Trisha's Cancer Expenses
Donation protected
Shortly after turning 40, I was noticing that I was slowly gaining weight, even though I lived at the gym. I always felt run down. I’d lose my voice without having a cold. I was having trouble sleeping, so I started to keep track of my diet, exercise and sleep pattern. Nothing changed what was going on, and every doctor I spoke to assured me this is what happens after women turn 40 or else just brushed me off.
Eventually, I had a doctor run bloodwork/labs on me. She informed me they were fine and nothing was wrong with me. I literally told her that I could say I had aliens coming out of my butt-and she would say I was fine.
Several months later, after having passed a kidney stone, another doctor told me he had looked at the results of the previously done labs, and he didn’t like the results. He said I definitely had hypothyroidism. He asked if he could do some tests on me. I gladly said yes. The very first thing he did was feel my neck, upon which he discovered that my thyroid gland felt huge. Ultrasounds led to fine needle biopsies, which revealed I had thyroid cancer.
Up till that point, I only believed that the thyroid gland was something that controlled your weight. I was very wrong. In a nutshell, the thyroid gland-located in the front of your neck below your Adam’s apple-makes hormones that control the way your body uses energy, affects almost every organ in the body and is responsible for the function of every cell in your body. And mine was very unhappy.
Surgery to remove my thyroid and any nodules/cancerous looking masses would be performed followed by RAI treatment. Radioactive iodine ablation-RAI/I-131,is what is used for thyroid cancer, not chemo. It targets only thyroid cells anywhere in the body and destroys any it finds. Even after the thyroid is removed, some thyroid tissue and cells remain.
When I first told the head person of my employer’s human resource department that I would be going out for thyroid cancer, she smiled brightly at me and told me that was ‘the good cancer’ to get if you had to get cancer. She told me her college roommate had it, and it was no big deal at all. I would be back at work in just a couple months she informed me. Not a chance.
Yes, thyroid cancer is one that has a good prognosis and high survival rate generally but there is more to that. I received a very high dose of RAI, which is given to you in the hospital in the form of a pill. It’s brought into the hospital by an outside facility that deals with the radioactive material. It shows up in what looks like a series of metal nesting dolls. Finally the pill is dropped into a cup and given to the patient with a cup of water, while the nurse hides behind a partition. The second you have swallowed the pill-you are booted out of the hospital with certain instructions.
You are now radioactive. You must isolate yourself from your family, pets, other people for generally three to five days.(for pets, small children and pregnant women-the isolation time is much longer). You’re given a card stating you have been given a radioactive material in case you plan on traveling, because you will set off alarms at airports, certain tunnels and other places of travel. You must make sure to not use utensils that other will use. Plastic works best. You must flush the toilet several times after every use, shower often to help wash away the RAI that comes out in your sweat and saliva. Bed sheets must be washed over and over or thrown away. Also, your trash must be separated and there is a chance it could set off alarms with the waste disposal company.
It turned out that I was one of the 4 percent that is resistant to the RAI treatment. But,I still suffered from all the side effects-extreme neck pain, nausea, vomiting, loss of taste, dry mouth and eyes, and pain in salivary glands are just a few.
Other side effects from having my thyroid removed and being put on a synthetic thyroid hormone pill to try and mimic having a thyroid were extreme fatigue, memory and concentration problems, hair loss, muscle weakness, heart palpitations, high blood pressure, anxiety, depression, extreme mood swings, joint pain, tingling and numbness in hands and feet…the list goes on.
They also discovered that my thyroid cancer was worse than they previously knew. My thyroid gland had been huge and contained a two-inch malignant tumor. It was all very attached to my trachea and strap muscles. This explained why I was having so much trouble breathing, swallowing, losing my voice and when I slept-I felt as if I were being choked. They told me I had RAI resistant metastatic papillary carcinoma with hurthle cells present, extranodal extensions and heterotrophic ossification.
To break that down, my cancer would not respond to treatment. it would spread, it would sometimes be as hard as a rock and it would attach to anything it came in contact to and not just stay within my neck.
My first surgery was in January of 2014 followed by RAI in March 2014. Normally, this would work for most all thyroid cancer patients, with the chance of it returning years and years down the road. Within six months, my cancer markers showed that I had cancer growing somewhere.
Trisha Cavosi as she was healing from her cancer surgery. Image courtesy of Trisha Cavosi.
My second surgery was set for January of 2015. I was to have a bilateral central neck dissection. Two days before the surgery, my surgeon called me and told me she wasn’t comfortable doing my surgery because my case was so unusual. I was instructed to seek counsel from one of the best cancer doctors on the east coast. (I had been previously treated at Lehigh Valley hospitals. I was sent to the University of Penn in Philadelphia).
My second surgery ended up being done in April of 2015. Eighteen lymph nodes along with parts of my strap muscles were removed. After my first surgery I had developed asthma and a very raspy voice. if I talked more than ten minutes I’d experience pain and voice loss. In the second surgery my surgeon discovered that my right vocal cord had been paralyzed in the first surgery. I went home to recuperate the day after surgery, only to end up in the ER when my left lung partially collapsed. I’m on two inhalers now and pills to help my breathe normally.
Also, the list of pills I now take is incredible. I joke all the time that I could start a pharmacy out of my own home. My life is constant doctor appointments and tests. Luckily my husband has stood by me through all of this from day one and he is the rock I cling to constantly. My medications are always being changed as they try to find the right balance and keep my numbers virtually undetectable in order to help slow the cancer growth.
I’ve lost almost every friend I used to have from the depression, anxiety, weight gain and fear of the cancer returning basically keeps me a prisoner in my own home. Before, I was extremely outgoing, bubbly and always smiling people told me. Now, I am a shell of my former self.
The guilt is the worst thing I believe. I have such guilt because I feel as if this is all my fault, the constant fear and worry that I am putting my husband through, when I wake up from my surgeries and he is crying at my bedside. How I catch him staring at me sometimes as if he’s afraid to close his eyes and I will be gone. Some days, the guilt immobilizes me and the fear of when my cancer will return is too much.
Most of the time, I really try to be positive and upbeat. I don’t want my husband to know how much I’m hurting inside and I don’t want to cause him more pain. When I do see people that know or find out I have cancer, often I am questioned as to why I still have most of my hair and why I am not skinny from the chemo they think all cancer patients are treated by. I never know exactly how to respond. ‘I’m sorry I don’t look like Gallum from Lord of the Rings??’
Talking to others with thyroid cancer helps a little, but I usually find myself being bitter and resentful because they had one surgery-treatment-and have been good ever since.
Six months that is all I got. Six months and it had already spread. When I go to the cancer hospital in Philly I look across the street at the Children’s Hospital. There are bright colored balloons and hand made signs hanging in the windows. I stop and tell myself that if those poor angels are dealing with cancer at such a young age, then I have no right to be bitter and resentful about anything. I take a deep breath, squeeze my husband’s hand and tell myself that I will keep fighting. Cancer will not take away my spirit, my love for God, and the true love and kindness of my husband that I have been blessed with. Not to mention, I have five kitties at home and they are depending on me as well.
‘Better to die standing than on your knees.’ I like that saying. It gives me strength.”
Eventually, I had a doctor run bloodwork/labs on me. She informed me they were fine and nothing was wrong with me. I literally told her that I could say I had aliens coming out of my butt-and she would say I was fine.
Several months later, after having passed a kidney stone, another doctor told me he had looked at the results of the previously done labs, and he didn’t like the results. He said I definitely had hypothyroidism. He asked if he could do some tests on me. I gladly said yes. The very first thing he did was feel my neck, upon which he discovered that my thyroid gland felt huge. Ultrasounds led to fine needle biopsies, which revealed I had thyroid cancer.
Up till that point, I only believed that the thyroid gland was something that controlled your weight. I was very wrong. In a nutshell, the thyroid gland-located in the front of your neck below your Adam’s apple-makes hormones that control the way your body uses energy, affects almost every organ in the body and is responsible for the function of every cell in your body. And mine was very unhappy.
Surgery to remove my thyroid and any nodules/cancerous looking masses would be performed followed by RAI treatment. Radioactive iodine ablation-RAI/I-131,is what is used for thyroid cancer, not chemo. It targets only thyroid cells anywhere in the body and destroys any it finds. Even after the thyroid is removed, some thyroid tissue and cells remain.
When I first told the head person of my employer’s human resource department that I would be going out for thyroid cancer, she smiled brightly at me and told me that was ‘the good cancer’ to get if you had to get cancer. She told me her college roommate had it, and it was no big deal at all. I would be back at work in just a couple months she informed me. Not a chance.
Yes, thyroid cancer is one that has a good prognosis and high survival rate generally but there is more to that. I received a very high dose of RAI, which is given to you in the hospital in the form of a pill. It’s brought into the hospital by an outside facility that deals with the radioactive material. It shows up in what looks like a series of metal nesting dolls. Finally the pill is dropped into a cup and given to the patient with a cup of water, while the nurse hides behind a partition. The second you have swallowed the pill-you are booted out of the hospital with certain instructions.
You are now radioactive. You must isolate yourself from your family, pets, other people for generally three to five days.(for pets, small children and pregnant women-the isolation time is much longer). You’re given a card stating you have been given a radioactive material in case you plan on traveling, because you will set off alarms at airports, certain tunnels and other places of travel. You must make sure to not use utensils that other will use. Plastic works best. You must flush the toilet several times after every use, shower often to help wash away the RAI that comes out in your sweat and saliva. Bed sheets must be washed over and over or thrown away. Also, your trash must be separated and there is a chance it could set off alarms with the waste disposal company.
It turned out that I was one of the 4 percent that is resistant to the RAI treatment. But,I still suffered from all the side effects-extreme neck pain, nausea, vomiting, loss of taste, dry mouth and eyes, and pain in salivary glands are just a few.
Other side effects from having my thyroid removed and being put on a synthetic thyroid hormone pill to try and mimic having a thyroid were extreme fatigue, memory and concentration problems, hair loss, muscle weakness, heart palpitations, high blood pressure, anxiety, depression, extreme mood swings, joint pain, tingling and numbness in hands and feet…the list goes on.
They also discovered that my thyroid cancer was worse than they previously knew. My thyroid gland had been huge and contained a two-inch malignant tumor. It was all very attached to my trachea and strap muscles. This explained why I was having so much trouble breathing, swallowing, losing my voice and when I slept-I felt as if I were being choked. They told me I had RAI resistant metastatic papillary carcinoma with hurthle cells present, extranodal extensions and heterotrophic ossification.
To break that down, my cancer would not respond to treatment. it would spread, it would sometimes be as hard as a rock and it would attach to anything it came in contact to and not just stay within my neck.
My first surgery was in January of 2014 followed by RAI in March 2014. Normally, this would work for most all thyroid cancer patients, with the chance of it returning years and years down the road. Within six months, my cancer markers showed that I had cancer growing somewhere.
Trisha Cavosi as she was healing from her cancer surgery. Image courtesy of Trisha Cavosi.
My second surgery was set for January of 2015. I was to have a bilateral central neck dissection. Two days before the surgery, my surgeon called me and told me she wasn’t comfortable doing my surgery because my case was so unusual. I was instructed to seek counsel from one of the best cancer doctors on the east coast. (I had been previously treated at Lehigh Valley hospitals. I was sent to the University of Penn in Philadelphia).
My second surgery ended up being done in April of 2015. Eighteen lymph nodes along with parts of my strap muscles were removed. After my first surgery I had developed asthma and a very raspy voice. if I talked more than ten minutes I’d experience pain and voice loss. In the second surgery my surgeon discovered that my right vocal cord had been paralyzed in the first surgery. I went home to recuperate the day after surgery, only to end up in the ER when my left lung partially collapsed. I’m on two inhalers now and pills to help my breathe normally.
Also, the list of pills I now take is incredible. I joke all the time that I could start a pharmacy out of my own home. My life is constant doctor appointments and tests. Luckily my husband has stood by me through all of this from day one and he is the rock I cling to constantly. My medications are always being changed as they try to find the right balance and keep my numbers virtually undetectable in order to help slow the cancer growth.
I’ve lost almost every friend I used to have from the depression, anxiety, weight gain and fear of the cancer returning basically keeps me a prisoner in my own home. Before, I was extremely outgoing, bubbly and always smiling people told me. Now, I am a shell of my former self.
The guilt is the worst thing I believe. I have such guilt because I feel as if this is all my fault, the constant fear and worry that I am putting my husband through, when I wake up from my surgeries and he is crying at my bedside. How I catch him staring at me sometimes as if he’s afraid to close his eyes and I will be gone. Some days, the guilt immobilizes me and the fear of when my cancer will return is too much.
Most of the time, I really try to be positive and upbeat. I don’t want my husband to know how much I’m hurting inside and I don’t want to cause him more pain. When I do see people that know or find out I have cancer, often I am questioned as to why I still have most of my hair and why I am not skinny from the chemo they think all cancer patients are treated by. I never know exactly how to respond. ‘I’m sorry I don’t look like Gallum from Lord of the Rings??’
Talking to others with thyroid cancer helps a little, but I usually find myself being bitter and resentful because they had one surgery-treatment-and have been good ever since.
Six months that is all I got. Six months and it had already spread. When I go to the cancer hospital in Philly I look across the street at the Children’s Hospital. There are bright colored balloons and hand made signs hanging in the windows. I stop and tell myself that if those poor angels are dealing with cancer at such a young age, then I have no right to be bitter and resentful about anything. I take a deep breath, squeeze my husband’s hand and tell myself that I will keep fighting. Cancer will not take away my spirit, my love for God, and the true love and kindness of my husband that I have been blessed with. Not to mention, I have five kitties at home and they are depending on me as well.
‘Better to die standing than on your knees.’ I like that saying. It gives me strength.”
Organizer
Diana Pearson-Barnett
Organizer
Reading, PA
