After the Proton Beam Radiation treatment I quickly jumped back into things. It was about a month later, that I was on a gig playing my sax when I got this excruciating pain in my jaw. I had to stop playing my solo and I just held my jaw for a second and then it went away. It happened a few more times that night and would last a few seconds and then go away. The next day it happened some more and I noticed that my tongue was numb and tingling. Sharp face pains and a numb tongue make it difficult to play the saxophone in case any of you are wondering.
My wife and I headed back to the Proton Beam doctor to talk about these new symptoms. He listened intently and responded that he thought the radiation treatment was affecting my cranial nerves. Now if you have read “Part 10” of this story, you will remember that this was my one and only question that I had asked this doctor. “Could this radiation affect my cranial nerves?” Remember that? I was a bit bewildered by his analysis and reminded him that he had confidently told me that this would not happen. He replied that in a small amount of cases it can happen (You would think he would have mentioned this before when he told me it never affects the cranial nerves!). It was at this time that I started to believe that if a doctor told me that the prognosis was 99% good but there was a 1% chance it would be bad then I would fall into that 1%. I didn’t really have a strong faith in the percentages by this point. In my mind, if the bad thing had a greater than 0% chance of happening that was enough to include me.
The doctor prescribed a drug called Neurontin for me to help me with the face and jaw pain. Within a few days of starting this new drug, I started getting a rash on my chest and he took me off of that drug and decided to give me a drug called Tegretol instead. I started taking Tegretol daily and it really seemed to help. I wasn’t having the face pain as much and my face wasn’t tingling as much.
About three weeks into taking Tegretol, I came out of the shower one morning and my wife exclaimed “Holy Cow, Steve! Why is your chest so red?” I said I didn’t know why but it had been getting red over the past few days. By this point, my whole torso had a sunburned look to it. My wife, being a nurse, correctly diagnosed that I was having an allergic reaction to the Tegretol I was taking and told me I should call my doctor. I called the doctor and he said to stop taking the Tegretol ASAP. My wife headed out to work the overnight shift and I was home with my daughter who was sleeping. I knew nothing about allergic reactions or what they can entail so I got on the computer and did a search for “Tegretol” and “allergic reaction”. I found a whole bunch of interesting reading on the subject at first but the more I read the more alarmed I got.
Now the internet is an incredible tool. It can give you the right information to make the right decision or it can give you so much messed up information that you are scared out of your mind. Then there are those times that it can give you all the right information, scare you out of your mind and then lead you to the right decision. This was one of those latter times. As I was searching around the internet, I kept gravitating to the worst case stories. By this point in my path in life, I had come to assume I had the worst case scenario so that is what I was drawn to.
This is a benign banner in place of any graphic photos I could have posted for this disease. They are too disturbing to post but if you dare and can do a google search for the words above………
The two terms that kept coming up on the internet when searching for “Tegretol” and “allergic reaction” were Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson Syndrome (SJS). It might be just me, but having the words “toxic” and “necrolysis” (necro being the greek prefix for death) in the title of a condition is not a good sign! It basically can be translated “poisonous skin death” in everyday english. Basically, I learned that some people that have allergic reactions to Tegretol get this Toxic Epidermal Necrolysis.
Toxic Epidermal Necrolysis: The condition causes your skin to redden and peel similar to if you get a very very bad sunburn. This happens all over your body. Your skin then can separate from the lower layer and large sheets of skin slide off the entire body at pressure points (they call it sloughing) similar to a 3rd degree burn all over your body. Nails and eyebrows can fall off also. People with this condition go sterile, lose their eyesight, have multi-organ failure, pneumonia, pulmonary edema, and die (mortality may reach 50%)
If you want the full list of possible side effects you can go to this site and read about them. (Don’t do it on a full stomach) You can also do a google search for “Toxic Epidermal Necrolysis” and click on images to see the devastating affects this can have on a person.
As you can imagine, I was pretty anxious that this was what I had and I had a hard time sleeping that night. I started feeling hot and sick like I had a fever and when I took my temperature it was 102. I called my wife at work because my heart was racing like crazy and I now had a high temperature. She came home from work and she thought we should go to MGH Emergency room immediately because I was looking pretty rough. My 8 month pregnant wife and I woke up our 18 month old daughter and headed down to MGH at 4AM as a family. Fun family event!
When we arrived at the MGH Emergency Room. After waiting forever, we were finally seen and after some tests and blood work the doctor informed us that I was just having an allergic reaction to Tegretol. “Just go home and take some Benedryl and you should be fine” he told me.
Now, this is the point where I used my vast knowledge of medicine from the internet to impress the young doctor. “Could I possibly have Toxic Epidermal Necrolysis or Stevens-Johnson Syndrome?” I asked with my best “I know what I’m talking about” face. He looked at me with a look of admiration that you would only get from a peer who considers you his intellectual equal.
There was a brief moment where we locked eyes and he knew I would be a worthy adversary……….”Where did you hear about that?” he asked. “The internet” I responded proudly. At 4 AM this young doctor looked quite tired. He did his best to offer a polite smile, sighed, and told me that the chances were very low that I would have TENs or SJ Syndrome. He told me that I should go home, take Benedryl and rest (perhaps implying that I stay off the internet). If by chance the fever goes up again, then he suggested I come back the next day. When I got home, I took some Benadryl and went to bed. Everything was going to be OK I thought as I drifted off to sleep.
I woke up later that day sweating like crazy. My sheets were soaked. I got up to take my temperature and it was close to 103. As I looked in the mirror, I noticed my face was now beat red and everything was looking a bit swollen and puffy looking. I woke my wife up who had also been up all night and we went back to the hospital.
This time a good friend of mine also came with us. Now I have to say that this trip to the hospital was quite different than the 4AM trip we had made earlier. The place was hoppin’. There were doctors and nurses every where and we were seen pretty quickly. They didn’t play around this time. I mentioned my research into Toxic Epidermal Necrolysis straight off to the first doctor we met. It helped that my knowledgeable nurse wife was there who knew what she was talking about as opposed to me who had surfed the internet and was mis-pronouncing words like crazy………(I think I was telling the staff I thought I had Toxic Thermal Hydrolysis………..). I remember getting a whole bunch of tests but in the end they came back and said that yes, it looked like I had TENs (Toxic Epidermal Necrolysis). What were the chances?
A bunch of doctors came in and talked to me but basically they all said the same thing. All they could do was put an IV in, hydrate me, and wait to see how far this would progress. I mistakenly thought that just because I stopped the drug I would immediately get better but they told me that wasn’t the case. Once the symptoms started, all they could do was wait and see where it went and give me pain medication to help. Not very reassuring nor comforting…………
I stayed in the hospital and sent my wife home. She needed to pick up my one year old daughter and she needed sleep herself. I wasn’t sure where this was all going but to be honest I was reaching the end of my rope here. I started to have a range of feelings well up in me like anger, sadness and an incredible frustration. I felt like I was really starting to lose it!
I had mentioned earlier that I had a strong faith in God. Well at this particular moment, I felt like I had a lot of anger boiling up inside of me. Brain Tumor…….OK. Meningitis…….OK. Cancer……….Well, I’m not happy about it but OK. Return of brain tumor…………….OK AREADY!! Side affects from radiation……..GOSH DARNIT OOOOOOOKAY!!! Now, Toxic Epidermal Necrolysis that could end with my skin sliding off my body, organ failure and to top it all off death! I GIVE UP! AGHHHHHH!!!! I went to bed that night silently screaming! You have to wait until Part 12. for the next part…………Sorry!
Javi Schvindlerman says
Man, I don’t know the end of the story, but just looking at how you play I can just be proud of your strength. There’s a book on Job dilemas by a Rabbi called Harold Kushner (if I’m not wrong, my memory isn’t something to be proud of) that may ask you some more interesting questions if you want to take a look at it.
Anyway, thanks for sharing this… I’m also starting to miss your mouthpieces reviews…!
I think I’ve read that book before. That name sounds very familiar. I’m certain I’ve read something by him. You’re right, I have to get back on the mouthpiece reviews.
Sean Kelly says
Steve! You’re my hero, Man!!
Thanks Sean. The good part of it is that when I have days like today where a plumber has to come and take my floor apart to fix something and it will cost hundreds of dollars that I don’t have…………It really isn’t that big a deal in comparison!
I have no idea how you held it together through all this. I thought the story was over before the cancer. It just keeps going and going. You have incredible strength. You really should write a book, you have us all riveted to your story. It is mind blowing….
Joe Molinaro says
Damn Steve, don’t know if I can handle anymore but I will try!!!!!!!!!!!
I love horror movies but real life’s another matter.
LOL especially to your wife for standing with you and regards to dad.
Ken F. says
Steve, I have subscribed to your site from day one….in fact, at one point I sent you an e-mail telling you how much I enjoyed your lessons just because of your humility about your playing…not one to boast even though you are such a fabulous player and teacher.
Thanks for sharing your story with us…someday I hope I can meet you in person. You are an amazing individual to go through what you have been through and still have a sense of humor.
Maybe someday we can have a big get together and I can meet all you wonderful sax players that come to my site. Thanks for the support. Steve
Perhaps it is suggested in some of the comments made on this thread but it might be helpful at some point in this piece to hear from you what sustained you and what you’ve learned through all of this.
I was going to wait until the end to talk about all of that.