The Worst Part is Over

So, I am relieved.

The surgery went fairly well, and a clean margin was made so that only the upper right lobe was removed, which was the best possible scenario. She is no longer on a ventilator, and I spoke to her too. She did sound a little wheezy, but what can you expect?

She is doing really well so far, and is going to try to walk about tomorrow morning.

Good night all.

Rosie

Update on the surgery:

So far everything appears to be going to plan. At this point the diseased lobe has been removed, and they are testing the 'tube' to see if it is clean.
I am hopeful that everything will be alright.

Rosie

Today is...

a big day.

Momma got up early this morning, and went down to the hospital. At this point surgery has started, and appears to be going well.
The doctors have examined the lower parts of the lung, and are probably only going to take out the top lobe.

So everything is going alright.

Rosie

Bags are packed and I'm ready to go...

...I guess! Got a few errands done today. Rosie and Momma say I look Chinese with my eyes swollen...I think I just look weird. But all those holes in my head are feeling better. I'm on rather high dose prednisone to decrease any chance of brain swelling after the radiation. Always wanted to be one of those people who clean the house and feel totally jazzed while on it, but I just end up feeling really tired. My sister says I'm normally up running around like a crazy person cleaning the house and stuff so it figures that I would go the other way.

Noticed an interesting occurrence Tuesday: On our way home after the radiation we drove through rain, hail, and sun...some of them all at the same time. We went to the hospital in a horrible snow and ice storm on our way to my first surgery. (I thought we were going to die in a crash before we ever got there.) And on one of my last procedures Bush was in town, and we almost didn't make it to the hospital on time because all the roads were barricaded closed. So, who knows what we will run into tomorrow??!!!!!!

Thanks to all of you for your love and support during all of this. Rosie will be taking over the blog for now.

Looking forward to talking to you more later. You all know I don't like to be still or quiet. Love to all. C

Resting up

Feel a bit beat up today. Head sore for obvious reasons. Back and neck sore, Brent thinks from sitting in one chair in one position all day. Oh, well...better than surgery. I'd still be in the hospital. Wouldn't Madame Curie be proud of what she started? Pretty amazing when you think about it.

Just did about the house, walked the dogs, while Brent hovered. He's been a real sweetie...as always.

Looking forward to more drugs and better sleep tonight. Love to all. C

Home Again

Well, that's done. OK, Tammy B., either you were being uncharacteristically sneaky and withheld complete, detailed info, or your Daddy was one tough dude!!! I'm in a rather beat up state with the two forehead sites swollen and oozing...Brent is about to try to get them dressed. I'm having the most trouble with the site at the right temple, because either the injection or the screw itself hit a nerve and I had the most wicked numbness, like the kind you have with major dental work, over my entire right side of my face, that then changed over to some rather fantastic TMJ pain, so, I'm hoping that will wear off soon. But, I got home, ate some soup, took some major drugs, and as soon as Brent can patch me up, I'm off to bed.

On the good side, I may have already said, the CT was as expected with no additional lesions and the neuro radiologist felt he had a great plan to zap it with high dose radiation and GET RID OF IT. I just hope it looks worse than I do!! :>)

Thanks for all the love sent my way today. It is very real to me. Love to all. c

New form of botox

I just realized, while not exactly pain free or attractive, I have gotten a form of botox. I can't raise my eyebrows!!! You never know....could be the coming thing!!! Just keeping you up to date! :>) c

Brain Squeezers!!!

Ok, Marty. I absolutely demand that the AAP take up the fight against the use of brain squeezers (the so-called decorative head bands parents place on, frequently bald, female babies). Such unjust exposure to that level of compression is inappropriate at any time and could certainly cause incredible flashbacks should they ever have to undergo the application of a halo.

Yea, well....I'm in my room, post halo application and first CT scan. It's pretty much yuck. Having the halo applied was less than fun. But, that is done now.

Brent wants me drugged, but they don't want me to put pressure on the halo, so laying down isn't really an option, and if I take drugs, I WILL be laying down. Still set for radiation this evening around 5-6. Got pretesting lab done via the IV they started here, so that was nice. Brent took all their questions for me so, we are good to go on Friday as well.

One ray of light, Brent spoke with the radiologist group who evaluated the PET and MRI in the first place, just to get their take on the tumor's distance from the right main stem. He was very encouraging, stating that per his reading of the scan there is at least 4-6 cm between. That would be really great if that is the case. Of course, we won't know for sure until the surgeon gets in there himself.

Broth sucks. Jello cubes are weird. Ice chips and lemonade are ok. IV going at 100ml per hour = many trips to the bathroom.

Love you all. C

Hopeful news

Brent spoke with my pulmonologist this am, to let him know the plan. When Brent mentioned how concerned with the tumor's proximity to the right mainstem the thoracic surgeon had been based on my PET, my pulmonologist was very surprised and adamant that the tumor was a good distance away. He should know since he was down there with a scope!! I hope so. I would like to avoid a pneumonectomy if at all possible. The pulmonologist was going to speak with the surgeon today about that as well as maintenance lung meds he wants me on....So, cross your fingers!

My girls

 

 

 

 

My sisters, Rosie, and Karm with cards from Ruthie's 5th graders!!

The Weekend

Momma and Daddy were up visiting until Sat, when my sisters flew into Atlanta, Ruthie from Virginia and Kik from Houston, and drove up. It was really good to see everyone. They are all back home, safe and sound now.

I am taking Rosie for her physical today so that we can get her medical forms sent in to Ga Tech. She was a great hostess all week and finished all her calculus work and last exam. She's finishing her last paper for English and then just has to study for her two remaining finals.!! And, yes, she is going to be in the National Honor Society with the proper cords at graduation.!!

Fred-o is finishing up his classes and is planning to come in this weekend before finals week.

I have to be at the hospital tomorrow at 0800 for my radiation treatment. Brent will contact everyone after the halo is installed and the first scan is done and we are in our "waiting room". Not sure how long that will take, but.... I won't be having the radiation until around 5-6pm, after which they will remove the halo and I'll go home.

Brent is staying home with me Wed and Thur, because of the risk of seizures he felt he was the man for that job. He is taking off, of course, during my hospital stay and once I am stable at home he will probably go back to work with Ruth, Kik, Momma and Daddy doing a kind-of tag team system to help us out. Momma and Daddy will be in town while I'm in hospital and I think Ruthie's next, then Kik. Of course the kids will be finishing up school and will be around as well.

EVERYBODY has been so great. I really appreciate each and every one of you for caring, for being here, for making me laugh, and for supporting my family. You have no idea how much that means at a time like this.

Love to all. C

It's a go

Brent spoke to the neuro surgeon this am. The neuro surg had already spoken to the lung surg. They both are fine with the Friday schedule for the lung resection following the Tuesday brain radiation. So.....I will have my pre-testing stuff done on Tues while I am in hosp for the radiation. I asked Brent if I was going to have to trot my happy haloed self down to pre-testing and he said that they would be coming to me.....well, stranger things have happened. :>)

Just got back from a final (before surg) meeting with my oncologist. Plus, I spoke on the phone with the surg who did all my other surgeries, whom I really like and respect but doesn't do brains or lungs. The only question, that no one can really answer, is: If you get in there to take the lobe, and have to keep taking and taking bits from the bronch in order to get cancer free margins, to the point that I end up with a pneumonectomy, does that mean I have so much disease present that I probably shouldn't have bothered with the surg in the first place? Both tried to field the question, as had the thoracic surgeon, but the bottom line is: they don't know. Melanoma is weird. I could remove this and be cancer free for years or weeks. Nobody can say for sure. But, all three of them said they would go for it. If I don't, I have no chance at all.

So........there you have it. Both procedures will be at Erlanger. I am so appreciative to all the docs on my team for working so hard to talk to each other and coordinate all this. I know that doesn't happen easily or at all in some cases and I know that I have one very special doc to thank for much of that!!

Momma and Daddy are coming back up to the house in a few minutes and set me up with a South Alabama fish fry...fresh caught cat fish, coleslaw, hush puppies....make you want to slap yo Momma. (See Tammy B., one more meal you would just love to share!!!!)

Love to all. C

Thoracic Surg Visit

Saw the thoracic surgeon yesterday afternoon. He was nice, very direct, dealt with Brent, who is a bit of a donkey on the edge at this point, very well. I liked him. A lobectomy is my best choice. He gave us all the worst case scenarios, which of course, he must. He will do a less invasive type of the surg by making incisions beneath my right arm and using scopes, however, if anything goes south he will convert to the old time method of an incision beneath my right shoulder blade and go from there. He said it shouldn't be too hard on me because my lungs were in great shape according to my PFT's and I was skinny! (Yeah for someone being happy I'm skinny!!!) The most disturbing point he brought up was his concern that the tumor, while in a branch off the right bronch, is very close to the right main stem. He will send frozen sections from the final incision removing the lobe from the right bronch to pathology while I am in surg, and has to keep cutting until he gets clear margins. If he has to cut too much, I will have to have the entire right lung removed because he will not have enough of the remaining bronch to attach the lower lobes to.

At any rate, we are on for the lobectomy for Friday and the brain radiation on Tuesday. We just have to confirm with the brain guys that that window is sufficient. They indicated that it would be when Brent spoke with them the other day, but he has already put in a call to them just to make sure this morning.

Love to each of you. C

Phone tag

Well after everybody calling each other back and forth, Brent finally spoke to most of the players after they had all spoken with each other, yesterday.

The oncologist: Brent spoke with her yesterday. She had spoken with Sousman (?sp); the Vandy melanoma guy. He agreed with all that we were planning to do and thought it was the best plan. The only adjunctive therapy he could offer at this time was interferon and he did NOT recommend it. She had spoken to the brain guys and they were all on the same page as well. Brent has questions for her...some she is going to have to research (though my money is on Brent getting there first...not that I don't hold her in the highest esteem.....it's just he's a little more, hmmmm.....intensely focused, shall we say?!!) One is Curcumin (sp?), the concentration of the spice turmeric. (It's the stuff that make curry and yellow mustard yellow.....look on the bottle, you'll see! Food I know, other stuff, not so much!) Anyhow, there has been some evidence in scattered studies that it helps diminish tumor growth. Brent actually gave it to poor Ruff Ruff when he has his tumor. At least the Curcumin comes in a pill. Poor Ruff just had the turmeric in his food!! Anyhow, if you see me and I appear slightly yellow, smelling of curry, you'll know why! :>) He is also having her check out another drug, Timeron (sp?) that the neuro radiologist mentioned that he has had some positive results with. We are seeing her on Friday just as a close the loop, question and answer session.

Brain stuff: Brent spoke with the Neuro surg who had spoken with the neuro radiologist and with the other radiologist that he wanted to have look at my films. That radiologist was 90% certain that the brain blip is a met. So between speaking with both of them, the surg is also completely on board with treating the brain met with radiation as soon as possible....with the lung stuff being the only limiting factor. He answered a specific question I had, which was: How soon after the brain thing can I proceed with the lung thing? Answer: 3 days. I was sort of hoping, A: to get it all over with as soon as possible, and B: mask my misery after the brain thing with anesthesia from the lung thing!! However, the risk of seizures after the radiation is highest in the first 2 post radiation days. Not that they think I am high risk for seizures....in fact, they think my risk is very small because of the location of the lesion and because of its small size. But, the risk is there. I'm still on the schedule for Tues.

Lung stuff: Did my eliptical yesterday...with a very good time, if I say so myself. Feels weird to exercise just now.....but, I figure I'd better keep things as shaped up as possible. Will see the thoracic surgeon this afternoon and see what he has to say and what his schedule it.

Momma and Daddy came in yeterday afternoon. It was great to get to see them. We'll be hanging out today. I just hate to have to upset everybody with all this mess. Brent is doing such an incredible job of juggling all the docs and all the info and passing it on to everyone, even though it hurts them to hear and hurts Brent to tell. I appreciate him (and I know Momma and Daddy do too!) so much.....

Rosie is taking her last Calculus test before the final. Wish her luck....like my little genius needs it. Fred is staying in touch from K'ville.

Will let you know what the surg says later.

Love to all. - c

Neuro Neuro who's got the neuro

Well, today we met with a neuro surgeon and neuro radiologist.

The surgeon was not certain the place in my brain was a met but maybe it was but maybe it wasn't.... We have 3 choices. 1. Watch and rescan in about 4 weeks. 2. Do actual surgery, guided with imagery, and cut it out...but he was against this because, since it is so small there is a chance he might not find it easily and then there's digging around and you know.... 3. Do very specialized radiation treatment to the spot now...or later. He was very positive that doing it just a bit later would be ok, because even if it doubled in size it would still be very treatable via that sort of radiation. He wanted to show my films to another radiologist to get his opinion and is supposed to get back with Brent after he does that. And he was to call the neuro radiologist, which he did.

We met with the neuro radiologist who was less hesitant about calling it a brain met. He was pretty adamant that it was, after all, that's what makes the most sense given the history and the appearance on the scans, even though it is so small it is hard to be definitive. Anyhow, he feels he can hit it. The radiation treatment is just as effective as surgery (per both doctors). It is a day long procedure. The side effects are minimal, since it is small. So....we are on the schedule for Tuesday. The limiting factor is the lung surg. We have yet to meet with the thoracic surgeon (our appt is for Thur at 5:30) and everyone agrees that the lung thing has to get gone and fast since it is what probably seeded to the brain in the first place. Everyone was very nice and are willing to keep me on the Tues schedule until I see the thoracic surgeons and see what we need to do there.

Comic relief for the day...Brent surreptitiously brought Reese Cups for me to have between MD visits. However, my loving genius stored them in his shirt pocket, so that when he got them out to give them to me...a mushy, chocolate bomb went off in his fingers and splattered his entire shirt with chocolate.

Cross your fingers for good scheduling options. It seems to me that I could probably do the brain radiation better now than later...since at this time I am pain and cough free. After a lobectomy it sounds more uncomfortable than it does on all the already obvious points.

Love to you all. - c

My Peeps

What a lucky girl I am! Friday afternoon, I ask for lunch, and Monday at noon...there it is and more. Chicken in every form and salad and fruit and Red Velvet Cake (with NO NUTS!!! Debra, you are the bomb!) and pies and cookies and brownies and cookie cake (from Tammy B, the number one pastry chef in the office) and a beautiful and delicious ribbon cake (one for lunch and one for the road!!!! You are so sweet, Anita, and eggs too!!....a woman of many talents!!!) and delicious flan straight from Puerto Rico and a beautiful, delicious fruit bouquet to bring home (you girls know me too well!!!) and even more that I am forgetting. There were wonderful ribbons with a "C" of bling on everyone!!! (Jenn H you are so creative and kind!!!) But most of all, it was a room filled with love and warm wishes for me, Rosie Roo and the rest of my family. It was as tangible as the air I breathe. It was good to see each of you and smile. I am grateful.

With love, c

Melanoma

It was with some misgiving that I gave "melanoma" credit in the title. I resent the time it takes from me and the sadness and worry it brings to those I love. I do not wish to give it any more attention than I must. However, it is the monster in the middle of the room, that will not be swept under the rug, and I have never been one to turn away from reality so there it is.

It's been a 7 year dance with the monster, beginning in 2003 when I was a student in the Pediatric NP program at UAB. I had a resection of the initial lesion, sentinel nodes removed, and after one of those was positive, an entire lymphadenectomy of the right axillae. It was a scary time, seeing specialists all over the country, fearing for myself and my children, then only aged 10 and 12. But, I got through it and with the support of many of you, took an incomplete on my course work for that semester and finished that work along with regularly scheduled classes the next semester, graduating with my class as planned, for which I owe a huge debt of gratitude to a group of wonderful professors at UAB. (When trying to thank one of them for all their work on my behalf, she replied, "What did you think we would do? The bottom line is: We're nurses!!)

Finishing my degree was one of the best decisions of my life. Being able to provide care for children as a nurse practitioner allowed me to fulfill a goal, brought peace and joy to my life, and has given me a group of friends ("My Peeps", according to Rosie) that I can't begin to imagine a life without.

In 2007 another lesion was deposited by the monster on my left arm. It was removed and though no nodes were positive, a lymphadenectomy was completed on the left axillae. While worrisome, it seemed like things were going to be ok.

Through all this time there have been all kinds of doctor visits, scans, and X-rays to monitor the monster. In November of 09 a tubular structure was noted in my right upper lung. Since I have asthma, it was determined that it looked nothing like a metastasis and so was followed with periodic films. It never grew, but it never got better either. So my oncologist referred me to a pulmonologist. He evaluated my lung function and asthma. Watched things for a while. But, finally decided I seemed too well to have the sort of mucus plug some asthmatics can develop, did a biopsy and this past Tuesday we learned it is endobronchial melanoma. On Wednesday there were more scans and an MRI if the brain. While no additional tumors were found in my body, a 4mm something, most likely a metastasis, was found in the right frontal lobe of my brain.

So, here we are....waiting to see neuro radiologists, neuro surgeons, and a thoracic surgeon this week. And I guess that buys the monster a place in the title. -c

Love

My life has been incredibly blessed with the love of my family and friends. You are all willing to overlook my flaws and forgive my failings, letting me bask in the knowledge of your love for me in times of joy and difficulty. Each and every one of you has a special place in my heart that nothing can ever change. Your love is my greatest treasure. -c

Life

A few months ago, as a writing "lesson" with Rosie, we both wrote an "essay" in response to: Tell me what you like. The following was mine.


I like moss and flowers and dogs.

I like laughing so hard my stomach hurts and tears roll down and everyone around you starts laughing too, even if they don’t know why.

I like beauty – but perhaps even more, an appreciation of beauty – like the guy with the orange vest and the weed whacker on the side of the road, purposefully leaving the daisies unscathed.

I like skies so blue that there is a stark contrast with the leaves of the trees, whether green or autumnal, that gives them an incredible brightness and definition not seen on other days.

I like lemons with their vivid yellow tang and fragrance.

I like the giggles of children.

I like warm smiles that mean, ‘I know you’.

I like soft beds with fragrant linen.

I like shoes.

I like travel – even airports – even now, with longs lines and ridiculous check points – because it means the start of new sights and sounds and adventures.

I like dinners with family and friends.

I like cooking. It is an artistic outlet with love and utilitarianism combined.

I like people who use blinkers – especially if they employ them before the turn.

I like picking fruit.

I like red cars.

I like music that makes me think, forget, and remember.

I like a phrase written with economy, beauty, and completeness.

I like the silhouette of the trees along the ridge, as I drive to work, in full leaf and in their stark naked winter sticks.

I like working hard and being happily tired.

I like ………life. -c

Chaotically Precise

I suppose the title deserves some explanation. A few weeks ago Rosie was talking about how Steinbeck described his characters in "East Of Eden" and decided to play with words to describe me. She settled on "Chaotically Precise". She has spent almost 18 years watching me whirl about, cooking 2 meals at once, rarely measuring anything, dashing off to do something else, jumping from one project to another, but in the end it all gets done...precisely as planned. Well, I don't know about all that, though the chaos and the whirling part is probably apt. And so...you are welcome to take my whirling and chaotic journey with me. - c

Why Blog?

Me...a blogger. Who would have thunk it? Rosie was the mastermind behind all this and I hope it will serve us all well. She feels this will be the most effective way to reach out to all my family and friends in one go and if there are times when I am not able, she can keep the posts coming for me.

I do welcome your comments here or via email. They have been so uplifting and supportive. I hear your voices as I read your words and it means more than you will ever know.

With love to you all, c