Thursday, January 27, 2022

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.  


Wednesday, January 26, 2022

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.  

Tuesday, December 7, 2021

If I had Twitter

Lots going on.  If I had twitter... I’d have had tweets like … 

That feeling when my oncologists office has the message about “high call volume” but there are 0 callers ahead in the queue, but no one answers …. repeatedly

That feeling when my doctor says "you can call in for a refill" when the last time I called in for a refill three prescriptions were screwed up when I only asked for refills on two....

That feeling when my doctor (who's two and half hours late to the call) says we can skip next months appointment... YAY!  

That feeling when I realize I didn't clarify if he still wanted blood work in a month or not... BOO.  

I got the news that there was no change in the tumors on the latest CT.  Still waiting to have the gene sequencing done on the old biopsy material, which was approved by my insurance company a month ago.  It was probably submitted three months before that... And it may take them three months to send it in.  I better check the expiration date on the permission.  

Friday, November 19, 2021

No Means No

We have finally gotten the word to people that a person saying no to a potential partner means no whether one person would like it to mean something else or not.  So why is the same not true for cancer patients?

For some damn reason people don’t seem to understand that if I say no thank you I mean "no thank you" which usually means let me do it myself.  Actually, as I discovered last week when I was ganged up on by people offering me the same thing at the same time, it means no f**king way.  Ah, frustrations.  

The Rio Grande Valley Birding Festival is a complicated time for me emotionally.  Much like a helicopter mom I'm convinced everything that can go wrong will go wrong at one time or another.  I've gotten better about trusting that trips that head out will return.  It's also tied closely to my cancer.  I got my diagnosis of cancer (but not the type) while at the RGVBF.  Talk about a gut punch.  It seems like I relive it every festival.  And before I told others much about my diagnosis and issues, I had to tell my coleads on the post trip about why I was unable to walk far or fast.  What a change in perspective now, walking is even shorter distances now.  

Well I lived through another fest though I was an emotional wreck by the end of it.  I made sure to spend time in the vaccinated "guide bubble" if you will, spending time chatting with people in the lunch room.  I was uncomfortable with mixing with the unmasked and unknown vaccination status multitudes, so I never made it to the vendor area this year.  And though the office on the north side of the building was assigned to me I couldn't get there, it was just too far to walk.  

That said, I walked farther than normal at the fest and I can feel it even now.  I chased the Social Flycatcher (formerly Anti-social Flycatcher) yesterday and was amazed I was able to get to the bird with only one stop for a rest.  The cooler temps help and so does an ABA bird at the end of the walk!  I was beat when it was time to head home, many thanks to my friend Justin for picking me up and taking me the short distance back to my car.  I can still feel it in my legs today.  But I saw the bird!  It took a village, I'm lucky to have so many friends (even when I'm cranky).  

Thursday, November 11, 2021

The Joys of side effects

Imagine learning English and coming across the term “side effects”. What on earth would you think it meant?  Here’s what it means to me.  

The first drug I took for chemo had a potential side effect of permanent deafness or blindness.  The risk was so low it didn’t even make the printed material.  About two percent of people treated with this drug go deaf and half that go blind. The thought of losing my ability to hear or see birds was depressing. Fortunately I didn’t have those side effects but the main effects were absent as well, no beneficial effects. 

The second drug I took required use of a surgical port as leakage of the drug into muscle could cause the death of the muscle.  I’m glad I wasn’t in the group that made that discovery and lost an arm or was killed by it.  Again no side effects but no beneficial effects   

The third drug was much less memorable.  

So forgive me if I’m not too concerned about the side effects of the current drug because it’s nothing compared to the drugs that I’ve already been on. I have neuropathy in my feet so the first few steps after I get up are interesting because I can’t feel the soles of my feet. The neuropathy must be from one of the first three drugs because it’s not a side effect for the current drugs. It can appear long after the treatment is over and it did that for me. 

I never really had a lot of acne on my face as a teen but the side effects now are making up for it so it only takes a little bit of any kind of outside stress in my face just blows up with pimples. If I’m going to work on being younger that’s not the part of it I want to experience

My hair is growing in pretty well but it’s thinner than it used to be and it’s darker. I now recognize myself when I look in the mirror but it still looks like it’s the wrong color to me. And it’s so short and thin I just can’t get used to it.

I still have nausea at inconvenient times especially in the morning. I had been doing pretty well and then the morning of a pelagic trip I was sick heading out of the house and then sick again at the dock, not a good way to start getting on a boat for 12 hours. I ended up not going because I was worried about making everybody else sick since the forecast was for just a little bit bumpy. I was also worried about popping a blood vessel and having it be 70 miles to the hospital across the open Gulf of Mexico.

Speaking of popping blood vessels, every time I need to sneeze or blow my nose I am likely to pop some capillaries and have blood buildup in my sinuses and make an extravagant display on a Kleenex. I also bleed profusely with every puncture from every native tree thorn. My arms look like I am abused some days. Lots of bruising and lots of small pockets of blood thanks to my blood thinners.

The drugs I am on now are innocuous compared to the first three drugs. First off they are pills so I don’t need to use the surgical port.  The surgical port still needs to be flushed out every six weeks with heparin to stop blood clotting. The last two or three times I’ve been in there they’ve kept me hanging around until closing time for this five or 10 minute procedure. Before the procedure they ask about what are my plans for the port as in why haven't I had it removed yet. I’m not sure why it’s their business. I should tell them to go talk to the Doctor, who of course won’t give them any information. But I’m starting to feel like it’s passive aggressive behavior where they’re letting me sit around from 3 o’clock to 445 before they take care of the port flush.

Lots of stress in my life this week with the Rio Grande Valley Birding Festival.  Lots of frustrations.  Lots of friends.  It is so good to see so many friends ready to support me.  But I don't get enough time to visit with them and when I do it's a noisy room that makes me want to run away.  I don't do indoors and I don't do loud places easily.  

But then there are the birds.  I chased a potential US first for me today, a Social Flycatcher that was sound recorded in Brownsville on a festival trip.  I chased the one in 2005 in Bentsen but was one day late, so it is a most wanted bird.  And I missed this one too, at least for today.  

Friday, September 10, 2021

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.  


Tuesday, August 24, 2021

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.