Krishna Das at Omega Ecstatic Chant, Skyping with Ram Dass
I am finally breathing again. It has been a very long nine months since I've been able to do something as simple as breathe in and out, without a cough or wheeze, or reaching for my inhaler or nebulizer. Sorry to be graphic, but I was a major mucus machine. Several rounds of prednisone (see posts about my obliterated nervous system) and major amounts of $$ spent on nebulizer meds and rescue inhalers, along with every possible herbal and homeopathic supplement for inflammation and lung support. And why was my asthma so off the charts? Such a good question. This all started in January, mind you, so this has been going on for a LONG time. First thought it was a sinus problem, aggravating my lungs. Enter the Neti pot, which I think really did help (my sinuses, anyway). But my asthma still not so good. Enter the methylprednisolone. Nearly cleared it, but then I had a tremendous asthma attack, in March I think, so bad that my doctors initially thought I had pneumonia. Enter the prednisone. For way longer than I would like, and it never really cleared it completely.
So with all my doctors weighing in, it seemed that I was just having aggravated asthma due to a combination of one of the worst allergy/pollen seasons on record, and having had an extremely complex ten hour surgery that caused an inflammation reaction in my system. Sounds reasonable, doesn't it?
But I was suffering.
Waking every morning coughing. And coughing. Trying to clear my lungs, using the nebulizer, the rescue inhaler...and lots of herbal and homeopathic supplements. Some days my lungs would clear in an hour or two, and I would consider that a good day. Maybe I wouldn't cough so much during the day. Some days, many days, I would cough all day and my lungs would never quite clear. These would be very bad days. It would be very hard to eat on those days. It was hard to keep food down with all that coughing. And it was exhausting, so very exhausting. I couldn't do anything on a day like that, and there were so very many days like that. I couldn't lay down no matter how exhausted I was, as that would make my coughing worse. Sleeping on propped pillows was not good for my back, but better for my lungs. Let's just say I wasn't getting enough sleep.
So what did I do? I soldiered on. I was determined not to lose this summer too. (See previous posts about how I defeated breast cancer last year.) If there was something to do I got up and did it, only exceptions being if I was so exhausted that I could not move. Many days were like that, but I have some pics to show off that are a testament to how I dragged myself out, coughing or not, completely depleted or not, if there was something I wanted to do.
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| Pete Seeger at the Strawberry Festival in June |
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| Strawberry Shortcake at the Strawbery Festival...my favorite |
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| Pete still going strong (and picking up trash!) My hero |
I ate scrumptious and legendary strawberry shortcake and watched Pete Seeger and his musical friends at the Strawberry Festival in June, a benefit for the Sloop Clearwater.
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| Sloop Clearwater on the Hudson at Cold Spring |
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| Gandalf Murphy and the Slambovian Circus of Dreams |
I got to see my favorite local band, Gandalph Murphy and The Slambovian Circus of Dreams, not once but twice. The first time was at an outdoor benefit concert in July in Cold Spring, their home town. The Sloop Clearwater showed up that day, it was a sight to see. Then we got to see our Grand Slambovians again a couple of weeks ago at the Towne Crier. It was their best show ever (to date!).
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| Happy Smiley dog |
I spent as much time outside as I could. We got new chairs, with umbrellas attached, so I could sit out and read without worrying about the sun exposure (I am really prone to basal cell skin cancers, from all the radiation I received when I was younger for Hodgekin's Disease). My dog, as you can see, liked our outside time.
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| Gurudev's harmonium, just waiting for him, at Omega in July |
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| Beautiful butterfly on Omega campus |
I spent a glorious weekend at Omega with my Guru, Yogi Amrit Desai, and his daughter, my mentor Kamini Desai in July. It was amazing to be with them one year later, and cancer-free. I was with them at Omega last summer when I received the breast cancer diagnosis. It was the best place for me to be, and one year later it was like coming full circle. With them I am always home. As always I was with my "Gurubahin" or Guru Sister, Rekha, who I love with all my heart.
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| My beautiful niece's hair, braided after slipping down the watery slide! |
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| A rainy Lake Mahopac, we got off the deck just in time! |
I spent a week in August driving back and forth to my hometown as my brother and his family came to visit. I got to spend real quality time with my niece and nephew, and my brother too. They live down south and I don't get to see them very often, I hadn't seen them since they came up last summer. Web cams can't replace real hugs! It was so hard to say goodbye to them, but I will be seeing them again very soon, in October. More on that later!
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| The Newburgh waterfront, Hudson River |
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| Full moon rising over the Hudson |
My friend Dorrie and I spent a couple of fun-filled Friday evenings in August on the Newburgh waterfront. A nice drink at an outside bar, great music, dinner outside overlooking the Hudson. "Girl Time" we haven't had since last year, since before I was diagnosed. We were in sore need of it, and were so grateful to have it.
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| Precious one day old calf at the Dutchess County Fair |
Kathy and I had our annual trip to the Dutchess County Fair, and basically we ate our way through the day. It was such fun, and it was fun to eat all kinds of things we never really eat. Let's hear it for sugar! The zeppoles were sooooo delicious. We got to see lots of cows, goats, sheep, horses, and well...more cows. We love the cows the best. And we came home with some very pretty scarves, they were such a deal.
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| Deva Premal and Miten at Omega Ecstatic Chant on Labor Day |
I have to say one of the most amazing things I did all year was on Labor Day. Kathy and I went back to Omega for their special all day session of "Ecstatic Chant". It was supposed to start at 2pm and end at midnight, it probably didn't get started until about 2:30pm, but it didn't end until about 1:30am. I was given a great gift that day. I woke up feeling pretty energetic, and I wasn't coughing at all. And I didn't cough all day. Not at all. Not through chanting, really, all day and into the wee hours of the morning. I still don't know why, all I could think of was that I was smiled upon, I showed up to sing the Names of the UnNameable...so I was given a pass for the day.
It poured all day. It was the weekend that Tropical Storm Lee sent it's rains up to the Northeast. Whenever there was a break, a short one or for meals, and coming and going...we got soaked. When we left to go home, walking to the car, it was pitch black and the Omega walkways had become streams. I think we were pretty much floating from the kirtan, I was soaking and up to my ankles in water and didn't really care. The parkway on the way home had a nice layer of water on it, and the rain was torrential. Thankfully I wasn't the one who was driving! Kathy, you are an amazing driver.
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| My best pic of Krishna Das was of course the one where someone started to walk in front of me! |
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| Skyping on the big screen with Ram Dass |
The day started with Deva Premal and Miten, who were beautiful, and continued with many others, culminating in the evening with a Skype session with Ram Dass (see the video clip at the top, sooo sweet!), kirtan with Krishna Das, then Jai Uttal with the Manipuris, then the Manipuris had their own part to play. They were last, and we stayed til the very end, even though they had gone way overtime. They were infectious and tremendous! If you can keep people chanting and dancing past 1am, when they've been doing it since the afternoon, you know you're rocking. I loved Jai Uttal, his kirtan was so unique, with some chants having a reggae sound. I found that a lot was taken from his new album "Queen of Hearts" which sounds amazing...and I have only listened to the free clips so far! It will be in my iTunes library very soon.
But my absolute favorite, my love, was Krishna Das. His chanting has such an effect on me. It makes me so calm. Which is so helpful when you are buzzing on asthma meds. I read his book "Chants of a Lifetime" and had absolutely loved it. I loved it so much that I started reading only a page or two a day, because I didn't want it to end. I brought the book with me, and after he was done for the evening, and they were setting up for Jai Uttal, I asked him to sign it. I told him how much the book meant to me. What he wrote was beautiful, he was so sweet and kind, and we shared a precious moment. KD you are "All Love".
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| Finally, water. Lake Canopus |
The one thing that took us forever to get to do was to spend a day waterside. Eric and I finally got to do that, in late August. We spent a quiet, peaceful day at a lake nearby. It was a little cool for getting in the water (for me), but Eric had a nice dip. (I'm also still a little uncomfortable with getting into any water other than my shower because of the skin grafts.) The day ended too soon.
I appreciated every single moment of every one of these days. I also got to class once in awhile, and did what I could do and honored where my body is. And shared breakfast with my sisters. And got to see a few movies, and had lunch with some dear friends. I worked very hard to have these moments, but I had some embarassing moments also. I felt like I sounded like I had TB or something, and was saddened to think that some who didn't know me might have thought I was sick and spreading germs. I wanted to wear a sign that said..."I'm not sick, I have really bad asthma!". I did tell some people that.
I couldn't make any malas, though. The asthma meds made my hands shake. I can't begin to tell you how much I missed making my malas.
And so, after nine months of coughing, you may be wondering, how is it that I'm breathing well again, and not coughing? Well, I had gotten to the end of my rope. I started feeling very down, and wasn't able to push myself to do much of anything. With all the tropical weather, the coughing had gotten even worse and I was just so uncomfortable. I started to think, really think. Had anything changed around the time I started coughing in January. You see, we had tried to think of everything, had the carpets cleaned, had the dog bathed and groomed, changed asthma meds, made some dietary changes, added supplements...nothing made it better.
The only thing I finally could think of, the day before yesterday, was that I had started taking Arimidex in late November. This is the estrogen reducing medicine I need to take to keep the cancer from recurring. I had thought of this before, almost as a half thought. At the time, whenever it was, I pushed the thought away, thinking an estrogen reducing drug would have nothing to do with my lungs. But this time, being at my wit's end, I did a search for possible side effects.
Lo and behold...persistent cough.
A call to my oncologist, and being off of it for two days, and the cough (and mucus) is nearly gone. Just some remnants of it. With my history of being an asthmatic, combined with the knowledge of this particular side effect...when I started having all these respiratory problems, which "persisted", should my doctors at SK have caught this? I don't know. Part of me thinks so. I know they are human, and aren't infallible. But after nine months of fighting to have at least some quality of life, I'm having a hard time with this. Mainly, I'm overjoyed and relieved. So excited that I can move forward now. But I had started having flashbacks to when they couldn't figure out what I had when I was fourteen, and I was constantly coughing. And when they finally figured it out, it was Hodgekin's Disease. Which took three years to cure. So this had gotten pretty heavy.
All I can do is be grateful for what is, right now. And what is, is that I can finally breathe. Something so simple, that we take for granted, until we really can't. My hands will stop shaking and I will be able to make malas again.
I can finally get my strength back. I have a lot of work ahead of me. We have to figure out what drug I will be able to take to replace the Arimidex. More possible side effects, I'm sooooo not happy about that. But I don't want to get cancer again.
Right now, I am so relieved that I will be able to make my trip to Florida in October. I was starting to think that I wouldn't be able to go, that I was coughing way too much, and at times felt my airway was blocked. Not safe for traveling alone. But I can breathe now! I will be able to visit with my family, and spend more than a week with my Guru at his ashram. When my time there is done, I will be a Yoga Nidra Facilitator.
So, once again, another novel-length blog post. Thank you if you've read this far. I can breathe!
