Hi friends! Thank you for being so gracious and supportive as I took a few days off from blogging. Most days I’m really happy to have blogging as a hobby and a way to keep me busy and sharp while on sick leave. However, on days when I actually do feel really, really sick, it’s hard to find the energy to post. As chemo drags on and I feel progressively worse, don’t be surprised if I take more days off here and there.

Even though I still feel shitty today, I wanted to give an update as to what is going on with me and this cancer thing. Last you heard, my temperature was a little high on Monday and I was experiencing a dry cough. Well, as the day went on, I started to get short of breath. Thankfully, I was scheduled to see my oncologist anyway on Tuesday, and he got right on it.

After a chest x-ray, pulmonary function test, and a detailed CT scan of my lungs, my oncologist was able to find that I’m experiencing decreased lung function and inflammation on my lungs. In other words, I’m positive for drug induced lung toxicity. It’s no joke.

One of my chemo drugs, Bleomycin, which is the “B” in my ABVD Hodgkins cocktail, is known for basically poisoning the lungs. It can cause inflammation and scarring on the lungs that reduces the amount of air I take in and oxygen I absorb. It happens to about 18% of people taking my chemo cocktail, and can be fatal if not addressed right away.

Thankfully my oncologist says it looks like we caught it early. The damage can be permanent, but he has high hopes mine will be reversible. I’m starting on Prednisone (steroids) right away to help reduce the inflammation and the coughing. I didn’t end up getting chemo this week, but will likely not be taking the Bleomycin with my chemo next week. From what I’ve read, Bleomycin is the most effective in the first three months of treatment anyways, so hopefully taking me off of it won’t affect how successful the chemo is at killing the cancer. I’ll also be seeing a respiratory therapist once a week.

I am pretty bummed about this new development. For one, I can’t get off the couch without gasping for air. I wake up in the middle of the night with coughing fits that just won’t end. Even though it’s been two weeks since my last chemo, I’m still exhausted because my body isn’t taking in enough oxygen. Don’t get me started on having to take Prednisone. I’m guaranteed a 20 lb weight gain as a side effect of that one. My moods will change, and it will put my bones at risk of breaking.

I’m at least secretly happy that I have this extra week of being chemo-free to allow my body to recover more before I tackle my next six treatments. I thought hitting the halfway mark would be a great milestone, but it’s definitely more of a reminder of just how long and gruelling this experience is. I knew I would hit bumps along the way, but that still doesn’t make the bumps any easier. I just have to buckle down, sharpen my focus, and know that there is a light at the end of this tunnel.

Posted on October 13, 2011, in Cancer and tagged , , , . Bookmark the permalink. 85 Comments.

  1. Susan I am soooo sorry to hear about this setback, and that you have to start prednisone, and that you have this cough…and that you have any of this. Prayers & love to you…xoxo

  2. So sorry that you are having more difficulties, Susan. Your great attitude shines through though – lay in bed and rest!

  3. Stay strong Susan!
    Take as much time as you need. This is your blog after all :)
    I had to look up a few words from this post! The effort you put into to understanding what you are going through is amazing, thank you for sharing it with us.
    I hope you feel better in any way you can soon :)

  4. SO glad they caught it early and YAY, glad to hear that it can/may be reversed! I remember feeling bummed about that too, and I asked the oncology pharmacist if they could still give me “one more” dose and she started to cry when she had to say no. God love the health care workers in oncology… they really do care and they have such a tough job…

    Hugs to you. Enjoy your “week off”. ;o)

    • Yes, I’m reeeeally lucky that I started to get symptoms before the damage was too great, and even more lucky that my oncologist took it seriously and got me all the tests I needed within a day. And agreed – the folks who work in oncology are amazing.

      • Oncology must be such a tough place to work. I don’t think I could do it. I don’t think the “good news” cases could possibly outweigh the bad ones when I went home at night. I’m in awe of people who can be a part of such a tough specialty.

        • I saw a huge difference when I stayed on the general surgery recovery floor in the hospital compared to the oncology floor. Not to minimize what people going through regular surgery deal with, but as one oncology nurse pointed out to me, every patient on her floor was fighting for their life. Definitely a tough thing to see every day!

  5. We are thinking of you Susan and praying for you.

  6. oh my Susan. That is scary, but you know what, we are here praying for you! I hope you know that! Please feel free to vent frustration or emotion anytime! You are one freakin strong woman.
    thank you for updating.

  7. BooHoo, I hate to hear you’re having a ‘bump’ in your recovery. I’m glad it was caught early and that there is the good potential of recovery. Sounds like you have a great oncologist.

  8. Hey, What a shitty circumstance. If you need anymore deliveries outside of Buster treats let me know and I can do a market run. This things doesn’t affect your taste buds does it? Just think of it as one more thing you’ll kick in the ass when you beat this!

  9. When it rains, it pours, and in this case it’s a shit storm. However, let’s stay positive and say that it’s a godsend that you caught things in time and can get on with flushing that crap out and moving on. It’s a bump, not a sticking point, and things will only improve from here.

    On an unrelated note, I had a dream that we hung out and you were totally fun. Considering I don’t have that many girlfriends, it made me want to come up to Canada and annoy you in person. Count your blessings that I’m here instead ;)

    Hang in there. Hang onto Buster. This too shall pass.

  10. so happy you were able to get it taken care of early!!! sorry this happened to you after everything you have gone through. but your spirit is so strong!! thinking and praying for you always

    I talked with my best friend the other day, he got some moles removed, and they came back positive. doctors says they caught it early, but he has to go back for more test. cancer is no fun!

  11. Oh, goodness… I wish I could help, Susan. Huge kudos to you for taking all the time-outs you need.

  12. Praying for you, Susan, and really glad it was caught early and it may be reversible. You are so strong, I know you can do this, but I also can imagine you feel pretty shitty about it too. Take care.

  13. Bless your heart! There is absolutely a light at the end of the tunnel – just keep moving toward it one day, or even one hour at a time. One of my friends suggested to me when I started chemo that I not think about how much more there is to go. She said just to focus on each day and getting through it. Then start over again the next day.

    I’m so glad that your doctor found the cause and is taking care of it right away. I hope that the icky steroids will do their part quickly and give you some relief from the shortness of breath and coughing so that you can get decent rest before your next treatment.

    Saying a prayer for you today.

  14. Many people are thinking of you Susan through your tough journey and
    just wish we could make you feel better NOW.
    Hope your lungs feel stronger soon as we are all sorry to hear
    of you feeling so cruddy.

    (I take steroids for asthma and am always concerned re weight/puffiness and
    the damage to my bones-darn side effects!!)

    Rest up and contunue to take loving care of yourself .

  15. Keep you head up and hang in there. You are surrounded by amazing family and friends and great doctors that will do everything in their power to help you through this :)

    I have faith!

  16. Just want to send my love and virtual hugs. Stay strong, Susan.

  17. I hear ya on the Prednisone crap. But it will be ok! I was on that for two months for my Crohn’s disease. My advice….eat as many vegetables as possible. You will eat 24/7 so it might as well be the good stuff! That will help with any calcium issues :-) I wish you the best and will continue to pray for you! -Kelsey

    • Good advice! Thank you!

      • Also re: Prednisone. I took prednisone in high doses for about 20 years (from age 3-23) and I have had NO bone density issues luckily. The steroid puffiness is pretty bad, but it too goes away. The acne is also annoying but can be dealt with. I have almost 0 long term side effects from it (I also never gained more than about 10 lbs with it). Seriously compared to the other drugs you are on it will probably be mild. Good luck Susan. I admire you so much!

        • Also on the Prednisone topic, my dad was (over)prescribed massive amounts of Prednisone after he had a stroke + grand mal seizure and had emergency brain surgery to remove a mass (not cancer). It took him a long period of time of gradually reducing the steroids before he was finally off of them, but he also didn’t have any bone density issues and he didn’t gain any weight.

        • Oh and the Prednisone actually cleared up his asthma for several years after being off of steroids, so that’s a plus!

  18. My prayers are with you Susan! I wish I lived anywhere near you, so I could bring you soup, keep you company, something!!! Get some rest!!!! xoxo

  19. I’m so sorry about this bump in the road! I am, however, glad that it got addressed early on and that you are young, so that gives you a better chance of avoiding permanent damage to your lungs (however small a consolation that is at this moment). Know that all your fan club members are pulling for you and sending you good thoughts for strength to make it through all the pesky wickets you encounter on your road to recovery! Bunches and bunches of hugs!!

  20. Sending you positive vibes every day!
    May be you want to have a look at this blog:
    and this blogentry:
    You are not alone – even you have to go through tough times now, there will be better times soon.
    greetings from Germany

  21. Aww sister, I hope that your lungs get better soon and you can start breathing easily.

  22. Big hugs to you. I trust Buster is taking good care of you. :)

  23. Hi Susan: please do not get discouraged, remember you are one step ahead of me in this bad time in our lives and if that brings you comfort I’m glad. You sure encourage me to keep going on this 6 month journey being at 3 months seems like forever to me also but let’s encourage each other …I will send u a email soon with a cute dog story for you to read …no need to email back.
    Take care MJ

  24. There is no substitute for dog therapy! Glad it’s part of your regime.

    The good side of steroids (I’ve also taken them for asthma many times) is the boost of energy they bring in the beginning. Energy and even a sense of well being always come to me when I have to take them, which helps me deal with the more worrisome effects THAT MAY NOT HAPPEN. At 58, I have no osteoporosis, and I’ve had exposure to them over the years. The weight gain isn’t even inevitable – and if you put on a few, they’ll come off pretty fast. HUGS!

  25. Hate hearing any bad news! Ugh!
    This cancer is going to be GONE by next Spring, so you can come play with us in Denver!

  26. I hate to hear of your lung woes. Thank God they found it early! I know steroids suck, but they really do bring inflammation down quick! Hopefully you won’t have to stay on them long and any damage will be reversed. I’m keeping you in my prayers!

  27. I am so sorry for the extra complications! Very grateful that they found it early, though.

  28. sending lots of love, healing and happy vibes your way! <3

  29. I’m really glad they caught it early. I am saying a prayer for you!

  30. So sorry to hear about your lungs, Susan. When will this sickness give you a f*&^*&ing break?!?!?! Keep strong, you’re in my thoughts always, Suzie Q.

    • First thing I said to my mom yesterday after we found out was “Why did I quit smoking again?” Glad I quit to be healthy only to have my lungs damaged by something completely different. Ugh ugh.

  31. There IS light at the end of the tunnel

  32. One day at a time. You have amazing strength…more than you know. You will emerge from this transformed. Take care.

  33. I read your blog every day, and even if I don’t comment often, know that so many people are thinking about you and sending you good vibes. I know that you can push through, and I am thinking about you all the time! This too shall pass.

  34. This just plain sucks, Susan. Thank God you found out about it early and are able to treat it, though! It will all pass, and you’ll be one heck of a lot stronger [than you already are!!] for it. Praying for you, girl.

  35. You are in my thoughts often! You are handling this situation with such amazing wisdom and grace for a young woman… Wishing you all the best and hoping that things are on the up and up very, very soon.

  36. I’m so sorry to hear of your set back. One thing I know for sure as a fellow owner of a King Charles is that Buster is more than happy to stay cuddled up next to you while you recover. I know that the weight gain feels like a negative but think of it as another f-you to cancer. You will win this fight. Thoughts and prays to you.

  37. That is so awful, Susan. :( Man you can’t catch a break! I’m glad your doctor caught it right away!

  38. Your post title made me think of something good (, but then I was bummed to read the rest. Maybe listening to some Flo will help heal those lungs. (She has a new album coming out soon, too!)

  39. I’m happy to hear that they caught it early, AND that it’s reversible! Just think of the weight gain as an easier battle than the one with cancer, right? Keep on being strong and positive! :-)

  40. Praying for you, Susan. I hope your lung damage is reversed and you gain some energy back this week. Take care.

  41. I’m sorry you hit this set-back, but you are stronger than your body right now and this will just be another speedbump and I know you’ll come back even stronger from it! Thinking of you and sending prayers your way. :)

  42. Oh Susan. Much love to you. I’ve had to take Prednisone before and it’s no fun :( I’ll be thinking of you. For me, there was no weight gain and actually serious weight loss but I think that’s more to do with the disease the steroids were battling than the steroids themselves. Either way, your strength of character will pull you through – you’re awesome.

  43. Sending lots of hugs in your direction. Not being able to breathe is not fun. I use steroids as part of asthma maintenance and as much as they help, they also aren’t much fun – except for the LOADS of energy. I hope your lungs heal quickly!

  44. Your determination and positive attitude are absolutely awe-inspiring!! My thoughts and prayers are with you Susan!!!

  45. You have a great attitude Susan! Hang in there! You are doing so great and I really admire you!

  46. Hi Susan, I have been reading for awhile now, but decided to finally leave a comment to let you know I’m rooting for you and that I hope little Buster is taking good care of you. I’m sorry that you’ve hit a bump- but hopefully you have a good snuggle buddy while you rest!

  47. That stinks! I’m so glad they caught it early. Hope you get to feeling better very soon! XOXO

  48. Hugs to you Susan. And don’t ever apologize for not blogging. We all know you have an awful lot on your plate now and just you keeping us informed at all is really generous of your time and energy.

  49. I’m so sorry the drugs affected your lungs. Glad your doctor figured out what was going on right away. I don’t comment often, but I have been following along since you have been diagnosed and you are in my thoughts and prayers every day. Sending you a big hug.

  50. Oh Susan, I am so very sorry that you have to go through yet another trial on top of everything you have already been through. I was so sad when I first read your post this morning but now I am getting MAD!!! You don’t deserve this so go on the attack. You are tough, you already told the cancer that you have had enough so let this lung toxicity thing know that you won’t tolerate its presence either! I know as the chemo continues your body will likely become weaker but cancer/chemo/lung toxicity cannot touch your fighting spirit. I am keeping you in my daily prayers.

  51. Oh man, I’m so sorry to hear it – but thank God they caught it early is all I can say. Hang in there…and don’t ever feel like you need to apologize for lack of blogging, we’re supporting you no matter if you blog or not!

  52. Hugs lovely lady, thinking of you x x x

  53. Praying for you Susan. Hope you are over this “bump” soon. Glad you caught it early.

  54. Oh no. I’m so, so sorry. My thoughts are with you!

  55. wow, i admire your optimism and determination in this post. you’re truly incredible, and i’m praying for you always!

  56. I’m sorry things are so difficult right now. My thoughts are with you!

  57. Love from the all the way down under (I mean Australia, no dirty connotations intended) Stay as positive as you can and know that you are loved by many no matter what

  58. Sorry to hear about that, keeping you in my thoughts! Glad you caught it early so your cocktail can be adjusted and you can keep kicking some cancer butt!

  59. Honestly, I have no words – HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  60. I can only imagine how frustrating and difficult it must be to keep getting bad news. still, whenever i read your posts, i am always beyond impressed and inspired. no matter how it might seem, you ARE succeeding each and every day and your determination is honestly inspiring.

    btw, your puppy is just about the cutest guy ever!! i’m so glad you have such a sweet thing in your life.

  61. Oh nO! I saw that you were on pred. on instagram but I didn’t think it was any other than routine. (dad used to get them routinely for certain treatments).

    I hope that you are doing better now that some time has passed. Where’s my phone- I’m gonna text you :-)

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