XELODA: THE PILL THAT KEEPS ON GIVING!

Joshua 1:9 

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

XELODA:  THE PILL THAT KEEPS ON GIVING!

On Wednesday, November 30 I had an appointment with my Oncologist, Dr. Birgit Arb.  Since the new cancer was found in my liver we discussed my treatment going forward.  She recommended Xeloda and prescribed 4 pills at 500 mg each in the morning and 3 pills of 500 mg each at night (12 hours apart).  My first dose was taken on Wednesday night.  Zeloda is a Chemotherapy drug.  She forewarned me of a common side effect that usually showed itself in about 2 weeks.  She said my feet and hands would start drying out and cracking and to start applying creams, lotions, vaseline, etc. to those areas and sleeping with socks on in an effort to ease the discomfort.

Two days and 5 doses of medicine later the bottoms of my feet began to hurt.  The best way to describe how they felt was as if I was walking on hot asphalt imbedded with glass.  My underside of my hands began burning, too.  It all seemed as though I may be able to bear the pain so I continued taking the medicine.  I had made plans to visit my niece and her family in Bluffton, SC on Tuesday, November 5 and I seemed well enough for the trip so, off I went.  That Tuesday night I took my 13th dose of the medicine and that was the 'tipping' point for me.  Almost at once the skin on my face felt like I had 3rd degree burns.  My hands and feet also started burning.  Inside my nostrils and my mouth were on fire.  My eyelids felt as if they would burst into flames because my eyeballs were so hot.  My chest began to burn.  The tops of my shoulders developed water blisters.  It was just like someone who had radiation poisoning and were burning from the inside out.  There is no way to describe just how much pain I was in.  I shed many a tear over the pain.  I had Ursula, my niece, check my temperature several times and it was alway 98.1.  Inside my mouth began to swell and my tongue, too.  I got worried about my throat possibly closing up and seriously contemplated going to the ER.  I took a few benadryl to help with the swelling as a precaution.  What I really needed was some pain meds.  Since the opioid crises I didn't think the ER would give me anything for pain so I didn't go.  I took a couple of extra strength tylenol and suffered through the night.  The next day I didn't take any of the medicine and knew there was no way I would ever take another one of those pills.  First thing Wednesday morning I called my DR.  She called me back and said to stop the meds and to see her on the 15th and let the medicine get out of my system.  Well, I seriously thought after stopping the meds I would have immediate relief.  NOT!  Things only got worse.

So, Wednesday was a continuation of Tuesday night, my nostrils were raw, my lips looked like raw meat, the bottoms of my hands and feet were as red as fire.  My fingers looked like Vienna Sausages.  My face, chest and shoulders were red and splotchy.  My gums had receded from my teeth and would bleed with the slightest brushing.  My nose began to bleed when I had to put vaseline in it or blow it.  On Thursday, I seemed to be better but then experienced stomach cramping and vomiting.  Later on I began to feel good enough that we made a trip to Walmart for a few things and I quickly ran out of gas.  I had not been able to eat very much at all due to the sore mouth and mangled lips so I had very low energy.  Ursula nursed me through all that and I started feeling better.  Friday, I was better and I limited myself on how much I was walking.  Every step was like walking on sharp glass.  My hands were so bad I could not open a coke bottle, turn the knob on a table lamp, floss my teeth and could barely suffer through holding a toothbrush.  Buttoning my shirt, zipping my pants, pulling on a pair of socks, putting on my shoes and tying my shoes were an effort of sheer will power.  Anything I tried to do with my hands that required the slightest pressure felt as if I were grabbing hold of a tennis ball embedded with razor blades.  Never, ever in my life have I experienced such pain.

On Saturday, Ursula had a yard sale and I tried to help her.  It wasn't much but it was all I could do and of course, Ursula didn't want me to do anything.  By then, my skin had started to peel as if I had been sunburned.  The burning sensation in my skin continued but it started to get better then come back again.  The tip of my middle finger on my left hand had a place on tip that turned bright red.  It looked like a blister under the skin.  To even lightly touch that spot felt like I was slicing it with a razor blade.  On Sunday, was better than the day before but that's not saying much.  My quality of life from the beginning of taking Xeloda was a 10 and quickly went to a ZERO!  Ursula and I did a few home improvement things to her house and took it easy for the most part.

On Monday, the 11th I prepared to go home.  It was another bad day, feet wise.  Ursula had to load the van for me and I headed home.  As I was driving home the fire in my body started getting worse.  I stopped in a rest area for a bathroom break and didn't think I would make it back to the van because of the foot pain.  I also notice my nail beds were turning yellow.  I called the doctor's office and left a message with my concerns and then called Wayne.  He was working and was in the Raleigh area and he arranged for his co-drivers to take him to I 95 at Lumberton so he could drive me the rest of the way home.  I was sooooo happy to see him.  The doctor's office called back and said I just needed to give the medicine time to get out of my system and I would get better.  I really thought she might tell me to go to the ER but she didn't.  After arriving home, Wayne did all the unloading and I parked on the couch.  Walking was still causing excruciating pain and my hands were still painful as well.  Before I went to bed I found a pain med I still had from my gall bladder surgery and took that and it definitely helped with the pain and allowed me to get some much needed sleep.

Today, Tuesday, November 12, I woke up around 3 a.m. and my lips were stuck together and I was thirsty.  I got up and my first steps seemed that my feet were a little bit better.  I had to walk flat footed and hold onto the wall and anything else in my path to keep from losing my balance.  I managed to get my lips parted and drank some water, watched a little tv and started falling asleep on the couch.  Wayne got up and checked on me and I went back to bed soon after.  I was able to get even more sleep and make up some of the deficit.  My feet are better and walking on our thick carpet is somewhat comfortable.  It's the hardwood floors that create pain due to the pressure.  The end of my heels are super tender.  My face and chest are still hot and itchy.  My eyes are itchy, fingertips are numb.  Still can't open a drink bottle or turn on a lamp unless it has a push button.  Gums are getting better so, all in all I can see improvement.  I have no idea what treatment options are still open to me but we will find out on Friday and I will update this blog once we know.

As always, I appreciate all the prayers.  All of this is in God's hands and I have to trust in Him 100%.