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how is Don doing

mrsbotch
Posts: 377
Joined: Oct 2010

Where are you Judy? I miss seeing you post

Barb

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Sorry Barb:

Things have been a little busy lately. We are getting ready to head out to Sturgis, SD this week for the big bike rally out there.

Don is still experiencing a good deal of pain and taking pain meds around the clock. After someone suggested a pain patch, I got him an appt with our primary care doc today, who told Don that anything he would prescribe would cause drowsiness. Last week, our primary care doc was on out of the office and this week the surgeon is out of the office. I had also called the surgeon and explained what has been going on and all of the tests Don has had to date, and he wanted the test results sent to him - which Don did on Thursday and got a call from a nurse on Friday that the surgeon didn't see anything on the CT scans that would be causing this pain either.

Anyway - when we get back I full well intend to get on someone's A$$ to find out what in the H#&& is going on with him. This is frustrating and ridiculous. The surgeon may want some other test done according to the nurse and she was supposed to find out what test it was and set it up for early this week - well guess what? Don asked the nurse about it and she something like "Oh yeah, I need to check with him and see about that." Good grief.

I did start Don on spirulina Saturday (it looks terrible and I added some crystal lite to it to make it taste better) - maybe that will help perk him up energy wise and he has began to add protein powder back to his diet because he is losing weight due to sleeping a lot and not eating as much as he should be.

Thank you so much for checking in on him sweetie. I'll get back on here after Sturgis and let you all know how that went.

Hugs and FEC,
Judy

mrsbotch
Posts: 377
Joined: Oct 2010

Have a great time in Sturgis. You guys deserve it

Yes you need to keep on their A&%&% about Don's discomfort. I truly am starting to think that many drs put you on ignore once EC is known to be your cancer. It sucks but it is true.

Love ya and hang in there.

Barb

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

Judy,

I was wondering how Don was doing now that a couple of weeks had gone by. I was hoping that things have improved.

I am glad to hear he is doing well enough to make the trip to Stugis. I know how much you both are looking forward to that.

I will be praying that all goes well on the trip and you both have a great time.

Then, when you get back, hopefully Don's doctors can focus on finding out what is going on.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

bingbing2009
Posts: 179
Joined: Feb 2011

So glad you are making the trip to Sturgis. Maybe it will help to get away and enjoy being with the others. When you get back home, give the docs hell until you can get some kind of answer. Nobody should be in that kind of pain.

Good to hear from you!

Hugs and FEC,
Melinda

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Judy,

You guys are going to trailer the bike for most of the trip out to Sturgis, aren't you? That's a devil of a ride out, but certainly is my favorite part of the country. I've been in the area the week before Sturgis and the week after, but never during. Can't imagine the bedlam of the actual week. :)

You guys have a GREAT time! You DO deserve it! Hope Don's pain ABATEs ;-) for the duration of the trip - and after if possible.

I know I can count on you to be on the Drs' behinds the minute you get home.

Big Hugs & Lots & Lots of Love!

Terry

@Barb - Thanks for asking about Don. I was getting worried that it was something other than just busy lives that had kept Judy from updating us.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

We are very fortunate to have some great friends (there are 23 of us that ride together as much as possible as a group) and seven of us are going on this trip. The couple we are going with have a beautiful motorhome and we are taking the enclosed trailer to haul their bike and Don's bike in. The other three however, are riding all the way out there and sleeping in a tent when they get there.

Don is ok when he is riding on the bike, but when he sits around - the pain really gets to him. We are trying a couple of new things to add to his diet to see if he can get some energy to combat the fatigue or at least even it out. At least he will be comfy in the motorhome.

Not sure how much riding we will be able to do - we'll play that by ear, but would like to see Mt. Rushmore, Crazy Horse and hopefully, Devil's Tower.

Change of scenery will do him good.

William and Loretta: I am going to push/insist on a PET scan but first I think Dr. Reddy at UofM is going to do a barium swallow with a bowel follow through to see if anything shows up on that. If all else fails, we will be talking about going somewhere else and trying to find someone who is interested in finding out what this pain is. We are not just going to accept that they all seem to be ok with this. It is not ok.

I will post any pictures on facebook from the trip and maybe even get a new profile picture for us. I am going to do my very best not to be one of those wild biker chicks you see on National Television (but no promises LOL)

Love, Hugs, and FEC,
Judy

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I try to go West every 5 or 10 years to check the progress on Crazy Horse. I had missed a trip or two, so on my last visit out, I was amazed how much the carving had changed. I SO love that area! If you have the time, a slow ride through Custer State Park - with Saltines for the wild burros - is a MUST. Some of the best scenery in the area. If you are into caving, check out Wind Cave and give Crystal Cave a pass :)

As far as the Barium Swallow, I wouldn't bother, but that's my opinion. Nick started with a Barium Swallow - all that was seen with that was a hiatal hernia. Doc was happy to prescribe an acid reflux med and stop there. Nick's tumor would have been missed if Nick wouldn't have insisted on moving forward with an Endoscope. I won't waste my copay or insurance's money on a Barium Swallow after that experience. Remember - this is only *my* opinion. Others might have received great insights from a Barium Swallow - we didn't.

Be well, Have Fun, and know that we are sending you lots of Positive Mojo for the trip!

Hugs to you both!

Terry

FEC!!!

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Judy, Have fun at Sturgis and I'll keep an eye out for you when watching the different television/internet coverage of the events there. Hope Don is able to enjoy himself and that you guys get some answers and soon about his ongoing pain.

Dave

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Judy, Sorry Don is still hurting. Get on the doctors case big time, when you return. Don knows if he's having pain and it's up to the drs to find the reason.

Enjoy your trip and stay safe,

Sandra

casp42
Posts: 79
Joined: Jul 2011

Have a safe and wonderful trip!!! I hope when you get back they figure out why Don is hurting so much...

Take care and hugs to both of you,

Carolyn

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