After 1 1/2 hours of waiting in the waiting room I got the news I was secretly hoping for...I know that is bad! My counts did not improve from last week and it was not safe to do resume treatments yet. It took a while but I feel SO much better and I didn't want stinky chemo to ruin it for me!
The bad news is...because my body is not recovering on it's own, I need medical intervention...those dreaded shots I was talking about! So the nurse was willing to "teach" me to do it yesterday but my brain just needed a little time..well a lot of time! So she gave me my first one on Tuesday. That leaves one for Wednesday and one for Thursday.
If this works getting my counts back to an acceptable level, then this will be my routine. Chemo on Tuesday, shots of Neupogen on Wednesday, Thursday and Friday. Rest up on the week end and blood work Monday (to check my counts) and back to chemo on Tuesday...
The Neupogen is not without its own set of side effects. When described to me, I am not going to lie, it scared me! The nurse explained that the Neupogen encourages cell development (whatever my body is lacking, red blood cells, white blood cells, platelets..all of which of mine are low) in the bone marrow. As a result the large, flat bones where an adult's bone marrow is produced will become "swollen" with (hopefully) a multitude of cells. These include the pelvis and sternum (chest) and the bones will hurt. "You may feel like you are having a heart attack but it is just the Neupogen" That was not nice to hear. She immediately gave me Tylenol and said to continue taking it every 4 hours...don't let the hurt start. I am a faithful complier so I did exactly as I was told!
The other side effects are flu-like symptoms which alone are okay but the fever really confused me. If I am supposed to go to the ER if my fever elevates beyond 100.4 and this Neupogen may cause fever....how am I supposed to know if it is a product of the medication or a real infection. See my grief!? And since they say that a minor infection can be life threatening due to my counts, what am I supposed to do if a fever should occur??? I am not a dumb human being but I just couldn't get what they were telling me! I still don't fully understand it all. I understand why the fever occurs with the Neupogen, she did a great job explaining that. It all has to do with the amount of white blood cells, which causes fever (correct verbage?? you get the gest) as your body's reaction to that count, blah, blah, blah. The white blood cell count will be elevated because that is the goal of the Neupogen. The body's natural reaction to an elevated count is fever...makes sense.
So back to my point...how would you know if the fever is a product of the Neupogen or a life threatening infection? And let's be honest that is the only question I REALLY want the answer to!! It seems there isn't really a clear answer so our plan of action is to call the doctor. We will let all of his wisdom have a turn in this conundrum!
Now that I haven't had chemo in 2 weeks, I feel great! My muscle and bones ache from the shot and I am really tired but no nausea. That can be a side effect from the shot but so far so good. I am able to be with the kids, although we have stayed home because of the risk of infection but I feel good. Which is a gift! My friends have been amazing. Carey has brought dinner every Monday night and while this has been difficult for me to accept that I cannot take care of my family, my amazing friends have helped me with that. Thank you for that incredible gift! You are pulling me through this and I am so very grateful!!!
You all amaze me with your generousity!!
Wednesday, December 30, 2009
Tuesday, December 22, 2009
No Go!
My blood work is in and my counts are too low. No chemo this week. I am feeling terrible.
Merry Christmas
Merry Christmas
Saturday, December 19, 2009
Ugh!
Round 2 wasn't any easier...it was more difficult!
My appointment started with an appointment with the doctor. He took a bunch of notes and looked at me...I knew what was coming, I had looked at my lab paper on his desk while he was writing and I could see my lab values were not in the normal columns. Sure enough, my white blood cell counts are down. My hemoglobin, and platelets are down as well. As far as the white blood cell counts go, it could be dangerous and if they fall any lower I will have to do shots at home to increase their production. Wow! Sounds like an adventure! He explained that they were simple shots that Scott could do...ha ha! Any of you who know Scott, know that shots aren't something he can even look at, let alone give! He was gripping his chair and grimacing just at the thought that I would need these suckers...he can't be the one to give them to me....it will never happen.
So my doctor suggested a friend, possibly a friend who is a nurse...Maricris are you reading this??? Karen???? So I am starting a sign up list (just kidding) for shot givers! Initially I thought I would be able to give it to myself but after thinking about it, I may need some time to get acquainted with the idea. Unfortunately, I may not have "time." I do my blood work Monday, get the results Tuesday...
As for the platelets and hemoglobin, they require blood transfusions. Hmmm! This is just exciting all around the corner, isn't it?!?!? I'm O+ if anyone has a burning desire to bank blood for me. Right now a blood transfusion seems like the least of my worries. Am I wrong to have that attitude???
The WBC (white blood cell) count is the dangerous one. I can get a "life threatening" infection so I need to be careful. I am trying to stay out of crowded public places and snot nosed little kids (and that includes my own!) Makes it difficult when folks send their sick kids to school and my kids bring the nasty germs home. My kids have had a crash course of germ "etiquette." It will keep me out of the hospital and they understand those terms.
This round was bad. On Tuesday, treatment day, I felt okay. I wasn't really sick like last time. I came home, rested and waited for the assault to occur. Wednesday, Thursday, Friday, were bad. It is like having the worst flu in your life. No vomiting but just the most uncomfortable, sometimes painful, nausea. Mouth sores have not happened. I think I have figured out how to drown them out so them don't have a chance to develop. I drink tons of water the day of my treatment.
By Friday, I was feeling okay enough to go out. At 3 am I woke up in so much pain and discomfort, I stayed up the rest of the day. Scott tried to give me tea and sat with me while I tried to throw up but nothing really helped. We are still tinkering with remedies and what works and what doesn't work. So far, I am an expert on what doesn't work! We will take it day by day. I will find my little bag of tricks and hopefully it will get better. If my WBC drops to 1000 or under, they will most likely stop treatment until my levels come back to acceptable numbers. He said right now it is a fine line and a judgement call if we continue with the level they are at. He chose to do treatment on Tuesday. I would have to guess that was due to my overall health and age. Here's to being the youngest one in the infusion room!
I did meet a really nice lady this time around. It broke my heart to see her all hooked up and put a story to the body. I really enjoyed talking to her and learning about her and her battle with cancer. She was going in for a blood transfusion a few days after her treatment and she was so inspiring. She was so matter-of-fact, no fear. She is in a battle and it was just par for the course. In my defense, she has had a longer time to get used to the idea of putting poison in your veins. Our chat helped me and really enjoyed talking to her. It helped pass the time for both of us and I almost didn't notice that they put the drugs in the IV straight from the refrigerator!! OUCH!! That hurt!
I return on Tuesday for some more fun! Can't wait! NOT!
My appointment started with an appointment with the doctor. He took a bunch of notes and looked at me...I knew what was coming, I had looked at my lab paper on his desk while he was writing and I could see my lab values were not in the normal columns. Sure enough, my white blood cell counts are down. My hemoglobin, and platelets are down as well. As far as the white blood cell counts go, it could be dangerous and if they fall any lower I will have to do shots at home to increase their production. Wow! Sounds like an adventure! He explained that they were simple shots that Scott could do...ha ha! Any of you who know Scott, know that shots aren't something he can even look at, let alone give! He was gripping his chair and grimacing just at the thought that I would need these suckers...he can't be the one to give them to me....it will never happen.
So my doctor suggested a friend, possibly a friend who is a nurse...Maricris are you reading this??? Karen???? So I am starting a sign up list (just kidding) for shot givers! Initially I thought I would be able to give it to myself but after thinking about it, I may need some time to get acquainted with the idea. Unfortunately, I may not have "time." I do my blood work Monday, get the results Tuesday...
As for the platelets and hemoglobin, they require blood transfusions. Hmmm! This is just exciting all around the corner, isn't it?!?!? I'm O+ if anyone has a burning desire to bank blood for me. Right now a blood transfusion seems like the least of my worries. Am I wrong to have that attitude???
The WBC (white blood cell) count is the dangerous one. I can get a "life threatening" infection so I need to be careful. I am trying to stay out of crowded public places and snot nosed little kids (and that includes my own!) Makes it difficult when folks send their sick kids to school and my kids bring the nasty germs home. My kids have had a crash course of germ "etiquette." It will keep me out of the hospital and they understand those terms.
This round was bad. On Tuesday, treatment day, I felt okay. I wasn't really sick like last time. I came home, rested and waited for the assault to occur. Wednesday, Thursday, Friday, were bad. It is like having the worst flu in your life. No vomiting but just the most uncomfortable, sometimes painful, nausea. Mouth sores have not happened. I think I have figured out how to drown them out so them don't have a chance to develop. I drink tons of water the day of my treatment.
By Friday, I was feeling okay enough to go out. At 3 am I woke up in so much pain and discomfort, I stayed up the rest of the day. Scott tried to give me tea and sat with me while I tried to throw up but nothing really helped. We are still tinkering with remedies and what works and what doesn't work. So far, I am an expert on what doesn't work! We will take it day by day. I will find my little bag of tricks and hopefully it will get better. If my WBC drops to 1000 or under, they will most likely stop treatment until my levels come back to acceptable numbers. He said right now it is a fine line and a judgement call if we continue with the level they are at. He chose to do treatment on Tuesday. I would have to guess that was due to my overall health and age. Here's to being the youngest one in the infusion room!
I did meet a really nice lady this time around. It broke my heart to see her all hooked up and put a story to the body. I really enjoyed talking to her and learning about her and her battle with cancer. She was going in for a blood transfusion a few days after her treatment and she was so inspiring. She was so matter-of-fact, no fear. She is in a battle and it was just par for the course. In my defense, she has had a longer time to get used to the idea of putting poison in your veins. Our chat helped me and really enjoyed talking to her. It helped pass the time for both of us and I almost didn't notice that they put the drugs in the IV straight from the refrigerator!! OUCH!! That hurt!
I return on Tuesday for some more fun! Can't wait! NOT!
Thursday, December 10, 2009
One down...?? More to Go!
Phew! That was a doozy!! For being low dose I sure have felt like crud!
Let's rewind....Scott and I arrived on Tuesday at 11:30 and waited in the waiting room for about an hour..ugh! Maria is the chemo nurse and we love her. She tells us everything and is just really nice. Once we entered the infusion room I was bombarded with fear and anxiety. There were about 7 or 8 patients in there already hooked up to the IVs. Not one of them was younger than 70 years old or so. They were old and frail and sick. How did I end up in a place like this?!?
Before we started anything she asked if I had taken my anti-nausea medication. I had not and I have two different prescriptions so she walked me through the one I should take before treatments. It should last for 12 hours. The other should be taken after the 3rd day.
The nurse set up IV drip with sodium chloride and went to the other room to get the chemo drugs. Once about half the IV bag was gone she injected the methotrexate (bright yellow) into my IV and followed with Vebane (clear). I felt a bit light headed but nothing major. If I wasn't hypersensitive to every sensation, I might have not noticed.
She turned the IV back on to flush the chemo through my system. Once the IV bag was empty I was free to go! It was fairly quick. The IV was uneventful and I was actually kind of hungry. I was afraid the hunger wouldn't last so we picked up a sandwich for the way home.
I was only feeling tired when I got home, so I went to bed. I expected that, the nurse warned me about fatigue, nausea, vomiting, and diarrhea. That was to come later. A few hours later the nausea came. It never resulted in vomiting but it was pretty bad.
Side effects to expect were all present. I have just taken it very slow, listened to my body and tried to pick up and get ready for round number 2. The nurse did have a few things to tell me that I didn't already know...don't eat lettuce or other thin skinned foods that I don't wash thoroughly myself at home (do not eat these foods prepared elsewhere), flush the toilet twice to rid evidence of chemo waste (toxic toilet we call it at home :-), mouth sores WILL happen (and started to already), and lose of appetite.
It's been 2 1/2 days and things are getting better. Life goes on, the kids still have practice, homework and band! Pick up and move on...I expect next week will be worse...Let's hope I am wrong but this is for the birds!!
Let's rewind....Scott and I arrived on Tuesday at 11:30 and waited in the waiting room for about an hour..ugh! Maria is the chemo nurse and we love her. She tells us everything and is just really nice. Once we entered the infusion room I was bombarded with fear and anxiety. There were about 7 or 8 patients in there already hooked up to the IVs. Not one of them was younger than 70 years old or so. They were old and frail and sick. How did I end up in a place like this?!?
Before we started anything she asked if I had taken my anti-nausea medication. I had not and I have two different prescriptions so she walked me through the one I should take before treatments. It should last for 12 hours. The other should be taken after the 3rd day.
The nurse set up IV drip with sodium chloride and went to the other room to get the chemo drugs. Once about half the IV bag was gone she injected the methotrexate (bright yellow) into my IV and followed with Vebane (clear). I felt a bit light headed but nothing major. If I wasn't hypersensitive to every sensation, I might have not noticed.
She turned the IV back on to flush the chemo through my system. Once the IV bag was empty I was free to go! It was fairly quick. The IV was uneventful and I was actually kind of hungry. I was afraid the hunger wouldn't last so we picked up a sandwich for the way home.
I was only feeling tired when I got home, so I went to bed. I expected that, the nurse warned me about fatigue, nausea, vomiting, and diarrhea. That was to come later. A few hours later the nausea came. It never resulted in vomiting but it was pretty bad.
Side effects to expect were all present. I have just taken it very slow, listened to my body and tried to pick up and get ready for round number 2. The nurse did have a few things to tell me that I didn't already know...don't eat lettuce or other thin skinned foods that I don't wash thoroughly myself at home (do not eat these foods prepared elsewhere), flush the toilet twice to rid evidence of chemo waste (toxic toilet we call it at home :-), mouth sores WILL happen (and started to already), and lose of appetite.
It's been 2 1/2 days and things are getting better. Life goes on, the kids still have practice, homework and band! Pick up and move on...I expect next week will be worse...Let's hope I am wrong but this is for the birds!!
Friday, December 4, 2009
Tuesday It Is!
We had our "weekly" visit with Dr. Polansky and Tuesday will be THE day. I will go in for low dose chemo of methotrexate and vinblastine every Tuesday for the next three months. It will be evaluated to see if the tumors are "stable" and the next schedule will be determined. It will either stay the same (weekly) or change to three weeks on..one week off. It is a little sketchy what the schedule will be for sure but for now, it will be weekly for the first three months.
He also went over the side effects which will most likely be nausea and/or vomiting. He prescribed two different anti-nausea drugs and they in turn, also have side effects. Sheesh! So he went over the remedies for those secondary side effects. I should not lose my hair but it has happened in the past. My mane may become thinner if it doesn't fall out. Good times!!
Germs and infection are BAD! My kids and I are going to become germa-phobes (please bear with us). Anything over 100.4 is an immediate trip to the ER to check my white blood cell count and if I look or feel like "crap" (doctors words) they will check for hemoglobin and platelet counts. If they are too low, I will get a blood transfusion. More good times!
He doesn't expect anything too terribly exciting, which is good. I want to be as boring as possible. Text book..nothing exciting at all! These are my lofty goals for 2010. I am feeling good about this. It should be relatively uneventful and I plan to totally use all of the generous offers to help and listen to my body.
Tuesday starts the new and hopefully final battle. I am done with this!
He also went over the side effects which will most likely be nausea and/or vomiting. He prescribed two different anti-nausea drugs and they in turn, also have side effects. Sheesh! So he went over the remedies for those secondary side effects. I should not lose my hair but it has happened in the past. My mane may become thinner if it doesn't fall out. Good times!!
Germs and infection are BAD! My kids and I are going to become germa-phobes (please bear with us). Anything over 100.4 is an immediate trip to the ER to check my white blood cell count and if I look or feel like "crap" (doctors words) they will check for hemoglobin and platelet counts. If they are too low, I will get a blood transfusion. More good times!
He doesn't expect anything too terribly exciting, which is good. I want to be as boring as possible. Text book..nothing exciting at all! These are my lofty goals for 2010. I am feeling good about this. It should be relatively uneventful and I plan to totally use all of the generous offers to help and listen to my body.
Tuesday starts the new and hopefully final battle. I am done with this!
Wednesday, November 25, 2009
Progress
Scott and I headed out again today to visit Dr. Polonsky. He actually had my file ready and had some (although I use the term loosely) information. First, he said he still had a lot of questions (join the club), and he wanted to know what I wanted to do. Scott and I have gone around in circles all week long with this very tough decision. Initially, I was firm about wanting high dose. It was faster, more effective and for shorter amount of treatment time. Scott spoke with a few people who have actually experienced high dose chemo and they advised avoiding it at all costs! So! Here we were and the doctor is asking me what I want to do! Hmmm!
I expressed my concern with being able to tolerate the symptoms. He agreed it would be very tough. I asked what exactly the symptoms would be....silence. I can't say. You will be miserable was his only response. Hmmm...again!
I went on to explain my concern with the change of protocol. Dr. Eckardt (UCLA expert surgeon) said low dose chemo with methotrexate/velbane every week for a year. He spelled out the protocol once in his office and once on the phone. Now he was telling me another doctor said Dr. Eckardt (are you following this confusion??) prefers high dose (that's news to me!) He had an ah-ha moment or something because the light bulb went on and he said, yea that's what I thought, too.
I told him that I was now leaning towards low dose because all the desmoidian (new lingo I am learning...do you love it Karen!) blogs have patients who are going through low dose methotrexate/vinstabiline and not one case clearly defines a "standard" for high dose. He seemed interested in hearing what we found and where we found it. My research assistant and honorary desmoidian (my good friend Karen) has been scouring the internet for info and she hit a gold mine that she has shared with me. Long story short, he wants some of the links so he can investigate and consult with doctors with more experience. So we will share!
We touched on hormone therapy, specifically Tamoxifan and he explained the side effects are both very real and not at all benign. The dose is much higher than that of a breast cancer patient and the risks were very real. So we just glided over that....bye bye! Besides there is no real evidence that it will actually work. Results vary widely.
Cut to the chase, right?! We will meet again on Tuesday to knock out in writing and clear understanding what EXACTLY he wants to do. In the meantime, he will call Dr.'s Forcher (Cedar Sinai Sarcoma expert) and Chowla (Sarcoma expert recommended by Dr. Eckardt) for answers to his questions. I will get him the info from Karen's research. The plan from there is to start low dose chemo on Tuesday, December 8th.
I asked about a port...eeeks! He said, "do you want one?" Ah, no does anyone truly want one??? But more importantly, do I need one? He said, "let me see your veins." After squeezing the day lights out of my arm and me almost passing out (can't say what that was all about..I just froze while he was squeezing away). Apparently my veins are good enough for now. :-) So, no port but not ruled out forever.
BTW, I asked (but I already knew the answer) if he has ever treated someone with desmoids before. Nope! Man, my luck just NEVER seems to run out, does it!?!?! In his credit, he is researching and consulting with the best in our area but I felt as though I needed him to know that I am on to it and he better do right by me and my lawyer husband :-) Catch my drift doc. If you don't know what you are doing...say so and I will be on my merry way...
Next step, blood work on Monday, appointment on Tuesday, and hopefully a second opinion with a real expert. It will be an out-of-pocket expense because my insurance won't pay for me to see one but it will be worth it.
On a funny note, he presented my case at his tumor board and a surgeon who sits on the committee wanted to know why we are fussing around will all of this stuff. Why don't we just do another surgery. Yeah, I laughed, too! They all think they can save me....by cutting out all of my insides!! Even the expert Dr. Eckardt didn't think he could do it.
On a serious note. I am very thankful for all of you, my good friends. I may not see or talk to you every day but I know you are here for Scott and I and the kids. We truly, truly could not get through this ordeal without all of your support. We feel it and we are incredibly blessed.
Happy Thanksgiving!!
I expressed my concern with being able to tolerate the symptoms. He agreed it would be very tough. I asked what exactly the symptoms would be....silence. I can't say. You will be miserable was his only response. Hmmm...again!
I went on to explain my concern with the change of protocol. Dr. Eckardt (UCLA expert surgeon) said low dose chemo with methotrexate/velbane every week for a year. He spelled out the protocol once in his office and once on the phone. Now he was telling me another doctor said Dr. Eckardt (are you following this confusion??) prefers high dose (that's news to me!) He had an ah-ha moment or something because the light bulb went on and he said, yea that's what I thought, too.
I told him that I was now leaning towards low dose because all the desmoidian (new lingo I am learning...do you love it Karen!) blogs have patients who are going through low dose methotrexate/vinstabiline and not one case clearly defines a "standard" for high dose. He seemed interested in hearing what we found and where we found it. My research assistant and honorary desmoidian (my good friend Karen) has been scouring the internet for info and she hit a gold mine that she has shared with me. Long story short, he wants some of the links so he can investigate and consult with doctors with more experience. So we will share!
We touched on hormone therapy, specifically Tamoxifan and he explained the side effects are both very real and not at all benign. The dose is much higher than that of a breast cancer patient and the risks were very real. So we just glided over that....bye bye! Besides there is no real evidence that it will actually work. Results vary widely.
Cut to the chase, right?! We will meet again on Tuesday to knock out in writing and clear understanding what EXACTLY he wants to do. In the meantime, he will call Dr.'s Forcher (Cedar Sinai Sarcoma expert) and Chowla (Sarcoma expert recommended by Dr. Eckardt) for answers to his questions. I will get him the info from Karen's research. The plan from there is to start low dose chemo on Tuesday, December 8th.
I asked about a port...eeeks! He said, "do you want one?" Ah, no does anyone truly want one??? But more importantly, do I need one? He said, "let me see your veins." After squeezing the day lights out of my arm and me almost passing out (can't say what that was all about..I just froze while he was squeezing away). Apparently my veins are good enough for now. :-) So, no port but not ruled out forever.
BTW, I asked (but I already knew the answer) if he has ever treated someone with desmoids before. Nope! Man, my luck just NEVER seems to run out, does it!?!?! In his credit, he is researching and consulting with the best in our area but I felt as though I needed him to know that I am on to it and he better do right by me and my lawyer husband :-) Catch my drift doc. If you don't know what you are doing...say so and I will be on my merry way...
Next step, blood work on Monday, appointment on Tuesday, and hopefully a second opinion with a real expert. It will be an out-of-pocket expense because my insurance won't pay for me to see one but it will be worth it.
On a funny note, he presented my case at his tumor board and a surgeon who sits on the committee wanted to know why we are fussing around will all of this stuff. Why don't we just do another surgery. Yeah, I laughed, too! They all think they can save me....by cutting out all of my insides!! Even the expert Dr. Eckardt didn't think he could do it.
On a serious note. I am very thankful for all of you, my good friends. I may not see or talk to you every day but I know you are here for Scott and I and the kids. We truly, truly could not get through this ordeal without all of your support. We feel it and we are incredibly blessed.
Happy Thanksgiving!!
Wednesday, November 18, 2009
More Questions than Answers
Well, where do I start????? When we arrived he asked if I had an appointment. It wasn't obvious to him so I replied yes. He stated that I wasn't supposed to come this week but rather next week. This is news to me. He clearly said come in 1 week after you have the scans. So there I was and he wasn't prepared. My test reports were all over the office, some he never did locate. Everything was the same as far as he could tell but he also didn't have everything. He was kind of like the nutty professor. I am sure he is a great doctor but I was hoping for a more put together figure!
He spoke to one of the doctors that Dr. Eckardt said that he should speak to and the other didn't return his call. No surprise. The doc that did call back said that he recommended a more aggressive approach. Higher doses of methotrexate (same drug) and it would be harsh. He couldn't speak to how I would react but it is a very high dose and it will not be pleasant. It is a shorter run and carries 10% higher success rate.
The alternative is low dose over the course of a year in smaller amounts. The side effects are much less pronounced and it is given over the course of a year or so. The draw backs are that it will occur once a week for the year and it has less of an effect on destroying the tumor cells.
So the choice is ours. He wants us to think it over. Return next week with questions and in the mean time he will present my case to the tumor board and speak to that other doctor to see what he has to say. Scott asked the success rate in general and it is a disappointing 40%. I am starting an uphill battle from the get go.
He gave us some literature on methotrexate and described the protocol (albeit briefly.) If it is going to be low dose chemo, it will be delivered with another chemotherapy drug visbiline (or something like that). Both cases will be followed with a healthy cell boosting drug whose name escapes me at the moment (leucovorum.... something like that. It replaces the folate cycle..) Scott confiscated the literature once I read "can lead to death" on the first page. Not pleasant!!
So I will return next Wednesday afternoon to hopefully get this horror show on the road. I can't say that I am looking forward to it and I hope this time the doctor is prepared when I walk through the door :-)
Stacey
He spoke to one of the doctors that Dr. Eckardt said that he should speak to and the other didn't return his call. No surprise. The doc that did call back said that he recommended a more aggressive approach. Higher doses of methotrexate (same drug) and it would be harsh. He couldn't speak to how I would react but it is a very high dose and it will not be pleasant. It is a shorter run and carries 10% higher success rate.
The alternative is low dose over the course of a year in smaller amounts. The side effects are much less pronounced and it is given over the course of a year or so. The draw backs are that it will occur once a week for the year and it has less of an effect on destroying the tumor cells.
So the choice is ours. He wants us to think it over. Return next week with questions and in the mean time he will present my case to the tumor board and speak to that other doctor to see what he has to say. Scott asked the success rate in general and it is a disappointing 40%. I am starting an uphill battle from the get go.
He gave us some literature on methotrexate and described the protocol (albeit briefly.) If it is going to be low dose chemo, it will be delivered with another chemotherapy drug visbiline (or something like that). Both cases will be followed with a healthy cell boosting drug whose name escapes me at the moment (leucovorum.... something like that. It replaces the folate cycle..) Scott confiscated the literature once I read "can lead to death" on the first page. Not pleasant!!
So I will return next Wednesday afternoon to hopefully get this horror show on the road. I can't say that I am looking forward to it and I hope this time the doctor is prepared when I walk through the door :-)
Stacey
Thursday, November 12, 2009
Blood tests, scans and follow up appointments
I had my blood tests on Tuesday. Lots of blood! My CT scans of the chest, abdomen, and pelvis were today. The barium upset my stomach something fierce! That hasn't happened in the past but I am feeling better this evening. The CT scans of my body minus my limbs was to determine if this sucker is contained or spreading. The technician and I have become more friendly so instead of trying to hide her pity for me she gives up the info an little more freely.
My follow up appointment is scheduled for Wednesday in the afternoon. This is either going to be an okay day or an awful day. Not much really to look forward to but I pray for strength to get through it. I know that I can get through whatever they throw at me. I am not going to lie though, I am scared. Hopefully, he will have consulted with the "experts" and they will not have suggested a more aggressive approach.
I'll be in touch!
My follow up appointment is scheduled for Wednesday in the afternoon. This is either going to be an okay day or an awful day. Not much really to look forward to but I pray for strength to get through it. I know that I can get through whatever they throw at me. I am not going to lie though, I am scared. Hopefully, he will have consulted with the "experts" and they will not have suggested a more aggressive approach.
I'll be in touch!
Thursday, November 5, 2009
Thankful for all of you!
I have received so many emails from so many friends offering love, prayers and most of all help. You are all so amazing! I know I can't get through this without all of you. I am so grateful for having each and everyone of you in my life and I know together we will be one awesome army to kick this thing in the pants!!!
Thank you and I love you all!!!!
Thank you for loving me, too :-)
Thank you and I love you all!!!!
Thank you for loving me, too :-)
Pathology 101
I received a call from Dr. Polonsky's office this afternoon. Seems he wants to take a birds eye view of my pathology slides for himself. Foothill Presbyterian (where I had both of my surgeries and 4 out of my 5 kiddies were born) has always been amazing. They processed the request within minutes of my fax granting permission. They are off to the chemo doc (Dr. Polonsky) in the morning for his review.
Does beg the question....what is he looking for? Speculation will only bring worry but I can't help myself!
Does beg the question....what is he looking for? Speculation will only bring worry but I can't help myself!
Tuesday, November 3, 2009
New Doctor
Scott and I met with the hematologist/medical oncologist this afternoon. He was very personable and empathetic but needed to look into what it is that he wants to do with me. Scott tries to reassure me this isn't a terrible thing but with my track record I was hoping for more.
He sent me away with an order for lots of blood work and lots of CT scans. My whole body, in fact! He wants to see if this sucker has spread anywhere else. After an examination, he did seem a tinge worried by some swelling in my throat and when pressing on my stomach my back hurt. I am truly in a great amount of pain. I have never experienced pain like this so something has changed in my body...key will be to find out what.
The plan is to get the scans (yummy potions to drink, mmmm can't wait!) and see him a week after the blood work and scans. Hopefully the scans will be approved quickly and appointment made quickly. I will get on it tomorrow. Once we have all that info he will devise a plan of action.
In the meantime, he has spoken to Dr. Eckardt (expert at UCLA) and Dr. E has given him the names of the doctors he would have liked me to see but the insurance denied. So this new doc has agreed to brainstorm with the experts (next best thing to actually seeing them, I think). He did paint a pretty grim picture of chemotherapy though. I will be hospitalized for a few days while the drugs tear me apart and they put me back together again. This approach doesn't sound anything like Dr. E described so one could conclude they changed their minds. We will go over all of the conditions (he went over elevated temperatures with me several times...says infection could kill me :-( and specifics to me once we have a game plan.
Like I said, he was very personable. He is concerned for me and my family. Lectured me on the merits of letting you all help me, as difficult as that can be, I need to do it! So I will try with all my might. He even pushed me with the skills of clearly demonstrating what I need. No vagueness...I need this from you. Period. He gave lessons on asking how to ask for help.
So as you might imagine, we were there for a while but I feel like he gets how we feel. How this has been such a long road for us and we just want an end to it all. I think what they say, be careful what you wish for...well it just bit me in the a$%! I am very concerned for what these drugs will do to me. How sick I will be....How it will affect the kids...and Scott....so much unknown but the biggest unknown...will this work?!?!?!
He sent me away with some powerful drugs to help manage the pain BUT I can't drive while on them. It will be a challenge since I am a stay-at-home mom to FIVE kids! But he tried and I will try.
You are up-to-date. Next step...CT scan city. They know me well enough there. I'll keep you posted
He sent me away with an order for lots of blood work and lots of CT scans. My whole body, in fact! He wants to see if this sucker has spread anywhere else. After an examination, he did seem a tinge worried by some swelling in my throat and when pressing on my stomach my back hurt. I am truly in a great amount of pain. I have never experienced pain like this so something has changed in my body...key will be to find out what.
The plan is to get the scans (yummy potions to drink, mmmm can't wait!) and see him a week after the blood work and scans. Hopefully the scans will be approved quickly and appointment made quickly. I will get on it tomorrow. Once we have all that info he will devise a plan of action.
In the meantime, he has spoken to Dr. Eckardt (expert at UCLA) and Dr. E has given him the names of the doctors he would have liked me to see but the insurance denied. So this new doc has agreed to brainstorm with the experts (next best thing to actually seeing them, I think). He did paint a pretty grim picture of chemotherapy though. I will be hospitalized for a few days while the drugs tear me apart and they put me back together again. This approach doesn't sound anything like Dr. E described so one could conclude they changed their minds. We will go over all of the conditions (he went over elevated temperatures with me several times...says infection could kill me :-( and specifics to me once we have a game plan.
Like I said, he was very personable. He is concerned for me and my family. Lectured me on the merits of letting you all help me, as difficult as that can be, I need to do it! So I will try with all my might. He even pushed me with the skills of clearly demonstrating what I need. No vagueness...I need this from you. Period. He gave lessons on asking how to ask for help.
So as you might imagine, we were there for a while but I feel like he gets how we feel. How this has been such a long road for us and we just want an end to it all. I think what they say, be careful what you wish for...well it just bit me in the a$%! I am very concerned for what these drugs will do to me. How sick I will be....How it will affect the kids...and Scott....so much unknown but the biggest unknown...will this work?!?!?!
He sent me away with some powerful drugs to help manage the pain BUT I can't drive while on them. It will be a challenge since I am a stay-at-home mom to FIVE kids! But he tried and I will try.
You are up-to-date. Next step...CT scan city. They know me well enough there. I'll keep you posted
Tuesday, October 27, 2009
Appointment Tuesday
I have resigned to the idea that I won't get exactly what I want...so I have made an appointment to see Dr. Yee. Dr. Newman (my surgeon) says he likes her and she works out of many hospitals. I will see her in her Arcadia office on Tuesday. They were kind on the phone and bumped up the appointment once I expressed the amount of pain that I am in. Feeling, empathetic staff....what a concept!!
Monday, October 26, 2009
DENIED!!!
Appeal has been denied! Moving forward....feels like more in circles than forward but it is what it is! Good news is that they did not deny the treatment just the doctor giving the treatment. He is out of my network but then again so is Dr. Eckardt. I don't understand managed care. The doc they said I could go see is affiliated with the jokers who gave me radiation. So while I am resigned to the idea that I won't get exactly what I want....I will not go back to the three ring circus of Inter-Community hospital for chemo.
Moving on....
Moving on....
Wednesday, October 21, 2009
Pending..
I did hear from Blue Shield yesterday letting me know that the appeal is in process and I should hear a decision no later than Thursday. I am not sure exactly how the appeal works but atleast they are communicating with me. That's one for the lonely positive column :-)
Monday, October 19, 2009
More BAD News!!!!
I put a call into my medical group to inquire about my authorization. It has been denied for the doctor that Dr. Eckardt wants me to go see and it has been re-directed to a doctor in my network and approved for that doctor. I am not interested in being any one's guinea pig any longer! I want to be treated by a doctor who doesn't have to go on the Internet to research my condition while I sit and wait in the exam room. I have been patient...obedient...a model patient. I don't question, pester or harass. I have done everything they asked of me to expedite my treatment and healing but that approach has not worked. I will not settle because they think it will be cheaper. In the long run how has their approach saved them money???? I don't believe we would still be dealing with this if I had been directed to the appropriate doctors long ago but in an effort to save money....we cut corners! And at my expense!
I have formally appealed their decision. So I wait for what I am sure will be a failed attempt but I had to try. The other option that I think may work will be to change my primary care doctor to the network that these doctors belong. I really don't know if this will work though...suggestions anyone. I need help with this one.
Tomorrow is another day and IF Tara calls me back, she may be able to guide me. Wishful thinking but miracles do happen, right? I haven't lost hope just frustrated beyond words! I am getting a real education in the finer workings of the health care system in our country and it sucks! We have been wanting to ditch the HMO and change to a PPO but with my problems it's too risky. Couple that with Cameron's heart problems....well it's just too risky. We could wind up with no insurance at all.......
I have formally appealed their decision. So I wait for what I am sure will be a failed attempt but I had to try. The other option that I think may work will be to change my primary care doctor to the network that these doctors belong. I really don't know if this will work though...suggestions anyone. I need help with this one.
Tomorrow is another day and IF Tara calls me back, she may be able to guide me. Wishful thinking but miracles do happen, right? I haven't lost hope just frustrated beyond words! I am getting a real education in the finer workings of the health care system in our country and it sucks! We have been wanting to ditch the HMO and change to a PPO but with my problems it's too risky. Couple that with Cameron's heart problems....well it's just too risky. We could wind up with no insurance at all.......
Saturday, October 17, 2009
Friday, October 16, 2009
Waiting Patiently..
I still have no word regarding the status of my authorization to see the new medical oncologist, so I called Terrific Tara to inquire about the status. As you probably imagine, she hasn't heard anything either. I don't this they usually take this long. She instructed me to call my medical group but since they just merged with another company I don't have the info. I asked her to give it to me and she volunteered to do it for me. Hmmmm! Maybe someone got in trouble for being so RUDE to everyone! Things are looking up in the world!
I should expect a call today to let me know how things are going...
I should expect a call today to let me know how things are going...
Monday, October 12, 2009
Waiting for an Authorization
The lovely assistant to Dr. Eckardt has kindly done her job and submitted my authorization for approval. We are waiting to hear back from the insurance for approval for me to see a new medical oncologist at Cedars. Shouldn't be a problem BUT this is me we are talking about so that means we should expect a problem... haha!
Still haven't lost my sense of humor :-)
Still haven't lost my sense of humor :-)
Saturday, October 10, 2009
Chemo It Is!
Heard back from Dr. Eckardt yesterday and he says they want to try chemo with methotrexate and velbane for 12 months. I should hear back from his office on Monday regarding the treating oncologist, Dr. Forscher. He works out of Cedar Sinai and specializes in sarcomas.
I am not going to lie, I am having trouble digesting all of this. It is too much right now. Baby steps...
I am not going to lie, I am having trouble digesting all of this. It is too much right now. Baby steps...
Thursday, October 8, 2009
Test Results Are In..
Tests results from last Friday are in and as expected, my ovaries are not functioning. Radiation menapause. It could be temporary because of my age but for now, I am in radiation menapause and only time will tell if it is permanent.
Good News???
If you came here for good news, I don't think I can deliver but did you really expect that I would? Me neither.
After sitting in Dr. Eckard's office with Scott for FOUR hours, he didn't really give us a definitive answer. The studies weren't done at UCLA so it is difficult for him to compare the studies and definitively decipher if indeed the tumors are larger BUT given the fact that the report states they are AND I continue to have pain, chemo is probably next.
He will present my case again at the Tumor Review Board and render a decision either for another surgery or chemo. He agrees with Dr. Newman that the consistency of these tumors are so similar to the muscle tissue that they are sandwiched between that it will make it difficult to take them out completely. I understand what they are explaining better after having seen the MRI images yesterday. The tumors aren't that pronounced but you can see the little spiny edges that they have always been so worried about.
This is the same approach he took when he recommended radiation so I am very sure that he will come back saying chemo. He called it a low dose chemo and even gave us the names of the drugs but it was all too much to take in and I don't recall. Scott wants me to stay off of the Internet so if he recalls he isn't saying so.
The one positive thing that came out of yesterday was that he HAS seen and treated similar cases and eventually he got the tumors to stop growing. Hopefully I will fall into that category soon.
The Tumor Review Board meets today so I should expect an answer the beginning of next week. The staff over there isn't too swift so I will keep after them to remind them about little ole me :-)
After sitting in Dr. Eckard's office with Scott for FOUR hours, he didn't really give us a definitive answer. The studies weren't done at UCLA so it is difficult for him to compare the studies and definitively decipher if indeed the tumors are larger BUT given the fact that the report states they are AND I continue to have pain, chemo is probably next.
He will present my case again at the Tumor Review Board and render a decision either for another surgery or chemo. He agrees with Dr. Newman that the consistency of these tumors are so similar to the muscle tissue that they are sandwiched between that it will make it difficult to take them out completely. I understand what they are explaining better after having seen the MRI images yesterday. The tumors aren't that pronounced but you can see the little spiny edges that they have always been so worried about.
This is the same approach he took when he recommended radiation so I am very sure that he will come back saying chemo. He called it a low dose chemo and even gave us the names of the drugs but it was all too much to take in and I don't recall. Scott wants me to stay off of the Internet so if he recalls he isn't saying so.
The one positive thing that came out of yesterday was that he HAS seen and treated similar cases and eventually he got the tumors to stop growing. Hopefully I will fall into that category soon.
The Tumor Review Board meets today so I should expect an answer the beginning of next week. The staff over there isn't too swift so I will keep after them to remind them about little ole me :-)
Tuesday, October 6, 2009
Tomorrow is the BIG day!
Well, tomorrow Scott and I will travel to Santa Monica to see Dr. Eckardt and hope he has a few trick up his sleeves!!! Many thanks to all of you who offered to help with the many Wheeler kids tomorrow. It was tricky to figure out but I think we got it all worked out. My friends, you have been amazing and I am so very lucky to have you to see me through this maze!
Dr. Kassar, my ob-gyn says that the radiation has put me in pre-mature menapause :-( so that explains some of the things going on with my body. It would have been nice if someone had told me so the news threw me for quite a loop! The symptoms have been there for a couple of months but who would have supected menapause at 38 years old. Certainly not me. So I am sad...not that we were planning any more kids but it sure would have been nice to be in the loop instead of thrown for a loop! My doctor will get back with me with test results that he took on Friday and we will deal with this, too.
Ah! It never seems to end! This past week has been emotional for me, duh, right!?!?! I'm a fighter...I will get through this...but I need you all more than ever. Hopefully tomorrow will bring some positive, INFORMATIVE feedback. I need a game plan and the unknown is really killing me!
I'll be in touch
Dr. Kassar, my ob-gyn says that the radiation has put me in pre-mature menapause :-( so that explains some of the things going on with my body. It would have been nice if someone had told me so the news threw me for quite a loop! The symptoms have been there for a couple of months but who would have supected menapause at 38 years old. Certainly not me. So I am sad...not that we were planning any more kids but it sure would have been nice to be in the loop instead of thrown for a loop! My doctor will get back with me with test results that he took on Friday and we will deal with this, too.
Ah! It never seems to end! This past week has been emotional for me, duh, right!?!?! I'm a fighter...I will get through this...but I need you all more than ever. Hopefully tomorrow will bring some positive, INFORMATIVE feedback. I need a game plan and the unknown is really killing me!
I'll be in touch
Thursday, September 24, 2009
Could have been better news...
Well, the news wasn't great....the tumors have gotten bigger. I asked if it is reasonable to believe that the growth could be the result of the lapse in time between March 9th (the MRI) and June 1 (the first radiation treatment). He said yes but he didn't want to commit to anything further or continue to theorize about the activity. I respect that. I wouldn't want him to guess and try to figure it out from there. Dr. Newman believes that Dr. Eckardt at UCLA is my best hope for figuring this out. I respect that opinion as well. I also expected all that happened today. There were no surprises. I am disappointed but I also expected to walk away with those feelings.
So my next step is getting through the Teflon at Dr. Eckardt's office. Mary at Dr. Newman's office took care of the sordid details and rude receptionists and successfully made an appointment for me on Oct. 7th at UCLA. That day ought to be a doozy :-) My appointment is at 1:45pm in Santa Monica. With all of the kids pick ups and practices in between. I was grateful to get in so soon so I didn't want to complain about the time regardless of how difficult it will be. Oh well! Difficult is my middle name...or so it seems!
I really could have used some good news today, but I didn't get it. I am getting kind of used to the idea that some things just aren't going to go my way but I always build myself up to believe I will catch a break. Not this time.
So my next step is getting through the Teflon at Dr. Eckardt's office. Mary at Dr. Newman's office took care of the sordid details and rude receptionists and successfully made an appointment for me on Oct. 7th at UCLA. That day ought to be a doozy :-) My appointment is at 1:45pm in Santa Monica. With all of the kids pick ups and practices in between. I was grateful to get in so soon so I didn't want to complain about the time regardless of how difficult it will be. Oh well! Difficult is my middle name...or so it seems!
I really could have used some good news today, but I didn't get it. I am getting kind of used to the idea that some things just aren't going to go my way but I always build myself up to believe I will catch a break. Not this time.
Tuesday, September 22, 2009
MRI Complete
My MRI was done today. The technician repeatedly commented on how "beautiful" my pictures were coming out... So being the kind of person that I am, I looked for the underlying message she was trying to deliver. What does beautiful mean to an MRI tech? Does she mean that the tumors are crystal clear or not there anymore?????? Wishful thinking on my part???? I really don't know. She was really trying to be encouraging but that could just have been her part in trying to keep me from breathing while she was scanning (I was holding my breath throughout parts of the scan.)
I was able to get her to expedite my results and the ensuing report to facilitate my appointment on Thursday with Dr. Newman, my surgeon. So Scott and I will head to see our favorite doc, Dr. Newman. While we don't feel anyone really wants to do another surgery right now, he is willing to see us and sort through all of our options. It's not really within the realm of my treatment plan right now but we are so very grateful that he has taken such a liking to us and he willing to help in any way that he can. I have to say, just that act, has given me such comfort.
These past few days have been difficult, I'm not going to lie. I am sure darker days are ahead but I have faith. I have to...my kids need me to be strong. It has been difficult.
Thursday will hopefully be a very productive day. Scott will be with me to pick me up if need be. I'll keep you posted.
Oh and the radiation seems to have killed my ovary :( I will have another doctors appointment to look into that first week in October. I will spare the male visitors the details but no I'm not pregnant...just suffering the effects of radiation therapy.
I was able to get her to expedite my results and the ensuing report to facilitate my appointment on Thursday with Dr. Newman, my surgeon. So Scott and I will head to see our favorite doc, Dr. Newman. While we don't feel anyone really wants to do another surgery right now, he is willing to see us and sort through all of our options. It's not really within the realm of my treatment plan right now but we are so very grateful that he has taken such a liking to us and he willing to help in any way that he can. I have to say, just that act, has given me such comfort.
These past few days have been difficult, I'm not going to lie. I am sure darker days are ahead but I have faith. I have to...my kids need me to be strong. It has been difficult.
Thursday will hopefully be a very productive day. Scott will be with me to pick me up if need be. I'll keep you posted.
Oh and the radiation seems to have killed my ovary :( I will have another doctors appointment to look into that first week in October. I will spare the male visitors the details but no I'm not pregnant...just suffering the effects of radiation therapy.
Saturday, September 19, 2009
Tuesday, September 15, 2009
Still NO Word
Well as you might have imagined, I still have heard nothing from the radiation oncologist or his staff. I went in to have the blood work done yesterday that is needed for the scan. I called this afternoon to inquire about the scan, specifically why it is taking so long. Most times I have the authorization and referral in hand before leaving the office. I left the office last Thursday and they still don't have a clue why I don't have it. I have a suspicion....they are MORONS! :-)
Thursday, September 10, 2009
Another Yahoo in the house!!! UGH!!
Scott and I went to the hospital this morning for a visit with Dr. Z, the radiation oncologist. To my surprise (and I should learn by now) he didn't appear at the door. Another "fill-in" doctor came in to try and conquer the great mystery that lives in my body. After getting all of the facts straight and in her defense there are quite a bit to wrap your head around, she bluntly declared that radiation clearly didn't work! I have the bump on my back that sits slightly above the first two scars that has been there since February but without having first done a scan I didn't expect anyone to declare defeat just yet.
Not only did she decide that it was unsuccessful she also raised the white flag and surrendered. Yup, you read that right, she doesn't see what else can be done for me. Live with it! She doesn't know why this is happening and she doesn't know how to stop it. "Have you been on the Internet?", she asked. Scott spoke up and let her know that he banned me from the Internet where my back is concerned. There is only bad news out there and it really got me in a funk over the summer. She wanted to know what my research yielded. Kinda strange...I don't remember ever being in medical school. I mean I can offer the lay person perspective but did she really want to rely on that????
She offered to drug me up to help me with the pain. When I refused she offered jalapeno cream. Yup, re-read that one, too! Jalapeno cream? Never heard of it and somehow I think I will have to pass on trying to even find such an animal. To a large extend, my visit was a waste. Nothing she said did I allow to penetrate my brain. I don't accept that I can't be helped. I don't accept that I am to live my life in pain all the while allowing aggressive tumors to grow in my body. I asked her at what point would she suggest that we address what is sure to become a huge swelling in my back. How big and how much pain would I have to be in to be worth saving????
When she asked what we would like to do...duh if I had a clue I would have treated myself long ago, I told her I would at least like to get a look at it from a scientific perspective. Ah...MRI....CT Scan anyone? She then asked ME what one was better!! It was so off the wall, it was surreal. Scott said, uh maybe an MRI? Dr. Scotty, as I now call him, is calling the shots! Scary!!
I will have to do blood work before they can do the scan so that puts it all a few days away. I only pray the insurance doesn't hold matters up but they shouldn't be a problem. After I thought about being abandoned by the doctor I decided to call my trusty surgeon and his sidekick Mary. Since the radiation oncologist basically said you are on your own lady and much luck to ya, I didn't know where to turn. What should my next step be since they didn't know what else to do with me? This is a horrible feeling!!
Luckily for me Mary is a sweetheart and she offered to make an appointment with Dr. Newman once the scan is ordered. He would sit down with us, look at the scan reports and together we would decide what my best options are for the next step. Mind you, I don't have a NEED for a surgeon, nor do I have an authorization to see him. It is with the care that he gives his patients to help them that he is doing this for me.....because he cares about his patients and wants to give them the best possible care regardless of the circumstances they are faced with. And in my case, the circumstances happen to be that he isn't the doctor who can fix it nor is he getting paid to help me but he is helping me to see that I don't lost in the shuffle. I can't say enough about these two human beings! They have picked me up EVERY time these buffoons have dropped me and while I feel so incredibly discouraged, I also feel incredibly blessed that they are here to help me navigate my way through managed care hell!
So I will keep you posted. It's been a rough day but I've been through them before and I will get through this, too. But I am tired of the uphill battle. I need a reprieve....
Not only did she decide that it was unsuccessful she also raised the white flag and surrendered. Yup, you read that right, she doesn't see what else can be done for me. Live with it! She doesn't know why this is happening and she doesn't know how to stop it. "Have you been on the Internet?", she asked. Scott spoke up and let her know that he banned me from the Internet where my back is concerned. There is only bad news out there and it really got me in a funk over the summer. She wanted to know what my research yielded. Kinda strange...I don't remember ever being in medical school. I mean I can offer the lay person perspective but did she really want to rely on that????
She offered to drug me up to help me with the pain. When I refused she offered jalapeno cream. Yup, re-read that one, too! Jalapeno cream? Never heard of it and somehow I think I will have to pass on trying to even find such an animal. To a large extend, my visit was a waste. Nothing she said did I allow to penetrate my brain. I don't accept that I can't be helped. I don't accept that I am to live my life in pain all the while allowing aggressive tumors to grow in my body. I asked her at what point would she suggest that we address what is sure to become a huge swelling in my back. How big and how much pain would I have to be in to be worth saving????
When she asked what we would like to do...duh if I had a clue I would have treated myself long ago, I told her I would at least like to get a look at it from a scientific perspective. Ah...MRI....CT Scan anyone? She then asked ME what one was better!! It was so off the wall, it was surreal. Scott said, uh maybe an MRI? Dr. Scotty, as I now call him, is calling the shots! Scary!!
I will have to do blood work before they can do the scan so that puts it all a few days away. I only pray the insurance doesn't hold matters up but they shouldn't be a problem. After I thought about being abandoned by the doctor I decided to call my trusty surgeon and his sidekick Mary. Since the radiation oncologist basically said you are on your own lady and much luck to ya, I didn't know where to turn. What should my next step be since they didn't know what else to do with me? This is a horrible feeling!!
Luckily for me Mary is a sweetheart and she offered to make an appointment with Dr. Newman once the scan is ordered. He would sit down with us, look at the scan reports and together we would decide what my best options are for the next step. Mind you, I don't have a NEED for a surgeon, nor do I have an authorization to see him. It is with the care that he gives his patients to help them that he is doing this for me.....because he cares about his patients and wants to give them the best possible care regardless of the circumstances they are faced with. And in my case, the circumstances happen to be that he isn't the doctor who can fix it nor is he getting paid to help me but he is helping me to see that I don't lost in the shuffle. I can't say enough about these two human beings! They have picked me up EVERY time these buffoons have dropped me and while I feel so incredibly discouraged, I also feel incredibly blessed that they are here to help me navigate my way through managed care hell!
So I will keep you posted. It's been a rough day but I've been through them before and I will get through this, too. But I am tired of the uphill battle. I need a reprieve....
Wednesday, August 12, 2009
Healing..
Well the 8 days that followed the end of my daily treatments were by far the most difficult of this whole radiation chapter. The entire area opened to oozing, raw sores that could have easily gotten infected. A week after I called the hospital in tears begging for them to give me something to prevent the yellow/green oozing and to stop it from drying and sticking to my clothes. Then I would rip it off and it would start to ooze and bleed. It was terrible! They told me there wasn't anything else...just hang in there.
I am happy to report that I am much better now. The past week has found new skin forming over the burns and dry irritated skin. I can take that much better! I can now bear to have clothing around my waist band and I feel like a new person! Yea!
The fatigue still plagues me but I see small improvements from day to day. I try not to forget that they say it could take a couple of months to get back to normal so I am trying to allow myself the room for recovery.
I have an appointment next on the 8th @11 am. Scott will come with me to help sort through all of the facts and unanswered questions. My brain seems to check out after so much input and it is often not stellar news!!
Prayers are needed to help me kick this thing in the tail! This HAS to work!
I am happy to report that I am much better now. The past week has found new skin forming over the burns and dry irritated skin. I can take that much better! I can now bear to have clothing around my waist band and I feel like a new person! Yea!
The fatigue still plagues me but I see small improvements from day to day. I try not to forget that they say it could take a couple of months to get back to normal so I am trying to allow myself the room for recovery.
I have an appointment next on the 8th @11 am. Scott will come with me to help sort through all of the facts and unanswered questions. My brain seems to check out after so much input and it is often not stellar news!!
Prayers are needed to help me kick this thing in the tail! This HAS to work!
Thursday, July 30, 2009
Ouch!
Some of my dear friends are curious to see what radiated skin looks like. All modesty went out the window 5 kids ago! :-) Here ya go! My skin is breaking down big time. I have one blister that continues to grow. I am a tinge worried about infection but i am on top of it.
Wednesday, July 29, 2009
It's a GOOD day!
I went into Tuesday expecting to have another treatment at the very least...3 at the very most. One of the techs said to the other, "this is it, right?" I popped up and said "what is it?" They both just looked at me and smiled. They said the doctor prescribed 8 "boost" treatments and this was #8...you are done after today. :-)
They also mentioned that it is a good thing because they didn't think my skin could take another day. And how! So, today was my first radiation free day and it feels like Saturday to me. They were right about my skin. Imagine taking a blow torch to your skin...and that pretty much is what it feels like. The skin has really broken down and the open sores are very painful. Today, more blisters have emerged and I am just waiting for them to pop....more open sores.
The good news is that I am done! It can only get better from this point on out...right? I have an appointment with the doctor in a month to assess the damage and scan those pesky tumors to see what they are doing. Please keep me and those pesky tumors in your prayers. They have to stop growing for this to be the end of my story. I fear what the next course of action is...so they have to stop growing! It would be a bonus if they shrunk but I will settle for stopping them in there tracks!
That's all for now, I am sure news won't be flowing in daily but I will keep you posted.
They also mentioned that it is a good thing because they didn't think my skin could take another day. And how! So, today was my first radiation free day and it feels like Saturday to me. They were right about my skin. Imagine taking a blow torch to your skin...and that pretty much is what it feels like. The skin has really broken down and the open sores are very painful. Today, more blisters have emerged and I am just waiting for them to pop....more open sores.
The good news is that I am done! It can only get better from this point on out...right? I have an appointment with the doctor in a month to assess the damage and scan those pesky tumors to see what they are doing. Please keep me and those pesky tumors in your prayers. They have to stop growing for this to be the end of my story. I fear what the next course of action is...so they have to stop growing! It would be a bonus if they shrunk but I will settle for stopping them in there tracks!
That's all for now, I am sure news won't be flowing in daily but I will keep you posted.
Monday, July 27, 2009
Okay, I asked the million dollar question...
I started the morning out asking what my status was regarding the number of treatments remaining. There was some confusion....one tech felt that I had to finish my regular sessions and then begin an 8 boost treatment sequence. Yikes! I told them that is why I was afraid to ask. The assured me they would look into it after my treatment.
I also demanded to see the nurse because to me, it didn't make sense to put moisturizer on an open wound. There has to be something better than Aquaphor for the breaking down skin. I kind of got what I was looking for....she gave me a powder called Domeboro. You mix it with a quart of water and apply only to the open sores 3 times a day. I was advised multiple times to NOT apply it to the other skin that is still intact. That takes me applying it out of the question. It is in an awkward location.
After my visit with the nurse, I saw one of the techs and she wasn't sure if I had two more treatments or five. She will speak to the doctor when he comes in and tell me the verdict when I go in tomorrow.
So, true to form no one at this joint knows what is going on....SCARY!!
I also demanded to see the nurse because to me, it didn't make sense to put moisturizer on an open wound. There has to be something better than Aquaphor for the breaking down skin. I kind of got what I was looking for....she gave me a powder called Domeboro. You mix it with a quart of water and apply only to the open sores 3 times a day. I was advised multiple times to NOT apply it to the other skin that is still intact. That takes me applying it out of the question. It is in an awkward location.
After my visit with the nurse, I saw one of the techs and she wasn't sure if I had two more treatments or five. She will speak to the doctor when he comes in and tell me the verdict when I go in tomorrow.
So, true to form no one at this joint knows what is going on....SCARY!!
Friday, July 24, 2009
Some Answers....Finally!
I went in today and I guess my face really just says it all about how I am feeling! I can barely get off of the table when I am done with the treatment and they asked what was going on with me...if I was okay. I explained the dramatic increase in pain that I am feeling not only on my left side but also the right. The pain is in the bones and muscles and shockingly, it is to be expected. Thanks for the heads-up!
As it turns out, my skin looks good for the amount of radiation that I am getting. They are surprised that I don't have a bad reaction on my tummy also. I am grateful that I have no evidence on the front side :-) The radiation is travelling through healthy bones and tissues to get to the tumors and the pain is a result of damage to the healthy stuff...makes sense. The pain that I am having on my right side is also a direct result of the treatments. They are also treating the right side and the effects are being felt in my muscle tissue and bones. So in short, it is all normal but hurts like crazy!!
Once I have finished with all of my treatments, I will have a month off and then I will return to the doctor. At the one month mark I should begin to heal the healthy stuff and feel better. I was told that if I don't start to feel better, I need to mention it to the doctor. So, finish treatments....wait a month....start to feel better! I was hoping for something more immediate but hey! I can do this!! I move like I am 100 years old but I CAN do this!
I still think I have 6 treatments left but with all the conversation that happened today, I just couldn't add that to it. Hopefully I will see someone on Monday and I can ask the radiation/IMRT question and the treatment number at that time. I sure hope that they don't throw me a curve ball....that is what has kept me going. I am tired, I hurt and gosh darn it I want to sleep in and do nothing one of these days!!!
As it turns out, my skin looks good for the amount of radiation that I am getting. They are surprised that I don't have a bad reaction on my tummy also. I am grateful that I have no evidence on the front side :-) The radiation is travelling through healthy bones and tissues to get to the tumors and the pain is a result of damage to the healthy stuff...makes sense. The pain that I am having on my right side is also a direct result of the treatments. They are also treating the right side and the effects are being felt in my muscle tissue and bones. So in short, it is all normal but hurts like crazy!!
Once I have finished with all of my treatments, I will have a month off and then I will return to the doctor. At the one month mark I should begin to heal the healthy stuff and feel better. I was told that if I don't start to feel better, I need to mention it to the doctor. So, finish treatments....wait a month....start to feel better! I was hoping for something more immediate but hey! I can do this!! I move like I am 100 years old but I CAN do this!
I still think I have 6 treatments left but with all the conversation that happened today, I just couldn't add that to it. Hopefully I will see someone on Monday and I can ask the radiation/IMRT question and the treatment number at that time. I sure hope that they don't throw me a curve ball....that is what has kept me going. I am tired, I hurt and gosh darn it I want to sleep in and do nothing one of these days!!!
Tuesday, July 21, 2009
Not Much Newsworthy to Report
Upon returning to treatment I have experienced one "machine malfunction". That was on Monday, July13th. When I returned on Tuesday for the first treatment of the week, I received a large red circle on my back. Strangly, it looks like I got hit with a soccer ball and it left a red mark in it's wake. I don't know why it suddenly looks like I have a new treatment area, one that is much wider.
I have a few theories....ONE, I am entering into the final weeks of treatment. I heard them talking about a "boost" when referring to my treatment. I don't know what it was about but I noticed the beams were delivered for a longer amount of time than previous treatments. TWO, I received a notice from my insurance yesterday explaining that my doctors request for IMRT was denied. Remember, I began treatment on June 1st...why would the denial just now be coming in.... Why wouldn't the doctor wait for approval before beginning treatment???? My thoughts, for what they are worth.... They were aware that IMRT was denied and I was never told that I will not be getting IMRT. Hmm! So much for giving informed consent. I plan to address this with the radiation oncologist, once I get my visit with him. Thus far, it has never happened. So either I never received IMRT or they switched my treatments mid-stream, thus the big red circle burn. Who knows!!
As for my poor beef jerky of a back....it is red, black, and very tender. I have taken to wearing dresses to keep EVERYTHING off of my back. No waistband from shorts or pants has helped with the pain. The only other remedy that they can offer me is Aquaphor (lotion which is like Vaseline), which I am using. I know this is all normal and to be expected but man, this hurts!! My treatment area is large and while I am grateful it is all being covered, it does add quite a bit of pain.
Tumor pain is another animal. Lately, over the past 4-5 days I have been in a lot of pain from the tumors. The muscle area which is affected is sore and very painful. I spent the past two days in bed just trying not to move. As if that isn't bad enough, the other side of my back has been also giving me trouble. I don't know the cause and I was hoping to address this all with the doctor on my regular Monday visit with the nurse. But by now, you've probably already guessed how things go for me :-) I didn't see anyone yesterday. Gotta love it!
They only remedy they've offered me in the past was pain pills. I already have them from surgery and for the past two days I've been using them. So needless to say, I have a lot of questions. The ladies I see daily can see that I move a lot slower and I am in a lot more pain. They either choose not to answer the questions or cannot, so I get nowhere with them.
If my calculations are correct, and pray with me that they are :-), I only have 9 more treatments left!! That should put my last treatment on Aug 3 providing we don't have any more issues with machine failure/maintenance. I can do this and one day I will brush it off as no big deal. While in the midst of it though, it is a big deal and I do struggle with it all from time to time. The pain, the uncertainty it gets the better of me at times but there is no time for that and I move on.
I have a few theories....ONE, I am entering into the final weeks of treatment. I heard them talking about a "boost" when referring to my treatment. I don't know what it was about but I noticed the beams were delivered for a longer amount of time than previous treatments. TWO, I received a notice from my insurance yesterday explaining that my doctors request for IMRT was denied. Remember, I began treatment on June 1st...why would the denial just now be coming in.... Why wouldn't the doctor wait for approval before beginning treatment???? My thoughts, for what they are worth.... They were aware that IMRT was denied and I was never told that I will not be getting IMRT. Hmm! So much for giving informed consent. I plan to address this with the radiation oncologist, once I get my visit with him. Thus far, it has never happened. So either I never received IMRT or they switched my treatments mid-stream, thus the big red circle burn. Who knows!!
As for my poor beef jerky of a back....it is red, black, and very tender. I have taken to wearing dresses to keep EVERYTHING off of my back. No waistband from shorts or pants has helped with the pain. The only other remedy that they can offer me is Aquaphor (lotion which is like Vaseline), which I am using. I know this is all normal and to be expected but man, this hurts!! My treatment area is large and while I am grateful it is all being covered, it does add quite a bit of pain.
Tumor pain is another animal. Lately, over the past 4-5 days I have been in a lot of pain from the tumors. The muscle area which is affected is sore and very painful. I spent the past two days in bed just trying not to move. As if that isn't bad enough, the other side of my back has been also giving me trouble. I don't know the cause and I was hoping to address this all with the doctor on my regular Monday visit with the nurse. But by now, you've probably already guessed how things go for me :-) I didn't see anyone yesterday. Gotta love it!
They only remedy they've offered me in the past was pain pills. I already have them from surgery and for the past two days I've been using them. So needless to say, I have a lot of questions. The ladies I see daily can see that I move a lot slower and I am in a lot more pain. They either choose not to answer the questions or cannot, so I get nowhere with them.
If my calculations are correct, and pray with me that they are :-), I only have 9 more treatments left!! That should put my last treatment on Aug 3 providing we don't have any more issues with machine failure/maintenance. I can do this and one day I will brush it off as no big deal. While in the midst of it though, it is a big deal and I do struggle with it all from time to time. The pain, the uncertainty it gets the better of me at times but there is no time for that and I move on.
Sunday, July 12, 2009
Broken Skin
Well, it finally happened. I spent most of the week/week-end since Thursday on the baseball field and my skin has been itching like crazy. So, naturally, I scratched it. Well, that was a bit of a mistake. I broke the thin, fragile layer of skin in a small area at my waistline. It was only a matter of time. Hopefully I will see the doctor tomorrow, or at the very least the nurse. I keep trudging on :)! It's the only way to be!!
Wednesday, July 8, 2009
Back On the Saddle
I started back up with my daily appointments on Tuesday. They took more x-rays and more blood work. Don't know if that is normal or exactly why they do this. I asked the "fill-in" doctor when I last saw a doctor and she said the x-rays don't measure the tumor but rather are for the sole purpose of treatment planning. Personally, that doesn't make sense to me. Wouldn't you like to see if the tumor is larger or smaller so that you could make adjustments to the delivery of the beam? Keep in mind that I am receiving IMRT which specifically targets the tumor by it's dimensions. If the tumor is in fact getting larger, which I think it is based on the pain, wouldn't you then need to increase the dimensions of the radiation being delivered? Just my thoughts but remember this doctor didn't recognize that I currently have tumors actively growing inside my wonderfully hospitable body :-)
So, I am tired again and a little queasy. It must just be getting started up again. I am still pink and tender but nothing I can't handle. Bring it on!
So, I am tired again and a little queasy. It must just be getting started up again. I am still pink and tender but nothing I can't handle. Bring it on!
Monday, July 6, 2009
We're Back!!
We returned home this evening from Steamboat Springs, CO. Cameron and his team did it! The Chino Hills Storm went 7 and 0 to capture the title of World Series Champions! We are so very proud of them and I wouldn't have missed this for the world!It was also a very nice break for me. I hardly ever thought about what is ahead/behind me. I start up again first thing in the morning. Hopefully this past week has given my skin the rest it needs so that I won't experience the unpleasant side effects of radiation therapy.
GO STORM!!
Tuesday, June 30, 2009
I'm Here!
I went into Friday's appointment unsure of my plans for the following week. I received my treatment and when I turned to the technician she said, "see you on the 7th. Have fun in Colorado." FINALLY I got a response that actually acknowledged the many conversations that we were all having. So, on Monday morning instead of jumping on the freeway I boarded a plane to Steamboat Springs, Colorado.
I have thought back a few times since then about my part in directing my care. I didn't want to do that at all. I knew if I didn't go it would be difficult for me. Scott would have left four kids with me and left with only one. If I went, I would be taking a break from my treatment and I have wondered many times if that will alter the efficacy of my treatment. So I guess only time will tell.
The nurses and all those I saw on Friday seemed to think it was not really a big deal. I am resting as much as I can and my skin is getting a much needed break. My hip bone is hurting more and I will need to ask about that when I return. I am somewhat afraid of the answer so I haven't yet mentioned it to anyone. I know, that's not good Stacey :-)
My family has all arrived safely in Colorado and I am going to give it my best shot to try to forget that this is part of my life for the mean time. I need a decent break from tumors, hospitals and radiation. I am thankful to be in this beautiful place with family and friends.
I have thought back a few times since then about my part in directing my care. I didn't want to do that at all. I knew if I didn't go it would be difficult for me. Scott would have left four kids with me and left with only one. If I went, I would be taking a break from my treatment and I have wondered many times if that will alter the efficacy of my treatment. So I guess only time will tell.
The nurses and all those I saw on Friday seemed to think it was not really a big deal. I am resting as much as I can and my skin is getting a much needed break. My hip bone is hurting more and I will need to ask about that when I return. I am somewhat afraid of the answer so I haven't yet mentioned it to anyone. I know, that's not good Stacey :-)
My family has all arrived safely in Colorado and I am going to give it my best shot to try to forget that this is part of my life for the mean time. I need a decent break from tumors, hospitals and radiation. I am thankful to be in this beautiful place with family and friends.
Wednesday, June 24, 2009
No One Here Knows ANYTHING!
Okay, well I brought Cameron with me to my appointment because he had an appointment soon after my treatment and the nurse chatted with him while I was being "zapped." They struck up a good conversation about our future plans in Colorado and she was mentioning this to me. I told her, funny thing you should mention us travelling to Colorado.....do you know that I plan to go and miss 6 treatments.....next week!? Of course, you already know the answer as do I. She looked a bit confused and then smiled. Huh?
I explained the situation and the inquiries that I have made over the past few days. She said that while she was not aware of the plan as long as the doctor gave the okay, there is nothing to be concerned about. I explained that I am beginning to question whether the doctor knows or not! Since I have not spoken with him about it directly, I am not confident with the wishy washy responses that I have received. I want to go but I don't want to worry about the consequences of missing those treatments.
She explained that many patients are doing the same thing because of planned vacations and travels that have been interrupted by life. I would imagine they are things like graduations, weddings.... She said don't worry about it and we will pick up where we left off when I return. I feel better but would feel much better if I could just speak to the illusive doctor! Why is he better protected than the President? At times I wonder about his actual existence but for the fact that I met with him once upon a time.
So, I will try to get the desired response tomorrow. Hey! No one can say that I haven't tried, right? As of now, I plan to go unless I am told by Dr. Z it will be detrimental to my treatment which at this point doesn't appear to be the case.
I explained the situation and the inquiries that I have made over the past few days. She said that while she was not aware of the plan as long as the doctor gave the okay, there is nothing to be concerned about. I explained that I am beginning to question whether the doctor knows or not! Since I have not spoken with him about it directly, I am not confident with the wishy washy responses that I have received. I want to go but I don't want to worry about the consequences of missing those treatments.
She explained that many patients are doing the same thing because of planned vacations and travels that have been interrupted by life. I would imagine they are things like graduations, weddings.... She said don't worry about it and we will pick up where we left off when I return. I feel better but would feel much better if I could just speak to the illusive doctor! Why is he better protected than the President? At times I wonder about his actual existence but for the fact that I met with him once upon a time.
So, I will try to get the desired response tomorrow. Hey! No one can say that I haven't tried, right? As of now, I plan to go unless I am told by Dr. Z it will be detrimental to my treatment which at this point doesn't appear to be the case.
Tuesday, June 23, 2009
Still No Answers!
Ugh! I went in for my daily visit and on the way out asked about my travelling next week. Still no answers. Ya know how the saying goes, the right hand doesn't know what the left hand is doing? Well, she said, "if you didn't show up next Monday, then we would know that you weren't coming in." I am a little bit uncomfortable with that approach, particularly since I have never personally discussed it with the doctor. Messages were relayed and expressed outside my presence. I brought up the subject for peace of mind and I have everything BUT that! I don't want to compromise the efficacy of my treatment but if it won't effect it either way, I would like to go see my boy play ball with my family. I will try again tomorrow for a more reassuring answer....
Monday, June 22, 2009
Stay or Go?
Well, it's Monday which means I get the visit with the nurse but today I got to see the doctor instead. Wrong doctor BUT still a doctor! I saw the "fill-in" doc because my doctor was not in today. Anyway, I asked all of my questions that have been burning me up lately, namely what is our goal for treatment???? After she told me that I didn't have any tumors currently, I asked her to revisit my chart to save her further embarassment. Oh yeah, looks like you have two...duh! So the short answer is that radiation therapy for these types of tumors don't significantly shrink anything :( The best we can really expect is for the growth to stop. I am concerned because of the pain factor. I truly don't want to live my life in this pain, forever! I still have hope but she doused it a bit with her "info." I also mentioned that I can feel that my symptoms have increased which is an indication of the tumors growth. Which lead to my next question....
What should my expectations be for this point in my treatment? Should it still be growing? Are they checking to see if the treatment is working? With 14 treatments under my belt, I only have 2 weeks completed. I should have another month to month and a half still to go. It is really too early to expect any changes at this point. The scans they have done thus far are for positioning and not measurement of any growth or dare I say shrinkage :-)... Once treatment is done, we will scan for measurement and location...blah, blah, blah...
The burning question is whether or not I will be traveling with Cameron and the rest of my family to Colorado. Wouldn't you know, she couldn't answer that question. In all fairness to her though, how could she answer that question...she isn't my doctor! Keep in mind I haven't seen my radiation oncologist since FEBRUARY! So I will ask MY doctor tomorrow for a more clear and definitive answer. I was told before treatment would begin that I would need a break at that point and traveling would be okay. The "fill-in" doc though says she is worried of my side effects from the radiation complicating matters being away from home, ugh!
The symptoms at this point are "pink" skin in the treatment area, dry, itchy skin and fatigue. They are giving pointers on how best to moisturize the skin to keep it from becoming unbearably uncomfortable. I am working it out and in all honesty the pain is more intolerable from the tumor than from the treatment. It just down right HURTS! I have been down this road a few times and it is extremely evident to me that the tumor is growing.
What should my expectations be for this point in my treatment? Should it still be growing? Are they checking to see if the treatment is working? With 14 treatments under my belt, I only have 2 weeks completed. I should have another month to month and a half still to go. It is really too early to expect any changes at this point. The scans they have done thus far are for positioning and not measurement of any growth or dare I say shrinkage :-)... Once treatment is done, we will scan for measurement and location...blah, blah, blah...
The burning question is whether or not I will be traveling with Cameron and the rest of my family to Colorado. Wouldn't you know, she couldn't answer that question. In all fairness to her though, how could she answer that question...she isn't my doctor! Keep in mind I haven't seen my radiation oncologist since FEBRUARY! So I will ask MY doctor tomorrow for a more clear and definitive answer. I was told before treatment would begin that I would need a break at that point and traveling would be okay. The "fill-in" doc though says she is worried of my side effects from the radiation complicating matters being away from home, ugh!
The symptoms at this point are "pink" skin in the treatment area, dry, itchy skin and fatigue. They are giving pointers on how best to moisturize the skin to keep it from becoming unbearably uncomfortable. I am working it out and in all honesty the pain is more intolerable from the tumor than from the treatment. It just down right HURTS! I have been down this road a few times and it is extremely evident to me that the tumor is growing.
Thursday, June 18, 2009
Checking In...
No news really. Much of the same. I saw the nurse on Monday. Apparently I am experiencing no skin changes....which is news to me! My tattoos seem to be really small so they continue to mark on me with pen but at least the stickers are gone :)
The machine will be down tomorrow for maintenance. This news is a mixed bag. I will actually get to sleep in past 6:30 am BUT this just tacks another day on this lovely experience. I so desparately want this to be OVER!!
The machine will be down tomorrow for maintenance. This news is a mixed bag. I will actually get to sleep in past 6:30 am BUT this just tacks another day on this lovely experience. I so desparately want this to be OVER!!
Friday, June 12, 2009
Tattoos-Yeah?
Well, today I FINALLY received the long awaited tattoos. One of the technicians was inquiring about my poorly adhered stickers and my nurse popped her head out and asked "do you want tattoos?" Hmmmm, is that a trick question? My answer was simply that I didn't want to constantly deal with the stickers rubbing off and the rash that ensues because of them. Do people really keep stickers on the same spot of their skin for over seven weeks?!?!!?
She said, "so you do want them?" Yeah, I think. She replied, "I just am always so hesitant about hurting people." Then she left the room and said "here we go!" I lay there for a good twenty minutes thinking what on earth is she going to do to me? Well, as it turns out, it was not really a big deal. No more than the prick that you feel when you have blood drawn....times three. I have three pretty little dots and no more stickers!!
They also sent me down to the lab for some blood work. I assume that this is routine but you know what they say about assuming....
She said, "so you do want them?" Yeah, I think. She replied, "I just am always so hesitant about hurting people." Then she left the room and said "here we go!" I lay there for a good twenty minutes thinking what on earth is she going to do to me? Well, as it turns out, it was not really a big deal. No more than the prick that you feel when you have blood drawn....times three. I have three pretty little dots and no more stickers!!
They also sent me down to the lab for some blood work. I assume that this is routine but you know what they say about assuming....
Thursday, June 11, 2009
One blasted sticker is GONE!
Well, I guess they have finally come to their senses and can see the stickers and I just don't get along. They ripped one off today and marked me with a marker instead. I have cute X's all over my back like a treasure map. There is still another sticker that is need of some attention but OBVIOUSLY we take baby steps at this joint :-)!
The radiation tech is beginning to open up to me and I quite like her. I guess she has come to the realization that I will greet her with a "good morning" (even if it isn't) and leave her with "have a great day." She is beginning to treat me like more than a piece of meat and an actual human. She has 2 cute boxer dogs and has their pictures on the machine for the patients who are sunny side up. I am not but she showed me them yesterday anyway. They are cute and we struck up a great conversation.
My treatments are 4 times longer than they were last week. I am taking 20-30 minutes in the room. Today my hands fell asleep from being in the same position for so long. It made me chuckle. All the nuances that accompany radiation. All the peculiarities...I see to experience them all! Go figure!!
I finish this week tomorrow and look forward to a much needed rest. I have been very exhausted and with all of the kids activities this week, it has been trecherous!
I'll be in touch...
The radiation tech is beginning to open up to me and I quite like her. I guess she has come to the realization that I will greet her with a "good morning" (even if it isn't) and leave her with "have a great day." She is beginning to treat me like more than a piece of meat and an actual human. She has 2 cute boxer dogs and has their pictures on the machine for the patients who are sunny side up. I am not but she showed me them yesterday anyway. They are cute and we struck up a great conversation.
My treatments are 4 times longer than they were last week. I am taking 20-30 minutes in the room. Today my hands fell asleep from being in the same position for so long. It made me chuckle. All the nuances that accompany radiation. All the peculiarities...I see to experience them all! Go figure!!
I finish this week tomorrow and look forward to a much needed rest. I have been very exhausted and with all of the kids activities this week, it has been trecherous!
I'll be in touch...
Tuesday, June 9, 2009
Well...I have given up on the tattoos. They just replaced my very torn and tattered sticker. The reaction from the stickers can't be any worse than the effects of radiation. Today marked the end of 5 successful radiation treatments and they started off today with some more scans and x-rays. Not sure why, the communicative bunch didn't offer, and I didn't ask. They were kind enough to move my appointment time around to allow me to keep my dental appointment, I didn't want to bombard them with questions. I just wasn't in the mood.
They also "changed things up a bit" (their words). After the scans I had my 6th treatment. Instead of the usual 2 beams that are delivered, there were 6 or 7 all about a minute each. They are trying to bake me :-) and they are succeeding. The treatment area is sore and tender but still nothing I can't handle but I can see the progression and it doesn't excite me. Sooner, rather than later, I can see the area unbearable. Hey, I may surprise myself! Only time will tell and there is no getting off this ride so I will ride it out.
Tomorrow is another day :-)
I hope it's a good one for all!
They also "changed things up a bit" (their words). After the scans I had my 6th treatment. Instead of the usual 2 beams that are delivered, there were 6 or 7 all about a minute each. They are trying to bake me :-) and they are succeeding. The treatment area is sore and tender but still nothing I can't handle but I can see the progression and it doesn't excite me. Sooner, rather than later, I can see the area unbearable. Hey, I may surprise myself! Only time will tell and there is no getting off this ride so I will ride it out.
Tomorrow is another day :-)
I hope it's a good one for all!
Monday, June 8, 2009
Back At It
Well I got back on the saddle today. Treatment number 5 was uneventful and I saw the nurse. They still did not do the tattoos, and I mentioned to them that the stickers were hanging on by a thread. I was surprised that I even had to mention it to them because they were staring right at them when they did my treatment. They weren't concerned but I am! It is barely hanging on. I pray that they address it tomorrow because it is causing quite a bit of stress.
The nurse wanted to see me and examine the area to make sure that it hasn't blistered yet. I am surprised the reaction hasn't been as gradual as I thought it would be. I have a nice little sunburn and it is uncomfortable. It isn't unbearable but certain movements are more bothersome than others. I compensate and adjust. Nothing I can't handle.
Saturday was a horrible day. I felt lousy throughout the whole day. Sunday was a great day. I felt really well but that changed of course today. I will get used to the roller coaster and roll with the punches.
My friends and family have been wonderful. I am glad many of you are making use of the blog. I will try to keep it current. I rely on your support and prayers and FEEL that we will get through this. My dear friend Vicky went out and bought me comfy, pretty dress to help with my "tan". Thank you for lifting me up! You all do with your own person touch.
That's all for tonight. I'll keep you posted on my "tats".
Stacey
The nurse wanted to see me and examine the area to make sure that it hasn't blistered yet. I am surprised the reaction hasn't been as gradual as I thought it would be. I have a nice little sunburn and it is uncomfortable. It isn't unbearable but certain movements are more bothersome than others. I compensate and adjust. Nothing I can't handle.
Saturday was a horrible day. I felt lousy throughout the whole day. Sunday was a great day. I felt really well but that changed of course today. I will get used to the roller coaster and roll with the punches.
My friends and family have been wonderful. I am glad many of you are making use of the blog. I will try to keep it current. I rely on your support and prayers and FEEL that we will get through this. My dear friend Vicky went out and bought me comfy, pretty dress to help with my "tan". Thank you for lifting me up! You all do with your own person touch.
That's all for tonight. I'll keep you posted on my "tats".
Stacey
Friday, June 5, 2009
No Tattoos
No tattoos today. Machines were up and running. I woke up feeling much better. I hope it continues throughout the day. I have 2 days off and then I go back for 5 more treatments next week. I got the impression I will see the doctor every Monday. I am supposed to see him every week and since I didn't see him this week, it has to be Monday....I think :-)
Thursday, June 4, 2009
Machine Down
I received the call today that the machine was not working. I will add a treatment to the end of my list and hope tomorrow it will be fixed. I am also supposed to get my tattoos tomorrow. I hope it happens (I think) because the stickers are driving me CRAZY and I don't know how much longer they will stay put. All of the edges are pulling up.
I am not sure why it has happened so soon but I feel terrible. I am nauseous, have a headache and I am exhausted. Food isn't all that appealing either but I know I have to eat so Scott is standing over me and making me do it. Radiation or virus?
I am not sure why it has happened so soon but I feel terrible. I am nauseous, have a headache and I am exhausted. Food isn't all that appealing either but I know I have to eat so Scott is standing over me and making me do it. Radiation or virus?
Tuesday, June 2, 2009
Two Down!!
Today went much smoother. I was called in a little before 9 and I was in the elevator at 9:05 heading for my car. Quick and easy! It is getting easier to walk through the door into that room. I figure by the end of the week, I will be used to the routine. Thirty-five more to go!
Monday, June 1, 2009
1 down 36 to go!
Well, it finally happened!! I received my first of 37 treatments today. It went very much like my trial run on Friday. The doctor didn't put all of the fields into the computer though, so I had to wait for the physicist to come down and enter them into the computer. It wouldn't have been that bad if I hadn't already been positioned, so I couldn't move for 30 minutes and if I wasn't scared out of my mind! It was an emotionally exhausting day but I got through it!
Friday, May 29, 2009
Marked Up and Ready To Go!
Today they took me back to the machine and did more measurements, set-up and scans. It took about 30 minutes with my head burried in the pillow, so I don't know really what they did. I do know they took the old stickers off and added more. The new stickers will need to stay on until next Friday when they hope to put on the tatoos. They also made a lovely scalloped edge marking along my whole side. Not sure what that is all about and they are pretty robotic when it comes to procedure.
That is my chief complaint at this point. While I understand that they do they countless times a week, I only do it once. For me, it is frightening, the unknown. They have never offered explaination or comfort. A simple lay down, don't move, we'll be right back is the best I have received. I thrive when given information. I don't shy away from it, even if it scares me to death. Information gives me control again. Today, I lost control. I must have shown it in my face because their demeanor changed but I had 30 minutes to suck it up and get over it. I couldn't do anything about it so I went to a "happy place :-) I appreciate that they recognized the fear but I had hoped they would be more sensitive to it before they actually saw it. Surely I can't be the only patient who has apprehension the first time they see and hear everything.
It is what it is. I am ready, I think for the real stuff to happen. I have daily appointments at 9 a.m. until the kids get out of school for summer break. After that, my appointments will be at 8 a.m. This early time will allow the kids to stay home with Scott until I get back and should only delay his appointments by 30 minutes, an hour at the most.
That's all for now. Thank you all for checking in on me today.
That is my chief complaint at this point. While I understand that they do they countless times a week, I only do it once. For me, it is frightening, the unknown. They have never offered explaination or comfort. A simple lay down, don't move, we'll be right back is the best I have received. I thrive when given information. I don't shy away from it, even if it scares me to death. Information gives me control again. Today, I lost control. I must have shown it in my face because their demeanor changed but I had 30 minutes to suck it up and get over it. I couldn't do anything about it so I went to a "happy place :-) I appreciate that they recognized the fear but I had hoped they would be more sensitive to it before they actually saw it. Surely I can't be the only patient who has apprehension the first time they see and hear everything.
It is what it is. I am ready, I think for the real stuff to happen. I have daily appointments at 9 a.m. until the kids get out of school for summer break. After that, my appointments will be at 8 a.m. This early time will allow the kids to stay home with Scott until I get back and should only delay his appointments by 30 minutes, an hour at the most.
That's all for now. Thank you all for checking in on me today.
Wednesday, May 27, 2009
Still Waiting
If you can believe it...I didn't hear from the doctor regarding radiation tomorrow. What a shock! I called to inquire about the schedule so I could take care of the kids and all of the school pick-ups. I was told I was not on the books and Dr. Z was not ready yet. Huh??? What has he been doing for the past week and a half?!?! I was told to wait for him to call later today.
He didn't call but the nurse did. I will go in on Friday for more x-rays and set up. I wonder if this radiation plan will ever get started or if it is just a cruel tease.
I patiently wait, what else can I do?
He didn't call but the nurse did. I will go in on Friday for more x-rays and set up. I wonder if this radiation plan will ever get started or if it is just a cruel tease.
I patiently wait, what else can I do?
Monday, May 25, 2009
Hopefully this week..
I still haven't heard exactly when I will officially start radiation. The planning for IMRT takes about a week. They estimate it will be sometime on Thursday afternoon of this week. With the holiday, I don't think I will hear until Wednesday. They told me to expect Thursday around 1 or 1:30 pm- ugh! That is when my day really starts picking up with all of the kids. I will find a way to make it work. My daily appointments will be more manageable they said. It is the simulation that will need to take place in the afternoon. I only hope I will get some time to ask the doctor some questions. Up to this point it has all been the technicians and nurses. While they are very patient with my questions, they don't offer the information. I have to drag it out of them and I don't always think of the questions on the spot. It is more than a little frustrating. I know this has to happen but I do have questions about several things, specifically do they think this is going to work???
And yes, the hospital is local (Covina). Thankfully they realized what a hardship it would be to travel to UCLA daily for treatment. Covina isn't Chino Hills but it is much better than Santa Monica!
And yes, the hospital is local (Covina). Thankfully they realized what a hardship it would be to travel to UCLA daily for treatment. Covina isn't Chino Hills but it is much better than Santa Monica!
Thursday, May 21, 2009
Info on IMRT
This is what I found out about IMRT...interesting reading.
There IS hope!!
http://www.irsa.org/imrt.html
There IS hope!!
http://www.irsa.org/imrt.html
Wednesday, May 20, 2009
I'm a Marked Woman!!
I had my appointment to start the radiation today. I underwent a treatment planning CT scan and they marked big black X's on the perimeter of my scars. They are on stickers that will need to stay put until my next appointment. Dr. Z will use IMRT in my treatment planning which will require a few additional days of work. When I asked what IMRT was I was told Intense M (can't remember the word, magnified??) Radiation Therapy. It will mean a more concentrated focus of the radiation...whatever that means. I can only guess it means they will target the tumors. Makes sense. They estimate that I will be ready for a run through appointment on Thursday and the actual radiation to start of Friday. I'll wait to hear from them with a time. Here's to hoping they are better at communicating than Dr. Eckardt's office :-)
Monday, May 18, 2009
Let the Radiation Begin!!
I spoke to the radiation technician and Dr. Z wants to get started right away. I will go in on Wednesday for the treatment planning CT and to set the marks on my back. He also mentioned that he just finished treating another patient with a similar diagnosis and she didn't tolerate the treatment very well because of the location of the scar. It was at the waist....wonderful! Not to be outdone...I have 2 of those very long suckers...at the waist!! It had to do with the location of the scar and the waistline on her clothing. One of my scars lies just at the low waist and, you guessed it, the other lies just at the waist. The style of clothing these days has already been bothering me at the waist because of the way my scars have keloid. They feel I will be in the same boat and may need to take a week break in the middle of treatment to let the skin close and heal. Sounds yummy, huh? I guess you will be seeing me in a lot of "moo-moos" this summer. Oh and that beautiful pool we just built, won't be doing much of that either. Bummer! But, as always, I am looking on the bright side and I am very thankful no surgery is involved.
Wednesday, May 13, 2009
Today is the DAY!!
I had finally had enough of this waiting patiently business and called the doctor. I had to leave a message but I was very clear that I expected a call from the big guy himself....today! Tomorrow will be three weeks since I last saw or heard anything from him. No more playing it nice for me. I need to move on with my life and get this show on the road.
About an hour later, he actually called me. Well, his every so pleasant (not!) secretary called me and then proceeded to put me on hold. Dr. Eckardt explained that he presented my case before the tumor review board and they concluded that further surgery would not be beneficial at this point. They agreed that since I have not yet tried radiation, we should move forward on that path.
I spoke to my primary surgeon and he got on the phone anxious to hear what I had to report. He asked me if they agreed with the tissue samples and the final diagnosis. Hugh? It makes all the alarm bells go off in the back of my head again. They were soooo sure this was soft tissue sarcoma the first time around...what if they were right? And missed it? I can't go there but it still lingers in my head and pops up ever so often. Dr. Eckardt didn't say anything to the contrary and I didn't even think to ask that question. Dr. Newman assured me that Dr. Eckardt is the "expert" and while he thought his opinion was "interesting" he supported it because he is the "expert".
Next step: I called Dr. Z to get back on track for radiation. They will send out for a new authorization...oh joy! That ought to take another month! She said it might only be a couple of days. Let's see who is right! Oh, and of course Dr. Z wasn't there to speak with me about what I might expect with the latest developments so he will call tomorrow. I will be in Sacramento with Brendon so he may not catch me on the phone. I don't know any details regarding how many treatments or when they expect they will begin. It's almost guaranteed that they will start while the kids are on summer break which isn't ideal for me but hey! What can I do?
Dr. Eckardt wants to follow up with me every 6 months with a fresh MRI. This was good news for me because we will have documentation of any possible growth or the death of this awful experience. One can only hope! :-) So that's all for now. The next few weeks are up in the air and filled with lots of uncertainty but I know they don't include scaples and THAT makes me incredibly happy.
It's a good day!
About an hour later, he actually called me. Well, his every so pleasant (not!) secretary called me and then proceeded to put me on hold. Dr. Eckardt explained that he presented my case before the tumor review board and they concluded that further surgery would not be beneficial at this point. They agreed that since I have not yet tried radiation, we should move forward on that path.
I spoke to my primary surgeon and he got on the phone anxious to hear what I had to report. He asked me if they agreed with the tissue samples and the final diagnosis. Hugh? It makes all the alarm bells go off in the back of my head again. They were soooo sure this was soft tissue sarcoma the first time around...what if they were right? And missed it? I can't go there but it still lingers in my head and pops up ever so often. Dr. Eckardt didn't say anything to the contrary and I didn't even think to ask that question. Dr. Newman assured me that Dr. Eckardt is the "expert" and while he thought his opinion was "interesting" he supported it because he is the "expert".
Next step: I called Dr. Z to get back on track for radiation. They will send out for a new authorization...oh joy! That ought to take another month! She said it might only be a couple of days. Let's see who is right! Oh, and of course Dr. Z wasn't there to speak with me about what I might expect with the latest developments so he will call tomorrow. I will be in Sacramento with Brendon so he may not catch me on the phone. I don't know any details regarding how many treatments or when they expect they will begin. It's almost guaranteed that they will start while the kids are on summer break which isn't ideal for me but hey! What can I do?
Dr. Eckardt wants to follow up with me every 6 months with a fresh MRI. This was good news for me because we will have documentation of any possible growth or the death of this awful experience. One can only hope! :-) So that's all for now. The next few weeks are up in the air and filled with lots of uncertainty but I know they don't include scaples and THAT makes me incredibly happy.
It's a good day!
Saturday, May 9, 2009
STILL Waiting
I finally became impatient enough to put a call into the doctor. I was told that he didn't go to review board last week and that he just presented my case on Thursday. UGH! Why is nothing ever easy?! I am sure he had good reason for not presenting cases last week but communication is a beautiful thing, isn't it? So, the earliest I should expect to hear from him regarding their decision was Friday, which didn't happen. The latest I should expect a call is Monday. I should pretty much be on pins and needles all day. Wish me luck!
Friday, May 1, 2009
Still Reviewing
The tumor review board met yesterday to review my case. I am told it could take the doctor up to a week to call me with their recommendation. So, I sit and wait.
Thursday, April 23, 2009
Meet Dr. Eckardt
Wow! What a drive! Scott and I met Dr. Eckardt this morning. He is a really nice man. He explained that this is a benign condition with very aggressive, abnormal markers. These tumors are in the family of sarcomas but they are not a matastatic disease. He also isn't so sure that surgery would be helpful. He explained that these tumors are similar in make up to the muscle tissue they are sandwiched between. It is difficult to determine where one ends and the other begins. There is often microscopic amounts left behind as well. He feels I would benefit from a "fair amount" of radiation.
I took in my MRI images and the pathology slides from both surgeries and he will have the radiologist and pathologist at UCLA look at them and present their findings to the tumor review board. They will meet one week from today and discuss my case. It is here that my treatment plan will be devised.
I have not gone in for the second MRI. I don't know if it is necessary. It has been approved if I need it.
I took in my MRI images and the pathology slides from both surgeries and he will have the radiologist and pathologist at UCLA look at them and present their findings to the tumor review board. They will meet one week from today and discuss my case. It is here that my treatment plan will be devised.
I have not gone in for the second MRI. I don't know if it is necessary. It has been approved if I need it.
Wednesday, April 22, 2009
An Appointment....Finally
I put a call into Dr. Eckardt's office and as luck would have it, his usually telephone greeter wasn't there. The very helpful woman on the other end tied up all the loose ends and offered an appointment for tomorrow. Scott and I are off to Santa Monica for an 8 AM appointment in the morning.
Monday, April 20, 2009
MRI Approved
The MRI is approved. I have an appointment on Thursday. It is for the lumbar spine, with and without contrast. Still no appointment with Dr. Eckardt.
Prayer Quilt
A good friend of mine had a prayer quilt made for me at her church. She delivered it to me this morning. The ladies did a beautiful job and I was so very touched. Thank you Karen :-)
Monday, April 13, 2009
Spring Break
The kids are off this week for Spring Break. I won't try to push anything this week. I am going to enjoy a week off from homework and enjoy my kids. They are enjoying the pool. It is going to be a great week and I won't let anything spoil our relaxation.
Friday, April 10, 2009
Another MRI
Dr. Eckardt's office wants another MRI. Why? Nobody knows. The last MRI was 3/26/09 and another MRI wouldn't show anything different. Mary does all the work anyway to see what they will say.
Thursday, April 9, 2009
Still No Appointment
Dr. Eckardt's office still won't schedule an appointment with me. It seems the authorization lists the Los Angeles address and Dr. Eckardt works out of the Santa Monica address. Nothing seems to go smoothly, at all! Mary from Dr. Newman's office works her magic again and gets the ball rolling.
Wednesday, April 8, 2009
Visit With Dr. Newman
Scott and I saw Dr. Newman today. He explains that the tumors are deep within the muscle tissue. I asked him to clarify if they had reached any organs or my spine. He said NO! Sigh of relief! He also thinks they need to be taken out again. He and Mary work the phones to get my authorization approved for Dr. Eckardt at UCLA. The authorization was approved yesterday but not for Dr. Eckardt. Twenty minutes later, it is done. I will see Dr. Eckardt.
Mary and Dr. Newman are awesome!
Mary and Dr. Newman are awesome!
Tuesday, April 7, 2009
What's the Hold Up?
I put a call into Dr. Z's office, he is out for 2 weeks. The authorization can take up to 10 days because it was submitted as a routine authorization. Dr. Z said it would take 48-72 hours. There had to be a mistake. After several calls I find out only Dr. Z can change the status. I didn't really have the patience to sit and wait.
So I called Mary from Dr. Newman's office. She was an angel and stepped in and made it happen. She also made an appointment for me to see Dr. Newman and he could explain exactly what the MRI showed. He had ordered a copy of the report.
So I called Mary from Dr. Newman's office. She was an angel and stepped in and made it happen. She also made an appointment for me to see Dr. Newman and he could explain exactly what the MRI showed. He had ordered a copy of the report.
Friday, April 3, 2009
2:30 PM Dr. Z Calls
Just after picking up Justin from school, Dr. Z called. He heard the kids all in the background and asked if it was a good time to talk. I lied and said yes. He continued, your MRI came back with a questionable area. You will need surgery again. He had already called Dr. Newman and they collectively decided that I needed to go see an expert at UCLA. My mind has a great ability to protect my emotions and after too much, it just shuts down. I couldn't think. I just wanted to fall apart! I called Scott, he had come home early from work that day. He was home when I pulled in the drive way.
Scott's first question was, where is it this time? Why hadn't I thought to ask that? I don't think I could handle the answer at that moment. I called Dr. Z back and he would only say same area but deeper. Naturally we think it is either at my spine or my intestines. The previous surgeries were already there. Deeper had to mean that they had reached those places.
Referrals are submitted and we wait.
Scott's first question was, where is it this time? Why hadn't I thought to ask that? I don't think I could handle the answer at that moment. I called Dr. Z back and he would only say same area but deeper. Naturally we think it is either at my spine or my intestines. The previous surgeries were already there. Deeper had to mean that they had reached those places.
Referrals are submitted and we wait.
Radiation Treatment Planning Visit
I went to see Dr. Z today. This visit was to do a brief treatment planning CT scan. They made the markings on my back where they would deliver the radiation. The CT scan images would be sent to the radiation department for Dr. Z to map out exactly where the radiation would be delivered. Once they were done with this they would call me in for a simulation appointment.
On the way out I asked the tech about my MRI results. I indicated that I had not heard anything about them and I was very anxious because I didn't have a good feeling about it. He said if I hadn't heard anything then not to worry. They always call when something shows up.
Scott and I went to breakfast and rationalized that they wouldn't have gone through the charade of the treatment planning scan and the money wasted if the MRI turned up something, right? I was coming to terms with radiation and what it meant for out family. We had hopes this was the answer to ending this cycle of growths and we could return to normal life.
We had also decided not to tell the kids anything because I couldn't quite get through a sentence about it without crying and I wanted to be able to tell them, especially Justin exactly what it was like. It was truly no big deal, but I needed to believe that also.
On the way out I asked the tech about my MRI results. I indicated that I had not heard anything about them and I was very anxious because I didn't have a good feeling about it. He said if I hadn't heard anything then not to worry. They always call when something shows up.
Scott and I went to breakfast and rationalized that they wouldn't have gone through the charade of the treatment planning scan and the money wasted if the MRI turned up something, right? I was coming to terms with radiation and what it meant for out family. We had hopes this was the answer to ending this cycle of growths and we could return to normal life.
We had also decided not to tell the kids anything because I couldn't quite get through a sentence about it without crying and I wanted to be able to tell them, especially Justin exactly what it was like. It was truly no big deal, but I needed to believe that also.
Thursday, March 26, 2009
Abdomenal MRI With and Without Contrast
I went for the MRI that Dr. Z wanted today. I didn't have a good feeling about the way that it went. They didn't give me any information. So I sat there holding my breath throughout it section wondering why they were checking that area. The tumors had always been deep but they were still in the back area. Half way through the exam they pulled me out of the tube and injected me with something. I had no idea they were going to do this. When I asked what they were doing they said it would help them to see the tumors better....tumors? He said, oh I mean if there are any tumors present. Nice cover up! I left in tears. I never leave that place with good news, never!!
Tuesday, March 3, 2009
Dr. Z, Radiation Oncologist
I saw Dr. Z and his staff today for a radiation consult. They explain to me their concern with the wear daily radiation and having 5 small children will have on my body. I will be starting a 36-37 treatment plan. First up, Dr. Z would like for me to have an MRI of the abdomenal area before we get started.
Thursday, February 26, 2009
The Oncologist
I saw Dr. Malik today. He takes an extensive history and examines my back. He feels this is related to my family history of colon cancer. He ordered several blood tests and explains these types of tumors typically originate in the abdominal area, and mine are certainly headed in that direction. They are a class of sarcomas (this is why everyone was so sure they were soft tissue sarcoma tumors) and radiation is something he thinks will help. He submits a referral to see a radiation oncologist.
Thursday, February 19, 2009
Informing My Other Doctors
I visit my primary to update him on my surgery recovery and the next steps. He would like for me to see an oncologist for my options. I am approved to go back to the oncologist I saw before the first surgery. I make an appointment to see Dr. Malik
Thursday, February 12, 2009
Monthly Visit
I have my monthly visit with Dr. Newman. He wants to wait on the CT scan because I have had so many in the past few months. They might confuse scar tissue with a mass. We will look at our options in a month. Examines my back and feels nothing noticiable.
Thursday, January 15, 2009
Final Staples Are Removed
The last two weeks, only a few staples were removed. The final staples were removed today. About 1/3 of my first scar is a keloid scar and the enitre second scar is a keloid scar. Most of the feeling from surgery number 1 has not returned. I think this has helped with pain management externally but internally I have been sore over the last month.
Dr. Newman will monitor me monthly for any lumps or bumps. We will do a baseline CT to monitor any different growth in the surgical site. I go back in a month.
Dr. Newman will monitor me monthly for any lumps or bumps. We will do a baseline CT to monitor any different growth in the surgical site. I go back in a month.
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