“Creativity is allowing yourself to make mistakes. Art is knowing which ones to keep.” – Scott Adams
I’ve been busy with a myriad of things of late and enjoying myself as well as feeling a tad overwhelmed. My new logo has been designed, courtesy of my former boss, dear friend, and Godfather to my children, Ron Baker. Didn’t he do a nice job?
I found a wordpress theme more suitable for my site called Storefront Themes. It’s designed specifically for e-commerce and I’m excited about it. Now I’m working on understanding how this site works to get it operational. I’m renewed, rejuved, and recharged on getting it moving forward. In the mean time, weaving is cranking and my “studio” is slowly making progress. It is much to confront.
When Dave got sick he was never able to come back to Maryland and go through his stuff and cull things out before the move. I was not able to do a lot of that myself. It was a simply an urgent crisis needing to be handled! What was all laid out nicely, with a comfortable timeline, was thrust to the front lines in confusion and coping as best I could. Friends joined in the fray to get everything into boxes and offer me companionship, support, conversation and real help. My in-laws were at the California end doing the best they could to help get things operational and I was still working long distance to train my replacement with a 3 hour time difference. It wasn’t pretty. Then a year of traveling back and forth to Arkansas for Dave’s tandem transplants.
My poor “studio”, which is essentially a bedroom, that Dave so graciously wanted me to have when we moved, was wall to wall boxes for what has now amounted to years. It doesn’t feel like it, but it simply has been. Then you know how it goes, you start digging for something you know you have, other stuff get’s put in there “for now”, there is a little pathway to maneuver when necessary, but it doesn’t take long to have a feeling of real depression about it all.
This week I have cleared a spot on my “desk” for my laptop and moved myself from my usual kitchen island perch, the hub of any home and my life for years with the children. I knew that if I had to sit in the mess I would begin to tackle it more passionately. It’s working. Dave outfitted my closet with shelving and I have but to secure the vertical bars on one last bit and it will be secure and ready. I boxed up 10 boxes of Dave’s books, explaining that the bookshelves we brought were for “my stuff” not his. He needs to confront HIS OFFICE. haha He was agreeable. I was as nice as I could be about it and organized it all for him. He can neatly find anything he wants, all labeled. I need a new table, as my art table is just too high if it’s not angled and I need a flat surface now.
While I’ve been beating myself up over this for sometime and taking over other corners of the house with my weaving stuff, I realized as I was in there, that the boxes aren’t so many anymore. I have actually handled a lot more than I realized over these last few years. No, it’s not done, no I’m not “in there” yet, yes there is much more to do, it’s not perfect, but waiting for perfection is a losing battle in this. So all in all, a productive week and still weaving and moving forward with the things in my future.
I’m meeting Barbara for lunch on Tuesday. Another Myeloma caregiver I met here in Sacramento, but more importantly, an amazing painter and person. I have so enjoyed getting to know her and we are meeting up for an “ART” meet-up lunch.
Our son Hudson is growing into such a wonderful young professional. Learning his business and impressing me beyond words. We are planning Christmas in Florida at this point and I’m looking forward to reuniting with the children. As it turns out, one of my first cousins lives near there and we will hope to meet up with him as well. He is my mother’s nephew and while I remember meeting him from time to time in my life, we didn’t get to see our Kansas cousins as much growing up, like our Pennsylvania cousins on my Dad’s side of the family. But we have recently re-connected and I’m looking forward to that.
Our daughter, Montana loves her job and continues to shine. She has moved into the role of advising us, which is a lovely and natural evolution.
The Kipmeister… well he hasn’t been eating of late. I couldn’t resist getting this shot of him with his little tongue peeking out (click to enlarge). He is 12 years old now and on some great supplements to help his arthritis. But he was born with a hole in his heart and wasn’t supposed to “live as long”. Go figure. One of the symptoms is coughing, which he has been doing lately and then not eating. So today I finally went out and got some MEAT and sure enough, he scarfed it down. So it’s not his appetite apparently, but his food. Anyway, at 12, if he wants Filet Mignon… well you get the idea. He has brought our family 12 glorious years of pure joy and acceptance. My caregiving role never seems to end.
On the news this morning, one of the TV Doctors was ranting about the 9/11 First Responders being denied healthcare coverage for cancer related illness. He mentioned Multiple Myeloma a half a dozen times as he was listing out all their ailments. It is true that MM made the news because so many of the 9/11 responders have contracted it, I think nine at last count. Since the cause is unknown, and one of the theories is environmental toxins, it seems that it is a “pocket” of MM that breaks the mold. I didn’t know what the story was initially, but you know, you hear someone utter the words Multiple Myeloma on the TV and you stop whatever you are doing!
Dave continues to do well, he’s happy, but works too much in my opinion, but not his. We are going on a sailing trip in a couple of weeks with a group of folks I know who have invited us. I can’t wait. My friend who taught me weaving on the knitter’s loom is a licensed captain up to 42′. A Vintner, Todd Taylor, at the Old Sugar Mill that I met, and is friends with them, will be joining us with his wife. His wine is lovely and I’m looking forward to getting to know them better.
My neighbor’s youngest, a boy, age 9 now, decided to take a model of the SR-71 I had given him to put together, to school for show and tell. He’s on year round school and just started in the 4th grade this week. When he told me he was doing this, I started to give him some “facts”. His eyes were wide and he is naturally extremely inquisitive. Evidently, both his mother and I believe he will be an inventor someday. He likes to figure out how things work. I was impressed that he understood the significance of some of the airplane’s facts. I skipped the Cold War part, too complicated. Anyway, I showed him some photos of my Dad suiting up for a flight and the plane refueling in the air and then remembered I had a copies of a magazine, Flight Journal, that had photos and told of Col Buddy Brown’s flameout at Mach 3+ (link to the story online). I gave him that to take, “COOL!” I wrote down some basic impressive facts for him to share with his class. He was pretty stoked when he left and I was too. He came over today to give me a “full report” and it all went very well. He was pretty excited and I was happy to give him something so awesome for his first week back at school. He told me all the kids wanted him to pass around the model he made. I asked him if he did, he said, “yes”. I asked him if he was OK with that and he said, “Um, yeah” – shrug. He was at our house regularly when we moved in. Helping me bake and cook and asking question after question. Making our junk seem like treasure, hunting through boxes. He and Dave are very close and it was extremely hard on them both when they were quarantined from one another through Dave’s treatments. I swear they are from the same galaxy those two. He’s my movie buddy when I want to go see kid’s movies. The other day the two of them were both bugging me with questions when I was busy doing something and I quipped, “you guys need to stop bugging me right now, I’m busy doing something for myself.” I glanced over to see both of them with their mouths open, eyes wide, like the Bobbsey Twins. They then went on to complain to each other about my rudeness, loudly, so I could hear their indignance, with Dave matching the 9 year old. Hilarious.
Today while I was driving to Sac Airport to pick up a friend, I passed by a truck filled to the brim with plum tomatoes and saw some military jets zipping around the airport doing touch and goes in between the airliners landing and taking off. Either that or there were three different planes taking off. I couldn’t quite tell while I was driving in. I loved seeing them low and fast, pulling up, banking hard to the right, making that wonderful sound they make. It reminded me of my childhood at Beale AFB with the T-38’s zipping around. Then this evening sitting on my front porch with a class of Todd’s wine and the cool breeze after a long, hot day, I was pondering that these are just some of the things I love about being back in NorCal. I can’t believe it’s been three years since all this started. But it is, and it’s all OK.
There’s a new, GREAT, Myeloma Support group over on FaceBook. The link is in my Resources page. It’s worth a join if you have a FB account. New members every day.
Pat Killingsworth has made it through his SCT and is at home. He has much recovery to do, but I know he is relieved to have gotten through this part reasonably unscathed. It was something he managed to avoid through novel therapy disease management for a number of years. He was disappointed to have to finally do it, but he has a new perspective on the process and other patients traveling this road in Myelomaville, and I look forward to hearing more about it when he’s feeling better.
Finally, continued prayers for my friends Jan & Bruce, who have been in Little Rock since January! He relapsed after only a year in CR. He was High Risk – Aggressive, and it has come back with a vengeance. Though I think the treatment he has endured has been the real vengeance. He was slated to do the Natural Killer Cells experimental protocol, but he isn’t in shape at the moment to do it – it’s still an open question, but there are reservations, understandably. Jan remains ever vigilant and I try to touch base with her as often as time will allow her.
I hope all is well with all of you. I think of you everyday.
“Life may not be the party we hoped for, but while we are here we might as well dance.” Author Unknown
Thanks Karen! Life interrupted! Yes, that pretty much describes it to a tee. I really like that, as that is how it felt, and lucky for us, we were able to get back to some semblance of a normal life, though you are truly forever changed. I know some people don’t like the “new normal” saying, but it really is. If not, you just can get too resentful about where you are now, and you know me, forever the optimist, I just can’t do that. So “new normal” works for me.
hi lori,
loved reading all the mish-mash posts. they give me hope that life for hugh and i can be as rich and joyous, even though we sometimes still grieve the loss of our old life. and it makes me soooo happy that you, who have given countless hours and days and years with your blog, with your’s and dave’s story, giving so many of us vital information, hope, and inspiration now have the luxury and freedom to tell about how life interrupted can result in new life, fully embraced. and yes, your dear friend did a great job – that logo is awesome! warm hugs, karen
You know I always love to read your MM info, your ramblings, and even your “mish mash”.
I had read the reports about the 9/11 responders and MM – interesting. and sad. Scary when you realize how many more can be affected.
Hope you have a wonderful time, on the water.