Walk like a Pirate…..

It official..it has been 1 week since Hermes #2 joined me. To say the least, it’s different. The surgeon, the same one whom can’t read a pathology report, said that this would be similar to my last surgery. For some reason I took this statement at face value. That was a mistake!!

While it hasn’t been horrible, I have had to break down and start taking the percocets ( about a 1/4 of the recommended dose seems to work..especially when you throw  in a scotch or two ). The biggest adjustment has been trying to not to walk like a pirate. I still can’t flex my calf muscle right and articulate my ankle correctly. So here’s the imagery….I walk normal with my left leg and shuffle my right leg around and repeat. Very much like a pirate with a wooden stump. So much so that my co-workers are trying to find a parrot for my shoulder. I fear that I’m going to start finding offerings of crackers at my desk soon..arrrrgggh!!!  (oops did I just slip into character…whats next wearing an eye patch)

Blymy….I fear that the combination of percocet and scotch is going to drive me to wear a bandana on my head and look for Davy Jones locker..not really.

Last night was the first night that the boys got a good look at Hermes #2. I had to change my dressings and this was the first opportunity the hole wasn’t covered with a bulky dressing that was stitched and stapled in place. Freddy wanted to see it and of course Theo wanting what ever his big brother was doing. ( Stephen was off watching Icarly)  After spending a great deal of time on how to address these issues with the kids I decided it was best to let them see it. If it’s not a secret and if Daddy seems to deal with it ok..then maybe everything will be ok. That was my thinking at least. So I proceeded to take off the dressings and let Freddy ask questions or tell us if it made him uncomfortable. So here’s the imagery that might make a 6  year old uncomfortable. A 3″ in diameter hole with wrinkly edges. Then there is a layer of skin graph ( a piece of skin altered to look like fish netting) stretched over the exposed muscle. I might be kinda of disgusting to most, but nopt to Freddy, he was interested. He asked a lot of good questions and seemed to be comfortable. I then elicited his and his little brothers assistance in re-bandaging the wound. This got them involved with Dads care and made them feel helpful and needed. All went well.

take care me hartys, may the winds keep your sails full and  you find a bottle of rum at the X

Hermes #2. bigger and (not so improved version)

Yesterday I had more surgery on my leg. The reason for this was because the last surgery had removed an additional tumor that they didn’t know about. Since they didn’t realize it was there, the borders weren’t what they would prefer. They got the mole, but wanted a wide margin to ensure that any little micro melanomas wouldn’t escape. So, Lynese and I left the house at 5am to get to the hospital in time. We were extremely lucky to get my awesome father-in-law to arrive at our house at 445am. Then Lynese was able to get her back up in at 630 to watch the daycare kids until we returned (Thanks Debbie).

Pre-op travels-

The surgery itself went well. I got to dawn the fashionably revealing green robe and the ever so stylish no slip red socks (very Christmasy). This time our nurse got my IV on the first attempt. The surgical student made an attempt to convince me to get a spinal block or even a nerve block….not a chance. I’m willing to let the students do what’s necessary on me to learn, but neither of these were needed. I then received my Fentyl and Versed combo and became as giggly as a little kid (off to sleepy land).  The surgery took about 1.5 hours to complete.

The surgery-

They expanded upon Hermes and tripled his size. The new version is about 3″ in diameter. To cover the new hole they did a traditional split skin graph. Thats where they shave off layers of skin from a harvest site on my thigh. They keep shaving until they get a nice healthy piece and then they split it to make it bigger. They harvest site feels like a really bad road rash.

Post op-

This surgery actually left me to the point of actually taking the Percocet this time. Hermes #2 actually hurts this time. So much so that I don’t want to put any weight on my leg. I’m glad that I decide against the nerve blocks. I would have been concerned to wake this am in the pain that I’m in. At least a 1/4 dose of the Percocet seems to take the edge off….but this sitting still shit sucks.

Finally, a big hardy thanks to all the University staff and especially a lovely Thanks to my beautiful bride!!!

O yeah-I need to welcome Hermes #2 …..he is going to cause me to be anti Nascar and walk with a clockwise turn.

Petscan…..Totally tubular experience

On Tuesday I got to experience my first petscan( probably of many) . To say the least, it was interesting and unique. I didn’t fully appreciate the gravity of the radioactive isotope that one gets injected with a Petscan.

I arrived at hospital for my Petscan with concurrent CT and checked into the imaging department. They lead me back to  the nuclear medicine wing ( clue #1). After getting changed they took me back to a special room for my radioactive sugar solution injection. This room was small and littered with radioactive signs- EVERYWHERE. Before my injection, the technician used a long set of tongs to pull a syringe from a large lead encase container. He placed the syringe into a lead brick. He then stood behind a leaded glass plate and looked at the solution to make sure it was the right stuff (Clue #2- if it requires so much lead it can’t be good). He then used tongs to place the syringe into a tungsten tube. This is so the technician can handle the syringe without actually touching it. The reason for tungsten is that is significantly lighter than lead, and makes handling the syringe easier. After I got the intravenous injection the waste needle was disposed of into a a standard sharps container……behind a wall of lead bricks ( clue #3). I was then taken back to an area to lay down for an hour. This is to allow the solution to circulate through my body in prep for the scan. During this hour, I had the esteem pleasure of drinking 2000cc of gastroview; a contrast solution to better id and view my abdominal cavity and its inner workings. Spoiler alert..clue #4. This room had a lead shield that was between me and the hallway. You know, so the people walking by won’t get overexposed.

After my hour I was then taken back to get the scan. This is the totally tubular aspect. The Petscanner is similar to a CT scanner just a few feet deeper.If you have claustrophobia, it might seem confined. So much so, that they will sedate people that can’t handle it. I got to lay down and was told to put my hands over my head…and stay still for about 30 minutes. Not so good. My hands and arms fell asleep in about 5 minutes. The next 25 minutes were not all that fun. During the 30 minutes, they would shoot all the CT pictures and then overlay the PET images for a very precise picture ( hope it was worth it). After the first round I was turned around and they repeated the prior process, but on my lower half. All together it took almost an hour.

When I was done they gave me a note to carry. It was basically a permission slip. It stated that I had been injected with a radioactive solution and I would set off radiation sensors for a few days. Where are these sensors you might ask…..in ER’s for one. So if I help transport a patient at work, the alarms at the ER will go off. That might raise a few eyes and hairs. Here comes the toxic avenger ..Ha. They did assure me that the severe potency, the half life, would be a few hours. This is good so I wouldn’t go back to work or home and possibly make healthy people sick.

Climb…..

Climb stands for Childrens Lives Include Moments of Bravery.

 

What is the goal of CLIMB?
Children will learn:

• that cancer is “not their fault”
• they are not alone
• coping strategies
• about cancer and treatment options
• how to express their feelings
• how to manage anger
• to communicate better with the parent or grandparent with cancer

This is the title/information of class that we have signed up to take with Stephen and Freddy. It will take four weeks and meets at University Hospital. These classes are set up  for the children to learn about their parents cancer and how to deal with their feelings. It’s an interactive group therapy that teaches about cancer and more importantly shows the kids that they are not alone. It uses art, play therapy and group discussion help the kids learn about what to expect. We are also considering another class called Lemonade and Cancer. This class is a one time class that gives the kids the opportunity to see the hospital and the treatments that their parents might be participating in.  I think these two classes will put something tangible in front of them and help them express themselves with us.

Lynese and I felt this would be a good idea to do before I start my therapy. I hope it better prepares them for the next year and makes it easier for them to talk with us. I admit that I didn’t think I would be at this place in my life that I need to prepare my kids for a difficult period in our life and it sucks! You learn as a parent that your kids are little sponges that want nothing more than to make you happy and it crushes them when they think they are failing at this. I want to do everything in my ability  to make sure that they don’t think they are failing me or that any of this is their fault. As a parent all I want is to protect and  guide my sons. It does hurt that they are facing a difficult time in their lives and that it involves me. I realize that I have no control over the base of this situation, but it does not make the pain any less. I really hope that this class will help them and us.

More on Hermes

If you have read the other posts, you would have noticed that I have nicknamed my excision hole “Hermes the hole”. Hermes has a short but checkered history with me.

I started to notice him a few years ago on my right outer calf. When I went in for my physicals with my Dr and my department physicals, I asked about my new little tag along. The Dr’s over the years have not shown any concern for him because he did not fit the typical mole cues to be worried about. According to the American Cancer Society, things to watch out for in moles is first and foremost, any new spots, or any changed in appearance. There is also a quick acronym to help remember : ABCD: A is for asymmetry, one half is not like the other, B Boarder, the edges are irregular, ragged, notched or blurred, C is for color, the color is not the same all over, D is for Diameter, the spot/mole is larger than 6mm or a pencil eraser. He was a plain jane typical mole that was symmetric, had smooth borders, and consistent yet  boring brown color. Several physicals later, I now believe that Hermes did not like being ignored and developed a plan to become more noticed.

Late this spring, I started to catch him with my finger nail when I would take off my bunker pants. He of course would bleed and heal. Then in a few weeks it would happen again.  After a few vicious assault by my finger nails he started to change!!!! He started to get crusty and rough, which meant he stood out more and consequently he got assaulted more. He continued to get more brazen and more ugly. So I hatched a plan of my own.

In July, I saw my Dr for my physical and asked if we could get rid of Hermes. He was becoming problematic and quite the eyesore. My Dr felt this was an appropriate choice and still wasn’t concerned about his appearance. She equated his horrible disfigured appearance to being necrotic tissue. Basically moles have a poor blood supply and won’t heal well. So, we scheduled his demise.

What we had not accounted for, was that Hermes had been busy underneath the skin and was mutating (and have little Hermes babies apparently). He had developed into a full blood melanoma with offspring of his own. The rest is recent history.

So how does one get a melanoma on their calf as a firefighter? Good question. First, the leg especially the lower leg is a very atypical location for a male to get skin cancer. What I found out from talking to FFcancer.org was that it is a very common place for firefighters. WHen I spoke with them, she asked where my cancer was, I told her, and she immediately asked if it was on my boot line. Having never pondered this I took a few minutes to digest what she asked and realized that Hermes was right on my boot line. The lady at FFcancer.org stated that this is a common location because the edge of the boot is constantly rubbing against the leg and breaking the skin down on a microscopic level. This basic breakdown in my natural defenses is what allowed the introduction of carcinogens into my body. One of the common bi-products of combustion at a typical fire is creosote, which has a direct link to melanoma. So this would appear to be the method in which Hermes came to me and become part of my life.

and now the kids know…

Last night we decided that it was time to inform the kids. We had gone back and forth on this, research multiple avenues and were hoping we wouldn’t have to do this. Yesterday morning my eldest Stephen came down stairs and hugged me.  He said he had a bad dream where the Dr’s had to take more stuff out of my leg and that I had died. That hurts!!!!It became very clear that he was aware that something was going on and we had to explain it to him and his brother ( Theo is too young to grasp this yet).It went a little better than expected, but it did absolutely cement the reality which is our future. I was most worried about my eldest Stephen. Over the last few years he has asked a lot of questions about how my parents died and how old I was. As we explained what was going on and trying to be positive I could see the fear in his eyes building. I made it very clear that this is a different disease than what caused the death of my parents. I also asked him if I looked sick or acted sick, to which he said no. So I reiterated that we are doing everything we need to do to stay healthy and spend as much time as possible with them.

It is a very soberring experience to have a talk like this with your kids. I still can’t wrap my head around the fact that I’m supposed to be seriously ill and not feel like it. What makes me sick was having this talk with my sons and the fear that everything might not be all right. I have full faith that I’m in this for the long haul, but I still have very clear memories of being 7 years old and not having a father anymore. I need a Scotch!!

The legal side of occupational diseases…

So the short  of it is, in 2007 Colorado passed a presumptive cancer law.

8-41-209.
Coverage for occupational diseases contracted by fire fighters.

1. Death, disability, or impairment of health of a fire fighter of any political subdivision who has completed five or more years of employment as a fire fighter, caused by cancer of the brain, skin, digestive system, hematological system, or genitourinary system and resulting from his or her employment as a fire fighter, shall be considered an occupational disease.
2. Any condition or impairment of health described in subsection (1) of this section:
1. Shall be presumed to result from a fire fighter’s employment if, at the time of becoming a fire fighter or thereafter, the fire fighter underwent a physical examination that failed to reveal substantial evidence of such condition or impairment of health that preexisted his or her employment as a fire fighter; and
2. Shall not be deemed to result from the fire fighter’s employment if the fire fighter’s employer or insurer shows by a preponderance of the medical evidence that such condition or impairment did not occur on the job.

So thats the legal mumbo jumbo. Easy definition is a firefighter is presumed to have gotten one of the 5 cancers on the job if-

1. They have had no cancer prior to 2007

2. Have been firefighter for a minimum of 5 years

3. Its one of the 5 approved cancer types

This is where it starts to get foggy. I have had no diagnoses of cancer. At the time of my hiring, I was cancer free and all of my work physicals have been clear. I’ve been employed with CRFD for 11 years and  was employed with BCFD for nearly 8 years and I have one of the 5 approved cancers. It should be as simple as filling out paperwork and signing off on it. This is not the case. Since the law is worded as a presumptive cancer it gives the worker comp group (in my case CIRSA) the right to investigate and review all my medical records. CIRSA then attempts to make a realistic link to my cancer other than my job as a firefighter and disprove the workers comp claim.

The history behind Colorado, and many other states, presumptive cancer laws for firefighters is based upon a few decades of research and 71 studies of firefighters and cancer. 17 of the 71 studies specifically focused on the link  and increased risk to firefighters. The National League of Cities hired Tri-data, a research company, to challenge these findings. There is no simple way to summarize what they’ve documented, but I read one legal column that compared the NLC document to the Tobacco companies claims that tobacco doesn’t cause cancer, it’s the smoking that caused the cancer.

In the study, they felt that the fact that all the studies didn’t study the same exact thing meant there was no validity to they’re findings. Ironically, I figured that if multiple studies found similar  findings that should add validity (apparently I’m not a politician trying to save $$$).

Next they actually ranked all the cancer according to how strong they’re associations are to risks and the job. Colorado’s law represents the diseases that have strong and moderate associations to the job. Melanoma is one of them.

So my legal battles have just begun. The good news is I have the support of the CPFF. If anyone ever wonders what our union dues go to, they’re paying all my lawyers fees and the expert witness fees (that start at $10,000). If it wasn’t for the support of the IAFF, CPFF and my fellow brother and sister in this family of firefighters, I would probably have no sign of hope for this battle.

Thanks.

The history of my current event….

After some talking with a friend who blogs regularly, I decided to restart my blog and chronicle my current situation. There were two compelling reasons for this: First, it’s therapeutic and second it provides me the opportunity to tell my story, from my perspective, in my own words, and it’ll be saved. So here it goes.

I have metastatic melanoma, and I’ll explain the roller coaster of the last month and a  half, in this post. The law is long and complicated so, I’ll outline the legal stuff  in a separate post. The short of it is that melanoma is classified as an occupational disease for firefighters, according to Colorado state law.

The roller coaster-

The wait line

Back in July, I had my regular annual physical, by my personal physician. Durning this visit, I asked my Dr. to remove a pesky mole from my right calf. This mole had been there for about 2 to 3 years and had been looked at by multiple Dr’s over the years. It never fit any of the atypical  mole  warning signs and it was never a concern. However, the months leading up to the physical the mole started to be problematic. I kept tearing it open when taking off my bunker pants at work. The repeated actions started to make the mole change in appearance, enough to make my chiropractor and acupuncturist comment on it.  I asked my Dr to remove it. She agreed with my thinking at the time, that the changes looked like necrotic tissue. It was removed and sent off for pathology. The end of the line, now time to get on the ride.

The roller coaster takes off -

A week later, my Dr. called and left me a message. I realized very quickly that something was different about this ride because, my Dr. never calls me with information, it’s always her nurse. When I called her back, I asked if it was melanoma. She asked how I knew and I told her that I just connected the dots about her calling.

The up hill climb-

My Dr. referred me to the melanoma clinic at University hospital. While I waited for the appointment to come around, I decided to read the pathology report and try to decipher it. I was able to figure out that I had a stage II melanoma, but I was unable to realize the fine details. When I met with the cutaneous oncologist, he informed me my melanoma was in a atypical spot for males and there were some serious findings on the pathology report. Further follow up was warranted, and I correctly staged my cancer. Dr. Gonzales was worried about the mitosis rate and the active regression the tumor showed. The mitosis rate was indicative that the tumor had a higher chance of metastasis and the regression rate made it hard to accurately size the tumor.

The ride-

The best course of action was to go in for surgery, remove a much larger area of tissue from the tumor site, and do a sentinel node biopsy. The  sentinel node biopsy involves injecting the tumor site with radioactive iodine and tracing it to a specific lymph node in the groin. The node is removed along with a little extra skin. The extra skin from the groin is used  to graph the large area of tissue removal in my calf. The calf area now sports an ice cream scoop sized divot, which I have now nicknamed Hermes the hole.

The big hill climb-

About a week after the surgery, the nurse called and informed me the lymph node was clear. I was very excited and stupid all at the same time- I asked for the pathology report again- idiot!!! I read the report and saw that the node was clear, but I also saw that I had a satellite tumor in the same area as the original tumor. This constitutes changing my stage to late stage III. Crap. So I decide that I’m just a minor league player in pathology report reading, and I’ll wait for the follow up appointment with the surgeon. (Dip in the hill climb). The surgeon said I misread the report, everything was fine. I was elated and we toasted champagne that night and took a deep breath. You know the one before the big downhill drop…..

The drop-

The next day I met with Dr. Gonzales, the oncologist, as a follow up to the surgery. (This is where I found out I can read a pathology report better than my surgeon and the 5th year med student). It took 2 doctors to inform me that I am “seriously” ill. What???? How can I be so seriously ill, but not feel it? We started to discuss my treatment options, which are limited since melanoma does not respond to chemo or radiation. So this is where we are in our journey/ride…for now.