I mentioned earlier that I am in a weird place. Secretly, I am jumping for joy that I am still a card carrying member of Earth and that for the second time in my life, have managed to escape an untimely death. On the 20th of this month, I will receive my last Herceptin infusion. Herceptin is a drug that prevents the overexpression of a gene that causes my cancer. Lately, I've been thinking that this last year has been a freebie. The Herceptin keeps the cancer at bay while I change my lifestyle and rebuild my immunity. However, I have not been totally successful. I am starting to get a little worried that we are taking the Herceptin away. I have a perception (potentially misconceived) that I have run out of fun tickets and it's time to pay the piper, meaning it's time to put my money where my mouth is, or more specifically my kale.
I've tried to incorporate more vegetables in my diet. Largely, I have been successful but as a mother of two active children, I admit the occasion chocolate chip cookie sneaks in. I can tell right away. My body feels like crap. I hoark down some cucumbers and kombucha to offset the effects of a pure sugar/flour rush, but it's too late. The only good news is that the chemotherapy last year affected my short-term memory, making forgetting that I ate the cookie hours later a little easier to do. Other than that, I pay.
I have given up alcohol while I remain in treatment. Don't worry. Alcohol does not cause cancer. My reason for giving it up is to give my immune system every fighting chance at killing off a mutating cell that might be a precursor to cancer. My natural killer cells are securing a post a.k.a. my body and a bunch of drunk immunity cells don't do the job as well. They just float around and giggle. I need those babies ready for battle at all times. Hence, no martinis during wartime.
I gave up caffeine. Actually, I traded in my caffeinated beverages for decaffeinated ones. Decaf in the morning. I'm just getting used to that. Apparently, caffeine isn't worrisome but dehydration can be. Add a little sugar to that mix and you've got a prime breeding ground for bacteria. Now my natural killer cells and the rest of my immunity is forced to put down minor uprisings versus standing at the ready for the real war. The war on cancer.
I admit that exercise seems daunting right now. I know it's important, and I'm doing my best, but not being 100% means fighting the uphill battle. This is my biggest disappointment because I truly love being active. I haven't hit that "eye-of-the-tiger" moment where it's time to drop everything and start digging into getting in shape. Seems like there's always something drawing me away from my exercise program (my kids, my husband's travel schedule, my limited musical choices in today's world.....Seriously.)
Finally, I have failed miserably at giving up sugar. Have you tried the Talenti Sea Salted Caramel ice cream? It's like crack. Addicting and orgasmic. Lately, a really good chocolate chip cookie also seems to test my resolve. Again, I counteract with a kale smoothie but it doesn't undo the effects of a pure sugar trip. This will be my Achille's heel for eternity. I am starting to get how it feels to be a blank (insert vice of choice)-aholic. My drug is sugar and I am a sugarholic.
And thus goes the challenges of survivorship. Frought with lifestyle changes and personal realizations, I am evaluating every little thing I do and enjoying every single moment. I worry about my ability to make the changes I need to make to keep my immunity doing its job and preventing any of my cells from mutating into cells they are not supposed to be, but I am also tasked with enjoying every possible moment filled with gratitude and the joy of life. It is a strange paradox and feels a lot like walking a tightrope. Perhaps it would be easier if I felt a little healthier. I am sure the menopause and the Herceptin are having an impact. Looking forward to see what impact that is when they cut me off.
Monday, November 19, 2012
Monday, November 12, 2012
Tributes and Trialations
In Loving Memory of Donald Takayama 1943-2012
Ever go to a party and play that game "what would you do if....?" We used to play it all the time. What would you do if you had to choose between a life of suffering or a quick death? What would you do if you had to choose between your children? Door number 1 or Door number 2? What would you do if you were told you had Cancer? That you had six months to live? Everybody has an interesting answer. It's a fun game because it's hypothetical. There are no consequences. At the end, you get to go get another beer and thank your lucky stars that your particular scenario would NEVER happen and then you dig in to the seven-layer dip. Until you hit forty. Then all of those frightening scenarios start unfolding for you or your friends long after you've forgotten the brilliant answers. My friend had to choose whether or not to extend her father's dwindling life in a moment. No warm-up. Nobody went before her. All of a sudden a doctor presented her with options and that she needed to decide fairly quickly. Of course, she and her family made the right choice.
This week, I attended his service. It was a beautiful tribute to a man who gave so much that it left him with very little, financially. However, what he gave, he received back in community and spirit. Admittedly, I had resented him at times for not being there more for his daughters. He adored them but his involvement was sporadic. He was an adorable man and he loved me as much as he loved everyone. He was pure of heart and soul, but secretly, I wanted him to give an exclusive to my best friend. I had my own daddy issues so I knew the challenges of growing up without a father. Here was this highly successful man, devoted to his craft, and widely known for his kindness but refused to give his own daughters the exclusive. I learned at his memorial that it wasn't that he didn't give his daughters the exclusive. He gave EVERYONE the exclusive. He was genuine to all of his friends and family and he spread himself out so thin, that ultimately, he was always surrounded by family.
There were a number of speakers at his memorial and it was so very moving to see why he had been involved with his children only intermittently. He had communities of young kids that he taught to surf, that he sponsored and supported, and that went on to be World Champions and propel the sport of surfing into the next millenium. He gave his heart, his time, his money, his life to sharing his passion with others. In return, all of those people surrounded him with love and came together to speak on his behalf. Surfing legends came from miles around to pay tribute to him. Members of his community gave up a Saturday to spend time saying goodbye. During the ceremony, even a hummingbird hovered in front of the podium and drank nectar from a Bird of Paradise as if it were his spirit, eavesdropping on his own funeral. There must have been a couple of hundred people who paddled out in freezing cold temperatures and choppy waves to form a circle in which they all threw flowers and cheered his name. I was moved by the number of people he had touched and comforted, and by the fact that my best friend and her sister would always be surrounded by the community of love that he created. That is their inheritance and one to be cherished. It is a unique and special legacy that he leaves behind, unlike the "regular" dads who put in their time on a daily basis.
RIP DT. Thank you for giving me my very best friend, for being the very best dad you could be, and for teaching me that living your life and loving your children can be done in very different ways.
Sunday, November 11, 2012
6 (or 7 or 8) Months in a Nutshell
I know. I fell off the grid. My last post "Fear" was a trip down a dark pathway. Everytime I sat down to write, I ended up with some dark and heavy passage on life and cancer or the deep corners of hell. I decided I didn't want to read my own posts. Too depressing. I wanted to be funny and entertaining. I wanted to turn a tragic circumstance into a gut buster. Then, I tried forcing humor into my ramblings. Unfortunately, it brought "gallows humor" to a whole new level, kinda like dead baby jokes. There's just not much comedy in gastrointestinal distress or radiation burnt skin. Well, there was to ME, but I figured unless you've had the joy of transforming yourself into a french fry or have been astounded by the different colors of excrement, it was hard to relate. I decided to write a book. That way, I could provide context to my cancer ramblings and maybe then I would be funny. A close friend of mine recommended his brother's book, "Now it's Funny" By Michael Solomon.
Darn it.
My book had already been written by someone else. Michael Solomon writes his account of his battle with Lung Cancer and writes with satire and sarcasm very much like my own. I am hard pressed to improve on the experience and the title is a basic "sum up."If you would like to read my book, read his. It's awesome. I'll just take credit that I would have written the exact same thing if I'd only gotten cancer sooner.
So what have I been up to for the last six or seven months? Well, for starters, I spent 5 weeks "tanning" in San Francisco. It's exactly the same thing. You take your clothes off, get into a big machine for 5-7 minutes a day and then you are done. I spent the first few weeks, riding my bike to treatment, working out at the gym and generally feeling good. Throw in a few days of retail therapy including $100 worth of new underwear, and some killer Mission fish tacos, and my time spent in radiation did not suck. The last few weeks got tougher once my skin started to burn and burn it did. It turned dark purple and got really sore. It looked bad and didn't stop burning until a week after my last treatment which was when I lost all of my skin. Yeah, not much funny about that.
Directly after my tanning sessions in San Francisco, we took a vacation to Bali, Indonesia. Our family had been through the ringer. I had been staying in San Francisco the entire time and needed to reconnect with my husband and kids with what was left of my body and my brain. Things have been getting funnier ever since. First, there was the broken rib. Radiation weakens the bones so while I was out surfing, being bald and doing my Kelly Slater impressions (NOT), I broke one of my ribs. Oops. Really? So, I spent my tropical sunset evenings icing my chest while my skin sloughed off. You'd think that would be enough because we all know God NEVER gives us more than we can handle right? I can just see God sitting up there chuckling to Himself, "Watch this." A few days later, I was bitten by a Rhesus Monkey. A Monkey! Does that ever happen to anyone? Really? Tack on a Rabies Vax Series to a broken rib, second degree burns after five months of chemo and breast removal and I'm starting to think that maybe God has a sick sense of humor. I've had enough. "No, I'm pretty sure you can handle more...," says God. I will say that we stayed at the Hilton, got lots of free drinks and surfed everyday despite the monkey bites and broken ribs, so it kinda evened out.
What does any self-respecting, post-chemo, post-surgery, post-radiation, post-rib fracture, post monkey bite, mother of two, being thrown into chemically-induced menopause do when the going gets tough? Takes the kids to Disneyland of course!!! My husband treated me and our two, adrenaline, cracked-out kids to two days in the Magical Kingdom. Certain I would hurl, my adoring family dragged me onto California Screamin' six times but I showed them, (and God,) that I could handle it. I did not hurl. I even ate greasy food and sugar to boost my odds. BUT Nooooo! heh heh heh. I still got it. The girls were ecstatic and the joy of being there with them is indescribable. It was the reason for all the other crap I'd been through, and evidence I'd do it again if I had to.
School started in August. The hamster wheel of motherhood needed spinning and I jumped right on while my husband returned to work and the everyday grind that goes with being a father of two daughters, a husband, and King of his castle. The girls dove right in to school, soccer, martial arts, field trips, book reports and a World's Fair project. And all the magnificent people that came out of the woodwork to help my family survive a breast cancer diagnosis, disappeared into the woodwork from whence they came. I took over making dinner and suddenly, it's November. I find myself in a strange place, wondering, did that just happen? I'm well enough to re-engage into my life, taking care of my kids, doing the grocery shopping and checking the mail. I am very thankful for my faculties, but I am not done. I am still in the shadow of this monumental event. I have not reached my post-cancer potential. My recovery is not complete. Primarily, because I am still in treatment. However, life goes on pretty normally and I am happy everyday that I am able to navigate the simplest of schedules, celebrating the small victories and biding my time until my body is ready to respond to the brain that is ready to drive it. Until then, I am in a weird place. Most days, it's funny because life is generally pretty funny and lately, I plug into and out of the funny parts. My Herceptin infusion every three weeks and my new "cell phone pocket" in the left portion of my bra reinforces that yes, it really did happen and even after 14 months, it is still not over. As I transition into survivorship, I am so very grateful that I am here, grateful for Bali vacations and rollercoasters, grateful for broken ribs and monkey bites and that the lives of my husband and my kids have returned to a version of normalcy. I am trying to have patience and each day, I get a little better than I was the day before.....but I'm not there yet.
Darn it.
My book had already been written by someone else. Michael Solomon writes his account of his battle with Lung Cancer and writes with satire and sarcasm very much like my own. I am hard pressed to improve on the experience and the title is a basic "sum up."If you would like to read my book, read his. It's awesome. I'll just take credit that I would have written the exact same thing if I'd only gotten cancer sooner.
So what have I been up to for the last six or seven months? Well, for starters, I spent 5 weeks "tanning" in San Francisco. It's exactly the same thing. You take your clothes off, get into a big machine for 5-7 minutes a day and then you are done. I spent the first few weeks, riding my bike to treatment, working out at the gym and generally feeling good. Throw in a few days of retail therapy including $100 worth of new underwear, and some killer Mission fish tacos, and my time spent in radiation did not suck. The last few weeks got tougher once my skin started to burn and burn it did. It turned dark purple and got really sore. It looked bad and didn't stop burning until a week after my last treatment which was when I lost all of my skin. Yeah, not much funny about that.
Directly after my tanning sessions in San Francisco, we took a vacation to Bali, Indonesia. Our family had been through the ringer. I had been staying in San Francisco the entire time and needed to reconnect with my husband and kids with what was left of my body and my brain. Things have been getting funnier ever since. First, there was the broken rib. Radiation weakens the bones so while I was out surfing, being bald and doing my Kelly Slater impressions (NOT), I broke one of my ribs. Oops. Really? So, I spent my tropical sunset evenings icing my chest while my skin sloughed off. You'd think that would be enough because we all know God NEVER gives us more than we can handle right? I can just see God sitting up there chuckling to Himself, "Watch this." A few days later, I was bitten by a Rhesus Monkey. A Monkey! Does that ever happen to anyone? Really? Tack on a Rabies Vax Series to a broken rib, second degree burns after five months of chemo and breast removal and I'm starting to think that maybe God has a sick sense of humor. I've had enough. "No, I'm pretty sure you can handle more...," says God. I will say that we stayed at the Hilton, got lots of free drinks and surfed everyday despite the monkey bites and broken ribs, so it kinda evened out.
What does any self-respecting, post-chemo, post-surgery, post-radiation, post-rib fracture, post monkey bite, mother of two, being thrown into chemically-induced menopause do when the going gets tough? Takes the kids to Disneyland of course!!! My husband treated me and our two, adrenaline, cracked-out kids to two days in the Magical Kingdom. Certain I would hurl, my adoring family dragged me onto California Screamin' six times but I showed them, (and God,) that I could handle it. I did not hurl. I even ate greasy food and sugar to boost my odds. BUT Nooooo! heh heh heh. I still got it. The girls were ecstatic and the joy of being there with them is indescribable. It was the reason for all the other crap I'd been through, and evidence I'd do it again if I had to.
School started in August. The hamster wheel of motherhood needed spinning and I jumped right on while my husband returned to work and the everyday grind that goes with being a father of two daughters, a husband, and King of his castle. The girls dove right in to school, soccer, martial arts, field trips, book reports and a World's Fair project. And all the magnificent people that came out of the woodwork to help my family survive a breast cancer diagnosis, disappeared into the woodwork from whence they came. I took over making dinner and suddenly, it's November. I find myself in a strange place, wondering, did that just happen? I'm well enough to re-engage into my life, taking care of my kids, doing the grocery shopping and checking the mail. I am very thankful for my faculties, but I am not done. I am still in the shadow of this monumental event. I have not reached my post-cancer potential. My recovery is not complete. Primarily, because I am still in treatment. However, life goes on pretty normally and I am happy everyday that I am able to navigate the simplest of schedules, celebrating the small victories and biding my time until my body is ready to respond to the brain that is ready to drive it. Until then, I am in a weird place. Most days, it's funny because life is generally pretty funny and lately, I plug into and out of the funny parts. My Herceptin infusion every three weeks and my new "cell phone pocket" in the left portion of my bra reinforces that yes, it really did happen and even after 14 months, it is still not over. As I transition into survivorship, I am so very grateful that I am here, grateful for Bali vacations and rollercoasters, grateful for broken ribs and monkey bites and that the lives of my husband and my kids have returned to a version of normalcy. I am trying to have patience and each day, I get a little better than I was the day before.....but I'm not there yet.
Tuesday, February 28, 2012
Fear
Recently, a very close friend asked me a very poignant question.
"How do you manage your fear?"
I was taken aback by this primarily because the close friend that asked it has always been what I perceive to be fearless. I've never seen her exhibit fear. I've known her for 33 years and while I know that she has her moments, she keeps them to herself. She does not manifest fear in the usual manner. She charges it. If I had to bet between my friend and a sabertooth tiger, I'd be hard-pressed not to bet against the tiger. Fear does not cripple her, it drives her...which is why her question to me caught me completely off guard. Suddenly, I realized that we are ALL vulnerable, and I am more vulnerable now than ever.
When I was first diagnosed with Breast Cancer, my greatest fear was for my children. How would they grow up and thrive without a mother? How would my husband manage given his job requires travel? I figured he'd probably get a 20 year-old Swedish nanny, so I stopped worrying about him pretty quickly. He's handsome. He'll figure it out. As for my kids, they are pretty resilient. They would probably do fine with a little more responsibility, a happy Papa... and a 20 year-old Swedish nanny.
But seriously, I have trouble with the question how do I manage my fear because I'm not sure what I'm afraid of. After 12 years in the emergency room, I've witnessed death, and it's usually at the end of a very long struggle which means death represents peace. Certainly, sudden death has a different and awful feeling, but natural death is not frightening to me. That is not to say that the possibility of a shortened life is not saddening. I love my life, my husband and kids and would like to go the long haul if I can, but I'm not afraid of the process of death, especially with plenty of narcotics in the world.
Cancer can bring pain and death. It can bring disability. It can change your life, but I could also get hit by a bus tomorrow. A lifetime of "what-if" doesn't get you off the couch, to the base of Everest or the top of a race course. Fearing the uncertain leads to a lifetime of banality.
And yet fear of the unknown is very real. I'd be lying if I said I didn't fear the unknown. It seems silly because the allure of the uncertain is also what drives us. My children have taught me that life is driven by the question, "What happens if I do this?" Well, if it happens to be hurling your sister down the driveway on a plastic push-car without a helmet, generally, it's probably going to leave a mark, changing fear of the unknown to fear of unanticipated trajectory. But there is also the possibility that if you fall in love with a guy living out of the back of his truck with no established earning future, working as a river guide, and a history of broken hearts behind him, something great might happen. Life is a gamble and while the unknown is frightening, it's also the most exciting.
I have no idea what to expect from the rest of my life. What seems like a hundred years ago, I had a life changing experience. I had it all figured out when I was 20 years old. I was on my way to an Olympic podium, I had a hot boyfriend, great ski sponsorships and my whole life was paved with success and endorsements....and then it was all changed by one little finish post. I woke up in an ICU with many broken bones which paled in comparison to my broken ego and I wondered what the world would hold for a 20 year old that put all her eggs into one basket. It turns out the best was yet to come. If there was anything I learned from crashing into that finish post, it was the old adage that anything that does not kill me makes me stronger and what lies ahead could very possibly be far better than anything I could design for myself.
What I fear now is hearing the following words from my oncologist: "Mrs. Robinson, you have cancer...again." Recurrence of metastatic cancer statistically comes back in the brain, liver or bone. I imagine that a recurrence of cancer would be psychologically devastating. Currently, we are throwing the kitchen sink at cancer the first time via western medicine. I am also banking on a new veggie diet, a complete lifestyle overhaul, and I have the "one breast bonus." I'm using my right breast as a decoy in hopes that if my breast cancer does come back, it will come back as breast cancer. Easily detectable and treatable, it might buy me another five years. Of course, there is no evidence or fact-based info that says it will work, but it gets me through the day.
So how do I manage my fear? I don't. I ignore it. I grasp at straws. I cling to good news and I stack my odds best I can to keep from stepping out in front of the sabertooth tiger. I throw myself in front of the baby tigers so the big one isn't as scary. I have given in to the fact that fearing the sabertooth tiger is pointless until you are standing right in front of it. So until it jumps out in front of you, keep making plans, charge the baby tigers, and revel in the good times and good friends. And when the big kitty does jump out in front of you...charge it... until it either backs down or swallows you whole.
Thursday, January 26, 2012
The Bottom
I was so happy to count down those last seconds with close friends that ultimately kicked 2011 to the curb. I am still getting chemotherapy. I still have a long road ahead but it was very therapeutic to put the initial parts of all of this behind me and write 2011 off as the year of surgeries and cancer. 2012 is slated (by me) to be the year of survival. It will be the year I rise out of the burning ashes that breast cancer chucked me into and the year that I transition into survivorhood.
I came out of the 2012 gate swinging. Whatever had me down in December, was overcome by the coming of the new year. I felt pretty great for my first 3 treatments. My energy seemed to return, my blood counts were good with enough white cells to beat infection and a hemoglobin of 11. I was hitting the treadmill and the weights without too much fallout.
Recently, I've been down. The fatigue has kicked in again and I feel like I am wearing a lead suit. I've put on weight and have progressed into full-blown menopause with hot flashes and strange internal temperature regulation issues keeping me up at night. My gastrointestinal system is rebelling. My eyelashes are gone and my eyebrows are trying hard to follow suit. My skin is so dry, I look like a raisin. I have bloody noses daily due to the dry, cold, California air despite the new humidifier. I am struggling. While I am successfully fighting my way through treatment, I have unsuccessfully managed to prevent turning into a cancer patient. I am very different than my former self and from those around me.
The exhaustion is staggering. I wake up feeling pretty good, ready to tackle my day. I get kids ready for school, make myself some breakfast and within an hour, I'm knackered. I try to push through it. All my life, I've tried to push through the unpleasant parts. After 25 years of sitting on freezing chairlifts or 12 years of ER nursing, I've learned that complaining and giving up do not serve me well. I've learned to overcome many obstacles in my life by charging straight at them. I've applied this theory to chemotherapy treatment and it is grossly ineffective. The harder I charge, the worse I get. Interestingly enough, the exhaustion does not manifest itself in physical disability. I don't get so tired that I collapse and sleep. Instead, my brain stops working. I no longer have a filter and my communication becomes short, curt, and abrupt as if using fewer words will save energy. When I am exhausted, I can no longer find words to describe my feelings nor communicate the fact that I'm going downhill fast. The inability to verbalize turns into frustration, which turns into anger which sucks energy that I already do not have. I lose my temper quickly with my kids. Patience flies out the window and all of us half expect my head to start turning 360 degrees. I said something terrible to my husband the other day. It was awful. The words that came out were not the message I wished to convey and they were hurtful and mean. I have no inhibition, no emotional control. I absorb the emotions around me, which with 7 and 9 year olds, tends to be something similar to a really bad acid trip.
I am not sure if it is the menopause or the chemo. The term "chemo brain" has been recognized as a significant side effect, and up to this point, I feel that my brain has not been hugely affected. However, now, my memory is worse than ever. Thoughts and important appointments drift in and out like wind. I've missed two massage appointments, which tells me I'm really losing it because with normal brain activity, I would selectively dump my entire schedule to make that highly coveted massage appointment. I am unable to multi-task. I have lost my ability to focus on the priority of the moment. "Squirrel!" is the new joke among my husband and friends as if I were an untrained puppy. I am easily distracted from the task at hand. The effects on my brain are frightening. I am told it is temporary but I only half believe it. I can barely remember the events of each week and all of my memories are hazy. I realize that I am hitting rock bottom. My physical and mental abilities are significantly affected and the person I have become is not the person I set out to be.
With two more treatments left, I know I'm going to make it. I have managed to dodge the evil germ and avoid infection which was my biggest fear surrounding my treatment. My heart is holding up great which was another concern given the cardiotoxicity of the medications. I meet my radiation oncologist tomorrow and start gearing up for 5 weeks of daily radiation. I'm told radiation is far easier than chemo, and I am hoping that the side effects of my chemo will subside. Sadly, because of the daily radiation treatments and because I am getting those treatments in San Francisco, I will be leaving home and staying in San Francisco 5 days a week. New challenges are on the horizon.
Because I know I will cross the chemo finish line in two weeks, I have allowed myself to go down. I run the gamut of emotions but I am not depressed. I am simply recognizing that this is the bottom. This is one of the darkest and scariest places I've ever had to go. I am tired and each day is difficult. My thoughts are random and unorganized and I am definitely the weak one of the herd. If this were the Serengeti, I'd be picked off in a heartbeat.
The importance of this is that I would prefer not to revisit this place. It means that for the rest of my life, I will compare this place to other dark places and this one will always win. I am letting it ruminate. I need to appreciate its value so that when times are good, I can revel in them. Soon, I will be digging myself out of this hole which will mean huge lifestyle changes with regards to diet and stress. My new, post chemo life is about to begin, and I don't ever want to forget what these last days of chemo are trying to teach me.
Every day, I fight to maintain normalcy. Whether it's a workout, making my own lunch or testing for my next belt at MMA, I fight the deterioration everyday by doing what I can. I can't stop the side effects, but I can slow them down. Hopefully, I can slow them down enough so that by the end of my last treatment, there is still a hint of me left. I need just a little of me to rebuild the new me, but I fear that these last two weeks will take the most of me.
I came out of the 2012 gate swinging. Whatever had me down in December, was overcome by the coming of the new year. I felt pretty great for my first 3 treatments. My energy seemed to return, my blood counts were good with enough white cells to beat infection and a hemoglobin of 11. I was hitting the treadmill and the weights without too much fallout.
Recently, I've been down. The fatigue has kicked in again and I feel like I am wearing a lead suit. I've put on weight and have progressed into full-blown menopause with hot flashes and strange internal temperature regulation issues keeping me up at night. My gastrointestinal system is rebelling. My eyelashes are gone and my eyebrows are trying hard to follow suit. My skin is so dry, I look like a raisin. I have bloody noses daily due to the dry, cold, California air despite the new humidifier. I am struggling. While I am successfully fighting my way through treatment, I have unsuccessfully managed to prevent turning into a cancer patient. I am very different than my former self and from those around me.
The exhaustion is staggering. I wake up feeling pretty good, ready to tackle my day. I get kids ready for school, make myself some breakfast and within an hour, I'm knackered. I try to push through it. All my life, I've tried to push through the unpleasant parts. After 25 years of sitting on freezing chairlifts or 12 years of ER nursing, I've learned that complaining and giving up do not serve me well. I've learned to overcome many obstacles in my life by charging straight at them. I've applied this theory to chemotherapy treatment and it is grossly ineffective. The harder I charge, the worse I get. Interestingly enough, the exhaustion does not manifest itself in physical disability. I don't get so tired that I collapse and sleep. Instead, my brain stops working. I no longer have a filter and my communication becomes short, curt, and abrupt as if using fewer words will save energy. When I am exhausted, I can no longer find words to describe my feelings nor communicate the fact that I'm going downhill fast. The inability to verbalize turns into frustration, which turns into anger which sucks energy that I already do not have. I lose my temper quickly with my kids. Patience flies out the window and all of us half expect my head to start turning 360 degrees. I said something terrible to my husband the other day. It was awful. The words that came out were not the message I wished to convey and they were hurtful and mean. I have no inhibition, no emotional control. I absorb the emotions around me, which with 7 and 9 year olds, tends to be something similar to a really bad acid trip.
I am not sure if it is the menopause or the chemo. The term "chemo brain" has been recognized as a significant side effect, and up to this point, I feel that my brain has not been hugely affected. However, now, my memory is worse than ever. Thoughts and important appointments drift in and out like wind. I've missed two massage appointments, which tells me I'm really losing it because with normal brain activity, I would selectively dump my entire schedule to make that highly coveted massage appointment. I am unable to multi-task. I have lost my ability to focus on the priority of the moment. "Squirrel!" is the new joke among my husband and friends as if I were an untrained puppy. I am easily distracted from the task at hand. The effects on my brain are frightening. I am told it is temporary but I only half believe it. I can barely remember the events of each week and all of my memories are hazy. I realize that I am hitting rock bottom. My physical and mental abilities are significantly affected and the person I have become is not the person I set out to be.
With two more treatments left, I know I'm going to make it. I have managed to dodge the evil germ and avoid infection which was my biggest fear surrounding my treatment. My heart is holding up great which was another concern given the cardiotoxicity of the medications. I meet my radiation oncologist tomorrow and start gearing up for 5 weeks of daily radiation. I'm told radiation is far easier than chemo, and I am hoping that the side effects of my chemo will subside. Sadly, because of the daily radiation treatments and because I am getting those treatments in San Francisco, I will be leaving home and staying in San Francisco 5 days a week. New challenges are on the horizon.
Because I know I will cross the chemo finish line in two weeks, I have allowed myself to go down. I run the gamut of emotions but I am not depressed. I am simply recognizing that this is the bottom. This is one of the darkest and scariest places I've ever had to go. I am tired and each day is difficult. My thoughts are random and unorganized and I am definitely the weak one of the herd. If this were the Serengeti, I'd be picked off in a heartbeat.
The importance of this is that I would prefer not to revisit this place. It means that for the rest of my life, I will compare this place to other dark places and this one will always win. I am letting it ruminate. I need to appreciate its value so that when times are good, I can revel in them. Soon, I will be digging myself out of this hole which will mean huge lifestyle changes with regards to diet and stress. My new, post chemo life is about to begin, and I don't ever want to forget what these last days of chemo are trying to teach me.
Every day, I fight to maintain normalcy. Whether it's a workout, making my own lunch or testing for my next belt at MMA, I fight the deterioration everyday by doing what I can. I can't stop the side effects, but I can slow them down. Hopefully, I can slow them down enough so that by the end of my last treatment, there is still a hint of me left. I need just a little of me to rebuild the new me, but I fear that these last two weeks will take the most of me.
Monday, January 16, 2012
Sarah
There's a woman at the infusion center that comes through right around lunchtime every Tuesday and offers to get lunch for the patients. She's an older woman, roughly 70's. She wears a turtleneck with a blue vest that is covered in pins. Each pin represents some cause, some group or something interesting. She's part of UCSF's Peer Support program, and she's a 12 year Breast Cancer survivor.
"Can I get you anything? Sandwich? A blanket? A martini? Dirty magazine?"
She's got a quick wit.
When my friends flew all the way from the eastern seaboard to take me to chemo, they got to meet Sarah. We were all wearing our "Save Second Base" T-shirts that Polly brought and Sarah got a huge kick out of them. Thus sparked the conversation about breast reconstruction and the like.
"Oh, I didn't bother with that," offered Sarah. "When you go that route, you're kind of stuck with what they give you. I prefer to be more flexible, so I just go with the adjustables."
"The adjustables?" I inquired.
"Yeah. Depending on how I'm feeling, I can choose to be an A or a double D!"
Now, all three of us are staring at her chest. She appeared to have two equal, A-cup sized bumps under her sweater.
"What are they?" I asked.
"Go ahead, have a squeeze," She retorted.
I was caught between a rock and a hard place. If you knew my friend Polly, you would know that the look on her face was the exact look of "Go ahead, I dare you. If you don't grab this woman's fake breasts, I'm going to be very disappointed in you." Meanwhile, Edith was giving me the eyebrows up version that said, "After all, we came all this way....."
So there I was, in the infusion center, feeling up the lunch lady.
They were like hollofil, the stuff they use to put in sleeping bags and ski gloves. Sarah explained that she stuffed her bra with the stuff and it was great. Easy for her. She had a double mastectomy. I had a left only. There was no way that I was going to get hollofil to look like the right sided ski jump I had going on. She went on to say that there were all sorts of other options such as silicone prosthetics. She said that they were a little spendier but they looked a little more "life-like." She also referred me to the gift shop on the first floor where they sell them.
A week later, I had to make two trips to San Francisco. My counts had dropped and I needed an injection of a drug that would stimulate my blood cell production and keep my immune system alive. I drove down by myself. While I was there, I spent some time with the gift shop ladies who proceeded to explain all the possibilities of breast prosthetic options. Before i knew it, I was in a dressing room trying on bras and silicone implants. I was amazed at how close to real the implant looked.
Now, I'm not one of those girls whose femininity is all tied up in the size and shape of her bust. I'm perfectly content being small chested and have no qualms about lopping off the right side to match the left. However, that requires major surgery. I'm not in a place to go there right now. However, all of my shirts fit just a little funky. They hang sideways, so my neckline on all of my shirts looks like I put my shirt on the wrong way. It's distracting and when people figure out why my shirt looks so screwy, they get a pitiful look on their face. It's annoying. I decided that with Christmas and New Year's approaching, i was probably going to want to wear something pretty and strapless and it would look really dumb hanging off one side. I got the implant.
Ironically, insurance companies are supposed to cover this as a prosthetic. Your doctor can write you a prescription for a breast prosthesis and the insurance company will supposedly reimburse you, unless they scream that you got it "out-of-network" which means they're not going to pay for the nice ones. They'll send you down to the Breast Bargain Basement, their "in-network" breast prosthetic source. In other words, if you buy a used one, insurance will cover it. Insurance companies are weasels. They try to get out of everything.
Anyway, the next day, I came back and told Sarah about my experience. She was moved and excited because she felt she had made a difference. I told her if she really wanted to feel like she was making a difference, she could bring me a grilled cheese sandwich with turkey and tomato....
Weeks later, I got approached by Sarah and the media folks of UCSF. They wanted to interview me about Sarah and what she brings to the infusion center. Of course, I was honored to say yes and happy they would ask me. Seemed like there weren't a lot of patients who had the same sarcasm and gallows humor as Sarah and I had. We were two peas in a pod.
I was suddenly surrounded by people who thought it was so great that I would be interviewed and what a big deal it was. Of course, I knew that Sarah's humor and presence in the infusion center was important for patients and nurses because she is a seasoned resource. She's been through all the hell that breast cancer treatment offers and she's come out on the other side grateful for her life and an opportunity to make a difference in someone else's. Certainly, I probably wouldn't call the Peer Support line on my own but when the Peer Support program comes to you, it's nice to meet a woman who not only will offer you guidance but let you feel her up in the process.
Breast cancer has a strange stigma. Not everyone talks about it because women feel differently about their breasts. Some women are deeply affected by the loss of their breasts as a loss of their femininity or their identity. I don't miss my left breast but I realized that I do miss filling out my shirt in a semi-normal way. I found that getting information from other people about breast stuff was seemingly uncomfortable for people to talk about. Spark up a conversation about breast reconstruction and everybody thinks you want to be a stripper. I was very grateful that not only was Sarah uninhibited about talking openly, but she was witty and funny and put me at ease. I have no doubt that she suffered at one point. I am certain that she experienced the same hideous side effects, feared a case of pneumonia as a death sentence, and gutted her way through the chemo and radiation like everyone else. Her humor is not a mask for the path she took, but rather a way to keep you out of your own pit of despair. I am pretty sure her story has its dark parts, and I'm grateful that she doesn't ask me to relive them with her.
For those of us who lack humor or perspective, survivors like Sarah make surviving Cancer a very real possibility. The fear of who I might be after all these toxic concoctions and laser beams is very real. I wonder daily how all this chemical poison is going to affect my nervous system, my sense of humor or my physical abilities. Will I always have a bad memory? Will I be slower with a snappy comeback at parties? Will I need to take the shortbus to do my grocery shopping? Sarah provides the very real possibility that those of us still in treatment are not doomed. There's a chance that we might all come out of this not only alive, but witty and funny as well. I am grateful that UCSF recognizes the importance of peer support even if cancer patients don't until it walks in and offers to bring you lunch.
Who knows? Maybe when all this over, I'll be the lunch lady at my old job offering a squeeze of my silicone implant......or not. Either way, I'll be happy to have the option and grateful to those who do that job.
"Can I get you anything? Sandwich? A blanket? A martini? Dirty magazine?"
She's got a quick wit.
When my friends flew all the way from the eastern seaboard to take me to chemo, they got to meet Sarah. We were all wearing our "Save Second Base" T-shirts that Polly brought and Sarah got a huge kick out of them. Thus sparked the conversation about breast reconstruction and the like.
"Oh, I didn't bother with that," offered Sarah. "When you go that route, you're kind of stuck with what they give you. I prefer to be more flexible, so I just go with the adjustables."
"The adjustables?" I inquired.
"Yeah. Depending on how I'm feeling, I can choose to be an A or a double D!"
Now, all three of us are staring at her chest. She appeared to have two equal, A-cup sized bumps under her sweater.
"What are they?" I asked.
"Go ahead, have a squeeze," She retorted.
I was caught between a rock and a hard place. If you knew my friend Polly, you would know that the look on her face was the exact look of "Go ahead, I dare you. If you don't grab this woman's fake breasts, I'm going to be very disappointed in you." Meanwhile, Edith was giving me the eyebrows up version that said, "After all, we came all this way....."
So there I was, in the infusion center, feeling up the lunch lady.
They were like hollofil, the stuff they use to put in sleeping bags and ski gloves. Sarah explained that she stuffed her bra with the stuff and it was great. Easy for her. She had a double mastectomy. I had a left only. There was no way that I was going to get hollofil to look like the right sided ski jump I had going on. She went on to say that there were all sorts of other options such as silicone prosthetics. She said that they were a little spendier but they looked a little more "life-like." She also referred me to the gift shop on the first floor where they sell them.
A week later, I had to make two trips to San Francisco. My counts had dropped and I needed an injection of a drug that would stimulate my blood cell production and keep my immune system alive. I drove down by myself. While I was there, I spent some time with the gift shop ladies who proceeded to explain all the possibilities of breast prosthetic options. Before i knew it, I was in a dressing room trying on bras and silicone implants. I was amazed at how close to real the implant looked.
Now, I'm not one of those girls whose femininity is all tied up in the size and shape of her bust. I'm perfectly content being small chested and have no qualms about lopping off the right side to match the left. However, that requires major surgery. I'm not in a place to go there right now. However, all of my shirts fit just a little funky. They hang sideways, so my neckline on all of my shirts looks like I put my shirt on the wrong way. It's distracting and when people figure out why my shirt looks so screwy, they get a pitiful look on their face. It's annoying. I decided that with Christmas and New Year's approaching, i was probably going to want to wear something pretty and strapless and it would look really dumb hanging off one side. I got the implant.
Ironically, insurance companies are supposed to cover this as a prosthetic. Your doctor can write you a prescription for a breast prosthesis and the insurance company will supposedly reimburse you, unless they scream that you got it "out-of-network" which means they're not going to pay for the nice ones. They'll send you down to the Breast Bargain Basement, their "in-network" breast prosthetic source. In other words, if you buy a used one, insurance will cover it. Insurance companies are weasels. They try to get out of everything.
Anyway, the next day, I came back and told Sarah about my experience. She was moved and excited because she felt she had made a difference. I told her if she really wanted to feel like she was making a difference, she could bring me a grilled cheese sandwich with turkey and tomato....
Weeks later, I got approached by Sarah and the media folks of UCSF. They wanted to interview me about Sarah and what she brings to the infusion center. Of course, I was honored to say yes and happy they would ask me. Seemed like there weren't a lot of patients who had the same sarcasm and gallows humor as Sarah and I had. We were two peas in a pod.
I was suddenly surrounded by people who thought it was so great that I would be interviewed and what a big deal it was. Of course, I knew that Sarah's humor and presence in the infusion center was important for patients and nurses because she is a seasoned resource. She's been through all the hell that breast cancer treatment offers and she's come out on the other side grateful for her life and an opportunity to make a difference in someone else's. Certainly, I probably wouldn't call the Peer Support line on my own but when the Peer Support program comes to you, it's nice to meet a woman who not only will offer you guidance but let you feel her up in the process.
Breast cancer has a strange stigma. Not everyone talks about it because women feel differently about their breasts. Some women are deeply affected by the loss of their breasts as a loss of their femininity or their identity. I don't miss my left breast but I realized that I do miss filling out my shirt in a semi-normal way. I found that getting information from other people about breast stuff was seemingly uncomfortable for people to talk about. Spark up a conversation about breast reconstruction and everybody thinks you want to be a stripper. I was very grateful that not only was Sarah uninhibited about talking openly, but she was witty and funny and put me at ease. I have no doubt that she suffered at one point. I am certain that she experienced the same hideous side effects, feared a case of pneumonia as a death sentence, and gutted her way through the chemo and radiation like everyone else. Her humor is not a mask for the path she took, but rather a way to keep you out of your own pit of despair. I am pretty sure her story has its dark parts, and I'm grateful that she doesn't ask me to relive them with her.
For those of us who lack humor or perspective, survivors like Sarah make surviving Cancer a very real possibility. The fear of who I might be after all these toxic concoctions and laser beams is very real. I wonder daily how all this chemical poison is going to affect my nervous system, my sense of humor or my physical abilities. Will I always have a bad memory? Will I be slower with a snappy comeback at parties? Will I need to take the shortbus to do my grocery shopping? Sarah provides the very real possibility that those of us still in treatment are not doomed. There's a chance that we might all come out of this not only alive, but witty and funny as well. I am grateful that UCSF recognizes the importance of peer support even if cancer patients don't until it walks in and offers to bring you lunch.
Who knows? Maybe when all this over, I'll be the lunch lady at my old job offering a squeeze of my silicone implant......or not. Either way, I'll be happy to have the option and grateful to those who do that job.
Thursday, January 12, 2012
The Pity Party of 2011
"The past is history. The future's a mystery. Today is a gift, which is why we call it the present." ~ Babtunde Olatunji
It all started out with a hip replacement. I feel like I've lived a lifetime since then. 2011 was riddled with drama. So glad it is over. I look back and think about how I agonized over my hip replacement, my daughter's soccer future and my future as a nurse. Now, I contemplate cancer treatments, side effects and clinical trials. Perspective ain't just a river in Egypt....er, something like that.
One year ago today, I remember it dawned on me that they were going to saw off the end of my femur to fix my hip. I remember thinking, wait a minute, my femur isn't the problem....but that's how you fix a hip and the sacrifice you make. Now that I am pain-free and able to put my socks and pants on without interesting acrobatics, it seems trivial, but days before my surgery, I remember obsessing about it. "Back then," I was also eating sushi, drinking lemontinis and buying hair products. Oh, the difference a year makes! Now I'm blending vegetables, drinking kombucha tea, and watching my eyelashes fall out.
My hip replacement was a success. No blood clots. No sepsis and no adverse outcome. I did what my doctor and my physical therapist told me to do and spent countless hours stretching and doing my figure-4 exercises for what seemed like forever. It took 6 months to really feel like my hip was good and stable. I am thankful that it is, but it was a long haul in the first half of 2011
In the middle of a hip replacement, Stella and Zoe tried out and secured their spots on a competitive club soccer team. We were so excited to work with her amazing coach for another season. So much so, that I agreed to be Zoe's team's Manager. We were poised and ready for another banner year of soccer with Coach AJ ...until the soccer club fired him. From there, our entire soccer year unraveled. I resigned my manager position, we pulled Zoe from the club and Stella, at the tender age of 9, made some very grown up choices between her team and her self-esteem. It was painful to watch. Zoe's season was salvaged when she returned to the team she played with last year, which turned out to make her year super fun. Stella stood on the sidelines and supported her sister. Meanwhile, I assisted Zoe's coach to keep myself from going postal on the entire Northern California competitive soccer system. Other than our experiences with Zoe's team, I was very disappointed with Northern California Soccer. Clearly, I'm not the only one because things are changing in big ways for next year, but the whole thing left a bad taste.
After the hip replacement and the soccer nightmare of a lifetime, I went back to work, which turned out to be quite challenging. My department was undergoing major changes and there were a lot of process issues that were needing upper-level attention. This created some inter-departmental strife and difficult days for us worker bees. You know you are having low job satisfaction when you look at the bright side of cancer as not having to go to work for awhile. Work was definitely less fun.
We short-saled a house in early 2011, which decimated our credit rating. Marek had hernia surgery and Stella broke her wrist right about the time we were going to salvage her soccer season. And then I got Cancer.
Thousands of healthcare dollars later, it's safe to say that 2011 was a mess. I look back on all of it and wonder how we are all still standing. Certainly, our new involvement with the folks at West Coast Martial Arts and the fun we had with Zoe's soccer team had a lot to do with our survival. The gift of friendship, the kindness of acquaintances and the outpouring of community support has clearly kept me from jumping off of any bridges. Another life-deafening epiphane I had last year, is I used to think of myself as somewhat insignificant unless I was overachieving. Now I realize that just being present for another is reason alone for being here. I don't have to be super nurse, super wife, or super mom, world class skier or class V kayaker, nor do I need two breasts or a full head of hair to feel whole. This is a major mid-life revelation for an only child trying twice as hard to be half as good, which means that 2011 was not for nothing. Heck, it took the events of 2011 what 44 years of my life did not accomplish. I am resolved to cashing in on 2011's blood, sweat, and tears (and bullet-hard bowel movements). I will be turning all of 2011's bad karma into 2012's good fortune, preferably from the side of the pool in my front yard. 2011 had a purpose. It's purpose was to make 2012 look really great. So, come for a swim. Let me fix you a veggie smoothie, a glass of Kombucha or some crispy Kale. 2012 is for living it up. It's time to be present and trust me, today is a gift.
It all started out with a hip replacement. I feel like I've lived a lifetime since then. 2011 was riddled with drama. So glad it is over. I look back and think about how I agonized over my hip replacement, my daughter's soccer future and my future as a nurse. Now, I contemplate cancer treatments, side effects and clinical trials. Perspective ain't just a river in Egypt....er, something like that.
One year ago today, I remember it dawned on me that they were going to saw off the end of my femur to fix my hip. I remember thinking, wait a minute, my femur isn't the problem....but that's how you fix a hip and the sacrifice you make. Now that I am pain-free and able to put my socks and pants on without interesting acrobatics, it seems trivial, but days before my surgery, I remember obsessing about it. "Back then," I was also eating sushi, drinking lemontinis and buying hair products. Oh, the difference a year makes! Now I'm blending vegetables, drinking kombucha tea, and watching my eyelashes fall out.
My hip replacement was a success. No blood clots. No sepsis and no adverse outcome. I did what my doctor and my physical therapist told me to do and spent countless hours stretching and doing my figure-4 exercises for what seemed like forever. It took 6 months to really feel like my hip was good and stable. I am thankful that it is, but it was a long haul in the first half of 2011
In the middle of a hip replacement, Stella and Zoe tried out and secured their spots on a competitive club soccer team. We were so excited to work with her amazing coach for another season. So much so, that I agreed to be Zoe's team's Manager. We were poised and ready for another banner year of soccer with Coach AJ ...until the soccer club fired him. From there, our entire soccer year unraveled. I resigned my manager position, we pulled Zoe from the club and Stella, at the tender age of 9, made some very grown up choices between her team and her self-esteem. It was painful to watch. Zoe's season was salvaged when she returned to the team she played with last year, which turned out to make her year super fun. Stella stood on the sidelines and supported her sister. Meanwhile, I assisted Zoe's coach to keep myself from going postal on the entire Northern California competitive soccer system. Other than our experiences with Zoe's team, I was very disappointed with Northern California Soccer. Clearly, I'm not the only one because things are changing in big ways for next year, but the whole thing left a bad taste.
After the hip replacement and the soccer nightmare of a lifetime, I went back to work, which turned out to be quite challenging. My department was undergoing major changes and there were a lot of process issues that were needing upper-level attention. This created some inter-departmental strife and difficult days for us worker bees. You know you are having low job satisfaction when you look at the bright side of cancer as not having to go to work for awhile. Work was definitely less fun.
We short-saled a house in early 2011, which decimated our credit rating. Marek had hernia surgery and Stella broke her wrist right about the time we were going to salvage her soccer season. And then I got Cancer.
Thousands of healthcare dollars later, it's safe to say that 2011 was a mess. I look back on all of it and wonder how we are all still standing. Certainly, our new involvement with the folks at West Coast Martial Arts and the fun we had with Zoe's soccer team had a lot to do with our survival. The gift of friendship, the kindness of acquaintances and the outpouring of community support has clearly kept me from jumping off of any bridges. Another life-deafening epiphane I had last year, is I used to think of myself as somewhat insignificant unless I was overachieving. Now I realize that just being present for another is reason alone for being here. I don't have to be super nurse, super wife, or super mom, world class skier or class V kayaker, nor do I need two breasts or a full head of hair to feel whole. This is a major mid-life revelation for an only child trying twice as hard to be half as good, which means that 2011 was not for nothing. Heck, it took the events of 2011 what 44 years of my life did not accomplish. I am resolved to cashing in on 2011's blood, sweat, and tears (and bullet-hard bowel movements). I will be turning all of 2011's bad karma into 2012's good fortune, preferably from the side of the pool in my front yard. 2011 had a purpose. It's purpose was to make 2012 look really great. So, come for a swim. Let me fix you a veggie smoothie, a glass of Kombucha or some crispy Kale. 2012 is for living it up. It's time to be present and trust me, today is a gift.
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