All Aboard the Struggle Bus

I’m nearly six weeks into my fourth line of treatment – weekly infusions of Taxol, an IV chemo. My hair is long gone, and with it, my energy, and my ability to do almost anything most days other than sit on the couch and re-watch Queer Eye. (I’m not a TV person, at all, so this tends to be a last resort for me). I didn’t fully appreciate how hard chemo would be for me. And, honestly, it’s been so incredibly hard.

After my first infusion, I really struggled. All of it hit me so hard – the stress, the anxiety leading up to it, the fear, the anger (so much anger). Not to mention the actual drug. When receiving IV chemo, you’re often given a dose of pre-meds prior to the infusion itself, to help alleviate some of the more difficult or toxic side effects. In my case, I was given a large dose of benadryl, in case of an allergic reaction, and a steroid, as a precursor to the chemo infusion. We learned very quickly that this is not a good combination for me. The benadryl made me very sleepy – I couldn’t keep my eyes open, but the steroid made me jumpy and feel like I was crawling out of my skin. I couldn’t sit in the chemo chair, and took my IV stand for a number of laps around the nurses station, making everyone fairly nervous because I just couldn’t sit down. This was also an issue because, during the infusion, I am supposed to keep ice packs on my hands and feet to prevent neuropathy and fingernail loss. Thank god the infusion is only an hour, because it brings out the worst in me.

The next morning, I woke up bright and early at 4:00 am, because steroids are fun. I couldn’t sleep, but couldn’t actually do anything either. The following day, Friday, I was so achey and exhausted that I couldn’t get off the couch. Had I not been warned that this was to be expected, I honestly thought that I was going to die, right then and there. Slowly, day by day, my energy crept back, just in time to return to the chemo chair for another round. This time, I was prepared for the exhaustion. I tried to rest for the few days afterwards, but also to stay active, and walk around to help with my joint stiffness. My joints ended up not being the issue that week – my stomach was. I woke up on Saturday morning with my GI system in full revolt. After a call to the on-call fellow at the cancer center, who reassured me that this was a “perfectly normal” response to Taxol, I was back to the couch for yet another day (along with a couple of new anti-nausea prescriptions).

The following week, I finally got a small reprieve – my pre-meds were adjusted so I no longer had to suffer through the mania of the Benadryl/steroid combination, and received an oral antihistamine, and no more steroids. That made a huge difference. Yes, I was still completely wiped out, but I no longer had the rollercoaster-crash effect of the steroids. Now, I was just really tired for a few days after the infusion. Oh, and all of my hair fell out. Seemingly at once, and in a painful, and surprisingly traumatic manner. We ended up shaving my head that Friday because I was shedding at such a surprising rate. After the three weeks of infusions, it took me a full week to recover. and that summed up the first month.

Now I’m two infusions into month two. My arms are covered in a litany of bruises from resistant veins (no port yet), and I’m adjusting to some nausea and reflux – each week seems to bring with it yet another round of side effects. I have quite a bit of bone and joint stiffness. Lastly, the chemo brain fog has been real, and brutal. It’s often hard for me to concentrate, even in conversations. Text messages can be exhausting and frustrating for me, let alone trying to have a conversation or effectively parent. I vacillate between the struggle to recognize my new normal and the need for others to recognize that new normal as well, as I often do not have the energy to articulate those nuances. I don’t have much other language for things right now: they are really hard.

19 thoughts on “All Aboard the Struggle Bus

  1. Chemo is so tough and this sounds really, really tough. As in all your posts, you bring us vividly into the experience. (Your writing is exceptional, even with brain fog!) Thinking of you, Emily, and your family and sending love.❤️

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  2. Emily, I don’t know how many more chemo weeks that you have to endure, but I hope that it will be done with soon and that you get positive results from the treatment. I can understand your boredom with the TV what about radio programmes or audio books? Wishing you the very best. xxx

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  3. Same here, Emily, only I knew going in that I can’t handle steroids, so I had the same protocol as yourself only without them..and no one gave me Benedryl ,either.
    The side effects were, literally, unbearable. I never went back.
    Even with just the one round, I had cognitive problems for a year after.

    You’re really taking it on the chin..I’m sorry you have to endure this. Just know a lot of us are sending you love and strength.

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  4. Love you and your family, Emily. You are in our thoughts and prayers. You did an amazing job expressing this experience.

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  5. Emily, please know those of the New Life family in Midlothian, VA are praying for you and the family. May God grant you comfort, healing and persistence in the treatment process!

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  6. Emily, I’m late to your blog but have greatly appreciated you sharing your experience over the past two years. You are a phenomenal writer and have a gift for bringing an immediateness and vividness to a side of life that is often only whispered about. Lisa and I are hoping for you from Seattle. -Theo Ellis

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  7. Emily – I am late to your blog but thank you for sharing your experience. You are a phenomenal writer and bring immediacy and vividness to a side of life that is often hidden from view. Lisa and I are thinking of you and hoping for you from Seattle. -Theo Ellis

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  8. God bless you, Emily as you go through these treatments. Reading your post reminded me of my treatments during 2014 – 2015 after having a left breast mastectomy. I was recently diagnosed with metastatic breast cancer on my spine. After SBRT radiation treatments, I am taking Ibrance, 21 days on and 7 days off, get monthly injections of Faslodex and a monthly infusion of
    Zometa. I pray God will heal my body of cancer and help me stay positive on this journey.

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      1. I have been on falsodex and Ibrance for 1.5 years. Ibrance can cause explosive diarrhea. As soon as you have had your second stool in a day take Imodium. Do not eat spicy foods. Falsodex injection can cause granulomas. Make sure they rotate sites. Massage injection sites to keep the muscles soft.

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      2. Hi Sharon Thanks for responding to me. I’m now in my third cycle of Ibrance & Faslodex. I do not have diarrhea but I am having thinning of hair. Have you? And some LOW WBC.

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      3. Hi Kate,
        I only have diarrhea once in a great while and it usually has to do with something I ate. I do have thinning of hair which I can hardly afford, since my hair was always thin anyway. I seem to be extremely tired all the time and sometimes I sleep all night and all the next day til late afternoon, and still feel rested even then.

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    1. Beverly, I found my own breast cancer around 2009. The doctor kept saying that my mammograms were clear. I had an itch almost under my left armpit that would not go away and I could not reach it with a fork or a brush, let alone my fingers, because apparently it was so deep. I insisted on a biopsy and the surgeon said he could not even find a clear margin…that the cancer was half way across my left breast. I had a double mastectomy because I knew cancer spreads. I took Tamoxifen for 5 years. About a year ago now, the cancer tried to come back. I never had chemo or radiation. Was on Faslodex and now Ibrance and Letrozole and supposedly I will get some sort of shot once my major dental work is finished. They cannot give the shot if you have major dental work.
      My thoughts and prayers are with all of those of you who are going through this nightmare and may all of us get back to very good health as soon as possible so that once again we can enjoy life

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  9. I was first on Tamoxifen for 5 years, right after I had discovered the cancer myself. There were no lumps, bumps, etc., and all I had was a severe itch almost totally under my left armpit. The doctor kept saying that my mammograms were clear, but I ‘demanded’ that he biopsy that area, since nothing would get to the itch (hairbrush, fork, etc.). He sent me to a surgeon who said he was not even able to get a clear margin, so he said my left breast needed to be operated (cut off). I told him to take both breasts off because the cancer could spread. After 5 yrs. of Tamoxifen, I was put on Faslodex, which eventually stopped working. I have now been on Ibrance and Letrozole for just a few months, and am waiting til the oncologist can give me whatever type of shot he will be adding to the two pills. He has been unable to give me the shot because I was having some major dental work done, which is almost finished. I don’t know the name of the shot. I had hoped that all the pills, shots, etc., would get the cancer totally out of my body, but so far it has not. I was taking CBD Oil for severe pain in my demolished low back due to an old job accident, and the CBD seemed to have taken my tumor markers way down (20). But after my family doctor refused to give me any more pain pills for the severe 24/7 back pain because the CBD had shown up in a urine test, I went off the CBD and the tumor markers went right back up; they were 51 about a month ago. I have now been buying CBD full spectrum oil at a Dispensary and no THC has been showing in my urine test, so I can get pain pills once again for the severe back pain. I showed the family doctor’s lab report, showing THC, to the owner of the other shop where I had been buying CBD oil and he claimed there is no THC in his oil. From then on, I have been buying CBD oil at the Dispensary. I live in Arizona, where marijuana is illegal except with a physician’s approval.

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