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.
Wednesday, September 30, 2009
Friday, September 25, 2009
Light the Night Update
A big thank you to everyone who has donated to Light the Night once again this year. We have raised more than $5,000 and the last week is always when the donations really start flowing. Are all my friends procrastinators just like me? So, if you are planning on donating now is the time. The Walk is one week away: Thursday, October 1. See my website for details: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
A few logistics: The party at Darin and Liz Schanker's, sponsored by Bachus & Schanker, LLC, (www.coloradolaw.net) is a great event, with drinks, barbecue and lots of good cheer. You won't want to miss it. And they want to be sure to have enough for everyone, so if you are planning on attending the party, please RSVP now to Linda Snyder at marketing@coloradolaw.net. We'll walk to the park from there for the Light the Night. The party starts at 4:30 p.m.; see website above for their address.
If you can't make the party, we will meet you at the tent with the banner: Dan's Team.
This Walk is a lot of fun, especially with a good crowd, so make time for yourself and to support this cause. See you there.
As always, we are grateful for all your love and support,
Dan
A few logistics: The party at Darin and Liz Schanker's, sponsored by Bachus & Schanker, LLC, (www.coloradolaw.net) is a great event, with drinks, barbecue and lots of good cheer. You won't want to miss it. And they want to be sure to have enough for everyone, so if you are planning on attending the party, please RSVP now to Linda Snyder at marketing@coloradolaw.net. We'll walk to the park from there for the Light the Night. The party starts at 4:30 p.m.; see website above for their address.
If you can't make the party, we will meet you at the tent with the banner: Dan's Team.
This Walk is a lot of fun, especially with a good crowd, so make time for yourself and to support this cause. See you there.
As always, we are grateful for all your love and support,
Dan
Tuesday, September 22, 2009
Hope for a Clinical Trial
Ah, there's nothing better for the soul than a beach vacation. We returned on Sunday from a week on Sanibel Island with our friends, the Dowells. Inactivity would be the best way to describe my time in the sun. Rifkin relented just a bit and gave me permission to swim for a short time in the sun. So every day I took a swim in the Gulf. Otherwise, I hid under the trees or in the condo, took daily naps and ate seafood. We had a fantastic, relaxing time; only to have to face the blood draw and meeting with Rifkin on Monday.
On that front things remain about the same. White count at 2.9; hematocrit at 28; hemoglobin at 9.9; platelets at 108 and IGGs at 3700. Rifkin has spoken with the principal investigator at the Mayo Clinic in Scottsdale, AZ about my participation in the pomalidomide and/or carfilzomib clinical trial. Portions of my records will be sent there, as well as to M.D. Anderson in Houston, to determine if I qualify. If so, we then have to investigate whether I will need to be on site for the trial, or part of it, or whether Rifkin can oversee my participation here in Denver. He thinks it unlikely I'll be able to stay in Denver. We should learn more at our next visit in 10 days. Either way, it seems to me to be an improvement over Little Rock. Susan's brother lives in Houston so that would be the preferred site for us if I have to stay for any period of time.
The prospect of spending another winter fully engaged "in treatment" is not the most appealing thought. But, I don't think this will be even comparable to the aggressive treatment I underwent in Little Rock. I've read the blog of at least one patient who has been in the pomalidomide trial at Mayo in Rochester for over a year. I think he now goes in for testing only once a month. Could I be so lucky? I know we have to do something, as my energy is waning, whether due to the cancer, the steroids, or something else, no one knows. But I do feel it's time for some action. Anyway, I guess I continue to be the guinea pig for the comparison of the two philosophies: blast it or control it. Blast it didn't work, so let's control it. Keep those new drugs coming. To support that cause go to my Light the Night site: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
As I felt my mood start to dip with the thought of another round of treatment in some foreign state (I love Colorado and hate to leave), Susan confidently told me to cheer up, we'll get through this, and she'll go with me wherever I need to go. What would I do without her?
And a brief update on the girls: Julia's paid summer internship with the Colorado Dept. of Health has turned into a full time position. She has already begun work as an Environmental Health Specialist and will be doing health inspections at restaurants, day care facilities, condemned residences, as well as other public health duties. She is quite excited. Although Julia was ready to move into her own apartment if she got this job, given the probability that Susan and I will be taking up residence in either Houston or Scottsdale, she has delayed those plans. I guess it's OK to live in the parents' house so long as the parents aren't there. Catherine began work for Yahoo! this week and has also managed to find a studio apartment in NYC (probably the size of a closet!). She says she loves the city and is also very excited about her new job. Susan is already plotting when she can go visit.
and that's about all for now. I'll report once we see Rifkin in 10 days and we know whether we're going back on the road.
Love to all,
Dan
On that front things remain about the same. White count at 2.9; hematocrit at 28; hemoglobin at 9.9; platelets at 108 and IGGs at 3700. Rifkin has spoken with the principal investigator at the Mayo Clinic in Scottsdale, AZ about my participation in the pomalidomide and/or carfilzomib clinical trial. Portions of my records will be sent there, as well as to M.D. Anderson in Houston, to determine if I qualify. If so, we then have to investigate whether I will need to be on site for the trial, or part of it, or whether Rifkin can oversee my participation here in Denver. He thinks it unlikely I'll be able to stay in Denver. We should learn more at our next visit in 10 days. Either way, it seems to me to be an improvement over Little Rock. Susan's brother lives in Houston so that would be the preferred site for us if I have to stay for any period of time.
The prospect of spending another winter fully engaged "in treatment" is not the most appealing thought. But, I don't think this will be even comparable to the aggressive treatment I underwent in Little Rock. I've read the blog of at least one patient who has been in the pomalidomide trial at Mayo in Rochester for over a year. I think he now goes in for testing only once a month. Could I be so lucky? I know we have to do something, as my energy is waning, whether due to the cancer, the steroids, or something else, no one knows. But I do feel it's time for some action. Anyway, I guess I continue to be the guinea pig for the comparison of the two philosophies: blast it or control it. Blast it didn't work, so let's control it. Keep those new drugs coming. To support that cause go to my Light the Night site: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
As I felt my mood start to dip with the thought of another round of treatment in some foreign state (I love Colorado and hate to leave), Susan confidently told me to cheer up, we'll get through this, and she'll go with me wherever I need to go. What would I do without her?
And a brief update on the girls: Julia's paid summer internship with the Colorado Dept. of Health has turned into a full time position. She has already begun work as an Environmental Health Specialist and will be doing health inspections at restaurants, day care facilities, condemned residences, as well as other public health duties. She is quite excited. Although Julia was ready to move into her own apartment if she got this job, given the probability that Susan and I will be taking up residence in either Houston or Scottsdale, she has delayed those plans. I guess it's OK to live in the parents' house so long as the parents aren't there. Catherine began work for Yahoo! this week and has also managed to find a studio apartment in NYC (probably the size of a closet!). She says she loves the city and is also very excited about her new job. Susan is already plotting when she can go visit.
and that's about all for now. I'll report once we see Rifkin in 10 days and we know whether we're going back on the road.
Love to all,
Dan
Wednesday, September 09, 2009
Is Relaxation a Cure?
Rifkin's words of encouragement today: "you could live with this," meaning it would probably be alright if my numbers held steady where they are. I guess that means we're continuing to have some stability. The white count has dropped a bit (just before flu season--not so good), but otherwise things look OK (haven't gotten IGGs checked in a couple of weeks, but we're assuming they are also holding). But since this myeloma doesn't hold still forever, Rifkin is continuing to investigate clinical trials that might be available. So far no responses to his inquiries but he will be at a meeting this weekend where he can ask some of the people who are running the trials, so we should know something next time I see him.
My approach to the "your disease is quite angry" has been to seek relaxation with the notion that perhaps I can calm this down from the inside out, since the chemo attack from the outside doesn't seem to have worked. In that vein, I have increased my daily meditation to the point that Susan sometimes wonders if I'm ever coming up out of the basement. She and I also went on a little retreat, renting a cabin in the woods at a meditation/yoga retreat center. Those few days allowed us to forget this cloud hanging over us, at least for a little while. And, Rifkin gave me the green light to accept an invitation from our friends, the Dowells, to join them for a week's respite in Florida. Rifkin was a bit nervous about my getting on an airplane with all this H1N1 flu stuff in the news, but thinks its early enough in the flu season that I'll be OK. To be safe, he prescribed some Tamiflu for the trip. We'll keep our fingers crossed, as last Feb., even though I was on Tamiflu, I ended up in the hospital for 8 days with the flu. Other precautions: I am to stay out of the sun, so I'll either be sitting on the balcony watching the surf or fully clothed with my UV rated long sleeve shirt and pants under the umbrella. Not quite the beach vacation I was dreaming of, but it will provide a break and a chance to get away from "it". We are, of course, very appreciative of the Dowells for their generosity. Susan is especially excited to go since she craves any semblance of normal life. The twice weekly trips to the cancer center and the chronic watching (of me) and the waiting to hear numbers takes it toll. I know she would love to return to our past life, intense,but a life not fraught with the fears and physical limitations of this disease. There is no normalcy in our lives, but we can pretend for a week here or there. Those times become such gifts as they only come during the recovery periods between chemo treatments. Once I start another chemo regime, relaxation becomes very elusive.
Catherine left today for a new job in New York City. She will be working for Yahoo! as an optimization consultant for their on line marketing division. And no, I don't know what that means, but it sounds exciting, right? Anyway, she is quite excited about the job, even though NYC can be a bit intimidating. Susan's cousin, Arlene (who is an avid reader of this blog) and her husband, Jim, picked Cate up at JFK airport today and she will be staying with them for a few days, just north of NYC, while she goes into the city during the day looking for an apartment. It sounds like quite an adventure and we are very proud of her for landing this job and orchestrating a move to NYC (and yes, we have stacks of boxes of her "stuff" in our garage). Of course Susan is thrilled at the prospect of having an apartment available in NYC, having lived in the city for 15 years before I dragged her out to Colorado. I suspect Susan will be spending a lot more time there. We will likely soon be empty nesters, as Julia is hoping to land a full time job with the Colorado Dept. of Health, and if she succeeds, she wants to move into her own apartment. Can we handle the quiet?
The Leukemia and Lymphoma Society's annual Light the Night Walk will be taking place in Denver on October 1. Donations can be made on line at: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
I am reluctant to do any active fund raising this year in light of the tremendous support we've received from so many people this year. So, no push this year. If you want to contribute, this link should get you there.
Best to all,
Dan
My approach to the "your disease is quite angry" has been to seek relaxation with the notion that perhaps I can calm this down from the inside out, since the chemo attack from the outside doesn't seem to have worked. In that vein, I have increased my daily meditation to the point that Susan sometimes wonders if I'm ever coming up out of the basement. She and I also went on a little retreat, renting a cabin in the woods at a meditation/yoga retreat center. Those few days allowed us to forget this cloud hanging over us, at least for a little while. And, Rifkin gave me the green light to accept an invitation from our friends, the Dowells, to join them for a week's respite in Florida. Rifkin was a bit nervous about my getting on an airplane with all this H1N1 flu stuff in the news, but thinks its early enough in the flu season that I'll be OK. To be safe, he prescribed some Tamiflu for the trip. We'll keep our fingers crossed, as last Feb., even though I was on Tamiflu, I ended up in the hospital for 8 days with the flu. Other precautions: I am to stay out of the sun, so I'll either be sitting on the balcony watching the surf or fully clothed with my UV rated long sleeve shirt and pants under the umbrella. Not quite the beach vacation I was dreaming of, but it will provide a break and a chance to get away from "it". We are, of course, very appreciative of the Dowells for their generosity. Susan is especially excited to go since she craves any semblance of normal life. The twice weekly trips to the cancer center and the chronic watching (of me) and the waiting to hear numbers takes it toll. I know she would love to return to our past life, intense,but a life not fraught with the fears and physical limitations of this disease. There is no normalcy in our lives, but we can pretend for a week here or there. Those times become such gifts as they only come during the recovery periods between chemo treatments. Once I start another chemo regime, relaxation becomes very elusive.
Catherine left today for a new job in New York City. She will be working for Yahoo! as an optimization consultant for their on line marketing division. And no, I don't know what that means, but it sounds exciting, right? Anyway, she is quite excited about the job, even though NYC can be a bit intimidating. Susan's cousin, Arlene (who is an avid reader of this blog) and her husband, Jim, picked Cate up at JFK airport today and she will be staying with them for a few days, just north of NYC, while she goes into the city during the day looking for an apartment. It sounds like quite an adventure and we are very proud of her for landing this job and orchestrating a move to NYC (and yes, we have stacks of boxes of her "stuff" in our garage). Of course Susan is thrilled at the prospect of having an apartment available in NYC, having lived in the city for 15 years before I dragged her out to Colorado. I suspect Susan will be spending a lot more time there. We will likely soon be empty nesters, as Julia is hoping to land a full time job with the Colorado Dept. of Health, and if she succeeds, she wants to move into her own apartment. Can we handle the quiet?
The Leukemia and Lymphoma Society's annual Light the Night Walk will be taking place in Denver on October 1. Donations can be made on line at: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
I am reluctant to do any active fund raising this year in light of the tremendous support we've received from so many people this year. So, no push this year. If you want to contribute, this link should get you there.
Best to all,
Dan
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