Kicking Breast Cancer's Butt

chemo

Grieving what was

I’m grieving today.  Grieving for the young woman I once was.  I didn’t appreciate what I had at the time.  I guess everyone wants what they don’t have, somehow believing it better than what they do have.  I regretted my large pores, my broad forehead, my prominent chin.

Like most women, I tried in vain to shrink my pores.

For a long time, I wore my hair long, and kept it pulled back from my face, even as I looked at my reflection in disgust, considering my giant forehead.

And I actually considered plastic surgery to “dock” my out-there chin.

Fool.  Looking back at photos of myself at 25, all that I see is how beautiful I looked.  All twenty-somethings are beautiful.  They can’t help it.  You’re young, your skin is taut, and dark circles under your eyes just make you more fascinating.  It means you have an interesting life, outside of your work life.  You roll out of bed, messy hair and rumpled clothes, and last night’s makeup.  You look gorgeous.  You don’t believe me now, but when you’re 40, look back at pictures of yourself at this age, and you’ll see I was right.

I look back at the image the 25-year-old that I was, and I grieve for what has been lost.  The youthful outlook, the anything-could-happen-so-everything-wonderful-is-yet-possible mind set.

I’m no longer that young woman, with the quick, light step.  I still believe anything is possible, and I will always believe in hope.  But I have to hold onto that based on faith – I don’t have the energy I once had, and I sure don’t have the physical resilience I once had.  And now I accept the fact that I am mortal.  I don’t think I fully believed in death and mortality when I was in my 20’s.  It seemed so far away, as to seem like only a story.  Yes, that happens to some people.  But not to me.

But today, I am disabled.  At least for the foreseeable future.  That is a hard truth to come up against.  I am not what I once was.  And I never will be.

I am strong.  I am powerful.  But I now walk with a shuffle and a little bit of a limp.  I walk like an old woman.

In my mind, I see the image of who I was 25 years ago, and I see a young woman skipping down the escalator at Westlake Mall.  I remember a young man, a stranger, approaching that woman, and asking her to have lunch with him, because he is so drawn to her.

Then I look in the mirror, and grieve.

I sit at my computer, and my hands begin to tingle as I type this.  Shortly they will feel numb, and I will have to stop.

I get up from the computer to walk into the living room to rest my hands.  I shuffle along, because my hips are stiff, and my legs ache.  Where is that girl with the light step, now, I wonder?

I sit down for a while, putting my feet up, to take the pressure off my knees and my hips.  I can’t knit, because that hurts, too.

I try to relax, and I have stabbing pains in my heel, I assume from neuropathy.

I am disabled.  But I am glad to be alive.

Tomorrow is my third appointment with the micro-vascular surgeon who will perform my reconstruction surgery.  Right after we met with the medical team to talk about my plan for dealing with my Stage IIIa breast cancer, I looked forward to this final stage of the plan.  After the tumor was out, and I had made it through 20 weeks of chemotherapy, and 6 weeks of radiation, reconstruction with a bonus tummy tuck (I’m having a DIEP flap recon, which takes tissue from your belly to build a new boob) sounded like the wonderful prize for getting through a long and difficult journey.  The hard part behind me, a new boob and a flatter stomach – sign me up!

However, right after my mastectomy, I seriously considered not going through with it.  Actually, for several months after my mastectomy, I considered not having the reconstruction.  The mastectomy took only 2-3 hours all told, while the reconstruction will take 8-10 hours.  I had initially thought that the mastectomy surgery would be the hardest thing I had to go through – I had to survive the anesthesia, after all.  That’s what I was truly afraid of.  I thought once I woke up in recovery, the hard part would be behind me.  I wasn’t truly worried about the chemotherapy or radiation, or the recovery.  I honestly believed that recovery from removing my breast would be as simple as taking some Tylenol.  Dummy.

It turns out that removing my 11.5 centimeter tumor was the easiest part of this whole thing, for me.  They gave me the happy juice before I went down to the OR, and probably 15 seconds after I got in there I was off to La-La Land.  Waking up in recovery was completely different than I had envisioned.  It was traumatic.  I felt all over sick, in pain, and disoriented.  I couldn’t really communicate, I just laid there and whimpered.  I’m not sure my conscious brain was fully aware of what was happening – in that moment my primitive lizard brain took over, and it only knew that things did not feel normal, and that we did not like it.  Looking back on the experience, the conscious brain knows now that what I experienced was normal for me.  But in that moment, and for months of nausea and muscle spasms afterward, it was only trauma, and not something I wanted to experience ever again.

I experienced that fear before I even met with the medical oncologist to go over the plan for chemotherapy.  Since that time, I’ve been through a few other things that once frightened me.  I had completed an endometrial biopsy as part of my diagnostics before the surgery, which came back benign.  Right before I was set to start chemo, I argued with my first medical oncologist for three days when she insisted I repeat that extremely painful procedure, and could give me no good reason why I should, and then became insulting when I asked to speak to the gynecologic oncologist who had done the biopsy.   I changed medical oncologists, and I have completed 20 weeks of chemotherapy.

I have testified at a murder trial, and seen the verdict and sentencing of the guilty party.  I watched the whole nightmare of my father’s murder age my extremely vital and resilient grandmother, until she finally decided it was time to go, having seen the guilty party duly sentenced, if not appropriately punished.  I don’t know if there is an appropriate punishment for the evil that was done to my father – at least not on this earth.

I have also completed 6 weeks of radiation, and I have had my chemotherapy port removed.

With all this behind me, I am now able to look forward to what the micro-vascular surgeon has to say, and I can honestly say the fear I experienced last spring is not with me today.  Whether that comes from the fact that the memory of that experience has faded, or if because I know I have faced worse and survived, I really couldn’t say.  I am not sure that I care.  The fact remains that reconstruction is neither the prize at the end of the journey, nor a terror I must survive in order to get back to normal.  It is simply one more fact of my life.

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!

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…

Feet feel a LOT better today.  Nail beds of the fingers still a little touchy, makes it not fun to type this.

Toe nail beds feeling better.  Still don’t want to clean my house, though. :P

 

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.

For those of you keeping track, today was my infusion #7 of Paclitaxel, out of 12 total.

Chemo infusion #11 overall, of a total of 16 prescribed, if you count the dose-dense A/C, which Ken does count.

Looking at it from Ken’s perspective, in truth we are beginning our decent off the top of THIS mountain.

This plus the additional good news of my friend Anne, who got a clean bill of health from her surgeon, and NO metastases, means that today has been a GREAT day.  Halleluiah!

 

So, so last night. Thursday was taxol infusion #6. Nurse calls it “the top of the mountain” and in a way it is, so, yay! Though I must recognize that each infusion only intensifies the effects. Even as we celebrate being halfway through taxol, in reality things could become more difficult the closer we get to the end. The possibilities include more fatigue, more neuropathy, more nail pain.  But we gotta keep on truckin’.