My name is Alan Blaustein and I was diagnosed with stage IVa thymus cancer on May 18, 2005 (by the way, I also have thyroid cancer). Since that time I have had surgery to remove the thymus and half of my left lung. The disease still exists in my chest cavity, diaphragm and left lung. I am having PAC chemotherapy at the suggestion of Dr. Loehrer. I began treatment at Sloan Kettering on July 5. They’ve worked with Dr. Loehrer in the past and everyone (including Pat) is in agreement that treatment locally with him as an extensive resource is the way to go. Given that I also have thyroid cancer and sarcoid, making sure communication across the doctors (I also have a fabulous pulmonologist) is key. We’ll go for 4 cycles, 1 outpatient day every 3 weeks. Once recovered from chemo, we think we’ll address the thyroid cancer in October through surgery and follow-up radiation.
While going through chemo a few years back, a dear friend of mine created an email newsletter meant for his closest family, friends and colleagues. Since it might be tough for me to regularly keep up via email/phone once we begin chemo tomorrow, I hope that you won’t mind if I steal his idea and send periodic updates as we move through the summer (I promise, no pictures attached). That being said, please keep emailing and calling as it is definitely helping keep me sane (assuming I ever was).
As cancer is now part of the family dialogue, it was only fitting that my son Matthew name my thymus cancer (and the associated scars). He turned and declared “Stinky Ball,” so that’s what we’ve named it. And in support of kicking Stinky Ball’s butt, Roni got us all yellow wristbands that shout “Bring It On!” Attitude is everything and we have plenty of attitude (and some extra wristbands if you want them)…
I started chemotherapy for thymus cancer on July 5 at Sloan Kettering, with 1 long outpatient treatment day every 3 weeks for a total of 12 weeks (meaning the last session will be September 6). Once recovered from chemo, we think we’ll address the thyroid cancer in October through surgery and follow-up radiation. All in all, I’m hoping to be back in form by next season (put me in coach, I’ll be ready to play…). Everybody here has a great attitude in no short part due to the love and support you have shown. A very sincere thank you from Roni, myself and the kids, everything is truly appreciated.
Everyone has asked what they can do. Here’s something I’ve been thinking about. Play some hooky from work this summer, go to a ballgame, grab your husband/wife and go out for dinner or vacation, hug and play with the kids, play that last round of golf, sit outside and enjoy the sunshine (with appropriate sun protection of course), read a book (not business-related), get off your butt and change something in your life that requires changing. Just enjoy more and work less…
Lastly, please save a place on your calendar this fall for the first annual Stinky Ball (date/time and place TBD). Given that thymus cancer is a very rare disease (it barely even fits into the “other” category), I’m planning to work 1,000 times as hard to raise awareness and funds to support future research. Thanks in advance for joining us at this event as I look forward to it being an annual celebration for a long, long time J
With cancer survivor Lance Armstrong winning the Tour de France for the 7th time today, I felt compelled to make a significant guarantee of my own. One day I will once again be able to ride a stationary bike for 20 consecutive minutes on level 1! Whether I feel the wind whipping through my hair while on the stationary bike may be another story (and that has far less to do with the fact that the stationary bike is indoors and is stationary). J
So we’re 25% of the way through the chemotherapy. The first treatment was on July 5 and the second one is scheduled for tomorrow morning (the third will be August 15 and the fourth on September 5). Not much to try to be witty about here, it stunk. At least the first week afterwards did, with significant nausea and fatigue. But weeks two and three were noticeably better, just in time for them to beat me up tomorrow. And yes, my hair is in the process of falling out. While I’m not yet bald, I don’t have enough for a comb over. Not a great look, but Matthew thinks it’s a riot. Oh well, as we said before, attitude is everything. And here I think the score is Attitude 1 – Chemo 0. Hopefully we can go for two in a row and get this crud on the run. Bring It On!
As far as the Stinky Ball is concerned, we’re in the early stages of planning something in the late fall or, if need be, early spring. I’ll have more details in other emails, but if you’d like to learn more about thymus cancer (and why wouldn’t you, it is all the rage), please go to www.thymic.org. There’s a gentleman in New Jersey , Alan Neibauer, who through personal experience has come to understand this disease better than 99% of the doctors on the planet. His efforts have been monumental, but there’s still far more education and research that is needed at both the physician and the patient levels. It is simply amazing how often this cancer has been misdiagnosed as, among other things, lung cancer or adult onset asthma. More to come on the Stinky Ball.
Thank you again for all the love and support in the emails and the phone calls. You don’t know how much it is appreciated.
Oh by the way, as for the significant guarantee I made in the first paragraph, riding the bike isn’t it (although it would be great to have the energy to do it). Spending more time with loved ones, enjoying things a bit more and laughing as much as possible sound like a more solid bet. Its still relatively early in the summer and you can still do for me what I asked before. Please take some time and smell the roses, enjoy the barbeque and cherish the friends and family.
Yesterday was chemo treatment number 3 and I think we all did okay. Well, maybe except for the medical student who came in to pre-screen me and asked 10 times why I had been fatigued over the last few weeks. I guess chemo wasn’t a good enough answer so I told her I had just gotten back from climbing Mr. Everest. I felt bad until she put it into her notes and the oncologist later asked me about it. Ooops. 3 down and 1 to go. Last treatment is September 8 (didn’t want to interrupt the doctors’ Labor Day plans), and then we focus on getting the thyroid removed (sometime in October).
Two general thoughts/wishes I wanted to pass along in this email as the summer winds down and the season of Stinky Ball blows in from the west.
The first relates to the untimely passing of Peter Jennings, the anchorman and senior editor of ABC World News Tonight. As many of you know, Mr. Jennings was diagnosed with advanced lung cancer in April 2005. Despite Peter’s bravest efforts to combat the illness, the insidious disease took Peter’s life on August 7, 2005. As is the case with all cancers, education, along with early and correct detection are the keys to long term survival. One of the reasons Mr. Jennings’ death has had a significant effect on me is that we shared a birthday, July 29. That may not appear relevant at first, but it was one of those things I looked at every year (don’t you? I apologize to those August 27 birthdays shared with Paul “Pee Wee Herman” Reuben). To me he always epitomized class, dignity and integrity in all that he did (as opposed to someone else I shared my birthday with, Benito Mussolini). Even in his final days he didn’t feel the need that the camera focus on himself, but rather, that he wanted the focus to be on surviving and the survivors. In the most distinguished fashion, while laboring under difficult breathing, he appeared for one last time on the ABC World News Tonight set to talk to his audience. While Peter was taken aback by all of the good wishes folks were sending him, he had an unyielding desire to learn from the 10,000,000 cancer survivors. He wanted to shine the lights on their stories, in part to learn and in part to educate others. Learning from others and education were and are the key to dealing with this difficult to understand and difficult to manage disease. For me, inspiration has been drawn from many places, not the least of which from a very good man who died from a very bad illness and who, incidentally, shared my birthday. We must all do more to learn and to educate and to prevent. More on the Stinky Ball efforts later.
The second relates to a poem I’ve known about for a long time but had never spent much time examining until I was in the Sloan-Kettering waiting room yesterday. I’ve taken some liberties with the original text and extracted some portions and replaced them with my own, but hey isn’t that artistic license? Its called “Footprints in the Sand”: “One night I dreamed I was walking along the beach with Roni, my truest friend and companion. Many scenes from my life flashed across the sky; in each scene I noticed footprints in the sand. Sometimes there were two sets of footprints. Other times there were three or four or five sets of footprints including my family, friends and certainly my kids (you wouldn’t notice Josh’s prints though, Roni always has to carry him). But over and over I noticed that during low periods of my life, when I was suffering from anguish, sorrow, defeat or diagnosis I could see only one set of footprints. So I stopped and said to Roni, “You promised me that if we took our vows and if we took our travels and that if we’d share our ups and downs, you would walk with me always. But I noticed that during the most trying periods of my life, there have been only one set of prints in the sand. Why, when I have needed you most, you have not been there for me?” Roni replied, “Silly boy, the times when you have seen only one set of footprints, is when I carried you.” And she has, beyond what anyone could possibly have ever expected from a friend, companion or spouse. Thank you Roni, you are truly something else. And here too I have a wish, that each of you have those pillars of strength in your life that will lift you up as often as you need it. They’re hard to find, but they are truly towers of indestructibility that make life about far more than survival.
On to the Stinky Ball. I have a very good friend of mine who, when she returns from a well deserved vacation in Hawaii , is going to begin helping me plan it. We can’t decide whether to do it in November or in early March, so stay tuned. We might actually do two events, one informal one in November and another more formal event together with Thymic.org in March. Stay tuned, we’ll figure it out.
Again, what can we say. Thank you for the thoughts, the prayers, the calls, the emails. Its been far more than we would have ever expected and far greater appreciated than I think we’ve ably communicated. Thank you for now and we’ll trade hugs/kisses at the Stinky Ball…
Love to all. 3 down, 1 to go. Run Stinky Ball Run…
Alan and Roni