Steroids and Spa Days

It’s just after midnight and I am awake. Last night at 1:46am I ordered a “make your own smoothies with our pre-measured ingredients and recipes” delivery service, scheduled to start next week. That would be the steroids.

I didn’t have any steroids with my first 6 rounds of chemo, the ones before surgery. I was on a clinical trial for a targeted chemo drug, and it had less severe side effects that didn’t warrant preventative measures against allergic reactions. Because I chose to participate in the clinical trial I’m now doing the protocol I would have done before surgery.  Its initials are THP. The T stands for Taxol, the main chemotherapy drug. It’s made from the bark of the Pacific Yew Tree. A Dana Farber nurse who had been around for a while told me that years ago they would still find little pieces of bark in the medicine. I will receive Taxol by infusion every week for 12 weeks.

The H in THP stands for Herceptin. That’s not technically a chemotherapy drug, it’s called a “monoclonal antibody.” The cancer cells I had were HER2+ (a specific type of receptor on the surface of the cell), and this drug is really good at hunting down those cells and preventing them from growing. I will receive this antibody infusion every 3 weeks for a year.

Finally, the P in THP is for pertuzumab or Perjeta, depending on who you’re speaking to. Perjeta is the brand name. This was part of my pre-surgery chemo regimen, it’s another type of monoclonal antibody. This will drip into my veins every 3 weeks for the 12 weeks I get the Taxol—I think. It’s still early in the game, and I’m still learning all the rules.

New rule: while you’re busy looking out for chemo side effects, you may be in a ‘roid rage and not even realize it! Because you totally forgot that you took steroids on New Year’s Day in preparation for your January 2nd infusion!

There are many pieces of good news in this post, and they may not be obvious, so I will clarify:

  1. I start this phase of treatment knowing that I had a pathologic complete response prior to surgery—no cancer cells left where there used to be lots. Things look very different from this scenic viewpoint.
  2. My intention was to have a treatment plan that I could agree to. If I hadn’t done the clinical trial prior to surgery, I would have already done THP and wouldn’t be eligible for it post-surgery. The Dana Farber doctors would have recommended I do a chemotherapy protocol with the initials AC. Nickname: The Red Devil. From what I’ve read, it sounds like it knocks you down real hard while you’re in it. But the issue I would have in accepting this protocol is that the side effects follow you for life. I could drop dead in 10 years from heart failure, all because of that chemo I did back in 2018. As an oncologist friend of a friend described it: “It super sucks.”
  3. The THP protocol has side effects too, some serious (heart damage, severe muscle aches), some just annoying (nosebleeds, neuropathy). I’ll have echocardiograms periodically while in treatment, to make sure my heart is holding up okay (so far, so good). And when I’m done with treatment, the side effects end. They don’t follow me forever. Cheers to that.
  4. Because this is a standard protocol, I can do it at a Dana Farber satellite site, which is a HUGE deal when you’re going every week. I live 30 minutes from the Dana Farber in Milford, and that includes traffic. My community acupuncture place is also in Milford, and there’s a Whole Foods in the next town over. The facility itself is much smaller, parking is easy and free, and I can get reflexology treatments and hand massages while I’m in treatment. Um, it’s basically a spa. I will trade the 5 star cafeteria at the DFCI Boston campus for easy peasy lemon squeezy ALL DAY LONG.
  5. I can drive myself! I am so very grateful to all of the lovely people who took me on chemo and movie dates in Phase I. But those were every 3 weeks, and there were only 6 of them. This is every week for 12 weeks, during Jerry’s busiest season at work. I roll from treatment to Whole Foods to home, all within school hours. Bam!

Tuesdays are my treatment day. Which means Tuesday night and Wednesday are my super duper productive days because…steroids!! I’ve taken steroids before, when I had a horrifying reaction to poison ivy back in 2012. I was so distracted by my desire to peel the skin off 1/3 of my body that I must not have noticed the ‘roids as much. Or maybe because I was actually in a state of allergic reaction, the steroids were a welcome relief. If I’m not reacting to the Taxol, does that mean the steroids have nothing better to do than to make me feel totally whacked out at various points throughout the day? Don’t get me wrong, Danielle on steroids was super helpful last Wednesday as we prepared for a blizzard to arrive. Do steroids amplify our strongest traits, or our most intense neuroses? Let’s just say that my lists have lists and the three boys that I live with are on notice. Don’t cross mama in a ‘roid rage! Oh, and my brain won’t shut off. Which is why I’m here with you and not sound asleep like the rest of my household.

I went to a “Look Good, Feel Better” workshop today at my DFSpa. Myself and another lady got makeup tips, scarf tying lessons, and wig catalogs from a Hawaiian transplant named Toni (it’s her first winter here—yikes). Loads of companies donate products for us gals, everything from cleansing towelettes to nail polish to eyebrow pencils. Unfortunately most of those products contain cancer-causing chemicals (Hint: don’t give the ladies who lean towards cancer products that cause cancer), so I left them behind. Toni gave us some tips on selecting a wig, and she asked for a wig model. I’m not a big selfie girl, but this seemed to good an opportunity to pass up.

Note: these were not my wig choices, just the ones she uses to show people what to look out for.

Toni says that synthetic wigs are way easier to care for, less expensive, and tend to look more real. Who knew?!

This is a wig made of real hair by Pantene Beautiful Lengths. I donated 10 inches of hair twice to Pantene Beautiful Lengths. Apparently they make terrible wigs with really awkward parts (see photo above), which is a damn shame.

That’s our fearless leader Toni! And that is a tricky little fringe that you add to your hats so you don’t have to deal with a whole wig setup. Those crafty folk!

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About Natural Mama Notes

4.4.2020 I started this blog in September 2014. It was a 38th birthday gift to myself, a fulfillment of a long-held wish to share my perspective on the world. After a breast cancer diagnosis in June 2017, I used my blog to share details of the alternate reality I was experiencing. In September 2017 I used this space to share the trauma and healing of my son, who was diagnosed with PANDAS in May of that year. PANDAS is when a strep infection triggers neuropsychiatric disorders. I completed cancer treatment in December 2018, and haven’t written much since. I felt the need to withdraw as part of my healing process. I deactivated my Facebook account, barely viewed other social media. I’m still hesitant about stepping back out there, but I’m feeling the pull. We’re in a global crisis, and the news is dire. If I can add some levity or a more positive perspective with my writing, that is my hope right now. May you find the gems amongst the rubble.
This entry was posted in cancer, chemo, Dana Farber Cancer Institute, Experiences, gratitude, Healing, Health, hospital, Steroids, weird, Wellness and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

6 Responses to Steroids and Spa Days

  1. Katherine Missett says:

    You’re awesome, Danielle. You really have such a great attitude and are such a beautiful person inside and out 🙂 I hope this THP protocol goes well and isn’t too harsh on your body. I know you and I’m sure you are taking really good care of yourself nutritionally but don’t forget to get plenty of rest when you can. I too took steroids for a really bad poison oak outbreak. Turned me into a raging lunatic. Just remember when and if you go crazy it’s the drugs, not you 🙂 Love you!

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  2. kmmissett says:

    You’re awesome, Danielle. You really have such a great attitude and are such a beautiful person inside and out 🙂 I hope this THP protocol goes well and isn’t too harsh on your body. I know you and I’m sure you are taking really good care of yourself nutritionally but don’t forget to get plenty of rest when you can. I too took steroids for a really bad poison oak outbreak. Turned me into a raging lunatic. Just remember when and if you go crazy it’s the drugs, not you 🙂 Love you!

    Like

  3. You look amazing Danielle. My wife is going through similar, my hear goes out to you x

    Liked by 1 person

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