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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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.