MM Rears It's Ugly Head...

Well, I almost got a full 2 years in remission. Until the end of February when a sore shoulder turned out NOT to be a torn rotator cuff, but a bulge in my clavicle. So I took 10 radiation treatments and have a PET scan set for March 14th. Then I get to go talk to my Onocologist on my birthday to discuss the results and what we need to do next. Sigh.

The thing that is important to remember with MM, is that it's a mind game. With all the new drugs, we are getting longer and longer remissions. Eric Voigt is in his 4th year of remission, I believe. Hopefully this little "incident" I've had will be nothing more than a "bump in the flightplan" and I'll go back into remission for many years to come.

It took me about a week or 10 days to come to grips with this new episode. When you go into a lengthy remission, it's easy to "forget" that you even have cancer. But then something like this happens and you remember how precious and how tenuous life really is with MM.

A few weeks ago, I had to accept a different brand of the Fentynal patch that I wear. Sandoz had recalled a certain lot number of their patches, so for awhile it will be hard to find them. It was a diasaster. Last Thursday I hit the wall. I was in so much pain, I could hardly function. But because I live alone, I had to figure out a way to help myself. I e-mailed my Oncologist, called around town to find a pharmacy that still had some Sandoz patches that weren't part of the recall, then had to drive an hour and half to pick up a new script, go to the independent pharmacy I found in the next town over, then call the insurance company when it wouldn't go through (because of course they didn't want to refill the new prescription because it was too soon) and get home. It was a monumental effort. But within 45 minutes of wearing the new patch I felt 75% better and now, 3 days later, I'm pretty much my old lively self.

It's times like these I wonder what will happen to me when I can't do stuff like this for myself. My sister came out from Vancouver, WA for a week so that she was here for the first 4-5 of my radiation treatments. That was WONDERFUL. But there will come a time, I'm sure, when she may not be able to drop everything and race to Kentucky to be with me. My children are in Arizona and busy with their own lives. I kind of envy those people who don't have to face MM alone. I think the only thing I can do is try to prepare some kind of a plan. I'm not exactly sure what it should look like, but I think it would need to address issues like paperwork, what to do if I can no longer work part-time, who to call when I need someone to be here at home with me. Maybe even who would be willing to be my advocate if I get hospitalized again. That's a biggy, because it's asking a lot of someone who isn't family. But it's critical. You NEVER want to go into a hospital without an advocate. It's unfortunate, but I've found it to be true, that you get better care if the staff knows that someone comes every day to check up on you.

So today, I tried to get a little grounded. I grabbed my camera and headed out. We had a ton of snow on Friday and it's still on the ground. I got a couple of pictures, I think I'll be able to work with. Have a look and enjoy!



God Bless,
Susan