Mile 22 with Basal Cell Nevus Syndrome

It is August 12, 2014. I am thinking I am getting laser ablation (mini eye lift) to my eyelids. I have myself beyond excited because I think I will look 25 again. 

I get to my eye specialist only to find out the 10 or so baby basal cells are getting removed by using a microscopic laser scalpel type device. Bummer!!  No "25 again" for me - at least for now.  

For this procedure my eyelids are sanitized and then coated with a numbing cream. My eye doctor assures me that if the pain is too bad we can do the numbing  injections. He prefers to use the cream because it does not cause the area to swell like the injections do.  The cream is allowed to work so in 30 minutes we begin. It seemed to only take a minute or two and felt no worse than a mosquito bite. When he was finished he gave me a mirror and the areas he removed were little red dots. So tiny in fact they do not show in my photograph.

My eyes were itchy most of the afternoon by bedtime I had no symptoms to even know I had had a procedure that day. 

The evening did bring bad news. My brother in law, Keith, has been battling cancer since 2002. he has been in remission twice. This third battle has proven too much for modern medicine to combat. He is on hospice effective immediately and our prayer is for a miracle healing at best and if that is not God's will then let him live to see his only daughter married on August 30. I would love to share a picture of me with him but he is a very private man and asked me not to share any photographs.  I could not love him more if he was my blood brother, he was a divine connection  for me. I am sure I will get at minimum detention when I get to heaven. I told God, "I am ready take me. Let Keith see his children and grandchildren grow up.".

His strength declined rapidly and he left to be with Jesus on September 1. So now his heavenly birthday is the same as my son's earthly birthday. I called my surgeon and he rescheduled me to Wednesday, September 10th. Heart break and stress are not good companions. I was admitted into the hospital Saturday morning with severe nausea, after extensive testing the conclusion is I had a heart episode some time late the prior Wednesday evening or early Thursday morning. 

I was released Monday, September 8th with a special MRI of my heart scheduled Tuesday, September 23. There is old damage visible on my heart, from a heart attack in 2000 and something else they need to see better along the one wall of my heart. There is now a concern about a fibroid on the wall of my heart. So a second call to my surgeon and my basal surgery is now postponed to September 24. So there you have it. I am sorry that I had such a lapse in my posting but my attention was needed elsewhere.


Take Away nugget: All of us need certain things from people closest to us, and not all people are able to give it ti us. LOOK for your divine connections

Heading for Mile 22 part 2

It is August 5th and I am feeling much better. The Dr.ordered sabbatical is evidently just what I needed.

I am still healing very well and quickly. I get daily facial massages to help the new skin become less tight. At this rate there will be no need for any scarf or bandages at my niece's wedding on August 30.

Mile 21 is gellin and the biopsied site is healed

 Mile 21 second site also gellin nicely

Mick Jagger on Left

One week til Mile 22. A laser procedure on my eyelids. One thing that is nice is that from behind I am looking pretty normal. I have to grow hair strategically to cover what my husband used to call Mick Jagger on the left in the photo.









Take Away Nugget:   Learn to separate yourself from the busyness of life and spend time with people that matter most to you.

Heading for Mile 22 part 1

July 31, 2014 wouldn't you know I woke up in my crabby pants. I have had several restless nights and have slept more in my recliner than my bed. I have to be honest most of it was my own fault as I got a phone call yesterday telling me my biopsy from Mile 21 was positive. So of course there is at least one more surgery. 

My husband informed me that I needed to breathe because he was certain I had graduated to my bitchy britches by 10 am. I told him I would try. God forgive me I failed miserably.

I got to the surgeon's office to find out he was running over an hour behind. (I am breathing) My new nurse came in to see me and she brought me samples of three kinds of Amish popcorn. Now I felt like a heel for my current attitude and last weeks. We had talked about several different things last week during my surgery. I had told her I love love love popcorn but can rarely have it since my colon surgery in 2012. She told me about the kind she buys and said if I could only enjoy it occasionally I might as well enjoy what she thought was the best. What a kind gesture.

As I waited, I wondered how many times my extensive surgeries caused people to wait for long periods of time for their follow up appointments. I chose a better attitude. So an hour and a half past my appointment time I got to see the surgeon.

Once my surgeon and I got together we decided on a plan. He believes that my insurance will not allow him to do treatments other than surgery for my cancer.  He advises me to see my dermatologist for other treatments.  

Mile 21 is circle on left
Mile 23 will be the spot circled on the right

He wants to wait til September 3rd to do surgery, Mile 23, on the spot he biopsied. This is to allow the Mile 21 surgery to heal as much as possible as bandaging will most likely overlap.  So he told me to enjoy my summer and my niece's upcoming wedding as he sent me out the door.

   

I will see my eye surgeon on August 12th for the laser treatment on my eyelids. Then I will follow up with my regular dermatologist on September 17th to plan and schedule laser or photo dynamic therapy on my head. We also have to get a plan together to clean up my back.

I still get a lot of questions about taking inhibitors or some other treatments. I have been told by my team and a rep for the company that they have had success stopping new growth and getting rid of smaller or superficial tumors. Having been misinformed for so long, I have some large tumor sites.  


Take away nugget: We often make the mistake of being overly concerned about what is happening in our circumstances when our priority should be what's happening in our hearts. 

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..."