Judy some of your posts to me were so uplifting. It is wonderful to know that when we want to unload and not add more stress to our families we can come here and always find a caring shoulder to cry on. Drop me a line anytime Judy. my email is firstname.lastname@example.org
If it goes in my junk mail just put something in the subject line like LLS and I'll know it's from over here.
I also went all through Cindy's page on here and her caringbridge. What a long hard battle she and Ed have faced. Prayers are the only thing I can offer at this time.
Long time "me no post". So many things happening in my life, yet I wanted to say CONGRATULATIONS on dancing with NED. So much of the time I don't think about the lymphoma and will it come back or not. I was told in January that I was cured of the Intermediate Grade lymphoma since it was 5 years from end of treatment, woohoo. Yet, I'm still getting a CT scan every six months. Hoping all stays quiet, come April of 2013, I'm hoping to go to yearly scans because it will be 5 years since my very small relapse of FNHL.
I'm glad to know you're relaxing into NED.
Blessings and God's peace,
I just read a post that you answered to someone. My first thought was I have to find out how Jane is doing but I didn't want to take over that sweet lady's post.
The end of this month I will have 7 months in remission. The first time was only 3 months so I am doing a happy dance. It is wonderful that you have passed that 5 year mark. I haven't posted much lately because some days I don't want to think about cancer. If it wasn't for the exhaustion I wouldn't even know I had cancer. Of course this kinky hair is a slight reminder...lol
Take care and have a cookie on me, I'll bring the hot cocoa or should I make it a iced coffee???
LOL, regarding the iced coffee. I was just telling hubby this morning that I need to make iced coffee because it is too hot for . . . well hot coffee <grins>. So iced coffee with the cookie will be swell.
I know what you mean about not thinking of cancer. That is probably why I've not been on the board much in the past year+, that and Sharon's passing about did me in. However, I do volunteer with the American Cancer Society and have become an Ambassador and go to UAB Hospital Radiation Oncology building (downtown Birmingham, AL) and speak with patients about ACS and the resources they have available. I did my first stent on Wednesday and enjoyed myself thoroughly.
BTW, the exhaustion will let up. It took me several months maybe even a year and the muscle pain I had didn't help. I swear I could almost hear my body yell, "GIVE ME BACK THE PREDNISONE" LOL. Not a chance.
I had been very busy care-giving my dad long distance. He lived in Michigan and the last two years in a nursing facility that God chose for him. They loved him and took very good care of him, when he'd let them <grins>. However, his suffering and fear is gone since he left for heaven on May 2. I'm left with handling his estate such as it is. I miss him and find myself muddled with compounded grief because we lost a beloved kitty in January, then my very special friend in February to lung cancer and then my dad. Sigh. It is good to know God is still in control and I don't have to be. That in and of itself brings me peace.
Sending big cookie hugs with blessings,
I am so sorry that I haven't been posting much lately(except to Cindy and Ed).I am so stressed with my son's wedding(Sept. 1) due to many different personalities.Also,Sjogrens was making me miserable until the meds finally kicked in-got right dose!!
I have been reading your posts though.They make me feel good.Fran,love your hairdo-so cute!Yay! Glad you are doing well,enjoying those grandbabies.
Jane-so sorry about your Dad-I know how traumatic that is-mine will be gone 10 years on the 13th-still can't believe it.My love is with you-take care of yourself.Would love to do some baking(and eating) with you.I love iced coffee! So glad to see posts from Jim and Judy.I think of you all alot.
My last scans were still negative(1 Year!).I am still doing the Rituxan mait. I am through week 2 of the second round.I hope to be done next June,in time to retire and move back to New york.Anybody ever dealt with Lymphoma Center at Univ. of Rochester?Has a name-can't remember.
I feel funny asking,since i haven't checked in for awhile,but did anyone else get really tired,just on maintenance?I can hardly drag around.But,way better than R-CVP!
Will defintely keep better in touch.Miss you all.
Lesley it was great hearing from you. Quite a few of us have been hit and miss on the boards lately. Life does go on!
I know you are busy with a wedding underway plus dealing with all your health issues. I haven't had the R maintenance, because I relapsed with the DLBC thing when they were going to start the R. I have heard that it will cause your white cell count to drop so maybe that explains the exhaustion.
So nice to hear from you and I will be keeping you in my prayers.
I have been in "remission land" for a few months. We traveled for the whole month of July and it was great to not think of docs or cancer! Remission has been since Thanksgiving, 9 months. The onc just called and has scheduled my PET for this Friday and he will call me with the results. I don't have an appointment with the Radiologist for a year and the onc has moved my next appt. to December. They are gradually letting me go!!!
This board kept me moving forward during diagnosis and treatment for the last 2 yrs. I want to give away what I received in all this time. Life is good and I hope all of you are doing great today.
Hey Fran, I suspect your PET will be clear and you will be good to go.
I have had nothing but trouble logging in to this board, it does not want to accept my name and password. Finally got in. yay!
I had another rituxan maintenance early August, bloodwork was normal, and I'm sure not showing any signs of anything. Still tired, but then again, it might be the rituxan and subsequent wipe out of those B cells every other month.
They closed the swimming pool where I was water walking for an overhaul, and it opens again in September and I am ready. I've tried to stay focused on fixing up that dirt patch front yard of mine that sat for the going on 2 years since diagnosis. Now I have little trees and shrubs and such, I even hauled a van load of mulch home and spread all but three bags of it by myself this past weekend, so I guess I have more energy than I used to. Hard to say.
I am going to talk to my onco about when my next scan will be. My last one was in April '11. I am unsure why I am not getting scanned annually and/or every six months. Could be they are confident there is no reason to scan? Perhaps this is the way they can justify doing a CT/PET rather than CT alone? Perhaps they need to review my chart? Hard to say.
I fired my old GP, and my new physician was scandalized that the old GP refused to see me at all while I was under onco care. New guy said it is his job to take the load off of the oncologist, who has enough to think about and should not be distracted. He is in no way afraid of being a colleague to an oncologist. Happy about that. And I am happy that my oncologist did put on his internal medicine hat to help me with a couple of issues. He was also perplexed that my old GP would not see me at all (I think she feared a lawsuit or something).
New GP even ordered up a lot of long-overdue bloodwork. The nurse at the oncology center and I were laughing as they drew the blood there when she accessed my port (all these clinics are under the same umbrella)...we were joking that I'd just about need a transfusion as she filled up the tube caddy with many many vials. But I was given the readout and I am not in any trouble in any of the blood level areas the oncologist doesn't monitor...and of course those he does look at were normal.
so anyway, coming up on two years since diagnosis which means a lot. Other than the tired, I am feeling pretty darn good.
So here's to forever remission and cure!
I hope this site won't be so difficult to get into now that I've gotten logged in again.
I am so glad to hear from you mcee. It sounds like you are spending time in "remission land" and for that I am so happy.
My GP did take care of all my needs other than oncology stuff. The onc said this cancer should have been spotted many years ago so my new GP says she will make it her job to keep track of anything that sounds iffy. I am not too concerned about the PET because I feel fine. Just that darn chronic fatigue.
Hope you can get on the site easier next time. One of my gluten free website is not recognizing my info either. Maybe they updated their site and drop my name since I don't post much there.
Lets keep on keeping on! Oh, my surgeon that installed my port has told me NOT LET ANYONE access my port for blood work, chemo only. All these docs have different opinions about this one. He flushes my port every 6 weeks.. He also believes as long as it is functioning fine do not remove it.
Take care, fran
Thanks Delaney. The onc called yesterday and said as far as he is concerned all is well and I won't need a PET until Feb 2013. He told me everything the report said also. There is activity in my thyroid, intestines, esophagus and liver but he says this is not uncommon after chemo and radiation. My pancreas has shrunk and that can happen after having pancreatitis, which I had all last summer. So no docs for 4 months and no tests for 6... I am so relieved.
I pray all of you guys are doing ok today.