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.

 

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.

Race Report: Rock n Roll Philly Half (part 2)

 

We surged into a jog, crossed the timing mat and …

… we were off. Of course I hit the start on my runkeeper app. I was not the last to the start line but it was damn close. I remembered this from before. The start line was very similar to that of the Philly Marathon. I headed down the Benjamin Franklin Parkway. With all the flags and stuff. It is real cool seeing the flags of the country then going by the Franklin Institute Science Museum. Because I was the back end of the start I had a lot of elbow room and that was cool. I was just trying hard not to get swept up in the start and go out to fast. That did not work as planned but it never does.

About a mile in I looked up and realized I had the whole fricking street to myself. You could see only runners on the road and that was it. It was awesome. I am so glad that cities are able to clear things out for events like this. It really encourages people to get off their ass and try something. At one point I was heading toward city hall and I saw my friend Donna up ahead of me. We had run together on many occasion in our training sessions with team. I figured I would try to catch up and run with her if I could. If was not soon after I picked up my pace to catch up that I realized that she may be out of my range. I decided to try a good surge to catch up and hope that it would not drain me. It was a risk because I was pretty set on just steady pace running with very little speed work. I caught up and it was real cool.

I must say, that with all the wonderful organization that the Rock n Roll series has, there was one thing that was lacking that would have been a real help. Clocks. It would have been nice to get some splits to work with. At least at the 5k, 10k and 15k mark. Instead there was really none. Sure I could have pulled my phone out and checked the Runkeeper App and eventually I did but it used to be pretty common to have a few timer clocks on the course of the big race like this. So there Donna and I were moving along the course. At one point, while on Market St., we passed by the block that Jefferson Hospital was on. I realized the irony that I would be there in just a few hours getting hooked up for some more anti-fungals. Still we moved on enjoying the city in this unique perspective.

Now my new pace has made for some certain changes that didn’t used to happen way back in the day. One is that I now carry water with me. I used to detest carrying bottles as much as I could but these days I have found a good belt that feels comfortable and works. No dehydrating for me. The other big changes is that pit stops are becoming a little more normal. It is not that I never had to stop at the plastic box before during a run but a new body is giving me new conditions to work with. So on my way back down the Benjamin Franklin Parkway I had to make a quick stop. At that point, I did check my Runkeeper App and it showed we were going fast. I had done it. I got swept up in the excitement and went out too fast. I felt good so maybe it would not be so bad. Things were actually going well. The bladder was now empty and I was still feeling okay. Then came the down hill.

We reached the Art Museum and went down into the Kelly Dr. Most people hate uphills and love downhills but I am opposite. I thrive on uphills because they are the challenge that gets me rocking. Sure they may kick my ass but I still like them. I can kind of put the legs into low gear to get up them. Downhills on the other hand are the Batman to my Joker. I just don’t have enough leg strength and control to go all out on them. So there is me putting on the brakes all the way down the hill. It is just a lot of stress in places that are not usually stressed. Sometimes I think I psyche myself out with them but still the suck. So I started down Kelly Dr with a small suckfest of downhill. It really wasn’t that bad but I could have done without it. The good part was Space found me and ran along side for about a quarter mile. It was fun.

I was at the base of the little hill that something very odd happened. I have had trouble with neuropathy in my feet where there is some numbness and pain. For the most part I had never felt the neuropathy while running. It is a type of euphoria that gets rid of the everyday pains. But with about 7 miles to go the my toes started to sting. The thing I was wondering if this would happen during some of my training but it did not so I figured it would not come up. After about a mile I was able to tune most of it out and it really did not affect my stride to much. So on I went with my teammate Donna running along with me.

So the course was going around Fairmount park by the river. I knew this course. I have run around it so many times I have lost count. It is relatively flat and quite honestly a pleasant place to run. It was relatively well shaded but the sun was coming up. Because of the foot issue and that fact that I had gotten off to a fast start I was starting to fade. The worst part about knowing the course so well is that you know just how long you have to go. In any case, a question came up that needed an answer.

Where is the effing bridge. We had to get to the Falls Bridge to cross over the river and head back to the finish line. Well, the thing is that no matter how many times I have run there I never can figure out which turn that effing bridge is after. Donna and I were really starting to help each other through each mile but our new mantra was becoming, where is that effing bridge. It was becoming kind of a comedy of errors. I would swear that it was right around next corner but I was wrong. My mind was totally effed with on that. The good news was I was right the last time I predicted it was around the last turn. The relief I felt when I saw that beautiful white painted steel. It was across it and 4 more miles to the finish.

What a tough 4 miles. My legs were turning to lead and of course the 4 miles back started with a downhill. So my thighs started burning as I put on the brakes for another quarter mile. It was quickly becoming a death march. I started to use some of the old tricks I had in the past. I started picking out signs and objects to make them little goals. It works real good. I know I will get to the finish but minor victories were the game. It was pure slug mode. Donna kept pushing me along as the miles went on by. It was weird we started noticing these signs for medical mile posts. There were more and more as we kept getting closer to the finish line. At first there was one a mile but by the time we were a mile from the finish they were like every 100 yards. What the hell. We people dropping off faster than the finish line could come.

It was about mile 11 when we saw Maria. One of our great TnT coaches. It was great. I was pretty well tapped and any encouragement that could come my way was greatly appreciated. We turned a corner and passed a mile marker and the rest of the Team coaching staff was right there with us. So much awesome to keep me going. That last mile was long but it was well shortened up by the help from those angels in green shirts.

Then there it was. We were just at the 13 mile marker. The finish line was in sight and the photographers were there for those wonderful finish line moments. Donna was still there with me so we locked hands and finished together. It was amazing. I was back. After all that shit with the cancer and losing my legs. I was back. And I had my good friend Donna their to share it with. Cancer be damned even though I later found out I had relapsed it didn’t matter. What an amazing experience with new friends and the family there as well. This is just the restart and I am on a roll. Just wait till next month with the Monster Mash Marathon. It’s on like Donkey Kong.

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.

Daily Double

 

On 1 October 2013 I would have celebrated one year cancer free. What an amazing thing. One down and four more to go. I had to hold off on that celebration as some things got worked out. It was tough at times because I really wanted to scream at the top of my lungs that I had kicked the shit out of this thing or something. Instead, I kind of stayed silent. I was with a group of friends after a run having a beer when it came to me and I jotted this down quickly so I could share.

 

“Sitting here around people with the knowledge I have. Not telling them is like living with a shame. I won’t pretend to know what it is like for a rape victim but I think I feel some of that. It is odd, these people (the Team) may be the best to handle this but I am still silent. Maybe it is still because there is some uncertainty as to what it is. At least there is some hope.”

 

I am sorry I could not tell you guys but I was sure glad to be there with you. I had a lot of fun and shortly after I wrote that my spirits lifted. Beer, pizza and the Team really helps. So it daily double of a nasty fungal infection and cancer relapse. So this is sort of how it went down.

 

It was going so well. It was July and I was feeling great. I was running quite a bit and things were progressing. I had been off of any juice for two months and we were all considering plans for the future. The stem cell transplant was off the table and we were looking at a stem cell collection so we would be ready in case. But that was where it went all wrong. I had an appointment with Doc Weiss after a CT scan and he dropped the boom on me. My left lung was showing something.

 

We talked and it was probably a fungal infection so I went back on the micafungen. I had my PICC line taken out two months prior so that meant I was going to get stuck. I really hoped that my veins had recovered from the abuse a year ago. I had false hopes. Andrea had a fun time trying to find a good stick spot. After several trials I gave up and let her take the back of my hand. Honestly it was not that bad. It hurt going in but afterward I had quite a bit of mobility.

 

Now I was a real bastard at times. I was running on Saturdays prior to coming in for an infusion. Therefore, I was quite dehydrated and my veins were even more uncooperative. My rescue ninjas were frustrated till I just decided to give up my one good vein each Saturday. There was also this new system at the infusion center that printed out my meds list every time I came in. That list is a couple of pages long with a cover sheet. I was really pissed at the waste and tried to opt out of it. Eventually I got back at them by reusing the paper.

I should have been an aeronautical engineer. They enjoyed the entertainment or at least they pretended like they did. It was weird as I started to see the staff there and talk with them. They were surprised to see me and we discussed how it is weird. You get to know these people and become quite friendly with them but deep down they hope for the best. That is you get better and they never see you again. I feel the same way. Though I had gone there on occasion and stolen coffee it was not the same.

 

During the first couple of weeks on the micafungen I was collected for stem cells. This is a most unpleasant process. They inject growth factor to have your bone marrow make more stem cells and then they put this catheter in your neck. The bone pain from the growth factor was not fun. I had rough long run during that and it was not my worst run but it was in my top 50. It is weird because in order to get the stem cells they have to literally pump all of your blood out of you and filter it and pump it back in. Honestly, it was not that hard. I slept during the process and after one day of collection I was done.

 

After about a month I had another CT scan and no it was not done. This was okay. Fungal infections like this take a while to respond to the medication and the spectrometric measurements always lag behind. I was cool as a cucumber. I was on top of my game. My training was going great and the Rock n Roll Philadelphia Half Marathon was coming up quick. Check out the race report. It rocked and I was amazing with the help of the Team. I was working on top of the world. Doc Weiss did want me to get a consult from Doc Evans about a surgical biopsy. What a mistake that was. I like Doc Evans but he wanted to take a lobe of lung out. Whiskey Tango Foxtrot! I only have five of those and I know that we were looking at a biopsy of some of the more damaged lung parts but come on. Space and I were not pleased. I got over it quick because why not. On a side note, Doc Weiss took me off of cyclosporin which is a immunosuppresent to see if my on immune system would kick in and help with this infection.

 

So it was on like Donkey Kong and I had a CT and PET scan in October. I wasn’t worried. The worst part is moving your arms after the PET scan. You spend about 45 minutes with them up over your head while not moving. Well, as you might guess it was not only bad but it was getting worse. The PET scan showed a couple of spots that glowed like a 1000 watt bulb. We were entered in to full biopsy mode. One problem though I was still feeling great. I was ramping up my mileage and the Monster Mash Marathon was coming up real soon. I was on such a role there was no way I was missing that.

 

Doc Weiss said it was time to go on with that surgery and we put the slam down on him. Really we just opened up a new possibility with Dr. Hehn better know as Boyd. He was the pulminologist that has been in my lungs the most and most recently. Space and I wanted get his input about it prior to the cutters getting all up in me. Weiss agreed and we met with Doc Evans and Boyd on the same day. Actually, Doc Evans had already consulted with Boyd and agreed to a bronchoscopy as a first step. I was in.

 

First thing was first. Boyd wanted to see what my lung function was before any surgery. So up to nuclear medicine and they injected me with technetium. When I asked me what it was that I was injected with they told me and told them it is the lowest weight element without a stable isotope. The doctor learned something new that day. I love chemistry. It has maintained such a wide open universe for me. As it turns out my left lung is crap. Over 75% of my lung function comes from my right lung. Well at least some part of me is conservative. Before the bronchoscopy I went and ran the Monster Mash Marathon. It was awesome. I cannot wait to get to that race report. Two days later Boyd asked me how the race went before he had me knocked out and lung scoped. Long story short. The results were inconclusive. So off to surgery.

 

At this point it was the end of November and thanksgiving was upon us but best of all Doc Evans was going for a new approach. He was going after a lymph node adjacent to my left lung and a wedge cut out from the upper left lobe where there was some good glow. I went in for the surgery and had to wait and wait and wait. I could not eat so I was getting real cranky. Naps were helping but not enough. I was taken from the pre-op room to the operating room area. There a couple of docs came and talked to me and explained to me what was going on. An anesthesiologist came by and put two elephant tranquilizer needles in the back of my hand and my wrist. He was talking more about the procedure and mentioned that they would probably use the robot for the surgery. I immediately asked if it was Three Laws Safe but all I got back was a puzzled look. What a shame. I am surprised I made it out of there alive.

 

I woke up with two chest tubes in my side and a foley catheter in. It was not a very happy time. Always avoid a foley catheter and chest tubes are a bad idea. Taking each of them out is beyond description. Needless to say it hurt. The good news is they gave me happy button for the pain. It was fun but it made me itch. After two days of observation I was out of the hospital and getting hungry for Thanksgiving. I tried to be patient and waited an entire week before calling for results. They were not in and I was told to wait till I saw Doc Weiss in two weeks.

 

So there I was. I had just gotten my stitches cut out from my side by Doc Evans. They were tough to get out. It hurt and he kept apologizing and backing off. I tried to convince him to just keep going. Pain is temporary except in torture which this was. He got on with it and they were out. They sucked and I determined that there will be no more major holes put in me for a while. Doc Evans wanted to know if I wanted the biopsy results but I declined. I wanted to stay ignorant for a few more hours. Back at it. Sitting there in room 24 with Space just waiting for the inevitable. Doc Weiss comes in and sits down. I ask him to “sock it to me and if the results were inconclusive I was going to scream.” Actually, my reaction may have been worse. Here comes the problem. He rambled. There was good information but it all boiled down to this. I do have a fungal infection and that needs to be taken care of quickly. Then the R word. Relapse. The cancer was back and a new fight was on.

 

Fucking cancer. After we take this fungal infection out with some new harsher drugs we will take this cancer on with a new chemo regimen followed by a stem cell transplant. We will kick this. I just have to continue fighting and running. I cannot forget that I have the Disney Dopey in less than a month. No reason I can’t have some fun along the way.

 

Race Report: Rock n Roll Philly Half (part 1)

 

I know this is a long time coming and I owed this quite a while ago but I tend to procrastinate with these things. At least I am getting it done. So here it is. I have been trying to figure out where to start. My training for this race has been quite a different experience. First off I trained with others. I am usually a loner out there. It is not that I don’t like running with other people. I love it but I tend to kind of go into my own world and that is cool as well. Moving on I was brought back from post recovery to race condition through the help from Team In Training (TnT). What a great organization and what an amazing group of people. I hope to never lose contact with them and look forward to more training and hanging out and making new friends as others join. Honestly, when I started at the “Kick off” I was having trouble running for more than about 15 minutes at a 16-17 min/mile pace.

 

Really, all the credit goes to my teammates, the coaches, mentors and staff for getting me ready for the starting line. I knew it would not be easy but all it takes is one step and then repeat. Over the summer the mileage grew and my pace settled in to about a 14min/mile. I could do faster for shorter distances but that is not the point. For those out there that remember me rocking out sub 9 minute miles might wonder what happened. A couple of things. When I went through some very rough patches I refused to eat and lost a lot of muscle mass. It will take a while to get my legs back and they will never be the same. Also, my left lung was the house of tumor for several months and like any crappy tenant they left a mess behind. Scar tissue and the like reduced much of that lung capacity. Less lung capacity means less energy flowing through the veins and a moderation of pace keeps things in check. Needless to say the tumors did not get their security deposit back.

 

So here I was, trained up and ready to go. It started Saturday morning where I gave a rambling mission moment talking about my man Timmy and his experience with TnT and my awesome friend and brother Abbey. Abbey is a survivor as well that inspired others with her TnT exploits and was an amazing resource when it happened to me. She was always there for me, even when I didn’t ask and she was unaware, her presence and share experience helped in those days I needed a little kick in the back of the mind. Well, I rambled then Space, the Psycho and I went for a nice walk at Fairmount Park. Afterwards we went over to the hospital for an infusion of anti-fungal that the doc had me on. I had spent that time sitting there writing and taking notes. We later checking into the hotel where the Team was staying and got ready for the Team dinner. The created an honor guard to the dinner that consisted of cheering, bell ringing and general noise making. It was awesome and loud. A nice dinner and then got to some business. Some words on the course and the plan in the morning and the like and then it came.

 

I had been asked to say a few words because they thought of me as an honored something. So there I was. Throughout I was told that I was an inspiration and the like. Really, I kind of thought I was just being me. Which is kind of an ass about things. I just could not give up on running it makes me happy. Instead of rambling I actually wrote something out which helped. I actually wanted to refocus some things. It was a my journey but really it was about those that where there for me from the beginning how the honor was mine to have had such heroes at my side the whole time. At points I choked up and perhaps the words on the sheet became blurry as my eyes may have teared up a little but I made it through and dinner was done. The girls and I said goodnight and it was off to the room for some shut eye.

 

Waking up at zero dark thirty, we made our way down to the lobby of the hotel and with coffee in hand I met with the Team and some pictures were taken. It was kind of fun walking in a group to the Team tent and the starting line. We hung out for a while before we headed for our coral. There were a bunch of first time racers and I could see their nervousness. I am old hat at this so I just kind of relaxed. It just another start line followed by just another finish line. Boy was I wrong. Because of my new pace I was relegated to the last coral so I had a while to think about what was going on. We walked and joked around wondering if the winners would cross the finish line before we started. We were only about 30 minutes behind the first starters and noone can get 13.1 miles in Philadelphia in 30 minutes not even in a car. It was about 25 meters from the start line when it hit. It was that holy shit moment. I had had a similar experience in a similar spot when I saw the finish line at the Philadelphia Marathon when I was about to break 4 hours for the first time. I was awestruck and a nervous wreck. I couldn’t believe I was where I was. I had made it. We had made it. Cancer be damned.

 

We surged into a jog, crossed the timing mat and …

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

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