Sorry it took me awhile to get to this post. I intended for it to be one of the first on this blog, but I wasn’t quite ready to tackle it just yet.
Thursday afternoon I “attended” my first support group for people who have peritoneal mesothelioma. Because it is so rare (and because lawyers are chomping at the bit to get a client who is suffering from this disease), the support group has to be done over the phone. A few hours before it begins, Mary – the Nurse Practitioner who has spent the last fourteen years of her life treating and advocating for this disease – sends an e-mail with a phone number to call and a code to get in. People from all over the U.S. who have this disease call in and we talk about where we are in our fight, medicines we are taking, and whatever else is generally on our minds. Five people called in. Five. Does that tell you how rare it is?
I was first diagnosed about a week after my surgery. For those of you who don’t know, a large tumor was found near my liver on February 8, 2012. A CT scan on the same day showed another one near or on my ovaries. My general physician, Dr. R., decided to send the scans to my OB, Dr. A., because he did not normally handle female issues. After looking at my scans, Dr. A. knew this was larger than he could handle, so he sent them to Dr. S., an OBGYN Oncologist at a teaching hospital about an hour and a half away. I was not able to get in to see Dr. S. until Feb. 22. By then I was in so much pain that he immediately admitted me into the hospital and scheduled surgery for the next day. (There was, of course, a mad scramble at that point, as my mom was watching our son but wanted to be with us. My amazing in-laws drove up, picked up my son and a bag of his stuff, and then proceeded to completely rearrange their schedule for the next ten days – which is how long I was in the hospital.)
Anyway, Dr. S. was straight with us that I was going to lose my ovaries, but he asked if we wanted him to leave the uterus if it could be saved. (At this point we were pretty sure it was ovarian cancer.) Obviously, all I know about the surgery is what others have told me. Here is what I have gathered: Dr. S. started the surgery while my mom, dad, and husband waited in the waiting room. Every so often they would get a call updating them on the progress. The first call informed them that the uterus could not be saved. This was devastating news to my husband, as we always planned to have more children. A few hours later, another call was placed letting them know that this was much more extensive than we originally thought. I am not sure how long the surgery lasted, but I do know that in the end a complete hysterectomy was performed. On top of that, they also had to take my spleen, my appendix, and my gall bladder. Another surgeon had to be called in to make the decision if the liver could be saved, because the cancer had attached to the outside of the liver. He was able to peel it off the liver without having to cut, and all the surgeons spent many hours getting every single nodule they could find. This was extremely difficult, as the cancer was very diffused throughout my abdominal cavity, but they feel like they were able to get everything they could see. I later found out that this was called “debulking” and is a traditional part of the treatment for peritoneal mesothelioma, if the patient is healthy enough for surgery.
After the surgery, I had to stay in the hospital for eleven days. It was very, very major surgery and I was lucky to have as few complications as I did. Every day after the surgery, my doctor would come in and say that they did not know what type of cancer we were dealing with yet. Finally after about a week, he said, “We know what it is.” He told us it was peritoneal mesothelioma, and my first thought was, “Why do I know that word?” We don’t have cable, and only watch a couple of TV shows a week, so it was not immediately clear to me that this was being advertised on TV. He went on to explain that there is a difference between peritoneal (of the abdomen) and pleural (of the lungs). And that was it. He did tell me that he had only seen four cases in his twelve years practicing, but no one told us anything else. I was still coming out of my fog that is surgery and lots of drugs, so I didn’t question much more. I was just happy to have a diagnosis. I found out later that my family was not like this. They immediately took to the internet. And freaked out. If you don’t already know, most of the websites out there are run by lawyers and they are extremely bleak. By the time I was healthy (and mentally ready) enough to want to look, my mom heavily discouraged me looking up anything on the internet. And let me tell you, there are no books out there about this.
So pretty much, I spent the next couple of months in near-ignorance, lapping up anything any doctor or nurse would tell me and counting down until I could get to MD Anderson Cancer Center where they actually studied this disease. When I finally arrived, Dr. T. put me on the right track to find (correct) information and answered every question I could think of. Here is what I now know, both about my disease in particular and the disease in general.
My particular disease is extremely aggressive. When my debulking was done, it was determined that it had already metastasized, or spread to other organs. It was determined that I was already Stage III, or “locally advanced”. (No one has told me this, but it my belief that the only reason I was not classified Stage IV is because it had not attacked my lymph nodes yet.) It was also determined that it was sarcomatoid. The best definition I can find for this is: Sarcomatoid, which makes up about 7-20% of mesotheliomas, has a very unpredictable pattern or nature. Under the microscope, it appears like spindly cells which look like supportive or connective tissue. It is the least common variant of mesothelioma. If you go to some of the websites created by lawyers, you will see things like “Generally, patients diagnosed with sarcomatoid mesothelioma have a poorer prognosis and experience little response to treatment.” and “This form carries the poorest prognosis in comparison to other cell types and is often labeled as the more aggressive type of mesothelioma.” Can I just take a minute right here and say that I really, really don’t care what the lawyers have to say about sarcomatoid mesothelioma? They are trying to get clients, and they did not attend medical school. Beyond that, I have faith. I believe that God is going to get me through this. He can do anything, and I am totally just along for the ride. What He chooses to do may not be what I expect, but let me tell you there is nothing like a cancer diagnosis to remind you that you are not in control – He is!
Back to mesothelioma in general. Because this is such a rare disease, a lot is not known. Dr. S. told us he thought it was a genetic abnormality. Dr. T., however, who specializes in this disease, absolutely believes it can only be caused by exposure to asbestos. She was very firm with me about two things when I saw her – that I join a support group and that I hire a lawyer. Not because I need to sue anyone, but because I absolutely need to know where I received my exposure, so that this can hopefully help others from going through the same thing. (Also, before anyone contacts me offering information or a lawyer, I have all the information I need and I have retained a lawyer. We truly struggled with this, because I have no desire to sue anyone, but Dr. T. is right. We really need to know where this exposure happened, and lawyers have the best resources to find out. This is probably all I will say about this, because my focus is not on this, but on getting well, serving the Lord, and being the best mama/ wife/ daughter/ sister/ etc. I can be.)
Now, I never thought I would ever become an advocate about anything, but sometimes life throws things at you and you can sink or swim. Here is what I am learning about asbestos and mesothelioma. Asbestos is not just one material, but actually six separate naturally occurring minerals. It has been widely used as an insulator. Here is what blew my mind: did you know that even though it has been known since the early 1900s that it can cause cancer, it is still not illegal in the United States (or Canada) to use asbestos in construction? Think about that. A house built this year could conceivably still have asbestos in it! Crazy, hunh? No one knows why some people who are exposed contract meso (or lung cancer or asbestosis) and some don’t. Right now, it is thought that it does not matter if you have prolonged exposure or very little exposure. In my case, we have racked our brains and cannot come up with a single exposure. My parents have mostly worked office-type jobs, so it is probable that they did not ever bring home the fibers on their clothes. None of the houses we lived in had any asbestos that we know of. The best bet is probably in the school I attended as a young girl. (Did I mention that it typically takes 20-30 years from the time of exposure to the time the meso shows up? I am 31.)
Also, because meso is such a rare disease it does not receive nearly as much funding as other cancers. There is a chart here that illustrates the lack of funding pretty clearly. It shows the funding per cancer, the deaths per cancer, and the “funding factor” relative to meso funding. The word that best comes to mind for me is tragic. As someone fighting this disease, I obviously want there to be more funding. We need to find a cure. We also need to make asbestos illegal. No one should have to go through what I am experiencing. I don’t plan to do much advocating this year – I plan to focus on getting well – but I hope that this blog will help educate others.
Okay, off the soapbox for now. I hope I didn’t get too much off track and that I explained things clearly. If there is something you still don’t understand, please feel free to ask me any questions you want. I will do my best to explain or find the answer for you.