In the event that you happen to drop in, Jhaysonn passed away July 13th 2018.  If you would like to see about his life please visit jhaysonnscure.com

Muscles! Yea! Let's keep 'em!

Let's talk about Graft vs. Host and muscles/tendons for a bit. One of the things that I found to be really annoying after my stem cell transplant was the way that GvH would attack my muscles and tendons. It was as if every muscle in my body were trying to put me in a fetal position. That position was the only time I didn't feel I was actively fighting against my muscles. On top of that were the cramps. After I would be in bed for a period of time (usually around 4-5 hours) I would start getting intense cramps in any muscle from my knees downward, most of the time in my feet. The metatarsals and philanges (Regina Philange! lol) would sort of roll under each other because of the muscles that would cramp and I would have to get out of bed and stand up, walk around, and stretch for 10 minutes or so for them to go away. I can't say for sure whether the tendons were put under extra stress from the muscles constantly contracting or if they also were part of the problem but from what I understand it's a little of both. The GvH attacks the tendons as well and they start to tighten and range of motion (ROM) is reduced which causes muscles to tighten (as they too are attacked) and it's just a back and forth downward spiral.

If I were to do too much exercise in one day (walk too much, do too many pushups or squats or rearrange my room, it all depended on how badly the GvH was flaring) I would end up paying for it for up to a week. By that I mean the muscles would get tighter and the tendons would feel like something was going to snap. It was all pretty painful but I guess at this point it was more annoying and worrisome because there was this fear that something might ACTUALLY snap. I feel I should say this though: It is a different feeling entirely than one you get from a good workout.  I used to workout 2-3 times a day before I went to South Korea. Bodyweight, gymnastics, crossfit, weightlifting. I loved working out and I know muscle soreness.  GvH involvement in the muscles/joints/tendons is something that does NOT feel like a good muscle soreness. It feels very wrong and irritated and tender and inflamed and painful and...like a 10 year old rubber band that you know you can't trust and is gonna snap.

So one can imagine it's hard to stay active with this. You NEED to but the level of intensity is going to be based around what your GvH basically "allows" you to do. But you have to keep active.  Your muscles are really important.  Your chest muscles are important in helping you to breath. Your leg muscles will help with circulation which will help to prevent or lessen any peripheral neuropathy you have as well as play a vital role in recirculating blood back up to your heart, against gravity (that's no easy task). You need to keep as much of your ROM as possible too. I remember seeing (and can't find a picture so I apologize) of a cadaver of someone that had a shoulder injury that meant limited ROM for the rest of their life and the reduced ROM, unexercised shoulder had what looked like a massive amount of cob webs wrapped about from his pectorals all the way to the back trapezius muscles. This was not the injury but secondary to it caused by immobility and disuse. Just imagine that grey stuff growing inside you. INSTANT motivation @__@

Since I found myself not being able to do much, I got in the habit of just doing...often. I would get up and pace or do pushups or squats or stretch different muscle groups. I would do shoulder shrugs and arm circles and twists and I would make sure I would go on walks as much as possible (also because I love walks so why wouldn't I). I would make sure and rotate my ankles and wrists as much as possible and my neck. It's going to be frustrating too because you are going to use your muscles and they will rebel, but the stretching will help a lot and it will even help with the nighttime cramps.

There are a couple other things I've found to help with the cramps. Stretching yes, but even more than that was eggs. Yea, can you believe it? Here's the thing.  You're probably on a lot of antibiotics. You've gone through a transplant so your entire digestive track has sloughed through your colon and had to start repairing itself while ON said antibiotics. They probably won't let you take any probiotics either right? That's a setup for some serious gut permeability and that's where a LOT of autoimmune diseases can creep up. Food particles that should be broken down more or not even absorbed are getting into our lymphatic systems and blood. The way it was described to me was that some of the egg proteins cause autoimmune responses so I figured I would cut 'em out and see what happened.  Sure enough my cramping went down dramatically.

Another thing that might help a little bit with cramping are these injinji toe socks. Something about the compression seemed to help a weeee bit with cramping at night.

And I know if you're going through this you're reading what I'm saying and it probably feels impossible. We do all this work and yet STILL we have to watch our bodies wither away. We do all this work and it just makes the cramps WORSE. What's the point right?

Hope. You just have to have hope that one day it will get better.  Maybe you have someone in your life that motivates you to keep going.  A wife. A son or daughter. Someone that looks in your eyes and loves you. That can make all the difference.  They need you. Do it for them. You NEVER know what is coming around the corner.  Your life changed in one day when your doctor told you that cancer was eating away at your body right? Who's to say that one day you won't wake up and your life will change again? Do you want to give up and have to start further down the ladder than you would have had you kept fighting?

If you're a Christian, maybe you hang onto those verses like in Romans 8, "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Life is infinitely bigger than we can understand. Our lives touch other people both strange and familiar, near and far. We may never know how, but we can try to make sure it's a good touch, right? 

I'm not saying I did the best because I could've done better. There were a lot of weeks where The Deeps would just win out and I would be congratulating myself just for getting out of bed. It's a crazy hand you've been dealt but we get to play the game, right? It's been 4 years since my transplant and my cramps are FINALLY gone. They started back up recently when I had to reduce my immunosuppresant (Cellcept) and increase dexamethasone mouth rinse, but they're not bad. Usually just a switch in position if I get them and I'm good. My muscles are actually allowing me to workout again and get stronger. So hang in there. You never know what is coming around the bend.

_____________________________________________________

Good Quotes:

"Pain is weakness leaving the body" - Marines? 

"In the night my hand was stretched out without weariness;

            My soul refused to be comforted."

.....

"You have held my eyelids open;

            I am so troubled that I cannot speak."

......

"Then I said, “It is my grief,

            That the right hand of the Most High has changed.”

       shall remember the deeds of the LORD;

            Surely I will remember Your wonders of old." - bits of Psalm 77 

__________________________________________________________

Good Music:

I Need My Girl by The National

This Will Destroy You by War Prayer

Roll Away Your Stone by Mumford and Sons

Edited by: Henry Toland

bumpin' into errythang @__@

Since my last post went heavy into things I've realized I haven't given much concrete details on the hows and what's of what might help other people out there with similar symptoms.  SO! Here doth we begineth un grand travail 'bout dem eyezballz.

We're gonna go into eye care for when you have dry eyes.

The thing about dry eyes is that it, like everything else you're probably dealing with, sucks. C'est la vie. You've still got your eyes so lets try and keep 'em in your sockets as long as we can! First off though, I'm not eye specialist and you really should see an Ophthalmologist to make sure everything is covered. Honestly the eyes have, for whatever reason, been this source of knowledge that my brain just doesn't want to think about.  I research Meibomian Glad Defect and the name just sounds so ridiculous my brain shuts off (MBD is basically where the sebaceous glands in your eyes stop producing that oily wonder that sits on top of your tears to prevent them from evaporating away. No tears=dry eyes).

So I'm not really going to go into talking about all the different kinds of dry eye, that is something that you and your Ophthalmologist need to discuss (and you can find lots of information to talk with them on ocular GvH here). Everyone seems to be different in terms of what works for them and what demands must be put on their lifestyles. Some people get off using Restasis and they're good to go. Some people might have great meibomian glands but just not make tears, so lots and LOTS of tear replacement drops are available. I write this in case you, like me, have difficulty wading through what to do. 

First and foremost, the single most effective and amazing solution EVER for dry eye. Bobster Bugeye motorcycle goggles.

I could barely deal with getting out of bed before I found these guys. I don't make tears at all, my meibomian glands aren't working right, I've got blepharitis, and boy did these guys solve so many issues.  I can't recommend them enough.  I had these because a dear friend in college gave me his pair when we were moving and I just happened upon them at the same time I started to manifest symptoms.  They act as great moisture chambers as well as keeping the wind out (because when you're eyes are dry even the wind generated from walking forward is painful).  I subsequently went on a search to find more reliable and longer lasting options out there but having spent probably close to 200 dollars in orders and shipping returns, I gave up.

Now the thing about the Bobster Bugeye goggles are that they're cheap.  8 bucks lasts me 2 or 3 months.  The problem is the foam - it's not meant to be worn every waking hour so the sweat (I live in FL) deteriorates it.  But 8 bucks every couple months is fine by me.  I DO NOT recommend getting the "2" version which is the same design but with interchangeable lenses.  Sure it's nice, but it's more expensive and you're gonna end up replacing it in the same time frame.  I have two sets, one clear and one black for when I go outside (because sunlight is harsh harsh harsh and the black doubles as protection after my ECP treatments). The black ones are only for going out so they last much much longer (depending on number of doctor visits).

On the drops, the gels, and the in between gunks that you have to put in your eye.  Here's where things get annoying. It seems there are two groups; the people that don't react well to drops with any kind of preservative in them and those that do. So if you try an artificial tear product in one big bottle and it causes a lot of burning and reddens your eyes you probably aren't good with preservatives.  The site I mentioned earlier recommends using preservative free drops however this was never discussed until I told my doctors that I had found a better response to the individual vials and learned they were preservative free and this was a common complaint. Just saying you might want to start with preservative free and not waste your money.

This is ironic though because there are a number of topical steroidal solutions that they might recommend that aren't even made in preservative free vials.  The go to prescription drop these days is Restasis.  It's great in that it works for a lot of people and probably helped me in the beginning but that doesn't mean it's always the best.  I was blessed to be able to take Restasis in the beginning but I found later that even though they were preservative free, I did MUCH better throughout the day without them.  Stopping helped me on two fronts as I later developed cataracts from using Restasis and Prenosolone drops.

So onto artificial tears. I use Refresh Plus throughout the day (and the best way to keep them close and not be another frustration is to keep them in cigarette cases! They work great and there are tons on amazon to chose from). I can go through upwards of 5+ vials a day when it's real dry.

There are also gels that you should be putting in your eyes when you go to bed. The BEST I've found is Refresh P.M. Only two ingredients and unlike all the other gels I tried it has minimal "congealing effect" as I've come to call it.  With the gels and thicker lubricants, if you're not making tears, they can end up kind of drying out and become really painful and not very helpful. The only way to keep them wet is to keep using lots and lots of artificial tear drops. This is still the case with these and why I don't use them during the day but only at night as my eyes are closed (mostly [1]).

Once a day, usually in the afternoon, I put a drop of Refresh Celluvisc. It makes everything blurry but this is an inbetween; not a gel and not a "tear." It dissipates quicker than the gel does but helps keep things extra moist. Some people need 2 or 3x a day and it wouldn't hurt if I could, but it still makes everything really blurry so what little reading I can do is no longer possible until it dissipates a little. Cooking becomes dangerous. So I try to put 'em in before I have to do something involving my sight. Usually that means after food is ready to eat and I'm just gonna watch Netflix. 

Now I have to say, you might notice it's all Refresh products. That's not planned or bias. That's literally just what has worked best for me and my eyes after going through DOZENS of different products from different companies.  I started a sheet where I would write down pros/cons of each of the products I went through.  Refresh just seems to make a product that works best for me.  Those are just regular Amazon Smile links, not referrals or anything.  Another product that I thought worked pretty well was TheraTears Liquid Gel but that had too much "congealing effect" for me.  Another good artificial tear was the Retaine MGD that I used for a LONG time. But then I found Refresh Plus that was not only better but I could buy it locally and not have to wait for shipping.

The other option that is almost a no-brainer to try was punctal plugs. They did this in the clinic for me in roughly 5 minutes. It helps some people, it doesn't help others. It works elegantly by helping to prevent your real or artificial tears from draining too quickly. I kept mine in even though I didn't notice a difference.  Who knows, maybe they started working later as I've gotten improvement over the year since I put them in.  They can be taken out easily enough at any time.

The other important thing to do is hot compresses.  My docs tell me this is pretty much the best thing to do for blepharitis (assuming yours isn't from some kind of infection). It's a great way to relax too so enjoy it!

I want to talk about autologous serum eye drops. Unfortunately, despite the evidence of them being very beneficial, not everyone has access to these. While it's easy enough to get your blood serum separated, it has to be done in proper conditions to avoid contamination (which could lead to serious complications). I'm currently waiting for Mayo Jacksonville to finish building their facilities to handle this which will be GREAT. Serum eye drops are supposed to have lots of nutrients, growth factors and other good stuff to help out dry eye in a big way.

Beyond that I've read a good bit about how androgens (the group of  "male" hormones like testosterone)  play an important role in people that get dry eye from other causes like Sjögren's Syndrome but have yet to see any applications in the world of ocular GvH. Beyond that, the few times I got through to people that were familiar with the benefit told me that it was very difficult to keep stable so they stopped production. Hopefully the future will see more of this, but it's worth bringing up with your doctor in case they "know a guy".  Here's an interesting article with some contact info if you're interested in learning more about this.

Hope some of that helps. Feel free to comment on what you've found works for your Ocular GVHD. Or if you have another dry eye condition like Sjögren's. 

___________________________________________________________

1 - Some people can have dry eye symptoms because they sleep without their eyelids closing completely and making a healthy seal. I did/do this slightly. Some people get relief by wearing eye goggles for sleep like this. I tried a couple different options but none of them worked for me because I often sleep on my side. Plus they just weren't very comfortable for me. I had better luck just getting a dry hand towel and throwing that over my eyes. But lately since I found that Refresh P.M. I haven't had problems with this.

___________________________________________________________

Good Quotes:

"As Jesus was approaching Jericho, a blind man was sitting by the road begging. Now hearing a crowd going by, he began to inquire what this was. They told him that Jesus of Nazareth was passing by. And he called out, saying, “Jesus, Son of David, have mercy on me!” Those who led the way were sternly telling him to be quiet; but he kept crying out all the more, “Son of David, have mercy on me!” And Jesus stopped and commanded that he be brought to Him; and when he came near, He questioned him, “What do you want Me to do for you?” And he said, “Lord, I want to regain my sight!” And Jesus said to him, “Receive your sight; your faith has made you well.” Immediately he regained his sight and began following Him, glorifying God; and when all the people saw it, they gave praise to God." - Luke 18: 35-43

"That though the radiance which was once so bright be now forever taken from my sight. Though nothing can bring back the hour of splendor in the grass, glory in the flower. We will grieve not, rather find strength in what remains behind." - William Wadsworth

Good Music:

Sigur Ros - Glósóli

Dream Theater - Fatal Tragedy 

Limp Bizkit - Endless Slaughter (yea I dig it. Feels like 3 Dollar Bill a bit)

The Deeps

I don't know how to write this post.  How can I focus my jelly brain enough to try and write something meaningful here? I don't know enough about this, even though I live with it almost all the time now. I want to help others who might have their bodies turn homicidal and force them to try a lot of intense medical intervention (DRUGS!) that might change the very way they think; but I'm not sure how.  If I'm honest I don't really want to write this because it feels embarrassing, it's not who I am, and I want to move on with my life.  Unfortunately I still have to deal with this, and even though I have a (temporary?) respite from it at the moment, other people might not and might need something like I did to help them say, "Hey wait... that sounds a lot like me!"

What am I talking about? Well my doctors call it depression so that's what I have to use when I deal with them, and I guess most other people, but it's not what I feel.  I actually don't feel much at all. I have the physical pain, the discomfort, the daily struggles and all that but I don't FEEL like I used to.  There aren't any moments in a day where I think to myself, "I want to do [x]."  It just doesn't happen. This non-feeling has built itself up over the years, as if taking the rubble of what I was no longer physically able to do and used it towards building this vast plateau of nothing over the last 3 or 4 years.

I wasn't able to quite describe this until recently. Many years ago I would talk with a close friend of mine about this general feeling of melancholy we shared. Being artists we both mulled over the idea that maybe it comes with the territory. Recently though I've been afforded a lot of time to think about things, read theological studies, and analyze these thoughts in a deeper way than over a beer. There have been moments , like flashes from a lightning bug, that would rattle me a little bit. Like when a  friend of mine, a physician, he agreed with my doctors telling me he's known I was dealing with "a bit of depression" ever since he knew me in college. I went to psychologists because I was told to and I felt so terribly misunderstood that them telling me I was depressed meant less than a foreign language to me. No, I told myself they were wrong, and while one was cute, generally not worth my time ^_^ (2)

But for some reason blog posts like Ally Brosh's kept popping up and I kept seeing Ted talks my friends would post.  Why did parts of me feel a little like what they were talking about? Why did some of those explanations make sense.  Not feeling anything...yea I can understand that. Dat fatigue; I can fall asleep anytime of the day. No I don't think terrible thoughts about myself but...wait actually I DO but they're... I mean they're not so negative they're just facts. I mean, I am in a pretty objectively worthless state. A drain on my family and friends. I don't really have much if anything to offer anyone what with my physical abilities limited and my mental faculties clogged up and congealed. I spend all of my days just trying to bandage myself up and survive all of this. I didn't FEEL like those were negative thoughts, I just saw them as the way things were.  But...I didn't feel much of anything so... is it the same as the people whose stories I learned? (3)

I think the turning point in helping me figure out how to describe this was when I was on Linezolid. It's this effective antibiotic but it's also got some nasty side effects. For me, one of those was a terrible worsening of feelings (that once again my doctor said he'd never heard anyone react that way). I remember being so tired, and I attributed it to the increase in diarrhea. I remember not being hungry, and I attributed it to not getting enough calories (because yes, when you struggle with calorie intake for long enough, not having enough energy to eat is a thing). Then I remember thinking often about the most painless ways I could make myself die with the various drugs I had at arms length.  That was starling. Even as I type it I know it sounds too dramatic. I can't stress enough that it wasn't. It was as normal as telling myself it was time to do my medicine again or eat or shower.  I didn't feel anything behind the thoughts, they just happened. And that's when things kind of clicked.

It came down to a quote often attributed to C. S. Lewis, "I do not have a spirit. I AM a spirit, I HAVE a body."  These 14 little words, I feel, have made all the difference in helping me to define what it is I've been going through.  It is my body that doesn't have access to motivation.  It is my body that has lost it's reward system.  It is my body that, once again, has decided to make life a little more difficult that need be by running these "facts" through my head all the time.  It is my body that seems hellbent on putting me in a box.

Think of it like this.  It's as if there is a light and a darkness. Spirit and body. Who God made me, and the lust, anger, pride, selfishness, and sin of my body. If I look back through my life it becomes clear that this darkness was always there as I felt it important enough to talk about sometimes, but it was a minor player. The moments of darkness were vagaries  that would play peekaboo and barf themselves out with a couple guitar riffs before disappearing again.

So when I would start thinking about the that good ole endless sleep I knew it was my brain chemicals being idiots again and I would think about The Hulk smashing trees or something. Or food.  Or I would just get up and watch Netflix.  If my brain is being stupid give it something else to do. And no I didn't feel guilty for not doing something productive.  At this point getting out of bed WAS productive.  If my brain didn't want to do anything, and I felt like finishing a movie was an accomplishment I would finish that movie and say, "Good job!" because hey, at least a little bit of my reward system kicked in.

I don't want to say that it was this body/spirit quote that gave me this...ability(?) but I have to bring it up because without it I wouldn't have been able to make the connection and put words to it all. I think this has been my outlook on things for years and years without putting words to it. It's a result of my walk with God.  I have always looked at how things ought to be, and since our bodies die, the universe is headed towards entropy, relationships fail, sin exists, it was clear that this is how things were not meant to be. But deep inside there is a part of me that DOES exist as it was meant to; as God wanted it.

So if you're reading this and suffer from depression but don't feel this way maybe you can use these words to think this way and it might help. I can't find someone to credit with this but there's a quote floating around, "The longest distance in the world is from your head to your heart." This is a battle for me because the last few years the heart feels dead while the head is at least rocking in a corner trying to shout at it to kick into gear. As a Christian myself, I can understand how someone might feel incredibly distraught to have to deal with all of these feelings and be left wondering, "what did I do wrong?" or "I'm a bad Christian" or other some such nonsense.  Don't worry, you didn't and you're not. It's just a body thing.  Jars of clay brah.  I won't say you should stop trying to draw nearer to God and leave it at that because some of the only times I manage to muster up a strong emotion or two is when I'm reading The Bible.  There are moments where I feel like God looks right at me and says, "It's ok" and I just about crumble. (4)

My friend made an interesting connection about this subject and said I should post examples of my music and you can hear the mental/emotional changes.  They're not representative of the only styles of music I would make but I'll post examples of things that I feel are representative of the majority of my mental states.

Before cancer:

During Stem Cell Transplant:

Graft Vs. Host a.k.a. "butter scraped over too much bread.":

So tell me your story. What do you do that helps? Anyone else deal with these kinds of thoughts?

_____________

1 - My good friend had a grandfather who was diagnosed with colon cancer and instead of traditional treatment modalities opted to treat himself with the Budwig Diet.  You can read up on how to prepare the main foodstuffs in her Diet Book and more on the theory behind it in this book.  I had a hard time finding anyone online that had any success with "soft cancers" like lymphoma or leukemia but there seemed to be more people that had success with the "hard cancers" like pancreatic, colon, breast, etc. More or less you cut out bad fats, and introduce tons of flax seed oil by making it water soluble; blending it with non-fat cottage cheese.

2 - There was ONE guy I saw up at the NIH who was a chaplain I think.  I don't remember how I met him but we setup an impromptu meeting in between my appointments. He was solid. Why? Because he didn't hand me printouts that talked about emotional release.  He didn't give me the same "change myself and understand where my feelings where coming from" impersonal answers.  He didn't teach me about Cognitive Behavioral Therapy.  He didn't do anything that normal doctors seem to do for people with depression.  Which is great, because I still don't think *I* have depression; my body does. He just listened to me and what I was trying to say.  He actually offered insight and understood things I was trying to express beyond just my words like some kind of probe. If he was wrong he used my telling him so to get a better understanding, not just come up with a new way to tell me I'm broken so here's how to fix it.

3 - On thoughts; I noticed these negative thoughts at the beginning.  I think I've always had pretty negative thoughts that I've used to try and be better than who I am. The whole "ought" mentality. I ought to be stronger. I ought to be smarter.  I ought to write better music. I ought to please everyone.  So this thing that I used to accept and use as motivation was now more of a source of apathy.  I tried to inturrupt those thoughts and substitute them with the good ole I Am Lovable And Capable (IALAC! was I the only one that learned that in grade school?) repetition but often that would just make me more tired, more angry, and more irritable...because it reinforced the negative thoughts to begin with.  So...I guess don't beat yourself up about it you respond to that modality too. Doctors will offer it as a way to help and maybe it helps some but I recommend this workbook that goes over why that is. I haven't finished it but it comes recommended by people I know.

4 - If you are a Christian reading through this highly recommend a few books that helped me understand a little more the concept of suffering, emotions, love and a whole slew of things I was forced to question during all this and how it could fit in God's plan.

• C. S. Lewis: 
• The Problem of Pain
• The Weight of Glory
• Bombshell quote from one sermon - "In speaking of this desire for our own far off country, which we find in ourselves even now, I feel a certain shyness. I am almost committing an indecency. I am trying to rip open the inconsolable secret in each one of you—the secret which hurts so much that you take your revenge on it by calling it names like Nostalgia and Romanticism and Adolescence; the secret also which pierces with such sweetness that when, in very intimate conversation, the mention of it becomes imminent, we grow awkward and affect to laugh at ourselves; the secret we cannot hide and cannot tell, though we desire to do both. We cannot tell it because it is a desire for something that has never actually appeared in our experience. We cannot hide it because our experience is constantly suggesting it, and we betray ourselves like lovers at the mention of a name. Our commonest expedient is to call it beauty and behave as if that had settled the matter. Wordsworth’s expedient was to identify it with certain moments in his own past. But all this is a cheat. If Wordsworth had gone back to those moments in the past, he would not have found the thing itself, but only the reminder of it; what he remembered would turn out to be itself a remembering. The books or the music in which we thought the beauty was located will betray us if we trust to them; it was not in them, it only came through them, and what came through them was longing. These things—the beauty, the memory of our own past—are good images of what we really desire; but if they are mistaken for the thing itself they turn into dumb idols, breaking the hearts of their worshipers. For they are not the thing itself; they are only the scent of a flower we have not found, the echo of a tune we have not heard, news from a country we have never yet visited."

• Mere Christianity
• Thomas Merton: No Man is an Island
• Viktor Frankl: Man's Search for Meaning

______________________________________________________________________________

Good quotes:

"Who am I?

They often tell me
I stepped from my cell’s confinement
Calmly, cheerfully, firmly,
Like a squire from his country-house.
Who am I? They often tell me
I used to speak to my warders
Freely and friendly and clearly,
As though it were mine to command.
Who am I? They also tell me
I bore the days of misfortune
Equally, smilingly, proudly,
Like one accustomed to win.
Am I then really all that which other men tell of?
Or am I only what I myself know of myself?
Restless and longing and sick, like a bird in a cage,
Struggling for breath, as though hands were
compressing my throat,
Yearning for colors, for flowers, for the voices of birds,
Thirsting for words of kindness, for neighborliness,
Tossing in expectation of great events,
Powerlessly trembling for friends at an infinite distance,
Weary and empty at praying, at thinking, at making,
Faint, and ready to say farewell to it all?
Who am I? This or the other?
Am I one person today and tomorrow another?
Am I both at once? A hypocrite before others,
And before myself a contemptibly woebegone weakling?
Or is something within me still like a beaten army,
Fleeing in disorder from victory already achieved?
Who am I? They mock me, these lonely questions of mine.
Whoever I am, Thou knowest, 0 God, I am Thine!" -Who Am I by Detrich Bonhoeffer
"He came to my desk with a quivering lip,
The lesson was done.
'Have you a new sheet for me, dear teacher?
I've spoiled this one.'
I took his sheet, all soiled and blotted,
And gave him a new one all unspotted,
And to his tired heart I cried.
'Do better now, my child.'
I went to the throne with a troubled heart,
The day was done.
'Have a new day for me, dear Master?
I've spoiled this one.'
He took my day, all soiled and blotted,
And gave a new one all unspotted.
And to my tired heart He cried,
'Do better now, my child.'" -Anynymous
Good Music: The Smiths - Asleep Orbital - Halcyon On And On NIN - Every Day is Exactly the Same Edited by Henry

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 Adcetris 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!

____________________________________________________________

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. Worst exacerbator or depression. Got me thinking all the worst thoughts and wore me out. The key for dealing with it was separating myself and acknowledging that it's just chemicals. I seemed to even out a few months after starting.

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.

___________________________________________________________

Good Quotes:

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

Good Music:

The Sound of Silence - Paul Simon and Art Garfunkel

Quiet - John Mayer

Edited by Henry