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.  

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.  

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).  

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.