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From the beginning: the long story

Posted Oct 04 2009 11:12pm
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.
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