No visiting reminder

 Hi 

Just a reminder mostly to Family.  Do not turn up on my doorstep.  You not be admitted.   I can’t entertain you.  Go to a nearby hotel and GO HOME.  Ty

Tweety Bird

So my Drs PA who I call tweety bird called to be sure I had the meds that insurance had declined initially. I take double the authorized dose and that’s a lot.  13k a month.   She says she never saw a message about my being sick and said anything over 100.4 I should go to the ER.   And yes my Dr is on vacation this week.  Argh.  100.4 is what I call afternoon… 

They were supposed to come and replace my door lock today but the person didn’t show up for work.  They trying to find someone else to do it.  I can’t walk the back way out of the property it’s too long a hike so I’m stuck.  The ever helpful receptionist / organizer said maybe she could come do it.  We will see.  

Meanwhile PR came over so I wouldn’t be alone with the handyman and has been going great guns on dozens of things that have been annoying me.  I was able to eat half a milk shake and a part of an egg roll so solid food yay.   

Still here still ghosted

 I’ve left messages for my Dr with no reply.  Temp still all over the place but fever not as bad if I don’t fall asleep under the heating pad.   

Thanks to EH for carving out my front lawn and trimming.  

And thanks TK and PR for food and other support.  

I have no interest in food.  I was eating some broccoli cheese soup - forcing myself - and ended up with massive runs.  When you don’t eat many solids you don’t have to go often so it was a surprise.   I’m wondering if my gluten / milk allergy is returning.  

And on top of this I get to try and get my door fixed.  Gee thanks.  

Anyway not dead yet.  

Thirteen minutes

 Wednesday close to 11 Pm I got a call from another Dr in the practice. My blood work was off.  They would try to get me in on Thursday for a transfusion.  Thursday I got 4 spam calls in Spanish about my cars extended warranty.  I changed a spam setting. I then missed two calls from the infusion dept and returned the calls 13 minutes later.  The tech said no guarantees but if I could get type / cross match they might be able to get me in that day (Friday).  So huge thanks to PR for taking me and being the squeaky wheel to get an appointment that afternoon. 

Perfect storm. My phone works fine plugged in but dies without electric.  PR is unfortunately Android.   Couldn’t borrow a charger, doesn’t really matter as I sleep through IVs.  When the tech that called in the morning and couldn’t get me he called my emergency contact.  My brothers conferred and decided a wellness check was needed.  They had the sheriff break into my house.   THIRTEEN MINUTEs.  

I am pissed, I feel violated, I hope this is the end of it but I wonder.  

So the hope is that I will feel better starting tonight and it will last two weeks.   Fingers crossed.  

Go Away

 So I went on a 48 hour pelagic on the MV Fling June 1-3.  I love pelagics but neglected to see that all the cabins were lower deck.  I did something to my hip - reinjuring an old ache that’s been interfering with sleep and walking.  Having to do multiple steep stairways really made me sore   

I definitely caught something from the crowded conditions on the boat.  I made it home and went through a mild cold for a few days.  Then came the wild fluctuations in body temperature aches and shivers.   

There were phone calls that woke me up and phone calls that left me puking for half an hour after.  I have turned my phone off.  I’ve stopped work for now.

So now I still can’t feel my feet which sucks with balance.   I get overheated walking a short distance and puke.  

I talk a little and puke. So mostly my phone is off.  

High Anxiety and Much Ado about nothing …

1/27

So let’s see.  Early December I had to put my mare Dreamer down. It was the hardest thing I had to do in this life but it was also the kindest.  I blew up my car (well not really but I thought it was dead).  And then about ten days ago I was eating a sandwich and broke a tooth. Four dentist appointments and a crown later I think I’m done with that stuff for now.  

For five months I’ve been trying to get the results of genetic testing for immunotherapy. Today while getting my port flush I pushed for information and lo and behold the results were in!  Can I see the Dr next week?  Hell no. But I can see him TOMORROW.  Once again I was told it has to be in person so I will be having a cow if the Dr tells me otherwise.  

I still need to buy a new car, I still need to lose some anxiety that crept up on me today, and I need to stop losing weight.  

1/28 

So yesterday the PA told me I had to see the Doctor in person so I went back to the hospital oncology clinic today.  Fortunately he was pretty much on time and home to home was only 3 hours.  

I was hoping for GOOD news on the test since I had to go in in person, because all I came up with for bad news was we keep doing what we are doing.  Good news we would need to talk about changes, bad news no changes to talk about.  I was wrong.  Mostly the report said they had insufficient material to test.  So no news, the worst option of all.  We will go ahead with the next CT and see how things are going, so no more news for 6 weeks-ish.  

Pain and Loss

This happened about 8 weeks ago. I was too upset to share it. 

I had someone at the recent festival tell me I was lucky to be alive after four years fighting cancer.   Really.  I had a visceral reaction about the four years of pain, terror, nausea, physical limitations, pain, and did I say pain?  I’m not so sure.  I’m not doing this damned treatment to live another month with these issues.  I’m doing the treatment in the (slim) hope to get to the other side, to a life without pain, without nausea, where I can walk and do the things I like to do.  It’s a fantasy, but it’s my fantasy.  

The people that care for my horses recently found my girl in pain with an abscess, and the pain wasn’t relieved when the abscess started draining.  The vet came out and we found that her old age disease was limiting her immune system and that her old founder issues meant that she was in constant pain.  The abscess was the least of her worries.  I had the choice to make, try to save her or put her down.   

Trying to save her was the heart speaking.  She would be in constant pain for a year at least.  Sooner or later the same issues that led to Secretariat being put down would likely necessitate her euthanasia as well.  It would be a life of pain and restrictions and treatments.  And she’s a diva or drama queen when it comes to pain.   The other choice was that I could put her down.  I couldn’t do it that day, mentally I had to process the news.  But I decided to put her down and three days later we did.  

In the intervening three days she was on pain killers and increasingly mobile, but that was like fools gold, there was no improvement. We could actually see the injury getting worse day by day.  It was the right thing for her.  I couldn’t have explained to her why the pain was necessary and what I hoped for in her future.  She wouldn’t understand my hopes for her future.  What I really wanted for her was a life without pain, and there was only one path.  

Good bye Dreamer, I will never forget you.