Patty's epic adventure

  4/28/24 Today is Sunday.  I went to visit my little brother in Idaho last week and had the flight from Hell getting up there.  I was 6 hours late and had to fly to San Francisco on an alternate route.  Geez.  Coming home, I made my flight with 4 minutes to spare.  I hate American Airlines now.  It usually takes bout 12 hours to get there, and that's already a long day - I don't need issues in route.   All of my test results are back and a lot of them are abnormal. I do have some good news, though. There is no evidence of my old cancer. But, that’s where the good news ends. My rheumatoid factor is high, and my anti-nuclear factor is high.  Both of these factors indicate a systemic auto immune rheumatic disease like cancer and inflammatory arthritis. They also indicate systemic sclerosis. It affects the esophagus,  lower G.I. tract, lungs, heart, and kidneys. There is no cure, but they can treat the symptoms. It will affect my esophagea...

  4/15/24 It's Monday.  A poopy one, at that.  Nothing seems to be going right today.  I should just crawl b back in bed and start over.  First of all, my oncologist is retiring.  i won't see her again.  I told her years ago that she wasn't allowed to retire until I died.  She broke the rule.  She set me up with her partner in the same clinic.  Even Susan's old oncologist is retiring.  Obviously, I need younger doctors.  The day went downhill from there.  I'll spare you all the stupid details, so this will be a short post.  They drew 8 vials of blood this morning for my ctDNA test.  It stands for 'circulating tumor'.  It takes 8 days to get those results, so I'll probably hear something while I'm in Idaho next week.  My white count is down to 2.7 and she doesn't know why.  She wants to check my bone marrow, but I convinced her to wait a little while longer.  I'm planning to 'will' the count b...

  4/13/24 My posts are getting farther and farther apart.  I'm not very newsworthy these days, however, I have another ctDNA blood test in 2 days.  It'll take a few days for the results, but this is the big one, so prayers are welcome. We've been camping and traveling a bit, but I'm now going to physical therapy in the pool.  They're trying to help my back/hips since my spinal stimulator was removed.  They don't want to keep giving me steroid injections and I can't stay on the anti-inflammatories much longer.  They are afraid of kidney damage, so I have to go get that tested soon.  I'll probably do that when I get back.  I'm flying to Boise next Thursday to visit my little brother, Kurt.  His heart is giving him trouble, so I figured a visit from me was all he needed...... A couple weeks ago I had just gotten into the PT pool and they had to take me out with the lift chair.  My chest hurt like a buggar.  It was bad.  I knew it ...

  3/5/24 I have a story to tell you today. My lymphedema has been bothering me a bit more than usual lately, so I have been wearing my compression garments. The compression camisole, to be exact. It’s not very comfortable, and it gets hot, so I’m not overly fond of them. They do keep everything scrunched up, though. Several years ago, we went to the Texas state fair. Jessica and I chose to get on a wild ride that spun around like crazy and flips you upside down and every which way. David opted not to go, so he held my purse. We had a wild ride and it was great fun. We both totally screamed at the top of our lungs, and I would do it over and over again if I had the chance. She and I are wonderful roller coaster partners. Anyway, when the ride was over and the bar flipped up, we stepped out of our little cab. At that point, I realized something was amiss. You just know when something doesn’t feel right. I looked down, and sure enough, something went wrong. My left boob had apparently...

  3/4/24 Today is Monday. Something a little bit exciting happened in the past couple of days. First, I found a hair on my head that is obviously on steroids. Just one hair. It is 4 inches longer than the rest of my hair. No, it was never missed in a cut. I have not cut four inches off of my hair since I lost it all. I took about a half inch off to get the chemo ends removed, but that’s it. This is a very special hair, obviously. David told me to cut it. It’s more like ‘The little engine that could’, so I could never do that to this magnificent hair.  Next, I drove at night. About 4 miles. I put my new prescription drops in my eyes prior to that event. I’m supposed to put one drop in each eye 20 to 30 minutes before driving at night. They shrink my pupils so that the light doesn’t hurt them quite so much. That’s the goal, anyway. I paid $80 for this teeny weenie bottle of eyedrops. It contains approximately 1/12 of 1 ounce. I paid $80 after the insurance had already paid. I ha...

 3/1/24 Today is Friday, the first day of March and it's gorgeous outside.  The last few days have been crappy, so the sunshine is very welcome.  I feel so very sorry for the folks in the panhandle, fighting the fire.  It's horrible..  I can't get all those burned animal pictures out of my head. Sorry - on to something else..... I got my MRI results back yesterday.  I had 2 done on my back on Wednesday, so that's a pretty quick turnaround.  I didn't understand a lot of the report, but the parts I did  understand, were troubling.  I was about to hit the internet to find out what the terms meant when the PA from my doctor's office called.  She said she wanted to explain some things on my report so that I wouldn't worry too much.  I have an appointment with the doctor as a follow-up this Wednesday, but she didn't think I should have to wait that long to get some questions answered.  She started explaining some stuff and I was tryi...

  2/27/24 It’s Tuesday. We got home from MD Anderson yesterday evening. My MRI Took forever. They said it would be two hours, but I was there 3 1/2 hours. Ugh. I will get those results with a phone call this Friday afternoon. The MRI of my back is day after tomorrow, but I don’t know when I will get those results.  The procedure on my back last week, took an hour longer than I was told, also. David had quite a wait in the car. Again. I never wanna do that thing again. They said they would give me numbing medicine before they injected my back. The numbing medicine wasn’t that spray on the skin kind. It was a serious injection all by itself. I had nine needles penetrate my back that day. And, every one of them hurt like hell. I don’t know why they don’t give you any pain medicine prior to that procedure, but I will not be doing that again. He had a bit of trouble with the right side, so I got double sticks on that side. I had to lay on my stomach on a hard table. They had me all...