Waiting to be called in for the myelogram and simulation. I had to make myself look pretty because they are taking a picture of me....extra blush to my puffy steroid face. Really...squirrel holding acorns!
I'm nervous about the spinal injection. I know they numb me, never seems to work or be enough.
Paul is calming me and my friend Kristen took a ride in with us. She had to come in to city....timing was perfect. She is an amazing supportive friend that makes me smile. My day is was already calmer not thinking about the procedure this morning. Brings me peace...and she makes forget about me crap. I love that.
I won't be out of pain until they blast these spinal suckers....really sticking onto my little vertibrea bones. I don't like them.
I am sleeping better. It's amazing not being tired all day. What a difference. Changes everything...especially my mental state. No more coffee for me. I didn't drink it anyway.( sometimes!) Tea lover :) keeping the liver clean
Chemo...next. That we can talk about in my next blog journal. Deep breathe.
Love to all...one step closer.
Michelle :)))
Monday, November 21, 2011
Friday, November 18, 2011
Dashing away
Dashing into the city this morning to talk about Livers! How interesting! My body knowledge is just expanding. As the necrosis eats away at my short term memory, I soak up everything about spinal surgeries, treatments and now liver cures. Hopefully, we will be discussing cures. You never know with this Doctor. That is why my love blogger, Michelle has Three....Did you hear that...THREE Sarcoma oncologists at different hospitals. Not for different opinions. They all say the same thing. Because, one may offer an extra bonus or a clinical trial. One may not stare at you and say, " Oh you have back pain, it will go away."
I have my sleeping schedule figured out. " Rub, Rub on my eyes!" I think! Last night I slept very well with little pain. Every day is different and I am just patiently pushing through without complain. Ok, so complain.
Ok...I am off... Dashing. I love this new word. I am using in before Christmas. It's not to be confused with a reindeer.
Have a fantastic, peaceful Day.
Keep those prayers going that my insurance company sees the light.
I have my sleeping schedule figured out. " Rub, Rub on my eyes!" I think! Last night I slept very well with little pain. Every day is different and I am just patiently pushing through without complain. Ok, so complain.
Ok...I am off... Dashing. I love this new word. I am using in before Christmas. It's not to be confused with a reindeer.
Have a fantastic, peaceful Day.
Keep those prayers going that my insurance company sees the light.
Sunday, November 13, 2011
Never liked liver!
HELP!!!! IT"S HORRIBLE!!!
I have been in and out of bed for hours, trying to get comfortable. The pain has been so unbearable at times. Actually......it's awful all day. It's downright mean and my body stinks right now for hurting me like this! Tonight, it's shooting through the whole left side of my body. The past few days have been worse and I have been taking pain medication to get me through it. As much as I hate taking them, they help. I am so exhausted daily from the struggle of just sitting down for lunch, or leaning over the sink to do dishes. Yes, I do housework! Don't look in the dryer, I can't even fold the lovely spring scented sheets I just washed. Because, I can't bend down to get them out. I have limitations, and I hate it. I have to stay busy and by 6pm I can't even think about sitting on the couch to relax. That is more like torture to my whole upper body. I eat standing, it's great.
Again, I am sleep deprived. This just leads to a whole mess of emotions.
Tomorrow I start the process of the Image Guided Radiation Therapy. I read the book they gave me. Paul went online to double check the procedure. He did this to put my mind and his at ease. I am petrified. I hate that they are putting a needle in my spine. I've had this done before and I wouldn't say it was one of my most favorite moments. I was strapped sideways to a metal table while they removed blood from my hand, spinal fluid from my back. Then they did a lumbar drain patch. They inject my blood into my back to heal up the spot. A nice young man held my sweaty hand while I screamed in pain, I didn't forget that! I still from time to time have pain in the area of my lower spine that they touched. Trauma, you never forget. My body didn't.
WOW...I almost forgot the news that you have all been waiting for. My PET scan results.
Doc Bilsky called Friday to talk about my scan results. Everything looked lovely except my funny looking Liver was lighting up in a few spots. A glow that was significant enough to be a problem and needs to be addressed. It was a nice happy glow "8".
Let me deal with spine tumors and then the liver. Things can be treated and fixed. And If they can't...we join the circus.
This whole out of the head and neck cancer is new to me. I had to figure out where the hell my liver was! Right side of the street! Knowing it's not a local problem for me is beyond frightening. It changes the whole ball game. I always knew that it was going to happen. I thought the lungs, something closer, maybe my trachea, Jaw or lungs. I forgot about the spine. I have to brush up on my, "Where does sarcoma cancer like to vacation?" I can't sit back and just think that this is it. It may like to island hop, then I will be pissed. I am not giving it a boat!
I will deal tomorrow and this week with the Spine. Making a plan to see a few of my many oncologist Doctors that I have. Dealing with Sarcoma of the Spine and Liver. I wonder what they will tell me. I do know that there are many treatments out there. A plan of attack needs to be made!
CYCLE FOR SURVIVAL MSKCC
Go to www.cycleforsurvival.org
Co-founded in 2007 by Jennifer Goodman Linn and her husband, Dave, Cycle for Survival is the national, indoor relay-style team cycling event that has raised more than $9 million in support of lifesaving research on rare cancers at Memorial Sloan-Kettering Cancer Center, and in the past five years has funded twenty-five clinical trials and research studies.
I am Cycling for Survival in 2012!
PLEASE DONATE AND HELP ME REACH MY GOAL! NO GIFT IS TOO SMALL.
www.cycleforsurvival.org
To make a donation go to:
1. TEAM
2. CURRENT TEAM LIST
3. FRANKS CYCLERS (Frank is amazing!)
CLICK ON MY NAME TO DONATE " MICHELLE PATERNOSTER" thank you so much xoxoxo
I have been in and out of bed for hours, trying to get comfortable. The pain has been so unbearable at times. Actually......it's awful all day. It's downright mean and my body stinks right now for hurting me like this! Tonight, it's shooting through the whole left side of my body. The past few days have been worse and I have been taking pain medication to get me through it. As much as I hate taking them, they help. I am so exhausted daily from the struggle of just sitting down for lunch, or leaning over the sink to do dishes. Yes, I do housework! Don't look in the dryer, I can't even fold the lovely spring scented sheets I just washed. Because, I can't bend down to get them out. I have limitations, and I hate it. I have to stay busy and by 6pm I can't even think about sitting on the couch to relax. That is more like torture to my whole upper body. I eat standing, it's great.
Again, I am sleep deprived. This just leads to a whole mess of emotions.
Tomorrow I start the process of the Image Guided Radiation Therapy. I read the book they gave me. Paul went online to double check the procedure. He did this to put my mind and his at ease. I am petrified. I hate that they are putting a needle in my spine. I've had this done before and I wouldn't say it was one of my most favorite moments. I was strapped sideways to a metal table while they removed blood from my hand, spinal fluid from my back. Then they did a lumbar drain patch. They inject my blood into my back to heal up the spot. A nice young man held my sweaty hand while I screamed in pain, I didn't forget that! I still from time to time have pain in the area of my lower spine that they touched. Trauma, you never forget. My body didn't.
PET SCAN FUN! MY POOR LITTLE LIVER :(
Doc Bilsky called Friday to talk about my scan results. Everything looked lovely except my funny looking Liver was lighting up in a few spots. A glow that was significant enough to be a problem and needs to be addressed. It was a nice happy glow "8".
Let me deal with spine tumors and then the liver. Things can be treated and fixed. And If they can't...we join the circus.
This whole out of the head and neck cancer is new to me. I had to figure out where the hell my liver was! Right side of the street! Knowing it's not a local problem for me is beyond frightening. It changes the whole ball game. I always knew that it was going to happen. I thought the lungs, something closer, maybe my trachea, Jaw or lungs. I forgot about the spine. I have to brush up on my, "Where does sarcoma cancer like to vacation?" I can't sit back and just think that this is it. It may like to island hop, then I will be pissed. I am not giving it a boat!
I will deal tomorrow and this week with the Spine. Making a plan to see a few of my many oncologist Doctors that I have. Dealing with Sarcoma of the Spine and Liver. I wonder what they will tell me. I do know that there are many treatments out there. A plan of attack needs to be made!
CYCLE FOR SURVIVAL MSKCC
Go to www.cycleforsurvival.org
Co-founded in 2007 by Jennifer Goodman Linn and her husband, Dave, Cycle for Survival is the national, indoor relay-style team cycling event that has raised more than $9 million in support of lifesaving research on rare cancers at Memorial Sloan-Kettering Cancer Center, and in the past five years has funded twenty-five clinical trials and research studies.
That was just a little bit to read about Jennifer and her amazing story. I also have had a connection with from sharing a waiting room for many years. Our Oncolgist Dr. Maki was cycling for her, raising mony for the hospital in which he worked. A cause to get his patients on clinical trials and a better shot at cancer free life.
This year a bunch of cancer support group members who walk the halls of MSKCC joined forces to raise money for this great casue. We are patients at Memorial Sloan-Ketterin Cancer Center. These donations are going to us! They are helping us!
I am Cycling for Survival in 2012!
PLEASE DONATE AND HELP ME REACH MY GOAL! NO GIFT IS TOO SMALL.
www.cycleforsurvival.org
To make a donation go to:
1. TEAM
2. CURRENT TEAM LIST
3. FRANKS CYCLERS (Frank is amazing!)
CLICK ON MY NAME TO DONATE " MICHELLE PATERNOSTER" thank you so much xoxoxo
Wednesday, November 9, 2011
It's BACK!
Is everyone sitting down? I'll wait. I'll stand...ouch.
I have had about 3-4 weeks of sleepless nights and painful back aches. I tried massage, acupuncture
(almost killed the lady, so painful), Ice and heat packs. This can happen since I went back to dancing, Ballroom. I was feeling great and I figured a pulled muscle, maybe a broken rib. I was and still am dealing with little issues from the summer fun radiation to my face. My energy level has been great and I have been starting to feel normal. Then this back pain started that twisted into the front of my belly. I swore I had another hernia. I was just about to go back to working out and yoga. But, stretching made it worse.
I was going to make an appointment with an orthopedic spinal doctor on LI. I knew (& Paul told me over & over) to get it done in the city. Then it's on record and my Doctors have a good scan on file, just in case if I even needed to look at a reference in the future. I also could use a scan of my body.
That's when I called and got MRI of the spine appointment with one of my fab doctors at Msk. The nurse didn't like that with all the steroids I was on, I still had pain and inflamation. I shouldn't have that.
I went in on Thursday at 10am. After the scan, I walked my way up to the Mskcc main building to get my results. I was trailing the beautiful aroma of Ben-gay ointment all over the city. I smelled so nice!
My lovely Sarcoma Cancer non-friends have metastasized into my back :(
I have three tumors on/in the bone. Two little ones and a medium size on the lower back that's attatched to the rib cage. That's the one that hurts so much. The pain is unbearable. I haven't slept in weeks and when I do I have to sit up. It's so hard to do anything, sitting is awful.
Pain managent dropped in and I have been dealing better with it. Ok...that's a lie...I told them what to give me! Want to hear my nightly routine? Paul puts Lidocaine patches on for me so I can get some sleep. I have a pain, sleeping pill mix...with Ativan, Lyrica, Mobic, steroids....All of the above! I barely take the pain pills, they don't work. But, my friend and support told me how to take them so I stay out of pain. I am listening!
Learn about your medication. Ask the nurse what it is. I google everything and try to figure out if it's worth taking. Sometimes to many meds together, don't work. One pill sometimes does the trick. Unfortunatly, I have brain, inflamation and pain issues! But...I know the Ativan will knock my butt to sleep. So, I don't take the sleeping pills. I drink sleepy time tea with Melatonin. Steroids I take during the day...they make me hyper at night. Same with the Pain pills. It's like caffiene in my system.
They also gave me something to balance....My white cells were off. Where are those perscriptions? Paul. Meanwhile...I will be balancing all by myself.
I am looking in any new or old ways to cleanse and to keep my immune system up. Nance sent me a great link about Natural oils that break the blood brain barrier and can cure :) I will post the link. Any suggestions out there? Willing to travel for some good body energy.
I may be starting my tumor removal on Monday. Dr Josh Yamada will be performing Image guided radiation on the tumors and making them POOF...dissapear. It is an amazing non-surgical procedure.
Google this, read and tell everyone!! image guided radiation, Mskcc
Bloggers & friends, please pray that my Pet scan is clean. I may not be NED anymore! Actaully, I never was. Funny...I told you! It's the pathetic waiting game and I wasn't wrong. My poor body just won't fight! I knew I was off. That is why I fought for my Doctors to pay attention to my head and look....I was right. I hate being right.
I will not be taken over by my stupid body cells that refuse to listen to me! Ned will happen again, oh yes it will.
I didn't blog about this right away. I should. I get so much support from all of you. My dilema, maybe you can help. I know some close friends that read it and I wasn't ready (and still not) to share. How do you continue the best therapy...blogging without dealing with the annoyance of a town news flash? I only want and wanted to tell those close to me.
The saga continues..........
I have had about 3-4 weeks of sleepless nights and painful back aches. I tried massage, acupuncture
(almost killed the lady, so painful), Ice and heat packs. This can happen since I went back to dancing, Ballroom. I was feeling great and I figured a pulled muscle, maybe a broken rib. I was and still am dealing with little issues from the summer fun radiation to my face. My energy level has been great and I have been starting to feel normal. Then this back pain started that twisted into the front of my belly. I swore I had another hernia. I was just about to go back to working out and yoga. But, stretching made it worse.
I was going to make an appointment with an orthopedic spinal doctor on LI. I knew (& Paul told me over & over) to get it done in the city. Then it's on record and my Doctors have a good scan on file, just in case if I even needed to look at a reference in the future. I also could use a scan of my body.
That's when I called and got MRI of the spine appointment with one of my fab doctors at Msk. The nurse didn't like that with all the steroids I was on, I still had pain and inflamation. I shouldn't have that.
I went in on Thursday at 10am. After the scan, I walked my way up to the Mskcc main building to get my results. I was trailing the beautiful aroma of Ben-gay ointment all over the city. I smelled so nice!
My lovely Sarcoma Cancer non-friends have metastasized into my back :(
I have three tumors on/in the bone. Two little ones and a medium size on the lower back that's attatched to the rib cage. That's the one that hurts so much. The pain is unbearable. I haven't slept in weeks and when I do I have to sit up. It's so hard to do anything, sitting is awful.
Pain managent dropped in and I have been dealing better with it. Ok...that's a lie...I told them what to give me! Want to hear my nightly routine? Paul puts Lidocaine patches on for me so I can get some sleep. I have a pain, sleeping pill mix...with Ativan, Lyrica, Mobic, steroids....All of the above! I barely take the pain pills, they don't work. But, my friend and support told me how to take them so I stay out of pain. I am listening!
Learn about your medication. Ask the nurse what it is. I google everything and try to figure out if it's worth taking. Sometimes to many meds together, don't work. One pill sometimes does the trick. Unfortunatly, I have brain, inflamation and pain issues! But...I know the Ativan will knock my butt to sleep. So, I don't take the sleeping pills. I drink sleepy time tea with Melatonin. Steroids I take during the day...they make me hyper at night. Same with the Pain pills. It's like caffiene in my system.
They also gave me something to balance....My white cells were off. Where are those perscriptions? Paul. Meanwhile...I will be balancing all by myself.
I am looking in any new or old ways to cleanse and to keep my immune system up. Nance sent me a great link about Natural oils that break the blood brain barrier and can cure :) I will post the link. Any suggestions out there? Willing to travel for some good body energy.
Image Guided Radiation
I may be starting my tumor removal on Monday. Dr Josh Yamada will be performing Image guided radiation on the tumors and making them POOF...dissapear. It is an amazing non-surgical procedure.
Google this, read and tell everyone!! image guided radiation, Mskcc
Bloggers & friends, please pray that my Pet scan is clean. I may not be NED anymore! Actaully, I never was. Funny...I told you! It's the pathetic waiting game and I wasn't wrong. My poor body just won't fight! I knew I was off. That is why I fought for my Doctors to pay attention to my head and look....I was right. I hate being right.
I will not be taken over by my stupid body cells that refuse to listen to me! Ned will happen again, oh yes it will.
I didn't blog about this right away. I should. I get so much support from all of you. My dilema, maybe you can help. I know some close friends that read it and I wasn't ready (and still not) to share. How do you continue the best therapy...blogging without dealing with the annoyance of a town news flash? I only want and wanted to tell those close to me.
The saga continues..........
Friday, October 28, 2011
Doctor Bully & Exhaustion
I don't think so Doc!
We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them.
Today is a little different.
Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good! My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right. It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired.
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!
Was the last head-pain-trauma-ache from lack of steroids or brain swelling? I want an answer. I want an MRI. I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED!
Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors!
Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack.
I am already seeing my vision getting blurry...off...I know what happens next.
Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will.
Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery.
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air.
I don't want to be tired anymore.
We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them.
Today is a little different.
Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good! My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right. It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired.
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!
Was the last head-pain-trauma-ache from lack of steroids or brain swelling? I want an answer. I want an MRI. I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED!
Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors!
Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack.
I am already seeing my vision getting blurry...off...I know what happens next.
Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will.
Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery.
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air.
I don't want to be tired anymore.
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