Sunday, November 01, 2015

Profiles in Lung Cancer - Day 1: Melissa Crouse, "So the chess match goes on."

Hey folks, it is November, which is Lung Cancer Awareness Month. In honor of this, a group of lung cancer bloggers will be interviewing people in the lung cancer community and profiling a patient, caregiver, advocate or health care provider each day. I will post them here for your enjoyment. I am excited to get to know more people who are impacted by this disease, and I hope you will join me on this ride.


PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015


Day 1: Melissa Crouse, Lung Cancer Patient and 10 year survivor.
"So the chess match goes on." 
Twitter handle: @mcrouse53


Who is Melissa Crouse? Tell us a little about yourself, outside of cancer. 

I am the mother of three grown children and a grandmother to two boys (ages 10 and 7) and a girl (age 2-1/2). I also just recently retired from teaching middle school orchestra and chorus………a job I loved and miss. I’ve always been very physically active. Skiing (snow), horseback riding, bike riding, working out and gardening were some of the activities I regularly enjoyed. I was a certified ski instructor when I lived in western Pennsylvania and taught skiing for about 15 years. Those were very happy and fulfilling times. I especially loved the night time chairlift rides when the sky was lit up with so many stars. Everything was hushed and calm. I also had two Tennessee Walking horses before I had children. I can still remember riding during crisp, cool fall days when the leaves of the trees were brilliant. I now live in Florida and enjoy all that this beautiful weather has to offer. The beach is close by which is an added bonus. I enjoy the beach and boating with my son-in-law and daughter on their boat. My children have all moved also, so I am blessed to have them all close by.


How did they find out your had lung cancer? What was that like? How did you feel?

 
My lung cancer was an accidental finding. I accepted a teaching job in Fort Myers, Florida 10 years ago which involved having to move from Pennsylvania. (Long story there.) I needed to have a routine physical as part of the hiring process, so I went to a walk in clinic to get it done. I developed an upper respiratory infection right around the time of orientation week for my new teaching position, so the doctor did a chest x-ray to rule out pneumonia and also for the TB test. The x-ray revealed a tumor in my left upper lobe. Because the radiologist knew my brother (who is a surgeon here in Fort Myers), he called my brother with his concerns. I was in the dark for a few days and it was my sister-in-law who finally answered my question of “I wonder what’s wrong with me?”. We were in her car at Bed Bath and Beyond when she turned to me and said “You have cancer”. I was shocked and speechless. I felt as if I was was falling in slow motion down an endless hole. When we met with the oncologist I asked him, “How can I have lung cancer? I never smoked”. Needless to say, I’ve learned a lot since then. Here I was, a relatively young, otherwise healthy woman who worked out regularly and took good care of herself. I was incredulous. Moving to Florida likely saved my life.


What sort of treatments have you had, and what were they like?


I had an an upper left lobe lung resection followed by the typical 6 cycle carboplatin-taxol regime and was NED for about 3 years. Then a follow-up scan showed “multiple and numerous” lesions (about 17) in my liver, so I became a stage 4 patient. I should say that I was originally diagnosed August of 2005 and my recurrence was discovered in Feb. 2009. I was put on a phase 2 clincal trial of Carboplatin, Ixempra and Avastin which knocked all of the cancer except one particularly large tumor away. I then had sterteotactic radiation therapy to that lesion along with a 6-cycle course of Alimta and Avastin. So, I’ve had numerous IV infusions of all types of agents including Alimta, Avastin, Taxol, Carboplatin in various combinations. Then, in Nov. 2009, I hooked up with a specialist at Mass Gen and am currently on my 4th clinical trial of a targeted therapy. Among the “tinibs” I’ve been on are Cabozantinib (a horrid, toxic, evil drug), Lenvantinib (almost as bad) and currently on Alectinib. Each “tinib” was a little less toxic as the one before. I just recently was taken off the Alectinib trial (a trial that was created just for me…a RET patient. It is already approved for ALK) The drug was working for me, but is affecting my bilirubin levels, so I was recently pulled from it and the plan is for me to go on Opdivo. Also, two years ago I underwent proton beam therapy at Mass Gen. which successfully zapped the 4-5 tumors that were still in my liver, but the nature of NSCLC is sneaky and persistent and it just keeps slowly creeping back. So the chess match goes on.


What is a typical day like for you, living with stage IV lung cancer?


Up until this year, a typical day involved going to work. I am still trying to adjust to not working which is hard for me. I stay busy helping out with my grandchildren. Picking them up from school, babysitting etc. I also spend a lot of time doing advocacy and mentoring other lung cancer patients. I also am a peer reviewer for the SRA and have been trying to establish a local lung cancer support group. A typical day involves getting up, having coffee, checking and responding to emails, reading, going to the beach if I feel up to it. The beach is great therapy!! Meeting friends for lunch and/or dinner and taking care of my two dogs. As a matter of fact, my response to this email was interrupted by a local newspaper photographer who came to take some pictures that will run along with an article(s) that are being planned for next month. I’ve already been interviewed. Our local paper is focusing on lung cancer in November!! Yay!!


What is something you want people to know about lung cancer?

I want people to know that ANYONE can get lung cancer. That it’s the number one cancer killer of women and that the funding is extremely disproportionate compared to other cancers.


What gives you hope?

My wonderful oncologist gives me hope. He’s always thinking ahead and always has a plan B, C and D in place. He also educates me about all the new research that is happening (much of it in his lab). He keeps me in the loop and thoroughly explains everything to me. My appointments with him are unhurried and he is caring and kind. He calls me and encourages me to call him anytime. I also refuse to quit. I’m very competitive and cancer will NOT get the upper hand!!! Period!!!




Is there anything else you would like to share?

I want to add that all three of my children have moved from Penna. to Fort Myers and now live and work near me. It’s such a blessing to have my family close by.


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Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Tomorrow’s post will be on Janet Freeman-Daily's blog Gray Connections, where she will profile lung cancer advocate Deanna Hendrickson.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.


7 comments:

Mary Koral said...

What rings so true to me about this is the basic nature of Stage 4. doesn't matter whether it's lung, colon, breast. It's breathtaking and we need to move FAST in the direction of recognizing the intersection, possible connections of the disease. I loved the honest story. Life changes in one split moment and then you go on. I keep thinking that if we connected instead of saying, October, breast cancer, November lung cancer we would be ahead. It's a weird form of segregation that works to little benefit. Patients need to say that, yes? N0?

Tori Tomalia said...

That's where the research is headed, looking at the similarities between the cancers, what drives them and so on. There are basket trials underway looking at that. It may take a while and lots of education before the general public recognizes that, though, and then there is always the issue of funding and making sure the money is actually going where it can be best used. One of my goals for this month, however, is making sure that people recognize that anyone can get lung cancer. I didn't know this, and it was a lesson I had to learn the hard way.

joann said...

This is such a great article and a wonderful idea to post stories of others journeys throughout the month! I'll try to keep up with you and enjoy getting to know so many other people who are also affected in some way with lung cancer.
Thanks Tori! November just happens to be my one year CANCERVERSARY!

Tori Tomalia said...

Thank you, and congratulations on your first cancerversary! May you have many more.

Phil Trahan said...

Great job, Tori, and thanks!

maizie said...

Great interview, Tori. Thanks. Best to Melissa.

Anonymous said...

Melissa, I also live in fort Myers and have been recently diagnosed. I would very much like to get in touch with you and possibly a local support group. Thank you for sharing your story, it inspires me to fight!