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Here I am

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi All,
So very sorry for the long delay in responding to you. I read your posts, and cried. I am so touched that you worry about me. I feel like I have missed so much with all of you.
Congrats to you Sue and Vinny.
I have been so overwhelmed with life, that I hardley have time to look at my computer.
Delores is still holding on, she no longer is out of bed and only takes a bite of food. I have been doing my best to support Keith during this sad and difficult time. We have been there every day and also try to visit with my mom, we are all she has too.
I am so tired and my reserves are depleted, I don't know how I keep going, but I am.
I am so ready to start getting well. I went for the brain scan and when I arrived they told me to go home. My dr had canceled it and didn't tell me. The plan now is to have the new drs order any other tests. I hope I don't need many more.
I will be going to Houston,Texas, MD Anderson Cancer Center. I have been talking to them and so has my pcp. I should have everything set in place next week. I am a little scared about going out of state, but truly believe that I will get the best and right tx. I believe that they are way ahead with research and options. No one should be told that there is nothing that can be done...
You all have been so great with your words of wisdom and advice. I hear all of you in my head telling me, "don't take no for an answer and get another opinion, find a dr who will listen to you and will solve the problem with you"
Thank you thank you thank you.
I will keep you all updated and do my very best to sit at the computer and say just say hi.
Today, I plan on staying home and reading all the posts that I have missed. Keith has already been to his Moms this morning, he let me sleep till 11am!. I am still in my jammies as I am typing this. It feels really good to have an at home take it easy day.
I told Keith how worried you were about me and he said to get right on the computer and let you all know what has been going on. You all are "family" to us both.
Peaceful healing
Lisha

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Lisha,

It's great that you are taking some time off. We should all stay in our "jammies" (or whatever passes for jammies) all day once in a while. I did the same thing today. Had a horribly long day at MD Anderson yesterday followed by the 5 hour drive back home. (Not as long a drive as you will have, I'm sure.) But didn't get back until 9:30 last night after the usual prodding and probing and sticking. Got up around 4:30 this morning and came out to sit in front of the fireplace and read for a while. Never did get dressed until sometime this afternoon - and have not even gone outside all day. Took the day off, just like you.

So, I think it's great news that you are going to MD Anderson. I live in the Dallas/Fort Worth area of north Texas. We have great hospitals and cancer centers up around here. When I got my cancer diagnosis, I didn't even blink before contacting MD Anderson and getting a personal referral to go there. I was assigned to Dr. Younes, who is apparently the chairman of the lymphoma department. (You can google all of this to get more information.) Here is what I know. The hospital is run sort of like a machine. The testing is done via specialized departments, so you will go from one to the other all day. One for your PET, one for your CT, another for your bone marrow biopsy, etc. Then, a few days later, you will meet with your assigned doc. I have to admit that there is not a lot of patient to doctor time. Mostly it's just grinding through all the tests and then a relatively brief meeting with the doc who will discuss with you their findings and make a recommendation for treatment.

HOWEVER, their testing is as good as it gets. And they have medical experts, not just in lymphoma, but in each TYPE of lymphoma. The reason that I went to them is that both my Dad and my Mom were "saved" from cancer by the docs at MD Anderson. Won't get into the details, but my mother is a 30 year survivor of breast cancer - even going through the process of it coming back on the other side. So I didn't hesitate to go there.

It turns out that my treatment is pretty standard and, no doubt, could have been handled easily by my onc here in town. But I would do it again if I had to, just to be sure.

Please let me know how it goes for you. And in the meantime, enjoy your day off.

Tom (DLBCL-4-7/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Tom,
Thanks for all the insider info on Anderson. It's always good to have some sense of what is to come. Iv'e been to Dallas for a week about 10 years ago. My daughters boyfriend fell into a crevace on Mt Everest. We were there for the memorial. If you lived in the area at the time you may remember reading in the papers about him. A brilliant young man about to start med school. Trevor Stokol was his name. Anyway, I have also been to the Dallas airport, but I have not been to Houston. We will fly since driving would take a few days. I live in Ca near Stanford University.
I am typing this now since my quiet day at home was changed. We took dinner over to MIL place to share with sis in law. At least I had a good part of the day to just chill in comfy wear...
Thanks again for your tips on Anderson.
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Lisha,

So happy to hear from you! Been wondering how things are for you and your mom... My mom is hanging on too - she now does not get out of bed 90% of the time, even tho, she goes for chemo, she is mentally not interested to move around much and that is sad. My father is starting to grieve bit by bit so I ve been comforting him... not easy. On the other hand, I have good news - last Tues., my scans show that my cancer has disappeared but will still need 3 more chemo treatments to be sure the job is done. I m still shocked and happy to hear that.

I wish you much luck in going to MD Anderson Center and as you said, you believe you will get the best treatment - I believe in that too. I will continue to pray for you. Rest a lot then!

Hugs,
Liz

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Liz
What wonderful news, congratulations. Hopefully the next three chemos will sail by. Enjoy your wonderful news and have a happy holiday with your family.
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Thanks so much for the congrats and I pray for your good progress with your treatment soon.

Hugs,
Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Lisha,
It was just a short delay,but we can expect that at this time of the year and plus all you have going on right now. We get worried when someone that is part of the family doesn't post something. We will be posting back and forth and all of a sudden we realize someone is missing.hahahaha. I have gone a few days myself without posting so I know how it is. Just wish they would speed that appt. up for you. Remember, that positive attitude will guide you thru this. It is no rush,knowing all that is going on,but keep us informed when you can. John(FNHL-1-4A-5/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Lisha,
It was just a short delay,but we can expect that at this time of the year and plus all you have going on right now. We get worried when someone that is part of the family doesn't post something. We will be posting back and forth and all of a sudden we realize someone is missing.hahahaha. I have gone a few days myself without posting so I know how it is. Just wish they would speed that appt. up for you. Remember, that positive attitude will guide you thru this. It is no rush,knowing all that is going on,but keep us informed when you can. John(FNHL-1-4A-5/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi John,
Little peep checking in.. I hope your strength is gaining daily. I know it has been a long hard road for you.How are your eyes doing, better I hope. I too, wish that they would speed up the app. My guess is that with the holidays and faxing of all the records, it just takes a bit of time. It is a good feeling to know that I have the beginning of a plan in progress.
Happy holidays to you and your family..
Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lisha,
When we didn't hear from you I figured you were busy taking care of Delores and your mother along with getting your treatment plan going. I hate to see you have to go so far from home for treatment, but if thats what it takes, then it's what you need to do. Sounds like it's a top notch cancer clinic, so at least you know you will be getting good quality care. When I start to feel sorry for myself I always think of you and others in the group that are doing double time with hurdles in front of them and then I shape up real quick. No pred had to be taken for me today, so I am very happy. I am sooooo relieved to finally be done with that for awhile and "God" willing...forever! I also spent yesterday lounging in my jammies...just didn't have the energy or desire to do a darn thing and didn't feel the least bit guilty doing it..ha! Be sure to keep us posted on Delores and your mother, and any news with your appointments. Not a day goes by that I don't think about you and all of the others here. Love...Sue (FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Lisha,

Glad to get the update and will certainly continue to pray for you and yours. Keep us posted as you can. You know how "family" worries!! :)

I like your day off idea with the jammies. Everybody should take that advice and sloooowwww down. If there is one thing good that came from my dx it is that I am much more willing to take a break and just stop. I live in New Jersey (where everything goes at warp speed) so you can imagine what a stretch that has been for me! ha ha

Love and prayers for the Holidays and always,

Donna

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Donna,
yes I know how you all worry. I'll do my best to keep you all up to date.
I agree, jammies can be your best friend. Cozy and comfy, something we all need in our lives.
Happy holidays to you and yours.
Peaceful healing
Lisha

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,
Yes I have been so busy with Moms. Also trying to keep me in the picture..
I am so very happy for you, no more dreaded pred and no more chemo. Hooray Hooray !
Have a wonderful Christmas with your family.
I think of you everyday too.
Peaceful healing
Lisha

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