Pain

Pain is a funny thing. When you feel it, at a particular level, it takes over your life. Work, play, sitting, moving - whatever. The pain is #1 in your brain. Sometimes, if you are strong, you can "tune it out" but then, zing, it comes back. Since getting back home, we've struggled a bit with getting my pain medicaton just right. During the surgery, the doctors had to work on a patch of flesh inside my hip, next to my sciatic "notch". Between that and the in-operation radiation, it kind've got pretty roughed up. We thought we had it licked after consulting the pain service at MD Anderson, but the drugs stopped working as well as they did in the beginning.

People say "You're so strong to go through this" and I appreciate their complements, but I'm not always stromg. When the pain is at it's peak, and the drugs that used to work, don't anymore, and you're not sure if there is a solution out there (because you're not thinking straight - because all you can think about it the pain). --- you don't feel all that strong.

Thankfully, I have the best patient advocate in the world. Sheila helped me through it and (with some help from our friends) we got an appointment with the local pain service. It's too soon to say we've licked it 100%, but with the new presciption, I'm feeling much better tonight. If you feel pain, keep working on the solution. With physical pain, there are many medications and it may take a while to get the "mix" just right. Keep trying. Tell the docs how you feel. Chances are they can make it better.

It is such a relief. With the pain no longer acting as a "filter" on my experience, I appreciate even more, my situation. I have lived with cancer for 5 years and now, I have a decent chance of beating it. My last lab results showed a CEA level below 1. (this is VERY good news. No detectable cancer in my body). I have been given a new life. Cool.

home

We made it home. Yay. Tired.

m

sc

Just crossed the border into SC. Looking forward to getting home
tonight!

m

Just crossed into GA

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Heading north on 95 just outside of Jacksonville!

Leaving Penscalola this morning...

On the road

We have crossed the Mississippi River in LA!

m

Getting ready to head home!

Saturday my sister & niece drove down from Dallas to visit for a bit. It was really great to see them. We got Chinese for dinner & played spades & talked & laughed. Good stuff. Since our new apartment has two bedrooms, it actually worked out pretty well with them staying overnight. After breakfast this morning they headed back to Dallas. My leg/nerve pain was still not really under control so we decided to swing by the emergency room at the hospital to get it taken care of before heading across the country. The doc there consulted with the pain team and they came up with a better plan to manage my pain situation. I'm feeling pretty good now and we are pretty confident that our new medication will control things well.

Which means Sheila & I are DONE with Houston (for now)! We're packing up tonight and plan to hit the road tomorrow. YAY!!!!!!! We are SO excited about coming home. We miss all you guys, our house, our pets. It seems like we have been out here forever - so much has happened. We'll play it by ear & take our time getting home, but it looks good for us to be there by Thursday or even sooner. We don't want to push my body too far (but we do want to get home). Can't wait to see everyone!!!

Crazy Friday

We were all set for a mellow Friday night... We did a walk around the apartment complex and hung out by the pool for a few minutes. When we got back to the apartment, there was a note from UPS! Fortunately, they had not left the complex and Sheila picked up our package. Marjorie (The classiest lady in Charleston - & a real sweetheart) sent a book from Barnes & Noble. It's a thriller that will be sure to keep me enthralled on the way home. THANK YOU.

Then, the real excitement started. The power went out. Dang. We called the apartment manager & they said the power company was "just here" and probably cut off the power because it was not properly moved over to a new account for our specific realtor. We called her. She was clueless but finally said that we should move into a hotel for the evening. Great. I'm in moderate pain, it's getting dark & we need to move on a Friday night. We called Rotary House & fortunately they had plenty of room. So, we packed up an overnight bag & got going. It was a good think I had some Illumicom flashlights in my computer bag! We got settled in & ordered Pizza & that was that.

This morning, our real estate lady arranged for us to get keys to another unit in the same complex. This one has power! And it's a bit bigger/nicer too. So we're back in a good apartment for the weekend. The incision pain is pretty minimal, but the nerve pain in my leg/butt flares up at times. We'll need to get a good pain control program in place as the pain/healing evolves. I won't be able to start paddling the first day back in Charleston!

One less tube!

Did a special x-ray today where they fill my bladder up with radioactive kool-aid and take pictures. (No, I don't have any for the blog). It was pretty cool. I got to watch everything. Hey, that's my kidney isn't it! So the docs say I have no leaks, so my foley came out today. Wooo hooo. Also got my staples out about 10 minutes later. Big day. Met with my surgeon & oncologist & we're formulating a plan forward. Not sure yet whether we'll do any post-op chemo or not. The book on my situation hasn't been written yet. My doc will pitch it to their tumor board & see what the collective wisdom says. This will be another "recovery" weekend.

M

Breakout!!!!

Today I actually left the apartment complex!! I'm feeling stronger each day & today we decided to go out for lunch. We did a quick trip over to Rice Villiage (where there are LOTS of nice places to eat) and had a light lunch at an Italian restaurant there. My foley is pretty annoying, but if the tests go OK tomorrow, they should be able to yank it out (owwww). We'll also meet with all our docs to work out the game plan from here.

M