Tuesday, July 30, 2013

After the Cut - Chemo treatment Reaction

Learning to Cope Here is my side effects diary!

Day 1 Chemo Day Cycle 2 - tired mainly from a seven hour doctor's office visit and steroid pre chemo dosage the day before. Very teary and emotional from the lack of sleep and side effect of my sleeping pill. I think I had five hours, up at around 3 am. Some of this sleeplessness is the steroid, some is a normal pattern for me.

Day 2 Chemo Cycle 2 - extremely nervous, had company in my home, invited my neighbor in for a mani.  Worked hard, I forgot my appointment to go get Neulasta because I had such memory problem. I totally blamed my doctor, he have me the chemobrain and did not call and remind me of my appointment. I need an assistant. I may be putting out a want ad.  Haha. No joke.

Day 3, slept better was exhausted. Got about six hours. Went to get Neulasta shot. Feeling very emotional and shaky. Called Mom crying. Have not done that for YEARS.  I felt better, it was just emotions. Feel tired, weak, not hungry, anorexic. Hands are beginning to feel dry and some tingling in my toes. Tonight my throat is sore, and my tongue is beginning to swell up. My mouth is becoming dry, so food is harder to eat. Soup is good this day for dinner therefore. My feet are tripping me up a bit and I am feeling some weird tingling at times in my toes. This is what I believe is called peripheral neuropathy, where your smaller nerves are so delicate they become injured in your fingers and toes from the chemotherapy drug called Taxotere. They may recover or not.

Day 4 This was the hardest day for me yet.  I didn't get much sleep. maybe five hours. I had trouble sleeping the days surrounding the "hard chemo" for mainly one reason, the steroid medication Dexamethazone. It makes you feel like you had five cups of espresso. So I am not resting.  My heart began palpitating this week, it is very pronounced, during inactivity, during times of emotional stress. It feels like my heart is straining a little at times.

Day 5 The worst day of my life in the last decade. I had major problems with one of the medications, which ironically, is not even strictly needed.  The medication is a steroid called Dexamethazone. It is administered to prevent swelling from the chemotherapy. I discussed the side effect of agitation with my doc. I am bipolar 2. I do not willingly trigger mania with medications any more.  We talked, and he agreed to halve the dosage.  Thank you Dr.!!! I shudder, shudder to think of what state I would have been in had the dosage been doubled.  The suffering of a manic episode triggered by the steroids, combined with the chemotherapy fatigue, and lack of sleep have been a triple whammy.  But you know what? I am five days in now.

I trust my wonderful doctor, Dr. Wayne Keiser, so much that I made us both very uncomfortable when I said " I Love You" after I couldn't contain myself after we hugged at my visit this week. Well he is saving my life and feels my boobies every three weeks, I haz feelz!

So you can see how my mind is wandering. If you follow my twitter, you may see I suffer bouts of insomnia, which is a problem for me for reasons I explained in a previous post, here.  The combination of lack of sleep and a feeling that I am on a pot of espresso constantly is my issue. To combat the extreme energy, I take valium. It seems to work to calm me very well, and so I take as needed. Problem with that is guess what? It has side effects too!  But this one is not bad.  It makes me sad.  I cry over anything when I take a valium.  But crying is good sometimes and so this week, I have cried quite a bit, just really due to side effects.  Yesterday, the worst day:

Timeline as I can remember:
Awoke at 2 or 3 am.
Stayed up on twitter meeting fabulous people who are either insomniac or another time zone.
Meeting and enjoying myself with them so much I never got back to sleep
My hubs got up, normal, I iron his stuff, he goes to work at 8
I then call my doctor, because I am in distress and leave a message with the help line.
I fall asleep on the bed for a couple hours of blessed sleep and I am awakened by the voice of the advice nurse on the answering machine saying goodbye call me directly blah more questions blah
Call, ask for her directly, got message again. uHG. Left message. Wait Wait Wait. 11 am.
I called and insisted to talk to the nurse NOW. I AM UPSET and my heart is palpitating. It is growing very tired because I can not lie down and rest. I need someone to hold me down unless I take a cocktail of prescription, alternative and herbal therapies plus sleepytime tea.  Even if I fall asleep after the cocktail, I awake four hours later.  This is just like the pattern of a manic episode.

 I know doctors do not know it all, FACT. My doctor, the dear, had no idea, nor any of the nurses that Herceptin ruins fingernails and toenails! I will show you through the treatment, and already now, how it is starting to affect my hands. Read for yourself this forum of generous sisters as a resource of anecdotal information from women who experience the effects themselves.  I have not joined however, I will use my own website to document my story instead. Plus I read their terms of service. I am doing that more lately!

Ok here is a big point for you. Medication. Advertising makes medicine sound great! Listen to the glowing types of things I have been told about the medicine Herceptin. Herceptin is not chemo, it is a "targeted" therapy. This is new in the last dozen or so years.

"Oh it is wonderful"
"Fifty percent improvement in survival rate"
"Biggest development in breast cancer treatment in years"

Sounds wonderful!  Pretty much is compared to Chemo.  But what I did not expect was that my fingernails could

crack vertically
lift up from the nail bed
discolor to brown
fall off
worse even still.... on the toes.

The cuticles dry, crack, can split, bleed and become infected.  WTH.

I got "triple positive" aggressive stage one breast cancer. Sent me reeling for two months. Lumpectomy and then another surgery to put a bionic device in my chest to feed the chemo into the vein near my heart. The port surgery was worse for me by the way.  I will undergo another surgery to have the port out later. Dealing with it.

I have to have chemo because I have aggressive HER2 positive cancer. Handling it.

My crown of platinum streaked threads, that took me 47 years to love, was shorn with not much fanfare, well a bit, I vined it on twitter.

I was able to accept all of this because at each stage I told myself, well I still have my nails and my blog to keep me happy.  But then I began to learn about the effects of Herceptin on nails.  This hit me hard, I have to lose that too?  After a bit of a pity party, and a think, I got a great idea. I am going to find a hand model or five who want some pretty nails done in exchange for allowing me the rights to take pictures of them and show my work on my blog! I have already done my first amateur client's nails!  No pics, she had to run, but she called me and thanked me so much!

She went from a nail biter who hides her nails to a lady who is flashing her digits like a diva. You know how I mean, think Rihanna or Amy Winehouse.

  I have no vanity left, I bare everything, well almost to you now. I am a lady after all! I am not a vain person any more. I have sympathy for other women who have to suffer treatments and also the loss of their femininity and have parts of their essential female ness cut out.

My heart really goes out to my sisters who have to do what I am doing while also working a job or to raise kids and care for them. I could not do it all! I really do not know how you could get this chemo regimen and work. I know I can not except on my own schedule when I have the energy. Thank goodness I have the luxury of working for my husband as his domestic goddess. I wish for every woman to have as much or more support than I. Because now I know how much it is needed and appreciated. Every little 'elps, as the British store Tesco's likes to say.

Day 5 post chemo Cycle 2 This was a very bad day because of a lack of sleep. Also I am having trouble eating now. My tongue is swollen and my mouth is dry and rough. I have been sleeping two different times per night. First time I normal bed time until 3am, then I awake and return to bed at 8 am. I am very agitated, upset and irritable. I feel extremely confused, the only thing I am good at  now is to focus on writing.  My memory is so bad, I thought I had a bad memory before. Now I am wandering around wondering why today, all upset because I either can't find or remember something.

Day 8 I can barely type, walk, eat, and I need a cane. I have aged thirty years in one week. Bhy====== Butsgekk  Nutshell.  That gobbledegook?  UI an a wruterm tgus us wgat cines ihgt
translated with agony and tears I dont remember what I wan=s == tosag ==U \I  can almost literallg not type this. Each letter toi=] ]==I cant tomorroa I will try I cant I am dayng

Here you can witness my mind becoming mush in the evidence above.  I stopped this diary when I could no longer literally type the letter t.  The letter t came out as d. EVERY TIME.

What happened to me? Well, it was not nice. Not pretty. It was traumatic. It was a psychotic reaction to steroid medications which aggravated my bipolar disorder. I literally became another person, whom I neither know nor remember very well, for two weeks.

I will answer any question you have on this subject privately if you want or need an answer or are curious. I will share that it was a trauma, to me, my husband, my dog, and my family, doctors, and even neighbors and friends.  I will share my psychotic medication reaction story with you after the cut.

I knew I became ill with a neurological problem on day 8, you can see how I typed. I could not type.  I could not do anything but squirm out of my skin all day and night. I had consumed a perfect heart killing cocktail for myself.  The combination of drugs and my bipolar was a certain recipe for disaster.

Herceptin causes Heart Failure in ~8% of users. It weakens the heart's pumping ability. Maybe reversible.

Corticosteroids like Dexamethazone can cause a psychotic reaction in some users.  I had asked for half a dose to start, I knew it could be a problem. I begged my doc not to give me anything to aggravate my bipolar disorder.

But, despite only taking half a dose and begging my doctor, I had a severe delayed, life threatening psychotic reaction to steroids which aggravated my underlying bipolar disorder so severely that I had to be chained to a bed with leather four point strap ties, and also hospitalized in a Berkeley hospital for six  days.

I will not tell you what I have seen on the inside yet. The horror of a modern day American mental institution is too much for you to bear at once. One word. ROBONURSE.

I can not go there yet. I will though.  Just giving a quick update on my course of treatment.

My Major problems now.

UNEXPECTED things and realizations I discovered. not just the, you know the usual chemo probs.

I had a bad sore on my tongue. This is common in chemotherapy. It got bad because it went untreated in the mental hospital. They could not be bothered to use a tongue depressor in the loony bin, and I didn't have good nutrition or dental hygiene in there. But they love blood, blood draws, and blood pressures!

I had skin problems on my hands and fingers, very dry skin and flaking and peeling.

I couldn't eat because things tasted nasty or my mouth hurt too much.

I became afraid to eat any food with non organic or toxins, to the point where I lost weight, this is called Orthorexia.

I have lost and gained ten pounds. This was due to my poor nutrition in the hospital, the food was shit. It was alright, but I decided at one point to stop eating much also.  I had a mini hunger strike.  That didn't last long!

Now I need to find another oncologist. I no longer trust my old one. No worries.

My chemo is on hold for now.

I am recovering my strength at  home. I am doing well today.

Chemo is a breeze. Side effects from steroids, however, are nothing to mess around with. And boy did they mess with me.  I am back though.



  1. Thanks for being so out there and honest with your experience :) You're awesome!

    1. You are welcome Arielle! I am like a big science experiment I am sharing with you. Think lab rat! LOL

    2. Thank you for saying I am awesome. You are awesome too!

  2. I wish you lived near me so I could hug you!!! I am very sad to read what you have been going through, no one should have to go through that. :( If you ever need to talk, please feel free to send me a message anytime.
    I know very well that medications are super serious. While the ones I take and have taken are for different reasons, I have had really bad reactions to some as well. I remember vaguely when I was a teenager being on Paxil and for a couple weeks (I can't remember most of it) I was terrified that I was going to die or hurt someone. I remember sobbing in my bed and thank goodness my family was with me. Thank you for sharing your story with us, I know that a lot of people will understand. I wish you the absolute best health and best life!!!!

    1. I also wanted to say that you are not losing your femininity. Breasts, hair, nails, all that is not what makes you a woman. What make you a woman is your mind, and how you are as a person. It is your mindset. You are still 100% woman, and you will always be 100% woman. <3

    2. Thank you very much Ashesela K. You are such a kind sweetheart! I know it is because you have been through tough times that you have such empathy for others who also suffer. It is such a pleasure having you as a visitor to my blog!

      I am sorry you had such a horrifying reaction to medication. I really sympathize with anyone who suffers bad side effects, more than I did even before.

  3. I think you are the bravest woman I've ever met. For you to share your most private moments with us as a bare it all is so amazing. Thank you so much for not glamorizing or covering up the reality of what goes on with ones body during chemo treatments. I send lots of hugs your way. Your friend, Jasmine

    1. Thank you for this very kind comment friend. I am very brave, but I am at the same time terrified and I will admit that to you. I feel that I must share to help myself cope, in the knowledge that some day some other woman will not suffer the horrors I have endured. I am not exaggerating, I really want to prevent any other woman ever from suffering what I experienced, it was so frightening. I really want to do more work here to share my very important story. The things I am sharing are important not only to me, but especially for any other bipolar woman with HER positive (HER2 +) cancer who needs chemotherapy.


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