CSN Login
Members Online: 9

You are here

Hello to all!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I have been AWOL for a bit here but I am back on track now I think. I got hit with a double whammy of an evil cold followed by a stomach virus. Then my laptop decided to act up but its all good now. There were so many posts to catch up on and all I can say is,wow lots going on!! Just allow me to wish all of you well and please accept a prayer from me. It seemed to take me a tad longer to get well,no doubt because of not being as strong after treatment. It is a slow process of recovery after almost two years of treatment. My PCP said I would catch things easier and take longer to recover because of the immune system weakness. I think for a year or so. Otherwise I'm doing OK. I just get tired more easily. I plan on discussing it with my Onc when I go back in January. Again blessings and prayers to all. Mary(FNHL-1-4A-7/08-remission)

WonderWoman88's picture
WonderWoman88
Posts: 19
Joined: Nov 2010

Glad that your back!

Im new on here myself but Im making it a habit to log on at least once a day lol. I had my tumor almost exactly in the same spot but on the other side of my neck. I just got into remission and and working on getting things back to normal, health wise. I have to say, so far this site has helped alot and I feel so much closer to people who understand what we all go through.

Hope all continues to go well for you. :)

--WW--

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Hello,welcome and thank you. Congratulations on your remission. Such a good feeling. Yes I was also diagnosed through a lump in the neck but after further exams the lymphoma was found to be very widespread including the bone marrow. But I was able to achieve complete remission including the bone marrow. I am not exactly sure when they start counting the remission date but I had my first clean PET scan halfway through the treatments so that would be last December. I sure hope it continues. I go back for a CT in January and the worry is starting to creep from the back of my mind to the front!! I have had 2 clean PET/CT scans since my remission but it's still scary. I feel like I'm dodging bullets. But I do have a lot to be thankful for. Hope all continues to go well for you too. Mary

yesyes2
Posts: 592
Joined: Jul 2009

Hi Mary,

It's good to see you back. I was off the board for a number of reason for many weeks and it's good to be back too. Like you I feel that my immune system is very weak and I can and do catch any bug that comes by.

I asked my onc on my last visit where you count remission from. He said you count from when you end chemo. I was in remission, like you, after my second chemo in December. But I didn't finish until mid February, so I guess I count from February.

Blessings to all,
Leslie

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Glad to see you back also. Ah yes the challenged immune system can be a problem but at least I have gotten the two main things that have been going around out of the way and had the flu shot so with any luck.... So with the info you provided my remission date would be about the same as yours,mine being the end of last January. I did go on to have the Zevalin in April though. Take good care. Mary

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

Hi Mary,
So glad to hear you are back on track and your laptop is fixed. Being sick is one thing, but when other things start going wrong it just adds to the stress. I'm sure not bouncing back after round 4.I got lulled into the idea that I was just going to breeze through chemo and then "wham" round 4 staightened me right out..ha! I get tired so easily even when I do simple stuff...walking to the kitchen or the mailbox, and especially after I go down stairs to the laundry room. By the time I get to the top of the stairs I'm swetting and out of breath and feel like I'm going to colapse. I "REALLY" hate this feeling. I know everyone said to be ready for this, but "wow"...until you experience it you really can't prepare for it. Anyways..one week from today is round 5 and then my last round on Dec 14th. At least now I'm prepared for the extreme fatigue since it finally happened to me...UGH! Blessings to you also Mary, and thanks for always being so helpful.
Love...Sue (FNHL-2-3A-6/10)

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thank you,it's good to be back. I can so relate to the fatigue you are describing. I remember it well. It is so profound at times that it can be scary. There were a few times that I was afraid to go to sleep because I didn't know if I had enough energy to keep breathing.Lol I did though. It was a very different sort of fatigue and unless you have had it it is hard to describe to someone. But do take heart, it does get better gradually. If memory serves I noticed a big improvement by 6 weeks after treatment with each day or so getting better. However within 9 weeks post treatment I had the Zevalin so that may have muddied the waters for me a little. All in all I feel good but tire faster. Lets say if I got 32 MPG before I probably get 20 now. But that's OK at least the car still starts. I also returned to work full time, have two teenagers living here and spend a lot of my spare time helping the daughter with her twins. It's kind of like trying to wash the windows......yes I did see that post silly girl!! You take care and I wish you all the best. Mary(FNHL-1-4A-7/08-remission)

truckingalong
Posts: 444
Joined: Aug 2010

Hi Mary,

It is good to hear from you. I know how you feel about being ill and needing to rest up and being busy for a while. I had a cold for 2 weeks plus real anemia. Then I had my first blood transfusion last Friday. Oh wow, I feel more energy for the first time in more than a year!! Before I was diagnosed, I have been having anemia for quite a while. Dang, wish I had this transfusion before! Anyway, I am past round 3 out of round 6. Will have PET and CAT scans first week of Dec. Cross my fingers.

I like your analogy of 32 MPG now going 20. Good perspective to let it go faster or slower at a time!

With best thoughts,
Liz
(HL-4B-8/2010)

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

Hi Mary,
I hope you continue to feel better each and every day. Please take it easy and be careful during this cold/flu season.
Peaceful healing
Lisha

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

Glad you're back. Oh we certainly understand! Hope you continue to heal and feel better every day. Blessings.

Donna

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

You take care of yourself too. It sounds like they are keeping a very close eye on you and that is good. You may just get to hear that "R" word soon. Each of the Lymphomas seem to have a slightly different timetable, so hang in there. I'll say prayers! Mary

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I do feel better and hopefully have gotten the seasonal illnesses out of the way. In reading through the posts I missed I was able to see that you're plate has been extremely full and my heart goes out to you but I also have a lot of respect for you and your ability to forgo your own circumstances to help and support others. Now you have really earned some Lisha time so please take it. All the best and a prayer to you. Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Glad you are back you were missed. I am glad you are feeling better. Do you know if Catwink and Natalie are o.k.? Natalie is young , blonde and has a beautiful little blonde daughter. She was having a BMT in June I think. Catwink is a very young grandmother. I just need to know they are o.k

Subscribe to Comments for "Hello to all!"