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.

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“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!!!!

The wonderful world of survivorship

I had two visits to Women and Infant’s hospital last week. Neither were check ups although, in the words of Eli Dunn, one could be considered a “check up from the neck up”.

On Tuesday morning I met with Jessica, the genetic counselor. As you may remember from a previous entry my first round of genetic testing came back negative. Results for the second test came in and they were also negative! This basically covers about 96 % of the genes that we would be potentially worried about in terms of mutations that increase the chance of developing other cancers.

In non-medical terms, the genetic counselor basically told me that since I am negative for the BRCA mutations my chances of developing breast cancer are about the same as the general population. This is great news! The genetic counselor went on to say that there is a final test called the Ovanext test that tests for mutations in 21 other genes. The downside is that this test is fairly new in medical science, within the last 3 years. Depending on the gene mutation present we do not necessarily know the risks and implications of the mutation .

I am mulling over the decision to do the test. It will ultimately be dependent on the out of pocket cost. Unlike the BRCA testing, insurance does not necessarily cover the cost of a test like this because there is not enough data to support its findings.

To me, it really doesn’t matter what the results of the Ovanext test are because it likely would not tell me much more than I already know. The only exception would be if there was a mutation in one of the five genes that are connected to Lynch Syndrome. If there was a mutation in one of those genes, the lifetime increased risk for colon/uterine/stomach cancers are greater than the general population. Lucky for me I ditched my uterus months ago so we can cross that one off the list. If there was a mutation we would know to take preventative action by having an annual colonoscopy and endoscopy that would look for polyps before they got out of control.

As I have said before, based on the BRCA testing and my (lack of) family history, my genetic counselor and I are inclined to believe that a genetic mutation is unlikely; however, it is encouraged to pursue this line of testing due to the rare nature of this illness at a young age.

Once I hear from my insurance company I will make a decision. Another factor to consider in pursuing this testing is not what it will do for me, but what it will do for the future of medical research. In medical science, there will always be a guinea pig of sorts. Even if the OvaNext testing does not yield practical information for my own treatment, my DNA sample can contribute to the overall data pool. Eventually, enough data will be collected that trends can be found and my hope is whether it is five or fifty years from now, another young person will have better preventative care because of that. It will ultimately come down to out of pocket cost but I hope that I can make this minor contribution for the sake of science.

Switching gears-

I returned to Women & Infants later that evening for my first night in the “Transition into Survivorship” group. This will go on for five weeks and is meant to provide tools to assist in the transition into “the new normal”. We have a really wonderful group of women there. Mostly breast cancer survivors but there is one older woman that had ovarian. I believe that I am the youngest in the group, but there is a great person in the group closer in age to me. I actually met her during chemo although I do not fully remember (I was probably in my Benedryl haze). I feel connected to her on a level that I haven’t figured out yet. When I was speaking, I could see in her eyes that she not only heard what I was saying but also felt it. I look forward to getting to know her better.

I felt really comfortable with this group of women and when I was asked “what do you want to get out of this group?” the first response I had was “camaraderie”. I can see that need being met with this group of warm and strong women. In the first meeting alone we laughed and cried together. I see it being a beneficial few weeks.

One point that I want to highlight is that despite the trauma that each woman has endured, we all had nothing but wonderful comments about our treatment at W&I. Nothing about the stories everyone was telling screamed “poor me”. It was all about how lucky we were to have such great care within the family that is Women and Infants. That feeling was reinforced personally, when I walked into the room and spotted Allison and Diane, two social workers that I have grown close to. We were mutually excited to see each other. Had we been in any other setting outside of a hospital you would have thought that we were old friends that just happened to run into each other.

Hearing everyone’s story is so powerful. I find myself getting lost in their stories as I can picture it in such vivid detail. I feel the paralyzing fear associated with those haunting words “you have cancer”. I feel the anger. I even feel the needle pricks of an accessed central line. I feel the strength and the courage, and most importantly the determination of not letting cancer win. This group means a lot to me because I know that people are in the same “place” as I am, and probably feeling similarly. You never want anyone else to go through this but you find odd comfort in knowing that someone else feels your experience so deeply.

On a personal level, the facilitating social worker said something the resonated with me. My second response to “what are you looking to get out of this group?” I shared a life challenge that essentially has no immediate impact on my life, having children. Despite it impacting me more in the future, it has wounded me so deeply. I am only 25 and I am certainly in NO hurry to be a parent but goddamn it I wanted the option for later on. I shared with the group that I felt like something was taken from me. The social worker framed my disclosure by saying “You are mourning the loss of the future you thought you had”. Nothing was really taken from me but my own expectations. If I had been conditioned all of my life to believe that I wouldn’t have children of my own this wouldn’t be an issue. This ties back into developing my “new normal”. My old normal may have included having my own children but my new normal will involve being a mother by other means. I will eventually get there but I think this group will ultimately help me to cope with the anger and resentment I have surrounding this perceived loss.

Now that I’ve brought down the mood I want to end on a warmer note. I am so glad that I decided to do this and I look forward to the weeks to come.

Finally,

HAPPY BIRTHDAY ADAM SULTAIRE!!!! I hope my big brother has an incredible birthday! For everyone reading out in San Jose, limit him to TWO swirls.

“I’m a tortoise Bro”-anonymous CMR runner

Let’s get facts straight. I am no perfect portrait of health and fitness. I try to work out a few times a week and a I try to make healthy food choices as often as I can. But I am certainly no dedicated paleo-eating/ marathon-running/calorie-counting/work-out-at-5am kinda girl. I just don’t have the kind of discipline and patience required for that (but I commend others that do!) I do my best to live a healthy lifestyle. Over the past few years I have been more active than I ever was and learned to actually like running. It makes me feel accomplished and athletic (when I was certainly not before). Let’s just say I didn’t need Lucy to pull away the football to look like Charlie Brown when attempting anything athletic.

When I got sick last year, even before I knew that I had the big ‘C’, I struggled to maintain the level of physical fitness that I had achieved post-college. This was due to the several liters of tumor fluid sloshing around in my tum tum (yeah, I said tum tum!). Through the hysterectomy and chemotherapy it felt like more of a pipe dream to be running again. On December 4, 2012 I couldn’t walk more than three steps without nurses holding me up. On September 28th, 2013 I ran 3.1 MILES at the Color Me Rad 2013 5k. 297 days after extensive abdominal surgery that resulted in the loss of muscle function in my left leg, I was able to gain back the strength to run 3.1 miles. I wasn’t the fastest runner there by any means, but I did it.

I do not think I would have accomplished this goal without the help of two people specifically: Meredith, my occupational therapist in Torrington, CT and Matt Weese, my personal trainer. These people never once gave me the impression that I was too damaged to reach my goals and for that I am so grateful for their support, encouragement, and patience in rehabilitating my leg and strengthening my body (and spirit!).

Here are some highlights (and shout out to Sarah Breen for being an awesome running buddy that day!):

CPVD13_10_01776_L CPVD13_03_02057_L CPVD13_10_02111_L

 

I am looking forward to doing my third Color Me Rad next year and hopefully move on to an intermediate race such as a 10k or another physical challenge like a Spartan obstacle type course (NOT Tough Mudder. Forget. That. NOISE).

I would also like to acknowledge my buddy Tony for getting back on his bike after battling Leukemia for far too long! Little by little, we’re getting there Tony!!!

I hope everyone is enjoying this crisp autumn season and staying well!