A night of social dancing

Yes, really it was!

Finally, after 9 weeks of nothing I got out and just danced.

I have a very funny recording of my plastic surgeon giving me permission to dance and saying that there is nothing I could do at this point that would delay my healing.

At this point, it is what it is.  Everything is actually healed, it is just that the skin has not yet closed.  Because even though in the end the skin let go and caused the wound to open more than it was originally, everything underneath the skin is healed and nothing I do or don’t do will cause things to ‘open’ or be worse.

In fact, the activity may be beneficial as it increases circulation to the site and promotes healing.  Even wearing a bra is beneficial as it will lift the ‘noob’ up off of the chest and allow air to get at the wound.  At this point, the plan is to keep an eye on it and see how it progresses healing on it’s own.

Hallelujah!

So, I bit the bullet and took the opportunity to go to one of social dances I usually attend tonight and see how it went.

It went great. Truly and completely.  My mind is still trying to process everything.  I didn’t stay long, and I certainly wasn’t dancing steady but the main thing is that I danced.  And I wasn’t really holding anything back.  I even did a jive.

Certainly I tired quickly and surely I am definitely out of shape, but there were some interesting positives too.  I am definitely lighter on my feet, faster, and have a lot more control of my momentum.  In a lot of ways, things are almost easier because it takes less effort to do the same things.

The funny thing that happened (well maybe not fun for my partners) was that I kept accidentally stepping on my partner’s toes in Standard–because I am not use to being so close without my belly between us.  That is going to take some getting used to for sure.  I have no idea how that is going to translate to dancing standard with Boss.

He was at the social dance tonight and we got to do a rumba to try it out and it went really well.  It even attracted the attention of some of the people I usually dance with, which surprised me, although I am willing to assume it was more that I haven’t danced in so long.

I can’t even begin to explain how much just a little bit of dancing has completely lifted my mood.  It is such a profound difference after so much time and so many complications.

Speaking of complications…

There is a small storm-cloud on the horizon.  Monday my surgeon is going to insert a drain back into my abdomen because of the amount of fluid that is collected there.  Unfortunately, on top of everything else I went through on the weekend, by Sunday night my belly had filled back up with so much fluid my pre-surgery pants will barely do up, and it hasn’t drained since. I feel like my skin might burst open if poked too hard.

The small silver lining to that is that my surgeon is going to allow me to dance even with the drain–provided what I do doesn’t pull at it and interfere with it.  It’s actually good for me to be active with the drain because firstly it encourages circulation of the fluid (instead of just collecting as I sit), and secondly it forces my body to adapt to my regular activity as it heals.  I will have the drain until the amount draining is below 30 ml in a 24-hour period, or the amount stalls and stops diminishing.  To give you an idea–during my surgery when the attempt was made at closing the wound, the surgeon drained more than 300 ml from my belly.

So jive is probably going to be out for a while (I can see the ‘bouncing’ being a bit of an issue) and it’s going to take some adapting to figure out how to dance while supporting the drain, but with a little luck (and I am due for some!) my body will adapt, the amount draining will decrease rapidly and I can have it removed. Social dancing will also be off limits as long as I have a drain, so I am very glad to have had the chance to dance drain-free tonight.

For both the wound and belly issue–if they don’t resolve on their own–I am facing surgery to fix them.  For the wound I may need a skin graft to cover the gap in the skin, and for the belly it may be necessary to stitch closed the gaps left by the removed tissue to keep fluid from collecting.  I am cautiously optimistic right now that neither measure will be necessary.

My return to work has also been delayed another 30 days, although that also has the do with the potential return to hormone therapy which will be discussed with my oncologist next week and how I might react to that if that is what is decided.

All of that aside, I have finally scheduled my first lesson back for Wednesday and a tentative plan for when my lessons will be from there.  Boss and I are meeting on Tuesday to discuss goals, and figure out a plan of action for getting me back in shape and moving me forward.

After 9 weeks, it is such a relief to know I have at least something to look forward to, and that there is indeed light at the end of the tunnel–even if it is way off in the distance.  It took almost all week and a lot of introspection and thought but I am finally beginning to rally myself together and pick up the pieces of my life.

One day and dance at a time.

 

Infection

Yep, I really am that lucky.

I was so excited to have my wound closed and looking forward to a weekend volunteering at a competition.

Friday was a pretty good day–except that for some reason the stitches on my left side didn’t ‘dry up’ like the right.  I called my surgeon’s office to ask if this was something to be concerned about and was told to keep an eye on it and that my surgeon was out of town until Saturday.  I explained I was going out of town myself and it was decided I would see my surgeon on Monday if the issue persisted.

Volunteering at the competition on Friday night was interesting and fun, but also hard at the same time.  It really brought home the reality that I still can’t dance and I am still pretty restricted in what I can do.  It was a lot harder watching others do what I love, especially the heats I would have been competing in myself.  But I grinned and beared it, and only told Boss I was feeling upset, which was no surprise to him.

I did dance one cha cha in the ‘Jack and Jill’ competition.  For those who are not familiar, a ‘Jack and Jill’ competition is a competition that mixes and matches partners.  Basically, everyone signs up as a single, and then you meet your partner for the competition on the floor and end up competing with someone you have quite possibly never danced with before. It’s all in good fun and I was glad to get at least one (although admittedly rather tame) cha cha in. It was really the highlight of my weekend :).

Unfortunately, things went downhill from there.  Long story short, I woke up with an obvious fever and all the stitches on my left side were red, hot and swollen, and leaking fluid.  The redness also had traveled down my chest some and through more than half my left ‘noob’.  I had been at this long enough to recognize a big problem when I saw it.

I called my surgeon’s office and was told that yes, I should go directly to the ER to be seen and probably get some IV antibiotics.  And so, that was the end of my weekend away.  By the time I left the ER, it was late and I was pretty exhausted, so I had to cancel volunteering and missed the second night of competition.  I spend the evening in my hotel room watching hockey in bed.

When I got back home today I had to go back to the hospital (in my home town) to be reassessed.  A little bit of luck was on my side as my surgeon was on call and in the ER when I arrived, so he saw me right away.  He took some swabs and basically confirmed what I had guessed–there was an infection on the left side, and worse, one of the stitches had let go and the wound is not open–although only in one spot and only about 1 cm.  There is nothing he can do right now except wait.

I was worried that the traveling and things I did on the weekend caused the wound to re-open and the infection.  He told me it was highly unlikely anything I did or didn’t do would have made a difference.  It was always a toss up for him whether to close the wound or not because he knew it was possible it might not hold.  There just isn’t quite enough skin to close the wound and there was too much tension and stretch for the stitches to hold.  There is also a further issue of lack of blood flow to the area because it is all transplanted tissue, which also makes healing difficult.  He told me that as I had fluid drain from the wound constantly since the surgery on Thursday, the hole probably opened during that night.  Part of me wishes he had told me during the surgery that there was a lot of tension and that the stitches were a bit fragile.  Although infection is infection–it was probably brewing in the wound before it was closed, despite all the precautions we had taken to prevent it.

So now I am back to taking antibiotics, and wound care to wait and see if this heals up.  I still have all my stitches and some of them are holding, there is just the one spot that is a little open, but it is also not as deep as the old wound.  With a bit of luck, hopefully all the fluid will drain out and it will start to close on it’s own by mid-week with the antibiotics.

I can’t even begin to express how disappointed I am.  This was supposed to be the beginning of the end of my wounds.  I guess it still is, but the infection certainly set me back, and it caused me to cancel on my commitment to the competition.  One more thing my health interfered with.

The surgeon did tell me I can still go back to dance, but I am really hesitant right now.  The lingering fever and fatigue from the infection aside, I definitely don’t want to risk the wound opening up any more. It just seems safer to wait for now, and see what the surgeon thinks when I see him at the end of next week. For now, I am waiting and seeing how things go.  I will see the wound care nurse again tomorrow and I know she will be able to give me a good and frank assessment.

Not the weekend I was hoping for, but at least there was one small sliver of light with a quick cha cha with a random stranger.  It felt better than I thought it would to do a little dancing and that was a surprise in itself.  It makes me a little hopeful for when I can really get back to dance.

 

The difference

It’s completely unreal.

By Saturday, I felt like myself again and was sleeping in 4-6 hour blocks with less medication.  I have energy again.  I have been out for walks.  I have been experimenting with latin moves in my kitchen.  I even tried on my 2.5 inch heels (that left much to be desired!), and discovered my feet seem to be smaller, or perhaps they just aren’t in a state of perpetual swelling from dancing so much.

I am going to bed after 8 pm and waking up voluntarily before noon.  I am tracking all my side effects (mainly an average of 17 hot flashes in 24 hours). I am looking forward to returning to dance and can actually picture doing it.

Again, unreal. Who knew that something could affect your life that much?  I have no idea what will happen when I see my oncologist in February, but I hope I don’t have to ever go back to that state again.

Tomorrow, my surgeon is going to stitch closed my final wound so it can heal.  After 7 weeks of having a bit of a gaping hole, I have never looked more forward to stitches in my life!  He is also going to drain the collection of fluid in my lower abdomen which should release some of the pressure I am feeling.  Hopefully it won’t come back–fingers crossed!  In general my abdomen has been feeling better every day and less swollen during and after activity.  I take that as a good sign :).

This weekend, I am going to travel to the mainland to help out as a volunteer at a competition.  I have mixed feelings about that.  On the one hand, I am eager to support and help out the local dance community.  On the other….

This competition was supposed to be my ‘comeback’ competition.  In was the last competition I did last year before starting chemo, after my first surgery.  Way back at that time, my treatment was supposed to be all finished by October, giving me time to get back on my feet and prepare for this year.  That was before I found out I needed a second surgery, and my timelines got all moved back substantially.  So it is a bit of a bittersweet competition for me.  Watching others compete is going to be hard.

But I will be ok.

The main thing is that I am well enough to travel and help out.  I could even do a little bit of social dancing (although it would be my first real social dancing since surgery–not sure if I am ready to trust my barely healed body to a random stranger who’s dancing ability I don’t know), but we will see.  I think it will be a good thing for me in general to just get out and do something a little new.

Boss is competing with 3 students this weekend, so I am patiently waiting for the weekend to pass to get some direction and suggestions for my return to dance.  I really feel like I am starting over in some ways.  My body is different enough that things just don’t want to move like they used to, and it isn’t being very cooperative in the few things I have done in my kitchen.

Going back to dance shoes is going to be another challenge.  My feet and ankles are really not sure about this whole ‘change of balance’ thing and from the little I have done I can tell that the muscles in my legs, ankles and feet will have to be redeveloped and restrengthened for the new lower centre of gravity to support my movements.  The muscles definitely have to move in different ways now to compensate.

Hopefully early next week I will have a better idea of a plan worked up and negotiated with Boss.  Right now I feel a little aimless, but I know it’s temporary.  Boss has lots of ideas, so there is lots to do.

I hope the stitches heal quick and easy.

Coming up for Air…

At least that is how I feel today…or like I am about to.

It’s been another difficult day, but it finally brought forward some positives.

Today started out as another day of exhaustion. I went for a 15 min walk yesterday and today getting out of bed was another struggle.  Even with the change in time for taking my hormone therapy I was still having trouble sleeping–but I was able to determine that the main thing waking me up was intense hot flashes.

Since it had been 3 days since I talked to the oncology nurse and there wasn’t much difference in how I felt I called her again today.  Finally, we had a conversation that had some progress and she had my chart in front of her to refer to.  After we went through everything I was experiencing (again), she finally agreed that the side effects I was experiencing were extreme and went to talk to the oncologist to get a plan for what to do (Yay!).

She called me back, and finally there is a plan that makes some sense!  My appointment with the oncologist has been moved forward to the first week of February (his first available), and in the meantime I have been told to stop taking the HT.  I also have to track the side effects I am experiencing from today until I see him as some of these side effects, like the hot flashes, I was having before I even started the HT and the HT seems to have made them worse.

I have been having menopause symptoms since my second chemo treatment (almost a year now) and my blood work confirms my ovaries have shut down, even though I am just shy of my 37th birthday.  The chemotherapy I was on can cause premature menopause, although it is rarely permanent.  It’s apparently very hard to tell because chemo can shut down the ovaries for up to 2 years before they wake back up again, so only time will tell.

But that is the reason to keep track of the side effects I am having–to see what is what, and what they should be treating and how.  I am also going to be able to have a good frank conversation with my oncologist to discuss the actual benefit of the HT since I have had a double mastectomy (which is something they didn’t consider when they first prescribed the HT back in August prior to radiation–and the fact that I have almost no breast tissue now needs to be considered).

I can’t describe the relief I felt when the nurse told me I could stop the HT until I see the Oncologist.  I am hopeful that in a couple days, as the HT clears out of my system, I might start to get back to feeling like my usual optimistic, positive and energetic self.

Which brings me to my other news for today–I am cleared by the surgeon to return (slowly) back to dance!

He is going to bring me in for small surgery sometime next week to close up the wound under my left breast (I have never looked forward to stitches so much in my life!), and also drain some fluid that has collected in my lower abdomen.  It will all be done with local anesthetic, so it shouldn’t be to bad, and finally the last of my wounds will be on it’s way to recovery!

We also had a conversation today about doing revisions in the future.  During my surgery, the surgeon did try to do a reduction on both breasts, but because of how my abdomen was shaped and how the blood flow worked I am only one cup size smaller–basically almost all my old bras still fit me.  I also have some ‘puckers’ of skin under each breast that had to be left in order to facilitate how the incisions needed to be made for the reduction.  There is also a decision to be made about whether I want nipples reconstructed or not.

For right now, the plan is for me to take the time to go back to losing the weight I gained during chemo and the rest of the weight I want to lose to get to my goal weight before my next major surgery to do a reduction.  The reason is simple–because my ‘breasts’ are now all belly fat, as I lose weight they will also go down in size–much more than real breasts would.  So, he doesn’t want to make them small now and have them disappear on me later!

I completely agree with that, not that I am in any hurry to rush into another surgery right now!  Since my surgery I have already lost a small amount of weight, despite essentially not doing anything, and I want to get back to being active and finally get down to my goal weight.  In addition to going back to dance, I also hope to return to strength training again and (my version of) running.  Baby steps though.

Which brings me to my last point for tonight and a post that is much longer than I intended.  When I got permission from my surgeon to return to dance, I realized I actually have no idea where to start!  Well, first I need to find my energy (here’s hoping it comes back as the HT leaves), but then beyond my ballet exercises….seems like so many possibilities!

I did have a very brief conversation with Boss last week about coming back and I know he has some definite ideas, many which are probably different from my own.  I guess some thought on my part and a discussion with him is in order to figure out how to do this.

Time for a big breath of fresh air, me thinks.

Rough days

It seems like it has been a year since I last posted.

Unfortunately, things seem to be getting more challenging, not better.

I am suffering from severe side effects, in the form of insomnia, fatigue and depression from the hormone therapy.  It took me 4 days of calling the cancer agency and 2 ER visits before I was able to talk to someone (an oncological nurse) who listened and started working with me to try and find a way to manage these side effects.

My oncologist is vehement that I must continue taking the HT and to try and just work my way through the next 3 months to see if my body will adjust to the side effects.  Yesterday it seemed I was faced with spending the next 3 months lying in bed hoping to find the energy to get out, and that was a devastating thought.

Thankfully, I finally got a hold of a nurse who listened to me and asked me about the severity of my side effects, instead of just asking what they were and telling me they were normal.  She suggested some strategies to try and manage the side effects and get me some energy back.  I feel marginally better today, and hopefully tomorrow will be better.

I couldn’t dance right now if I wanted to, even if I was recovered enough from my surgery.

But I am a fighter, so fighting is what I am doing.  I feel worse right now than I did during chemotherapy.  It has to get better.

I can understand that I need to take this medication to reduce the chances of cancer coming back, but I have to be able to also have some sort of life to live while taking it.

3 months has never seemed so long.  I just have to adjust my thinking that I am not yet in full ‘recovery’ from cancer until I see how my body adjusts to the HT.  It’s just another treatment like chemo and radiation I have to endure and once I have THEN I can move on with my life.

I hope my body adjusts soon.  My mind is so over dealing with cancer.

I just want to get back to dance and dance myself silly running through routines over and over and over again.

6 weeks

Today has been a bit of a disappointing day.

6 weeks is supposed to be a milestone for this surgery.  Most people are cleared to go back to all activities because they are basically healed up.

Not me.

I saw my family doctor today and she put me on 30 more days of sick leave.  She also told me she won’t end my lifting and activity restrictions until all my open wounds are healed.

I can understand her concerns–she doesn’t want me to accidentally open up my wounds more and cause them to take even longer to heal, which I can fully agree with.  But I have been seeing a nurse daily for 4.5 weeks and the wound under my left breast has not gotten any smaller or shown signs of closing.  It’s clean, the tissue is healthy, but the wound is going to take a lot more time to heal.

To top it off I am now officially unable to tolerate any form of adhesive on my skin.  So we are at the point where all we can do to protect the wound is place a non-stick dressing over it and hope the elastic on the shelf bra of my camisole keeps it in place–at least until the rash on my skin from the adhesive clears up.

I can’t even begin to describe how frustrated I am right now.

I see the surgeon next week and hopefully he will lift some of the restrictions–such as the wearing of the elastic binder around my waist (which is causing irritation), and allowing me to do some more static dance exercises.  There is even a possibility that he might stitch close the big wound that is open to help it heal faster.

On top of the healing issues from the surgery, I am having one other big issue, and unfortunately that is not likely to end anytime soon.

I am not tolerating the hormone therapy very well.  In short, I am miserable.  Every muscle in my body aches. I can’t sleep. I am an emotional wreck. I have a hard time getting out of bed for my appointments.

It is possible that the hormone therapy is also delaying the healing.

Unfortunately, until I have been on the HT for at least 3 months the oncologist will not consider taking me off of it.  It takes that long for the body to adjust to the HT.  So my only option right now is to keep taking it and hope.

None of this is made easier by being so restricted in activity.  On top of everything else, because I am doing so little I am gaining weight, even though I am trying to watch my diet closely.  The more I sit on the couch, the more I feel like I am expanding, and that is not a good feeling.

At least I am getting out for a 20 min walk every day and doing my ballet exercises.  It is something.

I guess I just miss my energy.  I have less energy now than I had during both chemo and radiation.  That really concerns me.

I can understand the reasoning behind why my doctor wants to keep my activity restricted.  But at the same time my mental health is slowly going down the toilet, so I am not sure that is helping my healing any in the long run.

The one thing people keep saying to me over and over is ‘But your body has been through so much…’.

I am really tired of hearing that.  I know my body has been through a lot.  I was right there going through it with it.  Knowing that, and having people constantly point that out is not helping me be patient right now.

I am trying to stay positive and be happy for the little things I can do–like walk and ballet, but after 6 weeks I really want to feel like there is hope that I can start moving forward and return to some of the things I enjoy.

Right now, I don’t have that.  I just hope my appointment with the surgeon is much more positive than my appointment with my family doctor today–and that is what I have to look forward to.

Last minute note–I just got a call from the surgeon’s office–no more binder!!

It’s the little things that help…

 

 

New Year

New work to be done!

Mainly, recovering from the past year.  As much as I would like to think that breast cancer is behind me (and the cancer part definitely is!), there are a lot of lingering side effects from treatment that will take close to a year to work out.

I am hoping that’s an over-estimation, but I am trying to manage my expectations.

First order of business is to continue healing from this surgery.  I am down to only one spot being bandaged and cleaned daily, but still have a few other spots that are ‘almost’ there.  I still have to wear the elastic binder around my waist, but even the nurse today commented that he wasn’t sure what help it was doing.  I have to wear it at least until I see the surgeon again on the 14th.

Second is getting through the first 3 months of hormone therapy.  After less than a week of taking it, I can tell it’s affecting me.  I am emotionally all over the place and the hot flashes are bad–especially at night.  I have to give it 3 months for my body to adjust and then go from there.  I am hoping my body adjusts sooner.

Third, I hope, will be a slow return to work.  I see my family doctor on the 7th and she should have a better idea then when I can start back.  With it will hopefully come a referral to physio and/or a rehabilitative specialist.  Prior to getting sick I did regular weight and strengthening training to supplement dance and I am really eager to get back to it.  It’s especially important as I have an older permanent back injury that needs to supported through my core (hence another reason why dance is so important!).  I have missed work and look forward to getting back to it.

Finally, will be my return to dance.  I don’t know when it will be yet as it really depends on my healing.  I still have a gaping ‘hole’ that is about 1 1/2″ that is healthy, but doing very little healing.  Unfortunately, it is in a place that could easily be pulled and stretched doing dance, and until it is closed up, I don’t see me being allowed to go back to full dance.

The surgeon is the boss on when that will happen.  He has allowed me to do small stability exercises so far, and I am hopeful at my next appointment he will allow me to do more with my lower body and perhaps return to my latin ‘rocks’ as long as my upper body isn’t too involved.  We will see how it goes.

I have been giving a lot of thought to how I want to return to dance, taking into account how I am feeling.  I haven’t discussed it with Boss, but I think once I get a ‘go ahead’ in January I am going to take the time to sort and figure things out for myself first.  Then I will return to lessons with him in February.  I need to give myself time to figure out all the new sensations going on with my body right now, especially through my abdomen.  I also need to get more used to my lower centre of gravity (I feel about 6 inches shorter, even though I am not!), and see where my balance is at.  I think because my centre is lower I am actually a little more grounded–but we will see.

2 weeks to go before I see the surgeon again and it seems like forever.

In the meantime, I have put my fitbit on again, and now that my mom is gone stocked the fridge with my ‘singles’ food fare.  I am looking at this 2 weeks as a chance to get a ‘jump’ on my diet before I can go back to regular activity.  I am doing my ballet exercises daily and my arm endurance every other day (right now, 2 mins per hold is a challenge–and I used to do 3 mins each no problem!).

Let the rebuilding begin.