Grey Matters: 6 months of goins ons

So it has been quite a while since I have given a full blown update on the progress of this cancer and fungal thing.  Last I talked about at length I had just gotten out of the ER after a severe reaction to amphiterecin.  It was pretty much the last chance I had at an effective attack on the fungal pneumonia.  Well, a few days later I got a call that were going to give it another go but will a different compatibilizer prep called Ablecet. It took some good prep including steroids and benedryl to keep me from suffering another allergic shock to the system.  It was great one drug spinning me up in combination with another spiraling me down.  What a mind-fuque.  In any case, it worked.  It kept the anti-fungal from trying to kill em so it could do its job at killing the the fungus.  After a little more research I found that the mechanism employed to kill fungal cells is also the same mechanism used to kill animal cells.  So it was still trying to kill me but the hope is that it prefers to go after the fungal cells first.  Ain’t medicine grand.  So it worked and I was on it for about a week and a half before I had to take a little break.  I was going to Disney.  Not just for Disney but for the Dopey Challenge.  Doc Weiss voiced his concerns and we agreed there was nothing that was going to stop me so he said good luck.  I will get back to the Dopey in another post.  Let us just say, effing awesome.

I got back from Disney and was back for more Abelcet to finish this fungal infection off and get to work on this cancer bullshit.  Unfortunately, it went downhill again.  I made it about halfway through and started presenting a totally different set of symptoms as I went into anaphylaxis again.  This time they sent me into the hospital.  Unfortunately, it was through the ER.  I love the Jefferson hospital and for the most part each department has I have interacted with has been amazing.  The Emergency Department is not the only exception but one of the very few directly associated with the hospital.  I know ERs are busy especially in center city Philly but they treat most of their patients with disdain.  It is a get them in a room close the curtain and kind of forget till you can be discharged or moved away.  They have policies that can be down right counter to a patients well being and mostly because they a zero tolerance attitude toward things based on limited study and something near superstition.  They hate PICC lines and have tried pull mine on several occasions.  I finally to a doc that he had better hope they take him to another ER if he attempts to pull my PICC line because he would be doomed if they tried to treat him their after Space and I were through with him.  Well this time or perhaps it was the next time we pretty much got a rash of deaf, dumb and old fashion.  They wouldn’t touch my already accessed port so they hacked their way in with a IV line and for love of god they just won’t listen when I describe my veins for them.  So my fever spiked real bad for some reason I could not get some Tylenol to cut through it.  They said okay but just sort of forgot it.  Whiskey Tango Foxtrot!  To top it off we got a old battle axe of a nurse as third shift hit that again wasn’t listening and with an IV pump at the ready decided to gravity drip a bag of magnesium.  Give an effing break.  I was so glad to get out of there and do my best to get direct admitted from now on.

Okay so enough about the Jefferson ER, hopefully my brother and good friend Katie gets up to philly and knocks some heads around if she get a job at the Jeff ER.  Another rant is coming I am sure of it.  So I get past all of that and eventually I make it to the point that the fungal infection was down and under control so it was on to the chemo.  After some meeting of the minds it was decided that our attack would be Brentuximab.  What a beauty of a chemo.  First it was a single med so no string of combination drugs.  B: it was only half hour long infusion every three weeks.  And Pi, it had very few side effects.  Only one that took me by surprise because I was being dumb.  In any case, we knew it was not curative but made to reduce the tumor as much as possible before we go to transplant.  So here it goes.  After the second round I started feeling like I was getting rashy.  The skin on the arms and hands were feeling real odd though not that discolored.  It was messed up.  Then all of a sudden, the neuropathy in my feet was getting real bad to the point where I was having a real hard time getting to sleep.  Then it hit me.  My skin was not feeling weird without discoloration.  My fingers were no longer feeling anything.  The giant side effect of the Brentuximab was peripheral neuropathy.  It was like the dumb blonde joke that goes to the doctor and say that there is something wrong with her leg.  Every time she touches it, it hurts.  After the doctor examines her leg and finds nothing he asks her to touch her arm and she says ow. Then he tells her to touch forehead and she says ow and looks at him confused.  Then he says, “Your finger is broken, you dumb blonde.”

With all of that two (actually three but it comes later) more things land me in the hospital while I am working with Brentuximab.  The Flu and RSV (pretty much the common cold set in as a viral pneumonia.  So there I was beat down and having trouble breathing.  At one point walking downstairs to lay down required laying down and gasping for air like at the end of the “Epic” video. It was rough.  I remember texting my mother that I was in the hospital again because I couldn’t breath.  Not my best explanation because she panicked and Space had to explain it better for her.  During one of those stays they decided to do another bronchoscopy to try and clear some space in the tumor in the event that there was post obstructive pneumonia.  So as usual we let everybody know several times that twilight does not work and that I require general anesthesia.  We hear okay and had no idea that the new doc that came over from Temple was a giant cock and blew us off.  So no message was sent about the general anesthesia.  I know something was up when nobody came by for c0nsent and it was confirmed when no anesthesiologist is at the bronch suite.  So they put me under twilight and a few minutes in with tubes up my nose, down my throat and digging around in my lungs I am awake.  I am so glad I have some hard core self control and do my best to suppress the cough and fight out of the situation.  It sucked giant donkey dong.  So they bring me out of twilight and I am groggy and pissed.  That is nothing when I get back to my room and let Space know what happened.  Doc Sharma learned a valuable lesson that day or a least he better have.  Part of the lesson is that there is giant wall between Space my wife and patient advocate and Space the quality coordinator for the BMT group that works with Doc Sharma and rest of the group.  One requires patience and restraint when interacting with sophomoric docs and the other had no patience or constraint when dealing directly with ignorant, know it all “doctors”, with god complexes to the point that they don’t really have to listen to their patients because they aren’t doctors.  Mother effer, got the verbal smackdown.  I only hope that the residents in tow were there to learn the same lesson.  Eff nuts will listen and will comprehend that the patient know what if going on in their body and if that ain’t enough it is all over my chart.

Enough of that.  I get better and the breathing is much better.  As the treatments are going on the tumor is going down.  This is awesome.  The real rub is that I have not run in several months.  Not since mid January have I stomped out a single stride.  So it is late march and I realize I want to get back and I have the idea to train for a good 39 miler for my birthday weekend.  So I lace up and almost fall over in one stride because my legs are down and I have been walking in minimalist shoes only for months and now I am back in my Pearls with a nice heel 2 toe  drop.  I figure it out but things like any restart after a layoff it wasn’t pretty.  It was short but it was back.  I only get a couple of miles but it is a start.  So I keep at it but there is no real progress.  It is not that I could not get it done but the chemo was taking a toll and I was just plain tired.  Either way, the training kind of goes by the way side.  Then the awesome weirdness happens.  I am there getting some anti-fungal with another dose of chemo at the ready then Rescue Ninja Andrea comes over and says that the phosphate levels are critically low.  This a problem because it makes no sense.  When this happens other electrolytes shift as well to better indicate the actual problem.  Such as a raise in calcium would indicate one issue or a corresponding reduction in potassium would mean another problem.  But alas no.  those other values were steady.  So mystery.  Not only do I get admitted the already prepped chemo has to be thrown away.  What a waste.  My blood is drawn two more times that afternoon with the same results at different labs.  So it is deemed real.  Real weird.  They cannot give me phos because if the tumor is feeding off the phos then we don’t want to add more fertilizer to the crop.  Then at 2AM the phlebotomist comes and draws the standard couple of vials.  Later that morning the doc comes in and tells us that the phosphate levels are back to normal and they have no idea what the eff happened.  So I say let me out and they do.  I set a land speed record by getting in and out in 24 hours.  To this day we still have no idea.

A couple of weeks later, early May, I get another round of chemo and  a CT scan.  Things should be looking up with great timing.  Wrong.  The tumor has not only stopped responding to the chemo it has started growing again.  Mother fucker.  At this point the docs are actually starting to call it Duff disease.  It’s cool.  If the shit is going to kill me then at least I will have the joy of such a legacy.  My body is kind of going back down the slope with more tumor infiltration but new plans are being formed and we are on.  I realize my training is not progressing in time for my birthday run so I call it off.  But one thing is that I will not wake up in the hospital on my birthday so I do some bad things like hide a few fevers with cold water and some Tylenol.  The weekend before I decide how I want to spend my birthday.  With my girls in a cool hotel with some good food and in NYC.  I find a nice room near New Brunswick and we introduce the Psycho to Greek food which she loves.  We inhale the saganaki and I almost order another.  The psycho orders a pasta dish with the most perfectly cooked lamb shank and I get some amazing spanokopita.  The next day we make it to the Natural history museum and whirl wind through the dinosaur and other fossil exhibit.  It is real nice, especially when we see the mammoth and mastodon bones.  Then it is off to the theater for some Avenue Q.  Good show and very well done.  Some great catchy awful songs.  Kind of raunchy but in a purposeful way.  After a stop for another dog from cart we head over to some friends where I spiked a fever for about an hour and we hang out with some Thai take out.  Alot like the 38th birthday but great because I get to spend it with my family, my girls and do some cool new stuff.  I can only think of one other way to spend my birthday and that is running and even then I usually have the girls there with me.  I love it.  We get back very late and I have been 39 for about an hour it is good.  I get up a few hours later and take a nice walk to start to the next year and the rest of the day is dedicated to relaxing and napping.

So I stayed out of the hospital for my birthday so I give in and on Thursday I get admitted with a fever and after a week of tests and antibiotics they have no answers and pump me full of steroids to suppress the fevers because it probably the disease causing the fever.  I meet with Doc Neal and we start talking the plan for the transplant.  It is cool and we are currently looking at mid August for transplant but first we need new chemo to get the disease back under control.  The problem is the fevers are really not gone.  I have finished the steroids and they are coming back.

It was just this Wednesday and the day was bad.  I had been having quite a few more bad days than good days.  I am trying to get by but I know where this is leading.  It is leading right where I am.  I actually take my temperature and it is 100.5.  I know it is on its way up so I take some Tylenol and start getting ready to head to the hospital for my standard infusion.  By the time I get there the fever is breaking but I report it.  I am also having some difficutly breathing not like before but I am getting fatigued quickly and the chest hurts.  I asked to see the same day doc just to get the ball rolling and a few hours later I am situated in a nice hospital room getting comfortable and spiking another fever.  It hits over 103 and is a real bitch.  Here is the great part.  Doc Weiss is the attending on service so now I got him cornered so we can get the new chemo regiment worked out.  Which leads to just this moment.  It is decided that we will mitigate side effects like more damage to my lungs with a harsher chemo that the tumor will be responsive and we can get on with this transplant.  So I will be on R-Bendamustine. Here it is. Bendamustine.png Thanks Wikipedia for the structure.

It is a mustard derived alkylating agent.  It had the opportunity to damage my lungs but it has a better opportunity of attacking the disease.  The R is for rituxan which is a good oldy but good I have had before that will attack the Hodgkin’s side of the lymphoma and is relatively routine.  The chemo is approved and being queued up as I am typing this.  It will be a new adventure and yet another step in finding the cure to Duff’s Grey Zone Lymphoma.

One last thing to add was I had a pulmonary function test yesterday to see how my lungs are working and how the oxygen transfer from lungs to blood  is going.  I have about one and a half working lungs and that one and half lungs is transporting oxygen to the blood just fine.  It is awesome and I am itching to get out and run soon.  That and I owe a few race reports like Monster Mash Marathon and the Dopey Challenge.  So Eff Cancer.

 

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I Love You but I Never Want to See You Again

 

I may have talked about this before but I have this problem with all the people that have and are taking care of me throughout this effing cancer. It kind of got sparked by another blog and I definitely recommend it. My Childish Cancer Su (the blogger) is chronicling her cancer experience 8 years later. She had a unique experience being a late 20 something and being treated in a pediatric clinic. In any case let get this started.

I know I have talked about my rescue ninjas. Andrea has taken real good care of me with all things infusion. She has put up with my antics like making the meds list that they print out every time I come in for some poison into a paper airplane. I have had a couple bad reactions to the drugs the pumped into me yet she still keeps coming to my rescue. But it is not just her but the entire staff her at the Jefferson OIC. Maryann has been a blessing when I needed to get stuck for a blood draw. She know just where to go for a good pain-less stick. There are the same day docs that come by on a saturday afternoon and wag there stethoscope at me because I went running before the infusion and my labs show me as dehydrated and low on electrolytes. These guys at the OIC really care about me and making sure I survive all of this.

I cannot forget the big guy. Doc Weiss has been there trying to get me fixed up from the start. He has told me like it is and worked with me when it came to the nitty gritty of my care and my life. He doesn’t really understand my running but he does understand that it is part of my healing process. Rose has been there as my filter between Doc Weiss and me. She helps me with further communications outside of the clinic setting. She remains patient with me and my insanity. Though we disagree about tattoos it is a moot point since I have relapsed. Of course there are all the people that have kept me still standing while I was an inpatient. Tina yelling at me about eating will always stick with me. I could go on and on but I think I have made the point. There are some amazing people behind me throughout this experience. I love them dearly but…

… I never want to see them again. Well I want to get to that point where I never see them again. They feel the same way. Not just because I am a pain in the ass but because that is the goal. We all want to get this anti-fungal done and the infection gone. Then in due time starts the chemo. We have a plan in place for that. Then when we have killed the crap out of this cancer and I have gotten my left lung back then I will move on to the stem cell transplant. Again we have a plan in place for that as well. I know after that there will be follow ups and potentially more infusions of some poison. But we all want the end result.

That is me winning and getting back to my old life perhaps back in Tennessee or here or somewhere else. Who knows but in the end I want to exit to that elevator for the last time and never look back. I found this second family that I cherish with all my heart but I know they only for a little while and I will happily say goodby. The best/worst part is they feel the same way. What a effed up relationship. I wouldn’t want it any other way.

What a Day

Well, it all started last Thursday when I got the news of a fungal infection and a relapse. It couldn’t get much worse and I was handling things pretty well. There were plans going on that were to take this shit out. The meeting of the minds had occurred and those plans were set in motion.

First thing out the gate was the fungal infection. It may seem like the cancer would be a priority but that would be wrong. Here’s how it goes. The chemotherapy that would be treat the cancer would kill off my immune system and the fungal infection would kill me. Not a good thing. So we were going after it with some hardcore anti-fungal amphotericin. Look at that thing. It is a huge macrocycle fused with a six member ring 18 chiral centers a boat load of conjugation and an active primary amine. I mean just wow. It is no wonder it requires some insurance approval before I can get this.  Either way it was on the way.

In order to save my veins for the upcoming anti-fungal and chemotherapy I needed a new line in. Doc Weiss was not going to approve a PICC line and I did not really want another. PICC lines are nice and they really helped with the infusions. I was really missing it when I was getting stuck at least 4 times a week. But there was a port. A port would allow me to take a shower and even swim. So a call was put in for a port to get put in. I received a call on Friday scheduling for a port on 19 Dec. I already had an follow up appointment with Wiess that day but it was okay for a slight double booking. I got triple booked when the infusion center called and put me on for amphotericin at 1:30. Big trouble was coming and I was willing to take it on. I had to wait till Wednesday to get the call for when to show up for the port insertion. I got lucky and they said 0630.

So space and I got up a “O-I should have just stayed up” time and headed out for the hospital. Because anesthesia does not work on me they could not do this under what is called twilight. I would just be awake as they cut into me. So they have to put me under with general anesthesia. I used to have a problem with that but the alternative is a lot of screaming and I am sure we want to avoid that. In any case, we got there and they prepped me for the first case of the day. Perhaps I should explain a port. Lets start with a PICC line. It is a peripheral line that is inserted into the vein at the arm and the tube goes to just above the heart. It works real nice because it can deliver medicine right to the distribution center of the circulatory system. It can save veins from some real harsh meds. It can save veins from getting stuck to death. The PICC line has drawbacks as mentioned above. The Port is another way to deliver meds right above the heart. Instead it is inserted just below the skin on the chest. It really kind of reminds me of a GC inlet port. There is a resealable silicone inlet that can be pierced repeatedly. Just look at it. That is it with a needle stuck in it. But that thing is inserted just below the shoulder and a line goes from it to the vein for distribution just like in a GC to a column. It also kind of reminds me of a Harkonen heart plug from David Lynch’s Dune so I am a little freaked out by that.  So I got prepped and the anesthesiologist stuck me with their elephant tranquilizer and explained some things to me. I had no idea what was going on. He then said he was going to inject me with something to help me relax like having a couple of drinks. I asked him why he couldn’t just give me a couple of drinks instead. He just laughed and honestly the next thing I remember was waking up. I don’t know what was in those drinks but they worked. They had installed the heaters because my temp dropped down to 95ish. In anycase, I got busy with the waking up. I knew I was on a schedule. There was not time to extend the nap. So as I recovered and woke up as much as I could. I got dressed and they called Space with time for lunch.

It was awesome. We went to Pauli’s and I got a Stromboli of meat. It was a delight of sausage, peperoni, ham and cheese all wrapped into carby goodness. They told me upon discharge from the short procedure unit to eat light so I didn’t eat the last couple of bites but I tore into that thing like it might grow feet and run away. Those sausage, peperoni and ham animals sure do grow delicious. I even had a regular cherry coke to wash it down. What a breakfast of champions. Then I was off.

I felt that it would be good form to kind of cancel the appointment with Weiss. He would understand and actually prefer that I get the infusion over seeing him anyway. So asked the ladies to pass on the message as to where I was going to be. I went and checked in at the infusion center two floors down with about 15 minutes to spare. How awesome was that. Well, no good goes unpunished. I should have known I was doomed from the start. The phlebotomist calls me back and draws out 6 vials of blood which seems excessive but okay. As usual after a blood draw I go back for some coffee but on my way back the phebotomist stops me. He forgot the other 3 vials. Wiskey Tango Foxtrot. I had to get stuck again. I am sitting there looking at the bloody hand that the anesthesiologist gave me. The most recently my good vein what hit by the guy I was looking at. That one was tapped. So I show him my right arm and say this all I got and no more. Three vials later he is done. So I go back to the waiting room and wait.

This is what I hate about afternoon appointments. Every other appointment before me that runs behind adds up and now at 2:30 I am still waiting. It happens and it is not anybodies fault. I get back there and everything is going well. I knew this was going to take some time. I was sat back with fluids and my old friend micafungen. I was prepared. I had books, stuff to write with and I had my laptop. Now was the time. I sat back with earplugs in and was catching up on some Star Trek Voyager. I love Netflix. I got some tylenol and benadryl then I got hooks up with what could be best described as chicken soup broth. I was told it would be a two hour infusion. So I sat back with another episode of Voyager ready to go. The pump started beeping because of some air in the line. Nothing to worry about someone would be around to start the pump up soon.

Then it happened. It all came crashing down. My stomach got all turned around. I was going to throw up. I unplugged the laptop and put it to the side and started toward the trash can but quickly realized I was not going to make it. I looked over and reached for the call button. I snatched it and pushed it like I was on Jeopardy. I knew that sometimes this does not work very well I decided to call for some help to the nurse across the way who was helping another patient and had her back to me. Nothing really came out. My voice was gone. My head was going spinny and it was going down quick as new symptoms were coming. Then it was Andrea and the Rescue Ninjas all on top of me. The blood pressure cuff was on. Benadryl was passed over and injected into the IV stream. The fluids were placed and running. I saw my blood pressure come out as it was spiking at 183 over 90. My kidneys were hurting real bad. The nausea was subsiding but I was still spinning on the inside. Some other stuff was injected in the line but it was happening so fast. And then my chest started hurting. I told them and they asked me to describe it. I thought about it for a second and said it was like something was grabbing my chest and squeezing. I heard the doc “call 911 now.”  I was going through anaphylaxis.

This shit just got real.

I started feeling better. At some point during all of this I said to call Space and actually gave out the right number to call. She hurried out of a meeting and was there on the double. My kidney pain subsided and the chest pain was going away. My blood pressure was going down and my pulse was no longer racing. I was on oxygen which is always good. Rose was down there checking on my and Doc Weiss was there as well. It seems like they were on their way when the got the call. Then the paramedics from the Philadelphia Fire Department were there with a stretcher and asking questions. They were sending me to the emergency room. I asked if it had to be the the Jefferson Emergency Room and they begrudgingly said yes. I was actually able to walk, with a wobble, to the stretcher. Down I went and took the 1 ½ block ride to the emergency room.

They got me in and it was all good. I was fighting the benadryl which wanted my consciousness. I got all checked in and then the docs started asking the questions. I had a phebotomist or tech I was not sure try to give me a stick. I gave them the back of my hand because there was no way I was going to give them my good vein for an IV. I don’t know what it is but those ER jerks are afraid of intravenous catheters like gays are to vaginas. Like there are gnomes down there. They failed at the IV stick and the doc determined that I did not need a new blood draw so they gave up. They wanted to observe me for about four hours to make sure none of the symptoms came back. So I took a nap and let the benadryl win and Space read some.

Just before 9:00 they let me out and were off for home. What a mess. As I was getting checked out I figured with such a disaster at least this meant that Arsenal was going to win this weekend. You here me Gunners. Beat Chelsea. Beat Chelsea for me.  Besides, I am running out of anti-fungal options.

Special thanks to Wikipedia for the amphotericin structure and port picture.

A Tribute to Paul Field

This past Saturday I gave the mission moment at the Team practice.  Actually it was the last practice of the season.  I wish I could have done better justice to all that was Dr. Paul Field but this was a rambling of the great impression he made on me and a tribute the the amazing man I knew he was.  Those of you who knew him would most likely agree.

Paul Field

I want to talk about a Professor of mine at Virginia Tech. Paul Field. I met him in 1994 when he showed me how to solve the chemistry problems using programing in BASIC. For those of you that don’t know, BASIC is one of the original computing languages that we used way before the internet. In any case, Paul really stuck on us Freshmen that year. Especially with all the great characters we had in the chemistry department. For most Field was kind of a little antiquated and out there.

Really, he was the George Carlin of chemistry. His view on the universe and the science was distinct and he was totally dedicated to finding answers to those questions. Over the next 3 and a half years I had the pleasure 4 more classes with him. I actually got all grades from him, A-F. But during those hours and hours of education I started to understand true passion. I thought I was dedicated to chemistry and science and he managed to enhance that by orders of magnitude. It was the absolute astounding universe that wowed him and he shared that wonder with anyone that would sit back and listen. Even to those who wouldn’t listen.

He taught me to count in binary and that you could count to 1023 on my hands. His web site on the Tech chemistry site has how to count that way. A couple of years after I graduated I found it and e-mailed him asking why he was flicking everybody off when he got to 4. It was a rhetorical question. When I was a senior and thinking of graduate school I had asked him for a letter of recommendation and he agreed. A couple of days later he hunted me down in the lab and asked how on earth could he write a letter of recommendation when I failed his second semester physical chemistry class. I explained to him that I may have failed but I learned the more than I thought possible and that I failed his class is exactly why I thought he was perfect for writing a letter of recommendation. He thought about it and agreed… to the challenge.

I remember the arguments we had in the hallways and in his office about chemistry and nature. We were in disagreement about research. He was pure and I was applied. He taught me that the best part of science was the question, why? It is the why that we get to work on these great things from teflon to chemotherapy to plasma tvs and everything else.

It was shortly after the Rock ‘n Roll Half that I found out that Paul had passed. It hit me pretty hard. Perhaps it was interconnected web that is blood cancer or cancer itself. We all lived with the joking threat that the old chemistry hall was going to give us cancer but it was a joke. I any case, I am here talking about him. But I could never really do that subject real justice. In April he had lost his battle with leukemia after 2 years of fighting. I don’t have much more about the details and I don’t want to intrude on his family to find out. I am sure he fought it as hard as he could with more tenacity than I could muster.

I learned in the past couple of months that there was so much more to his life like writing, architecture and more why. I wish I had gotten a chance to stay connected over the past 10 years but he was never really far from my thoughts. This is for Paul and for the rest of us and we will fight.

Progressive Portraits

A Year in the Life of…

It was on a Wednesday when I got the call.  I remember setting up the call with Space.  I had just gotten back to Tennessee the Sunday before and was making my way back into work.  I was still coughing a bunch and really did not have a lot of energy.  Still I was excited because they finally knew what was wrong.  A year ago on a Wednesday on 13 June 2012 my life changed.  No it was the day my new life started.  It was a year ago today that I got my diagnosis.

Dr. Joanne explained that I had classical Hodgkin’s Lymphoma and I was assured that it was a beatable and I would be kicking it in the ass.  It was so weird.  I had cancer and I was not sure how to take it.  I was relieved because I knew what it was that was wrong with me.  That piece of mind was not enough.  I am not sure which order I told everybody.  I knew my mother and my co-workers were told.  I waited till the Psycho had her birthday before I told her and she took it real well.  I do know that it was 4 days later when I told the world.  In any case, everybody had my back.  One comment of note was “ I can not type the stream of obscenities that just left my mouth”  Thanks for the support Mellissa.

Well with the new life started as a future survivor things took many a different course.  A new diagnosis was the first course correction then learning how to live with constant fatigue was a new thing.  A really new thing.  I had run two marathons in two days and felt more energetic afterwards.  I ran in Reading, PA and Vermont and never felt this kind of fatigue.  Then it crashed when I failed my first chemo regiment and a transplant was in order.  I moved back to the Philly area got a new doctor and started the next course correction.  One course correction almost went off of cliff where I spent a month in the hospital.  My running days were on hold and thus went my sanity.

I lost weight.  I lost a lot of weight.  I was about 230lbs in August.  By January I was 170lbs.  I was eating a 5000 calorie a day diet and was still loosing weight.  I bottomed out at around 165 and started slowly moving up and now at about 195lbs.  If you want to lose weight cancer and chemotherapy may work.  But there are better ways and I must say a well balanced version of Atkins works real well.  Just ask my Space.

I started running again.  It was awesome and it was not.  Really it was awesome.  I was much slower and my endurance was not there.  I had a new body to learn.  I am still learning it.  The best part is I will now spend some time working my core and upper body.  No more of this flabby arms and bulging gut.  I actually fit into some jerseys that I thought I would never fit into.

Way back in July my hair started falling out.  Actually about 11 years ago it started but this time the decision was to just shave it.  5 days later my goatee started falling and it went to.  In October, the head was neglected and crazy hair and a full beard covered my head.  I was passing for a lunatic vagrant which is common place in center city Philadelphia.  It came to a head and I went back to bald in February.  Now I look a little like Ming the Merciless.

It is now a year later.  I have had some ups and some downs.  Now I am higher than I have ever been.  I got a “some kind of remission.” from Doc Weis which is great.  I still have some recovery and my memory is shit from the treatments.  But just as I said I would do, I no we kicked the shit out of this cancer.  What a year.  I cannot wait for the following years.

A Day in Doubt: I turn 38

Well, today I turn thirty-eight. 38 is not really not one of those milestones that most think about as important. I have described old as when you double your age and can’t really guarantee you will still be alive. I tended to think of that age as 40 or 45. So I am not old. This day does mean that 38 years ago my mother met for the first time after 52 hours of labor and no pain killers. So hats off to you mom. I was a pain then and have been ever since.

I have shared this day with some greats in the past. May 19th is the Birthday of:
Malcolm X
Andre the Giant
Grace Jones
Pete Townsend
Joey Ramone
Peter Mayhew
Ferdinand Magellan
Effing Machete himself Danny Trejo
Ho Chi Minh
Dusty Hill

Just to name a few. There is something about us Taurus cusps that makes us, well, us. It is such a great day and I was born on a Monday.

Before I go on with looking back at the years past I must say that year 37 has been a damn good year. Sometimes I think people question my sanity but I reject your reality and substitute my own.

In the past I had dreaded my birthday. I really did not want to get older and I had some crappy birthdays. It was just not something to celebrate. Things changed a little on that front. I celebrated my 32nd, 33rd and 34th with marathons. Cleveland, Cleveland and Delaware. They were awesome and with that I looked more forward to my day of birth.

On this day last year things were not looking up but they weren’t looking down. On this day, today, thing have changed. 365 days have been filled with so many ups and downs, goods and bads, surprises and disappointments that we weren’t able to plan for anything outside of a couple of days ahead. All you have to do is look back at what I had written but I will try to sum it up because I am just that kind of cool guy.

Last year at this time we had already determined that I did not have Lung Cancer. Just before that we thought it was and that virtually a death sentence. I knew there would have to be some serious overtime to see today. We still didn’t know what it was and another biopsy procedure was on the way. Also, Space was furious with me by that point because I was being an asshole. It is true I can sometimes be unpleasant and bull-headed. But I am a Taurus. A couple of tests later I finally got the answer as to what was wrong with my lungs. It was the weirdest good news I have ever got. I had cancer and that was good because it was Hodgkin’s Lymphoma the easy cancer with the light chemo. Then it turned the good bad news to just bad news. It as not Hodgkin’s but a mix of Hodgkin’s and Non-Hodgkin’s lymphoma called Grey Zone Lymphoma. This is a 1 in a Million case. I was Six Sigma!

Still I had a great Doc and the plan was still for me to kick the shit out of it. So my 38th year was going to be just fine. I was wrong of course. Chemo happened and it kind of sucked but really it was for the greater good. I knew this world could not make it without me and to top it off I still needed to see Breaking Dawn part II. When I just knew it was going to nothing but good news the bomb dropped and I had failed the chemo treatment and things looked worse than before. The battle was lost but the wars was still going my way. A harsher chemo and a transplant was in order. I started the harsher chemo and it kicked me in the ass so hard I was sneezing shoe strings. That was the first does.

Afterwards, the second dose of the harsher chemo came and everything went so far south that I fell out of the ecliptic. I got sick both in mind and body. Really, I think I went sane but people were possibly questioning my sanity. But my body was shutting down and I was orbiting that drain. It was so dark a time that I had given some serious thought to giving up. Perhaps for 30 seconds. Most it in a row. This is where thirty-eight was started to be a question.

The real shit hitting the fan came from my doctors mouth. Space and I were getting a little twitchy about making trips everyday to get infusions and some other stuff that we were unsure of. At the time, I was in real bad shape but we were totally ignorant of the situation. In the discussion with Doc Weis, we asked if I was going to be around to see the Psycho’s next swim season. He told us it was very unlikely. What a Mortal Kombat Fatality. 38 was looking like a pipe dream. We understood just how bad it looked. We had seen the PET scan and I was still a christmas tree and my lungs were in dire straits.

Good News!!!!!! The stuff that lit up in the PET scan was biopsied and turned out not to be cancerous. It was some form of vasculitus which is still serious. To top it off what was left in my lung was not growing and may have even been getting smaller. We were now on the path. I was getting stronger and starting to do stuff on my own. I was driving again and I was only having to go in for infusions 5 times a week. The better half of my brain had just visited and it was a blast. How long could all last.

104.5! No it was not the crappy radio station in philly that plays that emo stuff. That was my temperature when we visiting in Delaware. We booked it to the hospital and I had a playlist of high temps over the next 10 days. I felt fine and it was my most pleasant stay. They could find nothing that was causing the fevers and finally Doc Weis realized that a high temperature was not enough of a reason to keep me jailed up. That was two months ago.

A couple of weeks later it started to hit me. I was going to make it. We asked Weis about the outlook and he said it was much better. We asked about remission and he was willing to concede partial remission. The pills were going down easier. I have even started running again. Hells bells, I had signed up for two marathons including Disney’s Dopey Challenge.

Again I must reiterate, the 37th year has been and adventure and a blast. So here we are, it’s my Birthday and damn if I am not going to celebrate. No marathon this time. I wish I could but my body is still recovering. Instead I will be spending my day in NYC with my girls. Rae or I will tell you all about when it is all done. Then it is on to 39 or the first anniversary of my 38th birthday. I am not sure which one yet. I am sure that I may grow old but I will never grow up.  Besides, Its not the years left in your life but the life left in your years that count.