Back in August of 2011 I decided to take my company's offer to pay tuition for me to go back to school. Actually, I was pretty excited about sitting in a classroom again and seeing if I was up to the challenge.
At first I was in a total fog. Everyone had laptops and were looking at the powerpoints and I didn't even know that the powerpoints were important. I also didn't know that the course outline and many of the other things I needed were online and as a result I barely passed my first exam. Then I really got down to business and put myself into it. I did better on the second exam and perfect scores on the assignments. I was headed for a perfect lab notebook when I got my MRI back. I brought my MRI results in to the professor and asked him to help me understand what was going on. We went over it for about an hour; he was so kind.
He said not to worry about the class, it was more important to get well. I finally ended up with a WF (which means withdrawn failing) in the class but there was nothing I could do at all. I've never failed a class in all my academic career but cancer does funny things to your life. I think my plans to become a nurse will not come to fruition. I don't think I'll be well enough to study or work and I don't think anyone would hire me even if I did complete it.
With that WF I knew my life was really in the blender.
Saturday, July 7, 2012
Detour to the ICU
The magnitude of this illness is beginning to sink in as I lay in the hospital for about a week after the surgery. It seems that during the surgery I stopped breathing or something and they had trouble getting me going again so I ended up on a respirator in the ICU. Every time my blood oxygen level dropped below 80 the machine would beep, the nurse would come into my room and tell me to take a deep breath. Pretty soon I was able to do it without being reminded. After they took out the catheter (oh yes, all the indignities you can imagine) I had to get out of the bed which was designed with very high sides on the mattress and very high up off the ground. About the third day in ICU the physical therapists came and, one on each arm, dragged me out of bed. I really thought I was going to die but I didn't and I DID have to pee.
Meanwhile, I'm pressing the pain button every few minutes... finally they shipped me up to my room with a horrible sore throat, dry lips and puffy as hell. After another three days up on the 5th floor I was able to go home.
Meanwhile, I'm pressing the pain button every few minutes... finally they shipped me up to my room with a horrible sore throat, dry lips and puffy as hell. After another three days up on the 5th floor I was able to go home.
Green beams of healing energy
Here's what I wrote to my friends that day:
Dear Friends,
well, life happens so fast, doesn't it? When I came back from Miranda's at Thanksgiving my knee really hurt so I went to the doctor who said it was a dislocated kneecap. I went for therapy in December and January but that didn't help. So then I got the shot in the knee but that didn't help either. The problem is that I cannot walk. I was working up until the other day but it hurt and I was limping bad, taking a few days off now and then to rest but it wasn't getting better and everyone at work was saying "what's wrong with you?" Finally he sent me for an MRI. We were both pretty surprised by that MRI outcome so my wonderful doctor sent me off to the oncologist.
The oncologist had me take a PET scan and a bone scan, said it was beyond him so off I went to Moffitt Cancer Center in Tampa. It seems I have some form of rare bone cancer; they are not sure where it started, but it's definitely attached to and eating through my lower femur (that's the thigh bone). Not a pretty picture and not something you would wish on your worst enemy, much less your friend. I can't walk because it's eaten through enough of my bone to cause the bone to break! Ugh! I have to sit around and study my microbiology and that's not easy when you're in pain! This is where pain pills come in and I'm taking a lot of them because, let me tell you, this hurts a lot!
Next Tuesday I go for my pre-op screening where they will decide if I'm healthy enough for surgery and then Wednesday I go for my biopsy. They will cut into my knee and take a little sample of the tumor. The pathologist will be right there to decide which kind of tumor it is. If it's beingn (we hope) then they will scrape off all they can, patch me up with some kind of bone cement and metal plates and after a few days of recovery, off I go. If it's not benign then it's malignant and they will staple me up and I will start chemotherapy and radiation. I don't want to think about that right now so I'm asking that everyone start sending me great big green beams of healing energy! Keep it up!
I'll let you know how things are going next week some time.
love,
Julie
That's pretty much what happened! Well, of course it was not benign and it was malignant but it was not a sarcoma. Since Dr. Letson is only the wizard of Sarcoma he shipped me off to the Hematological Oncology department. There I met Dr. Baz.
Dear Friends,
well, life happens so fast, doesn't it? When I came back from Miranda's at Thanksgiving my knee really hurt so I went to the doctor who said it was a dislocated kneecap. I went for therapy in December and January but that didn't help. So then I got the shot in the knee but that didn't help either. The problem is that I cannot walk. I was working up until the other day but it hurt and I was limping bad, taking a few days off now and then to rest but it wasn't getting better and everyone at work was saying "what's wrong with you?" Finally he sent me for an MRI. We were both pretty surprised by that MRI outcome so my wonderful doctor sent me off to the oncologist.
The oncologist had me take a PET scan and a bone scan, said it was beyond him so off I went to Moffitt Cancer Center in Tampa. It seems I have some form of rare bone cancer; they are not sure where it started, but it's definitely attached to and eating through my lower femur (that's the thigh bone). Not a pretty picture and not something you would wish on your worst enemy, much less your friend. I can't walk because it's eaten through enough of my bone to cause the bone to break! Ugh! I have to sit around and study my microbiology and that's not easy when you're in pain! This is where pain pills come in and I'm taking a lot of them because, let me tell you, this hurts a lot!
Next Tuesday I go for my pre-op screening where they will decide if I'm healthy enough for surgery and then Wednesday I go for my biopsy. They will cut into my knee and take a little sample of the tumor. The pathologist will be right there to decide which kind of tumor it is. If it's beingn (we hope) then they will scrape off all they can, patch me up with some kind of bone cement and metal plates and after a few days of recovery, off I go. If it's not benign then it's malignant and they will staple me up and I will start chemotherapy and radiation. I don't want to think about that right now so I'm asking that everyone start sending me great big green beams of healing energy! Keep it up!
I'll let you know how things are going next week some time.
love,
Julie
That's pretty much what happened! Well, of course it was not benign and it was malignant but it was not a sarcoma. Since Dr. Letson is only the wizard of Sarcoma he shipped me off to the Hematological Oncology department. There I met Dr. Baz.
Dr. Letson visit 4-10-2012
With all the paperwork in hand I went up to see Dr. Letson along with my mom and Mary Gale. It seemed like hours later but finally Dr. L came into the room along with two of his interns (one of whom was Dr. Alexander). He said they had reviewed all of the films and xrays and, yes, it was a tumor. They did not know what kind of tumor so they would have to do some surgery to take a biopsy. If it turned out to be a sarcoma they would put a rod in my leg to stabilize it and close me back up. If it was anything else, they would try to scrape off the tumor and patch me up. Letson asked if I wanted "cadaver bone" or "cement" and of course I said cement. Can you imagine having a dead person's bone attached to your bone?? Letson said the cadaver bone worked really well. Yuckkk.
We all went home thinking it was a piece of cake (or at least I did) and that they would scrape off whatever was growing and after a week or so I would be better and back to work. LOL. Boy was I wrong about that. I didn't know what was ahead for me, that's for sure!
We all went home thinking it was a piece of cake (or at least I did) and that they would scrape off whatever was growing and after a week or so I would be better and back to work. LOL. Boy was I wrong about that. I didn't know what was ahead for me, that's for sure!
Sunday, July 1, 2012
Moffitt Cancer Center - Sarcoma clinic
On 4/2/12, Dr. Sholi set me up for a PET scan and a bone scan and he called Moffitt for me and made the appointment. They called that afternoon to schedule my trip up there to see the great and powerful wizard of sarcoma Dr. G Douglas Letson.
I went and had the PET/Bone scan on 4/4/12. They injected some radioactive dye into my vein and I had to sit there for an hour while it boiled all through me. My vision became blurry, I was having some leg cramps and I was quite out of it but in the end it was all done. They gave me a disk to take with me so the experts could review the results.
I was a walking zombie, just going through all the motions of everyday life.
I went and had the PET/Bone scan on 4/4/12. They injected some radioactive dye into my vein and I had to sit there for an hour while it boiled all through me. My vision became blurry, I was having some leg cramps and I was quite out of it but in the end it was all done. They gave me a disk to take with me so the experts could review the results.
I was a walking zombie, just going through all the motions of everyday life.
First trip to the oncologist
Well Dr Sholi took one look at the MRI and said "You're going to Moffitt tomorrow" and that was it. He gave me a note to take to work outlining my condition and said "NO WORK" and ordered me to stay off my feet. This was not really a problem because by this time I couldn't walk anyway the pain was so bad. I got a pair of crutches from the Salvation Army store to hobble around.
I called my friend out on Longboat and asked if he could come and get Foxy (cutest Corgi in the world) because I couldn't walk her anymore. Foxy would end up out on Longboat Key for over a month but if he wouldn't have helped me I would have had to send Foxy to the rescue group and I really didn't want to do that.
I worked out the details of what exactly "no work" means with my job. When I was hired I signed up for the short term disability pay ... figuring that as a CNA I could get hurt and would need some money. (Boy was I right). I had to use up all of my vacation and personal days and then go on FMLA (family medical leave act) and then the payments would kick in. Now I lived pretty close to the edge financially anyway, but the thought of having a reduced paycheck sent me into a panic.
I called my friend out on Longboat and asked if he could come and get Foxy (cutest Corgi in the world) because I couldn't walk her anymore. Foxy would end up out on Longboat Key for over a month but if he wouldn't have helped me I would have had to send Foxy to the rescue group and I really didn't want to do that.
I worked out the details of what exactly "no work" means with my job. When I was hired I signed up for the short term disability pay ... figuring that as a CNA I could get hurt and would need some money. (Boy was I right). I had to use up all of my vacation and personal days and then go on FMLA (family medical leave act) and then the payments would kick in. Now I lived pretty close to the edge financially anyway, but the thought of having a reduced paycheck sent me into a panic.
Second trip to the doctor
So clearly the physical therapy wasn't working and I told Keith that. He suggested that he give me a cortisol injection right to the knee joint. "Bring it on" I said and he did it right then and there -- that was some time in March.
After a few days my knee was still hurting bad and I was starting to limp noticably. I was starting to have to take days off work because of my knee pain. I called Keith again and said it wasn't working that I was still in pain and so he sent me off to Sarasota Memorial for an MRI of my knee. We both agree that it must be a torn ligament or something. I waited for the results.
He called me the next day. I was at work but I was expecting his call so when the call actually came I was expecting it. Keith said he was sorry to tell me over the phone but he was shocked and wanted me to know right away. According to the MRI I had a huge tumor on my tibia, right above my knee. He wanted me to see an oncologist right away.
After a few days my knee was still hurting bad and I was starting to limp noticably. I was starting to have to take days off work because of my knee pain. I called Keith again and said it wasn't working that I was still in pain and so he sent me off to Sarasota Memorial for an MRI of my knee. We both agree that it must be a torn ligament or something. I waited for the results.
He called me the next day. I was at work but I was expecting his call so when the call actually came I was expecting it. Keith said he was sorry to tell me over the phone but he was shocked and wanted me to know right away. According to the MRI I had a huge tumor on my tibia, right above my knee. He wanted me to see an oncologist right away.
First trip to the doctor & physical therapy
The doctor looked at my knee and thought maybe I had a dislocated kneecap. (this is the same one that prescribed the antidepressants). They took an Xray of my knee which did not show any broken parts but that showed some thinning of the bone and some minor arthritis. He set me up with a physical therapist (I'm still paying that bill) and I went for the whole month of December. The only thing that I found helpful was the ice pack for 20 minutes. Since my insurance deductible ran out at the end of December 2011 (did I mention that I took a trip to the hospital?... I'll go back and discuss that later), I decided to try doing the exercises at home, which I did religiously! They didn't do a darn bit of good.
Back to the doctor I went.
Back to the doctor I went.
It got serious
I was always avoiding stairs, going for walks, anything that would get my knee going. I remember that when my daughter graduated college I could barely walk around the campus. It was terrible and I felt so guilty. My knee was really putting a cramp in my life.
I ended up moving to Sarasota in 2009 and my daughter moved to Connecticut. I was pretty active swimming in the pool, kayaking, working and things were pretty good for a while. Over a period of a few weeks I started getting really tired. I mean really really tired. I thought I was depressed since I could not get up off the couch and was sleeping so much. Even though I was working, my knee hurt and I was so exhausted all the time. On my doctor's advice, I started taking antidepressants. They didn't really help but I took them anyway, switching from Prozak to Lexapro back to Prozak since it was a lot cheaper. I'm still taking those but I'm starting to wonder if I should.
When I went up to visit Miranda at Thanksgiving 2011 my knee was pretty bad ... she lived on the first floor and I was walking up the stairs a few times a day. I hobbled around her pretty little town and she drove me around seeing the sights. I was like an old lady!!!!! By the time I got back my knee had just exploded with pain. Miranda made me promise to go to the doctor so I went.
I ended up moving to Sarasota in 2009 and my daughter moved to Connecticut. I was pretty active swimming in the pool, kayaking, working and things were pretty good for a while. Over a period of a few weeks I started getting really tired. I mean really really tired. I thought I was depressed since I could not get up off the couch and was sleeping so much. Even though I was working, my knee hurt and I was so exhausted all the time. On my doctor's advice, I started taking antidepressants. They didn't really help but I took them anyway, switching from Prozak to Lexapro back to Prozak since it was a lot cheaper. I'm still taking those but I'm starting to wonder if I should.
When I went up to visit Miranda at Thanksgiving 2011 my knee was pretty bad ... she lived on the first floor and I was walking up the stairs a few times a day. I hobbled around her pretty little town and she drove me around seeing the sights. I was like an old lady!!!!! By the time I got back my knee had just exploded with pain. Miranda made me promise to go to the doctor so I went.
How did this darn thing get started?
As far back as 2006 I've had a painful knee. I remember slipping on the snow when I lived in Crystal Lake and that it hurt since then. Of course I thought I had chipped a bone or stressed a ligament and that it would heal with time.
Occasionally I would go to the doctor who would tell me to lose a little weight and it will be ok. So I lost a little weight and it wasn't ok. The pain didn't get worse but it also didn't get better so I just ignored it. We moved to Island Lake and I didn't have to worry about slipping on the snow anymore. I enrolled in a fantastic yoga class and remember that I always had "knee issues" but the instructor was so helpful in helping me redesign the exercises to fit my issues. I lost a lot of weight at that time. My pain didn't get worse, but it also didn't get better.
Occasionally I would go to the doctor who would tell me to lose a little weight and it will be ok. So I lost a little weight and it wasn't ok. The pain didn't get worse but it also didn't get better so I just ignored it. We moved to Island Lake and I didn't have to worry about slipping on the snow anymore. I enrolled in a fantastic yoga class and remember that I always had "knee issues" but the instructor was so helpful in helping me redesign the exercises to fit my issues. I lost a lot of weight at that time. My pain didn't get worse, but it also didn't get better.
Subscribe to:
Comments (Atom)