The Indian Adventuress Returns

I’ve been getting e-mails from worried blog followers wondering why I haven’t posted. So, for all of you who are hanging on so faithfully, with curiosity and hope -- this one’s for you.

I feel like I’ve entered some kind of strange reality that would be called Needle-Mania if it were a horror film. I should clarify before I go any further that I am not scared of needles. I recently finished a five-month series of antibiotic injections which I administered safely and efficiently every night myself (despite skepticism from harsh critics); when I donated my eggs ten years ago, I did the same with hormone injections; and through this illness, I’ve become accustomed to being a human pin cushion for never-ending tests and treatments. But all of a sudden, it seems sharp jabs are coming at me from every angle. When I think about this feeling, I realize it’s only because it’s true.

Just as I get adapted to my morning and evening stem cell injections, (and B12 shots to resolve my plummeting levels), it comes time to receive my baby stem cells intravenously as well. The numbers of stem cells in the IV are much higher than those they give intramuscularly. With IV, they go directly into your bloodstream and circulate throughout the whole body. I like the concept because chronic Lyme Disease can attack every body system and this makes me feel like all bases are covered -- organs, tissue, etc. I still haven’t figured out my crazy schedule exactly, but it goes something like this. Note: for those of you uninterested in my daily dance with needles, please pass go (no hard feelings).

Codes
IM=intramuscularly (shot in arm or leg)
IV injection=shot into vein in hand
IV drip=IV into vein in hand over a period of time (similar to when you receive fluids from and IV bag in the hospital)

Day 1 – IM a.m., IV injection p.m.
Day 2 – IM a.m., IM p.m.
Day 3 – IV a.m., IM p.m.
Day 4 – IM a.m., IV p.m.
Repeat days 1-4 of alternating schedule until day 10
Day 10 – Intravenous drip a.m., IM p.m.
Day 11 – Intravenous drip a.m., IM p.m.
Start over

I am often confused over what happens at what time of day and find myself just pulling out a leg or arm at the mercy of the nurses and doctor’s commands.

In the midst of all these changes, Dr. Geeta Shroff invites a lovely Indian physician to come spend time and talk with me. Dr. M’s husband suffered from ALS and Lyme Disease, before recently passing away. Because of her first-hand experience, she knows so much about Lyme Disease and her perspective is enlightening. She comes across more like a wise woman than a doctor, although her broad knowledge of the world and medicine proves her suited to be both. She walked into my room unexpectedly as I napped, pulled up a chair and sat down. I knew she was coming, but was unsure of exactly when. Sleepy eyed, I welcomed her as the “sisters” (nurses) from my floor doted, offering her tea, water and everything short of a back massage while she sat. “She must be a big wig,” I thought, “Only special people get tea on a tray.” She carried a huge purse, had long silky hair and wore typical intricate patterned Indian attire. She felt closer to a “presence” than a “person.” After 30 years of being a physician and probably doing double that time living her life, she was like intellect and spirit wrapped in a sari. We started to talk as I told her about myself -- the challenges, the blessings and how really, I believe they are all one in the same. I took her on a winding verbal journey of my life as she listened with a steady gaze. Almost immediately after I began, she interrupted to say, with stern emotion, “Don’t worry. I know you are going to get well.” Funny thing is, I never worry about that. Even if sometimes I huff and puff and pout over pain and other inconveniences, I know one day, when the time is right, this part of my life will be over. Her lip quivers and tears well in her eyes when I talk about how hard it is looking so healthy, but feeling so bad. I am at times quickly judged and often dismissed as not sick. I am easily misunderstood. I describe it most accurately to doctors who comment on my healthy appearance as pretty on the outside, falling apart on the inside. She says nothing except "I know how you feel." I don't ask more as she has said it all, and I get it.

My new friend is curious about my passions and asks what they are. I tell her with intent and enthusiasm how I was meant to make a difference, help others, write for the world, and maybe teach a very important lesson -- that healing takes more than fixing. She smiles like I answered her question either exactly as she had expected, or exactly as she had hoped. She assures me that those who suffer but strive for something greater than the success of only themselves, are the ones who get well. I believe it whole-heartedly. Stories spill from her lips as she sips tea. I begin to feel more and more like I am on an Oprah made for TV movie. Dr. M reminds me to always remember the power of self. She gently confirms I am already doing the right things and the Universe is shifting to bring me what I need to heal myself, so I will be able to move on and do bigger things.

When she talks about the Universe shifting, I can picture it in my head. I know that is what’s happened over the course of the last couple of years, and it continues to do so. I have understood the concept of the power of self since almost the day I got sick. I’ve been through treatments galore and with that, I’ve seen every kind of patient. Many go to the best doctors, do all the “right” things medically, but it is obvious to me as the onlooker, that they have every component except their own power precisely organized. Unbeknownst to them, they are actually the missing puzzle piece in their frantic search. Knowing this is my advantage. There is no job in the world anyone would expect to be paid for and be successful at by simply just showing up. Why would life be any different?

After ten days of intramuscular stem cell injections, my first IV shot was given in a vein in my hand. It was a small prick which caused not even a flinch. The nurses here are so sweet, and almost paranoid about pain. They ask constantly while squinching their faces with apprehension, if they are “paining” me. I can't bear to tell them "yes" unless it's severe. I mean, aren't needles supposed to "pain" a little? Instead of focusing on that, I meditate to try to send the stem cells to all the places in my body that need help.

My first stem cell IV shot

I fell asleep earlier than normal my first night, but awoke just a few hours later in a sweat that would have made a football linebacker proud. Pain was radiating through my whole body. I could hardly catch my breath to figure out what was going on. I took a ½ of my pain pill and it subsided enough for me to fall back into a sound sleep. But, every hour throughout the night (and what a long night it was), I woke up drenched. The intense pain had thankfully calmed, but the sweating persisted. I was slightly worried when I first woke up because one of my co-infections from the Lyme Disease often causes night sweats. However, a flare for me is always accompanied by heart palpitations and a headache, leaving me to wonder if I was running a marathon in my dreams. I was comforted when I realize this was just sweating -- no extra torture added. It wasn’t the Babesia co-infection rearing its ugly head.

By the time Dr. Geeta Shroff and Dr. Ashsih came the following morning, I was aching far beyond my normal I-must-have-the-flu-of-death feeling that always calls my body home. I told them about the sweating and I saw Dr. Geeta Shroff’s face transform. She was elated. Of course, I was confused. They see this as a good sign and when she explained further, it made perfect sense. Breaking a fever shows your body is fighting back, just like with a cold or flu. The stem cells were kick-starting my immune system and my body was responding. Paralysis patients receiving stem cells often experience their first sign of improvement after injury as sweating because it also stimulates the autonomic nervous system, which regulates heart rate, perspiration, etc. I guess some improvements come in different packages than expected. So, hooray for wet bed sheets (that I don’t have to change)!

Even though I was happy about the progress, I was still concerned about the excessive pain in my body. It was alarming especially since I had just had a decrease in my pain for the last couple of days. Dr. Geeta Shroff suspected it was from being dehydrated because of the night sweats. I had to take some pain medication to dull the aches and make life tolerable. But for the rest of the day, I drank bottled water with salt. She also gave me an orange which she poured salt on as I slurped the juice. I tossed and turned in bed for several hours after but once I was fully hydrated, my pain settled and so did my impending anxiety about what was going on inside my body.

Later, I was getting my first IV drip. It was finally time -- the “big guns” of stem cells. When they bring it up to my room for the unveiling, I stare at the bottle wondering how many tiny potentials for health are in there. I am on IV antibiotics now to help control the Lyme bacteria and give the new cells the best chance to stay healthy. Because of this, I have a catheter in my hand so they don’t have to keep poking me for each infusion. They can insert the needle into the small capped tube and make life easier. I close my eyes as the nurses hook everything up. I immediately feel the cold solution flood the vein in my hand and flow up my forearm. It warms as it reaches my elbow and from there, I feel nothing but hope. My iPod is on and my baby stem cells are getting a loud dose of my James Taylor addiction. It’s amazing how a 15-minute infusion can transfer so much life all through one little IV line.

The next day in physio, I continue my strength and balance training with Chavi. Next week I will integrate tougher balancing techniques like standing with my eyes closed. I’ve been walking straight for almost a week now with them open. Standing seems easily conquerable, although I know it’s easier said than done. I never thought there would even be a day where I’d have to worry about my balance. With all the thinking humans do, it’s amazing the things that never cross our minds (and probably for the best).

When my meals arrive every day, I am full of anticipation. Dr. Geeta Shroff has gone out of her way to change my diet. Sugar and starch feed the Lyme bacteria which gives the disease ammunition. So, we sit down together to figure out a way to feed my stem cells and starve the disease. She seems surprised when she asks me what I’d like to eat and I tell her Indian food (they are always balanced meals). She delightfully agrees, calls the chef and explains to him what I can and can’t eat. I tease her because my food comes in portions large enough for three. She half laughs with understanding and then says something serious like, “Good, now try to eat it all.”

Yes, it's really all for one meal...and bowls are full!

As I approach my second weekend here, I have to say that this is all I hoped it would be and then some. The little things that take time to adjust to are well worth this journey. The water was hot today and the traffic outside is unusually quiet. Friday night prayer from the temple in the alley is echoing into my corner window. I feel extra thankful for the rolls of Charmin stuffed in my suitcase against my will by someone who has made my world a sweeter place to live in (and not just because of the T.P.). I have nothing to complain about and everything to be grateful for.

The other day, my parents and I visited a couple of patients in the other hospital -- where they were receiving stem cells through a lumbar puncture for their spinal cord injuries. The hospital, which is used for its operating theatre, is older than the one we all stay in, with a playground out front. The neighborhood is of a different class, but the colors and life of India flourish there too. A hand-built ferris wheel has a dad busily spinning children. Two girls play jump rope in their vibrantly colored dresses. A squirrel eats a tortilla while his squirrel friends watch in envy. I just heard one of the men is feeling his leg and moving his toe for the first time in eleven years. I can’t wait until I see him and his wife again so I can hear all about it.

With the air chill here increasing, it feels more like winter each day. I bought a handmade beanie from a market last weekend. I wear the cozy jacket I had ready for the mountains before a snowboarding season I was never strong enough to enjoy. I envision myself one day coming down the slope, full of strength, smiles and triumph.

As Christmas crawls closer, I feel home tugging at me but I remind myself it’s not where I am meant to be for this year. For a Jewish Princess, I sure do love Santa and all the lights and food the holiday brings. To me, it’s truly the most wonderful time of the year.

For now, I will just have to remember that next season, I will be back to the holiday traditions, the barefoot cooking, the carols and the eggnog. This year, it’s Indian food, the local coffee shop that is my savior and the musical beat of honking horns outside my window -- day and night. If Christmas is really all about loved ones (near or far) and the possibility of miracles, then I suppose it’s right here in my heart.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog