Going into Mile 19 with Basal Cell Nevus Syndrome

No, I did not drop out of my race. Nor was I kidnapped by sympathisers. Things happened that were beyond my or my surgeon's control. Therefore my surgery date for Mile 19 was pushed to June 18 giving me 8 weeks between surgeries. After more bouts with nausea and dizziness, I was glad to have my surgeries spread out a little.

I have reflected about the last year. The last 21 surgery days. The number of days I have had to sleep in my chair. The functions I have missed and the ones I went to in bandages and all. The blessings I have received from loved ones and strangers. The rudeness of others, both family and strangers .

In less than 3 months I will be 50 years of age and have worked in some capacity since I was 12 years old. My inability to return to work at full capacity by July 30, 2013, has rendered me jobless. No longer just out on leave. The thought of being jobless bothers me a lot more than I thought it would. You have to love your mom. My mom says, "Your JOB is to get ahead of this cancer".

That being my new mantra I arrived at my surgeon's office in a take no prisoners state of mind. My nurse reviewed a few options for me. We looked my scalp and face over good, making mental notes of the previous Miles and the current state of each one.

A lot of preparation has gone into this race. I had to have consultations with my primary physician, my primary dermatologist and my Mohs surgeon. These appointments began in March of 2013. Then there came the plan for treatment and conference calls followed by information being submitted to my insurance company

The Front View shows:


Front view before Mile 19

Mile # 1 My nose,  the surgery date was 6/4/13. After 4 stages the wound was 1.3x1.5 cm and cancer free. It is now just a raised scar down the length of the right side of my nose. My right nostril is still drawn up a bit. I may consider minor reconstructive surgery later. Another option may be steroid shots in the scar tissue to soften things up.

Mile # 3 My right forehead, the surgery date was 7/2/13. After 6 stages the wound site was 8.2x8.0 cm and cancer free. I had been doing great with secondary healing so this wound was left open as well. It was UGLY. This surgery is when the dizziness and nausea hit me full force and what lead to my being on leave by 7/31/13. There is a lot of scar tissue and my hairline is farther back than it used to be. Cocoa butter and awesome skin care have softened the area immensely.

Mile # 4 My chin, the surgery date was 7/16/13. After 2 stages the wound was 1.1x1.5 cm and cancer free. This wound was stitched up and is now just a dimple in my chin.

Mile # 8 (part 1) Under my left eye, the surgery date was 9/24/13. One stage left a wound of 1.1x.5 cm and cancer free. This wound was stitched up and you really have to know where it was to see it.

Mile # 13 The surgery date was 12/12/13. There were 10 small tumors on my left upper and lower eye lids. Only 3 were one stage, 4 others took 2 stages and the remaining 3 took 3 stages. When the Mohs surgeon was finished these tumor sites were cancer free. Reconstruction was done the next day under general anesthesia. My eye reconstruction surgeon used a skin graft from behind my left ear to repair the left end of my eye. These sites now are difficult to spot except for the grafted area. There are some baby tumors visible that look almost like little white pimples. These will be treated with a laser in my eye specialist's office on August 12th of this year.

Mile # 14 The surgery date was 12/19/13. There were 5 tumors on my right upper and lower eye lids. Three were one stage and the other 2 were 2 stages. Theses tumor sites were also cancer free after surgery. Again, reconstruction was the next day. No grafts were needed this time. My right eyelids like my left have baby tumors which will also be laser treated on August 12th of this year.

Mile # 18 The surgery date was 4/17/14. This is documented in my last blog post. All the graphic pictures are there and show all the tumor sites on my forehead. Reconstruction was done the next day by my eye specialist. Some of his peers in other states have been following my story and because of the extent of the surgeries are convinced he had ticked off my Mohs surgeon. Not the case I am just a hot mess with this Basal Cell. The scaring is fading more every day. The grafts on my forehead and upper nose are still prevalent. My hairline is softening up and hopefully bangs will grow back to disguise any abnormalities. My right eyebrow is no longer a natural curve and makes me consider shaving both off and drawing on new ones. NOT. Just another uniqueness for me to live with.

The Left Side View shows:



Left side view before Mile 19

Mile # 2 (part 1) The surgery date was 6/18/13. After 5 stages the wound site on my left forehead was 3.6x3.4 cm and cancer free. This wound site was left open to heal. There is minimal scar tissue visible most of the wound site has new hair growth.

Mile # 6 The surgery date was 8/20/13. The wound site on my left temple area required 5 stages. It was 4.9x5.7 cm and cancer free. This site was left open to heal. It has lots of scar tissue with no hair returning to my hair line. My new hairline is crescent shaped down to my ear and over 3/4 of an inch behind where it used to be.

Mile # 8 (part 2) The surgery date was 9/24/13. This tumor at left jawline took 2 stages and the wound site was 1.4x3.1 cm. This site was stitched and has left a barely visible scar line.

Mile # 9 is visible here but more so on the rear view. So I will address it with that photograph.

Mile # 16 The surgery date was 2/18/14. The wound site took 3 stages and was cancer free. This site was closed with stitches and is the fading scar line in front of my ear.

The Rear View shows:



Rear view before Mile 19

Mile # 9 (part 1) The surgery date was 10/8/13. The wound site was 3.1x3.4 cm and was cancer free. The site was left open to heal. The bald area on left side is soft fully healed but no hair is regrowing in this area.

Mile # 10 The surgery date was 10/22/13. We removed 4 tumors off the back of my neck. Two on left and 2 on right. All were cancer free within 3 stages and were stitched up. Scarring at first was dimpled, and overlapped. Now the scars are visible to the naked eye but flattened and fading.

Miles # 11 The surgery date was 11/5/13. Three sites across the crown of my head were left open and healed completely. The three sites are dimpled on my scalp but filled in fully with hair. Nothing is visible in photographs.

Mile # 12 The surgery date was 11/19/13. Three sites just below those done on Mile # 11 were all left open and healed completely. They are barely recessed and filled in fully with hair. They are not visible in photographs of these either.

The Right Side View shows:



Right side view before Mile 19

Mile # 2 (part 2) The surgery date was 6/18/13. The wound site along my right jaw was 1.3x3.4 cm, took 2 stages and was cancer free. This site was stitched up and has a fading scar line.

Mile # 3 is visible mostly from the "front view" and is addressed in that section.

Mile # 5 The surgery date was 7/30/13. Three spots along my cheek. One of which took 1 stage the second took 2 stages and the third took 3 stages. I was not feeling well at all and wanted to leave opting not to stitch these. That was not the wisest choice. This scar tissue is like my nose and will have to be dealt with to make less obvious.

Mile # 7 The surgery date was 9/10/13. This site behind Mile # 3 was multiple stages and left a wound size of 5.1x4.8 cm. It was left open to heal and only has an open area the size of a pencil eraser with no hair. The surrounding hair has it almost covered.

Mile # 9 (part 2) The surgery date was 10/8/13. The wound on the right rear scalp was 4.1x5.8 cm, took multiple stages and was cancer free. There is a spot the size of a quarter remaining from this site. The jury is still out on whether hair will fill in completely.

Mile # 15 The surgery date was 2/4/14. We worked on multiple spots that appeared small. The two that became the most surprising were in front of my right ear and behind the same ear. They almost met at the top and after 5 stages each, the front of the ear was cancer free the wound behind the ear was not.

Mile # 17 The surgery date was in early March. We went after the remaining tumor behind my ear from Mile  # 15. The bottom rear edge of this site still remained not clear after another 4 stages. The size left to heal is about the size of a 50 cent piece.

So that's my recap now read on to see Mile # 19.


Take Away Nugget:

actually this song verse has been stuck in my head..
"...how many times have I cried God please take this...how many times have you said just keep breathing...God I need you now..."

The End of Mile 18... The Good...The Bad...and The Ugly

If I count reconstructions, I have probably actually hit Mile 20. My Mohs surgeon says we can clear up the rest of my head and face in 3 surgery days. That is GOOD.

Scalp stitches ready to be removed

My reconstruction surgeon says my new hairline should fill in. That is GOOD. My new hair line will be a little different. My old hairline housed an interesting cowlick so maybe that is gone. My vision with my glasses has returned to 20/20. That also is GOOD. The skin graft over the bridge of my nose has taken to its new home like it was born there. That too is very GOOD.

scalp stitches are gone and new hairline may have a dip

Unfortunately the top part of the graft on my forehead did not take and is dead. This is the area at the end of my suture line that looks scabby. That is BAD. The surgeon still thinks I will heal as well as I have with other surgery sites. He seems somewhat pleased that even part of the graft here took. Something about the skin on the forehead make it a very difficult area to graft.

The UGLY is that cancer does not just affect the humans we love it affects our pets as well. My husband and I rescued Harley over 8 years ago from a neglectful and abusive situation. He has spent the last 5 years living with my mother as her personal body guard after my step father passed away. Harley went to be with Jesus, Tuesday 5/6/2014. Cancer had taken his kidneys and liver.

Harley says "yum"

Take Away Nugget: Check your treasure chest. Are you keeping what really matters close to your heart? Do your thoughts, words and actions show others who you really want them to see?

INTERMISSION between Miles

4/25/14 one week after Mile 18

This is where things stood my last post. I was a week post op and wanting to rethink this journey all together. There are two grafts associated with this last surgery. The first on my forehead and the second on the bridge of my nose. That is what is hidden under the packing. The band aid on the tip of my nose is only an attempt to have something to hold my glasses on. My granny always said, "God has a sense of humor and he knows exactly how to get your attention". Isn't that the understatement of the year.

On Tuesday the 29th I had follow up appointments with both surgeons. My Mohs surgeon says my scalp sites are still healing marvelously. My reconstruction surgeon removed the stitches from my nose and central forehead area. Stage one of two suture removals. He told me he shared my case with some of his peers. One of them asked him if his Mohs surgeon hated him. I had to laugh, he has closed over 30 tumor sites on me in three surgeries. I am a test of his skills. So here I am today. The stitches in my scalp and down to my first graft are the ones to be removed Tuesday the 6th of May.

5/01/14 two weeks after Mile 18

With this surgery people have new assumptions as to what happened to me. Prior to this one a lot of people assumed I am a burn victim. Now the assumption is a car accident. I am a bit sarcastic in nature especially on "bad" days. A contractor working on my home yesterday did not say anything yet could not stop looking at me. I told him this is what it looks like if you live to tell that you were texting and driving. He did not look again. My husband said I needed a "time out".

I am in healing intermission from surgeries. My next surgery date is June 4th. I have been at this over a year. Next week I have an appointmet with my primary doctor to have a general checkup. He has not seen me since last July. That should be nteresting in itself.

So Happy May Day to all and God Bless.

Mile 18 with Basal Cell Nevus Syndrome

Day before Mile 18

Well away we go.This should probably be Miles 18 and 19 since it is two days of surgery. I realize the day before that my "security blanket" aka my bangs have 24 hours to live. My husband reminded me its just hair and so far all of mine has grown back.




I am still having to take 2 pain pills every 6 hours on surgery day. Getting ready for surgery I am not in my "happy place". I don't feel well and it shows. Thinking about it now I realize this is the first time I have seen my husband actually worried. My Mohs surgeon called the reconstruction surgeon and tried to reschedule one week later. My reconstruction surgeon is booked four weeks out. Its my call. I ask for ten minutes to get my big girl panties on.

Fifteen minutes later my surgeon comes in to mark off my forehead area. I have made it this far learning everyday something more about my body and how BCCNS works in me and on me. What is the old saying?  A picture says a thousand words. Looking in the mirror after mark up I realize it's going to be a long day. There are 15 spots to be addressed today. I visualize tumors sharing basement condos here. Eleven spots are clear after one stage. Thirteen spots are clear after two stages. The fourteenth was clear after the third stage and the last spot was clear after four.

I take my last look after the second stage

Ten hours later I look like I am ready for to be a Star Trek extra.

Bandageed after Mohs

 My glasses do not fit on my face at all. I am hoping after reconstruction that changes as I am virtually blind without them . I am less than twelve hours from that surgery at this poin.  I got about two hours sleep that night. I figure I will sleep after my reconstruction surgery.

I know I have said it over and over. I love my medical team. But the next day my surgeon comes in later than I expected looking more like he is ready for a GQ cover than surgery. Assures me he has had his double espresso and is ready to go. Then just as eloquently he takes off my Star Trek gear and says, "OH SHIT". I smile politely and remind him he just said that out loud. No wonder he says I am always a puzzle.

This is what he saw

Reconstruction takes three hours. He puts me back together with a three inch graft taken from under my left arm. I have not had a bad experience with the staff at the hospital. Free entertainment on the other hand has been abundant. My pre-op nurse has taken care of me on all three visits. My surgical nurse is 2 for 3. I have a new recovery nurse this time. She is trauma and military trained. She insists I will be in the car headed for home within the hour. My family evidently questioned her judgement. All I recall of recovery are two incidents. One is my husband laughing about dressing the drunk and the other is the nurse telling my mother that if we waited for me to be "AWAKE" we would all be sharing lunch tomorrow. My mother is not amused but evidently I am. The nurse was right, I slept all the way home. I slept through breakfast and would have slept through lunch if I had not needed a pain pill.

Day after reconstruction

Joy comes in the morning. Day two is much better except the glasses are still not fitting on my face. It is hard to tell from the picture but my surgeon opened my scalp up about two inches to pull skin down for my hair line to be more normal. The "cubed" bandages on my forehead and nose are protecting the new skin grafts.

I told my husband after seeing myself in the mirror to call AT&T I can do "Dont Text and Drive" commercials. He did not see the humor in that at all.

Blogging one week post op

Joy comes in the morning. I feel a lot better on day 3 which happens to be Easter and just take Ibuprofen for the pain. Pray for my family, please.  I am a great caregiver but a horrible patient.  I don't seem to remember that going through a health crisis makes people irritable and restless. My husband wants to lock himself in the basement and my mother wants to tape me to a chair.



I am unable to do anything considered activity. Trying to read, ride or even walk without my glasses has lead to headaches and nausea. A week after surgery the swelling has gone down enough for me to balance my glasses on the end of my nose. I have to keep the surgery sites covered in antibiotic ointment which of course keeps my face shiny and slimy. I put a fabric band aid over the end of my nose in an attempt to keep them from falling off while I catch you all up on the latest adventures of my journey. I get my stitches out Tuesday, April 29th. We will see what the grafted areas look like then.

Mile 17 with Basal Cell Nevus Syndrome

Site before Mile 17

I expected Mile 17 to be a breeze. My surgeon and I had discussed cleaning up an area we both thought to be minimal and superficial.  An area behind my ear from Mile 15 appeared to have very little remaining cancer along one edge. During that surgery day we experienced severe winter weather here. My surgeon and I opted, after multiple stages,  to come back to finish this site so that everyone could get home safely.

When I came back, the surgeon reviewed the maps from the previous surgery day and decided to take a larger stage believing we were going to be "one and done".

That was my hope also as Mile 18 was to be 10 days from this surgery date. Mile 18, my forehead getting the cancer removed on Thursday April 17, and the reconstruction handled on Friday April 18.

No such luck. After 2 large stages the bottom and rear were not clear. We opted to stop again for now.


Somethiing about that area of the scalp is extremely painfull. I had to take two pain tablets every 4 hours for the first 4 days and then two every 6 hours for the next 3 days. Went into Mile 18 feeling beat up.

Day before Mile 18

Headed for Mile 17...Thank You All

Thank You to everyone keeping track of me and my marathon. I had surgery in February and took the month of March off to recharge. I spent the entire month in Texas visiting family and friends there.

Most people I know in Texas have not seen me since last fall. They were excited to see that my hair is growing back in all my surgery sites. Something else they pointed out to me is that my nose and right eyebrow look more normal. The scar tissue on my nose and above my right eyebrow has softened significantly. This has allowed my nose and right eye brow to drop down.

March 2014

October 2013

I look at myself everyday yet I dont always notice all the good things. I have hair, it is coming in more grey. But I have hair...WooHoo

Rear View March 2014

Rear View October 2013

 My husband call my surgery site pictured above "Mick Jagger". He claims it looked like the man's lips upside down. To the right you can see no sign of the infamous lips.

Right Side Feb. 05, 2014

 24 hours after Mile 15 this is what my right side looked like at bandage change. Below is the right side two weeks later.

Right Side View Feb. 13, 2014

The view below is actually almost six weeks out from Mile 15. Lots of new hair coming in. I feel like the poster child for "Open Healing". That is not the proper medical term. My surgeon and I opted early on to watch and see how my sites healed. Having spoken to numerous Mohs patients one of the most common complaints to grafting large wound sites is the loss of hair in the area. I am grateful beyond words for my spiky hair. I have to thank my surgeon and his entire staff for their excellent wound care instructions.I have kept my sites covered with Vaseline even when they are able to go naked (without a bandage).

Right Side March 29, 2014

Thanks again to all of you who follow me, pray for me, laugh at and with me. I have received innumerable emails and texts this past month. People just checking on me since there has not been a post. I am truly blessed beyond words.

So I am rapidly approaching the 1 year mark on this journey. Bet you don't know any one else that has taken a year to NOT finish a marathon. Mile 17 will be on Tues April 8, 2014. Mile 18 will be my forehead area, like my eyes this will be a two step process. Thursday, April 17 I will have the cancer removed and Friday, April 18 I will get the site(s) reconstructed. There you have it, the next 30 days of my journey.

Mile 16 With Basal Cell Nevus Syndrome

This is where things stand with my surgeries up to Mile #16.
Mile 15 set me down fairly hard. We expected 4 spots with stitches. We got two with stitches. Both sites on my cheek with stitches were clear and stitches removed on February 11, 2014. The smallest spot on the rear of my head was clear after 3 stages. The spot in front of my ear was clear after 5 stages. Mile #3 (7/2/13) is the sealed new skin at the top of the new site in front of my ear. Mile #7 (9/10/13) is the site healing towards the top of the photo.  Mile #9 (10/8/13) is the small area healing above the new site behind my ear. The dates in parenthesis are the original surgery dates.

Mile #15 two weeks post op

The spot behind my ear was still not clear after the 5 stages taken. The site will get revisited late summer or early fall.  If I am reading the surgery maps correctly it is the lower edge that still shows cancer on the slides.

Mile #16 pre op

 My surgeon and I decide to do only the small area in front of my left ear.  Since Mile #15 gave us so many surprises we are attempting to keep Mile #16 simple.

Mile #16 appears innocent enough. The new skin above the site is Mile #6 (8/20/13).  The thin scar down the front of my ear is Mile #8 (9/24/13) .

Mile #16 post op

Mile #16 with stitches

Celebration!! Mile #16 is one stage and done. This site will get stitches.  Notice my hairline is almost back to normal down the left side of my face.  I am very grateful.  Above Mile #8, barely visible through my bangs, is Mile #6 (8/20/13).

With Mile #16 so close to my hair line my doctor opted for stitches that will dissolve. Therefore 7-10 days from now Mile #16 will be just a memory.  WooHoo!!!!! 

Regarding my face, the only other area of concern is my forehead.  My surgeon is working to coordinate this procedure with the same surgeon that fixed my eyes.  We are thinking April 2014 for the surgery. 

Speaking of 2014,  I will be having procedures 4-6 weeks apart after my forehead.  In addition, we will begin my alternative therapies as well. 

We are beginning the topical cream Efudex in a 5% strength.  I am blessed this cream comes in generic form, Flourouracil, it's $276.00.  My insurance covers it with only a $4.00 copay.  I will be using it for the next 4 weeks twice a day on an area on my shoulder.  The idea is to see how my body reacts/tolerates this treatment.  I can  easily monitor the area on my shoulder myself.

Trial area for Efudex

This area of my shoulder has 4 basals appearing to be superficial and one at the top right that is most likely a deeper tumor. I will use the cream twice a day for four weeks then the doctor will reexamine the site.  He asked me to wait until my stitches are gone and I do not require any pain management for Miles #15 & 16 to begin the treatment.  He asked me to monitor this area even more diligently than my surgery sites.  I am hoping to begin the treatment by March 1, 2014.  My husband and I asked why I should wait to start the cream. The answer is that like all drugs there are a host of side effects that can accompany this cream.  When the stitches are out and I am no longer needing pain management there will be no confusion as to what is causing any side effects that may arise. 

All that being said, I am heading to Texas once again for a sabbatical of sorts.  I am leaving Saturday, March 1.  The week of March 23 my husband is flying down to join me.  We will get to celebrate 19 years of marriage with my family in Texas.  I will keep you up to date on the Efudex therapy.

Take Away Nugget: Live Truly and You Will Truly Live