Thursday, May 23, 2013

Here she is!

Here's my new and improved website logo. Special thanks to my baby sister, Susan, who designed the logo and to Alex, the graphic designer ( I love it!

As for me... I am not new and improved... just yet. I had the liver biopsies yesterday, but the RFA had to be canceled. Turns out the liver lesion is in close proximity of my heart, and there was a high risk that they could burn a hole in my heart with the ablation. Ouch!! Yowsers! :o) So... I now have a different procedure called chemo embolization scheduled next Tuesday.

My radiation yesterday was just a test run, and today's treatment had to be canceled because of technical problems. Baby steps...but I'm getting there. Also had great care from start to finish with Mary in admissions at 9am till the ladies in radiation when I left at 7:30pm.

well lots of love from my whole heart... little lisa lollipop

Wednesday, May 22, 2013

hard hats required

Hard hats required... I'm under construction! I'm having my RFA today: Radio Frequency Ablation. Yay!
R, R, R to the F.
F, F, F to the A.
R to the F.
F to the A.

Sorry... old high school cheer  (but we would use our high school initials instead: B.H.S.). I'm
just really excited to move forward and get some of this junk out of me. Aside from burning out any liver cancer lesions, Dr S. will do another biopsy to send out for further "paternity" testing... to identify this cancer once and for all. As Maury Povich would say... "Pancreatic cancer, you are NOT the father." :o) But we'll see who the daddy is soon enough.

zip lining in 2009 
More construction later today at 6pm for my first proton radiation treatment... to the nodules in the pancreas area. So... I'll be a new and improved woman by the end of the day :o)

lots of love...
the old and the new little lisa lollipop

P.S. we could rock the hard hat look.

Monday, May 20, 2013

best gift EVER!

The other day I came across my best gift ever! A little boy gave it to me almost 15 years ago. It was a going away present. A half used eraser. To some... it may not look like much, but I knew its value...  to someone who had so little.

See... my chicos in Mexico had little possessions of their own. Come to think of it... they each had their own 2 pairs of panties and a toothbrush. That's it... and perhaps a few little items that they would hide under their pillows. Everything else was shared. They all shared a few lockers of clothes. And if you were last in line to get dressed that day, were pretty much screwed if it didn't fit. The caretakers kept their toothbrushes together and would have a roll call so to say when it was time to brush. Each toothbrush identified by its color and how many lines were scratched on it, such as red 3. Always followed by an enthusiastic, "Yo!" or "Me!"
 prized bottle of lotion

On the Day of the Three Kings, gift bags were donated to all the kids. Of course, they were excited to get some toys... but I have never seen someone even more excited about a bottle of shampoo or lotion. "Lisa! Shampooooooooo!" as he held it up in the air as it were a prize. Of course... it would later be taken away and placed with all the community items. Poor little guy.

circa 1998

Well I feel blessed for all I have... and especially to have my eraser. It's too precious for me to even use.

lots of love... little lisa lollipop

P.S. Note the triple bunk sleeping arrangements for the chicos.

Saturday, May 18, 2013

one tough cookie

I'm channeling my inner cookie, and i would like to think that I am one tough cookie :o). Of course, it has to be chocolate chip because they're my favorite. And preferably served with milk :o). And to celebrate my good news, I made chocolate chip cookies yesterday.

See... this past week has had a lot of ups and downs. In the end, I am now approved from my insurance company for both the RFA (radio frequency ablation) and the proton radiation therapy. Originally, I was supposed to have the RFA done this past Tuesday, but it was cancelled. Now I can officially post... without changing what I say... that my RFA will be this Wednesday morning. And the radiation will begin that night at 6pm. Yay! I never thought i would be so excited for radiation and a medical procedure, but I'm ecstatic!
Just want the cancer out and gone! Gone, baby, gone.

Sorry for taking a long break in posting. Aside from not having a clear medical answer, I hadn't posted for awhile because I had been having bad headaches that I just couldn't shake. But I have been thinking of you... because your prayers are working. The other day my doctor and I were talking about my scans and how happy we were that all was stable. I asked her if it was common for this cancer to grow on treatment and not respond; she said it's more common than not. So again... I am so lucky and blessed. I cannot thank you all enough for your prayers. Please keep them coming :o)

Well... I haven't been up to much. My lungs continue to improve as well as my headaches (we think they may have been allergies, go figure). Patti gave me a funny hat, and I saw my first double rainbow last Saturday when we were celebrating Mother's Day early. Now I can check it off my bucket list. :o)

lots of love & chocolate chip cookies... milk optional

little lisa lollipop

Friday, May 10, 2013

Ahoy Matey

Perhaps I will try the pirate angle... plus I can really pull it off since i have one leg. And... I got some ink yesterday. But it's not a skull and crossbones or the typical pirate tattoo for that matter. The tattoos that I got yesterday are more like freckles... 5 total. They are used to mark the radiation field, so they are always going in the correct spot once I start... which will be sometime this month. Oddly enough, these are not my first tattoos. I had gotten similar ones back when I received radiation to my right leg when I was ten. All but one of them came off with the leg when I was nineteen. And today happens to be the anniversary of my amputation. It marks the official half way point in my life from when I lost my leg... and i never found it. :o) I remember that I had to sign a medical release form with my surgery saying that I didn't want it back. Isn't that funny. Arrrggghhh! Not sure if I have the right pirate lingo here, but i'll work on it :o). Also wanted to share that I am on the schedule. Yay! (I know a pirate wouldn't say that, but I'm excited). I have my RFA - radiofrequency ablation of the liver lesions this coming Tuesday. Will keep you posted.

lots of love... little lisa lollipop

Monday, May 6, 2013

Happy Nurse's Day!!!

Happy Nurse's Day to all nurses...
and especially to my coworkers of 3 East/3South!!
Words can not express how overwhelmed I have been from all of your love and support over the
past months. You have only proven what I have already known... you are an amazing group of people. Muchas gracias for everything.

lots of love back to all of you...
little lisa lollipop

P.S. That's my picture from our staff picture
board on 3East/3South. :o)

The following was written one of our former coworkers and one of the funniest nurses that I know: Teresa Conte.  It's an ode to the staff on our floor: 3East/3South.

Any time I tell people what I do; I brace myself for the inevitable.
"I work at the Children's Hospital of Philadelphia."
"What department?"
"Oh my gosh, how do you do that? It must be sooooo sad. You must be an angel..."

OK, let me start off by saying that if you know me at all, rarely does the word "angel" come to mind... but I realize that people who do not share in my world have no idea how amazing it is. OK, right, cancer and chemotherapy and blood counts do not sound like a party. But I have just about the best job in the world, as corny as that might sound. I have the privilege of working with the most amazing group of nurses I have ever known. These men and women have had an impact on my life that words can not easily describe. Each and every member of our staff has contributed in some way to the lives of our kids, and their accomplishments blow me away everyday.

They are there, everyday of the battle against this horrible disease. They are in family meetings when the devastating news of the diagnosis is given. They are there to hold the hand of a child getting his blood work. They are there to rub the head of the little girl whose spinal tap is particularly challenging. They are in medical rounds to give a voice from the bedside. They are there at night to tuck in a baby after his parents have gone to get a much needed cup of coffee. They are there to help guide a resident through a rough night.

These men and women that I work with never cease to amaze me. I have been busy. I have been frustrated. I have been overwhelmed at times. But I have never been alone... These men and women are truly unique and special. I am so proud to work with them. From the experienced nurse who serves as a mentor, to the new graduate whose infectious enthusiasm reminds me why I chose this profession... all of them bring something unique to our unit. Some of us have been personally touched by cancer in our own lives. Yet, even with the experience being so close to home, we manage to look beyond ourselves and reach out to continue to help our patients and families. It is an amazing spirit that can reassure a parent when life itself is so uncertain. It takes an amazing spirit to make laughter fill the halls of a hospital. It takes an amazing spirit to see the beauty of a bald head.

These men and women all qualify. There is a silent camaraderie among us and a sense that we are all in this battle together. Are we perfect? Not by along shot, but I think that's what makes the journey all that more interesting. When people ask me, "How do you do it?" I often think of my fellow nurses on 3East/3South and ask myself, "How could I not do this?"

Sunday, May 5, 2013

Happy Cinco de Mayo!

Happy Cinco de Mayo!
Like St Patty's Day... when we are all "Irish," we are all "Mexican" today :o)
Truthfully though, Cinco de Mayo or May 5th isn't Mexico's independence day, but it is celebrated by the people of Puebla, Mexico. Little history lesson whether you like it or not :o), an important battle was won by the Mexican army in Puebla against the French back in the 1860s.

Celebrating Susan's birthday yesterday!
As for me, I'm starting to feel better. My cough is improving and my voice is returning; I no longer sound like a man :o). Just excited to move forward with my treatment over the next couple weeks, which is reason enough to celebrate for me.

Celebrating everyday... or trying to when i have the energy :o)
lots of love... little lisa lollipop

P.S. To celebrate my energy today, I cleaned my house. Woohooo!

Saturday, May 4, 2013

A toast...

I'ld like to make a toast!
Because my doctor says, "NOTHING NEW, & NOTHING GREW! Yippee!

So even though i am still somewhat in limbo, i'll take it. Patience, i guess, is key. Sometimes we want things in black or white; perhaps gray is the safer color for now. And if my doctor is optimistic, so am I.

Current plan is radiofrequency ablation of any visible liver lesions. Kind of like zap them out. And more good news is that one of the liver lesions has disappeared completely on scans. I'll also be getting 6 weeks of radiation (hopefully proton) to the pancreas bed. And more good news, some of the pancreas nodules looked necrotic which means they are dying. Yay! Along with the radiation, i'll be on a continuous infusion of chemo: 5-FU to be specific... if you care/ if you are a medical person :o)

Speaking of chemo, I apparently have pulmonary (lung) toxicity from the gemcitabine chemo. Hmmm... no wonder I was sick all of April, and I couldn't shake it. So that bought me 5 days of steroids to calm my lungs down. And now that my Abraxane is on hold as well, my peripheral neuropathy* should get better. *Peripheral neuropathy is a side effect of the chemo... the best way i can describe it is that it makes all your finger tips numb.

So that's my big news and what we are toasting to. Thanks for all the prayers and all the finger and toe crossing :o). Please keep them coming. And this is what I have to say to you, cancer!

lots of love...
little lisa lollipop

May 3: Happy Birthday, brother Vinnie!

May 4: Happy Birthday, baby sister Susan!

Thursday, May 2, 2013

Keep Calm & Carry On

Keep Calm and Carry On. Good advice for the British during World War II? And good advice for me now?

But... I'm feeling nothing but calm. And I realized last night... of course, in the middle of the night... that sometimes you just gotta cry. It doesn't mean you have given up or that you are being negative. But the emotions can just be too much sometimes, and you have to let it out. Well... now that i have a mustache from blowing my nose so much :o), I'm heeding my friend Julie's advice. I'm putting my big girl panties on. But it's okay if the big girl panties sometimes don't fit... especially if you have one tushie like me.

Which reminds me... kind of embarrassing... but once, okay maybe twice, my panties fell down while i was walking. See... a bag was rubbing against my right hip while i was walking/crutching, and it pushed them down right off of me :o). Oddly enough, this was not my life's most embarrassing moment, but it would qualify for America's Funniest Home Video. Fortunately for me, it was before the cell phone and you tube era.

semi crossed
Well... i haven't been up to much after my return from New York on Saturday. Got my state car inspection. Woooohoo! Big bucket list item there :o) Got a pedicure from Juan. He said, "good thing there's only one" :o). And i went to see the shrine to Saint Katharine Drexel... to solicit more prayers :o).

Well... I'll get my test results tomorrow. As my dear friend Anna would say, "Let's flood heaven with prayers. And Jesus will be like, say what?" I'ld be lying if i said i wasn't a wee bit scared, but i'm only human (thanks, Nicole, for reminding me). And for now, as my baby sister would said, my fingers are crossed, my toes are crossed, and even my eyes are crossed.
Me & baby sister at Wafels & Dinges in NYC. Yummy!

lots of love... your cross-eyed friend

little lisa lollipop

P.S. Happy birthday to Max, the sweetest little boy I know. And happy birthday to George too ( his imaginary twin :o). Me love Max so much!