Friday, March 5, 2010
Monday, February 22, 2010
I'm a big birthday fan, and always enjoy the celebrations and phone calls/emails that come with it. It's so wonderful to hear from people who you may not have spoken to in months or years. I had a wonderful Valentines day weekend with Carlton followed up by an awesome birthday. Carlton treated me to this Venezuelan restaurant I had been wanting to try! It was delicious. And on Friday one of my closest friends came into town, and we had a great dinner and conversation. Carlton's birthday is just 3 days after mine, he turned 26 on Saturday. And at first I have to be honest it was tough to share my birthday celebrations (usually we end of celebrating the same weekend)...but over the past 3 birthdays I have really grown to love it. More of our friends (2 of my best friends and one fiance:) drove in from Syracuse, and it was just so wonderful to have them with us for the weekend. It was a lot of people for our wee apartment, but there was certainly a lot of love.
<3 It was a wonderful week with the exception of another terrible loss..
Carlton and I did lose our friend RJ to DRST (a rare cancer) this week, which has taken a toll on our Young Adult Cancer Network, but we are happy that RJ is no longer in pain, and hopefully another guardian angel for us down here. Rest in Peace RJ..we miss you, and wish we could have spent more time with you before you were taken from us..
Loosing Pam & RJ so close is very upsetting for me, but meanwhile renews my passion for advocacy for us YA's ..cancer sucks and takes people whom fight like hell to live.
More to come on this...thanks for reading!
Sunday, February 7, 2010
Just because I'm losing
Doesn't mean I'm lost
Doesn't mean I'll stop
Doesn't mean I will cross
Just because I'm hurting
Doesn't mean I'm hurt
Doesn't mean I didn't get what I deserve
No better and no worse
I just got lost
Every river that I've tried to cross
And every door I ever tried was locked
Ooh-Oh, And I'm just waiting till the shine wears off...
Thanks for reading :)
P.s. Were having friends over for the superbowl tonight, and I am PSYCHED!
Saturday, February 6, 2010
I received news yesterday when I arrived at Hope Lodge that Pam had passed away on Thursday from a long battle with leukemia and lymphoma. I haven't begun to process this news yet. Just praying that she is no longer in pain and that she can eat everything and anything she wants in heaven, and that she's dancing decked out in glamorous jewelry from head to toe..
This past blog is from an earlier encounter I had with Pam..
During my September weekend I met Pam. Pam had just arrived at the Lodge after being discharged from the hospital post- stem cell transplant. Her brother had been her donor, and the transplant was successful. Pam was staying at the Lodge with her mom, whom would be her lifeline- doing all of her cooking as post stem cell you cannot eat anything that you do not make, because of the threat of bacteria. Pam is a middle aged woman from NYC, whom left behind her husband and teenage son to come to Boston for treatment. She is lovely, funny- kind and caring. We hit it off , realizing our diagnosis date was the same! Cancer rocked our world on the very same day..it's an interesting thing to ponder both of us shocked, our families, loved ones distraught the same day..
So we talked a lot her first weekend and I looked forward to seeing Pam and her mom Marilyn in October. When I arrived Halloween weekend Pam was one of the first faces I saw. She looked stronger, with more color and vitality than the month before. We again shared laughs and some good conversation. She turned me on to this ring that she and her mom had bought, I fell in love with it and bought one the next week to celebrate my 3 years since cancer rocked my world..
I left that weekend unsure if they would be around when I was back in December. Yesterday as I entered the Lodge I saw Pam, and I was so excited.."PAM! YAY! Your here!" And she looked at me with tears in her eyes and said, "Sarah, my leukemia is back". Right there, in the kitchen of the Hope Lodge we both just lost our breath. I struggled to find the words.."Ok, ok, Pam I am so sorry- but we'll keep fighting. It's ok- your having more treatment?" Pam replied, "yes, yes there going to try crazy stuff."
That was then, this is now. I'm missing Pam this weekend, and trying to focus on the love and appreciation she had for this place..I'll keep wearing my ring and thinking of what an amazing woman she was.
Thursday, February 4, 2010
Well back I am to vent about my horrible oncologist. Maybe I should start at the beginning. When I was diagnosed with cancer, my overall experience with my medical team was great. My oncologist, Dr. Gullo who had been my Nana's oncologist and saved her life, also took care of me. Needless to say my family loves the guy, especially Nana. I adored my surgeon who was an old family friend by coincidence and my Onc. nurses were amazing. The staff at my treatment facility Hematology Oncology Associates in Syracuse made my life happy during those 8 months of treatment. I know most people can't stand their infusion rooms, but I loved mine. My nurses, who were closer in age to me than the other patients always made me laugh, made me feel pretty and gossiped. Which come on, to a bald 21-year-old girl means the world:).
Fast forward to 2008, I graduate from college and get a job in Boston which means...POOF off Mom and Dad's health plan and forced to get a new oncologist. Because I don't want to get in trouble let's call my onc Dr. Snide... well from the beginning Dr. Snide was no big fan of me. My educated, passion filled self and his science/corny personality did not mix well. He often tends to make comments like, "Well Sarah, when you re-occur" rather than "if you re-occur". And to not worry about my cancer so much, which is something I wish us survivors could do. How wonderful life would be if we could not worry about cancer. I'd say I have a healthy fear of recurrence, I don't walk around expecting it to happen..I just like to know the facts.
My problems with Dr. Snide came to a head when he told me that I was reoccurring in fall 2008. As I walked out of his office that day, with steam blowing out my ears and tears running down my face, my mom, Carlton and I all thought I would be re-entering treatment after having a surgical biopsy the following week. Well it turned out that after waiting 11, YES 11 days to biopsy results (he somehow forgot to call me, I had to page him) Dr. Snide explained in highly scientific language that my cancer wasn't back, that I had some sort of hyperplasia. I hung up the phone and was just shocked..WTF?!?! You told us to expect radiation! Maybe a stem cell? WTF?!
Ok so i tried to give Dr. Snide the benefit of the doubt at this point, maybe he was still warming up to my expectations of my oncology team. But no, alas over the past 6 months he has been truly unproffessional with me. He's phrased things like, " Well Sarah, what do you want to do?" and said things in response to a question like "for lack of an explanation, sure". That's it.
When my dad came to my appt. this fall Dr. Snide was a different guy, much more social, and loved answering my dads generic questions. Steve loves to ask, "Is it fair to say Sarah's in remission?" Dr. Snide: "Yes, Mr. Delaney that's exactly the words to use." He talks to my parents like there numbskulls and it pisses me off. I see through his condescending b.s.
I'm at the end of my rope. I have a swollen lymph node again on the right side of my neck, the same side they biopsied in 2008, which continually shows on PET's. It's starting to be painful and today I had the guts to call Dr. Snide and he said his typical..."well what do you want to do?"
What the F do you think I know that!?!? I'm calling you!!!
It's time for me to get a second opinion, I just don't know how. Any of you with advice, please help.
Friday, December 11, 2009
"I’ve been walking in the same way as I did
Missing out the cracks in the pavement
And tutting my heel and strutting my feet
“Is there anything I can do for you dear? Is there anyone I can call?”
“No and thank you, please Madam. I ain’t lost, just wandering”
When I was diagnosed with stage III Hodgkins Lymphoma it was November 8,2006. On November 9, 2006 I packed up my life in D.C. and moved home to Syracuse for treatment. It was a horrible thing to find out you have cancer one day and the next be completely turning your life upside down. In fact, I find it very hard to explain. I can remember standing in my bedroom in my off campus apartment with one of my dearest friends, Noel throwing all of my stuff in garbage bags. Thank god Noel was there to keep my mind off what we were actually doing. As I look back I don't even know how I was functioning. I didn't want to go home, leave my life in D.C. I love my home, my amazing friends and family, but Syracuse has always been a smothering environment for me. I felt when I had to drop out of college and move home for chemo that I was loosing what I had worked so hard to have for myself in Washington, my own life.
Anyways I tried my best to keep it together in the months following my return to Syracuse. And for the most part I would say I did so with dignity. However there were times where I need AIR and SPACE to cry and scream if I wanted to. So I spent those times aimlessly walking around my neighborhood..I really never had a destination or a goal in my walks other than I just need the AIR and SPACE to be by myself. I can remember cars slowing down as they drove by me, and I imagine I must have been quite the sight.
Round my hometown
Memories are fresh
Round my hometown
Ooh the people I’ve met
Are the wonders of my world
Are the wonders of my world
Are the wonders of this world
Are the wonders of my world
This next chunk of the song represent my more real feelings about home. My best friends in the world were born and raised in Liverpool, NY. They along with my family were the most amazing people during my treatment and time at home. They always have been and always will be. Without Tiff driving home 2 1/2 from Geneseo for every one of my chemo's. Or Christina, Jess and Phallon to come over and watch Greys with me on Thursdays I would have been completely lost. With Courtney, Sarah and Val always checking on me to make sure I was ok. My mom, dad, Becca, Carlton and Nana were amazing caretakers. They are all truly the wonders of my world.
I like it in the city when the air is so thick and opaque
I love to see everybody in short skirts, shorts and shades
I like it in the city when two worlds collide
You get the people and the government
Everybody taking different sides
Shows that we ain’t gonna stand shit
Shows that we are united
Shows that we ain’t gonna take it
Shows that we ain’t gonna stand shit
Shows that we are united"
And now this chunk is totally my life outside of "home" Since I was about 9 I would say-- I knew I did not want to live in upstate NY forever. I just knew it wasn't for me. These lyrics totally encompass what I love about city living. .
Oh I love Adele!<3