Jonathon

39 year old single Dad of four awesome kiddos.

 

Stage IIIC, subungual melanoma misdiagnosed for 18 months by multiple doctors.

I first noticed the small (the thickness of a needle) black line under the fingernail of my middle finger on my left hand while setting in my office talking with a student who was in trouble for cursing at a teacher.  I didn't think too much of it, except to think to myself, "That's strange, I don't remember smashing my nail?  It must be a vitamin deficiency."  After a few months, the little line, that seemed to appear out of nowhere had spread to the corner of my fingernail and was a greyish black color.  It wasn't painful at all, and honestly, unless I had a reason to look at my nails, I didn't even think about it or notice it too often.  A few more months down the line and while biting on my nails (a terrible lifelong habit that I do while driving), my nail split along the little black line and started to deteriorate over the next few weeks.  "Hmm, that's not normal.", I thought to myself.  Upon arrival at law school that night, instead of listening to a lecture over Texas pretermitted child statute, I googled nail diseases.  Wow, I never knew there were so many diseases of the nail.  It was quite possibly a fungal infection which it seems were tough to get rid of, although there was one photo of something called subungual melanoma which stopped me in my tracks.  It was the exact replica of what my nail looked like six or seven months ago.  In addition, I was having near constant lower abdominal pain.  It was time to make an appointment with my Dr. to get it checked out.

At the appointment I told my Dr. about the abdominal pain and also showed him the fingernail.  He said it looked like I had proabably damaged the nail bed and was proabably going to lose the nail.  I told him I had not had any trauma to the nail and even asked if it could be cancer.  He took a second look and said, no, cancer under the nail is very rare, it's either trauma or a fungal infection and told me to put a otc topical treatment on my nail.  In a few months we would know the answer.  Sent me on for  CT scan for the abdominal pain.  Scan results were normal.

I treated the nail religiously with the otc treatment, but the nail continued to deteriorate.  Now, only about 1/3rd of the nail was left and a brownish, puss like substance was underneath.  I had another Dr. examine the nail, as something in my gut told me this wasn't normal.  The second Dr. took a look at it and said that it was probably just trauma and that the nail bed looked infected.  He prescribed antibiotics.  I specifically asked, could this be cancer, and he said no.  He stated in his 27 years as a family doctor he had only observed melanoma of the nail once and it looked much different.

Relieved that this was not cancer, I took the antibiotics and covered the nail with a band-aid.  The nail continued to deteriorate and over the course of a few more months developed a raised lesion.  At a holiday gathering, I had my sister, a nurse practitioner examine and she thought it was infected and drained a good deal of blood from it with a hypodermic needle.  She stated she thought it was odd that there was no puss.  She had her father-in-law, a 40 year family doctor take a look at it and he too thought I had lost the nail due to an infection, removed the last sliver of nail I had left and prescribed a different antibiotic.  This ordeal had been going on for over a year since I first noticed the black line and I had now had 4 different medical professionals tell me it wasn't cancer.  Fast forward 4 more months and the lesion had grown, turned brown, was ulcerated and bleeding.  I called my sister and sent her a picture and she told me to go to my local ER and schedule a biopsy.  The E.R. Dr. took one look at my nail and said, "Has anyone told you this could be melanoma?"

Biopsy completed that day with a dermatologist who basically said, I'm 95% sure this is going to be melanoma.  Pathology came back a couple days later and positive for melanoma.  Mitotic rate of 4mm, and at least 4 mm deep from shave biopsy.  Dermatologist suggested since I was young with four young children and lived close enough, I should go see the folks at MD Anderson in Houston.  I had already decided this course when I was told that it might be cancer.

It's kinda funny, because I have always told folks when I die someday it will be from cancer.  See, cancer has been a scourge on my family.  My paternal grandmother died of pancreatic cancer prior to my birth, my maternal grandfather died of melanoma when I was 11.  My maternal great-grandmother had a double masectomy due to breast cancer.  My maternal great-grandfather died at 23 years of age from what we now figure was testicular cancer.  My Father had colon cancer in his 40's and again in his 60's.  Melanoma in 2005, Stage 2.  My mother had uteran cancer in her 40's and pancreatic cancer in 2013.  Cancer is a scourge indeed.

There is never a good time to get cancer, but in the middle of a divorce, raising 4 small children (7 year old boy/girl twins, a 3 year old, and an 20 month old), studying for the bar exam, having "risked" leaving your job to focus on the exam and having no health insurance, and remodeling a 12000 sq. ft. warehouse building into your home that you had to move into prematurely because of the divorce, was definitely not the best of timing.

I was diagnosed on July 17, 2017, surgery to amputate half of the left middle finger on August 7th, and a sentinel node biopsy in which 4 of the 5 nodes removed came back as positive for cancer.  Stage IIIC.  Tumor turned out to have a breslow thickness of 7mm.  Team at MD Anderson has been awesome so far, unfortunately I am in the wait and see mode because my past medical history makes Ipi in the adjuvant setting not a treatment option.  Scans every two months, ultrasound of my nodes every 3 (Dr. said no benefit to CLND) and bloodwork monthly.  I've improved my diet, exercise, walk with Jesus, and although I have always felt I was an excellent Father, I've even improved that aspect of my life as well.

I won't let cancer define me even though I'm scared of the what if's.  I'm not worried about myself, but rather my children growing up without a father.  Most days I put that fear to the back of my brain, swallow it down inside, deep in those dark places of our soul, and focus on living.  I make long-term plans, I am more apt to get dessert, I am more likely to get in the floor with my kiddos and play and imagine.  I spend more time talking with God, and I spend less energy on the things in this life that don't matter.  In many ways, cancer has been a blessing or a gift.  I'm prepared mentally for the worst, but believing in the best.  I stand firm on the promises of God, Jeremiah 29:11  "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Thu, 2017-09-28

Comments

Latigo Sol - (1/14/2019 - 12:43pm)

thank you for sharing this. ive been seeking a site like this with people like you who are willing and able to share some of their story. ive been referred to a specialist. similar situation w the doctor i initially saw; hed never seen anything like it before but im a grad student researcher so before i went to him i did a ton of research beforehand. i noticed it in nov not sure how long it was there before but its definitely not a splinter hemorrhage. im also noticing pain i havent had before and i know we shouldnt worry until theres been a definite diagnosis but im human and it does have me worried. ill be seeing the specialist soon i hope (i currently live in a country with very poor health care in terms of availability of and access to medical care; ill be returning stateside in march for a follow up appointment). in the meantime im learning as much as i can about subungual melanoma.

sending best wishes to you