside, do non-Jewish people feel the kind of guilt that I do for not needing chemo?  Is this just cultural guilt?  Anyone?

Anyway, I said back in November that by all accounts I should end up healthy and well, it was just a question of how hard the road would be and how long it would take.  And on the spectrum of people with breast cancer, my road so far has been short and relatively easy.  But that doesn’t mean my time on the road, however short it was, doesn’t stay with me, in ways I didn’t expect and couldn’t have imagined, and sometimes can’t even explain (see e.g., this post, which I think may be a little scattered, at best).  And I’m guessing that this seems obvious to all of you, and probably would have been obvious to me if I were on the outside looking in.

And now I’m going to go pick up Abigail from school, drop her at tennis, and then go pick up Benjamin at school, and bring him back to pick up Abigail at tennis, because it’s a normal Friday afternoon and that’s what we do, which, despite everything else I’ve said in this post, really does feel good.

Today’s News

Well, as most of you already know from Facebook, my trip to the oncologist, whom I really liked, went really well.  She went over the pathology of my tumor, noting that my cancer cells were reasonably well behaved, in that there was no evidence that they were trying to go anywhere else.  She pointed out that I was very clearly hormone receptor positive, which means that taking Tamoxifen for 5 years should be really effective at preventing recurrence.   She went over my oncotype score, pointing out that while my score was firmly in the low category, that alone wasn’t conclusive information. And then, most importantly, she said that given ALL of the information she had, she did not think that I would benefit from chemo.  I was so happy that I had been referred to such a smart cookie.  She said that if I felt strongly about mentally needing to feel like I had done EVERYTHING to try to prevent recurrence, she wouldn’t try to talk me out of chemo, but that she didn’t think it was necessary and wasn’t recommending it.  At which point I stopped listening to everything else she said.  And then I told her that because she gave me the news I wanted, I liked her very much, and would be happy to come back to see her any time (or in 3 months, as she then recommended).  As an aside, she also complimented me and Jon on our comedic timing throughout the appointment.  Did I mention how smart she was and that I really liked her?

I am of course very happy about the news that I won’t need chemo, and feel like I could now sleep for several days.  Of course the DC overachiever in me wonders whether I can still legitimately call myself a cancer warrior if I don’t have to go through chemo, but then I remind myself that I have some pretty good scars, and that I earned my title.

So now I’m going to go and watch some mindless tv.  But first, thank you so much for all of your thoughts, prayers, good wishes, funny emails, and facebook posts.  I am so appreciative of all the support I have received so far.  Hopefully you won’t ditch me now that I don’t need chemo.  Although I did receive the best possible news today, and although I feel grateful that throughout this ordeal, the news I have received thus far, other than the diagnosis itself, has largely been good, I know that I will still need the continued support of my family and friends as I move ahead.  I might be able to survive with fewer baked goods, but I think it’s still too early to tell for sure.

And I guess now I’ll have to figure out what else to write about in my blog.  I’m not sure how many posts I can get from the side effects of tamoxifen, although the mood swing and hot flash stories could be fun.

Suggestions for other blog topics are always welcome.

Night night, everyone.

xoxo

Yesterday was exactly 4 weeks since my surgery, and I marked it by making my triumphant return to the gym.  I didn’t do much; 30 minutes on the recumbent bike and 30 minutes on the treadmill.  It was good to be back, but I’m not going to lie, the feelings were mixed.  For starters, the gym I go to is pretty much filled with people who are already in really good shape.  Why do I go there then, you might ask, while singing Sesame Street’s “One of These Things is Not Like the Other.”  Well, it’s close to my house, they have a great cafe, and my friend Bridget made me.  Anyway, it’s not as though anyone would have confused me with those crazy in-shape people before my surgery, but yesterday I was really wishing I had a shirt that said, “first workout since my (double) mastectomy” so that people wouldn’t look at me and wonder why I had bothered going to the gym if I was going to go THAT slow and for such a SHORT time.  Was anyone actually looking at me and thinking that? Probably not.  Was anyone looking at me and thinking anything at all? Probably not. Was anybody even looking at me at all?  Probably not.  But I did wish I had the shirt.

It also occurred to me that, at least for now, I don’t feel comfortable changing or showering at the gym.  I hope one day that changes, but for now, I put my gym clothes on at home, and come home after to shower. While this is only a mild inconvenience, it is also another reminder of the fact that no matter how normal life is starting to seem, the more different it actually is. The good news is that because I’m biking/walking at such a turtle’s pace, I barely break a sweat, so now I can stop and do errands on my way home from the gym without offending anyone.  I’m sure my fellow shoppers at the grocery store are more than appreciative of that fact, given the number of times I decided to shower at home before my surgery and probably DID offend people in the grocery store.  So at least there’s that.

Tomorrow is a big day.  In the morning, I start physical therapy.  I didn’t do a lot of research before my surgery about the recovery.  My focus was just on making it to, and through, the actual surgery. I guess I considered the recovery, but didn’t concern myself with the details (such a great lawyer, I know).  So I had no idea how much upper body strength I would lose.  Yesterday, at the gym, I went to put my ponytail through that little hole at the back of my hat, and it’s not that it HURT, it just felt awkward, and uncomfortable.  I don’t have a good sense of when to push myself even when it feels uncomfortable, so hopefully the PT will help with that.  Do you think that the physical therapist will think it’s weird if I tell her that my goal, after undergoing a double mastectomy, is the ability to put my ponytail through the hole in my hat?  Maybe I should aim higher.

Generally, though, things are feeling better.  I still have a lot of numbness.  I can’t tell if it’s lessening, or if I’m just acclimating to the feeling.  Again, I wasn’t prepared for how weird everything would feel.  Even if I had done the research, I don’t think I could have prepared myself for this.  Physically, it’s not a feeling I can explain or describe, so I don’t think reading about it would have done me any good.  And it seems that with breast cancer everyone’s experience is different anyway.  What is most frustrating, and what I don’t think I appreciated until after the surgery, is just how slow the road to recovery is–physically, mentally, visually.  I wish I could fast forward to the time when I have put all this behind me;  when I know how I feel, how I look, what it took to get there; what clothes still fit, which ones I’ve had to replace, and how long it took me to want to try on clothes again.  For someone who loves a good shop, this part isn’t easy.  :)  It’s a good thing I love shoes, because they’re the only thing I want to try on these days.

And of course the biggest thing is my appointment with the oncologist tomorrow afternoon, at which I hope finally to learn about my treatment plan.  I do know that my oncotype score came back low…a 10 out of 100, which I guess translates to something like a 7% chance of recurrence, assuming 5 years of tamoxifen (an oral hormone suppressor).  I don’t know what that means for chemo, but for now, I am thankful that my score was so low, which is way better than the alternative.  I am trying not to read too much about the side effects of tamoxifen, since that appears to be a given.  I do think mood swings and hot flashes might be among the side effects, though, so those of you who spend a lot of time around me might want to fasten your seatbelts, given how much I hate the heat and how prone to mood swings I am even without the drug.

Finally, please think good thoughts around 3pm, EST tomorrow…and then keep thinking those thoughts for about 2 hours after that, just in case she’s running late.  You know these doctors…(just kidding, Dad).  I’ll keep you posted.

Maybe I won’t have to run in that race after all…

I apologize for taking a break from my usually witty cancer banter, but as a woman, and as a woman with breast cancer, I suppose I should say something about the whole Komen Foundation/Planned Parenthood debacle.  But what is there to say?

Mostly, I’m just really angered and profoundly saddened by yet another example of the polarization and divisiveness emanating from DC.  All I’ve seen since the news broke are arguments of Right v. Left, Republicans v. Democrats, Pro-Choice v. Pro-Life…all kinds of Us v. Them, and the vitriol in all the commentary and interviews and articles on both sides is so disheartening.

Did Komen withdraw its funding because Planned Parenthood is under government investigation, violating Komen’s new eligibility criteria, as was originally reported, or because Planned Parenthood doesn’t provide mammograms, only mammogram referrals, as Nancy Brinker asserted to the press later today? I don’t know.  The truth is, an organization such as Komen making a decision to provide funds only to those organizations that provide direct services rather than referrals, should those organizations exist, might even be sound policy to a lot of people, maybe even including me.  But anyone who follows politics knows that, especially now, Planned Parenthood isn’t just any organization.  And it’s hard for me to believe that the board of Komen made its decision to change its policy, whatever policy it was changing, without Planned Parenthood specifically in mind, and without knowing the kind of reaction it could expect.  If the decision itself wasn’t a political statement, the Komen Foundation had to know that the news about it would be.

I have lived in DC for over 15 years and worked at a Federal agency during 3 different Administrations.  And over time, I have watched the aisle between the Democrats and the Republicans grow wider, and wider, and angrier and angrier.  And politicians on both sides focus mostly on what they need to do and say in order to be re-elected, rather than on the people who are most affected by the policies they champion.  The situation with the Komen Foundation and Planned Parenthood strikes me as yet another example of this division.  And that’s really a shame.

I am so fortunate to have the access to health care that I do. I have the ability (and the insurance) to go to a great ob/gyn, who talked to me about breast cancer and referred me for my mammogram at 39.  And I had all kinds of options for where to go for my mammogram, and my insurance covered the mammogram, the follow-up ultrasound, the biopsy, and all the crazy expensive care that has followed since (at least I hope so!).  And in the interest of full disclosure, it is at least in part through a connection to someone at the Komen Foundation that I was able to get in to see the amazing and sought-after doctors who performed my surgery and are managing my care.  But I recognize that most people don’t have this access; that some women don’t even know what a mammogram is, or where to go to get one, or why they need one, let alone how they are going to pay for it.  So I’m going to focus on that.  I’m going to make a concerted effort to tune out the rhetoric, and do my research, and find the organizations that provide the breast and other health care and health education that all women, regardless of income, need and deserver, and put my support there… wherever that may be, and whatever other services they may or may not provide.

And that’s all I have to say about that.  At least for now.

What a difference a day (or a week, or a decade) makes…

Yesterday, I had my first real post-op meltdown.  I blame much of it on the fact that the other 3 members of my family all had strep this week.  My husband was the only one who actually showed any signs of being sick, but once he tested positive for strep on Tuesday, I knew I had to test the kids, despite their lack of symptoms.  So in the morning, I took Benjamin to the pediatrician’s office.  And while in the parking lot the oncologist’s office called and moved my appointment from 2/2 to 2/9, because they probably won’t have my Oncotype results by 2/2, which made me surly.  And then Benjamin tested positive for strep. So I took him to CVS (AKA, consistently very slow) and waited for his antibiotics.  Then I brought him home, and tried to get him to watch Cars 2 in bed so that I could get a little rest.  But instead he enthusiastically narrated the movie, jumped around the bed and the room, and then randomly fell asleep in a chair, about 30 minutes before we had to leave to pick up his sister.

So I had to wake him up so that we could go pick up his sister, Abigail, and take her for her strep test.  And I think most of you know how well 4-year olds react to being woken up before they are ready. Why couldn’t she have gone with him in the morning, you wonder?  Because she “could NOT miss math.”  It was the first day of a new unit on polygons, or geometry, and “that’s her favorite.”  No kid of mine, I tell you.  But since she had no symptoms, I indulged her, and decided that I would take her after school.  And so back to the pediatrician’s office we went at 4pm.  And of course she tested positive.  So back to CVS we went.  And we stood in line and stood in line and stood in line.  And then they didn’t have the prescription in their computer yet.  And it was after 5pm, so I couldn’t just call the doctor’s office back, because they were closed.  So we waited.  And I tried to keep the kids close to me, because they were contagious.  Only they were CRAZED.  And because I just had surgery 2 weeks ago, and still had drains, I couldn’t just grab them and hold them down, like I normally would.  And then I heard the pharmacist say, “let’s hurry this one up; she has sick kids.”  And I thought that people around me probably thought I was picking up some sort of hyperactivity meds, because clearly THESE balls of fire could not actually be sick.  We finally went home, and I fed them a quick dinner, and put them to bed.  And then Jon came home, and I had my meltdown.  Because I’m tired, and my kids aren’t.  Because I can’t just change into pajamas while my kids watch tv on my bed anymore, because it might traumatize them. Because a significant chunk of my body is numb and uncomfortable and looks like it was designed by Dr. Frankenstein.

And then I cried because I learned that one of my favorite dogs in the world, Timber, who was, as far as anyone knew, fine on Tuesday, was at the emergency vet and not doing well and late last night, had to be put to sleep.  And it came out of nowhere and couldn’t come at a worse time for her owner, my very good friend, Jenn.  And it made me mad.

And then it was today.  And I spilled an entire bottle of Abigail’s bright pink (for breast cancer awareness, of course) amoxicillin all over the refrigerator.  But I cleaned it up and went to the doctor’s office where they FINALLY REMOVED MY DRAINS.  And it isn’t perfect.  I’m still uncomfortable and things still feel weird, but it was SO MUCH BETTER.  And I went back to the CVS (3rd time is the charm) and there was NO LINE and the same pharmacist from the day before mixed a new bottle of amoxicillin for me and laughed when I swore not to spill this one.  And I went home and I changed out of one of the many oversized button down shirts that I have had to wear to cover my drains the past 2 weeks and I put on a tank top and a relatively fitted pullover fleece and I actually felt and looked a little bit like myself, at least to the outside world.  And I breathed a huge sigh of relief.  Because I realized that for right now, that’s enough.  Well, except for the part about Timber.  I’m still pretty angry about that.

And then it occurred to me what a difference a year makes.  Because one year ago this weekend, Jon and I spent the weekend in NYC to celebrate my 40th birthday.  And we stayed at a beautiful hotel and ate wonderful meals and picked out a beautiful birthday present together. And the biggest concern on my radar screen was the simple idea of turning 40.  And I decided that 40 was nothing but a number and that I was as immature as ever and no number could make me feel otherwise.

And what a difference a decade (plus a year) makes.  Because 11 years ago tonight, Jon proposed to me, on the eve of my 30th birthday, because he thought it was important to me that I be able to say that I was engaged before I turned 30 (by about 3 hours). Why he thought THAT was important, I can’t say, of course.  And the biggest concern on my radar screen was something I don’t even remember, because it was nothing very big, and definitely wasn’t anything having to do with being engaged before I turned 30.

And so for today, I’ll just be happy that I can wear a tank top and a fitted fleece, and try not to worry that my (at least for now) smaller-than-before chest makes my stomach look like it’s sticking out more than it used to…which I guess could also be attributed to all the amazing baked goods and other food the wonderful people in my life have been providing for me and my family (but mostly me) as I recover. And tomorrow I’ll try to embrace my 41st birthday with positive thoughts of the year to come.  And I will think about Timber, whose boundless energy, love for life, and ability to consume endless plates of baked goods are an inspiration.

Game Day

I came here and started writing a completely different post…and then had a small panic attack about what I was writing.  It was going to be about finally feeling “free,” on a number of fronts.  Those of you who are sports fans might understand why I couldn’t write the post. When any of my favorite sports teams play in a big game (GO PATS!), there are certain things I can and cannot do on game day…certain hats I won’t wear, certain bets I won’t make, certain parts of the game I might refuse to watch, certain status updates I won’t post on Facebook until the game is really over (most of the time, I’m only human, after all), as though things that I do or say could control the outcome of the game (they can, I just know it!).  Somewhere in my brain, I guess I understand that nothing I do or say could possibly affect the outcome, but I guarantee you this–you won’t see me in any Pats gear this weekend, and it’s in large part because of me that the Bruins won the Stanley Cup.

Most of my rituals on game day involve outwardly pretending that I don’t care about the outcome of the game, and trying not to say or do anything that could be considered “cocky” and jinx my team.  And so today, all I can say is that I don’t care at all that my pathology came back and all the nodes tested are confirmed negative for cancer.  I don’t care that it’s Stage 1, or that they found another 4mm nodule that was too small to show up on my MRI yet, vindicating my decision to do bilateral mastectomy instead of the recommended lumpectomy.  And I definitely don’t care at all, and would never say out loud, that I am, at least for today, cancer free. BIG DEAL.

And I will tell you that I went to both doctors’ offices today and had 2 of 4 drains and my lidocaine ball removed (yay!) and am much more comfortable than I was yesterday.  And I’ll tell you that I’m feeling a little bit better every day and regaining my physical strength. And I’ll tell you that when I came home from the doctors’ appointments, it was an impossibly tough call whether to eat first, or take my first real shower in 9 days, but I won’t tell you which way that call went.  And if my brother would just go on his work trip to Israel instead of staying here to help out if we need him, which coincidentally also gives him the opportunity to watch the AFC Championship game, then the Patriots might just have a chance.  But I doubt it.  And I don’t really care anyway, right?

Surgery Update

Fly-by post for those of you who don’t know me on Facebook and haven’t seen any updates about my surgery. The surgery went well and I’m back at home already. I think this is largely because the hospital was full and they didn’t have a bed for me on the floor, but they couldn’t release me if I weren’t doing reasonably well, so here I am. I’m at home, next to my 8-year old watching a ridiculous show on the Disney Channel, listening to my 4-year old playing a very loud game of Hungry Hippos downstairs. And this all sounds so much better than the sounds I heard from the woman in the bed next to me in the post-anesthesia unit last night.

Initial node reports were negative, which I think is about 90% accurate, so that is good news for now.

Thanks for all the messages yesterday. They were wonderful to read once I was lucid this morning.

xoxo,
Lisa