Surviving melanoma twice, eighteen years apart.

Where to begin?  Well, I was raised at the beach!  That is to say, my family spent summers on Long Island and Mom would pack us up and take us to the beach in the morning and we came home after dinner.   When we were little we even napped at the beach, in a "beach house".   I am fair skinned, blonde (in my younger years!), and blue eyed.  Need I say more.  We moved from NYC to CT when I was 7.  My parents joined a "beach club" and I would spend the days during every summer I can remember, at that beach.  I became a competitive swimmer, with a love of the water.... and sun.  The stage is set.

In the Spring of 1989 while busy buying a home, packing to move, finalizing my divorce and changing my shift at work, I scratched behind my left thigh.  Ouch, it was VERY sensitive.  I found a mirror and looked:  there I saw a dark reddy brown with a pinkish border and a slight indentation into the dark reddy brown area.  It looked like a little Pacman.  About the size of a pencil eraser.

I was just too caught up in what was happening.  My previous 18 months had been a living hell.  Finally, my three young children ( ages 7, 9, and 11) and I were going to move away from the maddness...to our new home.  We moved in June 2nd, the same day I had to appear in court for my divorce.  My sister had come from Ohio and my Dad up from Connecticut to help.  The move went fairly well, my Dad made sure they did a few extra things. 

In late July my sister and a friend returned from Ohio  for a visit.   They had a great time and it was fun having them here in my new home. 

Finally, once my sister and her friend left, I made an appointment with my surgeon.  Having worked at this hospital as an RN for the past 14 years, I knew who I wanted putting a knife to me.  The mole was excised and I remember him saying:  " I am going to do an eliptical excision here", thinking I would know where this was heading.  I returned for suture removal in 10 days and to hear the pathology report.  I knew when my doctor came into the room it was not good news.  He said, "I am afraid I have bad news, the mole came backClarks Level 3 melanoma".  Of course, being a nurse, I knew what this meant.  I tried so hard to be stoik.   I returned home and made arrangements for the children to be cared for.  I was told I would be in the hospital for 5 days and back to work in 3 wks.  Ha! Ha!  Do you think after all I had been through this would be easy?  Right!  My ex-husband was too busy in his "other" life to help.  So, back came my sister with her youngest. 

On August 14th, 1989 I had a wide excision and split thickness skin graft (STSG) on my posterior left thigh.  The surgery went well.  However, I was in the hospital for 9 days and didn't return to work for 5 weeks.  During this time, my now 10 year old daughter ran over her 12 year old brothers' arm, breaking the ulna and radius both!  On the second day at a totally new school, to boot.  Then, my 10 year old developed appendicitis and had to have surgery the next week!

Life finally returned to normal.  I returned to work only to be told a former patient of mine who had had two surgeries for melanoma several years prior to mine, was back in with malignant ascites.  A young gal whom I became quite close to.  It was so difficult to go see her but, I did.  It was my job to go draw her morning labs from her special line.... that was what I did, I was an I.V.Nurse.  We both cried and exchanged what had happened to us over the last 18 months or so.  This was in late September of 1989.  She was discharged to her parents home and died in November.  Was this where I was headed?

In the late Spring of 2007 while making the last minute arrangements for my oldest daughter's wedding I found a lump in my left groin... how can this be?  I put this off again.  I had had a persistant cough for 18 months, but everyone who listened to my lungs said they were clear.  Ha!  The wedding went on without a hitch.  I saw my Nurse Practitioner about the lump in mid July and had an appointment with my surgeon on July 27th... He was "stumped":  node, cyst, hernia?????  So, surgery July 30th, 2007.... and guess what:  recurrent malignant melanoma!   Was I surprised?  Not really, just scared.  It was day surgery so I went home to return to work in two weeks.

Re-cooperated, but still had the cough, back to workI went.  On the morning of my 5th day back, my "cough" seemed different and not in a good way.  Plus, I was much more short of breath.  I showered, and got dressed, all VERY slowly, stopping to get my breath.  I went to the triage desk on my way in to my department.  They wisked me off to a trauma room:  chest  x-ray then placed on Heparin, a blood thinner, and off to CT scan.  These indicated I had a saddle pulmonary embolism.   Off to Special Procedures for some clot busting.  One of my pulmonary arteries was totally occluded, the other about 60%.  Five days later and a new RS filterin my Vena Cava, I learned I was positive for Factor Five Leiden which increases my potential to clot.  So, home I went on inhalers, Coumadin, and various other "stuff".

I went to Beth Isreal Deaconness Medical Center, Cutaneous Oncology Clinic in Boston, MA on August 28th, 2007 to meet Dr. Michael Atkins, a world known Melanoma guru, and Dr. John Mullen, a Cutaneous Oncology Surgeon.  Everything was explained:  I was going to have an incision in my groin, like the end of a hocky stick; Dr. Mullen would take my Sartorius muscle from the inner aspect of my left knee and reimplant it over my groin for protection; and that I would go home with two drains which I would have to care for and keep track of their output.    The proper name for the surgery was a lymphadenectomy of the left groin.  A date for surgery was decided.

On September 27th, 2007, I drove from my home to Boston Logan Airport and picked up my sister and her husband.  We went to a local motel and checked in and got situated.  The next morning I had to be at the hospital at 6am.  And, that was just what we did.  I have no memory of anything from the time I was being rolled to the OR until I woke up ~ 8 that night.  Apparently I went a little crazy in the Recovery Room.  Versed and Morphine, what wonderful drugs.

The most difficult thing I had to do after the surgery, was to try to walk with a walker.  The pain the first time I tried to put any kind of weight on my left leg was the worst pain I had ever had, even childbirth.  OMG... awful.  I conquered this and proceeded on my road to recovery and was discharged after 4 days.

Six weeks after the second of two drains was removed, I started 17 Radiation treatments.  I did really well.  My only negative experience was in knowing all the staff,  some rather important information was overlooked:  Use Aquaphor on the radiated areas....   I ruiend quite a lot of underware.  But no burns.

Six weeks after I completed my Radiation, I started my 26 Intron infusions.  Every day at 9 am, Monday thru Friday except holidays, I reported to the Oncology Treatment room at my hospital.  Labs were drawn, IV fluids started for hydration, and when the labs were back and OK, I was loaded up with pre-medications:  Benadryl, cortisone, anti nausea meds, etc.  I had had a PICC line ( a long tube placed in your arm via a large IV needle and threaded up to just above your heart )  placed the week prior to starting my Intron which made these treatments go very smoothly, and once a week the nurses changed the dressing.  When my Intron was completed, I went home and took more benadryl and Tylenol and crashed until dinner.

I received 17 of the 26 infusions as my ANC (Apsolute Neutrophil Count) or total baby white cells, kept dropping.   At some point, I was told no more infusions and that I would start injecting mysefl with a much lower dose 3X a week for the next 11 months.  Well, I was stopped by the Boston Doctors in May after a chest  x-ray confirmed I had developed Pneumonitis from the Intron.  Go home and get better.

Well, here I am almost 3 years since diagnosed the second time.  I see my Boston doctors in a week and hope they say all continues to go well.

I have two lasting effects of my latest journey:  Lymph Edema in my left leg requiring special stockings; and, I am going to be using inhalers forever.  A small price to pay.  Besides, the compression stocking hides the hole from my first occurance.


Debbrock - (9/16/2015 - 11:36am)

How are you doing now ?

jenny22 - (11/13/2015 - 9:33am)

i was wondering the same thing....sometimes these posts are scary when there is no current update or dates posted......

preseuming when she says it was 3 years out, that this written in 2010...hmmm????