I’ve been back at MD Anderson recently for tests and appointments with doctors.  It’s strange to be back there.  It feels like chemo was a long time ago and, in many ways, I’ve already put it behind me.  I’d been feeling really good and had even started running again (before the flood – more about that later).  But I’m not finished with this journey.  I’ll be having an oophorectomy and a hysterectomy on December 1 to address my very elevated risk for ovarian (and possibly uterine) cancer due to the BRCA1 gene. Thereafter, for five years, I’ll take the drug Arimidex, an aromatase inhibitor (AI) that decreases estrogen levels in the body, to reduce the risk of a recurrence. (Since my tumor was estrogen receptor positive (ER+), estrogen feeds its growth; thus, lowering estrogen levels in my body lowers the ability of any (potentially) remaining cancer cells to grow and spread.)

When I was diagnosed with triple negative breast cancer 20 years ago, I was told it was a very aggressive type; so even though it was early Stage 1, chemotherapy was recommended to ensure killing cells in any area where it may have spread, however unlikely that was.  And it worked.  I did not have a recurrence of that cancer; I developed an entirely new kind.  So why wouldn’t a bilateral mastectomy with strong chemotherapy not be enough to tackle this “less aggressive” Stage 1 cancer?  Is a five-year regimen of an aromatase inhibitor (with all of its accompanying side effects) really necessary?

According to my oncologist, my current type of cancer acts very differently from the previous one, from a biological standpoint.  The triple negative cancer was very responsive to chemotherapy, so while it would have grown rapidly if untreated, chemotherapy easily rid my body of it.  The ER+ cancer I had this time, however, is less consistent in its response to treatment.  Chemotherapy may (potentially) have helped, killing off some (potentially) remaining cells, but maybe not all of them.  In the event there are (potentially) some cells remaining, the AI will (potentially) prevent their ability to grow.

Potentially.  That’s the key word with all of this.  As I’ve been reminded, it’s called “practicing medicine” for a reason – there are rarely certainties.  So how do I deal with these recommendations for treatment that may or may not help, that may or may not even be necessary? Well, it ends up being a pretty simple answer.  I think about the odds of surviving a recurrence – most women don’t live more than 2 years after a recurrence – and I realize that I need to do everything possible to ensure that I’m around for a lot longer.  It’s hard not having any control over any of this.  It seems like I have choices – do the surgery or not, take the medication or not – but is it really a choice if the result of declining is a possible death sentence?

When my doctor recommended chemotherapy, I balked a bit.  I had hoped to avoid that unpleasant experience this time around.  But when others heard it was “only” twelve weeks, they seemed to think this would be over and done with in a matter of months.  I knew otherwise.  After chemo would be reconstruction, after reconstruction would be a hysterectomy, and after the hysterectomy would be the medication … for five years.  A medication that causes a loss of bone density, joint and bone pain, possible heart issues, fatigue, hair loss. When I questioned my doctor about the side effects, she said, “You’ll probably feel like you’re 80 years old when you wake up in the morning, but it’ll get better during the day.” Oh, okay. Because it’s no big deal to feel like you’re 80 years old when you’re only 48.

Yeah, this isn’t over.  It won’t be over after the surgery in a few weeks.  It won’t be over after the five years of medication. I’ll never know if any of this was necessary and, God forbid, if the cancer comes back, if any of this did any good.  But it could.  Potentially.

Wednesday’s surgery went off without a hitch.  I’m feeling good with very little soreness. I have a drain on one side and hope to have it removed at my follow-up appointment on July 13.  I’m glad to have the surgery behind me and to take one more step toward a return to normal life. 🙂

Tomorrow I go under the knife again for my reconstruction surgery.  For the past six months, I’ve had tissue expanders under my skin preparing a space for silicone implants.  It’s hard to describe what the expanders feel like, mostly as if large round rocks have been embedded under my skin, heavy, fixed and rigid.  I’m constantly aware of them and their firm inflexibility.  I hug people from the side because I can’t imagine what it must feel like to them to have these boulders (pun intended) pressed against them.  I’m really ready to get them out!

I admit that it’s a bit awkward to talk about this surgery.  Implants seem to be considered by many people to be the result of vanity or insecurity, regardless of the reason for them.  About a month ago I saw an episode of What Not to Wear, a show in which someone is selected for a wardrobe makeover.  The woman in this episode had been treated for breast cancer and chose not to have reconstruction after her double mastectomy.  She was a mother with young children and said she wanted to be a model for them to focus on inner beauty instead of outer appearances.  However, as a result, she had difficulty finding clothes that fit well, given that women’s apparel makers presume the natural shape of a woman’s body includes breasts.

While every woman has the right to and should make her own decision about reconstruction, I felt that this woman’s choice meant she was continually reminded of her cancer experience instead of being able to move on from it.  This is just my opinion, but what I saw was someone whose life was still consumed by the effects of her cancer treatment.  I’m proud of my battle scars but I don’t want to be controlled by them.  I don’t want the focus of my life to be about my cancer experience or the physical disfigurement caused by it.  In a way, it’s just a health issue I’ve had to deal with – like my broken arm in 4th grade or knee surgery in my 30s.  Yes, our experiences shape us and change us, and negative experiences probably more so.  But I feel no need to repeatedly revisit them.  Besides, it’s not like implants will return me physically to what I was before.  I will be left with large scars across the middle of each breast, and, at least unless or until I get them tattooed on, no nipples. (I wrote and erased that part a couple of times.  It feels too personal to share, one more indignity of the experience that I’m not sure I’m comfortable discussing, but in the interest of being honest and open about all of this, I’ve decided to leave it in.)

While I was in chemo, I watched several movies that dealt with cancer, to see how true the portrayal was (or, mostly, wasn’t).  Wit, starring Emma Thompson, was the best at giving the viewer a glimpse of the loss of dignity one experiences with the hordes of doctors repeatedly viewing, touching, examining and discussing your body.  It requires a healthy does of denial and maybe even detachment to get through it without tremendous embarrassment or downright humiliation.  So I choose to look at all of these experiences as merely medical.  If I had a tumor on my arm, surely there wouldn’t be the same level of embarrassment.  And if I chose to have surgery to improve the scar on my arm left by cancer treatment, no one would likely bat an eye.  But for some reason, a woman’s breasts are another story.  I guess with this post today, I’m trying to change that.  I’ll admit, it’s much easier to do so by posting it in a blog than it is to say it all out loud.  But it’s a start.

I’ve seen a t-shirt that addresses this issue in a great way.  It says, “Yes, they’re fake. My real ones tried to kill me!” I guess I’d need the version that added, “Twice!”

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I searched through all sorts of inspirational quotes about strength, overcoming challenges and growth in difficult times to include in this post.  But what really sums it up for me now is simply this:

“IT’S OVER!”

I was almost giddy on Monday as I waited for my last chemo treatment.  In deep contrast to my last entry, my spirits were high and my excitement was palpable.  Something had shifted inside me.  I could feel, physically feel, the changes coming.  My body and my mind were in sync; I was returning to who I was before all this began.

After my treatment, I joined the ranks of thousands of others who have spent time at MD Anderson and concluded it with a ring of the “I’m finished with treatment” bell.  The plaque above it was in honor of a previous breast cancer patient and included, in part, these words:

“She has conquered cancer. May she, and all others after her, ring this bell in victory. Through her continued fight, determination and perseverance, she has, and continues to, inspire.”

Amen, Sister!  I fought, I persevered and ultimately I achieved victory.  I have been told I inspired as well.  I am touched and honored to hear so.  But I did it all with the help and support of an amazing number of kind and generous people whom I will be thanking for a long time to come.

So what now? I feel as though this is where I am supposed to talk about the life-changing epiphanies I had as a result of this experience.  What I learned about myself, life, and the value of each day.  About taking risk and letting go of regret.  About the importance of doing the important things now.  About how there are no guarantees for health, happiness or even tomorrow.

But here’s the thing I discovered.  During chemo, you spend your time trying to get through each day, waiting to get to the end, and there isn’t a lot of room for philosophizing.  Sure, there’s time.  Lots of time lying in bed.  But thinking deep thoughts requires energy and that is something in very short supply during chemotherapy.

So how do you get to embodying the idea of “Life is short. Live each day fully” after this?  I think you have to consciously choose it and then consciously choose it again every day from then on.  It requires action, and a repeated commitment to action.  Like most deep changes, it doesn’t just happen.  It would be easy to slide back into the same as before and forget the reason for this unpleasantness.  And doing so wouldn’t be such a bad thing – certainly better than continuously bemoaning the experience or holding on to a sense of outrage over having been given such a burden in the first place.  But really growing and changing from this kind of experience requires effort.  And putting forth effort is always a choice.

So, will I choose to make changes in how I live my daily life? All I can say is, I will try. Maybe some days I’ll make the effort and some days I won’t.  Maybe sometimes I’ll get wrapped up in silly things like what I look like or what people think of me and maybe other times I’ll live only for what’s right for me, making choices based solely on my own ideas about happiness. Maybe I’ll be a complete jerk one day and the next express compassion for all of humankind.  Maybe I’ll travel and go skydiving and maybe I’ll spend a weekend in my pajamas eating ice cream and watching Netflix.   All I know is that mostly I’ll just go on being me – with all my faults and flaws, strengths and abilities – and hope that I remember to mark time, create joy and appreciate life as often as possible.  Same as before.

While my absence from this blog may raise concerns that I’ve been feeling awful again, I’m happy to say that the past two weeks have been better than expected.  At least physically.  Yes, I’m tired and weak, the bones in my back sometimes ache, I still have nausea daily and food doesn’t taste like it should, but I haven’t been vomiting, running a fever or being admitted to the hospital, so that’s definitely a win! 🙂

Oddly, I’ve been a bit low mentally, which is surprising given how close I am to the end.  I’ve been moody and emotional, crying easily at songs on the radio or commercials with puppies.  I suppose that this, too, may be some sort of side effect – either of the chemo drugs or the menopause they are sending me into (slightly) prematurely.   Yay.

At any rate, I’ve been silent because I’ve just had to put my head down and get through each day, hoping to look up and see that I’ve finally reached the end.  A friend fittingly compared it to pregnancy – even though you’re excited about the coming attraction, those last two weeks are rather miserable.  You’re just kind of over it.  So I guess that’s where I am.  I’m over feeling various degrees of ill every day.  I’m over trying to find something to eat to quell the nausea only to find that nothing really does.  I’m over the side effects that come, wreak havoc and then leave just in time for a new one to show up. I’m over looking in the mirror at my hairless head, barely-there eyebrows and missing eyelashes and figuring out a way to make them reappear so I can leave the house without drawing unwanted attention.  I’m over putting things off and missing out on things because I just don’t know how I’m going to feel that day.  And, mostly, I’m tired of being tired.

I told a friend recently that I was thinking of making a top-ten list of my side effects, trying to bring some humor to the situation.  And I’d still like to, but I’m just not there right now.  I’ll get back there, I know, and some of it is rather funny, but I don’t have the energy to be funny right now.  And that pisses me off.  Which makes me more tired.

I really want this to be the last post in which I complain about all of this.  I hadn’t wanted any of the posts to be like that, but cancer treatment can be a real pain in the @$$ and there’s just no way around it, I suppose. So, here’s hoping this is it for the negativity.  Here’s hoping the next week goes by quickly.  Here’s hoping that I’ll be able to look back on all of this and see the good again.  Here’s hoping.

 

I got some good news this weekend.  My next round of chemo would be my last!

My doctor told me last week that I would need to give myself Neupogen shots to keep up my white blood cell counts and avoid any infections after my next round of chemo.  My insurance company required the shots come from a mail-order pharmacy, and yet they had not yet been approved by last Friday and everything was closed on the weekend.  Thus, it was highly unlikely that the shots would be delivered by Tuesday (5/9/17).  In fact, according to the on-line pharmacy, it could take up to a week or two for me to get them.  My oncologist didn’t want to postpone my treatment, so she suggested we proceed with the Taxol/carboplatin as scheduled for Monday and then she would give me a Neulasta shot in her office on Wednesday.  Because Neulasta is a longer-lasting drug, it would prevent me from being able to receive my last two Taxol treatments.  Thus, Monday would be my last round of chemo!

So now the bad news.  Chemo proceeded as planned on Monday, but when I contacted my doctor about coming in for the shot, there was some confusion. As it turns out, the shots had been approved on Monday but the on-line pharmacy messed things up and failed to send them.  After multiple calls back and forth today with my doctor’s office, the pharmacist and the on-line pharmacy, we decided upon Plan B (or C?): I would receive one shot in the doctor’s office today (not the long-lasting one) and the other will be delivered to my house tomorrow for me to administer to myself.  This puts me back on my regular schedule, with two remaining Taxol treatments on the next two Mondays. Parole granted!  No, parole revoked!  Bummer.

So now I prepare to deal with the side effects of the carboplatin for this round.  What will they be? How long will they last? How badly will I feel?  Oh, the anticipation. The normal queasiness began yesterday but one new side effect is a soapy, chalky taste in my mouth.  I keep trying to find a food or something to drink that will get rid of it, but, in fact, pretty much everything tastes awful.  What a sad day when even candy, ice cream and chocolate have an unpleasant taste.  I guess that’s more bad news!

P.S. I’m feeling a little brain fog and can’t seem to explain things well, so my apologies if this entry is a bit convoluted.

 

 

I’m going to try not to dwell on the awfulness of last week, but yes, I had a(nother) rather awful week, so I’ll just put down the highlights.

At the end of my recovery from the week I spent in bed, I began to develop some new side effects.  My tongue became very sensitive, my throat was sore and my lips began to swell.  None of these were sudden, like an allergic reaction, but built gradually over the weekend.  While I found it odd that lips looking like Angelina Jolie’s were a side effect of chemo (who knew), I was generally feeling well and received my 8th round of chemo (Taxol only) last Monday.  Just before my chemo infusion, I noticed a rash developing on my chest.  It was also on my torso, but it didn’t itch, so I just chalked it up to another “little indignity” of treatment.  The infusion went fine and I was home around 9:00 p.m.

Around 5:30 the following evening, I began to get chills and feel a fever coming on.  My first temperature reading was 100.5 – Argh.  Within about 20 minutes, it had risen to 101.3 so it was back to the emergency room.

Long story short, I was admitted to the hospital Tuesday night and stayed until Friday.  The infectious disease doctors were concerned about a possible infection around the tissue expander (again), so they pumped me up with major IV antibiotics.  I also tested positive for the flu, which probably explains my miserable week before.  And the rash appeared to be in response to one of the antibiotics I had been on before entering the hospital. I also experienced several bouts of vomiting. But for me, the worst problem was that my lips were no longer just swollen.  It felt as though they had been sliced by razor blades. They hurt to be touched, even to drink from a cup or use a straw.  If I managed to  bypass my lips and drop some food into my mouth, my tender tongue made eating anything harder than oatmeal impossible.   I hate to be graphic, but I had to literally rip my lips apart upon waking in the morning, tearing skin from each lip in the process.  But if that’s not graphic enough for you, Google ‘severe mucositis images’ and prepare to lose your lunch.

After some debate between my oncology doctors and the infectious disease team, I was allowed to go home on Friday with a sack full of pills and liquids.  I had to make a chart to keep track of my medications – the ones taken twice a day, the ones four times a day, the ones for eight days, the ones for 21 days … Again, I think of people for whom medication is a daily hassle and am thankful I have not experienced this outside of cancer treatment.

Fortunately, my recovery since I’ve been home has been swifter, though not swift enough.  I had to miss an important event for one of my closest friends on Saturday when my lips were still in the Frankenstein-Licks-Barbed-Wire phase.  Those are the things I did not want this treatment to take away from me and I’m still heartbroken about it.  But my lips have healed about 75%, my mouth feels better, my appetite is good and my energy is returning.

The other good news is that I’m off the hook for Taxol this week (thanks, primarily, to another rash that developed yesterday).  The plan is to hit me with my last Taxol/Carbo combo next Monday, give me some shots to keep my blood counts up, and then knock out the last two Taxol treatments on schedule and be done.  So I have this week off, and then (hopefully) three weeks to the finish line!

While in the hospital, I whittled away some of the time watching home renovation and home buying shows.  One series helps people find affordable homes near the beach.  At the end of each episode, the new owners are shown on their deck or balcony, sipping a drink and enjoying the views.  I thought, “That’s all I want right now – to be able to sit outside with a glass of wine.”  I don’t even need the beach views or colorful sunsets.  So that’s the image I’m keeping in my mind – raising a glass to celebrate the end of this (fill in the blank) journey!

I forgot to include an update last time about my current schedule for chemotherapy.  My last round of chemo, the one that took me down, was the Wednesday before last.  Not surprisingly, when I returned for the next round the following Wednesday, feeling (and looking!) awful, I was rejected due to low neutrophil counts again.  To give my body a bit of a break, I was rescheduled for today at 5:00 p.m.

While the rescheduling and break are appreciated, the timing of the new appointment is not.  Last treatment, I was scheduled for 4:30 p.m. I didn’t get called back until 6:30 p.m. Then the nurse forgot to start one of my drips and didn’t realize it until it was supposed to be finished 30 minutes later. I finally returned home at 9:45 p.m.  Hopefully, tonight will go more smoothly.  I’ve got some Netflix shows to catch up on anyway.

That being said, if for some reason I don’t receive chemotherapy today, I imagine I’ll be moved to Wednesday again.  If I do receive treatment today, I’ll be back on the Monday schedule, unless my blood cell counts drop again.  So, it’s a wait and see situation… all depending on the numbers.

Whew.  Before I discuss the events of this past week, I just have to say how grateful I am to feel well enough to write this.

I spent the majority of the past week in bed, mostly just waiting for the sickness to pass.  I felt weak and tired and nauseous.  I also had severe congestion, a cough and trouble sleeping.  I remember the feeling from twenty years ago – it was always hard to describe.  It’s kind of like having the flu or mono except that you don’t feel well enough to do anything but lie there, thinking about how you’re sick and tired of feeling sick and tired.  Reading, even watching t.v., takes too much energy.  So you try to sleep the time away.

Lying there, I drifted through many thoughts and emotions.  I was disappointed. I was frustrated.  And I was even sad.  Maybe my memory of the first time down this road twenty years ago failed me.  Maybe I was overly optimistic.  Maybe I was naive.  But I truly believed, rightly or wrongly, that I was going to be able to do this thing without much trouble.  I was strong, healthy, positive.  I’d done it before.  I knew what to expect.  It was only twelve weeks.  Easy peasy.  Bring it on.

And then it took me down.  I couldn’t fight back.  I couldn’t get out of bed.  I could barely eat.  I got tired walking up the stairs.  I just had to lie there, defeated.

Last week, before I became confined to my bed, one of my health care providers referred to me as stoic.  That’s what I wanted to be.  I wanted to go through this saying, “Yeah, it’s unpleasant, but I’m fine.”  I didn’t want to complain about the “little indignities” associated with treatment.  It is what it is, and you just take it and keep going.  I have reasons for wanting to handle it this way.

I believe, and science shows, that a positive attitude is the best defense against illness.  Those who wither and crumble in the initial doctor’s visit, at the diagnosis, with the first unpleasant side effect are already halfway down.  This IS unpleasant; this DOES suck.  But you can’t let it take you down or you’ll stay there, or worse, slide farther down.

Also, I don’t want to be the person whose only conversations center around aches and pains and the unpleasantness of it all, appearing to seek pity and sympathy.  I was so surprised and humbled by the way my friends rallied around me from the beginning, offering so much help in so many ways.  I felt uncomfortable with the attention and the gifts.  A friend said, “Well, now you know why some people fake cancer, if you’re the kind of person who likes that.” I find it difficult to be the recipient of such thoughtfulness.  I can’t seem to separate talking about the negative aspects of this journey from the scent of attention-seeking and self-importance.  And yet, I’m trying to be honest.

And that’s why I was sad.  I felt like I’d failed.  It got the better of me and I didn’t even have the energy to get angry and fight back.  I had to admit to everyone that I wasn’t able to handle this stoically.  Now, feeling better and perhaps thinking more clearly, I know that it was bound to happen.  I’m literally poisoning my body.  How do you get through that without feeling sick and tired? (This reminds me of an old Bill Cosby joke:  “‘And tired’ always followed sick. Worst beating I ever got in my life, my mother said, “I am just sick…” And I said, “And tired.” I don’t remember anything after that.”)

I’ve been surprised by the power of these drugs.  Last time around, I had six rounds (18 weeks) of Adriamycin, nicknamed ‘The Red Devil’ for it’s hue and hellishness.  Surely four rounds would be easier, especially without The Red Devil in the mix.  But these two drugs, mostly the carboplatin, have brought more side effects and unpleasantness than the prior drugs.  Yes, I’m twenty years older.  But I was in good health.   No heart problems, no diabetes, no kidney, liver, thyroid, stomach or lung issues.  No asthma, no allergies, no weight problems, no high blood pressure.  Time after time, as I went through my health history with my providers, they would say, “Wow, you’re really healthy.” (To which I would reply, “Yep, except for this cancer thing!”)  As I sit in the waiting rooms at MD Anderson, I look at the older patients and think about what a struggle it must be for them.  Add this toxin to their other health issues and it’s a wonder they’re walking around at all.

I can say that I’m (mostly) back to a positive place.  I’m grateful to feel well enough today.  I’m grateful to be going through this at 48 instead of 78.  I’m grateful to my friends for their notes of encouragement and repeated offers of help.  I’m grateful to my mom for spending the better part of the week with me, caring for me and my son, cleaning my house and weeding my yard (oh, to have her seemingly endless energy!).  And I’m grateful for my general good health, which I know will return in roughly six to eight (short) weeks.