I know it has been a long time with no post...simply because...very busy here! Spent 4 weeks training new NP's at the office, 2 of which were 5-day-a-week gigs...and when driveway to driveway time is a 12-hour day....well, I was a bit tired!!! All that is done now. Enjoyed returning to my regular work schedule last week, got to have a nice visit with Momma and Daddy, have made a couple trips up to K'ville to see the kids. Brent, Rose and Fred are working hard to prep for their 1/2 marathon on March 18th in Atlanta. They are AWESOME!!! I have been doing my usual runs and elliptical and trying to live up to their fine examples!!!
Had CT's of neck, chest and pelvis, along with an MRI of my brain (all the usual photo ops) on Friday and all is well. No new bumps, bulges, or other unwelcome guests. The Radiologist who read the MRI still claims to see all the "treated areas" she saw before, but reports them as unchanged, so we will just go with that. Brent and I will be heading back to Tampa on Thursday for treatment on Friday. B has big plans to go back to Waltz. I may just order three plates of their pinks and let it go at that!!!
Much love to all for their concern and warm wishes. - c
Sunday, February 26, 2012
Saturday, February 4, 2012
Educated guesses and desperate decisions.....
I've always loved science and the whole idea of the scientific process.
When I was a little girl, somewhere around 10-12 years old, I guess, we had a flock of chickens. Big white fluffy chickens, that I would swear my daddy told me were Rhode Island Reds, but perhaps that was another batch and time has muddled the memory, since those are picture book style, red chickens with smooth, glossy feathers. The ones I did my study on looked more like Leghorns. They had chunky white bodies and roosters as mean as snakes, though they produced a good number of brown eggs. Yes, that's right....my study. I would sit for hours observing and recording data on the behavior of our chickens, just like a miniature Jane Goodall! I still have the notebook somewhere! There was Bandie. She was cuter and more feminine than some of the others, a little shorter, chubbier and a bit more delicate, who just loved sitting on her eggs. We used her to hatch several sets of chicks since she was dedicated to her job. We marked her by putting a band on her leg, hence the name - but I knew her anyway. There was Harry Reasoner. She was a big, ugly (sorry, Harry) chicken that looked EXACTLY like that particular newsman, bushy eyebrows and all! More importantly, she had a special feature that none of the other hens possessed....SPURS! I tried and tried to determine if she ever laid an egg....I think not, but could never prove it. There was Blackie, poor thing. A scroungy, little, hen-pecked black chicken that Daddy had been given from somebody he worked with. Let me tell you, racism and prejudice were alive and well in the chicken run and all observed infractions against sad, tortured Blackie were duly documented.
In school, at all levels, I loved the idea that you could study something enough to figure it out. You need only gain the prerequisite knowledge for the subject, work really hard, and apply the scientific principles. Then, I discovered something hard to swallow...EDUCATED GUESSES! Oh, I get it. I understand the necessity. I use them daily in my practice as I delve what I can from the history, apply what I know of medicine, and narrow my differential diagnosis. I know!! But, it's still a galling pass... Especially when it comes to research and all the things we don't know.... Especially when you're a lab rat.
My heart hurts for all the incredibly smart people from all sorts of backgrounds...who are working so hard to figure out what path to take, what treatment to seek, how to make it available (often out of thin air) for themselves or their loved ones dealing with melanoma. There is often little rhyme nor reason to what folks end up with. With Brent in my corner I have had no limitations regarding comprehension of the most technical papers nor in access to them. Medical and research journals are something he understands and has easy access to. If they are not easily found, he purchases them on-line with a click of a button, something that I painfully realize is not an option for so many. He has absolutely no hesitation in picking up the phone and calling up any doctor of renown in melanoma world, anywhere on the planet. Because of that, pieces of my tumors have been examined in Germany. He's spoken with folks at Vandy (Nashville), Duke (North Carolina), Emory (Atlanta), UAB (Birmingham), and many others. He's read EVERYTHING related to melanoma that has come out of John Hopkins, MD Anderson, Sloan Kettering, Moffitt, Yale...not to mention papers out of Brazil, Germany, and Australia. And he can run with the big dogs! There is no conversation regarding the vicissitudes of melanoma in which he cannot participate and contribute. In fact, sometimes he and Weber appear to be a bit like squirrels as I watch them chatter away!! He has read and followed hundreds of trial options and findings. It is truly to his sole credit that I am on the Anti-PD1/Peptide trial at Moffitt. BUT...here's the crazy, sad, hair raising part...with all that...I am on the ONLY trial that was open to me at the time. Now, that doesn't mean if the trial had been...oh, I don't know: drink 13 glasses of juice prepared hourly in my own home along with three vegetarian meals with a handful of vitamins and other substances including thyroid hormone and stick coffee enemas up my A@#..... WAIT A MINUTE!!!! That's the Gerson Therapy crap that people are still falling for in their utter desperation. But I digress.... Yes, we had talked about some options...that had they been available...I still would not have participated in. So many 'treatments' out there do not have data to back them up. Or, yes, they've been used in the past....but to no avail....and it just seems bizarre and futile to continue their use at this time. But.....with all of that.....what did all this educated guessing get us? Well, perhaps a great deal. It seems that I, along with the rest of my lab rats are doing well. Most of us are still here, and in a group of lab rats with Stage IV melanoma, that's saying a lot....a year and more down the road! But....what does that mean for all the other educated guessers out there? Working so hard to procure a spot on a trial of anti-PD1? They have either failed ipi, or can't afford it, or are in too bad a place to wait on it's hoped for, but slow (if at all) amelioration of their tumors. Is my anti-PD1 drug going to prove to be truly effective? Are any of the other anti-PD1 facsimiles going to do as well? Better? Worse? We don't know. If there are those who do, they aren't telling. All of us with studied, carefully planned and manicured educated guesses, still end up with desperate decisions. c
When I was a little girl, somewhere around 10-12 years old, I guess, we had a flock of chickens. Big white fluffy chickens, that I would swear my daddy told me were Rhode Island Reds, but perhaps that was another batch and time has muddled the memory, since those are picture book style, red chickens with smooth, glossy feathers. The ones I did my study on looked more like Leghorns. They had chunky white bodies and roosters as mean as snakes, though they produced a good number of brown eggs. Yes, that's right....my study. I would sit for hours observing and recording data on the behavior of our chickens, just like a miniature Jane Goodall! I still have the notebook somewhere! There was Bandie. She was cuter and more feminine than some of the others, a little shorter, chubbier and a bit more delicate, who just loved sitting on her eggs. We used her to hatch several sets of chicks since she was dedicated to her job. We marked her by putting a band on her leg, hence the name - but I knew her anyway. There was Harry Reasoner. She was a big, ugly (sorry, Harry) chicken that looked EXACTLY like that particular newsman, bushy eyebrows and all! More importantly, she had a special feature that none of the other hens possessed....SPURS! I tried and tried to determine if she ever laid an egg....I think not, but could never prove it. There was Blackie, poor thing. A scroungy, little, hen-pecked black chicken that Daddy had been given from somebody he worked with. Let me tell you, racism and prejudice were alive and well in the chicken run and all observed infractions against sad, tortured Blackie were duly documented.
In school, at all levels, I loved the idea that you could study something enough to figure it out. You need only gain the prerequisite knowledge for the subject, work really hard, and apply the scientific principles. Then, I discovered something hard to swallow...EDUCATED GUESSES! Oh, I get it. I understand the necessity. I use them daily in my practice as I delve what I can from the history, apply what I know of medicine, and narrow my differential diagnosis. I know!! But, it's still a galling pass... Especially when it comes to research and all the things we don't know.... Especially when you're a lab rat.
My heart hurts for all the incredibly smart people from all sorts of backgrounds...who are working so hard to figure out what path to take, what treatment to seek, how to make it available (often out of thin air) for themselves or their loved ones dealing with melanoma. There is often little rhyme nor reason to what folks end up with. With Brent in my corner I have had no limitations regarding comprehension of the most technical papers nor in access to them. Medical and research journals are something he understands and has easy access to. If they are not easily found, he purchases them on-line with a click of a button, something that I painfully realize is not an option for so many. He has absolutely no hesitation in picking up the phone and calling up any doctor of renown in melanoma world, anywhere on the planet. Because of that, pieces of my tumors have been examined in Germany. He's spoken with folks at Vandy (Nashville), Duke (North Carolina), Emory (Atlanta), UAB (Birmingham), and many others. He's read EVERYTHING related to melanoma that has come out of John Hopkins, MD Anderson, Sloan Kettering, Moffitt, Yale...not to mention papers out of Brazil, Germany, and Australia. And he can run with the big dogs! There is no conversation regarding the vicissitudes of melanoma in which he cannot participate and contribute. In fact, sometimes he and Weber appear to be a bit like squirrels as I watch them chatter away!! He has read and followed hundreds of trial options and findings. It is truly to his sole credit that I am on the Anti-PD1/Peptide trial at Moffitt. BUT...here's the crazy, sad, hair raising part...with all that...I am on the ONLY trial that was open to me at the time. Now, that doesn't mean if the trial had been...oh, I don't know: drink 13 glasses of juice prepared hourly in my own home along with three vegetarian meals with a handful of vitamins and other substances including thyroid hormone and stick coffee enemas up my A@#..... WAIT A MINUTE!!!! That's the Gerson Therapy crap that people are still falling for in their utter desperation. But I digress.... Yes, we had talked about some options...that had they been available...I still would not have participated in. So many 'treatments' out there do not have data to back them up. Or, yes, they've been used in the past....but to no avail....and it just seems bizarre and futile to continue their use at this time. But.....with all of that.....what did all this educated guessing get us? Well, perhaps a great deal. It seems that I, along with the rest of my lab rats are doing well. Most of us are still here, and in a group of lab rats with Stage IV melanoma, that's saying a lot....a year and more down the road! But....what does that mean for all the other educated guessers out there? Working so hard to procure a spot on a trial of anti-PD1? They have either failed ipi, or can't afford it, or are in too bad a place to wait on it's hoped for, but slow (if at all) amelioration of their tumors. Is my anti-PD1 drug going to prove to be truly effective? Are any of the other anti-PD1 facsimiles going to do as well? Better? Worse? We don't know. If there are those who do, they aren't telling. All of us with studied, carefully planned and manicured educated guesses, still end up with desperate decisions. c
Tuesday, January 31, 2012
Hope springs eternal...
Well, maybe it does and maybe it doesn't. I tend to see eternally optimistic and hopeful people and others who couldn't carry a basket of hope if you cling wrapped it and tied it to them. As usual, this quote doesn't mean the obvious to me (if you remember: March 4th = March forth....in my head). Rather, it means...spring is the hope....that is eternal. And so it is....through all the drear rain and cold...the crocus and the daffodils are peaking their heads out on the mountain. New growth is evident on the forsythia, irises and hyacinths. Of course, Brent has always referred to them as the "stupid flowers". But, I like them. They are brave. They are optimistic. They see spring on the horizon long before the rest of us. Hope springs eternal.....or at least, spring does.
And, before I lay me down to sleep, I think of Steven's scans to keep, free and clear, and without an image, no thing to watch, no single blemish....No! Worry free...is what I hope, his scans will be.
Hopefully yours - c
And, before I lay me down to sleep, I think of Steven's scans to keep, free and clear, and without an image, no thing to watch, no single blemish....No! Worry free...is what I hope, his scans will be.
Hopefully yours - c
Friday, January 27, 2012
Trouble viewing???
It seems that blog spot has become incompatible with some of the changes made by some web browsers...internet explorer specifically. If you are looking at the blog, then click on something and the screen goes blank or white....that is your problem. Hopefully it will be fixed soon...but in between...if you like...you can download Mozilla Firefox...for FREE...and use it as your browser. It works great!!!! So well, in fact, that I am keeping it as my browser...the kids have been after me to switch for years!
Have a great day! - c
Have a great day! - c
Sunday, January 22, 2012
Babies....
They are every hope...rolled into bunches of squishy, slobbery rolls. They are the best of what we are. The best of what we are to become. They coo and goo. They make you smile even when you don't feel like it. They yell when they are mad. They smile through their tears. They make my work days wonderful. They give me hope for my future. And even though my babies are 21 and 19 now...they are the best thing I ever had any part of. They have been a wonder from the start and my greatest inspiration. I love you. mommy
Friday, January 20, 2012
Grief
With our loss at work, there have been many talks about grief. Just after a conversation with a friend, I came across this quote by Patti Smith. It really echoed what we were thinking....
"Grief starts to become indulgent, and it doesn't serve anyone, and it's painful. But if you transform it into remembrance, then you're magnifying the person you lost and giving something of that person to other people..."
We miss you, Dr. M. We hope to continue to care for children in ways that would make you proud. - c
"Grief starts to become indulgent, and it doesn't serve anyone, and it's painful. But if you transform it into remembrance, then you're magnifying the person you lost and giving something of that person to other people..."
We miss you, Dr. M. We hope to continue to care for children in ways that would make you proud. - c
Thursday, January 19, 2012
Busy New Year!!!!
My goodness!!! I hope all of you are having a great start to your New Year. It has been busy...but good...around here!! We got both the kiddo's moved to Knoxville. Rosie's move was a wonderful whirlwind thanks to great help from Fred, T, and K (a good friend of Rosie's from Georgia Tech who is luckily doing an internship with a company in Knoxville this semester). Her room was set up in a flash and is really cute, with the most space she's had in a long time!! She spent the past couple of weeks begging and cajoling her way into closed classes! Her charm and good record served her well and she now has everything straight and is cruising along. Fred's return was much less difficult since he has an apartment now, though computer weirdness at the University has made his life a bit complicated, but he is getting his registration straight as well.
Work has been hard. Pediatrics in winter is always a challenge. The loss of one of our doctors has made it mentally stressful and caused the need for more work to implement changes in all sorts of things that may not even seem readily apparent. I was happy to help our amazing office staff and Dr. R. plow through the things we needed to do. However, it has created long days. Yesterday, one of the nurses asked, "Did you leave your car here overnight on Monday?" I told her no, looking puzzled. "It was just here so late!" Then I remembered. I had been going over the NP protocols after the patients were gone. So....it has been a number of extra hours. Next week, coincidentally, we will begin training two new NP's we had already hired. There will be a bit more work connected with that, so..... I am wishing for the sun. It has been very rainy and cloudy here. But, even on sunny days I leave home in the dark and return long after the sun has set. Oh, well...this too shall pass. I still love the nurses and doctors I am lucky enough to work with and the kids brighten all my days.
Brent surprised me last week with tickets to the Chattanooga Symphony for a concert of pieces by Ravel. They included: Pavane pour une infante defunte, Rapsodie Espagnole, and, of course, Bolero. It was an interesting group of attendees!!! We saw floor length furs, smelling ever so slightly of moth balls, alternating with, tight, minimal cocktail dresses on a really chilly night. The octogenarians of Lookout Mountain were down in the valley with the affected, bohemian youths, one of our favorite grocery check-out clerks...and...us! While watching the crowd, I wrote several short stories...in my mind....one rather reminiscent of Flannery O'Connor and the other more in keeping with Isaac Bashevis Singer!!! Perhaps, soon, I will actually write them down. Anyhow, I fixed a nice dinner and we had a good time at the concert.
Physically, I have been doing well, except for one week of an asthma exacerbation, which is much better now. I am gradually building my exercise routine back up after the last treatment. The past 3 weeks have been very itchy!!!! Lots of flares in my remaining granulomas and a generalized itchy rash with increasing vitiligo on my stomach and lower back. Can't believe scan time is already creeping up, as they will be done on 2/24 as prep for the next anti-PD1 infusion in Tampa on 3/2. As far as we can tell all other members of the peptide/MDX 1106 trial at Moffitt continue to do well. We did learn that the final cohort of resected, 10mg/kg folks has begun. Brent says that all info on anti-PD1 has completely dried up. This is probably related to the many new trials that have begun in multiple sites in the US and even in the UK. While that is a good thing...the silence is a bit frustrating.
May you buy your bread only from bakers who are nothing at all like Gimpel the Fool! - c
Work has been hard. Pediatrics in winter is always a challenge. The loss of one of our doctors has made it mentally stressful and caused the need for more work to implement changes in all sorts of things that may not even seem readily apparent. I was happy to help our amazing office staff and Dr. R. plow through the things we needed to do. However, it has created long days. Yesterday, one of the nurses asked, "Did you leave your car here overnight on Monday?" I told her no, looking puzzled. "It was just here so late!" Then I remembered. I had been going over the NP protocols after the patients were gone. So....it has been a number of extra hours. Next week, coincidentally, we will begin training two new NP's we had already hired. There will be a bit more work connected with that, so..... I am wishing for the sun. It has been very rainy and cloudy here. But, even on sunny days I leave home in the dark and return long after the sun has set. Oh, well...this too shall pass. I still love the nurses and doctors I am lucky enough to work with and the kids brighten all my days.
Brent surprised me last week with tickets to the Chattanooga Symphony for a concert of pieces by Ravel. They included: Pavane pour une infante defunte, Rapsodie Espagnole, and, of course, Bolero. It was an interesting group of attendees!!! We saw floor length furs, smelling ever so slightly of moth balls, alternating with, tight, minimal cocktail dresses on a really chilly night. The octogenarians of Lookout Mountain were down in the valley with the affected, bohemian youths, one of our favorite grocery check-out clerks...and...us! While watching the crowd, I wrote several short stories...in my mind....one rather reminiscent of Flannery O'Connor and the other more in keeping with Isaac Bashevis Singer!!! Perhaps, soon, I will actually write them down. Anyhow, I fixed a nice dinner and we had a good time at the concert.
Physically, I have been doing well, except for one week of an asthma exacerbation, which is much better now. I am gradually building my exercise routine back up after the last treatment. The past 3 weeks have been very itchy!!!! Lots of flares in my remaining granulomas and a generalized itchy rash with increasing vitiligo on my stomach and lower back. Can't believe scan time is already creeping up, as they will be done on 2/24 as prep for the next anti-PD1 infusion in Tampa on 3/2. As far as we can tell all other members of the peptide/MDX 1106 trial at Moffitt continue to do well. We did learn that the final cohort of resected, 10mg/kg folks has begun. Brent says that all info on anti-PD1 has completely dried up. This is probably related to the many new trials that have begun in multiple sites in the US and even in the UK. While that is a good thing...the silence is a bit frustrating.
May you buy your bread only from bakers who are nothing at all like Gimpel the Fool! - c
Subscribe to:
Posts (Atom)