Hope all of you are having an enjoyable weekend. Saw the neuro radiologist yesterday and got blood drawn for the HLA typing as well. No new info. Passed another neuro check...(FYI to those of you who doubted my capacity to do so before all this!!!) Asked Brent ahead of time if I could mess with the doc by demonstrating a lisp and a limp...but the donkey looked a little distressed and said he'd rather I didn't. It's hard to have fun and cancer at the same time!! Anyhow, I've been cleared by all my docs, except the one I live with, (and my pulmonologist, I guess) to try to restart any exercise I feel like I can do. So...today I took a sort-of brisk 2 mile walk with Brent and Rosie (after they had run 4 and 5 miles respectively!!) and did manage to jog about 1/4 of a mile as we returned home. Sounded like a wheezy freight train, but I managed.
We're making pizzas this evening. Brent is making the dough in the bread maker and Rosie and I are responsible for the rest.
Have a great weekend. Love to all - c
Saturday, May 29, 2010
Thursday, May 27, 2010
Discharged from thoracic surgeon!
Had my follow-up appt with the thoracic surgeon today. Had a good chest X-ray and SaO2 was 100%! He thinks the cough (which is getting better) is due to irritation from the sutures and the healing process in the bronchus. I will be seeing the pulmonologist next week who will be really the one to ask more about all that. But, the surgeon thought I was doing well. Wants a copy of the PET/CT when I get it and call if I need anything else.
Also have the evaluation of my tumor (or at least part of it) in process to see if there is a DNA match that is needed for some of the new drugs currently in study. Don't know how long that takes, but there you have it. Will also be having some HLA typing done with the blood work in July because certain types have a better outcome with some immunotherapies.
Feeling better still. Have both kids ready to go back to school in the fall. Some of Fred-o's return items just had to be trashed...after 2 years in a dorm...you see what I mean.
Planning on a lazy weekend. Hope it is a great one for all of you. Love always - c
Also have the evaluation of my tumor (or at least part of it) in process to see if there is a DNA match that is needed for some of the new drugs currently in study. Don't know how long that takes, but there you have it. Will also be having some HLA typing done with the blood work in July because certain types have a better outcome with some immunotherapies.
Feeling better still. Have both kids ready to go back to school in the fall. Some of Fred-o's return items just had to be trashed...after 2 years in a dorm...you see what I mean.
Planning on a lazy weekend. Hope it is a great one for all of you. Love always - c
Wednesday, May 26, 2010
Tuesday, May 25, 2010
I finally figured out why...
...I hadn't been feeling well! As signs and symptoms progressed I realized I had a UTI, thanks foley catheter!!!! But after being tested and treated I am feeling much better. I guess a UTI is kind-of a relief compared to some other options...so.....
Anyhow, today was a good, though busy day. Got Rosie set up to go to her GA tech orientation in July with all her papers in order. Fred-o took care of the yard while Rose and I went to her initial visit at the oral surgeon so she can get all 5 of her wisdom teeth out in June. Plus, did a few errands she needed to take care of.
Managed to do my 15 minute elliptical workout with 315 "calories" burned, so I was proud.
As someone with 16 surgical scars, here is my new favorite paragraph from a book: Little Bee, by Chris Cleave
"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
Love you. c
Anyhow, today was a good, though busy day. Got Rosie set up to go to her GA tech orientation in July with all her papers in order. Fred-o took care of the yard while Rose and I went to her initial visit at the oral surgeon so she can get all 5 of her wisdom teeth out in June. Plus, did a few errands she needed to take care of.
Managed to do my 15 minute elliptical workout with 315 "calories" burned, so I was proud.
As someone with 16 surgical scars, here is my new favorite paragraph from a book: Little Bee, by Chris Cleave
"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
Love you. c
Sunday, May 23, 2010
Busy day, lazy day...
Friday was a busy day for me. :>) Did my 15 minute elliptical with me best effort so far. Had an appt with the oncologist. More of a discussion than examination. There are no clinical trials that I currently qualify for since you have to have "measurable disease" to enter them. Which, hopefully, I do not have. Frankly, I'm not desperate enough at this point to even wish to participate in a trial...since you have to remember that they all have at least 2 arms...with some people getting the "good" drug and other arms getting a less effective drug or placebo. Also, there is no real adjunctive care that is advised for me currently. I could do interferon, but my oncologist doesn't recommend it and I don't want it. So...it is more of a time to try to get strong and watch and see. To that end, I have a brain MRI and PET scan scheduled for July 19 and will be having those about every 3 months.
That evening, Brent and I had dinner with dear friends. It was delicious, fun, and nice to get out of the house!!! Thanks guys!
Yesterday, I was rather tired. I just rested with the kids while Brent worked!! When he was rounding in the nursery at Erlanger, he ran into my pulmonologist who asked after me and reassured Brent that all my current coughing was to be expected at this time in the recovery process. (I've had a dry obnoxious cough for the past couple of weeks...thank goodness it wasn't this bad when my chest was so sore right after surgery!!) Anyhow, I will be seeing him in person next week. This week I am seeing the thoracic surgeon on Thurs and the neuro radiologist on Friday.
Tried to do the elliptical yesterday, but stopped after 3 minutes. We'll see what I do today!!! love to all - c
That evening, Brent and I had dinner with dear friends. It was delicious, fun, and nice to get out of the house!!! Thanks guys!
Yesterday, I was rather tired. I just rested with the kids while Brent worked!! When he was rounding in the nursery at Erlanger, he ran into my pulmonologist who asked after me and reassured Brent that all my current coughing was to be expected at this time in the recovery process. (I've had a dry obnoxious cough for the past couple of weeks...thank goodness it wasn't this bad when my chest was so sore right after surgery!!) Anyhow, I will be seeing him in person next week. This week I am seeing the thoracic surgeon on Thurs and the neuro radiologist on Friday.
Tried to do the elliptical yesterday, but stopped after 3 minutes. We'll see what I do today!!! love to all - c
Thursday, May 20, 2010
Great Visit...
Had such a nice visit with my baby sister, Kik. She is back on her way to Houston now. We lazed about and talked. Fred, Rose, Zeno and Kik did take me on a walk (where I used to run!!) so that I could see the Mountain Laurel blooming down near a creek. It was really pretty. If I had waited much longer I would have missed them. But they were very nice. All my chaperons were worried about me, but I took breaks to catch my breath. It was a work-out, but I am glad I did it. Pain is pretty managable. If I could quit coughing and wheezing, I'd be all set!!! :>)
Hope all of you and yours are doing well. Love to all - c
Hope all of you and yours are doing well. Love to all - c
Monday, May 17, 2010
Monday, Monday....
Hope you all had a good Monday! Did my elliptical for 10 minutes and 207 "calories" yesterday. Today my personal trainer had me work in my flower beds and with my roses a little...but no elliptical, saying that the yard work was enough for today. Aggravating to admit she is right. Still get rather short of breath if I laugh, talk , or move about very much. Anyhow, she has created a new program for 15 minutes that I am to start tomorrow. So, we'll see how that goes...
My sister, Kik, is coming in to see me tomorrow and will stay until Thursday, so that will be fun. It's nice to have both the kids home with me as well...they always know how to make me laugh.
Hope things are coming up roses for each of you. Love - c
My sister, Kik, is coming in to see me tomorrow and will stay until Thursday, so that will be fun. It's nice to have both the kids home with me as well...they always know how to make me laugh.
Hope things are coming up roses for each of you. Love - c
Saturday, May 15, 2010
Graduation Day...
She did it!! Brent, Fred and I are so proud of Rosie!! The deed is done and she did it well. Way to go my girlie girl!
Fred is back home and that is always fun for me. He gets me into trouble, but always helps me get out of it!!
Took the day off from my elliptical...figured walking to McKenzie Arena and such, as well as a short walk with Brent and the dogs, was enough today. So glad I was able to make it to this day...and on my own power!
Hope all of you are having a good weekend. Love always - c
Fred is back home and that is always fun for me. He gets me into trouble, but always helps me get out of it!!
Took the day off from my elliptical...figured walking to McKenzie Arena and such, as well as a short walk with Brent and the dogs, was enough today. So glad I was able to make it to this day...and on my own power!
Hope all of you are having a good weekend. Love always - c
Thursday, May 13, 2010
Why I'm lucky......
Luck is a funny concept. I'm not sure what it means. I tend to believe people create their own luck....but that would mean I am responsible for my melanoma as well. I do know that some things happen in the most beautiful possible way, and in that way, I have been far more lucky than I deserve. I have been given incredible gifts in my life. Pardon me as I indulge in them here. With love - c
Spring flowers
My little yard helpers have been working so hard in my garden this spring that I wanted to share the flowers of their labors! Have a beautiful day. C
Wednesday, May 12, 2010
Comic relief...sort of
So the news of my condition has spread like wild-fire through the hallowed medical halls and offices of Erlanger...so much for HIPPA wippa!!! Not that I've kept anything a secret by any means, but it's just interesting how people you barely know rush to those you're close to, with, "Have you heard.....?" Which of course THEY have because you actually TOLD them. Anyhow, a woman physician who is an acquaintance of Brent's (and whom I have never technically met, though I did hear her lecture once, and doesn't know me anymore than Adam's housecat....AND...who has always weighed about double what she should....WHICH I KNOW IS NONE OF MY BUSINESS AND NOT SOMETHING I WOULD NORMALLY MENTION!!!, but you will see the significance of momentarily) came up to Brent yesterday. After, "Oh, my goodness....." She said, "Has your wife considered utilizing a healthful diet with lots of fruits and vegetables?"
WHAT? ?QUE? ?COMO? What the....?
Does this doctor of very little brain think I could have passed on melanoma had I just had a few more servings of carrots? Healthful diet? Does anyone eat more fruits and vegetables than I do, I ask those of you who share my table at home and "in the lunch room"?
You just have to laugh...right after you scream...I suppose. I did consider checking into Erlanger with an alias. I would have liked to have been admitted as Te Sura San (?sp), the main character in a Japanese fairy tale I had when I was a little girl. (My sisters and I would play pretend games as kids and we would be Cinderella, Snow White and Te Sura San for our adventures.) But, I didn't have a Te Sura San ID. :>)
Did my exercises today and managed to do 175 "calories" in the 10 minute workout. So I am proud of that.
Hope you are having a good day. Thanks for always keeping it real. With love - c
WHAT? ?QUE? ?COMO? What the....?
Does this doctor of very little brain think I could have passed on melanoma had I just had a few more servings of carrots? Healthful diet? Does anyone eat more fruits and vegetables than I do, I ask those of you who share my table at home and "in the lunch room"?
You just have to laugh...right after you scream...I suppose. I did consider checking into Erlanger with an alias. I would have liked to have been admitted as Te Sura San (?sp), the main character in a Japanese fairy tale I had when I was a little girl. (My sisters and I would play pretend games as kids and we would be Cinderella, Snow White and Te Sura San for our adventures.) But, I didn't have a Te Sura San ID. :>)
Did my exercises today and managed to do 175 "calories" in the 10 minute workout. So I am proud of that.
Hope you are having a good day. Thanks for always keeping it real. With love - c
Tuesday, May 11, 2010
Neuro surg visit....
Hey everybody!
Had such a nice day with the Rose-bud. She did some yard work for me and ran the monster while I, yes I, did the elliptical...very slowly!!, and only for 10.5 minutes...Why 10.5 you might ask? Because, I wanted a good number to report!! :>) Meaning, my machine reports calories burnt over a certain period of time based on how fast you go and how much resistance you have set (not that I have any belief whatsoever that they represent real calories) but it is a unit of measure that I can use to compare my performance with. So, before lung resection, and after brain zappage, I was doing almost 400 calories in 15 minutes. My sad little ass today managed to get 150 (aka "GOOD" number) done in 10.5 minutes!!! No matter, I am pleased I did it. I'll hang there for a while until my personal trainer tells me what to do next. Didn't really hurt any worse than just sitting. Got a little winded. We'll see how it goes. So... Keep rooting for the home team!!!
Anyhow, after that mammoth exertion, Rosie took me out to lunch to her favorite hotdog place. We got her some art supplies she needed and puttered about in Hobby Lobby. WHAT a WEIRD store. Then we met Brent at the Neuro surg office.
Rather anticlimactic. No MRI...he will do that in about 12 weeks. Really only did a craniofacial check to see if he ruined me. Passed. Talked with poor Brent (aka donkey still on edge) about recurrence, effectiveness, seizures, etc. All answers served to reassure the donkey, I mean my sweet Bent. I'm an incredibly healthy person with crap...which has been zapped and removed. Therefore, I am theoretically crap-free and as such have a good prognosis currently and in regard to recurrence. He stated that he had not put me on antiseizure meds, because my risk had been so low. (They do use them prophylactically sometimes.) And, my risk of seizure decreases daily unless I should do something else weird in my head. Brent even asked about whether the surg had any concerns about my commute to work once I return and he did not.
So....there you have it...my day in a blog nutshell...and no I am not medicated as I write this....only ibuprofen this morning and just now!!! :>)
Love you all SO much. C
Had such a nice day with the Rose-bud. She did some yard work for me and ran the monster while I, yes I, did the elliptical...very slowly!!, and only for 10.5 minutes...Why 10.5 you might ask? Because, I wanted a good number to report!! :>) Meaning, my machine reports calories burnt over a certain period of time based on how fast you go and how much resistance you have set (not that I have any belief whatsoever that they represent real calories) but it is a unit of measure that I can use to compare my performance with. So, before lung resection, and after brain zappage, I was doing almost 400 calories in 15 minutes. My sad little ass today managed to get 150 (aka "GOOD" number) done in 10.5 minutes!!! No matter, I am pleased I did it. I'll hang there for a while until my personal trainer tells me what to do next. Didn't really hurt any worse than just sitting. Got a little winded. We'll see how it goes. So... Keep rooting for the home team!!!
Anyhow, after that mammoth exertion, Rosie took me out to lunch to her favorite hotdog place. We got her some art supplies she needed and puttered about in Hobby Lobby. WHAT a WEIRD store. Then we met Brent at the Neuro surg office.
Rather anticlimactic. No MRI...he will do that in about 12 weeks. Really only did a craniofacial check to see if he ruined me. Passed. Talked with poor Brent (aka donkey still on edge) about recurrence, effectiveness, seizures, etc. All answers served to reassure the donkey, I mean my sweet Bent. I'm an incredibly healthy person with crap...which has been zapped and removed. Therefore, I am theoretically crap-free and as such have a good prognosis currently and in regard to recurrence. He stated that he had not put me on antiseizure meds, because my risk had been so low. (They do use them prophylactically sometimes.) And, my risk of seizure decreases daily unless I should do something else weird in my head. Brent even asked about whether the surg had any concerns about my commute to work once I return and he did not.
So....there you have it...my day in a blog nutshell...and no I am not medicated as I write this....only ibuprofen this morning and just now!!! :>)
Love you all SO much. C
Monday, May 10, 2010
Reading this...
...has probably become about as interesting as watching paint dry!! However, I guess that beats some alternatives.
Watched Rosie work in the yard and puttered about a bit before it started raining. Helped her go through her closet a little and walked about a tad more. However, my little person trainer has created a 10 minute elliptical workout for me that I am to start tomorrow, so things may get more exciting.
We are going to have a little date tomorrow. I have an appointment with the neuro surgeon at 4pm. So Rosie is going to take me to lunch at Good Dogs (near Coolidge) and do a few errands before she takes me to the appt where Brent will meet us. He is under the impression that I will have an MRI of the brain at the appt. I have no idea. By the time they were finished with the radiation and taking off the halo I was not particularly attentive to any discharge instructions, so Brent probably has a far better grasp of all that than I. At any rate, I will keep you posted with what we find out.
Hope things are going well for each of you...with love - c
Watched Rosie work in the yard and puttered about a bit before it started raining. Helped her go through her closet a little and walked about a tad more. However, my little person trainer has created a 10 minute elliptical workout for me that I am to start tomorrow, so things may get more exciting.
We are going to have a little date tomorrow. I have an appointment with the neuro surgeon at 4pm. So Rosie is going to take me to lunch at Good Dogs (near Coolidge) and do a few errands before she takes me to the appt where Brent will meet us. He is under the impression that I will have an MRI of the brain at the appt. I have no idea. By the time they were finished with the radiation and taking off the halo I was not particularly attentive to any discharge instructions, so Brent probably has a far better grasp of all that than I. At any rate, I will keep you posted with what we find out.
Hope things are going well for each of you...with love - c
Sunday, May 9, 2010
Happy Mother's Day!!!
What a beautiful, breezy day for Mother's Day. Hope it is wonderful for each of you.
Yesterday was a day of firsts: I actually wore clothes, rather than PJ's. I was narcotic free...ibuprofen is helping with my pain very well. And, I was able to lay down in bed, rather than be propped up on strange piles of pillows. (You have no idea how sick my butt and lower back are of me!!!)
So, with all that, Momma and Daddy decided that I was well enough to leave for now, since I have (rather strict, I have to say) constant supervision from Brent and Rosie for the coming days, and by the time Rosie has to go do other things Fred-o will be back in town.
Rosie is planning a training program for me. It will include short walks that gradually increase in speed and duration as well as some work on the eliptical, so that I can increase my respiratory capacity without the jarring of running. Not sure when I have to toe the line, :>), but I think it is a good way to approach my recovery.
Love to all. c
Yesterday was a day of firsts: I actually wore clothes, rather than PJ's. I was narcotic free...ibuprofen is helping with my pain very well. And, I was able to lay down in bed, rather than be propped up on strange piles of pillows. (You have no idea how sick my butt and lower back are of me!!!)
So, with all that, Momma and Daddy decided that I was well enough to leave for now, since I have (rather strict, I have to say) constant supervision from Brent and Rosie for the coming days, and by the time Rosie has to go do other things Fred-o will be back in town.
Rosie is planning a training program for me. It will include short walks that gradually increase in speed and duration as well as some work on the eliptical, so that I can increase my respiratory capacity without the jarring of running. Not sure when I have to toe the line, :>), but I think it is a good way to approach my recovery.
Love to all. c
Friday, May 7, 2010
Happy, happy birthday...
...to my beautiful Rosie Roo!!!! Can't believe my baby girl is 18!! Had a good day today. So happy to get to have the day with my girl!! Her grandparents got her a chocolate on chocolate B'day cake and cooked her supper...a regular party! Her brother, aunts and friends have sent her sweet birthday wishes...it was great.
My daddy says I was the "perkiest" I've been since surg today. All things still in slow motion, but I'm walking a bit. Rosie is planning a recovery regimen that we will start gradually and move through.
Hope each of you had a great day as well. Love to you all. C
My daddy says I was the "perkiest" I've been since surg today. All things still in slow motion, but I'm walking a bit. Rosie is planning a recovery regimen that we will start gradually and move through.
Hope each of you had a great day as well. Love to you all. C
Thursday, May 6, 2010
How beautiful...
...what a beautiful day, and yesterday evening the most beautiful basket of lavender hydrangeas were delivered! They are gorgeous. I am already plotting where I'll plant them when they seem tired of being indoors with me. They are so pretty. Thanks to all of you at Peds Care for brightening my day!!!
Much better night last night, though I keep poor Brent hopping arranging my pillows and such. Feeling better today than any day so far! Am about to take a walk in the yard with Momma and Daddy.
Love to all..c
Much better night last night, though I keep poor Brent hopping arranging my pillows and such. Feeling better today than any day so far! Am about to take a walk in the yard with Momma and Daddy.
Love to all..c
Wednesday, May 5, 2010
New Day
Read all your posts just now!! You all know how to make me smile. I'm being good and still. Bit of a rough night last night. Don't know if I'm just missing my morphine drip or just dealing with more muscle soreness as is to be expected...but anyhow... Brent went off to work today. Rosie is about to go to school and Momma and Daddy are headed this way.
No details yet on the exact plan for testing my tumor for the DNA stuff. Brent is on it as you might imagine and has already given marching orders to pathology to save it for at least one, if not three tests of that sort. There is a big oncology conference in June where new data and meds are reported on and released. He and my oncologist are anxiously awaiting that info and hoping that some of those types of meds will be available to me should I need them. However, if there is no measurable tumor, the meds are not needed until there is. If that makes sense?
Thanks for all your sweet notes and warm wishes. I'm all set for another day of vegging out!
Love you all. C
No details yet on the exact plan for testing my tumor for the DNA stuff. Brent is on it as you might imagine and has already given marching orders to pathology to save it for at least one, if not three tests of that sort. There is a big oncology conference in June where new data and meds are reported on and released. He and my oncologist are anxiously awaiting that info and hoping that some of those types of meds will be available to me should I need them. However, if there is no measurable tumor, the meds are not needed until there is. If that makes sense?
Thanks for all your sweet notes and warm wishes. I'm all set for another day of vegging out!
Love you all. C
Tuesday, May 4, 2010
I'm BACK............
Sitting here with Momma this morning checking out all Rosie's posts and your comments. How nice you all are to keep up with my craziness. Rosie was pretty precise. (Can't think where she gets that!!) Upper lobe out. Only had to take two bits of the bronch to get clear margins. Got rid of all tubes (jugular, chest tube, epidural, foley, leads, etc.) yesterday and got home around 2:30 pm. Got a linear blister from pressure of the epidural tubing and dressing on my back, but it is already healing well. Have three incisions, all healing well, to right slightly anterior the axillary line from the surg site, scope site and the tube. Head is healing well also...just a bit of residual swelling remains, no longer looking so much like a Shar-pei!! Have to tell you....wasn't familiar with a "walking epidural", but they are SWEET!! They have morphine in a continuous drip so you don't get knocked out when they dose you orally or IV and then the wearing off you experience with those unit doses. Provides a much more continuous coverage which was nice and I think essential to my getting home as soon as I did. Does cause some itching, but overall = worth it!! Had good enough pain coverage last night with some lortab...so now I just have to get well.
But really the best news is that Brent got the path report yesterday evening, and NONE of the nodes that they took during surgery were positive for melanoma on the microscopic exam. That was a tremendous relief. The surgeon had said that they "looked" fine and the PET had not lit up with anything else. But we were sure glad to get that report!!!
Rosie is off taking her proctored Calculus final. (For which a photo ID was essential!!, Bless her!) Fred is back in K'ville for his final week. Brent will probably go back to work tomorrow, but Momma and Daddy will be able to help me out here as will Rosie who really only has one more exam on Thursday to deal with.
Much love to you all. Love, C
But really the best news is that Brent got the path report yesterday evening, and NONE of the nodes that they took during surgery were positive for melanoma on the microscopic exam. That was a tremendous relief. The surgeon had said that they "looked" fine and the PET had not lit up with anything else. But we were sure glad to get that report!!!
Rosie is off taking her proctored Calculus final. (For which a photo ID was essential!!, Bless her!) Fred is back in K'ville for his final week. Brent will probably go back to work tomorrow, but Momma and Daddy will be able to help me out here as will Rosie who really only has one more exam on Thursday to deal with.
Much love to you all. Love, C
Monday, May 3, 2010
Coming HOME!
She has had the chest tube taken out, and is probably coming home this evening.
So YAY!
And I also got a new drivers license.
Well that good news is all I need all day.
Rosie
So YAY!
And I also got a new drivers license.
Well that good news is all I need all day.
Rosie
Sunday, May 2, 2010
Doing Well!
Sorry I didn't post yesterday, its so crazy around here!
Fred came home yesterday, and we went to see her, and she was sitting up and talking and smiling, so she is doing well. Her lung has already expanded to fill the empty space from where the lobe was. She is still printing and reading the blog too.
In other news, I lost my wallet. You know, just to keep things interesting.
Thanks for all of your continued support.
Rosie
Fred came home yesterday, and we went to see her, and she was sitting up and talking and smiling, so she is doing well. Her lung has already expanded to fill the empty space from where the lobe was. She is still printing and reading the blog too.
In other news, I lost my wallet. You know, just to keep things interesting.
Thanks for all of your continued support.
Rosie
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