Acceptance---peggy's prompt of 11/08/14

Boy, I should be able to hold forth on “acceptance.”  That’s what the past almost eight years have been about for me….trying to accept that I have incurable breast cancer, cancer that has spread to other parts of my body besides my left breast (which is long gone),  to be “beaten back”  only to appear again in yet another spot.  Damn, I’m tired of this.  I guess that statement, in and of itself, proves that I have not yet reached acceptance of my condition. 

Part of the problem is that “my condition” keeps changing.  Luckily, it hasn’t all been downhill since March of 2007 when I was first diagnosed and started on this journey toward “acceptance.”  And most of the downhill sections have not been because of symptoms of the cancer, but because of side effects of the various treatments I’ve been through.  And, like the cancer itself, some of the side effects, once they appeared, aren’t ever going to go away, to go back to the normal condition.  Two of the big ones are lymphedema and peripheral neuropathy.  I’ve had minimal improvements in both, but always the improvements don’t last.  Sigh.  Now that’s another whole set of things to fit into the acceptance box.

Others are diminished sense of taste, which I lost, but then regained partially, likewise sense of smell.  This one can be a real problem as I have three cats, and they can really load up a litterbox in short order, so I have to clean it on a routine schedule as I can’t rely on my sense of smell to tell me that it’s time.  So if you come to visit me and it seems a bit odoriferous, just gently wave your hand in the direction of the cat box, and I’ll clean it post haste. Luckily Jonathan’s sense of smell is still intact, and he acts as the nose for me.

And now there’s a new side effect which apparently will not go away at all, but could continue indefinitely.  That’s the appearance of fibrosis—scar-like tissue under the skin—which has appeared and grown and spread under my chin and on the top of my shoulders, especially the left, and is caused by the radiation I had to that area (twice) in order to “beat back” the cancer that had spread to lymph nodes in that region.  This is a real complication for me, as I have gone from a young girl with a long thin neck to an old lady with a thick lumpy neck (not an inducement for me to admire myself in the mirror).  And to make matters worse, the last several recurrences of the cancer have been in lymph nodes in the neck and shoulder region, so when I feel a new lump growing, the question is:  Is this a progression of the cancer or a progression of the fibrosis?  One could eventually kill me, the other just makes me lumpy.  And perhaps just pushes on my esophagus and my vocal cords, making it difficult to swallow and to talk.  When (or if) it shuts off my airway, then I’m in big trouble.

Fatigue has also been one of the plagues visited upon me by the various toxic chemotherapies  and other drugs so necessary to the continuance of life—my life, that is.  And until my palliative care doctor prescribed Ritalin, which has become my favorite drug in the whole wide world because it increases my energy, I spent seven plus years forcing myself to carry on through each day.  I could get excited and energetic when around folks I like and enjoy, but back alone with myself, the fatigue would often just overwhelm me.  I spent a lot of early afternoons napping in my ancient blue chair on my porch in Asheville.  Not because I felt any better for having taken a nap, but because I just dropped off to sleep without intending to.  Things are better with the Ritalin, hooray, hooray.

It’s a testament to how little most folk know about metastatic breast cancer—and I won’t get on my soapbox here—that they think when MBC patients talk about side effects, they assume it’s about nausea and vomiting.  And that can be a problem, but never does it last forever, and usually it can be handled or at least minimized with anti-nausea drugs (or changing chemos).  But for me, the side effects I’ve just mentioned are the big ones.  And there’s a slew of little ones, too.  Like brittle fingernails, or nails that get discolored, or come off, causing pain, unsightliness, bother.  And rashes.  And itching.  And hair loss, or thinning, or changing its character.  And saliva that tastes like salt, or metal. And bloody mucus in the nose.  And dry lips and mouth (lots of people get mouth sores, too.) And constipation and/or diarrhea.  Oh, boy.  You can see why folks with MBC love to talk to another MBC patient—we get to compare notes about side effects.  My mother did the same thing with fellow rheumatoid arthritis sufferers.  Which reminds me, I forgot about pain.  Pain, soreness, stiffness.  And bones that get brittle and break (I’ve had three compression fractures in my spine, the last one a serious one that causes me to wear a brace, use a cane, take pain meds, and suffer back pain in spite of all that.

Well, enough of this.  It’s making ME depressed, no telling what it’s doing to you.  I tell you, though, when someone tells you that your health is everything, you’d better believe it.