About
MMW
“I am cancer free but I am not free of cancer.”
-MMW
The Story
My Name is Katie, or @mymelanomaworld. I’ve been married since 2005, to an angel. His name is Benji and he really has done everything for me and our family. We have 2 girls, 17 and 11 years old.
My oldest is my strength, she’s strong, sassy and smart. My youngest is my comfort, she’s sweet, witty and smart. We have the best dog, he’s an Australian Cattle dog, named Sid. He’s very energetic and sweet and crazy. He brings such love into our home, we all race to get to him first after coming home from just about anywhere. We are a typically family with friends, lots of sports and family time. We all love to be together, have fun, laugh and make fun of each other. We have grown into something special due to cancer. Yes I said cancer, Stage IV Malignant Metastatic Melanoma.
From this point on, my life was spinning around me, and I was looking in on it from a distance. Mayo Clinic is a special place, with an outstanding reputation. We were determined for me to find the best oncologist and I’m positive, we did. It was one surgery after another, more and more chemo and radiation treatments. It was scan after scan for years, getting radiation running through my veins year after year. We flew to L.A. and back every three weeks, in hopes to receive therapy. It was double blinded, meaning neither the doctors nor the patient new if the patient was getting the treatment. Back to back tumors in some months and long recovery times in others. I was sick and hurt, all the time. I was lonely and depressed, I didn’t have any outlets to turn to, no social media and no cancer friends to relate with. It was scary, my husband did his best to sooth me and help me but things were crazy, I mean always crazy. He was on top of things with the family home and daily needs, girls homework and getting our kindergarten to school. He worked a 40+ hour job with a 40min drive to work, with added traffic. He never complained and never skipped a beat. I was taken care of and so were our girls. He sacrificed so much time and promotions at work to be able to take care of his sick wife. He was the best, always!
The News
I was diagnosed at 26yrs old, in 2006, with a discolored, dark, risen mole under my left forearm. It was very quick, wide excision removal, I heard the word cancer when it was removed but not thinking it was me that it was happening to. My world blew up. I was scared and nervous but for some reason very positive. Two weeks later, the results were in, Stage 2A Melanoma skin cancer. Soon after I was sent to a surgery to see if the cancer spread to my lymph nodes. I didn’t understand that skin cancer could spread, anywhere, it was eye opening. Lots of doctors appointments later, surgery was set. Surgery was done and I was out, with good news, cancer didn’t spread. I was safe. I was one of the “lucky ones.”
Life went on, I got regular skin checks and kept sunscreen everywhere. The family became a sun safety bunch, it was an easy change really, apply sunblock and reapply again. I got pregnant in 2008, and within two weeks of her birth, a tumor showed up in my left armpit. My oldest is just starting kindergarten. They are to young for any of this.
The Fight
I fought everyday for my family, my daughter, my husband, my siblings, my friends and myself. I did not accept anything less than 100% from my doctors. I demanded that they listened to me when I felt my chemo wasn’t working. I was always for surgery, I wanted the tumors out, so that they wouldn’t grow for a second longer. Things didn’t always go my way, things got scary, there was a point in 2010, that my oncologist told me they were trying to turn my weeks into months. My journey was hard, long and brutal, emotionally, physically and I was terrified most of my 10 year battle. Lots of sleepless nights! My tears were uncontrollable leaving me breathless. I don’t know everything about surviving Melanoma but I do know where Ive been and what it felt like.
It’s 2020, 14 years from my diagnosis, I was given my 8 year cancer free diagnosis. I say diagnosis because I feel I have a whole different type of journey now, to heal. To heal emotionally and physically. I’m so proud of how I believed in myself. That I would get healthy and be with my girls. To become stronger! I am not the same, I’m better.
I am an advocate for Melanoma. Sharing my story, being raw and real. Holding nothing back. I want others to know, that miracles can happen. That hope goes a long way, with the power to believe in yourself. By being your own advocate during your journey. All of these things, are so important during your battle against Cancer! Join the Stop Melanoma Movement on IG @StopMelanomaMovement .Where you can connect with others, find hope and supportive Melanoma Community.
I am proud to say I am a Melanoma Skin Cancer Survivor! -xx My Melanoma World
Survivor
On January 24, 2019, I went into my oncologist appointment, I was told, I had made it 5 years cancer free mark. From my original diagnosis of, Stage 4 Metastatic Melanoma back in 2006. I’ve been through so much over the years and continue my struggles daily but I’m a survivor! I made a promise to my two girls that I’d always be here for them. I wanted to keep that promise! I had hope the entire way, it kept me, being me and not letting cancer take over my soul. It had already changed so much of me and I wanted so much more from my life!! I’m proud of the way I handled the difficulties and hurts it brought me. My two daughter had a normal upbringing and don’t even remember mommy being sick. They don’t remember mommy missing any moments of their lives. They know I am a survivor and that I battled for them and my family. Courage is within us all! “if you don’t like something, change it. if you can’t change it, change your attitude”- Maya Angelou
xxstayshadyxx
*STAY SUN SAFE(ER)
Here’s a list of my history with cancer: my treatments, radiation, ER visits and surgeries started in 2006-2013 @Mayo Clinic .
•2/2/2006 Dermatology-9mm, dark/red papule, irregularly borders, risen, mole underneath left forearm. Deep shave biopsy performed & removed onsite of dermatology.
>findings: diagnosed with stage 1A Melanoma
•2/23/06 left arm axillary surgery to check if cancer spread, four levels of fatty tissue and lymph nodes were checked
>findings: positive for melanoma at org site but 2 microscopic melanoma in lymph nodes, negative to spreading of other lymph nodes.
•6/30/09 lung surgery
>diagnosis: two metastatic Melanoma tumors in my right lung. Remove them both laparoscopically. 1 hour surgery. Second night, oxygen machine wasn’t working. Low oxygen, 26%. Almost killed me. Two drains coming out of my rib cage for 5 days. Worst surgery to date! In hospital until. 7/5/09
•7/2/09 CT chest scan
•7/4/09 chest tube removal
•8/27/09 found out I wasn’t getting chemo. I got placebo(h20) in trial
9/11/09 CT thorax scan w/dye injection, post-op
•9/28/09 started chemo: Leukine
•10/16/09 PET/CT whole body
>Findings: midback 6mm(enlarged was 2.7mm), deep rt. thigh tiumor along the femoral shaft, rt. lymph node tumor 9mm, left lymph node 9mm and rt. ovary 4cm. Show metastatic Melanoma.
•10/21/09 spinal tumor 6mm, surgery tumor
•12/1/09 ER VISIT/MRI of head
>Findings: swelling/13mm tumor. Metastatic Melanoma.
•12/3/09 PET/CT scan w/nuclear injection of whole body
>findings: new lesion on brain, new lesion on left abdomen, enlarging pelvic mass and increasing uptake in right thigh for progression of metastatic Melanoma.
•12/7/09 brain MRI
>findings: 14mm tumor, enhanced 1mm since. Metastatic Melanoma. 12/1/09. Image needed for preop mapping.
•12/7/09 left frontal lobe brain surgery
•12/17/09 CT scan pelvis
>findings: uterus has large mss in cul-de-sac/ 8cm, left ovary mass 2.6cm. Large Melanoma tumor. Show metastatic Melanoma.
•12/18/09 MRI of brain w/o & w/contrast
>setup areas for radiation therapy
•12/28/09 radiation to brain/pelvis/thigh until 1/5/10
•12/30/09 CT Abdomen w/contrast, CT Pelvis w/contrast
>setup for radiation to abdominal region
New findings: increase of lower pole to the left kidney, increase size of tumor in uterus
•12/31/09 ER VISIT, CT Abdomen w/contrast
CT pelvis w/contrast
>findings: uterus tumor has rotated and now in front of bladder, maybe attached to bowel, 7.4cm tumor size, increased size of kidney tumor from 1.7cm to 2.2cm. All show metastatic Melanoma.
•1/6/10 ovarian tumor 8cm/surgery: remove Fallopian tube and ovaries (realize no more babies)
•1/13/09 CT Thorax w/contrast, post-op
•1/14/09 Findings: kidney tumor is unchanged,2.2cm in size
•1/28/10 100+ metastatic Melanoma tumors all over my body. Dr told me they were trying to turn my weeks into months to live.
•2/1/10 chemo: Abraxane until 1/15/10
•2/15/10 Brain MRI w &w/o contrast
>findings: no tumors
•2/19/10 PET/CT Whole body
>findings: 3.5 x 1.8 x 1.4cm in quad muscle,
1.5vm in rt tensor muscle, 1.3 x 1 x 5cm in left femur near the left sciatic nerve, 6-7mm tumor near the left posterior spinal canal @T6 level. Left upper back tumor near T7, All show metastatic Melanoma.
•2/23/10 target now surgery on chest, to find a chemo, immunotherapy that would attack Melanoma
•2/24/10 Disneyland trip (last trip with family if passed away)
•3/2/10 MRI of Thoracic Spine w & w/o contrast
>findings: 10 small new metastatic tumors in lower cervical area up to the thoracic area all of which are 1cm or smaller, T6 metastatic tumor 1.9cm
•Radiation/Spine: 3/9, 3/10, 3/11, 3/12, 3/15, 3/16, 3/17, 3/18, 3/19 & 3/22
•Chemotherapy: Temadar Pill 200mg twice a day, 3/12, 3/13 weak, 3/14 throwing up, 3/15 feeling metal taste to everything, sick, throwing up, 3/15 weaker, 3/16 chest cold, weak, throwing up. Hair loss is starting to show. Falling out frequent clumps. Taking 2mg decadron for nausea.
•4/7/10 2nd cycle of Temadar coming, 320mg a day, twice day. 1mg of Decadron for nausea. Angeles Clinic has a space for me for Ipibumalab. Tumors are shrinking.
4/30/10 MRI Thoracic spine w & w/o contrast
>findings: all metastatic Melanoma tumors are progressively growing in size. New tiny tumors showing.
•4/30/10 brain MRI w & w/o contrast
>findings: no evidence of metastatic Melanoma.
•5/7/19 chemo is working, excellent response, small tumors have disappeared.
•6/1/10 MR Lumbar Spine w & w/o contrast m.
>findings: no evidence of new melanoma.
ER visit, pain in legs, UTI, cold sweats and chills. Increase pain patch 75mg to 100mg. Aches and uncomfortable. Serve cramping in pelvic area. Muscular Skeletal Weakness, 10% get from chemo. Dehydration. Post pone cycle 4 of Temodar. 6/2/10 CT Spine, lower extremities, show no evidence of melanoma. Left hospital 6/3/10
•6/7/10 Temozomide chemo (1) 4/1/10 (2) 4/7/10 (3) 5/7/10 (4) 6/24/10
•6/8/10 MRI of brain w & w/o contrast. No sign of metastatic Melanoma.
•6/24/10 low white blood cell count from chemo
•9/3/10 MRI of Pelvis w & w/o contrast. Edema in the right gluteus maximus. Small tumors upper chest.
•9/7/10 white blood count is still low. Pain in muscles. Cold sweats. Loss of appetite. Chills.
•9/23/10 tumor in left armpit
•10/1/10 MRI brain scan
>findings: no tumors
>10/6/10: right lung small tumor all gone, tumor in chest 8mm, armpit 8mm tumor
•10/10/10 have to have my 3rd left axillary armpit surgery in August. Going to try immunotherapy until then.
•10/14/10 MRI brain w & w/o contrast.
>findings: no new reoccurrence of Melanoma! of Angeles Clinic for trial on Yervoy dosage. Not blinded. Will get meds. Small dosage. Every 3 weeks for 4 rounds total. Dec-Feb
•2/10/11 Yervoy immunotherapy clinical trial complete. CT scan, abdomen, pelvis and chest w/contrast. Considered a partial response patient. Decrease in some tumor but increase in another.
•7/14/11 PET/CT whole body scan
>findings: no new melanoma. 2.5cm in left armpit, thyroid gland enlargement 1cm to 1.4cm
•7/18/11 MRI brain scan w & w/o contrast
>findings: no evidence of melanoma
•8/17/11 3rd left armpit surgery. Tumor is 2.5cm. Deeper and entangled in nerves. Removed, lots of nerve damage within that armpit and under arm muscle.
•9/12/11 Post-Op
Rash on armpit due to Dermabond
Chemo/immunotherapied taken: Abraxane, Carboplantin, Taxol, DTIC & ipilumumab and radiating, tumors are shrinking.
•3/21/12 PET/CT whole body scan
>findings: all previous metastatic Melanoma has disappeared, however a 2.5cm tumor is in right lung. Seemed to appear another issue within lung. Blood test showed Valley Fever. Antibiotics for 5 weeks.
•5/17/12 Infections Disease Dept.
no more antibiotics
Need ct chest scan
Await results
Dr discussion
•5/25/12 CT Chest w & w/o contrast
>findings: continued Valley Fever but slowly recovering.
•9/26/12 Dermatology Appt.
>findings: no new moles or skin lesions
Mole mapping appt needed
•9/27/12 MRI Pelvis w & w/o contrast
Lump on lower back
>findings: no evidence of melanoma, palpable mass.
•11/29/12 struggling coming down from 87mg to 75mg Fentayl, in bed for a week. 4 yrs of the medication, very difficult.
•1/8/13 Intergrative Medicine
Sever body pains continued for the past year
ER visit
>findings: no tumors
•1/13/13 CT Head X-ray w/o contrast
Severe headaches for 2 weeks
•1/16/13 MRI brain scan w & w/o contrast
>findings: no evidence of melanoma
•1/24/14 I made it to be, 5 years Cancer Free!
Continued Pain Management appts throughout. Managing my chronic pain, Neuropathies, Fibromyalgia pains and coming off Fentayl Patch (175mg as of Dec. 2010) I still have continued MRI brain scans and PET/CT scans very 4mo. Dermatology appt every 6 months for skin checks.