Let the Journey Begin

This is the story of my journey to understanding that Basal Cell is a skin cancer, and can be deadly.  It is not to be taken lightly, even when/if the doctor says “it’s only basal cell”.  It is important to research, question and be persistent to determine what you really have.  Again, this is my journey not yours. Everyone’s body reacts differently with basal cell just as with the common cold. My surgeon and his staff have encouraged me to do this blog instead of journaling. The thought is that by sharing my experience someone else may avoid the extremes I am experiencing. Also, I believe I am filling a void where there is not a lot of detailed information regarding actual diagnosis and treatment of Basal Cell Nevus Syndrome. 

My journey probably began years ago.  However, the understanding of Basal Cell Nevus Syndrome and the consequences of ignoring it really began with the surgical removal of my tumors. Pictures in the section It’s a Marathon not a Sprint are before and after each procedure with my commentary of what I am experiencing at that time. Be forewarned the pictures are graphic.

Myth #1-“It’s no big deal it’s just basal”. Myth #2 - “It won’t kill me it will just make me ugly”.  That was my mantra for years. You’d think I would have figured it out long before now.

Basal Cell Nevus Syndrome is no joke and will take you down a path you never believed you could end on. So here I am in my late forties and have ignored this mess for most of that time. 

I do not think I can honestly say I was misinformed. I have been seen by a few of the top oncologists, dermatologists and surgeons in the mid west. I consider myself an intelligent person. I do my due diligence. I won’t even make a recipe for the first time without fully investigating all the ingredients. So this path I find myself on is due to my own ignorance. I failed to do my homework. I failed to ask pointed questions. I failed to question things I did not truly understand. You get the drift.

MY JOURNEY BEGINS

Someone asked me, when did this all start? That’s hard to say.  It could have been when I was 5 and had a cystic mass with planters warts removed off my right foot. No red flags came then. Or could it have been when I was 10 or so and had multiple skin tags removed off my neck and shoulders. No red flags there. It was “just basal”.  Maybe it was when I was 14 and lost four of my teeth because the dental surgeon had to remove a mass in my left jaw. No red flags there. It was “just odd for someone my age”.  What about my first pregnancy at 20 that ended in emergency surgery.  It was a tubal pregnancy and a mass was found on my right ovary. Again no flags. “These things happen”.  Two more failed pregnancies and then at 31, I gave birth to a beautiful son who was delivered early due to hydrocephalus (fluid on the brain) found during an ultrasound.  By his first birthday the doctors found medulloblastoma, a brain tumor.  His oncologist asked me about previous pregnancies, my general health, family history again no mention of basal cell nevus syndrome. 
For my 35^th birthday I gave myself a stress induced heart attack. During the stay at my local hospital I became a lab rat to make sure everything was in order.  I was scanned,  x-rayed and wired for sound from head to toe.  I was told I had calcium in the falx of my brain and some abnormalities in my ribs.  Finally, I was told that “my biggest health concern was my weight”. Yeah I was really over weight.  
For my 40^th birthday I got another stay in one of our fabulous medical facilities with a hysterectomy and bladder reconstruction due to pre-cancerous tissue in both.During that surgery my gynecologist biopsied a mole I have had since birth.Before I was released from the hospital he had an appointment for me with a dermatologist, who immediately sent me to a skin oncologist and a Mohs surgeon. So at age 40, 35 years after my first cyst was removed, I hear the magic words “You definitely have basal cell nevus syndrome, a congenital disease. You will want to watch those spots and eventually get them removed.”   
There was nothing urgent in the doctor’s message.  However, I had several removed from my neck and shoulders. I got tired of being cut on so decided to ignore the ones on my head and face.  Hair covered my head lesions and the ones on my face were not dark and had not stated to bleed or misbehave. Again there seemed no urgency so I stopped having the excisions. 

The turning point came when I donated (reluctantly) my sigmoid colon to science in the summer of 2012.  My surgeon hoped to do a laparoscopic procedure. I woke up with a large incision on my abdomen. The doctor

found among other things a mass of cysts on my left ovary. It was this general surgeon who told me to talk to my new primary care doctor and get a new dermatologist. He said all these apparent basals on my face, head and other parts of my body could be very dangerous even deadly if they have spread to the brain. 

My primary sent me to a new dermatologist in the spring of 2013 and so the revelation began.

Know this, once you get the diagnosis you need to be fully engaged for the long haul.  What is fully engaged? Know your options for treatment. Know the potential side effects of any medications you will be given. This includes numbing agents, pain medicines and topical creams. Know ahead of time how any procedures may affect your ability to work, drive, or do any of your normal day to day activities. Set your priorities and timelines with your physicians, family and employer. Be realistic on healing times, you might not want to go to your daughter’s first communion with bandages visible. Plan your treatment to work with your life style. As you follow me on my journey the necessity for these actions will become obvious. 

THIS IS A MARATHON NOT A SPRINT

I’ve opted to do Mohs surgery for my face and scalp. With this surgery, the surgeon takes “stages” and tests the tissue between each stage. The goal is to reach a clear perimeter. See www.skincancermohssurgery.org for more details on Mohs. The Mohs surgeons ask you to be prepared to be with them several hours. I now have a “surgery day bag”. It contains my book of choice, crosswords, snacks and beverages. I am old school and those are the things that keep me occupied between stages. So my surgery days are going to be JUST THAT, Surgery Days. I know what people say. I’ve said it many times. “My time is valuable.” The bigger truth is my life is more valuable.

6/4/2013 - Mile #1
The plan is to start with my nose which has three (3) small tumor sites. What appeared on the surface to be small independent tumors turned out to all be connected under the skin.  It took four (4) stages (excising sessions) to obtain clean edges.  

Before

After

Some wounds can be sewn up, some can immediately be covered with skin flaps/graphs while others are left open to heal from the bottom up.  The wound on my nose was left open.

The staff gave me excellent wound care instructions. However, nothing could have prepared me for the “hole” in my nose. That “first time shock” as I call it; the first time I changed the bandage post op, was mind altering. I cried. Some of us have the cancer so concentrated the reconstruction becomes a separate race in itself. The first two weeks between procedures is when I learned the way my body is going to heal and react to each procedure. Days 1-4 are the most painful. Spot bleeding is a nuisance but normal.After day 4 the pain is more of an ache and throbbing sensation. Soon the bleeding stops and the "gellin" begins. The gellin is the site when it becomes sticky and gooey as the new skin comes in.

I missed only a half day of work during this treatment. I “freaked out” about the gellin thing and went to the doctor to have them check  the site and make sure I was not getting an infection. I am in management with a large retailer. The only concessions my employer would make are scheduling changes so I could be off on my surgery days. That was their corporate policy.

Take away nugget: Stay in your happy place. The only thing you can control is your attitude. Pick a good one.
 

6/18/2013 - Mile #2 

As my journey progresses I have a feeling I will get a much better understanding of the “beast”. The reality sets in on how much my negligence will cost me. 

This time we go for my right jaw and the left forehead. This time I am prepared for something bigger than the surface areas indicate. Another truth for basal cell, the tumors/lesions are not superficial.  They are growing below the surface at least as much if not more than what is visible on the surface.

 Right Jaw: It only took two (2) stages to obtain clean edges. And joy of joys the wound could be sewn shut !!

Before

After Stitches

After Stages

Left Forehead: Some of my hair had to be shaved to clear the area for surgery.  Surface tumors were deceptively small.  Five (5) stages later, the edge of the site toward the crown of my head is still not clear and the edge going down toward my ear is not clear either. The surgeon and I opt to stop for the day and get the rest in future procedures. This wound obviously cannot be sewn; it’s left open like my nose. 

Before

After 5 Stages 2.5 inch diameter

 I have questions that only time will answer. Will there be scarring that we cannot hide?  Will I have hair when this is over? We are into the subcutaneous layer.

Wound care takes on a new level. I am introduced to “sea weed”. The real medical term is calcium alginate wound dressing. It is a thicker padding that contains agents in it to nurture rapid healing and stop excessive bleeding. It sticks to the wound and is a literal pain to change. Note to self, take a pain pill before you change bandages. The people and animals you live with will thank you for it. Newcomers to the post surgery recovery are dizziness and nausea. There is a lot to be said for keeping your head up. Bending over increases dizziness and causes bleeding. I now add an anti nausea prescription to the mix. I am very aware of how my sleeping, eating and supplements are affecting my healing process. These procedures take more of a toll on my body than I thought they would. Let friends and family do things for you. With all the shaving beginning on my head, my husband was gracious enough to cut my hair so that from the back and side things looked normal. Normal is relative at this point.

The doctor has advised me to keep my head elevated, not to stoop over and avoid extreme temperatures. With the aid of my peers and staff I am still able to carry a full work load. I enlist their help to avoid working on ladders or in the coolers or freezers for any length of time. I did not miss any work during this leg of my journey. 

Take away nugget: Talk to yourself. You can keep yourself better motivated than anyone else. It is a proven fact that we never believe what others say to us as much as what we say to ourselves.