Regarding the new chemo: "GlaxoSmithKline is looking into the drug now." Translation: No sense holding your breath because I'm not sure how long these things take.
Mike has been having Optical Migraines frequently so they will be sending him for an MIR and an MRA.
That about sums it up.
Wednesday, April 28, 2010
Tuesday, April 27, 2010
Mike has a Doctor's appointment today 04/27/10. Hopefully I'll have "something" good to post about his appointment tomorrow.
In other news…Mike and I recently asked ourselves what's most important in our lives. After our faith, family, friends and the girls we decided the house, work and bills fell short and last on the list. Don't get me wrong...LOVE love LOVE our house, but thinking reasonably and into the future what we want may not be what we need. Our plan: Minimize our living expenses, pay off dept, work less and enjoy the finer things in life. How will we spend our time? Hopefully, amongst other things by next year we will be in the full-time service together. I take a deep cleansing breath as I write that. Questions that sparked this new endeavor include; Why would I work 5 days a week and spend 2 days with Mike as time ticks away? Why would I speed through Monday and Friday, just to watch the end get closer and our time go whooshing by? What better way is there to spend our time together then preaching about what has gotten us through this all these years?
It's time to give back and be thankful. Yes, it's time to reevaluate and I have full confidence that we can do it. Look at all the other stuff we've been through!! This is cake. Hopefully I won't be eating this cake later. Easier said then done I'm sure. If you're in a state of shock- get in line. I would never have imagined leaving my house. It was our source of independence. It's where we call home and it's so perfect for us. We have so many great memories to hold onto from 30 State but we admit we got caught up. We wanted (and in some form, needed) normalcy and we had it for a good 2 years. We lived like "normal" people, went to work, had a home, thought about starting a family and got two dogs (not sure the dog thing is normal but it did somewhat fill a void). We stood in our own way and did what we thought needed to be done.
I don't live with any regret. We were blessed with everything we have and it was ours for a reason. However in true Narducci fashion things change, circumstances change, a path we weren't ready for paved it's way and now we are reevaluating our priorities. Of course we plan to be balanced. Vacations are planed, trips are scheduled, good company is on the menu and memories are underway! We will be so sad to leave our home, but for this reason it's easier and maybe this reasoning came at the right time because a week ago we decided to not even talk about moving/selling until NEXT April. In all honesty I would not have been able to let go of 30 State because of cancer, but I can let go for this new venture.
We are thinking it through and taking it slow. We are after all hoping for next year as a goal date not this coming service year but would be happy if it happened sooner. And of course most important on the list is the NEED for health care (important for some, life altering for us). It's not all concerning. A friend has already extended the prospect of company for days full of long hours. This I love.
In other news…Mike and I recently asked ourselves what's most important in our lives. After our faith, family, friends and the girls we decided the house, work and bills fell short and last on the list. Don't get me wrong...LOVE love LOVE our house, but thinking reasonably and into the future what we want may not be what we need. Our plan: Minimize our living expenses, pay off dept, work less and enjoy the finer things in life. How will we spend our time? Hopefully, amongst other things by next year we will be in the full-time service together. I take a deep cleansing breath as I write that. Questions that sparked this new endeavor include; Why would I work 5 days a week and spend 2 days with Mike as time ticks away? Why would I speed through Monday and Friday, just to watch the end get closer and our time go whooshing by? What better way is there to spend our time together then preaching about what has gotten us through this all these years?
It's time to give back and be thankful. Yes, it's time to reevaluate and I have full confidence that we can do it. Look at all the other stuff we've been through!! This is cake. Hopefully I won't be eating this cake later. Easier said then done I'm sure. If you're in a state of shock- get in line. I would never have imagined leaving my house. It was our source of independence. It's where we call home and it's so perfect for us. We have so many great memories to hold onto from 30 State but we admit we got caught up. We wanted (and in some form, needed) normalcy and we had it for a good 2 years. We lived like "normal" people, went to work, had a home, thought about starting a family and got two dogs (not sure the dog thing is normal but it did somewhat fill a void). We stood in our own way and did what we thought needed to be done.
I don't live with any regret. We were blessed with everything we have and it was ours for a reason. However in true Narducci fashion things change, circumstances change, a path we weren't ready for paved it's way and now we are reevaluating our priorities. Of course we plan to be balanced. Vacations are planed, trips are scheduled, good company is on the menu and memories are underway! We will be so sad to leave our home, but for this reason it's easier and maybe this reasoning came at the right time because a week ago we decided to not even talk about moving/selling until NEXT April. In all honesty I would not have been able to let go of 30 State because of cancer, but I can let go for this new venture.
We are thinking it through and taking it slow. We are after all hoping for next year as a goal date not this coming service year but would be happy if it happened sooner. And of course most important on the list is the NEED for health care (important for some, life altering for us). It's not all concerning. A friend has already extended the prospect of company for days full of long hours. This I love.
Friday, April 23, 2010
The waiting room...
Today I thought I would write about the things you need to survive the waiting room and at a later date continue with the recovery and the trip home.
To survive the waiting room:
You need your Mom. It's like most say in certain situations "I want my Mommy!" and in these situations…trust me, you do. They're also great at keeping you on a tight food schedule and let's face it, no one knows you like you're Mother - you can't lie to her (well you can...but it's not recommended). Your Dad - preferably a stocky 6ft German fellow that can hold you up, keep you going and somehow amongst all the chaos remain consistently in a state of reality. Your Sister - for those shoot a look across the room and they know exactly what your thinking moments. Your Brother - as your body guard. And last but not least a sprinkling of 30 or more friends!!
I remember being overwhelmed in the beginning. I felt crowded, uncomfortable and monitored. I was fighting something and it just so happen to be I was choosing to fight the wrong thing. As time went on and the surgeries kept coming I realized I was the most fortunate person in the whole waiting room. I had my pep's surrounding me, waiting on me hand and foot, and there at a drop of a hat to console me. I also realized they needed to be there not just for me but for themselves and of course Mike. I think back now and if I would have had to sit in that waiting room alone for all those surgeries I would have gone running. It's scary! Your heart skips at a rapid pace when you see the Doctor coming your way. Every time the phone rings you glance over hopefully incase the nurse waves you over. Your afraid to leave (even to pee) because there could be that small chance you will be needed.
One time myself and the entourage were called by the nurse at the desk to go and meet the Doctor on the 4th floor. When those cold aluminum doors opened we were expecting to see the Doctor, but we didn't. We saw operating tables. We watched nurses and surgeons walk by and ask us quizzically "are you guys lost?". I felt frozen in time. If I didn't have the support group I did on that day I never would have gone back to the hospital and surly not alone. Mikes life flashed. I remember my throat tightening (now as I type it's doing it again), I remember going limp and falling to the floor because in what was really 10 min's of waiting felt eternal and because no one seemed to know why were on the surgical floor our thoughts came as sharp pains thinking something horrible happen to Mike. Turns out it was all a misunderstanding. The Doctor whistled around the corner gasped at our reaction and comforted us all as he relayed how well the surgery went. This is when your support group really comes in handy because to this day I remember the Doctors mouth moving, I remember his hands gesturing but I can not for the life of me remember what he said but my entourage was all over it! They were already taking notes.
As time went on we got good at taking up all the room in the waiting room. Ordering pizza. People coming and going in shifts. It actually became routine and I became more and more comfortable with it. So much so that I would be a lost puppy without everyone should it ever happen again.
I also found it helpful to have soothing music for when you do need that moment to yourself. Maybe a book or a craft to keep you busy. A barf bag (just in case). I have never thrown up but I always feel I need to at some point during the day so better safe then sorry. Take walks. If you leave the waiting room just make sure the nurse knows how to get a hold of you. Eat. And most importantly pace yourself. Remember this is only the start. There is a long road to recovery ahead.
To survive the waiting room:
You need your Mom. It's like most say in certain situations "I want my Mommy!" and in these situations…trust me, you do. They're also great at keeping you on a tight food schedule and let's face it, no one knows you like you're Mother - you can't lie to her (well you can...but it's not recommended). Your Dad - preferably a stocky 6ft German fellow that can hold you up, keep you going and somehow amongst all the chaos remain consistently in a state of reality. Your Sister - for those shoot a look across the room and they know exactly what your thinking moments. Your Brother - as your body guard. And last but not least a sprinkling of 30 or more friends!!
I remember being overwhelmed in the beginning. I felt crowded, uncomfortable and monitored. I was fighting something and it just so happen to be I was choosing to fight the wrong thing. As time went on and the surgeries kept coming I realized I was the most fortunate person in the whole waiting room. I had my pep's surrounding me, waiting on me hand and foot, and there at a drop of a hat to console me. I also realized they needed to be there not just for me but for themselves and of course Mike. I think back now and if I would have had to sit in that waiting room alone for all those surgeries I would have gone running. It's scary! Your heart skips at a rapid pace when you see the Doctor coming your way. Every time the phone rings you glance over hopefully incase the nurse waves you over. Your afraid to leave (even to pee) because there could be that small chance you will be needed.
One time myself and the entourage were called by the nurse at the desk to go and meet the Doctor on the 4th floor. When those cold aluminum doors opened we were expecting to see the Doctor, but we didn't. We saw operating tables. We watched nurses and surgeons walk by and ask us quizzically "are you guys lost?". I felt frozen in time. If I didn't have the support group I did on that day I never would have gone back to the hospital and surly not alone. Mikes life flashed. I remember my throat tightening (now as I type it's doing it again), I remember going limp and falling to the floor because in what was really 10 min's of waiting felt eternal and because no one seemed to know why were on the surgical floor our thoughts came as sharp pains thinking something horrible happen to Mike. Turns out it was all a misunderstanding. The Doctor whistled around the corner gasped at our reaction and comforted us all as he relayed how well the surgery went. This is when your support group really comes in handy because to this day I remember the Doctors mouth moving, I remember his hands gesturing but I can not for the life of me remember what he said but my entourage was all over it! They were already taking notes.
As time went on we got good at taking up all the room in the waiting room. Ordering pizza. People coming and going in shifts. It actually became routine and I became more and more comfortable with it. So much so that I would be a lost puppy without everyone should it ever happen again.
I also found it helpful to have soothing music for when you do need that moment to yourself. Maybe a book or a craft to keep you busy. A barf bag (just in case). I have never thrown up but I always feel I need to at some point during the day so better safe then sorry. Take walks. If you leave the waiting room just make sure the nurse knows how to get a hold of you. Eat. And most importantly pace yourself. Remember this is only the start. There is a long road to recovery ahead.
Tuesday, April 13, 2010
Sailing Away...
Among many things the wind is out of my sails regarding this "Medical Miracle Drug" the Doctors are promising. Mike had an appointment with the Doctor on April 1st. His Doctor said "April Fools Mike, we don't have a cure for you! We thought it would be really funny to get your hopes up and side track you from getting the cyber knife!!". Once again the jokes on me. So okay I admit that's not what Dr. Staddon said, but he might as well had. They (the powers that be) are still trying to get state approval for the drug but really we are approaching two months since we were told about "it". Do you hear that buzzing noise? Did you feel the breeze? That's the wind leaving your sail too, isn't it?? When I turned to Mike and asked him if he would be willing to do the cyber knife since this drug treatment is taking to long. He (very honestly) told me "No. I never really wanted to do it in the first place." I ask you not to attack him on this decision as it seemed like a very hard one to make.
On another note: I was recalling the importance of nutrition during this arduous adventure. A small bit of guilt I live with and probably always will. It cannot be denied that nutrition is 100% important and 100% applicable for the right person. I write for the "right person" because if it was up to Mike he would hop in his own grave before he changed his diet completely. Lets face it he'll never be the guy who looks at the label for nutritional value. Ha, that visual made me laugh. Mike reading the label and then saying "Babe, I can't have this! It says highly preserved processed meat". I mean lets me honest we are talking about the guy who found out the Slim Jim factory burnt down and almost had a screaming tantrum right in the middle of the supermarket isle. I have over the years changed Mikes nutritional value's little by little, but never completely. One time my Aunt brought me "Organic Hot Dogs". Is that not so ironic? I hid them behind the "Other (better tasting) Hot Dogs" and tried to trick Mike. He saw the label and went running for the hills.
I would urge all to change their diets (slowly if need be) as it is my firm belief that we all have cancer - it's just the unfortunate ones that it comes out of hiding for. Keep it healthy, keep it fresh, keep it organic (and don't tell your husbands when it's healthy, fresh or organic). Our little secret. Oh and another secret...if you're going to "hide" the organic label, follow through and make sure you do a better job at it then me.
On another note: I was recalling the importance of nutrition during this arduous adventure. A small bit of guilt I live with and probably always will. It cannot be denied that nutrition is 100% important and 100% applicable for the right person. I write for the "right person" because if it was up to Mike he would hop in his own grave before he changed his diet completely. Lets face it he'll never be the guy who looks at the label for nutritional value. Ha, that visual made me laugh. Mike reading the label and then saying "Babe, I can't have this! It says highly preserved processed meat". I mean lets me honest we are talking about the guy who found out the Slim Jim factory burnt down and almost had a screaming tantrum right in the middle of the supermarket isle. I have over the years changed Mikes nutritional value's little by little, but never completely. One time my Aunt brought me "Organic Hot Dogs". Is that not so ironic? I hid them behind the "Other (better tasting) Hot Dogs" and tried to trick Mike. He saw the label and went running for the hills.
I would urge all to change their diets (slowly if need be) as it is my firm belief that we all have cancer - it's just the unfortunate ones that it comes out of hiding for. Keep it healthy, keep it fresh, keep it organic (and don't tell your husbands when it's healthy, fresh or organic). Our little secret. Oh and another secret...if you're going to "hide" the organic label, follow through and make sure you do a better job at it then me.
Subscribe to:
Posts (Atom)