Monday, September 29, 2014

WOW 21

It is hard to believe today at 5:33pm 21 years ago I was holding a baby, and then I blinked and he became a man. I am so happy to be here to have had the chance to say I love you, hug, and smile and see the smile of my son, today. That makes today special.
So we got rid of the lymphedema in my upper left arm and I went a couple days without the sleeve, guess what got it again in the lower arm. I didn't even notice it, my pcp picked up on it. So back into the sleeve, it's ok it is not uncomfortable actually it feels good in the sleeve.

We now have a flagged message for treatment in the emergency room and with the local EMS, if and I hope it never happens again, I have another spasm that is not controllable at home, they will know what to do for me. The biggest issue for me is that besides muscle relaxants I was getting a lot of narcotics that suppress my own bodies desire to breath on top of the fact it is working with one lung to succeed. Now we have a plan in place, that I hope will work.

I had an incident after the airport nightmare on Friday. I ended up doing to much walking and yes my luggage had wheels but it was still effort to pull. By the time it was all said and done, I was in spasm but we caught it early followed the protocol and where able to get it down. I ended up really tired and sore, nothing a couple does of sleep will not fix, LOL.

It is hard when you have something rare to get good care, it really comes down to being pushy and keep looking for answers. I have accepted that I will get blocks OK, not the end of the world. Knowing that doesn't mean I will not keep searching for answers that carry a lower risk factor than repeated neurectomies. 

Later this week, I have a consult with a general surgeon we are all kind of on the fence about doing a port. There are risks to getting one, and risks to not having one, and really no clear answer either way. You have to love it when one doc says ask this doc and that one sends you back to the other. At least the NP offered the most advice.

More on that and the crazy life and times of Jenn 

My son :-)

Tuesday, September 23, 2014

Updating while the word around us blows up

There are times you see the news and think, cancer...least of my problems. I live in a world full of people who think violence is the only answer along with attempts to regulate behavior by writing more laws. Of course that comes with head masters, bosses, fascists, dictators, well, you know people that are suppose to be better and smarter than the rest of us. Simply put, it is nothing more than plan old fashion BS.

While at Dana-Farber today my eye caught the TV talking about dropping bombs on people. Are people really that easy to win over, do you really think that only bad guys are dying. All around the globe all this senseless death when people like me have had to struggle just to live to see another day. Yet these "smarter" than us people tell some 19 year old kid to go kill people, never in most cases having been on the field of death themselves. Never held a dead baby your people just killed in the name of freedom and liberty, really? It makes me sick and even stronger in my resolve to live my life as I choose, and to continue to do so while daring greatly, failure will occur, but success is just a matter of time for those with the tenacity to stay in the fight for REAL freedom and liberty, not the one side news reports you get on most stations. Try internet radio or blogs, it is interesting to read stories and events by those that lived it, not 50 times removed in front of a bunch of cameras and suits.

As for me, we are staying the course. An emergency plan has been developed to follow in the event of spasms. My lymphadema has gone down, a few more days and I can try taking off the compression sleeve, so yah me. The docs are still figuring out what is best for me to have a port or not to have a port that is the question. So have the cancer sugeon's opinion, waiting for oncology's opinion, have my primary's opinion, and the my anethatist's opinion. I figure we will have this figured out by monday when I see my primary anyway.

Have an important trip to make soon and I have the honor of representing the nation of thousands of women across the country who value their "Basic Right to Self-Defense".
Find out more via 2asisters.org

Wednesday, September 17, 2014

Realization = solution

One of the issues that has plagued me for over a year now, is cabin fever. The same four walls and most of the time alone. It is not any one's fault and some of that time is free for me to take a nap, listen to music, or work on something I need to do.

The same four walls no matter how much you cover then, are still the same four walls. At times they seem endless and other times closed in, but the same. I realized yes I need to rest but no one specified a location. So why not work on the part I can control. That has already lead to some fun and I look forward to the next adventure, yet unknown.

I had friends visit today and they gave me a salt firearm to kill flies with, I thought I would rip a stitch laughing. It is awesome thank you so much Kevin and Carl for your gift, your hearts, stories, and smiles. I look forward to a movie night, with popcorn :-)

I have spent time with my friend Rae and with my BFF Chris and Raph. We had a lot of fun and sang, enjoyed Domi Desserts oh what a special treat. Domi you should have come down and joined us. Next time sing along has to include you. I will not accept no, that is just not acceptable and it is for the good of the whole community that your positive nature be share...ok... pleeesssaaaeee with sugar on top?

What I realized is any four walls can provide rest, but not all can provide company, laughter, hugs, and human contact. I think I will continue to look for this, and yes I started a go visit Ken fund, might take a bit, LOL  The solution has lead to couch surfing, guest rooms, late nights laughing and singing...so much and worth it all.
Moment to Moment ~ Just Live !
Hugs to all and smile.....it's worth it!