Surgery Rescheduled

The surgery has been moved from Monday the 23rd to THIS Friday, December 20th. Jeepers. So much to do, so little time.

Many people have been asking what they can do to help. I appreciate your thoughtfulness and willingness to help. I will update the blog as I know what I need. It may require assistance with periodic light meal prep, pharmacy runs, grocery runs, transportation to check ups as I do not think I will be driving for at least a couple weeks. I will let you know when I figure it out myself.

So for Christmas I’m giving my tumor the gift of an all expenses paid trip to a biohazard dump. BYEEEEEE.

 

Surgery is on the books

Thank you again to everyone for checking in on me over the past few days. Your kindness is appreciated 🙂

I’ll keep this one short and sweet.

I will be having surgery to remove the tumor this coming Monday, December 23rd first thing in the morning. My oncologist, Dr. Robison, will be performing the procedure at Women & Infant’s Hospital in Providence. I imagine that I will be in the hospital for a few days (I’m not entirely sure how long) but I plan to recover at my apartment in Providence upon discharge. Once I am coherent enough to string together full sentences, I will update the blog. My parents will be staying in the area for a few days following my surgery to help me out as needed.

For those of you lucky people that received incoherent, pain killer induced, phone calls from me last time…expect it again because I have zero memory of it and tend to believe that I do not have control over what I do with my phone on IV meds.

Enjoy your holiday season everyone! Don’t drink and drive, pretty please.

 

 

 

A zebra amongst horses

You know your life is jacked up when you are delivering the following as “good news”.

Good news everyone! I went to Mass General in Boston yesterday, escorted by the lovely Sheila Enderby (my chemo nurse). We had a consult with Dr. Dizon, a former W&I colleague of my oncologist. I entered with the intention of learning about a trial chemo that I qualified for at the recommendation of my gyn. oncologist.

I sat in the little examination room with Sheila before the Doctor came to see me. Anxiety through the roof. A sweet, 24 year-old medical student came in and took an extensive history. As much as I liked her, my nerves were getting the best of me, and I wanted to rip her head off if she asked me ONE more time the age of my first menstrual cycle. I think she was nervous and trying to be thorough. Seriously though, how many times do I need to answer the same questions? After the medical history interrogation, the doctor finally came in an hour and 3 minutes later (but who was counting?).

When Dr. Dizon walked in, I instantly loved him. He is a small, stylish, Filipino man. He wore a purple velour sport coat and matching purple socks. His outfit was completed with a bow tie. He put the CT scans on his computer and we looked at the images together. He showed me exactly what I was looking at and pointed out where the tumor is. You could tell that he was surprised and relieved to see that it was small and only in one location.

He confidently told me that it was his professional opinion that treatment beyond surgery is unnecessary at this time. I think we all let out a collective sigh of relief as there were talks of chemo initially. Cue twisted thinking: Thank goodness it’s only a little bit of cancer! Thank goodness I only need another major abdominal surgery!

He said “On this earth there are horses and there are zebras. You my dear, are definitely a zebra.” This is a really polite way of saying that it is effing bizarre that I have the disease that I do. He also said something that helped me to reframe my thinking surrounding this illness. He is a straight shooter and flat out told me that this may not be the end. This could be the beginning of many more recurrences. He basically said to consider it to be like my own version of diabetes. It’s not ideal, it’s not good, but as it comes we will treat it to the best of our ability. If it comes back we cut it out. Grow tumor, find tumor, zap tumor, lather, rinse, repeat.

So many times over the past week my friends and family have heard an emotionally-taxed me say “is this really my life?” Dr. Dizon essentially said yes, this is your life, but we will do everything we can to manage it. Before the goal was to never do this again. I was sure that my cancer was one and done. His honesty forced me to embrace the fact that, yup, this is my reality. Who knows, maybe I’ll never have a recurrence again, or maybe I will. Either way right now, it’s not a death sentence.

This has not stopped me from thinking about mortality. I know you’re thinking, “oh stop you’re going to live until you’re 96 like the rest of us poor souls. Stop being dramatic.” I am sure that I am scaring my mother right now by writing about death (Sorry Mom, but don’t worry. I still plan to outlive you). I had a long existential life talk with Sheila yesterday and I realized that I am less afraid to die and more afraid to live an unfulfilled life.

It may sound extreme to think about but sometimes you have to go to that dark land of “what if” sit with the irrational fears, grieve, make peace, and come back up for air. So that is what I am doing. Problems only arise when you get lost in the land of “what if”. Do not fret my friends, I do not intend to stay there. It’s healthy to visit but not to move in.

My biggest fear surrounding living with the prospect of continued disease is having it prevent me from reaching my goals. I’ll be damned if cancer-recurrence prevents me from traveling, publishing written works, celebrating the accomplishments of friends and family, growing professionally, watching my students graduate, adopting children, and/or marrying my future best friend (TBA). If living with disease means needles, blood work, surgery, recovery, hospital beds, CT scans, and medication, so be it. After last year, short of getting shot in the face with an AK-47, I can handle any physical challenge that comes my way. I just don’t want to miss out or continually feel like my life is on hold. Although looking back at my photo review of the past year I guess I did a better job of “getting busy living” than I thought. Perhaps this is all within my control more than I think.

End rant.

Anyway, I will be channeling my inner Esther Garbus as I approach surgery #5 with feisty energy. Perhaps I’ll also channel the “I don’t deserve this crap” anger into scaring the piss out of my tumor so it never grows back.

On a lighter note I had the most lovely day in Boston post-oncology consult with Sheila. My chemo nurse, on her day off mind you, took the time to come to my appointment with me cross state lines and proceeded to take me out for celebratory cocktails after at the Liberty Hotel:

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This is the selfie we texted to Dr. Robison, my primary oncologist, after receiving news of no chemo:

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I am so lucky to have this medical team. They are family. I don’t know many other medical professionals that care more about their patients than these people. I love that I can go to an oncology consult and follow it up with lunch and cocktails with my nurse. We can talk about life and death and laugh about it. It’s remarkable.

I’ll end by saying thank-you again for the continued support! I will be updating the chronicles as details unfold regarding surgery and recovery timeline.

With love and gratitude,

Jess

Here we go again

I am sorry to share this news via my blog as it is highly impersonal but I honestly don’t have the energy to retell this story. After many months of successful cancer treatment and a stable CA-125, a recent blood test and CT scan has revealed that I have had a recurrence.

There is a small mass near my liver that my oncologist and the tumor board are concerned about. This will require another major surgery (unfortunately it cannot be laparoscopic as she must physically move around my liver). It may also require additional treatment whether it be a different kind of chemotherapy or some sort of infusion or new drug. At this point I am meeting with my oncologist and another in Boston to gather information to formulate the most effective treatment plan. I do not yet have a timeline for what is happening when but I will be regularly updating my blog (http://boldbaldbattle.com, tell all your friends to hop along for the ride).  Per usual my work has been very loving and supportive.

My emotional and mental state at current is stable. I’ve gone through the whole cycle of disappointment, sadness, fear, and anger. Unlike last time I’m pretty stuck on anger. Luckily, as I learned once before I have a worldwide, giant, support system and have no doubts that there will be another overflow of positive energy.

I also think I should say for the record, because I got in trouble with more than one person for this, I will NOT take Big Daddy Taxi to any doctors appointments or treatment this time.

My chin is up and so are my fists.

Smile! You’re on Cancer Candid Camera

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Was diagnosed with cancer (note my swollen belly above. That’s me sucking in. Full of a big tumor and 3 liters of fluid)

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So my friends and I said “eff it” and had my 25th birthday early and threw a rager. Here are the tamer shots.

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I went under the knife on December 4, 2012 for the first of several surgeries. I had a total abdominal hysterectomy. Luckily I had my big brother by my side with my parents before the surgery. In the months following I was cut open a few more times to insert an intraperitenial port and a central line. I learned to embrace the beauty of scars.

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Scars are nothing in comparison to the torture that is the NG tube. WORST EVER.

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A few weeks after surgery the chemo started at Yale.

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In preparation for the impending doom of losing my hair, my mom and I headed to the salon and had some fun trying on wigs and trimming my long locks into something more manageable. I also learned that blondes do not have more fun. Yikes.

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I was reminded by many wonderful friends that “bald is beautiful”

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But that didn’t stop my family and I from having some fun with a few novelty “cranial prosthesis”

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It also didn’t stop me from making my friends try on my wigs for my amusement (p.s. they are all red heads/blondes)

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I rocked a lot of hats after I lost my hair. I grappled with my perceived stigmatization of “cancer patient” without my hair.

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But eventually I put it out into the world.

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Sometimes in the midst of physical and emotional pain and the uncertainty of my condition I got scared. Luckily I had the support of many to keep me afloat. I’m smart to have kept some evidence.

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Sometimes the advice came from the universe.

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Nothing compares to the wisdom of your parents.

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Even on Valentines Day in the hospital I got by with a little help from my friends. Stack was the BEST valentines date…

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…and chemo date…

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…and St. Patricks date.

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When my immune system was compromised, even my tiniest of friends found a way to cheer me up!

Regardless of chemo, surgeries, and general unpleasantness my friends, family and I were determined to have fun…

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And with the fun came some rewarding hard work further fueling me to still pursue my dream of finishing a half-marathon. For now, a messy 5k will do…

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Thank goodness I worked so hard to gain my weight and strength back because I had some weddings to boogie at!

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I also didn’t have any time for cancer because I needed to go on vacation to California to see my brother…

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I also had to jet set to Wisconsin for an Australia 2009 reunion!

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Where I learned how to drive a jet ski and was showered with paper cranes 🙂

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Cancer had to go on the back burner because I also had to casually hang out with New Politics and The Mowgli’s…

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The most important “rockstar” I met all year was hands down Eff Leukemia’s own Tony Lanza. He kicked Leukemia this year and after many months of being “cancer pen pals” we finally met! Best day.

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But nothing was better than my biggest accomplishment of the year:

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Finding out that I was cancer free and announcing it to the world (despite Chris showing up late and ruining everything hehe)

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And as the result of such good care from my parents, brother, oncologists, surgeons, nurses, PA’s, family, friends, colleagues,  and strangers I am here today. Clearly not many of my darker times were documented. It wasn’t all sunshine but I am really lucky to have captured so many moments that were wonderful. My heart is very full right now.

THANK YOU from the bottom of my heart to everyone that ever cared, worried, sent love and support. It’s been a hell of a year.

Diagnosis-aversary: One year later!

It is difficult for me to wrap my head around the fact that exactly one year ago today I was sitting in a hospital bed. A doctor looked me dead in the eye and told me that the “suspicious mass” found in my abdomen the day prior was a 12 centimeter malignant tumor. I looked at my parents stunned and watched their hearts shatter. In that moment it killed me more to see the fear in my parent’s eyes more than the diagnosis itself. No 24 year old should have to face their own mortality but no parent should EVER have to hear that their child is dying.

In the matter of 48 hours I went from being diagnosed with “just gas, you’re fine” to “You have cancer.” We had so many questions that the doctors couldn’t provide answers for. No one told me that I would die, but no one could answer when we asked if I would live.

With uncertainty like that  you can understand how I am completely dumbfounded by the fact that today, 365 days later, I am sitting in my favorite coffee shop by the window, eating a bagel and sipping on a hazelnut latte. A year prior I was faced with the predicament of having chemo first or surgery first. Today, my most frightening decision was whether I was going to order a spinach or cinnamon-raison bagel (totally went with spinach).

Sometimes I go back in my head and think about the more difficult times. The pure physical exhaustion. I think back to vomiting, abdominal pain, falling down, scar tissue forming and breaking up, NG tubes, needles, that nauseating hospital smell, the way my scalp ached as my hair suddenly fell out,  the beeping of the pumps on a chemo IV, the unpredictability of my bowels (ask any cancer patient and they will tell you what’s up)…this list is endless. I also think of the moments where I was immersed in depression and feelings of helplessness. These feelings were especially pervasive when facing the  disappointment and angst of not being able to bear my own biological children.

Sometimes I will have flashbacks when I’m driving home from work or trying to get to sleep of some of the darker times. Those raw emotions still linger and will be slow to heal. Even though it’s physically over, it will never be the same emotionally.

Despite these dark, lingering, memories, cancer gave me the ability to make very pure meaningful connections with others in a way that I don’t think I could have otherwise. I felt unmatched love, unmatched kindness, unmatched friendship. This came from family, old friends, new friends, colleagues, strangers for no other reason than we are all part of the human condition. When you are facing your own mortality, not much else matters. The petty bullshit suddenly seems a little less important. It’s not to say that I don’t have my moments. I still sweat the small stuff but perhaps not to the degree that I did previously.

Whenever I talk to other people about my experience I often hear: “I don’t know how you did it! I couldn’t have.” Here is a little secret. You could. I hope you never do, but you could. The mind-body connection is incredibly powerful and with a lot of science, a lot of luck, and a lot of love it’s possible.

One very important message that I want to put out there is that “survivor” is a funny word. I use it for lack of a better term but it is an awkward label to embrace because it implies that I did something that those who died from this condition did not. I’m not a special and unique snow flake. I just did what I was told to do to the best of my ability. There are people that smoke, drink, piss and moan all the way through their cancer and live for years. There are others that have great attitudes, eat organic, meditate, exercise, and embrace emotional support who pass quickly. When it comes down to it, it’s just science and dumb luck. If ever faced with cancer, you do the best you can, to the best of your ability given your constraints and leave the outcome to a power greater than yourself.

I am lucky to be here, I am grateful to be alive and for first time in my life, I am truly happy to be me.

Do you feel the love? I feel the love. Come on, come on…

Exactly 9 months ago today it was Valentines Day. But not the hearts, flowers and all the bullshit kind of day. It was more like a “12” on the 1-10 pain scale, intestinal obstruction, new chemo at a new hospital kind of day. I could say with certainty that it falls in my top five worst days of all time.

It was my third round of chemo but my first infusion at Women & Infant’s hospital. My roommate, Kelly, was kind enough to bring me in early that day for an emergency 7am visit to the doctor having been up all night with excruciating pain in my abdomen. Not the best way to start a day of chemo (at a new facility no less). Little did I know that this emergency visit would lead to a ten day stint in the hospital (many of those days being NPO). Luckily my sweet Stacey volunteered to be my Valentines date and stayed with me the entire night when I got admitted.

I’m jumping ahead of myself. I swear I have a point here. Back to the chemo infusion-

I get sat in a little room with two recliners and my chemo nurse walks in and introduces herself as Sheila. She’s tall and very eccentric looking. Edgy, multi-colored hair and a laid back but confident and comforting approach. I’m going to be quite honest with you, the actual infusion was a skosh fuzzy because Sheila hooked me up with a solid dose of pain killers. Despite my hazy memories of the actual few hours Sheila took care of me, I’m going to infer that she did a great job.

Sheila continued to see me almost weekly. We got into the “chemo rhythm”. She knew I liked to check my work email before my Benedryl nappy-time cocktail so she would always save that for last. Her enthusiasm for my CA-125 improvements matched my own and when times were not-go-great she was always honest but reassuring. I don’t know if it was fate or luck but I bagged myself the perfect chemo nurse.

As the weeks went on our chemo routine turned into a sincere friendship. I knew this with certainty when the girl waited an hour after her shift was over to find out my CT scan results on a FRIDAY and proceeded to invite me to the bar, buy me a beer, and tell me that I was cancer free.

Nine months later, Sheila and I are together again but not for a port saline flush or further treatment. We’re at a concert, throwing back a beer, and enjoying some great bands. How appropriate that exactly nine months later we’re enjoying a high energy, upbeat, evening out together. Shocking considering that she was actually poisoning me for many of those months…

It’s even more appropriate that we’re seeing The Mowgli’s. A band I admittedly only got to hear of this past year but one of their more mainstream songs “San Francisco” kept me upbeat during some really dark days. Watch this and don’t smile. I dare you (you won’t be able to)

I must admit that I wrote everything above this link prior to going out tonight. I was just so excited to see some great bands live, that was enough for me. Never did I imagine what would happen after the show. Sheila remembered me saying that San Francisco was a meaningful song for me and secretly arranged with her friend from the radio station, 95.5 WBRU, for me to meet The Mowgli’s!

I honestly thought we were just going to meet them on the fly because her friend worked for the radio station hosting the concert. It turns out everyone, including the band, has known about this for weeks and they even autographed a bunch of gifts and put it in a WBRU gift bag for me! We hung out for a while after the show and I was quite literally shaking. It may have been a combination of being starstruck plus them taking the time to be so nice to me when they really did not have to be at all. We hung out, talked, ate fortune cookies, and I even met their dogs. I couldn’t have been happier and more overwhelmed.

More than anything I am amazed at Sheila for knowing how meaningful this would be and making the arrangements just to put a smile on my face. She is remarkable. There is a special place in heaven for a person like Sheila Enderby.

Check it out!

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I can now go to sleep a VERY honored and happy girl.

Create what you need (Part II)

A problem that I have always had as long as I can remember is asking for something that I want/need. I couldn’t tell you why. In childhood I would see something at a store and just hope that my mom telepathically knew. Oddly enough my mama does have what I believe to be telepathy and can detect me in “crisis mode” from hundreds of miles away. WEIRD. (It’s a far better skill than knowing what barbie doll I liked in the store.)

In getting sick I was pretty much forced to tell people what I wanted or needed because for several months I was on “independence probation”. If I wanted to go from my bedroom to the living room, I needed my Dad to spot me so I didn’t tumble head first down the stairs (and I’ll be damned if I tumble and don’t stick the landing!). Now that I am back to normalcy and can do everything that I could before I got sick, I need to remember that the same rules apply. I must ask for what I need and what I want when it comes to my emotional wellbeing. This ties back to my last few entries about creating what you need. I am pleased to say that in a quest to meet other young people with similar stories, I not only helped to create a Providence meet-up, but it became an official Stupid Cancer Meet Up on the http://www.stupidcancer.org website!! So legitimate.

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All I did was put my feelers out in the right forum and in a matter of 9 days the event came to be. I am really excited to meet other likeminded people with similar life experience. I think it will be a healthy step in the right direction in adapting to me new normal. I am glad that I asked for what I needed. (Shout out to Jocelyn that helped to make this an official event! And for being doctors appointments being spaced out to every 4 months!)

Speaking of new normal…

Many of you have told me that you have been following my friend Tony through his journey through http://effleukemia.com/

He just updated his blog for the first time in a few months and I am so proud to share that he finished in 14th for the NYC MS Ride and has officially registered for the 2014 NYC Triathlon. I am so proud of how far he has come in the midst of such dark times. All I have to say is Tony Lanza gives ZERO effs.

Create what you need

My mother (amongst others) is always kind enough to post a link to my recent entries on Facebook. When she reposted my last entry she summarized it better than I could myself by saying: “Moving on means creating what you need sometimes.” She hit the nail right on the head with that synopsis. High five Mama!

In my last entry, I expressed the need for camaraderie with other young adults facing similar circumstances. I also talked about the need to pay it forward in some way. Here are my developments thus far!:

1.) Camaraderie:

After posting on the StupidCancer Northeast message board I received a lot of feedback from other twenty-somethings looking for a similar experience. I began corresponding with another young woman in Providence and we organized a Stupid Cancer Providence meet up! (Thanks Jocelyn!) I don’t know if the turnout will be big but even if it’s just 3 or 4 people that would still be 3 more people that I didn’t know previously who have the inside perspective on such a unique experience.

That being said, on November 20th, 7pm @ Fat Bellies in downtown Providence, we will be hosting a Stupid Cancer Northeast Meet Up. It is geared toward Rhode Islanders but anyone in Mass or CT that is willing to make the trek is more than willing to come! This will be a casual opportunity for young adults that have or have had cancer to mingle. We can talk about everything from the icks of chemo to the BULLCRAP Red Sox play that ended the game last night. I am going to reach out to my social workers at W&I to spread the word as well.

Friends and supporters are also welcome! This is NOT a fundraiser, just a “hang out”.

2.)  This IS a fundraiser

Donna, the president of the RI Chapter of the National Ovarian Cancer Coalition was kind enough to respond to my inquiry quickly and was overwhelmingly supportive of my fundraising proposal. I need to complete paperwork on both ends but it looks like we will be teaming up to host a charity event to benefit the RI NOCC.

The NOCC will provide materials to educate visitors on the signs, symptoms, and support systems for OC. Like I said before even if we raise 100 bucks and one person reads the damn flyer, we are an inch closer to finding preventative measures to screen for OC.

Once I have the paperwork confirmed I will share the details, stay tuned!

 

As my Mom said, “you create what you need”. These events are small and a blip on the radar in the grand scheme of things but if they help a little, I’m satisfied.

“We’ll go up, up, up and everything will be just fine”

I am feeling such a surge of positive energy! I don’t know where it came from, or why, but I am not one to ask questions. If I am feeling on top of the world, I’ll take it. Perhaps it is because I have been channeling the vibrant and brave energy of Zach Sobiech by listening to his song non-stop today:


I am in week three of the Transition to Survivorship group. I find that not a ton of what we  cover fully applies to me. For example, this past week a representative from Livestrong came to teach us exercises to help with cording and lymphoma (common in breast cancer patients). She is operating under the assumption that we are all breast cancer survivors. This is true for most of the group, but not all of the group. I am happy to see that some members reaped the benefit of her presentation so it was not at all a waste of time. Part of being in a support group is supporting each other more than getting support for yourself.

What I have gained from this group is an ongoing opportunity to be introspective. We often talk about “what is my place in all of this?” more than “why me?” I am certain that every woman in this group has anger and resentment regarding this illness but generally I hear people saying “what can I do now?” in a productive sense.

I think about this constantly. I lived. My chances of dying were huge and apparent but I got to live. What now? This is two dimensional. One dimension is “what do I need now” and “what can I DO now”.

What I NEED:

What I need is the camaraderie of young cancer survivors. I need to talk to an interact with other young people that are facing/have faced this disease in one way or another. Today I took action. I joined the www.studpidcancer.org facebook page for the Northeastern chapter. Stupid Cancer is an organization that supports and advocates for young people with cancer. There was a regional conference in Boston that I missed but other than that I haven’t seen much activity in my area. So I took the plunge and decided to post on the facebook page. I simply asked if there were any other young people in the Providence/Boston area that are involved in Stupid Cancer events or meet ups. It turns out that I am not the only one because within a few hours I had nine responses! It seems as if I am not the only young survivor feeling a little isolated. I proposed that it would be fun to have a little meet up event like dinner/drinks/bowling/etc. The social aspect is really important often more than an intense support group. It’s just really nice to know that someone knows, REALLY knows, what you are going through. In the upcoming months I hope to organize something between Providence and Boston to get together some with young survivors for a fun evening. I will keep you posted if this comes to fruition.

What I can do:

Now that I am healthy, strong, and have my normal life back, I am in a position to give back. I expressed this to my group on Tuesday. I feel like because I was so well taken care of, I owe the world in some karmic way. Little by little in small ways I will repay the kindness of others by putting that energy back into the world to the best of my ability. Thanks to the Livestrong rep I learned that I can host a fundraising party with a local business. I have emailed the local RI chapter of the National Ovarian Cancer Coalition to propose an idea for a fundraising/awareness event in Providence. I do not want to reveal too many details until I have confirmation that I can represent this charity as a third party fundraising host but my fingers are crossed that it works out. Again, I will provide more details as they unfold. Even if I raise $100 it is a tiny bit more that we can use to find preventative care for women to screen for Ovarian Cancer.

Also- I want to publicly congratulate a dear friend of mine, Eli Dunn on his engagement to his beautiful girlfriend Pam. From the moment I met Pam I knew she was “the one” I wish all the happiness in the world to a wonderful couple.

Finally, I want to wish my Dad a very happy birthday! I will always be your little girl. Thank you for the love and support, always. Have the best birthday of your life!!!!