Tuesday, September 07, 2010

I Am Enraged....Literally!

Today couldn't have been worse.

First, we were late getting there. I have done this five times now. When I am on time, I am in and out in under two hours. When I am late, it takes three. I was at my parents house by noon. Jen was running late, but she was meeting us there. Grace was coming from work. I don't know what was happening in Everett today between noon and half past that involved nine police cars and frankly I don't care. I just know it made Grace late.

Then my Dad drives us to Foodmaster. My sister-in-law works there and she was nice enough to make me a couple of dozen of her raspberry squares. I am not a raspberry person, but I know that they are really good. I wanted to bring them to the infusion room nurses. They are really nice anyway...but I like to do this. And of course flying in from Indiana this morning left no time to play Betty Crocker (by the way, the actual flying part went just fine, thank you Southwest).

So my Dad goes over the Prison Point (Gilmore) Bridge and I start to say something, but let's be honest, he knows way more than me about driving in Boston. Then he heads up Memorial Drive and I say "I would have gotten on the Expressway." He give me the what's-wrong-with-you look. I try again "It's the fastest way to Chinatown (Tufts/NEMC is right on the line between the theater district and Chinatown. Again he raises an eyebrow and says "Who wants to go to Chinatown? I am going to shoot over the Mass Ave Bridge and down to Brigham & Womens."

Ahhh! "Wrong daughter." Jen goes to BI Deaconess MS Clinic right behind B&W.

"OH!" We laugh, he zigs and zags and next thing you know we are over near Mass General and zipping up to Tremont. He whizs around a vehicle that decides to simply come to a stop in front of him so close he laughs "Pull your elbow in, Diane!" He deposits us at the front door of the Floating.

We were 20 minutes late, they are already backed up with the leftover people from the holiday like me - I am supposed to be in on Monday.

I am not in a chair until 2 pm. Jen shows. I get my IV. She b rings three fun size bags of M&Ms. Then my IV gets flushed. I lost a few pounds....all that walking in Florida and Indiana. I get the steroid. They know I want to talk to Dr. Miller & Kate, my NP, but both are busy. You really can't expect much on the day after a holiday. Normally things are much different, so I am not bothered at all. Over all, I like everyone involved in my care, so rolling with this delay is no problem.

After the Velcade we head over to the other side in search of Kate. I need clarification on the medication timeline. I am so ok with how this past round went, I want to start making plans for Vegas for BlogWorld. I know because of the abrupt start and the holiday, I got more "off drug" time than I should have. I think I should have gotten 14 - 16 drug free days and I got 19.

But I need to know, does the 14 day count start after the last Velcade infusion (Day 11) or the last Revlimid pill (Day 14). I want the answer to be after the last Revlimid pill. That would make the 14 days truly drug-free. But I know that the answer may be that the clock starts ticking after the last Velcade infusion. And I can live with that. I had a lot of time to think this last ten days or so. I was alone for a fair piece of it. On busses and planes and shopping and walking and cleaning. I have made my peace with it. I can do 14 days and then have 14 days off. I can suffer, recover and have my adventures.

Kate says it's not supposed to be 19 days.

Or 16.

Or 14.

It's supposed to be 10.

From the last Velcade infusion.

I am stunned. That means the clock between infusion is ten days and the first four aren't drug free because I am taking the Revlimid. And last time I needed 8 days to recover.

I am no math whizz, but the nuns hammered in some basic points and ten minus four is six.

Six drug free days and then back on Velcade.

Do you understand? I will not even have recovered to the point of having adventures in six days. Much less have time to execute and enjoy an adventure.

I stopped Velcade on August 19th. I was not even remotely back to myself until the 28th. TSO & Caro's wedding this past Sunday, the 5th was the best I felt all month....and even then I had to sneak back to my hotel and nap between the reception and the after party.

If this is correct and not adjustable it means, no road trip where I drive to Kansas by way of Philadelphia and friends in New Jersey and Ohio.

I means no trip to the Grand Canyon.

No driving on the Lincoln Highway or Route 66 in the giant soccer mom van with the scarf Kanani sent me rippling across my shoulder in the breeze.

It means no crashing the Pirate conference for which I have ordered a Drink-Ex with some favorite Sailors and USNI peeps and My Marine.

It means no Las Vegas.

It means no sneaking back to Florida and hanging with peeps on the East & West Coasts.

It means that for the next six months (and they told me that no matter what results are achieved, good or bad, I must do it for four to six months) every day will be shitty. Maybe a little shitty. Maybe a lot shitty. But shitty.

In my mind I just keep hearing a heavy prison door slamming shut.

I could not speak to Kate. Jen thought I was just frustrated because my brain vapor locked as it does when I am on steroids. She thought I simply couldn't form words. That does happen to me.

Grace could see I was angry.

I think Kate saw it.

I couldn't speak because every word formed in my mouth was a profanity.

I told my parents. When I was alone with my mother, I said "I don't have to do this and they can't make me" She said "I know that."

I don't have to.

They can't make me.


Yer Marine said...

No, they can't. The decision is yours.

I pray to God for strength for you to make the best one.

Michael Junge said...

What he said.

BostonMaggie said...

Decision is made. I am simply going to tell them that I will need the 16 days in September and in October.

You two will meet at the Drink-Ex.

As I explained to My Marine. The Drink-ex is not so much focused on drinking....but on all of you sitting together and congratulating yourselves on your luck in knowing me.

Kanani said...

I'm so glad you got the scarf. Whether or not you go on a trip, wear it, let it blow in the breeze as you make your way forward.

BostonMaggie said...

Kanani - I love the scarf! It's perfect!