sooo....Monday they did blood tests, Tuesday they did blood tests, and at today's appointment (which was supposed to be yesterday), guess what doc is putting an order in for? You guessed it! More blood tests!
If not tomorrow than by Friday for sure I need to stop by and get another blood draw.
Because of the inflammation I've been having he's been running a few more tests. My inflammation levels are higher than they should be, and my ANA test was still positive - as it was 14 years ago when I was first diagnosed with Anklyosing Spondalitis. However... according to my doctor the issues I've had (including slightly premature burning and the inflammation) isn't what they expect from a patient with just Anklyosing Spondalitis, which generally doesn't cause issues with radiation. Therefore he believes there may be some other autoimmune issue going on as well.
Before the whole cancer thing showed up, we knew, and forgot that I am a carrier for Lupus. Since both cancer and radiation can change a persons biological makeup, they are now checking to make sure I haven't switched over from being a carrier to actually having Lupus.
As far as the burning goes, in some areas my skin is turning, well almost black. In some of those places it is now peeling away. While this is normal for radiation treatment, mine is doing it a bit earlier than normally expected. So yeah, that kind of sucks too.
On the positive side, works is going well, and in just over 3 days I will be arriving in Miami. We have a fun several days planned and can't wait to get to see Taylor again!
Wednesday, May 20, 2015
Wednesday, May 13, 2015
Costochondritis is a very long word
Today was Day 16 of radiation. I should be farther ahead but one day the machine was down, and yesterday I spent half the day in the emergency room so I didn't have my appointment yesterday either.
Yesterday, when I woke up, my chest was hurting me. As I rolled over, it hurt even worse. I tried a bath to see if that would help - nope. Laid back down in bed and it hurt even worse. I was texting with Taylor and told him what was going on. His roommate's father is a radiation oncologist and he asked him to give me a call. I put a call into my own doctor but heard from Dr. Muff first. He assured me that whatever it was, it most likely was not because of the radiation and that my doctor would probably tell me to either go see my primary doctor or go to the er. He suggested just going to the er as there were tests they would need to run that wouldn't be available to me at my doctor's office. A few minutes later, my doctor's office called and said precisely what Dr. Muff said they would. My primary doctor wouldn't even be in for a couple of hours, so Tyler and I headed to the hospital.
The ride there was bumpy, and each time the car bounced it sent more pain shooting through my chest. We walked into a packed waiting room, but triage went quickly and included an EKG, a blood test and insertion of an IV - just in case it was needed. They said my EKG was perfect, and therefore ruled out a heart attack.
We hung out in the waiting room for quite a while before they called me in.
Once in a room they hooked me up to all those wonderful contraptions and AFTER asking what side my breast cancer was on (left) they put the blood pressure cuff on my left arm....which they aren't supposed to, but did anyway because they had the IV in my right arm.
They had originally ordered a chest x-ray, but once the doctor checked me out, she said she wanted a cat scan with contrast instead. Her concern was a pulmonary embolism - aka a blood clot.
They took me for the test and about an hour later they told me that too was clear. When the doctor came back, she told me I had inflammation of the chest wall, a side effect of the radiation therapy. They had given me a medication for the inflammation and it had helped immensely. So, since everything else was clear, they wrote me a prescription for 600 mg of ibuprofen and sent me home.
This morning I went to work, then afterwards to radiation and then into see my radiation oncologist. He had a little information about what was going on, so after I went over everything with him he told me that no, this had nothing to do with the radiation as that area is not even being radiated. He did say it could possibly be a strain. If it doesn't get better in a week, then we know its not a strain, but costochondritis instead. So for now we wait and see what happens. He is concerned with the "why" did this happen now. It could be a side effect from the infection I had. It could be something else. Since I have Anklyosing Spondalitis, Rheumatoid Arthritis and I am a carrier of Lupus, if the pain doesn't go away in a week then he is going to order a bunch more testing to check for auto immune diseases since cancer has a way of changing a person's physiology.
He was upset that the er doc blamed the radiation and he was not at all happy that not only did they put the blood pressure cuff on my left arm, they took blood out of it as well, and guess what? Once again, bruises all over my arm where the blood pressure cuff was. I had told them it was too tight, it was hurting too much, I loudly yelled "f***" at one point. I even took it off but they put it right back on, as if I hadn't said a word. I guess from now on I just plain get combative when they come at me with a blood pressure cuff. I don't know why this is suddenly an issue either. I've never had that problem before and now it's happened twice in less than a week. Doc says we need to look into that as well.
I still have a lot of radiation to go, at least 19 more times - I'm almost to the halfway point. The burning and itching is aggravating, but nothing compared to the other "stuff" that seems to keep popping up. Highly looking forward to the day when all of this is behind me.
Yesterday, when I woke up, my chest was hurting me. As I rolled over, it hurt even worse. I tried a bath to see if that would help - nope. Laid back down in bed and it hurt even worse. I was texting with Taylor and told him what was going on. His roommate's father is a radiation oncologist and he asked him to give me a call. I put a call into my own doctor but heard from Dr. Muff first. He assured me that whatever it was, it most likely was not because of the radiation and that my doctor would probably tell me to either go see my primary doctor or go to the er. He suggested just going to the er as there were tests they would need to run that wouldn't be available to me at my doctor's office. A few minutes later, my doctor's office called and said precisely what Dr. Muff said they would. My primary doctor wouldn't even be in for a couple of hours, so Tyler and I headed to the hospital.
The ride there was bumpy, and each time the car bounced it sent more pain shooting through my chest. We walked into a packed waiting room, but triage went quickly and included an EKG, a blood test and insertion of an IV - just in case it was needed. They said my EKG was perfect, and therefore ruled out a heart attack.
We hung out in the waiting room for quite a while before they called me in.
Once in a room they hooked me up to all those wonderful contraptions and AFTER asking what side my breast cancer was on (left) they put the blood pressure cuff on my left arm....which they aren't supposed to, but did anyway because they had the IV in my right arm.
They had originally ordered a chest x-ray, but once the doctor checked me out, she said she wanted a cat scan with contrast instead. Her concern was a pulmonary embolism - aka a blood clot.
They took me for the test and about an hour later they told me that too was clear. When the doctor came back, she told me I had inflammation of the chest wall, a side effect of the radiation therapy. They had given me a medication for the inflammation and it had helped immensely. So, since everything else was clear, they wrote me a prescription for 600 mg of ibuprofen and sent me home.
This morning I went to work, then afterwards to radiation and then into see my radiation oncologist. He had a little information about what was going on, so after I went over everything with him he told me that no, this had nothing to do with the radiation as that area is not even being radiated. He did say it could possibly be a strain. If it doesn't get better in a week, then we know its not a strain, but costochondritis instead. So for now we wait and see what happens. He is concerned with the "why" did this happen now. It could be a side effect from the infection I had. It could be something else. Since I have Anklyosing Spondalitis, Rheumatoid Arthritis and I am a carrier of Lupus, if the pain doesn't go away in a week then he is going to order a bunch more testing to check for auto immune diseases since cancer has a way of changing a person's physiology.
He was upset that the er doc blamed the radiation and he was not at all happy that not only did they put the blood pressure cuff on my left arm, they took blood out of it as well, and guess what? Once again, bruises all over my arm where the blood pressure cuff was. I had told them it was too tight, it was hurting too much, I loudly yelled "f***" at one point. I even took it off but they put it right back on, as if I hadn't said a word. I guess from now on I just plain get combative when they come at me with a blood pressure cuff. I don't know why this is suddenly an issue either. I've never had that problem before and now it's happened twice in less than a week. Doc says we need to look into that as well.
I still have a lot of radiation to go, at least 19 more times - I'm almost to the halfway point. The burning and itching is aggravating, but nothing compared to the other "stuff" that seems to keep popping up. Highly looking forward to the day when all of this is behind me.
Thursday, May 7, 2015
It's been a while
So it's been a while since I updated.
I'm back in radiation. Today was day 13 including the 3 days before the explosion.
There is a schedule to how things work. Once a week (on either Monday or Tuesday) I meet with the doc, nurse, counselor, dietician and anyone else who wants to see me. Every other doctor day I get my blood drawn. On Thursdays I get x-rays before the treatment.The treatment isn't hard, but it's not fun. Laying half naked on a table and not moving isn't the bad part. The bad part is afterwards. My skin is starting to burn now. It itches, twitches and my breast is doing things that just aren't normal. Though they tell you no bra, I'm still wearing one to work, but the rest of the time pretty braless and lopsided. It's already affecting my back and my sciatica is back.
Today I also had to go back and see the medical oncologist again (even though it totally wasn't necessary since he didn't need to see me til the radiation is done, but since it's not)....well I had called and told them but they told me to come in anyway. Doc seemed surprised when I said nope not done with radiation. Had to explain to him that his office told me to come in anyway. Then he ordered a blood test, another waste since I had the same thing done 2 days ago.
On my first blood test 2 weeks ago my protein level was fine, but Vitamin D was way way low. I'm supposed to be at 40, I'm at 17. Need to do a serious intake of vitamin D to get my levels up.
Two weekends ago I went to the Women's Weekend in Lake Geneva with my daughter Krystle and friend Wendy, it was like a 65 hour girls night out. I recovered just in time for my best friend, Taylor, to come in for the weekend from Miami. We saw The Avengers at the Drive in Friday night and Saturday he helped with some more painting outside and then Mike deep fried a turkey and friends stopped by for a bonfire. I was glad Taylor got a chance to meet some of my other friends, and could spend some time with the family. Sunday I had to take him back to the airport and I cried the whole way home.
This Saturday is Sleep out for Shelter. We have been doing this for several years now, and I'm not going to let cancer stop me from raising funds to help out those who are less fortunate than we are. Our team still has over $300 to raise in just 2 DAYS! If you can help out please do! Even if you can only donate $5, PADS is getting a grant that will donate $2 for every $1 raised, your $5 donation turns into $15. To donate follow this lin: https://www.sleepoutforshelter.org/team/thegatheringgrove/
I also went back to work Monday, finally! It's good to be back and I'm in a new position that is requiring me to learn a whole bunch of new stuff. But its really good to be back and making a little bit of money again! Cancer is really expensive and FAR more expensive than the $35,000 to $100,000 estimates I found online. I surpassed the high end of that before I restarted my radiation treatments!
The end of this month we are headed to Miami to see Taylor, down to the Keys for some fishing and then to Naples to see Mike's friend Kelly.
Lots to look forward to!
I'm back in radiation. Today was day 13 including the 3 days before the explosion.
There is a schedule to how things work. Once a week (on either Monday or Tuesday) I meet with the doc, nurse, counselor, dietician and anyone else who wants to see me. Every other doctor day I get my blood drawn. On Thursdays I get x-rays before the treatment.The treatment isn't hard, but it's not fun. Laying half naked on a table and not moving isn't the bad part. The bad part is afterwards. My skin is starting to burn now. It itches, twitches and my breast is doing things that just aren't normal. Though they tell you no bra, I'm still wearing one to work, but the rest of the time pretty braless and lopsided. It's already affecting my back and my sciatica is back.
Today I also had to go back and see the medical oncologist again (even though it totally wasn't necessary since he didn't need to see me til the radiation is done, but since it's not)....well I had called and told them but they told me to come in anyway. Doc seemed surprised when I said nope not done with radiation. Had to explain to him that his office told me to come in anyway. Then he ordered a blood test, another waste since I had the same thing done 2 days ago.
On my first blood test 2 weeks ago my protein level was fine, but Vitamin D was way way low. I'm supposed to be at 40, I'm at 17. Need to do a serious intake of vitamin D to get my levels up.
Two weekends ago I went to the Women's Weekend in Lake Geneva with my daughter Krystle and friend Wendy, it was like a 65 hour girls night out. I recovered just in time for my best friend, Taylor, to come in for the weekend from Miami. We saw The Avengers at the Drive in Friday night and Saturday he helped with some more painting outside and then Mike deep fried a turkey and friends stopped by for a bonfire. I was glad Taylor got a chance to meet some of my other friends, and could spend some time with the family. Sunday I had to take him back to the airport and I cried the whole way home.
This Saturday is Sleep out for Shelter. We have been doing this for several years now, and I'm not going to let cancer stop me from raising funds to help out those who are less fortunate than we are. Our team still has over $300 to raise in just 2 DAYS! If you can help out please do! Even if you can only donate $5, PADS is getting a grant that will donate $2 for every $1 raised, your $5 donation turns into $15. To donate follow this lin: https://www.sleepoutforshelter.org/team/thegatheringgrove/
I also went back to work Monday, finally! It's good to be back and I'm in a new position that is requiring me to learn a whole bunch of new stuff. But its really good to be back and making a little bit of money again! Cancer is really expensive and FAR more expensive than the $35,000 to $100,000 estimates I found online. I surpassed the high end of that before I restarted my radiation treatments!
The end of this month we are headed to Miami to see Taylor, down to the Keys for some fishing and then to Naples to see Mike's friend Kelly.
Lots to look forward to!
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