COVID-19 Negative

Just a reminder that I do use this blog to vent. I don’t necessarily need anyone to read it I just need a place to complain when the world is closing in on me and when DHR is doing its usual less than stellar work.

So good news bad news. The good news is I don’t have COVID-19. The bad news is I’ve had a virus for three weeks now. It started with fever nausea and coughing. I’ve been coughing since the power went out in February and it has kind of come and gone. It’s back and it brought it’s big brother. Recently, I’ve been running a fever in the afternoons and I’m still coughing.   

I’m pretty sure I caught this virus at DHR waiting for nearly an hour for my port flush four weeks ago. As I said before there were unmasked people and people who didn’t know how to wear a mask in the waiting room even though you had to be masked to enter the building.  

Last night I got the results of the Covid test back at 9:00 PM and it was negative. So I hightailed it to DHR (same building but first floor) to have blood drawn for my labs this month since I have a doctors appointment tomorrow. This much smaller waiting room had two different people not wearing masks. The first one was reminded by the registrar that she had to wear a mask. I told the registrar about the second one as I was leaving.  It was nice to see a staff member policing the room. They have already called to confirm tomorrow’s telemedicine call though they tried to get me to change to in person.  As if.  

So now it’s tomorrow and I had the telemedicine call with the doctor.  Not all the blood work made it and they didn’t get the biopsy tested.  They need my signature on something to try again to get the insurance to cover the testing. The assistant said she’d email me the forms and after I carefully read to her “live the number 4 birds” she came back with ok so that’s MAL ….  I gave it to her again but no email and not in my junk mail.  This is the same one that couldn’t get the authorization for the drugs to the pharmacy last month   

Good to have a nice long talk with the Dr even if it started an hour late when I called them to see what the hold up was … and the receptionist then thanked me for taking her call!   Good news though they didn’t ask if I have ever smoked.  I’ve been getting creative on my responses after almost four years of answering it once a month at each office.  

Frustrations. And some Highlights. But mostly frustrations with DHR Oncology.

 My old Doctor #9 left and I was assigned a new Doctor #10.  

Frustrations. 

DHR can’t retain doctors.  

I was not allowed to have this latest appointment on telemedicine.  Unclear who made that decision. Front office said the Doctor, Doctor said the front office.  He has now applied for permission to do telemedicine. He wants more appointments but less blood work. Ok by me only if they are telemedicine. 

I’m not convinced that anyone looks at the blood work until I call. Pretty sure they don’t. 

Front office made arrangements for me to check in from my car and check vitals from my car   Then they called me when they were ready for me   That was nice, I’ve spent as long as 4 hours waiting for an appointment.  

Next day I had a port flush in ten same office. I had nearly an hours wait to check in in a crowded waiting room.  One guy took his mask off to eat lunch and another had his mask hanging from his ear   I don’t even want to count the number of people with noses out of masks.  I had to ask the nurse who did the port flush to fix her mask.  Again the nose was exposed.  Almost asked twice but she saw me doing stink eye and fixed it.  

I got sick.  Was it from the waiting room?  Seems likely.  

Both infusion / port flush and doctors appointment ask every visit if I have ever smoked.  I am finding it more and more insulting as time goes on.  Twice in two days is too many times.   

I still don’t have the promised appointment for the next doctor visit.  They were going to call me.  I won’t hold my breath.  Somehow I need enough warning to get blood work done first, a couple of the labs take more than 24 hours.   Front office follow through is poor.  

One of my prescriptions was held up by needing Dr approval.  Once that happened the drugs were switched from brand name to generic.   The generic is only available in half the dose I was taking (two for more $$ than one of the brand name) so I need 2 pills for the same total weight of medication.  And of course the insurance hasn’t approved it.  

I ran out of that drug on Saturday night.  I called the Drs office Monday morning, Monday evening (after calling morning and evening Weds - Fri last week).  Assistant called again on Tuesday AM to say she had faxed it again.  I called the pharmacy 3 hours later.  No sign of it.  Tuesday night all the phone lines are down.  I can't even leave a message with the answering service.  That drug runs over $13K a month off insurance.  

Highlights  

I liked the new Doctor, and he was mad the front office blamed him for not being able to do telemedicine.  

The CT scan showed some shrinkage.  That’s two positive scans out of a bunch with any good news.  But now facing a week off the meds it sucks.   

I still have the option of going back to Doctor 9, he is much closer to me geographically.  It would be all new paperwork   I hate that thought.  But I am feeling trapped at the Dr 10 office.  I can only contact them by phone and it takes several dropped calls before one is finally answered.  

Lowlights 

Back to calling them 8 AM tomorrow.  If the phone lines are still down I will have to drive up there.  Since I've had fever they won't let me in.  So I'm writing a note.  Trying to be civil.  

Bad week, good month

I started this back on March 15. This is NOT current.  Here's hoping May is a better month.   

So... This past week has been exhausting.  I woke up three days in a row with nausea and vertigo, both were untouched by the antinausea meds I had on hand from chemo.  Each day after three hours or so the nausea eased and I could do what I needed, if anything.  I tried drinking more fluids and other things to try to forestall the nausea but no success.  Friday night I skipped one of my cancer pills - I had been taking both cancer meds at 6 PM - and I took it Saturday morning instead.  I've kept on with the split schedule but I can't believe after three and a half months that taking the drugs together was an issue.  

I've been super low energy since then and trying to shake a cough.  I have no fever or other symptoms just a nagging cough and no energy.  

May 1 

I tried drinking more fluids and more electrolytes in April, and it turned out the electrolytes didn't help but I was indeed dehydrated most mornings.  I now try to drink water at night and all through the day, but a couple glasses in the evening.  

Well I made it to May, got through three "Big Sit" competitions and a dispersed team Big Day for the Great Texas Birding Classic.  I hope to be on 3 of the top 4 Big Sit teams for the Lower Texas Coast area.  I did the dispersed big day from 5 AM to 7 PM though most of my teammates (dispersed across Texas) did much longer days looking for birds.  I drove 325 miles and have no idea how many species I saw, I was trying to find certain species between rain and wind storms.  

March ended with a lot of morning nausea and lethargy, and April started the same way.  It was really the last two weeks of April that saw my energy levels come back.  I still tire easily, have trouble standing for any time, and melt in the heat.  But I have some mental clarity returning and I'm trying to catch up on obligations.  

Stay tuned.  

Long time, no see - February 15-19, 2021

 Hi all,  it’s been a while.  This was my week for the medical test cycle, and also the week that an epic storm knocked Texas on its collective ass.  

Last weekend was cold with overnight lows of 31-36F.   Monday dawned barely with a low of 22F and some freezing rain.  I had finally relocated my CT from the main hospital area to the local area Friday evening, saving me 20 minutes drive each way.  My appointment was for 830 so if I wanted coffee I had to have before 430 am.  I woke up without an alarm at four am to a cold house and no power. Yikes.  I was hungry so I had a granola bar and some water and went back to bed.  I got up after not sleeping and fed the outside birds before calling in to the imaging center.  I was about to give up but they finally answered and said everything was fine with their power and the machine. So I downed the contrast and headed in for my 830 appointment.  

The imaging center was vacant three people including me before 9 am. I know because I sat there for 30 minutes before asking if everything was ok with the machine.   They admitted to having some issues and after checking on it took me back to scan.  It took three tries and two massive bruises before they got the IV started.  It was chilly in the scanning office and that was the first problem with the CT and the blood testing machine.  Both were too cold!  Finally both worked, and the scan took little time after the long lead up. I got home and fed the birds again.  

Tuesday and Wednesday were more of the same. No power. No heat. Feed the birds every couple hours. The stars were a bevy of Orange-crowned Warblers, a single Pine Warbler. Yellow-throated Warbler, Western Tanager (yard bird!), and a host of the usual suspects including Green Jay, Clay-colored Thrush, and two Plain Chachalacas.  

Inside the bigger issue was getting lights for my indoor birds so they would feed.  The house never went below 58F and the cockatiel and zebra finches were fine as far as temperature.  I was able to get some D cells from a friend and that helped a lot with supplementing the meager daylight with a lantern  

Wednesday night at 10 PM the power came on.  I walked to the kitchen, and walked back to the bathroom, turned the lights out, and the power went out again.  It came on again at 11 PM.  And stayed on.  Still, freezing rain so I stayed home and fed the outside birds.  

Thursday I went to do Wednesday’s work, checking out the sites instead of a full survey.  I had placed an order for groceries since I was running short on fruit and bark butter mixing (outside bird food). I had just gotten the groceries at noon when the Dr called for my 2 pm appointment.  Lol!  First time he’s been early.  Anyway, the good news is that the tumors showed minor shrinkage. Still, shrinkage beats growth.  I was expecting bad news as my energy levels have been low - and get lower every time I think about all the dead plants I have to remove.  Anyway, the lethargy could be a side effect of the COVID vaccine (X2) or gray winter weather,  we will see.  I am more cautiously hopeful.  

Good luck to all, one last freezing night tonight and then we warm up. Insectivores are likely taking a serious hit, Purple Martin,  Cave Swallow, Blue-gray Gnatcatcher, and more.  

As far as I know my horses are fine.  I’m going to make a serious effort to see them more often.  I miss the horse hugs. 

Break even

Well, another week of medical tests are behind me.  I celebrated with a trip to Bentsen to see the Ruddy Ground Dove above. Thanks to Roy and Bianca for arranging access for me!  

My CT on Monday showed no change in the tumors, while on Wednesday scales before the port flush showed my weight back up to the highest level I’ve been all year. I’ve been feeling pretty good with the odd morning where I felt nauseous. Still, no increase in tumor size is great news in these COVID times.  

So we will maintain the status quo with hormone blockers and blood thinners and add in another anti-cancer drug.  It still sounds unusual to have the positive results from the current treatment and we are going to double down and try another drug in conjunction while I’m trying to avoid hospital visits.  I’m hoping that it takes less than four calls to find out if and when they sent the prescription in. It’s likely my usual pharmacy can’t handle it but I don’t know where they will send it. 

So Happy Thanksgiving, stay home, and wear a mask. That’s what I’m doing. 

Long slow October

It's been a long slow October.  Not much going on health wise.  The heat here finally broke and the cooler temps have me feeling better.  I did an all day big day as part of the Great Texas Birding Classic dispersed team.  It was fun and frustrating as these things usually are.  Thanks to everyone who helped me out, starting with Marianna and Luciano at the National Butterfly Center and Javier and John at Estero Llano Grande State Park.  

I finally realized they never called me about my appointments for November so I called oncology.  The Doctor appointment was scheduled, but the CT not yet (though I got four letters of approval from the insurance reviewer).  Got that scheduled with their default, which I will likely have to change.   

Lots of work on the Rio Grande Valley Birding Festival and the Spring Chirp though both were cancelled this year.  The RGVBF is going virtual and I'm doing my best to make that happen.  

Successful vet visit a couple weeks ago though I got overheated trying to catch the farm owners horses.  She forgot it was float day.  Juan saved the day and caught the reluctant mares.  I still cringe from seeing the damage my old horse Dickens had happen to his teeth when he fought the speculum, so I make a point to not miss the day.  Dickens is long gone (never forgotten) but Storm and Dreamer have their own issues.  All went well, but I do worry about them more than I used to because of Dickens. Yay, all over but the bill.   

In my mind the tumor is growing.  I hope not!  I had gained weight last port flush so am cutting back on bingeing (or I'm trying to cut back).   

Reprieve!

Well, things are yet to be scheduled but it sounds like as long as everything stays constant I won't have a medical test or appointment (other than the port flush, which hardly seems to count these days) until mid November.  Blood work from a couple weeks ago stays the same, all normal and a very slightly elevated cancer marker (down from way way WAY high).  We went over the results of the ultrasound again, partial occlusion in two blood vessels but no total occlusion, definitely an improvement from the CT scan in early August.  I'm on blood thinners for the long haul.  

We've had some nice breaks in the heat and humidity, earlier than normal and cooler than normal.  It's been a wet fall and that shows no signs of changing.  All in all so far a nice fall.