Continued from Part 1.
So I'm no longer in horrific pain, I'll never have a menstrual cycle EVER again, the huge mass in my stomach is nothing to worry about .... what could possibly go wrong?
Well, it started with Dr. S explaining how she actually got the
pathology results a couple days ago but made them run it again. And just like that I knew she was about to say something that would turn my world upside down.
"Don't worry everything is ok, but you had precancerous cells in your uterus."
Huh?
Pre-WHAT???
It was definitely one of those moments when time seems to stand still. It was a mostly sunny day, my
kids were playing outside in the front yard, everything
was as it should be .... until all of a sudden it wasn't.
Dr. S must have read my mind because the next thing she said was how incredibly surprised she was, that she honestly thought she got the wrong person's results. I believe
her exact words were, "Even the pathologist was surprised, and
pathologists don't get surprised."
If both my OBGYN and the pathologist couldn't believe it, then you can only imagine how I was feeling.
Almost as worrisome as having "precancerous
cells" is the fact that I didn't have any of the risk factors or
symptoms. The actual medical term, which I couldn't remember and had to
look it up, is atypical endometrial hyperplasia. And it is
defined as:
".... unusual or excessive cell growth in the
inner glandular lining of the uterus. Most cases of endometrial
hyperplasia result from high levels of estrogen. This may occur in a number of settings, including
obesity and polycystic ovarian syndrome. Endometrial hyperplasia typically presents with abnormally heavy uterine
bleeding and is most common in women who are post-menopausal."
If anything I have low (not high) levels of
estrogen because of all the years of suppression. I'm not overweight and never have been. I did struggle (a lot) with
infertility but it wasn't because of my ovaries. I've never
experienced heavy bleeding, not even as a teenager. And my FSH levels
are normal so I'm definitely not post-menopausal.
My first thought was .... So if I don't have a single risk factor, how did this happen? And that was quickly followed by .... What if we hadn't done the surgery, would I have gotten cancer? Is it possible I have cancer cells in other parts of my body? Is it genetic and do I need to worry about my daughter having the same thing (let alone my mom)?
Dr. S then explained the stages of endometrial hyperplasia. Unfortunately the cells found in my uterus were the most serious and carried the highest risk (up to 35%) of developing into endometrial cancer.
The good news (YES, THERE IS GOOD NEWS!) is that in most cases the treatment is a full hysterectomy. Sure glad I just had one of those!
Not
that I'm taking even a fraction of the credit, but in that moment I knew my
persistence in pushing for surgery had more than paid off.
Even better news was when Dr. S sent the pathology to be re-tested, she made sure they checked
every tiny molecule of surrounding tissue, and there was absolutely no
evidence of precancerous cells anywhere else.
There's part of me that's still processing what all of this means, but for now I'm just going to be thankful.
Thankful for the circumstances that got me here, for being my own
advocate all of those years, for my health going forward, and for Dr. S
who may have just saved my life!
Sunday, March 10, 2013
Friday, March 8, 2013
13 words I never expected to hear (Part 1)
Yesterday afternoon I got a phone call from Dr. S. I hadn't talked to her since the day of my surgery so I was excited to tell her how good I was feeling, that I was already weaning myself off the pain meds, and was even up and about doing a few things.
My biggest complaint wasn't even related to my uterus being taken out or even the incision in my stomach. Instead it was the gas pain. I had a laparoscopy 7 years ago, also because of endometriosis, so I knew that during surgery they fill your abdomen with gas. Well, they call it "gas" but it's basically just air. Even so, when they fill your belly so full that you look 6 months pregnant, it's not very much fun. They do this for two reasons: so they can gently and safely move nearby organs out of the way, and so they have more space to see what they're doing and perform the procedure. Expelling the gas was more painful and taking longer that I remembered. Dr. S reassured me this was totally common and nothing to be worried about.
Then she said 13 words I never expected to hear.
But first, a little context ...
Dr. K had already called with his portion of the pathology results. As anticipated, the mass in my upper abdomen was a build up of endometrial tissue. While this was good news, it was also very unusual. By definition the endometrium is the innermost layer (the lining) of the uterus. So the fact that I had an endometrial mass so high up in abdomen, which was no where near my uterus, was very strange.
Let alone that it was significantly bigger than normal!
Most endometrial lesions are 1-3 millimeters, which is about the thickness of a quarter turned on its side.
By comparison, the mass from my abdomen was a little over 3 centimeters, which is the size of that same quarter plus half of another quarter laying flat.
It wasn't until Dr. K resected the mass that he realized it was also encased in an even larger hematoma. So not only did I had severe endometriosis, which was miserable enough on its own. But I also had this abnormally large ball of endometrial tissue that was covered like wrapping paper with a blood clot. (A blood clot that Dr. K aptly described as "the consistency of warm Nutella". YUCK!)
Although both the location and size of the mass were out of the norm, it was a relief to know the pathology was negative.
That relief, however, would be short lived.
To be continued ...
My biggest complaint wasn't even related to my uterus being taken out or even the incision in my stomach. Instead it was the gas pain. I had a laparoscopy 7 years ago, also because of endometriosis, so I knew that during surgery they fill your abdomen with gas. Well, they call it "gas" but it's basically just air. Even so, when they fill your belly so full that you look 6 months pregnant, it's not very much fun. They do this for two reasons: so they can gently and safely move nearby organs out of the way, and so they have more space to see what they're doing and perform the procedure. Expelling the gas was more painful and taking longer that I remembered. Dr. S reassured me this was totally common and nothing to be worried about.
Then she said 13 words I never expected to hear.
But first, a little context ...
Dr. K had already called with his portion of the pathology results. As anticipated, the mass in my upper abdomen was a build up of endometrial tissue. While this was good news, it was also very unusual. By definition the endometrium is the innermost layer (the lining) of the uterus. So the fact that I had an endometrial mass so high up in abdomen, which was no where near my uterus, was very strange.
Let alone that it was significantly bigger than normal!
Most endometrial lesions are 1-3 millimeters, which is about the thickness of a quarter turned on its side.
By comparison, the mass from my abdomen was a little over 3 centimeters, which is the size of that same quarter plus half of another quarter laying flat.
It wasn't until Dr. K resected the mass that he realized it was also encased in an even larger hematoma. So not only did I had severe endometriosis, which was miserable enough on its own. But I also had this abnormally large ball of endometrial tissue that was covered like wrapping paper with a blood clot. (A blood clot that Dr. K aptly described as "the consistency of warm Nutella". YUCK!)
Although both the location and size of the mass were out of the norm, it was a relief to know the pathology was negative.
That relief, however, would be short lived.
To be continued ...
Tuesday, March 5, 2013
Surgery (Part 2)
Continued from Part 1.
I met Dr. K, the general surgeon, on Thursday. While it definitely felt weird meeting him for the first time less than 24 hours before he'd be cutting into my stomach, he was really nice and explained exactly what he'd be doing. And he promised to make the incision as small as possible!
Dr. K would remove the mass first, and then Dr. S would perform the hysterectomy. A total hysterectomy is defined as the removal of both the uterus and cervix. Dr. S would also be removing both fallopian tubes and my right ovary. As long as there wasn't a significant amount endometriosis or scar tissue, she would leave my left ovary so I wouldn't have to do hormone replacement (and I REALLY didn't want to go down that road again).
The next thing I remember after being wheeled into the operating room was waking up to Billy and my dad watching golf on TV. I kept trying to talk to them but I was so groggy I couldn't even keep my eyes open. Another couple hours went by before I had an actual conversation with them. They were happy to tell me both surgeries went really well, and best of all, I still had my left ovary!
I was in surgery for a total of 3 hours and 15 minutes. While it took a little longer than expected to remove the mass, the hysterectomy went really quick. There actually wasn't a whole lot of endometriosis, which was quite remarkable given my history and symptoms.
Dr. S cauterized several small areas of endometriosis, but ran into some trouble when trying to remove a medium sized lesion on my right ureter. Without getting too technical, the ureters are long, narrow tubes that connect the kidneys to the bladder. After carefully trying to remove the lesion one layer at a time, Dr. S decided it was just too risky. We had talked about this type of scenario ahead of time, and we both agreed it wasn't worth compromising the functionality of a major organ. When I spoke with her on the phone the next day, I told her I thought she made the absolute right decision.
Billy left around 4:30pm so he could get home and eat dinner with the kids. About 20 minutes later the nurse came in and asked if I wanted to go for a walk (actually it was more of a request than a question). She gave me a walker and I shuffled along slowly.
My mom got there around 7:00pm and would stay with me until I was discharged the next day. I went for another walk around 11:00pm, without the walker this time, and that really wiped me out. I tried to sleep but one nurse or another kept coming in to check on me. At 5:30 the next morning, a nurse I hadn't seen before came in and said it was time to take out my catheter. As gross and unappealing as it might seem, the catheter was actually quite convenient and one less thing I had to worry about. I was told the earliest I'd be leaving the hospital would be early afternoon, so why did it have to be taken out right now?
My mom could tell I was anxious about taking it out and told the nurse that wasn't going to happen. I don't think the nurse was happy being told what to do, but oh well. After that I was able to sleep a little more. And later when I tried getting up to go for another walk, I almost fainted. So I wouldn't have been able to use the bathroom myself anyway. (Always trust your 'gut' instincts!)
After eating a few bites of cold eggs (hospital food is the WORST), I tried getting up again. Nope. I was starting to get upset because I really didn't want to stay another night. I rested and ate some Saltine crackers, but what I really wanted to do was go home. I knew I had to be able to walk on my own and go to the bathroom, and I was determined to do both.
Finally I was able to go for a walk without feeling like I was going to faint, so we called the nurse and she took the catheter out. Shortly after that I was able to use the bathroom on my own, and I even showered and got dressed.
I was discharged around 2:15pm and the kids were waiting for me as soon as we pulled in. I got snuggles from everyone and then it was time to lie back down and rest.
I met Dr. K, the general surgeon, on Thursday. While it definitely felt weird meeting him for the first time less than 24 hours before he'd be cutting into my stomach, he was really nice and explained exactly what he'd be doing. And he promised to make the incision as small as possible!
Dr. K would remove the mass first, and then Dr. S would perform the hysterectomy. A total hysterectomy is defined as the removal of both the uterus and cervix. Dr. S would also be removing both fallopian tubes and my right ovary. As long as there wasn't a significant amount endometriosis or scar tissue, she would leave my left ovary so I wouldn't have to do hormone replacement (and I REALLY didn't want to go down that road again).
The next thing I remember after being wheeled into the operating room was waking up to Billy and my dad watching golf on TV. I kept trying to talk to them but I was so groggy I couldn't even keep my eyes open. Another couple hours went by before I had an actual conversation with them. They were happy to tell me both surgeries went really well, and best of all, I still had my left ovary!
I was in surgery for a total of 3 hours and 15 minutes. While it took a little longer than expected to remove the mass, the hysterectomy went really quick. There actually wasn't a whole lot of endometriosis, which was quite remarkable given my history and symptoms.
Dr. S cauterized several small areas of endometriosis, but ran into some trouble when trying to remove a medium sized lesion on my right ureter. Without getting too technical, the ureters are long, narrow tubes that connect the kidneys to the bladder. After carefully trying to remove the lesion one layer at a time, Dr. S decided it was just too risky. We had talked about this type of scenario ahead of time, and we both agreed it wasn't worth compromising the functionality of a major organ. When I spoke with her on the phone the next day, I told her I thought she made the absolute right decision.
Billy left around 4:30pm so he could get home and eat dinner with the kids. About 20 minutes later the nurse came in and asked if I wanted to go for a walk (actually it was more of a request than a question). She gave me a walker and I shuffled along slowly.
My mom got there around 7:00pm and would stay with me until I was discharged the next day. I went for another walk around 11:00pm, without the walker this time, and that really wiped me out. I tried to sleep but one nurse or another kept coming in to check on me. At 5:30 the next morning, a nurse I hadn't seen before came in and said it was time to take out my catheter. As gross and unappealing as it might seem, the catheter was actually quite convenient and one less thing I had to worry about. I was told the earliest I'd be leaving the hospital would be early afternoon, so why did it have to be taken out right now?
My mom could tell I was anxious about taking it out and told the nurse that wasn't going to happen. I don't think the nurse was happy being told what to do, but oh well. After that I was able to sleep a little more. And later when I tried getting up to go for another walk, I almost fainted. So I wouldn't have been able to use the bathroom myself anyway. (Always trust your 'gut' instincts!)
After eating a few bites of cold eggs (hospital food is the WORST), I tried getting up again. Nope. I was starting to get upset because I really didn't want to stay another night. I rested and ate some Saltine crackers, but what I really wanted to do was go home. I knew I had to be able to walk on my own and go to the bathroom, and I was determined to do both.
Finally I was able to go for a walk without feeling like I was going to faint, so we called the nurse and she took the catheter out. Shortly after that I was able to use the bathroom on my own, and I even showered and got dressed.
I was discharged around 2:15pm and the kids were waiting for me as soon as we pulled in. I got snuggles from everyone and then it was time to lie back down and rest.
Saturday, March 2, 2013
Surgery (Part 1)
Surgery was yesterday. Or should I say surgerIES, plural!
I had the first surgery time slot of the day (7:30 am) but had to be there 2 hours early. Pre-op procedures and all. My dad and Billy took me to the hospital and would stay until I was out of recovery, then switch with my mom and she would stay the night with me.
My mom had the kids during the day since they have a standing playdate on Fridays. I wanted to keep things as "normal" as possible for the kid, but they still knew something was up. We had talked to them a lot about how Mommy had an "ouchy tummy" and was going to have surgery. I know everybody, including my kids, were anxious and excited for me to finally be healthy again (as in, not in horrific pain and completely bed ridden for weeks at a time).
I checked in, signed all the waivers, and got my wrist band. As we were waiting, I went over the kids' schedule with Billy for what seemed like the fifteenth time. Remember to take them to Pottery Barn Kids for Dr. Seuss story time, don't forget their goggles for swim class, make sure they eat their vitamins. Billy just rolled his eyes. I would be in the hospital for less than 2 days, plus he is a great dad and more than capable of taking care of the kids on his own. I think I just needed something else to focus on besides my own apprehension. (Was the surgery going to work? What were they going to find when they got in there? Would I be able to keep one ovary?).
A few minutes later the nurse called me back. In my previous surgery experiences, someone (usually just one person) was allowed to come with me. Not this time though. The nurse did say that Billy, and I assumed my dad too, could come see me before I got wheeled back.
Now I was officially nervous. Whenever I'm anxious or stressed, especially in social settings, I talk a lot. So in the short time it took to take my vitals, the nurse must have felt like we were new BFF's.
Then it was time to do the IV. Not usually a good experience for me, and as much as I wish I could say this time was different, it wasn't. I was already sweating just thinking about it.
They tried my left hand first. Then my my left wrist. Then my left hand again. I have small veins and they tend to roll, making it that much harder. A different nurse tried my right hand, then my right wrist, and finally ended up putting it in the crook of my arm. Not the most ideal placement - anesthesiologists prefer the IV be in a location as far away from the body as possible. But by this time it was 7:35 and we were running late. There was a lot of rushing around but the nurse let Billy come back really quick and give me a kiss. Then she gave me some "happy medicine" (Valium I think) and everything else is a bit blurry.
I consider myself somewhat of a pro when it comes to surgeries. I've had 5 major surgeries, plus several other procedures in which I was also put under anesthesia. As expected the operating room was cold, there was music playing lightly in the background, and lots of bright lights and people in blue scrubs. I remember saying something about it being a "girl party" since both my OBGYN surgeons were women, as were both anesthesiologists, and all of the nurses. The general surgeon was a man though, and he got there just as I was falling asleep.
Speaking of the general surgeon, he was a last minute addition. At my pre-op appointment on Monday I was in a lot of pain, even more than normal. Even with the suppression shot (which was supposed to prevent me from getting a menstrual cycle), I had such severe cramps I couldn't even stand up straight. When the nurse came to get me I was crouched in a chair. She was used to seeing me like this and gave me a sad smile, the same sad smile I'd seen so many times before. But this time it came with something I wasn't nearly as familiar with - a sense of "this will all be over soon enough"!!!!!
I could also see something else in her eyes: REASSURANCE. That this phase of my life would soon be over. That there would no more urgent phone calls to the advice nurse, frantic trips to the pharmacy to pick up pain meds, or being so incapacitated I miss out on activities with my kids and husband. That all of the pain and suffering was finally coming to an end.
Dr. S asked me to describe the pain. A description we were both all too familiar with - on the right side from my hip bone up to the middle of my rib cage. Same as always. There was something else though. A few days earlier I felt what I thought was a "lump" in my upper abdomen, also on the right side. She had me lie back and very gently pressed down. I gasped when she got directly on the spot. "What is THAT?" she asked, more to herself than me. I could tell she was surprised but all I could think was, please don't tell me have to delay the surgery - or even worse, cancel it altogether?
She very calmly told me I needed to get an ultrasound. Right away! I could tell she was trying not to freak me out - and if I hadn't been in so much pain I probably would have been. She told me she needed to be able to see exactly what it looked like and where it was located.
I wouldn't know any of this until the next day, but it ended up being quite large (about 3cm) and under the muscular wall in the right upper quadrant of my abdomen. We agreed it would definitely need to be removed. Thankfully Dr. S (and her seemingly endless supply of miracles!) was able to get a general surgeon to come on board at the last minute. The surgery was still a GO!
To be continued ...
I had the first surgery time slot of the day (7:30 am) but had to be there 2 hours early. Pre-op procedures and all. My dad and Billy took me to the hospital and would stay until I was out of recovery, then switch with my mom and she would stay the night with me.
My mom had the kids during the day since they have a standing playdate on Fridays. I wanted to keep things as "normal" as possible for the kid, but they still knew something was up. We had talked to them a lot about how Mommy had an "ouchy tummy" and was going to have surgery. I know everybody, including my kids, were anxious and excited for me to finally be healthy again (as in, not in horrific pain and completely bed ridden for weeks at a time).
I checked in, signed all the waivers, and got my wrist band. As we were waiting, I went over the kids' schedule with Billy for what seemed like the fifteenth time. Remember to take them to Pottery Barn Kids for Dr. Seuss story time, don't forget their goggles for swim class, make sure they eat their vitamins. Billy just rolled his eyes. I would be in the hospital for less than 2 days, plus he is a great dad and more than capable of taking care of the kids on his own. I think I just needed something else to focus on besides my own apprehension. (Was the surgery going to work? What were they going to find when they got in there? Would I be able to keep one ovary?).
A few minutes later the nurse called me back. In my previous surgery experiences, someone (usually just one person) was allowed to come with me. Not this time though. The nurse did say that Billy, and I assumed my dad too, could come see me before I got wheeled back.
Now I was officially nervous. Whenever I'm anxious or stressed, especially in social settings, I talk a lot. So in the short time it took to take my vitals, the nurse must have felt like we were new BFF's.
Then it was time to do the IV. Not usually a good experience for me, and as much as I wish I could say this time was different, it wasn't. I was already sweating just thinking about it.
They tried my left hand first. Then my my left wrist. Then my left hand again. I have small veins and they tend to roll, making it that much harder. A different nurse tried my right hand, then my right wrist, and finally ended up putting it in the crook of my arm. Not the most ideal placement - anesthesiologists prefer the IV be in a location as far away from the body as possible. But by this time it was 7:35 and we were running late. There was a lot of rushing around but the nurse let Billy come back really quick and give me a kiss. Then she gave me some "happy medicine" (Valium I think) and everything else is a bit blurry.
I consider myself somewhat of a pro when it comes to surgeries. I've had 5 major surgeries, plus several other procedures in which I was also put under anesthesia. As expected the operating room was cold, there was music playing lightly in the background, and lots of bright lights and people in blue scrubs. I remember saying something about it being a "girl party" since both my OBGYN surgeons were women, as were both anesthesiologists, and all of the nurses. The general surgeon was a man though, and he got there just as I was falling asleep.
Speaking of the general surgeon, he was a last minute addition. At my pre-op appointment on Monday I was in a lot of pain, even more than normal. Even with the suppression shot (which was supposed to prevent me from getting a menstrual cycle), I had such severe cramps I couldn't even stand up straight. When the nurse came to get me I was crouched in a chair. She was used to seeing me like this and gave me a sad smile, the same sad smile I'd seen so many times before. But this time it came with something I wasn't nearly as familiar with - a sense of "this will all be over soon enough"!!!!!
I could also see something else in her eyes: REASSURANCE. That this phase of my life would soon be over. That there would no more urgent phone calls to the advice nurse, frantic trips to the pharmacy to pick up pain meds, or being so incapacitated I miss out on activities with my kids and husband. That all of the pain and suffering was finally coming to an end.
Dr. S asked me to describe the pain. A description we were both all too familiar with - on the right side from my hip bone up to the middle of my rib cage. Same as always. There was something else though. A few days earlier I felt what I thought was a "lump" in my upper abdomen, also on the right side. She had me lie back and very gently pressed down. I gasped when she got directly on the spot. "What is THAT?" she asked, more to herself than me. I could tell she was surprised but all I could think was, please don't tell me have to delay the surgery - or even worse, cancel it altogether?
She very calmly told me I needed to get an ultrasound. Right away! I could tell she was trying not to freak me out - and if I hadn't been in so much pain I probably would have been. She told me she needed to be able to see exactly what it looked like and where it was located.
I wouldn't know any of this until the next day, but it ended up being quite large (about 3cm) and under the muscular wall in the right upper quadrant of my abdomen. We agreed it would definitely need to be removed. Thankfully Dr. S (and her seemingly endless supply of miracles!) was able to get a general surgeon to come on board at the last minute. The surgery was still a GO!
To be continued ...
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