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! 

I Want A New Drug...

A quick reminder that this post is about past events.  Chemo brings ups and downs, with more downs than ups at the time I started this.  If I'm posting this I'm in a much better place now. 

And a reminder about this page that has information about things that cause me stress - or not. Thanks much my friends.   
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Ah.  Black Day(s) in July.  It all started 7/19 when I inadvertently flushed a Common Pauraque from its recently laid nest next to a park bench.  I called the staff to mark the area off limits and moved away until they came, less than 10 minutes later.  When we re-checked the nest, one egg was gone and one was broken, but the nest had the typical 2 eggs in perfect condition and freshly laid when I found it.  That made me feel terrible, even though the choice of nest location - two feet from a bench in the middle of a clearing - was the female Pauraque's choice and not mine, I was the one that flushed her and showed the Green Jays where the nest and eggs were.  It's not the Green Jay's fault, they are likely calcium-limited and seek out eggs and chicks as an important part of their diet, much like their more northern cousins.  But still.  That made me sad. 

I had a CT scan on Monday 7/15.  The results, which I picked up on Monday 7/22 (after a mostly sleepless weekend) showed no change in any of the tumor dimensions, including the critical distance the vena cava is occluded.  I've written before about one of the worst things - a test taken and results unknown.  It erodes my confidence, my happiness, and my tolerance.  These things are in limited supply to start with but with a test outstanding and a long long LONG weekend to sit through until I can get those results I'm down.  There's no other way to put it, here with a purple goose egg on my left arm from the CT tech's blown out vein and achy from lack of sleep.  Not knowing is THE WORST. 

I went in for my pre-chemo appointment and my Chemo Doctor (I hear some of you are confused by the numbering, she's awesome Doctor 7) had options lined up for me to discuss.  She and the Surgeon (Doctor 6) had discussed my case and agreed there was no reason to continue on the former drugs.  So we've picked a new one, and are running it by the insurance company and getting all the ducks in a row to reschedule chemo with the new drug.  We have a plan in place going forward.  I'm not as happy as I would be if I'd had results on the first drug, but I'm ready to be done with that drug.  The good news is the neuropathy (new side effect) and tinnitus (old side effect) are supposed to go away with the end of the old drug regime.  I'm just happy that I didn't lose my hearing - one of the side effects that freaked me out for this drug - for little or no results.  I can't imagine not hearing the birds.  The new drug has scary side effects too, just different ones.  I'll still be bald, but I really don't care about that. 

So it's like a SNOW DAY for me today, no blood test today, no chemo tomorrow, whoop!

Life goes on

I've gotten out birding a few times of late, nothing strenuous but a delightful tour of Estero by jitney thanks to JY, a couple days on the river at the NBC, and a lovely very early migrant adult Zone-tailed Hawk at work near La Joya. I still work in the field one morning a week.  It's not fun work, but it's also not taxing physically.  I got to the Rio Grande Valley Birding Festival meeting yesterday, it was great to see everyone!  I don't see many people now. 

I got a call from the pharmacy company that made the change in the chemo drugs requiring pre-approval.  They got the complaint registered but as I guessed did not get that it was a complaint about communication (actually the lack thereof).  They still seem to think that Doctors should check their website for changes in drug and treatment coverage each day and that they have no responsibility to warn patients or Doctors about changes in approval that they make, even when the treatment codes show them who is using what drugs and how often, at least for chemotherapy.  The good news is I have pre-approval for two more treatments.  Whoopee.  (sarcasm).

I am starting to see more side effects so I'm hoping we get some progress shown on Monday's CT scan.  I was hoping to move one  appointment up but Doctor 6 pushed her appointment back 3 weeks.  I did finally get Doctor 7's office on the phone and they still don't  have all the results, it's been 3 days and it usually takes 1.5 or 2 to have a radiologist read the test.  Oh well. 

Waiting, not so patiently. The hardest thing. 

The New Normal

I went in to see Dr. 7 on Wednesday and had my usual brief upbeat reality check.  How am I doing?  Normal.  The NEW Normal, not where I want to stay, but where I was last chemo round and the round before and the round before.  That is to say, NO neuropathy, some tinnitus/ ringing in the ears in the evening, NO hearing loss, YES heat sensitivity, NO nausea, etc. etc. etc.  We talk through the main serious side effects.  YES, I'm still working, but can't work much in the heat.  Every thing is normal, the NEW Normal.  The Chemo Normal. 

We talked about the cancer blood marker decreasing by 1/3 last blood test.  What does it mean?  It means the cancer marker went down.  Why did it go down?  We'll know after the next CT scan.  One accessible tumor seems to palpate smaller, but there are so many factors that it's hard to know for sure.  And that tumor doesn't matter, only the one with the strangle hold on the Inferior Vena Cava that matters.  And we talk about Dr. 6 saying I could have been still on the plateau on an exponential curve of response, and the next CT could show big changes.  Dr. 7 is more philosophical, saying that's possible, both Doctors have seen it all, and what's important is the next CT scan.  But the info we have now - largest (but most insignificant location-wise) alien puppy (tumor) seems smaller, and blood test shows a decrease in the cancer marker.  The new Normal.  I can get the news that we don't know until the scan and accept it.  Patience is not one of my virtues, as my Dad used to say (often). 

I WALKED back to the horses on the 4th, glad to see them!  I need to visit more often, and the heat isn't as oppressive in the morning.  Evening was always my time to ride - after work - so I need to rearrange my thought process and go in the morning.  I feel like I'm neglecting them, I'm so glad to have the trusted employees at Indian Ridge taking such good care of them.  Ponies - as I call them, even the now deceased Dickens at 17 hands and 1750 lbs was a pony.  Dreamer and Stormy were happy to see me.  I'm so glad to be loved by my ponies. 

Next I drove over to 7 Mile Road and headed slowly over to the county line, birding on the way.  There was lots of song for July including an Ash-throated Flycatcher, and more Black-throated Sparrows than I usually see here.  The Cassin's were singing well.  I keep hoping for a Hidalgo Botteri's Sparrow somewhere like this, but today wasn't the day. 

Ambetter, the insurance company, denied the next CT scan - they're 5 for 5 on that.  Usually the excuse is they couldn't find the documentation that Veronica, the nurse sent in - even after Veronica called and confirmed they got it.  Then Veronica, donning her Superwoman costume, has to go to the peer to peer review and bludgeon the reviewing doctor with the idiocy of denying the scan by providing the SAME DATA that she sent the first time.  It has to be a waste of time and money for Ambetter to play this game, since they're paying doctors to do the same work twice and still paying for the scan.   The one CT scan that wasn't challenged when denied and wasn't from Dr. 7 but from my Primary Care Physician would have located the tumors six or eight months sooner.  Idiocy. 

Almost forgot.  I asked Veronica where this CT was located, and it's a new office. That makes 5 places I've had tests scheduled.  It's downstairs, same building - so I stop by to talk to them on my way to the blood work for chemo.  I was moving the test to the morning when the admin said "the tech prefers you fast 8 hours".  Now I'm no rookie, and the last 4 scans were 2-4 hours fasting.  Why would the tech need me to fast 8 hours?  He's not reading the test, he's just doing the scans.  Well, that's what he likes says the admin, though admitting that all the other CTs and the main scheduling office recommend 4 hours.  Let me have the number for the central scheduling office!  I call Veronica and she says she normally tries to schedule people elsewhere.  Hm.  Wait, what?  So I call in and inform the nice lady at the main scheduling office that I need a test the same time and day but at a different office, because the tech at the office where I'm scheduling insists on 8 hours fasting instead of 4 hours fasting.  The scheduling office agrees that's odd, 4 hours is recommended.  I said it's not odd, its crazy, I'm not doing it.  I need an appointment at a different site, same day and time.  Voila, new site, same time.  Oh,  where is it?  Yet another new site, 6 places I've had tests scheduled.

So I go in for chemo today, July 5, and I hear after 45 minutes (30 minutes from appointment time) that there's a problem, maybe with finance.  The hospital website was down last night so I ended up paying a small bill on my phone, so I know the record at finance is clear. I call finance and miracle of miracles I find a live human and confirm that there is no hold at finance.  I go back to the check in staff and they inform me it's not a hold with finance, it's a hold from the insurance company!  As of June 28, two of my drugs (the two effective chemo drugs) now require prior approval.  Stalwart staff from the chemo office are walking the issue over to Veronica, the same Superwoman, who is back doing battle with the insurance company.  I hate to say it, but that's the NEW Normal. 

So having a fully charged cell phone and a serious case of annoyance with Ambetters customer service (actually lack thereof) I call Ambetter.  After finding two electronic chains that lead me to a recorded message saying I've reached them after business hours (9-930 AM on Friday July 5) I find a live human.  I explain the issue - I've had this treatment every three weeks for 5 cycles.  They should have notified me IN WRITING that this change was happening, and furthermore they should have notified my doctor IN WRITING.  By the fifth time explaining I was complaining about their lack of concern for their customers (and using smaller words each go, no "furthermore" by the second round) I think they got it. 

I say "they" not to be politically correct - we didn't get to personal pronouns until later - but the pharmacy tech that joined the call was trying to tell me how to fix the issue. I said again - fourth time here - that the Doctors office was doing that, I was complaining about customer service.  I should have been notified - and my Doctor should have been notified.  In writing.  That's when the pharmacy tech - female - called my doctor HE.  I about had a cow. Here's three women - my guess on voice for the other two- on the phone and one presumes my doctor is MALE.  I chewed her out and told her in this day and age she should not presume to gender label my doctor, who is indeed FEMALE.  But they should have just said my Doctor.  Remember, all this is being recorded.  So one more go through my complaint, issue forwarded up the chain through Ambetter and the pharmacy, and ten minutes later I get started on the chemo.  An hour and a half has passed since I arrived.  The operator at the phone back actually did a good job, asking for my Doctors name and FAX number.  I tried explaining I don't FAX with my Doctor, that's outmoded technology.  I call, text, and email my Doctor, but I don't FAX.  I do pass along her phone number, she can ask for the FAX.  And bless her heart, she offers up the direct line to the phone bank at Ambetter.  Wow.  Now I can call all the time!  Look out!  Let's not make this NORMAL. 

Oddly when they take my blood pressure it's a bit lower than normal.  Perhaps I need to rant more often?  My heart rate is up 10 bpm, probably for all the loud talking and hand gesturing.  Red blood cells seem to be going down but otherwise blood work looks normal. The NEW normal.  Of course, I have no idea what the old normal is, they didn't start sticking me regularly with needles until I was sick.  

I later take to social media to complain about Ambetter's lack of customer service, but I don't mention there that I have cancer so it's hard to whine too loud about the lunacy of it.  Perhaps they should approve the PLAN of  # number of chemo treatments followed by a CT, but no, they want to deny each drug and test individually. 

So on to the seven meds.  Seven?  Eight.  Pills are Pepcid. Benadryl. Tylenol. IVs and push are Steroid.  Steroid. Nausea drug. Chemo Drug one.  Chemo Drug two.  Still a mix up over the Pepcid by mouth - they have IV but not pill.  I'd rather take a pill over an extra 30-45 minutes IV, so we wait for pharmacy to send it later with the chemo drugs.

As usual the 50 mg of Benadryl and the steroids and who knows what else gives me a couple hours of a nice nap.  And then home for an early snooze after eating a Whatburger I grabbed on the way.  Almost 8 PM,  about time for bed on chemo day.