Friday, April 25, 2014

Mile 18 with Basal Cell Nevus Syndrome


Day before Mile 18
Well away we go.This should probably be Miles 18 and 19 since it is two days of surgery. I realize the day before that my "security blanket" aka my bangs have 24 hours to live. My husband reminded me its just hair and so far all of mine has grown back.




I am still having to take 2 pain pills every 6 hours on surgery day. Getting ready for surgery I am not in my "happy place". I don't feel well and it shows. Thinking about it now I realize this is the first time I have seen my husband actually worried. My Mohs surgeon called the reconstruction surgeon and tried to reschedule one week later. My reconstruction surgeon is booked four weeks out. Its my call. I ask for ten minutes to get my big girl panties on.

Fifteen minutes later my surgeon comes in to mark off my forehead area. I have made it this far learning everyday something more about my body and how BCCNS works in me and on me. What is the old saying?  A picture says a thousand words. Looking in the mirror after mark up I realize it's going to be a long day. There are 15 spots to be addressed today. I visualize tumors sharing basement condos here. Eleven spots are clear after one stage. Thirteen spots are clear after two stages. The fourteenth was clear after the third stage and the last spot was clear after four.


I take my last look after the second stage


Ten hours later I look like I am ready for to be a Star Trek extra.


Bandageed after Mohs


 My glasses do not fit on my face at all. I am hoping after reconstruction that changes as I am virtually blind without them . I am less than twelve hours from that surgery at this poin.  I got about two hours sleep that night. I figure I will sleep after my reconstruction surgery.

I know I have said it over and over. I love my medical team. But the next day my surgeon comes in later than I expected looking more like he is ready for a GQ cover than surgery. Assures me he has had his double espresso and is ready to go. Then just as eloquently he takes off my Star Trek gear and says, "OH SHIT". I smile politely and remind him he just said that out loud. No wonder he says I am always a puzzle.



This is what he saw


Reconstruction takes three hours. He puts me back together with a three inch graft taken from under my left arm. I have not had a bad experience with the staff at the hospital. Free entertainment on the other hand has been abundant. My pre-op nurse has taken care of me on all three visits. My surgical nurse is 2 for 3. I have a new recovery nurse this time. She is trauma and military trained. She insists I will be in the car headed for home within the hour. My family evidently questioned her judgement. All I recall of recovery are two incidents. One is my husband laughing about dressing the drunk and the other is the nurse telling my mother that if we waited for me to be "AWAKE" we would all be sharing lunch tomorrow. My mother is not amused but evidently I am. The nurse was right, I slept all the way home. I slept through breakfast and would have slept through lunch if I had not needed a pain pill.

Day after reconstruction

Joy comes in the morning. Day two is much better except the glasses are still not fitting on my face. It is hard to tell from the picture but my surgeon opened my scalp up about two inches to pull skin down for my hair line to be more normal. The "cubed" bandages on my forehead and nose are protecting the new skin grafts.

I told my husband after seeing myself in the mirror to call AT&T I can do "Dont Text and Drive" commercials. He did not see the humor in that at all.

Blogging one week post op
Joy comes in the morning. I feel a lot better on day 3 which happens to be Easter and just take Ibuprofen for the pain. Pray for my family, please.  I am a great caregiver but a horrible patient.  I don't seem to remember that going through a health crisis makes people irritable and restless. My husband wants to lock himself in the basement and my mother wants to tape me to a chair.



I am unable to do anything considered activity. Trying to read, ride or even walk without my glasses has lead to headaches and nausea. A week after surgery the swelling has gone down enough for me to balance my glasses on the end of my nose. I have to keep the surgery sites covered in antibiotic ointment which of course keeps my face shiny and slimy. I put a fabric band aid over the end of my nose in an attempt to keep them from falling off while I catch you all up on the latest adventures of my journey. I get my stitches out Tuesday, April 29th. We will see what the grafted areas look like then.





Mile 17 with Basal Cell Nevus Syndrome

Site before Mile 17
I expected Mile 17 to be a breeze. My surgeon and I had discussed cleaning up an area we both thought to be minimal and superficial.  An area behind my ear from Mile 15 appeared to have very little remaining cancer along one edge. During that surgery day we experienced severe winter weather here. My surgeon and I opted, after multiple stages,  to come back to finish this site so that everyone could get home safely.
When I came back, the surgeon reviewed the maps from the previous surgery day and decided to take a larger stage believing we were going to be "one and done".

That was my hope also as Mile 18 was to be 10 days from this surgery date. Mile 18, my forehead getting the cancer removed on Thursday April 17, and the reconstruction handled on Friday April 18.

No such luck. After 2 large stages the bottom and rear were not clear. We opted to stop again for now.


Somethiing about that area of the scalp is extremely painfull. I had to take two pain tablets every 4 hours for the first 4 days and then two every 6 hours for the next 3 days. Went into Mile 18 feeling beat up.
Day before Mile 18


Sunday, April 6, 2014

Headed for Mile 17...Thank You All

Thank You to everyone keeping track of me and my marathon. I had surgery in February and took the month of March off to recharge. I spent the entire month in Texas visiting family and friends there.

Most people I know in Texas have not seen me since last fall. They were excited to see that my hair is growing back in all my surgery sites. Something else they pointed out to me is that my nose and right eyebrow look more normal. The scar tissue on my nose and above my right eyebrow has softened significantly. This has allowed my nose and right eye brow to drop down.


March 2014

October 2013
















I look at myself everyday yet I dont always notice all the good things. I have hair, it is coming in more grey. But I have hair...WooHoo

Rear View March 2014
Rear View October 2013












 My husband call my surgery site pictured above "Mick Jagger". He claims it looked like the man's lips upside down. To the right you can see no sign of the infamous lips.









Right Side Feb. 05, 2014
 24 hours after Mile 15 this is what my right side looked like at bandage change. Below is the right side two weeks later.











Right Side View Feb. 13, 2014

The view below is actually almost six weeks out from Mile 15. Lots of new hair coming in. I feel like the poster child for "Open Healing". That is not the proper medical term. My surgeon and I opted early on to watch and see how my sites healed. Having spoken to numerous Mohs patients one of the most common complaints to grafting large wound sites is the loss of hair in the area. I am grateful beyond words for my spiky hair. I have to thank my surgeon and his entire staff for their excellent wound care instructions.I have kept my sites covered with Vaseline even when they are able to go naked (without a bandage).




Right Side March 29, 2014

Thanks again to all of you who follow me, pray for me, laugh at and with me. I have received innumerable emails and texts this past month. People just checking on me since there has not been a post. I am truly blessed beyond words.

So I am rapidly approaching the 1 year mark on this journey. Bet you don't know any one else that has taken a year to NOT finish a marathon. Mile 17 will be on Tues April 8, 2014. Mile 18 will be my forehead area, like my eyes this will be a two step process. Thursday, April 17 I will have the cancer removed and Friday, April 18 I will get the site(s) reconstructed. There you have it, the next 30 days of my journey.