SAME TIME TOMORROW

The name of this blog

Posted in Uncategorized by Sean Holton on August 20, 2009

Temodar-photo

Today is my first day of chemotherapy in conjunction with radiation therapy.

I called this blog “Same Time Tomorrow” because the therapy involves taking a chemo pill at home and then reporting to my radiation machine at MD Anderson Cancer Center in Orlando at exactly the same time each day. I get a break from radiation on weekends, but I’ll take the 140 mg temozolomide capsule called Temodar every day for 42 days. That means the finish line for me will be on Wednesday September 30.

I will describe more details of radiation after I’ve gone through it for the first time. But I’ve already learned something about the Temodar pill by talking to my doctors and checking the website of the medicine’s manufacturer (Schering). It says: “TEMODAR® acts directly on the DNA in the cells in your body. DNA controls the growth of normal cells as well as brain tumor cells. Because these tumor cells grow much faster than normal cells, they are affected to a much greater extent by the effects of TEMODAR® Capsules.” That means temozolomide will be the infantry in my battle to kill the remnants of my brain cancer. The radiation will be the air force. If it works right, it’s supposed to be like medical shock and awe. Let’s just hope Dick Cheney and Donald Rumsfeld are nowhere near the controls.

The side effects I can expect from this regime will be accumulating fatigue from both elements of it, some scorching on my head from the radiation as well as the possibility of some nausea from the pills. I’m not too worried about nausea, though. Only a relatively small percentage of patients are said actually to get sick from the pills, and I’ve got a pretty good cast-iron stomach. Since Ronald Reagan left office, I’ve only thrown up once. That was during a trip to California in August 2001, about a week or so after George W. Bush lost the top-secret memo entitled “Bin Laden Determined To Strike Inside The U.S.” in a stack of Field & Stream magazines at his Texas ranch. So unless naked photos of U.S. Sen. Charles Grassley (R-Iowa) surface on the Internet sometime during the upcoming health-care reform debate, I should be safe. But even if that happens, I’ve got backup anti-nausea pills.

Okay, enough politics. Let’s talk about health-care reform (ha, ha). Check out the price tag on these Temodar pills. I casually plugged them into the website of my insurance company when I was filling the prescription a couple weeks ago, and learned that the actual cash price of the 42 pills is $12,000. Still, compared to some of the intravenous chemo drugs used to treat other forms of cancer, Temodar is pretty cheap. Thank God I’m covered, except for a small copayment. And at about $286 a pop, as my buddy John Huff said, I’d better not be dropping one of those pills down the toilet.

I understand some of the forces at work here: Schering obviously did years and years of R&D to develop Temodar, spending gazillions of dollars to create an effective medicine in fighting deadly glioblastoma multiforme brain tumors such as mine. And in the few years since it has become the standard of treatment, the drug is showing very promising results. I don’ t know how long their patent on the drug will last, but I’m sure they only have a fairly short window of exclusivity to make all that money back plus make a profit for their shareholders. After that, you’ll probably be able to buy 42 temozolomide capsules from the new ShamWow guy for $9.99 by dialing some toll-free number during late-night M*A*S*H re-runs. And they’ll even throw in a free towel. The ShamWow people recovered their R&D costs years ago, so they’ll be cool with that.

I’m extremely fortunate that I have maintained my insurance coverage, and I realize that the past few weeks and the next couple months alone will have made all those years of paying premiums worthwhile. I’ve had good jobs with good benefits plans over those years. If I’d blown off just one COBRA payment after I left my old newspaper job and started up my own company (which is eligible for participation in so-called “one-person group” health plans), I’d be screwed. It would be hard as hell to get individual insurance coverage as a basic freelancer. Also, I would have had no “creditable continuous coverage.” So even joining a good group health plan with a new employer would not have made me eligible for coverage of this “pre-existing condition” for many, many months.

As it happens, my COBRA coverage runs out October 12. My lucky timing is compounded by the fact that August is the one-month window each year that “one-person groups” like mine are allowed to enroll in plans that bring together larger pools of insurees. I was working toward that goal with a company financial advisor months and months ago, long before any of this cancer crap came up. And I expect to be accepted into the new plan, with new coverage to commence Oct. 1. So I’m very grateful.

I can’t imagine how someone facing a fight like this could do it without insurance. It seems to me that when medical knowledge and treatment are available, having a good job or not shouldn’t make the difference between life and death. That said, until health-care costs overall are brought under control, I’m not sure how cases like mine logically fit into any actuarial model. So those folks in Washington better quit namby-pambying around and get this whole thing figured out, whatever it takes.

And put your clothes back on, Chuck Grassley. You don’t look good naked.

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35 Responses

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  1. RebelliousRenee said, on August 20, 2009 at 10:14 am

    YES!…. 3 cheers for ShamWow…. :0)

    my thoughts and prayers are with you today as you start your chemo…

    healthcare reform?….. I think we need a whole new guberment….

  2. Mike Oliver said, on August 20, 2009 at 10:53 am

    Hi Sean,
    Thoughts and prayers beamed your way from the West Coast.
    You mentioned your only throw-up experience as during a trip to
    California in 2001. Hope that wasn’t after our night of revelry
    at the IRE convention in SF, capped by a Glionna-led visit to the Buena Vista
    Cafe where we slurped Irish Coffees.
    Whiskey and whipped cream, ouch!

  3. Beverley said, on August 20, 2009 at 12:09 pm

    Hi, my sister in law went through what you are facing now several years ago. The treatment she went through was exhausting and felt very invasive she said. She too had the tumor removed and the radio and chemotherapy. They made her a special mask to wear when the radiotherapy was taking place. She had recently moved when all this happened from the UK to New Zealand and so only had her immediate family around her. At one point things didn’t look good and so family from here in the UK went to NZ to see her. We were very worried, then she turned a corner. This time last year she flew by herself to the UK to visit for a month. She did lose most of her eyesight initially, but it has been slowly returning and I realised when she visited she can now see very well indeed! One thing we did realise with her was that the medication played havoc with her moods, often making her very cranky and impatient. She was also very angry alot of the time. We had to tell ourselves whenever we were on the receiving end of a blasting over the telephone that it was the drugs talking not her! I cannot imagine the situation where you have to rely on insurance to get you through. What happens if you don’t have the insurance? Here in the UK it is all taken care of. My son in law is waiting for a kidney transplant and they have told him they are going to provide him with a small briefcase sized dialysis machine he can use at home, and he will be able to travel with until a donor is found. He has bucket loads of medication and its all paid for, plus he gets a disability allowance to help him financially. I think people here in the UK and elsewhere can be very critical of the UK health system, but it has been good to us and our family.

    Take care and every good wish to you for a quick return to health. Beverley, UK

  4. Karen Elaine Thomas said, on August 20, 2009 at 1:13 pm

    Hi Sean,
    I am a five year stage IV breast cancer survivor (two surgeries, chemo and radiation with ongoing hormone therapy) and your statement “Learn to stop worrying and just have brain cancer instead” really hit home with me. In this journey you are on, your focus will be on kicking cancer’s ass which is what I did and I am still here today, enjoying every moment, the good and the bad.
    My prayers are with you!

    Karen from Arizona

  5. Dale said, on August 20, 2009 at 5:35 pm

    Sounds like you’ve got the right attitude,
    You’ve got my good thoughts for what that is worth.
    So give it hell and kick it’s butt

    Dale

  6. ludden said, on August 20, 2009 at 5:35 pm

    hey man
    glad to see this
    reading your note about the mri provoked me
    i had one last week
    after all the hoopla about claustrophobia and noise
    found it real entertaining
    all the clanging is in rhythm
    don’t know why they don’t just call it a rock and roll machine and charge people extra for the backstage vibe
    msg me if you want me to send you some dvd’s that you’ve already seen 40 times and will watch another 40 cause they were made back when movies were good
    m

  7. Dave said, on August 20, 2009 at 8:15 pm

    best wishes from niwot, co. you are in our thoughts. dave

  8. Claire the Bear said, on August 20, 2009 at 8:18 pm

    Sean, found your blog through Craig Crawford. Thoughts, prayers, and good karma are being sent your way! Keep up the fight!

    -Claire from New Hampshire

  9. Craig Crawford said, on August 20, 2009 at 8:19 pm

    The image of a naked Chuck Grassley is far worse than BRAIN CANCER. Yuk!!!!

  10. Corey Doan said, on August 20, 2009 at 8:22 pm

    Sean, we miss you at the C-List. I hope that your treatments go well and help you kick this cancer’s butt! We’ll be pulling for you and praying for you, too!

    Corey D.

  11. Alamar Fernandez said, on August 20, 2009 at 8:25 pm

    I can not imagine what you are going through. I believe you have the courage & faith, necesssary, to believe & expect a good outcome. You are in my prayers, as well as, your family & friends.
    I am recovering from extensive shoulder rotator cuff surgery…arm in a sling for at least 6wks…I have plenty of time to pray for you. May your heart be filled with Peace:)
    Alamar

  12. Donna said, on August 20, 2009 at 8:28 pm

    Hello. My thoughts and prayers are with you as well. I know everything you’re talking about. Loved your nurses blog. Many in my family were nurses, and I know first hand the kindness of nurses to a sick family member.

    Seems like you have everything in hand, but have you ever checked out the resources of the Tug McGraw Foundation? http://www.tugmcgraw.com/home.asp They’re involved with treatment and quality of life issues for brain tumor patients.

    Stay strong, my friend.

    Donna

  13. DGiant said, on August 20, 2009 at 8:31 pm

    Sending good thoughts and positive vibes your way.

    This blog should be read by all the politicians.

    I believe affordable health care is on its way sooner rather than later!

  14. Chloe said, on August 20, 2009 at 8:37 pm

    Love you Sean. Get better and come by TM so we can have a good fight. I don’t know what about, but I’m sure we’ll think of something. 🙂

  15. Suellen said, on August 20, 2009 at 8:44 pm

    Sean,

    Positive thoughts and many prayers from southern Maine. I hope some of the screamers that are disrupting the health care town halls happen upon your blog. It might just make them rethink their motives.

    Chin up and lick this thing!

    S.

  16. Colorado Bob said, on August 20, 2009 at 8:46 pm

    LL –

    Drop by the Trail Mix , we’re in a ” funny drought ” over there big time. You seem to be carrying the only ” laughing water ” these days, and all with a brand new hole in your head.

    “Atta Boy”

  17. Pam said, on August 20, 2009 at 8:49 pm

    I hope all goes well. I know you have a fight ahead of you and I wish you the best.

  18. Max said, on August 20, 2009 at 8:54 pm

    Your attitude inspires Sean. It IS important to understand how much R & D and professional excellence is require to combat serious pathology. It is not something Home Depot can supply. Would you say you are happy with the healthcare services supplied? I guess the outcome figures into that call. I hope wherever we go on healthcare we do not damage the great effort and quality we have achieved. I would have to side with Captain Kirk on that one (v the many).

    Thanks for explaining the cutting edge for us from the inside and being such an excellent example of fortitude and good cheer. Amazing. If kissing Grassley’s naked butt will help, just have him email me. This however, will cost you more than that beer (but less than your insurance premium)….

    Max

  19. Susie from Philly said, on August 20, 2009 at 9:02 pm

    If the pills don’t work, try weed. Seriously. It’s the only thing that works for a lot of people, and if you can’t eat, you can’t nourish yourself.

  20. Michele Thorson said, on August 20, 2009 at 9:40 pm

    I will be praying faithfully and wandering back to this sight to check on your progress. Looking forward to hearing about your complete recovery. It would be wonderful if a purpose to this nightmare would be to help transform much needed healthcare reform.

    grace&peace,
    michele.

  21. Rich said, on August 20, 2009 at 10:28 pm

    Sean, i also found your blog through Craig Crawford. I’d admire your attitude. Thanks for having the courage to use your situation to help with the health care debate. Our thoughts and prayers are with you. Kick ass!

  22. Flatus said, on August 20, 2009 at 10:37 pm

    Lard, after a while the radiation will probably cause some skin burns. It’s not too soon for trying to figure out what kind of soap will work best for you, i.e., which will cause the least irritation. Some people say putting aloe on the scorched area will work; Stinky said all it did was make her feel messy and yucky. The moral of that is, do whatever works.

  23. Earthspeakorg said, on August 20, 2009 at 10:53 pm

    Prayers and Best wishes for your treatment. My niece with a brain tumor had good luck with miso broth and seaweed, if you can stomach it during chemo. It is good to counteract radiation. Also, medical herb for the nausea. peace❤

  24. Jamie said, on August 20, 2009 at 11:37 pm

    Sending all sorts of good wishes your direction. Do you need patterns for dashing turbans or would you prefer a selection of stylish chapeaus?

  25. Jason said, on August 21, 2009 at 12:43 am

    Sean, best wishes for a full recovery from NYC. Your strength is an inspiration. Seriously. I’d have lost my sh@t by now.

  26. Susan said, on August 21, 2009 at 1:11 am

    Thanks to Craig Crawford and Twitter, the Hive Mind is abuzz from coast-to-coast with best wishes for your speedy recovery. All the best.

  27. Kate said, on August 21, 2009 at 3:43 am

    Found you from Craig Crawford. Hang in there Sean Shawn. Stay strong, have hope and keep your sense of humor. I loved all the kind things you said about nurses – so true.

    FYI – Temozolomide (brand names Temodar and Temodal) was developed by Malcolm Stevens and team at Aston University in Birmingham, UK. Many drugs are developed at universities and then big pharma swoops up the patents, so they don’t actually do the R & D. I learned this from a friend who worked in the University of Washington Tech Transfer office.

    Kate in Seattle

  28. Mike Hickey said, on August 21, 2009 at 5:12 am

    Chuck Grassley naked…that is what the C street guys should think about before they start to stray from their holy mission!!

    It is very cool you are blogging about your experience. I hope you feel all the positive thoughts and energy coming your way.

    Remember Rubin “Hurricane” Carter’s saying “You can’t break me ’cause you didn’t make me”.

    Kick some ass!!

    Mike

  29. ct, Carol said, on August 21, 2009 at 6:57 am

    When you get your chemo, it helps to visualize Pac Man eating away all the bad cancer cells. Even better, you can visualize Pac Man eating away all those in our government who are trying to undermine any reasonable health care reform.

  30. sturgeone said, on August 21, 2009 at 7:03 am

    Lardmann………..ditto what colorado bob said……humor is the best medicine? But then, of course, readers digest is going belly up………..just goes to show you it’s always something……….

  31. Julie said, on August 21, 2009 at 12:03 pm

    Wow, you really put it in perspective. You’re so right – having a good job should have nothing to do with the health care that a person receives. Best to you.

  32. Ann Hellmuth said, on August 21, 2009 at 2:54 pm

    Keep Solarcaine handy to deal with the burning feeling. i used it all the time when I lost my hair to chemo

  33. claudine hellmuth said, on August 21, 2009 at 6:05 pm

    wow and I thought my migraine pills were pricey!!

    thank goodness on the timing of the health care. Fingers crossed your new coverage goes smoothly. I have friends who have zero health coverage and it is so scary!!! hugs to Kaley and Chopper!!!

  34. Kalais said, on August 25, 2009 at 8:49 pm

    Hehe, Cheney and Rumsfeld at the controls. God help us…
    Kia Kaha Sean! (NZ Maori for ‘Be Strong’)

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