What Passes for Normal
I know a lot of people want to know how Susan’s doing, and most of you don’t want to wait until I finish writing my story about the TriathAlon to find out.
Plus, the two stories don’t go great together.
Last Wednesday
To really understand where things stand for Susan’s treatment, we’re going to have to jump back about a week, and then follow the timeline forward. I’ll try not to bog myself down in the details too much.
Last Wednesday, Susan had a CT scan, to find out to what degree the tumors have come back in her lungs and liver (and, potentially, elsewhere).
A couple years ago, a test like that would have freaked the two of us out beyond belief. Now, it was just another test — an indicator not of whether there was damage, but what kind of treatment the damage warranted.
But we still made a rookie mistake: we expected that we already knew all the possible outcomes.
Last Thursday
On Thursday, Susan was scheduled to have a bone scan, to find out whether there were any new tumors growing in her bones.
But before she could have the bone scan, Susan’s oncologist called her and told her to come down right away. “You’ve got blood clots in your lungs. These can be fatal.”
I got there before Susan. I’m not afraid to drive fast when I need to.
The doctor told us that Susan’s surgery, combined with her reduced activity, has probably caused blood clots to form in her legs. These have migrated to her lungs. If they had continued the trip to her brain, the clots would have killed her.
But they didn’t. So it’s a good thing we found those clots, while we can do something about them. Namely, we’re ramping up the coumadin to a much higher dosage (Susan already took a little bit each night to keep clots from forming in her port-a-cath), and a daily Lovenox shot in the meantime while the coumadin spools up.
Two quick observations. Did you know that the active ingredient in coumadin is the same active ingredient as in rat poison? Nice. Also, did you know that the copay for Lovenox is practically as expensive as crack?
Anyway, the blood clot scare is now behind us, and we got a bonus piece of good news: the CT scan also shows that the tumors in Susan’s lungs are not growing fast at all.
Yes, around here, we consider “very slow growth of the multitude of tumors in your lungs” good news, because that means Susan doesn’t have to go on chemo for now. Hormone therapy instead: stuff to block estrogen production in her body, since estrogen’s what Susan’s kind of breast cancer eats.
Yeah, cancer eats. (At least Susan’s kind of breast cancer does.) But only certain things — estrogen, in this case. So one of our strategies is to try to starve it.
Last Friday
Thursday evening, Susan started having a tough time lifting her left leg, and when she put weight on it, it would buckle.
By Friday afternoon, she couldn’t walk at all without use of the walker.
There should be a law against having cancer progress on you during weekend hours.
Monday
Monday morning, we called and wormed our way into an appointment (our original appointment for Monday had been canceled since we spent hour upon hour with the oncologist on Thursday).
Not surprisingly, Susan’s new trouble makes good sense in the context of the tumors she’s got in her pelvis and hips. So this Wednesday, she’s going in for an MRI to get a better idea of what kind of structural damage has been done (if any), and what we ought to do about it. Radiation? Surgery? Nothing?
Who knows?
We also learned one by-the-way piece of good news: the bone scan shows that there appear to be no new tumors growing in Susan’s bones.
In other words, apart from the bone damage caused by existing tumors, things are going pretty well.
Yeah, that’s right. Around here, this is what passes for “going pretty well.”
Comment by Stephen | 06.23.2008 | 11:17 pm
Highs and lows, you have the strength and fortitude I can only aspire to. Love to your family Eldon. Oh, yeah, looked like a fun Triathalon weekend. I hope you got Dug and the gang to help clean up.
Comment by pinkbike | 06.24.2008 | 12:39 am
Hang on to the good news, and keep fighting, Susan, stay strong. Collective prayer is mighty powerful, and you’ve got an army out here.
And Fatty, fantastic news about the raffle $$ – woohoo!
Comment by Jenn @ Juggling Life | 06.24.2008 | 12:42 am
I’ve been on this rollercoaster with my mother and sister. You do an amazing job of explaining it. You’re family’s lucky to have a husband/dad like you.
Comment by Dad and janel | 06.24.2008 | 2:02 am
Read you blog this morning and the news about Susan sounds encouraging. We are glad that there are lots of people on top of all the issues. Glad to hear your weekend outing was a huge success, especially the fund raising! I am a little disappointed that I didn’t win. Janel and I would have looked really cool riding between the coastal towns in southern Portugal. Our prayers and thoughts are with you daily and several times during the day.
Elden would you consider doing another raffle when we return home for a new full size 4-wheel drive chevy pickup, also include a life time gas credit card. I have lots of hunting and fishing places to check out.
Dad
Comment by Swedoz | 06.24.2008 | 2:10 am
Keep fighting. You are both amazing people.
Comment by Mark | 06.24.2008 | 2:43 am
I’ve been reading your blog for a little while now and really enjoy your cycling anecdotes. I’m sorry to hear of Susan’s illness. The clots sounded a bit scary but good that you caught it early. Keep fighting you guys. All the best.
Comment by Big Mike In Oz | 06.24.2008 | 4:19 am
Man, I’m the guy cracking jokes while the paramedics are trying to decide what to treat first; the gapping hole in my scalp or the extra joint in my forearm. Now that you know how light hearted and positive I am I’d like to say that your level of emotional bouyancy would make Anthony Robbins sit up and take notice.
And with an attitude like that Susan has already won the fight against cancer.
Comment by Lins - Aust | 06.24.2008 | 4:30 am
I’ll have to read your post again. There were so many ups and downs I’m not quite sure how it ended. If I’m in a blur then how must you all feel? All the best to all of you. As always.
Comment by Rob Churchill | 06.24.2008 | 4:55 am
And while all this was happening you organised the Triathalon and made it happen? That’s what leaves me speechless with amazement. Well done to both of you.
Comment by bikemike | 06.24.2008 | 5:11 am
Big Mike said it, laughter is indeed how some of us cope with painful situations. with George Carlin gone, i think it’s your duty, Elden, to pick up the torch and run with it. i’m pretty funny (looking) but i ain’t gots no grammer skills to be done doing this.
on a side note, do they make medicinal crack?
Comment by buckythedonkey | 06.24.2008 | 5:13 am
Many thanks for the update, mate. I sense you wearing a grimace when you typed that. Crikey, but you two don’t half go through it and I wish I could do more that send you both love.
WIN SUSAN!
Comment by Mike Roadie | 06.24.2008 | 5:22 am
We’ll take that kind of “normal” for now…..
WIN
Unite
Live STRONG
Comment by Uphill Battle | 06.24.2008 | 5:37 am
Continued prayers for bits and pieces of good news.
Comment by carolyn | 06.24.2008 | 5:46 am
I’m so sorry that this is your version of good news right now. I wish it was something else.
Thinking about you guys.
Comment by Joni | 06.24.2008 | 5:50 am
Praising the GOOD. Grateful you are embracing it.
Being positive and keeping your humor is important. Yesterday as my sister and I sat by our Moms bedside where she was required to lay still on her back for six hours after a heart cath. to check for blocked artery’s b-4 her heart valve surgery….SHE needed to smile. SHE needed to be normal.
She has endured aggressive cancer on her head that they say is from radiation as a child to take care of a spot on her face (what in the heck were they thinking back then?) which they cut a hole about 5 inches across both ways right down to scraping her skull. That sound will be forever etched in my memory. We have to wash it daily and fill it with cream and bandage it. She then found out about the collapsed valve, she was told her kidneys were dehydrating and now she has a blocked artery which will require the more invasive surgery this nurse of 47 years was hoping to avoid. All since March!
Anyway…the point of that whole rant was that she needed to have some “humanness” and humor in the greyness of her situation. She is tough, she is informed, and she is hating this entire situation. Sometimes it is not what we see from the outside. I am sure the nurses were appalled that we were silly, and we made her laugh. We were not intrusive to other patients, but we focused on Mom and tried to make that six hours the most tollarable we could. It is what you do for the ones that you love. You make their time comfortable and easy. You make them feel like they are not intruding on your time. You make sure that they dont carry guilt about how your life has changed because of what you have to stop and do for them. You remind them that they would do the same for you….and more…if the tables were turned. And you ignore the grumpy nurse when she gives you dirty looks and you make sure that she does not have an ounce of effect on your Mom :)
God bless you Fatty for helping Susan thru this. God bless you for being an active participant in every aspect of these trials and not for one second allowing her to go thru this alone. Okay, I have rambled enough and I am sorry for that…..I guess that in one way or another almost all of us can relate in one way or another to bits and pieces of what your family is living thru.
You have a gift of verbalizing it.
Thanks for sharing all you do as you are really helping so many of us that need to keep things in perspective and celebrate all the little steps rather than dwell on the big picture.
Susan and your family are an inspiration. Win Susan & Win Family.
Be Blessed!
Comment by Beth | 06.24.2008 | 5:51 am
Sending many, MANY good thoughts and prayers your way.
Comment by Wine Dog | 06.24.2008 | 5:57 am
Normal is subjective.
Win Susan.
Comment by Bjorn 4 Lycra | 06.24.2008 | 5:58 am
Your right the Susan update is far more important to Fatty’s Army right now. I marvel at your ability to write this stuff and I consistently learn from you and your family about the right way to deal with the bollocks that cancer is. While I am sure it is not your intention it helps me and I am sure others put things into perspective. There is good news in the timeline and it is important we see the positives. Keep on keeping on Susan we love you.
Comment by Bjorn 4 Lycra | 06.24.2008 | 6:01 am
Oops should have read Joni’s message properly first she has put it much better than I have. So what Joni said doubled.
Comment by Lowrydr | 06.24.2008 | 6:29 am
Thoughts and Prayers headed your way, as you all are always in our thoughts here.
Comment by buckythedonkey | 06.24.2008 | 6:31 am
Indeed. Well put Joni.
Comment by jkrunning | 06.24.2008 | 7:01 am
Thanks for the update. Hope all continues to stay positive.
Comment by neca | 06.24.2008 | 7:17 am
Not sure how you two are staying sane – this seems to have more ups and downs than a really bad soap opera, with little of the humor. I hope Susan is back on her feel real soon.
Glad the raffle was such a success!
Comment by sans auto | 06.24.2008 | 7:30 am
You’re in our prayers.
Comment by Lori | 06.24.2008 | 7:37 am
2:01
Comment by Orbea Girl | 06.24.2008 | 7:45 am
Update on Susan’s progress much appreciated and I love the way you can find silver linings in every cloud.
Best wishes to all the FC Family
Comment by IamMatt | 06.24.2008 | 7:46 am
Win Susan
Win Nelson Family
Way to go for keeping the attitude positive.
Comment by pat | 06.24.2008 | 8:05 am
I know people have a way of rising to meet adversity, and that many people never even begin to tap their inner reserves of strength.
Still, I can’t help feeling like you and Susan and your family are made of some unusually tough stuff. Your blog is truly inspirational.
Thanks for continuing to share with all of us. Y’all are in my thoughts.
Comment by lady clay | 06.24.2008 | 8:09 am
I’m sorry, Fatty. I’m sorry, Susan. That just sucks. Best wishes and love as you move forward.
Comment by EuroJoe | 06.24.2008 | 8:20 am
I am amazed at your positive attitude, you sound like such a strong family, congratulations on the fund raiser, it looked like a blast! All the best. S
Comment by FliesOnly | 06.24.2008 | 9:03 am
There’s really not much I can say…other than thanks for being so honest with a bunch of strangers. My wife and I wish you and yours nothing but the best, and we will continue to send as many positive waves in your direction as we possible can. One never knows.
Comment by Hamish A | 06.24.2008 | 9:14 am
You’re all never far from our thoughts over here.
Sending you positive thoughts and good wishes.
Win Susan!
Stay Strong Elden.
Comment by Pammap | 06.24.2008 | 9:20 am
Even a little good news is Good News nonetheless! Glad to hear that nothing bad is making progress but that Susan is. Sweetness for sure.
2:01 for Susan.
Comment by Kino | 06.24.2008 | 9:23 am
Fatty,
I have only begun reading your blog in the last few months and I am now utterly in awe of you Susan and your family. I don’t know how you all do it.
The attitude to the diffciulties you face and the unbreakable spirit you display in both your words and your deeds are truly inspirational.
As far as I am concerned there must be something special in your writing given that it is able to make a fat 40 something part time cyclist from the other side of the Atlantic such as myself, smile and weep all in the space of a few sentences.
Your deeds and those of Susan in your stand against her disease speak for themsleves.
My very best wish to you and yours from me and mine
WIN SUSAN !
Comment by Fremont Mike | 06.24.2008 | 9:25 am
Elden,
Take the good news wherever you can find it. Your family is in my prayers.
As for the triathlon, I was bummed. Not because I didn’t win, but because I couldn’t make it out from the bay area to attend. It sounded like a LOT of fun.
Keep up the good fight. Win Susan!!!
mike jones
Comment by Rocky | 06.24.2008 | 9:27 am
Damned mean cancer.
Comment by chtrich | 06.24.2008 | 9:28 am
WIN!
Keep on Keeping on!
Comment by Lisa B | 06.24.2008 | 9:59 am
You’re in our thoughts and our hearts. And since I can’t send you laughs, good times and goofiness (besides, that’s your job, Fatty!), I making another (matched!) donation to LAF in Susan’s name. Wish I could do more.
Comment by M2 | 06.24.2008 | 10:06 am
Keep fighting the good fight.
WIN Susan! WIN!
Comment by Sprite's Keeper | 06.24.2008 | 10:31 am
Every day you stay positive is another fight you win.
Keep fighting!
WIN Susan!
Comment by Heatherann | 06.24.2008 | 10:54 am
I’m so glad that you got some “good news”. Stay strong. You still have my prayers.
WIN SUSAN!
Comment by kawika | 06.24.2008 | 11:30 am
only good thoughts. win susan!
Comment by MAJ Mike | 06.24.2008 | 11:31 am
*Good vibes*
*Good vibes*
*Good vibes*
*Good vibes*
*Good vibes*
*Good vibes*
Comment by NW | 06.24.2008 | 11:54 am
If I were going to say anything, it would be very similar to what Sprite’s Keeper and many others already said. You and Susan are fighters, obviously. Keep fighting and WIN SUSAN!
Comment by mamajenny | 06.24.2008 | 12:01 pm
Wow. I’m praying for you guys.
Comment by tim | 06.24.2008 | 12:58 pm
thanks for the update
can’t be easy talking about that stuff.
luck and love to you all
Comment by Adventure Nell | 06.24.2008 | 1:15 pm
Thanks for the update Eldon. Sending eHugs and prayers your way.
Comment by Grizzly Adam | 06.24.2008 | 1:52 pm
Hey that is good news. Keep your heads up, keep moving forward, and WIN!
Comment by Joe | 06.24.2008 | 2:17 pm
Good news is good news!!!
Thoughts and prayers are with you guys every day.
Joe
Comment by aussie kev | 06.24.2008 | 3:07 pm
pleased to hear things are going “pretty well”
k
Comment by Clydesteve | 06.24.2008 | 3:36 pm
2:01. Still ringing on my watch daily. And a lot of people know why.
Comment by Mrs. Coach | 06.24.2008 | 4:02 pm
You guys are awesome. Thanks for continuing to post. We’ll keep you in our prayers.
And sorry we missed the triathalon, it sounds like it was a success.
Comment by AlicesYellowPorsche | 06.24.2008 | 4:15 pm
*good karma*
*good karma*
*good karma*
*good karma*
*good karma*
Normal can change at the drop of a hat. For bad, and for good.
WIN Susan, and WIN Family.
Comment by Barb | 06.24.2008 | 4:32 pm
You guys are the definition of LIVESTRONG.
Comment by Jaime O. | 06.24.2008 | 7:40 pm
WIN Susan, WIN!!!! Fatty, I hope our thoughts and prayers can be felt.
Comment by Co | 06.24.2008 | 10:14 pm
I agree with Big Mike in Oz – Susan’s already won. Now we all pray that everyone else can win by having her stay around for a long and fruitful life.
Comment by Pam | 06.25.2008 | 6:03 am
Several posts ago you asked for your readers’ opinions on writing a book. I don’t know if anyone already suggested this, but…how about you and Susan write a book together. Not for us, but for your kids.
I hope normal gets better. Praying daily (I first typed daying praily!)
WIN Susan!
Comment by rexinsea | 06.25.2008 | 2:59 pm
GREAT NEWS indeed. Love the emphasis on the positive thoughts. You guys continue to be an inspiration.