RESULTS DAY & FIRST MAINTENANCE

March 20th 2014

And so it was an un-restful night and a n early awakening. Today is the day!!! Gonna find out where we are at and what is next. NERVOUS!!! 

First time for a short infusion not wearing my chemo slipper shoes, not wearing leggings.........chemo is done, we are onto a new phase..........hopefully. Not sure whether to cry or laugh, been a long wait for this day and yet this ordeal seems to have just started yesterday.

I don't think me or hubby have said one word all the way here. To be honest I can't.

We park, after all these visits Hubby tries to park on another floor? uhm NO!!! 4th floor just like every other time please!!! DEEP BREATH!!

5th floor Oncology, time for blood work.........hope it is good,  I did not go after the last infusion.......ssshhh don't tell my Mom :D. What can I say sometimes I am a rebel, but really they did not tell me I had to go, so I didn't. They take vitals......blood pressure is high well no s***.......they change the cuff, better. I seem to have lost 2 pounds AWESOME. Then we are again waiting to see the DR.

Small room, full of sunshine.

Then the knock at the door and in the DR comes. 

"Well we can look at the PET scan, but frankly it is kind of boring." he is smiling, this is good right? Has to be good right. I am smiling back, but I don't say a word, not sure I know what to say. 

"There is nothing to see, do you want to see it?" HAHAHAHAHA YES!!!!!!!!!!

And there it is in purple and white! He has brought up the first scan to compare with this one......my brain is still there as well as all my other organs. But the purple lymphoma areas.........are no more. WOW what do you say to that? Tears escape, as he explains that now treatment will change as far as my infusions (we already knew this) blah blah blah, hoping Hubby is paying attention here, in case he does say something we don't already know. A couple of tears have escaped despite the huge smile I know I am wearing. I have suddenly lost more pounds......off my shoulders, and I feel like I can breathe better LOL. Crazy stuff the mind can do.

He has answered my other questions. I can color my hair!! I can put on the nails!! I can run in May.

BBBUUUTTT.......wait a minute. I have to know. 

"Are you saying that what Lymphoma I have is decreased or are you saying it is gone?"

"I am saying that looking at this PET scan there are NO SIGNS OF LYMPHOMA"

Clear as a bell, got it :D I actually think I gained 2 inches in height at that moment!!

Then it is upstairs we go to see Nurse Jane. I am hooked up to what is supposed to be a piece of cake infusion. Going to wait until I get home to post the good news. That is right make em wait. Okay I can't. Jane is hooking up the Benny I have a limited time to do this before the world goes wonky and I need to sleep. Wait NO I am not going to sleep for this one. I have been freed of a great weight. I am staying awake I silently vow.

But the Benny hits hard and I am nauseous through the whole thing, have to put down the Kindle, can't eat my lunch........and so help me if I move or open my eyes......all of my insides are going to be on the outside.

Really on the easy one?

YES but I kept it all in anyway, was not going to ruin a good day with vomit!!!!

~Bon Jovi~

"It's My Life"

https://www.youtube.com/watch?v=vx2u5uUu3DE

  

March 19 2014

CHECK UP EVE

Tomorrow will mean results of the scan as well as the first of 12 maintenance treatments (doesn't that sound better than 2 years, yeah I think so to).

Had my PET scan on Sunday, they pumped me with the radioactive sugar blend and into the tubing I went. Not so fast folks, they don't tell you anything. Instead you spend the next few days (4 to be exact) wondering, trying to continue on your path, but the whole time in the back of your mind it is there. It is always there, and will probably always be there. The question of whether or not it is gone. Ppsshhhh part of me is positive the meds did what they were supposed to, another part is insecure and wonders.

Where have I been? I have been growing hair!! No but really I have been healing. I have a terrible case of dry skin and my toenails are still weird I have been living. Yup since that last round in Jan. I have made moves to get back to me. This means back to the gym, back to work, photographing the Fire Dept., entered an Art show (image accepted), back to doing house work......ok maybe not so much on the last one, but I am getting there. I am officially signed up for the Warrior Dash in May, hopefully Dr. approves! It is a 3.34 mile race with 12 obstacles. In the short time from Jan to now I have been able to get from only being able to walk 3 miles (however long it took) to 10 min straight jog and 3 miles in 42 min at 3% incline and of course lifting some weights too. And I can still move in the days to follow. YOU HAVE NO IDEA how much that alone means and feels. If I am told I can't race, I have already won. I can move, sleep and I don't have to pretend I don't hurt and I don't have to ignore that I hurt with everything I do, because I don't hurt anymore.

My smile is mine again and it is true.

"Despite its slow-growing nature, most cases of follicular lymphoma are not curable with currently available therapies."

And so why would fear of tomorrow be unreasonable?

Don't be negative everyone says, but in reality how could you not be........... even just a little. 

Do I want to dwell on it? Uhm no, but it is a reality I can't ignore, just tell me either way, and soon, I got things to do. I personally think the scan and results should both be on the same day. 

Order of my questions for the Doc at this long awaited appointment:

            Can I color my hair?

             Can I put my nails back on?

            Can I run in May? 

             Is the cancer gone?

                     What? It is a good order :)

Today I will go to the gym, after all it is run day. I will do my best. 

And tomorrow after what will probably be an un-restful night I will get up early in the morning, see the boy off. Watch the sun come up, and sip my coffee. Wondering what will be and what will not be.

Then it will be time to head out. Hubby by my side, holding my hand we will yet again make the trek across towns, cruising the highway holding hands and quiet, not much to say on appointment day, just got to hold on. 

Then we will check in and wait................................................................................................................................................................................................................................................................................................................................

and all the while I will try to remind myself  "that this is not the end of me, this is the beginning.........."

~Christina Perri~

"I believe"

https://www.youtube.com/watch?v=53CNJnmFr5I