Here I am again

I know, I'm a bad blogger.  Well, that's the beauty of blogging.  I keep my own hours.

Since I last posted (two months ago {gasp}), I tried to get into a Mayo Clinic clinical trial. After I gave all my info, then I was told that the trial was suspended or closed or something.  That same day, I heard that a pheo friend of mine's husband, who was already in the trial, had a heart attack while on the trial medication.  That freaked me out a bit.  I wasn't as interested then.  But I had to do something.  My catecholamines were getting so high, it was affecting every part of my life.  My anxiety was worse than its ever been, my anger turned into rage, I cried about everything, my relationships were really taking a beating.  And my BP was getting higher and higher.

I went to see my oncologist and he said he could just write me a prescription for this clinical trial drug, Votrient, because it's currently a kidney cancer drug, and he has a few patients on it.  After telling him the story of the heart attack guy, we got a pre-blockage plan going. I was already on a few BP meds, so we started on phenoxybenzamine, a BP drug that is specifically for people like me with blood pressure issues from pheochromocytoma tumors.  The side effects from that drug are stuffy nose and fatigue. Like I wasn't already tired all the time. I started on a 75% dose to see how the toxicity would affect me.  This drug also raises my blood pressure (which I think is why the other guy may have had a heart attack), along with a string of other lovely and odd issues: very tender feet and hands (soles and palms), fatigue (great, more fatigue), sudden onset of nausea and/or headache, rashes, mouth and throat sores, deadening of my taste buds, and other really weird stuff.  The headache thing is tough, because I get migraines.  I've been able to catch them right at the beginning to ward them off, but this stuff doesn't let me do that.  It is literally like someone sticks a knife in my head.  I'm fine, then I'm not.  It's fun.

After a month, my cats (catecholamines) came down by about 60%, and I didn't want to kill anyone nearly as often.  My anxiety has gotten better, but I still struggle.  I'm now taking the full dosage, and a higher dose of the phenoxy.  Keeping my eyes open at all is difficult.  I'm still able to get up early and hang out with Cody, make his breakfast and his lunch, and take him to school.  I'm very thankful for that. But when I get home, I go straight back to bed.  One day, I slept until 12:30.  I'm not a sleep-in person, so it's less that optimal being so sleepy all the time. But it's better than wanting to kill everyone in my sight, so I'll take it.

I still have non-tumor related back issues, due to degenerative disc disease.  It's sounds a lot worse that it is.  The damage from it, anyway.  The pain is debilitating most of the time. I got a full spinal MRI, and the radiologist noted that there were too many tumors to count in my spine. I don't know what I expected from the report, but that wasn't it.  I can get spinal injections up to four times a year, and I've already had two.  I'm saving one for vacation in July, but I think I'm going to have to use the other one soon.  So, my back is the thing that is giving me the most problems right now.  Besides the sleep issue.

So, that's all I have for now.  Thank you my faithful followers.  I see the doctor again in a few weeks, and I imagine we will talk about getting a scan.  Hopefully, I will be a good blogger and write again when I have more news.  This treatment is our last defense at this time, so any prayers you can throw my way will be greatly appreciated.  Specifically, please pray to take cancer out of our lives.

God is love.

p.s. Goodbye Othilia.  See you soon.