Uncertainty about a diagnosis causes more anxiety and can be more stressful than actually knowing that you have a serious illness, researchers reported here at the 2010 annual meeting of the Radiological Society of North America
duh
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
December 3, 2010
December 2, 2010
Hope
Many things have inspired me to share my thoughts on this...
I know the statistics are bad for this cancer. But who cares. My case is unique. So far many things about my case have been unpredictable. This is why there is hope:
1.) Staging: My dad just told me that my gyn onc would have originally classified my cancer after the 1st surgery as stage II because of the weird spread pattern. It spread NO WHERE else in my pelvic region or abdomen except a couple of nodes and my ovary. The only reason it was staged at IIIc is because of that tumor in the paraaortic lymph node near my kidneys. It wasn't even in my other ovary. This is highly unusual for ovarian cancer.
2.) Age: I'm pretty young. Pre-menopausal at diagnosis of ovarian cancer is very very rare. More common for clear cell type, but still.... I found a couple studies that the outcomes for those diagnosed young are much much better than in older women
3.) Health: No one could have been more physically healthy. I'm muscular (maybe losing a little of that), rarely get colds or recover quickly, and have no major diagnoses. My only issues are chronic back pain, insomnia, and bipolar- which I believe has made me a much stronger person because I have been through tough times so many times before.
4,) Gymnastics: I was a gymnast which is probably the toughest sport out there. I dedicated years of my life working 4 hrs a night conditioning my body and dealing with very very scary tricks. My back, wrists, shins, and ankles hurt everyday but I would get up and tumble or vault on that hard floor every practice. I would rip huge blisters on my palms where later I could barely wash my hair because of the pain- yet I still got back on that bar to finish my routines. I often came home and spent the night with two or three ice packs on various body parts. Cancer is no big deal after beating up my body for the awesomest sport in the world!!!
5.) Recovery: I am a queen at recovery. Yes fatigue is killing me and my sleep schedule is screwed up, but I had major abdominal surgery and was eating a normal diet, ditched the catheter, and walking around 24 hours later. Too bad I had to switch to oral meds in 24 hours too :( I should have stayed longer and took advantage of the decent meals and pampering. I could do without having to sleep with my arm out for the nurses to take my vitals at all hours of the night. And dragging an IV pole around to the bathroom or when taking a walk... Or having to measure my pee volume. I just started doing everything myself and beating the nurses to the punch. I shocked them when they came into the room and I was already walking around the room
6.) Support: see following blog!
So I hope all this helps those Negative Nancies (thanks Ashley for that silly phrase)
I know the statistics are bad for this cancer. But who cares. My case is unique. So far many things about my case have been unpredictable. This is why there is hope:
1.) Staging: My dad just told me that my gyn onc would have originally classified my cancer after the 1st surgery as stage II because of the weird spread pattern. It spread NO WHERE else in my pelvic region or abdomen except a couple of nodes and my ovary. The only reason it was staged at IIIc is because of that tumor in the paraaortic lymph node near my kidneys. It wasn't even in my other ovary. This is highly unusual for ovarian cancer.
2.) Age: I'm pretty young. Pre-menopausal at diagnosis of ovarian cancer is very very rare. More common for clear cell type, but still.... I found a couple studies that the outcomes for those diagnosed young are much much better than in older women
3.) Health: No one could have been more physically healthy. I'm muscular (maybe losing a little of that), rarely get colds or recover quickly, and have no major diagnoses. My only issues are chronic back pain, insomnia, and bipolar- which I believe has made me a much stronger person because I have been through tough times so many times before.
4,) Gymnastics: I was a gymnast which is probably the toughest sport out there. I dedicated years of my life working 4 hrs a night conditioning my body and dealing with very very scary tricks. My back, wrists, shins, and ankles hurt everyday but I would get up and tumble or vault on that hard floor every practice. I would rip huge blisters on my palms where later I could barely wash my hair because of the pain- yet I still got back on that bar to finish my routines. I often came home and spent the night with two or three ice packs on various body parts. Cancer is no big deal after beating up my body for the awesomest sport in the world!!!
5.) Recovery: I am a queen at recovery. Yes fatigue is killing me and my sleep schedule is screwed up, but I had major abdominal surgery and was eating a normal diet, ditched the catheter, and walking around 24 hours later. Too bad I had to switch to oral meds in 24 hours too :( I should have stayed longer and took advantage of the decent meals and pampering. I could do without having to sleep with my arm out for the nurses to take my vitals at all hours of the night. And dragging an IV pole around to the bathroom or when taking a walk... Or having to measure my pee volume. I just started doing everything myself and beating the nurses to the punch. I shocked them when they came into the room and I was already walking around the room
6.) Support: see following blog!
So I hope all this helps those Negative Nancies (thanks Ashley for that silly phrase)
November 7, 2010
Plan for Surgery, PET results...
A big sigh of relief. The PET scan made up my mind for me- The cancer is localized, I'm not dying, there is no need to flee or give up on treatments right now. I am actually pretty at ease right now with my medical situation- I may be crazy but the surgery on Wednesday is no big deal to me. YES it's major surgery and I will be out while my doctor carves into me. But I've been through this before. Now I know that there is only one tumor. It doesn't seem to be attached to anything but fat, and therefore pretty easy to remove. The incision will even be right over my old one, and much smaller. Everything seems straight-forward. Now it's just a matter of coordinating. My roomies are going to tale me and be there during to give my parents updates. I'm pretty sure I will be there 3 days again. No big deal.
So now it's time to deal with my other problems. Finances. I can't believe what a mess I am in. I don't think it's ever been so bad. I don't want to complain, but I must comment on how horrible Citibank is right now. I got a bill last month for over $450 for my first loan payment. I called and was like "WTF?" - I just graduated- don't I have a grace period?" Well... apparently you ARE allowed one grace period for the 6 months following departure from school- HOWEVER, I used this time up when I had to take a leave of absence for treatment. Even worse, I also used up 3 months of the only one forbearance allowed on this loan. Because this is a private, living-expense loan, I cannot defer, have additional forbearances, or even change to a graduated-payment plan based on unemployment or financial difficulties- all things which I have been able to do with all of my federal loans. Even with CANCER I still have to repay my loan- $450/month. I called twice and spoke to two supervisors, all who told me sorry, but they couldn't do anything. #$%$^%&%!!!!! WTF? I heard this and basically went off on these people, telling them that they should be ashamed of themselves for even working for such a heartless, shitty company. Not really the customer service reps fault, but STILL!!!
Well I can get a job, right? Hmm. I'm sure you all know how the economy is. I unfortunately have one huge problem getting any old job. I absolutely HAVE TO keep my health insurance. It's based on income- if I make any more than $1100 a month then I lose it. This is equivalent to working for minimum wage, full-time. If I took a job as a barista or worked in retail or something (jobs which under other circumstances I would be working my damnest to get) I would also lose my food stamps- a substantial amount that I depend on. So I would make $1100 a month (which would barely cover rent, utilities, and that absurd Citibank bill) and have NO insurance- owing $$$$ for surgery and future treatments. Is it worth it? NO WAY!
The situation is extremely frustrating- I cannot work as an NP because I haven't taken the test and have been too overwhelmed making life-or-death decisions lately to even study for the test. I can't get an RN job for the life of me because I have no experience. I was pretty sure I could snag one of Planned Parenthood's open positions when I did become certified, but they have filled them since I did my clinical there. Even more depressing right now, I pretty much landed a high school gymnastics coaching team position, but had to turn it down when I found out I needed surgery. I can't spot teenagers after major abdominal surgery.
And my car decided to stop working... the 6-month premium was due... Basically this is what has been on my mind lately. Not the fact that I am having major surgery. Ridiculous, huh?
So now it's time to deal with my other problems. Finances. I can't believe what a mess I am in. I don't think it's ever been so bad. I don't want to complain, but I must comment on how horrible Citibank is right now. I got a bill last month for over $450 for my first loan payment. I called and was like "WTF?" - I just graduated- don't I have a grace period?" Well... apparently you ARE allowed one grace period for the 6 months following departure from school- HOWEVER, I used this time up when I had to take a leave of absence for treatment. Even worse, I also used up 3 months of the only one forbearance allowed on this loan. Because this is a private, living-expense loan, I cannot defer, have additional forbearances, or even change to a graduated-payment plan based on unemployment or financial difficulties- all things which I have been able to do with all of my federal loans. Even with CANCER I still have to repay my loan- $450/month. I called twice and spoke to two supervisors, all who told me sorry, but they couldn't do anything. #$%$^%&%!!!!! WTF? I heard this and basically went off on these people, telling them that they should be ashamed of themselves for even working for such a heartless, shitty company. Not really the customer service reps fault, but STILL!!!
Well I can get a job, right? Hmm. I'm sure you all know how the economy is. I unfortunately have one huge problem getting any old job. I absolutely HAVE TO keep my health insurance. It's based on income- if I make any more than $1100 a month then I lose it. This is equivalent to working for minimum wage, full-time. If I took a job as a barista or worked in retail or something (jobs which under other circumstances I would be working my damnest to get) I would also lose my food stamps- a substantial amount that I depend on. So I would make $1100 a month (which would barely cover rent, utilities, and that absurd Citibank bill) and have NO insurance- owing $$$$ for surgery and future treatments. Is it worth it? NO WAY!
The situation is extremely frustrating- I cannot work as an NP because I haven't taken the test and have been too overwhelmed making life-or-death decisions lately to even study for the test. I can't get an RN job for the life of me because I have no experience. I was pretty sure I could snag one of Planned Parenthood's open positions when I did become certified, but they have filled them since I did my clinical there. Even more depressing right now, I pretty much landed a high school gymnastics coaching team position, but had to turn it down when I found out I needed surgery. I can't spot teenagers after major abdominal surgery.
And my car decided to stop working... the 6-month premium was due... Basically this is what has been on my mind lately. Not the fact that I am having major surgery. Ridiculous, huh?
November 6, 2010
All we have to decide is what to do with the time that is given to us
Thoughts, feelings....
This is from an unfinished blog entry I wrote BEFORE the PET scan. Sorry if it is morbid and depressing- this is just what I was thinking at the time. I was debating publishing this at all, but then I just decided to go for it.
READ WITH CAUTION:
----------------------------------------------------------------------------------------------------------------
Dated: a few weeks ago, 4am:
What do you do when you know you are going to die? What do you think about? Where do you start?
I know I am going to die from this. I know it. It fucking sucks because I have just found myself. At 29 years things have just started to come together: school is finished. I love my house, my friends. My best friend is finally on the West Coast. And I discovered festivals. Happy lands. Places where I am truly happy, something which I have been searching for since I was 16. Nature is all around me. I belong here on the West Coast. I am happy.
Now I am at a turning point. Expectations for myself. Expectations of other people. Happiness for myself. Happiness of other people. Who do I please? I am a caring person, I need to make my closest friends and family happy. I take care of them and they take care of me. But I have so much I need to do in this time.
I saw the ocean last month and it changed my life. Granted my mind was a little altered and running high after a festival... I need to be at the ocean. I need to explore the sealife, surf, swim, feel the rhythm of the waves, feel the hot sun on my body as I lay in the sand. THIS IS WHAT I AM MEANT TO DO. And then travel. I was meant to travel. I am an explorer, a toucher, experiencer, feeler. I need external stimuli. I do love that I know this about myself. I need to explore.
So what do I do with this knowledge is my dilemma. Decisions. Decisions that cannot wait any longer.
Do I just say fuck this nurse practitioner thing? I am doing something good for society and giving back, making a difference. But was just going through the hell of school enough experience I needed in that area? Am I done with that part of my life?
After talking to a friend about their work in childcare, I realize that I miss coaching SO much. I can't believe I ever stopped. I hate SU and all the sacrifices I have made in the past 4 years. At the same time, it is school that made me stronger, strong enough to be able to deal with cancer treatment. School GOT ME TO SEATTLE. I never will regret that.
I am meant to work with kids. I am great at it. I get them. I treat them like adults which is something that their parents or other people dont. I respect them. They make me happy. Their innocence reminds me that everything can be ok. I need to be around that now.
Can't you see how confusing this is? Decisions! I'm rambling and my mind is running in circles. Planned Parenthood gave me the happiness that coaching did. Right now that may be the sole reason why I could remain a NP. But I have to take that test! That damn thing is sitting in the back of my mind, but almost forgotten because of my financial trouble, complications with a breakup, and all of this cancer stuff. I seriously think that I am waiting for the results of the PET to make this decision. Because it may not be worth it. I may be dying NOW.
Normal people don't think about dying. I know some depressed people do, not that's normal. And I used to. For so many years in my worst depressions I have thought about ending my life. Now I am fighting to live. How ironic.
Soooooo.... what do I want to do?
Choices: (clearly must be a bulleted list)
I need my sister. I miss her more than anyone else right now. I really have no one to talk to about all of this. No objective people who will just listen to me and let me have my "unreasonable" dreams. No involvement with my ex. No lecturing me about finances. No urging me to restart treatment as opposed to living the rest of my life in happiness. My sister can be my favorite person in the world yet we never talk. I love her so much and I never get to see her. She is so far away. But I can never move home.
Crazy talk. Still no resolution. So much going on. I need a personal assistant so bad. I need so much help and I'm not sure how to get it. I can't do this right now on my own. I'm a fucking mess.
Would having money change everything? I hate money and capitalism, and so don't want to run my life. But yet again it does. Money is the root of all evil. I have made so many poor decisions out of desperation for money. Why did I leave coaching? Partly because of money. If I had money right now would things be that much greater? At this point maybe yes. I could hire a personal assistant. I could have the best fucking cancer treatment ever that may actually save my life. I could live all of my dreams of travel, being near the ocean- even flying my parents out and supporting them while I'm dying of cancer. Ahhhhhhh why does money have to matter so much? @#$#^$%&%^&%^&%$!!!!!!!!!!
I just need to stop considering and DO. Stop talking the talk and walk the walk or whatever. I guess I need a sign. Or maybe I just need to pay attention and act on all the signs that have been out there all along.
To be continued....
This is from an unfinished blog entry I wrote BEFORE the PET scan. Sorry if it is morbid and depressing- this is just what I was thinking at the time. I was debating publishing this at all, but then I just decided to go for it.
READ WITH CAUTION:
----------------------------------------------------------------------------------------------------------------
Dated: a few weeks ago, 4am:
What do you do when you know you are going to die? What do you think about? Where do you start?
I know I am going to die from this. I know it. It fucking sucks because I have just found myself. At 29 years things have just started to come together: school is finished. I love my house, my friends. My best friend is finally on the West Coast. And I discovered festivals. Happy lands. Places where I am truly happy, something which I have been searching for since I was 16. Nature is all around me. I belong here on the West Coast. I am happy.
Now I am at a turning point. Expectations for myself. Expectations of other people. Happiness for myself. Happiness of other people. Who do I please? I am a caring person, I need to make my closest friends and family happy. I take care of them and they take care of me. But I have so much I need to do in this time.
I saw the ocean last month and it changed my life. Granted my mind was a little altered and running high after a festival... I need to be at the ocean. I need to explore the sealife, surf, swim, feel the rhythm of the waves, feel the hot sun on my body as I lay in the sand. THIS IS WHAT I AM MEANT TO DO. And then travel. I was meant to travel. I am an explorer, a toucher, experiencer, feeler. I need external stimuli. I do love that I know this about myself. I need to explore.
So what do I do with this knowledge is my dilemma. Decisions. Decisions that cannot wait any longer.
Do I just say fuck this nurse practitioner thing? I am doing something good for society and giving back, making a difference. But was just going through the hell of school enough experience I needed in that area? Am I done with that part of my life?
After talking to a friend about their work in childcare, I realize that I miss coaching SO much. I can't believe I ever stopped. I hate SU and all the sacrifices I have made in the past 4 years. At the same time, it is school that made me stronger, strong enough to be able to deal with cancer treatment. School GOT ME TO SEATTLE. I never will regret that.
I am meant to work with kids. I am great at it. I get them. I treat them like adults which is something that their parents or other people dont. I respect them. They make me happy. Their innocence reminds me that everything can be ok. I need to be around that now.
Can't you see how confusing this is? Decisions! I'm rambling and my mind is running in circles. Planned Parenthood gave me the happiness that coaching did. Right now that may be the sole reason why I could remain a NP. But I have to take that test! That damn thing is sitting in the back of my mind, but almost forgotten because of my financial trouble, complications with a breakup, and all of this cancer stuff. I seriously think that I am waiting for the results of the PET to make this decision. Because it may not be worth it. I may be dying NOW.
Normal people don't think about dying. I know some depressed people do, not that's normal. And I used to. For so many years in my worst depressions I have thought about ending my life. Now I am fighting to live. How ironic.
Soooooo.... what do I want to do?
Choices: (clearly must be a bulleted list)
- Pack up and leave for an amazing overseas adventure. I can meet up with my friend in Thailand and India and then travel the rest of my life avoiding my debt. Very Very VERY appealing
- Move to the ocean. Hawaii? Cali? Again with the travel and overseas?
- Fuck the medical field and nursing and start coaching again living in debt
- Go off the grid and be a traveling bum with a performing arts troupe. Or better yet, a bunch of burners. Just live the life, even if hard, but packing up and seeing where life takes you. Like the movie "In The Wild." Burn my IDs and credit cards and give up my possessions to live out of a backpack. Inspiring..
I need my sister. I miss her more than anyone else right now. I really have no one to talk to about all of this. No objective people who will just listen to me and let me have my "unreasonable" dreams. No involvement with my ex. No lecturing me about finances. No urging me to restart treatment as opposed to living the rest of my life in happiness. My sister can be my favorite person in the world yet we never talk. I love her so much and I never get to see her. She is so far away. But I can never move home.
Crazy talk. Still no resolution. So much going on. I need a personal assistant so bad. I need so much help and I'm not sure how to get it. I can't do this right now on my own. I'm a fucking mess.
Would having money change everything? I hate money and capitalism, and so don't want to run my life. But yet again it does. Money is the root of all evil. I have made so many poor decisions out of desperation for money. Why did I leave coaching? Partly because of money. If I had money right now would things be that much greater? At this point maybe yes. I could hire a personal assistant. I could have the best fucking cancer treatment ever that may actually save my life. I could live all of my dreams of travel, being near the ocean- even flying my parents out and supporting them while I'm dying of cancer. Ahhhhhhh why does money have to matter so much? @#$#^$%&%^&%^&%$!!!!!!!!!!
I just need to stop considering and DO. Stop talking the talk and walk the walk or whatever. I guess I need a sign. Or maybe I just need to pay attention and act on all the signs that have been out there all along.
To be continued....
October 16, 2010
Here we go again
It's back.
The Facts:
I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.
I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.
What's weird is that my CA-125 drawn last week (tumor marker) was even lower than before, at 9. So now we know that it is not an effective marker for my kind of cancer- this is bad news because it is much easier and safer to draw blood rather than subject my self to radiation all the time. Now there is no real good way to monitor the progression and whether treatments are working.
So now what?
1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.
1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.
2.) Further lab tests. For some reason I haven't gotten a CBC or metabolic panel recently. I wonder how my platelets are because last time they were really high which puts me at risk for clotting. Also, I've been pretty dizzy when standing lately- more than usual. I wonder if I'm anemic?
3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.
3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.
This is the plan for now, because everything else depends on the results of the PET scan which is scheduled the 23rd of October. Now it's just planning again for yet another year of my life battling this thing
March 6, 2010
First 3 month checkup soon, work, school updates
Second checkup is this coming Friday. I'm kinda nervous. I'm going to get my blood test on Monday, so that I can have my doc tell me the results rather than me calling in 3-4 days. I don't feel any different and don't have any symptoms, but I keep questioning whether what I know what bloating really feels like. I don't think I'm bloated. It's been so long since I've had PMS that I forgot that whole part :)
One thing I have been following is my weight. I always have weighed myself- I used the number within a couple of pounds to measure whether I need to eat a little better or work out a little harder. People give me that "but you're not fat!" crap and that I shouldn't care, but I always remind them that the reason why I am not fat is that I pay attention. Anyways, it's weird with my condition now, because my weight is really important to follow now. I don't want to lose pounds because that was the main symptom that led me to seek medical help. I don't want to gain weight because that means it may be water weight or bloating from ascites. To complicate things, I have been working out a little more so I am building muscle and my weight is increasing a bit. So as of now, I don't really know what my base weight should be. What I do know is that at the beginning of January, after going home for the holidays, I gained about 9 lbs.(thanks Midwest :( ). Now I have slowly lost that weight, but is that ok? How much of it can be attributed to eating better and working out? Fortunately it has been stable in the past month. Still interesting though.
Hmm.. what else. I have a on-call RN job at a Psych organization. I basically give meds and chart and that's about it. Stuff that they are overpaying an RN to do, as it is an LPN job. Well I had 5 days of training and a staff meeting, and NO OTHER HOURS. Nobody is going on vacation. It's actually a fun job and the clients are great, but I need money. Still searching... At least I have my foot in the door. I figure that I only have to work 3-4 shifts a month to live on. Just think of how much I could have been making in these past 9 months :(
I wouldn't have to take out MORE school loans and wouldn't be so bored all the time.
As far as school goes, I am registered for my clinical course and found out one of the clinics I will be working at- it's exactly the same doctor who I was working with last winter when I was diagnosed! I'm relieved because he knows my whole situation and so I don't have to explain why I may be a little behind. I hope the information comes back quick. I have been studying up but it's not the same as actually practicing medicine..
Ok more updates to come soon!
One thing I have been following is my weight. I always have weighed myself- I used the number within a couple of pounds to measure whether I need to eat a little better or work out a little harder. People give me that "but you're not fat!" crap and that I shouldn't care, but I always remind them that the reason why I am not fat is that I pay attention. Anyways, it's weird with my condition now, because my weight is really important to follow now. I don't want to lose pounds because that was the main symptom that led me to seek medical help. I don't want to gain weight because that means it may be water weight or bloating from ascites. To complicate things, I have been working out a little more so I am building muscle and my weight is increasing a bit. So as of now, I don't really know what my base weight should be. What I do know is that at the beginning of January, after going home for the holidays, I gained about 9 lbs.(thanks Midwest :( ). Now I have slowly lost that weight, but is that ok? How much of it can be attributed to eating better and working out? Fortunately it has been stable in the past month. Still interesting though.
Hmm.. what else. I have a on-call RN job at a Psych organization. I basically give meds and chart and that's about it. Stuff that they are overpaying an RN to do, as it is an LPN job. Well I had 5 days of training and a staff meeting, and NO OTHER HOURS. Nobody is going on vacation. It's actually a fun job and the clients are great, but I need money. Still searching... At least I have my foot in the door. I figure that I only have to work 3-4 shifts a month to live on. Just think of how much I could have been making in these past 9 months :(
I wouldn't have to take out MORE school loans and wouldn't be so bored all the time.
As far as school goes, I am registered for my clinical course and found out one of the clinics I will be working at- it's exactly the same doctor who I was working with last winter when I was diagnosed! I'm relieved because he knows my whole situation and so I don't have to explain why I may be a little behind. I hope the information comes back quick. I have been studying up but it's not the same as actually practicing medicine..
Ok more updates to come soon!
March 3, 2009
Treatment
"Clear cell ovarian cancer is particularly aggressive and somewhat resistant to chemo." that's what my doc said during our post-op appointment. Therefore it needs to be treated aggressively with chemo and possibly radiation.... The first line treatment for ovarian cancer is usually a combination of Taxol and Carboplatin. This is effective for 95% of the other types of epithelial OC- but it may not work as well as expected for my rare clear cells (clear cells are <5%>
So I went to SCCA for my appointment. As you come into the building you have to get 'screened' for respiratory illness- meaning you fill out a little survey about cold symptoms, and you get a little 'i've been screened today' sticker (if you have symptoms I think you just wear a mask). You also always have to show your little green card that is like a credit card with all your identification information on it. I wonder how difficult it is for the receptionists to explain to foreign-language speaking patients why they have to show their green card. Anyways, I sat in the waiting room and remember being confused because there was a "isolation" section and a regular section. I wasn't really sure which one to sit in (was it for chemo patients or for those with respiratory illnesses?). When it was time for me to go back to the room for treatment, all the nurse did was say to me the number 20. I didn't know what the meant, but after looking confused another nurse led me to room 20. She gave me the full tour: RN station, bathrooms, snack room, and at least two other hallways for a total of 40 or so rooms. I laid on the bed and the nurse offered me a warm blanket, something to drink, and some oreos. The room had the usual reclining hospital bed with cable tv. It was kind of like a relaxing little day at the spa- everyone was giving you blankets, food (even a box lunch), snacks, etc. Not too bad.
The nurse then started my IV and ran some Benadryl. I've never had IV Benadryl before, but it's a trip! Within 15 sec the walls were getting a little wavy and I was zonked out. I guess there is something in the Taxol that people react to, so they have to load me with Benadryl and dextamethasone beforehand. That took about an hour, followed by a 1hr drip of the Taxol and 3hrs of the Carboplatin. All this time I was pretty much too tired to do anything but sleep and eat oreos- until my bladder started hating me. Suddenly I was having to go every 15-30min because of the liters of fluids being pumped into me. Such a pain in the ass too cause I had to unplug the IV machine and carry it on the pole with me to the bathroom while drugged on Benadryl. Eventually I got to nap some more, but then again was awakened by annoyance- a friendly chaplain had come to visit. Apparently the SCCA offers this service to anyone wanting some emotional therapy- but geez- waiting until I could barely move mouth from benadryl was not the time. She kept talking on and on.. and all the time saying "oh- I should let you rest". Sorry but the last thing I needed at that moment was a chaplain.
When I got home that night I felt ok and just went to bed. They sent me home with Lorazepam and Compazine for nausea, and a 3day dose of dextamethasone to further prevent an immune reaction. For the next few days I had no nausea which was great. I instead was extremely tired and pretty useless sitting in bed all day watching movies or sleeping. On day 4 I stopped all of the above meds and started to feel so much better! I had a little more energy and was much more functional.
So the major side effects of these two drugs are like many other chemos: nausea, bone marrow failure (low red and white blood cells and low platelets= more prone to anemia, infection, and hemorrhage), peripheral neuropathy (loss of sensation in my extremities) and of course- a sexy big bald head. I knew all this yet no one told me when it would all happen. Well 5 days later on Friday I started having awful bone pain. It ached in my knee cap and shin bone so much that I didn't really feel like moving around. I took some narcotics and that helped a little but the dull ache was pretty much still there. Then Saturday morning I woke up with the tinglies. My fingertips and pads of my toes are numb. Walking on carpet with bare feet felt odd, as well as the feel of the dishes in my hand as I unloaded them from the washer. It's hard to explain but this is what is expected. What I didn't expect is that I have been having some loss of balance. Sometimes just standing in the shower I feel myself tipping a little to the side. Now that's weird. My Romberg test was normal ;) I'm a gymnast- I don't have balance problems!!!
Now all that's on my mind is the impending hair loss. People told me that it happens in a week. Well, there is nothing on my pillow, nothing in my brush or in my shower drain. I'm totally prepared for it- I am going to shave my head with two good friends the second that it starts coming out in clumps. `I think of it as an easy way to go into summer- no need to shave my legs, no need to worry about washing the sea water out. It's also an excuse to buy new accessories such as scarves and maybe some colorful wigs. I'm now just waiting. And it's too bad I just bought new razors, a bottle of shampoo, and hair dye!
The nurse then started my IV and ran some Benadryl. I've never had IV Benadryl before, but it's a trip! Within 15 sec the walls were getting a little wavy and I was zonked out. I guess there is something in the Taxol that people react to, so they have to load me with Benadryl and dextamethasone beforehand. That took about an hour, followed by a 1hr drip of the Taxol and 3hrs of the Carboplatin. All this time I was pretty much too tired to do anything but sleep and eat oreos- until my bladder started hating me. Suddenly I was having to go every 15-30min because of the liters of fluids being pumped into me. Such a pain in the ass too cause I had to unplug the IV machine and carry it on the pole with me to the bathroom while drugged on Benadryl. Eventually I got to nap some more, but then again was awakened by annoyance- a friendly chaplain had come to visit. Apparently the SCCA offers this service to anyone wanting some emotional therapy- but geez- waiting until I could barely move mouth from benadryl was not the time. She kept talking on and on.. and all the time saying "oh- I should let you rest". Sorry but the last thing I needed at that moment was a chaplain.
When I got home that night I felt ok and just went to bed. They sent me home with Lorazepam and Compazine for nausea, and a 3day dose of dextamethasone to further prevent an immune reaction. For the next few days I had no nausea which was great. I instead was extremely tired and pretty useless sitting in bed all day watching movies or sleeping. On day 4 I stopped all of the above meds and started to feel so much better! I had a little more energy and was much more functional.
So the major side effects of these two drugs are like many other chemos: nausea, bone marrow failure (low red and white blood cells and low platelets= more prone to anemia, infection, and hemorrhage), peripheral neuropathy (loss of sensation in my extremities) and of course- a sexy big bald head. I knew all this yet no one told me when it would all happen. Well 5 days later on Friday I started having awful bone pain. It ached in my knee cap and shin bone so much that I didn't really feel like moving around. I took some narcotics and that helped a little but the dull ache was pretty much still there. Then Saturday morning I woke up with the tinglies. My fingertips and pads of my toes are numb. Walking on carpet with bare feet felt odd, as well as the feel of the dishes in my hand as I unloaded them from the washer. It's hard to explain but this is what is expected. What I didn't expect is that I have been having some loss of balance. Sometimes just standing in the shower I feel myself tipping a little to the side. Now that's weird. My Romberg test was normal ;) I'm a gymnast- I don't have balance problems!!!
Now all that's on my mind is the impending hair loss. People told me that it happens in a week. Well, there is nothing on my pillow, nothing in my brush or in my shower drain. I'm totally prepared for it- I am going to shave my head with two good friends the second that it starts coming out in clumps. `I think of it as an easy way to go into summer- no need to shave my legs, no need to worry about washing the sea water out. It's also an excuse to buy new accessories such as scarves and maybe some colorful wigs. I'm now just waiting. And it's too bad I just bought new razors, a bottle of shampoo, and hair dye!
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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