stuck in limbo...

mominmaryland · New User Joined: 03 Jul 2009 Posts: 1

hi all. i've read the bajillion other posts about swollen lymph nodes in the neck and also read that only like 1 out of 80 actually had lymphoma. my story up to right now may be sorta similar...but it doesn't feel that way. i went to the er last week with shortness of breath. i assumed it was pneumonia or bronchitis or something. doc gave me a breathing treatment and did a chest xray. after the xray results i was sent straight in for a ct scan. about 30 minutes later doc comes into the room, puts his clipboard on the table and plops down into the visitor chair beside me. well that's unusual but whatever maybe he's tired or something right? lol. anyway he tells me that the lymph nodes in my chest are enlarged and asks if i've been sick. i haven't so he proceeds to tell me he thinks i may have lymphoma. he tells me a bit about it and makes sure to mention several times that its highly treatable and very important i take these antibiotics, use an inhaler, and come back in 2 weeks for another scan. he says if the enlargement is still there i will need to go to a general surgeon for a biopsy. so...i come home and google 'what is lymphoma?' i don't have a lot of symptoms but i have severe fatigue, which i thought was because i have 3 children, itching, which i put off in the winter as dry skin and up to now the change in weather from cold to hot...made sense then even though i didn't have dry skin and i never really leave the house so i'm climate controlled Rolling Eyes

so maybe, maybe not. now everyone around me goes from calling every day to see how i feel (umm the same as before) to telling me i'm fine, it won't happen to me, god will take care and everything will be okay. my sil wants to compare stories about the time she found a lump and had a mammogram and everything was fine but she still has to do a follow up like a year later and that it seems odd to her that the doctor told me what he thinks it is and maybe he's a quack, seriously?...i don't know why but it makes me mad. mad that they seem to think i will keel over any day now and mad that in the same breath they can deny it, ignore it, and i have to deal with accepting the possiblities and making plans for the worst. day care, transportation, etc. so, sorry this is so long, and sorry i'm venting here. limbo freaking sucks...not as much as diagnosis and treatment i'm sure...but it sucks.

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Hi and you are right - limbo does suck...
and you are right...family and friends mean well but it is very difficult for them to be truly empathetic unless they have been where you are now. I have 7 sisters and 2 brothers and after the initial rush of OMG, OMG, OMG what can I do stuff I said thanks, I will keep everyone up to date via emails so don't call me, I'll call you. It was important for my sanity and it has worked pretty well for both family and friends while giving me a measure of control that was lacking at first.

I was diagnosed about 9 months ago after about 3 months of back and forth, various tests which culminated in a biopsy of a lymph node in my groin. When they finally told me my diagnosis, (follicular lymphoma) I almost felt relief because I now could at least begin to learn and figure out what I was going to do about this problem. It sounds to me like the ER doc was a pretty good guy and, most importantly to me, it sounds like he was very honest with you.

You will learn if the diagnosis does turn out to be lymphoma, that this is a disease that you live with far more than one that you die from (although that may also be true but, what the heck, that just puts it on a long list of things that kill us in the end, right). At least, that is how I am dealing with it and it is working for me. For the vast majority of us who are in this space, life is long and there is much goodness to be had following treatment. So, hang in there, know that you are not alone and that there is a whole world of people out here who are dealing with what you are dealing with...good luck to you.
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

ChemoMan · Posted: Fri Jul 03, 2009 6:26 pm Post subject: Re: stuck in limbo...

Hi mominmaryland

really sorry to hear of your concern about Lymphoma.
Don't panic as Lymphoma can be treated very successfully these days. At this point you don't really know what type of lymphoma you have in fact from what I read you don't even really know if you do have it. Also there are more than 35 different types, some are slow like follicular lymphoma and others are very fast like B cell lymphomas. The fast ones are lethal and kill very quickly but fortunately they are also the ones that respond best to chemo. The slow ones people can live with for decades but unfortunately do not respond as well to chemo.

Relax, I know that is difficult but try anyway. Wait until you get a definte diagnosis before you do your research, then you will be able to target your reading to your specific lymphoma. This is important as it will help you frame questions to your doctor, and knowledge is power in that circumstance.

Don't concern yourself with what others do or think, you really have to focus on the fight ahead, if indeed there is a fight to have. kermicas advice on how to handle family sounds good to me.

Good luck I hope it all goes well and remember that we are always here to help
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

4hope · New User Joined: 15 Jul 2009 Posts: 5 Location: California

As far I know there are about 9 types of B-cell lymphomas and Reticular L. is also B-cell lymphoma. Maybe you wanted to say that some B-cell L. could be indolent, low grade or could be of an aggressive type. Aggressive l. are the one that can actually be cured in 90% of the cases. Indolent can be cured very rarely but can be treated (controlled) with much more ease.

Tough "choice" huh ? Crying or Very sad

Best of luck Mom !!!!!!

Don · Posted: Fri Jul 17, 2009 6:52 am Post subject: Re: stuck in limbo...

Hi,

Sorry that you are having to go through this. We have all been where you are now.

First of all, you had a CT scan and I can tell you that ususlly they are correct; sorry to tell you that. When they just had x-rays, diagnosis were iffy, but CT scans are right on.

Secondly, you say that you are going to all the web pages...well, that can drive you crazy. There is on web site that seems to be better that the others and that is lymphomation.com. It has a brown background.

Thirdly, as ChemoMan says, there are many kinds of lymphoma. The only way they can really tell is from a biopsy.

Fourthly, you are not going to "keel over". Lymphoma is very treatable, if not curable. Look on this web site...most of us are living our lives as usual. If you had to get cancer, lymphoma is the one to have.

Good Luck...DonB
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

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