May... Brings Flowers of Hope...

I am not sure if other people in my BCCNS family have challenges with different fabrics, colognes and cosmetics  like I do. My skin has always been sensitive to things. I have been tested and I am not allergic just sensitive to things I put on my skin. With all the surgeries I have had the past 2 years my skin is A LOT drier than ever before and the two lines of cosmetics I could tolerate before now make me look like I have Rosacea. A friend of my mothers can only wear Clinique. I never associated that line with sensitive skin so I set up a make over. I went on a day that I had absolutely nothing else to do. JUST IN CASE. Well, I am more than pleased. It hides most of what I don't want to see in the mirror.

With Clinique

I know they are bad selfies but I could not resist.

Without Clinique

You know how when you look at something all the time it usually becomes almost invisible to you? My scars may have become that way to the people I deal with daily.  Myself, not as much. Every time I look in the mirror  ALL I see is the road map of scars all over my face and neck. The fact that the makeup feels like I am not even wearing any is amazing. I know there are other makeups that cover even more. I do not think I could wear those. I had been in the clown ministry at my church and that makeup created challenges for me. I also have acquaintances that do theatre and I cannot tolerate stage makeup either. So this is awesome for me.   

One of the blessings of this past year is the relationships that have developed in my life. I have new friends that have become like family. Friends from the "good old days"  with whom I have reconnected. Extended family that have becomes friends too. I have my BCCNS friends and my business friends as well.

My Mom (left) and my Mother (right)

My birth mother moved in with me a year ago.  She helps me with all my  medical appointments as well as my business.  My mom lives in Texas still and I have been blessed to see her every couple of months now instead of once or twice a year if I was lucky. There happened to be a business event in San Antonio on the 7th of May so I stayed over to visit with my mom for a few days. This year I had both of my moms on Mother's Day for the first time in my life. They actually enjoyed each others company. This is them sharing the dessert they brought home from our lunch date. The two most important women in my life at one table.



My cousin under went a double mastectomy the Monday after Mother's Day. She went home Tuesday in full makeup, with her hair done and wearing what I believe to be a beautiful pink lace  dress. She went back to work from home that Wednesday.  As of this posting she is cancer free requiring no other treatments. She has resumed running for exercise and is feeling liberated and strong. Most of the women in my family are very well endowed. She has no qualms with her new A - physique. Thank You Jesus.

It was also inspiring to see some of my business associates in San Antonio. Between Clinique and the weight loss there were a few who did not recognize me. Our next regional meeting is in September this could get interesting. Four more months to work on the weight.

I had the MRI of my brain and my mammogram on the 18th of May. I saw my primary on the 19th and the MRI showed no internal changes since the last scan. I have calcium deposits in the falx of my brain. Those have stayed about the same for the last 4 years.

May 20th I saw my Mohs surgeon to deal with the tumors on my forehead, nose and behind my left ear, This trip was very different as my husband had the tumor removed for the top of his right shoulder during the same day. His ended up being a lot larger than he or I thought; he left with over 20 stitches. I actually stood behind the surgeon and watched the entire procedure start to finish. Yes, two patients in one room. The surgeon thinks that was a first in his career. The only down side is my husband is not as good a patient as I am AND he is off work until the 22 of June. Pray for me.

As for my procedures, the spot behind my ear was done with one stage.

Surgical site post op




Tumor site pre op


 

 The surgeon opted to biopsy the spot on the right side of my nose also. The spot on the left side of my nose took two stages. The tumor on my forehead that everyone thought was benign took 4 stages to be cancer free.

Biopsy and surgery sites marked



nose and forehead post op

The surgeon was able to close my forehead most of the way there was a small area in the middle that was left open to heal.

My forehead after stitches

My husband and I were scheduled to return for suture removal on the 27th. That week was very interesting. My husband definitely has a new appreciation for my surgical procedures.  The 27th could not come fast enough for me.  Even after watching my husband through his entire procedure I did not notice that the stitches used internally were clear. The stitches externally were dark. Had I paid closer attention I would not have made another trip on the 29th to the surgeon's office thinking we missed a stitch or two of mine.  DUH!

May came and went. My mammogram came back with something of concern so they requested film from the last 3 that I had for comparison. No news as of June 1.

T.O.P.S. update as of June 1, 2015 I have lost 42.25 pounds. 



April Showers....Bring a Storm of Emotions

WOW!  This is what happens when you do not follow thru with things in a timely manner. The State Recognition Day with TOPS was in April; not March. Some how the calendar on my smart phone got messed up.  Dumb smart phone!!

The weekend of March 13th and 14th was a bowling outing with the Dinwiddies and the Johns families. These two families have special needs children that are now teens and young adults. Their kids have been active in the Special Olympics for years. These young people have decided "Aunt" Subrena needs to go bowling with them once a month for exercise. I will have to say it is a blast.

Our dear friends, Bud and Heather Dinwiddie went with us on out anniversary vacation.  My 1/4 pound weight gain was a result of those 10 days in Memphis and New Orleans. Still, the story of my husband showing me the quarter cup of water is the same.  REALLY!

So March ended with having lost 21 pounds since joining TOPS. I received a charm for 20 pound weight loss. It went on the charm bracelet I received when I joined along with the charm for state recognition day. These charms are serious business with veteran TOPS members. They are "badges of honor". There were people at the conference with necklaces FULL of them.

Easter was early this year.  For me, this has always been a time for reflection and repentance. This year my emotions were all over the map. Chief among my shortcomings was failure to attend my church regularly since the passing of my brother in law last September. I'm working to correct that. Easter was celebrated at a service in the Meramec Caverns.  I came out of it refreshed and more thankful than ever for the relationships and people in my life.

The 7 biopsies my new dermatologist took on March 12 came back positive. All of these were in areas that had been surgically cleared previously.  I pushed for a biopsy of one spot on my forehead even though the dermatologist and my Mohs surgeon did not think it was basal cell. Thankfully they humored me because I was right. Sometimes I would not mind being wrong. More Mohs was scheduled for April 20th and 27th.

The other thing I am doing with my new dermatologist is the Aldera cream on my neck, shoulders and upper back. She wants to see what reaction I get from the cream over the next few months. I  put the cream on nightly Monday through Friday and skip the weekends. I have set an alarm on my phone as a reminder even so I have managed to miss some treatments. The skin tags are obviously shrinking and other sites seem to be fading as well. I have attempted to take photographs but they are not showing the positive results my husband can see.

My BCCNS family knows how important it is to have physicians that you like and trust to help navigate all the challenges that come with this condition. There have been a couple of changes in my team this year.  I changed dermatologists, a change that went more smoothly than expected as she knew me indirectly from the surgery side of her group. Dr. Beardsley, my cardiologist, was so supportive and very informed on my condition. I was due to see him in June. He would have been ecstatic with my weight loss. He told me when I got to "Onderland", under 200 pounds, he might just have to ask his wife permission to get me a new outfit.  Unfortunately he died April 18th  (he and I were the same age).  So I will now consult with one of his group on July 14.

April 20th, we removed 2 tumors from the top of my head. Looking down at the top of my head, the crown area, there was a tumor to the left and one to the right. It is not always easy to distinguish location when I am lying back in the surgical chair. The tumor on the left was clear after the first stage. It appears really dark due to the cauterizing to stop the bleeding. The tumor to the right was clear after 2 stages.

The silver lining has to be that the recurring tumors are significantly smaller that the original ones that we removed over the past 2 years.

Top of my head toward the right

Top of my head toward the left

The tumor to the right post op

The site to the left (lower) post op

April 27th, we removed 2 tumors from behind my right ear. The tumor on the top was on new skin and required only one stage of Mohs surgery to be clear. The lower tumor required two stages and was cancer free. Again surgery sites are much smaller when the tumors are detected early.

Both sites pre op

Both sites post op

I met with my primary on April 29th. I was still experiencing stabbing pains in my head. He has also been watching my red and white blood cell counts to be pro active if signs of anemia or infection arise. During our visit I told him how exasperated I had been with the reoccurring tumors and surgeries. He said it was time for me to consult an oncologist to see what other options I may want to pursue. I have a consultation on June 25. He also scheduled an MRI of my head to see if there have been any changes since we last checked 2 years ago.

April ends with news that my cousin has breast cancer. She has opted for a double mastectomy and is consulting a plastic surgeon. I scheduled a very delinquent mammogram for myself  for May 18th. Radiology is able to do the MRI of my head on the same day. Some anxious times going into May for me.

TOPS update, as of May 1, I have lost 32.75 pounds. Woo Hoo!!

Life Happens - Part Two

It is beyond comprehension that I have now been on this specific journey 2 years straight.  It's been GOOD - even GREAT!!  So where was I...March that's right.

After receiving the $700 bill, I investigated the new billing procedures for my insurance and found that the group that billed for the dermatologist had varying fees and billing types for what I consider the same procedures. That alone left me with varying amounts that I had to pay out of pocket. When I questioned the billing office I was told I "did not understand the coding and billing process". OK. Isn't that why I called to begin with?  I wanted clarification of the IC9 codes they were using.  Instead I was made to feel like that was none of my business. I say again OK?  Who's paying the bill here and what am I paying for?  This was the last straw.  I was already uncomfortable with the doctor and now the billing office was less than cooperative.  Time for a change!

Mr. Parker waiting his turn

I had an updated body skin check and consultation on March 12 with a new dermatologist. An unexpected and GOOD thing from the change is my husband agreed to be seen as well. It turns out he had three areas of concern. After biopsies only one was diagnosed a basal cell carcinoma the other two were benign. He now has a greater respect for what we BCCNS patients go through. This is a GOOD thing. We have had times over the last two years where I felt he thought I was over reacting to my surgeries as well as how my emotions were all over the map.

 .
March 13th and 14th I joined my TOPS weight loss group in Springfield, Missouri for their state recognition day conference. It was so empowering to be with all those people who are on the same journey I am weight wise. Even more encouraging was the time I had to visit with people that have lost well over a hundred pounds and kept it off. I thought I did well with my eating over that weekend but I came home to weigh in and had gained 1/4 pound I was devastated. I thought GREAT, just what I needed before celebrating my 20th wedding anniversary in New Orleans, Louisiana. I went home all upset and dejected. My loving husband went to the sink filled the measuring cup with 4 ounces of water, set it in front of me and said, "REALLY?". All I could do then was laugh.

I wrapped up March with time spent in Memphis on the way to 10 days in New Orleans...what a blast. That too was Great.

My ONLY bite of a Chocolate Hurricane

I managed to eat seafood and other treats while on vacation and still lost weight on my weigh in March 30, 2015.  GOD is Good!!

Life Happens...Part One

Throughout January I had been reading Eat To Live. After talking to my primary care physician, cardiologist and naturalist, I embarked on a second journey and radically changed my eating habits. I joined T.O.P.S. That is a national organization, Taking Off Pounds Sensibly. It just so happens one of the chapters meets in my church. I have found that when I commit to organizations with a team in my corner specifically to hold me accountable, in this case to weight loss, I am much more committed..

The first two weeks of January I concentrated on eliminating caffeinated and sweetened beverages. I had most of my sigmoid colon removed in 2012 and had gotten off of sodas at that time. Sweet tea and coffee with French vanilla creamer was another story. So gone was the tea and the coffee. By the third week of January I was eliminating what I considered white flour products. I was experiencing what I thought to be mild detox issues but nothing horrible.

My next BCCNS procedure was 1/23/15. My dermatologist biopsied a spot on my jaw, another on my neck and two on my back. He scraped and cauterized all of them. I transferred the pictures to my laptop 1/24/15.  I had intended to write my post the following week. I have no good reasons as to why I did not. I let Life get in the way.

The week of the 25th flew by however, I began the Aldera cream on my neck and shoulders. The schedule was to be treatments on Monday through Friday and get a break for Saturday and Sunday.

I had a conference with my marketing business in Kansas from 1/30-2/1/15. One of the speakers was Dr. Dwight Lundell, a cardiovascular surgeon, I got a minute to talk to him about my cancer and trying to change my body mass and chemistry. He said, " Forgive me but kill all the sugar that is what feeds the bastards (cancer cells). Genetic condition or not they have to be fed to grow." I came back home excited to get on with my journey. What I got the first week of February was flu like symptoms. I was down for several days.  It could have indeed been the flu or my body's reaction to the radical dietary changes.

On Monday, February 9th I sat down with my laptop to post on my blog. Well my laptop was not cooperating. I was to be in Fredericksburg, Texas from the 11th to the 18th of February so I took my laptop with me.  Mom and I proceeded to clean it up as best as we knew how and then took it to her IT guy. During my stay with her we discussed my sugar elimination and I realized I had still been getting more than I needed in salad dressings and my multi grain bread. So together we reread Eat To Live. More changes had to be made.

I left sunny Texas returning to dreary below zero Missouri and found myself experiencing severe pain along my scar tissue on both my head and my face. I spoke with my primary care doctor and he believes it was nerve pain. It may have presented due to climate change from my trip. I accepted the prescription he gave me but decided later not to take the medication due to the extensive side effects.

Some good news! In February I lost 15.5 pounds. Woo Hoo!! I have not missed many of the foods eliminated. I expected breads to be my nemesis. It turns out cheese is the bigger villain. I have craved it, pulled it out of the refrigerator cursed it and put it back. It only lives in my house because I do not live alone.

On March 2nd I sat down once again to blog.  My laptop crashed. My pictures were all on there but the computer doctor was able to at least recover those for me.

Another revelation that appeared with this new year is the new insurance regulations have affected me much more than I anticipated. It seems that now before any procedure on my BCCNS the tumor has to be biopsy proven. Yes, it must be biopsied to prove that it is BCCNS before treatment. Previous diagnosis does not apply. Just the procedure from 1/23/15 left me with $700 dollars in lab fees for the biopsy my insurance doesn't want to cover. Yes indeed,  LIFE HAPPENS.

This Race Is Not Over

Most marathons end at 26 plus miles. This marathon might be over but the race is still on. I learned the hard way you can not ignore BCCNS. This is a beast that requires your attention and diligence. It is a race to just stay up with it let alone get ahead of it.


Its been miles and miles since I thought my face was clear of any big tumors. Just a year later there are two more showing themselves on my left jaw. On December 29, 2014 my Mohs surgeon took care of those.

Two sites marked for surgery

They appear small and relatively insignificant. The lower tumor required two stage to get clear. The top tumor ran into another one below the surface and required four stages to get cancer free.

Both sites clear

My surgeon did some awesome stitch work. I got a mini face lift and  should have only a hairline scar. For a few hours after surgery my face stays blotchy and swollen. Once the anesthesia wears off the coloration and texture return to normal.

blotchy and swollen after surgery

day after surgery

I returned to the surgeon's office a week later to get the stitches removed. The area is healing nicely.

I saw my cardiologist January 12th. I do have a cardiac abnormality along the left wall of my heart. I do have scarring from a heart attack in 2000. Thankfully I do not show any signs of fibroma and he is not concerned that I might develop any in the future. He does require my smiling face to meet with him every 6 months "Just because". 

My back has proven a to be a learning experience. I got my first infection since starting this marathon on my back. Evidently the bandages and clothing promote enough heat to lead to all kinds of bacteria. I clean my sites daily yet I managed to get an infection. Thankfully, a round of antibiotics took care of it.  Due in part to my infection, my team has decided to take a more relaxed treatment schedule. 

January 23rd I will have more sites on my back addressed. January 26th I start a four week round of chemo cream on an area of my chest. Doctors are hoping this cream will work better than the first one I tried.  February 20th we will follow up on the status of my back and check for any change with the use of the cream. February 26th my surgeon will do another laser procedure on my face. We will decide what to do about my right nostril at that time. The scar tissue is still tight and requires some attention.

Aside from my cancer treatments I am seeing a chiropractor regularly to keep the rest of my body in line. I have started going to the YMCA regularly and am able to walk 2 miles each session. I have become more conscientious of what I am feeding my body.  It is my goal to lose at least 50 pounds this year and get in better physical health. 

The unspoken goal is to keep killing this cancer faster than it kills part of me.

Take Away Nugget: Don't get hung by your tongue. Speak only good things into your life and those around you.

Mile 26 with Basal Cell Nevus Syndrome

As mentioned earlier, my back will be the focus for the next few months. I had surgery dates on December 8 and December 23 of 2014. The technique we are using on my back is more of a procedure than what I consider true surgery.


Once I am checked in by my dermatologist's nurse, the doctor comes in and marks the tumors he wants addressed for the day. After he marks the area he numbs it with local anesthesia. On December 8, 2014, he removed five different tumors. Those are shown after the anesthesia in the pictures below.

First 2 tumors left of Mile 24

Third site the center of the nape of my neck

The fourth tumor is on the left shoulder area

The fifth tumor is on the left side of my neck

Once all the sites are numb the doctor performs biopsies on each one. This is new this year as the insurance companies are becoming more critical with all procedures regarding the skin.  Several of them don't pay unless each site is proven to be cancerous. At this point there should be no question about my having basil cell. My doctors are having to go on the offensive to make sure they get reimbursed properly and I don't get wrongfully charged.

After the biopsies are completed the sites are E&C. That is electrodessication and cauterization. The tumor is scrapped away and the skin then cauterized to stop any bleeding.
I have found this procedure to be more uncomfortable in the days that follow than the Mohs surgeries. This procedure is more shallow and evidently affects the nerve endings at the skin surface in a completely different way than other surgeries.

On December 23 I had two more tumors removed.

 

Center of back next to Mile 24

Site on rear of left shoulder

Take Away Nugget: Never get discouraged about taking the time to do the right thing.

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.