I've been receiving a lot of great support via Facebook, email, texts, etc., and I love it. I love the random reach out: "Hey, haven't talked to you in months but just wanna check in and see how things are going'? It's so cool to me that out of nowhere I manage to streak across someone's mind with enough umph to generate a thought and maybe even a message via the internet. Life is busy and my age, experience and people and logins and passwords tend to pile up. How cool is that when you pop up in someone's head at random?
Trust me it's cool.
I won't dwell on my situation but a lot of people are either tentative to reach out, imagining me parked in front of the porcelain bus with goobers coming out my eyeballs or peacefully slumbering in bed like Rip Van Winkle waiting to wake up after the crisis of this cancer business. It's a pretty big continuum, you must admit. People handle personal challenges in different ways. Once the initial shock of diagnosis, worst case scenarios and treatment options wore off, it was back to life as usual. Well sort of, only with different goals. If you wonder what I'm going through, maybe this post will clear that up a bit.
First, I do a lot of virtual work. You know, Facebook, Email, Texting, Movies, Netflix.... Thank goodness for technology! I stalk all of my friends traveling to Paris or Park City or wherever. It conjures up memories of great times had in those places or it puts another destination on my future bucket list. I might even engage in some surly post-election debates just to see if I have the brain cells to stand on my own two feet. So far so good although given my situation, not to many people have accused me of being dense for fear of being cruel. By the way, thank you to all my smart friends for cutting me the slack. And that's my life. It's great. I am charged with nothing but surviving. It's pretty cushy actually.
Second, I manage the unpleasantries. These include daily bloody noses, of unknown etiology. They are minor but they are usually most prominent when I change into a clean white shirt. Then there is the peripheral neuropathy which is a nerve issue that causes the hands and feet to sort of "prickle." The hair loss is an easy one but the fingernails, toenails and cuticles are tough to manage. They don't fare well in a cytotoxic host and that also causes some maintenance issues. Luckily, my platelets remain within normal levels, so management of peeling skin and bleeding nasal passages is not life threatening. I also suffer cold intolerance which is not handy as we come into wintertime. I'm often dressed in multiple layers including fleece, down and furry hats. I am often mistaken for a homeless person or a Russian tourist.
My second least favorite side effect is the ever present mucositis. Cancer by definition is a group of rapidly dividing cells that grow out of control. The gastrointestinal tract is composed of rapidly dividing cells that the body is constantly producing. Chemotherapy attacks rapidly dividing cells (cancer and regular) and obliterates them, so the gastrointestinal tract is constantly turning over. Over time, this causes some rawness and difficulty, hence frequent nausea, vomiting, and discomfort. It's hard to swallow and digestion is a new experience that ends with more unpleasantness on the other side. I am happy to report that I still have not vomited from chemo thanks to the excellent treatment I am receiving, and the counseling the nurses provide. Most of this is centered on how to eat, when to eat and how to keep from slipping into the nightmare of a digestive system that shuts down completely. The metallic tastebuds don't help this process and there are days when food is downright repulsive. I have to coax my digestive tract to cooperate most of the time with a teasing of a cracker or a bowl of broth. I am thus far, successful (lucky is a better descriptive), but I fear that 9 more weeks will have increasing difficulties with eating.
My goals are to keep my white cells working, my platelets up, my neutrophils down and my liver enzymes strong and healthy (Milk Thistle tea anyone?) and WITHOUT Big Pharma's assistance. I do this through nutrition, drinking lots of water and avoiding anything that messes with my brain, my liver or my lungs. It tends to be a full-time job. I could take the easy road. I am prescribed a cornucopia of anti-nausea medications, pain medication, neuroprotective meds, steroids, anti-inflammatories and anything else I want, which includes the countless offers of Cannabinoids and their varying dosages and delivery systems. Yes, I have those too, and for now, they are for emergency use only.
Why?
Faith, but not the faith you think.
The human body is an amazing organism. It can adapt to the harshest of conditions. Right now, I am asking it to adapt to being poisoned on a weekly basis. On Toxic Tuesday, I get pre-meds (medications before the medications!) to reduce the potential sensitivity issues that the poison instigates. These include IV Steroids, Benadryl and Pepcid. It jacks me up and makes me restless. I call it my weekly Red Bull and Vodka. After that, I get the chemo poison. Every third week, I receive two more medications that attack my cancer cells directly via an antibody treatment. Side effects aren't awful but the fact that they are infusing more chemicals into my system means my body has to work overtime. If you consider that all of these drugs are killing cells, both my good ones and cancer's bad ones, there's a lot of bio-garbage swirling around my system. I'm sure you can understand why I really don't want to take any other chemicals with differing side effects, to manage the chemicals that are trying to poison me. My body can do this on its own as long as I treat it gently and maintain FAITH. This means no stimulating inflammation of any kind. Training is out. Exertion is out. Sugar is out.
Of all the effects, it is the fatigue that reminds me, daily, that I am in treatment. Some days, I can go a full two hours and others, I do not make it out of bed. I have tried dogged, stubbornness to push through these days and despite my efforts, I sink deeper into a hole of pseudo-paralysisand ultimately defeat. Fatigue is not "sleepy." It is not "tired." It is as if someone has placed the entire world on your shoulders, turned up the gravity and said, "do twenty jumping jacks." It is the equivalent of being 9 months pregnant, dehydrated, and climbing Everest at about 20,000 feet. It is crippling exhaustion that accumulates without recovery. 2 hours of overdoing it buys me a full extra day in bed. Napping doesn't help because it's not "tired" nor "sleepy." It is paralysis. It is a cruel penance for a regularly active person and a lesson in humility.
The world spins wildly outside of my bubble. My girls have their marching orders for school and soccer and voice lessons and photography and community service and Marek continues to work while shuttling kids in between conference calls. It's hard not to get sucked in. It's hard to say no while they all toil and scramble to meet their needs, and I have to remind myself that rest has value.
All of this works hard on my psychological outlook. While I work through the week to maintain nutrition and recover, the next treatment looms. Just when I cajole my body into recovering from the previous Tuesday's poisoning, it's time to go back and start over. Each week the climb gets a little harder. I have ten more chemotherapy treatments, so the count is on. Scans in March should tell my fortune for longevity. Most recent scans confirm at least another year if not three. I'm shooting for five and hoping for ten. For now, I'm just happy to get to Monday.
Monday, December 19, 2016
Wednesday, December 14, 2016
Wacky Wednesday
It's wacky Wednesday! The day after treatment is always a fairly good day because I'm still riding a steroid high (included in my pre-chemo cocktail of meds that I refer to as my "red bull and vodka."), so I have a little more energy and lot less misery. Today is the day to get things done because "Throttled Thursday" comes quick and I am rendered useless for a good three days.
I am back in the thick of it, and settling into a routine. I can expect that Thursday, Friday and Saturday are going to suck, and I can plan accordingly. Last week, I got the triple header which on top of chemo, included the two other drugs I will get indefinitely that are specific to my brand of cancer. They have fewer side effects but even so, I have a hard time recovering from all three. It's a good thing I partied in my 20's because all of this chemical mayhem doesn't seem as scary as it probably should. Another bad night at the bar, only this hangover lasts a few days.
We are settling in with the new news of a February finish line. The holidays will go quickly, January will start with a bang and before we know it, February will be here. 99% of this is showing up. I just have to show up and do the work. Marek has made Toxic Tuesday as pleasant as possible by signing up girlfriends to drive me to San Francisco and back. It never disappoints, and I can combine a little psychological therapy with my chemical stuff. It's a big win, because riding with friends gives me some time with them that I would not get otherwise and I don't dread Tuesday as much.
I won't lie. Even with the help on all fronts, we are tired. December's scans gave us GREAT news and a ton of hope, but up until then, the stress was fairly palpable. Too many what-ifs and worst-case scenarios. The news gives us a chance to plan just a little further down the road than we thought, and that has created a collective sigh of relief. However, I will not be duped into thinking that "I've got time." Both Marek and I have shared our fear about slipping into the regular status quo of life once chemotherapy ends. We have been working and saving for a retirement together that may never come, so finding a lifestyle that squeezes in those bucket list items while still keeping the lights on at home is challenging. I live in 3-5 year increments. I don't expect more than that and I want to get my money's worth (or at least my insurance company's money's worth), but you can't just drop everything and run to the other side of the planet without means.
After treatment, I anticipate being very capable to enjoy activities like hiking, climbing, kayaking, skiing etc. That won't always be the case. There may come a time when fighting cancer is all I can do, and that will limit quality of life significantly. Carpe Diem is a mantra for a person fighting terminal illness. You never know when you are going to have a full head of hair, a working digestive system and the energy to paddle around an island. It's easy to kid yourself that you are "going back" to who you were before treatment. Not so. You always move forward in a new paradigm. I got a lot of great mileage after my first round with this disease. Lots of great adventures and we took advantage of every moment. #LivelikeTori has grown out of this "say yes" to everything that comes at you, and make it happen because tomorrow is uncertain. With limited financial resources, that's tough to do on a regular basis. Right now, Marek is managing his full-time job, taking care of me, taking care of our kids, fixing anything that breaks, driving kids to soccer practice and voice lessons, managing medical bills and insurance claims, keeping the lights on at home, and trying to see what his life looks like 5 years from now. AND in a karmic act of cruelty, his best friend is fighting Colon Cancer. I think this is why adding three more cycles to my chemo regimen affected me so greatly. It's hard to watch those you love go through it on both ends.
I see good things ahead. I have a lot of high hopes that there is still a great deal of fun to be had and a life that I can enjoy. New precautions need to be taken. Not sure if I will get to go to the Amazon rainforest, or explore mountains in Krgystan because my doc thinks there are evil diseases I can catch in those places. I've already got an evil disease, so what's one more? It would be a shame though to waste all this hard chemo work on a stupid mosquito virus. My plea for Tahitian vacations continues but nobody likes me far away from big hospitals with smart doctors. We will need to be creative. Alaska to Tierra del Fuego will happen though. It's just a matter of timing.....
Until those days, we have work to do. Heads down, sticking to routines, staying healthy are all part of getting through stuff like this. The enormous amount of support coming our way makes doing the work much easier. Every day, I want to work for that happy ending for everyone, especially Marek.
There has been a little scuttlebutt about my upcoming birthday. This year, I turn 50. Five-O. Plans to go big have been tabled, primarily because I don't have the energy to remain standing for more than an hour or so. It's supposed to be a celebration and while it is, I have higher expectations than sitting in a corner watching my friends worry about me. I've worked hard for this birthday, and I fully intend to celebrate it rightly, not curled up wishing everyone would go home early. Not my style.
So, I will be celebrating my birthday next summer when it's warm and we can fit more people at our house. It'll be the "50.5" and a celebration of epic proportions. When my actual my birthday comes, I will light a little candle and enjoy some espresso creme brûlée to honor the achievement. It will not go unnoticed. I am surrounded by the love of my girls and my husband, which is the greatest gift ever; to spend another birthday with them. I am so grateful to all of my friends who have earned this birthday celebration almost more than I have with bringing food, contacting me daily and sending good wishes. They have given from their hearts through this and we all deserve a little good news and some killer birthday treats. So save June for the 50.5. Maybe I'll grow a few hairs for the occasion and cannonballs in the pool will be a much higher possibility.
and thank you for reading.
I am back in the thick of it, and settling into a routine. I can expect that Thursday, Friday and Saturday are going to suck, and I can plan accordingly. Last week, I got the triple header which on top of chemo, included the two other drugs I will get indefinitely that are specific to my brand of cancer. They have fewer side effects but even so, I have a hard time recovering from all three. It's a good thing I partied in my 20's because all of this chemical mayhem doesn't seem as scary as it probably should. Another bad night at the bar, only this hangover lasts a few days.
We are settling in with the new news of a February finish line. The holidays will go quickly, January will start with a bang and before we know it, February will be here. 99% of this is showing up. I just have to show up and do the work. Marek has made Toxic Tuesday as pleasant as possible by signing up girlfriends to drive me to San Francisco and back. It never disappoints, and I can combine a little psychological therapy with my chemical stuff. It's a big win, because riding with friends gives me some time with them that I would not get otherwise and I don't dread Tuesday as much.
I won't lie. Even with the help on all fronts, we are tired. December's scans gave us GREAT news and a ton of hope, but up until then, the stress was fairly palpable. Too many what-ifs and worst-case scenarios. The news gives us a chance to plan just a little further down the road than we thought, and that has created a collective sigh of relief. However, I will not be duped into thinking that "I've got time." Both Marek and I have shared our fear about slipping into the regular status quo of life once chemotherapy ends. We have been working and saving for a retirement together that may never come, so finding a lifestyle that squeezes in those bucket list items while still keeping the lights on at home is challenging. I live in 3-5 year increments. I don't expect more than that and I want to get my money's worth (or at least my insurance company's money's worth), but you can't just drop everything and run to the other side of the planet without means.
After treatment, I anticipate being very capable to enjoy activities like hiking, climbing, kayaking, skiing etc. That won't always be the case. There may come a time when fighting cancer is all I can do, and that will limit quality of life significantly. Carpe Diem is a mantra for a person fighting terminal illness. You never know when you are going to have a full head of hair, a working digestive system and the energy to paddle around an island. It's easy to kid yourself that you are "going back" to who you were before treatment. Not so. You always move forward in a new paradigm. I got a lot of great mileage after my first round with this disease. Lots of great adventures and we took advantage of every moment. #LivelikeTori has grown out of this "say yes" to everything that comes at you, and make it happen because tomorrow is uncertain. With limited financial resources, that's tough to do on a regular basis. Right now, Marek is managing his full-time job, taking care of me, taking care of our kids, fixing anything that breaks, driving kids to soccer practice and voice lessons, managing medical bills and insurance claims, keeping the lights on at home, and trying to see what his life looks like 5 years from now. AND in a karmic act of cruelty, his best friend is fighting Colon Cancer. I think this is why adding three more cycles to my chemo regimen affected me so greatly. It's hard to watch those you love go through it on both ends.
I see good things ahead. I have a lot of high hopes that there is still a great deal of fun to be had and a life that I can enjoy. New precautions need to be taken. Not sure if I will get to go to the Amazon rainforest, or explore mountains in Krgystan because my doc thinks there are evil diseases I can catch in those places. I've already got an evil disease, so what's one more? It would be a shame though to waste all this hard chemo work on a stupid mosquito virus. My plea for Tahitian vacations continues but nobody likes me far away from big hospitals with smart doctors. We will need to be creative. Alaska to Tierra del Fuego will happen though. It's just a matter of timing.....
Until those days, we have work to do. Heads down, sticking to routines, staying healthy are all part of getting through stuff like this. The enormous amount of support coming our way makes doing the work much easier. Every day, I want to work for that happy ending for everyone, especially Marek.
There has been a little scuttlebutt about my upcoming birthday. This year, I turn 50. Five-O. Plans to go big have been tabled, primarily because I don't have the energy to remain standing for more than an hour or so. It's supposed to be a celebration and while it is, I have higher expectations than sitting in a corner watching my friends worry about me. I've worked hard for this birthday, and I fully intend to celebrate it rightly, not curled up wishing everyone would go home early. Not my style.
So, I will be celebrating my birthday next summer when it's warm and we can fit more people at our house. It'll be the "50.5" and a celebration of epic proportions. When my actual my birthday comes, I will light a little candle and enjoy some espresso creme brûlée to honor the achievement. It will not go unnoticed. I am surrounded by the love of my girls and my husband, which is the greatest gift ever; to spend another birthday with them. I am so grateful to all of my friends who have earned this birthday celebration almost more than I have with bringing food, contacting me daily and sending good wishes. They have given from their hearts through this and we all deserve a little good news and some killer birthday treats. So save June for the 50.5. Maybe I'll grow a few hairs for the occasion and cannonballs in the pool will be a much higher possibility.
and thank you for reading.
Tuesday, December 6, 2016
A New Paradigm
I wish I had perfect news. I wish I could give everyone, working hard for us, the kind of news that everyone deserves. I want everyone to have a happy ending. Right before Christmas, that would be more than convenient. I had really high hopes for a miracle. I knew it would require one. Stage IV Breast Cancer is a chronic disease that doesn't just "go away." Given the fact I am stubborn, can take a pretty good hit, and don't take no for an answer, why would I expect my own cells to be any different?
There is good news to report. I am responding very well to chemo and radiation treatment. The radiation I received in September is still hatving an effect. Most of the lesions in my brain are gone and the ones that remain are much smaller, reduced by half as a matter of fact. My physician explains that sometimes the cancer cells just die and leave behind a non-active mass that remains. Normal organic tissue behaves similarly by leaving a scar. Cancer cells die a little differently because by their own definition, the genetic component that mutates is dysfunctional. They literally refuse to die and grow exponentially into tumors and masses in inconvenient places. So when we actually kill them, It makes sense that instead of disappearing, they just shrivel up and die. They're just bitter, because they lost, but I get to keep a portion of them as a souvenir.
The lymphadenopathy in my abdomen is gone. The areas surrounding my aorta and my kidneys are clear. There are still some nodes that are active but the overall picture is good. The disease is responding and will continue to respond as I move through the phases of treatment.
So why am I not jumping for joy and posting selfies on Facebook?
It's Cancer still there. I still have this. Portions of my chest have active lymph nodes and my lungs are "fuzzy," which remain unchanged since my last scan. My Doc's not even convinced that what's going on in my lungs is actually cancer but thankfully, does not want to biopsy every little thing he finds in my body (because that might actually kill me). The presumption is that it is a collateral relation to cancer and is being treated that way. It's not worsening but it's also not changing. It might just be something I have to live with. My doctor is optimistic. He's happy with the results. He's so happy that he decided to add three more cycles of chemo.
Three. More. Cycles.
That's 9 more weeks of hell.
"But you're tolerating it so well," He adds.
Technically, this is correct. I am far more capable than most of his other patients who can't keep weight on, who suffer from severe neuropathy, who can't eat, can't drink, can barely function. Yes, I am tolerating "well," but my standards are far higher. I am spoiled. I want to THRIVE. I want to relieve Marek of all the extra work he's having to do for us. I want the girls to have an actual mother with some credibility and doesn't forget what she told them 5 minutes prior. I don't want to lay in bed in misery every Thursday. However, he is right. I am tolerating "well," which means I have not reached rock bottom. I am still not at the point of rescue. I can still take more poison that will eradicate what currently remains.
And this is also the new paradigm. There is no cure, only treatment, which means that it will never go away. It will never truly be gone. It will always be hiding. I learned that from my friend Spencer who fought Multiple Myeloma for 8+ years. He was always in and out of chemo, in and out of thriving and dying. I know this is probably my reality now and I haven't figured out how to live my life accordingly. We've been in crisis mode since diagnosis and I've had my nose to the grindstone since.
Three. More. Cycles
Marek and I have been trying to plan a "post-chemo" vacation. We both need a break from all this chemo fun, and anticipated we would be done a little sooner. As you know, we roll a little differently. Generally, we go to remote locations and we go for extended periods in third world communities. Now, we have guidelines. My doctor was mortified when I told him we wanted to travel around the Philippines or the South Pacific.
"There's no Tertiary Care Centers there! Things happen. What if you have an emergency?"
I don't think he travels much, which is why he is my oncologist and not my travel agent. But he does know that the likelihood of pneumonia, or blood dyscrasia, or infection of any kind will level me. Just for giggles, I asked him what could possibly happen. He listed things like Renal Failure, sepsis, Gall Bladder problems, Cancer.... Doomsday. What does he know? I choose denial. I have Cancer. None of that other stuff applies. (Which is total BS. It applies even more. Denial)
Three. More. Cycles. 9. More. Weeks.
I am psychologically wrecked right now. However, I also know that my doctor is right. 3 more cycles will not only increase the efficacy but will also increase my life on this planet. 3 more cycles means Christmas on chemo and an endpoint of February 21st. 3 more cycles means 2 ½ more months of side effects. It also means life... after 3 more cycles. My fear is I will be coaxed into 3 more cycles forever and die bald, sick, grumpy, and unpleasant. Living life far outweighs anybody else's version of survival. I'm not going to win any medals simply surviving. Quality of living and surviving must be mutually aligned. 3 more cycles it is because my doc gets it. He knows I refuse to fade away. I think he knows my limits and since I'm "tolerating well," he's going to push me.
My scans are good. I am beating it back. Slowly. I just have to get through 3 more cycles. I'm afraid I'm going to need a little help from my friends on this one. Nothing new. Just everything you've been doing. I promise not to quit if you don't. Thank you in advance.
There is good news to report. I am responding very well to chemo and radiation treatment. The radiation I received in September is still hatving an effect. Most of the lesions in my brain are gone and the ones that remain are much smaller, reduced by half as a matter of fact. My physician explains that sometimes the cancer cells just die and leave behind a non-active mass that remains. Normal organic tissue behaves similarly by leaving a scar. Cancer cells die a little differently because by their own definition, the genetic component that mutates is dysfunctional. They literally refuse to die and grow exponentially into tumors and masses in inconvenient places. So when we actually kill them, It makes sense that instead of disappearing, they just shrivel up and die. They're just bitter, because they lost, but I get to keep a portion of them as a souvenir.
The lymphadenopathy in my abdomen is gone. The areas surrounding my aorta and my kidneys are clear. There are still some nodes that are active but the overall picture is good. The disease is responding and will continue to respond as I move through the phases of treatment.
So why am I not jumping for joy and posting selfies on Facebook?
It's Cancer still there. I still have this. Portions of my chest have active lymph nodes and my lungs are "fuzzy," which remain unchanged since my last scan. My Doc's not even convinced that what's going on in my lungs is actually cancer but thankfully, does not want to biopsy every little thing he finds in my body (because that might actually kill me). The presumption is that it is a collateral relation to cancer and is being treated that way. It's not worsening but it's also not changing. It might just be something I have to live with. My doctor is optimistic. He's happy with the results. He's so happy that he decided to add three more cycles of chemo.
Three. More. Cycles.
That's 9 more weeks of hell.
"But you're tolerating it so well," He adds.
Technically, this is correct. I am far more capable than most of his other patients who can't keep weight on, who suffer from severe neuropathy, who can't eat, can't drink, can barely function. Yes, I am tolerating "well," but my standards are far higher. I am spoiled. I want to THRIVE. I want to relieve Marek of all the extra work he's having to do for us. I want the girls to have an actual mother with some credibility and doesn't forget what she told them 5 minutes prior. I don't want to lay in bed in misery every Thursday. However, he is right. I am tolerating "well," which means I have not reached rock bottom. I am still not at the point of rescue. I can still take more poison that will eradicate what currently remains.
And this is also the new paradigm. There is no cure, only treatment, which means that it will never go away. It will never truly be gone. It will always be hiding. I learned that from my friend Spencer who fought Multiple Myeloma for 8+ years. He was always in and out of chemo, in and out of thriving and dying. I know this is probably my reality now and I haven't figured out how to live my life accordingly. We've been in crisis mode since diagnosis and I've had my nose to the grindstone since.
Three. More. Cycles
Marek and I have been trying to plan a "post-chemo" vacation. We both need a break from all this chemo fun, and anticipated we would be done a little sooner. As you know, we roll a little differently. Generally, we go to remote locations and we go for extended periods in third world communities. Now, we have guidelines. My doctor was mortified when I told him we wanted to travel around the Philippines or the South Pacific.
"There's no Tertiary Care Centers there! Things happen. What if you have an emergency?"
I don't think he travels much, which is why he is my oncologist and not my travel agent. But he does know that the likelihood of pneumonia, or blood dyscrasia, or infection of any kind will level me. Just for giggles, I asked him what could possibly happen. He listed things like Renal Failure, sepsis, Gall Bladder problems, Cancer.... Doomsday. What does he know? I choose denial. I have Cancer. None of that other stuff applies. (Which is total BS. It applies even more. Denial)
Three. More. Cycles. 9. More. Weeks.
I am psychologically wrecked right now. However, I also know that my doctor is right. 3 more cycles will not only increase the efficacy but will also increase my life on this planet. 3 more cycles means Christmas on chemo and an endpoint of February 21st. 3 more cycles means 2 ½ more months of side effects. It also means life... after 3 more cycles. My fear is I will be coaxed into 3 more cycles forever and die bald, sick, grumpy, and unpleasant. Living life far outweighs anybody else's version of survival. I'm not going to win any medals simply surviving. Quality of living and surviving must be mutually aligned. 3 more cycles it is because my doc gets it. He knows I refuse to fade away. I think he knows my limits and since I'm "tolerating well," he's going to push me.
My scans are good. I am beating it back. Slowly. I just have to get through 3 more cycles. I'm afraid I'm going to need a little help from my friends on this one. Nothing new. Just everything you've been doing. I promise not to quit if you don't. Thank you in advance.
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