Wait, what? And more waiting.

Dr 8(a) gave me an order for a blood test for standard counts when I saw him early January.  He wanted to check the counts a little earlier, and of course the treatment lasted a little later (and was more spread out).  I got the blood work done yesterday but no one called.  I called this morning and one nurse couldn’t get in the system.  They had the admin person call me back.  The first this she told me was my counts were fine - and why shouldn’t they be, they were fine the day before treatment!  Yikes. They weren’t fine at this point in the chemo cycle the last two cycles, in fact they were so bad they immediately started treatment with packed red blood cells once and immunity boosting shots - and wanted to (but waited too late) the other time.  But not to worry the admin tells me she will ask the new temp Dr if I need another blood test this cycle or not.  That gives me such confidence!  NOT.

I wrote that 10 days ago.  Yesterday I saw a new Dr (let's call him 8c) and was seriously disappointed that it took an hour until I got vitals taken, and was reseated in the main waiting room.  Usually it's on to an exam room.  So I went and talked to the admin person and she said there were still two ahead of me.  So another hour wait?  Seriously?  I asked her if she ever called patients to tell them the Dr was behind and she said no.  Yikes.  She asked if I wanted to see a supervisor. Stupid question.

So the supervisor came over to talk to me and offered to jump me in line!  How does that fix the issue?  If the temporary Dr needs half hour appointments instead of twenty minute appointments they should increase appointment lengths, if he's staying until 7 to finish appointments that would stop patients from waiting for hours to see a Dr.  Same amount of time, same number of appointments.  She said she needed all the appointment slots.  I said same number of appointments, less time waiting for the Dr for the patients.  All she did was maintain party line.  So they kept telling me "Miss Liz" would come talk to me.  Whoever that is, she never did.

I liked Dr. 8c a lot.  We talked about a lot of options and got the schedule down for the next month.  I won't go to see another temp Dr without calling in first.  DHR admin has never showed that they care one whit about patients.  The Drs and nurses are awesome, but the admin sucks.  Fix the problem.  It's costing you Drs.

Round 3 - Ding Ding Ding!

I made it through round 3 of the 3rd chemo drug last week with little problem.  Dr 8(a) had reduced the treatments from 5 (daily M-F) to 3 days, and listened to my request for MWF treatment.  So far so good, no fever unlike past rounds with this drug.  That could still change though last cycle I was already feeling the effects of fever every afternoon and that treatment ended on a Thursday.  Here's hoping my counts stay up, but from the bruises blossoming on my left arm I don't think that's likely to happen.  Stay tuned.

The plan was to take it easy today since I made the trek to Estero Llano Grande State Park yesterday.  That plan went out the door when a Fork-tailed Flycatcher was found in Hidalgo Co. about 45 min drive away.  I headed out the door shortly after 3 PM and enjoyed good looks at this sometimes cooperative and sometimes almost roadkill bird.  Thanks to JY for finding it and HH for keeping an eye on it until I got there.  A new Hidalgo bird is hard come to by for me! 

Happy New Year!

Good news on 1/2, all counts are up.   Finally. 

I did the Bentsen CBC in the morning on 1/3, flushing a boat load of Sprague's Pipits with the help of Laura, Rick, May, Tom and and Connie at Anzalduas before more CBC birding and of course lunch at Taco Express.  Then it was off to my Drs appointment.  Thanks to Rick and May for coming over before their (finally) sunny Butterfly Hike, and Tom, Connie and Laura for finishing off the afternoon! 

I went in and saw Dr 8(a) again, evidently his last day as a temporary doctor in the practice.  The continuity helped and our discussion was good.  We've got a plan to go ahead with treatment and try to avoid the crashing blood counts  that could make an infection all but inevitable with time.  The best thing for me was while I was checking with the chemo scheduler about the changes (warning her of the Dr orders to come) chemo nurse Jocelyn came out and talked to me about the changes and how we will monitor my blood counts for the inevitable decline afterwards.  It is great to have her looking out for me. She's awesome!

My next appointment is with yet another new temporary Dr. And I've had appointments with a couple other new Drs that got moved up or changed.   The revolving door of temporary Drs is frustrating, it's a difficult situation for the patients and the Drs.  I have to start at square one (see, I've had this fever for 3 years now so that's nothing new...) and they have to scroll  through pages of medical history to catch up (in a 20 minute appointment slot). 

Onwards.

Adios 2019

2019 was a year of landmarks and not good ones. 

1 cancer diagnosis
3 minor surgical procedures
2 blood transfusions
18 days of chemo
a gazillion and two blood draws
Untold doctors (5 in December)

I ended up getting another transfusion yesterday (12/30) as my platelets and hemoglobin were still low.  I also got an immune booster since my white count was also low.  So I'm taking it slow and avoiding people so I can stay healthy. 

Here's to progress in 2020. 

Another unwanted first

Let's see. 

Chemo 12/16-19

Fever 12/22-24 

Lovely dinner at a friends on Christmas, where I overate on rich food.  Ah, Christmas!  Thanks to all who sent presents, cards, emails, texts, and all. 

12/26 no energy at all. 

Friday 12/27 I had a blood test to see how my blood counts are doing and then coffee with Rick and May at Estero.   We went to lunch before the butterfly hike.  I got a call from the Drs office at lunch, my counts are very low and an on call Dr I've never met has prescribed two units of blood.  When can I make it in?  I head out and get typed and crossmatched for the transfusion.  An hour later I'm hooked up to a pint of blood, all they have time to get me today.   I do feel more energy after the transfusion. 

I'm scheduled for the second pint on Monday. I talked to the nurse for a while before I left, and requested another blood count on Monday.  I'm reluctant given my history with blood counts "over recovering" in the past to just take the pint of blood without getting a fresh set of counts.  And I scheduled a Drs appointment before the next chemo cycle. 

So I'm not in quarantine but I'm supposed to wear a mask and be very careful of exposure to other people especially sick ones.  I have a little more energy but haven't tested that yet.  I did get a few overdue chores done. 

send energy...

I went in on Friday 12/10 to get the results from the cultures taken on Monday last week.  They weren't in the computer, but nurse Veronica dug them out.  All the cultures were negative so absolutely no info there.  Dr 8(b) said it could be "tumor fever", which goes along with my history when I was trying to get the FUO (Fever of Unknown Origin) diagnosed.  I spent the week and weekend with no energy, and I'm still lagging badly.  I did get put on antibiotics and had no effect from them.

Dr 8(b) said I didn't need any blood work before chemo (my last CBC was 21.5 white count, high) and I was good to go for chemo on Monday.   I decided I better check with the infusion office before leaving.  So nurse Jessica came over and we talked it over. She's uncomfortable with not having a new CBC before starting, so I'm headed in two hours early on Monday for the blood test.  That way if they do chemo it can all be one stick in the port even if it's a waste of time over having it done Friday while  I was in the office.  So I left it for Monday. 

My next appointment with yet another new Dr. (8c?) was moved so I have another appointment with another Doctor in January.  I suspect I'll be seeing a Doctor in that office sooner rather than later.  

It was a bad week for hair, with all my scalp hair coming out.  Hair everywhere, even the pillows are prickly. All the gray seal fur is gone. 

This week I started with a stat blood test showing still elevated white counts on Monday 8/16, but we went ahead with the chemo as I had no fever and Dr 8(b) had left approval to go ahead.  Unfortunately the port was balky but we got good blood flow with holding my breath.  That's the first issue with the port working correctly. 

Four days of chemo instead of five since my white blood cell counts crashed so badly on five days last time.  We got through them with the port acting up two days.  Both days we had to do the premeds and then recheck the port, doing some fiddling on the way.  But it works so far.  The premeds increase my appetite, which is not a bad thing.  I feel better too, more energy and back to more normal stats on vitals. 

So I'm scheduled for another chemo after the holidays, and a blood test part way through the holidays to see how my white counts are holding up. At least the charge nurse in infusion is keeping close tabs on me!  I'll be able to see how risky it might be to visit people between Christmas and New Years. 

I've got a stack of packages in the front hall with thanks to family and friends.  I struggle with the holidays, not being much of a fan at this point.  The only things I've opened so far were cookies and something extraordinary I'll write more about later.  I hope you all have a Merry Christmas!   Thanks for cheering up mine. 

Ugh ....

I went in Monday for chemo and my temperature at check in was 99.1.  The nurses checked it again and it was at 99.9 and then 99.5.  The doctor (another new temporary one I haven't met, let's call him 8b) ordered a shitload of tests most of which we did, looking for an infection.  So two hours later I go home with a lot less blood and a urine test.  So far all are negative or still in progress.  Being the pushy patient I asked if they were doing another CBC since that reading Friday at 15 was part of what had them on alert for infections.  They hadn't been planning on it, but they added it in.  I bought a new thermometer on the way home since I'm not sure where the other one got to... I could have left it in a hotel room or it could be in a suitcase or who knows.  The first two readings are normal, but after I got home it bounced all over from 98.1 to 100.5. 

So today I got a call that they won't have the blood work (peripheral and port looking for a port infection) preliminary results until late tonight/tomorrow.  The urine test seems clear, and the white count is now over 21, showing an infection.  My stomach has been upset off and on, but not much else to report to the nurse.  She said with the white count the Dr was ordering antibiotics, so I just picked those up.  Hoping it turns around quick.  And hoping I keep lunch down.

I have a Drs appointment with another Dr (8b?) on Friday.