Day 20

The progress is slow and at times can be very frustrating, physically and mentally.  You will go from times of feeling like you are almost over it to feeling like you were hit by a train. I have been trying to pull myself off of the pain meds (Norco) with mixed results. Once off the drugs for a short time I crashed into some 16 hours of deep sleep and the guts began working again. However, make sure you have extra pills on hand because when you need it, you will definitely need it.

Perhaps the best thing I did to prepare for this event is to get myself in the best place possible mentally beforehand.  Enjoy your time to the fullest and accept what is about to happen- take trips, climb mountains, have pints of heady beers with cool as people, whatever is good for your soul.  It is important to have a team of great people on your side. So if you are currently an asshole I suggest you change your ways, never know when you are going to need help.

Last known photo of the DFSP infected scalp- Red Rocks Amphitheater 

41 hours before surgery on the Summit of Arapaho Peak CO (13,400).

First check up- Clear Margins!

I went to my first follow visit with the surgeon since being released from the hospital. Awesome news, the infected bone and tissue have been analyzed and all margins are clear! With some luck this bastard will not reappear. Still unsure if any follow up treatments will be needed.

Today I also had the sutures removed from my neck and these buried staples pulled from my thigh. Not as bad as I had imagined, but my advice is to take a full dose of whatever narcotics they have you on in anticipation of something unpleasant going down any time you go in.

The graft is really taking well.  You can see the criss-cross pattern of moved skin starting to fill in covering the muscle. Dressings will continue to be changed daily for at least the next few weeks.  I am getting around better everyday. No crutches needed around the house, but still take them when I go out.

You should also be prepared for the stomach issues that come with the prolonged use of pain meds.  Have your favorite 'movement' remedy at the ready.

Progress

There is slow progress happening here. The graft site (to cover flap donor site) has shed over 50% of the xeroform protecting the wound.  Once all has flaked off that site is as good as healed.

The Flap donor site is a different beast. Although the dressing changes are becoming easier- the xeroform is not pulling the edges of the graft up off the muscle- gaps exposing fresh muscle are starting to fill in preventing that very raw pain that you brace for each dressing removal.

The vein that was tied into in my neck to supply blood flow to the scalp flap is still swollen and bothersome.  The sutures on the scalp all look OK and there are pockets of swelling we are keeping a close eye on.

All and all things appear to be healing as planned- Science is amazing

Home

I have been released from the hospital but the healing is only started. The time in the hospital was a blur, probably because of my lil friend;

It feels really good to be at home but I now realize I still have a ways to 

go before I am back to being me.

Luckily I have a great in house medical staff, she really has been the best. I'm not sure I could make it with our her support.

Here is to my team in the hospital

Meat Ball

Today was one of the more eventful days here.  The highlight being the unveiling of my new sexy legs.  Actually the donor sites look ‘great’ according to my physicians.    One other realization I had today is that not using your thighs for five days and having them chopped on leads to diminished dexterity. I looked like an infant trying to wobble down the hall way.

 

Ice, pee, pain

Be prepared to not have anything to drink for a long while as there is a chance another operation will need to be performed right away.  I had to wait 48 hours before I could take a full drink.  I was able to suck on ice cubes, but still a beating.

Once you are able to drink it is quickly realized taking a piss is one of the most challenging tasks you have ever had to do. And if you don't pee enough? In with the hose, right up the jimmy.

Success! 

Surgery

I knew it would be a long day in surgery, but was not prepared for the 11 hours I was under. I guess for me there isn’t much difference between 1 and 11, still something that I had not anticipated. If you find yourself in my situation it will be good to have you and your support team armed with as much information as possible. That is the main reason I am keeping a log of this account, just not much info out there on this particular cancer with bone involvement. 

Also on the day of surgery I was informed we were going to use a titanium mesh on the cranium instead of the PEEK implant. There were reasons for this including the ability to deal with recurrence, which unfortunately is a possibility. At the end of the day a piece of my skull about the diameter of a softball was removed along with a large section of the scalp, you can see scalp section in photos.

The Flap went very well, as did all of the procedure.  All of the lighter colored tissues in the photos were taken from my thigh to replace the affected area on my scalp.

I am currently on a cocktail of morphine and other helpful medications to dull the pain, not sure it is helping the writing.