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. 

Ups and Downs and Ups

It's been an interesting week.  I knew where I stood and what to expect with Dr. 7, my former chemo Dr.  I haven't had any other chemo Drs yet, and only one other oncologist,  a surgeon. 

Monday I had a blood test since the chemo drug I'm on can severely suppress blood counts.  I took it easy Tuesday and went birding walking a mile over the morning on Wednesday.  After lunch at the Blue Onion (Southwest Pork Green Chile day!) I headed home putting my feet up by 430 PM.  And that's when it got interesting. 

The phone rang.  It was the infusion / chemo suites.  Dr. 8a, my new temporary chemo Dr, ordered an injection to boost my white blood cell counts.  I didn't know that my counts were 10% normal on Monday - no one told me that!  I have to call in to get test results, they don't volunteer that info.  But here they go telling me I had to come to the hospital for a shot RIGHT NOW before 5 PM.  Um.  My blood counts were low two days ago, and the counts are supposed to rebound by 14 days after treatment.  Traffic is so bad that it's probably a 45 minute ride to the hospital at that hour of the night.  I play 20 questions with the nurse on the phone and find out how low my counts were, two days ago... !  Why they didn't tell me sooner... sigh.  Anyway, I talked to the nurses in both infusion and chemo Dr offices and decided that we could wait until the appointment today and see what the blood test shows Friday morning. 

So I went in early and gave blood (third stick was the charm), and went back in for a Dr appointment at 1:20 PM.  I'm informed the Dr hasn't finished his morning patients and was just leaving for lunch.  Um.  It's going to be a long wait.  I get copies of the blood work and the good news is my blood counts were back to normal (and more) this morning.  And it was a LOOOOONNNNNNNGGGGGG wait - over two hours.  When the Dr finally introduced himself to me he went back through everything from diagnosis to biopsys to past treatments.  He ended up recommending four days of chemo instead of five, to see if that helps with the blood counts.  He also passed on seeing me again for four chemo cycles, which the nurse overruled into two cycles.  Interesting.  So as long as the blood work is as expected / OK, I can keep going without seeing a Dr.  I did get an appointment for Dr. 8b, another temp, for January. 

Dr 8a was entertaining - he got turned around and thought I'd left at one point.  And as I was leaving he wanted to know about the venogram!  He thought an ultrasound would be the way to go - I'm already in the waiting room, lol!  I said at this point I'll see if the shadow shows up on the next CT. 

So two more rounds of chemo and meet a new Dr.  That's the plan.