I have officially been hospitalized for 3 1/2 months and have gone through hell and back many times. However, deep down, even when I came close to dying, I always knew in my soul that it wasn’t my time yet and that I had more living to do. (Which doesn’t mean I wasn’t scared and terrified at times).
With this said, it has not been an easy journey emotionally, psychologically or physically. So now, I find myself much more emotional about the slightest set back, or change or anything that might potentially delay my going home. Yes I know I must be patient and be physically ready and safe to go home but the closer I get to that point, the more I realize how far I’ve come.
I’m anxious to get home and I know it is close at hand, but it’s more than that. It’s the realization that I am accomplishing my goal of not succumbing to this disease that put me here in the first place; the goal of surviving; the goal of my convictions. The fact that I’ve been strong, determined and kept pushing on no matter what makes it very rewarding yet overwhelming.
I am so close, and yet, there is still work to do. Like mountaineering, hiking or mountain climbing, once you’ve reached the summit your are elated and ecstatic, however, you still need strength and energy to come back down. Your vision is to summit but your ultimate goal is always to make it all the way back down safely.
Did you ever set a goal so outlandish you didn’t think possible to attain? You go ahead, tread on, hoping for the best, pushing yourself beyond your limits, wondering where you’ll find the strength to keep on going? …and then you accomplish it. You reach your goal. Something at some point you thought was not possible becomes reality. The emotions are extreme. You shake, cry, laugh realizing what you’ve just done and the sheer realization of that accomplishment is overwhelming. This is what it feels like surviving what I’ve been through.
On May 24 I was transferred from the BMT Unit to the Rehab Unit. That’s huge! It means that health-wise, I no longer have medical needs requiring me to be on the BMT Unit, that my needs are now physical rehab. I am this much closer to being discharged and health-wise doing pretty good. I’ve ‘summitted’ and now I’m coming down safely, on my way home.
The best news? If I continue this way, I might actually be on the road to remission! That’s fantastic, amazing, incredible.
But, yes, there’s a but. There are still a few health issues: liver enzymes fluctuating slightly, persistent lung infection, and contracting the C. Diff. Bacteria a few days ago. Yeah, I know, one foot out the door and here comes a slight set back. But this is treatable with antibiotics and not life threatening. Just a pain in the butt – literally!
A few days ago I started having diarrhea. Yes, gut issues again. One would think there’s more to our bodies than our digestive tract, but no, our ‘plumbing’ is definitely a big part in the proper functioning of a healthy body and when something goes wrong with it, it’s a sure sign something’s going on.
Now, from recent past experience with the Acute Gut GVHD, which lasted months, and the intestinal lesions, as soon as I demonstrated signs of GI issues, everybody went into high gear and a multitude of tests were ordered. I was immediately put on several antibiotics until we could figure out exactly what was going on.
Two days later, it was confirmed that I had contracted the C. Diff. Bacteria so common in hospitals. After being here so long, it’s amazing I haven’t gotten this sooner. A sigh of relief was felt all around from the medical team to the nursing staff, myself included, as it meant that it was not GVHD. Thank goodness.
The BMT nurses and doctors were themselves praying it wasn’t another bout of GVHD. They’ve all seen me go through so much that they couldn’t imagine me going through more. The whole BMT team have been amazingly supportive and a huge part of my recovery. They are an incredibly compassionate bunch of people.
Upon revealing that I had caught yet another bug, someone asked what I had done to deserve all these challenges? Well, I don’t believe I did anything to ‘deserve’ going through what I did, it just happened. I didn’t ‘bring it upon myself’, I don’t have a ‘dark cloud’ over my head, and I didn’t ‘create’ all of this with the ‘power’ of my emotions or thoughts. Like Cancer itself, it just happened! I don’t blame myself or anything really. I just need to accept it is happening and deal with it.
So here I am, feeling so much better. Liver is looking relatively good overall, just a few enzymes still struggling (LDH, AST, ALT, GGT) but the main one, Bilirubin is pretty darn close to normal so we’re happy. With this said, because there’s still some liver enzyme fluctuations, I need to remain on one IV anti-fungal med for the slightly persistent lung infection as the pill form of it is too harsh on my precarious liver.
Unfortunately, this IV medication is sucking the potassium out of me so I also need to be on constant hydration with added potassium. If I didn’t get a constant infusion of potassium, I’d be sucking down potassium pills 24/7 and eating a million bananas. I wonder if Ben & Jerry’s ‘Chunky Monkey’ ice-cream counts towards potassium intake? It’d be yummy!
My steroid-induced diabetes is also doing better. My blood sugar levels seem to be normal most of the time and so Endocrinology regularly adjusts the amount of insulin I need. Since this is meds and steroid-induced, we hope that once I taper down the steroids and get off this IV med, which ironically needs to be given with a mixture of dextrose (hence the diabetes), that I will go back to normal and will no longer be diabetic. That’d be nice.
Today I received a nice accolade that made my day. I knew that many of the BMT nurses and docs were rooting for me at the worst of times, and hoped I would make it out of here but signs were not always pointing in that direction. Many of them told me they admired my determination, strength, grace and courage. In fact, some of them told me they would comment on my positive attitude during their rounds meetings.
I remember my Fellow doc (who has been following me for 3 months) coming to see me and asking how I was. I’d say well, he’d say no, things were not good. Today I asked him if he thought I’d make it this far and he admitted he wasn’t sure I’d make it at all back in March and April. He was impressed that I never veered off track (it’s also called being stubborn) and he’s naturally very pleased that I have proven him wrong.
Admittedly, I am very proud of myself as well and I must also give credit to an amazing support system. From my amazing local friends that help me every which way they can, running errands, offering emotional support, holding my hand, to my incredible QC friends and family coming all the way here to hug me and tell me I matter and that I am loved. Trust me, that is what got me through. That is what keeps me going. Oh, and those Montreal bagels and maple butter waiting for me… Friends and family do wonders on one’s moral and will to keep on being a surviving warrior.
Even when I moved here to Rehab from BMT, one of my favourite nurse (Robert) accompanied me during my transfer and hugged me multiple times before leaving, saying they’d all miss me. In all honesty, I was crying. In fact I cried and moped like a 5 year old almost all day when I was told I’d be transferred here.
I will definitely go see them and show off my walking progress on discharge day. I told them I’d walk out of here and I want them to see that – me walking out of here.
Currently, I am doing physio therapy and getting stronger and closer to being able to climb stairs. Home sweet home, I’ll be there soon.
I’ll keep you posted.