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.

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.

 

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.

Saying Goodbye to an Old Friend

 

In some ways it does not seem that long ago but in more ways than the other it has been an epic journey with my PICC line. In case you don’t know what a PICC line it is a Peripherally Inserted Central Catheter. That can be a lot of mumbo jumbo but it is a tube stuck into your arm/vein that reaches all the way down to just above your heart. On the outside is several valves and ports that allow for meds, blood, chemo and the like to be pumped directly into the system.

Lets go the the beginning. I was still in Tennessee and having had my first round of RICE I was in some pretty bad shape. I was getting IV fluids and meds. Blood was drawn every few hours. My veins were taking beating. They had collapsed on about four IV lines. They were hiding and moving at any sign of a needle. It was getting so bad that specialist were called in because the rescue ninjas (nurses) were kind enough to not torture me. That was the conception of the PICC.

All of a sudden one day, while Space was out and about, I was taken down to the first floor of the hospital and waiting in the hallway. From what I remember, I was moved onto a table and my right arm was extended out and strapped down. The dude there placed a device on my chest and covered me up. Then he blocked my view. I assumed he numbed me up but is still hurt like hell when he poke a hole in my arm and vein and proceeded to up the PICC line in. A dressing was put on it. He handed me a booklet that covered the care and emergency cases. He told me that the needles would no longer be necessary that blood could be drawn through it and all my IV meds would go as well. I knew I had a shit eating grin on my face. I could not get it wet for risk of infection.

So all was good in the world. I got this new PICC line and my veins were going to get the chance to heal up.

Back to the wet thing. This meant that my swimming days would be over. I am not a big swimming guy but it is great cross training and I love water parks and playing with the Psycho. Also,I had to wrap the line up to take a shower. It was a pain in the ass because sarran wrap worked okay but the adhesive in the bandages would stick to the cling wrap. Large baggies were okay but that could get expensive. It got to the point where maybe a shower was no longer worth it. That’s right I decided to stink it up and I was foul. Then it was during a stay at the hospital that some amazing rescue ninja wrapped me up with a specimen bag. I worked awesome and was cheap (free). So I was more inclined to clean up now that a suitable procedure was found.

There were a couple of other quirks associated with my dear friend the PICC. I had it installed at Vanderbilt but was now being treated at Jefferson. The PICC lines at Jeff were a cheaper model which required clamps. So every so often, a nurse would go looking in vain for the clamps. It was amusing at times. The other difference between the two models was that mine did not need to be flushed with saline daily. Another part was that the dressing had to be changed weekly. I don’t know what the bandage adhesive was formulated with but it was awesome and should be used on all bandages and band-aids. It stuck real well but did not hurt when it was peeled off. Well a little but nothing is perfect. The best thing is that it did not irritate my skin at all. Even band-aids would eventually itch if I left them on too long. In any case the dressing change was interesting because there several point on the external line that had to be secured. The entry point was always double layered with a bio patch and the valve clamped down with double latches. Then each lumen would be taped down to reduce the dangling.

There have been many of times where my old friend was in danger. Over and over again when ever I had a fever my PICC line was being blamed for it. Every time the doctors would say it is a source of infection. It became comical. It also hurt because of some ludicrous policy that forbid blood from being drawn from the PICC. This of course meant more sticks. At this point I only had one good vein so that is what has been tapped for the past 9 months. Back to this fear of the blue PICC line. This one time when I was in the hospital at 5AM an intern tried to convince me to replace it with a central line. I already knew that the central line and a PICC ended up in the same place but the intern did not seem to know that. That is why I cannot stress this enough. DO NOT TRUST INTERNS!!!!!! I told him to come and see me later after I woke up and had breakfast. He did not come back. The next time my dear old PICC was in danger was when an ER doc said he was going to have it removed. I made it clear that if he were to touch my PICC he would feel lucky to already be in an Emergency Room. This one time I was having a hard time getting blood return and everybody thought there was a problem with it. I argued that if they never intended to draw blood from the line why do we care. That was all fixed when I tripped on an unmarked speed bump in a dark garage and landed on my right arm. After that we never had a problem with blood return.

To think all the good stuff that went through there: Platelets, Blood, Anti-virals, Anti-fungals, fluids, chemo (RICE), lasix, morphine, fluids, potassium, meal in a bag with some acronym, did I mention fluids, magnesium and anesthesia. It all we through Mr. PICC and he took I like a champ.

For better and worse my old friend was there to make intravenous infusions so much more pain free. This was a blessing especially when I was getting infused for hours seven days a week. The only thing that would be better would be that I would not need infusions.

Well today is that day. I had an appointment with Doc Weis this morning and the results from my last CT were discussed and it was decided that I no longer needed Micafungen infusions three times a week. Therefore I did not have a foreseeable need for the PICC. Other future decisions may bring Mr. PICC back but the procedure is relatively easy. So at about 11:00AM this morning Rose said “When I tell you take a deep breath then hum.” She said when, so I sucked in and hummed where she proceeded to pull it out and here it is.

Rose and my PIICC Me and My PICC

Now I have this hole in my arm which is not that bad. What has been weird is feeling the sleeve of my shirt on that part of my arm for the first time in nine months.

Either way, it has been a good run. You lasted about as long as a good pair of running shoes and you know how much I get choked up about that.

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.

That’s the Name of the Stay part 1

Well, in the past few months I have spent quite a lot of time at the hospital. Some for appointments and some as an inpatient. Space put it well when she reminded me that after 6 months since I decided I needed to move back up to the Philly area I have spent 3 months in the hospital. The hardest part was that I did not have a lot of chances to run and I hated to walk in the hallways with that damnable IV pole. In any case, when Space and I would discuss the what had happened and when. That was when we started naming each stay so we could keep up with the details. And this is how it all went down in what ever order I choose.
None of the names have been changed to protect the innocent.

The Vanderbilt Stay:
It was a Monday evening in September and I was feeling rather warm. Sure, it was early September in middle Tennessee which meant still hot but I was inside where I keep the air conditioning set at walk-in freezer. I really did not think so much of it but I had just received my first cycle of R-ICE the previous week and the medical persons had warned that I should look out for fevers. Evidently, they indicated some form of infection. We called in to the hotline; after some discussion Space and I hightailed it out to the Vandy ER. The ER experience was really good: they triaged me quickly, Took blood and saw that my counts were down then proceeded to admit me. The only bad part was getting a room. Poor Space was stuck in a very uncomfortable chair till very early in the morning when I was finally transported up to the room. Here comes the worst part.
Really, they could find no infection therefore no reason for the fevers. But that did not stop the fevers. I spiked at least one a day perhaps even two. We were trying to move at the time. This was to be my last week in Tennesee but my mother was there everyday till she had to fly off to Texas. My man Sumo Joe from V&C came to visit which was real cool and he even brought a big bag of mints. Eventually, the move occurred. Jen and I had given up the keys to our home and we were essentially homeless. The best part of this was that I had Space with me 24 hours a day.
I was having a problem where I was getting IV lines in both arms and blood drawn several times a day. Eventually, my veins started to collapse and hide. There were times when the nurses missed a lot and had to give up. The end solution was a PICC line. Though not the most pleasant procedure in the world where they stuck a tube in the side of my arm and sent lines down my vein to just above my heart. My fevers finally subsided for 48 hours in a row. Space rocketed out of there at the speed of light with me at the navigators position.

The Long Stay:
I know, I know. The long stay sounds long and we all know I am rather long winded any way. How on earth can it be described in a short manner. IT CAN’T. Plus it is hard to type contractions in all caps. It wasn’t till I got to the second “T” that I should have used the caps lock button. So here it goes, the long stay.
We were up in Philly and had already met the deity in his own eyes, Dr. Weis. The plan was to go in for three days of R-ICE. At TJUH it was an inpatient procedure. If I remember correctly the first two nights went okay it was the third night that went all to hell. I went through what they were calling a mental status change. I obviously went from Duff to sane in the speed of Usain Bolt. According to reports I was answering questions that were not asked. This really meant that the right questions were not being asked. Some other shit happened where my stats went haywire. What I remember was that they woke me up in the middle of the night and a bunch of people were all around me doing stuff. I was pissed that they were waking me up in the middle of the night, again. Then they moved me to some room on the 5th floor. I was on the 3rd floor. They told me that I would be there till they could get me a room back on the 3rd floor. I informed them that if they hadn’t panicked like a bunch of frightened children I would not be waiting for a room, the one I had was perfectly fine till they took me out of it. I eventually made it back down to the 3rd floor and they put me on telemetry. This is basically an alarm system that only alarms when one of the sensors with crappy adhesive comes loose. The nursing staff tend to ignore this until a critical mass (usually 2 or more) have removed themselves from my skin. I think at one point I was tired of having to lay down the way they wanted me to and took them off. This freaked them out. It turns out I actually have a drug allergy: phenergen. I am sure Space could tell you but I have no idea what it does and why they gave it to me but it was the start of all that was unholy in my body. It wasn’t long before the R-ICE started really kicking my ass.
The fevers were coming on, the fluid and drugs were being pumped in and the nauseousness was just starting to ramp up. For some reason people were coming in at way to early in the morning and bothering me with useless questions. There a couple of particularly dumb ones like do I know what date it was and have I had a mental status change. The days had started to blend in and I had no idea it was for a bit I tried to remember what yesterday was and add one. Usually I was wrong but close. I started looking at them with as much vile and hate in my eyes as I could and said “no.” After enough time they realized it was a useless question and stopped.
With the mental status change I eventually asked how on earth I would know. It is like the shrink asking the patient if he was crazy. That reminds me because of the aforementioned mental status change I had a consult from those clowns from psyche. The real funny part is that they made Space leave the room, so as not to influence my answers, and asked me idiot questions like if I was suicidal or if I was feeling happy. My responses came in the form of high brow insults flung at them and mostly “what the hell are you talking about it effing idiots” type of looks. They spoke to Space and thought I was yessing them to death and was I always that way. You jerks can’t get into my head. 😛
The nauseousness was really taking over and I was vomiting all over the place. I eventually stopped eating and that concerned everybody. All I wanted to do was roll on my side and sleep. But know everyone said get up and walk around and eat. That crap wasn’t happening. I had a spinal tap done to spread some chemo to my brain and later that night they tapped my back to drain some fluid around my lungs. It hurt but that still did not get me going. The problem was that I was missing so much fuel that I was burning through the fat quick and then I started eating away at my muscles. I saw how it was affecting my legs but I was still not going to eat. It finally took some begging from a cutie of a Nurse Practitioner,Tina and a well deserved tongue lashing from Space reminding me, because I had forgotten, that I had more responsibility to keep up with and that was taking care of myself and eating. It was harsh and at the time kind of mean but I deserved and needed it. I started eating even though I was not eating on the hospital schedule. I tended to eat dinner at around midnight and everything started shifting from their.
There was a lot more to that stay like a couple of procedures that in my lungs and a misfire with the CT scan contrast stuff. A total resistance to anesthesia and some other nightmares that went on but that can wait till part 2 of “The Name of the Stay” 35 days later I got out of the hospital that was only supposed to last three to four days. Stay tuned.