Mile 25 with Basal Cell Nevus Syndrome

I can see why the term "Hit the Wall" is used in a marathon. Somewhere in the race your body just decides enough is enough.

My head is done with surgeries for now. I will do some photo light therapy over the winter. My face is done with surgeries for now as well. Mile 25 is a laser ablation over my entire face.Again I get grand ideas of waking up 25 years younger the next day. The truth is this is to soften the edges of my scar tissue and new skin to be more elastic and happy with my old skin. 

I arrive for my procedure an hour early. The nurse had called and thinks we can start early. Well starting entails having my face cleaned with acetone. This lovely treatment is followed by being slathered up with numbing cream and left to "cure" for a while.  Just like with some other numbing agents my skin swells. Great all I can smell is acetone. My eyelids are puffing up and my lips are tingling. I am ready to get on with this. After all people do this on purpose all the time right?

All numbed up and ready for the main event

Once I am numb. Well as numb as I am going to get I go into the procedure room. This is different, there are three machines in the room that I have never seen. 

My nurse explains each to me by name and in detail. This is what I get from the conversation: the big box on wheels is the chiller, the smaller box on top of that is like a mini shop vac and the tall skinny guy on the other side of the chair is the laser itself.

The surgeon comes in and makes sure I understand what is going on then gives me protective eye gear. Once he is convinced that I am Data from Star Trek he tells me he is going to give me a sample of the sensation on my cheek. 

It felt hot and immediately irritated. Ok so this is when the chiller becomes my best friend. The surgeon operates the laser, his nurse uses the shop vac to remove the skin being blasted  off and I get to blow this wonderfully frigid air across my face. I was clenching my jaw just a bit and he asks if I want to stop. "Does that mean I get the feel good gel?", I ask. Not until he is completely finished. How long does it take to do your whole face? Roughly 10-12 minutes. Why would anyone intentionally stop and prolong this. Nowhere in the literature does it say you will have the sensation of walking through a swarm of wasps. I believe I made a comment similar to "get to stepping". Exactly 11 minutes later I am handed a mirror. Still clutching the chiller in one hand I take a look at myself.

 

Immediately following procedure

My face went to Miami with out me and got stuck in a perforating machine on the trip. I am covered with little white dots. The had to pry the chiller out of my hand. No I am not kidding. Next comes the laser balm. I am slathered up for the ride home.

Covered in laser balm

I did not see myself after they prepped me for the ride home. So I took this selfie in the car. It does not do justice to the half inch of goo I am covered with. You can see it in my hairline. 

Once I get home I realize he got right into my hairline and I have some missing and loose hair in the laser balm. Even though my face is beet red I can see that the procedure has softened the edges of the graft across my nose. This is very promising. 

24 hours later

I was told the discomfort should be minimal if not gone by the next morning. That was not true for me. I was still very itchy and had a low grad fever the next morning. I was to have another surgery on my back November 21. My dermatologist  told me I looked a little beat up and had probably "hit the wall". My back was rescheduled to December 8.

I was told to use the laser balm for the first week at least and the redness could stay for a couple of weeks. Whenever the redness went away I could use my regular creams as long as I use ones with sunscreens and avoid sun exposure. That was not true for me the redness was gone in 5 days so I switched to my regular creams and apply them 3 to 4 times a day.

November 26 my face is barely pink

My family was prepared to see a lobster at Thanksgiving. Instead they asked if I changed my mind. Some are more curious than others and got up close and personal to look for the changes. There are no ridges between the old skin and new skin or scar tissue from my facial surgeries. The laser did not remove my scarring but it did smooth things out a lot. The jury is out on doing this again. We shall see where things are this time next year.

I had a follow up visit on December 2 with my eye surgeon. It has been just over 6 months since he reconstructed my forehead and across my nose. Another bonus that may reveal itself from the laser procedure is the elasticity of the skin on my forehead has greatly improved. My eye surgeon will check me in another 6 months. There is a portion of my forehead where the initial graft died. He is hoping my new skin will become supple enough to rework that area surgically and get rid of the small crater in my forehead. It is hard to believe that exactly one year ago I had my first consultation with him. 

Well 2015 may be a happier adventure than 2014 after all. I will complete this marathon between my appointments on December 8th and December 23rd. For 2015, i will continue to work on my back and explore more aggressively the options that stop the growth of this disease.

Take Away Nugget: It is the Season of Thanks and Giving. Do your part and pay it forward. Even I am not the worst off in my neighborhood.

Mile 24 with Basal Cell Nevus Syndrome

My full back has over 30 tumors visible

It is not pretty but it is mine. The morning before my first back surgery this is how it looks from a distance. It reminiscent of several astrological constellations piled on top of each other.

When I arrived at my dermatologist on October 21 he once again went over the big picture (no pun intended) with me on how he wanted to proceed. 

He decides to biopsy and cauterize the tumor shown towards my right arm. He believes this tumor to be very superficial. 

Tumor site marked and numbed

Tumor site after cauterizing

The tumor to the right in the cluster of three near the center of my back is also a target this visit. He biopsied then excised this tumor before stitching it up. This tumor lead into a nerve ending making the process of stitching it up not completely pain free.  This will bee the first site with stitches that gives me a lot of discomfort. 

The skin on the back moves with almost every movement we make. That being explained the dermatologist leaves stitches in the back for at least 10 days before removing them. I am scheduled Monday November 3rd to get my stitches out.

Tumor site after marking, and excision

Tumor site after stitching

Both sites 24 hours post op

 The spot in the top center of my back in between my shoulder blades appears to be more invasive. My dermatologist refers me to my Mohs surgeon to get this one removed. I get an appointment for Wednesday, October 29th for this procedure.

Tumor Site marked before numbing or first stage

 This site requires only 2 stages to be cancer free.The surgeon leaves it open to heal. I am used to this since over 90 percent of the sites on my head were left to heal the same way. The difference here is the wound will have to stay covered until it is healed over with new skin. The friction of clothing rubbing against the open wound slows healing and promotes infection. My Mohs surgeon supplies me with a product called duoderm to cover my back wounds. It is a medicated and padded dressing that is adhesive on its own. No more skin break down from tape if I am lucky.

After 2 stages site is cancer free

On November 3rd I got the stitches out of the incision on my back. The wound site is raised and tender but has healed nicely.

After stitches

 All three sites are doing well. my dermatologist checked them all when he removed my stitches.

All three sites November 3, 2014

All three sites November 12, 2014

I have a laser procedure on my face November 20. That procedure will be covered in Mile 25.


On November 21 I returned to my dermatologist to hae another surgery on some of the tumors on my back. I was very flushed, slightly nauseated and had a low grade fever. He attributed it to my laser procedure the previous day and reschedules me to December 8, 2014 to resume on my back. He did check the progress of my healing.

All three sites November 21, 2014

As you can see in all the photographs the duoderm has done its job. I have no skin breakdown from the adhesive. Duoderm is made to stay on up to a week. The wound site towards my shoulder held perfectly. The site between my shoulders had to be changed daily. The bandage just did not stay. So I had staining issues with my clothing and sheets from the wounds oozing overnight. That's why they make Shout and Oxy Clean.



Take Away Nugget: If God wanted us to see only black or white there would be no need for flowers or rainbows.

A Celebration in the midst of my Marathon

On September 28, 1964 I announced my arrival to this world. On September 28, 2014 I wanted to celebrate surviving it for 50 years.

Over the hill my butt. Hot pink is the color of the day for my celebration. I shared my day with my sister in law who turned 60 on November 8th. So we booked a hall for October 18th. We had a cake and punch celebration for church family and friends that afternoon. Our local grocer took care of the sheet cakes for the afternoon open house with loads of hot pink roses.

I was beyond surprised when my dear friend Donna came to the Open House. She lives over 60 miles away and has to rely on her mom and sister to take her any place she wants to go. They are an awesome family and we love them a lot. She absolutely adores my husband, Kim and demands hugs from her "lost husband" anytime she sees him. He thinks she is amazing. When he first met Donna she was still walking with crutches. here we are years later and her body just does not cooperate with her spirit.  People do not see the bright and witty talented woman trapped in the body that will not mend.

Subrena, Donna and Kim

Then at 4 that afternoon the DJ and caterers arrived and we flipped the room to have a dinner dance with family and close friends. We made custom centerpieces and gave them away to loved ones.









 

Our caterer kept with the theme except her daughter had to carve us a pumpkin. My favorite baker, Wedding Wonderland, home of the 2014 Next Great Baker winners, out did themselves with my design.

I can not thank everyone enough for coming to our celebration. It was bitter sweet as we planned this with still having my brother in law with us. He is greatly missed and we know he was there in spirit. My family came in from 5 different states and my best friend since junior high school, "Bozo" and his family made the drive to be with there too. 

It would not be my birthday at all if it were not for my mother, Mary who gave me life and my mom Dottie who saved my life.

Dottie, Subrena and Mary

Take Away Nugget: Stop, Drop and Roll will not work in Hell. Think about it.

Mile 23 with Basal Cell Nevus Syndrome

On Wednesday, September 24, I arrived at my Mohs surgeon's office for the last of the Mohs procedures of 2014.One spot behind my left ear.

Three stages later the site was cancer free. Whats even better, It looked like stitches were going to be possible.

So stitches it was. I was scheduled to come back Friday, October 3 to get the stitches out.

One of the down falls of not getting to my blog in a timely manner is loosing pictures. I had my stitches removed on Friday October. I should have gone a few days sooner. My head heals very quickly and some of the stitches were completely covered with new skin. With that type of swelling things can get missed. I made a return trip the following week on Tuesday the 7th of October to have a few missed sutures removed. This time they had to numb the area to get them out. And unfortunately those pictures are missing.


Take Away Nugget: If you find yourself trying to do something and you do not have the help you need, you might need to ask yourself if you are doing the right thing.

Headed for Mile 23, Part 2

September 23, 2014 was a beautiful day.

My birth mother moved here in May and has been a great cheerleader through all my procedures. Cheerleaders are great and I need one almost everyday. My coach on the other hand is my Mom she lives in Texas but that doesn't keep her from keeping me on target with my goals in life and my health.That being said there was an awesome pep talk the night before and I awoke in a great frame of mind.

I was admitted to the outpatient services at Barnes West in St. Louis Missouri for my MRI. the nurse I had for the procedure had an infectious smile and immediately put me at ease. She explained that I would be holding my breath more today than if I had visited a skunk farm. She promised not to let me turn into a smurf. She has done thousands of these procedures and has not had to resuscitate anyone, "YET".

Not only did I not become a smurf, I left an hour or so later feeling like that experience was a God wink in my life. A God wink is when something happens and you feel like it had been preordained all along for just that moment in time to help you get through what ever you were doing at the time.

Late in the afternoon my cardiologist assistant called and told me it would take a couple of days for them to get back to me on the findings. Just keeping me up on their timeline. That was nice. Just another reason I love my team of doctors. In the year and a half I have been on this journey only once did I call to inquire on something. Their staffs have embraced my craziness and kept me in the loop in a very timely manner.

So indeed, 48 hours later my Cardiologist called me and told me the old damage from 2000 is still prevalent and there is a thickening on the one wall of my heart that looks like the beginnings of a fibroid tumor. At this time we will watch and see. He will see me in January and we will discuss at that time what my options are. He definitely wants me to focus on my cardiac health and weight loss.

 Take Away Nugget: I would rather die thinking there is a God and finding out there isn't, than to die thinking there is no God and finding out there is.

Headed for Mile 23, Part 1

My team of doctors and I are already prepping for the new year. Insurance changes are being reviewed and we are going over the options for treatments in 2015.

On September 17 I met with my regular dermatologist. My insurance will not allow my mohs surgeon to proceed on my back without biopsies showing the cancer to be more invasive than regular excisions can deal with.

In previous discussions my doctors had agreed to do my back in quadrants. Meaning each surgery would clear up 1 of 4 sections of my back.On this visit my doctor said there are at least 30 tumors that need addressed and doing the quadrant plan would be too aggressive. We decided to work on the quadrants rotating around my back to allow healing on each section before removing more in the same area. We agree to schedule the surgeries 4 weeks apart beginning October 21, 2014

So my back will actually start on Mile 24. 10/21/14 then 11/21/14,12/23/14 and 1/23/15. By the 12/23 procedure we will have a better idea of how my back heals. At that time we will schedule more procedures.

Before Mile 23, I have an MRI of my heart on  September 23 to address. 

Take Away Nugget: If you're not satisfied with your church. Look inside not elsewhere. It does not matter what church you r stay home from

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