Side effects may include the following

I’m tired.

This week has been a long one. On Tuesday, I was at the hospital almost the entire day, dealing with various appointments and consultations, and an unfortunate mix-up with my blood. I had to hear more things about my “prognosis being slightly worse” because of my age and “greater chances of it coming back” because of X, Y, and Z, and blah blah blah, and again process the idea of more treatment, which is starting to feel never-ending. It is difficult not to get upset after these types of conversations. My typical routine is to get through it, keep myself composed, ask all the right questions, and then go home and scream and cry and shout “I don’t want to dieeeeeee!” and hyperventilate for a minute or two. Then after exhausting myself, I usually put some crap on the TV like The Bachelor (my saving grace as of late) and distract myself until the next wave of panic hits for one reason or another.

Needless to say, it is exhausting. I keep telling people that I am bored. But it’s not the bored you are thinking of, where I have nothing to do. In fact, I often feel like I have too much to do and not enough time. It is more a case of an overall boredom with cancer. I am bored of dealing with it, talking about it, stressing about it. Bored. I want to be focused on something else. I would rather be complaining about the cold that many people on my Facebook seem to have. I would rather be staring at a wall, watching paint dry, or scratching my fingernails across a chalkboard. Essentially, I would rather be doing almost anything. That is where I’m at.

I have been experiencing some bad pains in my back the past couple days. For the average person, back pain would be of little concern. But anyone who has or had cancer can tell you that any new type of pain can be a cause for alarm. It is nearly impossible not to quickly jump to the conclusion that bad pain means the cancer has spread. I wish my brain did not go there, to such a dark place. I wish I could brush off pain the way other people are lucky enough to be able to do. But I can’t. Will I ever be able to? I’m not sure. But for right now, I am really hoping the pain gets better, because I don’t need a new worry to add to the list. The list is getting awfully long, my friends.

Tomorrow I go for my next chemo, which involves a new regimen. The infusions will take a total of 5 hours. With the typical wait times, I will likely be in the hospital all day. Please feel free to suggest fun things to do while sitting in a chemo chair for 5 hours.

The new chemo involves a drug which is typically known as one of the more horrendous chemo drugs one can receive. Fun possible side effects include neuropathy, debilitating mouth sores, terrible body pains and aches, loss of nails, and extreme fatigue, among others. As my oncologist said, I don’t think you’re going to like it too much. I should mention that over the next few days, or possibly week, I likely won’t be too great at responding to any emails or messages. Know that if I don’t answer you, I am most likely lying under my covers in the dark listening to some sort of “Songs for sad emo wussies” playlist on Songza.

I will also be starting my first round of the drug that will hopefully have a life-saving effect on me. And in addition, I start my clinical trial drug, where I will either be receiving a real drug, or a placebo. I will not know. Please cross your fingers for me that I receive the real deal. My chemo drug also has a tendency to cause severe allergic reactions, which is why I am currently hopped up on steroids and will be for the next couple days. So please cross your fingers as well that I don’t have a severe reaction when they start the drug. In fact, cross your toes too, if you have the ability to do that. Lots of happy thoughts tomorrow, if you can spare some.

On a slightly cheerier note, this week was a really great one in the I’m-a-cancer-patient-so-I-get-lots-of-gifts arena. I received a handmade tshirt from an old schoolmate (and former prom queen, hollaaa!) who now lives in New Zealand. She somehow created a stencil of me wearing a scarf and incorporated a cupcake theme and painted it on, and the whole thing was beyond impressive to me. I wore it to the hospital yesterday, proudly. I also got another package from the The Canary Islands (yes, many of my friends live in weird, exotic locales) which included a super soft sleep mask that I will likely bring with me tomorrow in hopes that it induces a nice chemo coma. And I got some more pretty nail polishes from my new pen pal, who volunteers to send me things through an organization, out of the goodness of her kind heart. On the food side, I have some soup, mashed potatoes, cookies and more goodies waiting for me. You all have no idea how much these things brighten my day. Well, hopefully you do. Because I just told you.

That’s all I wish to share for right now. Think of me tomorrow, with my hands and feet submerged in buckets of ice (something I have to do to try to prevent finger and feet problems). Hopefully that creates an interesting picture for you.

See you on the other side.


30 thoughts on “Side effects may include the following

  1. Hi Steph. I started reading your blog when your sister posted the first one. I met her last winter when she came to Big White and she spoke of you with such admiration, I’m sure she is so proud of you now too.
    I’ve wanted to comment on how amazing I think you are, so inspirational and powerful – even though you might not feel this way sometimes.. Anyway, I wanted to share some things to do whilst waiting through your treatment:

    1) Write a To-Do list of all the amazing things you will do after your treatments are completed

    2) Become an artist – all you need is a pencil, eraser and paper. Let your imagination take over, or take photos of things you like and draw draw draw!

    3) Card Games – A pack of cards is easy to pop in the bottom of your bag. My oldest sister use to have a ‘Card Games Dictionary’ which meant I learnt to play poker at 4! And seriously who doesn’t enjoy a game of ‘Go Fish’ or ‘UNO’? You could even start a leader board 😉

    4) Learn the theory of how to do something new. Some suggestions include:
    How to be Awesome
    How to be Weird
    How to become a Bounty Hunter
    How to do the Rock Bottom
    How to survive a Long Fall (i.e. a fall from an Airplane)
    How to keep your Dog Happy

    I hope at least one of these things can help pass the time.

    Sending lots of love,

  2. Ohhhhh Steph, I wish I could take this all away and I wish I lived closer to you so I could give you a Big hug…your family on the east coast are thinking of you and we r sending nothing but positive, and loving thoughts your way…we are all ROOTING for you, Helene

  3. we’re there with you Steph. Hang in there, keep calm and carry on!!

    Love you,
    Cousins, Michele, Michael, Kate, Maddy and Patrick

  4. you where not born when ira gershwin wrote our love is here to stay for his brother george it is one of are special love songs and we send it to you,love you,uncle jack aunt fran.

  5. For me “Knowing” you sucks. I’m trying to think of a better way to say it but I think you know what I mean. I don’t even know you and I hate hate hate that you are going through this. Your posts make me both cry & laugh. Wishing I could make this go away for you, really does nothing. But I wish it did. I look forward to your posts and twitter updates. The good, the bad and the ugly. I hope that in any way I am able to brighten your day by what I do.(Your welcome for the polish!) Thank you for letting me into your journey.

  6. Steph- I wrote a while back and have loved reading and re-reading your posts! I cried today when I read this one. I know exactly how you feel when you come home and scream and cry. I found ‘crying in the shower’ to be very cathartic. I don’t know you personally but I want you to know that as a ‘fellow cancer fighter’ I think about you all the time and send you positive thoughts. I also went today for my treatment (different than yours) and check up. I told my Oncologist that I have had bronchitis for 3 weeks. He said to me, ” And so now your thinking you have lung cancer, right? Of course you think that, you will always think that way but that’s ok if you are still concerned next week we will run a chest scan if you don’t feel better”. He was right on the money, every ache, shortness of breath or twitch must be cancer spreading. I hate it! I want my carefree life back!! My only advice to you is that I was horrified by the possible side effects that I was told to expect and then I didn’t have most of them so I wasted lot of time worrying about it. Cross each bridge when you come to it. There is no crystal ball to look into and you wouldn’t want one anyway. (Sorry if this sounds preachy, I am still navigating my way too.)
    PS-I wish I had friends in exotic places, everything I’ve gotten is Pink and made in China!

  7. Hi there–sounds like you are having the same chemo that I had–with your hands and toes in ice mittens. I am now two years out….take each day as it comes. Talk to your Doc and get something to help with the aches and pains that may come from this round of chemo. I was “young” when diagnosed also. My oncologist told me to live each day…don’t worry about the next..easy to do but it will come. Good luck.

  8. Hi Stephie.
    We’re hanging off every word and you know you’re never, ever far from our thoughts and hearts. All digits crossed, all positive thought waves headed in your direction…Love you. Lynne & BG

  9. Hi Steph, This is my first reply but I’ve followed since the start and am ‘enjoying’ (truly the wrong word, but I feel you get where this is coming from) your insights into a super-crappy journey that I hope goes quickly, in the right direction, and ends with you as the conquering heroine.
    I wanted to share a tip a good friend who experienced breast cancer as well shared regarding her mouth sores: she swished with club soda often and it really helped sooth the pain for her. As Buckley’s says, “Tastes awful, but it works.” Don’t know if you already heard this one, but thought it might be helpful, though I hope it won’t be necessary.
    Now if only you could find someone to massage your hands and feet while plunged in the ice water.
    Anyway, best wishes for the next week and all the weeks to come. You will get through this.

  10. Hi Steph! We don’t know each other, but my family is sending you all the positive vibes we’ve got! You are beautiful and, more importantly, you are strong — this sucks more than anything, but you got this, girl!

  11. I will cross my fingers, my toes, my arms and my legs. Infact I will turn myself into a twisted pretzel for you and pray for wonderful results and few side effects from this new drug. Keep Blogging!!!

  12. Things you can do while receiving chemo:
    1. Think of amazing poems to recite to me
    2. Try to think of as many words as you can that rhyme with the word ‘Rhyme’.
    3. Do face yoga (yes, t’s a thing)
    4. Think back to Yorkhill days and remember funny things like how much Alex Boni used to spit, how often Alon called us ‘cheaters’ with his accent, and how much Mr. Cooper loved us.

    Gonna think about you alllll day tomorrow, and will send happy, SUPER happy, positive, feel-good vibes your way.

  13. I agree….this sucks. And yet, here you are, sharing yourself so openly with everyone…I know it’s therapeutic to get it all out of your head…sort of like detoxing your brain…sweating those thoughts out….and the humanity that is responding is the better side of our nature…full of compassion and wanting to contribute in some way. Thank you for bringing that out in all of us.
    We need to be reminded how lucky we are and also how great we can be to each other.
    I think you are nothing short of brilliant and amazing….while you may have a different opinion, Dear Girl….take in all the love being poured your way. It only helps the process….never hurts it!
    Blessings galore!

  14. We are friends of Larry and Deborah Brooks. Went to med school with Larry at MCV/VCU School of Medicine. Wishing the sincere best and we love your blog, will follow along and cheer you on!! You go girl!!

  15. Sending tons of good vibes, prayers and anything else I can throw your way. Even though we have never met I have been following your blog for sometime now. I don’t know you. But I am with you.

    PS if it means anything to say it, I’m observant and would really like to add you to my tefilla. If you are ok with that, I just don’t know your Hebrew name, so if you ever feel comfortable to say what it is…otherwise it’s ok, I’m still keeping you in mind. Especially tomorrow.

  16. I would like to acknowledge, that despite your great sense of humor, THIS SUCKS! When I was going through my cancer treatment (which was much milder that what you are going through) I really appreciated it when someone said, “Wow, that sucks” because it does. And sometimes you just want someone to acknowledge the reality of the situation instead of trying to cheer you up. So, say it with me people! THIS SUCKS. It feels good to live in that space for just a little while and then…you move on to doing whatever they tell you to do next and you keep your chin up or you cry or you eat another cupcake, but whatever you do, you don’t do it alone!

  17. I am a cancer survivor, so I know it can be done.

    When you are in the chair tomorrow, build your ideal house or place in your mind.

    You are in my thoughts and prayers.

  18. Hi Steph,
    We don’t know each other, but I’ve been following your blog since your first post, and I just wanted to say that I think you are very brave and inspiring.

    Will absolutely be sending happy thoughts and positive energy tomorrow (and in the coming weeks). Both my fingers and toes will be crossed too. x

  19. Hi Steph,
    We don’t know each other, but I’ve been following your blog since your first post, and I just wanted to say that I think you’re very brave and inspiring.

    Will absolutely be sending happy thoughts and positive energy tomorrow (and in the coming weeks). Both my fingers and toes will be crossed too. x

  20. We don’t know each other but I am sending you lots of strength and positive energy tomorrow (and every day after that). You are a very strong woman and I look forward to reading you blog for years and years to come.

  21. My Sweet Cousin,
    My fingers and toes will be crossed a million times over and over…..for you and I will be thinking of you that I can tell you. Let us all know more updates Steph. Lots of Love and many HUGS!!!

  22. so… When I had acquired the same monkey on my back I used to love to say to people, hey once you have cancer you never get a headache again, it’s always a “brain tumor” – respones: confused silence!… (this is where you are supposed to laugh – in a noir sort of way). The truth is that your humor is your best totem and yes, it would be much better to be talking about anything else but the Big C (which by the way I find to be a very humorous show).
    Now, don’t laugh, but I have one word for you… Needlepoint! I found it soothing, mindless and before I looked up from the messy needlework, hours had gone by. Give it a try, you never know it might be a nice alternative to the Bachelor. Good luck tomorrow, and if you were still in Montreal you could stick your feet in the pile of snow outside your apt on St. Urbain. Lots of gentle hugs and soft prayers!!

  23. Hi Steph!
    I’ve been reading your posts and I’m crossing all possible fingers so the treatment treats you well and you can get better soon. I don’t have your address, send it to me over email and I shall send you something colorful from Brazil.
    Big hugs and kisses
    Patchi (the Roomie that wasn’t 😉

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s