Dec 14- 45 days

Just some update photos

Dec 8 - 38 Days in

Third fill up was not as easy as the others.  Everything went well, but I think we may have pumped in a little too much juice.  For about 6 hours I was in some pretty intense pain- even the Percocet had a tough time knocking it down. Make sure you always have a few of those on hand.

Dec 1, 2016- 31 days into expansion

Fill up number 2. Put about 25cc in each side.

Nov 17, 2016 - 20 days in - First fill up

20 days in and got my first fill up today.  We put 20cc in each expander.  One side is visibly much bigger because when inserted they were able in put in about 10cc of fluid to start.  The process of filling was not really painful, but it certainly felt wild.  There is a lot of pressure that made it difficult for me to concentrate and really wore me down.  We are on the way now...

Nov 9, 2016 - 2 weeks into expansion

Two weeks in and I am getting used to having the expanders up in my head.  No longer taking much pain meds other than some ibuprofen during the day and maybe a percocet at night, sleeping is still a PIA. One of the expanders did migrate, but we were able to coax it back in place and get the port to an accessible location. Swelling has finally subsided and tissue is starting to reattach to the bone allowing us to start filling the expanders.  Next week we will slowly start injecting fluid to get the party started up there.

5 days in

10 Days in 

10 Days

Note the bruising on my chest from all the fluid running out of my face

October 26, 2016 Tissue expansion Begins

Tissue expansion has begun.  This is creepier than I had anticipated - It is really wild to see the transformation from yourself to Payton Manning to Sloth. And that is just in the first 24 hours.

5 hours post op

6 hours post op

During the 2 hour procedure Plastics was able to install 2 tissue expanders between my scalp and skull. Over the next several months I will have periodical injections into the expanders to grow the tissue until we have enough skin to reinstall a PEEK implant where the bone was removed as well as take out any other skin 'fixes' (Grafts- Integra)we have done along the way . This will leave one nice seam of scalp to flap.

The part that surprised and concerned us the most was the amount of swelling that is happening. It is intense but I have been reassured it is to be expected from the medical team. If you are having this procedure done I would suggest getting a realistic expectation of swelling from your Doctor before hand.

10 hours post op

May 31- graft on

The photo below is the wound about a week after taking the graft from my leg.  Looking pretty good.  There is not much pain in my leg at the donor site anymore. I did blead my pants out a few times so make sure you have a good bandage system in place if you are out and about.

Now just waiting to put a tissue expansion plan in place.

May 20, 2016 - Skin Graft

After 6 weeks of healing since debridement to remove the tissue that died on my flap the wound was finally strong enough to accept a graft. The procedure went very well and tonight I am back at home.  With the Percocet pain is manageable but be prepared to spend some time planted on the couch.  Pain is primaraly in the donor site (the thigh in my case).  I have also been placed back on the wound VAC for the next 4 or 5 days.

Donor site

Wound ready for graft, all pink and healthy.

For the last several weeks I have been using wet to dry dressing to promote growth and it has also had to be cleaned up a few times by my surgeon.  In the photo below you can see bacteria that had started to collect around the edges of the Integra that had to be cut away.  

Approx. 2 weeks after Integra was put in place

Looks like the next step will have to be tissue expansion on my scalp. That is something I really was hoping to avoid  that but it appears there will not be enough skin to cover the new implant.  More on that to follow...

April 27, 2016- Pump off

Yesterday I was taken off the pump and staples holding the Integra in place were removed.  It's nice not being tied to the VAC. In the photo below we have a nice even pink layer of tissue growing. The Integra has taken hold and now it just needs a couple weeks to grow We will then have the graft taken from my thigh to put a nice top layer on.

I was cleared by the docs to return to work, something I am looking forward to getting back to.  However, there is some administrative confusion that I have to clear up before my employer will allow me back.  I strongly recommend keeping  detailed records of all your transactions and conversations that take place throughout your care including all interactions with insurance companies, employer and physicians. I have found folders and a notebook along with this blog have been helpful. Don't forget to save dated photos along the way. The photos serve several purposes including a way to look back if you have any questions about the progress (or set backs) of your wounds.

April 22, 2016 - No Graft

After 10 days on the wound VAC I was scheduled to have a skin graft today to fill in the the area where dead tissue was removed. I was put under, but during the procedure it was determined that the tissue is not prepared to accept a graft.  The area in question had to be scraped back down to the bone.  So more waiting...

The dark spot is holding up the progress

They did put in a layer of Integra. The Integra is made of Shark cartilage, so the only highlight of the day is that I am now part ocean predator. The Integra will provide a structure for vessel and cellular growth. It will take 14-21 days before we attempt the graft again.  Additionally, it was brought up today that I may also need tissue expansion before the implant could be reinstalled adding weeks to the process.  Damn.

Staples holding Integra in place, Dark area is sponge for VAC.

I have been very patient and stayed positive throughout this process but today was very frustrating. Ready for life to be back to normal. No vacation when you are not working.

April 12, 2016 -- VAC at home

I was released from the hospital yesterday with my personal VAC.  You can see below it is not very big or heavy, but it is a pain in butt being tethered to this device. Better than being stuck in the hospital tho. The biggest issue with the device so far is at night when it is quiet.  You can hear the sucking/gargling sounds of the machine pulling on your wound from the inside of your head, no escape.  I suggest having something playing in the background as you try to sleep or you will go crazy.  TV and podcasts seem to help.

My bag buddy for the next few weeks

I will go in twice a week to have the VAC cleaned and sponge changed. After 2 weeks we should know how the healing is going and how big a skin graft I will need for the wound to heal properly. The graft will most likely come from my thigh. 

Wound after debidement

April 8, 2016-- Surgery # 5, debridement

Anther week, another surgery.   When you are going through something continuous and unpredictable like DFSP and the associated risks I can't say how important it is to keep a positive sense of humor.  It is easy to start getting pulled into negativity- that will not help.

Just before surgery today

Sign of solidarity from Blanche after my first release

At my appointment with the plastics team yesterday it was determined that a portion of my flap is not going to make it and needed to be removed.  We do not believe it is infection related, but a vascular issue.  When I had the major flap bleed that started this downward spiral it was most likely the vein that feeds this particular part of my new scalp.  That was also compounded by damage from the pressure created by the blood dumped during the bleed.

After surgery today. VAC in place.

The procedure today seemed very routine and went fine.  Believe it or not there is not much pain as I write this only a few hours out of surgery, only a couple Norcos as pain meds instead of the much stronger meds needed after the other procedures.  Unfortunately  I am now hooked to a wound VAC and apparently no one at my insurance can approve taking the vac home until Monday- so I'm spending another weekend in the hole. Don't get me wrong I feel very fortunate to have good health insurance. With out it my life would be in financial ruins and my focus would most likely not be on my recovery. Makes me sad that that is a reality for good people who are unlucky enough to have a major medical event with out it. Damn shame. If you are currently uninsured I would highly suggest getting on a plan because you just never know. I was in very good health before all this went down.

April 5 -- Monitor

I was released from the hospital over the weekend, making 4 surgeries and 17 days spent in the hospital in March. Today is one week after the procedure to have the implant removed. I have two main concerns at this point; if the infection is retreating and the health of the skin flap. We are keeping a watchful eye on any changes on the scalp. Daily photos or photos of anything unusual are really helpful in keeping track.  You will do a lot of second guessing when monitoring your wounds.

Photo of weeping sent to doc

Today's daily portrait also sent to doc

Another thing that has certainly been helpful is the ability to text these pics to the medical team if you have concerns. It is important ask someone in the know if you can communicate with them between appointments. In my case it is the PA who has been very involved in my treatment. It is really helpful to get a quick informed opinion instead of Googling all the bad things it could be.  Yesterday I also became very dizzy on several occasions so I also brought that to her attention as well.

The infection is not so easy to track, I have just been taking my temp and noting any unusual behavior- dizziness, oozing, fever, mental function (lots of jokes in that in know). 

Today we went for a walk for a few blocks and it really wore me out like I had just completed the latest Richard Simmons VHS.  Just a reminder of the work that is ahead to get physically back to normal. Expect to be beat down for awhile but don't stay down.

The Dent

March 28, 2016 Infected

By early afternoon, we had preliminary cultures back on the fluid that had been removed from around the implant- the bastard Staphylococcal.  This was the crap news we didn’t want to hear. A fourth surgery was scheduled for early the next morning to remove the compromised implant.  It is believed that when we had to perform the first emergency evacuation of the hematoma, bacteria was introduced at that time. The drain bleed continues to stick it to me.

Damn you infection

The real bummer of all this is that now I will have to wait a few months before another implant can be installed.  I will need the infection to clear, the flap will need to grow strong enough to handle an implant, and an implant will need to be fabricated.  I will spend the summer with only skin between the world and my brain where the 13" circumference wide excision was performed.  If anyone has any creative helmet ideas, particularly for a professional environment, please pass them along.  Photo of my head once implant was removed below.

Time to move forward

  

March 27-- Another surprise

The day before I was to return to work, or so I thought, I woke up feeling like I had one of the worst hangovers of my life. Unfortunately, there was something much more ugly going on in my head.  The next sign something wasn’t right was when I stood up from sitting the couch. I became dizzy to the point of falling to the ground.  At that time, we noticed perhaps a little more fluid under the flap. About 3 episodes of Family Feud later, I checked my head, and the damn thing was once again filling up with fluids, but at least at a much slower pace than the major bleed a few weeks prior.  We immediately drove to the ER where the original surgeries were performed.  After a CT scan, it was quickly determined that I needed to be opened up once again to see what was going on inside. Side note: I don’t think it’s ever good when the ER Doc comes in after reading your history and comments on how exciting it is.

Pre operation. Notice swelling, felt very squishy

Post surgery 3, drain on opposite side. I will always be mindful of drain site moving forward

We had two major concerns after the third surgery this month. The first was if the flap could survive being reopened. The second was an infection.  During the surgery, the fluid was found to be a clear liquid similar to serum in a blister, not blood or a puss like liquid typical with infections. The clear liquids and fact that I did not have a fever or high white blood cell count appeared to be good news that there would not be an infection. The surgeon was able to make a relatively small incision in the flap this time around, so it appeared the flap may not have any issues.

March 12, 2016 -- Release Me

I was released after 11 days in.  Once home, we continued to monitor the condition of the flap and plan an epic backpacking trip in the Sierra Nevadas.  I have found it helpful in my recoveries to have a goal to work towards. Something exciting to research and get strong for. Everything was looking good to return to work at the 3 week mark as planned, even with the unexpected rupture/hematoma removal.

At home, I had the expected low energy and a generally crappy feeling for at least another week.  Below shows the progress of the flap. 

Cleaning up after the leech blood bath

March 6, 2016 -- The Event

After 4 nights in the hospital, I was feeling strong and ready to head home. Unfortunately, the drain had other plans for me.



The Trouble Maker

The typically routine task of pulling a drain turned into possibly the scariest 15 minutes of my life. When the tube was being removed, it ruptured something under the flap. Immediately, I could feel the blood pulsing under the flap.  It didn’t take long until my head was visibly filling up like a water balloon. It really got troubling when I started to lose control of my body and see psychedelic-esque visuals, coupled with the most intense pain I have ever experienced.  Unable to keep myself composed, I was left clinging to Carrie (who handled the situation impressively calm, and who has been there for me throughout) and counting on a swift response from the medical team.  I was quickly, although it seemed to take forever, taken into surgery to crack my head back open.  At that time, something like a liter and a half of blood was released.  Good news- no apparent neurological damage / bad news- flap is dying.  Certainly don’t want to lose flappy. If the flap goes the implant goes and we will have a lot more to work through.



CT after the blood was released - still a little troubling 

Carrie- Cool as the other side of the pillow throughout this BS

  

That’s when the leeches were deployed to save the day.  The flap was dying because of a blood flow issue. My simple understanding is that blood was entering the flap, but the veins were so compromised from the emergency procedure that the blood supply could not make it to where it needed to go.  The leeches act as pumps, as well as secreting peptides and proteins that prevent clotting further, to improve the blood flow. I spent several days bleeding out to save the skin--Thanks Leeches!

Start of leech therapy

Path of leech therapy

 I spent the next 6 nights in ICU working on getting everything strong enough to survive outside the hospital.

March 2, 2016 -- Going back in

The titanium has treated me very well, and for the most part, the scars of DFSP have never really affected my life. My flap has also held up like a champ and never gives me any problems. I highly recommend the wide excision procedure for complete removal of the cancer. It may look gnarly, but I really have been pleased with the results.

After over 2 years of serious cancer free life livin', and we certainly try to live life to the fullest, it was time to replace the titanium mesh with a more permanent PEEK implant like the one shown below. A couple of the reasons to do this are that the PEEK will be a stronger/more permanent and will not affect scans the way the titanium does. Is it the right choice to mess with such a good thing?? That’s TBD.

The initial procedure to replace the mesh with the PEEK went beautifully as planned. Photos of  the removed mesh with the mold of my skull used to shape the titanium follow below. Really shows the size of the excision.



Post operation #1