Keeping stride with the whole process from diagnosis of breast cancer to life beyond treatments is a skill we are developing slowly.  We don’t know if it will help anyone to hear our thoughts on this, but wanted to put some together.

B: I think that once they stage the cancer and define the treatment plan it is important, as a participant, to not listen to the results of subsequent tests or pathology reports.  OK, let me explain.  Our Oncologist asked us at our first meeting if we wanted to hear the “worst case scenario”.   P asked for it and so we got it.  Once was sobering, but fine… I think the valuable question to ask when the Dr. has new test results is “Will this change anything in our treatment plan?”  If they answer no, then ask yourself do I really need to know this?  How fragile am I at the moment?  If the answer is “yes”, then either for good or ill you have to go in where angles fear.  The emotional highs and lows make the trip harder.  In order to have the energy and the optimism necessary to stay on track I think it is important to control the information you take in at least while you are in the middle of the treatment.

P: I think I mentioned a few entries ago that I’m learning what to pray/wish for.  ENDURANCE not test results.  When people have seen or heard me post surgery many have been surprised at the fact that I was up and about, or the sound of my voice.  Some actually tried to use the word ‘normal’ in a sentence like “you sound…….normal”.  This I think was the result of experiencing how the chemo affected me, and getting stuck there in sympathy or love.  I had frequent reminders from some that this will pass, you will come out the other end, keep on truckin’.  Do marathon runners hear the fans when they give them encouragement at mile 10…mile 17…mile 20?   Do ironmen and ironwomen hear us when we shout encouragement after the grueling swim and before the cycle ride?  I think they do, they must or else how could they make it to the finish line?  Intrinsic motivation may do it for some, but crap, I could not do this alone.

B: I am not a long distance runner. I’m a sprinter. So these metaphors of endurance are daunting to me. Obviously it is important to play to ones strengths. And so for me, I set my sights much closer in, about 5 days. I can sprint through 5 days. So, when we were dealing with the Chemo, the 2 week cycles, broke down into 5 days of being “ill” and 5 days of feeling progressively better, with 3-4 days of slop. Similarly, I broke surgery up into a set of sprints that I could manage. The metaphors are important so important that you need to pick ones that really work. Too, I haven’t felt the need to argue or philosophize about the difference between our metaphors. Cancer is a big tent, and “Whatever gets you through the night.”

P: At first diagnosis when I was incubating in Tucson, I was so focused on getting the word out to loved ones and learning about the value of second opinions.  It WAS the test result that changed the course of our lives.  It was at that time that we’d heard the word “neoadjuvant” for the first time.

At the first neoadjuvant chemotherapy infusion I was focused on my  reaction and got busy coping with the various and sundry effects on my body, mind, spirit. I tried to protect my loved ones from it to no avail.  WE were in this together, it was not just me.  At subsequent infusions I remained focused on making it through the most challenging first 3, 7, 10 days with something in tact, maybe it was my dignity.  Every once in a while I’d check in with my body and thought I could feel progress on the size and shape of the tumor.  But most of the time I had my head down like a good Taurus and was focused on one thing.  At that time it became difficult to see the ball.

I emerged on day 15, cycle 4 feeling a huge sense of relief, and found myself going under the microscope again for tests, scans and meetings with oncology and surgery.  It was a relief to hear PET scan was negative again, it was a relief to hear that perhaps what remained was scar tissue, it was both exciting and disappointing to hear comparisons between early ultrasound/MRIs and new ones, so much progress and yet concern still remained.  It was both expected and disappointing to hear that mastectomy was the next step on this long and complicated path.  But it was NOT complicated for the providers.  This IS the treatment for this stage and type of cancer.

We thought about second opinions, at what point are they moot?  If things came through negative all the way, I’d want to be really sure. BUT pathologists spending hours looking over microscopic cells, normal ones, chemo affected ones, ones that still were tumor affected…what would another opinion tell us?  How likely was it that a pathologist would mistake a health cell for an unhealthy one?  How long did we want to wait for the next phase of treatment waiting for more results?

After mastectomy we and I felt such relief.  Well, I think B and I did.  The kids only saw a body that was unfamiliar to them, and I wouldn’t call their experience relief.  It was an aggressive way to rid my body of this cancer.  SO was chemo therapy with Adriamycin and Cytoxan, very aggressive drugs.  Why then would we even stutter and not follow through with recommendations for an axillary node dissection when the tumor cells were still floating about?  I think it was during that conversation with Surgeon that I wondered why the hell we would step off the path?  I’m recovering from mastectomy, why not recover from both at the same time?  At this end of surgery, I’m SO glad we made that choice…

Discussion with oncology identified that the only thing in question is whether or not to use radiation in addition to the final chemotherapy.  THIS would be determined by the lymph node involvement.  Chemo therapy is 12 weeks at this point in the treatment regime.  It’s so easy to get caught up in the 12 weeks and lose sight of the ball again.  12 more weeks without hair, 12 more weeks with questionable reactions, 12 more weeks of uncertainty about whether or not I could get back in a routine about living rather than treatment.

B: One of the side effects I’ve noticed for myself, is disrupted sleep, and cancer nightmares. The nightmares are sometimes just a continuation of P’s situation.  Sometimes they are fears for myself or other loved ones. I’ve mused over the years that what I fear isn’t death, but infirmity, incontinence, and incompetence. I think that our cancer fight brings that into stark reality, though, it isn’t as easy to say emphatically that I don’t fear death. Is it that we fear death, or that we fear the unknown, is it that we fear facing it alone? I don’t know, but I do know that I dread a lingering life that perhaps doesn’t even see death’s approach. And I can imagine living this way in perfect physical health. In any case sleeping when one can becomes really important, naps at other times become important when one is awake in the early morning.

P: I am not dreaming much at all.  In fact B is accusing me of taking all the sleep (something I’ve been guilty of in all our 20 years together).  I wear cotton hats at night and they are big enough to migrate over my eyes as I sleep, and every once in a while I am aware of B peeking under the brim to see if my eyes are open or shut…it’s pretty cute actually.  I don’t like that B cannot get all his rest at night…and I am grateful for my sleep and the absence of unpleasant dreams.  When I wake up, every single day, I experience this body, and I say to myself at least once something like “wow, it’s really me”…or “this is my body from now on.”  Denial works its wormy way in and I get caught in thinking that this may be a very long dream.   I am going to live with this body and the reality that cancer can return for the rest of my days.  It’s something I did not think about at all when I did not have cancer.  It’s different for me than thinking “I could get hit by a bus today”.  I have never said that to myself every day I venture out.  I don’t know if I fear death.  Like B, I don’t like the idea of not being able to take care of myself.  I suspect I’ll talk more about mortality in another entry because I could go on here.   I must say though, that my plan is to LIVE cancer free and not be worrying about the intruder each day.  That will take time.  THAT’s the ball.

We’ve mentioned occasionally throughout this blog that we work as a family to not choose suffering.  This has enhanced my awareness of the love that has always been in our lives, in our home, around us in our community and from afar.  I think this experience has sensitized us at a time in this world where it is so easy to be desensitized.  It has awakened me.  Funny, I never even knew I was asleep. It’s so easy to get caught up in the mundane.

B mentioned in an early entry that the time for cancer diagnosis and treatment is something like gestation.  9 months and we come out the other end.  Not with a baby, but with a body that is rid of a significant amount if not all of the cancer.  The baby is the renewed ability to live in the moment.  At least for me it is.  The delicate blalance for me is keeping my eye on the ball while living in the moment.