Week 6 – Chemotherapy side effects. Tears, frustration & gratitude

Week 6

8/22/13

Chemo round 3, 2nd week of recovery

My chemotherapy and the side effects

I had no real idea what chemo would be like even though I’ve seen people go through it.  I’m assuming most others do not either, so I’ve decided to write about my experience thus far.  Perhaps it will allow those in my life a clearer picture of what it’s like for me.  Maybe someone will read this and it will help them navigate if they get cancer. There are MANY cocktails of chemo and no one responds exactly the same way to the any treatment.  It’s impossible to predict completely.  For me, the loss of control is one of the hardest parts of this process.

The questions I had, and some I still have, that others may share:

What will chemo feel like?  What are the side effects?  Can I still work?  Will I be throwing up all the time?  Will I really lose my hair and when?  What is “chemo-brain”?  Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?  Will I have ‘moon face’?  What’s happens to my skin and nails? Will my old fibromyalgia re-emerge? Will the chemo kill me?  Will I wish I were dead instead of having it? Will it hurt?  What else might happen? Will I need help?  How much? Who will be there with me and who will not?

My Chemotherapy Details:

Type of chemo:   ACT. “ACT” stands for A-Adriamycin, C-Cytoxan, T-Taxol. One of two main breast cancer regiments for Invasive Ductal Carcinoma.  Given intravenously via a port placed in my chest.

Frequency:  Chemo every 2 weeks.  Shot of Neulasta exactly 24 hours after chemo ends.

Location: Both my chemo and shot must be administered at the hospital.

Duration:  16 weeks total.  8 treatments.  My chemo started in mid-July and will conclude at the end of October 2013.  Each treatment (so far) takes up a full day and I’m at the hospital from about 9 or 10AM – 4PM.  The Neulasta shot appointment takes about 45 minutes.

Side effects (so far) Simply add “extreme” to each: fatigue, steroid rage (sleepless, jitters, tears, anger, out of control feeling) chemo brain (foggy, loss of memory, no ability to connect the dots quickly,) hair loss, nausea, night sweats, mouth sores, dry eyes, dry skin with rash, bone aches, blurred vision, weight loss, headaches, constipation, weak voice.  8/24/13 – I’m at week 6 of 16 and during the AC portion of the ACT treatment.  Who knows what T will bring.  I’ll update this post as I go.

My Experience with chemo so far:

Yes, really, much of it sucks.  No way around it.  There are beautiful moments when I appreciate my life, friends and family like never before, but overall “it blows,” as one of my new COO business clients, put it.  He’s right, and I love that he used that phrase as it made me laugh.  Yet, it’s not as bad as I expected it might be.  Life doesn’t stop during chemo.  It’s not like hitting a pause button where you just pick it up again after it’s over.  No, I’m right in the middle of it and life continues – I’m still part of it, but the side effects make me different.  I try to remember, the side effects make me sick, I am not sick.  Although my mind doesn’t completely quit working, it just doesn’t click as quickly or connect the dots as fast, if at all, during the bad days.  I’m not actually throwing up, I just feel waves of nausea throughout the day.  I’m dizzy and off balance.  I can get up and out of bed every day, but the problem is I neither have energy to do anything nor can I be still.  There are steroid and chemo chemicals rushing through my bloodstream and coating my mind in ways that make me feel both hyper and exhausted yet unable to do anything about either.  Where I thought I would have more “choice” over how I felt or dealt with these moments, I find I’m unable to think clearly enough to choose most of the time.  I just “am” during those times and it’s incredibly frustrating.  “Who stole my sharp mind and when will I get it back”? I ask myself.

Hair loss:

Funny, I wrote this entire post before I realized I had forgotten to mention hair loss.  The thing I was most afraid of has now become a small detail I could miss. It started falling out immediate after my 2nd chemo treatment (week 3).  I cut it short (see http://friendsofkimberli.com/week-2-finding-beauty-4-haircut-extravaganza/ during week 2, as everyone told me this would be less traumatic and messy. They were right, and that photo shoot was fun for me.  Find a great hairdresser like Tamara at Oranj Studio to do it!  Right after my 2nd treatment it started falling out on my pillow, in my hands, in the shower.  It came out evenly at first, not in patches, so I was able to wear short but thinning cut for another week. Finally, at the beginning of the week it was falling out everywhere becoming messy and stressful.  It was time.  I called Tamara, she came in on her day off, and together with my little brother, Dean, we had another little party and shaved it. Not all at once, but in stages.  We even tried a mohawk!  In the end, I was bald as a billiard ball and laughing.  I looked good.  Tamara was fun. It was going to be okay. Dean and I called sister Katy and we met for dinner outside at Ken’s Artisan Pizza.  We sat outside on a hot summer night and I tried out being bald for the first time.  No one stared.  No one laughed.  I don’t know what I expected, but it was all relatively normal as I felt okay with it. I was tired from the chemo, but needed to be in public to begin to ‘feel’ what being bald was going to mean, to mean whether or not I would cover it up immediately.  I decided to just be with it for a couple weeks until I was comfortable.  It’s summer, hot and wigs make it hotter.  After 3 weeks of doing this I still prefer bald or just a little hat.  I pretend I’m a super model on assignment.  That is not to say that I don’t miss my long red hair – I do.  However, I’ve just decided to embrace my temporary state of being bald and try to have fun with it.  I look in the mirror and still see me.  My face, my body, my head. It’s been far less traumatic than I thought.  I like the way the wind and the shower feels. I love it when someone asks to touch my head.  It feels wonderful.  By the way, other hair falls out, too.  For whatever reason, I don’t ask as maybe the chemo just forgot and I don’t want to remind it, I still have my eyelashes and eye brows. Thank you!!! No more shaving my legs or arm pits, though.  That’s a nice bonus.  Oh, and one I didn’t think about before, which was a little shocking, pubic hair.  Gone, too.

Steroids & sudden temporary menopause:

I cried tears from my ears after bawling on the acupuncture table and then sitting up.  I cry over anything right now.  Seriously, the Lindsay Lohan interview with Oprah made me bawl.  Ask me about how I’m doing on one of these days, I’ll cry.  Ask me how my cat is doing on one of these days, I’ll cry.  I may also suddenly snap at you.  Please don’t take it personally, I can’t help it even though I try.  According to my cousin, Linda, who has shared this cancer experience and is a huge help in guiding me, this is called “roid rage.”  I looked it up on the interwebs and it’s true, as are all things found there.  I feel out of control at some moments.  Mostly it’s unexpected tears, but sometimes it’s utter frustration with myself and anyone who happens to be around me.  Apologies in advance.  The steroids are really the worst part of chemo so far for me.  I hate not having more say over my emotions or at least having them be logical and connected to something that’s real.  Yes, I can cry over having cancer and the changes it’s brought to my life.  However, even when I don’t feel sad about it my body is reacting with a flood of tears I can’t stop.  Damn it, I just cried writing this!  The treatment is also forcing my body in to a sudden temporary menopause. Oh, what a lovely little glimpse of the future that is.

I want my world to still be extraordinary, creative, full of passion and love.  However, the parameters and measures of what these things mean can not be the same as they were before chemo or I feel like I’m failing.  In order to feel content and happy I have to restructure what living fully means to me now.  I also have to allow those measures to change daily as I recover and can do more.  The 5 days after chemo have very different benchmarks than days 8 or 9 and still different from days 13 and 14.  Even that tentative schedule will change with the next new chemo drug starts for the last 2 months.

October 3, 2013 Week 12 update  I’m now more than half way through chemo and have had two treatments with the T part of the treatment Taxol.  My side effects have changed.  While I still have the chemo brain and fatigue I do not have as much nausea.  I require only one of the the three nausea medications I did during the AC part. I’m no longer losing weight.  Note: contrary to popular belief most people actually gain weight during ACT as the metabolism slows down like in menopause. I no longer have blurred vision and mouth sores.  The mouth sores became so bad bad at the end of the 4th AC treatment I needed antibiotics. I have three new side effects with this drug.  Pain, hot flashes, neuropathy (numbness in hands and feet). The pain is centered in my long bones, arms and legs, for the first several days then lingers in my hands, hips and knees toward the end of the two week cycles.  I have pain medication that takes the edge off, but does not take it away. Sleeping is a problem due to the pain the first 5-7 nights.  Hot flashes started on the 2nd Taxol treatment and where every half hour for the first day.  A sneak peak at menopause!  I was happy being blissfully ignorant thank you.  The neuropathy just started last night (week 12, 9 days into my 2nd Taxol treatment) when suddenly my toes began to tingle.  I’m worried about my fingers as they happen to push a shutter button and play guitar strings and piano keys.  For some people it’s temporary and others permanent.

 

What happens:

The Day Of Chemo:  It’s not so bad.  I was frightened to be in the room when the oncologist first walked me through it before I started.  However, this day is not the most difficult one, by far.  The room at Providence Portland Hospital has nice comfortable chairs for the patients and additional seating for your family member or friend to come with you.  It’s bright and open. There are anywhere from 15-30 people there each time.  The people there are all ages, races, types and stages of cancer and chemo.  It affects anyone as is evidenced by the variety sitting with me every other week.  I check in around 9 or 10 AM each time.  A nurse weighs me, checks my vitals, asks about side effects and sees what they might do to help with them.  I love my nurses.  Every once in a while, I don’t know the schedule, I meet with my oncologist, who reviews my progress.  Then I walk back to the chemo room where (I hate this part) the nurse punctures the skin over the port in my chest and inserts the IV.  Yes, it hurts.  I’m sensitive to pain with my lingering fibromylgia, so it hurts a lot.  Yes, I cry, but not so much over the pain as the knowledge of what’s happening.  Once the first tear wells I can’t stop the others.  After the blood is drawn then I have 45 minutes during which I escape and go outside.  My mom or my mom and friend/honorary sister, Janis, have been with me at each of the previous treatments.  When the blood work comes in they check my red and white blood cell counts as well as all the various acronyms, then decide if I can have chemo that day.  So far so good!  Then my nurse for the day hooks up my first IV and begins the first bags of anti-nausea medication. I’ve usually been there about 2 hours by this time. Buzzers beep around the room as other people finish their bags of concoctions and I wait for mine to beep in turn.  In the meantime I can be on my computer, talk, read, watch a movie.  Not bad!  My buzzer beeps and a new bag of steroids is hung and begins to drip.  I start to feel kind of strange at this point, although it is not immediate.  Just strange.  More buzzers and the lovely nurse comes to start the first bag of chemotherapy.  I begin to feel a little sick at some point during this bag but the nausea medication keeps it in check.  The last part is administered by hand via two large syringes full of red chemo drug.  I think this is the Cytonxan, but I don’t actually care to ask.  This one is given by hand and very slowly as I get a massive headache when it goes in too fast.  I just get a bad headache when it goes in slowly.  Then that’s it, around 6 hours from the time I started I’m finished.  I don’t really feel bad, I feel wired and slightly sick.  The steroids are still overriding the other drugs and I’m not tired at all, but I’m don’t feel normal.  I’m starting to experience the jittery anxiety as well as the beginnings of the chemo brain fog that will descend upon me over the next two days.  The night of the chemo treatment is very difficult.  Even with prescription sleep aids, I’ve been up most of the night.  Since my brain is still pretty clear I’ve just gotten up and either written for the blog or tried to watch movies.

The day after chemo treatment has also been relatively good.  I’m still buzzed on the steroids, shaky but mostly able to function.  On this day, exactly 24 hours after the chemo treatment ended, I go back to the hospital for a shot of Neulasta, either by stomach or arm, to build up my white blood count and immune system.  My red blood count continues to drop regardless, from what I understand.  I am currently at the low end of the normal range on both.  I have acupuncture appointments 2-3 times per week.  I don’t know if they help or not.  How do I know?  I feel bad then I feel bad some more later.  Same with shiatsu.  The Neulasta brings on pain and achiness in the major bones.  My thighs and hips begin to hurt, or sometimes it’s my humerus (upper arm) bone and shoulders.  Sometimes the pain just roams in those areas.  I alternate between Advil and Tylenol every few hours.  This is in addition to the daily steroids and 3 nausea mediation that need to be taken around the clock at specific times.  Add sleep meds and supplements, and you have a boat load of pills and 80 oz of water each day.  That night and day 3 I begin the major skid into begin feeling both exhausted and wired.  In addition to the nausea, the night sweats begin so badly I have wake up every few hours to change my clothes and sides of the bed.  Throw in complete brain fog, dizziness, blurred vision, mouth sores, dry eyes, dry skin with rash, headaches, constipation and a froggy little voice that makes all my callers ask, “Did I wake you up?”  “No, I’m just being froggy.”  There is no such thing as work for me during these first days.  The last round the symptoms were the worst for 7 days than slowly lifted on days 8 and 9.  Add sudden tears or anger from the steroids to that mix and try working.  I’ve felt everything from relief and happiness to be in my studio to total overwhelm and frustration when I tried to work on days 7,8 and 9 this week.  Next week I haven’t booked anything before day 10, which gives me 4 days of work every 2 weeks, at least for the next round before I begin the new chemo drug regiment.  Everyone responds differently, this is just what I can handle right now.

Days 10, 11, 13 and 14 my mind becomes much more clear again and my energy begins to return.  It’s amazing, I feel somewhat normal.  I still tire after an hour of anything but I’m grateful to have my mind back.  This is also about the same time the steroids are clearing my system I think.  I cry much less and feel less frustration.  I can meet with friends, work some, play some and appreciate my life despite the nausea and fatigue that remains.

Gratitude and choosing the loss:

Overall, it’s not really that bad, but the recovery period seems to be getting longer each time, and I have no idea how I’ll respond to the next drug, which begins in two and a half weeks. So I have to let go and see what happens.  I hope it’s better, but I will take whatever comes.  I’ll take all of these side effects, as anyone going through chemo does.  I’ll let go of my hair and my breast in trade for my life.  Yes, I’ll take my life, please, and say thank you very much to chemo and my side effects.

chemotreatment3web

 

chemotreatment2web

15 thoughts on “Week 6 – Chemotherapy side effects. Tears, frustration & gratitude”

  1. kimberli, this blog is such a gift. thank you for writing it down to the bones, literally. i hope the process of getting it on the page helps transform it somehow. i am thinking of you often and sending my love. xoxo tg

    1. Tracy, I truly appreciate your comment. It is helping transform the entire process. We’re creatives, it’s what we have to do, there’s no real choice. It IS the process for me. Thinking of you out there on the road as well. Take care of yourself my friend. PS- the pixie fairy you gave me long ago stands proud from her perch on my dresser.

  2. Kim,

    Thank you for such a detailed sharing of your experience. I have never had the chance to hear a personalized version of the process of chemo and how it physically and mentally affects a person’s life. Your story has helped me understand the mindset I must have, as a provider, with patients going through similar experiences. You are such an amazing woman and I have so much respect for you. You are an inspiration and I am so thankful for the fact I became friends with Katy so long ago, which inevitably led to getting to know you. Thank you and you are always in my thoughts.

    1. Amy, thanks for taking the time to write. I read part of your blog. You’re right in the thick of it. I know those feelings. It gets better! The best advice I got was simply to “hang in there.” Seems so simple but time passes regardless and if we can hang in there through those really terrible days we eventually get to a good one. It seems like your come around the same time mine did, maybe day 12. Feels like hell getting there sometimes, I know. I just finished a double mastectomy where they also took the lymph nodes and put in expanders. Still easier than chemo. I’ll be thinking of you as well.

  3. Kimberli:

    What a great blog! It is approx. 6 a.m. EST, and I have been awake for a few hours (it seems like 4 a.m. has become the new 8 a.m.). Oh well, at least I have used my time wisely–on-line Christmas shopping and breast cancer/chemo research.

    Thank you so much for sharing your chemo experience. Although we know there are many others sharing “the chemo experience”, it helps to see it in writing.

    BTW, it is day 15 of Chemo–Round 1 for me. It’s been a real “butt kicker” this round due to some kind of “really evil” cold (antibiotic and Cheratussin) . Okay, we will give Round 1 to Chemo–bring on Round 2.

    Have a blessed Thanksgiving. I’ll give thanks if the turkey tastes like turkey!

    1. Hello Charlotte,
      Oh, I remember that 4 a.m. steroid wakefulness well. I usually felt pretty good during that first hour or two before the nausea set in. Good for you for using it wisely. Christmas shopping no less. Yes,something fun and pretty seems like a good use of clear headed time. You’re almost to round 2 which means one step closer to the end. Good for you. I bought bangles and added a new one for each week of chemo I completed. I now have 8 plus a different rhinestone bracelet for the surgery last week. Six new ones await for the weeks of radiation to come. I hope your turkey tastes like turkey as well. I hated that water tasted bad. Fortunately, just a couple weeks after chemo ended things started tasting normal again. Keep me posted and hang in there! Kimberli

  4. Thank you for your blog, Kimberli. I appreciate you sharing so generously of yourself. My mom is undergoing treatment with Neulasta and has just experienced voice loss. I didn’t notice, did this resolve for you, and how long did it take. It is extremely troubling to her. Thank you in advance for your reply.

    1. Hello, I’m so sorry your mom is having trouble after Neulasta. Yes, my voice cleared up soon after chemo. I hope hers does as well. I’ve never heard of it lasting. That shot would make me ache for a few days afterwards. Not fun but needed. Best wishes to you both!!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.