Where is everyone gone?
Comments
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Strategic moves
Scans coming up on the 19th. Meet w/the doc on the 24th. Daughter leaves tomorrow for a semester abroad which, let's face it folks, is stressful for mom & dad. So I'm going to go into lock down, full steam ahead mode - that means plan fun activities, day trips, dinners/movies out, walks with friends, projects around the house. Im going to keep busy & moving forward. Not alow too much down time to think scary thoughts or dwell on scenarios that may not be a reality. I'll probably get testy at times (poor hubby). But I will not be trolling here that often in the coming weeks. Just works for me at this point in my journey to lay low here and spend more time out & about, dancing in the daylight. If you know what I mean. Here's a Buddhist saying that I think really relates to us: "The secret of health for both mind and body is not to mourn for the past, worry about the future or anticipate troubles, but to live in the present moment wisely and earnestly." Easier said than done of course, but a worthy goal. Shalom y'all!
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Alive and kicking
Eims,
thanks for checking. I'm lurking in the background...... reading posts.
Where I can offer, I'm posting.
quarterly scans coming in three weeks. it'll be nice to see what the spots in my right lung (that showed on last scan In July)
have been up to.
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Still here
A little battered, but still here.
End ed up in the ER with acute bronchitis....misserable! Found out Tuesday I didn't qualify for a trial drug,but did qualify for a trial MRI. Declined on Wed. Saw a pulmonaologist yesterday, he put me on many more new drugs as I was coughing up blood. My oncologist figured that was from the cancerous tumors in my chest area. The pulmonaologist is leaning more on the side of the blood is showing up because of how hard and constant I'm coughing....he wants to control the cough by the 18th before he jumps into a bronoscopy.
Won't be starting Votrient until after the 18th when the pulmonary guy clears me.
Never a dull moment around my house
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Hi Baaa-bs..! Hope yourBaaa-bs said:Still here
A little battered, but still here.
End ed up in the ER with acute bronchitis....misserable! Found out Tuesday I didn't qualify for a trial drug,but did qualify for a trial MRI. Declined on Wed. Saw a pulmonaologist yesterday, he put me on many more new drugs as I was coughing up blood. My oncologist figured that was from the cancerous tumors in my chest area. The pulmonaologist is leaning more on the side of the blood is showing up because of how hard and constant I'm coughing....he wants to control the cough by the 18th before he jumps into a bronoscopy.
Won't be starting Votrient until after the 18th when the pulmonary guy clears me.
Never a dull moment around my house
Hi Baaa-bs..! Hope your cough clears up FAST..! And I hope the big "V" works for you..! I really am going to miss the Votrient, it sure kicked the Mets A$$ big time for me... hope it does for you, without all the Liver issues..! Hang in there... keep us posted..!! Sending thoughts and prayers your way..!
Ron
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Thanks Gordon Charles..! IGordon Charles said:This is for Ron
Inlyta you say....as you probably know elevated BP is one of the things they look for. Supposedly some rise in BP indicates the drug is working...too much and they pull it. The first time I was on it I monitored my BP at home... it spiked and I came off the drug. After a time on Afinitor and a change in oncologist we circled back to Inlyta. Because....wait for it......seems I was taking my BP wrong and that accounted for the elevated readings....operator error! So now I'm back on Inlyta 5mg twice a day. BP is up but under control....as my oncologist said when I expressed concern about elevated BP causing me to come off the drug a second time.... "... we have lots of ways to deal with high blood pressure...and only a few ways to fight renal cell carcinoma... if the Inlyta works for you we aren't going to let high blood pressure stop you." No Prisoners!
Thanks Gordon Charles..! I was just reading about your first try on Inlyta.. hope this time your results are much better..! I now have two BP machines at home, and the one was tested and consistently read high.. Guess some are better than others. So, my new machine is more accurate, plus it has internal memory to record like a few hundred tests. This lets me share data with my Drs and now the Drs can make better decisions for me this way. I had a definitive BP pattern on the Votrient. Will now see what happens on the Inlyta.
Be Well All..!
Ron
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Hi ya Miashelle... FYI, whenMiashelle1 said:
I am still here
Still reading.....still pissed at my diagnosis lol but still here x x xHi ya Miashelle... FYI, when I read your name here.. I begin to sing the olde Beatles song... Michelle, my Belle..
Hang in there.. and I agree being pissed is a good thing... put on the boxing gloves and fight..!!LFT = Liver Function.. some of us have very sensitive Livers... Did you know that.. "There must be 50 ways to love your Liver.?". I do not mind being sensitive, but a sensitive Liver is not good for fighting RCC. But my boxing gloves are on...
Hang in there young lady..! Keep us posted... we do care..!
Ron
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ScansBaaa-bs said:Still here
A little battered, but still here.
End ed up in the ER with acute bronchitis....misserable! Found out Tuesday I didn't qualify for a trial drug,but did qualify for a trial MRI. Declined on Wed. Saw a pulmonaologist yesterday, he put me on many more new drugs as I was coughing up blood. My oncologist figured that was from the cancerous tumors in my chest area. The pulmonaologist is leaning more on the side of the blood is showing up because of how hard and constant I'm coughing....he wants to control the cough by the 18th before he jumps into a bronoscopy.
Won't be starting Votrient until after the 18th when the pulmonary guy clears me.
Never a dull moment around my house
I have my scans coming up on the 17th September and an ultrasound on the 23rd. Then hopefully it will just be X-rays and ultrasounds for future check ups.
Djinnie x
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Yepmrs_blkjak said:We are still here. Blkjak's
We are still here. Blkjak's next scan is in a few weeks, and we are praying for more shrinkage!
We are still chugging along. Next CT scan is on Sept. 23rd, then we meet with the Onc on the 24th. Had a blood test last week that was perfectly normal so the Votrient isn't making my liver angry. I figure the scanxiety will start in another week. Friggin' RCC!
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Annie.. glad I got you toanmazon said:Awww, Ron!
Yer making me blush!
Might wanna mark your calendar--last time this occurred (blushing) was about 42 years ago.
Thank you.
Annie
Annie.. glad I got you to blush..!! Heck, I did not blush that second day after my surgery last year... I got up to use a portable commode.. shuffle shuffle my feet got next to the commode, the nurse took off my gown.. I sat down.. But I then figured out I was standing naked in front of a very large window, just near the gardens where there were a lot of people... hope they got a good show..!!!
Ron
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I'm still here. Got blood
I'm still here. Got blood drawn today and will see my primary care doc next Thurs. I don't have my next CT until the second week in Oct. I'll see my Urologist on the 15th of this month. Doing pretty good. Still tired and having weird "zapping" pain on my left side low in the abdomen and in my left thigh...also have a cough that started up a week or so ago and won't go away, but....as Mary Todd Lincoln said...."other than that one little incident, the play was quite enjoyable!" Y'all all take care and I'll be sending good thoughts, white light, prayers, whatever it takes, for all of your treatments to do nothing but good and kick this monster's **** all over the place!
on a happier note, I have gone back out to my studio and have been melting glass and making beads! This is the first time I've had the inclination to be creative again. Heck, I might even start a stained glass window if this creative burst continues. Sure feels good to want to create again.
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Hi Baaa-bs..!GSRon said:Hi Baaa-bs..! Hope your
Hi Baaa-bs..! Hope your cough clears up FAST..! And I hope the big "V" works for you..! I really am going to miss the Votrient, it sure kicked the Mets A$$ big time for me... hope it does for you, without all the Liver issues..! Hang in there... keep us posted..!! Sending thoughts and prayers your way..!
Ron
Just want to endorse Ron's remarks and associate myself with his good wishes to you!
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Damn, Ron...GSRon said:Annie.. glad I got you to
Annie.. glad I got you to blush..!! Heck, I did not blush that second day after my surgery last year... I got up to use a portable commode.. shuffle shuffle my feet got next to the commode, the nurse took off my gown.. I sat down.. But I then figured out I was standing naked in front of a very large window, just near the gardens where there were a lot of people... hope they got a good show..!!!
Ron
You've inspired me! If I have to go back in the hospital, I'll definitely have to ask for a room with a better view.
He he he he he!
Annie
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oooooo tillie will you showTillieSOK said:I'm still here. Got blood
I'm still here. Got blood drawn today and will see my primary care doc next Thurs. I don't have my next CT until the second week in Oct. I'll see my Urologist on the 15th of this month. Doing pretty good. Still tired and having weird "zapping" pain on my left side low in the abdomen and in my left thigh...also have a cough that started up a week or so ago and won't go away, but....as Mary Todd Lincoln said...."other than that one little incident, the play was quite enjoyable!" Y'all all take care and I'll be sending good thoughts, white light, prayers, whatever it takes, for all of your treatments to do nothing but good and kick this monster's **** all over the place!
on a happier note, I have gone back out to my studio and have been melting glass and making beads! This is the first time I've had the inclination to be creative again. Heck, I might even start a stained glass window if this creative burst continues. Sure feels good to want to create again.
oooooo tillie will you show us some pics of your work....pleeeeeeasssse x
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sometimesJoe_fh said:I am still alive and kicking.
I am still alive and kicking. I know, I should check in more often.
Everyone comes to terms with their kidney cancer diagnosis. The panic partially pases. we have to wait for followup appointments and scans. Can't do much in the mean time. What do we have to say? So we wait. Try to move forward. I still maintain that it is necessary to live on. Those of us who have been here awhile realize that we ain't dead yet. Don't waste energy on the negative. Being active, enjoying friends and family is a priority. Whether it is hitting a golf ball, riding a motorcycle, or working in a garden. We don't get daily reports. So LIVE ON!!!! It gets quiet doing this. We are not going to discuss aches and pains all the time. Or any of the craziness related to cancer. This is the Cancer Survivors Network! .....I do hear there is a web site for those who no longer are living on. It is the "Damn, I wish I hadn't wasted my time worrying" website. So things do get quiet time to time. Then the cycle repeats itself and we can't keep up with all the changes going on. Praise quiet times. They don't last.
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foxhd said:
sometimes
Everyone comes to terms with their kidney cancer diagnosis. The panic partially pases. we have to wait for followup appointments and scans. Can't do much in the mean time. What do we have to say? So we wait. Try to move forward. I still maintain that it is necessary to live on. Those of us who have been here awhile realize that we ain't dead yet. Don't waste energy on the negative. Being active, enjoying friends and family is a priority. Whether it is hitting a golf ball, riding a motorcycle, or working in a garden. We don't get daily reports. So LIVE ON!!!! It gets quiet doing this. We are not going to discuss aches and pains all the time. Or any of the craziness related to cancer. This is the Cancer Survivors Network! .....I do hear there is a web site for those who no longer are living on. It is the "Damn, I wish I hadn't wasted my time worrying" website. So things do get quiet time to time. Then the cycle repeats itself and we can't keep up with all the changes going on. Praise quiet times. They don't last.
A recent human interest story was written about Mike Riley, head football coach at Oregon State University, and published in The Oregonian. To shorten and paraphrase: He hasn't won every football game of his career, but early on, his wife had asked him to be there for his own children after work. That meant coming home, late sometimes, for dinner and spending time with his 2 kids. He said you can choose to be moody, or not. But don't impose your bad moods on everyone around you.
So yes, we all get anxious, fearful of the next test and what the results may bring, but don't go all moody on us. Nobody benefits, especially the one with the Baaaaaad Mood.
Donna
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Spot on Fox.foxhd said:sometimes
Everyone comes to terms with their kidney cancer diagnosis. The panic partially pases. we have to wait for followup appointments and scans. Can't do much in the mean time. What do we have to say? So we wait. Try to move forward. I still maintain that it is necessary to live on. Those of us who have been here awhile realize that we ain't dead yet. Don't waste energy on the negative. Being active, enjoying friends and family is a priority. Whether it is hitting a golf ball, riding a motorcycle, or working in a garden. We don't get daily reports. So LIVE ON!!!! It gets quiet doing this. We are not going to discuss aches and pains all the time. Or any of the craziness related to cancer. This is the Cancer Survivors Network! .....I do hear there is a web site for those who no longer are living on. It is the "Damn, I wish I hadn't wasted my time worrying" website. So things do get quiet time to time. Then the cycle repeats itself and we can't keep up with all the changes going on. Praise quiet times. They don't last.
...
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