What’s it like to have chemotherapy?

I think the most everpresent questions in my mind, even since before my official diagnosis, have been about the chemotherapy experience itself.  I wanted to know so much:

  • Does it hurt?
  • Will it hurt afterward?
  • Will I be vomiting and dragging for days, like in that movie with Julia Roberts?  (whose name I refuse to say, because the memories of it have clearly shaped my unsavory images of chemotherapy to date; do NOT mention it here, ever, puh-lease)
  • How fast will I lose my hair? 
  • What should I be doing/eating/drinking/thinking to support the chemo drugs in doing their job while maintaining my own body stores to help me get through this?

I wasn’t worried about the fatigue or bed rest.  Hey, I can *do* bed rest I wasn’t even worried about the hair loss, just curious about when and how.  So here’s my take on what it’s like to walk into that chemo unit and sit down for treatment.  I imagine everyone’s experience is different.  I know Fenicle has a different and darker view of this, for instance, and she’s well-justified in having it.  But I didn’t.  I had a very good experience my first time in, and I intend to keep at it.

First, I should talk about the Young Survivors group.  Now, this isn’t affiliated with the national organization, but it is a local group at the hospital where I’m getting treatment.  Ten or so of us in our 20’s and 30’s showed up after work/treatment/resting/playing with the kids and nibbled on cheese and crackers while sharing our experience.  Two of us were newbies and the rest in various stages of survival.  (BTW, I’ve been informed that you’re a breast cancer survivor if you’ve survived past noon on the day of diagnosis.  Whoo-hoo!  I’m a survivor!)  It was really nice to meet women in various stages of treatment, and I felt really good about it afterwards.  But also more scared.  Probably because I had more knowledge of what could happen.  And since everyone’s body reacts differently to chemo, everyone will have a different set of reactions and experiences and levels of nausea, vomiting, fatigue, etc.  So, in the aggregate, the possiblities were rather scary.  But once I sat down and parsed them back to individuals, it seemed more manageable.

Plus, they wore great hats.  Or scarves.  Or weaves.  And one woman in her 20’s had the most beautiful bald head that went perfectly with her business suit and engagement ring.  Awesome.

So, I walked into the infusion unit at 8:30 a.m. on Thursday.  I totally felt like the new girl in school, arriving a week late and not too sure if I was wearing the right shoes or trendy jeans, and overdressed in the worst way (surely everyone can tell I’m new) because I still had my hair.  Part of it, at least.  But even my close-cropped “do” would make a chemo cap stick out funny in all the wrong places.  I hesitantly walked up to the desk, introduced myself, and began to sign in.  The nurse smiled gently at me, took away the clipboard for an entirely different kind of injection, and helped me fill out the proper paperwork.  We (WhyDaddy, who I’d like to rename here and now WonderDaddy for being with me through all this, keeping track of my myriad new meds, keeping me sane throughout the bad news and giggling through the good — and keeping me upright through the testing) took the paper-stuffed clipboard through the Hall of Quilt Squares Made By Cancer Patients into the waiting room which shall now be known as The Land of Jigsaw Puzzles. 

In a few minutes, Nurse Nora (or is that the name of the nurse/walrus from the Richard Scarrey Stories? I forget) came to fetch us and show us around the place.  We’d taken a quick stop up there last week, so we weren’t too stunned by its appearance, but it turns out that there was one crucial difference today.  While the nurses’ station, pharmacy, bed infusion unit, and various support rooms where all just where they had been last week, the chemo room itself was different.

Where last week I had been encouraged by the fact that the patients each got their own little curtained area, on Thursday, at 8:30 a.m., the curtains were all open. 

We would all be in one big room.

Hesitantly, so hesitantly, I stepped in, not wanting to really get my feet wet or feel the chill that I was sure would come.  But the nurse was so nice, and so patient, and another woman getting treatment smiled at me.  As the right side of the unit fills up first (better views out the windows, I think), we headed over to the left and chose a spot in the corner.  I did NOT draw the curtains (thanks for the tip, Kimberly!), and we began to wait.

Despite the warnings that we’d have to wait hours for treatment, things moved along really quickly.  Of course, I’d had my labs done last week, and didn’t need to wait for a doctor’s report, but they are also really efficient.  A new nurse, who I’ll call my Angel Nurse, came over and was lighthearted and encouraging as she started my IV, chatted lightly, and coo’ed over the pictures of my babies that I had brought and set up along the windowsill.  (She also laughed at the Milk Duds and treats that I’d brought for WonderDaddy; but she was pleased that he was there.  Support makes all the difference.)  Over the next few hours, she changed my drips (first 2 bolluses of saline, then the antinausea meds, then the first chemo drug, and finally the second chemo drug, which has to be “pushed” into my vein with a lot of drawbacks — a very not pleasant procedure, if you ask me, but at least it was over relatively quickly), did a lot of “patient education” about side effects and “when to call the doctor,” and laughed with us.  She got quite a chuckle out of WonderDaddy’s wry sense of humor and my good spirits, and I think it helped.  I know it helped me.

We also had a revolving door of visitors!  During the 3 hours we were there, we were visited by the hospital chaplain, cancer social services director, my oncologist’s representative, and the oncology infusion nurse that I’d met at the Young Survivors’ Group (who works on a different floor).  All were bright and cheery.  Well, the chaplain was a little taken aback at our cheeriness at first, I think, but I think she was more understanding near the end, after we talked about all the support that we have.  I don’t think she would have understood this blog-thing, but I know she understood that we’re (generally) church-going folk, who have church families praying for us.  And that is the most wonderful thing.  Being a hospital chaplain must be a terribly hard profession.  I can’t even imagine how hard it must be to hold people’s hands and pray with them and try to be encouraging, hour after hour, day after day, for people who you may never see again. 

But back to the day itself.  When we finished, I still felt pretty good.  We split pretty quickly, stopping in the cafe for a teeny tiny sandwich while I still felt like eating.  That was an incredibly good idea, it turns out, since I still haven’t eaten anything besides peanut butter crackers and apple slices.  I felt good on the way home, hugged the babies, chatted with my parents for a while, and then went to bed.  Then I started to feel pretty woozy.  But eventually I was able to sleep. 

And the answers to the questions?

  • Does it hurt?  Nope.  Actually, the first antinausea drug made the injection site burn, but Angel Nurse hung it in a drip instead and it didn’t hurt after that.  One of the chemo drugs tickled my shoulder.  No hurt.
  • Will it hurt afterward?  Nope.  Except for a splitting headache.  Maybe a side effect.  Controllable.
  • Will I be vomiting and dragging for days, like in that movie with Julia Roberts?  No on the vomiting.  Maybe yes on the dragging.  But I’m upright and blogging again today, so that’s a good sign.  We’re hoping to go to playdate on Tuesday, so that will be the real test!
  • How fast will I lose my hair? Stay tuned!
  • What should I be doing/eating/drinking/thinking to support the chemo drugs in doing their job while maintaining my own body stores to help me get through this?  Still working on this one.  I have a fabulous book that NYfriend sent me that I’ve been working through and will talk with my nutritionist on Monday about appropriate supplements and natural helps.  Eating so far has been hit-or-miss.  I just can’t stomach most food, regardless of how good it would be for me.  A lot like the first trimester of pregnancy, actually.  And the tiredness as well. 

Thinking, though?  Thinking is easy.  We’re thinking positively.  And with your help, we will continue to do just that.

54 Responses to What’s it like to have chemotherapy?

  1. Amanda says:

    You took us there spiritually, and now you’ve led us there through your words. I continue to stand in awe of the way you are approaching this chapter. I like knowing where you are as I think of you and send you support. Strength, humor and burdgeoning appetite to you.

  2. bon says:

    thanks, Whymommy, for continuing to paint pictures for us of how this journey works, of what your experience really is…in keeping this metaphorical curtain open, you let us feel like we really are able to be there along with you, and thus like our support and love and good thoughts are something tangible, rather than something bouncing off an invisible wall made by experience beyond most of our imaginations. thank you for letting us in, and for letting us keep the positivity flowing.

    and WonderDaddy? great name.

  3. Stimey says:

    This was an amazing and informative post. If the next woman reads this before chemo, I think it will help her. And I love reading about the rockin’ team that you and WonderDaddy make. The two of you are so lucky to have each other!

  4. That was very interesting. Those of us who have not experienced cancer really view the whole testing/chemo/radiation process as a mystery. A scary unknown. I think it is really good to get the truth out there to help others eliminate their fear of the unknown.

    Thanks for stopping by my blog yesterday. Your comment was very sweet!

    A while ago I passed along a “Rocking Girl Blogger” award to you (only if you want to accept it of course!) because you rock! You probably haven’t noticed, but if you want you can see the post here.

    Rest up and enjoy your playdate!

  5. whymommy says:

    We are so lucky. We are.

    My father talks about a lot about Providence these days — about how, if this had to happen — everything was set up just so for it to happen in the best possible way. Good friends close by, retired parents (and soon to be retired parents-in-law), healthy children, and this amazing technology called blogging that is bringing people I have known and people I never would have known into my life. I am seeing his point.

    Although we would all prefer for this never to have happened, if it had to … I am blessed daily with the support and the resources and the science and the love that I will need to make it through.

  6. whymommy says:

    Thanks, Mom Unplugged! I am honored — and of course I choose to accept it! Sorry that I missed it — what a goof!

  7. christine says:

    thanks for this detailed story. i find myself very curious about it all, but fearful of asking about it. I was lucky enough with my melanoma to not have to do chemo, just surgery, for which i am grateful. Now go have fun on that play date!

  8. So glad you’re on the way to healing. A milestone!

    In reading this I just began to realize how important your writing has become – not only for your own outlet, but for this whole community of people who need to be aware, and to help bust the cancer monster, demystify it, help make legions of people who love you stronger and more proactive and educated and more kick-assing in their own lives as a result.

    Thank you.

  9. ohamanda says:

    Great post! I loved hearing the details–especially about your young survivors group. I’m always praying!

  10. ~JJ! says:

    That is great to hear…I’m so happy you are doing well.

    Keep it up sistah!

  11. coolbeans says:

    Thank you for sharing this. I had questions the other day but wasn’t ready to ask. Now I don’t have to.

    Your survivor story is a powerful resource. You are a blessing.

  12. Robin says:

    My neighbor, in her second year of survival now, said that the thing that helped her the most was always having a support person with her when she went for chemo.

    PS I just awarded you a double-whammy. There’s no one who deserves it more.

    http://aroundtheisland.blogspot.com/2007/07/its-bird-its-plane-its-blimp-no-its.html

  13. whymommy says:

    Ask. Ask. Ask. If I can do anything here to help demystify this beast and keep the curtain open (as the lovely bon puts it), I will. I don’t know what’s in my future with this fight, or how long I have, but something good must come of all of this. It must.

    And knowledge … is power.

    (Robin, I’m blushing. Too sweet of you, just too sweet. Thank you.)

  14. Colleen says:

    Thank you so much for your posts. I am sure you are helping so many people have a better understanding of what it is like to go through what you’re going through. I know I’m learning a lot. So glad your first treatment went so well. Praying that it will continue so wonderfully!

  15. Jacquie says:

    You are amazing! Kudos to WonderDaddy.

  16. Heh. Yesterday I passed on a Rockin’ Blogger award to you. So you can be a Rockin’ Girl Blogger and a Rockin’ Blogger at the same time.

    I think that’s quite fitting.

  17. You’re amazing. I’m so glad you’re sharing this! After going through chemo etc with my friend’s mom, my friend and then my dad, I can tell you that everyone’s different on all of those counts. Some never lose hair, some never get sick, some have diarrhea, some get constipated (TMI?), some can’t eat tomatoes b/c of the acid, some have no food issues, some lose their appetite, some are always hungry…know what I mean? So don’t expect anything until it actually happens! 😉

  18. diatribal says:

    Thanks so much for that thoroughly interesting post. I too, am mystified by the entire process. Thank you so much for sharing your experiences. I am POSITIVE that this will help the next young (or old) woman that has to go through the same thing.

    Keep up the good work!!

  19. skabeagle says:

    I felt like I was right there with you. Will be praying for you as you go through this and encourage other women with your words.

  20. Kim says:

    You sound great…just great. I’m so glad you posted this. I can draw on your chemo experience and you can draw on my radiation experience. How about that? By the way, where did you get your hats? I ordered some scarves this morning but am not sure what to do about hats. I’ve never been a hat person before, although I suppose that is about to change.

  21. Matt says:

    You’re sounding good and positive. That’s great. I’m equally sure any support you derive from us is being repaid by an order of magnitude by your informative posts on the progress of your recovery and process of your treatment. Many people will be better informed and less fearful for the knowledge you are passing on. Have a great day.

  22. whymommy says:

    Kim — hats. I ordered from two main places that specialize in hats for chemo patients. I did that because I don’t know how to fit a bald head (so the hat doesn’t slip down over my eyes), and because I was worried about getting ones that would not only be small enough, but also soft enough on the inside and without many seams. I liked Headcovers.com for their cute styles and just ordered a couple more from tlcdirect.org, the nonprofit store run by the American Cancer Society. I’m not sure what will work for me, but it was worth it to me to be prepared. Also, a friend sent me some scarf/cap combo dealies from Buff — these are SO comfortable. I’ve started wearing one now, just to get used to it (since I cut my long hair off already!), and I love it, love it, love it. They’re also good to wear under the $3 baseball caps from Target, so baldness doesn’t show out the back and under the edges. TLC does sell baseball caps that cover more of the back of the head, but they cover the ears too, so I wasn’t too excited about that … I’d forgotten how much fun hats can be!

    P.S. The young survivors group taught me that you can wear hats off-the-rack without hair IF they come down low enough at the back and sides. But you might need to wear a CoolMax headband, Buff, or bandana underneath to prop it up to the proper place on your head.

  23. Susan says:

    You guys have the best attitude! I’m glad things are starting out like this–we’re thinking of you.

  24. Ally says:

    WM, thank you for this detailed description and update. It is so helpful to hear exactly what you’re going through. I am happy to hear that for the most part, the treatment doesn’t hurt, and that you’re feeling as good as can be expected. I will continue to pray that your treatment does the trick, and for spirit to continue to stay positive.

  25. clifford says:

    Sus…you are going to think I’m residing more on the fringe of lunacy than normal, but I just had this vision of you wearing a Coolmax headband, i.e. Under Armour -style, and stomping around the locker room @ Murrah yelling “We must protect this house! Under Armour! Hooah!”

    It was quite funny. Would have been more funny if our soccer coach made an entrance in said vision, but still a fair amount of funny.

  26. Amy says:

    You’re a freaking Amazon. I am in awe.

    (I’ve also had a couple glasses of wine, so just in case it doesn’t translate, a “freaking Amazon,” in Amyspeak, is the highest compliment – meaning that you’re tough, and strong, and awesome, and kicking ass, and I wish I had half of the courage that you have.)

  27. clifford says:

    Not to interject where my opinion wasn’t asked for, Amy, but you’re so dead on. Is tough. Doesn’t realize she’s tough. Always has been tough. Unless she’s late for class, but still tough every other time.

    This shall be a short fight. I suspect IBC will pick an easier target next time.

  28. Kim says:

    Susun Weed has a support book for Breast Cancer treatments. http://www.ashtreepublishing.com/bookshop/breasthealth.php
    And there’s also pot😉

    Thanks for the details.

  29. GTech Doc says:

    Hey WhyMommy. Still following your story, not so much in awe oddly, because your strength and resolve fit everything that I’ve known about you for years. Glad to hear everything is going well so far. Tell WonderDad I’m proud of him too, and am not at all surprised at his strength and supportiveness throughtout all of this.

    The doc side of me is interested in the nausea meds they used. I spoke with a pharm rep a few months ago about a drug called Emend that had been used for a while that they were trying to get anesthesiologists to use for post-op nausea. I know Zofran is pretty popular too. Anyway, like I said, one of the medical things I was pondering while reading your story. 🙂

  30. Jennie says:

    Still praying for you! Go get ’em girl!!!

  31. Emily says:

    Wow. That was so interesting. I guess I never even knew how little I knew about the process till I read this. I’m really glad you have a good nurse b/c I would imagine that makes all the difference.

  32. Aliki says:

    Thank you for sharing this with us–for continuing to educate this community and for letting us share in your courage and spirit.

  33. Jenn says:

    Positive, positive, positive.

    That’s all I’m thinking.

  34. twithhoney says:

    One of things that has amazed me is that almost every woman that has gone through chemo has found the nausea and fatigue to be about the same as their first trimester of pregnancy. It is wonderful to hear that your experience wasn’t awful and your attitude that of a prize fighter!

  35. MC Milker says:

    Whymommy,

    your courage is awe inspiring!

  36. I applaud you for your courage! Your post was so interesting and full of insight. I remember my Mom and other friends whom have underwent chemo stating they always had a taste of metal after treatments . . .

    We’re still sending tons of positive thoughts your way.

  37. Jennifer says:

    Thanks for this very honest look at chemo.

    Keep kicking ass, WhyMommy. Glad you’ve got Wonder Daddy by your side (great name!).

  38. Sara says:

    My Mom was diagnosed last fall with abdominal cancer and after having surgery to remove as much as possible she has been going through a type of chemo for about six months now. I am so glad I found your blog because knowing that others are going through the same thing and having support are so important when fighting cancer. Thanks so much for sharing your experiences with us. You will be in my thoughts and prayers.

    Sara

  39. whymommy says:

    The metal taste appeared yesterday, actually. And today (although we went O-U-T to lunch!) food tastes … different. A sharp cheddar quesadilla was oddly bland, and the cheese dip nothing to write home about. More than a bit disappointing after so much cheese-ticipation round here.

    Sara — your mother is in my thoughts and prayers too now. I’ll be over to your blog next. Thanks for stopping by.

  40. Wow. You did fantastic. I’m blown away (but still cheering!)

  41. Jenster says:

    You make me smile. You’re in the same place I was two years ago – though I’m a little older than you. Still too young for breast cancer and with children at home, but a little older.

    My chemotherapy experience was much like yours. It was almost like a party. The unknown beforehand was much, much worse than the reality of it.

    I’m so glad you’re doing well and YES YOU ARE A SURVIVOR!

  42. Jacquie says:

    “To climb steep hills requires a slow pace at first.”
    Shakespeare

    Day by day you seem to be climbing that hill Go WhyMommy Go, you can do it.

  43. Kami says:

    WhyMommy…I think when this is all done you should compile your posts and write a book! Think how it would help someone to know what to really expect. The not-knowing is always the scariest thing, right? I think you should call it..WhyMommy Kicks Ass. A real life cancer smackdown blogonista style…or something much more whitty and ass-kickery.

  44. […] What’s it like to have chemotherapy? […]

  45. Thank you so much for sharing your story! It is so helpful to see someone’s real life experience and personal views on chemo. There is also a video on the stages, types, and methods of treatment that I found extremely helpful. Hope you do too.

  46. Sorry! I accidentally linked to my own journal. here is the video I mentioned.

  47. mod*mom says:

    good for you to have so much support and no barfing!
    i liked custard + mushroom omelets with avocado during chemo last year (nothing to spicy, sugary, salty or fatty).

  48. KillerBoob says:

    if this comment isn’t redundant by now – headaches may be helped by slowing down the drip. i was stubborn about trying that but finally did and it made a real difference!!

    as for lising hair-i was the same as you – more curious than anything else. it’s an amazing thing to see, and my wonder over rode any feelings about losing it. (the only hard but about losing it was the anticipation leading up to it!)

    keep on keepin on girl. every day down is one step closer to being finished!

  49. […] down in the recliner, and getting my weekly dose of posion.  But it’s not, really.  Knowing what to expect from chemotherapy, and living through a dozen sessions, doesn’t always make […]

  50. Imagine – all this time after you wrote it and this is still getting responses.

    You’re now on the schedule for surgery – and mine’s already done. But because of our different types of breast cancer I’ve yet to learn about the maze of chemo and the rest of what’s to come.

    I’m so glad that Laura Fitton put us in touch and that now I’m ready to read about your experiences, which I admit I wasn’t able to when I was diagnosed, a short 5 weeks ago.

    So tonight, with follow up appointments with 2 surgeons this week, I’m now on a marathon reading binge. And I appreciate you sharing with all of us.

  51. […] terrible disease.  But it’s one that can be fought.  And the fight can be won.  I know.  I’m a survivor.  I’m so close to beating this thing.  6 days (plus recovery and radiation), to be […]

  52. Carolann says:

    I’m a bit late here, but I was just browsing the internet looking for people’s experiences on chemotherapy, because I’m due to start it tomorrow for Hodgkin’s lymphoma…which, mind you, isn’t the worst kind of cancer around. But I’m not that old, and I keep thinking the worst will happen. Plus, a close friend of mine’s dad died of a very rare kind of cancer just last year, and it seemed really horrible. However, after reading this, I feel a lot better, and it amazes me that you have such a bright outlook on everything.

  53. you rock! I posted about my first infusion too…oh i got the comfort cart ladies to actually share an ice cream sundae with me…it was yummy
    my tongue has felt really strange…I suppose in some ways we are kindred spirits…please try to stop by…hope to keep in touch…Jodi

  54. […] to 5k … my way As you may remember, near the end of chemo last year, my legs stopped working.  I couldn’t walk at all because of the bone pain.  When that […]

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