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Weekly Checkup

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I had my first week checkup with my radiation onc yesterday. I finally got the opportunity to ask him how much bigger it was compared to my scan in June. He said 50%! I have a hard time believing this is slow growing. I am tempted to ask the transplant doc to do a second review of the biopsy to make sure it IS still indolent.

I doubt at this point with the rads I've had that they could do another biopsy to confirm. I am getting tired, but other than that I seem to be doing well. He seemed happy anyway.

I really deep down in my heart feel Denise is gone. I don't remember how old her oldest daughter is, but I can imagine she's extremely overwhelmed with all the details and processes ahead for her family and younger sister. I hope I am wrong. This feeling just keeps getting stronger and stronger the longer it goes with no news. I know how scared she was before coming to terms with the fear of transplant. I don't think the odds of coming out of pneumonia after transplant are good. I know of too many who got infections and died from that. It really makes me sad. Like I said, I hope I am wrong.

Not much else going on at the moment. I hope everyone is doing well and enjoying the nice fall days. It's actually gotten to the point where I got my winter coat out.

Take care everyone and I hope to keep in better contact, but by the time I get home from work I am completely wiped out.

Beth

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Beth!

Thanks for the update. Yeah, I'd be concerned too if it was still
slow growing. Glad your doctor was happy - that's usually a good sign :).

Concerning Denise, I'm still being hopeful and optimistic but I know
we've all had similar thoughts.

I've been wearing a light coat myself. I think after a certain age, the
cold just gets in your bones ;).

Hugs,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Beth,
I agree,I would be asking the Dr, a lot of questions at your next appointment. As far as Denise I agree with what you are saying. Did not want to come out and say it,but I am sure everyone is thinking the same thing. What else can we think. Kim asked us to pray for her mom. She had no trouble asking and we did pray for her. You would think she would be back to let us know our prayers worked,but she hasn't. Like you said,she may be overwhelmed with the outcome of her pneumonia struggle. Hope we are wrong. This is what happens when there is no one we have left our private info with in case we would be in the same situation. To be honest with you I only know the last names of only 2 members. One has my permission to let everyone know if something should happen to me. Who knows,I could walk outside tomorrow and a meteor could fall on my head.I wouldn't be able to post for a while and I'd want everyone to know why...John

I know to a lot of people this is just a place to go and tell our feelings to each other,but it can't be helped when we start to feel like this is a family among several of us. Some of us have been here over 2 years and when someone doesn't post for a long time we start to worry.I have watched people come on here and get their answers and then pull a Houdini on us. We never hear from then again. Then there are the ones that have been here ,like yourself and several others including myself that try to be here for everyone. If one of those people did not respond and never gave us any reason we start to worry about what happened to them.You have seen one of us old timers on here ask ,"Anybody heard from....?"
I bet you can tell the names of the people that have been here forever without even having to think about it. I know I can. If I don't see a post in a couple of weeks I automatically start to wonder why. I am sure you do the same thing. Now we are stuck wondering about Denise and may never ever know. If she would have given her info to just one person and permission to let everyone know if something went wrong we would at least know one way or the other. Holy $H1T..!!!! I almost fell off my soapbox. Soapbox John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Dixie,

Has your radiation oncologist thought about "seeding" radiation ?

We are pulling hard for you !

max

DadysGirl
Posts: 322
Joined: Aug 2011

Hi, my wonderful Dad had diffuse large b cell nh lymphoma and his lymph nodes had enlarged in two months so I would also be concerned that hopefully not but may have taken a more aggressive form. Even if it has they have a high cure and the sooner they have a confirmation of it or. It the sooner treatment could start. I feel for Denise and her daughter, don't recall Knowing Denise and the details of her situation but if what docs claimed to be pneumonia did not turn out to be pneumonia as in my wonderful Dad's case, things take such turn downward so quickly that one goes into shock and I really hope that is not the case, it takes a while to face realities and be able to write here I was on here I think less than two months but felt the,need to come back to share my Dad's passing as I knew pp here truly care and mean everything they say from their heart and as I write this I started to cry... Only pp that go through this disease can understand what the other is going through and that is why I feel there are such strong bonds here... I hope they are overwhelmed but still her mom is with her and on the way to recovery, I truly hope that is not the case but if things did not turn out to be good, we all hope her daughter will come back and let us know how things are when she feels up to it... It's very difficult... My Dad and we had gone through a lot but just getting past sct was the best thing for us and everything changed within 9 days how aggressive could it be that the docs said they only read it in textbooks but never saw another patient with the same outcome... It still doesn't seem real, it still feels like my Dad didn't die... Must be the patience God gives us all to continue... I know He died but it gets blocked there and can't go beyond that phrase to comprehend it... There are moments when it does hit so badly and that's when I realize Im never gonna see him again in this world and that he is not coming back... Life is not easy... It's so difficult and hard and yet life goes on somehow someway... I feel like I'm just here waiting for my time to expire so I can go... Wishing you and everyone THE BEST AND NOTHING LESS... hugs and wishing you to always have the beautiful smile that you have...

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi DadysGirl,

I just wanted to give you a big cyber HUG. I'm sure your dad was very proud of you.
I wish there was something I could do to take away the pain but it will get better
over time, eventually. I lost my youngest sister just before Christmas last year. I
see and feel her everywhere. Sometimes it's very sad and other times it's wonderful.

Please know you have friends here and are welcome always.

Jim

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