The Return and End of Smooth

Stopping dance proved to be disastrous for my health.

The day after I decided to stop, I had a complete breakdown and ended up at the ER.  I didn’t think it was possible to get worse than I was, but believe me, it was much much worse.  With everything else, the medication I was on gave me violent mood swings as levels of brain chemicals went up and down until a stable level was achieved.

It was the longest and most difficult 3 weeks of my life.  I really thought I might die, and to be honest, I wished the cancer had killed me.  It was a very very dark time.  On top of everything else, stopping dance actually made the grief I am going through over losing my fertility even more poignant, because I felt as though I had absolutely nothing left to hold on to. I had created a giant hole in my life that I could no longer fill and the little bit of joy and meaning I had in my life disappeared.

But somehow I got through it.  It took a lot of talk with mental health experts, time for medication to kick in and dose adjustments, and a complete reevaluation of my life and dance.

On top of the medical staff, I also (with their encouragement) talked with other dancers in the community (pro/am and amateur), non-dancers and Boss.  I took more than a week to go through and write out all of my thoughts on dance–what was important to me, what I wanted to do with dance, what I felt was missing, what needed to change, and where dance fit into my life–or where I wanted it to fit.  I wrote because that was the best way to express myself and let it all out.  It took me a week and was more than 10 pages, but it helped me find a place for dance in my life–even pro/am.

It took a while, because my energy levels have been quite non-existent and it took some lessons of just talking things through with Boss before I was ready to come back, and we were able to agree on changes that worked for both of us, and hopefully will help to address the issues I was struggling with.

There will be two significant changes to the structure of my lessons.  First, one lesson a week will be devoted to working on showcase/performance routines.  This is to give me an opportunity to be creative and collaborative in dance, something I was missing a lot.  Second, half a lesson every other week will be spent on ‘dance appreciation’.  Time to discuss dance, look at videos of different levels and styles, and develop my ability to think critically about dance and recognize various aspects of it.

My practice is changing as well.  I will still do some drilling, but it will not be the sole focus on my practice, it will be about 2/3rd of it.  The rest of the time will be spent on working through steps and routines as I want to.  The goal of that is to mix time spent drilling, which is more meditative, repetitive, and not requiring a lot of thought, with other aspects of dance that require me to ‘figure out’ and think through what I am working on.

I am also scaling back everything I am doing.  I will be focusing only on international style, and full gold routines for competing.  I will not be competing in smooth anymore.  Boss had wanted to turn the smooth routines into showcase routines, but to me it would be rubbing salt in the wound to work on the routines, but not be able to compete them.

And so ends smooth for me.

It is yet another casualty to cancer.  In all honesty, it hurts a lot, but at the same time I am grateful to still have some way to dance.  My relationships have also taken a huge loss and been damaged through the difficulties of the last month and I do fear they may never really mend.

I saw the surgeon and my hysterectomy will be likely end June/early July.  It will be 4-6 weeks of recovery off of dance and work.  It will be another slow and careful recovery.  The small silver lining is that with a little luck (and I am definitely due!) it will alleviate many of the symptoms from the hormone therapy as I will no longer need ovarian suppression and my hormone levels should fluctuate less allowing my mental health to stabilize.

In the meantime, I wait for a solid date for my surgery and attempt to hold my life together as best I can until then.  Every day is still a struggle, but the past week has seen me become a bit stronger and able to return to strength training.  This week allowed me to return to dance.

I am scared that everything will fall apart again before all of this is finished.  It’s taking a lot to control the depression and anxiety, and I am still in constant pain.  The hot flashes are happening in cycles indicating my ovaries are not as suppressed as they should be.  I have to have another shot in May, but the surgeon told me her goal is for it to be the last one. I truly hope so.

I am taking things one day at a time and trying to live my life as best I can.  I am so far able to work and keep up with it.  Strength training makes me feel better, not drained or exhausted and I am seeing genuine improvement in strength for the first time in almost a year.  In the middle of everything, I managed to finish the first 3 courses of my Masters, and am now working on my 4th.  So far, my lessons have been positive and also leave me feeling better than when I arrived.

I have slowly returned to myself and hope to maintain it.  I have lost much in the last month and I continue to grieve for my fertility–something I expect will continue until after the surgery when it is truly gone.  Things are rocky, difficult, but manageable.

At least for now.

I am back.

Another Surgery….

I have been quiet while having to deal with some health issues related to the hormone therapy.

I found out today that I will be having a total hysterectomy end June/early July.  The sincere hope is that once my ovaries are gone, my hormones will settle down and I can get back to feeling like myself again.

In the meantime, the hormone therapy has more or less crashed my entire system.  Because stopping the hormone therapy is not an option (the shot lasts until May), I have had to be treated with medication for the side effects.  Almost 4 weeks later, I seem to be finally starting to get to a functional point.

I say functional.  The psychiatrist who is treating me calls it ‘presenteeism’–it’s one step up from absenteeism.  Instead of being absent from my life, I am there, just not really participating.

To be perfectly honest, I have never felt worse in my life–including during chemo, radiation, and after surgery.  And I feel helpless to do anything about it, I can only manage it.

Slowly, the mental health issues are improving, but unfortunately the physical ones are not.  I am exhausted.  I am ready for bed at 6 pm after a full day of work.  It takes almost 12 hours for me to feel refreshed.  When I am awake, my energy is fairly fleeting.  It has improved a little in the last week (likely due to the medication), but it is still very restrictive.  I also ache all over.  If you have ever had aches from a fever, that is what I feel like all the time.  That in itself is exhausting.  Usually by 2 pm I have to take some ibuprofen to take the edge off.  I also have frequent headaches and right now the hot flashes are fairly frequent.

At least now, I have a general time frame to aim for when things might get better.  I say might because there is no way to know how my body will respond to surgical menopause versus chemical menopause, but there is a good chance that without my ovaries causing fluctuating hormone levels, things will stabilize and be more controllable.

This also makes very real for me something I have been avoiding–I will never have children.  It was highly unlikely before, but this makes it an absolute ‘no’. In many ways I am grieving for the children I will never have, and I have to acknowledge and give myself time to do that.

To be perfectly honest, I am not really sure if I ever would have had children or if it was something I wanted to do, but I took comfort in having the option. There is a lot more to that, but there are some things I need to keep to myself :).

I do have some dance news.

After I decided to stop dancing, I did go and advertise for a partner in the area where I live.  The response, I am sad to say was two offers for sex and one guy who was genuinely interested in dance, but who also was looking more for a relationship.  It was disappointing, but not really more than I expected, to be honest.

I had a fairly significant breakdown shortly after making my decision.

As part of that, I spent a lot of time discussing dance and what it means to me with my health care professionals.  They encouraged me to reevaluate and to talk to another dancer in the community.  They also pointed out that since my system was so depressed, no matter how much I might want to, I would never be able to see the good side to dance, only the bad.

It took a lot of talk, both with an amateur dancer who has also had breast cancer and previously danced pro/am herself when her partner was unwell, and talking with Boss, in addition to the health care professionals.

In the end, I decided to start writing.  I wrote about what led me to dance, what I enjoy about it, what I want from it, where I am, where I want to be, what I think of pro/am, how I want to learn–in short, 10 pages about dance, going through everything.

It was the most comprehensive evaluation of dance I have ever done, and it occurred to me that throughout my sickness I have had to reevaluate almost every area of my life–but I have never reevaluated dance.

It was long overdue, and it revealed a lot about what I really want and it is quite different from what I was doing and the direction I was going.

I don’t want to say more on that for now, but the evaluation is on-going.

One of the biggest obstacles I am encountering right now is actually the lack of energy, but I hope it will get better.

We shall see.  But now I seem to have something of a timeline for when this nightmare might end.

And so I fight on…

The strength to walk away…

I walked away from dance yesterday.

It was and continues to be the hardest thing I have done.

The worse part is that I am not walking away from dance, I am walking away from pro/am.

I don’t want to keep pretending that pro/am works for me any more.

I used to think that at least pro/am gives me an option for dancing and that it is better than not dancing at all.  But I was wrong. At least if I am not dancing at all I don’t know what I am missing.  With pro/am I am constantly stuck at the side of the dance hall by myself watching amateur couples practice and work with their partners.  I am constantly reminded of what I lack (a partner), and I am forever on the outside of the dance community.

I don’t really have control over my dancing.  Budget is the first determining factor (because of the high prices), and once that is determined, Boss decides the rest.  I decide how much I practice on my own. Yay me–I can be the poster girl for individual practice.

This hasn’t come up all of a sudden, it’s been a long time coming.  I have been trying to ignore it and to just keep telling myself–pro/am is better than nothing, at least you can afford pro/am, someday you won’t need to do pro/am anymore.

But those lies just aren’t working anymore.  It’s not how I want to dance, and I am ashamed of that. It’s making me miserable and it is time to accept that.

There have been a few things that have brought this about.  First is my health and the effects it is having on all areas of my life.  It makes me feel even more isolated and alone and I am still waiting for treatments to make some sort of impact. But as I wait and try to work through it, it just keeps highlighting to me how alone and unsupported I when it comes to dancing.

I had coaching lessons with two different coaches last week, one for standard and the other for smooth and latin.  While there were some really good points for me as an individual dancer, I realized that most of the lessons, especially in standard, were addressing issues that had to do with couple connection and how we move together.  As I advance in dancing, that is coming up more and more, and there is nothing I can do to improve or work on that by myself.  At worse, I felt that the lessons were more for Boss than they were for me, although I do know it would make my lessons better.

One of the reasons I dance is because I want to be part of the competitive dance community.  I want to feel like I belong somewhere and that there is support from that community when I need it.  Last week I say a concrete example that I am not part of that community and when I asked I was told it wasn’t personal, it was just that they never see me–which is true.  Before I got diagnosed, I was at almost every competitor’s practice and spent time with the competitors.  They even put together a card and chipped in for flowers when I started chemo.  But I had to stop doing those practices because of chemo, and I have never been really given the opportunity to return to them consistently.  All of this just highlights how different I am from the other competitors, and I really don’t want to be different.

On the weekend there was a social dance that I went to and I was really proud that I managed to stay the whole time without feeling overwhelmed after a day of coaching lessons.  It was a huge achievement for me.  But that dance also starkly reminded me how long it’s been since I really danced and did more than just drilling–and again that I have no control over that.  I have never been a social dancer.  I used to go to social dances just for the extra cardio, but as I was sick and able to attend them less that benefit went away.  I also have to admit that I just don’t enjoy doing the same 3 or 4 basic steps over and over, and that is what the leaders here know and do.

There are all sorts of other similar things like that, but in the end, none of the problems have to do with actual dancing.  It’s all about how I have to dance, and how that makes me feel.  I want to be stronger and to think that all of that just doesn’t matter and that I should just enjoy the dancing I can do in my lessons and on my own in the studio.  I want to be stronger so that working on my own is enough.  But I can’t pretend that it is anymore.  It’s just not for the type of dancer I want to be–which is and always has been a competitor.

I am very ashamed to admit that pro/am is not enough and that I don’t have the strength to keep fighting this uphill battle and that after everything I have been through, in the end the best option is to stop doing it.

I feel empty and gutted.

It took everything I had, but in the end I found the strength to walk away from something that clearly wasn’t working.

I have to keep walking.

Standard trials

Yay, a dance post!

It won’t be a long one, but I wanted to post a little bit about dance since I have been quite ‘gloom and doom’ lately.

I had a coaching lesson in standard yesterday that was quite interesting.  The coach I was working with comes from a background of thought and approach in dance that is quite different from what I am used to. The approach certainly simplifies things in comparison to others.

We focused mainly on foxtrot and on the body movement through foxtrot steps.  We talked a little about position, but mainly it was about connection, smoothing the steps and moving through them.

The biggest difference was mainly in what I was thinking about when we were dancing.  I wasn’t thinking about my hands, arms, or hips.  I was more focused on upper body–chest and shoulder blades–and didn’t even really realize it until I thought about it some after the lesson.  We covered a few different specific steps in my routines to see what differences there were in the approach and it was pretty interesting.  It was the same…and yet not.

I haven’t worked with a male coach in standard before, so it was interesting to get that perspective.  My mind is still trying to process all the information, but Boss took lots of notes which he said he would share with me.

I started my new medication yesterday and for a little while, I did feel better–thankfully that lasted through the lessons.  My head felt more clear and able to process.  Unfortunately, by about 7 pm my system seemed to crash and I got really overwhelmed.  I couldn’t finish practice because couldn’t concentrate anymore and nothing made I was doing made sense and that led to a panic attack.  I think in general my system got over-stimulated, and since I had just started the medication there is far too little in my system to sustain any sort of effects.

I can’t say if I feel better or worse today, but perhaps a little more clear-headed.  I am just trying to give the time spent with the coach yesterday time to process as Boss asked me to try to describe and/or replicate what I was doing for my lesson on Monday.  Unfortunately, I don’t think I will be able to really do that in a way that will be meaningful to Boss, but I will try. Or at least try not to let it overwhelm me.

Baby steps to try and get past this latest health hiccup.  More coaching with a different coach in smooth and latin later this week.

Faking interest

That’s what I feel like I am doing, in many things.

That is making everything I am doing–work, school, dance, life–much harder than it needs to be.

On Tuesday, I received the news that the genetic testing showed a mutation on the  BRCA2 gene.  This is a big part of the explanation for why I got breast cancer at 35.  It also means I am at high risk for Ovarian cancer as well–and there is no definitive way to test for that.  In a nutshell, my ovaries are now going to be coming out, especially since they are misbehaving so much.

So, once again I am waiting for surgery.  I will see a gynecologist in early April and from there I should get an idea of when my surgery will be.  This is separate (at least for now) from the surgery I am waiting for to complete my reconstruction.

This also means that the hormone therapy is even more essential and my oncologist does not want to cut it or stop it, if at all possible.  The small silver lining is that once my ovaries are removed, I will not need ovarian suppression any more and my hormone levels should stop fluctuating so much and should settle down.

But that doesn’t solve the problems of the side effects in the meantime–the most difficult is the depression.  In the past two weeks since the change in hormone therapy I have pretty much spiraled downhill and I can’t seem to pull myself out.  I have lost interest and motivation in almost everything I do and all I want to do is sleep all the time and hide away.

It took a lot of phone calls, but finally I was heard and next week I will see psychiatrist at the cancer agency to look at options for medication to try and relieve the depression and other side effects from the hormone therapy (including fatigue, body aches, difficulty concentrating and focusing). The advantage of seeing a doc at the cancer agency is that they are more familiar with the different therapies and how they work with different meds.  I did see my family doctor this week, but she was reluctant to prescribe anything knowing there are some limitations and possible interactions with the hormone therapy.

So, in the meantime, I am faking it.  Pretty much faking my life. I am going through the motions and trying to pretend like I care and am interested and am not exhausted.  I have considered cutting back on everything, but knowing this is a (hopefully temporary) situation, I don’t want to make any large decisions as I will likely regret them when I am feeling better.  I just don’t think I can trust my judgement right now.

After tomorrow, I am on vacation for 2 weeks, and I am in a good position for school as well, so all of that helps.  I have cut back a little on small things and I am not doing anything extra, so I guess I am already coping.  I am trying to stay rested as being tired makes everything worse.

I am hopeful that Tuesday there might be some light at the end of the tunnel, although I am realistic in knowing that there are no quick fixes and any medication will take at least 2 weeks before it has full effects.  My fingers are crossed that the side effects will at least be manageable.

In the meantime, I am trying not to derail my life so it will be recognizable when I come out the other side.

I just feel like an imposter.

Struggling

I am filled with fear that the hormone therapy is having very negative side effects.

I did end up going to see the doctor again today about my sinuses and he prescribed some antibiotics as the weekend made clear that they are now quite likely infected.  With some luck, I should start to feel better by Wednesday.

But my fear is that the sinus infection is really only going to clear up the pain and pressure in my sinuses, but that the fatigue and achiness, and general listlessness and depression will remain.

I do expect some side effects from the hormone therapy, but at the same time I have to be able to have some quality of life and at least right now I don’t have that.

I am willing to believe that some of what I am feeling is due to being sick, but at the same time it would be naive of me to think that it is all the sinus infection.

My biggest concern is that I am pretty sure the hormone therapy is making me depressed and that to counter that it will be necessary to take anti-depressants.  I want to be clear that it is not the stigma of mental health that worries me, but the need to add yet more chemicals to my body to counter the effects of chemicals I am already forced to add to my body.  On top of that, anti-depressants have their own list of side effects and I am limited in those I can take because of the hormone therapy.  It’s just a big overwhelming mess and a road I really don’t want to go down.

But if I am realistic with myself, I am struggling a lot more than I should be right now.  I don’t want to get out of bed in the morning.  I have started a new (old) position at work and I can’t seem to generate any excitement about it.  I go to practice dance and I wonder what the point is and I have no interest in what I am doing.  I am going through the motions like a robot.  I am working on a masters in a subject I usually feel very passionate about but can’t seem to motivate myself to do the readings or assignments.  I am usually very consistent about getting to the gym and doing strength training but I have no motivation for that either.

And while it seems like I am doing a lot, I have not been able to do even half as much as I was able to do previously.  I am very frustrated with that.  On top of that, despite being on the medication to promote weight loss for 4 months, my weight has barely budged–even with good (and prescribed) diet and regular exercise.

As time goes by, I find myself wondering more and more if I should just accept that the life I knew is over.  I should just be resigned to being overweight and heavy and feeling terrible.

So many people have been so supportive, but I feel rather guilty when they tell me over and over that I am so strong and brave for fighting and conquering cancer.  Yes, I was able to be strong and brave and had great support, but it seems that the price you pay for beating cancer is to feel miserable for the rest of your life. That is the truth of  my experience.  I am constantly beat down by my health no matter how hard I work to make it better and I am tired.

In fact, I am honestly completely exhausted.  I haven’t been sleeping well since my last shot to the point where I have been waking frequently throughout the night.  I was almost able to stop taking my insomnia medication (a big step back), but now I am finding it necessary to increase back to a full dose to see if that helps me sleep through the night.

I am not completely sure where to turn for this.  I almost have too many doctors.  Is this a problem for the oncologist? My family doctor? The mental health nurse?  It seems like if I go to one, I will be referred to another.  I am not scheduled to see the oncologist until April, and I am to see my family doctor next week.  Because of the sinus infection, I feel like I have missed far too much work due to illness, which is one of the issues I was sent back to this position to fix.

Regardless, it is obvious to me that I cannot continue living like this.  Part of me want to wait a couple days and see what goes away with the sinus infection, but the other part is very concerned that nothing but the pain and pressure in my face will leave.

I find that I am constantly trying to find something to get excited about–whether dance or work or school–and everything keeps falling short.  Once again I had a lesson where I found myself unable to concentrate and Boss had to repeatedly make changes to what we were working on.  At one point, I had a hot flash so bad while working on a standard exercise I had to push Boss away because I felt like his body heat was suffocating me.  That said, we do have a section of a rumba routine to add to the waltz routine from last week.

I just want things to get better and stay that way for a while.

That isn’t too much to ask, is it?