2015-04-01

Frais Prince de Ma Chambre

Now this is a story all about how,
my life got flipped turned upside down.
And I'd like to take a minute
Just sit right there
I'll tell you how I became the Prince of a town called [all alone in my room].

Yay!! I'm a PRINCE!! In the land of My Bedroom I have become ruler as far as the eye can see!! How did I achieve such status among mortal men? Stay awhile, and listen! 

I started ABVD to treat Hodgkin's at the end of the 2009; November I think.  I get my first treatment and then go back 2 weeks later for the next where I am then told that after that FIRST TREATMENT my white blood cells tanked and I was what they call neutropenic.  ರ_ರ

From then on out I was given a shot of Neulasta after every wonderful chemical cocktail, told I couldn't eat anything raw, unpeeled or uncooked and I had to be really careful out in the world because risk of infection suddenly became really important. If I got an infection it might delay one of my treatments which were to take place every 2 weeks.  Any delay might give the cancer more time to grow and all the misery of chemo would be for naught. (1) Any fevers over 101º meant an instant 2 or 3 day trip to the hospital for IV antibiotics to make sure I didn't have an infection.  During this time I was actually really lucky because, for the next 3 years, through ABVD, ESHAP, GDP, my allogenic stem cell transplant, GvH, and Adcentris I never had any infections.  I only had fevers up over 101º when I was on ESHAP and they were sure they were just "chemo fevers" where you're body makes a fever as a result of the deadly chemicals that have just been injected into it.  NO! I take that back; when I had my transplant and a few times after I was positive for C.Diff. (2) Let's be honest though there's not much *I* could've done to prevent that one (although I do wear surgical gloves now to wipe my butt every time I pewp).


I didn't start having infections until the Graft vs Host  caused Bronchiolitis Obliterans and my lungs weren't able to clear the mucus/infectious material out properly (and where I learned my body apparently doesn't make fevers anymore so I have to constantly remind my doctors that fevers are NOT a diagnostic tool to use in their decisions about whether or not I have a lung infection).    


So all of that is probably just a bunch of background noise to the reason I thought I should write this post which was about how I became a kind of shut in.  A hermit. A germaphobe.  


Here's where a bit of that good ole neurosis kicks in.  Sometimes my doctors will tell me something and I just don't want to hear it and think of how I know my body better and yada yada yada I do something any way.  Like how my pulmonary doctor recently told me that I shouldn't be doing squats.  I said ok to them, but then returned to doing them as much as GvH would allow (it wrecks proper muscular development/regrowth). Likewise I also had it in my head that the sun would be fine after my transplant until my doctors and PA's told me how many of their patients had that same mentality and then they would come back with cancers so bad they would have to cut off limbs to try and stave off growth and even that wouldn't stop it. In hindsight I probably should've taken it even more seriously than even they did. (3)


For whatever reason, I took the dangers I was told about possible infections very seriously.  I appreciate that my parents took it very seriously too.  I apologize for all the trees that have sacrificed life and limb to offer themselves up as paper towels in our household.  Back then I had a lot more energy (even despite going through chemo that would zombify me for a week) and I would use disinfectant wipes to wipe down all the cabinets and handles in the kitchen that I would touch throughout the day.  I had a squirt bottle filled with bleach/water to sanitize my light switch and door knobs.  I kept my distance from people if I had to go to the clinic, taking a WIDE berth of anybody that even sniffled.  Used my long sleeves as a barrier if I had to open a door handle but always opted to use my feet to open a door if I could. (4)


Here's the biggest thing that happened:  I stopped going out.  The way I figured it the more I went out around people, the more I exposed myself to their bacteria and viruses (plus all the problems associated with sunlight and cancer/GvH flares/etc..). (3) Even at hem/onc clinics people in America just didn't care if they coughed and sneezed all over the place (I say in America because if you go to South Korea it's normal for people who "feel sick" to wear a mask to protect those around them. They even come in different styles so girls can wear "cute cat" masks and such.).  So if I limit my exposure to those things, even if I WOULDN'T get sick from the exposure, I'm playing the odds.  And besides, all of this is TEMPORARY.  Eventually I'll get healthy again and go back out in the world!


I still keep this mentality that it's all temporary.  Maybe it's a bit of denial? I don't think so.  There were a few other people that went through transplant at the same time as me and some of them just...I don't know.  They wouldn't take their medication.  They sort of didn't believe they really were going through all of this and understand the seriousness of taking their meds or taking proper precautions.  Consequently they were also always getting admitted for infections or complications =(.  I feel like THAT's denial but I don't want to judge someone elses' situation; I have no idea what they're going through internally.  All I know is that I cling to the hope that this will get fixed.  God will send that east wind miracle and I'll be out in the world again.  Problem is things just keep piling up so it hasn't happened. YET!


When I was diagnosed with Bronchiolitis Obliterans I had a very rigid schedule to keep with my meds and since putting on weight was one of the best indicators of clearing the wicked bacteria I had growing in my lungs (M.Abscessus 5), eating more calories had increased on my list of important things to do.  So now my whole day was pretty much consumed with medication, food, sleep, food, medication, food, sleep, walk, food, medication, on and on and on. 


But I keep holding on to that fact that it is temporary. This too shall pass.


So I stay inside.  


I have some really amazing friends though, who understood all of these crazy things I had to do to keep clean and keep safe.  Even with all the sanitizing and weird house rules would still come up for a few days and subjugate themselves to my insanity.  They bring the sunshine in! Having friends like that is such a blessing.  A balm for the burn of isolation.  It's having a friend like this that can someone help get through a lot of the inane things you'll find yourself doing when you're stuck at home. 


So are there any other hermits out there? Temporarily in isolation waiting to get back in the world? What do you do when you're not taking care of your squishy meat bag? What will you do when you can get out there again? Anyone stuck inside for good? Lemme know in the comments!



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1 - 
I should mention here that I really REALLY don't like drugs or medication.  Previously I had never even taken a tylenol for a headache. I didn't like the side effects and knew my body could take care of itself.  Indeed this seemed quite effective as I never really got sick; just sinus infections at the beginning of Spring (this is baring some of the other genetic things like migraines and digestive issues that I didn't really have any control over).  So agreeing to do chemo was a HUGE step for me.  I had done a natural treatment that I had seen work on my friend’s grandfather but when it wasn't working for me I decided to go with chemotherapy.  So me deciding to do it, I wanted to do it RIGHT and have the best chance of success I could, which meant no infections or anything that might delay getting the optimum course of therapy.


2 - C.Diff sucks.  A lot of people who get it have it much worse than I did.  Although when I first had it during my transplant I was also pooping out the remnants of my digestive tract from mouth to anus.  By the way that buuuuuuurns worse than a triple thai spice pad phet. The other time I was confirmed was another time I was in the hospital.  Since starting IV antibiotics to treat pulmonary infections there were 2 or 3 times where the beginning of treatment would duplicate the symptoms of C.Diff and bring back that o so familiar smell (if you've had it you don't forget it) but my body seemed to adjust to the influx of chemicals and patch things up.  


One thing you will want to talk to your doctors about if you are dealing with it is fecal transplants.  That sounds really gross but fecal transplants are shown to be incredibly effective at treating C.Diff (and hopefully funding will increase to support my own theory shared by other doctors I've spoken with of it having potential to do a whole lot more than just treat C.Diff).  

3 - This is where my retreat from sunlight also started.  Now you'll notice I was resistant to the idea of abandoning the sun.  I love the sun.  I love being outside.  I love going on adventures and letting the sun beat down on me.  So it was really hard to somehow think of the sun as a danger now.  I did though.  I listened and took their advice.  This is why I say I should've taken it more seriously than even they did.  You see most doctors will, with varying degrees of success, try to recognize the demands that their treatments are putting on their patients lives.  Often this will result in them giving advice that makes you more able to live your life, while keeping your risks low.  An example is how my doctors tell me I should go out and live my life more.  I tell them that every time I do that I end up getting a pulmonary infection.  An infection that puts my life at risk.  An infection that causes me to take medication that often wrecks my body in ways my doctors don't always recognize as legitimate until it's putting me in the hospital (see: my worsening migraines for a year and a half until they started causing paralysis). So to ME, the best way I can "live my life" is to stay inside, away from people, away from infectious agents in the world outside my house.  This is what I think happened with the sun.  The advice I was always given was wear sunscreen, wear clothing that covers your skin like long sleeve shirts and hats, etc.. but "i should be fine so long as I don't get a burn."


I never got a burn, but I definitely could've made sure to not go on those half hour walks (even though I was covered in long sleeves and put spf 100 sun lotion on) when the sun was going down after 5PM but it was really overcast and call my friends.  I remember dodging the sun going from tree shade to tree shade but was it enough?  Was my bias towards loving the sun make me more relaxed than I should've been? Were my doctors words about making sure I don't burn a false sense of security?


Who knows.  When I started going to Mayo after my post HSCT relapse I do know that my doctor put it bluntly that he was more worried about GvH killing me than the cancer.  So when we started Rapimune to deal with suppressing my immune system and halting GvH I took even more stock in watching out for the sun.  I was on Bactrim, Rapimune, and Acyclovir which all meant I had to stay out of the sun because of various increased photosensitivity and immune reactions and whatnot. Then there was the transplant itself and the chemo/radiation that increased risks from sun exposure.  So... why not just stay inside?  I started going for walks ONLY at night or when I knew the sun was nestled safely behind buildings and tall trees. I was real careful.  Then with BOS came the A.Terrace infection that meant anti-fungals which messed with my skin even more! On top of that? Photopheresis where my blood gets sucked out and treated with a fig extract that is photosensitive and then a machine shines UV light on my blood whereupon it is reintroduced into my body and begins to kill the Tcells that extract attaches itself to.  Ya know what that means?  MORE reasons to stay out of the sun.  Yipskidoo!


4 - I still wipe down cabinets and door handles but not as often.  My immune system is actually doing a bit better? It's mainly just my lungs, clogged with scar tissue and thus a breeding ground for infection, that are the problem.  It's still attacking what it ought not attack but it seems to be doing ok with the probiotis I slowly introduced last year and the real brick cheeses I've been eating. This is a tricky topic. Obviously docs usually want their patients on probiotics but since chemo so often causes neutropenia the risk of getting a blood infection is too high. However when I was at the NIH where they seemed VERY aggressive against treating infection (using heavy hitting antibiotics) they seemed comfortable with me using probiotics. So like I said I slowly started adding them to help my microbiome as it was assaulted by IV antibiotics every 12 hours for 18 months and seemed to tolerate it pretty well (it definitely helped the poop firm up a bit).


5 - Wow. Where to start with this little guy. So I get my bronch done at the NIH and they end up putting me in an isolation room because they only had an AFB stain and a CT and had to make sure it wasn't Tuberculosis. It took about a week to identify it (only a few days to identify the Aspergillus Terrace that was also living in my lungs) and another week to figure out how to go about treating it in the presence of everything else that was going on with me. They settled on IV Amikacin every 24 hours for 2 or 4 months (I apologize I can't remember) followed by inhaled Amikacin after that. IV Imipenem every 12 hours and Azithromycin every day. They did some studies however and found out that the Abscessus that was growing in my lungs had "inducible clarithromycin resistance" and that meant that Azithromycin wasn't going to do much of anything. This prompted me to reduce that down to 3 times a week (for the anti-inflammatory properties is has for BOS) and replace it with Linezolid every 24 hours. There was an unfortunate stop in treatment that I talk about in my other post but after that we pretty much resumed therapy except we used Meropenem instead of Imipinem because of a tightness I had noticed while using Immipenem.

Hey wanna learn about what side effects these drugs gave me? I hope you don't have ANY of them!

  • Amikacin - Increased scotomal migraine frequency from once or twice a year to once every 3 days during or 20 minutes after my afternoon infusion. Diarrhea. Nausea. Questionable allergic reaction. I could walk up to my clinic before getting an infusion and after getting an infusion and there was an obvious increase in the tightness in my chest, the dyspnea (difficulty in breathing) and cough afterwards. Shut down the stomach.
  • Imipenem - Diarrhea (pooped after almost every infusion!) Nausea. Tightness in chest that would last an hour or four. Shut down the stomach.
  • Azithromycin - ?
  • Linezolid - Neuropathy. Hard to tell if it was just Linezolid or Amikacin or both but I did notice an increase of the visual "exploded rainbow" that persists in my vision while on Linezolid versus being off it.
I once again recommend going to talk with the doctors at the NIH if you happen to have any chronic lung conditions and catch this guy. They are very aggressive in their treatment and depending on your condition you might not require such aggression but if you do at least they'll have the experience to help you through it and work with your local doctors.

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Good Quotes:

"..........................." - Anonymous

Good Music:

The Sound of Silence - Paul Simon and Art Garfunkel

Quiet - John Mayer

Edited by Henry

2015-02-27

Sometimes "Failure is the best way to learn" but here's hoping it's not the only way.

This isn't the first topic that I thought I would write about but I do think it's important.  Unfortunately I also think it's totally nebulous, not straight forward, might not help anyone. It's got to do with making decisions about your care. My hope is that if you have a rare disease my experiences might help you whether the roads I've taken were the best or not.

I can't tell you how many times my doctors have told me that I spend too much time researching; my medications, side effects, symptoms, therapies, concocting theories with a liberal arts degree and the internet.  They actually think it's detrimental to my mental health and they want to see me enjoy my life as much as I can for however long I have left. The thing is, I think it's foolish to not investigate this stuff and ask questions and make sure all the t's are crossed to ones satisfaction.  For me it helps build confidence in treatment strategy so I believe in what I'm doing even when it makes me nauseus for months and I can't eat for a week.  If you've read any of my previous posts on this blog you'll know I'm a huge fan of Viktor Frankl whose thoughts on purpose in ones life really resonate with me.  Having a better grasp on my treatment helps me define that purpose.


Anyway the reason I decided to write this post was actually because of an article I saw on the front page of reddit - The FDA buries evidence of fraud in medical trials. My students and I dug it up. - Please don't think I'm going to go on a conspiracy rant. This article just stirred up a line of thinking that was originally ignited by my sister when she began sending me quotes from a book by Jerome Groopman called How Doctors Think. They are sort of two sides of the same coin that is finding out how to treat these fragile jars of clay we inhabit; how do I get my doctors to a proper state of empathy and, conversely, how do we use this understanding to find the right exogenous supports.  


So on one side of the coin I need to get my doctors on the same page as me.  They have to understand my complaints often beyond just lab results. For that matter we need some measure of proper communication to make sure the right tests get ordered in the first place.  Personally, I have often felt like I've had a hard time accurately communicating with my doctors and I wasn't really getting my concerns through. Or, worse yet, they were getting through and being thrown right out the door.  That's where lines like this gem would ring so powerfully with me:



"Statistics cannot substitute for the human being before you; statistics embody averages, not individuals.  Numbers can only complement a physician's personal experience with a drug, or a procedure, as well as his knowledge of whether a "best" therapy from a clinical trial fits a patient's particular needs and values."

I believe medication like antibiotics or chemotherapies can save peoples lives, but each person reacts differently and we've yet to come far enough (by a long shot) to understand how an individual is going to react to something before administering it.  There's a story of a woman in the beginning of How Doctors Think that describes a woman who had a chronic illness for over a decade and because none of the doctors were able to properly diagnose what was wrong, they labeled most of her problem as psychological.  I can personally relate to this from a number of different examples but here's a short one:

I had a pulmonary infection shortly after my Bronchiolitis Obliterens (BOS) diagnosis (probably because of prednisone*...) of Asperggillus Terrace and the go to drug for it was Voriconozole.  It has a lot of weird side effects like visual hallucinations.  Now at this point it had been 2+ years since my transplant and on top of bactrim, the transplant, the GvH and other meds I had to stay out of the sunlight.  Voriconozole increased my risk of skin cancer which added further reason to stay out of the sun. Obviously I had concerns about this, as did my physicians, but "do or die" had once again visited my doorstep.  My doctors however, were overly concerned about the concurrent mycobacterial infection I had and this influenced my treatment. 

For one, they didn't pay very much attention to the fact that my Voriconozole levels were never therapeutic.  Second, despite it constantly showing up on my bronchs and the low blood serum levels they were sure A.Terrace was being treated and would just take time.  Third, they ignored my perisistent questions about the Flovent I was taking and the fact that I lived in a moldy house in Florida and the possibility these were promoting it's growth/sticking around.  It took a few months** before they decided to try and raise my Voriconozole levels by increasing my dose.  After 2 more months of doing this they finally realized that I was rare yet again and metabolized Voriconzole so quickly we were approaching toxic dosing and still not in therapeutic range.  The Infectious Disease doctors changed to a newly released formulation of Posiconozole, my BOS pulm specialist agreed it might be smart to try dropping my Flovent to 1 puff twice a day instead of 2, and we had to move out of our house.

3 WEEKS later I was in the hospital for a Stenotrophomonas infection and the bronch then showed I had cleared the A.Terrace infection... 6 months of Voriconzole, 3 WEEKS on Posiconozole.  In those previous 6 months I continually brought up my concerns about Florida, my house, Flovent, Vori...but my doctors just reiterated to me the danger and importance of my continued use of the prescribed medication.  

I know I am not the best communicator and have even seen my physicians notes sometimes marking me as some kind of spazzy basket case.  Honestly it's the worst kind of feeling when it's as if nobody understands you. Why do they think this?  The only reason I've gotten from my doctors is that I am not concise enough and I try to let my doctors know EVERYTHING that's going on.  I realize that can be a problem and that there's simply too much that I keep track of that distracts them from doing their job.  It's tricky though...for example:


Bronchiolitis Obliterans (BOS)

Every winter since I started chemo at the end of 2009 I'd noticed a slight pain in my upper chest cavity upon deep inspiratory breaths.  This didn't really bother anybody as I had Bleomycin during my first line Hodgkin's treatment (ABVD).  This is known to cause lung problems and this was really pretty minor.  It persisted every winter and I brought it up but no worries.  During 2011 I got my autologus stem cell transplant and, probably in the beginning of 2012, I noticed I was really getting short of breath when I went on my walks.  I brought it up and considering the downtime I've had from the chemo before during and after transplant, the antibiotics, the GvH, addressing the hypothyroidism, the steroids, the difficulty in maintaining caloric intake...it takes quite a toll so we thought I was probably just deconditioned.  

I wish to God I had pushed harder and we had done a Pulmonary Function Test (PFT) at the time but there was already a lot going on so it slipped under the radar.  It continued to get worse and that winter, when that inspiratory pain returned, I noticed a wheeze along with it.  This prompted me to be more vigilant in my inquiry.  They sent me to a pulmonologist, did a PFT and discovered that my FEV1 (forced exhalation volume over 1 sec) had decreased to something like 36% if I recall correctly.  Along with the other numbers in the PFT the diagnosis was pretty clear; Bronchiolitis Obliterans (BOS).  

I don't blame anyone because you could say it was my fault for not being more persistent, or not noticing the severity of dyspnea (I find my body adapts to things or I get used to them so something insidious occurring over 16 odd months isn't as noticeable as a broken bone).  Or say my doctors were to blame for not catching the signs; it's extremely rare for GvH to cause BOS and there were definitely other more plausible explanations.  But it was missed and because of that it effects how I think of things.  It has made someone already sensitive to changes and side effects MUCH more so and it has not made interaction with my doctors any easier EXCEPT with the doctor that was with me when we were late on the BOS diagnosis (my primary doctor).  He understands me better than anyone and this event has only helped him take my concerns even more seriously and help me better explain myself to other doctors so they do as well.  

The Heart, The Thyroid And Lots Of Theorizing

This is an example of what happened after I was diagnosed with BOS (and then the Mycobacterium Abscessus and Aspergillus Terrace infections). I go in and say, "Hey doc, my heart has been feeling weak for a number of months."  He ordered an echo, an EKG some bloodwork and even a consult with a cardiologist.  That's above and beyond! With my luck though we didn't find anything but something in my left ventricle that is common in patients that have had chemotherapy; nothing of concern I was told.  Something popped into my head about previously reading how the Thyroid is important in heart health and I bring it up and a consult is scheduled with an Endocrinologist so I can express concerns about how maybe my T4 only supplementation (synthroid) might not be enough for me. I had been on thyroid supplementation since it was discovered I had hypothyroidism about a year after my stem cell transplant (very common so make sure you regularly check your TSH levels if you get one).  During this time my doctors at the NIH, on a hunch, discovered that after my years on prednisone* my adrenals were not making cortisol. 

To oversimplify, you need cortisol to convert T4 to T3 and both (along with others) are closely linked to testosterone.  My bloodwork showed low T3, low TSH, high T4 and low testosterone.*** Since this was the same time my doctors found zero cortisol in my blood we started hydrocortisone supplementation and those numbers even out a bit but my heart still "feels weak" with the left ventricle explanation not getting any attention.  So to me I'm thinking about how all these hormones are important in regulating themselves, converting one another into needed chemical formations and I  start to think that, as little info as I seem to be able to get out of my Endocrinologists and online about even the FUNCTION of T1, T2, their subgroups and calcitonin I figure maybe there are other things that I'm not making that might help optimize my thyroid supplementation.  

Sad thing was the only thyroid related symptoms that the Endo's would consider were that my testicles were perpetually freezing cold and crammed up into my perineum, my hair was thinning, I was always tired, and often depressed/apathetic.  The hair thinning and fatigue often being attributed to GvH and depression/apathy to pretty much anything from predispotion, medication, situation, etc..  I read about dessicated thyroid which is extracted from pigs and contains all of the same hormones that the human thyroid makes.  After many months of pestering people I get a prescription and find an Endo that will work with me in trying this "experiment."  My thyroid numbers varied a bit as we go from Synthroid (T4 only) to Armour (dessicated) but that's actually expected with dessicated as it historically doesn't give as consistent bloodwork as T4 only supplementation and is one of the main reasons it's not used so much.  I notice in a few weeks however that my testicles got a little warmth in them and they started to relax.  About a month later I feel a little less...weary of dealing with being sick and tired. Maybe a month later I noticed my heart stops "feeling weak."  Bonus! Months after that I had to do an Echo again to test for a PFO because I was having hemiplegic migraines and there is no comment about my left ventricle… 

Those were just two examples of things that have gone on in trying to get this body healthy.  Symptoms brushed off versus symptoms deeply analyzed.  I could go on and on with examples where I've been overly concerned about something that ended up resolving on its own.  On the other hand, I just learned this last Friday I might have another problem that's gone on for too long and might become another very serious problem because I let my doctors assuage my concerns with their experience.  

That's one side of the coin in making decisions about treatment and it segues into the other side with a specific drug that I and my primary doctor were thinking of trying to combat both my GvH as well as the BOS.  

The Other Side Of The Coin



My primary doctor had recently been to Italy were he had been told how they have empirically seen good results treating BOS with Rituximab.  No studies to support it yet though.  I did a little research on it and read about how it has been known to cause pulmonary fibrosing, albeit very rarely.  I asked my primary about it and he actually had one patient years ago that had this reaction and died because of it.  This, obviously, bugged me.  

I was blessed to go to my primary because he had personal and extensive experience with a new chemo that we used when I relapsed after my transplant.  He is by far the best doctor I've worked with in the last 6 years and his experience and opinion has become very important to me.  But, on this course we disagreed.   I wanted to double check all that we could before trying it out and asked if he could find out if there was anything out there that showed patients with previous lung disease like BOS, COPD or CF that increased the chances of pulmonary fibrosis. 

This is where that article on the FDA comes into play.  There wasn't any research available to my doctor so he contacted Genentech, the manufacturers. They have people to help find this kind of thing out.  My primary said they sort of gave him the run around for a bit and finally sent out a representative to talk with him...where nothing was accomplished.  More talk, no numbers and no data.  I went up to the NIH for another followup on some of the trials I'm on and spoke with the BOS specialist up there and she informed me that they've seen the opposite - no benefit using it versus the methods they use (flovent, azithromycin and cingulair) to treat BOS nor for the prevailing GvH symptoms that I had (eyes, mouth, musculoskeletal and possibly neurological).****


It's All Madness!

So what all of that kerfuffle above is trying to say is that your treatment, my treatment, is all based upon a mix of scientific data, conjecture, gut feelings and experience.  Experience of the physicians as well as the patient.  What are you supposed to do when you're unsatisfied with what a doctor has told you and you tell them you want a second opinion.  If they're worth their salt they'll encourage it but what happens when the two opinions you get differ drastically?  What if you were only unsatisfied with the first doctor because they were in a rush and you felt they brushed you off but TRULY (and there's no way to actually KNOW this) they had the right course of action for treatment?  That's why I've made such a long winded post.  I figure the best way I can help is to show you what I've done and then you can make a decision. 

So, what do I do?

I pray.  A lot.  I listen to my body and even if there's some ludicrous idea that pops in my head I will absolutely investigate it (only ONE of my doctors believes that chocolate seems to have had an effect on my Liver Enzyme's because when my GvH was bad I had a hunch, I told him my suspicion and we tracked it).  I try my best to listen to what my doctors say even if my first impression is that it makes absolutely no sense and wait to go online to find out if indeed, they made no sense.  I do research until I feel satisfied with the course of action and I realize that 90% of the time I WILL NOT LIKE the course of action.  I ask lots and lots and lots of questions and come up with lots and lots of theories about how things might be interacting (it's surprising how on the mark we as patients can be about what's going on with our bodies if we just take note and think). I thank God every day for the things I can still do and what He's gotten me through.  I make bad decisions sometimes.  I have become an arguable degree of neurotic about many things. Knowing my doctors are fully aware of my history, my reactions, my concerns and my stubborn determination to do what is necessary, probably falls under that neurosis.  I apologize a lot for being difficult, both in my diseases and interactions.  

I remember that my doctors are human beings and every human being poops. And then I hit play.  


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* I was on prednisone on and off for my Graft vs Host.  Mostly "on" sadly but as you have to ween off of it the doses were like a roller coaster. However,  I need to point out to anyone that gets BOS that I'm told prednisone does NOTHING for BOS but it does help with Cryptogenic Organizing Pneumonia [COP] which previously has been called Bronchiolitis Obliterans Organizing Pneumonia [BOOP] which is a misnomer.  Make sure your doctors are being very clear with you about this and that THEY know the distinction. I recommend getting in contact doctors at the NIH about their research that shows this.  There are great doctors in the Bone Marrow Transplant (BMT) area a part of the National Cancer Institute (NCI) with lots of BOS experience.  Be prepared to deal with differing opinions, treatment suggestions, and methods of care.  


** I say a few months for simplicity. These "few months" were after my entire Infectious Disease (ID) team was changed at the NIH and I was put on another clinical trial so I could have access to Clofazamine.  Interesting story.  Ya know I just wrote about how my doctors were overly concerned about the mycobacterium infection?  They originally told me that it was going to be at least 18 months of treatment because mycobacterium are really slow growing bacteria which means the antibiotics, as powerful as they are, are slow to act.  Despite this the ID doctor, about 5 months into treatment, wants to stop because of his concerns of toxicity (I still highly respect this doctor and am actually disappointed he's not still part of my care but you really can have "too many cooks...").  God forgive me, but I used a few expletives in trying to make sure my doctors understood that I had a very bad history of things coming back and wanted them to be absolutely sure this was the right decision. That I wasn't as concerned about toxicity as they were.  That I was willing to do whatever had to be done.  The only other person with BOS and M.Abscessus that they had seen had died from the combination and this was made clear to me so I didn't know why we were stopping.  Yes my CT was looking really good.  Yes my numbers were improving.  Yes I was breathing better.  But we didn't even do a bronch or a sputum culture to make sure it wasn't still present.  But I trusted their judgement and the hopes that my body would deal with the mycobacterium since, hey, that's what the human body is supposed to do, right?  And let's be honest, who wouldn't want to stop drugs that made you nauseous,  gave you migraines, and took up large portions of your day.  

Well low and behold, either because I was still on ineffectual Voriconozole and A.Terrace kept growing or the mycobacterium, without the presence of antibiotics, started growing again, I got worse.  They did a bronch, confirmed both were still there and declared I had relapsed. THAT is why they changed my physicians around.  It might've been for the best? If you notice in that wikipedia article on Clofazamine there is this gem of a pubmed article.  I have skin, joint AND mouth presentations of GvH from my transplant.  One might ask, "why didn't they put you on this at the onset?"  Good question.  Those "concerns about toxicity" and their persistence that M.Abscessus was going to kill me if I didn't treat it seem strange that they wouldn't try this earlier instead of stopping altogether. Turns out I learned later that even my impassioned verbal language didn't get through to them because part of the reason they stopped was because those "concerns about toxicity" were just because I was relaying to them the side effects that I was going through.  From my point of view I was giving information to help them decide if I was on the best course of therapy yet somehow from their point of view I was a whiney patient or some such nonsense. Frankly, one of them just didn't like me.   

*** What are those? Basically TSH is the current gold standard of measuring thyroid.  By measuring TSH (the Thyroid Stimulating Hormone released by the pituitary gland) Endocrinologists are able to tell wether your thyroid is producing adequate amounts of hormone.  If the TSH is high that means it's sort of shouting at the thyroid, "We need MOAR hormones!"  Low means the opposite.  T3 and T4 are the main hormones measured if the TSH is off but they are not the only ones.  Testosterone plays a big part in musculoskeletal development and hair growth.  Interestingly I could never find any information on HOW the thyroid effects testosterone but in every paper or study I found it just stated as fact that hypothyroid patients often also have low testosterone.  


**** In the above example we are STILL trying to figure out the best course of action.  That recent discovery was an ulcer biopsy on my tongue that took 6 weeks of gene studies at the Mayo in Rochester, NY to get a general idea that it might turn into Post Transplant Lymphoproliferative Disease (PTLD) but we're all hoping it won't.  Because of this pretty much all my immunosuppression is under more scrutiny.  The alternate drug we were considering to Rituximab was Rapamune, a drug I had taken previously to great effect.  The benefit being that Rapamune has possible anti-lymphoma properties that would hopefully combat the possible lymphoma that might arise from PTLD while it's ability to help fight fibrosing might help the BOS.  But the lung toxicity it can cause is markedly similar to the COP I already have that I can't take prednisone for because of the risk of infection.  I am currently pursuing stem cell regeneration though I feel a bit on my own.  I want to get some of the doctors like Dr. Jörg C. Gerlach who did the initial development of the SkinGun.  I'd love for them to talk with some of the doctors involved in pulmonary stem cell regeneration and see if there's any common ground they could find in figuring out how to regenerate damaged or scarred lung tissue.  This is my goal.  I just have to try and bring them together...or something. 
______________________________________________________________

Some good quotes.


"But as a growing body of research shows, technical errors account for only a small fraction of our incorrect diagnoses and treatments.  Most errors are mistakes in thinking.  And part of what causes these cognitive errors is our inner feelings, feelings we do not readily admit to and often don't even recognize" - Dr. Jerome Groopman


"Patients and their loved ones swim together with physicians in a sea of feelings.  Each needs to keep an eye on a neutral shore where flags are planted to warn of perilous emotional currents. - Dr. Jerome Groopman


"To be neurotic – what good can that do? ... I myself have known more than one person who owed his whole usefulness and reason for existence to a neurosis, which prevented all the worst follies in his life and forced him to a mode of living that developed his valuable potentialities. These might have been stifled had not the neurosis, with iron grip, held him to the place where he belonged" - Carl Jung


"And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of his Spirit who lives in you." - Romans 8:11


"I know the pieces fit, cause I watched them fall away" - Tool


"Failure is the best way to learn" - Kings of Convenience


A little vulgar, but pretty much. XKCD 931. And that's the lucky ones that don't have INSANE side effects from treatment or the secondary cancers that the treatment causes...


edited by Henry Toland

2015-02-14

Let's do it Together!

So...  I don't much like attention.  That's strange as a musician right? Gotta get up and play... So I haven't much wanted to bring attention to myself and all that came with cancer; treatments, side effects, and all that.  It sucks.  Everybody knows it sucks, or at least has a vague understanding that it sucks which is really based on how much they measure "suck" in their own lives.  The wall street banker who kills himself after losing his wealth probably has a totally different opinion on what *I* would consider reasonable cause for throwing oneself off a roof. =/

So...  I've never felt much like talking about the last 6 years in detail because it seemed selfish.  Who wants to hear a bunch of complaints? I don't much see the point in complaining because it doesn't seem to change anything.  I thought it best to just get past all of this and help people best by getting healthy again.

So...  I keep getting told by nurses and friends and strangers and role models that I should share some of what I do to deal with this mountain of garbage that's been thrust upon me.  I keep being told that what really might help other people isn't seeing me healthy but seeing what I do, what I go through, what all those treatments might look like, and having an inside look into at least my side of the unknowable future of treatment.

So... In Exodus 14:21 when Moses stretches out his hand The Lord sends a strong wind from the east all night to split the red sea.  My doctors, my mom and dad, my friends, my medications, the strangers that support our family, the prayers from churches, the constant support from relatives....this is the east wind that God has been sending me and I want to share that; when a doctor tells me I'm going to die and the cancer is going to kill me, yet I'm still here 3+ years later.  When they prepare ICU to accept me because my lungs are so bad, but I start breathing on my own without oxygen supplementation.  When they say I'll never clear an infection yet I do. I might sound crazy to a lot of you out there when I say that I know God is with me in all this but at the center of the Christian message is Christ who conquered death THROUGH it, not by avoiding it. By the Grace of God I am who I am and these years I've gotten more stubborn, angrier, more depressed and apathetic....but that east wind is always there for me; in my mom who carries me, my friend Henry who spends time with me, finding a new drug that heals me... So to anyone that doesn't share my faith I hope you don't turn away and we can learn from each other's experiences and maybe figure out new ways to deal with our respective diseases!

So...  Why am I writing this now?  I think part of it is the loss of a friend recently, Cameron Huster Beck.  You can read a good write up here on her life.  She passed away recently.  I knew her from when I sang in the choir at First Presbyterian in DeLand.  When she heard about me getting Hodgkin's she reached out and offered encouragement and let me know about her own struggles with Leukemia and we would encourage each other in our walk with God; trying not to be to each other like Job's friends in the Bible, but give each other an outlet and say, "This really sucks!!! I know God has a plan but this really REALLY sucks!!!!"

She was in the hospital recently and reached out to me to see if I had any advice and we wrote back and fourth a few times before, Ironically, I had to go to the hospital the following week for similar pulmonary problem. I never got the last message she wrote me until I was released and she was already at home with God...

God put in me a very strong will to live (read; I'm stubborn as a mule).  I've always felt I was born to help people and one of the worst feelings these last 6 years is feeling totally useless.  So, for Cameron and anyone else out there whose bodies decide to go homicidal, I want to start writing down the drugs I take, the diseases I have, and the experiences of it all in hopes that it might help someone out there maybe beat the terrifying odds the doctors give you and maybe turn your face towards that east wind!

If you happen upon this page or any other just throw a comment down and I'll be glad to write whatever I can on the matter :D


2013-05-02

When I called Saul.

A few months ago I once again found myself reading Genesis.  I've been working my way through the Old Testament and something has been sticking out like a sore thumb.  I guess it caught my attention with Gideon.  Is starts in Judges 6 when God visits Gideon.  It's kind of strange reading through and reminiscent of when Jacob wrestled with God.  I get the impression that the angel of God that is visiting Gideon is getting a good laugh on the inside because Gideon keeps asking for signs to make sure it really is God, asking Him to hang around and wait for him to come back.

A bit later Gideon summons a bunch of other guys to knock heads of the Midians that were at the time ruling over the Israelites (IIRC, feel free to call me out if I muddle things up a bit) and agains he wants a sign from God to make sure he's gonna survive his future head-knocking adventure.  2 nights he asks God to moisten either his mat or the floor, leaving the one not moistened dry.

Fast forward to 1 Samuel to just after Saul is appointed King and his son Jonathan for some reason gets an idea to go attack the Philistine camp with just his shield-bearer. It's actually pretty amazing.  Jonathan's faith was such that he says, "Nothing can stop the LORD from saving, whether by many or by few." (1Sam 14:6).  So here he goes and before he goes up he lays out a plan to see what God has in store.  If the Philistines that he is approaching up the cliffside call Jonathan and his shield-bearer up to them Jonathan is sure this means that God has given the entire Philistine army into their hands.  The two of them.  @_@

Then fast forward to Jonathan and David coming up with a plan to find out wether or not Saul wanted to kill David.  Jonathan would find out and then fire off a few arrows and depending on what he tells his servant (crazy that he has a servant to go fetch his arrows...) David will discover what Saul's plans are. [[aside - The way it's delivered it seems like David immediately approaches Jonathan after he tells his servant that the arrows are too far to fetch which makes me wonder why in the world they came up with that plan in the first place. Ideas?]]

So I've been curious how I might apply that to my life.  But not because of David, Jonathan, or Gideon.  Partly, but the real catalyst for this desire is Saul.  Yup. The guy that goes psychotically jealous, flip-flops back and fourth between loving and hating David, acting foolishly and repenting; the guy seems like a real basket-case.....sounds a lot like me.

So what's the deal with Saul? God picked him and told Samuel to anoint him King because the Israelites wanted a King and to be like everybody else. In the beginning The Bible says that the spirit of God was with Saul and he seemed to be doing things right.  But then he saved some cattle, some sheep and fat calves - "everything that was good" and God was sore displeased because He said to wipe out EVERYTHING.  [[[I've talked before on the sovereignty of God  and His knowledge/Justice on here (I think anyway...) but fire away if you, like me, struggle when you read these kinds of God given directives. ]]]
Saul says in his defense whenever Samuel calls him out for keeping the livestock by saying, "The soldiers took sheep and cattle from the plunder, the best of what was devoted to God, in order to sacrifice them to the Lord your God at Gilgal.” (1Sam 15:21)

Which sounds like Saul was doing what he thought would be what God wanted, but Samuel expounds a bit more on what God delights in from us:


"Does the Lord delight in burnt offerings and sacrifices
as much as in obeying the Lord?
To obey is better than sacrifice,
and to heed is better than the fat of rams.
For rebellion is like the sin of divination,
and arrogance like the evil of idolatry.
Because you have rejected the word of the Lord,
he has rejected you as king.”



Here Saul breaks down and admits, "I was afraid of the men and so gave into them."

I guess this sticks out to me more so because of a recent sermon I was listening to by Mac Brunsen.  He brought up the connection of, and it's a bit hazy now so forgive me for the broad strokes here, our design and our tendencies. That because God made us to be in relationship with Him and to worship Him, but we are still in this squishy body partly separated from Him and intensely looking for ways to pleasure ourselves, we can often make the mistake of creating idols but with the intent to please God with them. I believe the quote was, "make our idols look an awful lot like Jesus" which immediately sends my mind to that quote in Matthew 7:


 "On that day many will say to me, ‘Lord, Lord, did we not prophesy in your name, and cast out demons in your name, and do many mighty works in your name?’ And then will I declare to them, ‘I never knew you;depart from me, you workers of lawlessness.’

Terrifying.  Maybe this is what happened to Saul.  Maybe the melancholy, the rage, the bi-polar emotions he lived with were God taking his hedge of protection away and letting all "the fiery darts of Satan" plunge into his mind.  All because he tried to make what he himself wanted, pleasure of his fellow men, to be what God wanted and at they weren't really the same at all.

Those are things I've been thinking about anyway.  Of course it's balanced by Matthew 16: 1-4:

And the Pharisees and Sadducees came, and to test him they asked him to show thema sign from heaven. 2He answered them, “When it is evening, you say, ‘It will be fair weather, for the sky is red.’ 3And in the morning, ‘It will be stormy today, for the sky is red and threatening.’ You know how to interpret the appearance of the sky, but you cannot interpret the signs of the times. An evil and adulterous generation seeks for a sign, but no sign will be given to it except the sign of Jonah.” So he left them and departed. (a good commentary on that bit here)

Outside of that I'm working on a bunch of music.  I actually might have, assuming I can finish them, an album of material to put out for my soft stuff.  Oh, also big news is that I changed the name of Pissing Graffiti to Forgetting To Fall which I wholeheartedly like.  Can the heavy and soft stuff coexist under that Moniker? Who knows.  Still playing around.  But I've got some digital heavy stuff, some proog-rock heavy stuff, and some soft stuff all brewing.  God willing it'll reach a state where you guys get to hear it too :D
This is me lately =(



2012-12-20

a, b, and something...maybe c?


I was just reading Hebrews chapter 2 and this verse stuck in my head.  One of those sticky readings where you feel like you're not understanding what you're reading so it churns about in your mental regions repeating itself.  I started at this verse and read it over and over again for some reason and then something clicked.

I have been wondering about Communion for a while now. "This cup is the New Testament in my blood, which is shed for you."  Seems gruesome.  I mean why have sacrifice at all? Why do tribes the world over feel the need to sacrifice to some deity so that their sins will be forgiven, or mercy be shown, or the sun rise, or crops be fruitful? Let’s assume:

(a) - There is a metaphysical existence beyond the physical one we know about.
(b) - There is purpose to our lives.  

There seems to be this void in life that desires learning, or contributing, or being a part of something; regardless of that something having been identified or not. It strikes me that there has to be a consciousness in order to attain (b).  So (b) wouldn't really be a problem, or question, or void, if it weren't for our consciousness.  So:

(c) - There must be consciousness for (b) to be found.

[ a bit of © explained; I say “found” as it pertains to “life” because I am talking about the actions, intuitions, conclusions and whatnot of Human beings; it is yet to be discovered if rocks have the same existential crises that we do. If one day we discover that earthquakes are what rocks do in order to satisfy this sense of bloodletting, so be it.]

Now, Humans have a tendency to want to be in control.  I know I want to be in control of a situation and hate it when things go awry. People get sick and, "hodgepodge!" People get stabbed and, "Why the heck is this happening?!?!" People get evicted and, "this sucks.."  Whatever "should be" train you're riding there is a dire sense of wrongness when it is derailed and death tells us this catastrophe is unavoidable.  It's arguable then, that if (a) were to exist surely it must be trying to reinforce (b). This leads us to conclude that:

(d) - (a) has or has had some control in setting up © and it’s relationship to (b).

Losing control however seems to often be regarded as one of the best things for (c) to attain (b).  

"The discipline of suffering, of great suffering - do you not know that only this discipline has created all enhancements of man so far?"" - Nietzsche

This seems to ring of (b) not only being a requirement in (c) but something beneficial.  So if (a) seeks to point (c) towards the realization of (b) we can, I believe, safely conclude that (a) is not indifferent to us, but seeks our betterment. Like a teacher with their pupil, (a) has used (d) to initiate (c)'s attainment of (b). It feels safe to say:

(e) - (c) will return, or enter, or interact with (a) after death.

To what purpose are we to be improved upon if not (e).  To that end death becomes to (c) not an end, but beginning or a change of state akin to moving from sleep to wakefulness.  

Now that's a whole lot of backdrop for me reading Hebrews chapter 4.  But it has a purpose.  The verse that specifically stood out for me was 14:

"Forasmuch then as the children are partakers of flesh and blood, he also himself likewise took part of the same; that through death he might destroy him that had the power of death, that is, the devil;"

Let's ignore the bit about the devil having the power of death for now as it gets a little deeper and I've yet to really think much about his place - as of now it's more or less just the required source of loss/suffering/death. What initially struck me probably wouldn't have been possible if it weren't for an earlier realization that sometimes translations are strange as anything.  I don't know the source, but this is oooooooold language.  I read stuff just two centuries old and get confused.  Multiply that by ten.  So a lot of things I've heard time and again are almost needlessly convoluted.  That first part here is just saying I am born of my parents.  Their blood and flesh made my blood and flesh.  And it was this that suddenly hit me.

If (a) created death as the door that allows for (e) then it would make some kind of sense that (c)'s inherent desire to attain (b) would lead to blood sacrifice;  knocking at the door of death as it were. Why would (a) implement such a thing then? Only if (e) exists and death is not as final as (c) feels it is.  Of course the obvious, “WHAT?” for me is that if someone came to the conclusion of coming nearer to attaining (b) and “comuning” as it were with (a), why would that person not just shed their own blood? I imagine it would have something to do with our lacking (b) and the void of filthiness that it leaves in us.  We would want something that isn’t dirty to go before (a) otherwise it would feel profane; our blood would feel inadequate as opposed to something pure.  Something that didn’t have the vacuous pit as found in people.

My realization as it were: The communion is in one sense me reminding myself that I am not of this world.  That while I HAVE blood and flesh, I am born of a new "blood and flesh" that is part of (a), and (e). In Mark 3:12 we have Jesus saying, 

“If I have told you of earthly things, and ye believe not, how shall ye believe, if I tell you of heavenly things” 

That speaks to me that the flesh of blood of Christ is, in classic Biblical nature, both literal and metaphoric.  Literal in that Jesus’s body was broken, and His blood was shed; metaphoric in that the Communion we partake in is indicative of a spiritual correlate.  So, the door that is between (c) and (a)/(e) is now open because it's maker, (a), took on the ABILITY to die with, alongside, and for, (c).

How’s THAT for needlessly convoluted! :D Let me know if any of this sounds totally heinous or absurd or if I’m just real off the mark. It happens.  I’ve been thinking about starting to write posts where I go through explaining how I found out I was wrong.  That’s kind of where most of this comes from but maybe a more direct :I started thinking this way, read up on things, discovered I was wrong.  Yay for learning!” +nathan

Love of pickles! Happy Merry Christmas Year!