Moving Forward and still Staying Connected.

She is off treatment, she is back at school, she is thriving. She even missed a class this week because she slept in... how normal is that?

So there is a part of me that wants to step out from under the Cancer World Cloud and move on. We are done, it is over there is no looking back. Wouldn't that be great. Wouldn't that be a perfect thing to do.  Any sane person would do so.  

But we Cancer Mom's are sort of like holocaust survivors. We might have not been in the camps (our kids were) but we carry the scars with us.  Our kids have the tattoos from radiation but we had to be there with them. We were there, we were trying to keep them alive and keep them sane and keep them safe. 

I want to flee and pretend it did  not happen.  I want to flee and pretend it won't return.  I want to think it is done.  But we all know it is never done.  No matter how far out, no matter what the research says... it is never over.   

Someone shared this little picture.  Sort of a reminder that it is never over. So I guess I have no choice but carry on. Work on a book. Do something great to fill the hole cancer dug in our lives.  We are strong and determined and nothing..... will keep us from doing everything we can with our lives.  Small steps.  Each more normal than the last. 

Hyper Pin Point Focus....

We get so focused...So focused on the goal that sometimes we don't see the big picture. 

 The big picture is there all the time but being in cancer world deletes your ability to see that picture.  You have one set of goals.  It starts out big... Cure Cancer. Cure and defeat Leukemia, AML or ALL or , Brain Tumor, Sarcoma...Wilms, the list is endless.  Cure, Cure, Cure.

Only later do we face the reality of what the cure means.  80% of the time it means life.  Survivorship, a future, a way to return to normal.  I told someone a long time ago I was not giving a dime to anyone that wanted to cure Cancer, only to those that wanted to figure out how it happens and make it stop. 

I sit here this week and look at the fall out from being in Cancer World twice and now it is damage control.  Sort of like the bombs dropped on Nagasaki and Hiroshima.  They stopped World War II but then what.  At what cost to those sitting around innocently having a morning cup of tea?

Mary-Elizabeth and all of our children have been subjected to a nuclear blast. Many cells and organs and future cells and eggs took one for the cause.  Her thyroid died, her eggs are (ready to be served on) toast, she is guaranteed cataracts and skin cancer and a whole list of possible other cancers.  

Don't get me wrong, I would make every single decision the same except I would have pushed for egg harvesting when she was about 17 or 18.  I didn't think about it then and now it is too late. 

We are so singularly focused on a date, a place, an event, a result.  Please let my child's body be ready for more Chemo. Please let my child's body be able to 4 days of twice a day total body radiation and high dose chemo so that she will be completely helpless against any sort of bug!  Please let them do some more scans or run a scope down into her stomach and take a biopsy.  Please let them operate and remove huge parts of her bones and replace them with some foreign metal in a new experimental surgery.  Please, we will take anything, just let her live...

If we ever stood back and took a look at what was really happening and thought about it, I don't know what would be the result.   I guess our brains know we can't handle too much.  So we are able to chop up the ongoing crisis in little bits and pieces to be handled one step at a time.  Today we do the biopsy or the scan or the chemo... Tomorrow we evaluate and keep going until we hit CURE.  We will take the dead thyroid, the deeply upset kidneys, the brain die-off the massive infection that will not heal, the relapse, the 14 days in ICU, the emotional storm of anxiety and depression and all the rest.    

We are focused on a Cure.  Nothing more, nothing less. 

    

Maybe today we are able to continue the Taper

So we are at the point where things are really stable and have been for quite awhile.  Little GVH skin flairs every now and then. Some GVH in the scalp, but over all good. 

She has been on steroids, sometimes really really high doses for more than two years. Gut issues, skin issues.  Blood clots, Kidney stuff, Dead bone in leg issues. The usual, unsexy sort of stuff. 

But today we meet with Dr. Carpenter our lovely handsome kangaroo eating doc and I am putting my foot down.  We are done with cancer and post transplant crap.  I have not decided what to take him as a bribe but I will think of something.  Maybe something from the Spam Museum...

So while I have not had a tone of anxiety about this appointment, it has been sitting on my shoulder being irritating.  Today I intend to kill it...

Update at 11

Just one of the many curves in the road we have traveled. 

Eagle Sighting

WE are bird watchers.  Binoculars, feeding, listing making, discussions,  Come Look.... It is the story of my life.  We are observers. We were trained to see things other people don't. 

In fact after I took the MMPI (some sort of test established to figure out if you are sane) during law school, I was called in and asked about some of my answers.  I had answered yes to the question:  Do you see things other people don't?  I answered yes.  I do see things other people don't.  I am more observant and aware.    A gift and a curse.  

I see pain and suffering in odd places.  It does not leave me. I read between the lines, I observe the silence and lack of communication as a sort of communication. I don't see dead people but I see very sad and hurting people.  It was the best and the worst of my lawyer time.  I wanted to help. I want to make it better. Many things can't ever be made better. 

MEB is doing great. But she is deeply deeply scarred and will carry those within her being forever.  Many are not visible. They are there.  Sometimes they rear their ugly head in odd ways. Panic over bad grades, worry about when a check will clear, avoiding new things.  Now lots of these are very normal stuff.  Hers has a bit of unusual intensity. It makes me worry but then I don't think there will ever be an end to the worry.  

We went to a special birthday party yesterday and went for a walk looking for a beach path.  She would not enter the wooded area even though it was raining and dry under the branches.  She fears the woods because of the fungus, the mold the stuff in those areas.  No amount of coaxing would work.  Instead, I left the dry and we walked up a pretty impressive hill.  5 flights on the Fitbit. 

 During the walk we were looking up and down and out on the water. Then it was spotted, the large mass of dense sticks tucked in the top third of a Douglas fir.  We had seen a couple of mature Bald Eagles flying around and now we knew why.  A moment of quiet observation of a good thing.  The sort of observation makes you think about things grander and more mysterious. A special moment of wonder.

Then there is the really frustrating bit of observation. A new bird, a flash of yellow, serious concentration on the small black and yellow being searching for food.  But sometimes even with the most astute observation can be thwarted.  Somethings are so very difficult.  One of these visited. I will never probably know which one it was.  It just was one of them.

One thing I have learned is that a flash of observation sometimes has to be enough.  We seldom really ever know the answer.  

Plan Execution: Begin

We meet today at 3:00 p.m. with Dr. Chappie the "guy" that likes to drill on children.  I figured it would take at least a week to be scheduled but the gods are with us.... I hope.

 

This is a diagram of Hell.  I can't figure out where I am right now but somewhere in the miserable middle.

I am having compost being delivered to distract me.   4 yards... I need to be really distracted...

Here is My Plan.

See Chappy (guy that likes to drill holes in children) before the month ends. Make it very clear that she needs to return to school this fall come hell or high water.

Schedule surgery by Mid-May.  Keep doing the Pred taper and resist the urge to go too quickly.
(Prednison is the cause).

Figure out what to do with all my new garden space cleared by little Asian garden guy.

Finish Blood Sucking Fiends. Do laundry. Take a shower. Order those really beautiful begonias from Brecks.  No specific order designated.

Beware the Ides of March.......

Wish I had taken time to kill that special chicken and read it's entrails!!! I was not prepared for the Ides of March and neither was Mary-E....


Good news no AVN in the joints.  It is in the shin bone.  Rare and unusual place for it to be.... Of course.
Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.

Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN. Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body's ability to break down fatty substances. These substances collect in the blood vessels -- making them narrower -- and reduce the amount of blood to the bone.Great.  Damn it.... Damn it.... Damn it....  I had this.  Next step upper body MRI to see if there are any more surprises.  Meet with the only guy on the West Coast that will touch a Bone Marrow Patient.  They will remove the damaged part and then drill into the bone to make it grow more and then I am jumping off a bridge.

It is so bad I have agreed to travel to Wisconsin and help my sister and sister-in-law relocate to Albuquerque New Mexico in the summer.

Etu Brute......Did you ever notice this was the only phrase in Latin in the Bard's play?