Barbara ’s Story

Site created on August 12, 2018

Welcome to my CaringBridge website.  I was diagnosed May 1st, 2018, with breast cancer.   I am using this site to keep family and friends updated in one place.  I appreciate your prayers and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Barbara Nicolosi

Back on May 1st when I was diagnosed with Stage 2 breast cancer, I was absolutely opposed to the idea of chemotherapy.  There was no way I was going to submit myself to THAT, whatever that was, my main source of information at the time being hearsay. I spent way too much time back then sapping my spirit by watching horrifying conspiracy videos like, "The Truth About Cancer," and reading books called Heal Breast Cancer Naturally, which nearly convinced me that the medical profession is not to be trusted. There's a whole anti-Western medicine network that plays up how bad and futile conventional cancer treatment is, and for a few weeks I was certain Big Pharma had a dartboard with my name on it somewhere.  (This is actually the stuff of another journal entry.  Hmmm....)  Anyway, thank God for a sensible husband who bravely shared with my non-compliant self, "Babe, you aren't going to diet and exercise cancer away," and for a sister survivor, Val, who walked this way eight years ago and assured me, "You got this."  It also helped that when I met my doctors at City of Hope, I knew right away that they were not the stuff of profiteering off the fears and lives of their breast cancer patients. They are good, smart, dedicated people, and they know they are saving lives. But I was definitely not on board in the beginning.  (I remember my oncologist laying out a plan for me to do radiation after surgery. And then I said, "All the research I've been doing has indicated that radiation should come after chemo." And my doctor said, "Yes, but you don't want chemo." To which I replied, "But, I'm an idiot!  Don't listen to me!"  Such a relief we cleared that up.)

Now, about five months to the day of my diagnoses, I am halfway done with my chemo treatments.  I am doing a sequential chemo regimen of Adriamyacin (chemical name: doxorubicin), and Cytoxan (chemical name: cyclophosphamide), for 8 weeks, followed by 8 weeks of Taxotere (chemical name: docetaxel).   This regimen has been shown to decrease recurrence of cancer through eight years by as much as 20%.
 My baby sister, Val the veteran, assures me that the worst is over, and that the "T" drug is a breeze compared to the "A/C."  Well, I have to be honest and own that, probably due to everybody's prayers, or maybe God just having mercy on me because I'm a whiney wimp, but the "A/C" really hasn't been that bad. Certainly nowhere as bad as in all my terrified phantasms of the early summer.

So, here I am appropriately celebrating the halfway mark, but also wondering if anything bad is ever as bad as we imagine it is going to be?  Isn't the worst part of any bad thing, the time before it really starts, when it is thriving on our terrified imagination, having it's way with us without anything opposing it, because we don't have the grace yet to counter it?

I was blessed early on in my cancer journey with the acquaintance of several women survivors, who said perfect, if utterly lacking in drama, things to me like, "You will get through this. Just breathe," and, "It gets better once you start treatment."  I was so overwrought in those early days, I'm not sure I really believed what they were saying to me, but I believed they believed it, and there was a measure of hope in that.  It was my dear friend, and PhD cohort companion, Susan, a breast cancer survivor for nearly twenty years, who said to me with a convicting wryness, "Nothing about this is going to be as bad as you think it is."  For some reason it reminded me of a line in one of the Star Wars movies where someone says to Hans Solo, "We can pay you more money than you can imagine," and Solo responds, "Well, I can imagine a lot!"  When Susan said that to me, I remember thinking, "Well, clearly, you don't have as good an imagination as I do."

But here I am halfway done, and while I'm certainly grim and resolute about my time in cancer world, it's also absolutely true that nothing has been as bad as I thought it was going to be.

The surgeries were more tedious than painful, and the recovery was nowhere near as bad as the time I had a torn ACL repaired.  And, in my case, the surgeries were not disfiguring, as my surgeon opted for breast conservation.  So, all that torment about being an amputee, suffering agony for months, and having my womanly figure cut off, was for nothing.

And then all the medical procedures I've gone through - scans, and xrays, and biopsies, and blood draws, and consults, and evaluations, and one four day hospitalization - all of it has been much more a trial of patience than actual discomfort.  I've actually found being in doctor world, more often then not, interesting.  Which part of me hates, but that's who I am. I like to learn.  So, I find it engaging to observe and talk to the nurses, doctors, and techs. These are very smart, caring people, and one could do worse then be with such folks for extended periods.

And then the chemo. Back in May, I had visions of myself wrapped around the toilet, puking my guts out night after night, wearing my body into a frazzle of its former self.  I saw myself with a deeply grey pallor offset by blood shot eyes, bald and weary, barely cognizant of life passing by all around me.  Absolutely none of that has been true. Not one speck of it. I say this particularly for other women out there diagnosed with early stage breast cancer.  Times have changed, thank God, and, for myself, if I suffer bad symptoms, it's usually because I am not doing something my doctors or nurses have been telling me to do. For example, last week, I had very bad mouth sores.  But I also had cut out doing my five times a day rinsing with the Radiomix, because I don't like the taste. So, that's on me, then to have to accept that in some way I am choosing the mouth sores by not having the discipline of taking care of myself. Every side effect from chemo has a remedy now, usually two or three remedies.  And then there are remedies for the symptoms of the side-effect remedies.  

So, as of the halfway mark, I haven't thrown up once.  Not even close. Not even one real dry heave. I've been queasy quite a lot, and not real hungry, but it's been more like living with a persistent flu then that hellish cancer monster we're all living in fear of.  When I start to feel queasy, I pop one of my four anti-nausea meds, and then it becomes manageable. The constipation from the anti-nausea meds is tough, but less so when I do the four or five things my nurses have told me to do.  When I don't do them, I suffer.  Again, chemo is, eminently manageable if you decide to really play the game.

I imagined I'd be crying myself to sleep a lot, in fear for my life and isolated from everyone around me who doesn't have a deadly disease. Well, I've had a lot of half sleepless nights, which is nearly all due to the anxieties of cancer, and not cancer itself. But I've never felt completely alone, probably because of all the prayers people are saying, but there it is.

I thought losing my hair would be a terrible humiliation and an ongoing source of suffering. It hasn't been. It's been a nuisance. My head is itchy a lot, and at night it's cold, so I have to wear a coif.  But I've only shed a few tears, really.  And then you pick yourself up and cope. Because you have to. And because it really isn't as bad as all that anyway.

And I know that even if there is bad news for me with cancer up ahead, and it recurs, and maybe it even threatens my life, that it still won't be as bad minute by minute as my terrors of it two or three or four years before it actually happens.

Nothing is as bad as we think it is going to be. The reason it is worse in our imagination is because we do not yet have the grace or strength to cope. You only get that in the moments when you need it.  You don't get the strength to cope with anything three months before you need it. The strength to cope comes every day as you are engaged in the fight.  It comes in the wisdom and kindness of fellow sufferers and survivors. It comes in the experience and confidence of nurses and doctors. It comes in the love and prayers of family and friends.  You get the stuff to cope as you need it and not before. Which is a perfect segue to Psalm 121, my prayer for the halfway mark.

Psalm 121A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

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