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.
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