Well, I found out this past week that my CAT scan showed 65 new nodules since May 2012. I asked for a test to see if maybe those nodules were from a fungus from living in Kern County, but they weren't. I had surgery on December 7th, 2012. They took three wedge sections from my right lung. Worse surgery ever. Had to have a hose in my side to drain plural fluid from the lung space. It is January 16th and I finally have seen some improvement in the incisions from the surgery.
I was told there was NO CANCER! Woooo Hoooo! Unfortunately, they are finding either a MAC infection which the body makes granulomas to protect itself in the lung, OR I have TB. They have been growing a culture in the Hoag Path Lab for about 5-1/2 weeks now and I have been on Ethambutol and Azithromiacin since I saw the infectious disease doctor.
If it's TB, its a quarantine type situation until I have taken meds for about a month or six weeks. Lovely Orange County Health Department...but my doctor doesn't think it is TB, he thinks I got MAC from a lowered immune system from the MISDIAGNOSIS by Doctor Chawla at the Sarcoma Center in Santa Monica. He first said I had NEW tumors on my right buttock, which I didn't. Once a year of treatment passed, he went from saying I had tumors in my leg to many different diagnoses, then he had me come to his office where he stared me right in the face and said he had been treating me the entire time for residual tumor in my left side...hello? I'm not stupid. I have the scans and this blog that say that Vicki, his nurse, called me and said I had 7 new tumors on my RIGHT SIDE BUTTOCK. Give me a break!
I am so over doctors, but apparently I will never be done using them.
I await the results of the wedge biopsy conclusively.
And another day begins.
Wednesday, January 16, 2013
Monday, July 9, 2012
Continuing Issues
I have been having a problem with a new symptom. If you have read my blog, all of my problems center on the left glute. Because of this, I rely and depend on using my right butt cheek to sit on, to lean on and when I sleep at night, I lay on my right side...that was up until about 2 months ago.
Two months ago I went to Dr. Brien and showed him a lump on the right side. He could see it, and feel it, but when he ordered CT's and MRI's, it was not visible...basically I was sent on my way.
I continued to keep making appointments to see him, seeing other doctors, even visiting the emergency room about two weeks ago. Finally, last week, Dr. Brien gave me a referral to another ortho doctor. Dr. Rasouli. I really like him. I saw him today. He told me that no matter what, he would figure out what was wrong with me and promised he would make me feel better.
He examined me, then had me lay on my back and he bent up my right leg and pushed down and I immediately felt pain both in the back where the lump is and at the joint.
He ordered an MR arthrogram of my right hip, and a CT pelvis, right hip and right femur. I have those done on the 17th of July and the 23rd of July. Keeping my fingers crossed that these tests will reveal the problem!
Two months ago I went to Dr. Brien and showed him a lump on the right side. He could see it, and feel it, but when he ordered CT's and MRI's, it was not visible...basically I was sent on my way.
I continued to keep making appointments to see him, seeing other doctors, even visiting the emergency room about two weeks ago. Finally, last week, Dr. Brien gave me a referral to another ortho doctor. Dr. Rasouli. I really like him. I saw him today. He told me that no matter what, he would figure out what was wrong with me and promised he would make me feel better.
He examined me, then had me lay on my back and he bent up my right leg and pushed down and I immediately felt pain both in the back where the lump is and at the joint.
He ordered an MR arthrogram of my right hip, and a CT pelvis, right hip and right femur. I have those done on the 17th of July and the 23rd of July. Keeping my fingers crossed that these tests will reveal the problem!
Thursday, March 8, 2012
Lung Cancer Scare...was just that...a scare!
If I did not post before, I am posting now. After I had the biopsy done of my lungs, the doctor's office called and scheduled me for lung resection, on February 16. They sent me all the paperwork, scheduled visits for pulmonary function tests, EKG, blood work and the whole ball of wax. I was totally freaked out. I sent out a text message to everyone saying....It's official. I have lung cancer.
I cried all day, I researched lung mets...not good news. Likelihood of seeing my daughter graduate college...next to none! Definitely not when she got her masters!
It can only happen to ME! The doctor's office jumped the gun. The doctor called me after working hours and said....good news! Biopsy showed granulomatous disease. WAIT.......no surgery? I'm good? Are you sure?
So, I found out I didn't have lung mets! Since I have the extremely good luck of getting bad news, I want to double check, so I have the slides of the pathology sent to Cedars and make an appointment with Dr. Rob McKenna. I see him and he says he agrees with the findings. Have another scan in 3 months and if there is no growth, I am fine....just scans every three months.
I cried all day, I researched lung mets...not good news. Likelihood of seeing my daughter graduate college...next to none! Definitely not when she got her masters!
It can only happen to ME! The doctor's office jumped the gun. The doctor called me after working hours and said....good news! Biopsy showed granulomatous disease. WAIT.......no surgery? I'm good? Are you sure?
So, I found out I didn't have lung mets! Since I have the extremely good luck of getting bad news, I want to double check, so I have the slides of the pathology sent to Cedars and make an appointment with Dr. Rob McKenna. I see him and he says he agrees with the findings. Have another scan in 3 months and if there is no growth, I am fine....just scans every three months.
Tuesday, February 7, 2012
The Biopsy (warning...contains graphic descriptions)
Today, I had the biopsy. I arrived at the hospital early, but did not get taken into the room until almost noon. When I got into the room it was cold, as are ALL rooms where they intend to make holes in your body. I transfer to the CT table and am scanned a couple times, the doctor and radiologist examine the images and have me turn with my left lung up, and lay on my right hip. I do that and again I am scanned. The doctor gives me an injection of lidocaine and gets out the equipment to do the biopsy, out of my line of sight. I am thinking this is going to be easy. I can do this!
He gives my skin just a moment to numb when he inserts another long needle into my side... I can feel it pierce the lung...but this is NOT the bad part. This is ALL the EASY part. The hard part is when he tells me to take a breath in and hold it while he slides me back into the CT machine and scans me with the needle in me and pushes it more and more toward the mass with each pass back through the scanner. I can't take a breath, it hurts, I cry...and start thinking about the future right there...the future of getting that mass out and its not just a needle. If this hurts this much, I don't want surgery! Another pass through the machine, examine the image and push that needle closer to its target. The pain is substantial with each movement of the needle, and I am hoping this will be over soon, so I try to do what the doctor says. He says that I must exactly mimic the previous breath each time. The nodule moves each time I take a breath, so it is a moving target! We finally settle on not taking in the breath, but blowing out the breath...I guess I am better at exhaling than inhaling!
After he finishes the first one, the second biopsy begins...the first needle however, is still sitting there. He does the same thing with the second needle. Finally, with great pain (to me) he completes the biopsies and pulls both needles out. I am happy and glad that it is finally over...but it isn't. The most intense burning stabbing pain happens the second he pulls the needles out! I am coughing up dark red blood, fresh red blood, apparently my lungs are bleeding on the INSIDE, and the only way for all the blood to escape is through my mouth and nose. I can't take a breath. I am given a towel and told not to swallow the blood. I spit out what is coming up... I am given one of those kidney shaped bowls and do a fairly decent job of filling it. I can't stop coughing and bringing up more blood. They warn me if I don't pit out all the blood I can suffer a collapsed lung, so I am doing my best to clear my lung of all blood the way they ask.
I am moved to recovery. As I lie in recovery, am given several injections of pain meds, which don't even touch the fact that I can't take a breath in. I need a shot to help me breathe, to help me suck in one breath that doesn't cause searing pain! They have called the doctor back to my bedside four times because I have no breath sounds. An x-ray is done and there is no sign that I am in danger of a collapsed lung. They won't let me move from the position I am in. I am to remain laying on my left lung side, and I have my head tucked down to my shoulder. I am only able to take small shallow breaths in. I find that if I keep them just shy of where it is painful, I am way more comfortable, so I do that.
My nurses don't leave my side. I have three nurses in recovery. Suddenly I realize that Bruce has arrived and is just walking around recovery, like he belonged there. They are telling him he isn't supposed to be back here, but I am so happy to see him. I begged the nurse to not send him back to the waiting room, so she allows him to stay. It is nice to see a friends face, and it calms me, but he cannot stay long...but good things happen! My friend Suzie shows up! She has driven OVER 100 MILES to be there for me! I am truly blessed! First Bruce, and now Suzie! Suzie just sits down and is insistent that she is staying right there until I am better. I haven't seen Suzie for 2 years, but here she is! My lungs may hurt, but my heart is happy. How lucky am I to have such amazing friends that are willing to drop everything to be here for me!
A full 4 hours has passed since the biopsies and I feel much better. Still having trouble breathing, but the shot of Torodol (an anti-inflammatory) has made a huge difference in my pain and comfort level and they decide I can go home. Suzie goes to get her car to take me home and spend the night at my townhouse! I am so blessed!
Here I am at home. Laying on the couch, taking shallow breaths, laying on my left side. I am finally comfortable. I take my pain meds and finally head up to bed..and am thankful for the 3 in topper of memory foam I have on my mattress. Suzie scooches in next to me, Miranda is asleep in the spare room, Molly at my bedside. I am so glad this day is over. The nurse told me that my doctor will have the results of the biopsies tomorrow or Wednesday!
I have survived another day, another procedure and will do what it takes to survive this monster and rid my body of it's disease! Good night! Wish me sweet dreams!
He gives my skin just a moment to numb when he inserts another long needle into my side... I can feel it pierce the lung...but this is NOT the bad part. This is ALL the EASY part. The hard part is when he tells me to take a breath in and hold it while he slides me back into the CT machine and scans me with the needle in me and pushes it more and more toward the mass with each pass back through the scanner. I can't take a breath, it hurts, I cry...and start thinking about the future right there...the future of getting that mass out and its not just a needle. If this hurts this much, I don't want surgery! Another pass through the machine, examine the image and push that needle closer to its target. The pain is substantial with each movement of the needle, and I am hoping this will be over soon, so I try to do what the doctor says. He says that I must exactly mimic the previous breath each time. The nodule moves each time I take a breath, so it is a moving target! We finally settle on not taking in the breath, but blowing out the breath...I guess I am better at exhaling than inhaling!
After he finishes the first one, the second biopsy begins...the first needle however, is still sitting there. He does the same thing with the second needle. Finally, with great pain (to me) he completes the biopsies and pulls both needles out. I am happy and glad that it is finally over...but it isn't. The most intense burning stabbing pain happens the second he pulls the needles out! I am coughing up dark red blood, fresh red blood, apparently my lungs are bleeding on the INSIDE, and the only way for all the blood to escape is through my mouth and nose. I can't take a breath. I am given a towel and told not to swallow the blood. I spit out what is coming up... I am given one of those kidney shaped bowls and do a fairly decent job of filling it. I can't stop coughing and bringing up more blood. They warn me if I don't pit out all the blood I can suffer a collapsed lung, so I am doing my best to clear my lung of all blood the way they ask.
I am moved to recovery. As I lie in recovery, am given several injections of pain meds, which don't even touch the fact that I can't take a breath in. I need a shot to help me breathe, to help me suck in one breath that doesn't cause searing pain! They have called the doctor back to my bedside four times because I have no breath sounds. An x-ray is done and there is no sign that I am in danger of a collapsed lung. They won't let me move from the position I am in. I am to remain laying on my left lung side, and I have my head tucked down to my shoulder. I am only able to take small shallow breaths in. I find that if I keep them just shy of where it is painful, I am way more comfortable, so I do that.
My nurses don't leave my side. I have three nurses in recovery. Suddenly I realize that Bruce has arrived and is just walking around recovery, like he belonged there. They are telling him he isn't supposed to be back here, but I am so happy to see him. I begged the nurse to not send him back to the waiting room, so she allows him to stay. It is nice to see a friends face, and it calms me, but he cannot stay long...but good things happen! My friend Suzie shows up! She has driven OVER 100 MILES to be there for me! I am truly blessed! First Bruce, and now Suzie! Suzie just sits down and is insistent that she is staying right there until I am better. I haven't seen Suzie for 2 years, but here she is! My lungs may hurt, but my heart is happy. How lucky am I to have such amazing friends that are willing to drop everything to be here for me!
A full 4 hours has passed since the biopsies and I feel much better. Still having trouble breathing, but the shot of Torodol (an anti-inflammatory) has made a huge difference in my pain and comfort level and they decide I can go home. Suzie goes to get her car to take me home and spend the night at my townhouse! I am so blessed!
Here I am at home. Laying on the couch, taking shallow breaths, laying on my left side. I am finally comfortable. I take my pain meds and finally head up to bed..and am thankful for the 3 in topper of memory foam I have on my mattress. Suzie scooches in next to me, Miranda is asleep in the spare room, Molly at my bedside. I am so glad this day is over. The nurse told me that my doctor will have the results of the biopsies tomorrow or Wednesday!
I have survived another day, another procedure and will do what it takes to survive this monster and rid my body of it's disease! Good night! Wish me sweet dreams!
Monday, February 6, 2012
Fear of the Unknown
Okay, so I went upstairs hours ago, to sleep. I think I am about to fall asleep, and I start sobbing. I am afraid. I can't explain it. I don't think this has happened before...maybe it has, but this is the first time I have been afraid for my life.
It's not the procedure tomorrow...not the actual thing that is happening. I can deal with the physical thing of being there, getting there, sitting there, getting stuck with a big needle...it's what this test will reveal that is scaring the life out of me. I am petrified. My heart is breaking, my nose is running, my eyes are weeping, I want someone to wrap me up and tell me it isn't happening...not to me, not to me.
I remember thinking that I was the youngest girl, that I would outlive them all. I remember thinking that I hated that idea when I was younger...to be the one to live the longest. I already watched one sister pass, I was fearful of the possibility that I would live long enough to be the last...but I know now I won't. I guess I could, but it is unlikely...not with cancer. Not if it has taken up residence in my lungs!
It's like there is a bug crawling around inside my body, and I want it OUT. I don't care what they have to do to accomplish that, I just want it GONE! This very thought process is what has made me make bad decisions in the past...believe and trust all of the doctors. What? I need surgery, okay, What? I need chemo? Okay. What? I need radiation, OKAY! Do it all again? OKAY...just make it go away!
I am sticking to my guns this time. I want proof that it has spread. I want a pathology report that says that it is back before I jump in with both feet. Recurrence in my lungs means this...surgery...scary surgery to remove a wedge or more of my left lung. Radiation to hit any other lesions that can't be gotten in that surgery, and the dreaded CHEMO again to kill what remains in my body floating around.
Chemo that will take my hair. Radiation that makes me so ill. Pain from cutting into and removing another part of my body...this time a more important part. I can live without half my ass, but how do I live with half my lung? How does that feel? Will I be able to take deep breaths? Will I be able to swim underwater for as long? Will it hurt horribly?
I am afraid of the unknown. I am afraid of dying. I am afraid of leaving this world before my children have become who they will be. Leaving before they are succeeding at life. I am afraid of what me not surviving will do to them. How will they deal with it? I won't be there to help them be okay with it. Shit, I'm not okay with it. I want to see my grandchildren. I want to see Jackie's children and meet Jackie and Charlie's spouses. I want to see her pregnant, see her face when they hand her a beautiful little life, and she transforms from my baby into a mother, like her sister.
I want to see Charlie become a father, like his step-brother Casey. Casey became this awesome man, responsible, accomplished, a hard-working, Holli loving man. Father of FOUR boys....and he speaks of another, maybe a little girl in 5 years! And Cori...I want to see her walk down the aisle and be the successful person I know she can be...Joshua...OMG, Josh is going to be amazing in life! He has an old soul, I can't explain it, but I can see it in his eyes.
Today, I went and saw my oldest Granddaughter, Madeline sing. I know that she isn't as in to singing as we want her to be, but I think its because she doesn't believe that she is as talented as we all think she is, we all know she is! Wouldn't it be awesome if she became a famous opera singer? Alyza is just like Josh...an old soul, her voice is amazing, she has a good heart and a loving spirit. I want to watch her become a woman as well.
Brooke and Chason are little troublemakers...who wouldn't want to watch them grow up. Shannon needs my help with them, and I need to be there to help her. I can tell you this, having small children makes you have to get up, it makes you have to get going, it makes you force yourself to put one foot in front of the other...and you do it for them, to protect them, to teach them, to honor the fact that they are yours, or in your family.
I guess I will go back upstairs and lay in a bath of hot water, eucalyptus, epsom salts and rose bud leaf soaps floating around...some bubbles...burn a candle and hope I can not be a total baby when I get to Hoag in just a few hours.
I am a strong person...I know that even though I am an emotional wreck, I can do this...I can put on a face that appears to the outside world that I am okay, but I am not okay....I am not okay, okay?
It's not the procedure tomorrow...not the actual thing that is happening. I can deal with the physical thing of being there, getting there, sitting there, getting stuck with a big needle...it's what this test will reveal that is scaring the life out of me. I am petrified. My heart is breaking, my nose is running, my eyes are weeping, I want someone to wrap me up and tell me it isn't happening...not to me, not to me.
I remember thinking that I was the youngest girl, that I would outlive them all. I remember thinking that I hated that idea when I was younger...to be the one to live the longest. I already watched one sister pass, I was fearful of the possibility that I would live long enough to be the last...but I know now I won't. I guess I could, but it is unlikely...not with cancer. Not if it has taken up residence in my lungs!
It's like there is a bug crawling around inside my body, and I want it OUT. I don't care what they have to do to accomplish that, I just want it GONE! This very thought process is what has made me make bad decisions in the past...believe and trust all of the doctors. What? I need surgery, okay, What? I need chemo? Okay. What? I need radiation, OKAY! Do it all again? OKAY...just make it go away!
I am sticking to my guns this time. I want proof that it has spread. I want a pathology report that says that it is back before I jump in with both feet. Recurrence in my lungs means this...surgery...scary surgery to remove a wedge or more of my left lung. Radiation to hit any other lesions that can't be gotten in that surgery, and the dreaded CHEMO again to kill what remains in my body floating around.
Chemo that will take my hair. Radiation that makes me so ill. Pain from cutting into and removing another part of my body...this time a more important part. I can live without half my ass, but how do I live with half my lung? How does that feel? Will I be able to take deep breaths? Will I be able to swim underwater for as long? Will it hurt horribly?
I am afraid of the unknown. I am afraid of dying. I am afraid of leaving this world before my children have become who they will be. Leaving before they are succeeding at life. I am afraid of what me not surviving will do to them. How will they deal with it? I won't be there to help them be okay with it. Shit, I'm not okay with it. I want to see my grandchildren. I want to see Jackie's children and meet Jackie and Charlie's spouses. I want to see her pregnant, see her face when they hand her a beautiful little life, and she transforms from my baby into a mother, like her sister.
I want to see Charlie become a father, like his step-brother Casey. Casey became this awesome man, responsible, accomplished, a hard-working, Holli loving man. Father of FOUR boys....and he speaks of another, maybe a little girl in 5 years! And Cori...I want to see her walk down the aisle and be the successful person I know she can be...Joshua...OMG, Josh is going to be amazing in life! He has an old soul, I can't explain it, but I can see it in his eyes.
Today, I went and saw my oldest Granddaughter, Madeline sing. I know that she isn't as in to singing as we want her to be, but I think its because she doesn't believe that she is as talented as we all think she is, we all know she is! Wouldn't it be awesome if she became a famous opera singer? Alyza is just like Josh...an old soul, her voice is amazing, she has a good heart and a loving spirit. I want to watch her become a woman as well.
Brooke and Chason are little troublemakers...who wouldn't want to watch them grow up. Shannon needs my help with them, and I need to be there to help her. I can tell you this, having small children makes you have to get up, it makes you have to get going, it makes you force yourself to put one foot in front of the other...and you do it for them, to protect them, to teach them, to honor the fact that they are yours, or in your family.
I guess I will go back upstairs and lay in a bath of hot water, eucalyptus, epsom salts and rose bud leaf soaps floating around...some bubbles...burn a candle and hope I can not be a total baby when I get to Hoag in just a few hours.
I am a strong person...I know that even though I am an emotional wreck, I can do this...I can put on a face that appears to the outside world that I am okay, but I am not okay....I am not okay, okay?
The Night Before My Biopsy
I am sitting at home, trying not to think about tomorrow. Tomorrow when they are going to shove a extremely long and scary needle deep into my lungs...apparently, while I am AWAKE! The nurse called to tell me how to prepare for the procedure. She started explaining how I have to arrive at such and such a time, then they will start an IV, then she told me how I would be taken to the CT lab and while I am awake they will numb up the area, nick the skin with a scalpel...I stopped her. Wait, numb the area? Why? I will be under general anesthetic, why do I need numbing? Nope, wrong. No general. I need to be awake to take deep breaths, to be repositioned to go into the CT machine, etc.
After I expressed my anxiety about this info, she told me that they would give me Versaid, an amnesia effect type of drug, and something for anxiety to make me less anxious...but I will still be awake.
The lung, much like the outer layer of skin, has nerve endings, and they can't numb the lung, so I will feel the puncture...and some pressure. I will definitely need that anxiety stuff!
So I will be blogging after I get home tomorrow. If you are reading this when I post this to my blog, please keep me in your thoughts at 12:00 noon tomorrow.
Deep breaths. This will all work out.
HELP!
After I expressed my anxiety about this info, she told me that they would give me Versaid, an amnesia effect type of drug, and something for anxiety to make me less anxious...but I will still be awake.
The lung, much like the outer layer of skin, has nerve endings, and they can't numb the lung, so I will feel the puncture...and some pressure. I will definitely need that anxiety stuff!
So I will be blogging after I get home tomorrow. If you are reading this when I post this to my blog, please keep me in your thoughts at 12:00 noon tomorrow.
Deep breaths. This will all work out.
HELP!
Friday, February 3, 2012
Treadmill and Echo
Today I had my echocardiogram and the treadmill test. The last time I had a treadmill test, I was unable to complete it. They had to raise my heart rate up artifically, (with medication) which made me feel horrible. I was determined this time to keep up with the speed of the treadmill, and I did!
The echocardiogram, for those of you who don't know what it is, is an ultrasound video or test of the heart, they check the size of the muscle, the strength of the muscle, the flow of the blood and return of blood to the chambers in the heart. My heart has a defect. I have known this for a very long time. The little flap that opens and allows blood to flow out of the heart, and then closes to stop the blood from flowing back in is the part that has a problem. Last year, a cardiologist wanted to give me a pacemaker, which is just crazy because I have a perfectly working heart! Anyway, my little flap doesn't close all the way so it regurgitates apparently. Sounds icky.
But both tests were successful, and both had good outcomes, so I am going forward with the biopsy on Monday. I am still crazy with fear, but the crying last night helped me release a lot of tension. Then I took a long hot bath with Eucalyptus Essential Oils and Epsom Salts. I added some non-fat dry milk, which makes it a milk bath at the end to soften my skin. (The emsulsifiers in the milk are still present in milk when it is dried).
I burned some candles, played some classical music, burned incense and emerged refreshed and done crying...of course I cried again this morning, but last night...I slept like a baby, so deep and woke up totally refreshed and feeling great! I recommend this for anyone who has had a hard day!
More later!
The echocardiogram, for those of you who don't know what it is, is an ultrasound video or test of the heart, they check the size of the muscle, the strength of the muscle, the flow of the blood and return of blood to the chambers in the heart. My heart has a defect. I have known this for a very long time. The little flap that opens and allows blood to flow out of the heart, and then closes to stop the blood from flowing back in is the part that has a problem. Last year, a cardiologist wanted to give me a pacemaker, which is just crazy because I have a perfectly working heart! Anyway, my little flap doesn't close all the way so it regurgitates apparently. Sounds icky.
But both tests were successful, and both had good outcomes, so I am going forward with the biopsy on Monday. I am still crazy with fear, but the crying last night helped me release a lot of tension. Then I took a long hot bath with Eucalyptus Essential Oils and Epsom Salts. I added some non-fat dry milk, which makes it a milk bath at the end to soften my skin. (The emsulsifiers in the milk are still present in milk when it is dried).
I burned some candles, played some classical music, burned incense and emerged refreshed and done crying...of course I cried again this morning, but last night...I slept like a baby, so deep and woke up totally refreshed and feeling great! I recommend this for anyone who has had a hard day!
More later!
Thursday, February 2, 2012
Appointment Set!
My biopsy for my left lung has been set for Monday. I just got all the instructions and found out that because of the depth of the nodule, it will be under general anesthetic. I have to have a treadmill test tomorrow and echo cardiogram.
They told me that I have to have someone drive me home from the biopsy and that after the procedure, I will have to stay at the hospital for 6 - 8 hours, then the person driving me home, has to stay with me overnight. They say not to be alarmed if I cough up blood after the procedure. Not only are they doing the biopsy, but they are also placing two coils at the site of the two larger sized nodules so that they can easily find them when they do the surgery to remove them about a week later. That hospitalization will be about 10 days, or more.
The surgery and biopsy will be done at the main hospital. Hoag, in Newport Beach. The radiologist will do the biopsy but the surgery will be done by Dr. Zusman.
This is all very surreal to me. I am so frightened now. I think I am going to start crying soon. It is all starting to be real to me. I hope I don't freak out too much...
They told me that I have to have someone drive me home from the biopsy and that after the procedure, I will have to stay at the hospital for 6 - 8 hours, then the person driving me home, has to stay with me overnight. They say not to be alarmed if I cough up blood after the procedure. Not only are they doing the biopsy, but they are also placing two coils at the site of the two larger sized nodules so that they can easily find them when they do the surgery to remove them about a week later. That hospitalization will be about 10 days, or more.
The surgery and biopsy will be done at the main hospital. Hoag, in Newport Beach. The radiologist will do the biopsy but the surgery will be done by Dr. Zusman.
This is all very surreal to me. I am so frightened now. I think I am going to start crying soon. It is all starting to be real to me. I hope I don't freak out too much...
Wednesday, February 1, 2012
Visit to the Lung Surgeon
Today I met with Dr. Zusman at Hoag Hospital. He is also a cancer survivor and I really liked him and his staff. He will be the one performing any lung surgery I need.
To begin with he verified my history, actually spent about 20 minutes talking "with" me about my past, starting from the first diagnosis of cancer in 2007. He walked with me through all of my surgeries, radiation appointments and doctors.
His feeling is that this nodule, based on my history is cancer, but is doing a fine needle biopsy first. The results of that will be in in about five days and based on that pathology, I will be scheduled for surgery.
The surgery will be performed at Hoag Hospital, the same place as the biopsy. My biopsy will be done on Monday or Tuesday...just six days from today. I was totally way over-emotional when I left the doctor, but now that I am home, I am amazingly calm.
To begin with he verified my history, actually spent about 20 minutes talking "with" me about my past, starting from the first diagnosis of cancer in 2007. He walked with me through all of my surgeries, radiation appointments and doctors.
His feeling is that this nodule, based on my history is cancer, but is doing a fine needle biopsy first. The results of that will be in in about five days and based on that pathology, I will be scheduled for surgery.
The surgery will be performed at Hoag Hospital, the same place as the biopsy. My biopsy will be done on Monday or Tuesday...just six days from today. I was totally way over-emotional when I left the doctor, but now that I am home, I am amazingly calm.
Wednesday, January 25, 2012
Lung Nodules
Today is January 25, 2012. It has been five years since I was diagnosed with cancer. I have lived through two different types of chemo, two different types of radiation. I have had too many surgeries. My body went from being fairly decent for a 50 year old to fairly scarred for a 55 year old.
Today I found out I had lung nodules. Fun. I haven't heard about those before...well, not as it pertains to me. It may be nothing, or it may be something bad. Something that will require chemo, again. Not the clinical trial stuff, the AIM stuff. Adriamyacin, Ifosfamide and Mensa for you chemo newbys. The chemo that makes my hair fall out in record fashion.
Surgery. First a biopsy to confirm cancer and then surgery to remove the lower left portion of my lung.
For now, it's antibiotics for 10 days to see if the "nodules" shrink and disappear. Apparently, the doctor doesn't think that is likely, but it gives me time to do some research and find out what I am up against.
This time, I won't go in blind. I won't take their word for it. I want to see proof of disease. Proof that the cancer has returned...not someone's word, not a "specialists" word. Pathology reports that state that I have a new cancer in my lungs. Then I will take that pathology to another doctor and have them agree that I do in fact have cancer. If there isn't a clear agreement between doctors and pathology reports, I am going to do what is best for me...which is refuse treatment until I feel confident that they are correct.
Keep posted for updates and thanks for your interest!
Sandy
Today I found out I had lung nodules. Fun. I haven't heard about those before...well, not as it pertains to me. It may be nothing, or it may be something bad. Something that will require chemo, again. Not the clinical trial stuff, the AIM stuff. Adriamyacin, Ifosfamide and Mensa for you chemo newbys. The chemo that makes my hair fall out in record fashion.
Surgery. First a biopsy to confirm cancer and then surgery to remove the lower left portion of my lung.
For now, it's antibiotics for 10 days to see if the "nodules" shrink and disappear. Apparently, the doctor doesn't think that is likely, but it gives me time to do some research and find out what I am up against.
This time, I won't go in blind. I won't take their word for it. I want to see proof of disease. Proof that the cancer has returned...not someone's word, not a "specialists" word. Pathology reports that state that I have a new cancer in my lungs. Then I will take that pathology to another doctor and have them agree that I do in fact have cancer. If there isn't a clear agreement between doctors and pathology reports, I am going to do what is best for me...which is refuse treatment until I feel confident that they are correct.
Keep posted for updates and thanks for your interest!
Sandy
Thursday, December 15, 2011
Update December 2011
Since I last posted, I had to have a bone tumor removed from my femur, and then Dr. Brien added a plate and rod up to the hip joint. That was in August or September. I have just seen Dr. Brien Monday this week. I told him my legs hurt all the time, I no longer take any pain killers except over the counter meds, he gave me Tylenol #3, just 20, to help me through this current pain. He referred me to a vascular surgeon, his sister, Heather Brien at Hoag. He is ordering an MRI of my entire left leg because he felt a lot of lumps and bumps.
He did some blood work and listened to my heart and chest, told me to take a deep breath, and then I remembered, as I doubled over in pain, I can't do that! It always hurts when I take a deep breath on the right side.
His office called and said my blood was crappy, platelets still low and that I apparently have some liver/pancreas and gall bladder problems because the stent in my biliary duct shifted, which is why I can't take a deep breath without pain.
Oh what fun cancer is!
He did some blood work and listened to my heart and chest, told me to take a deep breath, and then I remembered, as I doubled over in pain, I can't do that! It always hurts when I take a deep breath on the right side.
His office called and said my blood was crappy, platelets still low and that I apparently have some liver/pancreas and gall bladder problems because the stent in my biliary duct shifted, which is why I can't take a deep breath without pain.
Oh what fun cancer is!
Sunday, May 29, 2011
Preparing to Fire my Doctor
I am so ready to fire my oncologist's office. Not really the doctor himself, but his staff.
I think they know I am upset because they welcome me, and treat me like a queen....I'm never treated like this. The doctor gets me cooffee and offers me lunch.
He tells me how lucky I am to get into this new clinical trial run by Handifer. I am not impressed. He says he wants me to go see Dr. Brien for the tumor on the right side. He is sticking to the story that I need to go see Brien, so I am going there. He offers to pay for two nights at the hotel with Vicki (just give her the receipt). I am not doing that. I am mad.
I am angry, confused, wondering what they have done to my body all this past year! I know when I get to Brien, I will get Dr. Forcsher....I have heard of him.
The doctor gets the scan and MRI and doesn't like them, he wants the ones from his office. I told him I was leaving to see Dr. Brien and will talk to him later. I again noticed the weird new file for me...I thinking that they are amending it. Lucky me, I have a blog that I wrote that has the history from my point of view.
I think they know I am upset because they welcome me, and treat me like a queen....I'm never treated like this. The doctor gets me cooffee and offers me lunch.
He tells me how lucky I am to get into this new clinical trial run by Handifer. I am not impressed. He says he wants me to go see Dr. Brien for the tumor on the right side. He is sticking to the story that I need to go see Brien, so I am going there. He offers to pay for two nights at the hotel with Vicki (just give her the receipt). I am not doing that. I am mad.
I am angry, confused, wondering what they have done to my body all this past year! I know when I get to Brien, I will get Dr. Forcsher....I have heard of him.
The doctor gets the scan and MRI and doesn't like them, he wants the ones from his office. I told him I was leaving to see Dr. Brien and will talk to him later. I again noticed the weird new file for me...I thinking that they are amending it. Lucky me, I have a blog that I wrote that has the history from my point of view.
Update for three months! Arrrggghhhhh!
Wow. I did not realize it has been months since I wrote last. A lot has happened. I was doing radiation, but that is all over now. I had a follow-up scan with Chawla's office and they scared me. Instead of saying that the tumors in my right buttock were "stable" as usual, this time I heard Dr. Chawla say that he saw a definite progression of my disease in my right muscle, right above the knee.
He examined me and asked if I could feel it. When he was pushing in, I thought, okay maybe, but I really didn't feel anything much...just discomfort from him poking me. Dr. Chawla and Vicki had me sign paperwork for a new clinical trial that was two days a week. Called EI, or Eribulin. I read up on it and I had to agree to get it and show up every week. They said I had to wait to come back till 21 days had passed since radiation and I had to present with a good blood test.
I went home, and had a blood test about a week later. My blood work was not good. So no clinical trial. A week later, again no good blood....platelets just aren't behaving. Doctor Chawla wants me to come down and sign for a new clinical trial, which requires 3 days a week....every other day! They can't fax the paperwork and I can't find it online, but apparently, it doesn't screw with my platelets, and it will be a good one for me, but what a commitment I have to make! Monday, Wednesday and Friday every week, for 4 to 5 hours a day, for a minimum of 4 months.
Finally I have a good blood work and I get ready to head down for my first session.
I get an hotel for a week at the Hampton Inn in Carson. I went to go get Kathy to be with me. And I had to bring Molly too. I couldn't expect someone to just watch her for me. I walk in on Monday, bright and early. Vicki, in her usual bad mood says what'you doing here? I'm like....I had good blood, you said get a hotel for a week, I'm starting the new chemo! She looks at me like I am crazy and says you haven't even signed the paperwork yet.
Vicki had tells me on the phone that "maybe they made a mistake"....I'm freaked out....what do you mean mistake????? I asked. She said the tumors we saw on the right buttock have melted into cysts, so your cancer might be gone. I'm confused!....what about the bone marrow and the right side leg that could have surgery with major complications to get that lesion out with clear margins. I had visions of them amputating my right leg above the knee. And with this news, I would think they would be a little more compassionate.
So I go in to see Chawla and when I questioned him about the trial he said "don't you want me to be sure?" Hello, YES, I want him to be sure.
I had to come back the following day. Doctor Hendifer meets me in the waiting area...the lobby to tell me that I only had cysts all along, no cancer, and that I should be happy.
I saw the doctor and told him what Vicki said, then what Handifer said and Dr. Chawla says that this whole time I was being treated for the residual tumor on my left side. He tells me he want s to pay for my hotel room because of all the misconconfusion. He even started to reach for his wallet.
I don't want to cut ties with this doctor, but I am definitely going to remember that he treated me for a year with Yondelis and radiation all to find out....I didn't have a metastates to begin with!
He examined me and asked if I could feel it. When he was pushing in, I thought, okay maybe, but I really didn't feel anything much...just discomfort from him poking me. Dr. Chawla and Vicki had me sign paperwork for a new clinical trial that was two days a week. Called EI, or Eribulin. I read up on it and I had to agree to get it and show up every week. They said I had to wait to come back till 21 days had passed since radiation and I had to present with a good blood test.
I went home, and had a blood test about a week later. My blood work was not good. So no clinical trial. A week later, again no good blood....platelets just aren't behaving. Doctor Chawla wants me to come down and sign for a new clinical trial, which requires 3 days a week....every other day! They can't fax the paperwork and I can't find it online, but apparently, it doesn't screw with my platelets, and it will be a good one for me, but what a commitment I have to make! Monday, Wednesday and Friday every week, for 4 to 5 hours a day, for a minimum of 4 months.
Finally I have a good blood work and I get ready to head down for my first session.
I get an hotel for a week at the Hampton Inn in Carson. I went to go get Kathy to be with me. And I had to bring Molly too. I couldn't expect someone to just watch her for me. I walk in on Monday, bright and early. Vicki, in her usual bad mood says what'you doing here? I'm like....I had good blood, you said get a hotel for a week, I'm starting the new chemo! She looks at me like I am crazy and says you haven't even signed the paperwork yet.
Vicki had tells me on the phone that "maybe they made a mistake"....I'm freaked out....what do you mean mistake????? I asked. She said the tumors we saw on the right buttock have melted into cysts, so your cancer might be gone. I'm confused!....what about the bone marrow and the right side leg that could have surgery with major complications to get that lesion out with clear margins. I had visions of them amputating my right leg above the knee. And with this news, I would think they would be a little more compassionate.
So I go in to see Chawla and when I questioned him about the trial he said "don't you want me to be sure?" Hello, YES, I want him to be sure.
I had to come back the following day. Doctor Hendifer meets me in the waiting area...the lobby to tell me that I only had cysts all along, no cancer, and that I should be happy.
I saw the doctor and told him what Vicki said, then what Handifer said and Dr. Chawla says that this whole time I was being treated for the residual tumor on my left side. He tells me he want s to pay for my hotel room because of all the misconconfusion. He even started to reach for his wallet.
I don't want to cut ties with this doctor, but I am definitely going to remember that he treated me for a year with Yondelis and radiation all to find out....I didn't have a metastates to begin with!
Saturday, February 26, 2011
5:45 am
I cannot believe I am up at this unreasonable hour. It starts promptly at about this time every morning. I am sleeping soundly, enjoying the last of my warm bed, the sun is just breaking through the clouds and and daylight just appearing. It's the part of living in this far away place that I like...until, of course CRIKIT wakes me up with her incessant kitty at sounding tap tap tap tap tap tap tap tap tap tap tap....Mommy mommy mommy it looks like outside,please come open the door so we can see you, get in your warm bed and say good morning and then meow until I am forced from bed to go get them breakfast.
Why can't I teach my animals to open doors, feed themselves. empty their own litter box and water themselves? How hard can it be? Molly gets excited when they wake up and scratch at the door....and god forbid I decide to move my shoes or grab my pants because I am COLD because THAT leads these frolicking furry pets to think that it the best of part of the day...time for Mom to get dressed in like 4 layers of clothes and take Molly out to the mountain to fun and play
My favorite part of Saturday is one thing....NO RADIATION toaday! My back still aches from yanking the side handle from my van off and landing about 3 feet from the van last week. Anyone want to volunteer a massage for my hurting back?
Still.....It's Saturday!
Why can't I teach my animals to open doors, feed themselves. empty their own litter box and water themselves? How hard can it be? Molly gets excited when they wake up and scratch at the door....and god forbid I decide to move my shoes or grab my pants because I am COLD because THAT leads these frolicking furry pets to think that it the best of part of the day...time for Mom to get dressed in like 4 layers of clothes and take Molly out to the mountain to fun and play
My favorite part of Saturday is one thing....NO RADIATION toaday! My back still aches from yanking the side handle from my van off and landing about 3 feet from the van last week. Anyone want to volunteer a massage for my hurting back?
Still.....It's Saturday!
Tuesday, February 22, 2011
After first day of radiation...
I am home, but got sick on my way back home. At first, I felt good, well not great, but I felt hungry, so I ate, and then my ride wanted to stop at the grocery store so I went to get a roll of quarters for laundry and practically knocked over a guy getting to the bathroom quick enough to avoid a "clean-up on aisle 2"...lol.
I tried eating a few small bites of food at home but once again did not feel well and laid down in a warm bath for about 1/2 hour. That felt good. Then I tried some butternut squash soup from Laura and Paul....just a few bites, then I waited. About 30 minutes later I tried another couple bites with a half a slice of bread. That was it for me...not a lot for a whole day for eating, but I will do better tomorrow.
What I am most worried about is the energy and life sucking effect that radiation has on me. It also screws with my organs near the area of the tumor.
It's times like this that I wish I had someone to put their arms around me through the night. Someone to put comforting arms around me at night to let me know I am safe, for the next few hours. Molly frequently jumps up and gets in front of me and I am quite surprised to find a big warm hairy dog in bed with me, however, it's not exactly what I am looking for....but my best friend does try, but she's still a dog.
Thanks for reading. I'll keep up with the posting with the rest of my battle with sarcoma.
One thing is certain....SARCOMA DOES NOT DEFINE ME!
I tried eating a few small bites of food at home but once again did not feel well and laid down in a warm bath for about 1/2 hour. That felt good. Then I tried some butternut squash soup from Laura and Paul....just a few bites, then I waited. About 30 minutes later I tried another couple bites with a half a slice of bread. That was it for me...not a lot for a whole day for eating, but I will do better tomorrow.
What I am most worried about is the energy and life sucking effect that radiation has on me. It also screws with my organs near the area of the tumor.
It's times like this that I wish I had someone to put their arms around me through the night. Someone to put comforting arms around me at night to let me know I am safe, for the next few hours. Molly frequently jumps up and gets in front of me and I am quite surprised to find a big warm hairy dog in bed with me, however, it's not exactly what I am looking for....but my best friend does try, but she's still a dog.
Thanks for reading. I'll keep up with the posting with the rest of my battle with sarcoma.
One thing is certain....SARCOMA DOES NOT DEFINE ME!
Radiation
Sorry for the long time without writing. I was so tired of complaining and sounding so pitiful. But I got a few notes from people saying they missed my blog, so I decided to start writing again.
So apparently the clinical trial I was on was not working because I have a significant new tumor in the site of the primary tumor. They decided to let me do the radiation here near my new apartment. For right now they are saying it will be 10 weeks of daily radiation...well, except when the office is closed, like Saturday and Sunday.
Radiation the last time was quite hard on me, it made me sicker than chemo. I had physical problems as well, so I am afraid of radiation. I know its stupid, but I keep hoping someone has made a mistake and I actually don't have cancer. You see, there are stages after getting the news you have cancer. I started writing the order of what I think the stages are when it dawned on me, I don't the order! I started with shock and emotional breakdown. Then I went to denial. Then I went to the part I thought I would be the one that would survive and never have any sign of cancer again. Then I went back to denial again, then emotional breakdown and now I seem to go day to day with one the above.
So, my next post will be in about 4 hours. After I have gone to radiation (9 different directions of radiation) and promise to write regularly again, if you will promise to read my blog. Also, comments on my blogs are always welcomed!
Love you all! Keep me in your thoughts at 2:30 today!
Sandy
So apparently the clinical trial I was on was not working because I have a significant new tumor in the site of the primary tumor. They decided to let me do the radiation here near my new apartment. For right now they are saying it will be 10 weeks of daily radiation...well, except when the office is closed, like Saturday and Sunday.
Radiation the last time was quite hard on me, it made me sicker than chemo. I had physical problems as well, so I am afraid of radiation. I know its stupid, but I keep hoping someone has made a mistake and I actually don't have cancer. You see, there are stages after getting the news you have cancer. I started writing the order of what I think the stages are when it dawned on me, I don't the order! I started with shock and emotional breakdown. Then I went to denial. Then I went to the part I thought I would be the one that would survive and never have any sign of cancer again. Then I went back to denial again, then emotional breakdown and now I seem to go day to day with one the above.
So, my next post will be in about 4 hours. After I have gone to radiation (9 different directions of radiation) and promise to write regularly again, if you will promise to read my blog. Also, comments on my blogs are always welcomed!
Love you all! Keep me in your thoughts at 2:30 today!
Sandy
Tuesday, January 11, 2011
FDA Recalls
I am back having chemo. It has been six weeks since my last chemo, so since the cut off is six weeks, it had to go yesterday, which it did. My blood barely cleared the requirements. I was so very sick last night. The nausea drugs that I had been taking before, Emend and Sancusco Patch have been discontinued, or recalled by the FDA...makes me wonder about the safety of those drugs that I took everytime I had chemo since April.
So I laid in a tub last night, sick sick sick from the effects of chemo. I feel horrible and the doctor was rude to me when he came in the room. First, I waited two hours to see the secondary doctor, Dr. Handifer. He came in and because I had gotten a prescription filled by a doctor 215 miles away 30 days before one time, he said he couldn't write the script for my meds because I have too many doctors. I was so upset. I told him, the guy I saw up north was a GP and was a one time doctor just for the meds, and Chawla's office told me to go there until I got back down south. He left me in the room for another hour because he had a more important patient....I guess I am not important.
Well, I have to take a shower and head back to the doctors to stop chemo.
Later!
Friday, December 3, 2010
Upper right quadrant pain
Today and for the last two days I have been suffering from upper right quadrant pain. I don't think it is a blockage, but it is hurting. I think it may be from throwing up so much from chemo. All I know if that I feel like crap...I liked my apartment until I got the internet guy here and he had me unload three bookcases and move them, to not have to have me move them at all. He cut a hole in my wall and I was afraid of spiders coming in, so a neighbor put silicone in the hole today. I ended up on the couch, with my messy apartment around me. I wish the internet guy would come back and put my bookcases back and then replace all the books back on them.
Well, one of my friends is going to get a cat scan. She has just found out she has cancer, so I am going with her to hold her hand...God knows I know about what she will be going through.
I have a re-certification for social security disability, which is more than 10 pages....dates, diagnosis, treatments, etc., how am I supposed to remember that crap?
Until later.
Well, one of my friends is going to get a cat scan. She has just found out she has cancer, so I am going with her to hold her hand...God knows I know about what she will be going through.
I have a re-certification for social security disability, which is more than 10 pages....dates, diagnosis, treatments, etc., how am I supposed to remember that crap?
Until later.
Monday, November 29, 2010
Chemo
Hello everyone.
I am here at Dr. Chawla's to get chemo. I always get a tummy ache before I come here...the morning of, actually and this morning was no different. They are running about trying to find my blood work results....acting as though they don't have them. Geeze...they are freaking me out.
I had an excellent visit with my darling grandkids yesterday. Brooke is such a character, she couldn't stop talking. She told me about halloween, and about her best friend Makayla. She also told me all of her teacher's names...she apparently loves preschool. Alyza came and sat on my lap, she is getting so big! When I was leaving she was fixing her hair in the mirror...it was poofy, but it was actually beautiful...she's so silly...she's growing up! Maddy came out briefly to say hello and give me a hug. The littlest guy, Chason has quite a personality. He was trying to do somersaults in the living room, making me laugh by scooting around on his head. He was a little wary of me at first, but warmed up quickly. It was so nice to see them all.
I got to see Shannon's photography. If you guys haven't already checked it out, please do. If you need professional photo's taken, see Shannon. She has honed her talents and does spectacular work! She had a client last night....at the beach at sunset. I am itching to see the shots she took.
I spent Thanksgiving with my parents, and then went to my sister, Diane's daughter's house. Nicole and Carlos had made their first turkey dinner and it was delicious. My dad made the turkey at Mom and Dad's house. We had some luscious sweet potatoes...one type with pecan's and brown sugar topping the baked goodness and another dish of sweet potatoes with a marshmallow topping. Dad also made stuffing inside the bird, which is my favorite, and Nicole had stuffing outside the bird. All in all, it was a wonderful Thanksgiving.
So, I am getting my chemo...God, I hate this. I will be sick tonight because I don't have a patch for nausea. I forgot it at home, but it falls off within a day or two anyway.
Sorry for the long span between postings. My internet connection will be hooked up later this week, so I will be better at it, I promise.
Here comes the icky chemo... watch it as it slides down the tubing into my body. Something from a sea squirt...that's what Yondelis is. I saw a sea squirt on a discovery channel yesterday....they are NOT pretty animals...they are brown and ugly, but I guess they have a property that keeps my tumors from growing, so I do what I must.
I guess this is all for now. I hate this part.
Tuesday, November 2, 2010
Another Scan
I had another scan today. I will find out the results later this week or early next week. I don't have time to worry this time because I am moving this week. I am moving 200 miles away from all family and friends. So, I won't know if it is the scan or the move that worries me the most.
Today I am renting a storage space just around the corner from the apartment and putting everything I don't have room for. I haven't moved in years, so this move is quite traumatic.
I have to rent a truck for Thursday and Friday and move all of my things by the weekend. Luckily, Wyatt is here to help me move, otherwise, I would have to hire a moving company...which I can't afford.
The only weird thing going on with my cancer is that I have a sore in my mouth. I haven't had one of those forever...I guess I have to call the doctor and let them know.
Busy packing...write more later.
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