Author: REJ

Précipité

The midterm surprise was “précipité” which is not in the ballet dictionary (Gail Grant) but means “to precipitate.” It looks kind of like a mini glissade and it’s a step that prepares you for another, like a grande jeté. 

I figured it was time to talk about dance class, specifically Ballet! I’ve survived the first eight weeks of college and taking Ballet five days a week with the addition of some other styles.

The other word that got me caught up was “shortened”…I totally blanked! Of course, once I saw the answer I thought, “good one dummy!” The french term for “shortened” is Raccourci and technically not of the Cecchetti Method but of the French School of Ballet; yes there’s a difference.

My Ballet II professor is right, my pedagogy book is going to be huge. I can’t help but be wordy. I figure the more I write the higher chance of either getting partial credit if I’m wrong or extra credit if I’m right. There is a method to my madness.

I think my answer for précipité might get me full credit and not partial, although I didn’t write “to precipitate” I said that it was a step that precipitated another which is exactly what it is. Who knows, I’ll find out next week. Next week I’ll know my grades in all my classes, I’m not going to lie, I’m a little anxious!

The eight Cecchetti Body Positions

Croisé Devant
Quatrieme Devant
Ecarté
Effacé
A la Seconde
Epaulé
Quatrieme Derriere
Croisé Derriere

I need to message my friend that knows the proper key strokes to get the accents on my letters correctly. I know them I just don’t know what key strokes are required. I’ve looked it up a few times and not found the proper way of doing it. Seems like a simple thing to do, but I guess not.

A combo across the floor I use to teach…From the corner, B+ (upstage foot,) balancé x 2, tombé, pas de bourrée, glissade, grande jeté. I was wrong, it’s not a glissade, it’s a précipité!

Overachiever

At some point I have to figure out how to find some time and relax. School is stressful, of course, but the constant worry that I’m going to forget something is taking its toll. I have nine classes totaling 17 credit hours. Yes, you read that right…NINE classes!

  • Ballet I (1 credit)
  • Ballet II (2 credits)
  • Biology (4 credits)
  • English (3 credits)
  • Ensemble I (1 credit)
  • Fundamentals of Theater (3 credits)
  • Improvisation I (1 credit)
  • Jazz I (1 credit)
  • Modern I (1 credit)

I keep telling myself, “just one week at a time,” and so far that has gotten me through the first six weeks of school. But midterms are literally less than two weeks away and I have to admit, I’m a little freaked out. To say I’m a classic overachiever would be a huge understatement. Who I’m trying to impress is beyond me because I’m an adult and I don’t have to do this. I had a career I could go back to if I wanted to so I don’t need to torture myself. Dancing is my joy though, I have to have it in my life in some meaningful way and this is the healthiest way for me to get it back into my life.

There’s a plan, something in the future, a goal for me to attain. NO! I’m not telling you what it is; it’s a secret…Shhhhh!

School is enjoyable, for the most part. Of course, we never like all of our professors, and that’s fine. I’ll only have to have this professor for ten more weeks then we can part ways and I’ll know not to take one of their classes again. This pace is testing my body and what it’s capable of and in classic overachiever style, I get frustrated when it doesn’t want to cooperate with me. I have to remind myself regularly that I’m still healing; it hasn’t been a full year since the heart transplant. The thought of slowing down does enter my mind, weekly, but I can’t. Time is ticking away and I’d like to make the most of it.

It’s Been Awhile

It’s been awhile since I’ve written anything here, however; I’ve been doing plenty of writing elsewhere, in college!

After my last trip to Salt Lake City for a scheduled biopsy to check for rejection, I started school, again, almost 30 years after I started college the first time. The first time I majored in something much more practical than I am now; my major is Dance Performance. I don’t have any plans to run off to New York to become a professional dancer at my age, but I do intent to teach. I’ve been teaching ballet for a long time, but I felt that now would be the perfect time to go back to school and actually get a degree in it.

It’s been stressful and my body hurts, but I’m enjoying it; all the dancing is amazing! Thankfully I’m a little ahead of the game right now in that I know a lot of the ballet vocabulary already, but as I move to the more advanced classes that will change, I’m sure. Regardless, I’m making my flashcards like my professor has advised and I run thru them every night just to make sure I have them down and I know the movement (even if I can’t actually do it!) I have to keep notes on the combination for each class or I’m sure to forget, but I am surprised that I’ve been able to retain them by memory pretty well so far. I’m sure that will get more difficult as well.

I feel a little bit strange being one of the oldest students (there is one student in the department older than me,) and basically being old enough to be most of my classmates mother. I’m hoping that will change over time. Who am I kidding though? When have I ever really fit in anywhere?

It’s Official…

…I’ve had ENOUGH!

Holding it together these days hasn’t been easy, and I’ve cracked a few times, maybe a few too many.

Medically speaking I’m doing OK. I’m almost 10 months post heart transplant and the doctors still haven’t been able to fine tune my medication so that I’m not always adding or removing something I take daily. Some of it makes me sick, some of it makes me feel weak, and the big one makes me feel exhausted for no reason at all. I know my body is strong; how could it not be? I have Primary Amyloidosis (AL), which by the way, has a 6 to 12 month mortality rate, I’ve survived over four years. I had a heart transplant because the AL put me in acute congestive heart failure and caused a lovely case of restrictive cardiomyopathy. Now I’m told I have Osteoporosis in my lumbar 1 – 4 and am close to having it in my hips as well. All that is a result of the chemo therapy I received for the AL and the anti-rejection drugs I take for my heart.  I’ve been hitting the gym for several weeks now. Not knowing at the time I started about the Osteoporosis, it was a good thing I did. The most effective treatment for it is weight training, which is what I’ve been focusing on to build up the strength I lost while I was sick. But my back and hips hurt and although weight training is ideal, not necessarily at the pace I’m going at. I can’t win with this body of mine.

Then there’s the food. The trainer at the gym wants me to eat a certain way, which I’m totally willing to do within the parameters of what I can and can’t eat being a transplant patient. In reality it’s not that different than how I was eating before the transplant. However, my stress level is so high I can’t eat, and not eating is just as bad as eating too much. How do I get the calories I need in a day without throwing it all up because I’m so stressed out my stomach is in knots? I’m trying, but there isn’t a week that goes by that more stress isn’t placed on my shoulders by someone.

There’s also a family component to all this. Issues far too complex for me to even begin to figure out, and I’m not 100% sure I want to. I have two married sons, one of which doesn’t have much to do with us and his wife even less. The other and his wife live with us, which creates it’s own set of issues that I can’t address because it’s causes me even more stress than I can handle. I have a mother who I’m afraid of and I couldn’t tell you why, other than I hate the sound of disappointment in her voice when I can’t do what she wants me to. I still have no idea who my biological father is, which causes me more hurt than my mother can imagine. But I keep the peace because I think that’s what I’m supposed to do? I don’t know?

I left the church I’ve been a member of for over 10 years. That’s been a gut punch to say the least. I think what hurts more than anything is they either haven’t noticed or don’t care; either one isn’t great. I’ve tried to get past it and attend church, but I can’t get out of my mind how little they did when I needed them the most. I’ve gotten a handful of phone calls in the last five years, but no significant support for my “church family.” Now I’m torn about finding a new church because I don’t want to be hurt like that again. I surrendered myself to God in that church and the keepers of the church were not very good stewards of my vulnerability. How could I go back to that, and how do I try a new church not knowing if they will do the same thing?

School is starting in about two weeks and I go back and forth over whether or not I can handle it. Some days I feel confident that I can do it and others I think it could be a huge waste of time and money. I’m 47 years old getting a degree in dance! What was I thinking? I’m not sure I’ll be able to keep up, but I’ll never know unless I try. The fear in me wants to stop before I get started, but then I’ll always wonder if I could have made it.

Every way you slice it I have stress coming from all directions. Some of it I may have control over but some of it I never asked for, but have to deal with it none the less. I lose sleep at night thinking about all of the things I should have done or didn’t, or should do, but don’t feel confident enough to stand my ground. On the surface I may appear strong, and my body may be, but my emotional state is not. I wish I had the emotional confidence to tell the people in my life what I need to tell them and not have their reactions affect me so deeply. And, of course, the ultimate fear is that they will all stop coming around all together and I’ll be physically alone and emotionally alone at the same time.

Amyloidosis Speakers Bureau

I have the distinct pleasure of being a member of the Amyloidosis Speakers Bureau, a part of Mackenzie’s Mission to bring awareness to not only the general public but the medical community about Amyloidosis. I have my first speaking engagement in September at the University of Illinois College of Medicine Rockford. I’ll be speaking to a group of about 100 to 120 second year medical students about my journey from diagnosis through treatment. Below is my short bio that goes out to medical schools where I might speak. This is the ultra short, “down and dirty,” Readers Digest version, and of course you have to know the title of my bio…

A Fist Full of Pills

My name is Rayna and I’m a 47 year-old female with primary amyloidosis (AL) with cardiac involvement that is currently in remission.

I exhibited 9 of the 12 symptoms of primary amyloidosis (AL) initially: arrhythmia, diarrhea, tingling/numbness in hands/feet, weight loss, edema, feeling full quickly, shortness of breath, and enlarged tongue.

In addition, I was also experiencing: chronic atrial fibrillation, tachycardia, and long Q-T syndrome.

I started by seeing my primary care physician in 2012 at the age of 40 for an annual check-up. I was referred to a local cardiologist because my blood pressure was slightly elevated and my heart rate appeared to be irregular and too fast. Over 19 months I saw a local cardiologist as well as an electrophysiologist from Salt Lake City (Intermountain Medical Center). During that time, I started being treated for congestive heart failure and had the first of two cardiac ablations for chronic AFib. The treatment by both doctors was ultimately ineffective and I was referred to Mayo Clinic in Rochester, Minnesota.

I visited Mayo Clinic twice before I received a definitive diagnosis. I saw several doctors, most notably I was seen by cardiology and hematology, who both immediately suspected Amyloidosis. During my visits to Mayo Clinic I did 24-hour urine tests, a fat pad biopsy, a bone marrow biopsy, a right heart catheterization, several blood tests as well as numerous ECG’s, echocardiograms, and ultrasounds. The echocardiograms showed a thickening of my left atrium, which then led to having a heart biopsy that confirmed amyloid buildup. The Congo red stain confirmed primary amyloidosis with cardiac involvement (I was 42 years old). All other tests showed no other organ involvement; however, nervous system involvement was suspected due to a tremor I developed before diagnosis that I still have today. As an aside, at the time of my diagnosis the staging system for AL had not been established; however, if we were to go back and look at the progression of my symptoms, I was in late Stage 4 of the disease before I started receiving treatment.

Under the guidance of my hematologist at Mayo Clinic I received four rounds (16 weeks) of the CyBorD treatment with a local oncologist, however my light chains continued to rise. The doctors felt that I had two choices…stem cell transplant with a 20% chance of survival or do nothing and I would die within six months. Needless to say, a 20% chance of survival was still better than 0%. I then received Melphalan and an autologous stem cell transplant at the Colorado Blood Cancer Institute (CBCI) in April 2015 (I was 43 years old). At that time, I not only survived, but I achieved complete hematological remission and have not received any maintenance treatment since.

The healing time after the stem cell transplant took approximately 18 months, during which my congestive heart failure and AFib continued to get worse. I had a second cardiac ablation that almost completely resolved my AFib. In 2016 at the age of 44 I was referred to the Heart & Lung Transplant Department at Mayo Clinic for heart transplant consideration. In August of 2017 I was listed for transplant. After 427 days and transferring to a new a transplant center, I received a new heart in October 2018 at the University of Utah.

I’m currently 47 years old, have been in remission since April 2015, and am healing from a heart transplant.

Understandably, due to the nature of the disease and the lack of knowledge among general cardiologists, I was frustrated with the time it took to get a diagnosis. That being said, my cardiologist never gave up looking for answers and when he exhausted his knowledge base, he referred me to a facility that could offer me more than he could. I was also extremely frustrated with the medication used during the period before my diagnosis. Many of the common drugs used for congestive heart failure, AFib, arrhythmia, tachycardia, and edema did not work for me. We can’t know if the reason the medication didn’t relieve some of my symptoms was because of the AL or because I’m female, but it was frustrating none the less to constantly have to deal with side effects and the ineffectiveness of the medications during that time.

Lastly, what I can’t stress enough, is doctors need to learn how to say, “I don’t know” and do the appropriate follow-up to either find the answer or find someone who has the answer. Giving vague, non-answers is beyond frustrating when you’re facing a terminal disease.

Anyone who would like to see photos of my native heart can click here. Of course if you’re squeamish, I’d skip it!