We're coming up on two weeks in Little Rock. Never in my wildest dreams........I resist any temptation to question, but rather just try to stay open to the fact that I am here now. But life does manage to throw some unexpected curves to us on occasion. My brother Mike left this morning, having driven up from Tyler, TX for the weekend to give Julia and Susan a break from the long days at the clinic/hospital. Nice of him to spend his weekend that way. The effects of the chemo continue to slow me down. Even though I've officially been off the chemo bag since Wednesday, apparently the effects take some 4 to 6 days to really show themselves. Mostly I get hit with these waves of fatigue and exhaustion, but other than that, managing it OK. I started growth shots on Thursday that will continue until I've produced enough new stem cells to harvest them for the upcoming transplant. That could happen as early as next weekend. The days at the clinic are mind numbing. So much waiting. We had a 10:30 a.m. appt. with the Dr. on Friday morning. Saw him at 3:30 p.m., having spent the 5 hours in the waiting room and the examination room--waiting. The problem is one created by just too many patients and not enough nursing staff or doctors. But to have all these patients sick with cancer, sitting and waiting for long hours is hard to take. My brother Mike questioned a few people this weekend about this problem, but, although everyone is aware, no solutions seem to be presenting themselves. It's worst when we have to see the doctor---so maybe we just avoid that!!! Not a good solution in my mind. We didn't even get to see Dr. Barlogie on Friday, after 5 hours of waiting, but once Susan and my anger passed, we calmed down and felt pretty good about the doctor we saw, the answers we received to our questions, and the plan going forward. There continues to be no question in my mind that this is the finest myeloma treatment center in the country. The data that they produce each day on each patient is so impressive. This doctor pulled up graphs in the exam room showing the reduction in my IGGs (yes, they're going down), and other pertinent chemistry---all from lab work done that morning. But the waiting does present its challenges for the patient. Days are long, activity is slow, excitement is nil. This is Arkansas!
We love you all,
Dan
Subscribe to:
Post Comments (Atom)
4 comments:
Hi Dan,
you truly are facing the intensive cure, but as long as you complain only about waiting for hours and hours, I guess this is pretty good. Especially if the side effect of tiredness is showing up, at least you can sit still, and maybe even take some naps ???
I'm back from Vienna again, finished finally the Hypo meetings with Dr. Howorka and her group. The last session of course, was the best, and the extremest, because one participant brought a video, of a Koma, he just had a week ago. It made me cry, because it was so similar to the one I had. And remembering the few moments I was "awake", seeing what the body does to you, while not having any controll, thinking of how Elena had to assist me, ... well I started crying, I almost couldn't take it, the Koma was there with me, the memories of it, and the Dr. voice: YOU ARE THE GROUP that will have this again and again, was scary.
And sure enough, tonight I had a 28 Hypo, two hours after I was up to 436. It just never ends.
All I want to say with this is, that we have to continue to fight our diseases, there is no rest !
So all I can wish you, is that nothing worse than waiting for hours and hours will happen to you, but we all know that your path is tougher than only waiting.
So try to continue your already shown strength, we count on you.
You started your first steps towards remission, but Mt. Everest is still infront of you.
Love you,
I
Dear Dan,
Hang in there Dan, we are with you. Bises, Sigun.
Dan -
I am a 40-year old male otherwise healthy, diagnosed with MM in November. I spent the entire week in Little Rock (we live in Los Angeles) being poked, prodded, drained of all my blood, etc. Surprised we didn't run into you in the waiting room, although perhaps we did.
I would LOVE to compare notes with you as I am going to decide this week how much of Total Therapy to do in Arkansas and how much in Los Angeles. My hope is to do induction in Little Rock and the transplants at City of Hope in Los Angeles with a close friend of Bart's, but I'm not sure Bart will go for it.
We're both members of a fraternity we wish we didn't join, but I am confident that we will be cured with this protocol. In my 10 weeks of research it has already gone from an outlier to something that even docs that are more "novel drug" guys than "transplant guys" are saying makes sense for many people.
You can email me at artisannvandyk at earthlink.net if you like. I also maintain a blog at www.nvdmyeloma.blogspot.com
Best wishes and good luck with the rest of induction!
Warm regards,
Nick van Dyk
Dear Dan,
It appears that your acclimation to Arkansas is a work in progress. I have a recurring fantasy about moving to some Deep Nowhere town, among them Oklahoma City,El Paso and Tuba City. The cost of living would be low so that we could afford daily massages and internet-ordered fancy foods. We would have the New York Times on line. Perhaps meet an eccentric genius hiding out from life who would make it all worthwhile. I don't know why this happens to me, but I know that it is attached to my deep sense of dread for every place but very big cities with subways and taxis.
So what is the difference between living in Little Rock, say, and living in a monastery? Both would be quiet with not much to do but pray, but I reckon that the monastery can seem much more attractive. The atmosphere is spiritual, while Little Rock's is suffused with the presence of the absence of the Clintons, something I don't think I would like to experience.
If you have the time, I would love to read something from you, Susan or Julia on what unexpected stuff you have encountered there. I have a feeling, somehow, that it is going to get better, and then before you know it you will be home.
Love to all,
Joe
Post a Comment