The interesting thing about radiation therapy is the effects are latent. You don't see the maximum effect until after the treatment is complete. Effects continue to evolve 2-3 weeks after treatment is done so even though you can celebrate that treatment is complete, you're not exactly out of the proverbial woods.
Yesterday I experienced the first real cognitive meltdown associated with the side effects of radiation therapy to my brain. Emotions tend to be difficult to reign in once they are underway, so I try not to choose a negative one because it can have a significant impact on multiple levels. It's like an avalanche on a steep mountainside, picking up speed, momentum and lethality as it grows into a monster.
Anger is the craziest. I am able to go from 0 to totally pissed off in a matter of seconds, which can lay waste to every positive thing that lay in front of me. I really don't like anger because it's so tough on the people around me and in my case, 12 year-old and 14 year-old daughters, who don't need to see Mom's head spin on a 360 degree axis. Sometimes, in their case, an expression of anger sends the very effective message that a particular behavior is not acceptable as long as that anger is reigned in and controlled effectively. However, my problem is the anger beast just gains momentum and doesn't stop, finding more things to be angry about, and turning a very small irritation into a global crisis such as the end of the world or complete and total planetary devastation.
So I don't choose anger. I choose passivity. I choose to let anger wash over me. It's not the end of the world I tell myself. I choose not to engage to keep the beast in its cage. I choose to walk away from a battle I will certainly not win.
Then there is sadness, sorrow and despair. I don't like these either because they are consumptive. Once the path of sadness is chosen, it compounds to sorrow, despair, depression, and my least favorite of all, hopelessness. It's a deep, dark hole that is difficult to escape, and given the level of radiation impairment, I am not too proud to think I can survive it.
So I don't choose sadness either.
I do believe that emotions are a choice. We can choose our emotions based on how we think about things. How we choose to think about something, is how we control how we feel about something. For example, you can choose to think that getting cancer is unlucky or unfair with a resulting feeling of anger or sadness, which you then share with your already angry and sad world, thus perpetuating feelings of anger and sadness and an environment of despair. Most people won't call you on this one, (in the case of cancer) because there aren't many folks who can dispute the fact that cancer sucks. But you can choose. You can look for the good part of cancer, the gift, the opportunity, the part that inspires gratitude, hope, and joy, and the part that most people untouched by cancer don't understand. This choice can change the world for the better, and this is the choice I strive to make (or try to) because I need the world around me to be better to help me fight it.
However, anger and sadness can suck you in in a weak moment. Sadly, my efforts failed me yesterday and I chose the dark side.
I couldn't find anything remotely funny, humorous, positive or good about my situation or what was currently happening. It seemed as if the universe was conspiring against my best efforts to choose only positive emotions by putting every irritatingly, possible example in my way and taunting me to choose a positive response. It felt like a test and I chose to fail it on purpose. I chose to let all those negative thoughts and emotions have their moment. All. At. Once.
.
It began with a tantrum of epic proportions, full of rage, and frustration that would mortify a room full of sociopathic, menopausal women. I chose anger, fury, and outrage on a GLOBAL scale. I screamed to the void about woe is me, and fuck that person that should get it, but doesn't, and why do the people I need the most run the farthest away? I cursed the person, a full evolutionary step behind me, that had the audacity to misinterpret my best intentions and attack me for making the most of my life. I raged over the selfishness of parents who allow their children to feel unloved, unwanted, and unappreciated, and then expect those same children to magically be pillars of society and to come to their parent's rescue when times get hard. I ranted about the unfairness of poverty, the unrealistic expectations of women to do 10 times the work for half the credit and the stupidity of a nation that would choose the worst of us to lead us, and the unnecessary losses of good people for stupid reasons. I tantrumed, raged, hated, and cursed everything, including darkness, the weather, and cancer.
And not so surprisingly, this led to a cascade of passionately deep sadness.
Sad for my kids. Sad for my ever supportive husband. Sad for the people who don't get it and never will. Sad that I can't see out of my left eye, that my head hurts, that my balance is off, and that I feel like vomiting all the time. Sad for the fact that I wanted so badly to punch someone and realized that one explosive burst of energy would cripple me for a full day. Sad to be weak. Sad for myself. Sad that I allowed myself to rage so irresponsibly. Sad that I lost compassion and understanding. Sad that I failed myself. Sad that I didn't rise above.....
It took about an hour, ending in tears and expletives, some fist pounding, and apologies to the universe. It ended with surrender, albeit gratefully inconsequential, 3 new episodes of Blacklist, and a coerced compassion for the cabbage patch that I will soon abandon out of principle. The effects of intracranial swelling continue to challenge my noble attempts to behave responsibly, and I am hoping to see an improvement of symptoms over the next couple of weeks. I'm looking forward to hanging with some great, evolutionarily-superior friends who get it, the continued kindness of our amazing community who also get it, and the hopes that radiation therapy will result in some new, cool, super powers that will allow me to bring good things to all those who are standing by us.
This is the human part of surviving. It's unprecedented fatigue, emotional lability, and unbridled vulnerability. It is the universe reminding me how small and insignificant I am and that doing one's best to rise above and be something better is more than just a noble cause, but rather the key to survival. Its about accepting yourself, right here, right now and being okay with the idea that this may be as good as it gets. You have to be the goodness you want to see in this world in order to earn your place in it, and you can't let the miscreants yank you off your evolutionary step in the process. For now, I'm being present, hoping for more, accepting less, and trying to behave responsibly. Wish me luck, because tomorrow is another day.
Saturday, September 17, 2016
Wednesday, September 14, 2016
One More
9 treatments down, one left. After a lifetime of sport, running rivers and martial arts, I can do "10" of anything. 10 sit-ups? got it. 10 push-ups? easy. 10 pull-ups? yep. So ten radiation treatments to the brain is a piece of cake right?
I'm not gonna lie. Anytime they bolt your head to a table in a wire mesh mask, and drive a bunch of outer space rays into your head, it's gonna leave a mark. The fatigue and nausea are staggering....Only ten treatments, you only need to complete 10....
I've had plenty of trainers tell me, "Come on [dickless]!!! You can do one more!" I can hear them yelling at me while I try to perform some physically relevant task as my muscles shake, the urge to vomit looms, and the sweat pours from my forehead to make my eyes sting. As the linear accelerator moves around my head and cranks up the gamma rays, I can smell the radiation and it makes my stomach turn. Hiroshima anyone? Chernobyl? Okay, I'm exaggerating because (unlike Hiroshima and Chernobyl) my radiation is clean and focused, but make no mistake that the intention is to kill brain cells with radiation sickness. MY brains cells albeit cancerous ones. One more treatment. Just one.
We won't know if it's working for 3 months. Apparently, cancer lesions don't just shrivel up and die, although I envision this happening for my own personal satisfaction. I almost wish I could hear those little cancer cells screaming, begging for mercy. Funny thing about Cancer is that it's my own cells. My own cells are trying to kill me! Ungrateful bastards. I have treated this body like a virtual temple! Plenty of exercise, organic foods and great living, yet I am betrayed by my own genetics. After a lifetime of pushing myself to be a stronger, better, faster human, I can only speculate that my cells got a little pissed off from having to constantly recover from doing one more rep, one more set, one more anything and they are having their revenge. I drove myself into a constant state of inflammation where my cells were constantly being asked to recover and create stronger, better, tissues. Now the great irony is I have to do one more radiation treatment because those same cells insist on growing out of control. The very training that got me here, is the very training I will need to survive. What my cells don't understand is that if they keep trying to exact revenge on me, they are going to kill ALL of me, including themselves. That is simply not an option, so we are at war.
I'm not sure why I have to walk this path. I keep searching reasons why. Where did I go wrong? What could I have done better? My husband keeps telling me, "It's not your fault you got Cancer," but I know I had a role and the only way to keep this from happening again is to address the behavior that got me here. I search for clues and answers and now I've got every Tom, Dick and Harry trying to sell me on some non-FDA approved treatment that they swear is the answer. At this point, I'm tempted to try anything which is a dangerous place to be for a cancer patient, but I stay the course outlined by my very brilliant medical team. So far, the fat-free, sugar-free, gluten-free, paleo, vegan, organic, non-GMO, approach has failed miserably. Brilliant minds the world over are trying to find an answer for which I am grateful beyond words, but time is bearing down on me. I can probably survive this round in hopes that this puts the nail in cancer's coffin, but if it keeps coming back, there will come a time where dogged stubbornness and unbridled determination are no longer successful. I want to beat this, now. The unfortunate reality is there is no cure for breast cancer. You can only beat it back. Until the brilliant minds of the world find a cure, and friends the world over continue to inspire me to tears, I can rise above. I can do one more treatment, shave my head one more time, and wake up one more day because that's what I do. That is how I cope. There's nowhere to go but forward, and I can do one more of anything. Just. One. More.
I'm not gonna lie. Anytime they bolt your head to a table in a wire mesh mask, and drive a bunch of outer space rays into your head, it's gonna leave a mark. The fatigue and nausea are staggering....Only ten treatments, you only need to complete 10....
I've had plenty of trainers tell me, "Come on [dickless]!!! You can do one more!" I can hear them yelling at me while I try to perform some physically relevant task as my muscles shake, the urge to vomit looms, and the sweat pours from my forehead to make my eyes sting. As the linear accelerator moves around my head and cranks up the gamma rays, I can smell the radiation and it makes my stomach turn. Hiroshima anyone? Chernobyl? Okay, I'm exaggerating because (unlike Hiroshima and Chernobyl) my radiation is clean and focused, but make no mistake that the intention is to kill brain cells with radiation sickness. MY brains cells albeit cancerous ones. One more treatment. Just one.
We won't know if it's working for 3 months. Apparently, cancer lesions don't just shrivel up and die, although I envision this happening for my own personal satisfaction. I almost wish I could hear those little cancer cells screaming, begging for mercy. Funny thing about Cancer is that it's my own cells. My own cells are trying to kill me! Ungrateful bastards. I have treated this body like a virtual temple! Plenty of exercise, organic foods and great living, yet I am betrayed by my own genetics. After a lifetime of pushing myself to be a stronger, better, faster human, I can only speculate that my cells got a little pissed off from having to constantly recover from doing one more rep, one more set, one more anything and they are having their revenge. I drove myself into a constant state of inflammation where my cells were constantly being asked to recover and create stronger, better, tissues. Now the great irony is I have to do one more radiation treatment because those same cells insist on growing out of control. The very training that got me here, is the very training I will need to survive. What my cells don't understand is that if they keep trying to exact revenge on me, they are going to kill ALL of me, including themselves. That is simply not an option, so we are at war.
I'm not sure why I have to walk this path. I keep searching reasons why. Where did I go wrong? What could I have done better? My husband keeps telling me, "It's not your fault you got Cancer," but I know I had a role and the only way to keep this from happening again is to address the behavior that got me here. I search for clues and answers and now I've got every Tom, Dick and Harry trying to sell me on some non-FDA approved treatment that they swear is the answer. At this point, I'm tempted to try anything which is a dangerous place to be for a cancer patient, but I stay the course outlined by my very brilliant medical team. So far, the fat-free, sugar-free, gluten-free, paleo, vegan, organic, non-GMO, approach has failed miserably. Brilliant minds the world over are trying to find an answer for which I am grateful beyond words, but time is bearing down on me. I can probably survive this round in hopes that this puts the nail in cancer's coffin, but if it keeps coming back, there will come a time where dogged stubbornness and unbridled determination are no longer successful. I want to beat this, now. The unfortunate reality is there is no cure for breast cancer. You can only beat it back. Until the brilliant minds of the world find a cure, and friends the world over continue to inspire me to tears, I can rise above. I can do one more treatment, shave my head one more time, and wake up one more day because that's what I do. That is how I cope. There's nowhere to go but forward, and I can do one more of anything. Just. One. More.
Saturday, September 3, 2016
Jimmy Fallon! Where are you?
Weekend update is here! I need Jimmy Fallon to bring some laughter to this mess. So much good and bad news, it's tough to keep up. As I always say, it's all just "news," and the only news worth really glomming on to is the good stuff, so here goes.
My last post indicated that I would be starting treatment on September 15th. Well, the more I thought about it, the more I didn't like >100 lesions reaching puberty in my brain, so I decided to pound the table a bit.
Meet Doctor Goldsmith, the latest sniper on my crackerjack med team. He's Army trained, did his residency at UCSF with my other awesome Rad Onc and comes highly recommended. He's just down the street which makes all of this much easier. He's a super cool guy and operates a ginormous Linear Accelerator that targets the cancer cells in my brain. I like him and I think he's up for the job. So, I took my UCSF scans to his office and made an attempt to make an appointment. Stymied by his admin, I decided to be that nightmare patient that shows up and demands an appointment. Okay, I've worked in healthcare and I understand that everyone's emergency is their own emergency and should be treated as such. However, in the ER, we sort you based on need. If you are having the big one, bleeding to death, or can't breathe (among a few other things), we put you on the top of the list. Well, it's different in clinical medicine. First, they get your referral. Then, they request the scans/bloodwork/doctor's notes so that the physician treating you can "sort" you within his/her practice. Rightly, or wrongly, I felt like a bunch of cancer cells in my brain moved me up the list. Brain Mets people. What if it was your brain?
So, I skipped a couple steps. UCSF overnighted my info to the admin staff (per my request) so all of that was en route. Then, I showed up. I hand-delivered the scans I knew the doctor would need to make a determination to the admin, and she assured me the doctor would see me Tuesday or Wednesday of the following week (7-8 days away).
Let's do some math. You have >100 lesions in your brain trying to kill you by growing. Let's just say they all grow half as big. Your situation has now worsened 1 ½ times. The key to killing cancer is killing small, weak collections of cells that have no foothold, so if you think I am going to let a few pre-pubescent cancer cells mature in my brain over 7-8 days, forget it.
After the admin described the process of getting an appointment (she didn't know I worked in healthcare obviously), I asked her how many Brain Metastasis patients the office was currently treating. She admitted two. I decided they had room. I let her know that I was recently diagnosed by UCSF with over 100 lesions on my brain and throughout my body, positively confirmed by biopsy as a return of my formerly Stage III, now Stage IV metastatic breast cancer, and that I would like to begin treatment as soon as possible. I was polite. I was direct, but not rude, clearly implying that I was not willing to wait a week. She called the next day. "Doctor would like to see you tomorrow."
Okay, so we've established that Dr. Goldsmith is a can-do guy. He's a go-getter. He's a get 'er done, son kinda doc. The team scheduled my "simulation" (A.K.A. Hannibal Lecter mask-fitting) following my appointment. AND he offered to begin treatment that afternoon. Yes, Yes, and yes please.
We had already done the math, the research, the side effect profile, and consulted three certified radiation oncologists.... Whole Brain Radiation Treatment (WBRT) is the next step for people with my profile. Additionally, I am unable to begin systemic therapy until after my radiation treatment concludes because the radiation effects the drugs I will be treated with. The sooner I get this done, the sooner I can bring on the next cancer-killing machine.
I started radiation treatment that day.
So far, I can still tie my shoes and do higher math. I am told my short-term memory will suffer, but it's already affected, so that's nothing new. The loss of my hair is inevitable which is the saddest part for me. It took me three years to get it this length. I love having hair. I know, it's so superficial and childish, but losing my hair is a rough side effect. I've always had long thick hair. It's one part of me that's unique to me and with two daughters in the house with long gorgeous hair, the contrast is glaring. Scarves are not my thing and baseball caps don't fit without some hair. Beanies are sweet and look good in winter but not when it's 90 degrees outside. This is one of those "suck-it-up" parts of cancer. Want hair? or 5-10 more years? I'll take the years. Some good news is I will only lose the hair in the field of treatment. Therefore, I get to keep my eyelashes and possibly, my eyebrows. This is kind of a huge win.
UCSF continues to run tests on bloodwork and tissue samples. One of the therapies suggested is a cutting edge gene therapy where they sequence my DNA and the DNA of cancer cells to determine where in the genetic code things are going awry. That's some cool science and where your hard-earned cancer dollars are being spent. There are a number of hormone adjuvant treatments that can be effective (before chemo) and depending on the tissue profile, I might qualify for ALL of them! Yay! There are also multiple clinical trials and experimental therapies available to Stage IV patients. I leveled up so I get to move up the qualifications list. Radiation treatment will end September 15th. I'll be pretty sick and fairly knackered so don't panic if you don't hear from me. I will try to post updates here but I'm working on expanding my website too for short versions.
The hubs and the girls are doing best as can be expected. Marek is a pillar of greatness, making all of this up as he goes along. He keeps me in check, reminds me when memory fails, and keeps me from overestimating my abilities given my proclivities (a HUGE, thankless job).
As of right now, textbook prognosis is 3-5 years. If treatments are effective, it can be as long as 15 or 20. So don't write those long, tearful goodbyes just yet. I still have a few bucket list items to knock off, a few loved ones left to hug and a mountain of friends to visit. It's business as usual around here planning the next adventure, cleaning the kitchen and trying to remember where I left my keys. FYI, I will be playing the cancer card this round, so if I show up on your doorstep with two tickets to bungee -jumping in india, you are required to participate. Just sayin'. So increase that health insurance and get those passports ready! Love to all and thank you for reading.
My last post indicated that I would be starting treatment on September 15th. Well, the more I thought about it, the more I didn't like >100 lesions reaching puberty in my brain, so I decided to pound the table a bit.
Meet Doctor Goldsmith, the latest sniper on my crackerjack med team. He's Army trained, did his residency at UCSF with my other awesome Rad Onc and comes highly recommended. He's just down the street which makes all of this much easier. He's a super cool guy and operates a ginormous Linear Accelerator that targets the cancer cells in my brain. I like him and I think he's up for the job. So, I took my UCSF scans to his office and made an attempt to make an appointment. Stymied by his admin, I decided to be that nightmare patient that shows up and demands an appointment. Okay, I've worked in healthcare and I understand that everyone's emergency is their own emergency and should be treated as such. However, in the ER, we sort you based on need. If you are having the big one, bleeding to death, or can't breathe (among a few other things), we put you on the top of the list. Well, it's different in clinical medicine. First, they get your referral. Then, they request the scans/bloodwork/doctor's notes so that the physician treating you can "sort" you within his/her practice. Rightly, or wrongly, I felt like a bunch of cancer cells in my brain moved me up the list. Brain Mets people. What if it was your brain?
So, I skipped a couple steps. UCSF overnighted my info to the admin staff (per my request) so all of that was en route. Then, I showed up. I hand-delivered the scans I knew the doctor would need to make a determination to the admin, and she assured me the doctor would see me Tuesday or Wednesday of the following week (7-8 days away).
Let's do some math. You have >100 lesions in your brain trying to kill you by growing. Let's just say they all grow half as big. Your situation has now worsened 1 ½ times. The key to killing cancer is killing small, weak collections of cells that have no foothold, so if you think I am going to let a few pre-pubescent cancer cells mature in my brain over 7-8 days, forget it.
After the admin described the process of getting an appointment (she didn't know I worked in healthcare obviously), I asked her how many Brain Metastasis patients the office was currently treating. She admitted two. I decided they had room. I let her know that I was recently diagnosed by UCSF with over 100 lesions on my brain and throughout my body, positively confirmed by biopsy as a return of my formerly Stage III, now Stage IV metastatic breast cancer, and that I would like to begin treatment as soon as possible. I was polite. I was direct, but not rude, clearly implying that I was not willing to wait a week. She called the next day. "Doctor would like to see you tomorrow."
Okay, so we've established that Dr. Goldsmith is a can-do guy. He's a go-getter. He's a get 'er done, son kinda doc. The team scheduled my "simulation" (A.K.A. Hannibal Lecter mask-fitting) following my appointment. AND he offered to begin treatment that afternoon. Yes, Yes, and yes please.
We had already done the math, the research, the side effect profile, and consulted three certified radiation oncologists.... Whole Brain Radiation Treatment (WBRT) is the next step for people with my profile. Additionally, I am unable to begin systemic therapy until after my radiation treatment concludes because the radiation effects the drugs I will be treated with. The sooner I get this done, the sooner I can bring on the next cancer-killing machine.
I started radiation treatment that day.
So far, I can still tie my shoes and do higher math. I am told my short-term memory will suffer, but it's already affected, so that's nothing new. The loss of my hair is inevitable which is the saddest part for me. It took me three years to get it this length. I love having hair. I know, it's so superficial and childish, but losing my hair is a rough side effect. I've always had long thick hair. It's one part of me that's unique to me and with two daughters in the house with long gorgeous hair, the contrast is glaring. Scarves are not my thing and baseball caps don't fit without some hair. Beanies are sweet and look good in winter but not when it's 90 degrees outside. This is one of those "suck-it-up" parts of cancer. Want hair? or 5-10 more years? I'll take the years. Some good news is I will only lose the hair in the field of treatment. Therefore, I get to keep my eyelashes and possibly, my eyebrows. This is kind of a huge win.
UCSF continues to run tests on bloodwork and tissue samples. One of the therapies suggested is a cutting edge gene therapy where they sequence my DNA and the DNA of cancer cells to determine where in the genetic code things are going awry. That's some cool science and where your hard-earned cancer dollars are being spent. There are a number of hormone adjuvant treatments that can be effective (before chemo) and depending on the tissue profile, I might qualify for ALL of them! Yay! There are also multiple clinical trials and experimental therapies available to Stage IV patients. I leveled up so I get to move up the qualifications list. Radiation treatment will end September 15th. I'll be pretty sick and fairly knackered so don't panic if you don't hear from me. I will try to post updates here but I'm working on expanding my website too for short versions.
The hubs and the girls are doing best as can be expected. Marek is a pillar of greatness, making all of this up as he goes along. He keeps me in check, reminds me when memory fails, and keeps me from overestimating my abilities given my proclivities (a HUGE, thankless job).
As of right now, textbook prognosis is 3-5 years. If treatments are effective, it can be as long as 15 or 20. So don't write those long, tearful goodbyes just yet. I still have a few bucket list items to knock off, a few loved ones left to hug and a mountain of friends to visit. It's business as usual around here planning the next adventure, cleaning the kitchen and trying to remember where I left my keys. FYI, I will be playing the cancer card this round, so if I show up on your doorstep with two tickets to bungee -jumping in india, you are required to participate. Just sayin'. So increase that health insurance and get those passports ready! Love to all and thank you for reading.
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