Tag Archives: Ovarian cancer

January Unfolds

Posted on by

1

A few people have mentioned that they were concerned that I haven’t been writing. Not to worry! I am alive and well. The past couple weeks of recovery have been great and I more or less feel back to normal. The only issue I have is still sleep related. I need to figure my sleep issue out quick because I go back to work in ten days and I must be bright eyed and bushy tailed for 8:30 am (thank goodness for free tea & coffee in the Gulski dining room). ZzzQuil has been my most trusted sleep aid but it also makes me sleep for 10-11 hours at a stretch so that is no good. I am sure that when I am working full days again I will tucker myself out enough to be on a more regulated sleep schedule.

So what have I been up to over the past few weeks? I have been taking advantage of programming at the hospital. For example last week I did a meditation/art group. It was SO relaxing. There was about 20-25 minutes of guided meditation and deep breathing. After that the instructor put out paper and paint and said: GO! We were free to create whatever came to us. Mine ended up being some sort of fierce fire goddess? I don’t know where she has been hiding but I definitely unleashed her on canvas.

 

Image

I loved how therapeutic the expressive arts session was and have done a little bit of painting at home as well. I’m no artist but I think I would have made my Grandma Esther and Uncle Eddie proud. I come from a long line of musicians and arts and I am mediocre at best in either category.

When I am at home I try my best to answer emails from my students. I am getting antsy and cannot wait to return to the office. I have tried to sneakily work my way back in but my director is looking out for my best interest and has told me to stay home until the return date established by my oncologist. I’m only a little more than a week away! Only a few short days until I can return to bantering with Krystal through my office wall and demanding that we have a window installed between our offices. Even though this time of the semester can be a bit crazy I certainly miss the face to face interaction with students. 

Otherwise I have focused my attention to my fundraiser which is fast approaching! I am so humbled by the number of people that have RSVP’d and expressed interest in contributing! I sat down with Donna, the president of the RI chapter of the National Ovarian Cancer Coalition and we hit it off. I am very interested in the work that this organization does and look forward to participating in their OC walk in September. She told me that at the walk they used to have a moment of silence for our departed OC fighters. They have since replaced the silence with a new tradition. Making as much noise as possible!!! OC is nicknamed “the silent killer” so I admire Donna and her team for wanting to take the silence out of the equation.

What struck me the most about my conversation with Donna was hearing her niece’s story. Her niece, Jessie, was diagnosed with Ovarian Cancer at age 18 and lived vibrantly until the very end. Her story left me a bit more than misty eyed. I want to use this opportunity to fundraise for a cause that has significantly altered my life. Now it has a second purpose, to honor the life of a young woman that meant so much to this community. I wish I had the chance to meet her on earth but I know that she is with us, breathing life into what we are doing. 

If you are thinking of joining us the details of the fundraiser can be seen below! Wayland Square is a great little neighborhood. If you’re looking to make a night of it perhaps you can grab a drink or dinner at Farmstead or Redstripe then make your way over! 

Image

There will be light refreshments served and free LIVE music courtesy of the ever talented ladies of The Sugar Honey Iced Tea. Music will begin after 7:30!

Image

 

Again, if you cannot make it you may still make an order over the phone:

1.) Browse a beautiful selection of jewelry at: www.alexandani.com and make your selection 
(*Please note: the NOCC will NOT receive 15% proceeds on any discounted items or items from the Charity by Design collection)

2.) Call: 401-919-5467, the location of our fundraiser between 7-9pm EST and an Alex And Ani representative will take your order. Please tell the store representative that you are calling in support of 
The National Ovarian Cancer Coalition fundraiser! Your order will be mailed to you!

I am excited for this event! I cannot wait to see everyone there!

 

Shop for Ovarian Cancer Awareness!

Posted on by

2

TEAL ALL YOUR FRIENDS! Support the Rhode Island Chapter of the National Ovarian Cancer Coalition (NOCC) by participating in a fundraiser I am hosting on February 5th from 7-9pm EST at Alex and Ani! Conveniently right before Valentines day 😉 Pick up a little something for your loved ones and support women’s health! 

Image

I would love to see every one of your smiling faces at this event but if you cannot make it, you can still help us!:

1.) Browse a beautiful selection of jewelry at: www.alexandani.com and make your selection

(Please note: the NOCC will NOT receive 15% proceeds on any discounted items or items from the Charity by Design collection)

 

2.) Call: 401-919-5467, the location of our fundraiser between 7-9pm EST and an Alex And Ani representative will take your order. Please tell the store representative that you are calling in support of

The National Ovarian Cancer Coalition fundraiser! Your order will be mailed to you!

I look forward to seeing you there!

 

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

Posted on by

3

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!!!!

Health Update: 9 Months Later

Posted on by

1

This past Friday I had an appointment with a genetic counselor at W&I Hospital at the recommendation of my oncologist and the insistence of my mother. A genetic counselor’s job is essentially to help identify genetic disorders and provide guidance to families based on the presence of a genetic disorder.

In my case, we are looking for the presence of the BRCA1 and BRCA2 gene mutations. If I test positive the likelihood of developing other types of cancers are increased. My understanding is that if you are diagnosed with ovarian cancer and carry a harmful gene mutation the chances of developing breast cancer is much higher, about 87%. Carrying the gene has implications for both myself and members of my family.

If I were to test positive, they would then encourage one of my parents to test. Let’s say for example that my mom then tested and tested negative. We would then know that the gene mutation came from my dad. We would then encourage my brother to test for the gene as it could potentially negatively impact him or his future children (particularly if he were to have a daughter). BRCA genes do not skip generations. Although you may carry the gene it does not mean that you will develop cancer. It just leaves you at a higher risk of developing cancer.

When speaking with the genetic counselor my parents and I went through our entire family history to the best of our knowledge. We focused on grandparents, aunts, uncles, cousins etc. We were able to identify two types of cancers on Dad’s side of the family. Only one of the two was a women’s cancer and neither was Ovarian. We are not very close with Dad’s family so I honestly had no idea about any of this history. My parents were kind enough to call a distant relative that they have been estranged from for information. Luckily, this relative was very warm and forthcoming with information.

Even with the small presence of cancer on Dad’s side of the family there were no established patterns. There is also no evidence of breast cancer on either side which is promising. Based on our family history, the genetic counselor is inclined to believe that I do not carry the gene and the cause is not genetic. I did a quick saliva test to be sure. We will know for sure once the test results come back in about five weeks.

I feel very indifferent about the test results. On one hand if I carry the gene that will help to explain the mystery of why I developed cancer. On the other hand it could potentially have implications for my family members. If I do not carry the gene there are other genetic tests that we can do but some of what they are testing for is relatively new in medical science and they do not have enough samples or background to draw conclusions about the “why”. I’m not necessarily anxious about the results. I am happy to test to ensure that we can take preventative measures for my family’s wellbeing.

Bottom line, at this point I have little interest in finding out why I got sick. I knew that I was such a medical enigma that I don’t think I ever really truly worried that much because it was made out to be so rare and complicated. If I test positive for BRCA we will take it form there. If I test negative I am going to keep moving along with my new happy healthy second chance at life.