August 14th

Eve of 1 year with Follicular Lymphoma

I just want to start off by asking why Follicular is not in the spell check?

It is a real word........and yet it is always underlined, online, in my computer text writers this blog etc. That should be fixed.

A year later and I still have great support (was never alone) and received so many things, cards, words of inspiration, socks, jewelry, scarves etc some are tucked away, or set aside. They are my closet (yes closet not closest) friends and I won't share them and I won't give them up.

I skipped writing about my third maintenance altogether, and number two still sits in draft stage. But today it is important to post and a day of reflections for May 15th marks the telling me after years of pain what finally was wrong with me. As much as I would like to say I was smart enough to know what Follicular Lymphoma was, I did not. I just remember them walking me into prep me for surgical biopsy nonchalantly telling me and me thinking that is not good and I believed I uttered those very words to Ed as we were ushered in and my girl was sent back to the waiting room. That is not good.

Nope not good. And I think it took another few weeks for me to say cancer. 

I have cancer. 

And now a year later my scalp is back to being tender, and my bones ache some days more then others. I have been poked, prodded, injected and drugged. I have had multiple scans, but luckily (yes luckily) no radiation and 3 different biopsies. But it could have been so much worse. I have seen that and I know that. What I have had to endure is minor compared to that pain I knew before or what I have had to watch others endure.

I had cancer

That is what they told me at the last scan in March. But I have the kind that can come back. Sometimes even more fierce then when it started and no way to tell where or when, because it likes my marrow and my bones, and they are everywhere. 

So I watch and I wait and I remember. Every bump brings fear, every ache is a reminder of what was and what could be.

But chin up I will be ready, chin up I will run. 

MAY 2014

MOTHERS DAY

Finally the month is here of my run. Been working hard lost a total of 5 lbs since chemo ended, not as much as I would have liked, but what can you do? Working on my strength. Have tried some Pilates and love it.
 They have changed the location for a second time, we will now be going to Amesbury. Still excited......still worried about the rope wall that has now been added. Oh did I forget to mention with the change of locations, came a change in obstacles?

Along with all this prep I have noticed that the rainy days (because of course Spring still has not shown up) and I notice that the cooler damp weather is making me super achy. Makes sense I guess as the cancer was in and on my bones. I guess the bad weather is going to make them hurt, just as if they had been broken. Well I guess in a way they were.

Mothers Day!! We are in the car on the way to Mama's.......then I feel my head and boy is it tender. Holy crap was that a bump?

S-H-I-T!!

First the sore bones, now tender scalp and possible bump!

I remember this.

 NO

Trying to keep it together. I had a clear scan and although I know there is a strong possibility it will come back, a part of me was hoping that I would be the exception and be the one to  not to see it again.

Looking out the window, rubbing my head. Hubby is driving.

Maybe I am just being paranoid.

If I keep rubbing this spot, I will make a bump myself for sure!!!

10 more days to Maintenance treatment number 2.
Is 10 days too long of a wait to mention these findings?
Or is waiting it out best incase I am just being paranoid.

By the end of the day I will have told only Hubby. We have decided to wait it out. I have a race to prep for.

10 days is soon enough.....

Christina Perri

"Sea of Lovers"

https://www.youtube.com/watch?v=XWTQCqEP9UM&feature=kp

REFLECTIONS

March 31 2014

And so this weekend was another busy one. Finally able to start doing things again. Helping Hubby take all the tires off my car to check the brakes. In the glove compartment I find 2 prescription bottles of muscle relaxers from 2012. 

Shaking head, small smile.

Was never my muscles.........

11 days since I was told "No signs of Lymphoma". Yeah my ears heard it, but my brain is having a hard time embracing it. 

Christina Perri
"Burning Gold" 

https://www.youtube.com/watch?v=2u40rzIbn6g

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

Jan 23rd

Round VI ~~FINAL ROUND

So we are up early, have to be there for 8:40 meeting with the Doc too, haven't seen him since Round IV. 

Whoo Hoo FINAL ROUND. Can't say it enough. Just got to get through this one! Such a mix of emotions. Don't want to get sick, so want to be done, little apprehensive on what is next. 

Hug from Hubby, have gotten a lot of those the last few days. I am a wreck.

We are in the car, mostly quiet. Come on, come on........traffic.......UGH!!

Late but here! Port poked and now meeting with Doc. He is so positive on my reaction to treatment so far, I am uplifted. I tell him I have slightly numb fingertips, had some mouth sores, told him about the sickening last round, they decide to add another anti nausea med. to this round.

Then we talk about the future. Every 2 months I will go for Rituxan infusion for 2 years maintenance. These infusions Doc says will be easier, shouldn't make me sick, should not make me tired etc. We will do one more scan before the first one in March to see what is left :)

Sounds GREAT!! Only draw back got to leave my port in. Eh ok.

And then Doc ends it the way he always does...."What can we do for you?" This makes me tear up, they are good tears, this is it, there is nothing more they can do that they have not done already.

I am ready to head up to Infusion Bay.

Jane my nurse is back Whoo Hoo, haven't seen here since Round III and we begin.

First pre-med Pills: Tylenol
                                Ativan
                                Prednisone (Have I mentioned I hate that stuff)
                   
          Pre-med IV:  Benedryl (nigh-night)
                                Zofran
                                Decadron

            Chemo IV:   Rituxan
                                Adriamaycin
                                Vincristine
                                Cytoxan

When all that is done final Port flush then you are free to go :D

And if I felt well enough to skip out I would have. I did not. But I walked out feeling pretty darn good anyway.

Hubby says I kicked ASS!!

I could not eat my lunch so I request a cheese burger on the way home and of course he obliges......it was damn good!

~SafetySuit~
"These Times"

http://www.youtube.com/watch?v=XZ3ELymrKxc

Jan 22

The Eve of Round VI

So here it is the Eve of Round VI. The final one.

How am I feeling?

Anxious.

Why?

Because the last round was not so hot and because I don't know what is next.

Will this time be as awful as last time? Gosh I hope not. I am determined to make it through this final one without losing my cookies. Yes I am worried about something I have no control over, but really what control have I had with anything in this entire situation?

Done did a lot these last few months, and tomorrow marks the end of what I consider to be the first step in what could turn out to be a multiple step battle. Probably another PET scan soon......and after that "mystery".

It was about this time of year 3 years ago when I was treated first treated for a severe headache thought to be caused by a sinus infection. HA a sinus infection I think not!! How about a cracked scull.

Cancer?

No I did not expect that one!!

Oh so long ago.

*sigh

I have felt a tinge of those achy bones this past month, hoping it is nothing. I did get my neulasta shot late by about 3 days and well it was a lousy infusion anyway so hoping maybe that is why. The achy bones are definitely not as painful or as long lasting as they had been before I started chemo. Hoping it is just paranoia. Or maybe I will always have ghostly aches.

*sigh

Will I celebrate my last chemo? YOU BET. Reservations for me and Hubby are already made for the end of February (yes waiting to get most of the chemo out of me) :) 

I will not worry about the bills coming in.

I will not worry about the ghostly aches.

I will not worry about the what the next step will be.
(although I will be sure to ask tomorrow anyway)

February we shall celebrate conquering the first step.
Completing SIX rounds of chemo.

Thoughts all over the place?
 
Yes.

8:40 am........will come to fast, and yet not fast enough.

~Lana Del Rey~

"Born to Die"

http://www.youtube.com/watch?v=AddAcFd-SEs