March 26, 2010 § Leave a comment
For work I have been doing phone interviews with candidates for our summer fellows via PIH. They have been really great, although I am glad they are over as they took up quite a bit of time over the past few weeks.
The great part about these interviews was getting to hear our candidates get really excited about the work that we are doing to transform primary care and get health-care focused back on the patients. It was also wonderful to hear people passionate about social justice and their awareness of social determinants of health. Most of the people I interviewed were close to my age which was fabulous! Sometimes I feel like it’s only my co-workers who get as fired up on these issues, and it makes me scared that their are not a ton of like minds out there..in doing this interviews however I see that there are similar stories strewn from Southern California, to Michigan to Vietnam. What an experience!
Health care reform has been all over the news and in many conversations I’ve had over the past week. It’s awesome to hear everyone’s reactions to the bill – and also good to vent about our frustration with friends who just don’t share our outlook.
Side note: I parked in the Dana-Farber parking garage this morning and watched 3 people chain smoking in their car. This is ridiculous to me. I know smoking is an addiction, but no one wants to smell cigarettes when they are walking to the car after chemo. People are really unbelievable.
Side note 2: I’m off to California tomorrow morning with Carlton for a week of vacation! Were going to see family in SanFrancisco and do a night or two in Napa. Can’t wait! I’ll take lots of pics to share with you all. And hopefully i’ll meet a lot of like minded hippies while there.
March 22, 2010 § 1 Comment
If you are offended by progressive ideals on government and health care I urge you to navigate away from my blog. fast
Ok I need a break from the conservative facebook friends who are berating the health care reform bill, displaying their ignorance all over facebook. I believe they all are ill-informed on the bill. (That’s my hope anyways)
Now I by no means am ecstatic with the bill, nor have I spent hours reading the text of the bill..but I do consider myself informed enough to have an opinion. That being said I feel I need to take to my blog to explain my feelings about the bill as a progressive democrat-25 year old female- and cancer survivor.
Things I wish the bill included, a strong public option. I could defend this till i’m blue in the face. I will leave that alone for fear of loosing even my moderate readers.
2nd, a faster time line to get rid of the pre-existing condition garbage. 2014 is a long ways off, and the idea of facing high premiums and potential denial from insurance companies for another 4 years does not make me happy. I really don’t understand how anyone who has love in their heart can explain to me why people should be discriminated against because of a pre-existing condition. Was it my fault? The way I see it, it’s discrimination. Young-adult cancer survivors as well as the millions of other adults with pre-existing condition (that includes all you asthmatics out there) do not need to be dealing with financial hardships because they had cancer or whatever they had. The YA’s I know spend most of what would be in their savings accounts on prescriptions and c0-pays, and that’s people in remission. Now on top of that they should be paying hire premiums? Or have to forgo treatment for lack of money? Seriously people??
And I could go on and on, but it would be better if you checked out
your time will be well spent! The site shows the original house and senate bills and the reconciled bill which is what passed last night and will be signed into law tomorrow by President Obama.
Thanks for your time folks:)
March 11, 2010 § 3 Comments
With the birth of my dear friend Noel’s baby girl Clare, and another close friend with a baby girl on the way I find myself so enthralled with the land of baby. It’s really crazy when your friends start getting married, yeah that’s a “were adults” moment but baby’s are totally different. I am so excited to meet them, squeeze them and spoil them!!
I have always been someone who had a motherly instinct, it plays a part in everything I do. It seems in the past few years that if there is a baby/kid in the room- I can’t keep my eyes off of them. I don’t know if this is my slightly accelerated maternal time clock (thanks chemo) or if this is typical of a mid-twenties lady.
Carlton & I can’t wait to have kids down the line- and hope we’ll be able to do so naturally. Although going through the chemo-therapy I did may give us some trouble. For now, were crossing our fingers that my fertility was not affected..I’ve tried to seek out the fertility resources that are out there for us young-adult cancer survivors. But to be quite honest, there’s not much to work with. The realm of female viabillity post chemo-therapy is so individually complex that it’s hard to get anything concrete from a Dr. even a specialist. I’ve had one specialist tell me, “You should be ok” and another “why don’t you start trying now?”
Now the latter question has an extremely long list of not right now because. So that kind of led me to the “let life happen” mentality. I don’t want to live my life in a way that gives cancer so much credit. Cancer did take some things from me, but it also gave me a new outlook on life- and a strong passion for all things health/social justice.
For the mean time I will continue loving all things baby and spoil my niece Clare and all the other cuties in my life! Oh yeah and of course love being the mama of my Chazzy boy!
March 6, 2010 § 4 Comments
So on Thursday morning Carlton woke me up around 6am and told me to call my Mom, that he had texts from her that Shiloh was sick. I was in a bit of shock of course, as I was quickly awakened and really disoriented. I quickly grabbed my cell and saw two texts from my mom and sister. Both implied Shiloh was sick, but they were sent around 2am. Given I had nothing past that, I thought maybe he was ok. I ran to the other room and called my mom. She answered, and started to explain that around midnight Shiloh started to act very strange, crying wimpering and having his tail down. That she had tried walking him, but that during his walks he was biting down on his leash hard, and seemed to be going downhill quickly. My sister Becca had tried to let him out, and he tried to run away. This was not like Shiloh at all..Becca and I have always been scared that if he was trying to run away it’s because he was going to die..so my mom, Becca and her boyfriend Mike got Shi in the car and to the emergency vet on the otherside of Syracuse. My mom recalled, petting Shi in the backseat while Becca frantically tried to keep it together while driving.
They got to the vet, and they did an Xray. The Xray showed Shiloh’s stomach had flipped. They had to put him to sleep immediately. The Dr.’s were able to give him some strong pain medication, which made him very loopy but took the pain away so my Mom and Becca could have a bit of time to say Goodbye.
It wasn’t until that point in my Mom talking that I realized that he was gone.. Shiloh was gone. I lost it, sobbing and just overwhelmed by shock and grief. I immediately stated to to think, “no, it wasn’t supposed to happen like this”. See he had been diagnosed with a Sarcoma in January, and we had been told it was super slow moving and that his heart and lungs were strong so Shi would most likely die of natural causes. Stomach flipping is not a natural cause in my book. The other crazy part is Shi had a really bad habit of swallowing EVERYTHING, he has ate more underwear,washcloth’s, socks in his life- and never even needed a dr. Now how after all this, could this happen to him.
My next thoughts were for my Dad. He had been working out of town (he’s a lineman for National Grid) restoring power to people downstate since the big snow storm last week. My dad hadn’t been there to say Goodbye, which is something he had mentioned in conversation about Shiloh’s sarcoma- how important it was for him to be there with him when he went. I wanted to be there too, Shiloh was our family, our friend.
The past few days I have been overwhelmed by grief, for Shiloh, and for my mom and dad and Becca too. I also have been especially sad for Chaz my dog. Chaz just loves Shiloh so much. The first year I had Chaz we were living at home while I was going through chemo. So when Chaz was a puppy he has Shiloh to “teach him the ropes”. Because of that he has a lot of similar mannerisms and little quirks that Shiloh did. Chaz talks a lot, like Shi. He also pounces, and has quite the attitude. Which we love. 🙂 It will be tough to head home with Chaz in a few weeks and see him looking all over for Shiloh. I don’t know if I can even prepare for that..
I have also been so thankful to have had Shiloh growing up. Becca and I were really sad when our dog Bobby died when we were young. I was 9 and she was only 6 I think..so we begged and begged for a dog so when my Dad walked through the door that early summer afternoon after a day spent fishingand shouted, “SARAH, BECCA— I caught this big hairy fish” He then unzipped his jacket and out jumped Shiloh. We cried tears of joy and hugged Shiloh for what felt like days. We’ve both spent the past 14 years kissing him goodnight, tucking him into bed and always considering him when we left the house. When we left for college, we were so sad to leave Shi behind, standing in the window watching us drive away. It was really at that time that it became clear how important he was to my parents too. My mom had been his primary caretaker, because we really didn’t do anything but the occasional walk- so when we left for school Shi started getting more attention. It’s so hard to think that he’s really gone. If it’s so hard for me, I can’t imagine what the three of them are going through being home. I want to be with them, but I think it would be really hard.
Friends and family have been so supportive. One of my best friends has been Shi’s petsitter for the past few years, and her support/love/phonecalls/cards has been so wonderful. Carlton has been an unbelievable source of support. He grew to love Shiloh over the past 4 years that we’ve been together. So in that way, he is grieving with me. He’s let me share stories, laughs and tears with him- and just been giving me all the space and time I need. That is priceless. I am so lucky to have an amazing partner.
Shiloh was a funny, loving, caring and smart boy. We are all so sad to lose him, but we will not forget him ever. I am so happy he will get to meet a new playmate Bobby (our first dog) and a variety of cousins and most importantly he is now reunited with my Poppa. He loved Shiloh too! I hope they are all sitting around playing and laughing.
Loosing important people in your life, and in my family Shiloh is people- is extremely difficult. And I thank all of my family and friends for their prayers/love and support.
March 6, 2010 § Leave a comment
Wow, it feels nice to be on a new blog! I had previously been writing on another blogging website but hated the setup, and found it very tricky to navigate. So I have renamed myself, and found a new home. So here I am livingstronger on wordpress. Thanks to those of you who followed me, and welcome to new readers!
Livestronger was a term I coined while in treatment for LP-Hodgkins Disease in 2007. Not super original, given the huge Livestrong following, but to me livestronger is of great significance! I had been living strong since birth people! So for me living stronger is something that’s been a bit of a mantra since that fateful day the “c” word rocked my world. For the title of this blog I decided to go with livingstronger for a multitude of reasons, the main one being so Lance doesn’t come knocking on my door.
You also may notice the ladybugs on my page. Ladybugs are my lucky charms, but more on that later! I promise!
I am working this weekend, which means I have a lot of downtime. 1 weekend a month I work for the American Cancer Society, at the Boston AstraZeneca Hope Lodge as a weekend manager. It’s 48 hours of lockdown, thank god for the beautiful people and comfy surroundings. If you don’t know about ACS or Hope Lodge, you should totally take a commercial break from this blog and google. Hope Lodge’s are all over the country, places where people who are traveling to places other than home from treatment can stay for free. They are a wonderful resource, and there only around because of the generous donations made to ACS each year. We always have a wait list, and it’s hard to see people turned away- but it’s beautiful to see people walk in and see the weight on their shoulders get a little bit lessened just by giving them shelter. There are very few other low/no cost options for people here in Boston despite the need.
I’ve been working here at the Lodge for 1 year and a half, and it’s very interesting to be here as a cancer survivor. I think I am the only survivor on the small staff! Which I think gives me a unique perspective..
Aside from this part-time gig I work full-time for Partners In Health’s domestic project, PACT in Dorchester. Yay DOT! I am the Executive Assistant to the Executive Director as well as Office Manager/Grants Lady/Caterer and anything else you can think of. PACT does amazing work with disenfranchised population who are dealing with HIV/AIDS, Diabetes and other chronic illness. Many of the PACT clients also suffer from some sort of behavioral/mental health problem as well. My co-workers are the people who keep me loving my job. I work with amazing Community Health Workers and administrators. I feel truly blessed to be doing the work I am doing there. Although my role is very hands off the direct service, I still feel honored to be learning so much from so many wonderful mentors.
Ok enough about me for today. 🙂