Kicking Breast Cancer's Butt

Mama’s Head

Port is coming out today!

After 20 weeks of chemo, 6 weeks of radiation, and a few weeks rest break, my beloved little purple port is coming out today.

Halleluiah!

I took my first dose of Tamoxifen today.  I set my phone alarm for 12:30pm every day, because you’re supposed to take it around the same time every day.

One of the side effects my doctor talked to me about was increased chance of blood clots, so I figure if I drink one glass of red wine every night, I’m good.

Red wine is good for that, right?

That’s my story and I’m sticking to it.

I mentioned a few days ago that I had seen my medical oncologist, and that she had given me my prescription for Tamoxifen.  I also mentioned that she said I could start anytime, as long as I started before the three month follow up.  I’ve had the prescription paper sitting next to my recliner, with the thank you letter I wrote to my friend Susan, and the check for the Boy Scouts for the Christmas tree pick up they did early in January.  The two items for the mail are STILL sitting there, but tonight Ken took the prescription up to Walgreen’s to be filled.

He just returned, and let me know that the Tamoxifen would be ready later tonight, and we could pick it up tomorrow.  Now, I’m not especially worried about side effects, and from everything I’ve been reading, most patients don’t notice any SE’s right away.  But I’d decided, sort of subconsciously, that I would wait until after Valentine’s day to start the regimen.  I told Ken this, when he gave me the prescription status, adding that he didn’t expect I was in such a hurry to start that I would need it tonight.  He looked at me for a beat, and so I felt the need to explain myself, and why I wanted to wait until AFTER Valentine’s Day.

He told me “The best Valentine’s gift you could give me is to stick with the program.”

Can you believe that guy?

We met with the medical oncologist yesterday, and I received my prescription for Tamoxifen.  She said I could start any time, as long as it was before we meet again for my 3 month follow up.  Ken suggested I wait until after the Superbowl, so I don’t have to suffer with some of the more common side effects, and can enjoy the game.  But everything I’ve been reading on www.breastcancer.org indicates that most patients don’t notice any side effects right away.  Still, I think I will wait, at least until next week.

She told us that weight gain, or at least trouble losing weight is common on Tamoxifen, as it messes with your metabolism.  I also learned that chemo messes with your metabolism.  Here I thought it was all because of the steroid.  But no.  And now I’m frustrated, grumpy, and obsessed with the unknown – again.  I have no idea how my body (and mood) will react to this drug, so my mind immediately goes to the worst.  I’m going to be a fat, bitchy meanie head, with out of control emotions, my daughter will be afraid of me, and my husband will want to divorce me.  In short, I’ll become my mother.  But that’s another story…

I can’t blame everything on my medication, especially the weight gain, which seems to be primarily settled around my waist.  I gained only 14 pounds on the A/C regimen (only!), and it came off pretty fast (to be honest, I was fat to begin with).  Therefore I expected that I would drop the 27 pounds I’d gained on taxol just as quickly.  But I just keep on losing and gaining back the same 2-3 pounds, no matter what I do.  At least it seems that way.  I don’t feel that I’m doing anything different now that I was doing when I finished my A/C, except of course I’m not traveling like I was those three weeks after the A/C.  I was under a lot of stress, so I also barely ate, for fear that I’d mess up my digestive system even more than the chemo did.

Thinking about it now, after the sentencing hearing was behind us, and everything about my father’s death was resolved (at least as much as it could be, for the present – again, that’s another story), I went into comfort eating mode.  I wasn’t constantly nauseous from chemo, and life went back to (relatively) normal.  This significant lack of stress contributed to my weight gain on taxol.  I gave myself a pass to eat anything I wanted, and rest as much as I wanted.  This explains why I gained 27 pounds during my taxol regimen, rather than a measly 14, as I did on A/C.  This may also explain why I haven’t been able to peel the extra weight away now that I’m not having weekly infusions of chemo.

Now that I’m complete with all of my chemo and radiation, it’s time to start thinking about recovering not only from the treatment, but from my “free pass” from taking responsibility for my health and weight.  I’ve started to be more mindful of what I’m eating.  Not so many bagels with cream cheese, more leafy greens at lunch; however, still plenty of cream and sugar in my coffee.  Some things I just can’t give up.  Plus I’m crazy about Ken’s “mansangna” which he makes during the Seahawks games.  I’m not kidding, it’s the best lasagna I’ve ever had.  Cheesy goodness…

Since I love food, I have to believe exercise will be my saving grace to burning off the belly fat.  It always has in the past – housework, yard work, walking to the store – because I can’t stand going to the gym.  I feel like I don’t belong there.  That’s for young, vital, in shape people.  But that’s just me.

The thinnest I’ve ever been since high school, I still weighed over 140 pounds, and my face was gaunt.  And I ate chocolate every day, pasta 3-4 times a week, and drank coffee with cream and sugar twice a day.  The only exercise I got was walking – lots of it.  Probably 20-25 miles a week and that’s no exaggeration.  I was studying abroad in London, and one of my classes was Art and Architecture, which was lots and lots of walking every single week.  So no one can tell me simple walking doesn’t burn calories and fat – it does.  At least, it works for me.

I guess what I’m getting at is my exercise has to have a goal other than weight loss.  A clean house, a decent garden, or seeing beautiful places and things and meeting wonderful people around London, Paris, Charleston, etc.  My jeans fitting a little more loosely will be just a bonus.

Hmm, maybe this “bigger picture” approach is the key to my recovery from breast cancer, as well.

I have written before about my expectations for each phase of this process.  You know what I keep saying – once I get past the surgery/A&C/taxol/radiation, the next part will be easy, I say to myself.  Ha!  As we’ve all learned by now, nothing is easy compared to anything else.  Each phase is just different.  You’d think I would have learned that lesson by now.  But forgetfulness takes charge, and after I’ve completed everything, I found myself feeling like I hadn’t suffered enough to really call myself a survivor.  Yeah, I had pain after the surgery.  A LOT.  But that’s in the past and I forget about it, because I have new things to deal with.

The A/C left me nauseated; the medication to help me with the nausea left me constipated; the drugs I took to protect me from having an allergic reaction to the chemo left me agitated; and the whole mess left me exhausted.  Exhausted and bald.

After a three week break, we started the taxol.  Ah, the taxol.  How I worried about the taxol.  Everyone told me that it would be different than the A/C.  It had it’s own issues, though most patients have fewer issues with taxol than A/C, or at least the taxol issues were easier to tolerate than the A/C issues.  Other breast cancer patients I’d read about on line said differently, that it was actually WORSE for them than the A/C.  So for once I wasn’t expecting an easy ride by comparison to my experience to the A/C.  But I was terrified about losing my nails.

As I have mentioned before, one chemotherapy agent has proved to be neither easier nor harder to tolerate than the other.  Each is simply different.  I didn’t lose any MORE hair during taxol, and the hair on my head, which started to grow during my break from A/C when we traveled so much for the sentencing hearing, kept on growing.  Still no eyelashes or eyebrows, though, which makes it interesting on the rare occasions when I felt like applying makeup.

Then came radiation.  By the third week, I was back on anti-nausea medication.  Why would I be nauseas?  The radiation oncologist didn’t seem concerned about it, and offered to prescribe an anti nausea medication, which I declined, as I still had PLENTY left from the collection I’d gathered all through my A/C.  Every day like clockwork, one hour before we had to leave, I’d be nauseas.  Only ONCE did I ignore it and go without the medication.  That was the most miserable radiation session of the entire course, and I barely made it through without begging for a break.  But that would have started the process over again, and that I was sure I couldn’t get through.  I would have blown that radiation session, and it would have been tacked on to the end of my series, and I had a terror of extending my series past 2013.   Then by the third or fourth week, I was on twice daily ibuprofen for the inflammation and pain.  My skin looked like hell, and I couldn’t wear a bra.  Radiation sucks.  The aloe and prescribed radiation gel no longer helped, as it dried out my skin more than it soothed, and the calendula cream just burned.  Thankfully the nurse working with me gave me a more emollient, gentle ointment (Aquafor, I love you!), which got me through the last weekend.

Now it’s two weeks after the final session, all the grey/black ash that was the top layer of my skin has peeled away, and left a nearly normal-looking layer underneath.  It looks good, though it stings like anything.  I’m still taking the ibuprofen for inflammation, especially when I do too much.  I guess you could say that I can finally accept that radiation is really, truly behind me, though the pain and tight skin remains.  I can wear a bra now, sort of, but not all day, and if I push it past 5 hours or so, I feel like I need to take a scissors to the bra to get out of it.

When exactly does this get easier?  Yes, I’m elated that I am not being radiated every day, or being infused with chemotherapy agents once a week or so.  But seriously, recovery may be the hardest phase I’ve encountered yet.  Quite frankly, it’s a bitch.  I want to be able to do the things I could do before, like, oh, I don’t know, pick up all the laundry, get it washed, dried, folded AND put away, and NOT be completely done in the next day?  As I write this, though, I realize now how far I have come since March 29th.  It wasn’t so very long ago that just taking a shower would do me in for the afternoon.  Recovery is HARD, maybe the hardest thing I’ve ever done.  But now I can really see it – I Am Getting It Done.

It has now been more than one week since my final radiation treatment.  We’ve had New Years, packing up the Christmas gear for another year, and thinking about next steps as far as our housing arrangements for the next 3 years, and beyond.  And I have three blissed weeks off from doctors and needles and hopefully anti-nausea medication, in which to luxuriate in those less exciting topics.  I had had a return of my nausea those last three weeks of treatment, every morning about an hour before we had to leave to drive into downtown.  Hmm, I wonder why that could be….

It’s been a long haul, but we’ve finally finished 20 weeks of chemo, and 6 weeks of radiation.  Oh my g.o.s.h., who would have thunk it…I know I couldn’t imagine being here, standing in “The Hard Part’s Over” Land.  And I thank you for joining us on this larger than life, unexpected journey.  There is still a long way to go, but we have a little time to rest before we start the trek down the mountain.

About 3 weeks into the radiation process I often had the horrible thought that on the final day the doctor would say “Just kidding!  You’ve got 12 more weeks to go!”  This is similar to the worry I carried around before my final chemo infusion.  I mean how could I be done, so simply as that?  Shouldn’t I suffer a little longer?  Shouldn’t I have to work harder at this?  But as we now know, the final infusion came and went with no drama, and no fanfare.

My final radiation appointment was about the same.  It’s funny, the ten appointments leading up to the final, while I was anxiously counting the days, and trying to fit Christmas in there somewhere, giving up a lot of what I had envisioned – clean house, outside trees adorned with ornaments, my ceramic Christmas Village set up, with a new addition or two – as often as not, I found myself getting a little sad about the prospect of being “done” at least for the time being.  I’ve been at SCCA every week or two for nearly 6 months, then was there every day for another 6 weeks.  These people were like beloved coworkers to me.  We all had the same goal, taking care of my cancer so I could take care of the rest of my life.  We all know that there will come a time when I am NOT doing this.  But when I’m knee deep in it, I can only focus on the now, on getting through each treatment, which is not as bad as I thought it would be, but it’s not as easy as I thought it would be, either, if that makes sense.  In short, radiation therapy is nothing like I thought it would be.

Each hurdle I pass, I think, “Okay, this next part has be to a piece of cake compared to what I just went through.”  Don’t kid yourself, it isn’t.  It’s just different.  During radiation I may not have the mind-numbing fatigue and miserable nausea I had with the A/C regimen, and as much as I declare I’d rather have pain that the awful completely-at-sea-in-a-storm feeling I had on the pain medicine, know this: Radiation damage still sucks eggs.  It hurts, and there’s nothing you can do about it other than apply the gels and ointments, take the ibuprofen, and go back the next day asking for more.  Thinking about it now, I am VERY grateful for the good advice from the plastic surgeon last March, and didn’t get the skin sparing mastectomy surgery.  That extra skin flap would have made the situation even more hideous and painful.

But even in the face of all of that, I was going to miss seeing my therapists every day, and the lady at the front desk with her cheerful smile, and I would literally tear up at the thought of it for the 10-12 days leading up to that final day.  I love my radiation oncologist; I looked forward to the therapists stories every day; and it was a delight sharing our cooking accomplishments with one another.  But as much I loved all of that, on the final day, I couldn’t get out of there fast enough.

We are about 24 hours post final paclitaxel infusion.  Final infusion was a lot better than the week before.  Last week I left absolutely drained.  I’ve never felt that poorly afterwards, not since the dose dense A/C cycle.  Maybe the premeds didn’t have enough time to take effect, but I felt like I had always expected a cancer patient to feel.  So worn out, I was ready to cry.  I couldn’t even look at people, I just followed Ken to the elevator, to the car.  Once in the car, I was very upset.  My hands tingled so much (I think I wrote about this last week) I was frightened, sure I was having some kind of horrible reaction.  So I was worried going into this last one.  Granted, I felt kind of loopy from the Benedryl, but not so completely worn out as the last time.

Later that evening, watching Halloween Chopped with the husband and child, I was so tired I could barely keep my eyes open, and so uncomfortable, I shifted in my seat and moaned and whined for 45 minutes or so.  Ugh.  By the time Ken shut off the television at midnight (the kid was already tucked in for the night), though I was ready to go to bed, I was WAY too restless to sleep.  Ken was in his office, checking for work email and putting on his computer, so I got up and went back to the family room to read.  I’ve been obsessively reading Phillippa Gregory historical novels, so time passes more quickly than I realize, and soon it was after 3am.  Still I was not sleepy, and kept reading.  Finally, I got sleepy and went to bed after 4am.  At 6:30am or so, the kid woke me up.  And for once, I was not bitchy and “hung over” from lack of sleep.

So here I am on 2 and one half hours of sleep, and relatively speaking, I feel pretty great.  Granted I’m not super active, I have only done one load of laundry, one load of dishes, and finally folded the towels that have been sitting on the couch for the last three days.  I was in my pajamas until after 2pm, and am still wearing warm-up pants, rather than jeans, so while I’m clean (I showered), I’m still basically wearing pajamas.  I hope I can get my jeans washed and dried before we have to leave for the craft store.  I have only two pairs that fit me right now.  Did I mention that I was 40 pounds overweight before I started this process, and I’ve gained another 27 since I started the paclitaxel.  And no, I can’t blame this all on the steroid, though it isn’t helping.  Ugh.

So why do I feel so good on 2.5 hours sleep, when on 4-5 I’m usually groggy and pooped out?  Maybe it’s the fact that we’ve eaten a proper dinner the last two nights, complete with lean protein and a vegetable.  Holy crap, how’d I pull that off two days in a row?  Never mind, I won’t ask questions, I’ll just go with it…

Maybe it was the hazelnut syrup my husband brought home for me last night, and cleaning the espresso machine, so I could make my favorite Friday morning treat, a hazelnut latte (Thanks honey! XOXO).

Or maybe I’m still buzzing off that half box of Dilettante Café Creams truffles I ate last night (oof, now you know why I have gained 27 pounds!).   Maybe I’ll crash by 6pm tonight – who knows!  I’ll take a good day, and not spend too much time wondering why, and how to recreate it.  Because one thing I’ve learned, whatever my status is at any given moment – feeling good, feeling like crap, bone tired – things are bound to change, and probably soon.

Now I think about it, my eyes are starting to feel a little heavy.  Time for cup of tea, or possibly another mocha truffle…

Just back home after completing infusion number 11.  Riding down in the elevator at SCCA, for the first time in a long time, I FELT like a cancer patient.  So drained, and my hands tingling like they were shot full of the anesthesia they give you at the dentist…

And for the first time EVER, I had a moment when I wanted to call my doctor and tell her I don’t want to do the final infusion.  My hands were so numb, it scared me.  I kept thinking how I wanted to take a nap, but I was afraid to go to sleep, as I might be having an allergic reaction.  Up to this point, I’ve been taking the paclitaxel like a champ.  But the side effects are cumulative, so perhaps an allergic reaction could still happen, even though I’ve had no issues on that so far.  Driving home with Ken I was having visions of ending up in the emergency room this time, and was considering calling the oncologist to tell her “I can’t do this again.”

Thankfully, the feeling has passed, and my hands and feet feel as they normally do during this process.  Tingling and numb, but well controlled while I am taking the L-glutamine.  And in no way frightening.  Just annoying.

But I’ll let her know what happened, and how long the effects lasted, and let her do what she does best.  Because she is awesome.

So my hair is growing, which is good.

However, a couple of weeks ago I got a bee in my bonnet to wear eye makeup, and found out just how much you NEED eyelashes, just to keep the powdered shadow out of your eyes.  Most frustrating, as I had about 3-5 lashes total on each upper eyelid. Yikes!  And don’t even get me started on how difficult it is to line up false eyelashes without the marker of your real eyelashes to guide you, or on how to know where to stop with the highlighting shade, when you have no eyebrows.  Freak show potential here!

Now, fast forward to today.  My upper eyelids, and I hope I’m not jinxing myself here, have a profusion of tiny, short lashes growing out and filling space.  Whoo, hoo!  Oh my gosh, I hope my whoo, hoos are not spoken too soon…

My eyebrows are a maybe, at least on the left.  Short dark hairs seem to be growing in.  Not so much on the right.  Did I tell you I got fed up with them and shaved the rest off?

Two more infusions to go, so I may yet lose all ground I have gained here in the last couple of weeks.  Sucker…

I never considered the possibility of having to take a break from chemo.  I’ve just been head down, and plow through to the end, always counting the weeks until I can be done with first the A/C and now the paclitaxel.  But the fact of the matter is the neuropathy in my feet has been getting worse, and the nail beds in both my fingers and toes are increasingly more painful.  I had been thinking that this is all within the normal range of side effects, and so while I complain, I don’t take any other action, except to be very, very careful of my nails. But Ken’s been bugging me to call my oncologists office and let them know.  He’s losing sleep over it, having crazy dreams about it.  Lately he had been teasing me that if it was up to me I would never say anything, about any symptoms, until I showed up for a doctor’s appointment with my arm in a bag (cause it could fall off and I still wouldn’t call her) saying “Yeah, my arm fell off, but I read on the internet that this is normal.”  So I finally called her, and she asked me to come in on Thursday before my weekly infusion.  She is concerned that if we don’t address the issues, some of the effects could become permanent.  She feels that 1) we should lower the dose (it will not be any less effective if we lower it), and 2) I need a break of 1-2 weeks, which I was hesitant to do.  I just want to get this over with, you know?
But the more I talked to her, and the more I thought about how well I was doing earlier on, most likely because I had a break between the A/C dose dense cycle and this paclitaxel, I came around to see that she is right about taking a break.  Not only will it lessen my chances of having lasting effects of neuropathy, but it will make it easier for me to get through the rest of this cycle. But she was willing to let me make the decision, and for that I am grateful.  She listens attentively, and is willing to let me have the final say.  But she was right, and I just had to get to that conclusion on my own time, and in my own way.  She gave me the freedom and the trust to allow me to do that.  Have I mentioned lately how much I LOVE my medical oncologist? Because I do.  I can’t imagine going through this with any other doctor.
All this means that my last infusion will be in October instead of the end of September, as I was looking forward to, but you gotta do what you gotta do.