Thanking God for another wonderful year of life. There is something in each and every day to find special…even if it isn’t always good. There is a moment or a minute, or even an hour in the day that is remarkable in it’s own way. Over this past year I have truly experienced life. It has been most remarkable for being just plain ordinary. There is a blessing in that. Another Christmas, another New Year. The blessing of my daughter moving in with me, and the sorrow of her moving out and on with her life less than a year later. Savoring the wonderful time together. Having the blessing of being together with my mother and my sweet Robin for another Thanksgiving dinner. Twenty one years ago, I was not able to have food at Thanksgiving, it was all being given to me through an IV, along with some of the ,most wicked poisonous drugs known to mankind. It was awful, but it was so special at the same time. There was no way of knowing that that horrible medication and my beautiful sister’s gift of bone marrow would give me 21 more years of turkey, dressing, mashed potatoes and gravy. Sounds so trivial. So ORDINARY. I’ll take it…and 21 more. Or more. Life…it is good.
It has been 7,306 days since mom, Robert or I have written in this book. I’m going to let that sink in a few moments for myself.
Seven THOUSAND, three HUNDRED and SIX beautiful, difficult, victorious, gut wrenching, heroic, miraculous days.
I cannot speak to why January 4, 1995 was the day the journal ended, and there is no possible way to recount the particulars of what happened between that day and today. I can, however, share with you the following…
By the Grace of God, I have outlived my end-of-life prognosis by 20 years, 5 months and 20 days.
I have watched my daughter grow up to become THE. LOVELIEST. woman I have ever known. I have never loved anyone so deeply in my life. Only now am I truly experiencing the depths of joy that bringing another human being into the world feels like. Twenty extra years of loving her, being loved by her and experiencing her triumphs and sorrows with her: awkward middle school challenges, high school, proms, hair disasters, zits, friend drama, boyfriends, college, meeting the love of her life, and settling into domestic bliss. Simply, simply beautiful.
I have seen my mother…my caregiver, my precious angel…celebrate 20 more birthdays and retire from the life’s work that sustained us as a family. I have continued to be the recipient of her enormous, unfailing love and spirit, and she continues to cheer me on at every whim and turn. I am here because she is who she is. I can’t say any more about her, because I would then have to say everything that is incredible about her, and that would be a 10,000 page book.
I was baptized.
I had no assurance I would even live to see my niece Mikayla come into the world, but was blessed by her early arrival 11 days before I went into the bone marrow transplant unit. My sister-in-law Shari, in the grace of her beautiful spirit, asked me to be with her in the delivery room to help bring this beautiful baby into the world. I have lived to see her become an incredible, beautiful, talented, independent and unbelievably kind 20-year-old young woman. How many ways can one say…blessed?
I lost my father, my beloved “Popi” to throat cancer. I was able to care for him, love him through it and be at his side when he took his last breath of life.
I was the maid of honor at my angelbaby sister Kim’s wedding to her wonderful husband, Jonathan…and in that, I gained a brother.
My “boys” became men and fathers to, collectively, 4 beautiful children…”step-grands” if you will, that I love dearly.
My then 3-year old nephew Alex is now the handsomest 23-year-old man in the world, and I just got news he’s made me a great aunt. That’s just the greatest. Stuff. Ever!
I was the recipient of that phone call that no one ever wants to get…”there’s been an accident” and the utter terror of the loss of my step-daughter Marcella. November 9th never gets easier.
I have spoken in front of thousands of people, bringing a message of hope and healing.
I have been invited into hundreds of people’s lives who are dealing with cancer.
I have made and lost precious friendships.
I have been awarded accolades that I don’t deserve.
I celebrated my ex-husband finding love again and marrying a lovely and wonderful woman, and have also despaired with them during his cancer battle.
I learned that truly loving someone comes from a place of selflessness.
I have endured the heartbreak of divorce, remarriage and divorce again.
I met my best friend. Her love and unwavering true friendship has brought me more joy than I ever imagined possible, through thick and thin. I have faced the torment of almost losing my best friend, twice.
I learned another language.
I have had my heart broken into a million pieces.
I started a non-profit organization that has helped thousands of people facing bone marrow transplant.
I became a hospice nurse.
I’ve written poetry.
I have witnessed acts of heroism.
I’ve experienced an indescribable amount of loss.
I have taken wonderful trips to far off places.
I have lived in 7 different dwellings in 5 different cities, in 3 different states.
I have seen the advent of things that did not exist on day +35 post transplant: our first home computer, the internet, social media, 9/11, two wars, seeing a child I helped raise go off to and thank God return from both of those wars, three presidents, The Walking Dead, iPhones/iPods, bluetooth, digital photography and so many more astounding inventions, creative processes and genius at work in the world.
I have been reunited with old friends in the most wonderful and unexpected ways.
I have laughed so hard I thought I would die.
I have wept so hard I thought I would die.
I have had 19 extra Christmases and New Year’s Eve’s.
I turned 50.
…and so much more.
As I celebrate the arrival of this new year, on this my 7,341st day of extra time, I do wonder what the next 20 years might hold in store. But I am reminded of the words to the song, “The Dance”…
“And now, I’m glad I didn’t know…
The way it all wound end, the way it all would go.
Our lives are better left to chance…
I could have missed the pain, but I’d have had to miss…the dance.”
And it has indeed been an undeniably BEAUTIFUL dance.
Slept pretty good. Very cold outside.
Went to outpatient BMT clinic. Her counts are coming back up a little except her hemoglobin is 8.0 We were told we could go home for a long weekend…Thursday through Sunday!! Yay!!!
Appetite good, but very small. Hard time with bread and sticky foods. Feels like her throat is very constricted and small.
Still very tired.
Slept a little better.
Very cold outside, no hospital today. We are hibernating all day.
Angel Watson called.
Donna Johnson called to let us know that Margaret Scales is having a hard time in her cancer fight. She’s the dearest friend. Please Lord, don’t let her give up. Nothing seems to be helping her medically. She has to fight. Kendra feels so helpless. She loves Margaret so much. She can’t talk about it, all she can do is cry. So we wrote her a letter. Lord, please make her well and not to suffer.
Tasting more of different foods. Feels very tired. Slept a lot today.
Went to outpatient at hospital. Counts are going down a little because of the Gancyclovir. Must have it though to prevent CMV.
We went to the grocery store, first time. She has a much better appetite but only small amounts at a time.
Arlene called. Dorothy B. called.
Not sleeping well, awake every hour.
She’s trying so hard to cope with all these strange feelings…anxiety, depression. We cry a lot.
Happy New Year!!
The family is all together and we’re so happy to be home! Kendra got to feed Mikayla. Felt so proud and blessed to be able to be strong enough to be there.
Have to go back to Birmingham today. We’re driving back so we can have a car.
Tom and Carol got married!!
Very difficult to leave, especially Jessie and Robert. Her anxiety is so hard for her to deal with.
Mom writes: Happy New Year!! The family is all together and we’re so happy to be home! Kendra got to feed Mikayla. Felt so proud and blessed to be able to be strong enough to be there. Have to go back to Birmingham today. We’re driving back so we can have a car. Tom and Carol got married!! Very difficult to leave, especially Jessie and Robert. Her anxiety is so hard for her to deal with.
New Year’s Eve. Went to Dothan for a new wig.
Exhausted beyond belief. Slept all afternoon and evening. Woke up for midnight New Year’s Eve hugs (no kisses!) and went right back to sleep for the whole night.
Her appetite is quite good and she’s starting to taste more. The nausea’s almost gone.
Kim and Alex spent the day and night with us.
Good news!! We can go home to Ozark for the weekend! Robert is coming for us and we’re going home!! Can’t wait to see everyone!!
She slept most of the ride home.
Doctors suggested no company other than family because of exposing her to colds, infection, etc.
Psychologically did wonders for going home. It’s her main mission at this time.
Ricky and Shari have colds. I have to be more careful about wearing a mask.
John Gaudet and his work partner stopped in but only came to the door.
Mary, Bob, Tootsie, RJ, Ricky, Shari, Phillip, Mikayla, Kim and Alex visited.
They said I could take ibuprofen, so I did. Along with my oxycodone. Slept pretty well last night. Felt sleepy after Robert called this morning at 8am. Went back to sleep till 11:30! Lazy Bones!!
Ate a good breakfast and lunch. Ibuprofen seems to be helping the cramps.