About 8 years ago, our small community of outdoor enthusiasts was informed that one of our own was diagnosed with a type of blood cancer called "Multiple Myeloma." It is a cancer that involves plasma cells. Wikipedia explains the basics here. At the time, he was a young (40's), cycling, kayaking, father of two. He had completed California's Death Ride (130 miles, 15,000ft of climbing on a bike) and he was our local "go-to"for all things road biking. He grew up sailing and somehow found his way to the river where he became a river guide, kayak maggot and professional dirtbag. That is, until he and his wife of boundless energy had kids, and he had to shed his dirtbag persona in exchange for a regular paycheck. He became our mortgage broker, but first, he was our partner in crime. Our kids are roughly the same age and his invention of "Coloma Coolers" got us through the sleepless nights and potty training craziness.
Our community rallied around him. 300 people signed up to help his family with meals, rides to chemo or radiation, helping with the kids, intermittent fundraising, or just going over to keep him company. His journey went up and down with two bone marrow transplants and multiple treatment regimens. His family has endured a special brand of hell over the years that no one can readily understand nor all the community support in the world can diminish.
2 years after he was diagnosed, another one of our friends was diagnosed with brain cancer. Glioblastoma. Just when we thought we were winning the fight, the wind was taken completely out of our sails. She was rushed to surgery where they removed almost all of the tumor and we were all optimistic that she just might have dodged a bullet. Our community cocooned her too with meals, and rides, and playdates for her two kids and support for her family. Between the needs of these two special families and a loving, caring and giving community, we all came to appreciate the fragility of our lives and how important each day is. Steph's cancer came back a year later and it was diffuse. There were no more treatment options and she was admitted to hospice care.
We were all reeling from such sad events. Our community was on high alert and everyone was taking stock of their choices, their careers, and their options. Our plates were full with helping our friends and making the most of every moment with our families. Just as Steph's condition worsened, I found a lump in my armpit. It turned out to be Stage III Breast Cancer. I was afraid, sad, worried.... all the things that go with diagnosis but I was also embarrassed. I felt so badly for my community, and how this news would be just one more black cloud in a recent downpour. I didn't want to be the bad news. I didn't want to contribute to the community's pain nor the burdens of my sick friends.
I told five people and swore them to secrecy.
Two months later, my friend Steph passed away. I was already bald and in the throes of chemotherapy, and her passing was one of the saddest days I have yet to report. Our other friend was holding strong after his first bone marrow transplant and enjoying time with his family and once again, our community was rallying around another family in crisis... mine. The kindness was endless and I remain grateful for the gifts of the weary that rallied to my cause having rallied and lost, and still feeling the sting of that very intense sadness.
Thankfully, I have pulled out of my illness successfully. This year, I will celebrate five years of remission. However, I am always looking over my shoulder and I am conscious of every move I make, not just for my sake, but for the sake of my kids, my husband and an entire community of people who never turn their backs on adversity.
This week, my friend with multiple myeloma announced he was admitting himself to hospice. The chemo treatments have stopped working, his immune system is no longer fighting and his body is saying enough is enough. This, just a mere week after attending a music festival with his family.
How quickly life changes.
I am devastated by his news. My heart is heavy as I can speculate better than most what his wife and kids are going through. Our community has enjoyed his presence and his contributions for the last 8 years, and we were all starting to get comfortable with the idea that everything was going to be okay, that maybe we could stop being on high alert, stop worrying about life-deafening choices, and stop wondering if this would be the last time we saw so-and-so. I became comfortable with his "new normal," grateful for a reprieve for his family, and happy that even though he had lost his athletic persona, he was still the same guy on the inside with a big heart and a great sense of humor. Admittedly, I let my guard down. Just for a second.....
My journey is just a parallel to the tragedy unfolding at my friend's house right now. I have no voice to scream about how unfair it is, how much my heart hurts and how unbelievably scared I am because none of my drama compares to what's going on just half a mile from my house. Knowing my own issues, I asked my youngest daughter how she was doing with the news and through gentle tears rolling down her face, she whispered softly, "I'm afraid you're next."
I couldn't lie to her. I am afraid too. My cancer is in remission but recently, I've been very sick and my symptoms still linger. It's not cancer but it elevates our fear, combined with losing a friend, watching a family endure an awful time, and wondering if this is the beginning of my end. I worry for my community of friends. This is a devastating blow, unexpected, and undeserved.
If my friend truly moves on to the next dimension, I will be the last man standing of our group of 3. I am unmercifully humbled by this, and their fates are raw and in my face that I'm not getting out of this life alive. I can only hope that we can recover and have some joy in the times in between. I pray that that time is long enough to soften the burden of loss and intensify the memories of two amazing friends at their very best, on the river, and with their families.
I am not worthy of the extra time, unlike my friends, but I am grateful. I will do my best to earn the gift of a few more minutes with my amazing tribe of river people and hopefully, remain positive about all of the gifts coming my way rather than allowing myself to be consumed with "being next." So if you see me, don't let me take one second for granted. I'm counting on you.
Tuesday, April 12, 2016
Monday, April 4, 2016
SOB
If there is anything we take for granted, it is the satisfaction of a deep, cleansing breath. Take one now. Fill your chest with clean, crisp air, and as it exits, let it leave you completely, and feel relaxation overcome you. Forget everything but this one cleansing breath and let it wash over you, just for a moment.
Now imagine if this breath was stifled, or hindered. Imagine what it feels like to try to breathe in a room of smoke or through something over your face like a scarf, or a pillow. It produces a feeling of urgency, an urgency to get out of the smoke, or to remove the suffocating stimulus from your face. Anyone who suffers from lung disease or breathing issues probably knows what this urgency feels like. They experience incredible and unforgivable fatigue. Breathing is the only activity the body saves energy for, and all systems are shut down in order to secure just one deep, satisfying breath.
I've been sick for six weeks now. The pain is gone but the cough and the shortness of breath (SOB) remains. It's not infectious. It's not cancerous, and it's completely anomalous.
I try not to think about it. However, interestingly enough, the average human respires roughly 10 to 12 times per minute, reminding me every 5-6 seconds that I have a breathing issue. If I try to breathe to the depths of my lung fields, I am burdened with a nasty, unproductive, hack that makes me sound like I've been smoking for 40 of my 49 years. It reminds me of an anti-smoking commercial where the big, bad wolf huffs and puffs to blow down the little pig's house but everytime, he takes a deep breath, he exhales a deep, hacking cough with nary enough power to blow out a candle, let alone topple a house. I have never smoked, so it seems a little unfair. Maybe I should have and I wouldn't be in this mess, but something tells me that smoking may have made this problem worse. I'm sort of considering taking up smoking at this point. If humid, tropical, Tahitian air is not making any headway toward getting better, maybe I'd make better headway with some toxic vapor. Maybe I need to toughen up those delicate, healthy tissues. Unfortunately, I'm all talk, no action. Everything has a side effect or a price, and with everything I have going towards breathing, I can't afford the cost of an irreversible setback. I'm sticking with evidence-based medicine: healthy diet, lots of fresh water, decreased exertion, increased rest and crisp, clean air.
Why is this significant? Well, if I didn't have a cancer history, I'd pass this off as some unfortunate bug I've caught and can't seem to shake. However, being a cancer survivor means anything that attacks you for more than a week, raises your hackles. Why is my immune system not handling this? Why can't my doc diagnose it? Why are the meds not working? It's tough not to panic especially when you tell the story to friends and family and that palpable look of fear on their face and the shake in their voice tells you that maybe you should be more concerned. I don't have the breath for panic. I barely have the breath to get up a flight of stairs right now, and I don't have that deep, cleansing breath as a mechanism to bring me peace and a level head. I wish I could focus on anything else, but the shortness of breath is extremely distracting and I have to consciously force myself to breathe deep just to know I still can. This deep breath is accompanied by a short bout of hacking and coughing followed by a recovery period.
I don't think this is a permanent thing but one never knows. My cardio capacity has been affected ever since chemo. I wonder if the chemo has set forth a pleural degradation over time and five years into this mess, the effects are beginning to be felt. To be honest, up to now, my capabilities have been incredible. I have been charging in the gym, on the soccer field, skiing in the mountains, rowing down rivers, surfing waves of the Pacific, chasing my daughters and pushing my limits as always with very little notice of defect or disability. When I think of the physical assaults I've undergone (broken femur/pelvis, hip replacement, stage III breast cancer), I feel a little guilty that my limitations aren't worse. The potential for disability is far higher than the actual status quo. I guess that's why I try not to complain about this lung thing because really, I'm ahead of the game on all counts. However, after six weeks, I'm starting to dwindle. I also downplay my condition in the company of my husband and kids. They worry so easily and they've already been through so much. Everybody is scared and teetering on the possibility of tragedy. It's the reality of survivorship and everyone I care about looks to me for clues of how to react. Because of this, I don't react at all. I just take a deep breath and......
Now imagine if this breath was stifled, or hindered. Imagine what it feels like to try to breathe in a room of smoke or through something over your face like a scarf, or a pillow. It produces a feeling of urgency, an urgency to get out of the smoke, or to remove the suffocating stimulus from your face. Anyone who suffers from lung disease or breathing issues probably knows what this urgency feels like. They experience incredible and unforgivable fatigue. Breathing is the only activity the body saves energy for, and all systems are shut down in order to secure just one deep, satisfying breath.
I've been sick for six weeks now. The pain is gone but the cough and the shortness of breath (SOB) remains. It's not infectious. It's not cancerous, and it's completely anomalous.
I try not to think about it. However, interestingly enough, the average human respires roughly 10 to 12 times per minute, reminding me every 5-6 seconds that I have a breathing issue. If I try to breathe to the depths of my lung fields, I am burdened with a nasty, unproductive, hack that makes me sound like I've been smoking for 40 of my 49 years. It reminds me of an anti-smoking commercial where the big, bad wolf huffs and puffs to blow down the little pig's house but everytime, he takes a deep breath, he exhales a deep, hacking cough with nary enough power to blow out a candle, let alone topple a house. I have never smoked, so it seems a little unfair. Maybe I should have and I wouldn't be in this mess, but something tells me that smoking may have made this problem worse. I'm sort of considering taking up smoking at this point. If humid, tropical, Tahitian air is not making any headway toward getting better, maybe I'd make better headway with some toxic vapor. Maybe I need to toughen up those delicate, healthy tissues. Unfortunately, I'm all talk, no action. Everything has a side effect or a price, and with everything I have going towards breathing, I can't afford the cost of an irreversible setback. I'm sticking with evidence-based medicine: healthy diet, lots of fresh water, decreased exertion, increased rest and crisp, clean air.
Why is this significant? Well, if I didn't have a cancer history, I'd pass this off as some unfortunate bug I've caught and can't seem to shake. However, being a cancer survivor means anything that attacks you for more than a week, raises your hackles. Why is my immune system not handling this? Why can't my doc diagnose it? Why are the meds not working? It's tough not to panic especially when you tell the story to friends and family and that palpable look of fear on their face and the shake in their voice tells you that maybe you should be more concerned. I don't have the breath for panic. I barely have the breath to get up a flight of stairs right now, and I don't have that deep, cleansing breath as a mechanism to bring me peace and a level head. I wish I could focus on anything else, but the shortness of breath is extremely distracting and I have to consciously force myself to breathe deep just to know I still can. This deep breath is accompanied by a short bout of hacking and coughing followed by a recovery period.
I don't think this is a permanent thing but one never knows. My cardio capacity has been affected ever since chemo. I wonder if the chemo has set forth a pleural degradation over time and five years into this mess, the effects are beginning to be felt. To be honest, up to now, my capabilities have been incredible. I have been charging in the gym, on the soccer field, skiing in the mountains, rowing down rivers, surfing waves of the Pacific, chasing my daughters and pushing my limits as always with very little notice of defect or disability. When I think of the physical assaults I've undergone (broken femur/pelvis, hip replacement, stage III breast cancer), I feel a little guilty that my limitations aren't worse. The potential for disability is far higher than the actual status quo. I guess that's why I try not to complain about this lung thing because really, I'm ahead of the game on all counts. However, after six weeks, I'm starting to dwindle. I also downplay my condition in the company of my husband and kids. They worry so easily and they've already been through so much. Everybody is scared and teetering on the possibility of tragedy. It's the reality of survivorship and everyone I care about looks to me for clues of how to react. Because of this, I don't react at all. I just take a deep breath and......
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