Mile 16 With Basal Cell Nevus Syndrome

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

Mile #15 two weeks post op

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

Mile #16 pre op

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

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

Mile #16 post op

Mile #16 with stitches

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

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

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

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

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

Trial area for Efudex

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

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

Take Away Nugget: Live Truly and You Will Truly Live

Mile 15 with Basal Cell Nevus Syndrome

I found myself very anxious going into this procedure. Even with extra prayer time and meditation I never got to my happy place. I was in a good mood but things were just "off". My surgeon's staff even picked up on it. I share this just because sometimes you have to put on your big girl pants even if you don't want to.

The surgeon and I originally decided on 9 tumors to remove. After hesitation on my part we agreed on 5. Both of us were convinced 4 were small enough to be able to stitch them closed. I would only have 1 beast to deal with.

Before procedure.

 The larger tumor in front of my ear is the one we expect to be a beast. Before we began I wagered 4 stages on the larger site and one and done on the other 2.

Before procedure.

Mile #9 is visible at top right with all its new skin and hair coming in. I have not had to wear any bandages since November. The surgeon marked the dotted line as he expected the tumor in front of my ear to wrap around my ear. He does have some concern that I may  loose part of my ear. We both figure one and done on the two sites here.  We expected to be able to stitch up these two small ones and the two on my cheek today.

I should know better than to wager anything. Three of the smaller spots required 3 stages to get clear margins. The one behind my ear and in front of my ear required 5 stages to get clear margins.

After 3 stages on smaller 2 and 4 stages on larger one

The tumor in front of my ear did not wrap around as anticipated.  It did go up to the margin of scar tissue from Mile #3 and the darkest area to the left is where the fifth stage required going deeper. With the tumor so deep, extra care had to be taken to cauterize the exposed veins. The 2 smaller spots did get stitches. I apologize for not having a better picture of that. We started my prep at 8:45 am and I got into my car at 6:45 pm to go home.

Smaller one after 3 stages larger one after 4 stages

The smaller site in the picture above was much deeper than expected. Yet the larger site in this picture was not as deep as the others but under the surface went a lot wider than expected.

Both sites after 5 stages

The stitched areas on my cheek are visible over the date on the picture.  Again I did not get a good picture of the two sites with stitches.  The healing area above the large site is Mile #9.

The swelling from these sites makes wearing my glasses uncomfortable. I am putting this post together Mr. Magoo style. 

I am on pain medication again. That is a given I guess.  However, the generic I received this time is from a different manufacturer than my last prescription.  All are not created equal. I am having moderate to severe bouts with itching. Now I am taking a type of Benadryl to eliminate the itching.

To aid my body's absorption of the drugs I baby my digestive track with Greek yogurt, fresh fruit and veggie smoothies and stay away from carbonation and caffeine. I try to drink over 100 ounces of water with fresh squeezed lemon to stay hydrated and detox my kidneys and liver as well.

Take Away Nugget:  Paths Without Obstacles Don't Lead Anywhere 

Headed for Mile 15 with Basal Cell

This year is starting off with a bang. People act like the polar vortex is a new demon. The temperatures in over 75 % of the United States have been below normal. What is normal? Mid Missouri has had more than a foot of snow above the average. What is average? Everyone of us is a different person this year than we were last year. So in a sense we have to have a new normal or new average. Wouldn't you agree?
   
Visited my eye surgeon last week. My vision has returned to normal ranges. My left eye is 20/20 with my glasses and my right eye is 20/25-1 with my glasses. He claims I am healing better than some 20 year old people. He has cleared me to resume normal activities and my surgery regimen with my Mohs surgeon. That being said, my next surgery will be February 4, 2014.

In February I will get the areas around my ears clean. Then in March we will get the forehead area clean. The forehead area will involve another visit to the reconstruction surgeon. During these surgeries the decision will be made on my next course of treatment. I am still researching topical, oral and photo therapy options.

January 27, 2014

December 20, 2013

 Take Away Nugget: What You See Depends Mainly On What You Look For

Happy New Year 2014 with Basal Cell

Happy New Year to ALL. Yes indeed I am late with this post.

I am pain free!! I have no stitches.  All my previous miles are naked 24/7 now.  Most swelling is gone from my eye surgeries.   But I'm getting ahead of my story.

Me and my 10 pound companion TBone

My reconstructi0n surgeon removed the stitches from my left eye before doing the reconstruction on my right. Lots of bruising and swelling. My depth perception was almost non existent. Every time I would take a step I felt like the earth was moving in the opposite direction. It is not obvious from the picture below but the bridge of my nose was swollen to the point of being flat. Wearing glasses was not an option for over three days.

Dec. 21 looked about the same Dec. 25

Besides swelling there were other side effects.  Any over stimulation with sound, light or movement brought on headache and nausea. I spent a whole 30 minutes with family on Christmas Day due to these sensitivities. I am not sure they minded as I was quite the sight. My younger nieces and nephews are having challenges with my health issues.



 The stitches on my right eye were removed on December 27, 2013.  My vision at that appointment was almost 20/50. I'm sure they were giving me the edge there. Driving was restricted for another 10 days. Then I'd be limited to daylight only and no more than 10 miles at a time.
Today, January 5, is the day I could drive for the first time since my eye surgeries.  I had it all planned: first church then treat myself to lunch. Well I woke up to 4 inches of snow, church was canceled and by noon there were over 6 inches accumulated.  It is not expected to stop before 6 or so this evening.  So much for my day out. However, it is beautiful from inside.

looking out my kitchen window

And so this is how my 2014 starts. I see the reconstructive surgeon again January 14, 2014. I will not have any more Mohs procedures until after that appointment. The areas over both ears still need to be addressed surgically. 

I have been having some questionable swelling on the right jawline so we will be adding an ENT (ear, nose and throat) specialist to the mix in February. 

My team and I are in discussions about topical treatments. I am leaning heavily on trying one of the oral medications available for my condition.

Again, Happy 2014 to all and thanks for all your support through 2013. 

Take away nugget: The only thing you can control is your attitude. Pick a good one. This year I choose an attitude of gratitude.

  

Mile 14 with Basal Cell

I am attempting this without the aid of my glasses as they will not sit on my face.

Left eye one week post op

My left eye one week post op and prior to removing stitches.

Stitches were removed from my left eye yesterday. More below

Right eye marked for Mohs

 

 Only 5 tumors on right eye. Out of the five only one requires two stages.

Right eye only 5 tumors to remove

 I am already swelling in this picture. There is some bruising starting as well. The discoloration on outer edge of eye is leftover iodine solution from cleaning the eye pre op. 




The next day I have reconstruction on the right eye and my surgeon removes most of the stitches from the left eye.

Twenty four hours past reconstruction. You be the judge.

Bridge of my nose is too swollen to hold glasses

I am swollen from my forehead to my upper lip. They had me prepared to lose my upper and lower eyelids on the left eye. My upper right eyelid was iffy too. The cancer on other places on my head when presenting like my eyelids actually had tumors joining together under the outer skin layers. That is where I get the phrase "sharing a basement condo".  No condos on the eyes. So I get to keep the eyelids!  Thank you Jesus!! 

I have to keep Erythromycin, an ointment on both upper an lower eyelids for a few weeks. It makes me look really oily. The graft done on my left lower eyelid has taken great. You have to be within kissing distance to see it. Yes, the eyes are so swollen this is wide open for me right now.  Not very pretty but the cancer is gone and I have eyelids. Whoo Hoo!



Take Away Nugget: Be thankful for everything your senses show you.

Mile 13 with Basal Cell

With my vision impaired from surgery I will keep this short and sweet.

In My Happy Place Thursday 12-12

Marked for Mohs Surgery

10  Tumors Removed

After Reconstruction Surgery Friday 12-13

Five of the tumors required only one stage. The other five were clear after the second stage. No basement condos.  A lot less cancer than we thought. 



Reconstruction used graft from behind my left ear. Upper and lower eyelids were saved.  The white at lower edge of eye is gauze surgeon sewed in to hold graft in place.  It will be removed next Thursday. As you can see the other sites were sutured. 

To date without my eyes I have had 12 surgeries including 22 sites and removing over 210 square cm of tumors off my head, face and neck. Put all the masses next to each other and that is the size of an average dinner plate.

Thank You Jesus I could not have done it without you.

Take Away Nugget: Paths without obstacles don't lead anywhere.

My Trip Deep in the Heart of Basal Cell, Part Two

Saturday morning proves that whomever is at the hotel can stay and whomever has not made it will not get there. Ft. Worth has been hit by a weather system the likes of which they have not seen since 1998. I was pleasantly surprised that the hotel had put up all the staff in rooms both Thursday and Friday evenings. In these situations the hotel feeds their employees as well.

Our speakers for the day are from Texas Children's Hospital in Houston. I was not sure how this was going to be informative to me. We had a pediatric dermatologist and a Child life specialist. I was pleasantly surprised at their presentation. With the small number of us that made it in they turned a lecture into a general discussion about services available to children with BCCNS. They included personal stories from children who had been to camps for children with skin disorders.  Another part of their presentation was regarding helping children get through the daily trials of BCCNS.

In both of these presentations I realized most if not all of this related to the adult patient as well as the child patient. First, by replacing the word child in the lecture notes it takes on a more personal meaning for me. 

1) Although I have the disorder, I am NOT DEFINED by this disorder. BCCNS members say I have BCCNS but BCCNS does not have me.

2)Doctors do not always know best. I have to be my own advocate. I have to be a teacher.

3)Patience and a positive attitude will get me far. Do what I can to support others and get the external support I need.

4)Be a good listener and a good friend. You are not just a caregiver or example to just yourself.

5)Don't underestimate the power of touch. We all need reassurance  and touch is the most profound way to express caring.

The other part of the morning lecture regarded the child's point of view during the various procedures and treatments for the syndrome. Children are little people.  They are sensitive to what's going on and when they have the syndrome become wise and sensitive to procedures very quickly.  So many times doctors will address all or most of the conversation to the adults, only addressing the child when they want them to lie down for examination, treatment, etc.  They don't consider whether the child feels out of control lying down and would rather sit up or stand.  It made complete sense to me to find the position for the child during the procedure where they felt in control, supported by family and safe. No one wants to be ignored and talked about or above their level of understanding. Who wants to be forced to sit or lay in a position that makes them uncomfortable and vulnerable? And do we want someone to ask our opinion when they ignore it? These are things to consider when treating a child. Wording and body language are everything.

hedge hog family

Our afternoon and evening sessions were altered by the weather. Activities were canceled. This gave us the opportunity to go over the latest information on Hedgehog Inhibitor Drugs.

The drugs available so far have been in double blind studies. This is where neither the doctor nor the patient know if they are receiving the drug or a placebo. 

The goal to date for these drugs is to prevent new surgically eligible basals (SEBs).

Side effects vary. The cons to the drug do not out weigh the benefits for most people. There were 3 people in our group who are actively taking one of these drugs. Another person there was on the drugs but had to stop as their basal had mutated and become resistant to the drug.  All 4 had experienced varying levels of discomfort with the drug. So out of the 4 there one could not take it due to their basal resistant to it. One has been taking it for the 7 month starter dose and in Jan. begins the  year at 3 months on and 3 months off.  And 2 others have been taking the drug in cycles for a few years with very pleasing results. The side effects are not pleasant. All have some level of muscle cramps. Gatorade seems to be the going thing to help those. Taste disturbances vary with each person. Weight loss varies with each person. Hair loss or thinning varies with each person. And symptoms of depression are noted yet these same symptoms are noted in persons having repeated surgeries and other treatments to remove the basals.

I found the before and after pictures very interesting and intend to speak to my team as soon as I return to check into studies in my area.



Saturday also brought news of flight cancellations so we joined forces to try to get home. Part of our crew made it to the airport Sunday morning  and only half of those people made it home that day. Two of our group spent Sunday evening at a hotel closer to the airport.

This is our group plotting escapes for Monday.

l-r Subrena, Pam, Blake, Elvira her husband Adolfo and Nichole

I stayed at the hotel until Monday with my mom and after 2 shuttles and 2 taxis canceled on me I got the car service from the hotel and made it to the airport. My flight was to be in St. Louis at 7:15 pm. Due to delays waiting on flight teams, luggage carriers and the like I got into my vehicle in St. Louis at about 10:35 PM. By the time I got to bed it was technically Tuesday. I would not change anything. 

The time spent with the BCCNS Life Support Network was priceless.

Take Away Nugget: What you see depends greatly on what you look for.