Pills, a Speech, a Brick and Other Good Things
It’s been a while since I’ve talked about how Susan’s doing. There are a couple of reasons for this, neither of them very good.
The first reason is that how Susan is doing is complex — it’s not as simple as saying, “She’s doing really well” or “she’s not doing so great.”
In some ways, she isn’t doing so great. Something I don’t think I’ve mentioned on this blog, for example, is that the day before I was supposed to go to Leadville, I decided not to go. Susan had fallen, twice. One of the times she fell was against the sharp threshold of the shower, badly bruising her shins and nicking one of those shins.
Now, a nick wouldn’t normally be much of a problem, but remember: Susan’s on coumadin (a blood thinner meant to prevent any more blood clots forming in her legs). She started bleeding profusely, and I was more than mildly freaked out. We got it under control, but I did not want to leave her to go on a trip. And I wouldn’t have, except Susan made me. She said I wasn’t allowed to send her on the guilt trip she’d go on if I didn’t go on my Leadville trip.
So I went, but first I made sure Susan had lots of help.
And even though Susan’s now done with the radiation on her spinal cord, she hasn’t got much of her mobility back. She can get around with a walker in the house, but only slowly, and everywhere else she’s in a wheelchair now. Susan observed last night that there’s no way she could get into any of our friends’ houses now, and going to the book club she likes so much is going to be difficult, too.
In other ways, she’s doing really well: her mind is clear and sharp, which I am incredibly grateful for. The scooter has turned out to be a terrific thing to have; she and I have been taking the girls to school, and that’s really the highlight of my day.
Pills, Pills, Pills
Another piece of great news is that Susan’s made it through her first two-week course of pill-based chemo (Xeloda, if you’re curious). It didn’t go entirely smoothly — after the first few days, the inside of Susan’s mouth developed a painful batch of blisters. So she stopped, let the blisters fade, and then started again with a slightly lower dose — four pills per day instead of five. Since then, the side effects have been manageable.
But the Xeloda is just the tip of the pharmaceutical iceberg. Susan’s now on a huge array of drugs — or, excitingly, is either getting off them or is getting to take a break from them. And what’s striking is that a lot of the drugs you take as part of your fight against cancer are to fight the side effects of your cancer treatment.
Here’s what’s either on the pharmaceutical menu or has recently been on the menu:
- Xeloda: The chemotherapy pill. Having taken this for two weeks, Susan now gets a week off before taking it for another two weeks. There’s no finish line for this kind of chemo; Susan will be taking it indefinitely. This stuff’s expensive — our copay’s about $500 / month.
- Zofran: The Zofran is to combat the nausea the Xeloda otherwise brings on. Susan takes it half an hour before taking the Xeloda. Since she isn’t taking the Xeloda right now, she also doesn’t have to be taking the Zofran.
- Decadron: A steroid used to fight the side effects of the radiation. Susan just finished tapering off the Decadron — you’re not supposed to quit it cold turkey, or you’ll incur serious problems. Susan’s really glad to be done with this, because it weakens her already-weak legs and puffs her face up.
- Prilosec: An over the counter heartburn medication Susan was supposed to take to counter the side effects of the Decadron — upset stomach and even ulcers. Yes, the Prilosec was a medication to counter the side effects of a medication which was used to counter the side effects of the radiation. It’s like a row of dominoes. Now that Susan’s off the Decadron, she’s off the Prilosec, too. Yay!
- Coumadin: A blood thinner to prevent blood clots in her bloodstream, which are a side effect of Susan not being able to move her legs around much. This stuff’s tricky — don’t take enough and it doesn’t do any good. Take too much and it becomes poison. So Susan has to get tested every week to see what her PT levels are (I don’t know what PT stands for), and then her dosage gets altered. Currently, Susan takes a half pill on even days and a full pill on odd days, and the dosing could easily become even more complex than that.
- Seroquel, Ativan: A combination of drugs that help Susan get to sleep, something she’s been unable to do on her own since the tumors got into her brain.
- Lortab: For pain.
This may seem like a lot, but Susan and I are both excited about the fact that — for this week at least — Susan doesn’t have to take any of the first four drugs on that list.
A Brick for Susan
Susan and I continue to be surprised and amazed at the kindness people show us. A couple days ago, Susan got a letter from the Huntsman Cancer Foundation, saying that:
Because of the many donations we have received in honor of Susan Nelson, we would like to have a brick made honoring you. It would be placed along the walkway between the Huntsman Cancer Hospital and Institute. It is a beautiful location, offering sweeping views of the Salt Lake valley.
You may remember that Susan had her hip replaced at the Huntsman Cancer Hostpital, and the treatment she received was nothing short of stunning. So I love that Susan’s being honored there, and I love that people are donating to this really excellent organization.
I expect some of the donations this letter was referring to are from the raffle for the 29″ SS townie done at the Frozen Hog race last February.
Thanks to all of you, again.
MikeRoadie’s Speech
A couple of days ago, MikeRoadie — a frequent commenter on this blog and the guy I’ve been helping raise money for for his LiveStrong Challenge, though we’ve never met in person — emailed me a photo from his speech at the dinner honoring the top fundraisers.
I replied, “Waitasecond. You gave a speech, there? What did you say?” And MikeRoadie — lucky for us — still had his notes, which he sent along.
Since the speech is all about you — the folks who raised $37,500 in the Ibis Silk SL Raffle — I wanted to reprint it for you.
There is an old saying we’ve all heard, “If you want something done right, better do it yourself”. This is especially true when it comes to our mission. No one else is going to provide the funding for life-saving cancer treatments. The government can’t be counted on to do it for us.
It takes an ARMY, and that army has to grow everyday! Sick or well, rich or poor, busy or not; there is something that each one of us can do everyday to spread the message.
I’d like to thank FatCyclist.com and its readers; a thousand of my closest friends, none of whom I have ever met, for making it possible for me to be here tonight. I’ll be riding tomorrow in support of Fatty’s wife, Susan. If you see me on the road, please stop and have your picture taken with me a show of support.
WIN Susan. Live Strong, everybody.
This is my favorite speech, ever, and not just because it’s only one minute long.
And here are a few of those photos MikeRoadie is talking about in his speech:
One thing this cancer battle has done for me: I’m much less of a cynic than I used to be. I see firsthand, over and over, that when people are given a chance to do something good, they jump at it.
Thanks, everyone.
Comment by Mike P | 08.29.2008 | 8:12 am
It’s nice to see when good people stand out. All the “bad” things and people of the world get too much attention. It’s nice to see a reminder of those who do something to make the world a better place, just because it’s the right thing to do.
Comment by Carolyn | 08.29.2008 | 8:14 am
Great post. And I’m sorry. And I’m glad you get to skip the first four pills this week.
Win Susan!
Comment by Wes | 08.29.2008 | 8:28 am
That’s a nice kick in the pants before the holidays. Thanks Fatty!
Win Susan!!!
Comment by Mike Roadie | 08.29.2008 | 8:32 am
Always glad to help….and I mean that!
Susan, you are one AMAZING person. Elden and the rest of the Nelson clan, too.
WIN
Unite
LiveSTRONG
Comment by Canadian Roadie | 08.29.2008 | 8:36 am
Thank you for sharing your journey with the web community. It really makes me feel that we, the human race, have a chance. Your story helps me deal with my story, a great family friend who helped raise me, who is now dealing with metastasized (sp?) breast cancer in her liver. Little is said to me, I assume to protect me from the reality, but I think the more I know, the better equipped I am to be supportive. So thank you for sharing the details, the pain, and the good days.
Comment by Daddystyle | 08.29.2008 | 8:41 am
Give a persom faith in mankind.
Stay positive, love the Stanhope Clan.
Way to go Mike
Comment by Uphill Battle | 08.29.2008 | 8:43 am
Fatty, thank you for continuing to share, the good and the bad. There are lessons to be learned…for all of us. Susan’s story and the story of other cancer warrior’s has certainly given me a new perspective on life.
Continued prayers for good days!
Comment by Bryan | 08.29.2008 | 8:49 am
Thanks for sharing. I admire your families courage and commitment throughout these troubling times.
Mike, nice speech and way to go.
Comment by El Animal | 08.29.2008 | 9:06 am
I have tears in my eyes, and we’ve never met either.
Comment by Luis | 08.29.2008 | 9:10 am
Thank you for the news, on this side of the pond Kiko (my son) has asked about you and Susan so I will let him know the news.
Win
Comment by KanyonKris | 08.29.2008 | 9:11 am
Thanks for the Susan update. I always feel two things: 1) sadness that Susan has to endure these health problems, 2) gratitude for the good health I enjoy.
MikeRoadie: Hurray for you out fighting the good fight!
Comment by Heidi | 08.29.2008 | 9:31 am
I’m in the same boat as El Animal–tears in my eyes. Wishing you all the best.
Comment by Scrod | 08.29.2008 | 9:31 am
So glad you guys are getting so much support. Worth more than a handful of pills. You don’t even know how much credit you deserve for sticking by her side and working as hard as you do, while still maintaining some sanity.
WIN SUSAN!
P.S. – PT is prothrombin time, a measure of how long it takes blood to clot.
Comment by rich | 08.29.2008 | 9:32 am
one again I sit at my desk with the door closed so everyone doesn’t see me with tears in my eyes….
Way to go MikeRoadie and WIN SUSAN and Nelson Family!!!
Comment by Garret | 08.29.2008 | 9:33 am
Thanks for the update on Susan. I wanted to share that I looked into QuickClot for my mom who is also on coumadin. It might be something to pick up and keep around the house.
Comment by Jon | 08.29.2008 | 9:35 am
I sincerely hope that Susan will one day be completely healthy and leading the charge against caneer.
We will keep your family in our prayers.
Comment by bikemike | 08.29.2008 | 9:40 am
Mike, you give honor to the name. thank you.
Susan, we are all humbled by your fight.
God bless you both.
Comment by judi | 08.29.2008 | 9:46 am
Yea, tears in my eyes like Rich, at work too.
Fatty, I am so so sorry Susan isn’t feeling so hot, but I am glad 4 pills are off that list now!
WIN SUSAN WIN!!
Comment by James | 08.29.2008 | 10:02 am
That’s the coolest thing I have seen in a long time… Such a good thing. Win Susan.
Comment by chtrich | 08.29.2008 | 10:09 am
WIN! Susan
Comment by Fat Cathy | 08.29.2008 | 10:21 am
I too have tears in my eyes. Great speech MikeRoadie!
WIN Susan!!
Comment by NW | 08.29.2008 | 10:31 am
Thanks Mike Roadie. What a cool speech. The pics were so great. Thanks to Fatty for sharing what’s happening with all of us, your readers. We care. Still thinking of your family.
WIN SUSAN!!!
Comment by Lisa B | 08.29.2008 | 10:39 am
Thanks for keeping us up to date, Elden. And I bet I speak for most of your readers when I say I wish I could do more for Susan and your family. You’re always in our thoughts and hearts.
Comment by Maria | 08.29.2008 | 10:44 am
Thank you for sharing Fatty, and well done MikeRoadie. It’s really a beautiful thing to witness a blogging community, who are all strangers to one another, uniting in Susan’s fight. You’re an amazing and courageous woman Susan; truly inspiring.
Comment by K | 08.29.2008 | 11:09 am
I too got all teary-eyed reading your post. Thank you for the update on Susan and to Mike Roadie for sharing his speech and pictures. I’m doing a tri in a few weeks with Team In Training and it’s just so inspiring to see stories of so many people coming together to fight cancer in different ways.
WIN SUSAN!
Comment by Charlie | 08.29.2008 | 11:24 am
Great job Mike Roadie!
Amazing to see the virtual community that has grown from Fatty’s stories…
Comment by Kathleen | 08.29.2008 | 11:50 am
Thank you for the update Fatty…Susan is much on my mind and I feel somehow better knowing what’s going on. And MikeRoadie rocks!
Comment by CovingtonKat | 08.29.2008 | 11:59 am
Fatty & Susan – it is very difficult to imagine your reality. I truly appreciate the way you share it with us – good times AND bad times. You & your family are in my thoughts so often…and I’m very thankful to be part of this blogging community.
Loved the speech and pics from Mike Roadie – and that so many folks saw the WIN SUSAN yellow sticker and stopped to have their picture taken.
And the brick honor is wonderful too!
Blessings and best wishes to you – and I hope your weekend is a good one!
Kathy
WIN SUSAN!
Comment by Trail Dog | 08.29.2008 | 12:33 pm
Fatty & Susan,
I’ve just recently been turned on to this blog. What a post to start with. You’re first paragraphs struck a real chord with me as my wife was on the coumadin for a time as well. It’s great to see the triumph of the human spirit still at work in both of you as well as all those that fight along side of you. I’ll keep both of you in my thoughts and prayers and keep riding for a reason.
Trail Dog
Comment by Miles Archer | 08.29.2008 | 2:16 pm
No thanks needed. You’d do the same for me if the situation was reversed.
Comment by Paul | 08.29.2008 | 2:24 pm
In other ways, she’s doing really well: her mind is clear and sharp, which I am incredibly grateful for. The scooter has turned out to be a terrific thing to have; she and I have been taking the girls to school, and that’s really the highlight of my day.
Thank you, Eldon. I cannot seem to put this into any logical reasoned statement but: this feels important. I know I’m not making any sense, but thank you for sharing this.
WIN SUSAN!
Comment by tim | 08.29.2008 | 2:31 pm
great post Elden.
Mike Roadie – you are a TOP DUDE!!
Keep on rolling
WIN SUSAN.
Comment by Anne | 08.29.2008 | 3:39 pm
WIN SUSAN!
Comment by KT | 08.29.2008 | 4:55 pm
Thanks, Fatty, for sharing your life story with us as it goes along; thanks, Susan, for letting him share your story with us, and for giving us a reason to strive to be better people: by helping, by giving, by praying to the Great OoglyGoogly in the sky. You’ve inspired a large quantity of people the world over. We’re fighting with you.
And MikeRoadie: you are also an inspiration. Don’t blush, it’s true.
Keep smiling, everyone– and keep riding!
Comment by Jodi | 08.29.2008 | 5:31 pm
Great speech Mike – wonderful pictures. Thank you so much for advocating for Susan and all of us.
So cool about the brick, too. These monuments to the acts of kindness surrounding Susan and you, Elden – are lovely. I’m so happy to hear of things being manageable for now.
I love you guys.
Comment by Jill | 08.29.2008 | 5:54 pm
Elden,
Have you tried Lysine for the mouth sores? You can buy it over the counter in a mouthwash and a toothpaste. Pick her up both along with a new toothbrush. Worked wonders for my mom…hope it works for Susan.
Jill
(Tony Parkinson’s Wife)
Comment by Linda | 08.29.2008 | 5:55 pm
When given the opportunity, most people will step up to help. If every person reading your blog were to get involved in just one charity ride (either by riding, fundraising or volunteering) think of how many more people will be touched by their actions. It’s what we are all here for. Helping one another…
WIN Susan!
Comment by Paula Kirsch | 08.29.2008 | 6:00 pm
Fatty, thanks SO MUCH for the update on Susan. I love your blog but frankly I read it mainly to see how the incredibly courageous Susan is doing. I wrote the NPR program “This American Life” about you two, I wish they would do a story on you because you two exemplify what courage and spirit are IMO. Thanks again for the inspiration, WIN SUSAN, and God bless you and your kids Fatty.
Paula
trustbut.com
Comment by LW | 08.29.2008 | 6:33 pm
Thanks for the update! I’m not a cyclist, so I usually check it for the update on Susan. This time last year I was undergoing radiation and taking Xeloda. I can completely understand the medication domino – taking one, then another for the side effects, then another for those side effects – YUCK! I am praying for you guys!
WIN SUSAN!
Comment by Bluenoser | 08.29.2008 | 7:12 pm
Great post Fatty. By the looks of the comments it just goes to prove that underneath it all a lot of us are compassionate even if we are human.
-B
Win Susan.
Comment by Don | 08.29.2008 | 8:41 pm
*teary eyed*
Fatty, that was an awesome post. It IS truly touching to see what can happen when people pull together. God bless you Susan and family!!
Mike, you are one class act! Way to go, your words could not be more true. As someone who lost a father to this disease, THANK YOU!
WIN Susan
LiveStrong
Kick Cancers ___!
Comment by Don | 08.29.2008 | 8:43 pm
By the way, Mike, $55,768.50?! Seriously, awesome.
Comment by Susan | 08.29.2008 | 9:06 pm
I’ve been wondering how Susan’s doing. I think of her often, even though I’m one of the many people here that you don’t know. I know cancer stinks, but I’m always amazed at the good that can be found in the face of adversity. You’re one heck of a family – Win Susan.
Comment by Clydesteve | 08.29.2008 | 9:09 pm
Right on Mike Roadie, great speech. Elden, thanks so much for the update. Susan, I am still praying for you and your family, but especially for you every day at 2:01 pm, Pacific
Steve
Comment by Yukirin Boy | 08.29.2008 | 11:05 pm
thank you Fatty for sharing news of Susan’s progress.
MikeRoadie, and everyone here who helps in every little way are wonderful people.
WIN Susan!
Comment by Jenn @ Juggling Life | 08.29.2008 | 11:31 pm
You’re last paragraph really struck me. My mom once said, “I can’t believe it took getting cancer to restore my faith in humanity.”
Comment by Hamish A | 08.30.2008 | 7:17 am
Thanks so much for the update on Susan, Elden. You can’t know how much your ability and willingness to share what you’re all going through means to us. You’re an amazing Family and an inspiration to us all.
Well done Mike Roadie. Fantastic speech, great pictures and a truly gargantuan effort on the fundraising front!
Stay strong Elden, WIN Susan!!!
Comment by Pammap | 08.30.2008 | 7:56 am
Also teary-eyed. Thanks for the update and congratulations on the Brick! Very cool.
MikeRoadie, you Rock! Great speech.
WIN Susan. 2:01 p.m.
Comment by regina | 08.30.2008 | 2:01 pm
WIN SUSAN!!!
Comment by Dad and Janel | 08.30.2008 | 2:05 pm
Thanks for the update Elden, it is good to know how things are going. We are pulling for you and Susan. it is neat to hear how you are dealing with these trials in life that we all get from time to time. We are impressed with all the friends you have on this blog that offers hope and encouragement. Thanks to your friends.
We want to see the brick at the Huntsman center when it is placed. Hang in there you two!!
Comment by Marge g | 08.30.2008 | 3:50 pm
Thanks for the update on Susan Elden. Speaking of Huntsman, I am inspired to ride my first mb race ever (65 and over beginner class) in the Huntsman Senior Games this October in St. George, Utah. I will be wearing my pick jersey in honor of Susan. I hope to WIN too. I’m training in GJ with the biker chicks.
Comment by Mark | 08.30.2008 | 4:34 pm
Well, sounds like the pills suck big time – pills for the pills for the pills for the illness!!! :-O Good that Susan is off some of them for the time being. Amazing that she still wanted you to get to go to Leadville even after her accident – you two are a formidable team.
All the best,
Mark
Comment by BellaCroix | 09.2.2008 | 1:18 pm
Wow, those “Go ahead, pick a fight” girls are hot. Were they riding or just there to distribute water bottles and Gu?