Tuesday, June 25, 2013

No Remission – No Recurrence – Just Resilience!

Boy, I can’t believe it’s been over 6 weeks since I’ve written anything.  It has been an interesting 6 weeks though.  I’ll try to do a brief summary to bring you up to speed.  I know you’re all waiting with baited breath (HA!) 

Well, on May 28th I had what was to have been my final of the 6 chemo treatments in this cycle.  At least I hoped it would be my last.  I should have known better – my CA125 numbers weren’t that great, but they were coming down, and I was so sick of the treatments.  The side effects were piling up and lasting longer than before.  I was feeling like a big wimp (so much for the rising Phoenix!).  The Taxol part of the treatment went well, but, when the Carboplatin was hung things changed rapidly.  I began having a reaction – blurry vision, itchy hands and ears, dizziness, shortness of breath.  I sat there assessing my symptoms but before I could finish I had 6 nurses, a nurse practitioner, and a crash cart at my side. The drug was stopped and, after a barrage of injections and other medications, I was placed on a constant monitoring status - sort of a “house arrest” but in a chemo room.  My poor husband was beside me through it all.  He told me later that he looked over and saw me slumped in the chair, looking very gray and distant.  I thought I was assessing my symptoms – I think I was actually passing out! 

Okay, so much for the Carboplatin part of my treatment.  The drug does have a reputation of building up and biting back somewhere around treatment 5 or 6.  It is now on my growing list of allergies.

So, we were now in a situation where that chemo cycle was technically over, but my CA125 was still near 100.  Time for another PET scan.  The scan results showed pretty much the same active spots as 6 months before – but at least no spread.  Strange how your perspective changes over time.  A few years ago I would have been devastated – now I’m thrilled that it hasn’t spread!  I guess that’s what the saying means about “learning to dance in the rain.” 

After an exam and an in depth conversation with my Guardian Angel (Dr. M.) it was decided to continue the Taxol alone for a few treatments and see what the CA125 does.  I told him that the 7-10 days following the last treatment, I had had much less in the way of side effects than usual.  I’m guessing that the Carboplatin was causing most of the very unpleasant ones.  He agreed that Taxol could stand alone as a treatment and it may work well – only time will tell.  But I needed a break – and, before I could mention it, he suggested some time off. 

The next day my son and his family were arriving from New York and my daughter and granddaughter were coming out to the beach too.  It was a long planned mini family reunion.  We had been looking forward to it for so long.  I thought we would be celebrating the beginning of a new remission period – but, instead we just celebrated being together.  That was the most important part anyway.  Having a 3 year old, a 5 year old, a 12 year old, and 5 adults who are rarely in the same state, let alone the same room was mind-blowing for me.  We had blow-up mattresses on the floor, a huge cavern being dug in the sand – complete with sand couches and a sand coffee table – races in the pool, a dining room table filled with food and surrounded by people and 5 conversations at once!  We saw ghost crabs, and hundreds of pelicans, cardinals and sea turtle mounds – kite surfers, pontoon helicopters, and bi-planes towing huge signs and I got to read the little ones bedtime stories.  It was the very best of times, but the goodbyes were among the very worst.  I had realized during this visit that I was no longer able to do what I used to do only a year ago, during our last visit.  The drugs are taking their toll, but they make me appreciate everything and everyone so much more.  We’re planning a trip up north in the fall to see them and, hopefully, another special reunion early next year for our 40th anniversary.  I may not be able to do EVERYTHING but I can do the important things – kisses and hugs and reading stories are high on my list!  

So I’m into my last week of R&R before the chemo starts again.  Next Tuesday begins...  I’m actually not sure what it begins.  Should I be calling this TX#7 of ???   or TX#1 of a new unknown protocol.  I think I like that better.  Stay tuned and please keep up the prayers.  I know without a doubt that your prayers are what’s kept me going this far.  In August it will be 5 years since my original surgery and the beginning of my first chemo.  I just heard of a woman in Naples who is celebrating her 10th anniversary of her surgery.  I now have a new goal – to beat her.  Have I told you how competitive I am??? 

Thank you to my enormous and very special support system – my amazing, patient husband; my remarkable, involved children; my very special and so loving grandchildren; my steadfast family and friends - all of whom make me feel loved.  Last, but most assuredly NOT least, the best medical team anyone could ever wish for.  You make me feel safe!