(Guest blog by Greg Compton, aka No.1)
All taped up with the catheter in my spine.
Yesterday I returned from my first ‘three-day procedure.’ They pretty much call anything other than the usual twice-daily subcutaneous or IV injections ‘procedures’ here. So far I have had three: The caudal procedure in which stem cells were injected into my tailbone, a deep-spinal-muscle procedure in which they were injected in my neck on either side of my spine, and now the three-day procedure.
It is called the three-day because it is administered at a different facility than the one we normally stay at, and, although we are only gone a little over 48 hours, those hours span Wednesday, Thursday, and Friday. In this procedure, a catheter was inserted into my spine so that stem cells could have direct access to the spinal column and therefore better access to my brain, from whence all my problems ‘stem’ (ha!).
The last couple of weeks have been pretty rough. I have avoided posting or even reading Facebook because, well, I have this thing about not posting the negative stuff. I have been told to stay positive, think positive, be positive, do positive, and in so doing I will stimulate the stem cells in a positive way – you know, the whole mind-body connection thing. So I do my damndest to keep a positive attitude, even when I feel like all hope is lost, and yes, those times do come. So posting that I have fallen again into a deep hole just does NOT work. True, I think I have seen improvements, but it has been awhile since I had those first “good few hours,” which, from a healthy person’s standpoint, would still be considered pretty yucky. Still, it was something that I could pin hopes to, but also a place to fall from.
Melissa walking along the front of the Gautam Nagar facility.
Melissa, my true reason for living, for fighting, for staying the course, is so good at reaching into those black holes and somehow pulling me out, and it kills me to see how much she hurts when I am there. Dr. Ashish, who administers all the procedures here, warned me that this would happen. “One step forward, two steps back,” he told me. “You will re-experience some of your symptoms, and that can be difficult. It will be confusing, and it is normal to feel doubtful at times.” So far his words have been prophetic, but also infinitely helpful as I find that I am better able to drag myself out of that hole or even avoid it altogether when I feel the sneaky depression spiral coming on. Still working on the pure faith thing.
Gautam Nagar lobby (Gotham)
And so, on Wednesday morning, we set off to Gautam Nagar, the neighborhood in which the other Nu Tech hospital stands. Some of the patients here have nicknamed this place “Gotham” because, well, it kinda feels like that there. I have been feeling especially bad the last week or so, with a crescendo last Friday, when I felt like I had the flu minus the chills and fever. I saw this as a good thing…a Herxheimer or what is known as a healing crisis, right along with the usual inflamed and sore lymph node that has been one of my on-again/off-again Lyme symptoms. Still, it is disheartening to feel so bad when I have worked so hard to get here to feel better. The days that followed, leading up to this Wednesday, I felt so bad I really doubted I would be able to have a tube put in my spine, but I had no fever, normal blood and urine tests, and normal BP. So I was fine according to the tests, I just didn’t feel it (welcome to the world of Lyme), and into the cab I went, headachy-swimmy brain and all. When we got there the first thing they did was put an IV port in my hand and prick my arm with a test dose of the IV antibiotic they were going to give me throughout our stay. This involved a stingy injection under the skin to see if any allergic reaction would occur. The skin tested normal but within a few minutes itchy hives broke out on my abdomen, my throat and ears started to itch, and I broke out into a cold sweat. The good times were apparently rolling now! No big deal after all (good thing I got a test dose) and they changed to a different antibiotic which worked fine. A few minutes later I was in the OR, and Dr. Ashish was explaining what would happen next. After that I was rolled over on my side, and in went the local anesthetic (just a small pinch) about the mid-lower back over my spine. I could feel him working as he installed the catheter, and shortly he was asking me if I felt anything. “Any pressure or sensations?” he would ask. “No, nothing,” I would respond. This went on for a few minutes more until finally I could answer “yes.” Indeed, I could feel a pulling pressure in my lower gut and some uncomfortable pressure in my lower back. “Excellent!” he proclaimed. He had apparently found the spot. I must say I was somewhat proud of myself at this moment, for I had not one ounce of trepidation before or during this procedure (OK – I was a little concerned over the allergic reaction thing, but hey!), and the heart monitor which steadily beeped away and never increased as my spine was probed proved it. If there is one thing I have gained from this experience it is confidence, and I am thankful for that. Before I knew it the procedure was over and I was rolled onto my back for my first catheter infusion into my spine. Again, “Any sensations, maybe down your legs or chest?” “Yep – I can feel it in my lower back and gut….and oh yeah, a little down my leg now!” I was quickly able to say. Four syringes full of stem cells went in, and by the time he was done, it felt like someone was stepping on my back and gut…not the worst pain ever, but uncomfortable.
Lifting me up onto the bricks.
After that I was wheeled back to our room where I was to lay flat on my back with the foot of the bed jacked up with bricks under two of its wheels for four hours so the stem cells would drain toward my head. Once again, as with the caudal procedure, where the same upside down laying was necessary, my lower gut began to ache incessantly as gas built up but could not escape. During the caudal I made it 3 hrs 45 min before the pain became too great, and I rolled over on my side, doubled over.
Two hours on my belly- fourth round of ESC's at Gautam Nagar.
This time I only made it 2-½ hours and spent the rest of the tilted-up 4 hours on my side in a fetal position which relieved the pain to a tolerable level. And so it went, four infusions later that evening, again morning and evening the next day, and one more time the third morning (a double dose this time). The saving grace was that each time after the first tilted-yoga-laying (except for the last) I was on either of my sides or flat on my belly – MUCH easier.
Dr. Ashish asks how I am doing each and every time he comes to push in the clear liquid magic. The morning after the catheter went in his eyes lit up and widened as though he just witnessed a miracle with an equally amazed sounding “excellent” when I told him I was feeling much better than I had been the last week or two. This was especially remarkable considering I may as well have been sleeping on a bed of nails for how much sleep I got that night…and that’s saying something for me! Ordinarily such a crappy night’s sleep would have left me feeling beyond terrible and tossed me right back down that deep dark hole. During that evening’s infusion Dr. Ashish again asked how I was doing with an emphasis on the emotional. When I told him, “still up and down – still doubtful at times,” he reminded me again that this is normal, that “everyone [in your situation] goes through depression and doubt. Yes – health will come soon, but there will be ups and downs. You have to keep moving on, and don’t be afraid to keep living.” Well, it went something like that, and again he was pleased to hear that I was doing better at taking such messages to heart. After my last infusion on Friday the sisters (nurses) removed the catheter and we finally left for the main hospital after lunch. The good news (I can see your smile now Dr. Ashish) was that upon leaving I can at least say I was feeling better than when I arrived on Wednesday!
They have told me here over and over again (as have numerous patients) that “after six weeks it is like a light switch, and then it will be up, up, up, and up!” So now, on the eve of my six week mark, I am sitting here contemplating hope, healing, and faith, and I am again thinking of the sign I received just before we left for India. Did you know God sends e-mail? OK – it was actually my dad who sent it, but its meaning was not lost. Just a couple of days before leaving for India I was laying on the couch, questioning again if I had made the right decision – doubtful, fearful, scared shitless with tears streaming down, wondering if even stem cells could save me from this foggy-spacey hell. And so it was that I asked God, the universe, the One, all consciousness, or whatever you want to call it for some sign that this was not just the right thing to do, but the thing that would ultimately be the road that would lead me back to health. An hour later I was at my computer checking my e-mail and there was a message from my dad with a link to an article about stem cells, which he was forwarding from a family friend who thought I might be interested in reading it. I clicked the innocuous looking link and as soon as the article appeared I stared at the screen in amazement and the tears once again began to well up. The title of that article? Stem Cells: Keep the Faith.