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.

Hodgkin’s Files: Poked, Extracted, Scanned, Planned and Dead Batteries

Today was the start of my attack on the Hodgkin’s Lymphoma that is currently taken residence in my body.  The funny part is that I have had two bronchoscopies, and a needle biopsy where nothing pleasant was going to happen but I was calm and had no reservations about any of them going in.  Last night on the other hand I was nervous and really could not sleep.  I was beginning to think that I may be comfortable with my cancer.  Much like a prisoner that tries to escape over an over from prison but the moment he is released he wants back in.  I know it seems crazy but I was just kind of going through something last night that was just unsettling.  Perhaps, I was getting a little doubt that I would be kicking this cancer in the hind parts.  Any who, I had a hell of a time sleeping which is not totally abnormal but I had to be up real early to get the Psycho to day camp at 6am and then get myself to Vanderbilt Ingram Cancer Center.

I woke about 4 minutes before my phone alarm went off at 5am so I waited for that song of all songs “Furry Walls” by Infant Sorrow.  If ever there was a song that was made for future survivors it is “Furry Walls.”  I had to fast because I was supposed to be sedated so that meant no coffee, no water, no nothing.  It sucked.  We got there with plenty of time to spare which was awesome and the parking was free.  I checked in and waited with the smell off coffee all around me for some labs.  Why on earth do they always have to take blood when you go the hospital.  Vampires are real people and they do not sparkle but they do wear scrubs.  Only three vials of blood so there was no danger of breaking the record set by my father in-law Dave at 11.  I came close at 9 in the diagnosis phase last month but still second place is first looser.

With the labs done, we went up to the Hematology Clinic for a Bone Marrow Extraction.  All was well till a Dr. Kim calls me into a room to have a little discussion.  I had no idea what was going on so I sat down and she explained that she works on the analysis of the bone marrow that is extracted as part of her duties at the hospital but the majority of her time is dedicated to research in a disease that I do not have.  I cannot remember what it was called but it is one that typically shows up in an older demographic.  She wanted my permission to take a little extra of my bone marrow to use as a normal control in her study.  My first thought was, lady you really don’t know me because there isn’t a soul that would consider me a normal control of any sort.  But, it took no convincing for me to want to participate in research.  I was more than happy to help if I could so I agreed to let her have an extra 10 ml of bone marrow for her study.  I certainly hope it helps in some way.  Now came the fun.

I was escorted to the extraction room where the nice nurse explained how things were going to work.  I was given the option of sedation or local anesthetic.  I asked the difference and how each would affect me.  See Space, I can be an informed patient.  It turns out that I could have skipped the fasting if I had known that I could choose the local.  I chose the local.  I don’t like being in a drug induced grog.  Well the NP that came into do the procedure explained more in depth what was going to happen and I asked if I could put on my MP3 player and they said rock on.  It was awesome.  Sonic Youth, Nirvana, Breeders, David Lee Roth, Bad Brains and the playlist went on.  They has flipped me over on my tummy which is very uncomfortable on my chest these days.  I felt some pressure and some pinching.  They even tried warning me as they went through each step.  I was relatively relaxed then the NP got my attention to tell me she was ready to extract the marrow.  She explained that typically people feel a cramp like sensation in their butt or down their leg.  I said go for it.  It happened.  She lied.  I know cramps in my back side and legs and this was not it.  It was very new and very painful.  To say I curse is an understatement.  I have a free range of the language as needed.  This time the only thing that came out was “WOW!”  I could feel the marrow being sucked out of my hip bone and there was an empty feeling in the bone where there used to be marrow.  There were going to be at least two more runs at it and I was game.  What a feeling.  After the first hit I felt one of the nurses give me one of those “there, there” rubs on the arm to comfort me.  After the second hit, I asked if I could see the marrow.  It was cool.  The NP showed it to me and the piece of bone as well.

On to the MUGA scan of my heart.  Actually, I was free to eat but no caffeine (not true but I was told it).  So I went to the cafeteria for some bacon egg and cheese biscuits and a cup of decaffeinated poison.  On to the radiology department where I was IV ported and injected with a radioactive die.  The radiology tech was real cool as I have found with all rad techs.  We chatted it up a little and then I got the chance to take a power nap as they scanned my heart for 8 minutes.  Not much to say here but I was never really claustrophobic even though I was enclosed by two doughnuts and a scanner.  Just after this it was actually time for some lunch and all was going so well.

We had some time before the next appointment with the Oncologist (Doc Reddy) so a trip to some place with some food and coffee was in order.  We got to the car and plopped in which kind of messed up the bandage on my hip.  I turned the key and nothing happened.  The battery was dead.  It was working fine earlier in the morning.  Perhaps, I left the lights on or something.  I unplugged and turned off everything and still nothing.  The clock reset and there was not juice.  Well, I was about to call AAA when someone told me that Vandy had a guy that can come by and give a jump.  All I had to do was go the the info desk and ask them to call him.  We did not have to because, he was in the next row.  He came by and the jump worked right there.  Instead of risking it by stopping for lunch a drive through was decided upon.  Wendy’s!

Car parked again but backed in just in case the battery still did not charge up.  My hip bandage was all jank so I went back to the hematology clinic to see if they could fix it up again.  What I did not realize was that was where I was supposed to be for my next appointment.  So the fixed up the bandage and got me in to see Doc Reddy, early.  I love this place.  I have never been to a big hospital where you get in early just because you show up early.

The NP that works with Doc Reddy, I cannot remember her name, came in and asked the important stuff and a few more in depth questions.  She asked about my alcohol use and I told her that I refused to answer the question because the forms only choices were:  Never, Abuse, Quit on date.  She understood that I have had a drink on occasion.  I gave her my CT and x-ray scans and she shared them with Doc Reddy.  Soon afterwards, I met Doc Reddy for the first time.  We discussed the condition and some of the further testing I was to go through like the PET scan, EKG, more labs, and PFT.  Then the real plan.  The standard was a chemo session every two weeks for six months.  Unless something really changes in the testing that was the plan and the plan starts next week.  I was told about the side effects, like hair loss.  Goodbye, back hair.  I have always hated you and I will relish you demise.  I will miss you goatee and mustache you have been a good friend whether just the two of you or as a part of my most awesome beard.  Like McAuthur, you shall return.  There was the other stuff like nausea and blah blah blah.  I was going to suck at times but it was for the greater good.  We discussed contributing to a clinical study.  I was game but I may rethink it if I have to get more biopsy done.  I know it was selfish but I really am a little gun shy about that.

So a day with poking, extracting, scanning (with napping), a solid plan of attack now to get to the psycho to celebrate more birthday.  I have a 10 year old and she is the reason.  In any case, the battery did not charge.  We called for the Vandy guy to come and help out but he was going to take some time, which was okay.  Then a saint in scrubs came by with some cables and we eventually got the Blue Meany (my car’s name) started.  He and I were in agreement that I don’t stop the car till I get to a battery installer and change that thing.  It was so old that it had open cells.
If you think the battery was the worse part it was not.  The psycho wants to know tonight.  I did not want to tell her on her birthday but she wants to know.  I will let you know how that goes.

Thanks to everyone out there for all of your support and thoughts.  Lets kick this shit.