- Published on
I rarely use this blog/social media to rant. I try to be positive. See the good. Find the magic. But tonight, I am struggling. I am fed up. Cancer sucks and there's no way around it.
Tomorrow I'm hitting the lottery of medical appointments. I'm starting the day with a bone marrow biopsy. That's the one where they take a needle with a screw inside it, inject it above the hip bone and drill for bone. They put a local anesthetic in first, but it's not exactly a painless procedure. In fact, it's rather uncomfortable. I screamed through my first one. By the fourth, I'd learnt to kind of grimace through it. And sing through the crying. Tomorrow will be bone marrow biopsy number five. Like Chanel, minus the delicious scent and the feeling that something fun will happen if you wear it.
Following the biopsy, I have an appointment with the bone marrow transplant doctor. I will learn all about graft v. host disease and its myriad of potential side effects, and how the transplant will render me useless for the next 6-12 months. The doctor is actually lovely. If she wasn't busy saving my life, she's the kind of person I'd love to have at one of those metaphorical dinner parties - 10 people you'd have for dinner etc. She's a formidable force. She takes no bullshit and she lays down the facts fast and hot.
Next up, I'll have an echocardiogram. It's like an ultrasound for the heart. The first time I had it done I was still in hospital. At first it was fun watching my own heart beat on the monitor. Then the pressure of the machine, my lack of body fat, and the air-con blowing on my practically naked body made it all uncomfortable and unpleasant.
Heart checked, I'll head to another floor of the hospital for a CT scan. I'll have the pleasure of lying on a bed inside a whirring metal tube while the doctors scan my brain. I will not be able to move. By this stage, I'll probably be exhausted and starving.
As if a bone marrow biopsy, echocardiogram, and CT scan weren't enough for one day, I will finish this delightful day of testing with a pap smear. Seriously, you can't invent a day this fun in NYC.
To prepare for this joyous day, I've meditated. I've eaten well. I've started a puzzle with my dear husband. And I feel like absolute crap. It's all a reminder that I have cancer. And I hate it. I have lived my life in an attempt to be healthy and well. I did my affirmations. Ate a plant-based diet consisting of mostly organic food. Exercised. Meditated. Avoided carcinogens. And I still got effing cancer. I've walked the Camino twice goddamn it. I have two compostellas! Haven't all my sins been absolved twice over by now?
I know it's not about "fault". I didn't do anything wrong. It's just genetic bad luck. And it's hard to go through. So F U cancer. You'd better believe I'm going to beat you and make sure you don't come back. You are not welcome here.
And on that note, I'm going to bed.
Tomorrow I'm hitting the lottery of medical appointments. I'm starting the day with a bone marrow biopsy. That's the one where they take a needle with a screw inside it, inject it above the hip bone and drill for bone. They put a local anesthetic in first, but it's not exactly a painless procedure. In fact, it's rather uncomfortable. I screamed through my first one. By the fourth, I'd learnt to kind of grimace through it. And sing through the crying. Tomorrow will be bone marrow biopsy number five. Like Chanel, minus the delicious scent and the feeling that something fun will happen if you wear it.
Following the biopsy, I have an appointment with the bone marrow transplant doctor. I will learn all about graft v. host disease and its myriad of potential side effects, and how the transplant will render me useless for the next 6-12 months. The doctor is actually lovely. If she wasn't busy saving my life, she's the kind of person I'd love to have at one of those metaphorical dinner parties - 10 people you'd have for dinner etc. She's a formidable force. She takes no bullshit and she lays down the facts fast and hot.
Next up, I'll have an echocardiogram. It's like an ultrasound for the heart. The first time I had it done I was still in hospital. At first it was fun watching my own heart beat on the monitor. Then the pressure of the machine, my lack of body fat, and the air-con blowing on my practically naked body made it all uncomfortable and unpleasant.
Heart checked, I'll head to another floor of the hospital for a CT scan. I'll have the pleasure of lying on a bed inside a whirring metal tube while the doctors scan my brain. I will not be able to move. By this stage, I'll probably be exhausted and starving.
As if a bone marrow biopsy, echocardiogram, and CT scan weren't enough for one day, I will finish this delightful day of testing with a pap smear. Seriously, you can't invent a day this fun in NYC.
To prepare for this joyous day, I've meditated. I've eaten well. I've started a puzzle with my dear husband. And I feel like absolute crap. It's all a reminder that I have cancer. And I hate it. I have lived my life in an attempt to be healthy and well. I did my affirmations. Ate a plant-based diet consisting of mostly organic food. Exercised. Meditated. Avoided carcinogens. And I still got effing cancer. I've walked the Camino twice goddamn it. I have two compostellas! Haven't all my sins been absolved twice over by now?
I know it's not about "fault". I didn't do anything wrong. It's just genetic bad luck. And it's hard to go through. So F U cancer. You'd better believe I'm going to beat you and make sure you don't come back. You are not welcome here.
And on that note, I'm going to bed.
- Published on
outpatient chemo
First up, a HUGE thank you for the utterly incredible response to my birthday post.
You are all amazing.
You are all amazing.
Just as I was beginning to feel better, it was time for a second round of chemo. Due to a chromosonal complication in my diagnosis, the leukemia is more likely to return. I’d been released from a month in hospital with my blast cell counts, the dreaded leukemia, at five percent, or “borderline” remission. A second dose of chemo was needed to keep the disease in check, scheduled to commence one day after my thirtieth birthday. We celebrated my birthday quietly, and mostly at home. In preparation for the chemo, I needed to regularly administer medicated eye-drops to prevent conjunctivitis. Yummy.
The next day, chemo: round two. Aaron drives me up to Sloan Kettering. Across the traffic-heavy Brooklyn Queens Expressway, through the Hugh L Carey Tunnel, and up the FDR Drive. Will I ever get sick of that glorious sight of Manhattan coming into view? The strangely pretty East River? Turn off at the 63rd St exit. Check into the outpatient clinic.
Vitals checked - temperature, blood pressure, oxygen levels. Weight measured. Pick line inspected. The pick line, inserted during my Danbury delirium, is a rubber tube inserted into my right arm giving hospital staff direct access to my blood stream. It is used to draw blood and administer medication, and means I don’t have to be stuck with a needle every time I visit the hospital. Given its direct access to my blood stream, it is also a prime site for infection. The tubing is covered with a large sterile bandage that has to be kept dry, and changed weekly. Every time I shower, Aaron carefully wraps my arm in cling film and secures the wrapping in place with tape. Blood is drawn and set to the lab for analysis.
I sit in a large chair in the outpatient clinic. Aaron, and my friend Ashley, sit in chairs opposite. The nurse brings in a bag of clear liquid with “BIOHAZARD” scrawled across the top. This precious bag of toxic liquid contains the chemotherapy drugs that will kill any remaining leukemia cells, and potentially give me a dizzying list of side effects including nausea, diarrhea, blurry vision, headaches, and fatigue. The liquid is cross-checked by a second nurse. Patient name. Birthday (Happy belated birthday Ms. Lyons! Happy indeed). Patient number. Drug. Dosage. Expiry date. The bag is connected to a pump in a blue carry bag, and attached to the pick line. The pump will regulate the dosage over the next three hours, switch off, and automatically switch back on twelve hours later to administer the second dose.
The nurse shows Aaron how to disconnect the pump and pick line once the second dose is complete. With gloved hands he carefully demonstrates his ability to swab the pick line port with alcohol and attach a new cap. And that’s it.
We are sent home with the blue bag and told to look out for signs of a fever. The pump whirs quietly and rhythmically. At the end of the first three hours, the hospital calls to check in. Is the pump still clicking? Does everything look ok? How are you feeling? Twelve hours later, the pump clicks back on as promised, and administers the second dosage. At around 12.30am, the second dose is complete. Aaron disconnects the pump from my pick line, and we collapse into bed.
The next morning the hospital calls to check in. Did you disconnect ok? How are you feeling? Any nausea? Diarrhea? Vomiting? I feel tired.
The whole procedure is repeated twice more over the next few days. By the third dose, I am exhausted. By the end of the week, I am completely wiped out. My counts begin to drop, red blood cells, white cells, and platelets plummet with the drugs that are wiping out the blast cells. In addition to exhaustion, I start to have bouts of dizziness, nausea, and reflux. I wake up one night to go to the toilet and find myself lying on the bathroom floor. Food tastes like poison. My spirits flag and I feel depressed. My weight drops. Twice a day I take a cocktail of pills that will prevent me from getting sicker. The foul tasting pink pills that dissolve as soon as they hit the tongue and make me gag as I try to get the powdery gunk down my throat. The horse-pill sized blue and white pills that seem impossible to swallow. The nurses suggest taking the pills with apple sauce. In Danbury, when I stopped being able to tolerate pills, they gave me apple sauce. I threw it up almost immediately. Just the mention of that sickly sweet pureed mush makes me gag. What is the point of all this? Why am I going through this nightmare?
Our friends rally. They pop by the hospital before and during appointments. Paul drives me to the hospital while Aaron works. Ralph and Violet cook dinner. People continue to send text messages, emails, and cards. One card arrives from a stranger. She is the friend of a family member. I have never met her. The card is so warm and lovely it lifts me out of a funk.
Aaron is patient and generous. He holds me and tells me it is all going to be ok. He cooks. Drives me to the hospital and sits through long and boring waits. We tell each other it’s going to get better. I sit through several hours receiving transfusions of red blood cells and platelets. Within a few hours of the transfusions, I have more energy. My sight becomes less blurry. The dizziness goes away.
For two weeks, we visit the hospital every second day for blood work and transfusions. I finally start to feel better. Food regains its proper taste. The blurred vision disappears completely.
At the three week mark, I have an appointment with my oncologist. He walks into the room and grins from ear to ear. You look terrific. Your face has filled out. He waves a sheet of paper containing my latest blood results. Your counts are back up! I’ll see you in two weeks. Aaron and I look at him in confusion. Does this mean I’m in remission? He orders the removal of the pick line. For the first time in months, my arm relaxes.
Next step, the bone marrow transplant...
The next day, chemo: round two. Aaron drives me up to Sloan Kettering. Across the traffic-heavy Brooklyn Queens Expressway, through the Hugh L Carey Tunnel, and up the FDR Drive. Will I ever get sick of that glorious sight of Manhattan coming into view? The strangely pretty East River? Turn off at the 63rd St exit. Check into the outpatient clinic.
Vitals checked - temperature, blood pressure, oxygen levels. Weight measured. Pick line inspected. The pick line, inserted during my Danbury delirium, is a rubber tube inserted into my right arm giving hospital staff direct access to my blood stream. It is used to draw blood and administer medication, and means I don’t have to be stuck with a needle every time I visit the hospital. Given its direct access to my blood stream, it is also a prime site for infection. The tubing is covered with a large sterile bandage that has to be kept dry, and changed weekly. Every time I shower, Aaron carefully wraps my arm in cling film and secures the wrapping in place with tape. Blood is drawn and set to the lab for analysis.
I sit in a large chair in the outpatient clinic. Aaron, and my friend Ashley, sit in chairs opposite. The nurse brings in a bag of clear liquid with “BIOHAZARD” scrawled across the top. This precious bag of toxic liquid contains the chemotherapy drugs that will kill any remaining leukemia cells, and potentially give me a dizzying list of side effects including nausea, diarrhea, blurry vision, headaches, and fatigue. The liquid is cross-checked by a second nurse. Patient name. Birthday (Happy belated birthday Ms. Lyons! Happy indeed). Patient number. Drug. Dosage. Expiry date. The bag is connected to a pump in a blue carry bag, and attached to the pick line. The pump will regulate the dosage over the next three hours, switch off, and automatically switch back on twelve hours later to administer the second dose.
The nurse shows Aaron how to disconnect the pump and pick line once the second dose is complete. With gloved hands he carefully demonstrates his ability to swab the pick line port with alcohol and attach a new cap. And that’s it.
We are sent home with the blue bag and told to look out for signs of a fever. The pump whirs quietly and rhythmically. At the end of the first three hours, the hospital calls to check in. Is the pump still clicking? Does everything look ok? How are you feeling? Twelve hours later, the pump clicks back on as promised, and administers the second dosage. At around 12.30am, the second dose is complete. Aaron disconnects the pump from my pick line, and we collapse into bed.
The next morning the hospital calls to check in. Did you disconnect ok? How are you feeling? Any nausea? Diarrhea? Vomiting? I feel tired.
The whole procedure is repeated twice more over the next few days. By the third dose, I am exhausted. By the end of the week, I am completely wiped out. My counts begin to drop, red blood cells, white cells, and platelets plummet with the drugs that are wiping out the blast cells. In addition to exhaustion, I start to have bouts of dizziness, nausea, and reflux. I wake up one night to go to the toilet and find myself lying on the bathroom floor. Food tastes like poison. My spirits flag and I feel depressed. My weight drops. Twice a day I take a cocktail of pills that will prevent me from getting sicker. The foul tasting pink pills that dissolve as soon as they hit the tongue and make me gag as I try to get the powdery gunk down my throat. The horse-pill sized blue and white pills that seem impossible to swallow. The nurses suggest taking the pills with apple sauce. In Danbury, when I stopped being able to tolerate pills, they gave me apple sauce. I threw it up almost immediately. Just the mention of that sickly sweet pureed mush makes me gag. What is the point of all this? Why am I going through this nightmare?
Our friends rally. They pop by the hospital before and during appointments. Paul drives me to the hospital while Aaron works. Ralph and Violet cook dinner. People continue to send text messages, emails, and cards. One card arrives from a stranger. She is the friend of a family member. I have never met her. The card is so warm and lovely it lifts me out of a funk.
Aaron is patient and generous. He holds me and tells me it is all going to be ok. He cooks. Drives me to the hospital and sits through long and boring waits. We tell each other it’s going to get better. I sit through several hours receiving transfusions of red blood cells and platelets. Within a few hours of the transfusions, I have more energy. My sight becomes less blurry. The dizziness goes away.
For two weeks, we visit the hospital every second day for blood work and transfusions. I finally start to feel better. Food regains its proper taste. The blurred vision disappears completely.
At the three week mark, I have an appointment with my oncologist. He walks into the room and grins from ear to ear. You look terrific. Your face has filled out. He waves a sheet of paper containing my latest blood results. Your counts are back up! I’ll see you in two weeks. Aaron and I look at him in confusion. Does this mean I’m in remission? He orders the removal of the pick line. For the first time in months, my arm relaxes.
Next step, the bone marrow transplant...