Being Thankful

The last two weeks have been busy.  I had my 1 year transplant birthday and a few days later had some friends over who I have not seen for over a year. 

My family was supposed to come over but my brother and his family was/is evacuated from Drayton Valley so they have been very busy (and stressed), my sister-in-law and other brother were sick so we needed to take a rain check. 

Yesterday we got notice that a friend passed away.  We haven’t been in contact much over the years but we were really good friends 20 years ago and having him in our lives impacted our life path a number of times.  It is a mixture of sadness that he is gone and happiness that he was in our lives and left lots of good memories.

Today I spent the day with my mom and sister.  It was a beautiful visit and a great time with my family. Mike and the kids made me a beautiful flower bed (Mike made it and the kids helped with flowers) and even though the boys were not home, I was able to have nice visits with them. 

These last few weeks have really emphasized mortality and how lucky that I am to just be here.  How friends and family change as we grow older but still leave impacts on us. I think my visit today was so good because we just enjoyed each other’s company, we were embracing the moment. I am thankful for the friends and family I have in my life.

It’s just Kung Fu!

This last week has been a variety of appointments with different teams.  I met with an Occupational Therapist for a “brain fog” assessment and tools to use to help with this.  This condition has been weighing heavily on me as we start the conversations about returning to work.

I have noticed my ability to remember things is impacted the more that I try to do things.  The more stressed I am, the worse it gets.  Luckily there have been so many adaptations available that I decreased the stress.  I do not remember many of my forms so I have been focusing on two and getting my body and my brain back to some type of normal before expanding.  On our 1-1, Sifu Rybak told me to continue working on my forms during my class and not worry about learning any new forms.  This was a huge relief and confirmed that I was on the right track.

My “brain fog” assessment went well.  I was a little below normal but high functioning. She asked what I was doing to help cope.  I told her about Tai Chi, ACE exercises, KF classes, meditation, starting gentle yoga for cancer patients, do memory and word games, starting a cancer QiGong class and a Brain Fog class.  I make lots of lists and lots of alarms to ensure I don’t miss things (and I still miss things).  She told me how I was doing absolutely everything that she would have recommended and was quite surprised.  I was happy but at the same time frustrated.

I was hoping for a magic bullet but it was just another instance of slow and steady progress is the correct pathway to improvement.  It really is just Kung Fu, my path is a bit different than yours but the foundation is the same.

Turning the OFF to ON!

We often talk about recognizing our strengths and weaknesses.  One of my strengths is when I am on, I am ON.  I am positive, energetic, wanting to do more.  Unstoppable!  The person that I want others to see, the person I like to see.

On the flip side is my weakness - when I am off, I am OFF.  I hide behind the glass rock.  I do not blog, I miss classes, I am not motivated.  The more this occurs, the deeper I get lost.  There are many things that can turn your switch OFF.  The difficulty I am having is that not only am I recovering physically, I am recovering mentally as well.  Individually these are a challenge but when both are off, I am lost!  The last few weeks I have been struggling with physical setbacks.   Now add this with "brain fog" which can occur from chemo or radiation (I had lots of both) and a meeting about returning to work in the fall and my mental capacity was also overloaded.  This resulted in sadness, depression, sleeping 4 hours in a day, and no motivation.  I was not engaged in classes (there is a difference between attending and engagement) or I missed classes entirely.

The one action that I am trying to build as a strength is when to ask for help and from whom.  My trigger point is my sadness and lack of engagement.  The lack of engagement in my Kung Fu quickly becomes a lack of engagement in other daily activities increasing my sadness.  It really is a downward spiral that gains momentum the longer it is left unchecked.  I reached out to a variety of people.  My medical team put me back on prednisone for the physical issues, my parents came to help around the house, I'm working with an occupational therapist on the brain fog, referred to a psychologist for the sadness and depression, joined some cancer support groups and am taking advantage of the classes they offer.  I continue to do my exercise classes, booked a 1-1 with Sifu Rybak and worked on my hand and weapon forms.  All of this helped move the OFF to an ON.

The biggest step is recognizing when I am OFF and then knowing what it takes to move that switch to ON.  Also to know that the actions I take today may not be the actions I need the next time.  Hopefully this will help to make those OFF times shorter.  I am the strongest advocate for my physical and mental health and I know that I can not do this alone.

See you on the virtual mats!

Walking the Fine Line

My recovery has come a long way and now I am in the difficult section where my progression is not immediately apparent even though I continue to work hard. This resulted in doing actions that could have had a serious negative impact but luckily they were only minor.

I was participating in my ACE (cancer exercise) program and I was feeling pretty great so I pushed myself hard.  Isn't that what we are supposed to do, push ourselves hard, going beyond our limits?  This is the fine line that we all walk because I ended up pushing too hard causing myself to get sick after class and then I was very sore for the next couple of days.  At first my ego went "you must have been a slacker because you should have been feeling this sore sooner" and then my brain was "are you really this stupid? Is this working out soreness or have I activated my GVHd and it's affecting my joints".  Luckily it was just working out soreness.

The next ACE class I was the only one home, so I had to push that ego aside and dial back my exercise, not to the extent that I was going through the motions but just to the point that I was pushing myself just to that fine line.

Each of us has a line that we push beyond to expand our training but when you are recovering from injuries that line is not only lower than previous but it is also thinner.  It doesn't take much to cross it and during your recovery if you are impatient, it can also set you back.  We must alway be working to find that line and just pushing ourselves slightly over it.  Even healthy, you need to make sure to push past your line but too far too fast or you could cause injuries.

It's like a yo-yo, push yourself and check to see how you feel.  Too much? Retreat a bit, push again. Not enough, push a little harder.  I have to constantly evaluate what my body CAN do, not what it did previously.  That is my currently line.  

The second part of this post is what to do when that line may not be moving even when you're training.  Do I blindly trust that my line will move if I continue to do the same actions?  My answer is "NO".  I learnt through the years of training that there are times when I need an outside opinion so I booked my 1-1 to talk to Sifu Brinker and discuss where I was at.  (I should have booked that sooner, my bad!)  The other was from my girlfriend that let me know during our walk that I was walking faster and farther than previously.  So although I was not seeing any change to my line, I was able to validate that my training is working even if I don't see it.  

I am not sure if I will ever get back to the line I previously had. As long as I keep pushing my current line, I will continue to improve and who knows where that will lead!

Minor setback

This blog is late but I have a few reasons.  It started Sunday night/Monday morning with my first trip to the ER since my transplant (almost 10 months ago) for a fever.  Good news is that is a pretty good streak, bad news is a cold is what caused this.  A minor cold caused a high fever and now the other symptoms are setting in but it always could be worse (it’s not Covid 😊).  Also my UAH ER trip was just over 3 hours and that included X-rays, IV antibiotics, blood draws, swabs, fluids, etc.  I really had great care (had to plug our great medical people out there).

Now it doesn’t take much to shake my emotional state and the last few days I was more tired than normal and that caused some anxiety and self pity.  I know it’s okay to feel these things and to acknowledge them but as someone who likes to look at the positive, it is really hard to blog during the down times.  This is not fair to me or to you.  I need to transparent with the good and the bad so I can be true to myself.  

Once I acknowledged my current feelings and lack of activity, I needed to make a plan to move forward smartly. I wanted to do my own exercise program today but Mike just raised his eyebrow as any exertion would cause coughing and a runny nose.  Sometimes it’s the outside advice that helps us make those smarter decisions.  So I made a small checklist of a few doable things and slowly worked on those.

Can this relate to Kung Fu and your journey? Absolutely.  There will always be something that will take that great streak you have (or a not so great one) and send it sideways.  It will be your attitude that makes you elevate and allow you to jump back in the wagon.   But you need to be recognize the negative feelings that occur when you fall off.  Recognize and accept them but do not let them rule you, get help if needed.  It’s the same concept when your mind wanders during meditation, recognize and accept it and move on.  As long as we are moving forward we are making progress.

Embracing an injury or setback

Working through an injury or a setback allows for us to focus on different aspects that were not as noticeable as they are now.  In my example, as I have been working on my 18 temple motions and Tai Chi, I have noticed that my grounding and centering are changed by minor movements.  These minor shifts have a major impact as I easily lose my balance.  In Tai Chi, as soon as I overextended my centre, I would stumble.  This would occur as I shifted forward and my knee became too far over my foot.  Another place was during my cat stances and my bow stances, if my shoulders were too far forward then my grounding on my back foot would not be solid. Previously I would have noticed these issues at the end of my stance but as I have to be slower, I am noticing these nuances as they occur.  This way I only need to go back two or three steps to find where the problem starts and can correct it easier.  Although I would rather be without my setbacks, they are improving my Kung Fu and the 6 harmonies that would have taken me so much longer so I am embracing each moment.

When is the right time?

This week has been filled with lots of naps and recovery.  I will feel good and have a busy day and the next day is pretty much a right off with the amount of sleep that I require but that is to be expected.  My doctor warned me that my tiredness will get worse as we are now decreasing my prednisone (this is the second of three immunosuppressants that we are weaning off) but I'm excited for these little steps.

The immunosuppressants that I am on is due to the acute Graft vs Host (aGVHd) disease that I developed shortly after transplant.  My primary caregivers (Mike and my best friend Joanne) knew that I was had severe aGVHd but it wasn't until I had to update some of my clinical trial documents last week that I found out that it was Grade 3 aGVHd (out of a 0-4 scale).  The doctors didn't know what they were going to do if these three drugs did not work as the mortality rate for Grade 3 and 4 is very high so I consider myself immensely lucky to be here today.   

So how does this relate to Kung Fu?  If I waited for the right time to do something, I would probably still be waiting to do anything.  My personal goals this year are to help me with mortality and gratitude.  Tai Chi, meditation, readings on these areas are ways that will assist me to continue to move forward, slow as it may be.  The other personal goal is a community project.  Something that I can do that will assist others.  How do I use the precious time that I have been given to make a difference to others?  

If I waited until I was "better", I would be missing out on the time that I have available now.  It might not be a lot of time but I have have some time so why not use it.  I have started my brain dump on things that interest me for my community project and reached out to some knowledgable resources to bounce ideas around.  

I will focus more on my community project on the next post but the take away from this post is "NOW is the right time".  Don't wait until you "think" you are ready, figure out how you can proceed with what you have right now.