I'm starting to feel like myself more and more each day. This past weekend, we went to the World Cup in Squaw Valley where I got to see many old friends from my Ski Racing past. The weather was beautiful and our very own Mikaela Shiffrin won two days in a row. What could be better than a World Cup on home soil with a U.S. champion to command it.
During my treatment, I often wondered if I would be able to ski again. The unknown of this disease can send you into some dizzying possibilities. I had whole brain radiation and 18 (WTH? 18!!!) chemo treatments EVERY week for the past 6 months. That's gotta leave a mark somewhere right? Would it be the radiation that messes with my balance that makes skiing anomalous? Or would it be the effects of treatment that would cause some sort of synapse collapse and would change the way I ski?
The exhaustion that chemo induces is pretty significant. Sometimes I had to rest just walking to the kitchen and no, I do not live in a large house. That exhaustion tends to lend itself to a very poor exercise program. On the first round of my breast cancer treatment, back in 2011, I was able to train and prepare myself for my black belt test. This time was different, perhaps due to the widespread proliferation throughout my body and brain, and some of the complications that occurred along the way. I did a lot of resting and avoided extensive activity because my cells just couldn't keep up. With that sedentary life, the muscles I spent a lifetime building and training have atrophied. I lost 18 pounds of hard-earned muscle which has affected my balance and my stamina. It's hard not to be that 20-something with endless collagen, elastin and spring and yes, I am aware that my age is directly correlated. However, the loss is not gradual but in sharp relief. The difference between last summer's 49 year old body and this year's chemo-destroyed, atrophied, 50 year old body, is a big jump. Without the muscle and balance I once had, I am uncertain of my capabilities. What sort of forces can I tolerate? How gung-ho should I be getting back to my regular activities?
Well, I started by attempting to ski at Squaw Valley this past weekend. I admit, I was nervous. Not because I would get hurt, or be unable to get down the mountain, but nervous that my brain may have forgotten how to tell my legs what to do. What if my nervous system, which just got bombarded with cytotoxin, didn't know how to tell my legs how to perform the tasks to ski? Skiing is a complicated combination of ankles, knees, and hips and feeling the snow under your feet. It was an interesting exercise in humility as I stood on top of Squaw Valley with my skis on, wondering if I could still ski without losing my place on the mountain or crashing into an unsuspecting tourist.
As it turned out, my first ten turns were...divine. It was just like an old friend. it came back almost immediately, and I got to experience that really cool feeling of linking giant slalom turns together and feeling the energy in my skis. It was great. I looked to my right and there was one of my former teammates, Adele, smiling at me. I had a witness! She's a coach in Sun Valley, so she knows a hacker when she sees one, but both of us knew that besides being a couple of old farts, we could still turn a ski at speed. It was a proud moment.
Then, there was no wind in the sail.
The muscles in my legs were aching, and I started to cramp. I was out of mitochondria. Immediate Bonk! Anybody got a banana? We took two more runs (because I was determined to overcome a little tired leg issue) and in the middle of my last one, I had to lay down. I had nothin'. My brain said, "Hey, let's go whip out a few gates and let these babies run!" and my legs said, "MEDIC!" The lack of stamina and strength was unbelievable. As much as I tried to deny that feeling of weakness and fatigue, there was no mind over matter. My legs just stopped working. It was crazy hard to ski one run to the bottom, and I was hoping I would make it before dark (hyperbole).
As I ruminate on this experience, I realize that I must be gentle with myself. I've been through an ordeal and apparently, you don't just pop back up, and ski like a rockstar from first chair to apres-ski. Nevertheless, I got those ten turns. I got to feel like my old self again for ten beautiful, energy-laden, linked ski turns which tells me that I didn't forget. My brain actually works and my muscles, despite telling my brain to screw off, can perform the movements needed to spark an arc. Shiffy may have taken the weekend, but victory was mine for one brief moment.
My husband took it upon himself to celebrate his first win. Yes, he beat me to the bottom (this time), but skiercross is a different sport. I still make better turns than he does.
I see a lot of air squats, hill climbs and deadlifts in my future. As I dig myself out of this fitness hole, I am comforted by the fact that there is a life for me on the other end of this. It's a new life that I have to adapt to, but it's a life. After the best doctors in the country tell you have invasive metastasis of breast cancer throughout your body and brain, you stop thinking you have a life before you. Each new day, I stop thinking that way. There's still so much life to be lived.
Tuesday, March 14, 2017
Impact
As a nurse, you see people at their best and their very very worst. I have worked as a nurse for 12 years. It's not a lot of years really except I worked critical care and the burnout rate can be sort of high, so I still pat myself on the back for making it 12 years. The real heroes of the healthcare world are those nurses and doctors and ancillary staff who stick it out until retirement. Half of them are a little bit crazy. All of them are committed to what they do with very few exceptions. Almost everyone I have ever worked with is good at what they do, and the ones who weren't knew it and strived to be better. I have been both a nurse and a patient and seeing healthcare from both sides of the bedrail is an interesting experience. It's quite funny. Wearing my scrubs, I felt unworthy and never knowledgable enough to have the privilege of what I did. Wearing a patient gown, I herald these people as heroes. I never knew how much my patients needed me, needed a person who stood for them and did all the things they couldn't do in a time of crisis. I see now why many of my fellow colleagues are a little bit crazy. They know how to be there for everyone but themselves. Today, I am far more proud of the nurse I used to be knowing that I treated all of my patients with dignity and respect. And yet, I am still working on how to be there for myself.
About a million years ago, I had a patient who came in complaining about chest pain. We got him on the monitor and performed an EKG and sure enough, he was having a heart attack. Not a really big one, but enough to be drawing blood and starting our protocol for Acute Myocardial Infarction. I was not the primary registered nurse and I was always a little cautious when it came to Acute MI's because they could be unpredictable without all the information. We were scrambling to gather the information via Chest X-rays, Lab Tests, EKG's etc. Suddenly, our conscious, verbal, patient with a glasgow of 15 grabs my arm and says "Help me." I look up at the monitor and he goes into a heart rhythm that is incompatible with life. He is coding. I look at him and tell him I'm there and promised not to leave him as I grabbed the defibrillator pads. He got all the usual cardiac medications and a few shocks to the chest and survived, but he remained unconscious. He was transferred to the ICU where rockstars would put his ailing body back in balance. I will never forget the fear in his eyes or the weak squeeze of his hand. He coded multiple times in the ICU and was resuscitated by the best in the business. They transferred him to a higher tertiary care center where he recovered enough to go home. He then died 8 months later (he chose not to be further resuscitated). He had an ejection fraction (how much the heart could pump) of 20%. A normal heart pumps about 60-70% and less than 40% is an indication of heart failure. His cardiac muscle was finished.
I know how he felt. His face, his eyes, his pleading, he knew he was close to death, and I was all he had in that moment when he grabbed my arm. At the time, I had no idea the impact I had on the moment. I thought I was just another nurse... but not to him.
Getting chemo each week, I see nurses in a crazy different light. I see them both as people and virtual angels. I would also observe other patients in the infusion center looking up at their nurses with admiration in their eyes. Their nurse was their strength. It's as if the nurse represents your last ditch effort and connection to the planet. I started to experience this global deifying phenomenon with friends who brought dinner, friends who drove me to San Francisco, friends who showed up at the most opportune moment.... with balloons and song. Just their presence had an impact on my mood and how I saw my future.
What I do with my life matters, to everybody. Not just in times of crisis, but times of friendship and gathering and sorrow. Everything ALL of us does has an impact on one another. Friends or not, family or not, strangers or not, we all affect the actions of this world, and we can't escape it. The choice to consider is what kind of impact do you wish to make? You're going to make an impact. Do you want to make a positive impact or a negative impact? Any efforts to manipulate that impact are yours to make, and even the best intentions go south. Side note: If I tell you "I love you" it's not because I want to ruin your life or wreck your marriage. It's because I truly love and care for your well-being and that includes all those you love and hold dear.... just to be clear. (yeah, there's a story. Someday I'll tell it.)
Our recent political environment has shown me that people are truly affected by the attack on their choices and how they respond to those around them, which in turn, makes an impact, and not always a positive one. I wondered what kind of impact I could make, being retired from nursing, but it wasn't about being a nurse at all. It was about being present. All you have to do is be present and suddenly, you just earned some hero points. It's so simple. Then there's these crazy people who buy a T-shirt with your name on it, or put a sticker on their car and turn you into a sobbing, grateful mess. Talk about impact. I'm going to make it out of this little Cancer hole I've jumped into and I will never forget a single person who impacted me in this fight, simply by being present. Determined, I will join the rest of you, having an impact, and I hope I have half as much positive impact as everyone has had on me.
However, I ask one thing of all of you. Never underestimate the impact you make on another human being. Your presence there at that moment feeds a HUGE bubble outside of what you think it does and your actions ripple through people like me. Then, and only then, people like me want to earn that presence, that kindness, that five minutes you took to make small talk at the ATM. I am amazed, still, that a kind word or action can turn into saving someone's life or making the end of one a little more peaceful. I am ever more amazed at how little it takes to make an impact on someone who is truly in need. The life you save may well be your own.
About a million years ago, I had a patient who came in complaining about chest pain. We got him on the monitor and performed an EKG and sure enough, he was having a heart attack. Not a really big one, but enough to be drawing blood and starting our protocol for Acute Myocardial Infarction. I was not the primary registered nurse and I was always a little cautious when it came to Acute MI's because they could be unpredictable without all the information. We were scrambling to gather the information via Chest X-rays, Lab Tests, EKG's etc. Suddenly, our conscious, verbal, patient with a glasgow of 15 grabs my arm and says "Help me." I look up at the monitor and he goes into a heart rhythm that is incompatible with life. He is coding. I look at him and tell him I'm there and promised not to leave him as I grabbed the defibrillator pads. He got all the usual cardiac medications and a few shocks to the chest and survived, but he remained unconscious. He was transferred to the ICU where rockstars would put his ailing body back in balance. I will never forget the fear in his eyes or the weak squeeze of his hand. He coded multiple times in the ICU and was resuscitated by the best in the business. They transferred him to a higher tertiary care center where he recovered enough to go home. He then died 8 months later (he chose not to be further resuscitated). He had an ejection fraction (how much the heart could pump) of 20%. A normal heart pumps about 60-70% and less than 40% is an indication of heart failure. His cardiac muscle was finished.
I know how he felt. His face, his eyes, his pleading, he knew he was close to death, and I was all he had in that moment when he grabbed my arm. At the time, I had no idea the impact I had on the moment. I thought I was just another nurse... but not to him.
Getting chemo each week, I see nurses in a crazy different light. I see them both as people and virtual angels. I would also observe other patients in the infusion center looking up at their nurses with admiration in their eyes. Their nurse was their strength. It's as if the nurse represents your last ditch effort and connection to the planet. I started to experience this global deifying phenomenon with friends who brought dinner, friends who drove me to San Francisco, friends who showed up at the most opportune moment.... with balloons and song. Just their presence had an impact on my mood and how I saw my future.
What I do with my life matters, to everybody. Not just in times of crisis, but times of friendship and gathering and sorrow. Everything ALL of us does has an impact on one another. Friends or not, family or not, strangers or not, we all affect the actions of this world, and we can't escape it. The choice to consider is what kind of impact do you wish to make? You're going to make an impact. Do you want to make a positive impact or a negative impact? Any efforts to manipulate that impact are yours to make, and even the best intentions go south. Side note: If I tell you "I love you" it's not because I want to ruin your life or wreck your marriage. It's because I truly love and care for your well-being and that includes all those you love and hold dear.... just to be clear. (yeah, there's a story. Someday I'll tell it.)
Our recent political environment has shown me that people are truly affected by the attack on their choices and how they respond to those around them, which in turn, makes an impact, and not always a positive one. I wondered what kind of impact I could make, being retired from nursing, but it wasn't about being a nurse at all. It was about being present. All you have to do is be present and suddenly, you just earned some hero points. It's so simple. Then there's these crazy people who buy a T-shirt with your name on it, or put a sticker on their car and turn you into a sobbing, grateful mess. Talk about impact. I'm going to make it out of this little Cancer hole I've jumped into and I will never forget a single person who impacted me in this fight, simply by being present. Determined, I will join the rest of you, having an impact, and I hope I have half as much positive impact as everyone has had on me.
However, I ask one thing of all of you. Never underestimate the impact you make on another human being. Your presence there at that moment feeds a HUGE bubble outside of what you think it does and your actions ripple through people like me. Then, and only then, people like me want to earn that presence, that kindness, that five minutes you took to make small talk at the ATM. I am amazed, still, that a kind word or action can turn into saving someone's life or making the end of one a little more peaceful. I am ever more amazed at how little it takes to make an impact on someone who is truly in need. The life you save may well be your own.
Friday, March 3, 2017
Air Bubble!
I am starting to recognize the return of a sense of humor. Be it ever so dark, it is there and I've been able to make myself laugh even when no one else thinks it's funny. A few weeks ago, I was talking with my nurse while she was starting my infusion. I still receive two cancer specific drugs every three weeks that I will probably get for the rest of my life, so a few years or so.... (See? that's sort of funny right? Dark, but funny...ish, not really? I'm a work in progress). Anyway, we were sharing a little nurse humor about sometimes you forget to explain something and the patient starts to freak out because you did a poor job at preparing them for what's to come. You see that concern on their face and then have to back pedal because you forgot to tell them you're going to hook them up to a machine with a bunch of wires that looks like something out of Aliens. Just at that moment, as my nurse hooked me up to my IV, I exclaimed "IS THAT AN AIR BUBBLE?" Sure enough there was a small air bubble in my line. By the way, this is not a big deal. We try very hard to keep our lines clear of air but the truth is, you can take a significant air bubble in a closed system and still be okay. It's frightening for non-medical folks and we do our best to alleviate our patient's fears. However, when you are already freaking out about having your appendix out, a bubble seems like a really big deal. To be clear, pushing air through a syringe, will really mess you up, but a small bubble in 17cc's of IV line is not a biggie.
Anyway, after I exclaim "AIR BUBBLE", my nurse jumps about ten feet and then looks at me and we both start cracking up hysterically. "Bahahaha, air bubble! Good one!" I was laughing so hard, I was crying. The timing couldn't have been more perfect and the two of us were in stitches. There were other patients in the room looking at us like we were crazy. Of course we told the story to every nurse that walked in the room who proceeded to laugh hysterically as well, and we all looked like a bunch of crazies laughing about a potentially life-threatening situation.
That's sort of how my humor is returning. It's dark but it's there and that's a comfort.
Other things are returning as well. I can type without pain or discomfort which is "handy." My appetite has returned although my tastebuds have yet to cooperate, and my digestive system is working a little better. How do I know? Well, no more heartburn and the plumbing seems to be working a little more efficiently. My brain is coming back to life and the fog is lifting ever so slowly. Energy is still an issue and my balance is wonky. Maybe because my leg muscles are so atrophied? (or six months of chemo? Yeah, that's prolly it) Not sure, but I'll take feeling a little better without freaking out about atrophy and balance. It takes time to come back from the dead.
And speaking of coming back from the "mostly dead" (shameless Princess Bride reference), I am starting to be pretty excited about living my life. We won't know for a few months where we are on the continuum. I will get scans in May to make sure all is going well. Remission is presumed, but assumed. I figure I have between now and May to cram in some tropical vacations and a few soccer games. I got big plans to get on snow and maybe hop in my kayak. However, my husband slaps my head and reminds me that I should wait to fun hog until I can get from the bedroom to the kitchen without having to stop and rest. Of course, I would be fighting cancer during the biggest snow year and highest river flows in twenty years...<sigh>
es
My face still feels puffy and I lost my last eyelash so my eyes look small and sunken in. I'm getting my Uncle Fester on. Still bald as a cue ball, and yes, the carpet matches the drapes or should I say the hard wood floors? They should use it as a selling point. Free Brazilian with six months of chemo! Except with all operations shut down to avoid unnecessary and unwelcome infection, it's sort of a cruel joke. But it's all changing. I am looking forward to that full-body, five o'clock shadow and the accompanying itch that always comes when you're standing in line at Target. It's yet another reminder that I am still here, still dreaming of one day seeing my kids make it through high school, my husband on a boat in the South Pacific and my friend, G. Widroe, teaching me to surf the dog on a river board. So many fun things ahead and I'm starting to feel the return of optimism and excitement from the anticipation that there's still time.
Anyway, after I exclaim "AIR BUBBLE", my nurse jumps about ten feet and then looks at me and we both start cracking up hysterically. "Bahahaha, air bubble! Good one!" I was laughing so hard, I was crying. The timing couldn't have been more perfect and the two of us were in stitches. There were other patients in the room looking at us like we were crazy. Of course we told the story to every nurse that walked in the room who proceeded to laugh hysterically as well, and we all looked like a bunch of crazies laughing about a potentially life-threatening situation.
That's sort of how my humor is returning. It's dark but it's there and that's a comfort.
Other things are returning as well. I can type without pain or discomfort which is "handy." My appetite has returned although my tastebuds have yet to cooperate, and my digestive system is working a little better. How do I know? Well, no more heartburn and the plumbing seems to be working a little more efficiently. My brain is coming back to life and the fog is lifting ever so slowly. Energy is still an issue and my balance is wonky. Maybe because my leg muscles are so atrophied? (or six months of chemo? Yeah, that's prolly it) Not sure, but I'll take feeling a little better without freaking out about atrophy and balance. It takes time to come back from the dead.
And speaking of coming back from the "mostly dead" (shameless Princess Bride reference), I am starting to be pretty excited about living my life. We won't know for a few months where we are on the continuum. I will get scans in May to make sure all is going well. Remission is presumed, but assumed. I figure I have between now and May to cram in some tropical vacations and a few soccer games. I got big plans to get on snow and maybe hop in my kayak. However, my husband slaps my head and reminds me that I should wait to fun hog until I can get from the bedroom to the kitchen without having to stop and rest. Of course, I would be fighting cancer during the biggest snow year and highest river flows in twenty years...<sigh>
es
My face still feels puffy and I lost my last eyelash so my eyes look small and sunken in. I'm getting my Uncle Fester on. Still bald as a cue ball, and yes, the carpet matches the drapes or should I say the hard wood floors? They should use it as a selling point. Free Brazilian with six months of chemo! Except with all operations shut down to avoid unnecessary and unwelcome infection, it's sort of a cruel joke. But it's all changing. I am looking forward to that full-body, five o'clock shadow and the accompanying itch that always comes when you're standing in line at Target. It's yet another reminder that I am still here, still dreaming of one day seeing my kids make it through high school, my husband on a boat in the South Pacific and my friend, G. Widroe, teaching me to surf the dog on a river board. So many fun things ahead and I'm starting to feel the return of optimism and excitement from the anticipation that there's still time.
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