First Round
A Note from Fatty: This is the latest post in my effort to tell the story of Susan’s fight with cancer. Eventually, this will be part of my next book, Fight Like Susan.
Neither of us could sleep the night before Susan’s first chemo treatment. We had too many questions about what it would be like.
How sick would it make her feel?
How soon would it make her hair fall out?
Would she always be sick from now on, or just right after the chemo?
And the biggest question of all: How would we know if it was working?
The problem was, the only question we had any kind of answer for was the trivial one: Her hair probably wouldn’t fall out in any serious way until sometime after the second treatment. For everything else, our answer was the terrifying unknown: “Wait and see.”
The Treatment
The people at my new job were unfailingly supportive of my need for some work flexibility. Maybe part of it had to do with my manager already being a good friend of mine, and my manager’s manager being one of the almost absurdly-nice Osmond family (yep, I had lived in Utah for most of my adult life, but never met an Osmond ’til I moved to Washington).
Or maybe it’s just that most everyone has had contact with someone with cancer, and so want to help.
In any case, there was no question about whether I’d take the afternoon off to take Susan to the hospital for her first treatment. Eventually, we figured, a friend or family member would take her and I could do my job. But for this first one, it definitely needed to be me.
The thing is, though, there just isn’t much to tell about a chemo session.
Susan sat in one of the big comfy chairs they had set up for chemo. A nurse plugged the IV bag full of the chemo stuff – being very careful not to get any on anyone’s skin, because it burns — into Susan’s portacath.
Geeky sidenote: A portacath is a permanent little plug doctors install in people who are either going to be giving a lot of blood or getting a lot of IV’s, or both. Imagine a little drumlike thingy right under your skin, somewhere on your chest. The needle, instead of going into your vein, goes through your skin and into the drum, which then leads to a vein. Having one makes it a lot easier for the nurse to hook you up to the IV. They’re a great invention; Susan had gotten one implanted at the time of her mastectomy.
Once hooked up to the IV, we sat there, waiting for something to happen.
Nothing happened.
We tried to talk for a while, but we were both too anxious to talk. Eventually, Susan got out the little portable DVD player we had brought along, and watched a TV show — Buffy the Vampire Slayer, I’m pretty sure.
In a little while, we were done.
Quiznos
The thing is, Susan felt fine after the chemo. Seriously, just totally fine. The doctor had said that — rarely — patients are able to go about their daily lives without being seriously affected. Maybe we had gotten lucky and Susan was one of those people!
I felt great. And, to be honest, hungry.
So I suggested we stop by the Quiznos (for those of you who don’t know what Quiznos is, it’s a toasted sandwich chain in the US) and split a sandwich. I don’t remember what kind of sandwich we got, but I remember it was really good.
By the time we got home ten minutes later, Susan felt sick.
Ten minutes after that, she had thrown up.
Ten minutes after that, she felt worse than she ever had in her entire life. Curled up in a ball and crying, laying on the bed, Susan was throwing up over and over, and then she was dry heaving.
And when she wasn’t retching, she was saying that she hated Quiznos worse than anything in the world.
Help
Of course, it wasn’t really Quiznos that was at fault. Susan and I had split a sandwich and I was fine. It was the chemo, pure and simple.
The anti-nausea medication wasn’t working. Obviously.
I called the number for the oncologist. A nurse specially assigned to be the cancer patients advocate and answer-person got to the phone, and I told her what was going on.
“Some people do really well with some anti-nausea medications, some do beter with others,” she told me. But we weren’t out of options. Not even close. She called in a different medication to the pharmacy. I went and picked it up.
No luck.
So she called in a third anti-nausea medication. This one was new, she told me. And expensive.
Not-so-geeky sidenote: You may have noticed that I’m not mentioning specifics about medication here, nor disclosing doctors’ names. In large part, that’s because I’ve learned a pretty important lesson about talking about medication and doctors on the web. Specifically, no matter what you’ve done, there’s someone who will tell you (with great conviction and often considerable condescension) that you did it wrong; you should have used this doctor and that medication. Frankly, I’m not interested in having those conversations. They weren’t helpful when Susan was alive, and they certainly wouldn’t be helpful now. Everyone’s case is different. Knowing who and what Susan worked with won’t help anyone, any more than my hearing that I should have done something I didn’t do will help me.
I went and got it. If I’d had to pay, it would have cost $50 per pill. Somehow I would have come up with the money for it, but I was glad I didn’t have to.
This one worked.
By the end of the evening, Susan was feeling better. Not great, but tolerable.
It was the best $100 / day expense I have ever had.
Regardless, though, Susan never ate at Quiznos again.
Comment by Turt99 | 03.1.2012 | 2:21 pm
I totally agree with your statement about the meds and doctors. When you are in that situation you have to trust that the doctor you have knows what they are doing and that they have your best interests in mind.
When I was doing the treatment for my Thyroid cancer I figured the doctor went to school and has handled this situation many times, they are much more qualified then I am so I’m going to let them handle it.
Comment by MOCougFan | 03.1.2012 | 2:34 pm
Thanks for sharing Elden. Not sure if this is hard on you, or good for you to get it out, or what. But it is good for me to read. I always enjoy reading your stuff. Even the hard/painful stuff like this.
More than anything, I feel a sense of relief. I’ve often thought, since Susan passed away, that I owed it to her to tell her story, so the kids would know what happened to their mom. I was starting to worry that I wouldn’t remember it clearly, so it’s a good surprise to find that as I write, things come back very vividly.
Of course there’s ache, too, but I lived with that for a long time anyway. And any sadness is compensated by the facts that Susan isn’t suffering anymore, my life is really good now, and when it came right down to it I was able to push aside selfishness and take good care of someone who needed me. Which is a nice thing to know about oneself. – FC
Comment by AToad | 03.1.2012 | 2:37 pm
Hey there Elden,
I have been out of touch with the blog-o-sphere for a while now, though I see Big Mike on Facebook sometimes. Just wanted to say that I still have the bike-chain bracelet that Susan made. I wear it when I am out on rides in the summer and get a weird tan line. It is kind of dirty now– there is a mix of chain grease, dirt, and other assorted crud all over it, but it is a necessary bike ride accessory.
Best regards to you and your family.
Ariane (AToad from back when everyone was on MSN Spaces)
Thanks for checking in Ariane! Seriously cool to see a commenter/blogger from the early days. – FC
Comment by aussie kev | 03.1.2012 | 2:44 pm
WIN,
Comment by AKChick55 | 03.1.2012 | 2:56 pm
Buffy! Oh I love it that the video she may have watched was Buffy. One of the best shows EVER! :)
Thanks for another glimpse into Susan’s and your journey into cancerland. I’m thankful you found a med that helped with the nausea. I’m horrified that the chemo treatment, if spilled on the skin, would burn it. Oh why oh why can’t they discover something less toxic for folks going through treatment? Sigh. Someday, I pray that no one will have to endure this.
Again, waiting impatiently for the book! I plan on buying several copies.
FLS!
If there was ever a bigger Joss Whedon fan than Susan, well…Susan probably had a great conversation with that person at one of the conventions. – FC
Comment by AKChick55 | 03.1.2012 | 2:57 pm
Also, what happened to the weight loss challenge?
To be honest, right now, telling this story is taking pretty much all the energy I have to give. I’ll do challenges and other things when I feel like it. – FC
Comment by jt | 03.1.2012 | 3:25 pm
FatMan,
Regardless of the fact that I’ve followed your story for 5 years and therefore an completely aware that this is history you’re writing, and in spite of the blurb in front of each of these write-ups restating the same, the immediacy and reality conveyed by your writing brings me so much into the moment that your closing sentence
“Regardless, though, Susan never ate at Quiznos again.”
was such a jarring reminder of the outcome that I felt all the same wash of emotions I felt when her battle was over the first time.
It’s a tribute to your writing and an indication to me of how tough this must be on you to put it all down in words, to live it over again. I think this will be a huge help to the many unfortunates who end up walking down the path that you and Susan walked. Once again I’m awed by your strength and strength of commitment.
Fight like Susan,
jt
Comment by Andrew | 03.1.2012 | 3:29 pm
Keep going fatty it is appreciated, and is good to keep us all grounded.
Re the meds and doctors statement. You yet again confirm your a wise man.
Comment by Susan's Sister Christine | 03.1.2012 | 3:59 pm
Elden–I have really appreciated these posts you have written up about Susan. They have been a little hard to read and have made me cry a little, but it has been good to be reminded of all that you both went through. Thank you so much, again, for taking such good care of my sister.
Christine
That is incredibly kind of you, Christine. Thank you. – FC
Comment by DWC | 03.1.2012 | 4:57 pm
Thanks for sharing your story.
I lost my mom to cancer in 1994, and currently share a home office with my 10 year old dog, Millie, who is fighting a losing battle against that big C as well. I spoil her as much as I can, and don’t look forward to the day the tail stops wagging, but do look forward to your book. Keep going Fatty.
Comment by Bee | 03.1.2012 | 5:27 pm
I love that you are able to tell these stories in such a human way. I had one of those explosive laughs at the “hate Quiznos” line, and the rest of the story is just achingly like life. My hat’s off to you, and I’m ready to pre-order that book, now.
Comment by Matt | 03.1.2012 | 6:31 pm
Having been through the same experience of the wife’s first chemo treatment, I’m recalling indeed how banal it all was after the feverish first part where we bombarded our chemo nurse with all the same questions. Luckily, my wife’s anti-nausea medication worked the first time out (they started here on the $$$/day version out of the chute.
The only thing that was really surprising to us in that first appointment was that my wife was staring down the barrel of life with out fresh fruits or vegetables for 3, 4 week cycles plus (ovarian cancer). We’d thought that we would be working to nourish her with greens of all sorts but the dirt and germs just couldn’t be part of the diet. She had come to grips with no sushi but man, no salad really rocked her world. That is until day three of that first cycle at about 5pm when she went felt like all she wanted to do was sleep in a ball for the next 11.5 weeks.
Comment by Liz | 03.1.2012 | 6:49 pm
Elden, I loved how you sometimes included comments that people posted on your blog for some of the chapters of your first book. When you publish this one, be sure to include the comments that your family members are posting on these entries. This is a beautiful thing you are doing for not just your kids, but your grandchildren, great grandchildren and beyond (and if you think I am exaggerating, my husband is researching family history and has reviewed some letters more than 100 years old!).
When I went through chemo, someone must have just written an article that appeared in every newspaper in the country advising that the scent of lavender helped curb chemo side effects. I started getting gifts of lavender soaps, candles, lotion, etc. etc. from everyone I knew. It was so overwhelming, I still can’t stand the smell of lavender. So I totally understand the Quiznos thing.
I love your story about lavender — plan on seeing that comment in the book! (And yes, comments will be a critical and prominent part of the book). – FC
Comment by Tom S. | 03.1.2012 | 8:22 pm
Totally agree with you about the meds and doctor thing, if cancer was an absolute a to z treatment we would have found a cure a long time ago.
Comment by Michael | 03.1.2012 | 8:50 pm
Wow, AToad. Long time no see. Where are you writing your wonderfully narrative and literary blog posts these days?
Comment by roan | 03.1.2012 | 8:51 pm
Elden, I’ll agree with you on people second guessing meds & doctors, shouldn’t be done.
But to bring up a current topic, pharmaceutical companies that stop or limit tried and true medications because the drugs are NOT as profitable as the BIG BUCKS PILLS makes my blood boil. I’ve been down a similar path and lost a loved one and to think that a company would protect a product but severly limit production for $$$…sucks.
Sorry for the rant.
Comment by davidh-marin, ca | 03.1.2012 | 9:25 pm
So nice to hear from Susan’s sister Christine.
So frustrating that it has taken Susan’s story, and her life to bring this Team Fatty all together. I like to imagine that we might have come together about a common issue other than Cancer, but Cancer has been our impetus. I’m glad that we HAVE come together, and I look forward to all our campaigns. Thank you for your story, your efforts, and your bare truths, through these posts, to remind everyone what we are capable of.
Livestrong.
Comment by Kari | 03.1.2012 | 10:16 pm
As a childhood cancer survivor I was too young to be able to swallow pills, so I wasgiven the next best thing my parents could think up: they crushed them in a small cup and mixed them with different drinks to cover the bitter taste. To this day I cannot stand a single one of the drinks they used. (Even just the tiniest sip will make me gag now if I drink plain milk, strawberry milk, cold chocolate milk, Pepsi, Dr. Pepper, Cherry Coke, Cherry 7-Up, Diet Coke, etc) A friend of mine that is also a childhood cancer survivor I know used to have hers mixed into chocolate pudding and cannot handle anything with chocolate now and another could not stomach anything but apple fritters during the chemo nausea. Now he cannot stand them because he ate so many throughout his treatment. We all laugh about it now because we understand so fully the food aversions it creates in people when something so horrific and foul as cancer is linked so strongly in our minds with even something as innocuous as everyday foods or drinks.
Comment by Nurse Betsy | 03.1.2012 | 10:47 pm
Thanks for sharing your’s and Susan’s journey. I know it will help a lot of people who are going through the same thing.
Comment by Allison | 03.1.2012 | 11:11 pm
I’ve been reading your recent posts, and I have to say I am stunned by your sister’s talent. Her paintings are so beautiful. What an amazing artist she is.
Comment by Tim | 03.2.2012 | 5:03 am
Sausages. That’s all our 5yo leukaemia patient – now recovered at 10 – wanted to eat. What blew me away was a)how different every cancer case is and b) how hard the oncology world works to make things better for their patients. My little bloke’s chemo mixes were always being tweaked here and tuned there to give the best result for him and to beat the disease. Compelling reading, mate – thanks for sharing.
Comment by Micha Ordway | 03.2.2012 | 7:00 am
Fatty:
I haven’t been reading your blog regularly lately but happened to see this series. Its commendable that you can write this at all. Wow.
Comment by centurion | 03.2.2012 | 12:26 pm
To Susan’s Sister Christine,
Me too.
Comment by AKChick55 | 03.2.2012 | 12:53 pm
Had a coworker come down to my cubicle (he reads your blog too) and told me I had just gotten slapped down for selfishly asking you about the weight loss challenge (and I add my own adjective: insensitive.
My sincere apologies! I was just curious and it wasn’t meant to come across as pushy or anything of that nature. I didn’t even THINK (obviously) about how it would come across after you’ve poured your heart out again. :(
I can’t even begin to imagine how draining it would be to write these posts OR be writing an entire book about such a profound and emotional experience that happened very recently. My hat is off to you for your strength and courage in doing this.
And finally, I’m extremely sad that I didn’t get the chance to talk to Susan about Joss. My husband and I are still bummed about the premature cancelling of Firefly. I love meeting fellow Buffy/Angel/Firefly fans (and Joss admirers). I’m sad that I won’t be able to buy one of her famous bicyle chain bracelets. You and your family are some of the most amazing people I’ve read about and I’m so honored to be a member of Team Fatty.
Of course you didn’t mean anything bad, and I didn’t take it as bad (or insensitive or anything). Writing this kind of thing just takes a lot, and I’m afraid even my comments afterward are kind of short. I’m sorry it came across as a rebuff or anything like that.
I’ll be getting to the contest soon. – FC
Comment by Paul Guyot | 03.2.2012 | 1:03 pm
I cannot read any more of this.
Comment by geo | 03.2.2012 | 2:58 pm
Chemo effects or not, I agree with Susan about never eating at Quiznos, and that Buffy is a fun show.
(and these posts have been awesome)
Comment by Cali_Lady | 03.2.2012 | 3:09 pm
Elden/Fatty: Thank you so much for writing this stuff down. It will help so many people in so many different ways..
Comment by Erik Stoneham | 03.2.2012 | 3:26 pm
I also agree with your statement to leave the doc’s and med’s out of it. As an EMT I am always forced to listen to that and it really makes no difference. I am glad you are sharing this with us all and I am soooo looking forward to reading your next book. I am expecting a tear jerker with ups and downs and perhaps a nice bike side story…
Comment by Sean Morrissey | 03.3.2012 | 10:56 am
Thank you so much for telling this story.
Comment by Lori | 03.3.2012 | 5:15 pm
This is a great gift to your kids, brother. Not only do they get to see their mom again for a few moments, they get to see you back then and your fun/funny marriage to her. You two were just so geeky, even in the hardest time. All that Joss Whedon, LOTR, XFiles.
I think they’ll want to know about that.
I’m so glad life’s good right now and you have the strength to write this. Lisa deserves credit for some of that.
Hugs to her.
Comment by Kupe | 03.3.2012 | 6:43 pm
I remember that after my chemo sessions for testicular cancer all I could eat were Mars bars. They say that you will loose weight when on Chemo, not me, I managed to put on 15-20kg’s in a 4 month period.
I also remember that certain smells affected me, my sister and mother were using a body wash that every time they came near me, I wanted to throw up. Still to this day which is 20 years later I even have to get get a whiff of a some smells and I get nauseous.
For those readers who have not been affected by cancer, here is an insight that hopefully you will never have to go through. It is one of those diseases that not only impacts the patient but also the those that are emotionally connected.
Fatty, thank you.
Comment by Chris | 03.4.2012 | 7:20 am
I’ll be honest, I don’t know how you manage to write her story. Curious how long it takes to tell some parts.
Comment by Marty | 03.5.2012 | 9:01 am
I, too, lost my wife to cancer–five years ago. Not a day goes by that I don’t think about her. As painful as it must be to put this down on “paper,” it is a wonderful thing you’re doing. You are giving your kids a memory of Susan that will never fade. You are also creating a living, permanent memorial to her that will serve as an inspiration to thousands of people for years to come.
I wish I’d have done this.
Marty, if you’ll take the time to write, I think you’ll find — as I am — that the memories come back pretty vividly. Maybe you should give it a shot. – FC
Comment by AKChick55 | 03.5.2012 | 10:51 am
Marty – if you happen to check the comments, it’s NOT too late for you to write about your wife! I don’t think it’s ever too late. Just felt the need to tell you that.
Comment by Clydesteve | 03.5.2012 | 5:00 pm
Wait, Joss Whedon, LOTR & X-files are geeky?
Next thing you know someone will say Stargate is geeky.
Elden – I admired Susan, not knowing her, because of what you said about her in past posts. But when you revealed that Susan liked Joss Whedon stuff a couple of years ago, I liked her even more.
Takes one to know one, I guess.
Comment by cece | 03.5.2012 | 8:35 pm
Elden….all I can say is that you and your family have a lot of courage. It is hard for me to read this as I have had soooo much cancer in my family…it is reliving it over and over that is hard.
But we all need you to put it all in print for us and I am thankful you are writing such an inciteful book to share with others. thank you.
cece
Comment by Trey | 03.6.2012 | 6:16 am
To the folks who paint (WIN w/ teardrop) at the top of every nasty climb in San Diego County…thank you! It always make me drop a tear, for Susan and the FC/Cancer family which I am sadly also a part of. Peace a safe riding.
Comment by Marlys | 03.7.2012 | 12:00 pm
Fatty,
Keep on writing your book and take your time with the other things. You show much grace and strength. I went through a different kind of trajedy eight years ago.. You are so right. Every situation is different and sometimes the comments by others seem to have their own agenda. Look at all the good you have done. I know Susan is proud of you.
Comment by Mamasue123 | 03.8.2012 | 2:13 pm
My brother’s food choice when he was getting chemo was tacos!! The spicier the better, even though they told him not to eat spicy food. I’d get in trouble if I didn’t bring the hottest stuff. Thanks for writing this, I know it cannot be easy. 20 years have passed since big Bro passed and I still miss him…. he used to fix my bike for free you know!! :(