So cool! I want!
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
December 3, 2010
Woman to Give Birth on First Transplanted Ovary - Health News | Current Health News | Medical News - FOXNews.com
Woman to Give Birth on First Transplanted Ovary - Health News | Current Health News | Medical News - FOXNews.com
December 2, 2010
Thanks
Just wanted to give a huge thanks to all of those who were so helpful during my surgery.
My roommates: Melanie, Paul, Talisha, Jim, Jasonelle, Paz --> you guys were awesome. Thanks for being there for my recovery. I'm apologize for anything said while I was high on IV Benadryl. I'm pretty sure I even apologized while drugged ;) Melanie thank you for being on the phone with my parents and giving them updates during surgery and for giving me a ride so early in the morning. I'm so appreciative of that and my parents are too.
Shawn: You were an amazing nurse to me. You were there the whole time helping me walk, keeping me company, measuring my pee, making sure that I didn't overdose on narcotics... And thank you so much for reassuring my parents and giving them updates. This definitely could be a promising career for you.
Other friends: Thanks for the support and well-wishes all around. I'm grateful to have so many caring people in my life. Laura and Justin- I haven't seen you in forever and I love that you were able to stop by. I also love the random emails I get from friends I haven't talked to in ages- it's uplifting.
Family: Mom & Dad you worry too much but I feel loved. Ashley, you are so positive about all of this which is so needed. Mom & Dad need that level head. Other fam, I know we haven't connected and kept in touch but I really appreciate the love even from so far away.
Dr. Swisher- you did an amazing job and know your shit! Thanks for managing my unique case and keeping up to date with the new research- it was so reassuring to see you at that Ovarian Cancer Symposium!
Laura the resident: You were the one who told me the results of my first surgery and gave me the news exactly how I would have done it. I love that you were on my case 2 years later! Also I'm convinced that you did my surgery this time. Attendings will never tell you that, but I bet I'm a practice case. No complications or complaints so far...
I highly recommend the University of Washington for any surgery- I guess last year it was in the top 5 or so in oncology.
Thanks again everyone for the positive vibes!! You all are definitely part of the reason I'm still going strong!!
My roommates: Melanie, Paul, Talisha, Jim, Jasonelle, Paz --> you guys were awesome. Thanks for being there for my recovery. I'm apologize for anything said while I was high on IV Benadryl. I'm pretty sure I even apologized while drugged ;) Melanie thank you for being on the phone with my parents and giving them updates during surgery and for giving me a ride so early in the morning. I'm so appreciative of that and my parents are too.
Shawn: You were an amazing nurse to me. You were there the whole time helping me walk, keeping me company, measuring my pee, making sure that I didn't overdose on narcotics... And thank you so much for reassuring my parents and giving them updates. This definitely could be a promising career for you.
Other friends: Thanks for the support and well-wishes all around. I'm grateful to have so many caring people in my life. Laura and Justin- I haven't seen you in forever and I love that you were able to stop by. I also love the random emails I get from friends I haven't talked to in ages- it's uplifting.
Family: Mom & Dad you worry too much but I feel loved. Ashley, you are so positive about all of this which is so needed. Mom & Dad need that level head. Other fam, I know we haven't connected and kept in touch but I really appreciate the love even from so far away.
Dr. Swisher- you did an amazing job and know your shit! Thanks for managing my unique case and keeping up to date with the new research- it was so reassuring to see you at that Ovarian Cancer Symposium!
Laura the resident: You were the one who told me the results of my first surgery and gave me the news exactly how I would have done it. I love that you were on my case 2 years later! Also I'm convinced that you did my surgery this time. Attendings will never tell you that, but I bet I'm a practice case. No complications or complaints so far...
I highly recommend the University of Washington for any surgery- I guess last year it was in the top 5 or so in oncology.
Thanks again everyone for the positive vibes!! You all are definitely part of the reason I'm still going strong!!
September 25, 2009
Leave of Absense
I think this will be the second to last post for awhile unless something new comes up. Everything seems to be going ok on the cancer front. I have an appointment with my gyn onc on Monday so I will update about that. I am so happy to be done with everything and my big sunburn on my back is finally starting to heal, although now it looks like some kind of fungus because it's lighter than the rest of the skin on my tan back. I also got my port removed a couple of weeks ago so I am most excited about that. No more alien probe/tumor on my chest!
Other than that I have come to another major roadblock in my life. After talking with the nursing program director and dean (or yelling rather), it turns out that I won't be returning to school until spring quarter which is in March. Fuck that. I was told that I would be able to finish up with independent study, doing clinicals this fall and winter and then being done by March. The director instead tells me now that they have no one to teach the one-hour seminar included with the course, and so now I have to reenter the program with the upcoming cohort at the same time I took time off. They said it was "for the best" so I could allow myself to heal fully. Honestly, this is the dumbest thing I have heard in awhile because taking 6 months off IS NOT good for my education at this point. I need continuous clinical experience- with a big break like this I am likely to be extremely behind. I'm scared that I will be so behind that I will again have to repeat the course. WTF?!? Fuck Seattle U. I'm so done with their fucking program.
Sucks cause now I have no job and no school, meaning that my loans go into repayment mode soon. And I lose all the loan money I have been using to live on. Of course I told this to my dean and they apparently don't give a shit.
So now I am figuring out what to do with myself. Yesterday I returned from a 2 week visit to the Midwest to see my family and friends. Now in a week I am going on a road trip along the west coast from Seattle down to L.A. with a good friend. Should be another 2 weeks. Like I have anything else to do... I have been looking for jobs but so far have been denied new graduate opportunities because there are only 1-2 openings at the major hospitals around Seattle. I have no experience for the rest of the nursing jobs, plus no one is willing to hire an RN who will just quit as soon as she finds a nurse practitioner position. So frustrating.
Well that's all for now. Hope everyone out there is well.
Other than that I have come to another major roadblock in my life. After talking with the nursing program director and dean (or yelling rather), it turns out that I won't be returning to school until spring quarter which is in March. Fuck that. I was told that I would be able to finish up with independent study, doing clinicals this fall and winter and then being done by March. The director instead tells me now that they have no one to teach the one-hour seminar included with the course, and so now I have to reenter the program with the upcoming cohort at the same time I took time off. They said it was "for the best" so I could allow myself to heal fully. Honestly, this is the dumbest thing I have heard in awhile because taking 6 months off IS NOT good for my education at this point. I need continuous clinical experience- with a big break like this I am likely to be extremely behind. I'm scared that I will be so behind that I will again have to repeat the course. WTF?!? Fuck Seattle U. I'm so done with their fucking program.
Sucks cause now I have no job and no school, meaning that my loans go into repayment mode soon. And I lose all the loan money I have been using to live on. Of course I told this to my dean and they apparently don't give a shit.
So now I am figuring out what to do with myself. Yesterday I returned from a 2 week visit to the Midwest to see my family and friends. Now in a week I am going on a road trip along the west coast from Seattle down to L.A. with a good friend. Should be another 2 weeks. Like I have anything else to do... I have been looking for jobs but so far have been denied new graduate opportunities because there are only 1-2 openings at the major hospitals around Seattle. I have no experience for the rest of the nursing jobs, plus no one is willing to hire an RN who will just quit as soon as she finds a nurse practitioner position. So frustrating.
Well that's all for now. Hope everyone out there is well.
August 18, 2009
Radiation sucks!
Not much to report. Radiation sucks. I'm so tired that I can do about one errand a day, and that errand is to drive to radiation. I don't have any diarrhea, but I have been nauseous a few times in the last week. Kinda randomly. And I am starting to get really bad chemo brain. I'm forgetful and am having a hard time bring up words to mind when speaking. Arghhhhhhhhhhh over a week to go...
I see the radiation oncologist once a week to go over my symptoms and the progress of the treatments. At our last meeting he recommended that I do an extra 3 treatments aimed at the area over my para-aortic nodes where the highest tumor was found. I was like, whatever, what's 3 extra days going to matter? Well we'll see now cause I'm getting really tired of this.
My doctor hadn't order a CA-125 for me yet so I demanded to get it drawn last week. I feel like they have totally forgotten about me- I hadn't had the test in almost 3 month! But all is good, I got it back and it was 9! I think that is my second lowest number yet. And it had better be cause I'm not doing this double whammy preventative chemo-radiation combo for nothing!
Other than that... My sis came to visit last week. We spend a good portion of the time napping or watching movies on my bed. She was just as tired as me! We did go to Karaoke and a fun Madonna-Elvis party though. She dressed up like Like-A-Virgin Madonna in a white corset, and I did the whole cone-boob thing. They were rocking costumes! Pictures to come...
I see the radiation oncologist once a week to go over my symptoms and the progress of the treatments. At our last meeting he recommended that I do an extra 3 treatments aimed at the area over my para-aortic nodes where the highest tumor was found. I was like, whatever, what's 3 extra days going to matter? Well we'll see now cause I'm getting really tired of this.
My doctor hadn't order a CA-125 for me yet so I demanded to get it drawn last week. I feel like they have totally forgotten about me- I hadn't had the test in almost 3 month! But all is good, I got it back and it was 9! I think that is my second lowest number yet. And it had better be cause I'm not doing this double whammy preventative chemo-radiation combo for nothing!
Other than that... My sis came to visit last week. We spend a good portion of the time napping or watching movies on my bed. She was just as tired as me! We did go to Karaoke and a fun Madonna-Elvis party though. She dressed up like Like-A-Virgin Madonna in a white corset, and I did the whole cone-boob thing. They were rocking costumes! Pictures to come...
April 2, 2009
March 31, 2009
Spring Break unexcitement
I haven't written in awhile because I am have been back in Urbana, Illinois for my spring break. The weeks before finals I had a random idea to spend 5 days in Hawaii. Tickets were cheap, but I had never been and had no idea where to look for a place. I put it off and by the beginning of finals week they had gone way up. I would have gone but it was stressful just finding a place to stay- I had no idea what island to go to and what hotels/hostels were good. But then my mom got sick so I changed my plans and tried my hardest to get a flight last Monday. No luck- I tried to get charity fares but there was nothing for a week. What's the point of that?!? Damn spring break. I finally forked out 600 bucks to fly out on Wednesday. I missed my first flight which made me miss the last flight to Urbana and so I had to take the bus home. Ugh. Sooo boring. But I finally made it home. My sis was up with her bf and he had shaved his head for me! My sis was pissed but her looked good. Anyways, it was nice to see my sis and all but I was completely focused on my mom...
So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.
The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.
The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!
Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.
So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...
So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.
I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!
Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!
Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.
Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).
Amber
So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.
The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.
The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!
Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.
So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...
So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.
I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!
Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!
Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.
Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).
Amber
March 2, 2009
From the beginning: the long story
Plus.... I can tell how this all happened once and only once...
So here's the story:
Back in late November I started having aching low back pain and pelvic pressure when I walked. I also had some urinary symptoms: urgency, frequency, etc. At the time, we were studying women's health in school and had actually just done a case study on pelvic inflammatory disease. So immediately I was like BAM! that's what I have. But then I was busy and put off making an appointment that week. One week later, the pain was gone and things were normal again. But then I had a new symptom- my right hip hurt- a deep, achy pain that felt like it was coming from my bones. And it would be constant whether I got up and walked around or was sitting. Also, even though I wasn't particularly stressed about school, I had lost my appetite and starting feeling full earlier than expect. And the weight loss began...I was suddenly the weight that I had been in high school (when on the gymnastics team) So basically, what finally prompted me to go to the doctor were the red flags of cancer: bone pain with rest, unexplained weight loss, and the fact that I used to LOVE to eat and snacked all day. I remember sitting there on the futon at this time, doing my homework and making observations/jokes to my roommates that maybe I had cancer. We also joked that I had a tapeworm that I needed to keep in line. I knew that I needed to go to the doctor but of course this happened: with the move into the new house I lost track of some bills and ended up not sending in my December health insurance premium. How fucking ironic. I never had any health problems before. Now my coverage was inconveniently suspended in the very month that something was actually wrong with me.
Anyways, so on my birthday (Dec 10) I marched into Seattle's Univ. FREE health clinic to check out what I initially thought was an infection. My NP there was awesome and listened to my concerns. I was feeling reassured that I just had a bad infection until she did the speculum exam. Damn that thing hurt! And it never ever had hurt before. It was this point that I knew something was wrong and I think I started crying right there. This marked the beginning of almost 2 months of agony and anxiety about what could be going on with me. She then told me that she found a 8cm mass in my ovary and that she was going to do some blood tests and send me to get an ultrasound to see if it was a simple cyst. So I left feeling somewhat ok that it could be a cyst, but the thought of cancer never left my mind. She called a few days later with results that my platelet counts were high. This freaked me out as well. Having just finished up a course on women's health, I had two gyno books at my disposal, as well as lab interpretation textbooks. Really high platelets= possible sign of bone marrow failure (and from cancer).
All of this was awful timing because I was about to go home for Xmas break. But I wanted to get the US first. So I paid for the damn thing myself and got it right before I left. That was a scary procedure as well because the technician would not let me even peek at the monitor. Very frustrating for a medical student. She spend so much time in there that I thought I had other masses. I think i was feeling a little hysterical at this point because I requested some valium from the school NP.
Well a few long days late I got the results of the US: it was a 8cm solid mass with some cystic components that may or may not be located in the ovary. Solid= bad= not cyst. There were no other malignant-like findings, but with the size and consistency the reporter could not rule out malignancy. Those were the words I took home with me for my vacation "can not rule out malignancy". As pissed as they probably are about it now, I didn't tell either my parents or my sister what was going on. I just wanted to enjoy my Xmas. Plus everyone was already so stressed out- i knew that this would make it worse, even if I meant that I had to hide my anxiety and need to tell them. I did tell some good friends at home and that helped to calm me down. I remember leaving St Louis and Urbana feeling pretty good- I had had a great time hanging out with old friends and family- probably one of the best times I've had visiting. I did sleep a lot when I was there though. I think I woke up at 2pm every afternoon for those 2 weeks. My parents did manage to fatten me up a little bit too. My hip still hurt a lot and I know my parents wondered what was going on with that.
At home I was desperate to get in to see the gyno but because of the massive snow storm and Seattle's mismanagement the clinic hadn't been open all week. I was finally able to get an appointment with my PCP who ordered an MRI, and the gyno doc. I had the MRI first which was one of the most boring things I've ever experienced. You lay down on a table and the magnets rotate around you with blaring noise. It took at least an hour and none of the music stations they had for you to listen to were working. After the MRI I picked up the films and took them to meet the gyno for the first time. She did an exam and looked at the MRI and decided that laparascopic surgery was in need to remove the mass. She originally thought that the mass was uterine in origin and we had a long discussion about how much it would suck to have to have C-sections every time I got pregnant. I had always had this desire to go natural childbirth- with no epidural just like my mom did. Having a C-section would ruin that whole experience for me... Dr Gyno changed her mind when she got the results of my CA-125 blood test. The CA-125 is an protein found in ovarian cancer cells. The usual values are from 0-35. Well mine was 420. In pre-menopausal women it is not reliable as a diagnostic or screening test for ovarian cancer, but 80% of menopausal women with high values have stage II, III, and IV ovarian cancer. There are other causes for CA-125 elevations, but the values in these causes are usually much less than my 420. So basically another test that could not rule out malignancy.
After thinking about the MRI findings, CA-125 test and the possibility of cancer, I started wondering if laparoscopic surgery wasn't the way to go. With a lap surgery, my max recovery time could be a week and so I would miss much less class and clinical. But, if they did a lap and discovered that the mass was malignant, then they would have close (to reduce risk of releasing more cells into the body) and reschedule another abdominal surgery. Rather than go though all this surgery during a busy quarter I decided to consult with UW Medical and a gyn-onc surgeon. After meeting with me, she immediately told me that she could not remove the mass laparoscopically and that the recovery time would be 4-6 wks. I was devastated at this time because that would be a ton of missed school and recovery. But I wanted that tumor out, so I schedule my surgery for January 30th at the UWMH. She told me that there was a 50-50 chance that the mass could be cancerous at this point, but was thankful that they would be able to remove it early. She also came in with forms for me to sign about what should happen if they do find malignancy. The standard in ovarian cancer is to take the other ovary, unless the woman is of childbearing age. I remember signing the form that it would be ok to take the other ovary if it would be medically unsafe or if the cancer was particularly aggressive. Then I almost signed my uterus away, but my sister had told me that I could have some of her eggs.
So after step after step of malignancy not being ruled out- I finally geared up to call my parents. I had wanted to know the definitive diagnose before i told them. but i realize that this could no longer be possible without surgery, and they need to at least know that I was getting surgery. So I called them and it was awful- lots of crying. They made arrangements to fly to Seattle for my 5 day stay. I was upset because the one time I can get them to stop overworking themselves and take a vacation, it has to be to visit their sick daughter and her abdominal incision. Too bad cause I wanted to show them around and instead was in bed for 5 days.
Well I prepared for surgery by letting my professors and clinical sites know- weird because I didn't really know the outcome of when I would be back- just that recovery maybe take up to 4 wks. The night before I had to do a bowel prep which consisted of drinking 2 entire bottles of milk of magnesia. Ughhhhh. my ass hurt after that one. I spent more time on the toilet than doing anything else the most of the night. The morning of surgery I packed my backs with lots to do knowing that i would have a 5 day stay. The UW hospital was amazing, and I was totally impressed with the care. I met with the anesthesiologist who prepped me for surgery, and my surgeon who wanted to run through the plan. She said it would take about 3 hours max, and that she didn't think there would be any need to take the other ovary. Next thing I knew, I was being wheeled out to surgery and then what felt like moments late- wheeled back into the recovery room.
All I remember from the recovery room is whispering. People talking about me with concerned voices. The results of the surgery. At some point I asked for an epidural. I remember sitting against the side of the bed listening to a new resident get instruction from the doctor on how to place the catheter. It was taking way too long. From where I was I had just well assumed that she had no idea what she was doing. I remember crying here and everyone kept asking me "does it hurt?" No it didn't hurt- I am just scared because you are taking an hour to stick a massive needle in my spine and I am overhearing evidence that this may be your first placement. Finally when they got it in- I looked down at my belly and saw that the incision was twice the size that the doctor had anticipated. This was my clue that something had gone wrong. It also explained all the whispering from the nurses- I knew that she had found cancer.
A super nice resident came in later and gave me the most direct explanation of what they had found in surgery: The ovarian mass was actually 10cm, solid, indeed located in the ovary, and had pathology that showed it was malignant in nature. Therefore, the surgeon had decided to take my other ovary. Biopsies from the abdominal lining and adjacent structures were negative. However, just when they were about to close the surgeon was surprised to find a 2 cm metastasis to my para-aortic nodes. Apparently rather than spreading to adjacent tissues, the metastases spread through the blood stream and wrapped around the vena cava (makes me wonder if this would explain why I would get so light-headed when I stood up). Fortunately, the surgeon was able to remove the node and they were able to close without complications. The resident explained this all so matter-of-factly, yet had so much concern in her eyes when she told me that they took the other ovary. I asked her what my staging was and she said Stage: III (C). Basically in ovarian cancer that means that it has spread beyond one or both ovaries into the abdominal cavity or adjacent lymph nodes.
So after all that time my instincts had been right. It is so weird now- all that anxiety I had been feeling was suddenly released. I can accept cancer- apparently I just can't accept the unknown. The watching and waiting and not knowing was what was causing me so much distress. Now I actually feel a little more positive and much more relaxed.
So here's the story:
Back in late November I started having aching low back pain and pelvic pressure when I walked. I also had some urinary symptoms: urgency, frequency, etc. At the time, we were studying women's health in school and had actually just done a case study on pelvic inflammatory disease. So immediately I was like BAM! that's what I have. But then I was busy and put off making an appointment that week. One week later, the pain was gone and things were normal again. But then I had a new symptom- my right hip hurt- a deep, achy pain that felt like it was coming from my bones. And it would be constant whether I got up and walked around or was sitting. Also, even though I wasn't particularly stressed about school, I had lost my appetite and starting feeling full earlier than expect. And the weight loss began...I was suddenly the weight that I had been in high school (when on the gymnastics team) So basically, what finally prompted me to go to the doctor were the red flags of cancer: bone pain with rest, unexplained weight loss, and the fact that I used to LOVE to eat and snacked all day. I remember sitting there on the futon at this time, doing my homework and making observations/jokes to my roommates that maybe I had cancer. We also joked that I had a tapeworm that I needed to keep in line. I knew that I needed to go to the doctor but of course this happened: with the move into the new house I lost track of some bills and ended up not sending in my December health insurance premium. How fucking ironic. I never had any health problems before. Now my coverage was inconveniently suspended in the very month that something was actually wrong with me.
Anyways, so on my birthday (Dec 10) I marched into Seattle's Univ. FREE health clinic to check out what I initially thought was an infection. My NP there was awesome and listened to my concerns. I was feeling reassured that I just had a bad infection until she did the speculum exam. Damn that thing hurt! And it never ever had hurt before. It was this point that I knew something was wrong and I think I started crying right there. This marked the beginning of almost 2 months of agony and anxiety about what could be going on with me. She then told me that she found a 8cm mass in my ovary and that she was going to do some blood tests and send me to get an ultrasound to see if it was a simple cyst. So I left feeling somewhat ok that it could be a cyst, but the thought of cancer never left my mind. She called a few days later with results that my platelet counts were high. This freaked me out as well. Having just finished up a course on women's health, I had two gyno books at my disposal, as well as lab interpretation textbooks. Really high platelets= possible sign of bone marrow failure (and from cancer).
All of this was awful timing because I was about to go home for Xmas break. But I wanted to get the US first. So I paid for the damn thing myself and got it right before I left. That was a scary procedure as well because the technician would not let me even peek at the monitor. Very frustrating for a medical student. She spend so much time in there that I thought I had other masses. I think i was feeling a little hysterical at this point because I requested some valium from the school NP.
Well a few long days late I got the results of the US: it was a 8cm solid mass with some cystic components that may or may not be located in the ovary. Solid= bad= not cyst. There were no other malignant-like findings, but with the size and consistency the reporter could not rule out malignancy. Those were the words I took home with me for my vacation "can not rule out malignancy". As pissed as they probably are about it now, I didn't tell either my parents or my sister what was going on. I just wanted to enjoy my Xmas. Plus everyone was already so stressed out- i knew that this would make it worse, even if I meant that I had to hide my anxiety and need to tell them. I did tell some good friends at home and that helped to calm me down. I remember leaving St Louis and Urbana feeling pretty good- I had had a great time hanging out with old friends and family- probably one of the best times I've had visiting. I did sleep a lot when I was there though. I think I woke up at 2pm every afternoon for those 2 weeks. My parents did manage to fatten me up a little bit too. My hip still hurt a lot and I know my parents wondered what was going on with that.
At home I was desperate to get in to see the gyno but because of the massive snow storm and Seattle's mismanagement the clinic hadn't been open all week. I was finally able to get an appointment with my PCP who ordered an MRI, and the gyno doc. I had the MRI first which was one of the most boring things I've ever experienced. You lay down on a table and the magnets rotate around you with blaring noise. It took at least an hour and none of the music stations they had for you to listen to were working. After the MRI I picked up the films and took them to meet the gyno for the first time. She did an exam and looked at the MRI and decided that laparascopic surgery was in need to remove the mass. She originally thought that the mass was uterine in origin and we had a long discussion about how much it would suck to have to have C-sections every time I got pregnant. I had always had this desire to go natural childbirth- with no epidural just like my mom did. Having a C-section would ruin that whole experience for me... Dr Gyno changed her mind when she got the results of my CA-125 blood test. The CA-125 is an protein found in ovarian cancer cells. The usual values are from 0-35. Well mine was 420. In pre-menopausal women it is not reliable as a diagnostic or screening test for ovarian cancer, but 80% of menopausal women with high values have stage II, III, and IV ovarian cancer. There are other causes for CA-125 elevations, but the values in these causes are usually much less than my 420. So basically another test that could not rule out malignancy.
After thinking about the MRI findings, CA-125 test and the possibility of cancer, I started wondering if laparoscopic surgery wasn't the way to go. With a lap surgery, my max recovery time could be a week and so I would miss much less class and clinical. But, if they did a lap and discovered that the mass was malignant, then they would have close (to reduce risk of releasing more cells into the body) and reschedule another abdominal surgery. Rather than go though all this surgery during a busy quarter I decided to consult with UW Medical and a gyn-onc surgeon. After meeting with me, she immediately told me that she could not remove the mass laparoscopically and that the recovery time would be 4-6 wks. I was devastated at this time because that would be a ton of missed school and recovery. But I wanted that tumor out, so I schedule my surgery for January 30th at the UWMH. She told me that there was a 50-50 chance that the mass could be cancerous at this point, but was thankful that they would be able to remove it early. She also came in with forms for me to sign about what should happen if they do find malignancy. The standard in ovarian cancer is to take the other ovary, unless the woman is of childbearing age. I remember signing the form that it would be ok to take the other ovary if it would be medically unsafe or if the cancer was particularly aggressive. Then I almost signed my uterus away, but my sister had told me that I could have some of her eggs.
So after step after step of malignancy not being ruled out- I finally geared up to call my parents. I had wanted to know the definitive diagnose before i told them. but i realize that this could no longer be possible without surgery, and they need to at least know that I was getting surgery. So I called them and it was awful- lots of crying. They made arrangements to fly to Seattle for my 5 day stay. I was upset because the one time I can get them to stop overworking themselves and take a vacation, it has to be to visit their sick daughter and her abdominal incision. Too bad cause I wanted to show them around and instead was in bed for 5 days.
Well I prepared for surgery by letting my professors and clinical sites know- weird because I didn't really know the outcome of when I would be back- just that recovery maybe take up to 4 wks. The night before I had to do a bowel prep which consisted of drinking 2 entire bottles of milk of magnesia. Ughhhhh. my ass hurt after that one. I spent more time on the toilet than doing anything else the most of the night. The morning of surgery I packed my backs with lots to do knowing that i would have a 5 day stay. The UW hospital was amazing, and I was totally impressed with the care. I met with the anesthesiologist who prepped me for surgery, and my surgeon who wanted to run through the plan. She said it would take about 3 hours max, and that she didn't think there would be any need to take the other ovary. Next thing I knew, I was being wheeled out to surgery and then what felt like moments late- wheeled back into the recovery room.
All I remember from the recovery room is whispering. People talking about me with concerned voices. The results of the surgery. At some point I asked for an epidural. I remember sitting against the side of the bed listening to a new resident get instruction from the doctor on how to place the catheter. It was taking way too long. From where I was I had just well assumed that she had no idea what she was doing. I remember crying here and everyone kept asking me "does it hurt?" No it didn't hurt- I am just scared because you are taking an hour to stick a massive needle in my spine and I am overhearing evidence that this may be your first placement. Finally when they got it in- I looked down at my belly and saw that the incision was twice the size that the doctor had anticipated. This was my clue that something had gone wrong. It also explained all the whispering from the nurses- I knew that she had found cancer.
A super nice resident came in later and gave me the most direct explanation of what they had found in surgery: The ovarian mass was actually 10cm, solid, indeed located in the ovary, and had pathology that showed it was malignant in nature. Therefore, the surgeon had decided to take my other ovary. Biopsies from the abdominal lining and adjacent structures were negative. However, just when they were about to close the surgeon was surprised to find a 2 cm metastasis to my para-aortic nodes. Apparently rather than spreading to adjacent tissues, the metastases spread through the blood stream and wrapped around the vena cava (makes me wonder if this would explain why I would get so light-headed when I stood up). Fortunately, the surgeon was able to remove the node and they were able to close without complications. The resident explained this all so matter-of-factly, yet had so much concern in her eyes when she told me that they took the other ovary. I asked her what my staging was and she said Stage: III (C). Basically in ovarian cancer that means that it has spread beyond one or both ovaries into the abdominal cavity or adjacent lymph nodes.
So after all that time my instincts had been right. It is so weird now- all that anxiety I had been feeling was suddenly released. I can accept cancer- apparently I just can't accept the unknown. The watching and waiting and not knowing was what was causing me so much distress. Now I actually feel a little more positive and much more relaxed.
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