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.
Saturday, December 28, 2019
Friday, December 20, 2019
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.
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.
Tuesday, December 10, 2019
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.
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.
Friday, December 6, 2019
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.
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.
Tuesday, November 26, 2019
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
.
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.
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
.
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.
Saturday, November 23, 2019
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!
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!
Sunday, November 10, 2019
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.
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.
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