Checking in

Nice to hear from you Linda! You along with many, many others on this forum helped me through the hard times.  Several are still on here with their words of encouragement and their wealth of knowledge. I’m 2 3/4 years in remission from my DLBCL and stem cell transplant  and just graduated to 6 month scans! I follow the new treatments all the time and just love the research that continues. I did retire, enjoy volunteering at the local botanical gardens ( it was hard for me when I couldnt work in my own garden going through treatment) and will soon be watching my new grandson one or two days a week. I worry everyday about a relapse, but just typing this makes me realize that life is good!!

Sharon 

lindary said:

life is good

Grandkids help too. Our son has 4 kids and we see them once or twice a month. Depending on what is going on. Having them around just livens up the day. In Dec our oldest daughter will be having her first child. As time goes by and life happens I think less about a relapse. I don't know about you but when I was told we would go to a 6 month schedule I thought it was too soon. It's like leaving home for the first time.  LOL.

 

Great hearing from you, Linda.  CSN had a data loss some time ago, and ALL posts from that time were lost. I suspect that is why your pic is now gone....

I go ten years clean of indolent lymphoma this month (NLPHL, basically the HL version of NHL follicular).   I can relate to all  you wrote above.  The best to you, and please stay in touch,

We knew you were out there - the only question was how you were doing. Now we know.

Life is indeed good.

lindary said:

missed the group

I can't believe that after my Oct appt with my oncologist I will be seeing her just once a year. It will also mark 4 years since my last chemo. I do find it interesting that sometimes I have to go back to my journal to remember when certain things happened. It am so glad I am able to watch our son's 4 kids growing up. In Dec our daughter (#2 kid) is going to have a little girl so that will be grandchild #5. She got engaged earlier this year and the wedding will be next year. I am so glad I didn't miss all of this. 

One interesting thing that I learned from my Hematologist/Oncologist (five Board Certifications) during my first few years after ending treatments is that "Survivership," such as in NIH "Five-year Survivorship Statistics" are measured from the date of diagnosis, and not from the date treatment ends.

Others may or may not have misunderstood this the way I initially did.

illead said:

Been meaning to say hi

It's so good to hear from you and know you are doing well.  So glad you can relax and not have such a worry, it's always there but at least like you say, there are more positives with lymphoma now. Bill is still in remission.  You might know that in '17 he relapsed twice due to having to get off of Ibrutinib because of intolerance.  We went to MD Anderson 6 times that year to see an MCL specialist and he put him on revlimid and rituxan, so as I said he remains in remission.  Of course we are thankful for that.  Enjoy retirement and those grandkids.

Becky

Delighted to hear that you and Bill are well also, Becky.  Geeze...six trips from California to MD Anderson, I didn't know it ihad been that many. Expensive and tiring, I'm sure.  That, plus all the work you did on treatment research during the previous ten years or so:  you are literally a lifesaver.

I will add that I have said for years that my wife did more to get me well than I did, my wife and the doctors.  I believe this is frequently true of cancer patients.  My Lymphoma was absolutely harder on my wife than it was upon me.  May caregivers be blessed...