Is it just running or running away?

I run because I need to  run, I want to run, I need to run….so I run.

2 weeks ago I was able to return to week and  being able to work out. One of the other difficult things, over the last  3 months, has been not being able to work out or  do any physical activity at all. Starting with my first surgery, I was limited to minimal walking (of course that was not really walking but hobbling the first day or so). But as I healed, I was able to do a little more walking. I think I was able to work up to a 1/4 mile or so before my second surgery. After my second surgery I was hobbled. I spent the first week dragging my leg around because it didn’t work right. I now have a greater appreciation as the function of skin and how it ties in with the workings of muscles. After 2 weeks I was able to walk more. It was a full 6 weeks before I was cleared to consider running and exercising. This came with limitations though. If I do any strenuous walking/hiking or running I have to wear a compression bandage over the 3″ hole in my leg. The purpose of this is to reduce the chance of having my skin graph slough off. One might ask why didn’t I go swimming. Well long exposure to moisture/water can also cause the skin graph to come off. In fact I can’t go swimming for a few more months. So what am I running away from…nothing really.

When I run I am able to let my mind wander, to think about certain things in detail, to meditate and yes even pray (my definition of prayer is simple… I talk with who ever is listening). I have found during times in my life that I am more grounded and centered when I am able to run. It makes me feels centered and balanced. Not having  this ability took a greater tole on me than I thought it could. Then you add sitting behind a desk and I thought I was going to  loose my mind. I dived into work around the house, even when I should have been sitting with my leg up ( On Thanksgiving I just couldn’t sit and let everyone wait on me). Needless to say, it didn’t work. I was starving for the ability to run away. That opportunity to leave what bothers you, the ability to think in detail about it or even to meditate and ask why and why not .  Then it happened.

2 weeks ago I was cleared to return to work and do physical activity. I jumped in with two feet and “fell”. I was caught off guard how much stamina I had lost in just 3 months. So I just started walking and walking and walking. It quickly to turned to hour-long walks on the tread mill that I added increasing incline. With each step I felt better, like I was moving away from the troubles of the last 3 months, or was I really moving away from it. I was able to think in detail and be with myself. I also had some increased motivation. Sitting on my ass for three months caused a 25# weight gain. So I also decided to use this new drive to meditate to also usher in a new change in life style.

Since I can’t go thru treatment I have shifted my focus to improve my own immunity and go towards a reduced cancer diet. This entails going vegan and dry ( i.e. no alcohol). Yeah ……NOT!!!!. Ok we have made the shift towards a more vegan diet and I have greatly cut back on my other alcohols (red wine is ok due to the health benefits). We have also cut a lot of the processed sugars from our diet also. So when I run I think of new and creative ways of including more veggies into our already veggie rich meals. Things like butternut squash cubes baked with cinnamon, garlic olive oil and green chile happen when I run.

So I keep moving with vigor and gusto. It balances me. I believe it moves me further away from this thing that has now forever changed our lives. So I run.

The not so clinical trial…

So after spending months of surgeries and being Don Quixote  with my insurance I won’t be going thru treatment. Needless to say I have mixed emotions about this. But first the reasons why. So I did all the preliminary work, multiple lab tests ( 30 vials of blood btw) and CT’s/MRI’s to see if I qualify. Apparently I was disqualified because of a preexisting condition that I have. It’s call Sarcoidosis. Here’s the Wikipedia definition

Sarcoidosis (from sarc meaning flesh, -oid, like, and -osis, diseased or abnormal condition), also called sarcoid, Besnier-Boeck disease or Besnier-Boeck-Schaumann disease, is a disease in which abnormal collections of chronic inflammatory cells (granulomas) form as nodules in multiple organs.^[1] The cause of sarcoidosis is unknown. Granulomas most often appear in the lungs or the lymph nodes, but virtually any organ can be affected. Normally the onset is gradual. Sarcoidosis may be asymptomatic or chronic. It commonly improves or clears up spontaneously. More than 2/3 of people with lung sarcoidosis have no symptoms after 9 years. About 50% have relapses. About 10% develop serious disability. Lung scarring or infection may lead to respiratory failure and death.^[1] Chronic patients may deal with waxing and waning symptoms over many years.^[2]

I was told I had this a few years ago after it was discovered during a routine physical that included a Calcium score CT scan for work. After repeated CT scans, a bronchoscopy with needle biopsy doctors diagnosed sarcoidosis and told me I was asymptomatic. I’ve spent the last 2 years monitoring it with a pulmonologist. It was determined late this summer that the nodules and lymphoedema were stable and would only require occasional monitoring. That’s when melanoma stepped thru the door.

My Oncologists stated that he was trying to get me into the study so I could possible take a newer drug that did not appear to have issues with sarcoidosis. The problem is that it eliminated me from the trial. That leaves the standard drug therapy Interferon. PROBLEM!!!! Apparently Interferon can cause Sarcoidosis to become active and inflammatory, sometimes with fatal results. In most cases the symptoms partial resolve themselves when treatment is stopped. This presented multiple problems. The likelihood of being on Interferon long enough to benefit is extremely unlikely and the possible side effects greatly out way the benefits. Basically I am asymptomatic on both disease fronts and it would be best to remain that way. The hope is that the surgeries did their job and all the cancer is gone. The purpose of the treatments were to give me the absolute best possibility. So for now I have returned to the semiannual exams by the oncologist and dermatologists.

Talk about a mixed bag of worms…..time to go fishing!! I am glad that I no longer have to fear what the next year held for me and my family. I’m healthy and will try to stay that way. Thanks.

A bumpy road called health insurance…

       This road for the clinical trial has been bumpy to say the least.  I haven’t even started down the path of the trail and I need a new suspension already…..due to my “wonderful” insurance. It started about 7 weeks ago when I first called my insurance and asked if they covered clinical trails. The 1-800- number answer was a very emphatic NO!!!!!!. The following week I was speaking with our Town’s HR representative about getting a care champion assigned to my case so I could weave my way through the bills easier. I told her what had happened and she said she would look into it. Her answer from her contact was that our insurance will cover clinical trials, but there are very specific parameters. Oh joy.

      The next week I was assigned my care champion and I asked what information they needed to approved a Phase III clinical trial.Ironically she said nothing except the Dr. to call and establish a medical need. That was a sign of relief…..slightly premature however. This is when I started  the very bumpy and curvy road of health insurance hell. My Dr. submitted the request, easy enough right. NOT. Then the insurance said they needed to know which of the 2 medications I was going to go on. It was explained to them that I had to have a full work up done to qualify me for the trial. Then and only then could they assign me a drug. The problem was, once I get randomized I have to start the drug within 2 to 5 days. Not enough time for prior authorization. So then they needed information on the clinical trial. This started the  phone call and fax sending  barrage which resulted in me receiving a letter saying they were denying the preliminary test to enter the trial. What the hell!!!! The trial should be fairly straight forward for the insurance company. Arm “A” is the standard treatment for stage III melanoma. Arm “B” is the trial drug and would be significantly cheaper than arm “A” . This is because the trial pays for the drug, which $90,000 a dose and there is only 8 IV treatments throughout the year. Arm “A” has 20+ IV treatments and 3x/week subcutaneous injections for 11 months. If should be a simple decision of math. Either they end up paying the standard treatment or save money. I am now convinced that the insurance industry is made up of a bunch of politicians who can’t think their way out of a bucket.

      So I spent the last two weeks trying to figure out how to get this resolved. Apparently no one in the insurance world can talk to each other or enter anything in a computer file. It finally came to a head when I was speaking to an individual who said they didn’t have any record of a clinical trial request and my Dr was told my plan doesn’t approve clinical trials. This is where we lose our suspension and I blew my top. I proceeded to call the appeals line and explain to them I have the documentation showing that my plan does approve clinical trials and  copies of all the faxes that were sent to them of information they needed.

      There goes the rug under my feet!! The person on the other end of the phone line stated that my denial went to a peer review ( something that was not noted in the denial letter) and it was approved ( at least the Ct’s, MRI’s and blood work). I was speechless….( insert your comment here about how hard that is to believe). I quickly got the approval number so I could reference it in the future. Needless to say I am amazed at lack of communication that exists in the insurance world. I really felt I needed Matt Damon and Danny Devito from “The Rainmaker” for a while.  I’m glad at least portion of the trip is done and that the suspension has been replaced. Lets hope for a smoother ride.

The emotional thrill ride…

      Our Christmas was a good one, but filled with additional emotions not usually associated with the holidays. I posted the other day about Stephen and Fred asking if I was going to still be a Fire Fighter. Their questions continue and are good ones too. They also seem to be working through their emotions….ie they definitely have more now and are learning to express and discuss them. They are keenly aware that treatments will be starting soon. They like me coming home every night too. If you missed it, I have been working in the office since my last surgery 5 weeks ago. With any luck I’ll get cleared to return to work next week. The only issue is that I should be starting my  treatments next week and may need to be off additional time. Of course I won’t know which treatment I’ll be on till a few days before it starts. This added stress is become palpable in our house. My nerves/anxiety are edgy ( mainly because I’m actually going to be sick as a result of Hermes). Lynese has been a trooper but this mess it taking its toll on her too.

     On Christmas Eve we all went ice skating on a local pond in the mountains. It was a beautiful day in the hills. Cold an sunny..perfect for Norman Rockwell like day on the ice. Afterwards we stopped at a local pizza joint and enjoyed a somewhat well behave lunch with the kids. Later that evening Lynese confessed that these fun trips and family outings are hard. She has been enjoying them but can’t shake the thought that she might have  to this without me some day…or worse is the last time we get to do it together. What are you supposed to say to this. I gave her a big hug and  reassured her that I’m going to do what is necessary to stick around. I was very impressed with her courage to express such a  deep and hard emotion. We all realize that we might lose our spouse some day but to actually face the possibility is a whole different animal. We have been trying to communicate and talk about how we feel to better prepare ourselves. I believe this communication  we have will better prepare us for my treatments and allow me to draw on her strength. I’m trying to be a proponent of living in the present, remembering the past and face the future with strength and optimism.

In closing I really want to make it publicly clear that I am greatly honored to be call Lynese’s husband and to call her my best friend. So far she has exhibited a huge amount of strength in these trying times and I appreciate her being involved in this journey.

Luv u bx3 Boo

Are you still going to be a fire fighter dad?

     This weekend Stephen and Freddy attended their CLIMB class at the hospital ( that was like pulling teeth at first). Both were anxious, angry, upset and generally miserable before they went. We dropped them off and they spent the next few hours learning about cancer and its many treatments. They got a tour of the infusion center and learned about IV’s and other medication delivery systems. They spent a good deal of time learning how to talk. ( That’s odd, they’re related to me, they should know how to talk) They made their “strong” boxes. In these boxes they put things that frighten them and those thing that make them strong. By the time we picked them up they were having lots of fun. They even stated that they wanted to come back.

     Later that night Stephen posed one of the toughest questions he’s ever asked me. When I was putting him to bed he asked if I was going to still be a fire fighter. I asked why and he stated because that’s why I am sick and going to go through treatment.  Ouch!!! I tried to explain to him that I was going to make changes to what I do and how I clean things to give myself the best chance but I am a fire fighter. I told him I wasn’t going to do anything that is going to make myself sicker. He still seemed worried. It’s a sad time in your life when you can’t fully reassure your kids.

     Then on Sunday, Freddy was helping me cook dinner. Out of the blue he asked if I was going to still wear my boots at work? I realized he has the same fear that Stephen did. I did my best to reassure him that I was going to do everything possible to keep myself same. He told me he doesn’t want me to wear by boots anymore because that’s what made me sick.

Well, the class succeeded in helping my kids communicate but at a heavy cost to my heart-strings.

Life behind the desk…..

     Well I met with the surgeon the other day during my follow-up and we had a candid conversation. Candid because he did not understand what I do for a living and the fact that he is a warm as a fish( with a bow tie none the less). He was ready to clear me to return to work.  I then asked a few questions about skin graft care that I found: ie not over exerting the area, not allowing the area to get stretched, not allowing it to get rubbed or be kept wet/moist for extended periods. You know, all the things that are probable when running a fire truck at a fire or emergency, the typical everyday stuff. That was when the light bulb in his head became less dim. He stated I should give the area at least 3 more weeks to heal.

CRAP!!!

     There I was, ready to return to driving a truck and not a desk. But…NO…I had to go and open my big mouth. Shocking. So I had to return to driving a desk instead. Answering phones, filing training requests and other assorted blah blah. It’s not all bad, in the sense that I am not burning through sick leave. My Battalion Chief has already told me that he is going to schedule an intervention when I return to work to get my head back into the game and prepare me for my station mom life again.

     In all seriousness the office time hasn’t been bad. It mostly easy work and they are very willing to work with me and my many Dr appointments. In fact, I am very grateful for the opportunity that my department gives us to do light duty. The only problem is me. My alleged ADD makes sitting at a desk hard, not to mention that my leg makes it difficult to even wear boots.  I guess I should get used to the idea of office life for the interim, the sking graft recovery program is as slow as a republican debate!!!

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.