Monday, April 13, 2015

So....what's it like?

That's a question I have heard a bit.  It has been almost a week since my first chemotherapy treatment and the first thing that comes to mind is WOW!  Seriously???  Truly I think 50 years from now there will be documentaries that talk about the barbaric treatments we used to (hopefully) use on cancer patients. Before my first treatment I had an air of hubris about this whole thing.  While fearful about what was about to happen, I was nowhere near prepared for how I was going to feel.

Tuesday, was not so bad. Ron and I went in to this big room where you can pick an infusion station.  The choices were a little slim as there were a lot of people there, but I found a nice place by a window where a puzzle had been partially assembled. It is kind of creepy to see dozens of people sitting next to an IV that is infusing various concoctions into their systems.   Each person has a different story.  One person got a celebratory confetti throw for it being her last treatment.  One lady, with a bald head, just laid there with her eyes closed, enduring one more treatment.  One man looked like he comes on a regular basis and could practically hook himself up.  Then there is me...  a newbie.  Trying to keep the nervousness back for a few minutes longer.  I settle in to my spot and wait for things to begin.  I feel in good spirits and am smiling and lighthearted, until the nurse comes and starts to open packages...then I started crying. This is so scary.  My good health is about to go away.  I have no idea what to expect and I have no idea when or if I will ever feel good or normal again.  Neither do they. 

The whole process takes about 3 hours.  We came in at about 9:30 and left at about 1:00.  I didn't feel bad.  They give you a whole bunch of medications to help get you through the first day or two. Steroids I took the night before, plus the cocktail infused that day have given me energy.  I pretty much was alert and fine, although slightly nauseated most of the day.  The next day, Wednesday, I woke up feeling pretty good as well.  I asked the nurse if there was any harm in using the artificially induced energy while it lasted and she said to go for it.  So I did.  I cleaned my garage and while I didn't feel great, it was tolerable, until the evening... Then it hit, and I did not feel good at all.  I will spare the ugly details but it was pretty bad.  Heartburn like I have never felt before, nausea, fatigue, heart pounding in my ears,  headache, hunger pangs...while not wanting to eat, body aches.  I think I can best describe the overall feeling as driving on a long, winding road, while hungry, with a tight ponytail in your hair...for a very long time. 

Wednesday (night), Thursday, Friday, and and night.  The medicine they give helps quite a lot, but I am not much of a medicine taker and I have a hard time reminding myself to take something.  There are a bunch medicines on my headboard for various discomforts.  Antacids, pain relievers, laxatives, anti-diarrhea, anti-nausea, anti-psychotics/anxiety, steroids, probiotics, etc.  When I can stand it no more, I begin taking things according to my current misery.  Then I lay back down and try to sleep some more.

By Saturday, I am extremely grumpy.   The thought of food is irritating, but I am so hungry I can hardly stand it.  I wake in the middle of the night extremely hungry and have to think of something I can eat.  I have an aftertaste in my mouth that never goes away and eating new food only makes that worse.  I have found that Campbell's Tomato Soup is a winner for me. It doesn't last long on the stomach, but it tastes and feels good.  Everything is irritating. I mustered the strength to go to a play that Jacob was in on Saturday evening, but everything was so annoying, I had to leave early.  My senses are so on edge.  My pillows irritate my head. I hate my hair...I hate my head!  I hate my bed!  I hate my pillows! I hate food!  I hate my life and I am swearing that this will NOT happen again.  I will die before I let them do this to me again.  I am crying and desperate for relief and can't imagine another 110 days of this torture.

That night, I took a concoction of medicines and went to sleep feeling desperate for relief from my world, and woke up at 7:30 Sunday morning feeling almost normal.  **Sigh** what a relief! On any given day, if I had woken up feeling as I did that morning, I would have considered myself sick and gone back to bed, but this was a marked improvement from the previous days. I even went to church...relieved to get out of my house.  That was actually exhausting, but I was loving just that I was feeling better.  Sunday was pretty good, I even ate a spaghetti dinner (spaghetti works) and watched Monsters U with my family.  By the time I went to bed, I was feeling pretty run down, and woke up with a stomach ache a couple hours later.  I slept on the couch and had crazy dreams and woke up this morning feeling about like I did on Sunday morning...not great, but not totally miserable.

I have a few things I want to do today, and think I may have the energy to do get a softer pillow and a satin pillowcase for starters.  OK...I'm feeling like maybe I can do this.  I am pretty sure I am not on the downhill of this whole thing, but I'll take what I can get.   Tomorrow I have to go in for a heart scan to be sure my heart can handle this treatment, then I will have a week until the next time.  I think I understand why they told me to take the Ativan before my treatments.  It will take that to convince me to do this again...and this is week 1.  One day at time...I guess that's how we'll take things for day at a time.


jan ferguson said...

Awh Robin! I wish with all the research there is these scientists could come up with something better. Jean told me they found no more cancer in you. Why do they still put you through this? Awh girl, hang in there, will keep you in prayers. Love ya!

Catherine and clan (aka catnz) said...

Hi Robin, as I read your experience of getting started on your first chemo it took me back to my first chemo when I cried too. It was the thought of putting something so 'toxic', the nurses had to wear gloves and gown and eye protection, into me and I was letting it happen. It was also knowing that I had given control over to the roulette wheel of side effects - which lucky ones would I experience?

I hope your taste buds have started to come back to normal, and as the time draws closer for the likely hair loss, that are ready for another difficult time. Allow yourself to experience any and all emotions when this happens - many I have known have said it was the hardest day.

You have been in my thoughts as you walk this path. Take care, Catherine