Home :), Perceptions, and Thanks (Day 27)

Phew. Finally home. Home home. Not just out of the hospital home. The real deal. And wow is it sweet. Feels just fantastic. I feel such relief. I feel like I finally made it. I’m home now and I’m still alive so in my heart its official.

Had sort of my final (although not final at all I have an appointment next week) appointment for this transplant process. I look good. I feel good too. Still shaky and tired and very beat up but good. As good as one would expect I think. They were confident with letting me go home although it was not really a discussion they just knew I was going home so basically treated me as such. I have to be on an antiviral and antibiotic medication for ONE YEAR. Wow I know, one year. They didn’t tell me why this is but is it really because my immune system can’t handle things for that long? Scary sort of. Everything with me seems okay though. My lungs still feel real beat up and next week when I go back I have to have PFTs (pulmonary function test) again to check my lung function. Before the transplant I was at like 92% or something like that, I’ll bet they see a bit of a decline again. I plan on really working the cardio though to strengthen my lungs and my heart. Doc said this was the best way to do it so I’ll probably start that this next week. I weighed in around 158 lbs today, so I lost about 10 lbs solid. Not too bad. At one point though I think I was down to about 153-154 lbs, so I think at one point there between my last day of chemo and the day I received my stem cells (basically during the 2 day rest after the chemo) I dropped maybe 12 pounds in 3 days. No joke. Remember me talking about being slimmed up? That was why. My body toasted itself in desperation. Amazing to look back at that in hindsight. Physically though I have nothing new to report. Nothing has gotten worse and my energy has come up another notch where I feel less fragile and a bit more normal.

Surprisingly though, my counts came back quite a bit lower today than last Tuesday (9 days ago). My white blood cells dropped from 11 to 4 something, and my platelets went from around 200 to like the 130s. Hemoglobin went up like a tenth. Not to worry though, doc and everyone else believe that my counts were elevated due to the gargantuan steroids that I was getting. So all that talk a few weeks back about me having superhuman bone marrow was basically just nonsense. I mean my marrow was producing, but the steroids were cranking my marrow to the max and causing the elevated counts. Now I’m way down on the steroids (only 2mg per day now for a few more days – remember I started at 140mg for 2 days) so my counts are shrinking back down. But believe it or not my counts are still above where they were before the transplant. My counts were pretty low before transplant (they think from radiation) so my baseline seems to be a bit lower because I’ve had my ass kicked so hard by so much chemo and radiation for so long. I do feel confused a baby bit though because I thought my marrow reset itself thus would give me higher baselines. But then at the same time, it has not even been 3 weeks since I’ve had any count showing up so my marrow is still very very young. Its almost just too much to think about, and I’m so tired of thinking about all of it that I basically am not going to think about it. I feel good, all my numbers are still fine and my gut tells me everything is fine. So I’m not going to worry about it past this post unless something drastic shows up in following bloodwork, which is scheduled Monday here in Erie, then next Thursday back in Buffalo. I’m just going to hand it over for a bit, take a vacation.

Speaking of vacation – I am now officially vacationing somewhere else now: Erie. MY ERIE VACATION.

Just kidding. Sort of. I say this because this evening feels like a vacation in the sense I am so happy to be home. I’ll probably feel like this for a few days, then reality will set back in, and I’ll get used to being back here, and it’ll be life back to normal, with the normal stresses. But not really the normal worries. I don’t think I’ll have “the normal worries” ever again because my normal worries have been about cancer and death for a long time now. And for the time being I feel completely freed of these worries. Its amazing. I can’t really describe to you what its like to have that worry lifted off of one’s back. Worrying about cancer and death is just so massive. So much bigger than the car inspection bill or the noisy neighbor or the superficial family dispute. And it feels like these super massive worries have been there so long, sticking to my entire human being like sticky honey. Being home now is like the final release (although its a process and this is just the first baby step), because being in Buffalo I still was in the cancer zone. I was still in the “just-in-case transplant apartment” and wasn’t “well enough” to live at home. I couldn’t let go, I wasn’t allowed yet. I wasn’t allowed to be relieved. I realize now thats why I was so extremely antsy to get home. Well as of right now I’m well enough to live at home. And I’m well enough to not worry about having cancer. And I’m well enough to not worry about dying. Feels fantastic.

Sigh. I never knew I could be this happy to be stuck in this little slice of a building, this crappy old townhouse that I have lived in since my last year of pharmacy school (I would have liked to buy a house by now – its a huge dream of mine – but the whole cancer thing kind of forces one to pause everything in life and hope for the best…so I’m still stuck here renting). Life really is about perception. At one point I was completely sick and tired of this townhouse. Today I am perfectly fine with this place. It hasn’t changed one bit, just my perception. I won’t go into it much now but I’ve been thinking about perception more than anything else generally in the last few days. One person loves something, another person hates the same exact thing. Thats just two people’s perceptions of the same object. I mean the object is the object. It is what it is. Its just our brains that put meaning or value onto it, and each of us puts our own meaning or value onto it, which is pretty much our perception. Or how I miss all the little things in life, and don’t like this, and just want that, and am never satisfied, and always want to succeed and nothing is ever enough, then I get cancer. Then I deal with cancer for a long time. Then I’m done with cancer. And every single thing I felt and thought before is gone, and replaced by a calmer, cooler, satisfied with what is, happy person. My life didn’t really change. I’m still a pharmacist in the same townhouse with the same family and friends and wife and possessions. Literally all the material things in my life are the same as when I found out I had cancer. But my outlook is so beyond drastically different now. I mean I could be considered a completely different person. So by logic it has nothing to do with any material items. It is just my experience that has morphed my perceptions. All that changed were my perceptions. So how huge are perceptions? Huge. They are everything we have if you think about that hard enough. Everything is just how it is (a tree is a tree for example), all that makes us operate and think the way we do is our crazy mind making up our own (and sometimes crazy) perceptions. Go through your day tomorrow and when you look at anything and talk to anyone think about this: however you see everything and everyone is just a matter of how your mind is filtering what you are seeing. Your mind is giving everything meaning and value and forming opinions and all that really is happening is trillions of neurons are firing and communicating inside of your brain thus you are having thoughts about everything you see. These are just your perceptions and every single person around you is having their own. I’m not sure where I’m going with this paragraph now, but it feels important to write this out for some reason. I guess for me its a astronomically large lesson in life, that every unhappiness before (and even now) and frustration and negative emotion (and I guess positive – I guess every total emotion) I felt before was just my brain firing a bunch of neurons and creating a perception. And what I’ve learned is every single thing in your life can remain the same – and you can feel 100% different about everything, all the way to your core, simply if your brain fires neurons differently and you have a different perception. I feel very fortunate to have gained this insight, as I will be able to live life now with this knowledge and be able to make more relaxed, positive decisions that will contribute to my happiness and others happiness instead of having my perception based solely on what our society teaches us – that of success and wealth above all else. I feel fortunate to have gained this wisdom because I will now appreciate so many more things so much more. I am so much better off now. Unfortunately I had to have one HELL of a battle with cancer to gain this wisdom and have this valuable insight. So if any of you can wrap your minds around this at all and see that everything you see and feel (your entire experience) is simply based on how your mind gives value and meaning to everything (which is just a bunch of neurons firing), maybe you can walk away with some very deep, very valuable wisdom that very well could be the key to changing your life, even a little bit. Maybe some of you can gain some of this wisdom from just reading this post – instead of being forced into gaining this wisdom through an insane battle with cancer. Just take a bit and think about all of this, it really might help.

So that happened again. I was just going to write a quick update here telling you about how I’m so happy to be home and give everyone an update about how today’s appointment went. Then somehow, almost involuntarily I end up writing a huge paragraph about perceptions and try and convey some of the wisdom I think I have gained. Forgive me if it came across as anything else. Eh, it is what it is. I perceive it to be okay. I might re-read it this time though to make sure its not crazy talk. Well I’m sure its not but the way I write may make it sound like it is. But I guess even if it sounds like it is I’ll still publish this post because thats the nature of this blog. Its raw I’ve heard.

Okay, well, you are all updated. I am home. My mom is relieved of her duties. I am so thankful. She can now try and go back to living a normal life for herself at least, and rest up and not worry for a while. I’m home now for my beautiful wife, Cass, and our two children (our cats – we are sort of those crazy cat people who think our cats are our children) Bella and Cliff. So everyone can rest, as I’m here to hold down the fort again. Cass can finally take a breather as well, and hopefully can get herself back into some type of normalcy. We can hopefully all get back to normal as much as we can, although I’ll still have bloodwork and appointments so its not like I’m completely off the hook – yet.

And probably because everyone is wondering, how and when are we “officially” going to know whether all of this was successful, and that I’m “officially” in remission (which is a crock of shit word to me, I personally feel you either have cancer or you don’t – there is no in-between. If I get a clean scan, I am cured. The whole concept of remission can kiss my ass. Even if a person only has a clean scan for 6 months, in my chemo-saturated opinion, they were cured for 6 months and something came back). I don’t have the exact date or appointment set up yet, but around day 100 I will receive a PET scan (which is the main scan used to see tumors – uses radioactive sugar which lights the cancer right up – if you don’t have cancer nothing lights up that shouldn’t). Its basically this PET scan that everything is resting on. This should occur right around the end of September sometime. I can’t even begin to think about it. I have a bad track record with getting scans and having something show up that is not expected (like having the universe punch me in the face – has happened to me out of left field on like 4 or 5 different occasions), so pretty much at this point a PET scan makes me about as nervous as knowing you are going to jump off a cliff with no parachute. So I can’t even think about that scan. I’ve even considered just skipping it and refusing it because its just too scary and I don’t want to know. Sounds childish. Regardless, that is the tentative plan to find out “officially” where I’m at. (I’ll have it done though probably because my gut keeps telling me and trying to convince my brain that I’m cancer free.)

For now though, its time to relax, and do everything in my power to keep my mind disciplined and strong so I can heal as best as I can. I don’t want this crap to ever happen to me again, although its been a blessing. Its my time to seal up all the cells in my body, get everything back in working order, and then move forward and continue on. Happy mind, happy cells, happy body, happy life. I have a few days here to process being home, to get used to everything back here, to get used to all of everything again.

Sunday is Day 30. I am planning on one more big ultimate post, sort of like the ultimate cancer journey summary, although I’ve never really planned out writing anything so it may not work out. Or it may take me more than one day to write. I’m not sure. But I will start it Sunday. I hope it can maybe seal the deal with this blog, sort of like the transplant did for my body.

Lastly I have to thank every single person involved in any way with this entire journey. I mean every single person. I received literally maybe 50 cards during this transplant and honestly maybe 500 during my cancer journey. Thats a lot of people putting forth a lot of effort to send me kind words – thank you. And the same for all of the comments and feedback for this blog – thank you. To everyone who made donations to me, I have to tell you, I would be ruined right now financially if it wasn’t for all of your help. It is totally impossible for me to even estimate how much all of this cost in purely monetary terms, but it was tens of thousands to this point I would estimate. I mean the generosity was just mind-blowing. Absolutely mind-blowing. And it saved me and my family totally. So a huge huge thank you to everyone regarding that – seriously such a deep thank you. (As a result I plan on paying it forward whenever I am doing good and someone else needs some help – you all have shown me such kindness that I have learned how to be a much more giving person). I’m sorry I can’t go into naming each individual, there are just so many, and to be honest, I feel that if I name one person, I should name all people. And thats impossible as there are thousands of you who have helped me in one way or another. But please know that whatever your level of help, I thank you to the deepest level of my being. And just a huge thank you to anyone else involved in anyway, even if you gave the smallest comment only one time, it all added up to bring me to this point, a point in which I am free of cancer and also 100% indebted to all of you. Every single one of you. Thank you so much, you have helped me infinitely.

Alrighty. I think thats it for this evening, quite a smorgasbord of various ideas and paragraphs. Everyone have just a glorious weekend. And remember, if something upsets you in any way whatsoever, remember that its really just your brain firing a bunch of neurons that is causing that feeling (heck the feeling itself is just neurons firing too) so don’t sweat it too bad. There is a lot to be happy about (a lot to perceive as being good at least). Please take care, and talk to you soon.

Everyday I’m Shufflin’ (Day 23)

Good afternoon. Long time no talk – which is a positive thing. I haven’t written at all lately because there is nothing to really write about. There is nothing to really write about because everything is going smooth, and to be honest, I feel great. I am still surprised at feeling this good, but it continues. I am almost scared to write about feeling this good for this long now because I don’t want to jinx it. Everyone in the hospital and everyone that has been associated with this transplant prepared all of us for the trials and tribulations associated with being released. All of the precautions. All of the worries. All of the “don’t be alarmed if this happens”, or “don’t be disappointed if this happens and you have to be readmitted”. Even though my body is telling me one thing (which is its doing great), my brain is still scared from all of the hospital staff. This uneasiness has really been easing though within the last 5 days because I am remembering to listen to my body. I am beginning to trust what its telling me fully versus what I have been told by the hospital people.

I have been on edge with how my body feels since the high-dose chemo started. I have been in a hyper-aware state, and been listening to my body very closely, but knowing it is as fragile as it can get. I have trusted it and counted on it as much as I could. But my brain has been overriding it generally by being super careful and listening to what others tell me about how my body should feel and where I should be (although we all know I sort of did my own thing by walking miles and feeling good when my counts were absolutely gone when they said I would be feeling terrible). But now my body is giving me strong signs that everything is about fine now, and balanced. And I pretty much am feeling comfortable doing things on my own now, as in I’m ready to live at home, I am ready to be independent again, and drive, and be alone, and clean, and live as normal of a life as is possible. I mean I still have to remember the immaturity of my immune system. There is nothing I can do to speed that up I don’t think. It will be immature regardless of how I feel. So I have to remind myself to stay careful with that as I regain my independence. But my body is telling me we are good to go.

I’ll tell you what though, I still feel really beat up! Just trust me that my body is feeling great and good to go, but there are things that feel so beyond beat up compared to how I used to feel. There a few side effects that remain that, to be completely honest, bother the hell out of me. I hope to God they go away. The first and worst side effect I seem to be experiencing now is this muscle shakiness. I have lost fine motor control to a certain degree. For instance, pinching my thumb and pointer finger together to grab a kleenex out of the bottom of the box – my hand and fingers just shake. This same thing happens with any fine movement of my fingers and hand generally. Using a fork is when this is very noticeable. My hand sort of shakes. Its uncomfortable to even look at. Its sort of parkinson’s-like to maybe a very small degree. I hope it goes away though. I don’t really have a clue if it is nerve damage, or muscle damage. I have received so many different neurotoxins now, it truly is astonishing. My finger tips and pads are more numb now than they used to be, and this is new. My finger tips used to just tingle a bit, but now the pads seem to be just sort of numb on my fingers. Its a weird sensation, but probably part of this nerve issue in my hands. Not sure though. My nerves are probably just damaged to all hell. Not much I can do. This muscle shakiness (its not weakness, just shakiness – I can still lift normal things and everything like normal in that sense) also pervades my arms and my torso really. Another example: I lay on my back, then simply I lift my legs and my head and upper body at the same time, like an abdominal exercise. My body basically quivers. When I flex my arms I quiver. Its like my muscles just don’t contract super smooth like they used to. I’m really hoping and praying though overall that this may just be a result of being so sedentary for a month and my muscles are just not used to being used. I plan on trying to work out here down the road and hopefully I can recover this.

So we have the muscle stuff, thats what bugs me the most. And now the weight and muscle loss. I think this is partially due to the steroid. I know some people gain weight, but it seems that my muscles melted off since I’ve been on this steroid (which I didn’t mention but I am almost off of it, only like 6 days left on it after today – and the dose is nice and low now too). I feel like a skeleton. And as many of you know, I was a more than less muscular guy before all of this happened. Even throughout all of my chemos I managed to hang on to a bit of muscle although it was way way way less than I had before all of any of this started. But now, wow. I am skinny. I look like I’ve never stepped foot in a gym. I am that skinny guy again. That skinny guy everyone knew back in high school. Except I’m bald. And very pasty. And shaky. You ladies are lucky I’m married, let me tell you, I’m really representing a real hottie here. I’m ready for the cover of Men’s Fitness. For real though, this skinny muscle deterioration thing really destroys my mind more than anything because I spent years and years working my butt off in the gym to get bigger and stronger (for those of you who don’t know or who care I hold a state record in the WABDL association for deadlift at 537.5 pounds back in January 2007 – I weighed in that day at 174 lbs – accomplished all without every touching a steroid or hormone or anything – all natural). I put a lot of work in for a lot of years and this transplant has now 100% taken it all away. Or taken it all back. I guess I never owned it. Life just took back what I borrowed. I borrowed some muscle and some strength, and life said, “well, it was a good loan, we really really need that back to make it through this”. So life took it back. I guess now that I type this out I realize I was probably 5000% better off in this situation having that mental resolve and muscle mass. My body probably really appreciated it. Eh, its still very difficult to lose everything like that.

My lungs feel a bit beat up too. Just beat up. Not really like there is anything wrong but right before this transplant I had my entire right side of my chest radiated through 18 days of higher dose radiation. So my upper right lung is basically just fried. And it feels fried. I had bleomcyin lung toxicity during my first chemo. Then during this transplant the last chemo I received was very hard on the lungs, and I received the highest dose that medicine is willing to give people. I know it hit my lungs hard I can just feel it. When I take as deep of a breath as I can, I still get a good breath, but I don’t feel that deep cool saturating-my-blood oxygenated feeling. Deep down I worry that my lungs are so beat up now that they won’t last me another 50 years if I am to live that long. Poor little lungs. They are just trying their best to oxygenate my tissues while keeping themselves clean. Big job. They need some rest now, some respect. So whenever I think of it (which is kinda often) I take nice long deep breaths, especially when walking, to try and give my lungs some work-out.

Past those things though which sound like a lot because I typed paragraphs about all of them, I feel great. I really do compared to how I thought I’d be feeling. I have no idea what my counts are now, and won’t until Thursday when I next meet with the doctor. They are most likely stable though I would imagine. And speaking of this Thursday, I meet with my actual transplant doctor, not just whoever is in clinic that day, and basically I’m telling her that I’m going home, as it will be Day 27 and I will be feeling fine. Everything here is paid for until Friday, so I basically refuse to stay past that. I can live at home. I’m ready to go back into life a bit I think. There is no need to incur further costs and hardships by trying to continue to live here in Buffalo when everything is good to go. But I have a feeling she will agree without me probably even needing to give much of an argument, as it just seems logical. In the beginning they said 2 weeks after discharge is basically how long I’d have to stay, and Thursday is exactly two weeks after discharge. So I’m planning on going home Thursday evening. Then one week from Thursday I have to come back up and have one more appointment and some type of crazy blood work where they look at the maturity of my immune system. They call it the “day 30 work-up” although its scheduled for day 34. Hopefully though everything continues to just go smoothly, because every single day everything goes smoothly is one more day my immune system has to mature and one more day my body has to recover thus one more day of me getting closer to living a normal life again.

On the miscellaneous front, my mom and Cass are feeling a bit more relaxed about everything I think, in terms of how I’m feeling. I’ll tell ya though, those two girls are beat up mentally from having to travel back and forth and take care of me and all the cooking and cleaning and living in two places a few times per week while simultaneously managing their lives outside of this situation here (my mom taking care of the rest of my family which being a mom alone is a huge job and Cass working her summer art program 5 days per week while still traveling and staying up here multiple times per week). I am so ready for all of us to travel back home, and for everyone to have a rest. I wish there was a way for me to thank them enough. But that is probably impossible as it would be impossible to thank people for this level of love, help and dedication.

Thats about it. I’m going to continue to just kinda keep busy around here. Been doing a lot of computer games, cleaning and chore-type stuff (that I’m allowed to do – not allowed garbage and dirty laundry and that kind of stuff yet), walking. That type of stuff. Nothing terribly taxing. Nothing terribly exciting. But enough to keep on keeping on. Until Thursday at least. Once I get home Thursday though, I’m driving alone into the blazing sunset, wind streamlining my bald head, 30 miles per hour over the speed limit.

They Say I’m Immature (Day 18)

Looking good. Just had some lunch after getting back from the clinic appointment this morning. The appointment was as I expected pretty much, I checked out and everything is looking good. You have to prod the doctor to have them say that though. I’ve learned that the less doctors say, and the less time they spend with you, and the less concerned with you at all that they seem, the better you are. Less is more in this situation. But I checked out it seems. And I had my first blood draw since Friday today too, so the counts. And I want to spend a second and talk about whats going on with my immune system maturity. Its confusing.

Steroids: Not the Most Fun I’ve Ever Had (Day 17)

Hey everyone. Just hanging out in my transplant apartment here in sunny Buffalo. You know today marks 4 straight weeks I’ve been here now, and this entire time I’ve only seen it rain one time, for about 5 minutes. I know back in good ole Erie they’ve gotten more rain, but its just sunny day after sunny day here. I mean its rarely cloudy. I kind of feel like I’m out west a bit, although I have very limited experience being out west. I just know its dry and sunny and consistent there, which is exactly what it is here. Its kind of boring to be honest. I wouldn’t mind a nice thunderstorm, or just a nice downpour or something. But thats me being picky since I’m feeling a bit better and have been out of the hospital for a few days now.

Speaking of being out of the hospital. I’ve been out since Thursday afternoon. I don’t know why this is but I feel like I’ve been out for like 2 weeks already. I can’t quite grasp why and how my mind is doing this because it really has only been the weekend.

Fantastic Friday (Day 14)

Good afternoon. Hope everyone is having a fantastic Friday. We sure are here in sunny Buffalo. Just a nice little update here. This post is like a nice little soft-serve ice cream cone melting slowly, like today will melt into this weekend. What I’m trying to say is that everything is going great here, almost to the point of no news is good news. But I guess there is news, some great updates on my counts.

Discharged yesterday. Back to clinic this morning for blood work and the first day out of hospital clinic appointment (which I feared was going to be strenuously long but actually was okay). Here are my counts.

WAIVER: Counts are mind-blowingly amazing today. I’m not responsible for you passing out due to disbelief.

Indescribable (Day 13 – Discharge)

Absolute and utter happiness. I feel that I have entered heaven. This is honestly not really an exaggeration either. I am floating through reality right now. It really appears that I am on some type of marvelous street drug. I have never in my life felt this type of feeling inside of me. Pure contentment. Imagine being in a favorite spot, we all have one. The woods, a field at sunset, the beach at sunset, etc. And in normal life for a moment every other worry is forgotten. You feel pure calmness and serenity. But in real life this feeling is short-lived generally. But we all know it. Its like the best most calm feeling ever. I am experiencing this nonstop. And I can’t even stop it when I try. It is unreal. Just like my post this morning, unbelievable. I am barely able to write this post because its hard for my brain to even process much. It has never been this stimulated in its life. Maybe as a newborn baby. That really is maybe what I’m experiencing right now. I feel like maybe I was just born at 230pm when I stepped foot out of that hospital. But I’m able to describe the feeling of seeing the world for the first time whereas a newborn can’t.

UNBELIEVABLE (Day 13)

Just about the most unbelievable thing has just happened. Actually in my world I would consider it to be the most unbelievable thing possible. I’m being discharged. Right now. The ball is rolling. Doctor has already been in and checked me out. I should be walking out of here early this afternoon. My white blood cells came back this morning well above 9. They went from 1 to 9 in two days. I still am showing no signs of a fever. I will explain the situation more later as now this morning has become a whirlwind. The best whirlwind of my life.

Praise the Lord.

You Ask and You Shall Receive (Day 12 bonus post)

This will be extremely fast and short. I wasn’t even going to post. But I have to get this out there because it seems so coincidental. It really does seem how God operates sometimes, as in, you get what you ask for, and sometimes its not exactly what you had in mind. It really seems like the perfect example.

Remember Sunday? I did the negative post. I had had enough. I told all of you that during my walk I was tired of every smell, sight, sound of my room and the hallway I was walking. I was tired of every aspect of my entire living quarters and situation. I put that out there to the universe. Then I remember right at the end of the post they came and did my vitals and I officially had been labeled with having a fever (I don’t have time to look back but I think it was like 38.3C when I was writing my post). And this made me mad because I knew there was going to be all this hooplah with cultures and antibiotics. So in that instance I was tired of what I had. I was mad I had a fever of 38.3C. I didn’t want to be in that environment at all, I felt it that deep in my soul. I wanted out bad. And I didn’t want a fever of 38.3C either.

So what happened exactly the next morning?

Fast Little Positive Update (Day 12)

Morning. This will be quick because I just wrote a post the size of the bible just last evening. Just a quick positive update for everyone.

1. Still no fever. Not even close. My temp has stayed below 37C (I think thats 98.6F) ever since they gave me that steroid and that last set of little shivers went away yesterday morning. I feel so much better its incredible. But I have never experienced a steroid of this dose, and the side effects are very noticeable. My head is flushed, I still feel like I could run 10 miles while flipping cars along the way, and my appetite is huge. My eyes sort of burn too, and my left nostril keeps running just pure clear snot. My eyes are burning and dried out feeling. Its odd. And I feel a bit itchy randomly like my skin is flushed. Which it is because steroids flush a person out. Similarly if you’ve ever seen one of those huge veined-out muscle men walking around (we’ve all seen a few) who look like their blood pressure is enormous and their skin is super red…that is the anabolic steroids they are on. Flushing. Those anabolic steroids are like a whole different universe though than these corticosteroids that are used in medicine for inflammation. Anyway, fever is gone, I get another dose of steroids here this morning so hopefully that will take me out of the woods of this engraftment syndrome.

Big Catch-Up Post (Day 11)

Hi everyone. What an insane two days. Yesterday was very scary. Then last night was scary. Here is the timeline:

Sunday: develop a gradual low grade fever, going over 38 exactly when I wrote my negative post.

Monday: 1130am, I develop this drug rash that runs down my entire torso onto my legs. I go into shivers, into rigors. I’ve never rigored before. Its like a convulsion seperated by a few seconds. Think of a HUGE shiver where all of your muscles are completely tense to try and prevent the huge shiver from happening. This went on for about an hour. Thank the Lord they have medicine to stop rigors and it works within 5 minutes. They gave me that medicine. It worked. But my temp was 40.3C (like maybe 104.5F or something). Finally my shivers/chills/rigors go away but I am feeling like I just was in a car wreck. My body had never tensed up that long for that long in its life. Plus I don’t think my body has ever had a fever that high. So I am completely wrecked.