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

What's Been Happening

First, some really good news:  I am a Grandma!  Connor Nelson Chose was born on October 22, 2010; 6lbs 8oz; 20 inches long and I was lucky enough to be at the hospital when it all happened.  Magical!  He is, of course, the most beautiful baby in the world.

OLD NEWS     I was going to write:!!!!!!!!!!ZERO LEUKEMIA CELLS!!!!!!!!!!!!!! and start the celebration, but the very day I found out the test results and was supposed to go home, I started running fevers. Not just any fevers, but as high as 104.9.  This went on for days and completely wiped out the last bit of energy I had.  They put me in the Intensive Care Unit after my heart went into atrial fibrillation and had to be shocked back into normal rhythms. They put me on oxygen because I had water around my heart and lungs and I couldn’t get enough air without panting.  I was so weak at the end I couldn’t make it out of bed without assistance. Ron stayed 24 hours a day at the hospital because neither of us was sure I was going to make it.  I was a mess!  But thank goodness, things got better.  The fevers stopped and my wonderful Doctor said, “What this woman needs more than anything else is to go home.”  I could have kissed him!  I was still in terrible shape and Ron wasn’t quite sure how we would get from the car to the house but I would have gone if I had to crawl. 

THERE IS NO PLACE LIKE HOME     My first week home I slept at least 12 hours a night.  I think sleeping, uninterrupted in my own bed, was the best medicine.  After two weeks, I was done with the walker and the oxygen.  Yesterday I walked almost a half mile with our little dog Maggie.

THE LATEST   I received my second bone marrow biopsy results this Tuesday and I couldn’t be more delighted.  The Doctor said he could not give me any better news; not only are my bone marrow counts (white cells, red cells, platelets) almost completely normal, there are no leukemia cells! I am in remission!  This is a grand slam home run in my book!!

THE IMMEDIATE FUTURE    I have to check back into the hospital November 4^th and go through another full round of the trial chemo.  I REALLY don’t want to, but the Doctor reminded me the survivor rate is better for people who do back to back treatments.  I am determined to have a short stay and not get sick.  Hopefully, I will be out of the hospital in seven days or less.   Of course, it will take time to build up my immune system, but I hope to be spoiling my Grandson by Christmas.

THE UNDETERMINED FUTURE   I need a bone marrow transplant and unfortunately two of my four siblings are not a match.  We are waiting for the results of the last two and then, if they do not match, they will search the world wide registry.  I will have more chemo and maybe radiation to face then, but hopefully, also be cured.

I am sorry I’m so slow getting this out.  At first, I was too sick and lately, busy with recovering and being Grandma.   I think about all of you every day and how lucky I am to have you in my life.  Thank you for all your thoughts and prayers.  I feel like I am proof of the power of prayer and am very grateful.  I am living with a new perspective on life and wake up every morning happy and excited for another day.  Take care and please keep me in your prayers.

With love and gratitude,

Connie

Home Sweet Home

Connie was released from UWMC about 8:00pm Friday October 8th and headed home with her husband. They were both excited and nervous to be leaving the hospital after 2 months & 5 days. Connie was very weak as she walked from the car to her front door with her walker but the joy on her face as she entered her front door is something I will never forget. She just sat for a little looking around her house and was so thankful that she made it back home. She is still on oxygen at night but slept last night in her own bed in her own home. She said it is the first time she has felt safe and at peace for a long time.

Connie’s journey is not over, she still has a long way to go, but for now life is good.

Connie and Ron had to return to the lab at SCCA at 10:00 Saturday morning. All went smooth and she was in and out in a very short period of time. Her counts are up and she did not have to receive any transfusions that the doctors said maybe necessary. She returns to the lab again on Monday and Wednesday. On Wednesday she also has a doctor appointment. She will find out then when her next bone marrow biopsy is, possibly on Friday (as an outpatient) and if they find no Leukemic cells, she will be ‘in remission’.

Being home is the best medicine. The change I saw in Connie from Friday night to Saturday was amazing. She has regained her determination and feistiness to beat this illness. She is beginning to eat more, has read some on her kindle and even watched some TV. A big difference from being in the ICU only 6 days ago.

Connie continues to say “I could never repay everyone for their kindness and all the things people have done for me if I worked at it for the rest of my life”. She is so appreciative. She still intends to send out ‘Thank You Note’s’ when she is stronger, even though we tell her it is not necessary and everyone is just glad she is working to get better.

So on Connie’s behalf, until you hear directly from her again, thank you, thank you, thank you for your prayers and get well wishes.

Zero, Zero, Zero!!!

Well the doctor came in and gave us the good news. Connie has zero leukemic cells, but she also has zero other cells. This is exactly the results the doctors wanted to see today.

So what does this mean. Well in a couple weeks or so they will do another biopsy to see if any leukemic cells have come back. We did not talk about the next course of treatment because it depends on what they find with the next biopsy.

The doctor gave Connie some strict orders, focus on the good news and take each day as it comes. As she put it, "be in the now".

Connie will still be in the hospital for the next couple weeks until her counts come back up. Her jobs is to get up, do laps around the floor, eat well, do her breathing exercises, and stay "healthy", no fevers, etc.

We will keep you posted, but today Connie received the best news that could have been received.

She gave a big WOO HOO!!! when she heard the news.

Thank you for all the good thoughts and prayers, somebody must have been listening. :-)

The Latest Hurdle

I wanted to give you all an update on how Connie is doing.

It has been a rough week for Connie, as many of you know she was within a half hour of being release from the hospital on Sat. 9/25 but started running a fever. She ran a temperature from Sat. until Thursday anywhere from 100 to 104. On Thursday it seemed the worst was over as she stopped running such a high fever and was pretty much back in the normal range.

On Thursday around 10am, Connie developed an irregular/elevated heart beat, this in turn caused her blood pressure to drop. The doctors decided it would be best to move her to ICU to more closely monitor her. After a couple different types of treatment, the doctors were able to get the heartbeat under control and her blood pressure back up. These symptoms are all a result of the chemo she had been receiving. Unfortunately though, this has happened a few times now since Thursday, which means that Connie remains in the ICU at UWMC.

Connie had me take this photo so you could see the many different IV's they had her on. As we like to call it Fred (the name that her IV pole was given) and her many cocktails. Connie is a braver woman than I, I know the last thing I would request is to have my picture taken.

We are hoping that the bone marrow results will be back on Monday from the biopsy they did on Friday (there is a chance that we may not hear anything until Tuesday though). Once we know something we will pass this information on.

As you can imagine it has been a tough week for Connie and her family, please keep them in your thoughts and prayers.

The Latest

It's been a little bit since the last post so I thought I would let you know what the latest is.

Connie was all set to go home on Sat. discharge papers in hand and was ready to walk out of there and head home. They took her temperature one last time and she was running a 100.7 fever. :-(  The doctor came in and said with with fever there would be no going home. Later that night she spiked a temp of around 103 and continued to run a high fever yesterday along with being sick to her stomach.

Today she was doing a bit better and her temp and gone down to around 101, but she is exhausted and has been sleeping as much as possible (when you are sick and in the hospital they don't let you get a lot of sleep like you would if you were home, they are in all throughout the day and night taking your temperature and pushing a variety of meds, so not a lot of rest to be had.)

With her running such a high temp and being sick the doctors have pushed back her being able to go home for at least a couple of weeks. As you can imagine Connie was devastated by this news.

Please keep Connie and Ron in your thoughts and prayers.