Toxic Positivity / Negating others feelings

Another request here to read my post about things that annoy and trouble me.
https://marybirds.blogspot.com/p/not-helpful-phone-calls-facebook.html

Reminder - I spent last week with IV equipment taped to my chest while undergoing daily chemo.  This was to spare me from extra needle sticks, not to give you a painful place to give me a noogie.  PLEASE DO NOT TOUCH ME, because you can easily hit somewhere that hurts and also because this chemo can completely tank my resistance to disease.  You can infect me and delay my next treatment. 

About Toxic Positivity.   Ruling my feelings inconsequential with platitudes (everything will be all right).   You don't know that and it is very painful to hear that level of superficialness.  You can say "it sucks" or "I'm sorry" and not offend me.  But you can't tell me my feelings are not valid (it is going to be all right) without getting an immediate and very negative reaction from me
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Now about those other annoying questions.

Don't ask how long I'm on chemo.  It's not like jail.  I don't have an end date. 

I'm on chemo.  I'm on chemo until it works, I give up, or I die. 

It's not a polite question to ask how long I'm going to be chemo. I don't have a clue, and my Drs don't either.  It's a constantly shifting timeline, partly it's changing Drs a couple times in the next month.  Mostly it's NONE OF YOUR BUSINESS.   

Monday was another stupid question.  Woman chemo survivor comes over to tell me how everything is going to be all right.  Seriously?  I asked her how she knew better than my Drs!  Just because you or someone you know survived a poor cancer percentage is not transferable to me or others. I tell people right off (including this person) that I'm not there to talk about cancer but that's' what they want to talk about, as though that overrules my saying I'm not there to talk about cancer. 

People.  I rarely say something I don't mean. 

Ugh.  Today I have a bit of a sore throat that doesn't seem to be cured by Tylenol.  I was up in the night having over eaten at the holiday event yesterday / Monday.  My system wasn't ready for it.  Still isn't.  But I'm catching up on RGVBF stuff (still fun) and work tasks, but will likely not cook at all for Turkey Day.  Too much rich food!  I'm working my way through some homemade butternut squash soup, hoping that helps with yesterdays excesses. 

More birds. 

El Cielo / Gomez Farias

With the support of my friends and co-leaders Rene Valdes, Eric Martinez, and Jorge Montejo I had a great time going back to El Cielo.  The weather didn't cooperate with another  massive norther blowing in on Monday night, and the rain lingering and pounding on Wednesday night before our trip to Alta Cima on Thursday putting a damper on the birds. 

The long bus ride on the way down seemed even longer on the way back after we traded our bus with working AC and toilet (but defective charging ports and WiFi) for a bus with working charging ports but no AC or toilet (and still no WiFi).  I wish I knew which of the participants complained so I could thank them for the ride back to the border. 

We had a truly diverse crowd with us, from non-birders with no binoculars to birders who had been to El Cielo before,  from people who used canes to walk to able bodied, and more.  The way down we had a three-ring circus changing from a US bus to taxis to a Mexican bus.  It was worse on the way back, as we did the first exchange in an "interesting" area of Reynosa and then sat in the taxis for what seemed like forever.  I got home after 11 and was in bed by midnight.  Yuck. 

But all this has little on the trepidation I feel with guiding in the morning tomorrow and treatment starting tomorrow afternoon.  This treatment is every day for five days, a new schedule apparently designed to burn my time.  And there were some issues with the house when I got home but I think I've got them resolved (ha!). 

Continued. 

It was a busy week with continuing plumbing issues (and a great new plumber), guiding one day (had to reassign the second due to the plumbing), work on Wednesday, and chemo EVERY f*ing day.  I didn't have the option on Monday to leave the needle in, and the painful needle stick on Tuesday (back in the same small port as Monday) led me to try leaving the needle in on Tuesday at the nurses suggestion.  I didn't sleep well (maybe too much steroids combining post-treatment steroids with pre-treatment steroids) and the apparatus taped to me to protect the needle woke me up more than a few times. I still struggle sleeping on my left side but it did help speed the process and reduce the pain to leave the needle in the port.  I made it all the way to Friday that way. 

Friday I had a meeting in Harlingen and stopped to see Rick and May for a lavish lunch (with fresh avocado!) before heading in to the hospital for the last chemo.  I went looking for Huck's goatsucker afterwards and realized how tired I was as I looked for it.  Nothing medical on next week, but the week after is chock a block again with meeting Dr. 8 (no idea yet, a temporary replacing my chemo doc), blood draws (this chemo can whack blood counts), and more.  Yuck. 

Trying to catch up on work, eBirding for the festival, TBRC reviews (fun stuff!) paying and reimbursing the guides, and stuff around the house.  Oh, and birding.  Always birding.  Good to have friends returning for the winter season, and cooler temps! 

RGVBF emotions

The Rio Grande Valley Birding Festival is always a blur for me.  The time goes too quickly and I have too many old friends to talk to and new friends to make.  I did my best to stop and talk to everyone I could this time.  I had so much help with my usual tasks of running the leaders and field trips that it was a cakewalk for me physically. 

Today was an emotional roller coaster. Someone that hasn't spoken to me in almost three years but used to speak to me frequently came over and asked how I am doing.  Evidently a mutual human I saw on Wednesday told them I was nearly bald and they had nose trouble and wanted to know more. My issue?  I was leading a group.  Why in the *uck would you walk up to a chemo / cancer patient and ask how they are doing in front of 20 people?  Were they intentionally trying to make me emotional, or get a knee-jerk response of "how do you THINK I'm doing?  I'm dying one day at a time - just like you.  Only I'll die a hell of a lot sooner".  I'm still upset.  I did not handle it well.  But the field trip was awesome. Incidently my  response was an admittedly testy "we're not talking about that now".  I've said that to several people at the festival.  People I've never met before ask the most invasive questions.  No, they don't get answers. 

Speaking of awesome field trips, the only other field trip I led was with my friend Laura Paulson.  We did a tram tour of beautiful Estero Llano Grande State Park with the one and only John Yochum, park naturalist.  It was a great day, even if the winds were blowing NW at 20.  That was Friday. 

So the fest ends tonight, and I continue birding for a few day with my friends Rene, Eric, and Jorge.  It's going to be a blast.  I just hope I'm physically up for it.  I've pulled something in my gut again and am in pain.  Those guys will make it as easy on me as possible.  And I will do my best to enjoy every minute of it.  

Adios to Doctor Seven

I spent last week in California chasing introduced exotics, wandering godwits, and doing a ride-along on Debi Shearwaters' last pelagic.  It was great to be wandering around the coast, visiting L&SP and T&CU, and getting back on the water for one more pelagic. 

The boat trip was a bit rough going into a head sea in the morning, but calm in the afternoon as we sheltered in Monterey Bay while the wind blew.  Friendly Humpbacks were feeding all around the boat as we sat in neutral in the bay, coming far too close to the boat (not the reverse of course).  A mass of California sea lions were feeding in a dense pack and charged at the boat as well, the sights sounds and smells were amazing! The bird highlight was the Brown Booby that made a couple of passes over the boat.  Both the Hudsonian Godwit and the Bar-tailed Godwit put on a show in San Mateo Co. for our birding party on Monday.  It was great to visit with the mass of leaders on board and to visit with my friend Captain Tinker.  And I've never been on a boat trip that started with a champagne toast and ended with a mimosa on the bridge. 

So back home, tired and replete after the best meal of the trip on Monday - artichoke soup and a calamari steak sandwich.  The green chili soup was pretty awesome too.  And I had leftovers for dinner.  The flight was uneventful, and it is good to be back home. 

Yesterday I went to see Doctor 7, the chemo doc, and get the biopsy results.  Short answer is I'm not a candidate for immunotherapy, it's much better to not waste time on treatments that aren't likely to work.  There will be more testing of the specimen for other weaknesses that we may be able to exploit but are not yet FDA approved treatments. 

The bittersweet news is that it was my last scheduled appointment with Doctor 7, who has been a fantastic doctor for me.  It's a damn shame we are losing her in the LRGV.  The current medical miasma of permissions and huge patient volumes had something to do with her leaving, and the rest is the valley itself.  We're pretty incomprehensible to outsiders at times.  I found out that she owns a horse and rides jumpers.  It's so unlike me not to talk pets earlier in the doctor/patient relationship!

Anyway we've decided on a plan and a way forward, starting with a short delay.  We'll start treatment soon.  But with the cancellation of Friday's treatment time slot I need a port flush.  This damn port that was recommended from the beginning of my chemo has been used exactly three times for treatments and needs to be flushed every six weeks when not in use.  It's not used for blood draws, IVs for CTs or minor outpatient procedures or other things. I am not a fan, I'm sorry I got it.  It's annoying every time I roll over at night, with tightness in a weird place.  And it doesn't help that the treatment that required it had no response.  It hurts every bit as much as a needle stick (or more?) but at least they find the vein every time.  The hazard for infection is such that I have to wear a mask when they access the port.  It's quite a production. 

So I have an appointment with Doctor 8, and I don't know who that will be yet.  I've decided to stay in the office, but I don't have a say - yet - about who I will see next.  I have an appointment for a day and time but no name.  Very weird.  Given that Doctor 7 and I have made a plan forward there's no changes until we do some treatments, so if I don't like the lottery winning doctor I can potentially switch before decisions or choices need to be made. 

Biopsy Take Two!

Note to readers:  while I post these blogs to keep you informed, I am mostly posting this one to VENT my FRUSTRATION. It makes me happier.  It's therapeutic for me to post it. 

So the first part of the path forward was a biopsy to test the tumor for genetic weaknesses that could be exploited by immunotherapy.  There are advantages to immunotherapy in the reduced side effects and the better chance for success than chemo (but recognize all chances are reduced after the first choice chemo drugs).  My biopsy was originally scheduled for next week, but for once I scored a cancellation, and my good friend HH was willing to run me to the hospital and back.  So Thursday it was. 

As usual before almost any procedure I didn't sleep well.  The bad news is that I woke up at 230 AM wide awake.  The good news is that I was allowed to eat until 3 AM and then had to be fasting - nothing to drink or eat for six hours before the appointment.  They say it's for six hours before the procedure, but they're so slow to process people that's a joke.  Anyway, I had a very early breakfast or a very late snack and went back to sleep. 

I went in early since I was filling a cancellation and hadn't preregistered or gotten the pre-procedure blood work done.  Both took very little time and I was back waiting to go to the outpatient clinic.  After half an hour (record speed) a nurses aide took me back.  She loaded me up with two hot blankets (thick sheets) and a tiny apron and told me to strip to my panties, put on the apron, and wait.  I asked her if it was going to be two hours or not in the 65F room (I'm being generous here) with a towel and two thin cotton sheets.  She said it could be two hours, she didn't know.  No surprise there. 

Since the last two times I was there they grossly mis-stated the time I could expect to be released I didn't bother to ask for an estimate.  Good thing.  Before he dropped me off, I told HH that I'd text him when they thought they would take me down the hall to the CT and then he'd have two hours before they'd release me, give or take.

Being a rebel I kept my elastic waistband pants on.  I've worn them for the last 6 CTs - no metal in them anywhere.  After an hour a nurse backed into my cubicle, got some Purell from the wall dispenser in my cubicle, and left - all without making eye contact or acknowledging my presence.  That's the first nurse I had seen.  Finally a nurse came in and efficiently did the paperwork and signatures.  I was pleased to see that the former 20 page stack was reduced to two plus signature pages and discharge forms.  She said I was next in line.  The Doctor stuck his nose in, and I was pleased to recognize the same Doctor that did the first biopsy back on 1/2/19.  I told him I remembered him and he'd done the first biopsy, was this one going to be the same?  He said yes.  I knew my chemo Doctor had left the choice of site up to him.  He wanted to know why we were doing the biopsy and I said testing for markers yada yada and he said oh, nothing in the orders about that.  So there he goes back to the chemo Doctor office for modified orders.  At least that didn't take long.  I shudder to think I'd have had the biopsy and they would have confirmed cancer type (already known) if he hadn't asked. 

After an hour and a half total wait a nurse pushed an ultrasound into my cubicle and did a great job of introducing himself.  He was here to start the IV.  I checked the tags and he was an RN, but another nurse was shadowing him closely.  I should have been more suspicious.  He greased up my left arm from wrist to elbow and traced every vein.  That only took 15 minutes.  Still no IV.   I suggested that he try the right if he didn't like the left.  I had already had a blood draw on the right, but there are several veins I've been stuck in in the past.  Plenty of room left.  I've had over a dozen IVs this year, and collectively they haven't taken as long as this one had already.  Another ten minutes and he started fishing for the vein with a needle.  Turns out he's in training on using the ultrasound to start an IV.  I am a minute from throwing them out to get someone without an ultrasound to start the IV when he hits the vein.  About f*ing time.  Never again.  Let's see.  I specified no photos and no observers but next time no certified RNs that are in training or anyone in training of any sort.  My patience was shot.  It's now 2 hours since they brought me back. 

He's barely done starting the IV when they wheel me down the hall to the CT and tell me to get on my back on the CT bed.  I said the biopsy is prone not supine.  They said supine.  I said errr.... not if he's doing the perirenal tumor.  They call the Doctor.  Prone.  The staff looks at each other and says "two points for the patient".  Ok, I go belly down on the hard cold bed.  At least there's a pillow. 

The team is efficient and professional, introducing themselves (always appreciated) and the Doctor comes down and takes a bunch of samples (I told him there would be no third biopsy, take lots).  Sticking plaster on the back and they wheel me back to the outpatient suite.  This is the one thing that is efficiently conducted but never seemed rushed. 

So back at the outpatient suite the nurse says I can eat in an hour.  I laugh out loud.  WTF, it's waking sedation, I'm not feeling it and I can swallow.  I said I wouldn't wait that long, I brought food.  I asked for coffee.  There is none, but she quickly brought me lunch, a turkey sandwich on white bread (dry), a little thing of apple juice and another of sugar free jello.  There's also a bottle of water, the first I've drunk in 9 hours.  And I am thirsty.  The nurse leaves and I get dressed, taking off the blood pressure cuff and disconnecting the heart rate monitor to do so.  I'm dressed and have eaten when the nurse returns.  I reconnected the heart rate but not the BP cuff.  I HATE having my blood pressure taken.  She needs one more reading before releasing me so she reapplies it.   The cuff goes off and fills, she gets the reading, and then it goes off again because I take it off.  This patient has HAD IT.   I walk up and down the hall a couple times to clear my head and it's time to go.  HH is there, and takes me home.  The stress of the whole thing has me mentally fried. 

The chemo Doctor wanted one more test as an outpatient to clarify something on the CT.  This was an afterthought, "deductible's paid, let's check it out".  They scheduled it for a day I couldn't make it so I moved it to the next available day, two weeks off.  The instructions I'm given by the scheduler contradict what my chemo Doctor said to expect, so I question the instructions. I get an answer with very different expectations for the procedure, and question that.  They decide that the radiologist will talk to my chemo Doctor and someone will let me know.  So far no one has called.  Currently this is scheduled after my next chemo Doctor visit.  I'm not a happy camper. Expect 50 questions instead of 20!  I'm not anxious to return to the outpatient surgery.  There better be more clarity than there was the last doctor visit or we won't be doing that test regardless of which Doctor's expectations are planned. 

ST-RIKE TWO!

Another CT scan, even worse results.  Not only did the tumor wrapped around my Inferior Vena Cava (IVC) not shrink, it actually grew.  The big tumor that doesn't matter either shrunk or grew, depending on which CT you compare it to, but it doesn't matter.  That tumor could be removed surgically any time. The smaller tumor that was originally lymph nodes is the problem, and it definitely grew.  So that's the end of chemo treatment 2.  No blood test today, no chemo tomorrow, snow day! 

What does that mean?  More tests.  Way WAY back when the chemo doctor first came on in the role of Dr. 7 she had requested my original biopsy from January 2019 be tested for cancer markers.  There wasn't anything left to test, so that means another biopsy now.  They'll test to see if the cancer shows weakness to cancer genetic markers that have an approved  immunotherapy.  If the cancer is susceptible, then we'll do immunotherapy next.  Otherwise, it will be another chemo cocktail.  There's also a (slim but) possible blood clot on the CT, so there will be vein mapping by CT to make sure it's not a blood clot.  If it is a blood clot, they'll put me on blood thinners.  Otherwise, no action.  Good thing the deductible is paid already. 

Regardless, I get three weeks for the tests, a pelagic trip, and the results.  The biopsy results alone will take 7-10 days.  That means no chemo for another three weeks - on top of three weeks since the last treatment.  I'm curious how much better I'll feel - or not - with another three weeks off treatment.

Cancer sucks. 

That first week is a killer...

The usual pattern, chemo doc visit on 9/13 and chemo on 9/14.  Bad news at the doctor that she may be leaving the area.  I really, really like both my cancer doctors, and am especially uplifted by my chemo doc (AKA Dr. #7).  So I need to find a new chemo doctor, who can work with my surgeon (Dr. #6) and keep treatment moving forward. 

Chemo was quick, I chose to schedule the appointment in the afternoon since this is the best I am feeling each cycle.  Why ruin a good morning with chemo, now that it's only 2-2.5 hours instead of 6-8 hours let's delay it to the afternoon.  Made sense at the time, and then I didn't get my ass moving so I didn't do much in the morning anyway.  Well, shit happens.  Maybe next round I'll use that time.  I did also want the morning available so I could work if the opportunity arose. 

The first week after chemo isn't as tiring physically as the first drugs, but it's mentally draining.  I end up depressed and down on days 3-4.  I try to manage the depression and the anxiety with planning, mostly it works OK but I'm still not as positive as I am later in the cycle.  And it helps that I'm feeling better later in the cycle, but that doesn't seem to be all of it.  I have been sleeping well in general without the 20 hour sleep day of the first drugs. 

My anxiety is the worst after I've had a scan and don't have the results, so I moved my next scan from Friday to Monday morning.  There should still be time to get results, but I'm actually less concerned about the results and appointment than the anxiety if I have the test on Friday. Last time we did that the weekend was a black hole of depression. 

I haven't made one pelagic this year.  It didn't help that there was only one Texas pelagic, and it was the day after chemo, 16 hours, and I was still unsteady on my legs with the neuropathy.  Oh, and seriously troubled by heat.  At least I didn't miss any megas, but I don't begrudge them the rarities!  I have booked flights - but may still bail - for Debi Shearwater's last pelagic trip. I would love to get out on Monterey Bay. 

Thanks to all who have reached out to me! 

Onwards.