The Leukemia & Lymphoma Society Community : All Content - All Communities

Living with PV AND ET..our new home

dlfowler44@charter.net — Sat, 21 Nov 2009 05:34:24 GMT

Thanks for the info on the itch medicine....I never realized till recently that it wasnt just severly dry skin and that everyone didn't itch and scratch like this. I'm heading to wally world in the morning and will see what I can find that you mentioned.

As for the shows I would LOVE to meet Ellen, but the contact I have is at the Dr Phil show. My daughter was in the national spotlight last year and one of the programers for the Dr Phil show was calling her and I to get me to let her go on the show..that is a long story but I declined at that time to do that. It was one of those times when it just wasn't our battle to fight. But I will contact the Dr Phil show the first of the week and see where I can get....I would bet that our best in is still going to be Sydney.

Mimi, I'm so glad that everyone is having a good visit. It always seems hard for families around the holidays. I hope the rest of the visit goes as well.

I went and saw the new Twilight movie with friends tonight...it was ok, but I think I'm just more of a book person.

I hope everyone has a wonderful weekend!!!

Linda

Dealing with AML (acute myeloid leukemia) as a teenager: What is it it like and how to cope?

kurt_mcnichol@hotmail.com — Sat, 21 Nov 2009 04:14:05 GMT

Ok so I'm kind of new to this and am not sure whether I am posting stuff in the right discussion board

but I was wondering if there are any other teenagers like me who have been diagnosed this year with

AML. I'm 19 years old and was diagnosed with AML on the 9th November 2009. Would be great to hear

from other teenagers who are going through the same phase! I'm so intrugued and interested about this

that I would like to hear other teenagers opinions and thoughts on AML! I feel that hearing or speaking to someone

else that is a teenager who has AML will help me better understand the position I am in because right now at

this time I'm so frustrated with this and I know other teenagers will understand where I'm coming from

Thanks a lot!

Kurt

Does it usually take more than one biopsy to diagnose?

communityreply@lls.org — Sat, 21 Nov 2009 04:03:47 GMT

Thanks all for your kind responses. The waiting game isn't much fun.

Caoimhe, I wish you the best and hope you get well soon!

Dean's latest challenges...

sonyadaisy@hotmail.com — Sat, 21 Nov 2009 03:53:26 GMT

Jerry, thanks for the update, please tell your mom and dad that we are thinking of them.

Partially diagnosed

communityreply@lls.org — Sat, 21 Nov 2009 03:42:44 GMT

Hi Rita,

I too was scared. I still am everyday. I'm certainly not in any position to give advice at this time. But I will say, seeing a doctor will help. You'll at least know what your looking at. You could even be worrying for no reason. At the least you would have an arrow pointing you in one direction or the other. Should you find yourself needing support, you can certainly find it on this board.

Thank you! It feels good to hear that my situation has touched you.

Please feel free to follow my story and please...Chime in at any time.

I really should rest for awhile.

Have a great weekend~

Honey

I recently completed

karolkerrfico@yahoo.com — Sat, 21 Nov 2009 02:57:18 GMT

Sharon and all, yes it was great to meet Judy and John... I forgot to tell you about an unexpected visitor we had... a tiny spider crawled across my plate... i hate spiders... as Judy went to smack it for me..it decided to pull up strings and float towards me... did I mention I hate spiders.... go ahead and laugh... I guess it is pretty funny that a grown woman who is battling this rotten disease is afraid of spiders and snakes (like the one at the library).. go figure....

Karol

Prayers for mom is now an ^^angel^^

nicole_rc@yahoo.com — Sat, 21 Nov 2009 02:53:19 GMT

Hello everyone! Me again knocking on your door:) HI Leslie! Im going to write you on the grief thread!

Im just having a relaxing evening after a long and emotional week. So glad it is the weekend, Thank Goodness! I recieved my memory candle we had made from the funeral home for mom. It has the serenity prayer and her picture. It is so beautiful. You would have thought I was holding her as I clinged to my candle after opening the box and even kissed it! It was emotional just getting the candle as I knew it would be the last thing from moms celebration. I lit it immediatley and promised her that I would light it forever. I was thinking today about seeing my nieces at Christmas. I can't wait to tell them about grandma.. Especially Macy because she knew mom and will remember her. I was day dreaming on what to say if she were to ask what heaven was, so I was thinking of telling her,"Well you know how pretty your castle is that you keep your princess's and pony's? well heaven is much more beatiful that it".. Isn't it crazy the things we think about when we lose someone we love.. Ive already began thinking about how I will include stories of mom in each card I give them for their birthdays.. I so want them to know Grandma Bev. I was wondering today if I ever had a child if I could name her BEVY.. Oh it just doesn't sound great:(, but I like it!

Anyways I wanted to share the introduction of my fathers letter. He wrote this weeks ago and I am finally typing it for him. This is his description of what took place that Sunday that mom went downhill. I think he is a great writer:) and this is the first page of about 15~ Ignore the mistakes please!

Written by Gary Cook, husband to Beverly Cook.

This is my fathers encounter when all changed for our mother on August 2, 2009.

Beverly Sue Cook: Her struggle to go back up the hill one more time.

This particular day seemed to be on track to be another uneventful day. Then the phone calls started coming, calls that indicated something was not as it seemed. The statements being made seemingly could have no foundation, none what so ever. The calls continued, the words got more concerning, and more threatening. The calls kept coming. The tones became serious and voices were broken, desperate, demanding, and finally frantic.

My reaction was astonishment, disbelief and fear. I told these voices it could not be true. The content of these voices in my head ranged from a person who could not breath, a person who cannot walk, a person who had fluid somewhere to somewhere, the liver seemed involved, and blood was in the lungs. An urgent voice with a desperate tone was urging me to go to the hospital quickly, that I should not allow the impending “code blue” to be answered. More voices expressing much pain and crying. A voice filled with despair that was predicting that Beverly was about to be called home. You see it seems for some unknown reason Beverly was being smothered.

As I entered the ICU (Indiana University Hospital) thru the long brown wooden doors, I knew not what was ahead. After all Beverly had been doing fine. She had been working out at rehab and doing great. She did have some fluid removed from her abdomen, and she was coming home soon from the rehab. After all Beverly had been in the hospital and things should not be out of hand. Her room was ready for her return to her home away from home at Thorton Terrace Facility.

As I walked past the nurses’ station, I could have never imagined how many times I would pass by that way in the days to come, and as I passed by the desk, to be observed by many, I noticed in front of me and to my right, rooms with patients in beds. Room after room I passed by and each seemingly was a replica of the last.

Then I arrived at the last room from the end, but just before I noticed to my left, a room of glass. There were people in there doing not much at all. As I reached Beverly’s room I never got passed the door, because I was advised to wait by some hospital staff. They said the patient was still being evaluated. A curtain separated us. Suddenly the curtain turned into a young man, sort of dark, large of stature, and with glasses. His words would be hard to understand. This Resident Doctor started his approach to me in a matter of fact manner, and I knew not what was to come. His words started with a question, to my amazement he asks me, “Has she had a bowel movement yet today?” His words were surprisingly clear, but still I struggled to see. To comprehend the meaning and the relevance was beyond me. I answered with a question, “what do you mean?” The young Resident took me into the room. Here Beverly lies in a bed. Her eyes are closed, motionless, and expressionless. She betrays no pain. Her complexion does not give away the urgency of plight. She seemed to be resting very comfortably so why all the fright?

Where is KCWester

communityreply@lls.org — Sat, 21 Nov 2009 02:41:20 GMT

Not sure yet if the treatment is working. My oncologist thinks that things look and feel smaller but I am not sure. Started cycle 2 this week. Actually been manageable. Nice that on this treatment, I just have the drug 2 days and then am "off" for 26 days. I think R-Benda is also used for mantle cell so if Karl ends up leaving the R-V behind, he has another great option. LEt me know what happens next week and i'll keep yhou posted on me. As it stands now, I'll have cycle 3 on Dec 14/15 and a few weeks after I think they'll scan me and see what's going on. xxxlaurie

H1N1 Vaccine

communityreply@lls.org — Sat, 21 Nov 2009 02:35:51 GMT

Thank you, Fontenrose, for posting that article and for accurately summarizing what I try to tell people about vaccination. The article is excellent - I read it a couple of weeks ago. I believe that so many people confuse correlation with causation - someone gets a vaccine and then some period of time later something happens to them, so it must be the vaccine - and that confusion has caused some parents to opt out of the vaccine, thinking it's the "safer" alternative. What many people forget about are the possible risks of NOT vaccinating, which are clear and proven. That said, Dana is getting her H1N1 in two weeks, when she's off her steroid pulse. It wasn't available to us any sooner, or she would have gotten it already.

Chemo Done , Worried - Waiting

communityreply@lls.org — Sat, 21 Nov 2009 02:03:34 GMT

Hello Jane,

Thanks for your thoughtful words and advice. I will take much from them.

Petraios