First day of chemo. My day started out great. The pain in my shoulder was minimal, my head was clear and I got to spend the day with my dashingly, handsome husband. I had a big day ahead full of blood draws, appointments, surgery and treatment. It's all good. I was excited to get day one under my belt. My Doc reminded me that the side effects of the chemo might not be as severe because initially (5 years ago), I had another chemo mix that was super toxic and put me in the backseat. This time, I don't have to have those nasty drugs and the side effect profile of the chemo I get now is not so bad. This comes to me as great news. I will still experience debilitating fatigue and hair loss but somehow this seems more tolerable.
So I nailed the blood draw, rocked the doc appointment, and headed to interventional radiology where they would perform surgery to place a port in my chest for infusion. I'm a big fan of these guys because they were able to access my supraclavicular node for biopsy, which was an impossible task (kinda like trying to hit a snow pea in a haystack with a javelin), and they rocked it. Because of interventional radiology, pathology was able to profile my cancer so that the corresponding treatments would be effectively chosen and I wouldn't have to suffer any unnecessary "stabs in the dark."
Nurse Daphne brought me back to the surgical suite, and they set me up for surgery where they place a port with a catheter that goes into my subclavian vein and the port part goes nearby just under my skin. When I get infusions, they access this port with a tiny needle that just pokes my skin. Using veins collapses them, and if chemo leaks, it can grossly destroy an arm in a matter of minutes. Ports are very handy and also prevent infection which is also a concern for cancer patients. The interventional radiologist who performed my procedure was nothing short of awesome. I felt NOTHING. All local anesthetic to numb the area, and I was wide awake. Daphne had pain meds for me, but I really didn't need them. My port was placed perfectly and they even tolerated my incessant chatty, banter. I'm a motor-mouth. Sue me. Daphne hooked me up with some Fentanyl to manage my anticipated pain or to shut me up. Either way, I was feeling pretty groovy the whole time. Port placed. Check.
Marek and I had an awesome San Francisco lunch. I was still significantly stoned from the Fentanyl so he was looking more handsome than usual. We geared up for chemo. I anticipated that I would feel pretty awful, nauseated, and not great. It's tough to walk in to a place where they infuse poison that makes you feel subhuman. Chemo takes you to the edge of the abyss and makes you look into the void. It takes a great deal of courage to pull yourself away from that abyss. Falling into it seems so much easier than rallying every week for yet another hardcore poisoning session. This is where everyone cheering for you pulls you back from that edge. They give you every reason to come back by wearing bracelets, buying T-shirts and flying planes from Alaska. Those are the people that inspire you to earn your life, to not give up, and to reach for humanity. Not only do they give you hope, but they inspire a reason to trudge on, to not give in to the abyss and to believe that blue skies are just ahead.
Infusion didn't go as planned. My nurse, Evelyn, from Ghana, Africa was a gem. She was so good, so professional and so culturally African in the sense that she was warm, and kind with a hearty laugh and a loving demeanor. She is the nurse you want at your bedside when things go south. And things went south.
My shoulder had been bothering me for weeks. It's an old rafting injury unrelated to cancer but because of my cancer, it refused to heal and get better. Cancer delays healing and with brain radiation, my shoulder was stuck in the limbo of inflammation. I brought a ball to roll along my muscles to help with the discomfort, but as my infusion began, my pain worsened. The Fentanyl from my port placement procedure had worn off and I was starting to feel a great amount of discomfort front and back. Marek tried to massage the stiffness and the tension out of my shoulder to no avail. After my first two infusions, my pain was off the chart. I couldn't stand it. Evelyn tried heat packs, tylenol, anything she could on a standing order, but nothing was helping. As it worsened, I felt myself slipping. How am I going to get through this? No way was I going to wait another week for treatment. I needed to get started now because my CT from yesterday showed that the cancer is growing. I needed to get that chemo on board to start letting cancer know that it is not welcome here. While Marek massaged, Evelyn manned the phone. She got doctor's orders for opiates by mouth and by IV. None of it worked. Fortunately, the chemo was infusing and it would be an hour more to gut through the nerve pain shooting through my shoulder and now down my arm, but I was in distress and coping mechanisms were fading. My doctor showed up. He watched and while Evelyn and Marek tried every other intervention, with no success. I was suffering and it was awful. Finally, My Doc said, "I think you need to go to the ER."
Okay, for all of you non-ER nurses, let me just say that unless I am dying, really dying, there is no way I go to the ER. The ER is for EMERGENCIES. The ER is for people who are in major distress. The ER is NOT for hangnails and the common cold. Yet everybody seems to think that this is a great idea since insurance companies can't deny you medical treatment of your perceived "emergency." ER's across the country fill up with low acuity patients who have nowhere to get treatment. Doctors send patients to the ER because they need a higher level of care, but patients still end up waiting two, three, even five hours waiting to be seen. It is a crisis and good hard-working ER personnel are getting hammered by non-emergent, "emergencies." I was in pain, but I had an airway, a stable heart rate and a 2-hour drive home. I thought I could gut it out because at some point, I figured I was going to pass out from the pain anyway. Vital functions were still working. I saw no reason to bring UCSF's ER to a grinding halt. However, the high-powered opiates that Evelyn had managed to appropriate had no effect. I was in distress and the look on both my doctor's and my husband's faces told the story. While Evelyn and I tried to think our way out of it, nothing was working. Everyone was out of ideas. I had opiates on board so my solution-seeking processes were clearly impaired. My pain was considered "intractable."Intractable pain gets you an admission and no way did I want to be admitted to the hospital. But intractable pain also makes you crazy, so reluctantly, I agreed to go to the ER.
I anticipated a small level of hell. San Francisco on a Tuesday night. Thankfully, no full moon, but the ER was full. We waited, I cried, silently, because despite my pain, I knew there were far sicker people here than me. I didn't belong here. I just needed something that the infusion center didn't have access to: a pharmaceutical cornucopia of pain meds and a guy nearby who could intubate me in case they went to far.
Dr. Rose was cute. He was kind, receptive and thorough. He ordered more opioids. I saw no sense in this whatsoever, but figured he knew what he was doing. After three major opiate meds that included Percocet, Norco and Morphine, I was still very awake, still very much in pain and wishing I had not come to the ER. Dr. Rose came back and offered Dilaudid ( another high-powered opiate) at which point, I made a simple suggestion.
"Dr. Rose, my pain is nerve pain, shooting down my arm and paralyzing my shoulder. What do you think about Neurontin?" (Neurontin is often used in nerve-related pain syndromes to halt seizures and treat neuropathies.)
In my experience, holier than thou docs would have scoffed at my suggestion, but not cute Dr. Rose. He considered it. "Let's give it a try."
With Dilaudid ordered as back up, along with an anti-anxiety med that would have snowed me through Sunday, They gave me Neurontin. Within the hour, my pain subsided. It stopped shooting down my arm, my shoulder stopped trying to kill me and my outlook greatly improved. Once my pain was relieved, all those opioids took over and I became a red, hot mess of slurring, drunkenness. My dashingly, handsome husband let out a sigh of relief as I insinuated it was time to make a move.
"Time to take me home honey."
I was so relieved to not be admitted. I was so relieved that my pain had a treatment. I was so relieved to go home and sleep in my own bed. It was an epic ordeal. Poor Marek had to witness my suffering for 9 grueling hours then get in a car and drive my drunken self home at midnight (the easy part). He was unbelievably amazing. While he had previous experience driving me home drunk, slurry, and giggling incessantly, he didn't have experience watching me suffer. This added a whole new level of complexity to this journey because he witnessed my mortality and how fast things go badly. It left a mark, a mark of terror that it is very possible that I might die from something stupid, and he was helpless to stop it. I was so so sorry, to bring this painful reality to our perfect relationship. "In sickness and in health" doesn't exactly prepare you for this.
You never know what crazy, hellish adventure Cancer is going to serve up. I never would have anticipated this little episode that had mostly nothing to do with my cancer other than delaying the healing of a musculoskeletal injury and wreaking havoc on my nervous system. I swear the universe threw that in there to increase the level of challenge and difficulty because I practically sailed through the first round. My doctor saw me in distress. Good, hard-working nurses, busted down to help me. Marek watched. Tough round this early in the game, but we did it. We got through. Good people helped us with our dog and our kids and we all reunited the next day to tell the story. Cancer is an adventure. It's an epic journey of unpredicted events. You can prepare all you want but no matter what, cancer finds a way to challenge you at the most unexpected times. Last night, I fought and won. Cancer 1 Tori 1. Battles are part of the deal. Win some. Lose some. But no matter what the score, I fully intend to win this fight. I have an unwavering, committed army behind me in this. If my own cells wanna try and kill me, they're gonna have to accept that they are mutants and the rest of me is slightly more badass than they are. I came to fight. This is not over, and I am geared up for a long, cold war.
Thursday, October 6, 2016
Wednesday, October 5, 2016
The Gift
These are dark days. The last two weeks have been somewhat challenging in strange ways. Upon completion of brain radiation therapy, my physician prescribed steroids to help me with symptoms of brain swelling which include nausea, headaches, loss of appetite, mild combativeness, and debilitating fatigue. Unfortunately, the side effects of the steroids are almost worse. They jack me up, take away the nausea and diminish the headaches and send me into a state of mania. The good news is my house is clean, my kids are in line, and there are plenty of hours in the day. The bad news is, it sucks. After day one, I said, "screw it." I decided to forego the steroid storm. I was immediately engulfed with nausea, headaches, fatigue and a pain in my right shoulder due to a previous kayaking injury that refuses to heal. I'm tired, REALLY tired, and it's tough to overcome the urge to just stay in bed all day. However, to me, that's kinda like quitting, I REFUSE to quit. Sure, there are days when 14 hours of sleep are welcomed and acknowledged, but there are also lots of amazing friends coming to visit, warm sunny days, a very inviting swimming pool, and kids who need to learn stuff.This is probably the worst possible timing to learn how to homeschool your kids, but hey, I never liked starting at the bottom anyway. Radiation therapy has a side effect of short-term memory loss, so I have to step up my game. My girls have been super rockstars, committing to their studies and tolerating their mom who likes to write impossible quizzes. However, the preparation and execution of providing a learning environment, weeding through curriculum, and learning to teach has been a great distraction from feeling crappy. As we trudge our way through pacing curriculum and resisting the urge to bake during school hours, I can't help but wonder if this a good idea or a bad one. Homeschooling was going to be challenging enough all on it's own, but with a cancer diagnosis, it's a whole new way to level up. For me, It works. I spend the weekends coming up with the plan, spending extra time revising and trying to align one daughter's studies with the other to make it easier to teach. It has turned out to be a great way to feel useful as being a cancer patient can sometimes make you feel like a burden. It also distracts from the nausea, requires little physical effort while fatigue takes its toll, and keeps the grumpiness at bay. But it's not just about me, which is why we have certified teacher to monitor our progress and make sure that all three of us are achieving our goals and working towards a High School Diploma.
The side effects remain but I can handle those. The most irritating thing is my left eye. One of the cancer lesions is located just behind my left retina. It leaks fluid which distorts my vision tremendously. My right eye does overtime to compensate and the end result is a bad case of vertigo and an inability to find anything, specifically the glasses I need to find stuff. Combined with the short-term memory loss, this has become a serious problem. If I put something down somewhere such as my phone, I spend the good part of the day "looking" (groping) around for my glasses and ultimately my phone which wastes precious time I could be spending doing something far more satisfying. Meh. It is what it is. I just have to work the problem and find a solution such as leashes for both my phone and my glasses. However, despite finding this solution, I am unable to drive to the store to obtain said items because, well, I'm blind. Ish. Radiation therapy should have killed that stupid lesion in my eye, but it is taking it's own sweet time. As I journey into Phase II of treatment, I am REALLY looking forward to literally watching this lesion shrivel up and die. Until then, I have littered my house, my purse and my nightstand with high-powered reading glasses.
Despite having the proverbial equivalent of sticking my head in a microwave, I remain capable. I'm kinda psyched about that. I can still form a complete sentence and fire off a witty one-liner or two. Sometimes I get a blank stare but I chalk that up to evolutionary superiority rather than brain mets. Some people just don't get me. That's okay. They usually try not to say much because I have brain mets and it is presumed that I will die soon anyway, so nobody gets in my grill. It's sort of a cancer perk, and sometimes I use it to amuse myself .
Today is exciting because it signifies the next phase. It also scares the hell out of me. Chemo is no picnic. I've been there, done that, got the T-shirt and I know almost EXACTLY how much it's going to suck. That said, nobody likes a negative Nancy so I gotta figure out a way to make this fun. THIS is the true challenge of chemotherapy, and this is the reality of the rest of my life. I have come to learn there is a gift in every adverse circumstance. For real. To survive such adversity, one MUST look for the gift. It is unimportant that you find it. It's the looking for it that changes the game. Originally, chemo was not part of the plan. Chemo does not cross the blood brain barrier so it wasn't expected that chemo would be part of the plan. However, because the metastasis has spread throughout my chest, pelvis and abdomen, chemo is now.... the plan. Cancer 1 Tori 0. Despite this, I happen to know that chemo will obliterate the nodes positive in my body. As a bonus, cancer tends to disrupt the blood brain barrier on its own so SOME of that nasty stuff might leak in to those brain lesions and put the last nail in their certain coffin. The other meds I'll be getting are specific to my HER-2 positive cancer and a death sentence to any cancer remaining. This is the gift in all of this. The disintegration of my cancer resulting from said chemo and said adjuvant treatments means all of these annoying symptoms get better. My eye goes back to being my eye, the nausea resolves, the headaches diminish and I return to a new normal baseline. Utopia.
As a nurse, I know that Utopia is temporary and not always how all of this goes down. There are glitches, uncertainties and just plain bad luck. It is possible that I won't respond and if I do, it is also possible I will stop responding at some point. My Oncologist has a litany of "back up" plans. He is preparing for Phase III before Phase II even starts. He is miles ahead on what could happen and he is not to proud to collaborate with sources such as M.D. Anderson Cancer center (Texas) and Memorial Sloan Kettering Cancer Center (New York). He is my ace in the hole and my life is in his hands. He works hard for me, which translates to helping my husband and kids and anyone else that might care for me, so it's my job to make is his job as easy as possible.
Today, I have a very big day. Blood draw at 8am, Doc visit at 9:15am, surgery for access Port placement at 10:30, then chemo and adjuvant treatment at 2:30 which lasts 5 hours. It's a doozy, and it weighs heavy on my mind. Where is that damn gift? Why is it so hard to find? Often, it's a matter of breaking the problem up into smaller parts. I just breathe and take it as it comes. Much like war, fighting cancer has no certainties, no predictability. It fights back in ways unanticipated. I am desperately trying to outwit my opponent but it does not make it easy, and because cancer is composed of my own broken cells, I am proud to say that it fights like a beast. I am my own worst enemy. But I fight like a beast too, and I have goals. The plan for now is to do chemo and adjuvant therapy. I will receive 5 hour infusions every week in San Francisco indefinitely until I beat the beast back. Looking forward to THAT news with great anticipation. If anyone out there knows how I can get my own parking spot near 1600 Divisadero, that would be a tremendous gift. Parking is a bear.
Until then, I have enough to keep me busy, and ultimately my husband running. With a new Stage IV diagnosis, I am pulling out my Cancer Card and going shopping so if any of you want to offer up something amazing, I am in. You won't believe what a bald head can do in a pinch. Nobody likes to say no to a cancer patient. And if they do? Well, they have bigger problems than me, and probably deserve them because they are just plain mean. They don't see the gift. Ever. That's very sad but also much bigger than me and I've got my own fish to fry.
Right now, I feel very small. The mountain I have to scale seems enormous. Fortunately, I've climbed mountains before and I have stood on top. The journey of a thousand miles begins with one small step so that is where I must start, at the bottom, with one small step and bunch of really great people cheering for me. I will not quit which will be very exasperating to many because I will keep bushwhacking, throwing rocks, shoveling snow, and taking yet another step. I will NOT be stopped.
Thanks for reading. As you can see, writing about my journey is a pressure valve release. It's stream of consciousness, poorly organized, and often just too much, but it releases some of the negative energy and is a gentle reminder of where I've been and where I'm going (I read them weeks later). More stories to come.
"Hangin' on the promises of the songs of yesterday. I've made up my mind. I ain't wasting' no more time. Here I go again...." Whitesnake c. 1980
The side effects remain but I can handle those. The most irritating thing is my left eye. One of the cancer lesions is located just behind my left retina. It leaks fluid which distorts my vision tremendously. My right eye does overtime to compensate and the end result is a bad case of vertigo and an inability to find anything, specifically the glasses I need to find stuff. Combined with the short-term memory loss, this has become a serious problem. If I put something down somewhere such as my phone, I spend the good part of the day "looking" (groping) around for my glasses and ultimately my phone which wastes precious time I could be spending doing something far more satisfying. Meh. It is what it is. I just have to work the problem and find a solution such as leashes for both my phone and my glasses. However, despite finding this solution, I am unable to drive to the store to obtain said items because, well, I'm blind. Ish. Radiation therapy should have killed that stupid lesion in my eye, but it is taking it's own sweet time. As I journey into Phase II of treatment, I am REALLY looking forward to literally watching this lesion shrivel up and die. Until then, I have littered my house, my purse and my nightstand with high-powered reading glasses.
Despite having the proverbial equivalent of sticking my head in a microwave, I remain capable. I'm kinda psyched about that. I can still form a complete sentence and fire off a witty one-liner or two. Sometimes I get a blank stare but I chalk that up to evolutionary superiority rather than brain mets. Some people just don't get me. That's okay. They usually try not to say much because I have brain mets and it is presumed that I will die soon anyway, so nobody gets in my grill. It's sort of a cancer perk, and sometimes I use it to amuse myself .
Today is exciting because it signifies the next phase. It also scares the hell out of me. Chemo is no picnic. I've been there, done that, got the T-shirt and I know almost EXACTLY how much it's going to suck. That said, nobody likes a negative Nancy so I gotta figure out a way to make this fun. THIS is the true challenge of chemotherapy, and this is the reality of the rest of my life. I have come to learn there is a gift in every adverse circumstance. For real. To survive such adversity, one MUST look for the gift. It is unimportant that you find it. It's the looking for it that changes the game. Originally, chemo was not part of the plan. Chemo does not cross the blood brain barrier so it wasn't expected that chemo would be part of the plan. However, because the metastasis has spread throughout my chest, pelvis and abdomen, chemo is now.... the plan. Cancer 1 Tori 0. Despite this, I happen to know that chemo will obliterate the nodes positive in my body. As a bonus, cancer tends to disrupt the blood brain barrier on its own so SOME of that nasty stuff might leak in to those brain lesions and put the last nail in their certain coffin. The other meds I'll be getting are specific to my HER-2 positive cancer and a death sentence to any cancer remaining. This is the gift in all of this. The disintegration of my cancer resulting from said chemo and said adjuvant treatments means all of these annoying symptoms get better. My eye goes back to being my eye, the nausea resolves, the headaches diminish and I return to a new normal baseline. Utopia.
As a nurse, I know that Utopia is temporary and not always how all of this goes down. There are glitches, uncertainties and just plain bad luck. It is possible that I won't respond and if I do, it is also possible I will stop responding at some point. My Oncologist has a litany of "back up" plans. He is preparing for Phase III before Phase II even starts. He is miles ahead on what could happen and he is not to proud to collaborate with sources such as M.D. Anderson Cancer center (Texas) and Memorial Sloan Kettering Cancer Center (New York). He is my ace in the hole and my life is in his hands. He works hard for me, which translates to helping my husband and kids and anyone else that might care for me, so it's my job to make is his job as easy as possible.
Today, I have a very big day. Blood draw at 8am, Doc visit at 9:15am, surgery for access Port placement at 10:30, then chemo and adjuvant treatment at 2:30 which lasts 5 hours. It's a doozy, and it weighs heavy on my mind. Where is that damn gift? Why is it so hard to find? Often, it's a matter of breaking the problem up into smaller parts. I just breathe and take it as it comes. Much like war, fighting cancer has no certainties, no predictability. It fights back in ways unanticipated. I am desperately trying to outwit my opponent but it does not make it easy, and because cancer is composed of my own broken cells, I am proud to say that it fights like a beast. I am my own worst enemy. But I fight like a beast too, and I have goals. The plan for now is to do chemo and adjuvant therapy. I will receive 5 hour infusions every week in San Francisco indefinitely until I beat the beast back. Looking forward to THAT news with great anticipation. If anyone out there knows how I can get my own parking spot near 1600 Divisadero, that would be a tremendous gift. Parking is a bear.
Until then, I have enough to keep me busy, and ultimately my husband running. With a new Stage IV diagnosis, I am pulling out my Cancer Card and going shopping so if any of you want to offer up something amazing, I am in. You won't believe what a bald head can do in a pinch. Nobody likes to say no to a cancer patient. And if they do? Well, they have bigger problems than me, and probably deserve them because they are just plain mean. They don't see the gift. Ever. That's very sad but also much bigger than me and I've got my own fish to fry.
Right now, I feel very small. The mountain I have to scale seems enormous. Fortunately, I've climbed mountains before and I have stood on top. The journey of a thousand miles begins with one small step so that is where I must start, at the bottom, with one small step and bunch of really great people cheering for me. I will not quit which will be very exasperating to many because I will keep bushwhacking, throwing rocks, shoveling snow, and taking yet another step. I will NOT be stopped.
Thanks for reading. As you can see, writing about my journey is a pressure valve release. It's stream of consciousness, poorly organized, and often just too much, but it releases some of the negative energy and is a gentle reminder of where I've been and where I'm going (I read them weeks later). More stories to come.
"Hangin' on the promises of the songs of yesterday. I've made up my mind. I ain't wasting' no more time. Here I go again...." Whitesnake c. 1980
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