Stage 4 Endo. Cancer/MRSA/Rad & Chemo

I journalize a lot on Caring Bridge to keep my friends and family members up-to-date on my Stage 4 Endometrial Cancer (diagnosed/initial surgery: August/Sept 2007 - I was just under 41 years of age). But, I also like Hyster Sisters, because I like to hear other people's stories - good, bad, or indifferent.

I had a long history of Polycystic Ovarian Syndrome (PCOS). I had been religiously going to a gynecologist every 6 months since I was being monitored on birth control pills to try to control my heavy bleeding issues that I've battled on and off since 2003. If I was not so afraid of IVs and surgery, I should have demanded my gynecologist from my old town to just get rid of that darn uterus, but I don't think any doctor wanted to remove all the parts because I was still under 40 at the time - but I had no intention of having babies. So many people just cannot fathom that a woman does not want children, and that they thought I might change my mind. By the age of 8, I knew I did not want babies, and that's never changed, so I guess I'm the weirdo.

Anyway... sometimes I find it hard to believe that my gynecologist who was monitoring me for 3 years (every 6 months), never picked up on the fact that I was walking with crutches and getting terrible Charlie horses in my legs and experiencing fatigue. I told the doc that all of a sudden my legs were turning into rock-hard cement; that the Podiatrist could not figure out why my legs and feet were so painful (even Cortisone shots that used to work for other foot-related problems did not work). Nobody even told me how high my risk for Ovarian Cancer was in a person with PCOS. Granted, my cancer turned out to be Uterine (Endometrial), but it sure took a long time to catch it. After all these decades of research and such - Ovarian and Endometrial cancers are still the hardest to detect in their early stages. The CA-125 blood test is not always accurate, and really is better used on someone with Ovarian vs. Endometrial cancer.

I did love my original Gyno-Oncologist. One of the smartest in the field and so lucky to have had insurance to have access to him and his skills. It did stink that back in 2007, the hospital protocol was not to use drains for this surgery, and I think that it was detrimental to my health, as I contracted MRSA in the huge vertical abdominal incision TWO times (once while undergoing 6 rounds of chemo). I thought the MRSA was going to kill me and not the cancer.

I endured 6 rounds of heavy duty drugs - Paclitaxel and Carboplatin. The platinum in the agent caused permanent neruropathy in my toes, but small price to pay for almost 4 years alive since diagnosis. While it did not get into any Lymph nodes (yet), it sure took over as much real estate as it could in all the reproductive organs! This stuff grows FAST and is sneaky. It really freaked me out at how fast I lost my hair, even though I knew I was going to. Just that when it happened (about a week after my first infusion) - I cried forever. I looked like a freak and felt like a freak, despite all the encouragement people were trying to give me - but NONE of them were cancer patients before, so I did not care what healthy people had to say about my hair.

By the grace of God, I did manage to finally beat the MRSA (took 5 weeks of very aggressively strong IV antibiotic twice a day), and then I could go back to focusing on the cancer portion of the game. I did managed to barely squeak out 2 years of remission, but then I caught signs of bleeding again, and it was all over - back to more grueling drugs of the same kind, and the painful white blood cell booster shots the following day after chemo.

I did get a different Gyno-Oncol (my original guy went on to do more higher up things in the world of Oncology). I like this new guy from the group I have been going to since 2007. Caring, smart, and takes his time explaining/answering stuff (as long as I have a good list of questions on me, he usually does managed to make the time). But, this cancer still has not gone back into remission, and it might never. They tell me that with Stage 4, pretty much all they can do is try to "manage" it as best as possible before it gets to major organs that they cannot treat/radiate.

Right now, I am on a new drug. New to me, but new in the field. I am hoping this Adriamycin kicks the cells into remission this time (and that down the road it does not give me Congestive Heart Failure or Leukemia). I know that they did a Molecular Study on me when they were removing 3 tumors out of my abdomen in January 2011.

I am perplexed though how I was told there were 2 "masses" in my Omentum prior to chemo in June 2010; then they did another CT scan prior to a 5 week (daily) external radiation stint which showed that the chemo did shrink the tumors but I still required radiation and surgery. The Radiologist told me AFTER his treatments that the radiation did a fantastic job and that they were able to expand the radiation field to hit the lower part of the Omentum tissue with radiation and get at the two tumors in question. My gyno-oncologist said it could not be done but the Radiologist did it.

After the radiation treatment, they did another CT scan and found that there was still a mass in my Omentum and that abdominal surgery would be scheduled for the beginning of January 2011 (my body needed rest in between). Turns out that even though I was terrified to do this horrible surgery again (fearing the MRSA and the pain I experienced for 4 months the first time this was done) - but when the doctor went in to remove the Omentum tissue, he saw 3 masses - not 1; not 2 - but THREE! I don't know how the CT scans were so far off base but that was worse news to me. The doc also could not removed some diseased tissue because it might have damaged my bladder and/or rectum because that's how close all those parts are and there was no way I would want to wind up permanently catheterizing myself to urinate or poo. I'd rather die. That's just how I am (sorry to be so extreme for most people).

The good news was that the horrible "bowel prep" that they used to give people has been changed to something a bit more palatable (at least for me). Miralax and Gatorade. Of course I was not fond of having people keep telling me to hydrate all the time after chemo and such with things like sugary Gatorade (as sugar feeds cancer), but this was a necessary evil at this point.

Another great thing is that the hospital I go to, has since made it kind of a "standard" now to use DRAINS in the abdominal walls to help ward off INFECTION!!! YEAH! Instead of kicking me out the door on Day 3 (like the first time) - full of infectious fluids and getting MRSA - they kept me in for 6 days and the drains were working great! Yeah, they were a bit painful, but it sure beat having MRSA again! They took the drains out before I was released, but the smart nurses waited until the very last second before going home to do that - so that I'd get every bit of the benefit.

So, anyone needing this kind of surgery, make sure you tell them you want DRAINS put in, if they don't normally do it as a routine. I felt so much better by Day 3 this time around than I did initially in 2007 when I had the vertical TAH. And, even though they say that you can resume lifting heavier things after 6 weeks, I suggest a lot longer than that. So many people I've heard that have had surgery (for cancer or for delivering babies) - they got hernias from not taking it easy enough.

Good luck to all the Sisters out here in Cyberland. We need to stick together for support and education - you cannot believe how much us "laypeople" need to educate our doctors and health care professionals. But we do. So many of them don't seem to have the time to get current on so many topics like cancer and infections and how to deal with infections and prevention. They don't know a lot about current clinical trials and such - unless maybe they're in a "teaching hospital." WE as patients or potential patients (cancer or other diseases) - we need to educate OURSELVES.