Cancer is not for wimps!! A letter to the world.


It is hard not to reflect on your life when you have taken the journey I have over the past 38+months. I struggle with not letting cancer define me, even though in all honesty, it has completely redefined who I am. And I know that in writing this, I will likely offend all of you at some point, or make you sad, or make you angry, or all of the above. Please know that my intention is none of those things.  I am not writing this letter so that you will take pity on me or treat me with kid gloves. I am simply trying to be honest and say all the things that I never say when you ask me, "How are you doing? No, REALLY, how are you feeling?" Quite honestly, you probably don't want to know the real answer to that question, and you'd get tired of hearing me rant about what it's like to be "the new me" anyway. 

You're right, I look pretty good right now. Thank you for noticing. My hair has grown back (and it is an awesome color); I have color in my cheeks again; I don't look like a sick cancer patient (because I'm still up about 35 pounds from when I started this journey. What I wouldn't give for clothes that fit). If you just met me, or passed me on the street, you would never know the road I've traveled. And that is weird to me. There are at least half a dozen people that I know now who didn't know me "before." Throughout my life, I will continue to meet people along the way who weren't there during the treatments that knocked me on my ass. They've never read what I am writing. They don't know that what I've been through has re-shaped my view of the world. At this point in the journey, cancer feels like such a defining experience that I feel like I need to wear a badge that says, "Survivor" or "I kicked cancer's ass" or something. Shout it from the rooftops? Maybe. Will it ever be something I don't feel compelled to start a sentence with? (I don't actually start my sentences with this, by the way, but there are so many times I feel like I have to). So maybe what I'm really trying to say is, you just never know the journey that anyone has been on or is currently traveling. Kindness moves mountains...maybe we should all start practicing more of it?

When I say, "I'm tired" in response to your question, here's what I probably mean:
a) I AM EXHAUSTED. I WANT TO CURL UP IN A BALL AND DIE FOR A FEW DAYS. I completely understand that I still have my family and home to take care not helping. Some days it takes everything I have in me to feel like a functional human being. And I still cannot do half what I used to be able to do, that frustrates me.  Folks, cancer knocked me on my ass. And then backed up and ran me over. And then did it again and again and again. The chemo regimen I had is called "the red devil" for a reason. There are days where I really and truly cannot get out of bed...for no real reason other than my body won't function. Still. And the PTSD-and/or-early onset chemotherapy related osteoarthritis that makes my body scream, its so loud it wakes me or keeps me from sleeping, pain induced insomnia doesn't help. Or the nightmares that ravage my mind and leave my pillow soaked.

b) EVERYTHING HURTS. Everything. And thyroid cancer turned lymphoma is a pain in the ass. Not sure why one day is better or worse than another. If I sit or stand too long in one position, I cannot move. Watching me get up from a seated position (at a restaurant, off the couch at home to go to the bathroom) is HILARIOUS. It takes sometimes 10-100 steps for my hip/knee/back/leg to actually function properly so I don't look like a 90-year-old hobbling down the hall. At least it makes the kids laugh when they see it.
c) I forgot the question, but you were probably asking how I was doing, so I reply with my canned answer "I'm just fine, thanks".

Here's the thing, every one "does" cancer differently. No two journeys are the same, and I am only speaking of mine. Do I wish I could dance the night away, right now? Sure. Do I wish I could have run a marathon during treatments? Actually, yes. Am I happy if someone you know has the energy to run a marathon during the middle of chemo? YES! I think that's terrific. But THAT'S NOT MY STORY. Chemo made me want to die. Curl up in a ball and die. I remember one stretch where I didn't get out of bed for SIX DAYS. I was either face down on the bathroom floor because I literally could not move or curled into the vetal position on my bed. And I'm sure that I'm so tired now because I wasn't very active during treatments, but save the lectures because I was too busy trying not to die to give a crap about getting exercise. I was way too exhausted to climb the stairs some days. Laundry room down stairs simply didn't see me for months. And I wish I was exaggerating.

When I say, "chemo: the gift that just keeps giving" in response to your question, I might mean a variety of things:
a) I am stupid. HOLY CRAP, legitimately stupid. I have NO ability to retain information. I cannot hold a conversation with anyone, especially with children mine, yours hers, and all others simply left in my care, or  "well-meaning authority figures". It hurts me to listen to myself talk about books with kids now because half way through, I forget what we're talking about. Chemo brain rocks!
b) I am so ADD now, it's frightening. Squirrel.
c) Osteoarthritis BLOWS. Enough said. Okay, maybe not enough. I am too young to have this old woman's disease that bends my back and cripples my hands and feet. IT SUCKS. 
d) It's hard to breathe sometimes...and not because I was trying to exercise. Probably because chemo damaged my heart and radiation damaged my lung.  
e) I can't feel the bottoms of my feet ever. Or my hands sometimes. I no longer have fine motor skills. Opening a jar??? Bwahahaha. That's a good joke.
f) I have a heightened sense of smell. (No kidding, school science fair, I was a judge,  in the gym. The minute I stepped out of the choir room (where we'd received our instructions) door, all I could smell was sugar, pizza, and sweat. Had to leave to vomit over the stair railing outside).
g) My tastebuds are shot (which really blows since I can smell everything now).
h) My hair has grown back thicker (yeah), curlier (boo...chemo curl sucks), and with no gray (yeah...although I color it so you wouldn't be able to tell anyway). Doesn't make any sense to me, but there's the truth of it.
i) I'm sure there are many other things which I'm just not remembering right now...because I'm stupid.

When I say, "I hate everyone and everything, or I'm just fine thank you," I probably mean:
a) I hate everyone and everything.
b) I am so tired.
c) I am sad.
d) I am angry.
e) I do not understand why everyone still cares about stupid, unimportant stuff. (Okay, I really do know, but I get frustrated when forced to confront someone who is taking dumb stuff way too seriously).
f) I'm trying not to say that my PTSD has kicked in and I'm trying to hold it together.
g) My body hurts, not in the general achy sense but it hurt, literally.


I'm angry? I'm sad? 

"But why? You're all better now, right?" Here's the thing: PTSD is a bigger bitch  than cancer.  And I try really hard every day not to let it get the best of me. Or to let you see it. But the reality is, I am an emotional wreck. WRECK. I've cried twice while typing this post and I haven't even gotten to the stuff that's sad. I am at least able to see the panic attacks coming on now, but that doesn't mean they are any fun. Ask the family about the one I had out for a drive while we were out in the middle of nowhere. I'm sure that the four of them thought someone was going to die. I only have a vague recollection of the event, but it scared me. The best one was trying to have a rational conversation with my ex about my daughter going to camp, and My husband telling me to calm down when I wasn't actually upset, sent me into a crazy screaming tail spin that threatened to kill my marriage. Because my brain was telling me that the panic attack would go away if I could go in my room and hide like it was emergency exit...just to make the noise in my head stop, he followed me down the hallway. I screamed..... Not kidding. The kids sitting in the room next to me were really freaked out.

So, besides PTSD (which, is not just for soldiers, BTW, and which I really need to write about in a post all it's own), what makes me sad and angry?


Ignoring all the "what if the cancer comes back?!" "What if I don't see my kids graduate/get married/grow up?" "What if, what if, what if?" questions that constantly swirl in my head, here are just a few things that I think about... 

I feel guilty about everything my family has had to go through, and the damage that it's done to their mental health. None of us will ever be the same, and whether that's a good thing or not, the trauma wrecked havoc and did it's share of damage. 

I've watched friends from treatment, after another, every month. I am angry for....being alive?!  How is my life worth saving whereas there's aren't?

I get sad when I think of all the things that I want to do that I could have, and maybe should have, done long before now. Why was I waiting to check those things off the bucket list?

I lost a year and a half of my life. Literally. I don't actually know how old I am anymore. I answered the question wrong the other day when someone asked. Seriously. I played it off as I was teasing, but had no idea and had to count.

Cancer is isolating. Whether that's by force, or mitigating inherent health risks of hanging out with people who carry germs, I barely saw anyone during the entire time of my treatments. And now I'm so used to hanging out in my room, by myself, it's really hard for me to remember to be a member of a family, community, to be a friend. I struggle with getting outside the shell that cancer created.

Treatments have bankrupted us. Not just emotionally, but financially as well. Actually bankrupted. We filed in January.

People including my husband treat me like I am broken,or lost or stupid or that I need someone to talk for me when all I really need, is for them to be quiet to truly hear.

I don't know if I am a survivor. The doctors sure don't call me one (I have to wait 5 years for that), but I feel like I should surely get a label for all that I've put up with! Or a special place in Heaven. Or a better dessert than everyone else. But I also get twitchy anytime someone calls me a maybe they're jinxing it for me. 

I think I'm a different person. And I desperately didn't want cancer to change me. But the reality is, while cancer did not change me, living through it has definitely made me a different person. And that makes it feel like I've let cancer win. I struggle every day with feeling like I'll always be "that cancer patient" in your eyes. And my own.

I am nesting in reverse. I am getting rid of EVERYTHING. And medical/science major me who took enough psychology classes in college can see why I'm doing it. I know that I'm doing it because I don't want my family to have to sort through all my things if I were to die. And because things don't mean anything to me anymore. But I can't stop.  Just spent the last two weeks giving away ALL of my jewelry.

I am so mad that there is not a cure for cancer. And that people are still diagnosed with it every day. Research, people, research!!!  I think the government has a cure and we are kept sick on purpose, so we remain loyal to the hand that feeds us.

I get so angry when I see that you are not living your dreams. Or you are unhappy. Or you aren't saying, "I love you" to those that matter. Or caring so much about things that don't matter. SERIOUSLY! Life. Is. Too. Short. And I know that unless you've lived through something like I have, you understand the words that I'm saying, but you don't really GET. IT. You think I sound like the teacher on Charlie Brown. But if you aren't happy, then what the hell is the point of being healthy????!!!

So, before I alienate everyone, I'll wind this up with a few simple statements.

I am  doing just one more round of chemo currently. We thought I was done but my doctor says "just one more, as always". The indecision feels like its enough to crush me. Maybe yes, maybe no, let's just wait and see...

When all is said and done, I still want to be me.

People often don't know what they are talking about. The more wrong they are, the louder they seem.

Cancer is not for wimps.

At the end of the day, there's no prize for being a workaholic, or the "perfect" wife/mother/family, or having the most stuff. Let it go.

Be happy. And let those around you be happy. Whatever that might look like. 

Eat dessert first.

Say what you think and mean what you say.

Sincerely, best regards, etc.etc.

Sarah Shelton

Homemade Ketchup

Fermented Ketchup
Prep time
Fermented condiments like ketchup provide another way to take in your good bacteria, while at the same time eliminating another High-Fructose Corn Syrup-laden food from your diet.
10 hours
Fermentation time
3-4 days
Yield: 2 pints
10 lbs. fresh Tomatoes
½ cup raw honey
½ cup + ¼ cup liquid whey, divided
2 oz. raw apple cider vinegar
2 teaspoons sea salt
1 teaspoon cloves, ground
2 teaspoons allspice, ground


Make Paste (from scratch)
Wash and remove stems from tomatoes.
Make an “X” shaped slit in the skin of the tomatoes at the stem end.
Boil water in a medium to large stockpot.
A few at a time, drop the tomatoes in for 30-40 seconds. Fish out with a spider or slotted spoon.
Immediately put them in a bowl filled with ice water. Then pinch the tomatoes from the non-slit end. The skins will pop off. Set aside in another bowl. Compost or discard skins.
Cut tomatoes open and squeeze out gel and seeds. (Reserve for another use).
Puree drained tomato flesh in a food processor until mostly smooth (a few lumps is okay).
Pour contents into a slow cooker, and cook for 8-10 hours on low heat, stirring occasionally. During this time, most of the juice should evaporate off, and it will take on a darker color. It won’t be as thick as canned tomato paste. You can cook longer if you want a thicker paste.
Let paste cool.
Mix ingredients
Add paste to a mixing bowl, along with honey. Stir until smooth.
Add vinegar, ½ cup of whey and salt.
Grind cloves and allspice and add to bowl.
Transfer to a quart mason jar or several pint jars (if sharing). Cover with lid (but not ring) and let sit at room temperature for 4 days. After about 3 days, the liquid part of the whey evaporates, leaving the whey powder on top.
Stir contents, then secure lid and put in refrigerator. Lasts 6 months

Sarah, how's your progress? You know with the "cancer Stuff".

Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.

So, here's how I feel today, which is:
12 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).

19 weeks after my last radiation treatment.
And hopefully I've had my  FINAL, round of "treatment". KNOCK. ON. WOOD.

Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.

Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.

Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be compiling things written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. Most of which feels like it has no real focus or reason it just explodes out. Anxiety has plagued my life but kept in check didn't get the better of me, to having full-blown panic attacks. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. I promise.

Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.

Sore: Well, that has to be a given, right? I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But It's still all up to me to do it and  pretty much nothing was going to stop me. Just don't make me laugh.

Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into osteoarthritis and it's not any fun. Chemo-induced arthritis of the bones hits you like a ton of bricks and never lets up. And it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it's not like they're putting anything back. I do have an appointment with the chemo doc after the next "round of oil"  and we will discuss if there is any way to manage these MOST ANNOYING symptoms.

Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and osteoarthritis, so not sure who's at fault here). I would say that it's gotten worse since ending chemo, and 3:00-4:00am is my new wake up, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.

Misc: I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. 

My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is any grey now in it, so possibly one perk?!

Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have another scan and blood work scheduled for April 10th and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...

Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event.  I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!