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. 



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.

Headed for Mile #12 with Basal Cell

I have been a little out of touch in the aftermath of Mile #11. My head resembles what I believe the moon's surface to look like. Somewhere in the mix my body is back at riding the tilt-a-whirl. My nausea has returned and brought dizziness to the party. The medicine I have for nausea does not help. I have not been in pain since 2 days post op. Yet the pain pills help the dizziness that in turn eliminates the nausea. Go figure.

I am used to working full time plus some this time of year. However, I have to say keeping busy is a chore while dealing with dizziness, nausea, etc.  My librarians and I are on a first name basis. I am reading a book every 2-3 days by authors I have not read before. The downfall is I  am getting authors, story lines and characters all mixed up.  Maybe I should write a novel myself. Although having vampires take over viking ships in the reign of King Alfred and get shipwrecked in South America only to raid wagon trains headed for the gold rush in California doesn't seem too convincing.

The big bonus for me at this point is all miles are healing great. All miles that have new skin now have new hair coming in if they are supposed to.  I am often asked if my hair will come in differently than it was before. At this point I am not on any medications that should alter my hair. However, the depth of several of my miles may have destroyed the ability of new hair follicles to form.  Time will tell.

Here are updated photos of Mile #6 through Mile #11. Mile #8 is not pictured as the suture line is not really visible in a photograph. My hair is still damp from the shower. At this point I can shower without any bandages. These photographs were taken 11/12/13 one week after Mile #11.

Mile #6 with remnants of Mile #2 at top

Mile #7

 Mile #6 is healed enough to be naked. I cover when going out and at night to keep it protected.















Mile #7 is gellin nicely and has little fuzzy hair just coming in at it perimeter.

Mile #9 Left

Mile #9 Right

On Mile #9 both sites are gellin and stay covered most of the time. If I am not going out I will clean both sites and leave them naked until I go to bed in the evening.

Mile #10 is the 4 spots on my neck. All have healed. I had almost 12 inches worth of stitches with the four spots we did for Mile #10. Two sites have puckered. My surgeon and I are watching those to see if with time (and cocoa butter) they smooth out. My camera does not show it as clearly as the camera the surgeon uses. I will have my nurse take a  picture to share with Mile #12.

Mile #11

Mile #11 is the reason I am going to scarves. This is why I think of the moon scape. All three are healing great and still require bandages 24/7. That is Mile #7 in the left portion of the photograph. The other thing my surgeon did for me in Mile #11 was remove 13 skin tags from under my arms.  Out of the 5 on the left and 8 on the right two have come back basal cell and will get excised later. Yes this was a vanity move on my part. Go figure all the nonsense visible on my head and I wanted my under arms clear.  I want to wear some sleeveless tops next summer. I have to have something to look forward to right?

I will spare you the photographs of my armpits except for the two that turned up basal. Once I see the maps Tuesday I can crop the pics to show only the bad guys. 

Maps? Yes, I heard you. Mohs surgeons have nice little body outline drawings (maps). Enlarged ones for the head, left side and right side. They mark and number all surgical spots and also update each one to accurately show each stage as needed.

Every surgeon may be different in how they mark. This is the first time I have gotten involved with looking at all my maps. They draw the area on the map that they remove with each stage and mark lines through it something like a compass. The stage removed is then placed in a dish with matching makings and taken to the lab. Then the stage is frozen and put onto slides. The technician knows exactly where each slide comes from based on its marking on the map.

Another question I get frequently is related to the size of the sites before and after the surgery. I flunked my due diligence there and have not documented that information. So Tuesday I will have my notebook in hand and have my nurse pull my chart. The surgeons always take a measurement before they begin and before they close or bandage the site at completion of surgery. 

So here I sit a day away from Mile #12. This is my last surgery for November. I still have the areas around my ears to do and one maybe two small spot on my scalp to address. My eyes have been scheduled for December.  There is no way to finish my head, face and neck before we welcome 2014. What is the saying, "we gave it the old college try".

Thanks again for all your prayers and support. I am still learning all the technology of our century. If you are trying to reach me please use myjourney.bccns@gmail.com and I will get back to you.

Take Away Nugget: All external motivation is temporary. Talk to yourself. Say only good positive things. Chances are you are the only person you truly believe anyway.

Mile # 9 with Basal Cell Nevus Syndrome

I made it through another Mile. WooHoo!! All you marathoners out there should have warned me about the challenges you hit at each mile. Mile #8 was definitely a (birthday) gift.

My surgeon and I are wanting to get my face and head cleared up by the end of the year. We discuss a plan to do that.  Next year begins reconstruction and my torso.

To keep on schedule I agreed to do two spot on my scalp today.   So one on the left and one on the right it is.  My goal for now is to stop over thinking. Or even thinking too far ahead.

Mile #7 (top) Mile #3 (bottom)

Lets talk about the status of Mile #7 first. The greenish spot to the right is an area that was trying to scab over. My surgeon cleaned this off. He says it does not hurt anything but can lead to excessive scaring. Mile #7 is at the top and Mile #3 is at the bottom, loads of new skin. Yeah!! Not sure how much change there is from last post. Look through the archives of my blog if you want to compare.










On to Mile #9.  This is the left side. Before surgery the spot is a little bigger than a dime and has been aggravated.

Mile #9 Left side Before

Mile #9 Left side After

 After 5 stages this is what we ended up with. The wound is a little over 2 inches in diameter.

Hallelujah it is clear of cancer all around.










 The right side surgery site is a little over an inch long.   After three stages we opted to stop on the area for the day. There is still cancer down towards the back of the ear and along the front of the ear.

Mile #9 Over Right Ear After

Mile #9 Over Right Ear Before

 Another reason to not put off treatment, the top almost merged with Mile #7 which you can see in the upper left of the 'after' picture.

Like I keep saying, if there is something abnormal on your body get rid of it.

Take away nugget: Don't be trapped in the wilderness of thinking! Be Content, Be Happy and Be On Purpose.

Passing Mile #7 with Basal Cell Nevus Syndrome

When visiting me here remember that this is an extreme situation of Basal Cell.
I neglected to let the small voice in my head seek out different doctors. Professionals that could get through to me how this is a type of skin cancer. Whatever the name given by the diagnosis, Gorlin, bccns, basal cell carcinoma are all kindred beasts that do not go into hibernation or go away. They must be removed and watched diligently.

The plan is as follows. I am currently going through Mohs surgeries to get rid of the larger tumors on my face and head. The surgeon will then be excising the smaller ones on my neck, shoulders and torso. After which he will be using laser therapy to treat the smaller flesh tone tumors on my face and neck. He will be removing the tumors on my eyelids as well. I will be meeting with an eye specialist regarding the reconstruction of my eyelids. On the positive side of this is I will be getting a brow lift and eye work done courtesy of my cancer and should come out of this looking 10 years younger. We are still not clear whether I will then do a topical treatment and/or oral chemotherapy.

WARNING PHOTOS OF MILE #7 ARE GRAPHIC

Mile #3 & #4

At the surgeon's office for Mile #7 the doctor and his nurse check out the progress on my previous surgery sites.  Mile #3 And #4 (on the right) has excellent skin regrowth and according to the surgeon could be naked during the day.  My cheek is naked except when I am sleeping. The new skin there gets agitated when rubbed against the pillowcase. 




Mile #6

Mile #6 (on the left) is gellin and healing great.

Mile #7 takes over where Mile #3 left off. The surgeon will be working towards the crown of my head. The nurse and I now place friendly wagers as to how far the cancer goes. We both predict the edge towards my ear will not be cancer free. The nurse and I are split on the outcome of the top and back sides. The front of Mile #7 should meet with Mile #3.

Mile #7 before

Mile #7 starts of with an irregular oval shaped mass. It is sunken in the middle. This tumor appeared clear all around. The deception of the photograph is evident in the end result. This surgery took 4 stages. The nurse and I are both incorrect in our wager. The cancer areas met but went clear at the site of Mile #3. Shocking to all parties is the fact that all other edges came back clean. It is hard to tell but the indented area in the before picture is indeed the deepest the cancer has grown so far.

Mile #7 After

This wound was left open like the others. I will have to keep the entire area covered. The skin on the previous surgery site is too new and will pull off with tape. Loosing skin to tape will add to scarring.

A few people have asked me about the stage and grade of my cancer. I had not previously asked my doctors this question. This visit I am told basal cell cancer tumors are not staged or graded at this point. There are people like me with very extensive tumors. Some have tumors in their brain linked to this condition. These persons like myself are not the norm for  basal cell cancers. Over 98% of basal cell tumors are still considered localized and do not spread.

Following is my understanding of how basal cell tumors are categorized based on discussions with the medical staff at my doctors.  You should do your own research in case I misspeak.

They can be Nodular. This is the classic basal cell carcinoma. Nodular and noduloulcerative basal cell carcinomas account for approximately 75 percent of all basal cell carcinomas. These are small firm masses of tissue. They are usually limited to the top layer of skin tissue. Inflamed red blood vessels and capillaries are a frequent sign of nodular basal cell carcinoma. They are found mostly in sun exposed areas of the head and neck. On a noduloulcerative basal cell carcinoma, the center is caved in a bit and appears "scabby."

They can be Infiltrative. This is basal cell that is usually smaller on the surface and goes deep into the various layers of the skin tissue. These types of basal cell tumors can be anywhere on the body. They tend to act like a pimple or mole that bleeds every so often then almost disappears to come back again at a later date.

They can be Morpheaform. This basal cell carcinoma can be very aggressive and difficult to treat due it's lack of clear margins. Mohs surgery is a preferred treatment method followed by a topical adjutant treatment. Morpheaform tumors appear as a white or yellow, waxy, sclerotic plaque that rarely ulcerates, and sometimes con caves (depression). The morpheaform will often go untreated and unrecognized as a potential danger by the patient and is a subtype of BCC that is the most difficult subtype to diagnose.

And lastly they can be Recurrent. This basal cell comes back in the same spot repeatedly.

Having Basal Cell Nevus Syndrome, I personally have all 4 types.  Lucky Me!

So Mile #7 is behind me.

I still want to shave my head. My husband has vetoed that thus far. I shall see what tomorrow brings.

Take away nugget:    Goals create Challenges and Challenges create Goals

My Texas Roadtrip

Thank You all for your support and emails. Please feel free to comment on the blog itself or follow me.  Who knows, your comments may help someone else.


Blogging from Texas

I am still on vacation in Texas. Texas is unbelievable. I absolutely love it here. I fly into San Antonio and go from there to visit my Mom's in Fredericksberg. We decided to make Labor Day weekend a road trip.

Saturday, my mom and I head to Dallas and visit the Museum of Biblical Art www.biblicalarts.org  . Fabulous! If you find yourself in Dallas with a few hours to spare it is very nice. We are there expressly to see "The Resurrection of Christ", a 12 foot by 40 foot oil painting, by Ron Dicianni. We spend 30 minutes just taking it in with it's audio tour. When we arrive we notice everyone getting out of their vehicle in suits, ties and heels. We are in capris and t-shirts, awkward. We ask the couple getting out of the vehicle next to us if this is the museum. "Yes, there is a wedding reception here."  They still allow tours with other functions, just a third of the museum is blocked off during this event.

We spend almost two hours there. A patron of the museum looks at me and says "That's what you get when you try to ride the bulls". While at home I hear: "you poor thing", "when was your accident", "how's the other guy" and so on.  Any time I am asked I give my standard reply, "Oh no honey I'm killing cancer".  Texans have an entirely different mind set .  At the hotel in Glen Rose people see my bandages and ask if I am part of the rodeo barrel racing. 
 
This is truly a special time. My brother is a grandpa now. His daughter is in town from North Carolina with her daughter for the long weekend. His older son is here from Waco, Texas where he attends college and lives with his wife and daughter.  I got to see family I have not seen in years. Kids of all ages are priceless. My great niece informs me that her momma told her I have an "owey", that's why I have all the bandages. She asks if they hurt, I tell her "not today", she says "good" and that is that.

Beware those of you having similar fates as mine. I did not think it was very hot on my brother's covered court yard where we spent several hours.  I ended up with heat rash under one bandage and my cheek actually started to bleed. My surgeon knows what he is talking about when he says stay cool.

Sunday morning we attend my brother's church, Stone Water, in Glen Rose. http://new.stonewaterchurch.com/glen-rose-campus They truly have a heart for God's people. My brother's youngest son was the lead guitarist for their praise band. He is starting college at Texas A&M this year, and is already moved into his dorm. I am believing he will find a church there he loves as much as Stone Water. It is the first time I was able to attend church with my brother at his home church. His church family was very welcoming and gracious.

After church we head for Fort Worth for lunch at Pappasitas. A friend of my nephew's gives me a hug and says he hopes everything goes better than I hope. Southern gentlemen come in all ages.

We visit the Fort Worth Stockyards. I call it Fort Worth's answer to New Orleans', Bourbon Street or Chicago's, Lake Shore Drive. It is definitely a tourist destination. Several motorcyclists visiting the area ask about my "road rash". I imagine I was quite the site. Everyone  is having fun in the sun and I am walking under a king size black umbrella. If I could have found one more appropriate for a southern belle I would have carried it. Hot and tired, we head back to Glen Rose after the 4 o'clock cattle drive down the main thoroughfare.  Guess the combination of exploring shops and the umbrella worked.  No problems with my "wounds".

Mom and I returned to Fredericksburg today. Odd being tired and exhilarated at the same time.



Take Away Nugget: Everyday GOD gives us a rainbow even if some days we can only see it in the shower.

Progress!! Heading for Mile # 7

I know I said I'd see you in September. But, something I needed to share dawned on me after my last postings.

I had intended to begin this blog at Mile #2. Obviously that is not what happened. This type of thing, blogging, is way out of my comfort zone. That will be surprising to people who know me personally. I do not have a problem with person to person interaction. Nor do I have a problem with speaking to people I know or have never met. I guess the problem here is I can't see who I'm talking to. Also, something about this journey seems so personal and private to me. It may be too that I am dealing with personal guilt having not figured this out sooner.

I finally mentioned this project to my Mom. She was understanding, encouraging and supportive. We made plans for me to visit her. At her request, I made notes for each Mile and got my photographs together. She said if I did not have my blog up before I got to her, we would do it together. 

So thanks mom. We've laughed and we cried but the blog has began.

Up to this point I have only given you the "Yuks"and "Gore". From now on it is my intention to share the healing progress also. The following photos, taken today are of Miles 1-6.  They are still graphic, but what a difference a few weeks make.  

Mile #1

As you can see, the nose is healed. I have been applying cocoa butter to the scar to keep it soft hoping to minimize it.  Reconstruction may be required but that's later.

Miles #2, 3 & 5

This view covers three (3) different Miles.  The Scar in front of my ear is mile #2.  It's healed and like my nose I put cocoa butter on it.

The temple area is Mile #3.  It is in the gellin stage. It still requires a bandage.  

The spots on my cheek are Mile #5.  They are in final stages of the gellin and can be naked in the day but must be kept moist. They still need to be covered at night since the skin is not totally formed over them.

Mile #4

 Mile #4, my chin is healed and looks like a dimple. Yes, it gets "buttered" too.












 

Mile #2 & 6

 The large area is Mile #6.  It is 9 days since surgery.  It has not reached the gellin stage yet.  Bruising & inflammation are almost gone.  It wears a bandage full time.

The pink area at the top left is from Mile # 2.  It was ready to go naked until Mile #6 surgery which cleaned up the bottom edge.  The basal by the ear will be a future Mile.






Take away nugget: Make a decision to stop making excuses. If you always make excuses. You will always have one.

Journey Continues at Mile #3

7/2/2013 - Mile #3

I have opted to do procedures every 2 weeks.  This is the best option for me financially given the insurance coverage I have at this time. This is a personal choice of mine, made after much discussion with my husband, close family and friends. Let it be known, I am not recommending this pace. 

My nose is “naked” when I am home. Meaning my nose is healed enough to go without a bandage. However, I still protect it when I am at work. The stitches are gone from my jaw and my forehead is healing great.

The “before” pictures from my surgeries have shaken me to the core.  I didn’t realize how extensive the tumors were. When you look at something every day, you miss changes that happen subtly even if you are in good light and have mirrors. Not only that but some areas we cannot view directly for ourselves. Looking sideways at my cheeks in the mirror was very deceptive, and the stuff in my hairline I could not see at all. If you or a loved one are concerned with basal or other skin abnormalities, be proactive, not reactive like me. Take pictures of the areas of concern every 2-3 months and closely compare them. These routine pictures can help identify changes more easily.  

Shown a picture of my right forehead, I had to prepare myself for my largest wound yet. 

Someone may see this and say “that’s nothing you should see mine”. I realize I am not the lone ranger, but I do not personally know anyone who has dealt with this. Besides, this is my journey. 

I like to talk through my procedures. I do not like the surgeon and his staff to talk amongst themselves, I want to be included. If you are facing anything like this or any outpatient procedure at all, talk to your surgeon and let him know your comfort zone. I’ve been told some like music, some like total silence and like me, some enjoy talking. It is your body and your money. Speak up during the planning sessions with your surgeon.

Before

After 3.5" diameter

 

My right forehead goes through two (2) large stages. The edge toward my ear and top edge again are not clear. 

They will stay that way until another procedure. 

The nerve above my eyebrow was nicked. I’m prepared for a black eye and some swelling, but the next day I only had some bruising and minor swelling. I think I have dodged the bullet. By Thursday afternoon my eye was completely swollen shut and I had to leave work. By 6 pm I could not even get my glasses on. When Friday morning came the only thing that came to mind when I looked in the mirror was, I have become the elephant man. I was swollen from my forehead to my lower jaw on my right side and across my forehead and the bridge of my nose. Being virtually blind without my glasses I am sure my description is lacking. I missed 2 more days of work until the swelling went down enough for me to wear my glasses.

Take away nugget: Laughter is truly the best medicine. Laugh at yourself out loud and often.   

7/16/2013 - Mile #4

The doctor and his staff say I “look a little beat up”. Imagine that. I have to honestly agree. I am healing wonderfully, yet I do have some bruising and mild swelling leftover from mile 3. We take on the chin which is a smaller area to give me a break.

From the outside the tumor is about the size of a #2 pencil eraser. It took only two (2) stages and ended up about the size of a nickel. Can’t just one of these beasts be in hibernation? Stitches would have made the wound longer so I decided to leave it open.

After

Before

By this time the doctor shows me each new wound before it’s bandaged.  That helps eliminate or at least reduce the shock when I do the bandage change at home. Note to self, any procedures around the mouth require use of straws for all beverages. Otherwise drinking and oral hygiene can be interesting.  

I am still working full time at this point. My co workers and regular customers have taken to calling me Patches. The chin itself has been a breeze. Not much to report there. My nausea and dizziness have increased and I am having low grad fevers. I go in for cultures on my wound sites and have an appointment with my primary in 2 weeks.  Because of the fevers I switched my multivitamin to an antioxidant formula added a B multi blend and extra vitamin C.

They have always said beauty is only skin deep. Thank GOD hair follicles are not. So far all of my shaved zones are nice and fuzzy with new hair. 

Take away nugget: Always find your “me” time. You should be your own BFF. Treat yourself the way you would treat others or want them to treat you. This is especially important when going through any type of crisis.

7/30/2013 - Mile #5

I am still looking a little beat up. By now things get on my nerves. You must remember your skin is your largest organ and you have to live in it. There must be a million nerve endings in your skin. In the process of healing they itch, sting, pinch and take a stab at you when you least expect it. Well expect it. All of these things can be normal during the healing process.

Before

After

We tackle my right cheek today. When looking at the before picture I am sure the bleeder misbehaving towards my ear will be the worst of the mix. Not so, the quiet shy one in the middle ended up being the problem child. It took three (3) stages. Makes  me think of Forest Gump. You never know what you’re going to get until you bite into it. 

 My primary doctor confers with my surgeon, and they agree I am to be on moderate activity and a 20 pound weight limit for the duration of my procedures. Pathology has proven the cancer much more invasive that either anticipated.  Once they put this into writing and send it to my employer I am forced to take medical leave. Thankfully, I have short term disability. This journey however, may exceed that. Do you have a contingency plan if you are unable to work? I am in the thick of it now. There is no turning back. I have to finish this race.

The silver lining is my chin already naked. The bonus, a scheduling error at the doctor’s office caused my next two appointments to be three (3) weeks apart instead of two (2). Since I am on an unplanned vacation, I am going to spend some time with family that I rarely see. If you find yourself in the same predicament, call a favorite uncle or cousin. You will be amazed who shows up with the cavalry. I am a blessed woman. 

Take away nugget: Absolutely everything happens for a reason. Enough said.

8/20/2013 – Mile #6

The past three (3) weeks have been interesting. My body clock is still in work mode. I am up by 5 am every day with energy to burn. My local librarian and I are on a first name basis. Since mile 4, I have now read all of Dan Brown’s novels and am on my second Brad Meltzer novel . I have discovered a couple of other authors while talking to people in the library. I will investigate later.

My husband has a 4 day work week so he gets 3 days off in a row. The “royal we”, meaning I supervised and he smiling through it, cleaned out my sewing/craft room and the closet in our guest bedroom. By then we had his work bench covered in the garage with things I could live without. My niece came over and helped put together a family garage sale. That kept me occupied for a few days. We made a little money, visited with family and neighbors. Only had to make 1 trip to goodwill. 

The doctors have been telling me light duty, moderate activity, nothing over 20 lbs and by all means keep upright. Think about everything you do in taking care of yourself, your home, pets, etc. I kind of thought the doctors were exaggerating. I learned quickly tasks as simple as tying my shoes or trimming my toe nails does lead to sharp pains and bleeding from my surgical sites. So heads up. “Slip on” shoes and bartering with my husband to trim my toe nails has become the new norm. 

Back to the procedure of the day. This surgery is at my left temple. My left forehead wound from Mile 2 has healed to the size of a quarter. Yeah! I honestly believe the extra supplements I am taking have aided the healing process. As I said previously, the lower edge was not clear of cancer. Mile 6 takes up where mile 2 left off. 

Before

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My wound sites are beginning to resemble excavations to me. The wound is approximately 2 x 3 inches. Maybe I should see this as a renewable resource. Every time something ugly is removed, something flawless grows back in its place.

I think the swelling on both sides of my forehead is affecting my eyesight. That may have been partially true. It is certainly affecting the way my glasses sat on my face.  I stop at the ophthalmologists’ office. Yes indeed my glasses needed adjustment. 

Going into mile 7 the pace of this race has been set. I am keeping fueled, hydrated, rested and educated. There is no twelve step program to get through this. Support groups only exist on a national level, as only 1 in 40,000 of us has this condition. The clinical things are fairly well documented. Look up Basal Cell Nevus Syndrome, Nevoid Basal Cell Carcinoma Syndrome or Gorlin Syndrome. It’s all outlined on multiple sites. My challenge came in finding information in the progression and treatments of this cancer. Yes, it is slow in comparison to others. Yes, it is called non- malignant. Yes, some tumors are very superficial, so other treatments might be fine for those. I find no documentation that the beast actually grows as much and possibly more subcutaneously than on the surface. The general consensus seems to still be that basal cells are no big deal. Well my surgeon and I beg to differ. We know that I am not the only one out there that has been miss lead. 

I also have a plastic surgeon.  He removed cysts from my right jaw and graphed cadaver bones into my jaw. I had a consultation with him last month regarding future reconstruction and checking my jaws to make sure they are still clear. He is unaware that I have not been fully informed by my previous physicians about the advancement of my condition. He says he thought I had just blown them off. Like I stated before, maybe my own ignorance got me here. That does not mean I cannot help someone else avoid the same mistakes. All skin tags, moles and other areas of concern need to be addressed, they need to be removed and tested. I am a long way from the finish line. I will not quit. With the technology we have today there has to be something that will make going through this type of thing obsolete some day. 

Take away nugget: People most precious to us are not always those given to us by birth. Family are people that have a permanent place in our heart no matter how they arrived. My family knows who they are. Does yours?

My plan is to post after each surgery (mile). I resume the 2 week schedule Sept. 10, 2013. See you then.