Ann

Meet Ann.

Ann and I first met at Birch Trail Camp for Girls located in Minong, Wisconsin. We were ten.  I remember Ann as a bright eyed, energetic, and talkative camper who appeared older and wiser than her age. Her energy was explosive.  Unlike Ann, I was painfully shy, timid, and terribly homesick. 

My interactions with Ann were limited. We were in different cabins, with a similar circle of friends.  Her and I exchanged a few hits during a competitive game of Biffer, which resulted in us being covered head to toe in flower and paste.

We were distant acquaintances nothing more.

This past December when I was diagnosed with Lymphoma, my fifth grade- far removed friend- reached out and slowly told me about her journey with Cancer.

Thanks to Facebook, Ann and I twenty years later were able to start a deep friendship that helped me get through my diagnosis, treatment and perhaps more importantly the months, days and moments thereafter.

Ann was my “unofficial angel”, my soul sister, my 9/11 call in the middle of the night when I was managing a new side effect, or when the fears of my mortality had become unbearable.

Ann was my voice of reason, the “your going to be ok, better than ok, and when you realize this I am going to tell you- I told you so.”

I asked Ann to share her “Twist on Cancer.” 

I share this with you because I think it is important that you know just how special Ann is.

Thank you Birch Trail, thank you Facebook, and perhaps thank you cancer for bringing us together.  I don’t know what I would do without you.

Meet Ann.

One will often hear cancer patients or survivors say that their diagnosis was the best thing that ever happened to them. While I wouldn’t say it quite so starkly, I will say that having cancer changed my perspective and my life for the better. It made me Grateful.
I pulled myself through my diagnosis, treatment and healing process by reminding myself, and others, every day, that if Hodgkin’s Lymphoma, 6 months of chemotherapy and its’ after-effects were the worst thing that ever happened to me, I continued to be one of the luckiest people I knew.
And I knew, I knew exactly how lucky I was – to be otherwise young and strong, to have great health insurance, to have my sister nearby and parents in the position to travel 1,300 miles every other week for my treatment, to have patient and adoring friends, and to have a disease classified as eminently treatable and most-likely curable – I was Grateful every day.
Yes, I cried when I was diagnosed. Yes, I cried when I lost my hair. Yes, I cried every day because I felt crappy, or had to go to another doctor, or was just plain scared. I wasn’t brave. I wanted my early-20s back. I didn’t want to worry. But every day, I counted up all of the things for which I was Grateful. The list was so long. Even now, 8 years later, I still do this.
Being Grateful when I was sick taught me to be Grateful now that I am well. My Twist on Cancer is an attitude of deep Gratitude.

Survivor’s Guilt

Yesterday I was back at Northwestern- back on floor 21- back in throws of the system.

Every three months- my blood is carefully examined, categorized,and  stripped down to its basic elements.

Every three months- I am forced to contend with the fear of recurrence, the fear of unruly cells, the fear that my blood and my body is perhaps no longer my own.

As I sat there and waited, I realized that I was contending with feelings that I was previously unable to label.

I was and am suffering from survivor’s guilt.

As I sat there, feeling healthy, hopeful, and strong-I was surrounded by countless people who were noticeably ravaged by the disease, exhausted, and seemingly hopeless.

The sadness and fear in the room was palatable- overwhelming-suffocating.

And then there were the few that I could readily identify as warriors- that were living in spite of Cancer- that were holding on to hope- and fighting for every moment.

The longer I waited- the more uncomfortable I became.

So where exactly do I now fit on floor 21?

I don’t look like anyone else there- yet somehow I am still a part of this diverse community.

As I continue to get better, continue to strengthen, and continue to have clean scans- my survivor’s guilt worsens.

I suppose this is what happens when you are thrown into a fight with no rules-with an opponent who doesn’t play fair.

While I am grateful for my survival, grateful for my life in hypercolor, I am also deeply saddened that many are not given that same chance- that chance to live a life that has been elevated by their dance with Cancer.

Bending, Twisting, Moving.

This past saturday, nearly 50 women attended a 90-minute Zumba-thon to raise money and awareness for the Leukemia and Lymphoma Society (LLS).  As LLS’s honored winter hero I have had the privilege of meeting remarkable individuals who are deeply invested in finding a cure for Blood Cancer. Thank you to all the women that woke up early, checked their shame at the door, and let it all hang out!  This group raised $880 and had a great time doing it.

Because of you, because of your commitment, because of your dedication, one day we will find a cure.

But until then, we will bend, move, and twist

because we can

because we should

because we must.

Thank you for moving with me- I was in turn- deeply moved.

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Twist Out Cancer Announces a New Partnership With Noam Carver

TOC is pleased to announce a new partnership with uber-talented jewelry designer Noam Carver.

Noam Carver is a sculptor, designer and goldsmith whose jewelry unites classical and contemporary motifs from around the world with the majesty of regal adornment.

From concept through fabrication, each piece is meticulously hand-crafted with precious metals and rare, one-of-a-kind gemstones.

Noam’s designs have garnered numerous awards including MJSA, Canadian Jeweler, National Jeweler ”Best Of”, and the centurian emerging designer award.

Noam will be creating Twist Out Cancer pieces that will be available online in the next few months. In the meantime check out his website at www.noamcarver.com

On Track for a Cure

On Sunday October 9, 2011- over 400 survivors and their loved ones attended UCLA’s On Track for a Cure (www.ontrackforacure.org) at UCLA’s Drake Stadium to celebrate survivorship and the importance of living life in spite of Cancer.

On Track for a Cure was conceptualized and created by Dr. Pinter Brown and Dr. Timerman, two leading Lymphoma specialists that not only treat patients but are responsible for developing novel immuntherapeutic approaches for Lymphoma and other related Cancer’s at UCLa’s Medical Center. This event aimed and succeeded  in creating a sense of community amongst survivors and supporters, and helped to raise money and awareness for Lymphoma Research.

Following Dr. Pinter Brown and Dr. Timmerman’s keynote address, Michael C. Hall, star of the hit television show Dexter, led the survivors and their loved one’s in a victory lap around Drake Stadium.  Following the walk, Jesse Palter and the Alter Ego (www.palterego.com) graced the stage with incredible energy and talent.  I concluded the event by sharing my story and leading the group in the twist.

It was a day of celebration, and most importantly a day filled with hope.

It was a true privilege to be apart of this event and I look forward to continuing to support  the efforts of the talented UCLA staff and their inspirational community of survivors.

A special thanks to Steve Bartolucci and Jonny Imerman for connecting the dots and making this happen.

And to the Tiny Twisters- thank you for moving with me.

 

Michael C. Hall Leading the Pack!

 

 

Rockstar Survivor Kristin Brown

The Motley Crew- TJ, Adam Siegal, Jesse Palter and Sam Barsh

>Questions for Dr. Leo Gordon- Also Known As The Man Who Will Save My Life

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In anticipation of tomorrow’s meeting I have compiled a list of questions that I hope will help provide insight into my illness.



1.    Type, Stage, Prognosis?
2.
     How fast moving is this cancer? If we wait 2 weeks am I putting myself at risk?
3.
     How long have I been walking around with this?
4.
     What is the average length of time for treatment?
5.
     When do you determine when to radiate? What are the long term affects of radiation?
6.
     What is the treatment regimen? What is the format? 1 week on, 2 weeks off?
7.
     How will the Chemo regimen that you put me on in your opinion affect my fertility?
8.
     Do you want me to have a port?
9.
     Will I have a bone marrow biopsy? Can I be put to sleep for this procedure?
10.  What other surgical procedures if any do you anticipate me having?
11.  
 What are the side effects I can expect to experience from treatment?
12.  
 How does chemo affect my immune system? Will I need to avoid public spaces? Are there certain activities I need to abstain from?
13.
Does Chemo affect your libido? Are there sexual side effects I should be aware of. Are these temporary or permanent?
14.
What can I do now to help ease my symptoms? Headaches/fatigue/weakness?
15.
Will chemo affect my symptoms? Will I get relief from them through treatment?
16.
How much sleep should I be getting?
17.
Can I still work?
18.
Should I be exercising?
19.
Are there foods I should be eating or avoiding?
20.
Should I be abstaining from alcohol?
21.
When do most patients lose their hair?
22.
Do most shave before they start chemo?
23.
What are follow up visits like?
24.
What types of procedures are required during follow-ups
25.
How often do I get a pet scan
26.
Are there other tests or procedures to tell if treatment is working?
27.
What research has been done on how this is contracted?
28.
Is Neely at risk for getting this?
29.
What is the rate of reoccurrence? How likely am I to develop another form of Cancer?
30.
What types of support groups are offered for patients, family, friends?
31.
Will I ever be able to donate blood?
32.
Will I ever be able to donate eggs?



      What am I missing??? 
      Also- can someone explain to me how exactly I got on this crazy Cancer train????