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.

Rescue Ninjas-Sisters and brothers of nagging, bossiness, and no mercy

I could say that without the intervention of all the doctors that have worked with me in the past year I would not be here. Starting with Dr. Bill who was awesome with making sure it wasn’t just pneumonia and Doc Reddy helping me out through the initial steps and transition to philly and who can forget Dr. Teddy bear himself, Neil Flamenburg. There are other doctors out there that could take the credit or the blame (I’m looking at you interns and Jefferson ER docs) for my medical care and one day I will get more specific on them. Sure, Space and my mother were instrumental in my care and keeping up with my many ailments, mood swings and progeny. But today is dedicated to the ones that did the bulk of the work. The nurses or as I have started calling them recently, Rescue Ninjas (RN). I do not want to exclude the Nurse Practitioners that were there for me in my darkest times and my best times. So don’t let me forget them.
Before this ordeal I had not had a lot of experience with nurses. Most of my experience came from the Psycho. There were the amazing nurses that gave me a bad look when they realized I was giving Space different colored popscicles so she would throw up rainbows during the birthing process. Those same nurses were nice enough to put a chair behind me for when the time came for the Psycho to make her debut. From that point, it was pediatric nurses. Only on rare occasion did I speak to a nurse for my behalf. I just didn’t go to doctors much. That has changed. So really I did not know what to expect. Actually, I had no expectations at all. That is the best way to take these types of things because TV lies to you.
TV lies to you. That should be the 11th commandment. Let me sum this up. There are only two medical shows that I have watched in the past few years M*A*S*H and Grey’s Anatomy. M*A*S*H is a very different category but Grey’s Anatomy just has it all wrong. Lets get the first point out of the way. I have it on good authority that there is no way interns have that much energy for all of that sex. It is just not happening. Second, I will start with advice. Don’t ever let a doctor take blood, perform the x-ray, hook up an infusion, place a central line, or start an IV. They have no idea how to do it and if they did it has been years since they would have had to do it on a cadaver that doesn’t feel pain and can’t re-die when they botch it. That is what the Rescue Ninjas do. There are some exceptions with specialties like anesthesia and I drew a blank on another example but you get the idea.
The Rescue Ninjas do the real work so lets start from the beginning. Or at least the Chemo. My first few rounds of Chemo were done at Vanderbilt and it was before I got my wonderful PICC line. They made sure I was sitting in comfort before they took care to stick me for the IV. The chemo I was on at the time gave me red urine afterward. They were nice enough to warn me and tried to keep track of me so I did not show any reactions. Unfortunately, at Vanderbilt they switched up who was taking care of me at the infusions so I never was able to retain their names. I had also spent some time as an inpatient there and again they were awesome. At one point, my veins were collapsing from IV needles. I had one in each arm. After the first two went, the later sticks would either collapse in short order or it would be a total miss. My Rescue Ninjas knew they were outmatched by my vein situation and made sure to have the Phlebotomist specialist come up when blood needed to be drawn. It didn’t take much time before the decision to have my PICC line put in. Then they showed me how to wrap it up when I needed to shower because the PICC is not supposed to get wet.
As awesome as the nurses were at Vanderbilt the Rescue Ninjas at Jefferson were even more awesomemer. Well, it all depends on how you look at it. I had gone into the hospital for my second cycle of R-ICE and everything went south real quick. It was my Rescue Ninjas that were on top of it all to get me the help I needed right then and there. They were also the ones that insisted on me calling for them when I needed to get up, which was usually only to use the toilet. There were many a time when I was really to weak and disoriented to really take care of some of the most basic of tasks. Of course I was bullheaded as usual and insisted on trying to do this stuff by myself. That is why they set the bed alarm but I learned how to turn it off. One Rescue Ninja named Thuy figured this out and would somehow always find a way to be there when I was trying to sneak out of the bed after turning off the alarm. At one point I think there was a conspiracy to put me in one of the rooms closest to the nurses station for this very purpose.
There were the drugs that I was getting prescribed to me and they insisted that I actually take them. Some insisted that I take the pills on their schedule. At times they stood over me till I swallowed them all. I was having a real bad gag reflex and they were ready to hand me the basin for tossing my cookies into. Eventually, they tended to realize that I was on my own schedule and an agreement had been reached where if I got to them before the end of the shift it was okay.
The eating was another story, all together. I had stopped eating during the Long stay and they were getting fed up with it. The NP (Tina) that pre-rounded on me finally got fed up with me and did not let me get away with the lame excuse that I was not hungry. It was a fight she took on because she knew she would win. On a later visit she got on me because I was eating fruit when I needed protein instead. I did eat but it was her efforts and collaboration with Space that started getting me stuff that I would eat and was good for me.
I am still trying to figure out a way apologize to the Rescue Ninja that broke my fall when my blood pressure dropped and I passed out. I did hit the floor but it would have been much worse if she was not in my way. There was this big push to get me to get up and walk the halls and sit in the chair that was in the room. I was never really up to it in those early stays plus I hate walking with that damnable IV pole. So when I started paying attention I had put together a Duff Bill of Rights which was a compromise where I wasn’t going to sit in the chair because it sucked and the best chances to get me to walk was when I was not hooked up to the IV pole. Other “requests” included trying to bunch the infusions together to spend less time on the IV pole and to reduce the amount of times I was woken up in the middle of the night. My Ninjas looked at my wish list and did everything they could to help me out. They were enthusiastic about my walking the halls and only harped on me when I was supposed to wear a mask and I had “forgot.”
I realize that this all goes with the job description of Rescue Ninja but I know at times I can be real difficult. That might be an understatement. On top of that it was at times hard for them to understand what I was saying. I would have to rethink what I had said and put it back into english and I know that was frustrating for them.
I want to get back to the fabulous Nurse Practitioners that have been a big part of my care these past few months. I have already mentioned Tina. Her and Patty were the NPs that took care of me when I was an inpatient. They loved to come in at 7:30 AM or earlier to wake me up and ask me questions. In the early stays I was at least an hour from waking up and I was not pleased. I had viewed them as some sort of torture device set upon me. The worst part was that a doctor, Ninja and an intern (there is a difference) would come in separately just as I would get back to sleep from each visit and ask me the same questions each time. I had suggested that the should get together and do it all at the same time. Tina informed me that was what rounds were for. In any case, the patience they exhibited with me was awesome. As Yoda had said, “There is another.” Rose is Dr. Weis’s NP and she has been a huge help with getting all of my questions answered and keeping up with my meds and how I have progressed. With Rose there is no mentioning anything to her that is supposed to be held in confidence. Part of her job is to communicate with Dr. Weis before he sees me. I had mentioned at one point that my potasium levels were holding pretty steady and I had not taken the prescribed supplement for about a week. Dr. Weis came in and said that I might as well stop taking the potasium since it already looked like I was off of them anyways. She also narc’d me out when I signed up for the marathons in the fall and winter.
Since Patty and Rose see me in different capacities they really have varied experiences with me. But one thing stands out. They have both seen me at my most vulnerable. The bone marrow biopsy. It is this procedure where Rose discovered that there is not enough lydocaine in the world that can numb me up. The thing is that the process is poking a whole in my hind parts, drilling a small whole in my hip bone, sucking out some marrow and taking a piece of bone. Well, I am bent over the table with my britches pulled down and I am feeling it all so there are sailors outside the hospital that are blushing. I have a death grip on the bed and at times I am screaming and pounding on the wall. Part of me hopes they never have to have it done to them but another part of me thinks they should get it done themselves.
Now onto the infusions at Jefferson. They try to make the experience as pleasant and normal as possible. This is where the outpatient chemo is administered and the other drugs. One of the ways they achieve this is by assigning you to a Ninja’s care. In my case, my Ninja’s name is Andrea. So over the past 8 months when I go in to get antibiotics, a blood transfusion or what ever the Doc sees fit to inject into me it was Andrea overseeing my care. The only hiccup in this plan was the weekends but that was okay. I cannot thank Andrea enough for being my Ninja and one day I know I will stop getting infusions; I will miss her and all the other staff at the Infusion center.
To put some more on that point. It has been two months since my last stay and I was missing my inpatient ninjas so a couple of weeks ago Space and I walked around the hall ways of the 3rd floor and saw a few of them and talked for a minute or two. When this is all done, I will miss but never forget (names not included) my Rescue Ninjas. They are the real gears that make this whole machine work.