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.