The Flow

I’ve always been a big picture kind of person, I like to know the past and present, so I can see the likely outcome of the future. I can do detail stuff too, after all you need that basic knowledge to see the big picture. But it is not something I need to focus on. This applies to work, life, and right now my health. And right now I am in detail mode, cuz things did not go according to my plan. I was supposed to be healthy now. Some things you just cannot control, or choose to ignore. I hope I do not distort the “Flow” as I try to explain this, but I can control most of my body actions and my mind (…most of the time), that is the detail mode, where you have to be in the present and focused. It’s the “some things” you cannot control that cause the most challenges, because of how you perceive and interpret the world. Experience plays a big part of seeing the big picture. It’s why some old people are wise, they have seen a lot in their lives, and focused on the details when it was important to.

Kelly-Slater-barrel-ridingGreat surfers are like that… yes, back to the surfing analogy… Knowing the ocean, reef, weather, etc is part of the big picture, as is wave selection. Will the wave wall up or crumble in front of you? Will the foam ball push you out with the spit or eat you up? All big picture decisions. (Please do not misconstrue that I have ever been barreled before, but I watch a lot of surfing). The detail is in your body movements (too many to describe here). But the point is that the control you do have is a big part of the Flow. Will dragging your hand slow you just the right amount to ride the wave through?

Choosing the Right Wave

The last two months have not been fun. As I said before GVHD sucks. We (my doctor and medical team and myself) have changed meds, added a couple, and I have learned to be very careful about what I eat. I have a plan of action that I can choose to use. Pain and nausea meds work, but fuck you up. There was a time that would have been OK… not now. Wednesday, we went to see NP Stephanie. It was a good conversation, because big picture-wise I can see what my doctor and medical team are trying to do. It’s been a while since that has been the case.

Back to Wednesday, what (of course) was a routine visit of 2 hours became a whole day. And scheduled a not so minor surgery for Jan. 24th, as well as a BM Biopsy to see what is going on in the old bones. Because although we have my GVHD “under control” (right?!). But my platelet count has once again dropped from the mid 60s to the mid 30s. I’m not worried, I don’t think my Doc and medical team are worried… last biopsy I had 100% donor cells. But chromosome 7 mutations are a bitch to get rid of. We’ll find out a lot when we see my Doc on Feb. 3rd, and discuss the results of the biopsy. We have a couple of paths to choose from and I need to research them carefully. Unfortunately, this is a case where it is a matter of life, and/or the quality of my life for the next few years.

Note from Terri:

We have yet to have a normal, “get in and get out” doctor’s appointment. They all seem to turn into an all day affair. Each appointment runs longer than anyone expects and no one is on time. So Mark’s pulmonary function test went long and ran into his lab (blood work) appointment. The lab appointment started late and ran long because they noticed an issue with one of the valves on his chest catheter. So we get to the actual medical appointment with Stephanie late. I guess no worries, she is running late too. She sat down with us and we were able to have a nice long conversation (which is a good thing). She looked at Mark’s catheter and said it needed to be removed, that they couldn’t just “fix” the broken valve. So when we were done with her we went down to Intervention Radiology to have the catheter removed. So where we should have left St. Louis by 1pm, we actually left at 4pm. And that seems to be the way it usually goes. For the biopsy day appointment, it has different appointments scheduled for the entire day beginning at 7am. Maybe we will get out of there by midnight. It’s blood tests, platelet infusion, port or catheter replaced, biopsy. Party in St, Louis if anyone wants to join us. Mark and I decided a few weeks ago, that sometimes you just have to laugh at what life throws at you. Because what else are you going to do? It’s not always easy. But we try.

Update on the Present

So in a very related way, I mentioned a few months back my Mom has leukemia (ALL), at 73 she has chosen not to go down the chemo path (can you blame her?), and tried out a steroid approach. Steroids are a temporary solution (I know from personal experience, as well as the research I have done). Although I cannot go to California to be with her, I know she had a wonderful Thanksgiving, Birthday, and Christmas. She chose wisely, IMHO. She saw those waves on the horizon, selected the perfect wave and rode it magnificently. Her cancer has since spread and the family waits, holds her hand, and gives her the love she needs.

mother and sonMom, I love you and am there with you in spirit if not physically.

Aloha makuahine.

~ Mark


  1. Skyping and chaos

    We finally tried to Skype my Mom yesterday… It was great to feel the love and atmosphere of the room. HOWEVER… We had tech difficulties, tons of background noise, and overall chaos.We saw my Mom for less than 5 minutes, and are hoping for a more peaceful setting on our next attempt.

    • she never got to read your blog or see the beautiful image….but at least the skype went through at last!!