Archive for the 'Cancer' Category

Lastest Developments

I have developed sacral fractures from the radiation. YUCK! Now I have similar pain as when I first realized I was sick. Not as bad as at the end but still no fun. I am taking something for the pain though and can usually stay on top of it. I go to the orthopedic clinic Monday and we will decide what happens next.

Chemo was all over about a month ago. Still no sign of my hair coming back (except on my legs ) and I have lost the last of my eyebrows and lashes.

I am really NOT enjoying the cancer experience.

At least there is good news as well. I have had my first post chemo scans and there is no cancer at this time.

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Counting Down

Tomorrow I go for chemo. After that I have just one more treatment and then I am done until/unless it comes back again.

Treatment has been pretty easy.  I feel good most of the time. The side effects I had were things I can live with. If everyone who does weekly taxol get off as easy as I did it a pretty impressive treatment.

Next I have tests. Lots and lots of tests every 3 months, but I do not think they will line up right, so it might be more like a pelvic and a consultation next week, a CT scan in June and an MRI in August. Then we repeat the whole thing every three months over and over again, for the next two years. After that the tests are done less often, which I find a little scary, but maybe something will change by then so I am not going to try not lose any sleep over it.

Even though most of the time I feel really good.  I still have moments where I feel that I am doomed, that the cancer is going to come back and next time it will kill me. Sadly it is always a possibility. I do not know if I will ever feel safe again, or even if I should. Angiosarcoma is an awful cancer. It almost always comes back. I have found maybe 3 people who have survived their diagnosis over 5 years.

I have done every thing that can be done and now I have to simply wait and see what happens.

Woo Hoo!

My MRI results are in and my tumor is still not there!!!!

This means I has been cancer free since the beginning of October. 6 months with no cancer and NO pain! 6
months since I last tried to work out a good way to kill myself! Six months since I found out that cancer
was causing everything that was ruining my life.

I am so amazingly happy!

3 more chemo treatment to go and I can settle in to the new normal. I can’t wait.
I have done radiation and now chemo with weekly taxol. So far treatment has basically been a walk in the
park, anything is compared to how I felt before surgery.

I have been VERY blessed! I know this is does not mean that it will never come back  but it is not back now and I will take what I can get!

My Doctor’s Appointment

One more day of radiation YAY!

I saw the oncologist today.

Originally he wanted me to do Taxol, Avastin and
possibly Dubroxin.

We looked at study that showed the combined treatment
did not seem to be that much more effective. Of course
there was no angiosarcoma study.

I can not do Avastin here, would have to go to Mayo.
Since, a far as we know, I am currently cancer free,
we will save that experience for later if needed.

The current plan is sometime after Disney I will have a port put in (why am I afraid of that?) for them to administer chemo through, and then start chemo using a medication called Taxol.

At some point in there they are also going to do an
MRI of the pelvis and and a CT scan of (I think) the
chest, looking for possible recurrences and metastasis. (who knew I could spell that!)

Winter Driving

I am good. Just finished my first week of radiation. If there are going to be any side effects they should not start before the third week so I have at least another two good weeks. Hopefully more.

Thursday I drove through the snow for treament. The last 20 miles we were going just 35 mph on the interstate, little cars like mine were sliding in to the ditch all over the place. I did my treatment and it took me 45 minutes to get off campus, I could have walked faster. there is no way I wanted to drive all the way home (60 miles) like that. I called a friend from church who lives near there and she put me up for the night. How nice. I was able to go for treatment early the next day and head for home.

Now I am free until Monday.

One week down, six to go.

YEA!

Radiation

Finally had the first of my 35 radiation treatments. The worst of it is the 45 min. drive up there, once we get to the clinic we are in and out in about 20 mins.

The Dr. believes I will experience some side effects, but not for a of couple weeks yet. I am going to keep working until something happens (hopefully it never does) that makes working too difficult.

Thanks go out to my son and daughter in law for watching the kids during this time. It is a BIG help to me and really cuts down on the stress. Maybe I can could get them to watch my parents also?

Mom and Dad drove me to treatment yesterday and my mom threw a screaming fit at my dad in the parking garage. It was embarrassing and nearly made us late. Mom was fussing at me as we were walking to the clinic, that we should have just gone straight to the door. I kept telling her we had plenty of time when we parked. Plenty of time until you wasted it all screaming at Dad for 10 minutes because he neglected to open your door for you! (but I did NOT say that.)

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.