The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place. It just isn't. No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.
I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year. Does my writing help anyone? Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey? Cancer World is simply a grind. An endless plodding grind.
One with an ambiguous ending.
People want happy endings, evidence of great triumph over adversity and life-affirming stories. The grim reality of Cancer World is there are no happy endings. Many many children die long horrible deaths. Some receive reprieves and believe they are done. Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo." No Hallmark card fits any of these situations. Very few children ever hear the words "Cure." They are told they continue to be "NED."
No
Evidence of
Disease
Many are told they are in "Remission" This is not a word that warms the cockles of our hearts. Simply a reprieve. Some are short, some are endless. We all live with the fact next word we will hear is "Relapse or Recurrence." We know cancer comes back with a vengeance. There is no way out. We are here for perpetuity.
Mary-Elizabeth is currently doing great. She seems to have settled into her little universe of side-effects. She handles the GVHD. She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA. She is hyper aware of any changes in her body. A bump, a sneeze, a strange feeling of concern. She addresses each of them. I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting.
Others have not been so lucky. We have met so many people over the years and know many many families that have come to the end of the road. They simply take their children home to die.
These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post. They put their best face forward and try to have something happy to say.
They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming. The sand is rapidly escaping the hourglass, and there is no way to stop gravity. The entire process is just overwhelming and excruciating.
Time does not heal the wound of losing a child. The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever. Life does not get easier, nor does the pain lessen.
The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know. We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.
I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months. There had been so many losses of such lovely children. Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.
I don't keep count anymore. I cringe every time someone celebrates the last dose of Chemo or the end of treatment. I just hold my breath for them. I know too much.
We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo. What the Hell!? She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much. I think we are all just waiting.
I certainly am.
For reasons unknown, I have not been able to make myself go to Children's Hospital with Wishing Rock Bags. I have them packed, I have sorted, I have great new People Magazines, but I have not been able to go. I plan it and then when it is time to leave, I take to my bed to watch Keeping Up With the Kardashians. Yes, it is bad. It can be very very bad.
I had a million and one reasons for not going. I was tired, I might have the bubonic plague, there is a terror alert, and I am on the top of the list. They won't let me in. The Seattle Guild Society was right, these silly little bags are meaningless.
Then I had to go. I made myself go. I told someone I was going. I had to do it. And I did.
I went. And I remembered why I do this. I let someone tell me their story. I listened to them, told them hospital survival secrets and let them know about Midnight Bacon.
Something about the act of giving back and listening and just being there is so potent. We don't even have to know each other's names we just know. We know the deep-seated fear, the questioning of everything that might have caused the issue. The wondering "WHY" no one found it earlier. The realization that no matter what you do or what you let them do to your children, it might not be enough. It might not work. It does not work sometimes. It might come back. The treatment might bring more cancer and an endless list of long-term side effects. Knowing the fear never goes away. Knowing the future is something other's can focus upon because we have just this moment in time.
Life is so much more than what we had planned and more about what we can do this moment. It's okay to watch your friend's lives continue. Plans being made. It is part of your stepping off the path.
When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt. There was required path, and you were only to kill the appointed Dinosaur. It had been determined it would die soon and not affect the timeline. This man stepped off the path and upon return he found a small glistening blue butterfly on his boot. When the doors opened to return him after the hunt,
everything seemed familiar but were slightly off. It was not the same. It is never going to be the same. No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.
The only thing we can do is help those behind us.
So.... I will consider myself cured of the plague, be kind to security and keep at it. Besides, I'm almost caught up with the Kardashians.
"There are no Answers only Arguments"
Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983. One of the OCD CPA's that decided adding a JD to his name would be easy. He wanted answers, he wanted certainty. He was in the wrong world.
Law is about change, pushing the envelope, finding new inroads to old systems. It is about the creative expanding the boundaries of the old set rules. Many things we take for granted were taboo and forbidden many many years ago. Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it.
Medicine is very like law. Always learning, always changing, always developing. Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood. Yes, we have come a long way but we still don't have all the answers.
Childhood Cancer is a huge amorphous amoeba. Every single person I have ever encountered has a Diagnosis Story.
We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.
They did not find it until________ months later.
Common story. Horrible stories. Great fear that if they had found it earlier something could have been avoided. We know that if you catch the cold early the pneumonia won't come. Wish that was the case with childhood cancers.
Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early. It is sort of like being pregnant. You are or you are not...
There are so many times during this process that no answers are readily available. Very few tests/scans/examinations or other woowoo magic give you the answer. Most likely it is a process of elimination.
Meb's sort of went like this.
Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor
Oh, leukemia. (second blood draw 2 months later in anticipation of biopsy of mass.
For years, yes years, Mary-E has had her blood cultured. Only once has there been a positive. They were used to exclude fungus, bacteria, lots of nasty things. Only after something grows do they investigate further. It is a long process and there are no answers, no easy answers. It is not TV medicine.
We all want the easy answer. Actually we would take any answer. Even if it is a bad answer because the not knowing the answer is crazy making. Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there. The mom's waiting, wondering and hoping for a good outcome but we know. We know better. We know it is bad.
But then we think "It could be worse". I remember sitting and waiting to see the brain surgeon at Seattle Children's. We sat near the Hem/Onc desk and I watched the small bald headed children being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors. Boy was I wrong...
But we did finally get an answer. We knew what the problem was and had a plan. A way forward. It was a good thing.
Knowing is always better than no knowing. After you know you feel like you have SOME control over what is going to happen. It is a good thing. Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.
Sometimes knowing has to be enough.
Sometimes there has to be some distance between the event and the reflection to make some sense and have some perspective. When we are in the heat of the moment, we can only do so much and take in so much.
I thought I was pretty much on top of everything until I went to a survivorship conference. They are all sort of the same. Cancer World people. Inspirational speaker: I had cancer and I made it and I don't have any problems. (Denial is a great coping mechanism.)
When you enter cancer world it is all about survival. What percentage of kids with this kind of cancer "Survive". I totally understand the need to be so focused but the longer you are around, the more you realize that percentage is only a tip, the very very tippy top of the iceberg of information.
It is so so complicated and each kid is different. There are things they don't want to talk to us about or they mentions in passing. As we are going down the road, we find out about them. I can remember when I sat there and heard someone that had treated Mary-E explain that Spinal/Cranial radiation continued to damage their bodies for 3-5 years. That is a long time in a child age 12.
I could not believe I had missed that little fact but went back to this blog and sure enough, there it was. Clear as day. In my inane babbling about heavy doors shutting, eating and sleeping problems, I had missed an important fact. These life saving doses of radiation were taking away her brain and thyroid and God only knows what else. For 3 to 5 years.
But... do we not follow the protocol. The time tested method of trying to beat this thing. Probably we do what we can to help her live.
It is only later, in the aftermath and years later do we try to second guess ourselves.
Should I have done this.....?
Could things have been better if I had done this........?
What would have been the result if we had tried....?
I remember be terrified to know we were going to miss a round of some chemo. How do we make it up? Will it come back if we don't do more?
How do we know if it is really all gone?
We walk out of clinic for the last time. We note the last bit of Chemo. We celebrate the end of treatment, we go on a Make-a-Wish trip.
We close our minds to all the doubts that sit in the background. The stirrings of worry. The little bits of dreams that are unsettling. We do our best to ignore it. We want to believe that if we do all the right things and say all the right prayers and banish Spam and other processed foods from the diet, things will be okay.
Charles Hemenway, MD, PhD. clearly is not a tuned in pediatric oncologist. He has not seen his patients go through treatment, relapse, try again, relapse, try to find a last ditch drug and study and then watch long slow downward drain of the life that came into the world with so so much promise.
There is a 70% cure rate. There is a 30% death rate... The kids endure with grace and courage massive treatment and pain and suffering.
We fear we will be part of the 30% or the 60% or the 95% of children that die. We hear the odds, we play the odds but we all know we have no way to change the odds, no matter what we do or how hard we try.
http://www.healio.com/hematology-oncology/pediatric-oncology/news/online/%7B476b729a-d317-4f7c-8266-d9d76338dac9%7D/new-movie-portrays-teen-cancer-unrealistically-expert-says
No wants to think about the downside of all of this but it is real. It is there and happens.
So conscious fraud and trenchery.... interesting if you think about it. The other levels are a myriad of bad human behavior like murder but deep in hell and in Dante's mind this was worse.
Bolgia 1:
Panderers and seducers march in separate lines in opposite directions, whipped by demons Just as the panderers and seducers used the passions of others to drive them to do their bidding, they are themselves driven by demons to march for all eternity.
Pandering: is the act of expressing one's views in accordance with the likes of a group to which one is attempting to appeal.
In cancer world we really don't get much of this, at least at Seattle Children's. We do see the adds for places that are almost guaranteeing a cure but they must have anti-pandering classes all the time for everyone. As parents we have a list of stuff we want to hear. We want to hear only about unicorns and rainbows and that there was a mistake and it is all over.
We do a fair amount of "Self-Pandering" . We often don't want to hear the truth and we do what we can to make sure we only hear the things we want to hear. She will be okay, she will have a long full life, she will be able to have children because 1% is really good.
Maybe there was a special level in Hell for panderers because as a group, we fall so easily for the good news.
Seduction is the process of deliberately enticing a person, to lead astray, as from duty, rectitude, or the like; to corrupt.
I read this and laughed a bit inside. Oh are we easily seduced as a group. Just watch 2 minutes of commercials. Creams and pills and instant weight loss.
Our biggest fault is if we just follow the rules, inject poison and death ray our children, it will all be okay. Maybe just one more round, one more poison. Maybe if we just give it time, maybe if.....
We are all seduced into thinking it is going to be okay. Sometimes it is not.
I don't think there is any harm in hope and I believe in Unicorns
.JPG)
