I spent this week resting after chemo on Monday.
And by resting I mean nothing but sleep on Tues, Weds., and most of Thurs.
Thurs I had to ease myself out of sleep mode so I went grocery shopping with Deb.
I had to save my energy for my brother's wedding, which was absolutely fabulous and worth all the rest.
Rehearsal dinner was Friday night and I managed to check out all the festivities. I got to eat, drink, and be merry.
On Sat. X had his first state shoot out for soccer. . . .. in Dover NH. . . . 2.5 hours away.
We had to be out of the house by 6:45.
He placed 4th but still had a good time playing with cousin Carter and making some new friends.
Even better, Meme and Grandpa (Jon's parents) took them out to Chuck E Cheese. Can life get any better? Soccer and Chuck E Cheese?
I managed to get out of bed at 6:20 am and not crawl back in until 9:30 pm.
That's an accomplishment.
And I didn't even take my ritalin!
Yay, go- me!
I managed to dance at the wedding, which was my ultimate goal. I hadn't danced at a wedding since Heather's 2 years ago.
I have, however, danced at Bachelorette parties many, many times.
I didn't realize the excited skeptical that would be caused by me hitting the dance floor but the cameras came out like Lindsay Lohan with the paparrazi.
So todays "just chill" time has actually been turned into an all day after party celebrating my nephew's 1 year birthday. Congrats Preston!
I'm out to rest.

Both my pulmonologist and hematologist gave me the same advice: EXCERISE! I must continue to move and beactive. 

If this is what they're telling me is the best therapy. I'm going to do it. They both told me in very different ways. 

I asked weinhouse about how to improve my lung function through excercise, And he amost jumped out of his chair screaming, "YES, EXCERCISE! No doctor will ever tell you not to excercise!" He also said the "hyperextention" of mega athletes  lungs was just for show (so no cheating). But when you excercise and maintain healthy muscles that, even though the numbers don't "change" the ease of breathing and quality of life improve. 

My hematologist, instead of jumping all over me, excited that I may be interested in exercising inctead pouted when I asked for a wheelchair ordered and demanded to know when and why  would be  using one. 

So i have started stretching. I played soccer outside with x. I tried to run for the first time in years. My legs felt like lead. I don't want my body to be a burden if I can prevent it. I have to keep it movin.'. I'm going to work on routine. I used to excericise with x after school until I got too nervous about my breathing. who wants to have their child see them struggle. But x is all about helping me to get slowly back in shape. 

Xander, xander, xander

X decided yesterday morning that I was too sick to be left alone and that he would not be going to school.

 Transitioning x to and from me has been a long standing issue. 

There is no punishment/bribe/routine that I have found works when my 7year old really thinks his mom could be in imminent danger, and really, try to drag a crying, screaming, hysterical child off of you when you are barely conscious the day after chemo.

 Holding it together for the 1.5 hrs after he gets up bathes, has breakfast, etcs. Is hard enough.

 And he even gave the "family comes first" retort (damn that priotities conversation. You know the God, family, school, etc).

 I started making SOS calls at 8. I called J and handed the phone over to x. I thought this meant I was getting rescued and started to pass out. 

By the time I realized help was not coming, I was exhausted.

 X won and got to stay home, watching me sleep. 

One week this summer, I got chemo and he sat with me, watching me half sleep for days when he knew he could have been swimming or playing with friends. If he's willing to give up that, it's not so hard to reject school.

 I really wish I had the answer for this.

Did You know. . .

 That tylenol night time sleep aid  is actually benadryl at twice the usual 25 MG dosage. Diphenhydramine is the active ingredient in both and the generic version of benadryl. If you get pure benadryl with no funky additive, it's diphenhrydramine. Save yourself some money and buy diphenhydramine instead and get yourself a two for one deal.

I remember why I had to stop writing, I had to stop going to all these damn appointments because I chose to live over hanging out in waiting rooms.

 I've enjoyed myself a little more ever since, but since I'm waiting, I've been people watching, listening to conversation among families that just found out their loved one has less than a week left. 

It has to be one of the worst feelings. 

The practical one says "well we all knew this was coming."

 The other says something about delagating the belongings and the man, late sixties in a wheelchair, with oxygen in his nose whose glassy eyes are actually tears and who hasn't said a word. When I looked at him and smiled goodbye he looked away sadly. 

I woke up every two hours on the hour.
Sometimes I'd wake up to catch myself talking.
Once I woke up to Xander TELLING me to stop talking.
You'd think I was nervous, but I've got nothing. . . .. except X's first tournament ever!
It's in Merrimack and I'm pretty sure it's the first travel tournament I ever played in as a youngster.
Can't wait to see what happens.
I, myself, have decided to push the envelope a little.
I need to excercise.
I need more activity.
I'm starting solely and feeling better all ready.

I made it.

I did it!
Let's all congratulate me for finally forcing myself off the couch and pushing myself to get back to some activities I enjoy, despite my lungs.
I've been thinking, wanting, to start exercising but the time was never right. X was home so I needed to save my energy. We weren't on a schedule. I'd wear myself out and not be able to do anything all day, etc.,etc., excuse, excuse.
Then I spoke to Dr.  G yesterday who couldn't hide the sadness and disappointment in his voice that I would want a wheelchair.
He said he doesn't want me getting de-conditioned, which is a fear of mine too.
De-conditioning could be catastrophic to me.
So I picked X up and suggested, for the fist time this year, that we go out searching for salamanders.
His face lit up. This has always been one of his favorite things.
Every year our cooler turns into a terrarium for frogs, salamanders, and worms of all kinds.
We used to call X, Salamander Xander.
Then after searching we played soccer for a little bit.
I thought this was going to be my reasonable activity for the day, but co-coach had forgotten about soccer practice that night.
I didn't want to leave J frustrated with ten 7-8 year olds so I stepped up.
I did the stretches. I tried to coordinate the drills so the kids would do the most work with as little effort from me as possible.
J didn't get this since when I'd make a suggestion he'd come up with something else until he decided to scrimmage, splitting the team in half so I had to coach alone.
Probably one of the most exhausting things we could have chosen.
But I still did okay.
I couldn't always breathe when I wanted to make suggestions, such as when I brought a girl up from defense for a throw in and she threw it in towards our goal to nobody.
Oopsy, but I couldn't get the words out.
But I still had fun, and I really felt good after.
I'm working my way up, but I am still getting that wheelchair.

All I wanted

All I wanted out of Health Care Reform was for equal health care treatment for every individual with disregard to age, previous conditions, income, race, and whether they were insured or not.

I think this is what most people were hoping for, but no one could agree on the process and funding how to get to this point.

Luckily, some changes were made.

I'll no longer be threatening with meeting the 2 million dollar treatment maximum and having to pay out of pocket for care. I don't have to fear "recissions," where insurance cuts a patient when they get sick, and no more refusing coverage due to "pre-existing" conditions, that's discrimination.

But now, even as I jump for joy that I could possibly live with cancer as a chronic disease, I realize that new, innovative, life saving medications are out of reach for many.

Gleevac is America's new "miracle drug" has allowed people with non-Hodgkin's lymphoma and certain leukemias to lead a relatively normal life.
One gleevac patient I know, a young woman in love and of child bearing age, is considering having a child (with her doctor's collaboration of course).

Fabulous, except the cost of this medication is $5000 monthly.
Remicade, a chemotherapy agent Jon took several years ago for his crohn's disease, cost $8,500 monthly.

Neither of these new, breakthrough medications are affordable to middle class america.

Unfortunately, our health care system will never be truly reformed until I am no longer required to sign a "promise to pay" notice upon entering the ER with chest pain and shortness of breath.

It won't be reformed until every patient can receive the best medical intervention available at the lowest cost possible. There is still work to be done, and thankfully it is.