Round one... in the pink corner Jeannine down 6 pounds...in the red corner Chemo aka mean n nasty...after a 9 day battle...and the winner is by Gods decision... Jeannine cause she's still smiling!;-) I'm pretty beat up but I will be back for round two...hehehe
This was taken 9 days post chemo round one... I am now 12 days out... I far from feel well but better than I had been for sure...
The first 5 days were horrendous... Like nothing I could have ever imagined. I had envisioned the flu or maybe morning sickness...But there was simply no comparison to chemo. I could not lift my head up...the nausea and stomach burning was so intense...then i would have bouts of diarrhea that would come on so suddenly that I could barely make it to the toilet which is literally steps from my bed...then go to constipation but with the urge to go that never leaves...Everything tasted like sale or metal... Plain water I could not tolerate unless is was icy cold...So I begged for ice all day long...Steve went and stocked my fridge with everything cold he could think of...but day one and two were ice water only...Day three tried a popsicle it was too sweet...Steve got me Luigis Lemonade flavor italian ice and I lived on that for two more days.I then could eat some applesauce, a fruit cup and a graham cracker.In the midst of this Tori had either a flare up of her cyclical vomiting or a virus but she used the small bathroom outside of my room round the clock to be sick in throwing up and diarrhea around the clock... I could smell a banana from two rooms away, commercials were horrible so I kept the tv off. Around day 5 I ate a plain hamburger. Not because I was hungry and it tasted terrible but because I needed to eat to live... I had to take tiny bites and swallow quickly but got it down and it stayed down... and for a short while made my stomach feel a little better. So I made myself eat small amounts as often as I could.
Day 8 I had to call the nurse i couldn't take it anymore, I thought maybe they could call me in some meds but after hearing ow my 8 days had gone she said I had to to go in to see doc I was just too sick...nausea and burning stomach out of contral...diarrhea, severe stomach pain and even hemorrhoids which I never had in my life...I spent 3 hours day 7 on the toilet not able to go then getting diarrhea to the point of not being able to get off the toilet...Immodium worked for that then i would fall exhaustively on my bed and wait for the cycle to start over again ...Day 8 started out at 4am with another 4 hours on the toilet...Plain misery... I was too sick to talk or have visitors and literally for the first several days could not speak I was so nauseous so I would point for Steve to get what i needed... He was however back to work so I was on my own for a large part of the day .I literally only got outta bed to go to the bathroom for 8 straight days...People offered help but there was no helping me at that point I needed medical attention...I had to keep chasing anyone that was here outta my room because I did not wan them to know how sick I felt or how painful it was.
When I went in to her office I was down 6 pounds... and clearly looked like crap. She was concerned...talked to me about how I felt... But said this is going to be very hard for you to get through...You have so many other issues... But she prescribed some Gi meds protonix for the burning, and Ativan for the nausea, and sent me over to the chemo room...So there I sat in the exact same chair i had gotten chemo in and had an Iv placed back in my port where they drew a Blood count and then gave me fluids and Kytrel a anti emetic that lasts 12 hours... So Steve and I were there for 1 hour 45 minutes for that to run its course...all of the while me going down the long hall to the bathroom dragging my Iv pole every 15 minutes... Since I was in the first chair I cannot tell you how many poor souls I passed every trip... A few Older people alone there, others with a wife or daughter that had clearly done this so many times. All with the same look on their faces... Misery but clinging to life.
The poor lady across from me had so little weight left to her that her skin was stretched over bone... her husband sat with her and was reading a book...Though she looked so ill until I heard them speak I did not know if she was her husband or son... They started hooking her to a portable thing to wear home for 46 hours and she wanted to know what it was....they told her, you just had this last week dear."...She frowned and said guess its got my brain now too... My heart ached for her...
The things I see there will be with me forever and I can only imagine what Steve thinks as he sees it too ,as well as knows that i am experiencing it and he loves me...
A little farther back a man said to his male nurse "Hey Bob, am I gonna die?" Bob said "I cant tell you that, why do you think you are gonna die?" And the man said "Nah I was just trying to freak you out..."
I came to understand this week that so many want to help as I wish I could do something for the others at this center, a hug , a smile, a kind word... I was at that point early this week, when it is just you and God, thats all you can deal with is living , hanging on, praying... Noone can comfort you, no one can help you...There were times when I just sent Steve away because I didnt want him to see me this way...I kept my door shut and just clung to my sanity. It is you and God alone. It is so important that the people that work at the cancer center are so sweet and wonderful because it does make it easier to know that they want to help you so badly, but they carry a burden because to help you they must hurt you...My nurse Teresa said to me when I told her how nervous I was for the first chemo how badly she wished she had something else to offer , but that these meds will get rid of all of the stuff that is too small for the eye to see, stuff that Cannot be left there...so true...
But I realized that unless I tell you the truth about just how bad it got for me then when I refuse help others don't understand, because there is absolutely no way to get it till you have experienced it. There are others who do not have this reaction...I am not one of the lucky ones. And even with all of my nausea, brain tumor, movement disorder, and 5 months of morning sickness that rendered me bedridden this was far beyond compare...
So, I told Steve I wanted a nurse and he looked kind of hurt and didn't understand why I would want one. I told him because they know what i need when i do not even know what I need ...They know what is normal when I am so afraid of all of these changes in my body...They have SEEN this, they have helped this. I want to keep my dignity and feel human...I do not want my husband cleaning up after me like I am a baby.There are certain things I do not want my husband to have to do for me, thought he would do anything in the world for me. I want to still feel I have some control and keep a little dignity. So, we agreed that when I want him he is here, when I need to send him away he goes to another room and sleeps, we got walkie talkies so I can call him if need be. I Promised when I started this blog that I would hold nothing back and show the reality of what this disease does. I do not want to come across as an alarmist and not everyone has this experience, but this is the blatant truth as to what my experience has been. I have been told after the fact that many others had it really hard through chemo as well, but they didn't want to tell me everything in case it didn't happen to me and because they wanted me to stay positive... I do have a couple friends that were flat out honest with me about how they felt. I am a need to know person.It took one of those honest survivor friends to tell me you are way TOO sick go to the doc for me to do so, because I thought okay this is my normal on chemo.
Just for a little perspective, this is from MedHelp ;
Definition of Cytoxan:
Cytoxan is a chemotherapy drug that is used in combination with other drugs to treat cancer. It is derived from mustard gas, and is an anti-tumor drug.
MUSTARD GAS!!!!
Found this great article on the net while searching for help with side effects: by Denise for Health who had just finished the same chemo courses I am having...I think this is spot on...One of her friends said to her she must be feeling better since she hadn't heard her whine this week?!
"I think we need a different word besides whining. If torture is being inflicted on a POW, if they cry out in pain, do you call it whining? If a hostage is injected with toxic poisons and they complain as they don’t know if they will live or die, do you call it whining. I think not. The pink ribbons have really lessened the battle that goes on by Breast Cancer patients. Pink denotes a comfortable warm and fuzzy feeling, and a ribbon is such a nice thing that you wrap on presents. How can there possibly be a battle to fight with all that pink?
The funny thing is, Adriamycin is a pinkish red. Maybe that is how they came up with the pink campaign. This drug is extremely toxic. My Chemo Nurse told me they do not call it “red death” and “red devil” for nothing. It can only be administered by hand into a vein not an artery. It can cause permanent heart damage or death, not to mention many serious side effects. It is used to treat many forms of cancer, but can only be administered by a specially trained Chemotherapy Nurse in cap, gown and gloves by injection. My dosage was four HUGE tubes each time. It is so toxic you can have it for so many rounds once in a lifetime. And they warn you to flush your toilet not once, but twice or three times with the lid down and to wash your hands for 45 seconds. But right now, it is the best weapon against Breast Cancer, it so often does its job, and we have to tolerate it until something better comes along! For that I am grateful.
We all know a few over-achiever chemotherapy patients who continued to work full time, go to school for their PhD, travel to Europe, run 5Ks, take care of 8 kids, and write a novel while undergoing chemotherapy. They ruin it for the rest of us who are trying to just make it day to day.
But in my case,I am through with Adriamycin Cytoxan. I am grateful that I was able to receive the drug and thankful for all the cancer cells it killed in my body. I have Taxol to contend with for 12 weeks, but for now I am saying goodbye to the following side effects from Adriamycin Cytoxan:
Losing my hair strand by strand, losing my feminity and the ability to feel pretty, dark circles and thinning skin under my eyes, skin that has aged, not sleeping, debilitating mouth sores, horrific and constant nausea, inability to think of any food or watch food commercials on television, inability to move off the couch for a week at a time or more, neuropathy in hands and feet, bleeding hemorrhoids, metal taste in my mouth, extreme and debilitating fatigue, Chemo brain and mental confusion, severe bone and muscle pain, weakness in knees, low blood counts which necessitate having to be a prisoner in your own home, necessity to take steroids and not lose any weight even though you can’t eat, bloody noses, helplessness, loss of independence, severe heart palpitations, frequent urination 5 or 6 times during the night, severe hot flashes every 15 minutes, increased menopausal or chemopausal symptoms, being severely out of breath because of low red blood cells, inability to even walk to the mail box, depression, chronic cough and mucusitis, horrific heartburn, blurry vision, twitching eyes, inability to wear contact lenses, inability to do simple tasks, inability to work and loss of income, loss of identity, inability to care for others, and the list goes on. The effects of chemotherapy last over 2 years in your body once you are through it.
So think before you ever accuse a Cancer Patient of whining. Please do not say that word to them. If you are awaiting Adriamycin Cytoxan, you will get through it. There is light at the end of the tunnel. It will get better. Live one day at a time. And don’t listen to those who tell you to “stay positive” in the midst of it. Do what YOU CAN to survive. Put yourself first. You will be a heroine when you are done. You do not have to be heroic now.
And if you have been through Adriamycin Cytoxan, you know exactly what I mean. No other words need to be spoken. It is in the past, but it will never be forgotten."
So when I found this post I felt vindicated, like I was not the only one that had such a hard time with these drugs... I honestly felt like death was just around the corner, indescribable...
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