I have cancer

I had my total abdominal hysterectomy on April 11. After the surgery my oncologist surgeon told me everything looked good. She was sure I didn't have cancer. Since there was less than 1% chance that my fibroid was cancerous I felt confident that everything was good.

The surgery went well, although the pain after the surgery was hideous. I have a six inch vertical cut from my belly button down to right above my pelvic bone. It's not pretty but it was necessary to remove my uterus and the fibroid intact.

When I came out of the recovery room my three best friends were there waiting for me. I'm really lucky to have such great friends that care for me. I don't know how I'd get through this without them.

My body parts, uterus, fibroid, cervix and one ovary (one was left inside of me) were all sent to the lab to be biopsied. On April 17th I received a phone call from my surgeon's associate (my doctor was on vacation) that I have Uterine Leiomyosarcoma. She told me it was an extremely rare and aggressive cancer. The conversation was short since I had a followup visit with my surgeon on April 24.

After researching Uterine Leimyosarcoma (ULMS) online, I was very upset. This isn't the good uterine cancer, the one with a 90% five-year survival rate. This one is different. It's so rare that there isn't much known about it. It affects six in one million women.

I called my doctor's associate back last Thursday and asked several questions. I'm in Stage 1B which sounds good, but even at this stage it only has a 50% five-year survival rate. Those aren't very good odds. Also, the larger the tumor is over 5 cm (mine was 12 cm) the more likely it will reoccur even if all of it was removed during surgery. I'm thankful I'm not in Stage II since that stage only has a survival rate of 0 - 20%.

I stumbled across a blog by a woman that was diagnosed four and half years ago with Stage II ULMS. She's still going strong, but she had to completely change her life. From removing stress factors to changing her diet to all organic, natural foods and no sugar. Cancer feeds off of sugar.

Cancer also feeds off of estrogen, which is why I have to have my second ovary removed as soon as possible. Even though I'm postmenopausal it's still producing a minute amount of estrogen.

Fat also produces estrogen, so I'm on a diet. Not a crazy, starve myself type of diet, but a whole foods, healthy diet.

Other than the cancer, the criminal trial is on schedule for June 11 and the divorce in November. Very stressful events that I'm trying to handle without making myself crazy. I can't wait for this to all be over.

I will fight this cancer as hard as I can, and I'll do the best to change my life. It's not going to be easy, but it'll be worth it.

Update on surgery...there is no update

Well, it turns out that surgeons are human after all. Who knew? Just as my ride to the hospital pulled into my driveway yesterday at 7:30am, I received a phone call from the hospital that my surgeon had called in sick.

I wasn't mad at all, just terribly disappointed. It never occurred to me that my surgeon might get sick. I hadn't taken a Vicodin at 2am when the last dose had worn off. Since I couldn't eat or drink anything after midnight, I couldn't take the Vicodin. It makes me really nauseated if I take it without food. By 4am I thought if I wasn't going to the hospital in a few hours that I'd be driving myself to the ER. The pain was excruciating. The first thing I did after the phone call was take two Vicodin and go to bed.

The surgery is scheduled for Thrusday, 4/11 at 6am. This morning I thought I'd try to go without the Vicodin, and if I was okay, I'd go into the office. As expceted, the pain was once again unbearable and constant. In the beginning it would come and go without pain meds, now it comes and stays.

Back on the Vicodin. This means I can't go into work. They have a very strict rule of no narcotics while on the job. I'm also not suppose to drive while on Vicodin. So now I'm stuck at home and really can't do much of anything except read, watch TV or surf the internet. All of which puts me into instant sleep mode.

My newest side effect of my fibroid is that eating has become very unpleasant experience. Even the smallest amount of food sends me to a new level of pain. I guess because the my stomach presses down on my enlarged uterus causing the fibroid to then press down even harder on my cervix. I'm not sure if that's the problem, but I know that even when on the Vicodin, eating food causes pain almost instantly. Maybe I've found a new diet plan, "rapidly growing fibroid removes desire to eat". I somehow don't think this will be popular with the masses.

I sure do miss my good health. You never know how good you had it until it's gone. Once this is over, I plan on giving my health 100% focus. Okay, sleep time is coming on. I guess I'll go lay down now.

Update on my health issue

Below is an email I sent this morning to my friends, family and coworkers. I thought it was easier to just post this here too for my few friends I have out in the blog world.

Thank you for your kind emails. I haven't been very good about responding to anyone. I'm sorry. I'm sort of in a tizzy with everything happening so fast.

I'll post once I'm home on Wednesday or Thursday.

********************

 

Hi everyone,

Thank you for your kind words and thoughts. I really appreciate it.

 

I've been debating on how much to tell everyone about what's going on with my health. I've decided to give you some details since I told a couple of you there was a chance of cancer. If you don't want to know any of this, you should stop reading now. :)

 

********************
 

In January I started having some lower abdominal/pelvic pain. Mostly cramping with some stabbing pains. It went away after a week so I didn't think much about it.

About two weeks ago the pain started again, but this time it was worse, and it didn't go away. Every day the pain became a little more intense. In the last week and a half I've had a CT scan, an ultrasound, and a biopsy of my endometrium (lining of my uterus in case any guys are reading this). The biopsy was negative. However, there was a large mass growing in my uterus (they thought it was a fibroid, but not sure). They couldn't biopsy it because they didn't know where the cancer might be growing inside of it. They would have to remove the fibroid to biopsy it. My gynecologist discussed this with the gynecologic oncologist in Seattle and they thought it was best if I saw the oncologist to review my options (which turned out to be very limited).

After four hours of being poked and prodded Friday by the oncologist, she said she "thinks" what I have is a large, rapidly growing fibroid. Fibroids are usually not cancerous, but the ones that are cancerous are the rapidly growing ones. Since there's a possibility of cancer and since it's growing so fast (it actually increased in size since the Tuesday ultrasound), the gynecologic oncologist felt it was best if she does the surgery, a total abdominal hysterectomy.

The oncologist won't know if the fibroid is cancerous until she removes my uterus with the fibroid intact, and has it biopsied while she keeps "working on me". If it's cancer then my ovaries and lymph nodes will also be removed. She can't do the surgery laparscopically since the fibroid is so large, as she put it, the size of the head of a 32-week old fetus (or a very large grapefruit). She can't take the risk of the fibroid falling apart as she removes it because if it is cancerous the cancer cells would be released into my bloodstream and cause cancer to develop elsewhere. I thought that was interesting. I didn't even know that could happen.

Unfortunately, the abdominal incision will be vertical and about seven inches. She said she has to do the surgery this way since things are "abnormal" (I heard that word over and over). This is because of the size of the fibroid and how my uterus is pressing into my other organs and displacing them. She said it will be tricky to remove my enlarged uterus and not damage the surrounding organs. No worries on the incision because my bikini days are long gone, so this is the least of my problems.

My surgery is tomorrow, April 8, at 8:45am at the Seattle Virginia Mason Hospital. The surgery usually only takes an hour, but my oncologist said mine could take two to three hours since it's a bit more complicated than a normal hysterectomy. I'll be in the hospital for two or three days, then home for three to four weeks, depending on how the surgery goes (cancer versus no cancer).

I'm sure I don't have cancer. I don't feel like I do. :) Even if on the very remote chance it is cancer, it would be treatable so I'm not worried. Just another chapter of my already crazy life.

If anyone asks about me, feel free to share any of this information. As you all know, my life is an open book.

I'll update you once I'm home from the hospital. Take care, and I'll see all of you in a few weeks.

~Diana

Taking my good health for granted

Right now, I'm playing the waiting game. Waiting to hear if I have endometrial cancer. I keep telling myself I'm sure I don't have cancer. I don't "feel" like I have cancer. Yet there's that little voice in my head that keeps reviewing the statistics. Statistically, the odds are stacked against me.

Ive been thinking about the obesity factor. Obesity greater than 50 pounds over ideal body weight is 10 times more likely to develop endometrial cancer. I don't think I've ever heard this statistic before. If I had, would it have made a difference in my weight? Sadly, probably not. Because like most people, I thought I was invincible. I've always been blessed with good health. I thought that it would last forever. I was wrong.

Out of the higher risk factors for endometrial cancer, I have four of them: obesity, postmenopausal, lack of children and hypertension. I appear to be a textbook case for having endometrial cancer. Yet I still think this can't happen to me. I'm too healthy, things like this just don't happen to me, then I have the foot-stomping reaction...this just can't happen to me! Not now! I have too much to deal with, I can't take this on too! Honestly, God, what about that deal we have, where you will NOT give me more than I can handle? Then I calm down and tell myself I can handle whatever is thrown my way. My sister's stroke, my divorce, potential bankruptcy, cancer...it all seems to fit together. I got the bundle package of bad stuff that can happen to a person. I can only go up from here.

At Significantly Higher Risk for Endometrial Cancer (from womenscancercenter.com)

1. Obesity greater than 50 pounds (23 kg) over ideal body weight (10 times as likely).
2. Postmenopausal women.
3. Menopause after age 52 (2.4 times as likely).
4. Lack of children (twice as likely).
5. Women with hypertension (twice as likely).
6. Diabetics (2.8 times).
7. Women who do not ovulate, those with polycystic ovaries (Stein-Leventhal syndrome).
8. Estrogen replacement therapy without supplemental progesterone (seven times as likely).
9. History of pelvic radiation therapy (eight times).

Another sad fact for the obese woman, we can't even have laparscopic surgery if there's cancer, we have to have the old fashioned, slice open the abdomen surgery:

Surgery
Most gynecologic oncologists recommend a midline abdominal incision to gain access to the upper abdomen. However, laparoscopic surgery (minimal invasive surgery) including a hysterectomy, removal of both tubes and ovaries, removal of the pelvic and para-aortic lymph nodes can be performed in non-obese women, allowing a quicker release from the hospital, a quicker recovery, and where applicable, an earlier return to work. Complications of surgery include infection, bleeding and injury to the bladder, rectum or ureter causing a leak (rare). There may also be blood clots in the legs, occasionally dislodging and traveling to the lungs (pulmonary embolism).

I should get the results of the biopsy today. My doctor told me I would hear from her in a day or two. The biopsy was on Monday. Now I just have to wait.

I've changed my diet back to eating healthier and eating less. I haven't gone to the gym because I feel like my insides are going to fall out. I have intermittent stabbing pains that take my breath away. I don't have them all the time, sometimes I'll even go fifteen minutes without anything. I just don't have the desire to exercise right now. Funny how pain does that to a person.

My gym membership expires this month. I think that's sort of funny. Perfect timing since I won't be able to go for a few weeks if I have a regular hysterectomy. Or several weeks if the gynecologic oncologist performs the hysterectomy. I'm pretty sure I'm just going to renew my membership anyway, regardless of cancer or no cancer. As soon as I'm feeling better, I want to get back exercising.

I'll post as soon as I get the results of my biopsy. Maybe a cancer scare is just what I needed to wake up and take control of my health. It certainly has made me aware of what's important and just how much I love life.

Endometrial cancer biopsy of a nulliparous woman

Nulliparous:  a woman that has never given birth.

I wanted to post this while the experience is fresh in my mind. Also, if there's anyone out there that does a search for this, they can read about my experience.

I finished the procedure about 20 minutes ago. I'm not going to lie and say it didn't hurt, because it hurt like hell. The good part is it only hurt like hell for about three minutes. The other fifteen minutes were uncomfortable, but completely bearable. Those three minutes were bearable too since I'm sitting here writing about it, but it was some pretty intense pain. On my scale, I'd give it a 7 or 8. I've never given birth or had anything really bad to compare it too, so I probably tend to rate my pain higher than most people.

I am a nulliparous woman, meaning I have never given birth. To get to the uterus my doctor had to insert a very slender straw-like tube through my cervix. The tube appeared to be less than 1/8 of an inch and I thought it wouldn't be that difficult. My cervix disagreed and was closed up tighter than a clam. It refused to let anything get through. Even the misoprostol (the abortion pill) didn't seem to have any effect on my cervix. My doctor said it probably had helped a little but she still couldn't get the tube through the cervix and into my uterus.

This meant the big needle came out, with the local anaesthesia. Just the idea of what appeared to be a six inch needle going inside of my vagina to get to my cervix was unpleasant. There was a quick pinch with the needle, then it was over.

Next came the tube again. Even though I'd had the local, that tiny tube cause intense pain when it went through my cervix. It was the worst cramps that I've ever experience as my cervix seem to go into convulsions. I could hear the suction as tissue was sucked from uterus lining (which now fills my uterus). Fortunately things went well and there was plenty of tissue removed for the biopsy. There were a few tears, but I got through it.

Even after the tube was removed, I still had cramping and it took a few minutes before I could sit up again and breathe normally.

I'm writing this because what I read online didn't match what happened to me. Every article said there might be a sharp pain or some mild cramping. Of course, the fact that I've never born a child and that nothing has ever passed through my cervix is probably what made my pain a little more intense. It was only for a few minutes but it was very uncomfortable.

Fortunately, I have an amazing doctor. She's extremely kind and understanding and reassured me that what I felt was completely normal for someone who has never had a child. She also told me she was going to be in Seattle tomorrow and she'll call her friend in pathology and ask them to move me to the top to get the biopsy results. Hopefully by tomorrow at this time I'll know something.

I'm fairly confident that it's not cancer. However, I read this morning that a woman that is more than 50 pounds or more overweight increases her risk of endometrial cancer by ten-fold. That means I'm ten times more likely to get this cancer. However, even if it is cancer, I'll beat it.

I have the biopsy procedure today

Today is the biopsy of my uterus to check for endometrial cancer. I've already decided I don't have cancer and this is just a precaution. You know, positive thinking will make anything bad go away. I can't tell you how many of my friends, who mean well, keep telling me to think positive. It sort of makes me giggle. Like positive thoughts can wipe out cancer.

Regardless, I really don't think I have cancer, and I'm only having the biopsy because my doctor recommended it. Probably another unnecessary, expensive procedure to cover their backside. I think a lot of these procedures the doctors do are so they don't get sued later down the road in case there is something wrong. I guess better safe than sorry.

I'm more worried about the two little pills I have to insert vaginally in about two hours, six hours before the procedure when they insert a thin tube up through my vagina, through my cervix and into my uterus. Then a machine will suck out some cells out of the uterus which will be sent to the lab and biopsied. I watched a gross video on this last night with a real person. Looked icky, but didn't look too painful.

What is more disturing are the pills. I picked up the prescription late last night. I had totally forgot about the procedure today. Thank goodness for my 24-hour pharmacy.

After watching the youtube videos on "uterus biopsy" I looked up the medication, Misoprostol. It's an abortion pill! It's used to terminate a pregnancy by starting labor. It's also used to induce labor in the second and third trimesters. I vaguely remember the doctor telling me on the phone Friday afternoon that the biopsy will be "uncomfortable" with a lot of cramping. I didn't think much about it. Now I'm feeling a little nervous, but I'm sure it won't be that bad. I've had some pretty severe cramping these last two months from the endometriosis so I'm use to pain.

Other than last night when I was fretting about going into labor today, I had a great weekend. The weather was spectacular Saturday and Sunday. It even got up to 71 degrees yesterday. It reminded me of that old Perry Como song, "The bluest skies you've ever seen are in Seattle". It was gorgeous. I spent most of Saturday and Sunday working in the yard. As much as I complain about my soon-to-be-ex-husband, he did do a lot of yard work (soon is in November when the divorce trial is set). Of course, when you don't have a regular job and a lot of free time...okay, I won't go there.

I gave up on the two gas mowers. I couldn't get either one to start. When I reached my maximum frustration I drove down to Home Depot and bought an electric mulching mower. Quiet and no nasty gas and oil business to deal with. Super easy to start and it ALWAYS starts. I haven't done the mulching yet, but used the bag. I thought the grass was too long to mulch. It's the best mower ever! Black & Decker MM1800. Better yet was the $199 price tag. It also doesn't weigh a ton like the old mowers. Love it!

I pulled a lot of weeds from the flower beds (some of the biggest dandelions I've ever seen) . I have plans to plant the plants I want in the back yard. Over the years my husband had managed to destroy or pull up most of my perennials. He said he thought they were weeds. We had a lot of fights over the years about my flowers. I had a lot of gorgeous perennials in back but now the only two things left are the giant bearded irises and one Bleeding Heart (which doesn't look healthy this year). It makes me sick because at one point I had at least twenty different varieties of perennials and it was so pretty in the back yard. Now it's become a hoarder's yard, filled with junk. I have a lot of work ahead of me (more trips to the landfill).

I took my sister to see the G.I. Joe movie yesterday. Not exactly an Easter Sunday type movie, but it was pretty good. Lots of action, which I know my sister likes. I wasn't feeling that great yesterday. Maybe it was all the yard work over the weekend, but I was out of sorts yesterday afternoon.

That's it. Another hour or so, and I insert my abortion pills. Fun times.

What can happen when you're obese

It's been a tough week. Ha! What else is new with me? Every week seems to be a tough week. Now a health concern on top of everything else.

I had the CT scan on Tuesday and was told it was a large fibroid and an ovarian cyst on my right side. The gynecologist was concerned I might have ovarian cancer so she ordered a ultrasound yesterday.  I had the ultrasound and the technician showed me  the screen. We could see the huge fibroid filling up my entire uterus. It grossed me out.

My gynecologist called me at 2pm and told me the good news is the ovarian cyst doesn't look like cancer, however, my fibroid isn't a fibroid. It's endometriosis, where the lining of my uterus has become so thick that it's taking up my entire uterus.

Monday I'll have a biopsy done where they'll stick a tube up through my cervix and into my uterus to get cell samples. That doesn't always work, and if id doesn't then a "scraping". Even if it's not cancer then she needs to know what is causing the endometrium to grow out of control. This is extremely rare in postmenopausal women.

Google has told me what caused this medical condition. It's on every "postmenopausal endometreosis" website I visited. The number one risk factor is OBESITY. I have the next several risk facts as well, but the most shocking and hard to handle one is obesity. That was in my control. There others were out of my control.

I also looked at my medical history on my clinic's website. I signed up for it yesterday so it was the first time I've looked at it. There it was, in 2004 when I weighed 240 pounds. The words hurt.

2004 MORBID OBESITY

I know I'm fat, obese, morbidly obese, but to see it there in print where someone typed it in, (in all caps -- nothing else was in all caps), it was like a kick in the head. I remember the doctor too. A tiny little Asian woman. I remember the conversation we had about it. I remember immediately, within a couple days anyway, joining Weight Watchers and losing a significant amount of weight. Now I've gained most of it back. Now I'm paying the price with my health.

I screwed up. Big time. This is my fault. The fact that I have to have a complete hysterectomy. Even the fact I might have cancer. I did this to myself. There's no one else to blame. I knew the risks of being morbidly obese. I thought I could get away with it. I was wrong.

I'm over the initial shock of the whole thing. I got the news yesterday. Got angry at myself, but it's too late now. The damage is done. If it's cancer, I'll deal with it. If it's not, then it's just a simple hysterectomy. Not a huge deal.

Either way, this is an eye opener for me. I'm another statistic of what happens when we let ourselves get obese. I suppose I'm like a smoker that doesn't think they'll get cancer. I won't happen to me!

My immediate goal is to start on a really healthy eating plan and exercise. I've let that slide lately. Now that I have surgery in my near future I know I won't be able to lose much weight before the surgery, but I can at least get on a healthy eating track.