My BC Tackle Box. Nine Years In…Resources and Allies

I remember that a few times when I was a kid during our summers at the Cottage, my introverted side would kick in and I would need some space. I remember a few evenings grabbing my tackle box with its hooks, sinkers, and lures–the tools needed to fish–as well as a fishing rod and a book to take out in the row boat to go fishing. I remember catching one of my biggest fish on one of those little solo ventures, a 3-pound catfish, but also remember being perfectly content being out there reading my book and just hanging out, not realizing as a 9 or 10 year old kid just how much I was soaking in the peacefulness and independence of being out on the Lake by myself.

9 years in to this experience with breast cancer, I feel the need to open up my BC tackle box and reflect on my gear, the resources and allies I have found personally most important and beneficial in getting this far. Yes, I have written about a number of these topics before, but I haven’t really reflected on this list in a while. And so, without further ado:

1. Family & Friends

Being given a cancer diagnosis when you are living more than 900 miles from home can be a bit tricky, and it was so imperative to be able to lean in to my family and friends when I was initially diagnosed. I found that I didn’t want to talk to everyone about my situation, though. Too exhausting. Having key people to talk to who could then pass on information and my status was key. The get well cards, messages, flowers and gifts were so deeply appreciated. I also found that communicating with everyone through CaringBridge was a game changer. Special thanks to my cousin Marilyn for suggesting it! I loved being able to control what was being shared–and being able to reach people scattered about the world. And it was very intuitive to set up, which is a special bonus.

It has also been so important for me to continue to share my cancer journey with others. Even though I am NED–No Evidence of Disease–and no longer in active treatment other than continuing with Tamoxifen and very regular checkups, I still identify as someone very impacted by that original cancer diagnosis. My understanding of cancer has evolved over the years and so has what I need from family and friends.

Most importantly, these people have been, and continue to be, absolutely essential.

2. Medical Team

An excellent medical team is so very important–throughout your whole cancer journey. Get recommendations from people you trust. Get second and third opinions. Don’t let your maintenance slide once you get the ‘All Clear’ sign. Regular checkups are so key. Nurse navigators are awesome! Rock star doctors are pretty great, as well.

*****Also, contact any friend or family member who is either a doctor or married to one. I had 3 such people to call on and found that their early words were especially enlightening. Through their insights, I realized that I was receiving excellent care and they helped me ask the right questions of my medical team.*****

3. Rock Star Psychologist

I tried counseling and therapy a few times during my early days teaching in Chicago, during the early 2000s and saw two different therapists. I went to one woman who thought I had an addiction problem because I liked Jimmy Buffet’s book Where Is Joe Merchant when she asked me about favorite books (ignoring the fact that I’d been a Peace Corps Volunteer in the Caribbean and while the book was nothing like my experience there, I found it simply a fun read) and she was under the opinion that Jimmy was a heroin addict. She also thought it was professional to accept the phone call of another patient during a session with me, talking to the patient with–me in the room, and then telling me that this other patient was suicidal when they had disconnected the call. Talk about issues!

However, 10 months after my initial breast cancer diagnosis, I went into a really deep funk and reached out to my awesome primary care physician Dr. Garrett again for a referral. Apparently, the third time seeking a therapist was the charm, because Rebecca S. ended up being exactly what I needed to sort through my cancer and life. She gave me support, friendship, understanding, guidance, and tools to use which were all invaluable. Rebecca’s most lasting gift, however, was nudging me to start this blog which I will be forever grateful to her for giving me that encouragement.

4. Blogging Community

Early on, I started following bloggers who were very connected to the breast cancer community and they became invaluable guides on my journey. Marie at Journeying Beyond Breast Cancer has created a community with her blog and her weekly compilation of posts written by others–those dealing with breast cancer, as well as other conditions and illnesses–that is simply amazing! I will be forever grateful to be included in so many Weekly Roundups…including today’s edition! 🙂 Marie’s own writing is also terrific as demonstrated in her post 10 Things I Wish I Had Known When I Was Diagnosed With Breast Cancer. This community of health and wellness has also prompted quite a few of my own posts, like Reclaiming the Driver’s Seat,  Everyone Else Seems to Be Weighing In and On Annie Oakley and Wonder Woman.

And special recognition goes to the importance of my readers!!!! Wow! Kel, Marilyn, and Mom, thank you for having been there since the beginning of this blog and always making such awesome comments!!!! You rock!!!!!

5. BCSM

Another cool source that I leaned into while we lived in NOLA and is still going strong today is #BCSM or Breast Cancer Social Media found on Twitter.

6. American Cancer Society 

I may not have appreciated being assigned a male volunteer/survivor to call me the day after surgery (apparently JoAnn looks like John in some people’s eyes and this has happened a couple of times to me over the years) but I have lost track of all of the excellent and informative pamphlets and resources the the American Cancer Society has linked me to throughout the past 9 years; their “tlc” catalog/virtual store selling hair loss, mastectomy and medical alert products was one of the most affordable sites I found; I attended a monthly support group affiliated with ACS while in NOLA; and I was involved in a virtual support group trial that they were piloting at one point, which I found very useful. Well worth checking out.

7. I Had Cancer

In January 2014, I read a message that the online support community I Had Cancer was looking for cancer survivors, fighters and supporters in New Orleans to be a part of a panel discussion at the American Medical Student Association’s Annual Conference in March in New Orleans. I was intrigued and contacted Emily, I Had Cancer’s Community and Social Media Manager, about participating.

          I Had Cancer was formed in 2009 to:

…empower anyone who has been affected by cancer. Whether you are a fighter, survivor or supporter/caregiver, you can find the support and answers you need from people who have experienced similar situations.

Who is I Had Cancer for?

Fighters: People currently diagnosed with cancer who are looking for information and support from other people who have been through a similar experience and understand.

Survivors: People who have overcome their diagnoses and are looking for continued support or hoping to inspire and help others who have been recently diagnosed.

Supporters: Caregivers or supporters who have been with their loved ones through their cancer diagnoses and are looking for support or to exchange information.

It turns out they were looking for volunteers to share their cancer stories and unique perspectives with medical students–and I was chosen as one of the participants. What an awesome opportunity it turned out to be! I was a little intimidated showing up to the Riverside Hilton for the conference and panel, not knowing what to expect, but I need not have worried. The I Had Cancer team is such a positive, receptive and engaging group and they immediately put me at ease.  They facilitated an engaging set of panel discussions that drew on the experiences of the panelists while drawing in the audience of pre-med and medical students. The best part, however, was meeting other cancer survivors and being able to gain fresh insights from one another.

A little bit of swag from the I Had Cancer team!

A little bit of swag from the I Had Cancer team!

One never knows where one might find support and camaraderie!

8. Recovery on Water

I found attending an American Cancer Society support group for BC survivors in New Orleans very beneficial and tried to replicate that experience after we moved back to Chicago, but didn’t have much luck finding a good fit. ACS didn’t really have any programs that worked and when I tried Gilda’s Club, which I think has an amazing variety of programming, I found that I missed the more focused mission of supporting BC patients and survivors. Still, I was looking for something supportive, but I could never have imagined that walking our dogs would lead to becoming a member of this amazing rowing team for breast cancer survivors!

Here are a couple of my most popular posts about Recovery on Water:

A Love Letter to My Fabulous ROW Coaches

Remembering Christa Cannon

Row, Row, ROW Your Boat

9. TAG, my Husband

It hasn’t been easy for this one, having a wife diagnosed with breast cancer in his mid-40s, but he has stood by me and helped me figure it out, which I will be forever grateful.

There was one cool resource we–well, ok, I–found early on specific to husbands: Marc Silver’s The Breast Cancer HusbandA good resource.

Here are some past posts about resources that you might find useful:

Some BC Resources

Top 10 Resources for the Newly Diagnosed w/BC

How Did You Meet?

Technology

What are some of your resources in your own tackle box? Feel free to leave any suggestions in the comment section.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

8 thoughts on “My BC Tackle Box. Nine Years In…Resources and Allies

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