Mary Benesh-Zoeller

"I share my story in the hope that my story does not become another person’s nightmare."

 

My story began in November of 2008. I had this funny looking “growth” on my shin where I thought a very small mole once inhabited, but this resembled a blood blister the size of a pencil eraser. Of course. I ignored it until my sister (a nurse) asked how I got the “blister” on my shin. When January 2009 rolled around and the “blood blister” had not been absorbed by my body, my sister encouraged me to see my primary care physician.  So I managed to get in early February and she removed the growth without any concern.  She even said, “Doesn’t look like skin cancer.”  So I proceeded with living until a week later I was called by my doctor’s nurse who asked if I could come in to speak with the doctor. “Well, that can’t be a good sign,” I said. “It’s best if the doctor spoke to you personally.” Gulp.

Longest day of my life waiting to see her. I received the news on February 11, 2009.  Stage 2B ulcerated… lots of technical jargon I didn’t understand.  I had the WLE, 6 lymph nodes in right groin removed and 4 weeks of high dose Interferon.  I tried the low dose but due to my history of depression I became suicidal and had to stop after just 3 weeks.  Then June of 2009 (about 3 weeks after I stopped the injections) another spot near my original melanoma appeared.  More melanoma- so I needed another surgery with a skin graft from my stomach to cover the gaping hole left behind on my shin. My original oncologist was not a melanoma specialist (big mistake).  When I asked him what my next step was he said, “Nothing, just watch and wait.”  I did not like that answer so I sought out a melanoma specialist, Dr. Mark Albertini.  He suggested I try Leukine for a year.  So for 14 days each month from Dec 2009-Dec 2010 I injected myself wherever on my body I could find fat and not a bruise from a prior injection.  It was very doable compared to the Interferon.  The beast stayed away from 2010-2012.  April of 2012 a routine PET scan revealed I had two spots in my right leg so surgery was scheduled for May 17th.  I also took part in a clinical trial at UW Health under the guidance of Dr. Albertini for 3 months during that summer. It was rough, but nothing compared to the whole month of Interferon.  Just when I return to a life of living, a PET scan in February of 2013 revealed another two lesions so 4th surgery and a consult with a Chicago doctor about Isolated Limb Perfusion was in order. It was determined that my tumor burden was too low (so glad not an overachiever in that department) so watch and wait was my only option. I had a PET scan denied October 2013 because two prior scans were clear and I was asymptomatic.  December I felt a lump on my ankle and called oncologist who got me in quickly. He feels said lump and orders dermatologist to biopsy it. Upon her examination she feels a second bump and I end up leaving with two more punch biopsies to add to my numerous divots on my body. In the meantime, I wait for a January 10th PET scan and I feel a 3rd bump. I really don’t know what is worse, knowing you have tumors within your body but you can’t see or feel them or actually being able to feel the beast on the surface of your skin. Both equally frightening. So 5th surgery in five years occurred February 11th. I continue to deal with lymphedema and the fear of more recurrences. Melanoma has become a part of me. Definitely a part I did not willingly choose. A follow up PET scan May 22nd showed two more lesions higher up on lower leg so 6th surgery June 5th 2014. 

After a lot of discussion with my family as well as my support group, I came to the conclusion to seek out another consult on my situation. So on July 11th, 2014 I met with Dr. Jeffrey Weber at Moffitt Cancer Center in Tampa Bay, Florida (He is now at NYU.) He is a leading expert and researcher in the area of Melanoma. His suggestion was to refrain from the “cherry picking” approach (unless one lonely lesion rears its ugly head) and allow the melanoma to obtain measurable disease (1 cm or larger) and seek a systemic treatment (at the time Anti-PD-1 was making headway in the fight and he felt its FDA approval was coming soon). So Keytruda was approved in October, however, I would first have to fail Yervoy to qualify for it.  Luckily an October 17th PET showed NED. Not for long as March 9th of 2015 I found another lesion  on my right ankle which a biopsy confirmed melanoma. Melanoma-the gift that just keeps on giving. So I proceeded to have a another surgery as well as another lymphadenectomy since my last one was in 2009 and surgeon wanted to make sure lymph nodes were clear-which the only one she had to remove behind my knee was. After a week of recovering I returned to work and living life. Follow up PET scans were “unremarkable” for almost 2 years.
Then January 16th of this year (2017) I feel a bump on my same leg. FUCK! Derm got me in same day, and you guessed it! Flipping another recurrence of melanoma. Another PET scan showed 2 other areas in the same leg lit up. I have been lucky so far that all my lesions have been contained to my leg and no organ involvement. My oncologist and surgeon gave me my options: more surgery, Isolated Limb Perfusion, or 6 months of Imlygic injections (every 2 weeks). I opted for Imlygic injections. I had my first treatment on March 24th and the only side effect was some nausea. Because I am only 1 of 3 patients currently receiving this treatment at UW Health, my doctors are uncertain if side effects will be cumulative, mild, or severe. This treatment was recently approved by the FDA in 2015 at the cost of $65,000 for the 6 months of treatment.

There has not been a day that goes by that I don’t think of this beast.  I used to cry at least once every day when I’d think about how I was going to die such a terrible death.  I don’t cry every day anymore (but on occasion I do!). However, I go to sleep at night with it on my mind and I awake with it on my mind. I feel as if I am walking around with a ticking time bomb.  I have suffered emotionally, physically, and financially due to this insidious disease. My son, who was 16 at the time of my diagnosis, had one request of me when I was going through treatment, “Keep fighting.”  That still resonates inside me as I read about the journeys of so many other melanoma warriors who are not in a good place right now. I don’t know what my future holds but I know who holds my future, and I will keep fighting.

I share my story in the hope that my story does not become another person’s nightmare. Please protect your largest organ, practice sun safety by limiting the sun, not the fun, wear sunscreen, sunglasses, and protective clothing. As with all cancer, early detection is vital. Seek a dermatologist for an annual examination and if something just doesn’t look or feel right INSIST it be removed. WHEN IN DOUBT, CUT IT OUT! Do not watch and wait. It may be too late. I thank God for the support I have found in an AMAZING online community as well as for the love and support of my family and friends.  No one can beat the beast alone.

Mon, 2017-05-22

Comments

Jen F. - (6/25/2018 - 12:11pm)

Hello.  Thank you so much for sharing your story - I know that it isn't easy.  I'm a survivor of stage 1B melanoma but have had 34 moles removed since then and continue to have scares.  I'm lucky so far to not have to endure what you've been through.  I have two questions from your story as they are similar to what I am currently experiencing.

I was curious if you could tell me what the "lumps" on your leg felt like and if there were under a mole or not.  I have a hard lump that has appeared recently and it's inbetween a couple light, flesh-colored moles.  I was hit in that area with a frisbee pretty hard several weeks ago, so I am not sure if it's from that or something more. 

The other is the "blood blister".  I had two moles removed in January from my back.  Over the last 6 weeks, both have turned into things that look like blood blisters.  The first was small but I went in to derm and she stated I must have "irritated the scar".  The next happened about two weeks ago and became pretty large and very red around it.  I went back in and she agreed it was odd but didn't think it would be cancerous.  She removed it but it did have blood come out of it when they numbed it.  I'm nervously awaiting the results, but curious if yours was similar to this or not.  I want to trust her but also want to be realistic if it could come back as melanoma.

Thank you and hope you're doing well :)

Jen

maryb-z - (6/26/2018 - 6:07pm)

Hi Jen,
The lumps I could feel were not under moles at all. They were pea sized and palpable. My derm doesn't mess around. IF I notice anything funky I call and am seen within 48 hours. Always punch biopsies my unusual bumps. Since my injections I can officially report 1 year NED! Good luck to you!

No One Fights Alone