“What you spend years building may be destroyed overnight. Build anyway.”
It surely has been a long time since I have posted! Some of us have stayed in contact on FaceBook in one of the MM groups and so I haven’t felt overly disconnected, but disconnected nonetheless. What can I say, but we are doing extremely well. The kids are pretty grown up, self sufficient, enjoying their lives. Dave and I are back to the grind so to speak, but with interesting changes. We continue to be happier than we have been in our three plus decades together. Dave continues to work entirely too much – that didn’t change. What did change is he enjoys it more. Who’s to say he wouldn’t have anyway being more “mature” at this point. Or maybe it’s the company, his colleagues, the work itself? I don’t know, but it’s just nicer, even if I wish he could manage it a little better. What has changed is that he can truly leave it and enjoy our time together or visits from friends and family. He doesn’t have that distracted “I’m thinking” look he used to have no matter what we were doing. It used to annoy the hell out of me. 🙂
He has been working out with our amazing trainer Lou now for over a year. It has been a long hard road but worth every bump in it. Dave is incredibly strong now. His stamina makes me feel sloth-like. In terms of his immune system, per our last visit to UAMS, no real recovery. His WBC is still low and other things as well. But he is stable, and by outward appearances, seems like he has fully recovered. We are still thinking of doing twenty therapeutic HBOT (Hyperbaric Oxygen Treatments) to boost his stem cells and stuff. It will have the added benefit of continuing to repair the radiation damage to the skin. As life seems so normal though, we (namely me) are a bit slow (sloth-like) on getting this stuff scheduled!
We are late with our current check-up in Arkansas, largely due to Dave’s recent extensive business travel and then with the holidays LOOMING, there is the usual angst about keeping everything together and organized that seem to prevent him from making a commitment to get there.
I have been traveling a lot to visit my sister, our daughter, friends. Galavanting around doing fun things with my weaving and spinning adventures. I’ve been very lax getting any weaving actually done, although I have been continuing to garner knowledge, materials, ideas, etc.
So while I have much catching you up to do, here is a snippet of my latest creations.
I continue to receive traffic on my blog, albeit much less since I’ve been so inactive. I still receive some emails from folks from time to time and try to get on those as soon as possible, although I still owe a few a response. It’s weird to me sometimes how much I’m struggling at times and then at other times I feel really great. I try not to analyze it too much. Some of it seems fairly normal to me and then at other times I chastise myself for not appearing to be happy. I am happy, but some days I still feel a bit melancholy. I think about my friends who have not made it. Their caregivers struggling on their own. Other friends who have died from other cancers. Life with memories cut short abruptly. Those who are struggling right now with relapse or newly diagnosed. Sometimes I think it’s a lot to take on and other times it seems very clear to me that the connection must be maintained, if for no other reason than to offer hope. I remember clearly how important that hope was to me over 5 years ago. FIVE YEARS AGO! Dave has already surpassed every expectation (not mine of course, I’m his wife, we are never satisfied!!!), in terms of the medical community.
Anyway, hopefully I will get back on track with a few things here and catch you up on many happenings in our life. Dave replaced my macbook for me recently, which is very helpful in that effort. I was becoming extremely frustrated with my old one being difficult to do even the simplest of tasks.
I hope you are well, that your treatment is accomplishing all your goals, your checkups are stellar and you are finding ways to laugh.
Hi Jim (and Kim), Thank you for leaving a comment and I’m very happy with your news of Kim’s remission! Woo-hoo! Yes, it is encouraging and yes, it gives us all hope. Even those of us in the remission camp. We want everyone there with us and for – ever. Not the least bit greedy uh?
I’m glad you shared your journey and I’m happy that sharing mine was helpful in any way. Many people have told of their need to give back when they come up for air on their cancer battles. I felt the same way. I tend to me more solitary these days by preference so my blog was the way I wanted to make that contribution. But it was also very healing for me, as I’m sure you can appreciate caregiver to caregiver. That need to connect and express things that are hard to say out loud.
Take care and continued CR!
Best, Lori
Lori
I have not posted here before, it is now 2 full years since my wife Kim’s Multiple Myeloma diagnosis. And 1 1/2 since her stem cell transplant.
She continues as of last week in full remission.
As her Care Giver through this journey, I found all your posts extremely helpful, for me.
You state in this post, “If for no other reason than to offer HOPE”.
Like you, I wrote an almost daily post on CaringBridge, all the good, and all the bad. I believe, that sharing the trail with others, together, made a wonderful and miraculous difference for Kim and I.
I continue to provide updates to those that shared our trail {and continue to do so} because, I fully and firmly believe in helping to provide HOPE to those that share this journey.
Sometimes HOPE is all we have to hang on to, Thank You for writing of your and Dave’s Journey.
Jim Odekirk Wisconsin
Hey Shelley! Thanks. I appreciate your encouraging words and while taking a break from your blog is probably a good choice, at some point, it might be encouraging to others to know how you are doing and dealing with the changes in your life. Grief and loss are so powerful. Taking the journey with those who are working to overcome it and come out the other side is one we can appreciate and admire.
And I so understand the accomplishment of little!!!! OMG! When we would come back from Arkansas I wouldn’t even unpack, or get dressed for days! Dave would bounce off to work and I could do little but get something together for dinner! Then we would be heading back again and I was in full mode. 🙂 It took me a long time to recover after it was mostly done and thus my blog was born – to help me process it all. 🙂
Good to hear from you friend.
I’m really happy for you guys! It is exciting to see that there are people who are able to go back to a “normal” life again. You are right. There have been so many that have passed away, including my husband, but we need to continue to encourage those that are still fighting the MM monster.
I’ve also been taking a break from my blog. It’s hard to get excited about doing anything these days. I consider it a good day if I can accomplish anything, even loading the dishwasher. I’m learning to not be so hard on myself. 🙂