Knowledge is Power

…at least I think it is.

When I am stressed by a seemingly insurmountable problem, I start looking for as much information as I can locate, hoping to find the best solution, but barring that, illuminate the dark, to make the unknowable known. I am not be afraid of something I know.

But I forget that many people do not deal with stress this way. They do not want to know what I just found on the Internet, and will tell me to stop looking, “Just don’t look!” but I can’t stop.

Partly I think they fear for me, for my emotional well being; some of the information I have found is dark and scary, numbers that definitely do not seem favorable, gruesome pictures (even I can not look at these,) and personal stories that too often seem to end badly; but I think they fear for themselves as well. As long as there is no proof that boogie man is in the closet, no photographic evidence of the monster under the bed, there is no reason to fear and they can happily whistle as they pass the graveyard.

But I can’t, I have to know.

There is a lot of good information about cancer out there and quite a bit about sarcoma, not so much about angiosarcoma, even less about deep tissue angiosarcoma, and if you google “angiosarcoma of the broad ligament,” you will get nothing, (or one of my blogs, depending on whether or not google has found me yet,) but even the lack of information speak volumes. The numbers in the few studies I have found are so small, and most of the participants with more advanced cancers that it is difficult to see anyway that they apply to me.

The odds of a person being diagnosed with angiosarcoma, are infinitesimally small, but for me that has all changed, there is a 100% chance that I have angiosarcoma. Now I need to do everything I can to increase the numbers in favor of my survival.

I plan, not just to defy the odds, but to define them. In order to that I have know what is under the bed, no matter what scary thing might be lurking there, but I don’t have to tell anyone else what I found.

Had, not one, but two doctors appointments this week. They are getting every thing ready to start my radiation treatment next Friday.

I will be driving forty minutes each way, 5 days a week, I get weekends off, for seven weeks. My plan is to try and schedule late in the day so I can work for Mrs. Woods in the morning and early afternoon. She needs me, I need the money, and I need the time I spend with her, she helps keep my moral up. I have only seen her in a bad mood one time and then she was sick and yucky feeling, completely justified for being in a bad mood.

The radiology people think everything will go off with no problem and I am hoping for the same.

I spent today getting ducks in a row, doing all that kins of planning everyone should always do, you know, in case you get hit by a bus. Mine has a big red cancer sign across the top of it and I am trying to out run it, but anyone can get hit by a bus.

I did have any life insurance at the time I was diagnosed and as you can imagine no will insure me now, I spent the morning meet with a man at local mortuary, make the necessary arangments in case of the worst. It may sound morbid to have done it but it is one less thing that I have to worry about. We put together something very nice but still affordable. I will not be riding to the cemetery in my old pick up after all.

I am so enjoying feeling good again. There were times when I thought that would never happen. What a blessing!

Thank you to every one who has been praying for me. I means so much to me. I believe there is unfathomable power in prayer.

Scans and Doctor’s Appointments

I think my appointment and MRI went really well. The MRI did not show any sign of any cancer. My doctor asked if I was feeling rare today. Oh, he is such a funny guy!
They now believe that my tumor was  from the broad ligament  that supported my uterus, rather then the blood vessel in my pelvis. I am going to start radiation but still need to meet with the radiology oncologist and get that set up. Now the plan is that after the radiation I am supposed to do chemo but we are still working out the details of that. I showed The doctor a clinical trail they are doing at Mayo and he says I am a good candidate for it, but that he is in the process of trying to get my insurance to approve the medication (Avastin) for me at U of I. He would like to use it in conjunction with taxol and Doxorubicin (I think.) He said if he can’t get it approved then we will try to get into a clinical trail. He seems to be really upbeat and think we will have a good outcome with this. I have not felt so optimistic since I became ill.

Searching for My Inner Ant

I am a grasshopper.

I did not intend to be a grasshopper and I certainly don’t think the world owes me a living! I always thought I would be an ant. Someday I would just get it together, miraculously become organized and join ranks with my fellow ants.

It never happened.

Now that I am messing around trying to get all my ducks in a row, I really wish I was an ant, this stuff should have been done years ago. Instead the winter wind and cold are just around the corner and I am finally realizing that summer can not last forever. Do I have enough time to get everything done? Do I have enough time to still do a few of the fun things I want to do? Should I read a few more books, go scuba diving, and play games with the kids or do I need to spend all my time chasing these stupid ducks?

I am going to prioritize the ducks, kick a few of them out and go scuba diving anyway.

I appreciate the ants. I read books about how to be an ant. I try to emulate the ants, but I am still a grasshopper.

I can only hope that, like in the cartoon, when the time comes, the ants will still want me.

I Have a Primary!

I have spent the last two days talking to doctors at the university hospital. Apparently I “won” the cancer lottery, I have a retroperitoneal  angiosarcoma. Sarcomas are rare soft tissue cancers, about 6000 cases a year here in the US. About 600 of those 6000 are angiosarcomas. Who knows how many of those are retroperitoneal (which pertains to location.) Oh lucky, lucky me. I have always been unique but this is going to the extreme! With odds like this I should buy a real lottery ticket.

Good News

I have a primary, it is better to know what you are fighting.

My new Dr.  is a sarcoma expert.

I do not have to do chemo now.

I had not cut my hair.

I can send the wig back.

50% of people with this type of cancer live 10 years or more. (per my doctor)

Not so Good News

I do not want to talk about the other 50%.

I will have to do radiation everyday for 6 weeks.

The mass may come back…

…or appear somewhere else in my body.

If we do more surgery I risk losing a leg…

…or something worse.

I have to start shaving my legs again. (at least I still have two of them.)

I gave away all my hair coloring and am really looking grey.