Monday, September 12, 2011

It's Almost Like A Hangover, LOL!

I got to a lot of things the last few days and life had a bit of a roller coaster feel.

Now it's Monday and there are things to do....but I am having a little trouble getting rolling.

But I was up at 8 am to move the rental car - thank you Hertz!

And I have my sheets in the washing machine because there was a smear of chocolate on my pillow case - the sign of a true chocoholic.

I should go back on Atkins today. Especially since my Dad is feeling like it too. Always easier when the biggest snacker in the house is with you. Jennifer went on just as I fell off the wagon, so that would make it easier all around too. I have a group-on or living social voucher for a gym nearby. There are so many gyms, I could go a few months just sampling. I think a combo of the good weather and the down economy is what's sprouting these good I may as well benefit.

There is a lecture at the Kennedy Library tonight and if they still have space, I may go.

My Marine and I saw "Apollo 18" Saturday night in my new favorite theater. Island Cinemas in Middletown Rhode Island was reasonably priced, clean, and on a Saturday night, there were three other people in our movie screening. It's not like seeing it in IMAX or CineBistro, but for your average movie it was fine, good sound quality. Good sound is important when you are there with the King of Artillery. The movie was ok. It had some scary, jumpy parts - I love that - scare me, don't just gross me out. Although it's hard to give in and enjoy the scariness if your date is making fun of you constantly, lol. I'm not one to spoil movies, so I won't tell you why I didn't like it. But overall, entertaining and you couldn't beat the company. And on a positive note, my hamburger club at Coddington Brewery was AWESOME. I love people who will still let enjoy a "death sentence burger", you know, a little pink.
So I got home a midnight just like a good little Cinderella. I knew I had to get up crazy early. So I went right to sleep, right? Wellllll, not exactly. I turned on the laptop in bed. It's a big no-no. I'm very near forbidden to have the laptop in bed, but I do it all the time. The other half of Team M refers to the laptop as my lover because I sleep with it so much.

So I had a hard time getting up Sunday and barely made it to Cambridge Common in time to see the runners leave in their red shirts. I'd like to let you think it's because My Marine kept me out so late and say ......"It's not my fault!" But it wouldn't be true.

I followed the United We Stand 9/11 "Moving Tribute" Boston down Storrow Drive - in a car, lol - and took pics along the way. however the bulk of them are really dark because I was shooting from sunny places into shadowy places. I really need a tutorial on Dad's camera. People used to complain about cell phone pics on the blog and you must admit, these are much improved....but could be better.

After the run concluded, I walked up to the State House for their ceremony. Well done, understated & respectful.

Then I dashed down to the Charlestown Navy Yard for Old Ironsides observance.

I had planned on going home, eating, showering and heading over to the service project being run by Massachusetts Military Heroes...........but I made one mistake.

When I got back to the house........I put my head down for a minute on the couch. Bummer. I was out for hours.

I barely woke up in time for the earlier-than-usual airing of Pundit Review Radio. Followed by MIDRATs.

So it was an early night. And as I reviewed the weekend, I concluded that I could have done without the Multiple Myeloma conference on friday. As frequent readers know, the bulk of my problems physically and mentally have come from chemo and not from the actual cancer. So I chose the breakout session "Managing toxicities".

Now first let me say that this was a very nice event at the Westin Copley. It was free for me and there was a lovely lunch. Many well intentioned people at the MMRF pulled this together to educate the MM patient population. I appreciate that, truly. Without doctors in this field and drug companies doing/sponsoring clinical trials I would be dead already. Some doctors and researchers and patients enduraed all kinds of things so my oncologist Dr. Miller would know how to push me into remission. Not an easy task with a refractory IgA lambda.

The keynote speaker was Dr. Richardson from Dana Farber. If I correctly understand their heirarchy there, he is directly above Dr. Schlossman, the doctor I rejected in favor of going with Dr. Miller at Tufts/NEMC. you can read about that circus here.

Dr. Richardson was also the speaker in the smaller breakout session on toxicities. They talked a lot about PN, which is a huge problem in the MM community. There were several back and forth conversations, but one in particular sank me.

Let me back up a little. People who care about me (and I appreciate you all) try to read up on Multiple Myeloma. They see all the good news about treatments and SCTs that push people into long durable remissions. That's great. But those people are IgG patients. They are quickly pushed into remission, they are the drug success stories, they have the 10/15/20 year remissions. This topic was discussed at the conference. That a patient can be pushed into a long successful remission and when it ends they can do it again. Subsequent transplants aren't as long, but hey, if you have one that lasts 20 years and a second that lasts half as long.....that's pretty good.

But I am IgA. My groups average is 2 years. and it's harder to get there. So you can see why I am not as excited. Hey, it is what it is. And I am ok with that most of the time.

During the lunch break, I went down to the bar and got a Stoli Cape Codder. I'm not supposed to drink, but the two I had during the Conference are the 3rd and 4th ones I've had in the last 13 months, so bite me.

I also had Hershey Nuggets in my Route 66 tote.

So...that was my mood heading into the breakout session -

Now back to these interesting discussions on toxicity with Dr. Richardson. He was by the way very nice and engaging and helpful. He seemed to care a great deal. I understand a little better why people would endure the circus that is the Dana Farber Meloma Clinic to see him.

He was speaking with one man and mid conversation, the man pointed out he was not IgG, but IgA. Dr. Richardson said "Oh, well....", his expression clouded over, the smile disappeared. Then he quicklyrecovered.

I put the drink stirrer in my vodka and cranberry and used it like a straw.

When I left I got a walk in appointment at an Aveda Salon for a fabulous massage, thanks Group-on.

Conclusion, I shouldn't have gone.


elle said...

I'm sooo with you on the "scare me but don't gross me out" movie thing. Sometimes I can't even watch the tv commercials for the gory movies. What happened to good ol' suspense?

Yer Marine said...

Grazie, m'lady, for the kind words. The company was delightful, the movie, mediocre. (We already agreed on that one.) You looked terrific, and don't need a horn or a trench coat.

Thanks for making the trip. A grand evening!!!!

tim's wife said...

UGH, I can see why you needed the "fortification" to listen to this breakout session.I'm a chocoholic myself. My hubby, Tim, is not the support group or information grabbing type when it comes to his MM. He prefers to block it out of his mind and let me research and network. There are sometimes things said at support groups or seminars that I am glad he is not hearing, due to what you describe here, that GULP, "just peachy" moment of hearing bummer stats. BUT, I have to say, you know how everyone with MM responds differently. Tim may be IGG but he got NOTHING positive from his transplant and was dx'ed with an IGG of 10107. Despite very bad omens, in more than one doc's opinion, he is doing well AND, this is my main point, we have a friend that did his transplant with Tim who is IGA. He DID get a remission from it and when he came out, he went on Revlimid and has been doing very well on that for a few years now. In general, IGA may be trickier, but I know of several IGA'ers who have lazy MM and are still doing well YEARS into this whole MM rollercoaster. Despite how much docs try to research the aggressiveness or non-aggressiveness of different sub-types of MM to fine tune treatments, there are SO MANY people who "break" these rules they try to make, it's almost useless.

BostonMaggie said...

Elle, we'll keep looking for the right movie, but I fear we may have to go back to t he maser, alfred Hitchcock.

YM - not surprising, we always have a good time. Bonus! You didn't add any books to my reading list.

Denise - You make good points & I hold them close. Thanks.

Yer Marine said...

Oh, but Maggie, I did.

"A Court-Martial at Parris Island".

I made it optional. So I know what THAT means.... :)

Kanani said...

I know you are IgA and it's always been like a stab in my gut when I take in the timeframe... so I don't. I think of having such a great time with you, and your energy and fun. And that's how you will always be to me.

Okay, sad stuff over.
So glad you went and saw the run. I loved the picture of Sue, and I will photoshop it so that it stands out a bit more. Then you can post it.

As for Atkins.... MY APOLOGIES for making you fall off that diet. You have until I return in February to be on it, and then I will expect to go to Modern Pastry again!

phrank said...

I do not know you. Have really just started to read blogs and really just started posting on some. It is hard to be upbeat all the time. Yet sometimes it feels like that is what is expected of you. Hard to let down your guard around people, to trust even your family. You don't want them to see you be weak and afraid. You were raised YOUR A MAN but inside you cry out I am afraid. I am grateful for you written words.

Stella said...

Chocolate is good for you... stay addicted...

Chocolate causes certain endocrine glands to secrete hormones that affect your feelings and behavior by making you happy. Therefore, it counteracts depression, in turn reducing the stress of depression. Your stress-free life helps you maintain a youthful disposition, both physically and mentally. So, eat lots of chocolate!

Elaine Sherman, Book of Divine Indulgences

I don't understand why so many "so called" chocolate lovers complain about the calories in chocolate, when all true chocoholics know that it is a vegetable. It comes from the cocoa bean, beans are veggies, 'nuff said.