Which aspect of your blood cancer treatment journey has presented the biggest challenge?

#3. Getting the motivation to keep on going can be hard. As in not definitive answers on how long treatments will continue. I try to keep busy but at times all I want to do is sleep, yet I have a very hard time falling asleep these days. I find myself falling asleep to early and waking to early as well. I worry about my son having to handle things with selling my current home since he likely will not want to move to my area. Just a lot of things to think about with my age and dx it is a challenge.

What I’ve learned is that there will be as many reactions and comments as there are people. In the beginning,7 years ago ,I felt the need to explain everything and anything so folks would know what I was going through and get a sense of my pain, both physically and emotionally. But that ship has definitely sailed. I’ve also come to understand that many don’t have the ability or empathy or even the desire to walk in another’s shoes, and that’s ok. My problems are just that, MY problems to navigate and deal with and their problems are theirs to navigate and deal with. You may find that this doesn’t work for you, but it does for me, and that is to be “ prepared “ with a good comeback or two when those situations arise. When someone says something totally unexpected, off the wall or even plain rude and dismissive. Recently I was speaking with an acquaintance and telling her how I do think of my mortality probably more than I should, and her husband, thinking he was funny quipped “ oh, you’ve got at least two good years left,” and he laughed. Before I may have lashed out or went on a crying jag, but I calmly asked, has he been drinking again? Other responses have been- that’s a wild thing to say out loud, are you all right? , Even just a simple “ excuse me, would you please repeat that”? I’m not trying to be nasty, I’m just trying to get through others indifference or lack of understanding without cracking every time someone shows they simply don’t understand or care to understand.

For me it's the unpredictability of my body I can feel great for maybe a couple of weeks then wake up and be so fatigued I can hardly move, also having to cancel appointments because of dizziness, lack of balance and fatigue.

With Follicular Lymphoma, the challenge is knowing most likely it will come back. Having been NED since 2020 after R-Chop chemo and 2 years maintenance Rituxan, I know it'll probably be back sooner than later. Also, my body feels so different. I was diagnosed in 2019 at 46. Now I have joint pain, back pain, fatigue...how much of that is from chemo, menopause (induced by chemo) and just getting older. I just don't know. Regardless, it's me now. at 51.