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.

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

I was blessed to be invited to a conference hosted by BCCNS Life Support Network. There was to be an intimate group of about 30 there.  I had yet to spend any length of time with someone who has dealt with this condition longer than I so I was really excited.  I was pumped for two plus days of back to back activities and speakers.

I flew in Thursday, Dec. 5. There were several of us due in at the about the same time. The plan was to meet and share a taxis to the hotel in downtown Ft. Worth. Before I even left the airport in St. Louis weather on the east coast had eliminated a research team from being able to join us. On the flight in I was seated next to a copilot flying in to DFW airport to begin his next 4 day rotation. He was flying out to Arizona on his first leg. I said that was awesome he would be flying away from all the weather. But alas he was to be flying back into DFW about 10 o'clock that same evening. I told him I would pray for normal conditions.  He agreed normal/boring would be great. Casual conversation came to a halt as we landed and he noticed the deicing machines going full bore. He turned to me and said, "So normal looks like it is out of the running shoot up you prayers for SAFETY". I learned more about weather and planes in the 15 minutes it took us to taxi to the gate than I had learned in the previous 45 years of flying.

Arrival at DFW brought more news of cancellations, delays and the like. I shared a taxi with Sheila and Jenny. What was normally a 40 minute drive was over an hour and a half. Once we arrived to the hotel we realized too many people had yet to arrive to have the meet and greet we had planned. Everyone agreed to meet at breakfast the next morning as planned. 

Wine and dessert at Thai Tinas

Lucky for me they had allowed my mom to meet me for the weekend. She had already checked in and was waiting in the lobby for us when we arrived. So I joined her for dinner in the Thai restaurant at the hotel. Weather lead to almost private dining and lots of conversation with the owner. Ms Tina treated us to a dessert sampler. What a way to start the weekend. My mom and I had a wonderful visit and could not wait to see what the next few days would bring.


If you are ever in downtown Ft. Worth do stay at the Embassy Suites. Sure they cost a little more. You have to figure your meal budget when you were deciding. They offer continental and made to order free breakfasts.  All rooms are suites and will sleep up to six with the queen sofa sleeper. In the evening they have a managers reception with chips, dips and other crudites. To go along with your snacks you may have all you can drink of the beverage of your choice. This includes their house wines, sodas, liquors and beers. Think about it sodas alone are $2 each on average now.

Tree outside our meeting rooms

 
The hotel was decorated for the holidays. It was very peaceful and elegant. I have used several hotels in the St. Louis area for different functions I have hosted. I will be paying a visit to our local Embassy Suites to compare apples to apples as they say.



The BCCNS Support Network hosted the event. There was abundant information available from brochures they provided to the presentations given. My mom had brought a book assuming she would not be interested in the sessions. The book went unread. For the two days of sessions we had our table covered with hand outs, pens and note books.

class in session

We learned in more detail the manifestations of the syndrome we all share. These types of sessions are priceless as BCCNS is an orphan condition.  Less than 100,000 are affected with it. We learned the latest information on the patch gene, the hedgehog inhibitors used to combat the dis function of the gene. This helped us to better understand our own genetic family. 

The guest speaker for Friday was Chaya Murali, a Genetics medical student with Baylor College of Medicine. She lead us in her program "Get It Write".  She uses this in her classes with children of all ages. We count as kids in the broad spectrum of things.  She uses writing to get people to come out of their shell. She initiates a written conversation with questions like"who do you most admire and why?" or "describe a time when you were brave".  If I remember correctly there were 10 questions over her 2 sessions. We had an allotted time to write for each question then were asked to share. I found this very insightful. These are things you might think to ask someone else going through a crisis, but neglect to ask yourself or the caregivers of people in crisis. Puts a whole different spin on things.

The hotel served a catered lunch of pastas, salad, tea and tiramisu. YUM.

After lunch we were blessed with a presentation by a young man only 18 years old. He has been dealing with the affects of the condition since he was 8. This first person story opened my eyes to several things I had not even thought of. One being this syndrome creates all sorts of emotional road blocks. This raises questions regarding how I am dealing with my fear, self esteem, anger, helplessness, etc. The second being who I have on my medical team. I have a General Practitioner, Dermatologist, Mohs Surgeon, Ocular Surgeon and Maxiofacial Surgeon. Based on conversations with several attendees regarding ways BCCNS manifests itself, I believe I need to consult an Orthopedist, Cardiologist and a Neurologist this next year. I will be discussing necessary additions with my dermatologist and surgeon over the course of the next few weeks.

Me and Mom on western night

Friday night was western night. The meal was BBQ Texas style,awesome, and fellowship with other attendees was great.  And that was just day one.

Take Away Nugget: You cannot find something until you define it..

Headed for Mile 13 with BCCNS

I can't believe I have had three weeks between surgeries. I am still healing great. I have been cramming a lot of events in a short amount of time. Tomorrow, Thursday Dec.12, I begin part one of Mile #13 removing the cancer off my left eyelid. Part 2 will be the reconstruction of that eyelid will be Friday, Dec. 13. Here are a few pictures to show the progress of healing so far.

Left Side 11-27-13

Rear 11-27-13

Right View  11-27-13

Crown 11-27-13

As of 11-27 everything is gellin nicely. Everything along my hairline is going naked. I trimmed more hair off after the 11-27 pictures to make bandaging easier.

Left Side 12-11-13

Rear 12-11-13

Right Side 12-11-13

Crown 12-11-13

In just two weeks time all wound sites are visibly changed. Lots of new skin showing. Wounds as a whole are less irritated looking more healthy bright pink. New skin is almost fully filled in at the hairline.

It is my intention to give you information about the conference I just returned from. I have my first eye surgery in the morning. I will do my best to complete the posts regarding the conference. It is my understanding from the surgeons that I will be sight impaired for a few days after each procedure. Surgery on my other eye is next Thursday. We shall see how it goes. No pun intended.


Take Away Nugget:  Pick a challenge bigger than you.