Cancer is not a dignified disease. You would think that something so insidious, so terrible would allow a person a modicum of dignity, or at least an approximation of it. It's the least that cancer can do, you might think, to allow a person to suffer the pain, the misery, and the possible impending death with the sort of grace that they show in the movies.
You would be wrong.
In the movies, the person with cancer looks perfectly normal up until they're about to die, and then they are in a hospital bed, maybe bald, maybe not. Maybe their skin is pale, maybe the makeup man has made the actor's eyes and cheeks look sunken. But the actor is able to speak in a normal voice, remembers the names of everyone around them, and says goodbye with a soliloquy worthy of Shakespeare. Dignified. In real life, a cancer patient who has been through chemo and radiation and surgery looks emaciated, as if the disease has sucked them dry. They may be too weak to speak, and may forget where they are or even who they are. That is what cancer can do, and it is undignified.
Having cancer means that a lot of strangers will see you naked. You will be asked to strip, time and time again, for examinations, for mammograms, for PET scans, for surgeries. Naked isn't a dignified state, no matter who you are, but a cancer patient has little choice. I used to be shy about my body. Not anymore. More people have seen me naked in the last year than in my entire life. I've stopped caring about my stretchmarks, my belly fat, or the scars on the left side of my chest. I don't even think about it anymore, it's happened so often. Maybe a few years in the future, I'll probably just start taking my clothes off one day just because the person next to me said something that triggered the muscle memory.
And you can't really hide cancer from the world, not for very long. I know that quite a few private people who don't want anyone to know that they have cancer. I was one of them. I wanted to suffer in silence, just like I have done most of my life. I was used to fighting my way through pain and whatever else life threw at me. That way I could keep my dignity, I used to think. Cancer doesn't allow you that option. You're more tired than usual, when you have cancer, and you no longer have the energy or the enthusiasm you used to. It gets difficult to hide that something is going on when you suddenly start refusing all invitations or calling in sick. And you lose your hair, for gosh sakes! ALL of it. Eyebrows, eyelashes, etc. Even if you wear a wig, it's obvious to most people who see you every day that something is up. And most people want to help, if they care about you.
It's not undignified to allow people to help, I've found. It's not undignified to hold someone's hand when you go to the oncologist. It's not undignified to have someone drive you to chemotherapy and it's not undignified to need someone to help you out of bed after chemo when you're too weak to do it yourself. Reaching out to others, asking for help, connecting to the world through the hands of others--there is strength in that. There is grace in that. And there is dignity in that, even if real life isn't like it is in the movies.
Showing posts with label cancer sucks. Show all posts
Showing posts with label cancer sucks. Show all posts
Monday, August 31, 2015
Monday, July 20, 2015
I Am A Terrible Cyborg
When the surgeon stated that he would be inserting a mediport in my chest, my mind just breezed right by the whole topic. A mediport is a device that allows blood to be drawn and chemotherapy administered in one central location, to eliminate multiple needle sticks. Also, chemo is not kind to veins, so the larger veins are better for handling those drugs. I got that, but I didn't. The idea of having a block of plastic inserted in my chest was there, of course, but it wasn't real, or I didn't really want to deal with it at the time.
Even then, my brain thought a mediport looked like this:
When it actually looks like this:
When I came out of surgery, and could feel a tube going from this hard round thing in my chest up into my neck, I kind of freaked out. Tubes? Nobody said anything about tubes! I'm a "worst case scenario" person when it comes to some things, and having plastic items inserted into parts of your body brought my anxiety to a boiling point. Even though intellectually I understood the reasons for the mediport, my emotions did not. I kept having dreams of the tube in my neck suddenly bursting out of my jugular in the middle of a meeting, or being in a car accident and having the port shattered by an air bag, or lots of other fun scenarios. I'm sure that my surgeon regretted ever giving me his cell phone number.
And then I just got used to it. It was certainly much easier and convenient to have them insert a needle into the port than it would have been getting a vein punctured every time. They numbed the area, so I didn't even feel the needle pinch. Nobody else in the chemo lab seemed to be freaking out over their mediports like I was, and my anxiety seemed silly, even for me. My worries moved to the back of my head once the side effects of the chemo became very severe, and I was grateful to have the mediport.
I got this cyborg thing, I decided. I could do this. Maybe they could just install my phone/computer underneath my skin on my forearm, so that I could just have it with me all the time. At night I would just "plug in" and recharge. Easy, right? I could have some sort of remote feature that let me set the coffee maker to run from my fingertips while I changed the channel on the television. I could unlock and start my car by pointing my finger! Having some plastic or metal parts could Indeed make life easier in some ways, I thought.
Then one day, the mediport wouldn't work. They could inject stuff in, like saline, but nothing was coming out. The nurse worked on me for almost an hour, pumping enough saline into the port for a small aquarium. She got a little rough in her frustrations, pumping on the syringe and getting nothing but air. My anxieties came flooding back, because who wouldn't be concerned that the vein right next to your heart is not doing what it is supposed to? The nurses weren't freaking out, because this happens to them all the time, but I had to take a Xanax.
The mediport has bugged me ever since. At first the area around the port became tender, like a bruise. Understandable, considering. But the pain persisted, and the tube leading up my chest into my neck seemed swollen, like a rope. Over the last weeks of chemo, I could feel the tube in my neck every time I turned my head. My surgeon gave me antibiotics, in case there was an infection, and explained that sometimes mediports get tiny cracks in them that cause issues. If I could just hang on until chemo was over, he would take it out, no problem. Outpatient surgery.
Chemo is over. My oncologist wanted me to wait a couple of months, and I gave it a good try. But the area started hurting again, and I feel like I have a nylon rope underneath my skin. And I just don't feel right with it in there. It's foreign and not truly part of me. It never was. I'm not cut out to be a cyborg. Having plastic or metal parts might work for the Terminator guy, but not for me. Tomorrow, if everything goes the way I want it, the mediport will be gone, and I can go back to being a non-cyborg, semi-normal, non-descript human type once more.
Even then, my brain thought a mediport looked like this:
When I came out of surgery, and could feel a tube going from this hard round thing in my chest up into my neck, I kind of freaked out. Tubes? Nobody said anything about tubes! I'm a "worst case scenario" person when it comes to some things, and having plastic items inserted into parts of your body brought my anxiety to a boiling point. Even though intellectually I understood the reasons for the mediport, my emotions did not. I kept having dreams of the tube in my neck suddenly bursting out of my jugular in the middle of a meeting, or being in a car accident and having the port shattered by an air bag, or lots of other fun scenarios. I'm sure that my surgeon regretted ever giving me his cell phone number.
And then I just got used to it. It was certainly much easier and convenient to have them insert a needle into the port than it would have been getting a vein punctured every time. They numbed the area, so I didn't even feel the needle pinch. Nobody else in the chemo lab seemed to be freaking out over their mediports like I was, and my anxiety seemed silly, even for me. My worries moved to the back of my head once the side effects of the chemo became very severe, and I was grateful to have the mediport.
I got this cyborg thing, I decided. I could do this. Maybe they could just install my phone/computer underneath my skin on my forearm, so that I could just have it with me all the time. At night I would just "plug in" and recharge. Easy, right? I could have some sort of remote feature that let me set the coffee maker to run from my fingertips while I changed the channel on the television. I could unlock and start my car by pointing my finger! Having some plastic or metal parts could Indeed make life easier in some ways, I thought.
Then one day, the mediport wouldn't work. They could inject stuff in, like saline, but nothing was coming out. The nurse worked on me for almost an hour, pumping enough saline into the port for a small aquarium. She got a little rough in her frustrations, pumping on the syringe and getting nothing but air. My anxieties came flooding back, because who wouldn't be concerned that the vein right next to your heart is not doing what it is supposed to? The nurses weren't freaking out, because this happens to them all the time, but I had to take a Xanax.
The mediport has bugged me ever since. At first the area around the port became tender, like a bruise. Understandable, considering. But the pain persisted, and the tube leading up my chest into my neck seemed swollen, like a rope. Over the last weeks of chemo, I could feel the tube in my neck every time I turned my head. My surgeon gave me antibiotics, in case there was an infection, and explained that sometimes mediports get tiny cracks in them that cause issues. If I could just hang on until chemo was over, he would take it out, no problem. Outpatient surgery.
Chemo is over. My oncologist wanted me to wait a couple of months, and I gave it a good try. But the area started hurting again, and I feel like I have a nylon rope underneath my skin. And I just don't feel right with it in there. It's foreign and not truly part of me. It never was. I'm not cut out to be a cyborg. Having plastic or metal parts might work for the Terminator guy, but not for me. Tomorrow, if everything goes the way I want it, the mediport will be gone, and I can go back to being a non-cyborg, semi-normal, non-descript human type once more.
Tuesday, April 21, 2015
The Upside of the Roller Coaster
I have eight chemo treatments to go. Last week was difficult, but after another round of antibiotics with a side of steroids, I feel better. I even ate a cheeseburger last night for dinner, not only because I was hungry for one, but because I was hungry.
Hungry? Yes. I felt well enough to actually BE hungry, and the sores in my throat are healed. It's been so long since I remember being hungry, instead of just having a bit of an appetite. I suddenly wasn't sure what to do with that growling tummy. There was a story in the paper yesterday about a demure hausfrau who polished off THREE 72oz steak dinners(with salad, bread, and loaded baked potatoes) in 20 minutes in a competitive eating contest. Yesterday, I was hungry enough that, had I been willing to be seen within a 100 mile radius of Amarillo, I could have gone head to head with that woman.
The tapioca pudding in the fridge went uneaten and I went a little crazy. Well, not too crazy. I had salmon, and a salad, and eggs, and a banana, and toast, and a cheeseburger with two fries. Also, I ate some donuts, even though my best friend Michelle has warned me never to eat sugar, because I was feeling rather dangerous. This morning I had toast, coffee, and shrimp, followed by a lunch of tilapia tacos, spinach queso, chips, and potato soup. After each bite, I reveled in the taste, because that came back too. I could taste the extra pepper on the tilapia, and I cried a little about that.
Ultimately I gained two pounds from last week, instead of the scale moving the other way. I'm okay with that. My fingernails are still looking as though they are going to fall off, but the blisters on my hands are gone and the swelling is down enough that I could do some crochet while I had my chemo. I didn't realize how much I had come to rely on the distracting meditative peace that comes from crocheting during this ordeal, until my fingers were giant sausages incapable of bending to the simplest knots. I've got a little of my independence back!
And I'm glad to be alive, and ready for the next 8 weeks, whatever comes. I'm ready to fight again.
Hungry? Yes. I felt well enough to actually BE hungry, and the sores in my throat are healed. It's been so long since I remember being hungry, instead of just having a bit of an appetite. I suddenly wasn't sure what to do with that growling tummy. There was a story in the paper yesterday about a demure hausfrau who polished off THREE 72oz steak dinners(with salad, bread, and loaded baked potatoes) in 20 minutes in a competitive eating contest. Yesterday, I was hungry enough that, had I been willing to be seen within a 100 mile radius of Amarillo, I could have gone head to head with that woman.
The tapioca pudding in the fridge went uneaten and I went a little crazy. Well, not too crazy. I had salmon, and a salad, and eggs, and a banana, and toast, and a cheeseburger with two fries. Also, I ate some donuts, even though my best friend Michelle has warned me never to eat sugar, because I was feeling rather dangerous. This morning I had toast, coffee, and shrimp, followed by a lunch of tilapia tacos, spinach queso, chips, and potato soup. After each bite, I reveled in the taste, because that came back too. I could taste the extra pepper on the tilapia, and I cried a little about that.
Ultimately I gained two pounds from last week, instead of the scale moving the other way. I'm okay with that. My fingernails are still looking as though they are going to fall off, but the blisters on my hands are gone and the swelling is down enough that I could do some crochet while I had my chemo. I didn't realize how much I had come to rely on the distracting meditative peace that comes from crocheting during this ordeal, until my fingers were giant sausages incapable of bending to the simplest knots. I've got a little of my independence back!
And I'm glad to be alive, and ready for the next 8 weeks, whatever comes. I'm ready to fight again.
Wednesday, September 17, 2014
Battle Plans
We had my appointment with the surgeon this week. I say 'we', because my husband took off work to join me for the general hand holding, and also to be one of the hemispheres of my brain. Who needs Siri when you've got a Larry? These past seven days have consisted of me saying aloud, "Remember that we have to ask about ____," every seven or eight minutes. And Larry only forgot one of the questions, so I call that awesome.
We finally met with the surgeon, a very calm man with a matter of fact manner. I adore those qualities in my doctors. He reviewed my medical history with me, which meant, of course, that I remembered all sorts of things that I forgot to write down myself, like that time I forgot to take my blood pressure meds and ended up in the ER with supraventricular tachycardia. (How could I have forgotten that? My heart was stopped twice!)
My husband, ever helpful, then remembered "that thing".
"What thing?"
"You know, that thing."
I stared at him blankly, because "that thing" could have been anything. I've had a lot of "things" over the years. Lots of mileage, as Indiana Jones would say. Larry was determined to help me out.
"You know...remember when Zane was born and you told the anesthesiologist about it and he decided to do general anesthesia...?"
"Oh, yeah! That thing." I felt that Larry and I had bonded over our shared inability to remember something. That "thing" was a mild Chiari Malformation, where part of the brain ends up in the spinal column. The doctor wrote that down, too. I started to feel as though I was already battle scarred, with all the surgeries and various illnesses I'd survived over the years. But the surgeon didn't even bat an eye, and I realized that he'd seen this scenario played out many times.
We then found out that the kind of cancer that I had was what they call "infiltrating"; which means that it likes to travel. That part was bad. The good part was that, for now, it appears that the cancer has stayed in one place, because the biopsy of my lymph node was negative. At this point, my surgeon noted that I was pretty calm, and I commented that he missed the waterworks by a day or two.
Then the surgeon outlined all of my surgical options, least invasive to most invasive. I was surprised to learn that a complete mastectomy did not improve my survivability rate, compared to all of the other options. No, the survivability rate was the same no matter which option I chose. The doctor also spoke about chemotherapy, and radiation, and gave me the names of several oncologists that he deemed 'competent'.
Competent is good.
He gave me the option of thinking about everything before I made a decision, but I had already decided on a direction. A lumpectomy would be the least invasive, with minimal downtime. As long as the cancer hasn't decided to up and leave town, that's what we're doing. The doctor said that an MRI was the first step, prior to surgery, to see how big is big and how bad is bad.
As we walked out of the building, Larry observed that the doctor had never used words such as "You need to be prepared for___" or other terms used to impart bad news. No wonder I liked him.
So...Step 1. MRI. Step 2. Oncologist. Step 3. Schedule surgery.
"Team Tina" has a plan.
We finally met with the surgeon, a very calm man with a matter of fact manner. I adore those qualities in my doctors. He reviewed my medical history with me, which meant, of course, that I remembered all sorts of things that I forgot to write down myself, like that time I forgot to take my blood pressure meds and ended up in the ER with supraventricular tachycardia. (How could I have forgotten that? My heart was stopped twice!)
My husband, ever helpful, then remembered "that thing".
"What thing?"
"You know, that thing."
I stared at him blankly, because "that thing" could have been anything. I've had a lot of "things" over the years. Lots of mileage, as Indiana Jones would say. Larry was determined to help me out.
"You know...remember when Zane was born and you told the anesthesiologist about it and he decided to do general anesthesia...?"
"Oh, yeah! That thing." I felt that Larry and I had bonded over our shared inability to remember something. That "thing" was a mild Chiari Malformation, where part of the brain ends up in the spinal column. The doctor wrote that down, too. I started to feel as though I was already battle scarred, with all the surgeries and various illnesses I'd survived over the years. But the surgeon didn't even bat an eye, and I realized that he'd seen this scenario played out many times.
We then found out that the kind of cancer that I had was what they call "infiltrating"; which means that it likes to travel. That part was bad. The good part was that, for now, it appears that the cancer has stayed in one place, because the biopsy of my lymph node was negative. At this point, my surgeon noted that I was pretty calm, and I commented that he missed the waterworks by a day or two.
Then the surgeon outlined all of my surgical options, least invasive to most invasive. I was surprised to learn that a complete mastectomy did not improve my survivability rate, compared to all of the other options. No, the survivability rate was the same no matter which option I chose. The doctor also spoke about chemotherapy, and radiation, and gave me the names of several oncologists that he deemed 'competent'.
Competent is good.
He gave me the option of thinking about everything before I made a decision, but I had already decided on a direction. A lumpectomy would be the least invasive, with minimal downtime. As long as the cancer hasn't decided to up and leave town, that's what we're doing. The doctor said that an MRI was the first step, prior to surgery, to see how big is big and how bad is bad.
As we walked out of the building, Larry observed that the doctor had never used words such as "You need to be prepared for___" or other terms used to impart bad news. No wonder I liked him.
So...Step 1. MRI. Step 2. Oncologist. Step 3. Schedule surgery.
"Team Tina" has a plan.
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