8-15-11: Another couple months already! But happily I have an article recently submitted by David Haas entitled "Fitness Helps Fight Cancer" that addresses aspects of how exercise can benefit cancer recovery as well as benefit friends and family of the patient. The article is to be found on the Cancer-Related Links, Articles, Testimonials page. Thank you, David.
6-17-11: What?! A year? Already?!? My how time flies!
It's hard to believe it's been that long since I received the official diagnosis: Glioblastoma Multiforme (or as i like to call them, "The Head Weevils"). And while I'm thankful I'm doing relatively well, all things considered, I still have a long way to go.
The remaining tumors have "stabilized" the last few months which is good news, but I'll breathe a huge sigh of relief when they're gone. The next MRI is in eleven days, so we'll see how things are continuing, then. Dum spiro spero (which translated loosely means, "so long as i have breath, i hope")
In the meantime, I'm doing my best to live and enjoy my life, and I'm happy to be able to do so with the love and encouragement of my amazing circle of family, friends, and neighbors.
And I'm happy to report chocolate shakes taste even better!
Sadly, perhaps, my opinion is unchanged regarding raisins. Ah well, more for you, right? However, I have happily developed a liking for cottage cheese.
Currently in the midst of a career transition to try to become a photographer; necessitated first by personal desire to do so (hey, the slate's essentially been wiped clean, so why not?), but also unfortunately because of unscrupulous business practices by my former employer.
And Jeeez! Don't let me forget to make special mention of my beautiful wife!!! It'll be our one year anniversary in eight days. Not only has she been the highlight of this past year for me, but she's also the highlight of my life. There are no words to describe how indebted I feel for her love, kindness, and generosity towards me, as well as for her incredible strength of character. She, along with my amazing circle of friends keep me looking for new sunrises, not just sunsets.
4-13-11: Whew! I head out the door for a jug of milk, and next thing I know it's 9 months later.
Talk about Gamma Brain!
Seriously though, much has transpired over the intervening months, some ups, some downs, and so on. life is returning to normal minus a couple things, but i'll have to get into all that stuff later. as it happens i'm leaving for boise for a couple days to clean up a couple loose ends i left dangling when i moved to pdx in 2006, namely clean out my remaining storage units. i'll continue writing upon my return.
7-29-10: Just added a couple more sites to the humor page an old friend just passed along: Unhappy Hipsters and Sleep Talkin' Man. Good stuff, I must say!
7-21-10: Apologies for not being more diligent in getting material up and keeping updates coming, but I've been feeling the fatigue from radiation treatments the last few days in the evenings which is generally the time I set aside for this, emails, and mariokart--there were no winners except for catching up with my pillow. I think the runs, swims, and rides have helped maintain enough energy to get through the day, and I'm finding as I readjust my sleep cycle to get more rest at night as well as over the coarse of the day by allowing for an hour of two of "quiet time" to put everything down, let the mind breathe, close the eyes if I feel like it, relax and maybe read if it doesn't get too many wheels spinning--not including the hour(ish) AM run on Powell Butte which I consider 'active rest' where my mind can let go, stop when I hit the top, relax over by the compass rose, stretch, breathe deep, and when the clouds are high enough, let my eyes wander over the landscape and vistas revealing Mts. Hood, Adams, and St. Helens in their majestic splendor which makes it pretty easy to chill out for a while--that my energy levels in the evening remain high, so cheers to that.
Anyhoo, that aside this isn't really recent news, but it's the first I've written of it here: Amanda and I and a host of others have started a team, Tim's Tumor Terminators, for the Portland Brain Tumor Walk on Saturday morning, August 28th, which is run for the purpose of raising money for the nonprofit Nat'l Brain Tumor Society which then funnels the money raised to fund research aimed at fighting, treating, and preventing brain tumors.
Anybody who has that morning free and would like to join us on the walk, we would love to have you. We've got a great group of people together, but it's always fun to add more spice to the mix. And if you can't make it for whatever reason, it is possible to become a "virtual team member," and we will certainly count you as walking with us in spirit if you'd like to join us that way. and of course, if you can't make it, but would simply like to make a donation, we're happy and grateful for any donation you are able and comfortable giving. The bottom line is every little bit helps fight brain tumors, and also reaffirms that there's strength in numbers, so if you haven't already, please join us in any way you can, if you can. Thank You! For details visit: Tim's Tumor Terminators.
Also related to that, Amanda and I have designed a t-shirt to be printed by a local Portland screenprinter that we'll give gratis to team members and virtual team members in gratitude for them taking the plunge with us and be with us in person and/or in spirit. The drawing on the front was drawn as a Get Well card by my brother's girlfriend's son and was brought to me by him as I lay in the Intensive Care Unit after my operation. It was incredibly touching to me, and it still gives me a kick to look at it. And I find it funny to see the impact of Star Wars on our culture, it's bigger than Shakespeare and possibly even as good. It certainly warms my heart to have gotten it and to think on the thoughtfulness and poignant message.
For those who can't become either form of team member (walker, or virtual) but would like a shirt, we ask for a minimum donation above the cost of the shirt ($5.00 donation +$10.00 for the shirt). Every little bit helps in the fight against brain tumors. If you'd like to place an order, please contact me at nuggetnoggin@gmail.com, and we can work out the details. Thank you.
Below you'll find the shirt graphics and a pic of the artist. The shown shirts will come in Adult and Youth sizes. Not shown will be a fitted women’s T with the same color scheme for those that would prefer that option. We'll be placing the order by Monday, August 2nd to allow for production time in time for the event, so if you haven't already joined the team and would like to, or if you'd simply like to order a shirt, please do either by August 1st so we can get the order in. We’ll be contacting everyone for their shirt sizes. Thank you for all your support! We're all grateful.
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| The diminutive artist, snowball in hand, sizing up yours truly with intent of malice as i innocently step out for my brisk morning stretch, Christmas Eve Morning, 2008. A battle ensued. |
7-16-10: Finally got my hands on the Pathology report for what they removed of the tumor, and I placed it after the Surgeon's report towards the bottom of the Medical Reports page.
To briefly update about the ongoing saga revolving around who is going to pay what for the Temodar I've been prescribed for chemo, the drug benefits company finally decided to play ball to a degree that I'm happy with. In short, After having just completed the first week of chemo and radiation, I have five weeks worth of Temodar I need to be taking daily in order to complete the initial six week course. The rough cost of the drug for five weeks is $11K and some change. Well, the drug benefit company finally came around and picked up $10K and some change of the cost, leaving me on the hook for just over $1K; still expensive, but I'm more than happy with saving well over $10K. I'll still have 5-day maintenance courses to take each month for the 4-6 months following this initial six week course, but if the drug benefit company continues to play ball, I'm happy for the savings as well as the profound lack of stress trying to figure out how to get things paid for.
7-15-10: It's been a while since I've done any updating. Been extremely busy with appointments and so on the past few days and have basically been running out of steam in the evenings when I generally try to put time in on this. That said, I feel my steam returning in the evenings, and I have a lot of material to add regarding my treatments as well as some great sources of information about cancer and treatments in general. I seem to now have a small, dedicated staff doing research for me including my parents and a couple friends with medical backgrounds, not to mention a couple people I've been put in touch with who have personal experience with the battle against glioblastoma whose insights have provided valuable guidance in my search for answers. Taken altogether it's proven fruitful and i'll be sharing the fruits of their labor over the course of the next few days.
Also, my attempt to have the cost of the chemo subsidized has been dropped because the combined income of my lovely wife and I is outside the range acceptable for subsidy. Fine, that's understandable, and besides, I'm now covered by her insurance and drug benefits package through her work, right? Well, yes; however, the drug benefits company is balking at the usage of the chemo, Temodar, that's been prescribed by my chemo oncologist to help arrest and kill the tumors remaining in conjunction with the radiation treatments. The benefits company calls it a "specialty" drug so it's outside its coverage, but you can be sure it's because of the cost. My oncologist's office is in contact with the "benefits" people to try to convince them of the need for the drug (and by the way, it's been FDA approved since 2005), so we'll see what happens. The doctor's office is also pulling in a rep of the drug company, so we'll see what channels he's able to open. Regardless, I'll be doing whatever needs to happen to get enough Temodar to finish the course.
As a sidenote, I just sent an email to the White House giving a brief rundown of my story and this part of it in particular, explaining the need for what I see as further healthcare reform. If I receive a response I will update.
7-9-10: Added the Treatments page with an explanation of the chemo and radiation treatments I'm currently undertaking.
7-7-10: Here's a fun update that I will ultimately get in greater detail about when I put up the healthcare and health insurance page, probably in a few days. I have health insurance now but it hasn't kicked in yet, so the course of chemo I need which starts July 8 is treated as if I'm uninsured meaning I pay for it myself. Understandable. & to that end my chemo oncologist's office had me turn in my 1099 from last year to apply for a subsidy from the drug company. Well, the business I work for is still a young startup, and unfortunately business wasn't great last year (happily, it's much better this year and the outlook for next year is even better), so the short of it is I made less than $20,000, not a lot I know, but what with some modest savings from fatter years and with living frugally like i tend to do anyway, still more than enough for me to live comfortably, but guess what, that apparently didn't matter a wink to the bean counters at whichever drug co (in fairness to the drug co. it seems possible/likely that the paperwork got hung up somewhere). I made an original order for the entire 42-day course of temodor I need to go along with radiation. Cost: $12,672.82 (that's with a discount of 10% from the pharmacy shipping the drugs for being self-pay)...wow! (fortunately i had that in an investment account i have). Is it me or is it price gouging? I understand they need to make money to do research, but sheezus, I'm guessing somebody's boat has a full tank. Anyway, I was just informed my insurance will be active in a week, so I called the pharmacy back and changed the order from 42 days worth to 7 days. Cost: $2112.14...muuuuuch better on my pocket book. Can't wait for the insurance to kick in. They can settle things with a boat race for all I care.
7-6-10: Added the Brazil Portion of the story on the Brazil page, and updated the Medical Reports page to include the notes from my Primary Care Doctor that include her initial findings and concerns that ultimately led to my first MRI. The MRI findings have also been put on the Medical Reports page. On the Humor page I added a note to the Adam Carolla Podcast link to mention that a friend of the show, Bald Bryan, is also fighting brain cancer, and he is frequently on the show talking about what's going on and how he's doing.
How I'm Trying to Put This Together:
Moving forward from today, July 3, 2010, I will be adding to the story of my diagnosis and battle with glioblastoma multiforme.
I will try to organize it by pages (with links to the pages located about 2/3 of the way up the right side of the page (for my parents)) that will also include:
-Page(s) of links to cancer-related subjects including support, research, prevention and potentially useful "alternative" therapies. There will undoubtedly also be links to humor sites. A good sense of humor and a positive attitude are key to eliminating stress and beating cancer.
-My medical reports including the pathology report, and surgeon's report (a good read--he has a gift for narrative)and anything else that seems relevant, like the initial findings when i had my first trip to the emergency room in January, 2010.
-My take on healthcare including health insurance because it does play a part in my story.
-I'll also include something about the incredible quality of care I received from the nurses, doctors, therapists, social workers, volunteers, and even receptionists at the hospital I ultimately went to for my surgery and ongoing treatment.
-Pages related to key points of my story from the time of my first symptoms in January, 2010 until I received my diagnosis in June, 2010.
-Updates on the chemo/radiation treatments I will be going through which start on July 8, 2010.
I should mention that a high point of my journey thus far was the day after I got out of the hospital, June 25, 2010, I got married to the beautiful Amanda Muenster in a beautiful ceremony in our backyard surrounded by our families. and dogs. She's been a constant source of support and love, and we're looking forward to a long, happy life together.
I also want to offer my deepest thanks to all my friends and family for their love, support, and encouragement. Cancer is not something one wants to take on solo, and everything I've received has helped buoy my spirits making recovery as easy as it's been. I'm very lucky.
