Mile 21 with Basal Cell Nevus Syndrome

A friendly reminder, my pictures are graphic.

So Mile 21 was on July 23, 2014. I am believing this was my last surgery day.  Not that I am anxious to start laser or photo dynamic therapy as they have their own sets of challenges to overcome.

I was actually in a good place mentally when I arrived.  The first test for my sanity for the day came with the announcement that I would have a different nurse attending me.  My surgeon knows me well enough that he made not one but two trips to my room to discuss this with me before ANY exam or marking began for the day.  I have had the same nurse for every procedure and follow up since I began this marathon over a year ago.  However, I am on a first name basis with most of the office now.  I have visited with the "new" nurse a lot so it's not like she was a complete stranger. 

I must have been visibly upset as they got my husband and brought him back.  He was not much help. LOL.  He said, "Really!  You are the first person to tell someone to suck it up.  Put on your big girl panties.  Life is one change after another.  God did not put this person in your way today, he put her in your path.  Now what you do with her is what He's looking at."  Ouch!!  Talk about getting hit with your own words.

To top it off the artwork in my new room with my new nurse was a pig jumping off a dock into a pond.  For you farmers out there, I do know pigs do not do this in real life.  Very appropriate for me that day though.  So I calmed down and we got down to business.

One of the previous biopsies over my lip came back positive.  After discussion and more shaving on my head my surgeon decides to operate on three tumor sites and biopsy a fourth.

Spot 1 over my left lip pre-op

Spot one is the tumor revealed by the biopsy during Mile 20. It took two stages and did go into the top of my lip.

Spot 1 Post op

The surgeon opted to let this site heal open.  What they call secondary intent, I believe.  His concern was that stitching this site would pull my lip line and leave it looking more deformed than having a minimal scar along the top.  We shall see.

 

Spot 2 over my left ear and 3 is behind

Spot 2 was the beast of the day taking 6 stages to get free of cancer.  Spot 3 was just biopsied on  surgery day.

Spot 2 post op and spot 3

I have had tumors with 5 stages and even bigger wound sites.  This site took 6 to get cancer free.  Every stage looked like it barely had any there so the stages were smaller than previous surgeries. The whole point of doing MOHS is to leave as much healthy tissue as possible and still get all of the cancer.

Spot 4 behind my right ear.

 

Spot 4 took only three stages to get clear. This was the one we thought might actually be a beast and go into the area above it where a previous tumor had been remove.

Spot 4 post op

It may be hard to tell but after three stages the wound site was slightly larger than a quarter.  The pinker skin behind my ear is a previous mile where no hair is returning. We will have to wait and see if hair will return when this new one heals.

I have a follow up in a week.  That is when we decide where to go from here. Yes, I have said that numerous times before. Time will tell.

Take Away Nugget: Don't Mistake Simple People As Being Simple Minded

Mile 20 with Basal Cell Nevus Syndrome

A friendly reminder all my pictures are graphic. They show before and after my surgical procedures.


Everyone I know is going through something. Some of us are gong through more than one thing at a time.

It was my intention to post quite frequently. Life and pain management have gotten in the way. My surgeries may be winding down but I am still facing decisions for the truly superficial tumors on my face and the extensive tumors on my back. I just won't talk about the others scattered over my body at this point.

So on July 2, 2014, Mile 19 began with  the usual "Hi! How are ya?".  Then my surgeon went to work around my mouth. I think my husband thought he was headed for a quiet week. That silly man. There were 7 areas of concern around my mouth. The surgeon just biopsied the 2 small ones on the top of my upper lip. The remaining 5 got the Mohs treatment.

Marked for surgery and biopsy

Multiple stages and several hours later. I once again looked like I had been accosted by a melon baller.

Ready for closing

The one on my chin to right in picture took 1 stage and is cancer free. The two on my chin towards the center took two stages and are cancer free. The one under my nose on the right side of the picture took three stages and the lovely crater on the left took four stages. All came back cancer free.

My lips were swollen and numb inside and out. Thank goodness you can't tell I was drooling on myself.

My surgeon is awesome. He talks to me the whole time he is doing stages and closing. I need to take in a recorder as I am sure I would learn more if I could replay the conversations later. During this surgery when he was stitching everything up my husband was standing over his shoulder supervising.

He used different types of flap closures this time. For the life of me I cannot remember what he called them. Hence, the need for a recorder.

After Closing

By the time my surgeon was done with closing. I truly felt my lips had to look like a baboon's butt. I sounded like Elmer Fudd. I asked for a mirror. I was not reassured at all when my nurse, surgeon and husband burst into laughter at the sound of my voice. Not funny, guys!

So I went home with my long straws and assumed I would be on liquids for days. The next morning I was able to eat yogurt in very small bites with a child size spoon. July 4, 2014, I had ribs and all the trimmings at my in laws. My ability to eat wasn't pretty and I was a sloppy mess afterwards.  Also, I bit the inside of my mouth several times as the internal swelling was more of a nuisance than any of the exterior challenges. One week after surgery, on July 9,2014, I returned to have my stitches checked.

Stitches on July 9

My surgeon was pleasantly surprised at how fast I healed. He said he probably could have removed the stitches a day or two sooner. My nurse was the one with the task of finding all the stitches and getting them out. This was the first time I can say I was truly uncomfortable during the removal of my stitches. Most of them had skin grown over them. The area around the mouth has proven to be more sensitive than any area of my face.

July 22, 2014 three weeks post op

 I truly thought I would complete a full marathon (26 miles) just in surgeries. Mile 21 is scheduled for July 23, 2014, and my surgeon thinks that may finish the surgical clean up at this point. We will see what he says at the end of that mile.


Take Away Nugget: A photograph is an instant in time. How many instants do you make truly memorable.

Mile 19 With Basal Cell Nevus Syndrome


My mother had cut my hair super short. In doing so we uncovered 2 tumors on the back of my head that my doctor & I had missed in previous examinations.  That meant in all probability it would take more surgeries than we initially thought to finish my head and face.

As I mentioned before, I arrived at the surgeon's office with a take no prisoners attitude. We went over all the remaining sites that need to be addressed before I begin a different type of treatment.

My husband wanted him to do 4 areas total that day.  The 2 we did today, a third spot on the back of my head and a spot inside my left ear that apparently has my husband in a tizzy. I tried to remain calm and explain to the two gentlemen that I call the shots on my body.

So on this surgery day we did the "eyes" in the back of my head. 




Mile # 19 Pre op

The one on the left is one uncovered after my haircut. The surgeon was equally surprised about this spot. The bald spot above it is from Mile # 9. My nurse had shaved a large area during that procedure and this area had to have been just outside the perimeter. The one on the right we were aware of and concerned that it may share a basement condo with the tumors behind my right ear. If that was the case this little guy was the tip of the iceberg. That was the reason I chose only 2 areas.






Right side post op

The tumor on the right took 2 stages and is cancer free. It was deep as we expected but obviously did not join with the other tumor site. The last spot we know of on the back of my head is also flesh toned and just down and to the right of this surgery site.










Left side post op

The tumor on the Left took 3 stages and is cancer free. It is shallow compared to the other side. The area at the bend in the back of your head is more sensitive than other areas. My previous experiences with this area have had me sleeping in my chair. This one proved to be no exception. Almost two weeks later I am just able to put pressure on the site.







12 days post op

So this is what Mile # 19 looks like. In 2 days I approach Mile # 20. Thanks for all your prayers and support.








Take Away Nugget: You wont ever be SORRY if you trust GOD in the GOOD and the BAD in your life.

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.