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.