Tuesday, September 29, 2009

Wait a minute...

Alright, enough looking back! I just re-read my last post and my stomach dropped again... I know this is only natural but realize that doing this will only weaken my resolve and just need to concentrate on continuing to live in the moment and to look forward to positive future experiences. Cue up my L.A.Hawaii trip! I just noticed it's only two weeks away :D

I already know what awaits in Socal having lived there for a couple of years. It's all good stuff ;)


Pic taken at El Morro Canyon trail in Newport Beach where I used to live. What a reward after a great ride!

However, it's just now starting to sink in that I'm gonna get a chance to explore the island of Oahu! I've been online checking out the things to do and there's tons. On my list is scuba diving, swimming with sharks or dolphins, of course surfing, hiking the volcanoes, exploring, a little nightlife and taking in the local culture. Needless to say, I'm getting pretty excited.


Stock Oahu shot 1

Stock Oahu shot 2

Stock Oahu shot 3

I'm also realizing that my time (or full time) here in Michigan is winding down. I'll probably start gearing up to move down to my place in Florida once I return from L.A.Hawaii late October. I plan on commuting between FL and MI based on my treatment schedule which is once every three weeks. It's a little scary as I have a nice little safe haven here at my Mom and Rich's place and there are days where I definately need the moral support from family (and Mom's cooking!). Even though I feel fairly decent most of the time, there are times where I feel pretty lousy (for a number of reasons). That said, I think I will be fine on my own again... Knowing myself, I tend to thrive when challenged so I'm looking forward to once again testing myself (as if I need more challenges!).

I probably wouldn't even be thinking about leaving Michigan if the weather didn't get so damn cold here in the winter! I've been gone now for the last 4 winters and can't imagine dealing with sub zero temperatures again, especially with all this muscle/joint soreness I have from the SGN-35. I think my bones would crack...! Not to mention, the sun does wonders for ones mood and helps facilitate the active lifestyle I need :) If I was to stay here in Michigan full time, I would probably do like I always used to do and that is hibernating and bitching and moaning about the cold!



By the way, have I mentioned that us Michiganders are bad asses?! (lol:) Anyway, in all seriousness, with my plan, I'll only have to deal with the cold a few days a month if everything goes like I want it to ;)

God willing, this drug continues to work and I'll feel good enough to stick to my plan.

Monday, September 28, 2009

Mind Games...

I haven't done this in a while but I've been looking over my shoulder tonight... I read a post by an 18 year old newly diagnosed stage 4 Hodgkins survivor on my Lymphoma Forum and thought back to when I was first diagnosed.

I remember it all being so surreal and overwhelming. I had originally been told I had asthma and was given inhalers to "get rid" of it. After doing this for 3 months and contiuing to have symptoms I went back to my primary physician and demanded an x-ray. I'll never forget the look on my doctors face when she told me that I had some "abnormalities" in my lungs. Everything after that was a blur and of course the rest is history.

Back to the newly diagnosed 18 year old... He posted tonight with questions on what he should do, smart move. I was referred to a supposedly brilliant Hematologist/Oncologist who assured me that everything was going to be ok. He started me on the then goldstandard primary chemotherapy regimen for Hodgkins called ABVD (at least here in the U.S.). This is the same advice this young guy is being given by his Oncologist. Turns out, this is not the best way to go. There's another primary therapy regimen that was first used in Germany called BEACOPP which had been shown to dramatically increase the cure rates for late stage Hodgkins. I was rushed into my first line treatment without being given this option and it turns out it was the biggest mistake of my life (or so it seems). It was so hard to know this at the time though. I went for a second opinion (after my first infusion of ABVD) and was given the BEACOPP option by my second Oncologist at the SCCA and it scared the crap out of me. He told me about the 7% chance of developing a secondary cancer, Leukemia and the more severe side effects. I didn't want any part of it! If I only would have known... Perhaps I would have been more compelled to go down this path if I had originally been given the statistics. I felt I had a safety net though after being told that if after 2 cycles of ABVD my disease wasn't responding I could switch to BEACOPP. So, after 2 cycles of ABVD I had a PET scan and there was no evidence of disease! What I relief I remember thinking. Of course I continued on with the ABVD and because my disease is so crazy, it grew throughout the following 8 treatments and here I am today still fighting the disease. This is after subsequent double high dose chemo/radiation then stem cell transplant, go figure. Should I have started with the BEACOPP in the beginning? Would it have really mattered? Statistics say yes but statistics also say that after a clean PET scan after two cycles of ABVD cure rates are 90+ percent so go figure. I'm of course skeptical of statistics but can't help to think what may have been...

I guess you can't go back and change things right? I know looking back won't do me any good moving forward but it's tough sometimes. I made sure to tell this young guy that he should carefully weigh his options and get as many opinions before he starts his treatment. It's obviously the most important decision in his life. Sometimes (like tonight) I wish I had someone telling me the same thing when it was all going down but know there's nothing I can do about it now.

I guess everything happens for a reason though right? I guess one of these days I'll figure it out...

Sunday, September 27, 2009

Lions, oh my!


Ford Field Detroit Michigan

The monkey is finally off our back... When I say "our", I mean anyone who like myself is a tortured Detroit Lions football fan ;) Going back to last year, the Lions had lost 19 straight games... Today however was a glorious day and I had a chance to witness it! My buddies Mike and Pat hooked me up with a free ticket and I like to think I made the difference (with all my good luck and all ;) in the win, ha! It was pretty cool that the players decided to come back out to the field to shake hands with the fans and thank them for continuing to come to the games (even though the crowd was somewhat sparse). Afterward, had a chance to get some of the best pizza in the world, Buddy's pizza, yum! Overall, a very satisfying Sunday :)


This is my new buddy Alex (Mike's son). He loves Buddy's pizza!


Detroit Lions coach Jim Schwartz. I originally posted another pic with the guy from Reno 911 and how they look similar but decided to take it down out of respect...

Prior to today, things have been pretty mellow. The summer's winding down and I guess I'm just trying to adjust. I've still been getting out on my bike at Stoney Creek and I've realized how therapeutic it is for me. The leaves are slowly starting to change and within a few weeks will be falling off the trees. It's a bittersweet thing as it's so beautiful to see but so sad to know winter is on it's way...


A "stoney creek" at Stoney Creek Park

I've been feeling pretty decent lately and think I'm finally getting used to this SGN-35. The glucosamine is still working to ward off the aches (for the most part) and like I said before, the exercise seems to be helping with my fatigue issues. So, everything is manageable physically right now which is good. I think because of this, my spirits have been better too. I've written about this in the past but the two seem to go hand in hand... As long as I'm feeling ok physically, I seem to feel ok mentally. I think this is probably true for most people, not just cancer survivors.

Anyway, that's all I've got for now, adios amigos!

BTW, Chili was asking me why I haven't mentioned her in the blog lately...


Chili has become like a lizard sunning herself in the afternoon!


"Dad, why are you interrupting my nap!"

Tuesday, September 22, 2009

Glucosamine!


Mmmmmm, lobster, crab and shrimp :p

I had heard about this stuff (glucosamine) recently and it's possible positive effects regarding my aches and pains from the SGN-35 and, on a whim, decided to stop at the vitamin store to pick some up.

I don't know if it's the supplement or a placebo effect but the nagging muscle aches I've had in my forearms, hands, shoulders and legs have completely gone away!! I want to think it's the supplement as if it was a placebo effect, I would have started feeling better after the chewable calcium tabs or by mixing tonic water with orange juice right? ;)

In any event, the combination of dried shrimp, lobster and crab in pill form has one way or another made me feel 100% better physically :-D

I feel pretty lucky today!

P.S. Still rooting for you Adrienne and Alison...

Sunday, September 20, 2009

Heartbroken...

Things aren't looking good for my friend Adrienne. She is such a fighter but it seems like the disease and all the therapy she's been through may be too much for her to overcome. She's been in ICU for almost a month now and I can't imagine how hard this is on her mom Alison. Adrienne has been intubated for the last two weeks and Alison of course has been in the room with her. It's gotta be impossible to sleep at night with the nurses coming in all the time to monitor Adrienne. I don't know how she's doing it and I have the utmost respect and sympathy for her. Ever since I've discovered my Hodgkins family through the Lymphoma Forum (on my cancer links down the page) I've looked up to the both of them as a source of inspiration and knowledge. Alison knows more about this hideous disease than anyone I know. She should, they've been fighting it for 12 years.

This is doubly tough for me knowing that I may soon be losing a friend and one day may be in her position.

Just gotta keep on living the best that I can...

My prayers are with them both and hope soon they may have peace.

Friday, September 18, 2009

Bored...

Yeah, I'm a little bored tonight and thought I'd ramble...

Watching palladia and Bruce Springstein is playing at the Glastonberry Festival. I've got a newfound respect for the guy as the entire audience consists of young kids and he's got em going nuts! The man is like a preacher on stage talking about "how you have to build a house" with things like music, love, hope, etc. -- the kids all looked mesmerized... He then busted into a song I remember as a kid, "Born to Run" and everyone went nuts! They (1000's of young fans) knew every word to this and other songs of his that followed. The album that song is from (The River) came out October 10th 1980, 30 years ago! I've noticed 80's music is big these days with the gen y crowd. Funny, when I was nearing the end of my teens and early 20's, 70's music (disco) came back in style! I remember going to the bar for disco nights at this club in Pontiac Michigan called "Industry" and everyone would boogie their ass off! Good times...



Starting to read a classic, "The Prophet" by Kahlil Gibran (thanks Mandy!). I think it's one of the most beautifully written, profound books I've ever read (so far). His artwork is incredible too! I busted it out after a bike ride at Stoney Creek when the sun was starting to set over the lake, perfect...

Here's some interesting passages so far:

On Joy and Sorrow;

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.


Need to think about this one a little more...

On Eating and Drinking;

And when you crush an apple with your teeth, say to it in your heart,
"Your seeds shall live in my body,
And the buds of your tomorrow shall blossom in my heart,
And your fragrance shall be my breath,
And together we shall rejoice through all the seasons."


I'll never look at an apple the same again!

On Giving; (this one's my favorite so far)

You give but little when you give of your possessions.
It is when you give of yourself that you truly give.
For what are your possessions but things you keep and guard for fear you may need them tomorrow?
There are those who give little of the much which they have -- and they give it for recognition and their hidden desire makes their gifts unwholesome.
And there are those who have little and give it all.
These are the believers in life and the bounty of life, and their coffer is never empty.
There are those who give with joy, and that joy is their reward.
And there are those who give and know not pain in giving, nor do they seek joy, nor give with mindfullness of virtue;
They give as in yonder valley the myrtle breathes its fragrance into space.
Through the hands of such as these God speaks, and from behind their eyes He smiles upon the earth.



Kahlil Gibran Artwork

I'm really looking forward to reading/absorbing the rest of this book and may throw some passages out there in future blogs for s&g's ;)

Back to palladia, Bon Iver's performing!! The lead guy is singing "Skinny Love" (on my playlist) and playing this awesome old rusty steel resonator guitar, really cool. Have I mentioned before that I dig palladia!!


Resonator Guitar

Just finished a bowl of my Mom's strawberry shortcake, whoa! I think she made the sponge cake from scratch, it was awesome! By the way, wanted to wish Rich a happy birthday! :D He's a young 65 today; hope it was a good one Rich!

Alright, I'm out... I need to get some z's so the SGN-35 can attack under the cover of darkness while the cancer cells are sleeping ;)

Night...

Thursday, September 17, 2009

Stable...

So, just laying here getting my infusion and received the results of my CT scan. Not good news, not bad news, kinda right in the middle -- stable disease. I'll take it though! My disease was small to begin with and didn't expect any dramatic decrease in size of my enlarged lymph nodes. In fact, the CT report noted that I might have acute inflammation in the areas I've been having discomfort so that's decent news. Hopefully the next couple of infusions will shrink these back down to normal size (plus the inflammation resolves) and I can enjoy a little remission time (or Complete Response which would be pretty cool).

I talked with my RN regarding my muscle aches and he said we'll keep an eye on it. He recommended Ibuprofen over Naproxen so I'll give that another shot. I know there are other anti inflammatory pain meds out there like Celebrex and the like just in case I need it. They also recommended trying Glucosamine which I can buy over the counter. Hopefully this will just resolve on it's own though and I won't have to deal with it anymore.

Looking forward to getting this infusion over with and continued success with this drug!

Ride On!

Wednesday, September 16, 2009

CT Results Tomorrow

Going in tomorrow morning for cycle 3 of SGN-35. That is if my CT results are satisfactory, which I haven't heard otherwise... I texted Dr. Ram requesting results and never heard back from him. I'm hoping they'd at least have the courtesy to call before I drive downtown to the DMC. I called this morning and they said I'm scheduled for infusion at 1:00 so I'm assuming it's all good right?! Or, does the doctor not want to tell me over the phone that I'm getting kicked off the trial?

Just one of the many mind games cancer plays on you...

Another is the ridiculous notion of wanting to continue with something (SGN-35) that has been causing so much pain lately. Don't get me wrong, if the stuff is working I am truly blessed. The blessing may also be a curse as my muscles are really starting to ache... This isn't surprising based on some of my fellow Hodgkins survivors' experience with the drug. Earlier in the week I was so sore that I couldn't sleep and had serious doubts if I'd be able to continue on the trial. I've been trying to fight back the ache by biking and playing golf the last few days and it seems to help a little and keeps me busy :) There are still times though that I feel more like 83 than 38! There were a couple of times this week where I was really scared that my body was breaking down... I feel ok right now however and hoping for a full nights rest without waking up to aching shoulders, arms and legs. Not too much to ask right?!

Looking forward to hopefully posting some positive news tomorrow...


Found this little guy in the middle of the road on my bikeride at Stoney Creek. I like to think I saved his life!


I rode around for a while hanging on to the baby turtle with thoughts of making him a pet but decided he'd be happiest swimming around with the other turtles in the pond in the background.

Sunday, September 13, 2009

Thanks Les!

Last night I got a text from my old friend Les that he was running in my honor in the 5K stamp out cancer run! My buddy Ramil had done this a few months ago and neglected to mention it (sorry Stinse). Anyway, it's a great honor and I'm lucky to have good buddies. Plus, Les finished in the top 5, nice work man!


Les before the race with his adorable kids!


A little "sleeve time" for my blog! Your penmanship is impeccable Les, ha!

Also wanted to post a pic taken last week at my friends' Roger and Mandy Davenport from Seattle (transplants from South Africa!)


Me and little Josh Davenport chillin... What a cute kid!

By the way, congrats to the Wolverines for an awesome victory yesterday over Notre Dame! Hoping Meechigan football is back!!

Also, wanted to thank my friend Gail for the recommendation of mixing tonic water and oranje juice to combat my muscle soreness from the SGN-35. It seems to work (at least a little! :)

Happy Sunday :D

Friday, September 11, 2009

Seattle Trip Highlights


Beautiful Seattle Skyline from Elliot Bay taken last summer

Well the dust has settled finally after getting back from Seattle. It went by so fast it seems like a blur... Strangely, the trip almost didn't happen. I had a chemo brain moment and got the time and actual airline I was supposed to fly mixed up! So, my buddy Rob dropped me off at the McNamara terminal with me thinking I was flying Northwest. I went up to the counter and the lady gave me a puzzled look as I tried to check in. "Uh, Mr. Carr, I only show a flight for you on June 30th"... Well of course, that's when I flew back to Seattle on a one way to move my stuff back to Michigan. She had nothing for September 1st... Of course, I thought I was screwed. For the life of me, I couldn't remember what airline I booked! So, discouraged, I called my buddy back after he had driven halfway home and asked if he could come get me (thanks again Rob). He did, and having a big cup of coffee in me, I had to find a bathroom fast... We ended up at McDonalds down the road (to his daughter Julias delight ;) To buy some time to think, we grabbed a happy meal for Julia and I thought of a way to figure out what airline I was supposed to be flying to Seattle and what time (normally something you'd do a day or more before you fly but that's not how I roll these days I guess...). Anyway, I got my bearings and thought to call my credit card company to see what the most recent charge was by an airline. Sure enough, there was a charge for Frontier Airlines for Sep 1 at 9:52 a.m. Great!! The only problem however, it was 10:45, yikes! So I called the nice people at Frontier and the CSR said that as long as I was at the terminal within two hours of my original flight, they'd put me on standby no charge for the next flight out :) 5 or so hours later, I was on my way, thank God! So, it was great to get back to the beautiful Northwest. I love my hometown of Detroit but have to say that now that I've been away from Seattle for a few months, it really is a smart, tasty, interesting, beautiful place...

video
Beautiful Twin Falls Hike 20 mins. from Seattle. May need to pause my music player.


Twin Falls Hike, notice the moss! It's a rainforest...


Gold Mountain Golf Course in Bremerton WA. Great scenery and nice soft greens!

I took a lot of things for granted living there (plus I was pretty much in treatment the entire time). I got a chance to meet a fellow Hodge Warrior and fellow SGN-35 trial participant Kirsten! Her and Ian were down to catch Michael Franti and Spearhead at Bumbershoot (among others). We had lunch at my favorite sandwich joint, The Honey Hole in Capital Hill. We then took them on a quick drive around town and dropped them off at the festival. It's really nice meeting friends who are in the same fight... There are so few of us refractory Hodgers and it gives me strength knowing I have friends out there that are on the same rollercoaster as me ;)


My friend Kirsten and I "illuminated" at the Honey Hole!

So back to Bumbershoot... We went on Monday to check out Keller Williams and Modest Mouse (from Issaquah WA) and they didn't dissapoint. As usual, the atmosphere was festive and included people from all walks of life. Also had a chance to catch up with some friends :) Nice to see you Roger, Mandy, Leslie and Joshua!


One of the more interesting Bumbershoot attendees!

video
Keller Williams jamming at Bumbershoot!

So a quick update on my SGN-35 adventure... I went in yesterday for my required CT scan after two cycles. Hoping for stable disease or better to stay on the trial. Unfortunately, some of the possible side effects of the drug are starting to take effect. I can handle the fatigue for a few days after infusions but the muscle soreness is starting to get to me. I've got some serious soreness in my arms, shoulders, legs and of course back. I've read on my Hodgkins forum that a way to combat this is taking in a lot of Calcium. My sister gave me some chewables she had so I'm hoping this starts to work. I really don't want to take more pain meds than I've had to take in the past... I'll update when I get the CT results.

That's pretty much it for now. Just wanted to say GO BLUE to my Wolverines! Time to take some revenge for the whooping we took last year from the Irish.

Tuesday, September 8, 2009

Going Home!


See ya Mt. Ranier!!


Realized I haven't updated in a while and plan to do so when I return to Michigan tomorrow. Seattle's been a lot of fun and looking forward to sharing when I get a chance.

Big CT scan and X-rays on the 10th. Hoping this thing in my side is an apparition and the mucuous and cough is a minor infection. I'll know more by the end of the week.

Ugh, 6:15 a.m. flight in 6 hours! Wish I could sleep.

P.S. Susanna, I hope you got my voice mail and e-mail saying thanks! Look forward to talking to you live soon.

P.S.S. Good luck on your scan results tomorrow Anastasia! Also, still praying for you Adrienne/Allison.

Buenos Noches :)

Thursday, September 3, 2009

Patience

I pulled this from my Hodgkins Forum this morning and thought it to be appropriate -- somehow...

September 3, 2009
Having Patience in the Midst of Discouragement
by Rick Warren

“You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, ‘He who is coming will come and will not delay’” (Hebrews 10:36–37 NIV).

If you’re discouraged because of God’s delay in answering your prayers, understand the delay is not a denial. Just because the answer or the miracle hasn’t come—yet—that doesn’t mean God isn’t going to answer, or that he’s forgotten you, or that he doesn’t care about you. It simply means “not yet!”

Spiritual maturity is knowing the difference between “No” and “Not yet,” between a denial and a delay. The Bible tells us, “He who is coming will come and will not delay” (Hebrews 10:37 NIV).

The delay may be a test of your patience. Anybody can be patient once. And, anybody can be patient twice. And, just about anybody can be patient three times. So God tests you patience over and over and over.

Why? To see how patient you are?

No, he does it to show you how patient you are. So you’ll know what’s inside of you, and you’ll be able to know your level of commitment. God tests you so that you can know he is faithful, even if the answers you seek are delayed.

If you’re discouraged, turn it around by remembering God teaches you patience during delay. Ask him to transform your discouragement into patience.

You may be going through difficult times right now and feel like dropping off the planet. You’re discouraged because the situation you face seems unmanageable, unreasonable, or unfair.

It may seem unbearable and inside you’re basically saying, “God, I can’t take it anymore. I just can’t take it anymore!”

But you can.

You can stay with it longer because God is with you. He’ll enable you to press on. Remember, you are never a failure until you quit.

Don’t quit. Resist discouragement and finish the race God has set before you."