I thought I was dying

It's been so long since I've written, and so much has happened with my cancer.

Well, it turns out that the Taxol did stop working like we thought so I stopped that and had another PET scan in July 2nd. the PET scan showed that my liver lesion has grown quite a bit, as well as some lymph nodes, as well as some new lymph nodes. My bones seemed stable.

I had prayed really hard before the scan that I could just be okay with the results and not get too down.  That really helped, because I didn't feel too discouraged. So Dr. Esplin prescrbed Xeloda to take along with the Piqray I'd been on for a few months.

I started those on a Friday night. The dosage is 3 pills in the morning and 3 at night.
Sunday morning , my birthday, I experienced some severe nausea. When I went to throw up, the pressure in my head was so painful.  That night or the next, (all a blur) I took my pills and I threw them up right away and my head felt unlike anything I had ever experienced before. I started screaming in pain and was on the floor. The next morning was set for a brain MRI cause Esplin thought I could have tumors in my brain. As I was getting ready, I just coughed and my head split again.  There's really no way to describe it. Something like upon breathing after coughing or vomitting, whatever blood flow was cut off and then as it spread to my head again it was like swords all over my head just stabbing me. We hurried and got in the car and I'll be honest, I literally thought I was dying. I was telling Kevin every last thing I could think of because I was sure I wasn't going to make it.  They gave me a Valium which helped a bit just because it made my muscles relax a bit.

Esplin called me a few hours later and said the scan was clear. He didn't know what could be the cause as he's never seen this with my medications. When the severe symptoms subsided a bit, I felt a bit better, but my head still ached so badly with every heart beat.

In the meantime I stopped taking my new chemo pill Xeloda. Wednesday was okay as I didn't feel nauseous but then Thursday evening  it happened all again. If it was possible that this could be worse, it was. Kevin called 911 and it took forever for the ambulance to arrive.
I made Kevin send the girls to our good friends, the Smith's, because I didn't want to scare the girls with an ambulance coming, etc.  The EMT's arrived and my vitals were all good, except my blood pressure was high cause I was screaming.  They explained some thing about taking me in the ambulance and Covid....(I don't have any idea what they meant,) but Kevin took me to the ER.

They immediately gave me morphine, didn't help, more and more and more and finally it started helping a bit (I forgot to mention that the pain killers I had at home weren't even touching the pain)
So I had a CT scan, may blood tests and even a spinal tap. All of them came back clear.  I couldn't go home because my oxygen levels were too low because of the morphine.  Finally the ER doc gave me a cranial nerve block. It was awesome, they sent us home which was 6:00 in the morning at that point and we slept. By 11 the block had worn off and the pain was back.  So I was in bed for the weekend with pain killers, etc. 
Monday, I was able to talk to Esplin again and he ha done some research and found a few cases of people on Piqray that had similar symptoms, even after a couuple of months on it.  So at this point he took me off of everything.  I waited and by Thursday, I was able to get up. and although I still have a headache everyday, it's so much better and I can actually do stuff.

In the meantime, he also scheduled an appt. with the radio- oncoloagist this coming Tuesday, about radiating my C7 in my neck because I have a lesion there and we though it may be encroaching on a nerve or something.

So by Friday, he wanted me to start back on Xeloda but start one pill and then gradually get up to a full dose.  So we'll see how it goes. 

Faith is hard

Where to begin?
My tumor markers have been consistently going back up. So Esplin started me on a new chemo pill called Piqray in addition to my weekly infusions.

That same week, I had scans. May 13th. Esplin called me back the same night to tell me that everything was still stable!  I was really surprised!

Had my appointment with him on the 19th.   He explained that the fact the markers were going up meant that even though the scans show I'm stable, the cells are more active. He also mentioned that the cells in the bones go into these pockets in the bones and you can't really see them on scansSo I got my infusion along with my monthly Faslodex shots and my 3 month Lupron shot.  It hit me a lot earlier than usual and I was down for the count.  The next day I'm used to being sick, but this time was worse.  The digestive stuff was more frequent and I ended up with a fever Wednesday night.  It was back down by the morning. Thursday I'm usually ready to get going again, but this time I was still feeling sick.  Digestive issues, headaches, pains all over my body and nauseous. Not to mention that my taste has been worsening the past few weeks.  I couldn't even eat ice cream it was so gross.

By Friday I was pretty much back to my normal, but I'm definitely feeling the effects of two chemos vs. one.  Oh also, my hair has started to fall out again.

I'm frustrated and I am having a hard time thinking I have to stay on Taxol when it doesn't really seem to be helping much anymore.... Yet, if I go off of it, what will I do?

I'm frustrated that I'm over a  year into this and I'm no better than I was. Nothing seems to be working very well and we're checking off the treatments way too fast.

I'm working constantly on Faith in the Savior. Faith that everything will be okay no matter what.  It's hard to let go.  True Faith is hard. So very hard.  Being okay with whatever occurs, knowing it's better than my plan, letting go of control of something that I don't have control of in the first place.  I'm trying to practice it and some days or moments, I do better than others.

“Fighting through darkness and despair and pleading for the light is what opened this dispensation. It is what keeps it going, and it is what will keep you going.”
―Elder Jeffrey R. Holland, Created for Greater Things

“If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived.”
―Elder Jeffrey R. Holland, "The Inconvenient Messiah"