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!
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