Dec 30 Update from Connie

I hope all of you had the very best of Holidays and are enjoying your time off.   I was lucky enough to spend Christmas with my family and it was wonderful!

I know I haven’t updated on what’s going on for quite a while and I apologize for that.  There is good news and bad news and just plain tedious news.

First the good news:

I finished my fourth round of chemo and am happy to say I’m still in remission.

My immune system was strong enough that I got to visit with some old friends and family and be out and about.

It isn’t definite yet, but it sounds like the transplant team may have found a donor.  The potential donor could not be contacted until after January 1^st, so I should find out soon.

I have dark peach fuzz hair and my eyebrows and eyelashes are back so I look a lot less like a GE light bulb now.

The bad news:

After my last chemo round, my blood counts all looked good and I had permission to go see friends, go shopping, etc., but I still had no appetite or energy.  Everybody, including me, thought it was because I had gone through four rounds of chemo and it would take more time to completely recover this time.  Unfortunately, after blood tests, it was discovered I was in acute renal (kidney) failure.  My kidneys were functioning at about 15% of normal.  They weren’t sure if it was the chemo or the drugs that caused it.  My opinion was, “You broke it, you fix it.”   I spent almost a week getting my kidney flushed with intravenous fluids; consulted a kidney specialist; and went on a high salt diet.  (High salt diet sounds weird to me too)  Anyway, I’m back down to almost the normal range and I’m hoping to improve more.  The kidney specialist said I may never get back to what I was before, but something in the normal range is what we’re shooting for.   

The I’ve had enough already, tedious news:  

I am typing this from the Seattle Cancer Care Alliance where I am having the fifth round of chemo pumped into my veins.  Blah!  Normally I would be in the hospital, but the insurance company would only pay for the experimental chemo if I was an outpatient.  I don’t know the reasoning, probably cost.  At first we (especially Ron) were a little nervous because I had some pretty serious side effects from the chemo before, but so far all is going well.  We are at SCCA for about seven hours a day getting two types of chemo, then home.  Tedious, tedious.  I have three days left after today. 

Unfortunately I will be back in home detention (no visitors) for a while and worse than that, I will lose my peach fuzz hair!

 

I want you all to know how much both Ron and I have appreciated your love and support.  I really don’t know how I could have gotten this far without you.  Please keep me in your prayers and well wishes because I still have a long way to go. 

And lastly but not least, I again have to thank the greatest people in the world; my Boeing coworkers.  I wish there were words enough to tell you how much we appreciated all the hard work you put into your bake sell and your generosity to Ron and I.  Thank you, thank you, thank you and God bless you all.

With love and gratitude,

Connie
 

A Short Note

I know it has been a very long time since I have written anything, but my biggest fear is I will bore you with my medical trials and tribulations.  I think about all of you constantly and, believe it or not, I would LOVE to be back at work complaining about Mondays, and parking, and vendor shortages……

 

NOVEMBER 4:  Back to the hospital for my first consolidation round of chemo.  I REALLY hated to go because I was just beginning to feel like myself again.  The chemo went smoothly and after five days and one day for the magic cells they let me go home on day seven! I had no immune system so we were VERY careful of any germs, but I still ended back at the hospital.  I started running fevers again after only two days home.  SOOOOOO disappointing.  They did cultures on every secretion that a body produces, and still couldn’t find the reason for the fevers.  Eventually the fevers lessened, I started producing my own white cells again so they sent me home with a cocktail of antiviral, antifungal, and antibacterial medicines.  Ron has become my UN…..Unregistered Nurse. He thinks he should get a business card that says: 

                                                     RON CHOSE, UN

                                                You get what you pay for.

Actually, I know I couldn’t get through this without his wonderful care……so I guess I’ll keep him.  J

DECEMBER 14:  I meet with my bone marrow transplant team.  They started searching the world registry after we found none of my siblings were a match.  I’m told it could take weeks to many months, but they want me to be ready as soon as one is found.  I am excited about this meeting because I have tons of questions. 

DECEMBER 26: After some negotiations, we had my next chemo moved from the week before Christmas to the day after!  Soooo, between now and the 26^th I get to enjoy the Holidays!   I am still weak, and bald, and sometimes chemo brain addled, but I can have company or meet up with people as long as no one is obviously ill.  AND I WOULD LOVE TO SEE YOU!  I feel like I have been in isolation way too long.  I’ll try not to be boring.

LASTLY:  To say Ron and I are grateful to my co-workers and friends is an understatement.  To all of you who cooked hot dogs and all of you who ate  hot dogs……THANK YOU.  Your generosity and kindness has touched us more than you’ll know and we will be forever grateful.  I believe there are Angels on this earth and I know they work at Boeing!    You are my greatest blessing.  Thank you again.

With Love and Gratitude,

Ron & Connie Chose