Today was the kind of day where the tears just flowed freely and my bed seemed like the only sanctuary from...well, everything. Though I did not take up residence in my bed for any inordinate amount of time, only an hour to rest after clinic, and there were a few 'bright side' moments, today was, well, really fucking hard. Those 'bright side' moments lacked luster and hope. My heart just couldn't find peace. I am so, painfully homesick.
Several months ago, before being poisoned and transfused with a new life, before my body changed beyond recognition, before I really knew what struggle was, before my husband and family dropped their lives as they knew them to come and deal with my fucked up body, I blogged about a story my friend and yoga teacher Justicia told in class. The story was about cycling up a hill. A really big hill. How the sometimes, the only way to make it up that hill is to keep your eyes on the road just in front of your tire, because if you look straight to the top of that hill, it will seem impossible to mount. At the time, this hill, mountain as it has since become, was still in the distance. A shadow on the horizon. Now, we are on this mountain, we have made it through hills and ravines, through raging rivers and enjoyed shining moments in the sun. Some of this journey I've done without my best traveling partner, those are the toughest times. None have I done without another rider next to me (and a pack behind from home cheering me on), but it has felt very lonely. Now we are nearly to the top. Nearly there. But it seems that the mountain just keeps growing. Like it it rising in front of my eyes and these weary legs are having a hard time keeping up.
Today in clinic, I spoke with my team about the urinary tract symptoms which have persisted all week (and now how a possible name: polyomavirus- Google it, it's fucking strange) and asked about the project treatment and expected recovery from this hell. I was told it could take a month or so to feel relief, that is IF this is all due to this particular virus, which they don't even know yet (viral cultures take a week to yield results). One month. FOUR fucking weeks of pain, running to the ladies room, limited activity (read: I now know where all of the restrooms are at the local outdoor mall and tucked in at least four flours of the hospital) and heavily disrupted sleep. Granted, in my head I've already subtracted the week I've spent with this bullshit from that one month figure, but the idea of enduring this for another several weeks was nearly more than I could handle today. I'm a baby. And a control-freak (apparently). Not going to lie. Pain, discomfort, interruption to my daily activities or prevention of things that I want to do- these are all things that send me over the edge. I yearn for comfort and control. I've been enjoying a good amount of comfort since my last hospital stay, for that I am hugely thankful and LUCKY, but this new complication feels as though a pile of boulders has been dumped in my path. The drugs they gave me to relieve some of the symptoms also take a little while to kick in (and also have unpleasant side effects like drowsiness and upset tummy), and I have been reminded that "everyone is different, you may not get much relief". Well, I think I have had SOME relief, thank God/Jesus/Buddha/Krishna/Flying Spaghetti Monster, but they're right, everyone is different. Oh, I was also told that blood clots are an exciting part of this virus that I have to look forward to. Think about how you get rid of a blood clot in your bladder...yeah, sounds fucking cool right? Let's just pray that I get cut some slack and won't have THAT to blog about. Ever.
Am I being ridiculous? I just don't know. I look around the waiting room at clinic and I see others who look much, much sicker than I, who have had longer, harder paths and I feel guilt for getting on the internet and bitching about my bathroom nonsense and being homesick. But then I have to sprint into a smelly public bathroom and I could give a crap about anyone else's struggle. Yeah, pretty yogic right? Not so much. Not so much at all. Wallowing in self-pity is NOT on the path to enlightenment. Or happiness.
On the topic of going home, with all my soul I want to get home at the beginning of December. As that time draws nearer and those bottles on the wall grow fewer, and I look at all of the steps that must be taken, and be successful, in order for me to get home by that time, I get scared. The steroids are still being tapered, and evidently this is the dangerous time in this process in terms of GVHD flares. In addition, I need to be taken off of the IV anti-viral before my port can be removed, another HUGE sticking point for me. New dressing or not, I need this thing OUT of me. That anti-viral must be switched to an oral drug, the very same which contributed to my liver problems and hospital stay. Add that med switch to a tapering steroid and you can potentially get some suckyll being tapered, and evidently this is the dangerous time in this process in terms of GVHDsucky stuff. Please don't misunderstand me, I am NOT sitting around counting the horrible complications that could happen. I am NOT focusing on the what-ifs. It just seems as though if I address these fears, these scary things head on with out amending them with a "yeah but, COULD be dangerous. MIGHT NOT happen."- positive-thought every time, I am better prepared IF something should happen. Not negative, just realistic. That last hospital stay bitch-slapped some scary reality into me. As it stands, there is not currently any discussion of keeping me here longer. Much of what I have going on can be managed from home, by doctors in Philly, but this fear is just filling me at the moment. It is so staggering how MUCH goes into having these transplants go successfully. Staggering at the number of things that can pop up. Lynne, my APN actually said to me today "You really got the short end of the stick on this one". This didn't actually make me mad at her, because she's right and she said it with compassion, though I still had a hard time holding in the tears until she left the room.
Tears have been gushing from me more frequently lately. They just come bubbling up out of me and down my puffy cheeks. I look in the mirror and cry, I do not look like myself. My body does not look like my body. It DOES NOT feel like my body. Add to that the blood vessel that I burst, no, EXPLODED, with an ill-placed insulin injection on my abdomen last night and well, let's just say having a giant sliding mirror in my bedroom is a bit...cruel. My best friend is flying in this weekend with Phil (BRIGHT SIDE!!!!!! SHINING MOMENT!!!) and I am terrified at how she will see me. When I think about arriving home and having those of you who haven't seen me since August see me, that scares the hell out of me. I have shed tears over my biceps. My friggin' biceps. How stupid is that? But it happened, and it was real. It is shocking to me how much of my self-worth I placed in my physical state. Not that I was ever perfectly fit or sleek or...well, perfect. I just found much of my identity in my form. Now that that is gone, I have had to do some serious self-searching...and will continue to need to do so. Some priorities and standards need to be reevaluated.
This journey to health is trying, I suppose that's the understatement of the century considering all that I just rambled on about, but it's true. My family, my husband, my friends have all been impacted, for this, and I've said this before, I feel guilt. My parents have seen each other less over the last several months than Phil and I. That's not fucking OK. My siblings have to spend Thanksgiving down here, all of us away from our extended family, my husband included. The path has been hard, it will continue to be hard. It has to end sometime. It has to. Right?
I have no profound ideas about this at the moment. Not that my ideas are every worthy of being called profound. Some things just can be 'spun'. It's happening and I have to strap in or be thrown from the bike. My brain can't go there now, can't think deeply and serenely. I've reverted to the primitive rat-brain of basic wants and needs...yogic thought is escaping my addled head. Home, comfort, love. That's the prescription.
Now only if my insurance company would pay for a thirty day supply of THAT.
Well, Philly and beyond: thank you for being in my pack through this. My heart yearns for your familiar faces. Much, homesick, love.