leave, and then those from way up up north will come for the winter. They will hang around and provide lots of good entertainment. Bits of flashy yellow and lots of chirps make the mornings special.
THINGS THEY DON'T TELL YOU ABOUT LIFE AFTER A DOUBLE CORD BLOOD TRANSPLANT OR ANY TRANSPLANT
IT STARTED OUT AS A BUMP BECAME 2.5 YEARS OF TREATMENT. SURPRISE RELAPSE AND NOW LONG TERM SIDE-EFFECTS. NO COMPLAINTS, JUST REPORTING.
Monday, March 01, 2021
It Has Been A Year, and What a Year.
leave, and then those from way up up north will come for the winter. They will hang around and provide lots of good entertainment. Bits of flashy yellow and lots of chirps make the mornings special.
Sunday, February 28, 2021
It Really Has Been Nine Years
We are heading to the day. The day I consider the most important. It was the day when there was concrete proof the transplant had worked. There were balloons and there were cheers and there were orange slices on the day of the actual transplant, but I wanted to know that the cells had taken hold. I wanted to know it was working.
Mary-Elizabeth is 9 years out. She has more than 3285 days from the times of such despair. She has finished college. She has become a fully employed human being. She has faced so many many struggles with Post-Transplant B.S. She has grown into an amazingly funny, smart, thoughtful human being. The transplant really was a miracle. I enjoy every day that she is with us. Every day that she calls to complain that she looks bad in a swimsuit. Every day that she shares her chocolate chip cookies. Every day that she reaches out to check-in and just tells me she loves me. Every day that she is on this side of the world of reality, it is a better world.
I keep ending this blog. I don't add to it much anymore. I guess I should say that I have over a 150 unpublished posts. I sometimes question whether or not it is time to make a bold step out of this world of reflection and maybe focus on something else. I am coming to realize that even if I try, I won't/can not make a grand exit. It's not a choice to stay in Cancer World, even if on the edges.
It just hangs there. Not like the big flat overwhelming clouds currently gently dropping some Valentine shaped snow flakes, but the kind that you catch out of the corner of your eye. The little bit of fluff on the horizon that doesn't seem to be going anywhere\.
Nine Years.
Saturday, July 18, 2020
Two Old Dogs and The Rainbow Bridge
Monday, March 23, 2020
When the Pool Expands
A steady beating drum....... It's coming. It's coming. It's coming........
It's contained.
It won't get to Eastern Washington
It is just like the flu.
It's a left-wing conspiracy.
It will dissipate in April.
Oh, the quarantined ships, well they are not Americans so they don't count.
Oh, we are screening everyone that comes into the country. We let them arrive after hours in close contact and then we screen....hmmm?
No one can come into the country. Now we don't know if they are positive because we don't have any real testing because this is America. We are immune to all bad things.
Oh, we are ready. I was thinking about ready when I looked up the amount of hospital beds we have in this country. Less than a million.
We are fine. We have this under control.
Spreading
Spreading
Death
Spreading
Now what? We all enter my world.
From the beginning, I was confident I knew how to deal with this. I spent over seven years facing a world full of pathogens. Simple things could kill. Simple things did kill. What you eventually realize is that your mind needs a project to keep from thinking about what is happening to you and yours. I think as a species we need to think we are "doing something". Something. Something to make things better. The need propels us forward and keeps us sane to a certain extent. But where do you start?
Washing your hands.
Using hand sanitizer when no soap and water were available.
Wiping down door handles and other surfaces.
Tasering anyone that sneezes in your direction.
Wipe down places people touch. Door handles, phones, handrails, the outside car handle, the inside car handle. It all is germy. Wash all your hand towels every day. With Bleach. Throw away sponges. Make everyone that comes in the door use your special home-made hand sanitizer. When did alcohol begin to smell so bad?
Essentially what happens is a new awareness. A new appreciation of how many surfaces are lurking out there. A new form of hyper-vigilance. Every moment of every day your adrenaline surges through your body.
You have To bE careful.
You Have to Be careful.
YOu have to be CareFul.
This will be a much cleaner world. It might not be a much friendlier world. But at least wiped down and freshly sanitized.
Wednesday, November 27, 2019
Death and Dying and Why it Sucks
God should know better.
So I have a friend. Her name of Patty. She and I did not find each other in this life until another friend Nancy made us all go to trivia together about 4 years ago. (Rules about Trivia are a whole other story. Love you Nancy.) Patty and I were sisters or brothers or littermates in a former life. We have read the same books, been to the same national parks, like the same foods, and most importantly have the same weird sense of humor. In this life, we have lived in a lot of the same places and had lots of the same experiences. Our fathers were doctors, we lived in Michigan, we have both traveled, love road trips and seeing the world's largest ball of string. I think she was even at the Michigan Women's Festival the year my sister got arrested. (Another long story to be told later.) We have come close on many occasions to having our lives intersect.
Well as fate would have it, we don't get to become better friends because God is not cooperating. She (Not God) has end-stage colon cancer and has decided that spending time with friends and family is more important than sitting with an IV in her arm. I love this about her.
The other day it just hit me how deeply deeply sad I was about our aborted time in this realm. We won't be sitting together in the Barking Dog making fun of the guy that runs the Trivia Night. We won't be able to have a good snicker when all the answers are Teddy Roosevelt. We won't just hang out and share a good glass of wine or beer or watch the hummingbirds. She won't ever be able to spend time in our lovely back yard in Eastern Washington watching birds that flock for good food. She won't be taking great pictures of amazing objects. She won't be readily accessible for witty banter and serious conversations. She won't be around to scoff at my dogs or ever really get to know my co-conspirator. I bet she won't be able to join us on the Mini Road Rally set for this summer.
It just makes me so melancholy.
Patty recently shared a book she wrote about taking care of her mom at the end of her life. More than a book about her mom, it was a book about her. About her life. About the ups and downs of being a daughter, a mother, a wife, and a friend. It was supposed to be about having a failed relationship with her mom. A lot had to do with how she didn't want to be like her mom. After reading it, I don't think I had the chance to tell that I have never found her to be like her mother. I have never found her to be more than open and loving and caring. She is practical and direct and no-nonsense about life. She is a good example of how we grow in our lives and we are not always defined by them.
So while a lot of us write about people after they have become part of the universe we cannot access without a medium, I wanted to front-load my sorrow and grief. I am perched above the Pacific Ocean, watching the waves pound the ancient basalt formations. She is in Hawaii, enjoying time with family. Our views are very different of the same body of water. Her's is warm and sunny. Mine is cold and windy and angry with white caps and crashing waves. Maybe that explains our different states of mind.
As I just watch the tide coming into shore, I just wanted to suggest we spend more time with those we love and cherish. Never let and thing go unsaid. Eat more good pastries and drink good wine. Read good books and remember Theodore Rosevelt is the answer to way more trivia questions than you can imagine.
Monday, November 18, 2019
Really? How Can That Be Remotely Possible
Sunday, November 17, 2019
Post Traumatic Stress Pops up in Weird Ways.
Last night I attended a birthday buddies birthday. She turned 12 years old. While some might see me as a mature person exploring the joys of my mid-60's, I did demand extra cherries on my ice cream and a balloon. It was a lovely evening and great joy can be given to a 12-year-old with a large box of presents. It was a good reminder of how 12 can be a good time. The precursor to the rocky years ahead. The dark flood of hormones, social pressures and the need to dye one's hair the color of a seldom-used off-color in the giant box of crayons.
As I sat there, I realized Mary-Elizabeth was this age when we were trying to figure out what was going on with brain tumors, CT scans, weird blood draws. It was a time we tried to make normal but there was a cloud of doom hanging over everyone in the family. Then to think that childhood ended and Cancer World embraced us with open arms and great enthusiasm creates a knot the size of Jupiter in my gut.
I don't often wonder about how things might have been. I don't often say "Why her?" I don't often go down the "only if" path. I sort of put those thoughts into a different place. A place that collects dust and cobwebs and leftover bits of wrapping paper. It isn't
productive. It seems silly to look back but then there was a plan at one time. It was well set. It was reasonable. It was logical. It was pretty normal. It was busy and hectic and semi-organized. There was work. There was a home. There was a future of some certainty. Events to be attended. Holidays to plan. People to visit. Christmas cards to send out. Lists to be made of things to accomplish.
Oh..... how.....Naive I was. Silly Silly Sally. What was I thinking?
It's so foolish of me. Little did I know.
Well, this moment of reflection will pass. I will re-focus on what I need to do today and tomorrow. I will even imagine making some plans for next year. We will move forward knowing that while the future is never certain, there is at least a near future. That has to be enough. I will have to wait until my next life to have a bright confident accomplished daughter with a joyful laugh that just gets to be a child for as long as she might. I can wait until that next life. You might ask why I am so sure there is a next life. Well, when she was 3 we were driving in the country and she piped up and asked: "Mommy, do you remember when we were cows and I was the Mommy and you were the baby?"
The box of sadness and regrets and lost opportunities is re-packed. It is put deep in the scary basement. It will sit, unopened until the next moment when something brings it bouncing back from its resting place.