Friday, March 23, 2012

Medical Roller Coaster

I haven't written about my sister's cancer situation much lately because it has simply been too hard emotionally to talk about it. As some readers may recall, she hadn't had a pap test for over a decade, possibly as long as 15-20 years and I suspected it was because of her weight. She suffered from anemia for years and eventually nearly blacked out and it was finally discovered (after much other testing), that she had a large tumor in her uterus that was causing internal bleeding.

Since the initial finding, she has been told various things. You'd think that medical technology would be advanced enough to give proper diagnosis of her issues, but, no. First she was told she had cervical cancer or possibly ovarian. The tumor filled her entire uterus and would have to be shrunk with an intense sequence of radiation treatments (24 in 6 weeks). The news was bad at this point, but the cancer had not metastasized and it seemed that after a lot of suffering, she would get better.

Later, she was told that the tumor may be inoperable and unshrinkable and that she may have to live her life in a disabled state. She was told she had both uterine and cervical cancer. Essentially, she was being told that the best they could do for her was try and keep it under control because it would threaten her life if they tried to remove such a huge tumor. I'm not sure how that works, but I assume they were afraid she may bleed to death as merely touching her to examine her caused her to bleed a fair amount. The doctors haven't exactly been forthcoming with precise details.

My sister was devastated by the news that her life as she knew it was coming to an end if the tumor was not shrinkable. She was told, and this made sense, that her body can only take so much radiation treatment and if the first round wasn't relatively effective, she'd be disabled and essentially take treatment as needed to try and stop the tumor from spreading. She'd never be able to freely move again without pain or risk of bleeding. Absolutely, working would be out of the question. She was already stuck in her upstairs "apartment" (the upper level of my family home) and depressed at her limitations and now they were saying this would be the rest of her life. Of course, the unspoken addition was that, "the rest of her life" would be shorter as holding cancer at bay is always a waiting game. Eventually, it would spread.

I talked to her about this and tried to reassure her that this would not be the end of her life. The truth is that, yes, she would be limited, but her sole purpose in life was not to drag herself off to the job she had held for so long. She wasn't happy in that job in the last year or so (since her hours were cut to part-time) anyway and felt stagnated before. I told her that she had more to offer and that I would help her find it if it all came down to the worst. There was more she could do within whatever limits she would have to live with and I'd be there to help her find that path and start down it. I believed it then and I still believe it now.

After letting her stew on that for awhile, they gave her an MRI which (supposedly) revealed that the tumor was not as large as they thought. Now, they were saying that it was a smaller tumor with fluid trapped above it and looked more operable. They expect that once it is shrunk by radiation treatments, the fluid will drain off and she will experience less pain. Both of us were elated at this information, but I am cautious about reaching any conclusions. It seems that the doctors may be doing their best, but they really don't have a clear idea of what is going on as the story keeps changing.

The lesson I learned from this, and I'm sure others will as well, is that weight shaming is incredibly destructive. It's not as if I was oblivious to this before this awful situation with my sister. It kept me from seeking pap tests for about 12 years, after all. However, the only one who suffers when we give in to it is us. My sister is suffering horribly now for having avoided such testing and, while I still am not sure that she didn't get tested because of her body, I'm pretty sure that is a big part of it.


Human In Progress said...

Seriously, how else to describe it than a roller coaster?! It sounds horrible.

The weight shaming is tragic. I know I have hesitated over doctor's appointments in the past not just because of my weight, but due to embarrassment over the condition of my skin and hair problems.

Wishing the best for her, and very moved by your evident love for her.

Jenn said...

So, so sorry to read about your sister and the medical rollar coaster you guys have been on. I can't even imagine what it's been like.

Weight shaming is horrible. I never got to the point where I was afraid to go to the doctor, but I definitely had a lot of anxiety about going because I didn't want to be told I was fat. So I can see how it gets to the point of avoidance quickly.

Thoughts & prayers to you both.

LHA said...

The word "roller coaster" came to my mind too as I read this....a medical roller coaster, at that. I can hardly imagine anything worse. The two of you are incredibly lucky to have each other and I am so touched by your concern for her. I can only hope my own children can someday be as close and supportive of each other.

Best of luck as you fight your way through this maze of (mis)information. Wishing both of you the best.

Escape Pod said...

I'm so very sorry, for you and your sister. Unfortunately, even when you see a doctor regularly they can completely miss or ignore or misdiagnose developing problems. It's not as exact a science as we'd like it to be (or as they'd like it to be either, I'm sure).

Arwenn said...

I hope everything stabilizes and that the prognosis ends up being favorable. I can't imagine how frusting it must be for both of you to keep getting different information.

Something that struck me is that since you've lost the weight and because you'll be moving stateside again soon you will be in a position to offer aid that you couldn't have given three years ago.

It is certainly a motivator for me knowing that if I was needed by family I couldn't do as much as I would want to.

screaming fatgirl said...

Thanks to everyone for reading and for the kind supportive comments. I'm very sorry for the delay in posting comments and replying to them but there have been some big changes. I'm now back home in America and suffering from some severe reverse culture shock and there were technological issues on both ends (near the end of my time in my former home and the beginning of my time in my native country).

Thanks so much for reading and for taking the time to speak so kindly in your comments. I really do appreciate it.