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. 

Co-Insurance // Out of Pocket -- DONE!

The bills I got recently (see the last post) were due for payment today.  They were hospital bills for services in July - chemo and the port surgery.  I still don't have the reconciliation from the insurance company for these dates, though the hospital processed the insurance company's paperwork on August 13.  It's September 10. 

So I called Ambetter and immediately got an agent.  I should have realized that was an omen, no long wait time.  It turned out Ambetter was in the middle of a system update so after ten minutes or so the agent - wonderful patient Amir - was able to log me into the system.  And after even more patience with the computer system she was able to confirm that a) the hospitals reconciliations and bills matched what Ambetter sent out and b) with those bills I have met my Co-Insurance or Total Out of Pocket.  That means... no more copays at the Doctors offices, no more co-pays for chemo, and no more co pays PERIOD.  . 

I can't begin to tell you what that means, having the Out of Pocket done.  OK, so I put over $1000 on my account today, but that's the end of the medical bills for 2019.  Now I just have my living expenses (mortgage, board for the horses, food, insurance, car expenses, other pet expenses, electric, water, etc. etc. etc.) to pay each month.  What a relief! 

FINALLY. 

I see the chemo doctor on Thursday and have chemo on Friday.  I'm feeling pretty good, though I still tire quickly especially in high humidity.  The heat is not as bad (only 95F today).  I was able to walk over a mile last Saturday using a lot of benches as usual.  That was  on top of the 3/4 of a mile on Friday. 

Onwards. 

Out of Pocket....

I have no idea why they call it "Out of Pocket" expenses for an insured persons total expenditures in a year with an insurance plan.  It's not coming out of pocket, it's coming out of my bank accounts.  I don't walk around with that much money in my pockets.  I should be about to complete the out of pocket expenses for my insurance this year.  I sure hope so, I can't take many more trips to the mailbox like yesterday. 

It's been raining here for 3 days with off and on hard rains from Tropical Storm Fernand.  The temperatures are down (high of 94 the next three days) but the humidity is thick.  I skipped checking the mail for a few days as a result.  When I looked yesterday,  there were two bills from the hospital totaling over $1000 for treatment not covered by insurance on my July chemo and the port surgery.  I don't have the insurance paperwork showing what they covered and didn't, all I have the hospital bills which aren't as informative.  I do like to compare the two, though I haven't found errors on the hospitals version (yet).  And of course the hospital wants payment next week.  I wait to get the insurance company reports, and I'll call them to see where I am on the out of pocket expense before paying.  I doubt they'll be quick to refund if I go over the out of pocket expenses.  **

I feel good on this new chemo, clear-headed and energetic,  though I haven't been getting out much with the weather. I walked around at the butterfly center today and enjoyed the migrants that were present, and the antics of the Green Jays.  There were several pairs of Olive Sparrows around as well, and migrant Dickcissels and Eastern Kingbirds.  Feeling good on the chemo counts for little, I need to have some positive results. I've been enjoying reading my birthday presents from my Aunt, both the short story anthology Odd Partners and the Arctic legend Two Old Women.  She also sent The Lost Words, one of those fantastic not-just-for-children books.  She has good taste! 

One more week to the next chemo treatment.  Hoping to get out walking and birding more, and hoping the mud recedes! 
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** Please remember this is not a request for money, it's a statement about things that depressed me on that day.  And a reminder about this page with information on how you can help. If and when I have a Go Fund me or other financial need I'll update that page and post it here.  Thanks. 

Peach Fuzz and Ports

With an extra week between treatments with changing drugs last month I find myself growing hair and eyebrows for the first time since I lost them back in the late winter. The peach fuzz on my bald head looks whiter than the hair I lost. It’s expected it will all fall out with the new drug, it may just take more time.  It’s an odd sensation to have hair growing in.

Port installation left me feeling like I'd been kicked by a horse in my upper chest.  This lasted for over three weeks.  I guess there's something to be said for having the surgery before your blood work goes in the tank.  The bruising was impressive but no infection or problems healing, it just seemed slow to me because I was in pain.

What they didn’t tell me about the port before installation included that it’s not used in the clinic for the pre-chemo blood draws.  I did find out it's not used for CT contrast by asking at my last CT. The port is used for chemo or as an inpatient or under nurse supervision. And they don’t tell you it hurts to access, more than most blood draws for me though that varies. The good thing is that it’s 100% success rate for the chemo where nurses were taking 2-4 tries to find a peripheral vein. And this drug requires a port, it's not done in a peripheral vein for safety reasons.

Moral of the story: ask lots of questions.

Hither and Yon

Sorry for the long delay between posts.  I spent two weeks visiting family in Ohio and friends in Ontario in mid-August.  It was great - GREAT - to get out of the hot sticky LRGV and spend time with my brothers, sisters-in-law, niece, cousins, aunt, and friends, also new family dogs.  I felt pretty good but was tired of walking quickly on humid days and after 1/3 of a mile or a mile for the day.  Thanks to the airlines/airports for providing wheelchair assistance or I'd have been unable to face the airports. 

Bigger thanks to brother Paul for the use of his Prius Prime to cruise the 400 miles to Ontario to the Sniders cottage.  The new car and new to me features were fun to use, and the 65 mpg after the 25 electric miles was great.   Next year they'll have AWD, if they have higher clearance too I'll have to check. Birders always want higher clearance - I never hit anything on the highway, but a birding car gets into more interesting roads.  And a huge TY to my hosts in Ontario for feeding me and putting up with me for so long!  Hurry down and bring the cooler weather with you. 

I bought the plane tickets in March with soon to be expiring miles (preserving the rest of the horde with that airline as a bonus).  Turns out I guessed right with the dates fitting between treatments well.  The flights up were a bit rocky with a delayed and then cancelled flight, and the replacement flight delayed.  Fortunately for me they put the wheelchair passengers on the first available flight without my making a request.  It was a stormy day across the USA.  Coming home was easier. 

Since my treatment is dragging on slowly I'm likely going to be posting about it on FB soon, directing those that want to know more here.  I keep finding important people to me that don't know I'm ill or don't know that I finally have a diagnosis.

New drug chemo #2 went well yesterday after the usual upbeat visit with my chemo doc.  The blood work came back about the same including the cancer marker so we'll do another round before a scan to check on progress.  Today I went to the National Butterfly Center since I've been out of town for so long, I'm behind on surveys.  It was a great day to sit by the river, very tranquil (not counting the border patrol boats roaring by, but they were friendly tooting their horn once and waving the rest of the time). 

I'm beat after that.  And the heat is increasing as usual. Hoping we get rain to water the good plants, and happy to miss it and keep the lawn dead so I don't have to mow or weed. 

Good news / bad news

So the first two chemo drugs (used together) gave me relief from some symptoms while bringing on some side effects. The following were helped:

1. Daily afternoon fever (the "FUO" or "Fever of Unknown Origin" diagnosis/description came from this symptom).

2. Recurring flu-like symptoms, I was sick for several days 1-2 times a month. 

3. Lower back pain - off and on severe back pain. 

The side effects I got on the first chemo cocktail:

1. Tinnitus - ringing in the ears - intermittent, mostly in the evenings, daily.

2. Tingling in the fingertips (and toes?) - just started after 6th (last) dose

3. Hair loss, nearly total alopecia.

4.  Chemo brain.  I lose more words, forget what I'm saying, and find focus harder. 

The new drug has different side effects.  I still have an acid stomach (lots of antacids an Pepcid).  I was tired again days 4-5 after treatment, and ran a slight fever.  But yesterday I walked a mile (under duress, lol) and today I don't feel any worse for wear.  Onwards. 

New Drug, Treatment 1 - I want a new drug, one that does what it should...

Please remember I have lots of holes in me and I'm still physically sore and my immunity is suppressed.  If you see me,  please don't try to touch me ANYWHERE.  Thank you. 

I went in on Tuesday (July 30) for minor surgery to have a port installed.  Minor surgery is always a major production at the hospital.  I did my usual 20 questions with the person that called me to confirm the appointment, and learned that although I was told my appointment was at 11, it's really at noon since I need to check in and do lab work first.  I was told I'd be out in 2-3 hours and thought HA!.  Fortunately I was alert enough to get the labs needed for chemo Thursday ready for pick up, and SL was amenable to an extra stop, so the blood work was done together.  There was a LOT of overlap between the tests.  One less needle stick, one less trip to the hospital. 

I arrived at the hospital right at 11 AM thanks to SL, and was quickly paged using one of those restaurant style blinking light and vibrating pagers like they use at busy restaurants.  I went through check in and was pleasantly surprised to be walked back to the labs by the person that checked me in.  It's not that hard to find, but reassuring not to be wandering the hospital corridor searching for it.  The blood test was quick, and back to the second waiting room.  I sat there for 1:15 before being taken back to the outpatient area, same as for the biopsy back in January.  I was given a gown and some warm blankets, and no nurse or doctor said anything to me for 45 minutes, though they were less than 20 feet away at the nurses station.  It's now 2.5 hours since I got there.  I went to the nurses station to see what was going on and was told they were just starting my paperwork.  Here comes the 40 pages of forms....  They took a brief medical history (second time in this place, at least the 10th time at this hospital system....).  The doctor came in and described the procedure to me.  The nurse tells me I won't remember a thing about the procedure because of the Versed.  I cry BS, I remember every minute of the biopsy with Versed.  Another eternity goes by, and I'm finally off to the surgical room at 2:20 PM. 

Here everything goes more smoothly, though I was surprised that my face was covered in a drape, I was allowed a view of the blood pressure machine.  All those big screen TVs, none for me to watch.  You probably don't know but I HATE to have my BP taken, the constriction and all annoys me.  The machine reads my blood pressure three times (it's on a 5 minute cycle) and I tell the nurse the next time it starts I'm taking it off.  The doctors not there, and we're just waiting.  He said he needed a sample of my BP, I said calculate the mean and tell me what it is.  He didn't, but he did pause the dratted machine.  The doc arrives and the machine gets turned back on. 

I'm surprised how physical the procedure is.  I feel the pushing and pulling on my skin and neck, but no pain.  Twenty-five minutes while we talk about tarantula hawks and other stuff, and I'm back to recover in the same waiting area.   They hook me back up to a BP machine that runs every 15 minutes and give me a departure time of 4:20 PM.  Good.  I let my ride home know and change into my clothes.  The nurse records the first BP that comes up, and off she goes.  Someone else needs help more.  No other data is recorded, and I talk to no one else.  At 4:15 I remove the BP cuff, turn the machine off, and remove the other monitors.  No one is here.  A nurse notices and asks what my release time is.  The alarm goes off on the phone, and I say "now".  She laughs.  Another nurse rolls me in a wheelchair up to the front door.  DJ picks me up and drives me home.  I remember less of the ride home than the surgery, but I know we talked birds. 

I wake up a lot at night, every time I roll onto my right side.  I must do that a lot because I woke up a lot.  I felt like I'd been in a car accident on Wednesday, lots of pulled muscles and soreness but nothing too severe.  Acetominophen helps but I have to keep it up all day.  I get through a slow day at work and am happy to put my feet up at home.  I'm grateful I don't have to drive an hour to give more blood for the chemo tests, yay! 

Thursday morning I have less pain from the neck and shoulder.  Chemo is at 9 AM but I have an invite to look for owls at 5 AM, so I'm already in the area and I check in early.  I have to say that accessing the port is not painless, but certainly it's less painful than three blown veins and a successful stick.  The new drug is not allowed to go into an IV, if it leaks it can burn and scar the tissue.  Worst case scenario you can lose a limb. So it's seriously caustic.  It's also at least 5 hours shorter time in the infusion office than the last drugs. 

Here's hoping this one works.  I sleep better Thursday night with some acid reflux into my mouth but it's not bad, wakes me up every time. And I can feel something (hard to say what) in my chest when I roll onto my right side.  Off to go birding a little on Friday morning. 

THANKS to SL and DJ for the rides!  I am not allowed to drive home after the sedation, mild as it is.  I may need rides to and from the hospital in the a month or two, and maybe the airport.  If you can pick me up or drop me off, email me at live4birds@aol.com and I'll check your availability when and if it gets scheduled.  Mostly I am (strongly) encouraged to do things for myself, but thanks everyone for the offers of support!