Me & The Red Devil: Chemotherapy the Second Round

Any way you frame it, chemotherapy is no walk to the park. There are good days and there are bad days, and all of it is out of your control. Many of the side-effects you might suffer depend on which chemotherapy drug you’re given. People react differently to different cocktails, and no matter how much research you do, you won’t know how you react to your chemo until it’s pumping through your system. At least I didn’t. For us, nothing about my breast cancer and it’s treatment has been predictable.

IV Fluids, Chemotherapy, Caitlin Marcoux, Breast Cancer Survivor

checking into the hospital for i.v. fluids post-chemotherapy. September 6th, 2013

People in the know will tell you A/C is the worst. They call it the Red Devil. There are multiple urban legends circulating in the breast cancer circles about how this life-saving yet toxic drug earned its nickname. It has a broad range of side-effects including HEART FAILURE and get this, Leukemia. It’s the heavy hitter they say; much harder on the system then Taxol.

It comes in a syringe instead of an I.V. bag and needs to be slowly injected into your port or peripheral veins carefully, so as to not damage near by tissue. The infusion nurse who administers it will approach you with a battery of personal protective gear: gloves, a paper dressing gown, face mask and even goggles.

They’ll tell you you’ll pee it out (it turns your urine red), and to be sure to flush the toilet twice if not three times. They’ll makes you wonder  what A/C is doing to our planet, not to mention the insides of your own body. You’ll wonder what damage it’s causing as it makes it’s way from your circulatory system to your kidneys and bladder and eventually the sewage system.

I’m grateful for A/C, but it’s a powerful drug.

Following the tough time I had with Taxol in the spring, I was nervous to start A/C this August, and nervous more for the many ways in which it might effect my life. Having survived three months of chemo and a double mastectomy, I have to admit I’ve been ready to get back to my regular life. The break I was given following my surgery gave me a taste of living a normal(ish) life again, and I was thrilled to have enough energy to teach some yoga and play with my son.

The days leading up to my first infusion on August 21st, I began to worry. What was A/C going to do to me? Would I loose my slowly growing hair again? Would my eyelashes fall out again? How much sleep would it interrupt? Could I finally return to the gym? Do a handstand? Or would I be back on the couch every afternoon?

I wondered, how much of the Red Devil’s legend was true?

The Red Devil, Chemotherapy, AC, Breast Cancer Treatment

The Red Devil

So far, I’ve been pleasantly surprised.  I’ve had two of the four dose dense infusions I’m scheduled for through October and I’m really only sick for the first 3-4 days following the actual treatment. As my white blood cell count drops again around day 7, I get pretty fatigued and my immune system wears thin. But seriously, I’ve been tired for 6 months, so a little more exhaustion is no big deal. It’s certainly a lot less than other people have to deal with.

I have to admit that the second treatment was harder than the first, but that still, looking back on how I felt in the middle of my 3 months of Taxol, the last 3 weeks haven’t been so bad. Some days I’m nauseous and tired and other days I feel like a perfectly healthy human being.

When I went up to Boston for my second infusion of A/C on September 4th, I wanted desperately to go out to dinner that night. I put much thought into finding a special place to meet my pseudo in-laws, who drove 90 minutes each way from NH to meet up with us.

My partner and I spent the day at MGH and I finished my infusion in time to change into a pretty dress and jump in a cab. Sadly, and very much against my own will, 45 minutes into dinner, I was making frequent trips to the bathroom. Socializing in a predictable and schedulable way just isn’t part of my repertoire yet.

Our evening interrupted, we rushed back to our friend’s Clarendon street home, where I spent the next 2 hours on her bathroom floor.

A/C, Chemotherapy, Caitlin Marcoux, Breast Cancer Treatment, The Cancer Diaries

A/C number 2: September 4th, 2013

Feeling broken and in pieces, Burr and I left Boston the next morning.  We arranged for a wheelchair to meet us curbside at Logan (a brilliant perk everyone dealing with acute illness should take advantage of if they have to deal with air travel) and hopped on a donated Cape Air flight made possible by my friends over at P.A.L.S.

Patient Airlift Services is a wonderful charitable organization which: “arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes. Our network of volunteer pilots provide this service without compensation using their own or rented aircraft. In no case are fees of any kind charged for these services. PALS flies as far South as Virginia and as far West as Ohio.”

We arrived home mid-morning and I more or less crawled into bed.

The two days following my second infusion were brutal. On the third day I was dizzy, nauseous, and struggling with a gnarly headache. After speaking to my oncologist in Boston, I checked into the hospital here in Nantucket for three hours of I.V. fluids and anti-nausea meds.I left the hospital feeling like a much more complete person, and feeling fully recovered 24 hours later, stuck my first handstand in 2 months the  following day.

Sure, there are other minor annoyances. My hair follicles are irritated and angry again. I’ve got lots of little hot bumps on my scalp and on the back of my neck. I don’t often feel pretty, and it looks like I’m about to loose the baby hair that’s been growing back since my surgery. I scratch my head compulsively. Some times my belly gets oddly distended as soon as I eat the smallest of meals, and my cycle is all over the place. I cry for no apparent reason at all, often. Let me stress the word often.

But everything is temporary.

The storm surge that is A/C is over as quickly as it comes on. 4 days after my second infusion I felt fine. Really, like 75% normal. That Saturday night Burr and I rode our bicycles into town and he took me out to dinner. After sitting at the Proprietor’s bar for a couple of hours, I still had enough energy to ride all the way home to Cisco. I taught yoga the next day, and  4 more consecutive classes in the following two days: the most active work I’ve done in 6 months.

That all being said, I do have anxiety about Adriamycin and Cytoxan’s cumulative side effects. As I’ve been told to expect things might get worse before they get better. For me it’s pretty simple: I either feel bad, or I don’t. Thankfully right now, the good days outweigh the bad.

I am very, very grateful to be as healthy as I am, and thrilled to reassure my sisters in treatment that life can still go on.

A/C, Chemotherapy, Caitlin Marcoux, Breast Cancer Survivor, Mastectomy, new boobs

A/C infusion number one: August 21st, 2013

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As an aside…

I consider myself damn lucky to have a cool and innovative general contractor for a boyfriend. He’s really come in handy during this whole cancer thing. I could wax on and on about all the big expressions of support he’s made over the last 6 months, and all the little ways in which he’s made my life better, but for those of you who’ve been following my journey and are in active treatment yourselves, let me just mention the most recent idea he’s come up with which has given me some of the biggest sighs of relief since re-starting chemotherapy on August 21st: The Frozen Hat.

If you are in the process of loosing your hair (as I am for the second time this year) and suffering from an itchy, hot, irritated scalp, you need to try this at home. Take your two most favorite, preferably soft cotton hats and stick them in the freezer. You can put a plastic bag full of ice cubes or a plastic or jell cooler pack inside the hats, or  use whatever’s handy in the freezer: a bag of frozen peas for instance is perfect.

Once the hats are sufficiently cold and crispy: VOLA! Your own homemade Cold Cap. Place one hat on your head, and breath a sigh of relief. As soon as your hot head has cooled off one hat, you have another one waiting in the freezer to replace it with. Switch out as necessary. Enjoy.

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 {My Cancer Story: The Beginning}

(Making the Breast Decision)

(Life After the Knife)

{How to Talk to Someone with Cancer)

(Let’s be Friends)

Comments

  1. Your smile always blows my mind Caitlin! Through all this it has shined so brightly. I am so happy your are on the other side and this part of the journey is ending soon!! I am hoping to make it to ACK in the next few months and if so WILL be in at least one of your classes! Maybe next year the retreat to VT will happen??
    Much love and light to you..
    TIffany

  2. Meeting you for dinner in Boston after your 2nd treatment was still very much a wonderful experience. You looked great, even though the nausea crept in and interrupted the evening. I think of you often and am amazed and admire the public narrative of this difficult journey.

  3. Caitlin,

    I don’t have cancer or know you personally, but I always appreciate reading your blog posts. I can’t imagine the strength it takes to survive what you and so many other people are going through. And then to be able to write about it all so eloquently! So many people are rooting for you, and you are helping other people by sharing your personal journey. Thank you.

    Stephanie

  4. I want you to know that this post was a giant gift of hope in an otherwise panicky day.

    The short version: I’m a committed Ashtangi and love my practice and am terrified that I won’t be able to practice the way I’d like to with a port in place. My sane side tells me I’ll have a good, even challenging practice with plenty of opportunity to keep the strength I’ve worked hard to cultivate. The panicked side of me things, “Four months of no backbends? No chaturangas? Nooo.”

    I read this and I think, “It will suck. But I will be okay some days.”

    Thank you, from the bottom of my heart. Your words helped me today. xo

    • caitlin says:

      Hi Sarah!
      I’m so sorry to hear you are on this journey too. But I’m glad you reached out, and I’m happy that my posts can give you a little encouragement and insight. My port was uncomfortable the entire 9 months it was in my chest – BUT I did continue to practice, and I did continue to do a modified chaturanga (more because of failing strength that because of the port) and I did continue to backbend – including wheel. Who said not to backbend for 4 months?
      Love,
      Caitlin

      • You’re so kind to respond. I should apologize – I wrote in the middle of a straight up panic because I hadn’t received clear guidance on how the port might affect my physical activity (energy and strength levels notwithstanding); I think I misheard or my oncologist misspoke when he said “it’ll take 4 to 6 weeks before you can practice.” Either way, I decided to start making assumptions and believing anything I’ve seen on a discussion board or Google. Here, I found a little bit of hope and clung to it hard. I wasn’t expecting the fear to be as strong as it is.

        I’ve since talked to a nurse about it. She advised against any deep backbends or poses like flip dog (a backbend with an arm extension). The only yoga-related port mishap she’s seen is someone who actually flipped her port over. (I guess they could correct it easily enough by manipulating her skin, like a massage.)

        The good news is that most of the primary series is still accessible to me. Tomorrow, I’ll have to enjoy my last kapotasana…for a while. I’m still a little blue about it, but it’ll pass.

        I promise I’m not usually a panicky, emotional mess like I must sound like here. Thanks for listening.

  5. Your article will help me to understand what my daughter is facing. She took her Red Devil treatment today. She lost both breast.

    • caitlin says:

      Wanda, I am so sorry to hear that. If I can be of help in any way please let me know. xo

  6. I am glad there are people like you that care enough to let us know your experiences so we know what to expect, I am about to get my second infusion of the red devil and I am terrified I had a very bad experience with the first one I had to check in the emergency I thought I was having a heart attack, I hope I survive the four treatments of ac followed by four treatments of taxol, the oncologist wants to shrink the tumors before surgery.. God bless you.. And thanks!

    • Hi Maria,
      How are you feeling? Are you done with AC? Let me know if I can help in ANY way.
      Love,
      Caitlin

  7. Just finished Thursday my second round of A/C. So thankful I only have 2 more left and then 12 Weeks of T. I am nausea today, Hopefully tomorrow will be a better day. It helps to hear others stories of what they went thru.

  8. I did not want to do my last Chemo red devil, but after reading your article it gave me hope. Thank God there are people out there like you.

    • I’m so glad to hear I could contribute to your forward trajectory of your journey. Stay strong sister. Victory is just around the corner! Love, Caitlin

    • Isabel – my heart goes out to you. Chemo is just terrible. I’m glad you were able to draw some hope out of my diary… There are also a number of women in the comments above who are right there with you, in the middle of this transformation. We Cancer Kicking warrior ninjas have to stick together. All my love, Caitlin

  9. lisa weedn says:

    Bless you, Caitlin… I begin A/C on the 23rd of August… I’m part warrior, ready to kick this damn disease out of me, and part terrified I’m about to melt into some toxic heap… Yours is the first account of chemo I can actually put my arms around. Yes, it will be hard, but I will absolutely get through this… You are a beautiful inspiration… Thank you so much xoxo

    • Lisa, you ARE a WARRIOR! And you are NOT going to melt into a toxic heap. Well, you might, but it will be TEMPORARY. This will be your initiation into a life of true gratitude. The toxicity is like a rite of passage – and you will come out the other side a Ninja. Thank you for reading and commenting… if I can be of any support, please let me know. All my love, Caitlin

  10. I found your posts while googling effects of the red devil on the patient. One of my besties is currently post treatment #2 of the red devil and she never complains and is always positive and smiling (until you get her to be truthful in private 🙂 ) You remind me of her in all of your posting and I wanted to say thank you for making your jouney public. Reading cdc literature and such never puts the human element on this. I am wanting to send her a care package is why I started researching the effects. Anyone can send cookies and such but I wanted to know what she is really going through and what I could send to ease symptoms a bit or just brighten her day because someone “gets” what she is going through in private. Loved the cool cap suggestion and will definitely pass that along.

  11. Caitlin, treatment #2 hit me like a freight train, just hard and fast. Like you, the night of infusion I planned a dinner with my family but by 4:00pm I started feeling lightheaded and out of it. Does each successive treatment get “worst”? With my first dose I was okay for 2 days then it hit. But this last one was strong and tough. I’m on day 7 now and feeling better but not great yet. Luckily, I don’t have nausea just extreme fatigue and lightheadedness.

    I have 2 more treatments, 2 weeks apart of AC before I start my taxol. Any advise for me? Thank you, Leslie

    • Dear Leslie,
      My apologies – I have been so caught up in single parenthood, and this emotionally draining rollercoaster of an election, I’m afraid I’ve been away from my blog for some time. But I am here now, and with you in solidarity. To answer your questions, yes- I felt my treatments were cumulative. This may or may not be your experience, as everyone seems to have a different take. I would expect you know by now, as you post was nearly a month ago. I wonder, how are you feeling? You must be on your 4th AC tx by now?
      I would strongly urge you to carve out time for self-care. I found weekly massage and chiropractic treatments to be VERY helpful both for my stressed out body and spirit, and the consistence of that human touch to be food for my soul. I would try NOT to plan things, and simply allow yourself to go with the flow.
      Not to worry you, but I found Taxol to be much harder on my body than AC. MOST women have the opposite experience and fell AC to be the worse of the two. I’ll be curious to see what your experience is.
      What’s happening for you now? Fill me in.
      With LOVE,
      Caitlin

  12. God Bless you. I have a friend starting the Red Devil this week. May God give you both the strength to endure and overcome to side effects of these treatments and become whole and healthy again. Hugs and prayers!