Blog Archive

Thursday, September 26, 2013

More Struggles. Tranplant is so hard.

 
 
yes, yes that's disgusting  grey things :(
i told them today please change it but they said that "no, because this is the best and now you have a GVHD, if we change it, we cant handle with the GVHD :( " so unfortunatly i have to take them..
my kidneys are not very good nowadays creatinine is getting high day by day.. i just worried about this.. 

i wonder that why Mary-E still get immunosupresents? my docs told me that totaly 180 days you will get them.. 
and i have one more question my hairs still not come :( anything... it's nearly the 60. day but nothing.. is the immunosupresents can cause this?


  

17 Mar 2013 tarihinde 20:17 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:

There is a medicine they gave Mary-E that was big and gray and smelled like fish?  Is that it?  She only took it for a few weeks in the hospital and then they changed her to Tacrolimus.  She is now on Siroliumus.  You should ask for other options.  They don't want you to be sick.  The other thing is that she is still taking her immunosupresents with no end in sight. 
 
Glad you are home... Feel better.
 


From: Gülenay Gürbüz <gulenaygurbuz@gmail.com>
To: sally lanham <quilting_goddess@yahoo.com>
Sent: Sunday, March 17, 2013 10:18 AM
Subject: hi there again,

i think you are busy nowadays, :) i hope there is a good news..
i have a question;  during the 180 days i have to take sandimmun -neoral- medicine, (of course i have more and more medicines but the most important is that one they said)
was Mary-E also got the same medicine, and if the answer yes how could she overcome, beause i cant swallaw it especially is the smell is killing me my god.. sonetimes when i try to swallow i vomit all the things :(
is there any easy way that you can show me..
:/
FROM Gülenay Gürbüz TO You
Show Details
 
hi Sally, 
i asked the doc. today but he told me that we cant change the protocol :/
min. 180 days this immunsupresant gonna be with me.. and also there is a lots of pills.. because of bacterias, because of viral things because of fungal things because of kidney becasue of heart, nearly 20 pills in a day, oh dear and lots of them gonna take 1 year he told me... said that "be friend with your medicines" i'm so sad.. because i hate to take them... 
i cant walk yet, i'm not strong enough to walk, just layin down as a flowerpot.. 
i miss my own house, my husband, my life.. but i understand that, it never be the same again 😔
how is Mary-E handle with it? what is she doing? is she at home always? and school? you didnt tell me anything about her social life..

  

19 Mar 2013 tarihinde 06:45 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:
 
Here is a link the doctor should be able to access.  This is from 2007 when they were just starting to do these transplants.  There is a much better result now because they have learned so much.  When Mary-E was first diagnosed there were not cord blood transplants. 
From

 

March 20, 2013
 
 
dear Sally
i haven't got any card yet :( i'm gonna give you my mothers address, as you know i'm at home but i have some IV so all of them takes 8-9 hours nearly.. so i have to lay down always... just going to wc.. thats it.. spring is coming, everybody at the outside.. sun is shinig and my today is lost.. i'm just living in the future ( its gonna be bla bla bla, i'll do bla bla bla) or living in the memories.. ( me and my husband were bla bla bla...my mother made a bla bla bla...) no today.. today bed, today iv, today medicine, today blood check etc.. pufh 😕 i guess i depressed..
how are you? how is Mary-E ? how is wheather? and also your psychology? i have to find something to do myself. learning a new language or musical stuff can be.. because i dont like tv and facebook to much.. time not passing with them.. if you have got any good idea please give me advice..
  

26 Mar 2013 tarihinde 16:55 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:
Okay this is the very hard part of this.  Every day you need to get up and walk one more step each time.  This is a very hard time.  Hope you are feeling better.  Did you ever get our card?  I have another to send you.  I need you Mom's address.




 



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Monday, September 23, 2013

Early March for Gulianey


March 5 2013
they saw only monocites on peripheral blood smear. just monocites.. no neutrophils or anything else... 
and my ferritine too high, very very high.. i'm scaring sally, really scaring..

 Okay those cells are okay and so is ferritin Mary Elizabeth had it really high. They make you give the blood back.  ME had to give blood every month.  No beef no high iron food no vitamins with iron.   Sorry you are scared. It is okay.   

 
I spoke with one of our doctors today and he assured me that as long as the cells were not leukemia, then your new cells would take care of your old cells.  It is okay if they float around.  They can help out while they last.  Hope you are okay......
 
March 11, 2013
hi sally how are you?
i'm very well, because my numbers are normal now, just ferritine high, and new infection appear (e.coli). and the GVHD grade1 started.. so the doc. gives me prednol(steroid)..
now i'm at my mothers home i got my iV and the medicines at home, so thats better :) and the new MC result is 99.4 so everything is going good.. i hope that will be continiue like this.
how is Mary-E?






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Sunday, September 22, 2013

The child has a cold.

She is hunkered down. Lots of soup.  A new inhaler and spacer ($50.00), lots of help from John Carden with Grocery shopping medicine pick-ups.  Now we wait.  Does it pass, does it become a hurricane, does it miss her and become a tropical storm.  We wait.

She is stronger and further out.  Her prednisone is dropping and she really has another life to get on with... (Two prepositions, bad Sally.) It is going to be fine.

Woke up this morning to big wind. I am sure the Cascades will protect my daughter .  I am going to church and light a bunch of candles.  Maybe God and the saints will protect my daughter.  I am planting 300 daffodils today, maybe Dad will protect my daughter. 

Pearl Anne and Ellie Mae... they need to make sure they protect her.  Go Girls.

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Friday, September 20, 2013

Back on Land

The beauty of going on a ship is that for a couple of days after you are off, the ship stays with you.  Deep in your inner being.  You can feel the gentle ever present rocking.  If you close your eyes and just sit you can be back on the ship. PCS, Post Cruise Syndrome.

So I sit, look out my window and inspect what has happened during my time away. Really nothing.  Not much. Not enough to worry about.  Eyes closed.  More gentle swaying, the sort of sway we use to settle a crying baby.  Back, and forth.

Being away is a lesson in how much our trying to control the world does not work.  It is not possible.  The world keeps ticking as we step back to give it the test. 

I met some really fun and interesting people.  Watched a man be taken off the ship late at night on a helicopter, ate lovely food and marveled at how the expertise of the Chef in food recycling.  I had duck one night and it showed up in the gumbo the next night. 

But what I really did was have time to sit and stare at the ocean.  I am always amazed at how vast and grand the ocean can be.  It really puts lots into perspective. In the grand scheme of things, we are so so minuscule.  so insignificant yet such a grand thing.  I have to spend time at the ocean more.  I am going to work at spending some more time at the ocean, or the water.  More time at the beach.  Salt water.  A good thing.

Well  I am going to rock a bit more. Walk my dogs, pick up a few things, do a load of laundry.  In that order.

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Monday, September 16, 2013

I am trying to figure out how hard it would be to

Stay on board until Florida? 
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Friday, September 13, 2013

Yesterday and Being Far Away From Spokane.

It all turned out just fine.  Simple blood draw, swollen leg, ultra sound, no blood clot.

Seems simple now, but the amount of emotional sediment it dredged up would concern anyone.  It built over time, and clouded the world.  A grade 14 sand storm.  Not just a little bit but a lot.


I tried really hard to not get upset.  I kept busy, I followed the progress of the process. I stayed close to the phone for the results.  It was nothing, it was a small swollen leg.  A hot weather Sirulimus side effect sort of swollen leg.  SHE IS FINE.

No amount of ice cream helped. No amount of Mad Men helped. (I did wear pearls today with jeans.) It just kept roiling and finally I sat down, and just let it batter me around. 

Every little stupid things can become a Tsunami.  I really nasty, blow the world away Tsunami.  Okay.  This is not one of those situations.  It is simply not.  but......  I am realizing it will take me longer to trust the world again. 

But it is not all that bad.  Housekeeper Friday.  Plans are all ready for my retreat.  I am going to indulge my love of the ocean and water for a few days.  No dogs, no kids, no worries.  I am dropping the electronic wall and recharging my batteries.  I am going to build up some reserve. I thought I had some but boy did "Mom I have a swollen leg"  get me going.

I have to remember to breath a bit and maybe smile.  Last night we went to Dicks for a Sunday.   Margaret and Michelle and I went to "watch crazy people".  Warm night.  Thursday, no rain.  Guaranteed entertainment. We waited and watched and observed.  Old farts really really need to cut their hair.  Pants that hang to the ground are not cute on 35 year old guys.  No one looks good in sweats if they can be Santa without a pillow. 

Then it began to happen.  Bicyclist started to arrive.  One, then two then 12.  Pretty soon there were 50+.  Not your normal, anorexic tight pants, 27 ass flasher type.  These guys and a few women were all sizes, in dresses, drinking beer. I finally got out of the car and asked what was going on.  Margaret and Michelle hid in the car. 

Answer:  We ride bikes on Thursday nights.  Why? Because we like to ride and it is a great thing to do.  Every night we have a different route and a different goal.  Tonight we are going to as many Dick's as we can in 4 hours.
This is our 3rd.  We are probably going to go to Lake City, already been to Capital Hill, Wallingford and now Ballard.  Sometimes we do Pubs or parks or museums.  It's something we like to do.

Only in Seattle. 
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Early March for our Turkish friend.

Let me know when it gets there.  Hope you are doing okay... If I recall M-E had trouble with the BK virus for a couple of weeks.  Hope your numbers are coming along.... About this time M-E was receiving two and three bags of platelets a day.  It was not a great time.
 
Feel better or know you will feel better.
 
Sal
 
of course i'm gonna let you know that.
finally no blood and no pain, as you said they gave me 2 bags of plattelet every day. but now i'm ok. cure for bk virus is still continue, it takes 4 weeks. but my numbers are increasing white blood cells 0,67 and neutrophils 0,16 
i'm exuviating, especially my face.. some parts are light some part are dark.. i love M-E's photo she is really beautiful, does she look like you? and i like your dog but i'm a cat person :)
my doc also give me a immunglobulin every week 35 gr. because i'm 70 kg :) i know it is nearly 1400 usd (for 10 gr) in turkey,  thanks to god, government paying



this is my snow-woman :) last year when i was in remission i made it in my own houses balcony :)
this winter is passing in my hospital room.. but the spring gonna be fine..
 

Love the snow man.  I bet it snows there more than here...  Short note, I have to go do somethings today but I am glad you are better.... The skin gets better.  Good cream and oil no lotion..... that is the trick.


i'm not neutropenic anymore :) and the Mc test results: engraftment is %80-%90 okey..
 but i dont know that is that have to be %100 ? is %80 - %90 a good rate? i'm excited.. 
still have Bk virus :( and vomiting.. maybe when this problems end they let me go to home :)  it has been 2 months that i'm here.. 




So glad.  When we did go home we had to be at the clinic many many times a week.  You should ask them what the other % is if not new cells from your donor.  You will get to 100% at some point. I did mail the letter last week so let me know when or if it arrives....
Hang in there.  the more you walk, the more you drink the more you eat the faster you escape the hospital!!! Good Job


nothing arrived yet :( 
rest of the cells are my own cells, so is this bad ? 


They want you to be 100% your donor. .... I will ask what they do.... in those situation. 
 
Something will arrive soon, I hope.















 
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Wednesday, September 11, 2013

Moments of sunshine

Lots of early mornings are spent here during a normal summer.  It is especially grand after the vines fill in.  I am going to enjoy this time.  The time I have here and now.  
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Gulenay's 24th day of Transplant

 
 
February 12
 
hi again,
today is the 24th day of transplant, i feel better, some of medicines stopped.. but there is still no news about engraftment.. and there is no sign about GVHD.. the docs said that GVHD grade 1 is good, but no sign on me.. i'm afraid that all the things can be in vain.. my skin is very bad, especilly my face is very very dry.. i'm using creams but still dry.. 
how is life in Seattle? what are you doing in a day? you have any more children? 

my name and surname: 
Gulenay Elmaci

address of hospital:
Erciyes Universitesi Sahinur Dedeman Kit Hastanesi  Kat:2  Talas / Kayseri 
Turkey 
zip code: 38039

probably the man who bring the cargo can't enter the service because nobody can come inside (hgyen and desenfection is very important) so maybe you should tell them they can give the pack nurses instead of me :) 

image.jpeg

this is the Erciyes mountain, one of the highest mountain of the Turkey nearly 4 km high and it is here i mean in Kayseri. i can see it from my room in nights  -because morning time jalouise is always closed for protecting me from the day light-
of course seaview would be better but this is also not bad ;)
loves.. ❤
 
 
February 15
so what are your numbers.  Reds, Platelets and Neutrophils... No GVH showed up for awhile with Mary-Elizabeth. YOur dry skin might be part of it. Lots and lots of cream...... and then some more cream.  And then you have to put on more cream.
 
We will start with a card.... make it simple. 
 
Mary-Elizabeth is my only child.  I was a lawyer but took some time off and have decided to do some work in another area of employment law. 
 
When I think of it, none of the cord blood kids had GVH in the hospital.  It took awhile for it to show up.  The docs love it. 
 
Mary-E had signs of white blood cells on day 18 for the first time.  I think it took a couple more weeks for her to have 2500 neutrophils two days in a row which is the real definition of engraftment.
 
Hang in there... Love the mountain picture...
 
February 15, 2013
 
 
hi there, 
thats the blood count

 

there is a problem now, thats the reason why i coudnt write you.. i have pain and pain.. A virus appear, name is "BK Virus" now we re struggle with it :(

did you hear anythng about this virus?

i'm so unhappy and painful :.(
 
 
 
 
 
 
 

 
 
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Tuesday, September 10, 2013

Two Sides to Every Story

He hates my cooking, he threw the lasagna pan out of the door.

She never, ever cleans up.  I was so disgusted the other day that after finding maggots in the lasagna pan, I threw it out of the house.  Can you believe it.

True, True, True event.  

So when every one talks about my nest being empty, I just don't see it that way.  I knew from the moment I was pregnant, that I was just the intermediadry.  My job was to  grow this child, raise this child, launch this child. 

She is launched again.  I don't really feel this deep ache or emptiness, I feel a lightness that comes from space clearing out.  I have these moments of freedom and realizations of time.  A place for some writing, and cleaning, and digging deeply into the part of the house that have been neglected.  Some sewing and some time on the phone.  I can finish some things that have been shoved aside.

Don't get me wrong, I love my child.  I miss her grumpy face at 11:00 am when she walks out of her room complaining of the dogs barking.  I miss her dry wit and her strength and fortitude.  I miss the moments when she snuggles in and just sighs in the way a child can do.  I miss her refusal to scratch my back and her demand for Thai food at the oddest times. 

I also rejoice in her independence. Her ability to keep all the balls in the air.  The way she has been able to step back into her real life.  The life of a 21 year old young woman that is noticing the boys notice her.  I would never, ever want to hold her back.  I never was one of those Mom's.  I love my daughter and know she is safe and happy and troubled and struggling and make decisions without me.  And that is the way it should be right now. 


Empty is a two sided coin.

I am looking at the bright and shiny part.
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Days in February. Questions, no Answers. Just Waiting.

 
 February 9, 2013
 
 
Okay.... so they put different units of cells in your body.  If they had done a special blood test at day 7 they would have been able to identify your remaining cells, and the two babie's cells. At day 14 it would have been just the babies.  At day 21 only one set of cells should be there.  One of set fades away and one become your new marrow.  They have found that if they use two sets, engraftment happens faster.  How many of these transplants have they done? the Double cord? 
 
You will know when they are working because your mouth will start to feel better.  Love the picture of the cats.  It will be over soon.... This is the water we have here that is only water and some natural flavoring...
 
 
unfortunatly i'm the 4th person in this clinic -i mean double cord blood tranfer- but in our country there is no experience about that.. the doctor who is living in israil was recommended my transfer protocol.. my own doc. consulted him.. and i don't think that they made this special tests..
 
and also there is no flavoured water in markets :)) there is lots of brands of water but just still water.. i started to eat a little.. 
do you have any idea about if the engrafment not happen?

image.png
 he is my husband.. we got married just before 2 days ago of the relaps :( this photo taken this agust in my first remission.. now he is in İstanbul (has to   work) and me at Kayseri.. 
i miss him so much..
 
 
February 10, 2013
 
Okay, you are engrafting, I can tell because you are eating.  When you see the doctor again, ask him what your Monocite numbers are.. They are a kind of white blood cell that they can count before they can count the neutrophils. 
 
So I have seen lots of different kinds of results of a double cord blood.  I think a lot depends on who healthy you were before relapse.  I love your picture and can see that you looked great and I am sure felt great. 
 
One young man still has both sets of cells in his body.  Both engrafted.  They were going to do another transplant but decided to wait and see.  He has gone home and seems to be doing fine for now. 
Some have engrafted really fast but did not live a year becasue they were so sick before the transplant. 
 
I have not seen anyone where they did not engraft.  42 days is the number they used to use when people were only given one unit of cord blood instead of two.  They have not done very many of these transplants in Seattle. We were number 60.  But they are very sucessful. 
 
Hang in there. Eat, Drink and maybe when you are done, you can start a company that makes the good infused water.  
 
If you send me the hospital address, we will use that...
 
Take care sweetie
 


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Monday, September 09, 2013

The Process Continues.

 
February 4, 2013
 
 
Sun is shining.  Sending you sunshine....
Hope it helps. You will make it through this..... You really really will.
 
today's picture comes from a really great river in Idaho.  I was born here.
 
SALLy

 
Dear Sally, i love the place where you were born. Fantastic! 

Doc. said that they saw young neutrofils..  today:
wbc: 0,1
neu: 0,05

but i still vomiting and cant eat anything.. thats the reason why i'm so tired.. and my colour is changing.. getting dark and dark.. :( i'm very ugly now, i cant recognize myself in the mirror.. :(


this is my mum, i love her.. all my war is just for her, i cant even think that she will cry..
February 5, 2013 Day 17

 
 


Day 18/19 February 6

 
When those baby cells grow up they do a great job.  They are already working on making you better.  Did you name your cell?  We had Ellie Mae and Pearl Ann.  Pearl Ann was the winner.  You have made some very important steps... try a bit of drinking every day...just a sip.  Loved the picture of your mom. This is a needlepoint I am workin on. There are six, they are called creation.  I thought I would be done by her first BMT birthday.  I think creation took much longer.  This is number 3.
 
We need your mailing address, I have something for you.
 
Love Sally and Mary-Elizabeth.
 
 
 
this handmade is wonderful, it seems very difficult to make it.
i didn't give a name :( but i can :)
you wrote that "Pearl Ann was the winner". winner of what? i coudn't get.
i feel better today but my baby cells still not moving.. doc said that: engraftment can take 40 days.. it is so long :( i hope as soon as possible they start to work on my body..
you wanna mail address but there is nobody at home now :( if it wont be problem i can send it
 
image.jpeg
here is my best friends cats :))) they are so funny 😊😊
 
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Sunday, September 08, 2013

Guliany, part Two


January 12, 2013

 yes mine is Aml and its relaps after 6 months : / i'm sending photos of me to you

before and after :))

 


 
 

that one is just 2 days ago the relaps , taken at the marriage ceromony.. during the cure i was gettin fat and fat :/ 

 

don't take anything they don't give you.  Even the most simple supplement can cause problems with the medication.  Mary-Elizabeth had ALL and then relapsed after 5 years so that is why she had to have a bone marrow transplant. 

 

I will scan the documents and try and send them later today.  I am pretty certain that you will find we have the same sort of lists of stuff to eat and not eat. 

 

It is hard at first but there are no other choices.  If you have  AML you get a transplant. 

Sorry you have fungus.  It makes the doctors crazy.   It takes along time to get rid of it.  Sleep is your best friend.  Your body heals when you sleep.

 January 25,
Wondering how you are doing, knowing it is tough.  Yesterday was the first anniversary of Mary-E's transplant. Her cells have been in her body for one year.  Wish they were happier.  We are hoping they will settle down.  She has GVHD but you will face that later.  A little is a good thing.  Many miles and days and weeks but please know, it goes by quickly.  Keep at it.  

 

January 27 

happy b'day!!  ❤❤ 🎂🎂❤❤

i hope her b'day was perfect, u wrote that u do something special.. how it was?

i answered late cause it's not going easy... today is the +9 and i have fever
they re using steroids for stop the fever..
alsa i have a throat problem there is a wound so i cant swallow anything even if my own saliva...
vomiting is an other problem.. so tired.. so tired.. i dont know what to do..

, 2013

 
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Gulenay.... Part One


December 31, 2012

> Hi there,
> my name is gulenay  i'm from Turkish Republic, and i'm a 24 years old girl who has a lukemia (aml m5)
> i found you from your blog.. and i'm gonna have double umbilical cord blood transplantation.. and i'm scaring.. what shoul i do? what u recommend us? help us pls
>

 

It takes a long time but it works.  So when do you have the transplant?  I would be glad to help any way I can.   

 

When is your transplant and who is your caregiver.  One thing I know is you will not remember a Lot.  I have a friend with Turkish family. We would be glad to answer your questions

 

 

Tuesday, January 1, 2013 7:00 PM



Just checking in.  Double cord kids have a very different set of complications.  Mary Elizabeth is back in the hospital.  She had her transplant about a year ago. This is her first illness and is pretty sick but no one is too worried.  I have never seen anyone not graft.  One boy had both of the cells stick around.  He is doing fine. 

January 12, 2012

Hey Gulenay.... I hope things are going well.  I have not heard from you but I know how sick you can be during this process.  Keep trying to drink, no matter how much it hurts and even a bite of food if you can manage will help in a long run.  Mary-Elizabeth drink water with some mint in it.  I bet someone could take some fresh mint, let it sit in water for awhile and then try it.  I think it is better if everything is room temprature.  Hang in there.  It will be better. 

 

I am sure you will write when you can.  You are in our thoughts and prayers.

 

hi there!

today is the first day of chemo. i mean -7. 19th of this minth is the certain transplant date.. i was a little bit busy so i forgat to write you.. they send me other parts of hospital (nose ear trouht, eye, teeth, lung etc..) for control to before transplant..

tey gave me a paper today and and somr boring things writing on it.

example: during the 1 year after transplant dont go crowded places such as shopping centers, never eat outside don't eat the goods whic are close to soil such as mushrooms and greenness etc.. etc..

is that rules really very important?

there is no problem about nutrition now. i drink nearly 3 litters of water every day and eat everything (i mean allowed by the doc.)

how is your doughter? and. and i really wonder that how old is she?

 

 

Oh, Honey, very important rules.  Your body will not have any way to fight simple things.  Mary-Elizabeth is 20 and she just spent 10 days back in the hospital for influenza.  You can eat most everything except it all has be be washed and cooked.  Salad is okay be it has to be washed before it is eaten.  What they are most worried about is Fungus.  It is the hardest to treat.  We did eat out but were really careful about where and asked lots of questions.  We at good places.  In 8 days you will be a newborn baby.  Never having experienced any of the bugs in the world. 

 

Just a hint. When you get the transplant, have some oranges and lemons in your room and have people squeeze the peel.  There is a preservative  in the cells and as they are infused into your body, there is a smell kind of corn soup.  Not awful but having some oranges around  helps.   

 

Good luck and keep in touch.  I know there are times you wont be able to do so but we are thinking about you.  

 

i have fungus now in my lung :( it appeared 16 days ago and they started a medicine which name is ambisome.. still continue.. :( have you got any list what you can eat what you can do after transplant? i want to compare with mine. and do you know any medicine or  somethin support to make stronger the immune system? this sentence is very wrong but i know you're gonna understand :)

what's the diagnosis of Mary Elizabeth?

Aml?

 
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Saturday, September 07, 2013

How the Blog heals me and a moment for Mario

It is my sounding board.  I have these thoughts and feelings and I figure everyone is tried of hearing about the feelings deep in my soul.  Let's be real, I am tired of them.  The fear, the anxiety, the nagging questions, the unanswered questions. 

Being a good Catholic, I lay it all on the alter for God and my favorite Saints and the Universe to handle.  I have to put them somewhere and this is where they find themselves.  Most of the time it works.  Most of the time, after I write it and hit publish and send it out of my life, I can move on.

I often return to find something and I am surprised by what I have said.  It pulls me back to the moment, I rest with it awhile and then release it again.  Sort of like Paul Sommerfeld's catch and release fishing. (Mary-Elizabeth loves fishing and never understands why he sends them back.  If they wanted to stay in the water they would not be on the hook.  If they were tricked to being there then they should not be returned to the gene pool.  They are stupid fish.)

There are things said here that can not be given power of the spoken word.  It is too painful.  It is a sort of long long prayer, one I am grateful to share with those I love or even just intrigue.  There is huge power in prayer, when the whisper goes out into the vast empty sanctuary and the masses repeat:  Lord hear our prayer.  

Mario has been gone for a year, today. He was one of our people. A big lovely young man that fought through so much and his body said, enough.  He received his double cord transplant on January 23, 2011.  The day before Mary-Elizabeth.  We all lived on the floor, watched the progress of each other, complained about the horrible food. Helped each other, asked those weird questions only Cancer mom's ask:  Counts? BK virus? GVHD?

We all survive, we all go on, we all weep, we all worry, we all pray.  We all know tomorrow is another day. 

And I still have to organize my shoes, now there is a big problem the Universe has not sorted out for me.







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Friday, September 06, 2013

Okay, the relief has been replaced by a reality check.

Stress started to enter the picture again.  Just creeping into the edges.  I was able to just let go of all of it for a day. Pretending we were done.   All the worry, the constant fear, the nagging anxiety.  I was able to pretend, for a bit that it was over.

Having Mary-E back in school made it seem like it was over.  It was back to normal.  It's not normal.  I don't have a place to spend my energies, clients to worry about, I have only me to worry about.  It is time I spend some time worrying about me.

Eye doctor: "Sally you have not been here for two years"  Bad Sally
Dentist:  "Sally you canceled your last three cleanings"  Bad Sally
Doctor:  "Sally Annual means every year!"
Mammogram:  "Really, 18 months.! Do you know what can happen in 18 months!!!"

I know what can happen, oh, do I know what can happen.  In a moment.  In a nano second. In a flash.

Okay, so we are still at it.  I can deal with that.  The distance between here and Spokane does give me some room.  A space to fill with "me stuff"  A place to turn my eyes on me, instead of everyone else.

She can handle it.  She has been doing her meds and monitoring for a long time.  I am only the ATM and the Chauffeur.  It is a job I know how to do.  I certainly have learned I can't fix or control and even do much management of Leukemia.

So I will settle into the new role as far off observer and worry from here.  I will take this time to find a new project that puts money in the bank.

Seems like a good idea. 


Okay, Okay, Okay. 

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