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
 
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.




 



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?






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.

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.

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. 

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.















 

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.  

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 :.(