Well, it's ups and downs. Day 2 after treatment finds me walking 3/4 of a mile (albeit slowly) and spending the morning birding. I feel surprisingly good. My body temperature has been running even lower than normal.
Then the bottom fell out. The next two days I ran a marginal fever and only managed to avoid being admitted to the hospital because I didn't have any other signs of infection. I slept most of the time. Two lost days.
And now I feel good again, I managed to go to the grocery store and pick up a few essentials. I did have to pass on a day of relatively easy work. I hated that. And I miss appetite. Food has no interest to me most of the time. It's hard when eating is a chore.
Not much has changed, thanks for thinking of me. I appreciate the ideas for gentle entertainment. I seem to see cancer everywhere on TV, in commercials and programs, and I find that depressing. Dark entertainment is not for me right now, no end of the world stuff needed. I find books as important as TV now, and will often listen to recorded books when I can get them. Fiction, drama, mystery, fantasy, sci-fi, all good.
I'm hoping to get out and enjoy more of the river of hawks migrating overhead. I'm sorry to see my winter Texan friends leaving. Hurry back!
Please remember I'm entering my "easily contaminated/low resistance" phase. I am not a touch-feely person to start with, but please don't touch me or spend time near me if you're sick or could be contagious. For my part, I'm trying to stay optimistic and hope for good results from the chemo.
Stay tuned.
Thursday, March 28, 2019
Friday, March 22, 2019
Chemo Commences - Finally!
If you want to see my suggestions for contacting me without causing me stress or adding to an already emotional roller coaster, see this page. To start at the beginning, see https://marybirds.blogspot.com/2019/03/testing-testing.html
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Before every chemo treatment there's blood work required to be sure I can handle the treatment. I asked at the sign-in yesterday when I got my blood test what time I'd be done today and after consulting the notebook I was told about 4 pm.
I arrive a few minutes early for a 11:30 appointment, pay the out of pocket and am back sitting in the waiting room by 11:30 for my appointment. Occasionally a nurse calls someone into the lab room or another nurse calls someone into the Infusion room. Finally after 45+ min they take me through the mystery door and take my vitals in a bland infusion room with a curtain separating my room ("Peace") from other rooms (more cubicles). The rooms have a recliner and a chair and a small TV and not much more other than medical stuff. Blood pressure a little high again today. No stress LOL! But it's back to sitting and waiting again, this time on the east side of THE DOOR. Random beeps start up all around me set nurses scuttling to silence them. I later learn that every time an IV ends the machine beeps.
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Before every chemo treatment there's blood work required to be sure I can handle the treatment. I asked at the sign-in yesterday when I got my blood test what time I'd be done today and after consulting the notebook I was told about 4 pm.
I arrive a few minutes early for a 11:30 appointment, pay the out of pocket and am back sitting in the waiting room by 11:30 for my appointment. Occasionally a nurse calls someone into the lab room or another nurse calls someone into the Infusion room. Finally after 45+ min they take me through the mystery door and take my vitals in a bland infusion room with a curtain separating my room ("Peace") from other rooms (more cubicles). The rooms have a recliner and a chair and a small TV and not much more other than medical stuff. Blood pressure a little high again today. No stress LOL! But it's back to sitting and waiting again, this time on the east side of THE DOOR. Random beeps start up all around me set nurses scuttling to silence them. I later learn that every time an IV ends the machine beeps.
I've learned not to trust what I'm told, so I asked the nurse who put in my IV what time I'd be done and she said 4 or 430 but it could run longer depending on my body. The IV
went in at 1 and there were 5 pre-drugs and a saline flush that took over an
hour and a half. Then and only then I learned that the two chemo drugs are
planned for 3.5 hours. Everyone was way
optimistic on my treatment time (or couldn't add) and that was BEFORE I reacted to the first
chemo drug and needed an extra 40 minutes IV time. There I was, sitting in the recliner, the first chemo drug just started when I began
feeling very flush and HOT. They stopped
the IV and gave me more Benadryl, some steroids and Pepcid. They said I turned bright red! I believe them. What a hot flash! LOL
Then it was back to the cancer fighting drugs and I did fine on the three hour IV, no reaction this time. Yay for poisons as long as they work! The second chemo drug was set running too slow at first (this found at 720 PM) so I finally got out of there at 8 PM. My very good friends Rick and May Snider were in the parking lot, waiting to drive me and my car home SO MUCH LATER than we all thought. True friends! I can't thank them both enough for their support, whether long hours at Estero drinking coffee or just visiting, or rides home from the few treatments that require it.
So tonight I am tired, definitely mentally more than physically. I feel fine, on an even keel emotionally and doing fine thanks to the anti-emetics/anti-nausea drugs in the pre-treatment IVs. If I could take those on a pelagic and sell them to the people seasick on the way out I'd make a fortune!
Out, damn spot! I want to defeat these alien puppies breeding inside of me. Hoping for good shrinkage on the troublesome one.
Update from the next morning. I slept well and feel fine. May all treatments have so little impact on me thanks to the power of pharmaceuticals. I hope the tumors are cringing. Fingers crossed. I took it easy but started getting stir crazy at noon so I went down to Bentsen to watch hummers. No luck on the Calliope, but it was good to get out for a couple hours. Still feeling good as bed time nears.
Update from the next morning. I slept well and feel fine. May all treatments have so little impact on me thanks to the power of pharmaceuticals. I hope the tumors are cringing. Fingers crossed. I took it easy but started getting stir crazy at noon so I went down to Bentsen to watch hummers. No luck on the Calliope, but it was good to get out for a couple hours. Still feeling good as bed time nears.
Thursday, March 21, 2019
Emotional Redux of Cancer - Reality Check
I'm co-opting this blog to be my voice in communicating with friends and family about my health. If that's not what you want to see, quit following this blog. If you want to see my suggestions for contacting me without causing me stress or adding to an already emotional roller coaster, see this page. To start at the beginning, see https://marybirds.blogspot.com/2019/03/testing-testing.html
So I have ups and downs. I worked or had medical tests every day for the first two weeks of March. I felt great emotionally and physically, though standing for long periods is difficult and heat makes me melt. Then I hit an emotional low spot (again), slogging through the day at home most days or getting out birding for an hour or so before heading home. Because of the emotional roller coaster I have had to not engage on issues that bring stress (think border wall), I've snoozed several hundred people on FB (and try not to look at it), and lost a person I thought was a good friend who would always say "talk to you tomorrow" but never did. Anything that causes me stress is OUT. I don't even have the energy to visit my horses, and I miss them dearly.
I met with Dr. #7 and got the go ahead for chemo to start. Two conflicting thoughts run through my mind.
1. FINALLY. It's only taken forever.
2. OMG that's TOO SOON. I'm not ready to poison my body.
But we will start very soon.
I got a call while I was in the office getting the IV for my MRI from my patient advocate at DHR. I still don't know the name of my patient advocate or what they can do for me. I'm shocked at the timing of the call, though I assume they don't have the capability or the time to check my appointment times. I wouldn't have answered but it showed up as the hospital calling.
And the Robo-calls from the billing department are never ending. Today I got the option to have them call me back without losing my place in line - and guess what. They never did. How frustrating to be sending them all my deductible dollars and having them call me and put me on hold for an hour. I'm thinking about blocking them. I pay my bills.
I'm not short on funds (yet), my concerns are more for paid employment in 2019. I need to show work income to keep my Obama-care health care cost discount. So far it's been a great first quarter, thanks to everyone who hired me knowing I was sick. And let's get this done this year, no dragging into 2020. I appreciate those folks who have offered to run a fund raiser for me. I'm a very private person (no news to you if you're reading this) and I don't want this on Facebook or other sites. If things change and I need/want to run a fund raiser I'll take some of you up on your offers.
I got some great ideas for TV shows, and I'm binging on one as I type. More on that in the next post
Forward!
So I have ups and downs. I worked or had medical tests every day for the first two weeks of March. I felt great emotionally and physically, though standing for long periods is difficult and heat makes me melt. Then I hit an emotional low spot (again), slogging through the day at home most days or getting out birding for an hour or so before heading home. Because of the emotional roller coaster I have had to not engage on issues that bring stress (think border wall), I've snoozed several hundred people on FB (and try not to look at it), and lost a person I thought was a good friend who would always say "talk to you tomorrow" but never did. Anything that causes me stress is OUT. I don't even have the energy to visit my horses, and I miss them dearly.
I met with Dr. #7 and got the go ahead for chemo to start. Two conflicting thoughts run through my mind.
1. FINALLY. It's only taken forever.
2. OMG that's TOO SOON. I'm not ready to poison my body.
But we will start very soon.
I got a call while I was in the office getting the IV for my MRI from my patient advocate at DHR. I still don't know the name of my patient advocate or what they can do for me. I'm shocked at the timing of the call, though I assume they don't have the capability or the time to check my appointment times. I wouldn't have answered but it showed up as the hospital calling.
And the Robo-calls from the billing department are never ending. Today I got the option to have them call me back without losing my place in line - and guess what. They never did. How frustrating to be sending them all my deductible dollars and having them call me and put me on hold for an hour. I'm thinking about blocking them. I pay my bills.
I'm not short on funds (yet), my concerns are more for paid employment in 2019. I need to show work income to keep my Obama-care health care cost discount. So far it's been a great first quarter, thanks to everyone who hired me knowing I was sick. And let's get this done this year, no dragging into 2020. I appreciate those folks who have offered to run a fund raiser for me. I'm a very private person (no news to you if you're reading this) and I don't want this on Facebook or other sites. If things change and I need/want to run a fund raiser I'll take some of you up on your offers.
I got some great ideas for TV shows, and I'm binging on one as I type. More on that in the next post
Forward!
Sunday, March 17, 2019
Testing, Testing....
I'm co-opting this blog to be my voice in communicating with friends and family about my health. If that's not what you want to see, quit following this blog. If you want to see my suggestions for contacting me without causing me stress or an emotional roller coaster, see this page.
I've been sick for about 2 years with an intermittent low grade fever and nausea, the fever every afternoon (yes, for two years) and the nausea about a week every month. Last March (2018) I went to my new Primary Care Physician (PCP) where I saw a Physicians Assistant and was diagnosed with a bladder infection. I felt great for a week after the antibiotics and then the symptoms came back, so I went back and they tested and found no infection, and my PCP said she didn't think there ever was an infection. After lots of blood tests (all negative) I got sent to Doctors 2-4, a cardiologist (no endocarditis), an infectious disease specialist (tested for several fungi, all negative) and a rheumatologist (never went, six month wait). While I was working my way through this list I started a new symptom in August, one with a prognosis of surgery before I even saw the gynecologist (Doctor 5) (see this Far Side). After an ultrasound, I got the word that I had a tumor the size of a large grapefruit two days before the start of the Rio Grande Valley Birding Festival in November 2018.
So I got a referral to Doctor 6 (gyn/onc surgeon), and the CT scan showed three alien puppies growing in my gut, with one a set of lymph nodes taken over by the invader. This former lymph tissue was biopsied and the type of cancer determined in January. The CT scan showed the former lymph tissue was the troublemaker, as it's wrapped around the inferior vena cava (a big vein to non-biologists) and is preventing my Doctor 6 from removing the tumors surgically. So I got sent to Doctor 7, a chemo oncologist. Another CT scan since it's been three months (lol, never had one before and now three months is a long time) and an MRI to look at a shadowy spot on the first CT. They came back with little change on the CT and nothing to act on on the MRI. Note to self: check to see which MRI machine they will use if you ever need another. The old coffin style MRI had a short line for a reason.
But it seems we're finally ready to start treatment, so back to poking and prodding me soon. I'm a terrible patient. As my dad used to say, patience is a great virtue but sadly not one of mine.
Stay tuned here for updates.
I really like my Doctors 6 and 7. I've got two tough doctors in my camp. The cardiologist was also excellent, but the rest, eh, not so much. I don't think I'll share more on the subject, but I am disappointed in the lack of customer service (e.g. one doctor wasn't even in the office yet after an hour in the waiting room) and communication in health care professionals at the other offices. Sometimes even the Doctor didn't introduce themselves, so why should I expect the nurses to do so?
I've been sick for about 2 years with an intermittent low grade fever and nausea, the fever every afternoon (yes, for two years) and the nausea about a week every month. Last March (2018) I went to my new Primary Care Physician (PCP) where I saw a Physicians Assistant and was diagnosed with a bladder infection. I felt great for a week after the antibiotics and then the symptoms came back, so I went back and they tested and found no infection, and my PCP said she didn't think there ever was an infection. After lots of blood tests (all negative) I got sent to Doctors 2-4, a cardiologist (no endocarditis), an infectious disease specialist (tested for several fungi, all negative) and a rheumatologist (never went, six month wait). While I was working my way through this list I started a new symptom in August, one with a prognosis of surgery before I even saw the gynecologist (Doctor 5) (see this Far Side). After an ultrasound, I got the word that I had a tumor the size of a large grapefruit two days before the start of the Rio Grande Valley Birding Festival in November 2018.
So I got a referral to Doctor 6 (gyn/onc surgeon), and the CT scan showed three alien puppies growing in my gut, with one a set of lymph nodes taken over by the invader. This former lymph tissue was biopsied and the type of cancer determined in January. The CT scan showed the former lymph tissue was the troublemaker, as it's wrapped around the inferior vena cava (a big vein to non-biologists) and is preventing my Doctor 6 from removing the tumors surgically. So I got sent to Doctor 7, a chemo oncologist. Another CT scan since it's been three months (lol, never had one before and now three months is a long time) and an MRI to look at a shadowy spot on the first CT. They came back with little change on the CT and nothing to act on on the MRI. Note to self: check to see which MRI machine they will use if you ever need another. The old coffin style MRI had a short line for a reason.
But it seems we're finally ready to start treatment, so back to poking and prodding me soon. I'm a terrible patient. As my dad used to say, patience is a great virtue but sadly not one of mine.
Stay tuned here for updates.
I really like my Doctors 6 and 7. I've got two tough doctors in my camp. The cardiologist was also excellent, but the rest, eh, not so much. I don't think I'll share more on the subject, but I am disappointed in the lack of customer service (e.g. one doctor wasn't even in the office yet after an hour in the waiting room) and communication in health care professionals at the other offices. Sometimes even the Doctor didn't introduce themselves, so why should I expect the nurses to do so?
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