July 4, 2005:
While going through chemo a few months 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). Also, if you want off of this distribution list, just email me...
First, the subject line requires explanation. As cancer is now part of the family dialogue, it was only fitting that my 3-year old son 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'll be starting chemotherapy for thymus cancer tomorrow 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 plan 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.
Thanks.
Alan
July 24, 2005:
Dear All:
With cancer survivor Lance Armstrong winning the Tour de France for the 7 th 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).
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 my kids think 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.
Best regards.
Alan
August 16, 2005:
Dear All:
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 look at every year (don't you? I apologize to those August 27 birthdays shared with Paul "Pee Wee Herman" Reubens). 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 my son'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
September 12, 2005:
Dear All:
Thanks for the emails and well wishes for the final chemotherapy that was scheduled for last week. Unfortunately, we got a thrown a bit of a curveball when we went for chemo last Thursday. As we may have mentioned in a prior email, one of the drugs in my protocol can some adverse consequences on the heart muscle. As a result, you're limited in how much you can get over your lifetime (6 doses). In less than 1% of the cases, amounts less than the 6 doses can affect the heart. Well, I'm in the 1% club. The doctors decided that 3 doses was all they wanted me to have. So, on the good side I wasn't knocked out by chemo last Thursday. On the bad side, I get to meet a lot of new doctors (and their tests) and we're trying to sort out what comes next. It probably means there won't be any more chemotherapy for a while and we'll maintain watch on the thymus cancer through repeated CAT scans. As for surgery on the thyroid, we're speaking to doctors later this week.
Its frankly been a bit of a crazy week. Every time we think we have the gameplan worked out, the rules seem to change. Oh well, "s%it happens". Once we figure out the next steps, we'll concentrate on the Stinky Ball. While the attitude remains extremely positive, we do need a vacation.
One last thing. The other day we were watching The Muppet Movie for the 30 th time with the kids. For those that haven't seen the movie, it's the story of a frog, a pig, a bear, an animal and their desire to go to Hollywood and make it big. Well, they do (after surviving the bad guy who wants to make fried frog legs out of Kermit (whew)). At the end of the movie, the entire ensemble (yes, the frog, the pig, the bear, the gonzo and all the other animals) sings: "Life's like a movie, write your own ending, keep believing, keep pretending, do what you've set out to do." Here's wishing you the multitude of opportunities to keep believing and keep pretending...
All the best. We'll write again once we nail down the next version of the gameplan (subject to change without notice).
Alan and Roni
September 29, 2005:
Dear All:
Thanks for all of the phone calls and emails. Finally we have at least a small break in the clouds here (we're superstitious so we won't say "good news"). The heart situation seems to have stabilized, but we'll keep an eye on it (and plenty of yummy medication). But no more chemo for me right now. The first post-chemo CAT scan of my chest came back clean. We'll have to continue having CAT scans every 2-3 months for the foreseeable future as there is a relatively good chance of the thymus cancer recurring at some point down the road. And we have scheduled the surgery to remove the thyroid for November 14/15. That should involve 2-3 days in the hospital and some recovery time at home. So hopefully by Thanksgiving we can go from 5-6 doctors' visits a week to 1-2 a month. That would be a good thing.
The biggest issue that remains is the fatigue. But we imagine that will lessen over time and with some rest. At least the fatigue associated with the Stinky Ball that is. The fatigue associated with the kids may not lessen for at least 20 or so years (although my folks would probably argue with that point given everything over the last several months). As for the hair, well that will take a while.
And now we can start turning our attention to the first annual Stinky Ball. The exact date is still to be determined, but we're aiming for a big bold event towards the latter part of March. We will hold it in New York City and all proceeds will be directed to the Foundation for Thymic Cancer Research ( www.thymic.org ). This organization has been led by Alan Neibauer who I expect will be in attendance. He has done a fabulous job raising awareness for this relatively rare, and often misdiagnosed, form of cancer. The organizing committee may be reaching out to some of you over the next month or two as we finalize an agenda that will include, among other things, good food, good music, good feelings and yes, a silent auction. With respect to the silent auction, we'd really welcome anything you might think appropriate to donate. A much more detailed email will come over the next month or so detailing the event. We really do hope everyone on this thread, along with as many other folks that we all know, choose to join us at this event. Thank you in advance for your support.
That's all for now, its time for a nap.
Best regards.
Alan and Roni
November 9, 2005:
Dear All:
Thank you for the continued thoughts and emails. Things here are progressing and we think there may be light at the end of the tunnel (no, I have no intention of heading towards the light). The heart situation has stabilized and my thymus cancer CAT scans have been clean. The thymus cancer is now a matter of disease management and routine CAT scans will definitely be the norm.
So with the thymus cancer in check, we detour into thyroid cancer land for a few weeks. For those that are unfamiliar, the thyroid is a gland in your neck that controls metabolism (its iodine related). Each year, 22,000 people are diagnosed with various forms of thyroid cancer. Its certainly a more common cancer than is thymus cancer, meaning that the treatment protocols and expected outcomes are far more certain. I will be having surgery this coming Monday to remove the thyroid with the expectation that I'll be back on my feet by Thanksgiving. Somewhere towards the end of December I will be treated with radiation to get rid of the rest of the thyroid tissue (so I'm going to light up like a Christmas tree at the perfect time of the year, sort of like a Radioactive White Christmas). Again, everyone's attitude is good and we're ready to get this behind us and move into 2006 (and 2016, 2026, 2036 and so on).
Now onto information about the first annual Stinky Ball that will most likely be held sometime at the beginning of April 2006 in NYC (mark the date). Just by way of background for those that haven't been on all of my emails thus far, my then 3 year old son named my thymus cancer Stinky Ball when he saw the scars on my chest (believe it or not, my scar looks remarkably like a Mapquest search for directions to my home). Taking the "Ball" concept one step further, a group of friends decided that we should create an annual Stinky Ball to celebrate life in as fun, irreverent and inspirational a manner as possible. The proceeds will benefit Foundation for Thymic Cancer Research ( www.thymic.org ). It is truly going to be a fantastic event. But we need your help with the following...
• We are beginning to pull together names and addresses for purposes of Save the Date Cards and Invitations. Could you please email me with your complete mailing address and phone number. We really want you to attend. In addition, it would be fantastic if you could think of 5-30 friends that you'd like to have invited to this event. We are looking to have at least 300 at the inaugural event and we're absolutely sure its going to be out of this world (ok, I'll stop all the puffery, its going to be more fun than chemo though).
• We are going to begin reaching out to folks to help us with items for the silent auction. Some of you have already been quite generous in offering different items. Thank you. If you have any additional thoughts and/or items to donate, we would be quite grateful. Just an FYI that the Foundation for Thymic Cancer Research is a 501(c)(3) organization and all donations will be tax deductible.
• More information to come about The Stinky Ball in short order!
Lastly, everyone could do us a real favor. Thanksgiving is fast approaching. Trust me that each and every one of you have a tremendous amount to be thankful for. I certainly do as the support we have received from family and friends throughout this process has been truly inspirational (really something else entirely). Thank you. But as you're gobbling up the last of the turkey before turning to the late football game, please take a real moment to look around your table and take stock in what you have and what you've accomplished. Stop and smell the stuffing. It really is something else.
Best regards, thanks and Happy Thanksgiving.
Alan and Roni
February 16, 2006
Dear All:
A very happy Valentine's Day and President's Day to you. We hope that you're enjoying every moment (or as many moments as one can reasonably expect to enjoy). We also hope that you received the Save the Date card for The Stinky Ball. If for some reason you didn't receive it, we have included it at the bottom of this email. Also, if you didn't receive it could you please email your mailing address to us at a_blaustein@hotmail.com . We want to make sure we have proper addresses for the invitations that will be going out in several weeks.
This email is almost all about The Stinky Ball as the health update is thankfully very short. The thyroid cancer is gone thanks to surgery and radiation therapy. The thyroid radiation treatment requires that you quarantine yourself from your family for a few days. In my case the doctors opted to keep me in the hospital as the best measure to avoid the children. For those who think a forced vacation like this might be restful, please keep in mind that they covered my entire hospital room in saran wrap (including the bed, a very comfortable experience) and that my food was left about 10 feet outside my door (and I couldn't leave the room). So I went fishing for hospital food in my hospital gown, not my greatest moment. And I won't even begin to tell you about how exactly they measure your radiation level with the Geiger counter. Also, and this isn't a complaint, but the 5 day pre-radiation diet has no sodium. Water and no sodium rice cakes for everyone! As for the thymus cancer, we're in wait and hopefully not see mode. CAT scans every few months, with the next one scheduled for the beginning of March. So we're getting there. And again, thank you for the continued thoughts...
Now, onto The Stinky Ball. What could be more fun than getting together with friends and family on a Thursday night in May at a New York landmark? Like the Save the Date card says, its all about celebrating what's great in our lives. A few things:
• Invites/Friends: We will be sending out the invites in the next several weeks. Please email us any additional people that you want to invite to the event. We'll try to get invites out to them too. Our goal for the night is to have at least 300 people at The Stinky Ball. Thanks in advance for helping us get to at least twice that amount. As far as a donation is concerned, the tickets to the event will be $175 per person (a significant portion of which will be tax deductible).
• Pictures: We very much want the celebration to include all of your families. Since you probably won't bring the kids, we'd appreciate your emailing or mailing us a picture of you and your loved ones. Please email the pictures to a_blaustein@hotmail.com . This is an important part of the evening, so if you wouldn't mind not forgetting to do this that would be great.
• Evening's Activities: Appetizers, dinner, open bar, music, dancing, silent auction, raffle and a lot of other stuff. We're also quite blessed that several wonderful and well known speakers will join the festivities (although we'll promise you now that the entire speaking portion of the event will not take more than 30 minutes).
• Silent Auction/Raffle: While this is coming together very nicely, we would appreciate your considering whether you have anything to donate to the silent auction or to the raffle. Examples of what we already have committed are baseball tickets, broadway tickets, NYC dinners, several vacations, a day at the spa, a hunting trip with Dick Cheney, artwork, gift certificates galore, DVDs and hopefully some wonderful electronics equipment. Any donation is tax deductible.
• Website: We will send out a quick email when www.stinkyball.org is live (soon). You can hopefully point others to the website for donations or participation.
Once again, thank you all for everything. The biggest thing we could ask is that you come, have a great time and leave the event looking forward to next year. Please tell your friends and family about this. It is all for a very good cause.
Thank you.
- Alan and Roni
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