We Are Survivors!

I had the privilege to be asked to be a panelist at the National Marrow Donor Program's Annual Council on November 3, 2007. November is "National Caregiver Month." Personally, I think we need National Caregiver Year... but... Here is the presentation I prepared for it. I only had time to give part of it, but it's very interesting. There were four caregivers, three were spouses. I was the only parent. There wasn't a dry eye in the house... I treated myself to waterproof mascara for this event. I definitely needed it.

PRESENTATION:

In 1994, my daughter Cristina, 19, was diagnosed with CML. She was getting ready to move back to NY to continue her education and I was going to move to Sedona, Arizona. We noticed that Cristina had these big bruises all over her body and so we went to the doctor who ran a routine blood test. We were notified on September 1, 1994 of the diagnosis. She was told by doctors that the best chance for a cure was a bone marrow transplant We lived off my savings, help from Cristina’s grandmother and friends. We found an unrelated donor and were set for May, 1995. However, Cristina went into blast crisis in March and had to have chemo to get her into remission to get the transplant. She lost so much weight from the chemo they weren’t even sure she would still be a candidate for the transplant. However, she managed to gain some weight so she could. She was pretty much half dead when she went into the actual transplant itself. And so was I.

I was completely unprepared. No history, she was so young.
Feeling horror, shock, fear, exhaustion, anger, powerless
Friends and family helped. Many disappeared. Many “strangers” helped
Became very isolated, couldn’t talk
Researched everything about transplants. Knew we were in for a rough ride. Didn’t know how rough.
Two years post transplant – life and death.
Next couple of years, still many complications, hospitalizations,
Next years, Cristina had several surgeries and was taken off disability-no longer has cancer
I was diagnosed with ptsd and put on disability
Having to be constantly vigilant because there were many medical mistakes

Challenges: what wasn’t a challenge?
Financial, lost life savings, bankruptcy, ruined credit, loss of ability to work (ptsd), exhaustion, dependence on kindness of friends, found out how few safety nets there are
Emotionally and spiritually devastating, tremendous pain.
Cried a lot when alone… driving around in car
Dealing with insurance, hospital staff, finances – day to day stuff
Always being secondary – never thinking about the cost to me to do this

What helped me get through?

Cristina’s courage
Trying to live up to her example
Love
Prayers
Friends and family
Dancing
Laughter
Music
Anything and everything joyful and beautiful I could find and store up in myself
Wrote a caregiver’s guide two years post transplant and have unpublished manuscript chronicling experience
The effects of transplant dominate my life forever
Cristina taken off disability, doesn’t have medical coverage, but has many medical issues.
PTSD with very area of life reminiscent of this.
Insomnia has made it difficult, almost impossible to work and maintain a relationship

NOT TO LEAVE THINGS THERE:

I found out how much courage, love, joy, beauty, kindness I have inside and can be.
I found out how thin the line is between sanity and insanity
I found out that even under the most dismal and horrifying of circumstances, that there is a choice in how to handle.
I found out how someone who has had everything taken away from them can maintain their grace, style, dignity and humor. My daughter is my heroine and example of how to "go" in the world.
Learning Acceptance
Privilege to have been the focus of so much love and prayers
Started doing Yoga Nidra meditation
Feel like I’ve been part of some GREAT WORK and in some ways cannot explain this work has been a privilege.

I'm Going to Rest Now. YAY!

I could never say those words during my daughter’s recovery. Especially for the first two ½ years post transplant. Gotta rest NOW... ALOT! Have to basically “relearn” how to do that. Getting some help from some supplements I’ve been taking. They’re very expensive, but they seem to be helping a lot. Thank God I have a very generous friend who’s helping me do this. Again, I’m so very lucky.

How does someone get to be as lucky as me?

Considering everything I've been through in life, and considering that I have anxiety attacks almost daily (mostly due to the ptsd), I still think I'm very lucky. The main reason for that is because of the people I have in my life. As I look back and take away all the feelings of failure, insecurity and just plain irrational beliefs about myself, I have known and still know some of the best people in the world.

Especially since my daughter's illness, I have changed a lot. Many friends literally disappeared. I don't know, maybe they thought leukemia was contagious. Maybe dealing with a life-threatening illness made them think about their own mortality. It was very hard for a very long time not to feel completely angry, resentful and hurt about the people who disappeared. As time has passed, however, I’m not so judgmental and I think about the people I’ve let down in my life.

Then I think about the wonderful people who stuck around. Literally through thick and thin, constantly hearing nothing but bad news; this was going wrong or that was going wrong or Cristina was having some surgery or another horrible procedure. I felt like “Typhoid Maddy” spreading nothing but misery and pain. But wonderful people hung in there with us… They are truly blessed and know what friendship is really about.

It’s also true that one never knows what life has in store. I never thought I’d hear the words, “I’m sorry Madeline, but your daughter has leukemia.” Life is not guaranteed. The next minute is not guaranteed. But I have learned to be grateful for what I have. My wealth is not financial. My wealth is my friendships. TRUE friendships that have stood the test of time, pain and unbelievably enough… through it all… LOTS OF LAUGHTER! I am one of the luckiest people on earth!