The Other Big C – Chemo

I’ve been cut loose!!

That’s right. I’m rid of the shackles of my hospital bracelet and blogging to you from the comfort of my own bed right now. Four weeks to the day since being admitted to hospital, I am finally home. In the past four weeks I’ve endured:

  • Being told I have a “large mass” in my chest
  • One needle biopsy in the centre of my chest
  • Two bone marrow biopsies – one on each side of my pelvis
  • Six different scans and x-rays
  • Surgery involving putting a scope into my chest from an incision at the base of my throat
  • Surgery to remove a cancerous lymph node in my armpit
  • Hooked up to an IV 24 hours a day, changing IV sites every 4 days
  • At least 2 blood tests a day
  • One cancer diagnosis
  • One chemotherapy treatment

Yup. It’s been a doozy.

I had my first chemotherapy “session” on Monday and I am happy to report that it wasn’t so bad!!

I had worked myself up over how awful chemo was going to be. Thankfully, having expected the worst, I was pleasantly surprised when I realized my first chemo story would not be a horrific one.

Because I received my first treatment as an inpatient, I was able to get the drugs laying in my own hospital bed, which made it a lot more comfortable. The nurses gave me anti-anxiety medication to calm me down which helped A LOT. I didn’t feel too doped up, just very serene about everything that was going on.

Most of my chemo drugs were inserted via “push.” Which means the nurse takes this giant syringe and pushes the drugs into my IV lock very slowly. One of them was a bright koolaid red colour! Another one of the drugs was an IV drip, and then some steroid pills. The whole thing took about two hours from the start of drugs to the finish.

In terms of side effects, I didn’t feel much the first two days. Just weak and woozy. On Wednesday however, I woke up really nauseated and spent the morning in bed. Really intense exhaustion hit later in the day. All I wanted to do was lay in bed and never move again. I haven’t been sick to my stomach, but I have become extremely picky about what I eat. So far, I kind of feel like this is what I’d expect pregnancy to feel like. Except, I’m killing something in my body, not growing it.

I will say, that my “cancer symptoms” are already gone. The week before I started treatment, I noticed a drastic increase in feelings of sickness spurred by the cancer growth – headaches, muscle aches, sweats, etc. I’m not sure if it’s the chemo, or the slew of other drugs I’m taking, but it’s a nice relief.

Now that the first chemo is out of the way, I’m not so scared of the next ones. But I am preparing myself for my body to not respond quite as well in the future. I suspect it will get beat down a little more each time with the appearance of more side effects. I’ll be going in for chemo once every two weeks, so at least I’ll get a little break in between!

On top of the chemo, there is now a slew of drugs I have to take.

The first few days after chemo will be the worst for having to take and schedule drugs. I have to administer TWO needles on myself a day. One is to boost my white blood cell count (my immune system!) and one is a blood thinner so the blood can move through the veins that the cancer in my chest is restricting. It’s really not that bad. I’m more scared that I’m going to run out of places on my body to give myself shots. It’s only been two days and my belly is already getting full of needle bruises.

As I’ve mentioned before, I am not privately insured. So while my hospital stay and procedures are all supposed to be covered by Canadian Medicare, the prescriptions I need are paid for out of pocket. This isn’t usually a big deal, except for when you get something huge like cancer and suddenly need a whack of crazy expensive drugs.

My out-of-pocket drug costs? $5000 for every month that I’m on treatment. I’m hopeful I’ll get some kind of assistance with this, but we’ve been hit with a few roadblocks along the way. Including me breaking down in the hospital yesterday after speaking to someone with Medicare over the phone. Going through cancer is such a scary and awful thing. But when money and bureaucracy are standing in the way of getting healthy, it brings a whole new and intense level of stress to the situation.

It’s with this that I plug The Great Fundraising Act. It’s amazing that SO many people have donated so many items to the fundraiser. But the important part starts on Monday with the bidding! You can see a list of the items here.

And now, if you don’t mind, I have some lost time to make for by cuddling up in my own bed.

Posted on July 21, 2011, in Uncategorized. Bookmark the permalink. 49 Comments.

  1. Christina @ Food.Fitness.Fun.

    I’m glad you’re at home in your own bed! Yay!

    I hope your health/drug coverage gets sorted out quickly, you don’t need more stress. Maybe NB has a program similar to the Ontario drug program? The program covered an uninsured friend of mine who underwent cancer treatment, including over a year of injections, without private drug coverage.

    Keep rocking on, you are amazing!

  2. I can’t wait for the fundraiser. I’m excited to see how much is raised. I know I’ll be bidding on tons of stuff like crazy. You won’t have to worry anymore!!

  3. Happy to hear that you’re back home. It makes a world of difference.

  4. I can only imagine that your own bed, your own shower, your own food and your own everything will help the mental recovery aspect times a million and twelve. Take everything a day at a time and don’t let the stress of the costs affect your recovery. Things have a way of working themselves out and although the situation is less than ideal, it is what it is. You will still get what you need, you will still recover and you are not alone in your fight–financially or emotionally.

    It sucks. Debt sucks. Cancer sucks. But it helps to be home and have support. Win-win. Rock on.

  5. Susan, I’m so happy to hear your first treatment wasn’t as bad as you thought it would be. Sending you prayers that all subsequent treatments will go at least as well if not BETTER! Enjoy your cozy bed as it’s the BEST place to be. Continue to rest and know you are being thought of and prayed for. Blessings to you dear one.

    P.S. I will be bidding on some goodies on Monday for the “Great Fundraising Act”. Looking forward to it.

  6. Hey Susan, So glad you are home and the chemo treatment went well. Good to have the first one, and the fear of the unknown behind you. The gang here is still rooting for you!

  7. SO GLAD you are home!! AND that chemo wasn’t AS bad as you’d anticipated it would be. You are such a trooper!! I can’t wait for the auction on Monday! I’ll be bidding up a storm :-)

  8. I know that you can get some extra coverage through the province (NB)… it can be a little tricky to negotiate the paper work but the people that administrate the program in NB are really very nice to deal. I have to get extra coverage for my MS drugs. I am not sure what the coverage is for cancer drugs… I can understand the frustration with the cost of drugs… we are lucky so much is covered but the added cost really do add up. Hope the needles are going well. I have yet to run out of places… Can you use your thighs?

    • Yes, I can also do my thighs, arms and love handles. But my legs aren’t as “flabby” (ie as easy to grab) as my tummy. First time in my life I’ve ever wished I had a little more fat on my body :P

  9. so happy that you’re at HOME in your own bed!! And i’m happy to hear that the first chemo wasn’t too bad.

    PS: Could you email me your address? I have something to send you :)

  10. Glad to hear that you aren’t feeling as bad as you anticipated. Make sure you contact the Canadian Cancer Society. A close friend of mine (who has been in remission now for over 10 years and was also treated at the Moncton hospital) didn’t have prescription coverage either and received a lot of financial assistance from them. I will be thinking of you often and can’t wait to participate in the GFA!

  11. Wow. You went through your first chemo treatment with flying colors. I love how you describe that you feel better now that the cancer has (hopefully) stopped growing…how interesting that you can feel a difference already. I am so glad you get to go home and I LOVED looking at that list of items! I am having my sister bid on stuff for me since I will be away without internet access. Hopefully someone picks up the item I added to the list too :) Enjoy your weekend!!

  12. oh babycakes! $5000 a month is insane! and you know me, as someone who works in government, that our system is far from perfect and really, the whole process for people like you is absolutely ridiculous. if you lived in wisconsin, i would try and help you!!!

    but we got this great fundraising act down baby – so excited for monday!!

    • Everyone is assuring me that the financial situation will get sorted out. It’s just that in my current state I reeeeally can’t deal with paperwork or talking to people on the phone. There should be an easier way for sick people, and especially the family members of sick people, to sort all this stuff out!

      • I totally agree…as much as the Canadian health system is good in so many ways, it still sucks! When you are already going through so much, you should not have to deal with the finance part of it…
        Glad you are home and feeling decent though, that’s a plus!
        I just checked out the fundraiser items and WOW!! So excited to bid on many, many items!!
        Your medical bills won’t know what hit them!

      • Susan, is there a social worker in the oncology department at the Moncton Hospital? We have one here. One of the first questions she asked me is if I had coverage. She was there to help people parcel through things like that to reduce their stress and help them focus on getting well. She helped me fill out my disability forms from work and get the necessary signatures; as well as get my hospital parking pass.

        • I’m a first time commenter, I just found your site, sorry to butt into this thread but yes for the social worker! There should be something or someone at the hospital that can advise you and help you wade through. Lots of others are in this situation. One of my best friend’s, her mom had breast cancer and no private insurance and she was helped by a charitable organization to help pay the $2000 per week cost. This is in Ontario though. The Canadian Cancer society may be able to help. It’s terrible having to deal with all this type of bureaucratic BS when you are sick. Be strong and you will beat this for sure!

  13. Susan,
    I’m SO happy to hear that you are home, that have one treatment down and out of the way (and that it wasn’t as horrible as you expected). I’ve been reading your blog for well over a year now and keep you in my thoughts.

    I’ll be bidding on some items on Monday for sure. I live in the US and my husband was an unisured type 1 diabetic (who had to be hospitalized often). I know how horrible it can be to try and be healthy while not stressing out over money.

    Keep pushing on girl, you have an entire community behind you that loves you!


  14. $5000 for a month? Holy balls! (Holy balls is the cleanest way I can put it…want to say worse…) That is INSANE! Nothing is worse than worrying about finances when you are trying to just heal and feel like yourself. And that much…oh god.

    We will do awesome with #TGFA, Susan! I have told my friends, family, blog readers and husband about it (more than once) and everyone is planning to bid. I can’t believe some of the awesome stuff people have donated. We love you!

  15. Yea! Your home! Oh my gosh, I just looked at all the items up for bit, that’s incredible. You have an amazing amount of support. There is so much, I wish I had tons of cash!

  16. Oh YAY! I’m so glad you are back in your own bed. That somehow makes life seem a bit better, I love my bed :D

    I’m glad the first round didn’t wallop you too bad! I pray it is an “easier” experience for you than I know it can be for some. XOXO

  17. I’m glad to hear that your first treatment went so well. I hope it really keeps up and keeps going well for you.
    $5000 is a LOT. Chemo drugs are so insanely expensive. Crazy mom has a PICC line and I change the bandage on it and keep it clean along with giving her the blood thiner and can you believe that the insurance company charges her when I do all the work at home for the supplies but when she has it changed at the hospital the insurance company picks it up and the cost is triple what it costs for me to do it at home!
    I’m really looking forward to the Great Fundraising Act on Monday. I can’t wait to bid!

  18. So many people are behind you. There is NO WAY we will let you go through the financial struggles alone.

  19. Must be really, really nice to be home! I love that you wrote out a schedule for yourself with the pills. In one of the research studies I worked on, we were testing people’s cognitive functioning by giving them 3 separate drugs with instructions regarding usage, and making them come up with a schedule verbally, without being able to write anything down. I was always thinking “I would FAIL this SO BADLY” hahaha! I can barely get my vitamins in my body after eating! Good luck with it! :)

  20. I’m so glad to hear you’re back home and doing better than you expected. Have you ever heard of Kris Carr? She authors Crazy Sexy Life – I got both of her books after my diagnosis. Super helpful in terms of the resources section (and the entire book) but there are lot of resources listed for people who need insurance/money/assistance. I’m blanking on the names of the websites, but there are even sites you can put up for family/friends who are asking what they can do to help and people can check off cook, clean, give you rides, donate money, etc. I’m going to try to find it.

    I am definitely bidding on all the great treats lined up! :)

  21. Susan- I hope we raise a lot of money to help defray the medicine costs. Right now, you are listening to your body and helping it heal and shouldn’t have to worry about the financial part (though I know that’s not the case). Sending a hug from San Francisco.

  22. That’s a shitton of money. And I agree, it’s incredibly hard to be on the phone, fighting these battles in your state or any state! I suppose that the one way to look at it (scream at me if this is annoying…) is that money is replaceable. (even if it means taking out credit or whatever)…your well-being/health is irreplaceable, so that will obviously be the priority. It breaks my heart to hear that people are paying off debt for sicknesses in the past- even commenters who’ve said that they are still paying off medical bills for parents who have passed away. It sucks. But we just want to get you back on your feet.

  23. You are so amazingly eloquent, strong willed – and quite frankly – KICK ASS! :) You whole attitude about your situation is inspirational, and I’m honored to be a part of the TGFA! ((HUGS)) enjoy that home time! :)

  24. SO glad you are home in your own bed!!!

    And I am also SO very honored to be participating in the Great Fundrasier Act!! Eventhough I have never met you, I think its AMAZING to see the power that so many food bloggers (and people in general)are able to bring to the table when a person is in need!

    Good luck this week and can;t wait to bid on Monday!!

  25. Hi!! I love your blog. Being a two month hodgkins “survivor” myself, I know a lot of what you’re going through. I did my own blog too…it was a great outlet and an awesome way to not have the same conversation with several different people on a bad day. It’s not the.easiest journey but your support system will make sure it is :) keep your chin up :)

  26. Yay for the chemo treatment going ok! I’m so excited for the GFA :) I can’t believe how many donations there are! I bet it’s going to be a HUGE success!

  27. I just recently found your blog, and I love it. You are such a strong, amazing woman! :)
    Glad that you’re at home, and that your treatment went well.

  28. I’m so glad to hear that the first treatment didn’t knock you out too badly and that your symptoms are better now. Enjoy being home! :)

  29. So glad to here you’re at least in the comfort of your own home! Your positive attitude is truly inspiring. I hope you continue to feel better!

  30. Glad you get to be at home!

  31. I’m so so so glad you’re back home and I hope the finance stuff sorts itself out soon. I have faith that all will work out for the best. Hope the rest of the chemo treatments go as well as the first did. Thinking of you!

  32. So glad you are home pretty girl :) You have such an amazing attitude!! You are in each and every one of my prayers!!

  33. Susan, I just stumbled upon your blog from a post on Lynn’s “The Actor’s Diet” blog – can I just say how inspired I am of your courage in facing this disease. It is so amazing to hear about strong, brave women who quietly go about dealing with whatever life throws at them, and I’m so glad I was fortunate enough to be able to read your story. Sending all my love and best wishes, keep fighting on and inspiring a world of women to do the same :)

  34. Im so glad it went well-or as well as it could have been!
    Get plenty of rest hun :)

  35. Whew this all sounds so familiar! I am 24 and was diagnosed with non-hodgkin’s lymphoma in February 2011. After reading through all that you’ve been through (the tests, the scans, the chemo) it brings back memories of just a few months ago. Soon enough, these will be memories for you as well! It all seems so overwhelming and crazy but you will get through it :) I will be keeping you in my thoughts and prayers. If you ever want to read about my cancer journey you can read it on my blog.

  36. Enjoy your bed, I hope you have a restful sleep tonight.

  37. You have to give yourself shots…that sounds difficult. I have no problems giving other people shots, but myself, I’m not so sure. Glad that chemo wasn’t too bad!

  38. So glad to hear you are home and chemo went OK. You are in all of our thoughts!

  39. I’m so glad you’re home. It is so admirable you’re still keeping your optimism and sharp writing throughout all of this. Good luck with everything.

  40. greensandjeans

    Yay yay yay for being in your own bed AND for your first day of chemo going better than you expected! Also, I seriously hope you’ve been catching up on the tour (yesterday’s stage was BANANAS).

  41. I’m so glad to hear you’re home! I just recently found your blog and I can already tell you are are a courageous woman. Keep your chin up! You have a lot of people who care about you :)

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