Round 3

Tonga was a dream vacation. I am still in disbelief over its beauty, its people, and its culture. What an enormous adventure to witness one of the most beautiful places on the planet free of overcommercialization, anti-tourist attitudes ( due to irresponsible tourists), and environmental degradation. Tonga is perfect. I will always remember it as remote, magical, beautiful and friendly. 

We returned home rested, fulfilled and happy. Our tanks were filled and our sense of humanity restored. I had been struggling with the current global political landscape. After two weeks with Aussies, Kiwis, and Tongans, I was reminded that good people live in this world and they are just as irritated with governments as I am. 

We also returned to Cancer surveillance appointments. This is where this post gets a little depressing. Upon returning from Tonga, I had a brain MRI as part of surveillance to monitor any cancer growth.  It revealed that my cancer had returned significantly in the form of brain metastasis with the added bonus of leptomeningeal involvement. In other words, there are lesions throughout my spine and cerebral spinal fluid. The follow-up scans were a PET CT which showed stable disease throughout my body with no new growth and old growth diminishing, and a Total Spine MRI which confirmed the lesions spreading throughout  my lumbar and cervical spine areas. 

There’s no sugar-coating this. The median survival rate for brain metastasis with leptomeningeal involvement is 2 years. That clock started ticking last August. My doctor has given me a year to live. It's possible this number could go up, but only by months.

It’s surreal. I have minimal symptoms so far. No pain, no dysfunction (other than the usual), minimal impaired memory related to the first brain radiation therapy and the usual fatigue. So far I’m looking a lot worse on paper than I am in person. My options are ever-changing. The second week of May, I was treated with radiation to my spine. I have qualified for a study for liposomal irinotecan, an FDA-approved drug traditionally used  for pancreatic cancer, now being researched for breast cancer metastasis to the brain. It involves 12 weeks of treatment every other week and multiple follow up MRI scans. It’s going to be a busy summer between soccer tournaments, MRI’s, and chemotherapy. 

I’m scared. I’m angry. I’m sad. I’m mostly sad that I don’t get to see my girls graduate High School or Marry. Marek and I won’t have a retirement together, and I will slowly lose my capacity to perform normal daily functions. 

But equally, I lament having to say goodbye to a community of friends that have adopted me as family. In the last couple of years, I made good use of my time. I have made my amends to those I may have wronged, reached out to those I love and let them know how much they mean to me or how they’ve enhanced the extraordinary life I’ve had the privilege of living. The kindness shown to my family and myself has been a true gift. In the last five years, I have been able to reach out to a number of people who have always meant the world to me and only once, did I have a negative experience. I am so fortunate to have friends far and wide that show up in my darkest moments and surround my family with love and kindness. I regret not seeing their children marry, their grandchildren born, or witnessing their dreams coming true. I am confident that the world will continue to spin on its axis as it always has and after a short time, life will go on as usual, but I will be missing it. 

My husband and kids are phenomenal people. I am confident that while there may be a short period of sadness, there will be incredible resilience and growth. Essentially, my job here is done. I find it slightly ironic that I had no intention of being a wife or mother, but at the end of my life, it is the only thing that brings me comfort. I cannot begin to explain the love affair that Marek and I have forged over the last  two and a half decades, and after finally believing that he was really here to stay, we brought two gorgeous, capable girls into this world. I am so proud of Marek and I, two only-children, broke, young and clueless, taking on things like having children, home ownership, careers, life insurance, world travel, and participating in our communities. We were just a couple of broke river guides when we started. In 24 years, we built our own personal Utopia. I feel dying is a betrayal of my commitment to him. I know that he will benefit from a  tribe of friends (and exceptional people) who have assured me they will hold him close. And my girls will rise, both on their own and with a father who is more than capable, plus the wisdom of my sisters. I am grappling with a deep sadness of facing the end of my life. Mostly, I am sad to miss out on my extraordinary family. 

Tonga

I'm a little behind in updating what is going on with our family. On April 11th, I received my maintenance treatment and then jumped on a plane to Tonga! Actually, it was  plane to Los Angeles, then Fiji, THEN Tonga. My mother-in-law knew this was a celebratory vacation of sorts and upgraded my economy ticket to Business Class. It was a total surprise and I was very excited although, the rest of my poor family had to endure 11 hours in economy while I got exotic meals and warm blankets. I felt a little guilty but luckily, I was able to sleep through it.

Tonga was the vacation of vacations. We had a 7 hour layover in Fiji so we rented a car. It's right-hand drive in Fiji so driving is a little challenging. Marek undertook the right hand drive. My left-right designation center is still a little "off." We drove to a beach in a touristy part of Fiji. One thing with right-hand drive is that the turn signal switch and the windshield wiper switch are completely opposite, so every time we wanted to turn, Marek would turn on the windshield wipers to let the car behind us know we were turning. It became extremely entertaining. The weather was tropical hot, without a cloud in the sky, so a rental car driving down the road with it's windshield wipers on was a bit of comedy. Fijians are a wonderful, happy, culture. I'd like to think they were laughing with us.

From Fiji, we went to Tongatapu and stayed at a resort called Ha'atafu where the food was amazing. The guys went fishing and brought back 20 yellow fin tuna which were as big as Zoe. The water was azure blue with a reef right off of the beach. Here, we figured out that Tonga is the playground for Australians and New Zealanders. Apparently, it's only a 3 hour flight. Needless to say, we met some cool folks from down under. We spent Easter Sunday at Ha'atafu and attended a Tongan Church Service. I was blown away by this experience. Tongans sing! They sing from the core of their being. The depth of their singing was so impressive. The men sung in strong baritone and the ladies harmonized in varying octaves. You could feel the music.  No instruments. No organ. The service was held in a one-room church composed of cement block. Nothing fancy except for the decorations of flowers and brightly colored ribbon that adorned the altar. I loved the singing. It was all in Tongan so I didn't understand a word, but the singing.....

Our next stop was the Ha'apai island group where we hooked up with the folks from Matafonua. It is quite possibly the most beautiful place I have stood. The water was so clear and the color varied from aquamarine to azure blue to a turquoise color I don't even know how to describe. We snorkeled, kayaked, swam and shelled on its white sand beaches and the uninhabited island across the channel. Again, we got to hang out with the Aussie and Kiwi guests and laugh about or perspective governments. We were there 8 days and I didn't want to leave. The coral was so bright and alive. The reef fish and leopard sharks were abundant and unphased by our presence. We found beautiful sea treasures that we brought home. Matafonua was a dream. It has ruined me for any future trips anywhere else in the world. I just want to go there and stay.

Finally, not sure if I mentioned this, but Marek has always wanted to sail. (And I've always wanted to call him "Sailor"). For a christmas present, we sent him to sailing school where he got his license to sail, navigate, and charter a sailboat under 50 feet. Then we went to Tonga, chartered a sailboat, and sailed for six days through the Vava'u group of islands in Tonga. I was totally stressed out because the water changed in depth frequently. I was horrified we'd run the boat aground and be stranded somewhere in the South Pacific. I'm realizing now how that wouldn't have been such a bad thing. One morning, we woke up and the motors wouldn't start. Stella says, "'Let's go sailing,' he said. 'It'll be fun' he said." It's the new family joke. Stella and I were the slightly stressed out portion of our crew wondering if Marek could really sail or lay down an anchor. He did, but we chided him anyway. He did a fantastic job keeping us off of shallow reefs and setting anchors in solid places. My husband is a sailor. Hey sailor.....

Our post winter, post chemo, post radiation Tongan adventure was everything I had hoped it would be. Tonga is one of the most beautiful spots on the planet. Untouched, unspoiled, and shared by the people of Tonga who are so friendly and kind. Hopefully, Hilton or Marriott or some big hotel chain never finds it. For now, Darrin and Nina are sharing Matafonua selectively with the rest of the world as they take care of their little slice of paradise, and I am so incredibly grateful to have stumbled on to this place. I'm pretty sure there is nowhere more beautiful and peaceful in the world. If only they had a monthly rate....

Comeback Number 17

The last two weeks have been BIZZY! As my body recovers, I tend to push it further and further everyday, gently. My strength is pretty much gone, and numerous neuromuscular irregularities keep bubbling up. My balance is terrible and my stamina is toast. Depth perception and my body's "place in space" are unusually "off." I am a complete "do-over" with regards to motor ability. After a lifetime of choosing what I thought were good healthy foods, exercising regularly, and setting goals for my healthy self, it's frustrating to find myself back at square one.

I am no stranger to square one. We are good friends. After 8 knee surgeries, 2 femur surgeries, a hip replacement, 2 mastectomies, 2 pregnancies, and 2 rounds of chemo and radiation, I am starting "comeback number 17" from the bottom of the barrel. The experience is something like this: Try scaling a mountain, getting to the top, and then falling back to the bottom....16 times. A well-trained body bounces back quickly, but the neuromuscular stuff takes time. Orthopedic recovery is a whole different animal than having your brain fried. I'm still a little fuzzy and I often wonder if my reaction time will ever return to its pre-chemo state. I can see how others might trade in their gym memberships for a plate of nachos and a remote.  Success seems like a bit of a crapshoot. When you go from a high-level of functioning to a very diminished capacity, it's hard to maintain faith in the process, especially at the age of 50 and after 16 falls from grace. It's easy to give up, and ever so crucial not to.

The struggle, and perhaps my over-developed need to conquer a challenge, is a journey worth taking. This is my Everest. Breast Cancer is my mountain to summit. While friends run marathons on 7 continents, climb 8,000 meter mountains, ski insane places, and kayak close to unrunnable, class V rivers... Breast cancer is my Goliath.

I would rather have Everest. Cancer is not sexy or mainstream. It doesn't require McGuyver-esque ingenuity and does not manifest daily victory.  It's the insidious destruction of cells, one by one, until there is nothing left of your former self that you remotely recognize. In fact, it mostly goes unnoticed unless you're a social media hound such as myself. Breast cancer sucks from the warrior's perspective because you win battles, but the war never ends. There's no "been there, done that, got the T-shirt," sort of feeling. I remember after I did the California Death Ride, (9 hours on a bicycle I will NEVER get back), I was so glad it was over, and I never had to do it again. California Death Ride is 130 miles over 5 mountain passes and 15,000 feet of climbing. It was a great training exercise for Breast Cancer, (because it seems endless), and I am glad to put it on a resume and call it done. I wish I could do that with Breast Cancer, but Breast Cancer will keep coming at me. At stage IV, it's a beast and I am at the mercy of research, development and motivated medical people to extend my life and possibly find a "cure."

I am also at the mercy of insurance companies who try to deny me care based on "cost." It costs what it does, thanks to the companies charging exorbitant prices for medicine and care, not because the insured get sick.  In fact, I'm pretty sure people pay for insurance in hopes the insurers will do the job of negotiating prices down rather than denying paying clients care when they most need it, and are least able to be their own advocate. My husband struggles to keep his job because he must take on more responsibility at home and some companies don't like employees who are not totally committed to the bottom line over their families. These are just a few of the additional, bonus hurdles that go with a terminal illness, and it goes without reference to the current political climate.

As I look over my life, I realize how easy my generation has had it. No Great Depression, no World War, no great threat to our way of life because good men and women in the military do what they do. My children are healthy, my husband is abnormally awesome, and we live an extraordinary life. I try not to be ungrateful because even with the Cancer part, there are astounding moments that I still get to cherish. Breast Cancer whittles you away slowly. There isn't this sudden, consuming despair that rips out your heart and stomps on your soul. If you are stubborn enough, and a glutton for punishment, such as myself, you can endure, but you do it from a sideline. As your capabilities diminish, you become a spectator of your own life. If I were ten or fifteen years older, maybe that would be easier with respect to a typical human's average rate of decline.  Right now, I just want to play with my kids, camp in the wilderness, and travel the world with my family. It's grandiose and perhaps a bit selfish to whine about my disability, or hope that somebody will one day cure cancer so that I may go helicopter skiing in the Chugach range of Alaska or sail around the world. However, it is this driving desire to experience such things that keeps me fighting to reclaim a version of my pre-cancerous self.

I started Physical Therapy this week. It is a painful exercise in humility. My once nimble, athletic self has all kinds of deficiencies. Balance is gone. Strength is toast. Flexibility is not only bad, but worse on the left, (my "good" side). Vision is affected by scar tissue left over from a tumor on my retina, and the lack of mitochondrial recovery means I work hard one day and sleep the next two, but it's getting better. And so is my outlook. I believe I can improve to some level of a functioning human that no longer relies on the kindness of friends to subsist, but rather is the friend that rallies to go for a bike ride. I'm learning how to move again, and how to revise half a century's old training regimen that no longer works for me. The goal is based on finding the  minimum dose for maximum results, and I must set new standards for myself based on a new "normal." I am learning and adapting and it's fascinating to witness the subtle changes already occurring, but how does one maximize the steps forward before having to take one back? It's a tricky balance between metabolism and overload.

This week's good news is not only that I have a better than decent PT who is helping me move more efficiently, but my cancer markers are down! Yep, my CA 15-3, which was the indicator that my cancer had returned last summer, is trending down. Prior remission values were in the neighborhood of 15-19. When I got sick, it peaked at 402. It is now 52 which is half of what it was two months ago. This has given me a great boost of optimism toward actively pursuing my recovery, and giving me every reason to make the most of my time.

I am not complacent by any means. There's more of an expediency now to make the most of every good moment and fill my days with being productive toward achieving my goals. It's hard to speculate what life looks like from here, and I have to have faith that treatment will afford me an opportunity to achieve my best self, which is why I'm motivated to achieve a greater level of independence sooner, before my next round. Be that as it may, time is not on my side. While I hope for extended remission, it's not guaranteed, so I am constantly looking over my shoulder for the beast to return. I am training to beat Goliath every day. I still get infusion every three weeks that hopefully keeps Goliath in the shadows all the while living each day as if it were my last.  Because it is. Today is the best I will ever be.

Return of an Old Friend

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.

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. 

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>
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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.

Broken but not finished.

This week, I received the last treatment of 6 months of chemotherapy. 18 treatments total. Even my oncology nurses said 18 seemed like "a lot."  I knew from my first bout that chemotherapy takes you to the brink of yourself. The side effects accumulate and get worse over time. As each week passed, I felt myself slipping into a fog and haze.  Neuropathy set in and made it challenging to type. Exhaustion contributed to low productivity, and I have found myself sleeping for days at a time. I was always a good sleeper and I am thankful for this as I have now slept through lots of rough days, days that run into each other and nights that never end.  As my fingernails and skin sloughed off, the bloody noses worsened, and my digestive issues increased, I began to panic that I would not see the last infusion or a version of my former self. I am physically destroyed. Up to my last two treatments, I didn't think I could do one more, or that it could get any worse. About a month ago, I stopped recovering between treatments. I would get a little better by the end of the week,  but not much and having to return to more poison, unrecovered, was starting to wear on my psychological wherewithal. Luckily, I miscalculated how many treatments were ahead and my last one came 3 weeks early, last Monday. It gave me renewed resolve to get over that hurdle, but being physically wrecked, the final treatment seemed to be the heaviest burden. ALL of my side effects were exacerbated. I didn't eat for three days, slept through most of them hoping that this too shall pass. When Saturday rolled up, I was worse. Worse didn't make sense and I thought to myself, "Oh no, this is it. This is my best self." My hands were numb, my appetite non-existent, I won't even bother with the plumbing mechanics and my skin is just awful. I soaked in the bath, force-fed broth and protein and limped through Sunday.

It's Monday and I am feeling better.  I got in the bath. Soaking in water seems to "lighten the load," where all of my side effects don't seem so acute. As I was sitting there, thinking of what it was going to take to get through this, i realized I was hungry. The numbness in my arms and hands had subsided and I had a little more energy than usual.

I was getting better.

Then, I started to cry and I must have sobbed for 20 minutes, alone in the bathtub. I don't cry much. Crying doesn't get the job done for me and it's too painful to witness for those who work so hard to keep a positive attitude. Seeing the problem, finding the solution, however temporary, has been my focus for the last 6 months. Every time I got better, I geared up for my next treatment, told myself, "Stay focused" only 6 more to go, 5  more to go, 1 more to go....Today, there are no more "to go," and the reality of that hit me like a ton of bricks.  I am alive where just months ago, I thought I would be dead by today. Today, I start a new chapter of recovery. There's no more cellular destruction which allows my very atrophied, worn out, destroyed body to fix itself. Bring on the wheatgrass.

Actually, I celebrated my emotional breakdown with a bowl of cereal. Don't judge me anti-carbo peeps. I have eaten an enchilada, a handful of brussel sprouts and a bowl of cereal since Monday which I count as a victory. I know that now is the time to re-evaluate my diet choices once again in a ginormous effort to recover from 6 months of digestive torture, but with malabsorption syndrome (due to the chemo), my pipes are a little off kilter. I don't absorb half of what I eat so vegetables don't have a lot of appeal. Imagine eating nothing but corn and bell peppers for a month.  How do you think spinach salad is going to look? Yeah, it's kinda like that only with a laxative. While I see lots of good proteins and healthy fats in my future and possibly a ketogenic diet, for now, It's about fuel for recovery. Ruffage is out.

Suddenly, I'm planning even more. Planning my new morning walks, ketogenic meals, vacations, new tattoos (what?!?)  facials, massages, acupuncture....  I'm getting better, which means all of these interventions now have meaning and substance. I no longer have to destroy, weekly, what small gains I make. Now, I can build and create and move forward. Scans will come soon enough and we will have more news of the future, but it will still be vague. What matters is today. My disease is now invisible and perhaps hiding, but the best we can do is watch and wait.....

And make some  plans.

Adaptation

One of the great things we humans are good at is adaptation. We adapt to different environments, to stressful situations, to life-changing circumstances. How we adapt contributes to our survival. I am a firm believer that two important things contribute to the success of adaptation, the power of positive thinking, and active problem-solving.
Everyday, is a new experience. The side effects of treatment are numerous and come and go with great irregularity. From daily bloody noses to joint pain to peripheral neuropathy, you never know how your day is going to go. The fatigue factor is debilitating and I can count on that one just about every day. I have about two hours of battery-life each day, which when I try to push to three makes my family rebel with impunity. My kids are no exception.

"Mom, you're reaching your two-hour window. Maybe you should get some rest."

This is great advice but when your 12-year old is saying it, the credibility is circumspect given that she has a 48-hour battery life with auxiliary power, and I think she's just tired of listening to me tell her to clean her room. I like to follow the "use-it-or-lose-it" principle, meaning I like to push that energy limit so two hours doesn't go to 1 hour. I can "rest" with the best of them but every day, confined to quarters, gets a bit old. As I get closer to the end of my treatment (only six more!), the recover time is longer. For example, Thursdays and Fridays were my down days, but now, I'm down through Monday, just in time to go to treatment on Tuesday. Let me just say that the psychological effect of this is a bit brutal. Each week, my body deteriorates a little more and that weakness makes it tough to psychologically pick yourself out of bed at 7am to go to re-poison yourself.

This is where the power of positive thinking plays a role. It's not forever (yet) and there's an end date coming up. There will be celebrating and revelry (but probably for only 2 hours) and my energy will return to some level that remains a mystery given the slaughtering of my mitochondrial fortitude. They come back with time, but time is the key factor. You don't just stop chemo and turn back into your 40-something self. Most of you know me not to be a patient person. so problem-solving will gear towards recovery nutrition, exercise and dogged determination alongside frustration over slow progress. Generally, it takes a year to get immunity back to working order and 2 years to see marked improvement in strength and agility. Not to be a doomsday girl, but I know my days are a little numbered so I worry about the level of recovery with respect I have time left on this Earth. I'd like those remaining years to be somewhat pleasant.

For now, problem-solving is in full swing in trying to keep my mind busy with things that I enjoy. I'm not much of a reader which is ironic for a blog writer. I like to make video presentations so I work on those with all the soccer photos that I've taken for the last 8 years and the  fun pictures being sent to me in #liveliketori T-shirts. By the way, I love these pics. You people are nutty and I just love that. From mountains to archeological sites in faraway places to groups of friends at parties, I can't tell you what a boost that is. I have also organized chemo days to include lunch at my favorite Vietnamese restaurant. Across from the hospital is this great little place called "My Father's Kitchen", super small, super friendly and amazingly good. The pho (pronounced FUH) is the best chicken noodle soup ever. It's a staple at this point and keeps me eating protein and getting enough liquid to keep my nose hairs from sticking together. They also have green papaya salad I take home for dinner and the whole plan and experience of this gives me something to look forward to on Tuesdays other than getting poisoned with red bull and vodka and cytotoxic chemicals that induce the side-effect-of-the-week.

I've advanced to "GI issues" as well, meaning it's tough to eat at all with taste buds that are all jacked up and a gut that rejects anything I put into it. Don't worry, I'm still not throwing up and the nausea seems to have diminished (woo hoo!). I'm pretty sure my body has given up on ejecting my stomach contents via the top end, so now, it's trying for the back end. Running right through me is an understatement and I haven't experience this level of expulsion since my first trip to Mexico. Montezuma would be well satisfied in his revenge. If I had to choose between the two, I'd say that I'd rather go with this. Backing up is far worse and causes problems that require hospital intervention. My goals are to avoid hospitals. Bad things happen to people with no immunity in hospitals and I prefer not to entertain that possibility.

Doctors have an answer for everything, recommending a number of pharmaceuticals that certainly work and I will take them when things get a little dicier, but my theory is that body adapts to everything you put it through. My concern is that it will depend on some of these pharmaceuticals that I will be stuck with for "life" (whatever that means) and reduce my chances to getting back to my 40-something self (despite now being 50). Not willing to do that. So I adapt to the current situation. More fluids. More soup. More small meals to try and keep nutrition  needs met and stable. It's kind of a full-time job.

I imagine this is a lot what the 70's an 80's look like in the human lifespan. Basic bodily needs become the daily goal and there's less time and energy for stand-up paddle-boarding, kayaking or skiing. If any of those things are on your list, don't wait to enjoy them. At some point, they may go away.

I am doing well all things considered. I'm maintaining and the end of chemo is now on the horizon. We are making plans for spring and summer and I am hugely optimistic that my deficits will be few and far between. Scans to come sometime in March or April, just in time for soccer. Until then, we are getting pounded with rain and river levels are at flood stage. Fortunately, nobody is losing their homes and everyone appears to be safe so it makes the enjoyment  of watching flood stage rivers exciting and fun. For boaters and river people, watching water and the power of nature is a cool thing and beats the hell out of the non-stop flow of Netflix we've been experiencing lately. Driving around seeing bridges about to be swallowed up by river flows is pretty fun and I try not to lament the lack of energy that keeps me from jumping in my kayak. It all speaks to that problem-solving thing since the river is about 45 degrees and after jumping in my pool on New Year's Day, I can honestly say that being upside-down in freezing, fast-moving water is a level I am not trained up for.

I am excited for spring. I am excited to get to see some of my Park City friends. I am excited to get back in a kayak even if it's a class II drift to a peaceful river spot. And I can say that these thoughts and plans and anticipations are what drive me through some of the uniquely interesting days of chemo side effects. Problem-solving, positive thinking, adaptation, or I think the marines say, "Adapt, Improvise, Overcome." Hoorah and Semper-fi.