Wednesday, September 30, 2009

Our Amazing Friends/ With Addendum

As of this moment you, my friends, have donated $9970.00 to the 2009 Light the Night. Thank you for your generosity. I think the total for Dan's Team over the past 3 years is now close to $60,000. The walk is this evening and although the weather here in Denver is expected to be cool and rainy (please no snow), I hope we'll get close to the goal of 100 people walking for Dan's Team. Thank you, everyone, for supporting the fight against blood cancers.

The meeting today with Rifkin was promising in terms of the number of new drugs that are in various stages of development. Although pomalidomide and carfilzomib are furthest along, there are many others that we should see in the next 5 years or so. The research and development of these new drugs is greatly aided by the Leukemia and Lymphoma Society's financial support from its Light the Night walks around the country.

No news on the eligibility for the clinical trials yet. So Rifkin invited me to email Mayo and M.D. Anderson and see if I could get their attention. Yeh, I know how to be a pest when I want to, so I suspect within the next few weeks we'll know something definitive. In the meantime, my numbers continue to hold. In fact, the white count, hematocrit and hemoglobin, and platelets moved up a notch since last visit (still below normal, but holding). There appears to be some discrepancy between the IGGs measured here and in Little Rock (ones here are higher--hovering around 4700), but holding there. Rifkin said he has a few patients whose IGGs have held around 5000 for 15 years. I'll take that.

I still have issues with my back and my feet and will be going back to the orthopedic surgeon as it feels like something is amiss again in the lower back. In addition to being numb my feet also spontaneously cramp up, with the toes curling under and locking up. Rifkin attributes this to the prednisone and said, not much more I can do about it (I already take a vitamin B complex, vit. E, L Glutamine and magnesium for the cramping, but they don't help much). Perhaps, after all these toxins I am morphing into a hobbit. That would seem to fit with the loss of height, the expanding wasteline, etc. But all in all I'm certainly doing better than mid May when we returned to Denver. Quite honestly, I don't feel like I'm on the verge of death anymore. Rifkin has done a wonderful job of bringing me back from the abyss through his very patient, less toxic approach to my disease.

The management of the anxiety that both Susan and I felt upon our return to Denver has been quite a challenge. We continue to learn to let go of those fears. I am at a place today, thanks in large part to my meditation practices, that I would describe as almost being incapable of worry. We have been forced to face and accept the uncertainty of our future and as a result, have learned to find great joy in most days. Whatever time we have left we will live to the fullest. A good prescription even without a cancer diagnosis. We treasure our family and friendships and trust that things are as they are supposed to be. It does seem that things work out when we stop trying to control the outcomes. The worry over whether my bone marrow will recover, will I be able to get more treatment or qualify for a clinical trial, will my angry disease calm down, is enough to consume you if you allow it. Fortunately, we quickly pulled ourselves out of that muck, and Susan always gently puts on the brakes when my mind wanders there.
So, today will undoubtedly be a good day as we Light the Night. Thank you again for everything.

With much love and gratitude,

Dan

Addendum: Spoke with M.D. Anderson today and they are interested in interviewing me and considering me for one of their clinical trials. I will likely have to travel to Houston soon for the intake. Dan's Team has exceeded its fundraising goal, thanks to you. We are now over $11,000 in donations. Thank you so much.

6 comments:

Patricia Michael Melnice said...

Dan, I've never been so far away yet felt so close! I am behind you all the way and continue to keep you in my thoughts and prayers . . . you and Suse, Cate and Julia too. I love you all dearly.
Patty

sigun said...

Dear Dan,

Bravo for the amount raised. We were walking with the Dan Team in our thoughts! Hope you did not get rained on. Bises, Sigun.

Lori Puente said...

Hi Don, My husband has MM, dx 6/08. We have just finished our treatment in LR. He is low risk and at the moment is doing very well and optimistic. I wanted to mention what I do when my fears and dread creep in. I call it guerilla warfare. When I feel it coming on, I grab my metaphoric oozie, go in and confront it head on, shoot the crap out of it and get out quick! My success in calming my fears has been to face them head on, "what would I do?..." Well the truth is, I'm a survivor and I will deal with what comes. (a caregiver's point of view of course) Then... I mock up how I want it to go from the miraculous to the "I'm Ok with that" and everything in between. Then... I let it all go. It has brought me some sense of serenity and well being. When I have a "bad thought" or scary thought after that, I use it as a "reminder" to mock up again, how I want it to go. Hang in there! You are both courageous and brave.

Best, Lori

Card Shark said...

Thought you should know that "Brother Ted" left a very distasteful comment of Nick's blog. Rather hurtful to Nick and those caring for him, I'm sure.

Nick said...

Dan -

Congratulations on that tremendous job of grassroots fundraising which will surely be a meaningful contribution to research!

Thank you also for your post on my blog today. I'm sure the comments came from being distraught over your experience in Arkansas, which was much less positive than mine, and while the initial comment stung, he can certainly be forgiven since it's coming from his love and concern for you, which I of course share.

Keep on keepin' on and I'm keeping my fingers crossed for Carfilzomib and Pomalidomide, both of which have shown remarkable promise for disease that doesn't respond to Velcade and Revlimid. Don't forget there's also the HDAC-inhibitor and heat shock protein trials going on through Dana Farber as well!

Give Susan a big hug from us!

All the best,

Nick

Sandy said...

Dan - I have a relative with MM, so I follow a few blogs for that reason. But when I read about the cramping and the toes curling, I wanted to say that I don't have MM and I do have THAT activity. My solution is to increase my potassium naturally - usually with bananas that are not entirely ripe yet, sort of on the green side. One or two of those a week seems to keep that spasm of toe-twisting at bay... hope it works for you!