On Monday night I had significant swelling from about an inch below my incision all the way up to the base of my skull, and it really hurt. I was sure that it was getting infected.
I woke up at 4:45 on Tuesday morning and couldn't even move my head. It hurt so much that I woke up my mom to tell her that I was calling off from work because the pain was so bad.
I laid awake watching TV until 7am, which is when I gave up on trying to go back to sleep.
Once I was finally able to get in touch with the nurse at my doctors office, she told me to come in anytime.
Thankfully the incision is not infected. The nurse told me that when a surgeon removes a large amount of skin/tissue, the body produces type of fluid. Usually the body just reabsorb that fluid, but apparently my body is producing too much fluid too quickly and my body can't reabsorb it fast enough. My swelling was probably cause by the build up of fluid. The nurse told me to put a warm, damp compress on the spot 5 times during the rest of day. It was supposed to help it drain.
It's now the next day, and while the swelling has gone down, my back and my neck are still extremely sore. (In order to get up from laying on bed, I have to roll over onto my right side, lean on my right elbow and push myself into a sitting position. i cannot roll over so that I am flat on my back or on my left side.)
I really hope this gets better, my back and neck hurt more now then they did after the surgery.
Wednesday, September 30, 2009
Thursday, September 24, 2009
Removal
I had all of my staples and three out of four stitches removed today. The last stitch is going to be removed next Thursday after I get out of work. The removal didn't really hurt at all. If anything there was a slight pinch, but even that was barely worth mentioning.
All looks good. I will have to go back in six months to make sure that none of my other birthmarks are bad, but I am very optimistic that everything is going to be okay.
All looks good. I will have to go back in six months to make sure that none of my other birthmarks are bad, but I am very optimistic that everything is going to be okay.
Tuesday, September 22, 2009
Yay!
My surgeon called today to remind me that i have an appointment on Thursday. While the receptionist was on the phone, my dad asked her if the biopsy results were in. The lymph node is CLEAR!!! There was a little bit more melanoma on my back (which doesn't surprise me since the dermatologist just shave off the lump), but it did not spread to the lymph nodes! I will be okay! I will have to go to a dermatologist every 6 months, but, for now, I'm okay. I feel like I should go out and celebrate.
Saturday, September 19, 2009
Steri Strips
I have three types of closures on my wounds.
The incision on my back is closed with both staples and stitches. The only time they hurt is when I forget myself and put pressure on it when I am laying down.
The steri strips under my armpit (lymph node sight) are another story. They are incredibly itchy. So itchy that I am almost to the point of ripping them off even though I know that that would be the wrong thing to do. I am allergic to adhesive tape. I put that on the allergy list at the hospital. But didn't think anything about steri strips, boy am I mad at myself. After doing research on the internet today, I found that people with adhesive allergies get blisters, and super red itchy skin from steri strips. Not only are the strips adhesive, but usually a spray GLUE is applied to make them stick even more. Apparently I should have just listed adhesive (not adhesive tape). It has been 4 days since they have been put on; with regular band aids, within one to two days, my skin is cherry red. I am almost afraid to see what the skin under the strips looks like.
The incision on my back is closed with both staples and stitches. The only time they hurt is when I forget myself and put pressure on it when I am laying down.
The steri strips under my armpit (lymph node sight) are another story. They are incredibly itchy. So itchy that I am almost to the point of ripping them off even though I know that that would be the wrong thing to do. I am allergic to adhesive tape. I put that on the allergy list at the hospital. But didn't think anything about steri strips, boy am I mad at myself. After doing research on the internet today, I found that people with adhesive allergies get blisters, and super red itchy skin from steri strips. Not only are the strips adhesive, but usually a spray GLUE is applied to make them stick even more. Apparently I should have just listed adhesive (not adhesive tape). It has been 4 days since they have been put on; with regular band aids, within one to two days, my skin is cherry red. I am almost afraid to see what the skin under the strips looks like.
surgery
The day of my surgery I had to be at hospital admissions by 7:30. After waiting for them to call me back, and get my $150 check before they would even admit me, the receptionist told me to go to nuclear medicine up on the second floor. Once i got there, I was told that I wasn't supposed to be there, and to go back down to the first floor, short stay ward.
After taking another elevator ride I got down to shorty stay where the nurse gave me a bed and told me to change into one of the hospital gowns. She sent me to the bathroom to give a urine sample and after returning to my bed made me put on the tight compression socks that went all the way up to my knees. Boy are they tight! Then it was time for the IV. I have very small veins and it was very painful. It probably took at least five minutes for the pain to go away.
Then it was time to wait again. After waiting for approximately two hours I was taken back up to nuclear medicine for Lymphoscintigraphy (description of procedure: http://www.radiologyinfo.org/en/info.cfm?pg=lympho). The radiologist gave me six very painful shots around my spot. When the needle first went in my back, it wasn't too bad, but then I got this extremely painful burning sensation that actually brought tears to my eyes. (The technicians said that I was taking it very well, they had even told me that it was okay to scream, I wounder how many people actually do) After dealing with five more burning shots, although I think I was actually starting to get used to then because at the end they were as painful. i had to lay on my stomach with my neck twisted so that my head was facing to the right, with my hands resting under my head. i had to hold this position for 30 minutes without moving (the longest 30 minutes of my life) After the time was up I was allow to relax for a minute of two and then I had a few more scans done in that position. Finally it was time for a small break. After the break, I had to lay back on my stomach, with my arms above my head and my face down staring at the table; the technician put a towel under my chest, and one under my forehead so that I wouldn't end up suffocating myself. This was for a body scan that went from my head all the way down to my pelvis. After 10-15 minutes of holding this position, I got a 20 minute break. it was nice to be able to move my neck, and arms and get the feeling back into my right hand. once the break was up I had to get back into the first position for a few more images. Finally I was done, It took approximately two hours. i spent the time waiting for my ride, looking at the images over the technicians shoulder. They had a black background with my body in gray. My spot was a large white dot and the lymph node was a tinier white dot under my arm.
Finally I got back to short stay where I waited until 1:30 before I even got to talk to the anesthesiologist. I told him about my past surgeries, which were already in my chart, and told him that if at all possible I would rather have Local anesthesia rather than general. Half an hour later the OR nurse came by and gave me some drugs (and told me that my local Hallmark store was closing) and I was taken to the Operating room.
The next thing I know I was in recovery with an oxygen cannula in my nose. Guess I ended up having general anesthesia after all. The nurse asked me if I had any pain, and when I told him that my arm hurt gave me a shot of pain killers. A few minutes later I started crying, well tearing up, and the nurse kept asking me what was wrong. You got me, I have no idea. It wasn't the pain, I've had worse, must have been from the anesthesia. I spent about an hour in recovery and was finally taken back to my "room" As soon as I woke up in the recovery room, I kept telling myself to keep my eyes open. I wanted to go home! If knew that if I fell asleep they would keep me there longer.
Finally I got to leave the recovery room and got back to short stay. Almost immediately after getting back the nurse wanted to know what I wanted to drink, I got cranberry juice, and a little bit later made me eat a muffin so that I could take a pain pill. Then I got to just sit there with my mom and wait for them the let me go. At one point, my back was bleeding so bad that I wasn't sure the would even let me leave. Thankfully, the nurses just piled on the gauze (there must have been three to four inches of gauze on my back) and the tape and let me leave.
I got in the wheelchair, I wish hospitals would let me walk, and got driven all the way to the backseat of my parents car.
6pm. Home at Last!!! talk about a long day.
By 1pm the next day all of the bandages were off my back. The compression socks that I was supposed to wear were off by 5am. They were so itchy!
I will have to wait awhile for the results on the lymph node biopsy. The surgeon told my parents that the preliminary results might be done by Friday (yesterday), but I still haven't heard anything.
After taking another elevator ride I got down to shorty stay where the nurse gave me a bed and told me to change into one of the hospital gowns. She sent me to the bathroom to give a urine sample and after returning to my bed made me put on the tight compression socks that went all the way up to my knees. Boy are they tight! Then it was time for the IV. I have very small veins and it was very painful. It probably took at least five minutes for the pain to go away.
Then it was time to wait again. After waiting for approximately two hours I was taken back up to nuclear medicine for Lymphoscintigraphy (description of procedure: http://www.radiologyinfo.org/en/info.cfm?pg=lympho). The radiologist gave me six very painful shots around my spot. When the needle first went in my back, it wasn't too bad, but then I got this extremely painful burning sensation that actually brought tears to my eyes. (The technicians said that I was taking it very well, they had even told me that it was okay to scream, I wounder how many people actually do) After dealing with five more burning shots, although I think I was actually starting to get used to then because at the end they were as painful. i had to lay on my stomach with my neck twisted so that my head was facing to the right, with my hands resting under my head. i had to hold this position for 30 minutes without moving (the longest 30 minutes of my life) After the time was up I was allow to relax for a minute of two and then I had a few more scans done in that position. Finally it was time for a small break. After the break, I had to lay back on my stomach, with my arms above my head and my face down staring at the table; the technician put a towel under my chest, and one under my forehead so that I wouldn't end up suffocating myself. This was for a body scan that went from my head all the way down to my pelvis. After 10-15 minutes of holding this position, I got a 20 minute break. it was nice to be able to move my neck, and arms and get the feeling back into my right hand. once the break was up I had to get back into the first position for a few more images. Finally I was done, It took approximately two hours. i spent the time waiting for my ride, looking at the images over the technicians shoulder. They had a black background with my body in gray. My spot was a large white dot and the lymph node was a tinier white dot under my arm.
Finally I got back to short stay where I waited until 1:30 before I even got to talk to the anesthesiologist. I told him about my past surgeries, which were already in my chart, and told him that if at all possible I would rather have Local anesthesia rather than general. Half an hour later the OR nurse came by and gave me some drugs (and told me that my local Hallmark store was closing) and I was taken to the Operating room.
The next thing I know I was in recovery with an oxygen cannula in my nose. Guess I ended up having general anesthesia after all. The nurse asked me if I had any pain, and when I told him that my arm hurt gave me a shot of pain killers. A few minutes later I started crying, well tearing up, and the nurse kept asking me what was wrong. You got me, I have no idea. It wasn't the pain, I've had worse, must have been from the anesthesia. I spent about an hour in recovery and was finally taken back to my "room" As soon as I woke up in the recovery room, I kept telling myself to keep my eyes open. I wanted to go home! If knew that if I fell asleep they would keep me there longer.
Finally I got to leave the recovery room and got back to short stay. Almost immediately after getting back the nurse wanted to know what I wanted to drink, I got cranberry juice, and a little bit later made me eat a muffin so that I could take a pain pill. Then I got to just sit there with my mom and wait for them the let me go. At one point, my back was bleeding so bad that I wasn't sure the would even let me leave. Thankfully, the nurses just piled on the gauze (there must have been three to four inches of gauze on my back) and the tape and let me leave.
I got in the wheelchair, I wish hospitals would let me walk, and got driven all the way to the backseat of my parents car.6pm. Home at Last!!! talk about a long day.
By 1pm the next day all of the bandages were off my back. The compression socks that I was supposed to wear were off by 5am. They were so itchy!
I will have to wait awhile for the results on the lymph node biopsy. The surgeon told my parents that the preliminary results might be done by Friday (yesterday), but I still haven't heard anything.
Monday, September 14, 2009
Mom's advice
My surgery is tomorrow and I don't know what to expect. I know what the doctor told me, but I'm still very uptight.
My mom told me that she read, somewhere, that melanoma patients should not do alot of reading online. She's right. There is so much information, but without knowing exactly where you stand, all that information is going to do is scare you. I've read some of it and all it has done is made me nervous, anxious and a little confused. If you get diagnosed with melanoma follow my mom's advice, don't look it up on the internet.
Here's an example: I was curious how big my scar was going to be, so I googled Wide Local Excision scar and ended up with a picture of a guy with an incision line that stretched from one side of his neck to the other. He also had a drain. My doctor told me he'd be removing two inches around the site so my scar probably won't be as big as that guy's (and I'm praying that I don't have to have a drain) but seeing his scar just made me even more nervous. I keep wondering, how big is this really going to be? Is it going to cover my entire back?! I know that there is nothing I can do about, and I have so many other scars it won't really make a difference, but I'm still nervous.
I guess I will have answers to all my questions tomorrow. Hopefully everything will be fine and I will recover quickly.
My mom told me that she read, somewhere, that melanoma patients should not do alot of reading online. She's right. There is so much information, but without knowing exactly where you stand, all that information is going to do is scare you. I've read some of it and all it has done is made me nervous, anxious and a little confused. If you get diagnosed with melanoma follow my mom's advice, don't look it up on the internet.
Here's an example: I was curious how big my scar was going to be, so I googled Wide Local Excision scar and ended up with a picture of a guy with an incision line that stretched from one side of his neck to the other. He also had a drain. My doctor told me he'd be removing two inches around the site so my scar probably won't be as big as that guy's (and I'm praying that I don't have to have a drain) but seeing his scar just made me even more nervous. I keep wondering, how big is this really going to be? Is it going to cover my entire back?! I know that there is nothing I can do about, and I have so many other scars it won't really make a difference, but I'm still nervous.
I guess I will have answers to all my questions tomorrow. Hopefully everything will be fine and I will recover quickly.
Lying
This whole thing has made me realize what a good liar I am. Everyone keeps asking me how I am, and my standard response is fine. I don't know if I just don't want thwm to pity me or something, but if I told everyone the truth, how scared I am, how worried I am, and about all of the thoughts going through my head they would either want me committed or would look at me like I was sick. I'm not sure who I am trying to protect more, me or them. I think part of it may be that I just want them to treat me differently, I want them to see Jenn, not Jenn who has melanoma.
Sunday, September 13, 2009
Obama's Health Care Plan
On Wednesday, President Obama released his plan for health care reform.
The speech and further information can be found here: http://www.whitehouse.gov/issues/health_care/
The main points are:
1. people with pre-exsiting conditions will be able to get insurance
2. a cap so people won't become bankrupt paying for medical care when they are sick
3. protects Medicare
4. a public option for all of the uninsured who can't get afforable coversge
5. low-cost coverage for people with pre-exsisting conditions so that they can get treatment until the new laws are created
The new plan won't add to the national deficit and will insist that large companies provide healthcare for their employees.
The speech and further information can be found here: http://www.whitehouse.gov/issues/health_care/
The main points are:
1. people with pre-exsiting conditions will be able to get insurance
2. a cap so people won't become bankrupt paying for medical care when they are sick
3. protects Medicare
4. a public option for all of the uninsured who can't get afforable coversge
5. low-cost coverage for people with pre-exsisting conditions so that they can get treatment until the new laws are created
The new plan won't add to the national deficit and will insist that large companies provide healthcare for their employees.
Friday, September 4, 2009
Pre-op tests
I went for my pre-op tests today. They are supposed to be done a week before the surgery, but since I am going out of town next week, I went for them today. I figured a few days isn't going to make much difference with a x-ray, EKG and blood tests.
After waiting for at least 30 minutes I was finally able to check in and pre-register for the hospital. I was then taken to the x-ray waiting room and told to put on one of those blue hospital gowns. It's amazing how hard it can be to put them on, apparently anything with more than two armholes (these have three) is too complicated for my brain to handle. I went to the x-ray room and had to tell the technician that I wasn't pregnant and had to sign more paperwork. The they took the x-ray. No big deal, I've had so many x-rays taken over the years, I could probably take them and develop them myself.
After the x-ray I had to go back to the waiting room and sit there until they called me for the blood test. I have had blood drawn before, but this hurt more than usual. The nurse couldn't get the blood to come out of my vein and had to twist the needle a few times for it to work. Ow!
After the blood test i still had more waiting. Finally after 15 more minutes of staring into space, they called me for the EKG. The technician stuck 6-8 electrodes to my chest and the pulse points on my wrists and ankles, and I just had to lie on the table for two minutes.
Finally I was done with all the tests and I was able to go home. There is one good thing that may come out of all of this. Since I haven't seen my cardiologist in a long time at least the chest x-ray and EKG would show if there is anything that I would need to worry about.
Now hopefully I can forget about everything and just enjoy myself next week.
After waiting for at least 30 minutes I was finally able to check in and pre-register for the hospital. I was then taken to the x-ray waiting room and told to put on one of those blue hospital gowns. It's amazing how hard it can be to put them on, apparently anything with more than two armholes (these have three) is too complicated for my brain to handle. I went to the x-ray room and had to tell the technician that I wasn't pregnant and had to sign more paperwork. The they took the x-ray. No big deal, I've had so many x-rays taken over the years, I could probably take them and develop them myself.
After the x-ray I had to go back to the waiting room and sit there until they called me for the blood test. I have had blood drawn before, but this hurt more than usual. The nurse couldn't get the blood to come out of my vein and had to twist the needle a few times for it to work. Ow!
After the blood test i still had more waiting. Finally after 15 more minutes of staring into space, they called me for the EKG. The technician stuck 6-8 electrodes to my chest and the pulse points on my wrists and ankles, and I just had to lie on the table for two minutes.
Finally I was done with all the tests and I was able to go home. There is one good thing that may come out of all of this. Since I haven't seen my cardiologist in a long time at least the chest x-ray and EKG would show if there is anything that I would need to worry about.
Now hopefully I can forget about everything and just enjoy myself next week.
Thursday, September 3, 2009
surgery
Just got back from seeing the surgeon. On September 15th I'm going to have it removed. That morning I'm going to have radioactive dye injected so that the surgeon will be able to tell if any lymph nodes are involved. I pray that they aren't. My hope is that he will be able to cut everything out and then I'll be find. I hope, I really hope that I won't have to have any further treatment after the surgery.
The surgeon had asked me if I had always had a mole in the spot, and I never did, but I did have a birthmark there that I never paid any attention to. Please, everyone, keep an eye on all of your birthmarks/ moles/ etc. If ANYTHING seems different, get it checked out. Don't wait.
The surgeon had asked me if I had always had a mole in the spot, and I never did, but I did have a birthmark there that I never paid any attention to. Please, everyone, keep an eye on all of your birthmarks/ moles/ etc. If ANYTHING seems different, get it checked out. Don't wait.
Wednesday, September 2, 2009
Tuesday, September 1, 2009
Melanoma
It was a pretty normal day at work today. (I work at McDonald's) The person who does back drive was sent home early, so I got sent back there to take orders and money. That's okay. Sometimes I'd rather be back there. At least its pretty quite.
Then the phone rang. Nothing unusual. The phone is constantly ringing. But it's never for me. One of the managers came back to me and asked if I was expecting a call from my doctor. I thought, that was quick, they already got the results from the biopsy. "The results are in. You have melanoma" It felt like the world stopped moving. The doctor said that his office was going to make arrangements for me to see another doctor and he asked me if I had any questions. Did I have any questions? No. Yes. i don't know. I know what melanoma is. I've seen all the TV shows. I know what can happen to someone when they get diagnosed with cancer.
My appointment is in 2 days. Then I will know how bad my melanoma is.
In the meantime I'm left wondering, how does a girl who uses sunscreen, doe, after writing this, I just realized what probably caused it. I have Tetrology of Fallot, a congenital heart defect, that required me to take several diuretics before I had a valve replacement in 2002. I remember seeing warnings about the sun on those medications. Are they at fault? Has my heart condition caused me to get skin cancer?!
Then the phone rang. Nothing unusual. The phone is constantly ringing. But it's never for me. One of the managers came back to me and asked if I was expecting a call from my doctor. I thought, that was quick, they already got the results from the biopsy. "The results are in. You have melanoma" It felt like the world stopped moving. The doctor said that his office was going to make arrangements for me to see another doctor and he asked me if I had any questions. Did I have any questions? No. Yes. i don't know. I know what melanoma is. I've seen all the TV shows. I know what can happen to someone when they get diagnosed with cancer.
My appointment is in 2 days. Then I will know how bad my melanoma is.
In the meantime I'm left wondering, how does a girl who uses sunscreen, doe, after writing this, I just realized what probably caused it. I have Tetrology of Fallot, a congenital heart defect, that required me to take several diuretics before I had a valve replacement in 2002. I remember seeing warnings about the sun on those medications. Are they at fault? Has my heart condition caused me to get skin cancer?!
Universal Healthcare
Here is a letter that I wrote to the local newspapers, and also sent to my senators and President Obama:
I was born with a congenital heart defect (Tetrology of Fallot) that resulted in several surgeries before I was even a year old. When I was two years old I had to have another open heart surgery. After that things were okay, but I had to see a pediatric cardiologist once or twice a year. In 2002, at the age of 17, I had to have another open-heart surgery to replace one of the valves in my heart. I also another valve that will probably need to be replaced, but I do not even know where I stand with that one, since I haven’t seen my cardiologist since December 2007.
I have been unable to go to one since because there are no pediatric cardiologists, who are the only doctors who know how to treat my defect, because there are none who accept my limited insurance.
After my previous insurance ran out in December 2007, I tried to get under another plan but was told that I was uninsurable. I was finally able to get on a limited plan, through my work, but there are no pediatric cardiologists in that plan. If I was to go to my current doctor, I would have pay for the vist and all of the tests (and since it has been so long, there would be several) upfront; there is no way that I can afford to do that.
I do not understand how so many people can be against a public healthcare option. Those who are happy with their current health care plan do not have to do anything. They will get to keep their health care, and if they would happen to lose it, they would not have to worry because they would have a fall-back option.
The uninsured, under-insured, and uninsurable need to have a health care system. They need to be able to go to the same doctors and get the same health care as everyone else.
I am afraid to think about what might happen to me if I do not get access to the proper doctors. Heart valves usually last between ten and fifteen years. It will be seven years, in December, since I have received my valve. We all need affordable health care. If you have health care, think about what would happen if your children, grandchildren, siblings, etc. were to develop a serious disease and not have access to the medical care they needed. Wouldn’t you want them to be able to go to the best doctors?
I was born with a congenital heart defect (Tetrology of Fallot) that resulted in several surgeries before I was even a year old. When I was two years old I had to have another open heart surgery. After that things were okay, but I had to see a pediatric cardiologist once or twice a year. In 2002, at the age of 17, I had to have another open-heart surgery to replace one of the valves in my heart. I also another valve that will probably need to be replaced, but I do not even know where I stand with that one, since I haven’t seen my cardiologist since December 2007.
I have been unable to go to one since because there are no pediatric cardiologists, who are the only doctors who know how to treat my defect, because there are none who accept my limited insurance.
After my previous insurance ran out in December 2007, I tried to get under another plan but was told that I was uninsurable. I was finally able to get on a limited plan, through my work, but there are no pediatric cardiologists in that plan. If I was to go to my current doctor, I would have pay for the vist and all of the tests (and since it has been so long, there would be several) upfront; there is no way that I can afford to do that.
I do not understand how so many people can be against a public healthcare option. Those who are happy with their current health care plan do not have to do anything. They will get to keep their health care, and if they would happen to lose it, they would not have to worry because they would have a fall-back option.
The uninsured, under-insured, and uninsurable need to have a health care system. They need to be able to go to the same doctors and get the same health care as everyone else.
I am afraid to think about what might happen to me if I do not get access to the proper doctors. Heart valves usually last between ten and fifteen years. It will be seven years, in December, since I have received my valve. We all need affordable health care. If you have health care, think about what would happen if your children, grandchildren, siblings, etc. were to develop a serious disease and not have access to the medical care they needed. Wouldn’t you want them to be able to go to the best doctors?
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