So I keep trying to update here and failing. It's not a well-known or well-studied side effect but any cancer patient can tell you about "chemo brain." Things start to feel a little fuzzy and for me it becomes very difficult to focus on tasks for more than five minutes at a time. So. I think I'm going to try to keep this as short/to-the-point as possible. (And will likely fail miserably.)
Surgery. Sigh. It ended with the most frustrating possible outcome. My surgeon wasn't able to remove the tumor safely, but she also couldn't access the biopsy sites with just a scope. So she had to make a full incision just to take biopsies. Which, if you've been following along carefully at home, you'll know means that in a few months I will have to another full surgery for the resection of the tumor. Which, to put it delicately, sucks. (What? Trust me, in my head I had many less delicate things to say.)
Pain management's effort was less than stellar. I'm starting to suspect that I have a resistance to some of these lovely opioid drugs, because the team's first try at my hydromorphone dosing by weight and height Thursday night was an abject failure and they eventually ended up pushing me to the maximum allowed dose just to make my pain tolerable. The anesthesiologist came to apologize to me the next morning.
Rest of my hospital stay was...well, a hospital stay. Mostly uncomfortable, although I got lucky and my roommate cleared out on Friday, leaving me with a single for the weekend. Probably for the best, as I was this close to whacking my roommate's mother over the head with my IV pole. Inflicting Dr. Phil on another person against their will should qualify as torture.
Monday, I received my first chemo dose at the hospital with three drugs: vincristine, adriamycin, and cytoxan. I'll talk more about the chemo in detail once my brain recovers from said chemo. Once chemo was finished Monday night and the nurses were convinced I wasn't going to fall over, they let me go home.
Chemo continued with just cytoxan on Tuesday and Wednesday. I'm feeling quite a bit better now, but my mouth is plagued with this awful chemical-y/metallic-y taste that makes eating a trial. More on chemo in my next post!
Oh, and I would be remiss if I didn't thank everyone for the prayers, gifts, cards, well-wishes, and help. So thank you so very much for brightening my days and making life a little easier.
Friday, February 18, 2011
Wednesday, February 9, 2011
Science.
Surgery on Thursday, 11:30 am. Finally had the date confirmed, and as much as I dread the start of treatment this indeterminate waiting has been worse.
In the meantime, I thought I would take the opportunity to provide a bit more background about my disease and treatment. For those with front-row seats for my first go-round, you probably already know all you need or want to. But I know many others have questions and that many also are fortunate enough to not possess intimate knowledge of oncology.
At age 16, I was diagnosed with Wilms tumor, a cancer of the kidney most common in childhood. It's named Wilms after the German surgeon who first documented cases of the tumor; it can also be called nephroblastoma. I had a radical nephrectomy, meaning that I had my right kidney and some of the surrounding lymph nodes and other tissue removed. It's not often that a cause for cancers can be easily identified, but in my case, this tumor is linked to my hemihypertrophy. Hemihypertrophy is a congenital condition (congenital means that it's caused by a mutation in the genes present at birth but not inherited) which cause one side of my body to grow faster than the other. My right side is about half an inch longer than the left. I may or may not be guilty of using this fact to get points on an orientation week scavenger hunt.
Hemihypertrophy causes an increased risk for Wilms. However, most of these linked tumors show up by age 6. I had ultrasounds every year until age 9 to screen for kidney tumors. My original diagnosis at 16 was very much out of the ordinary. More than one doctor has referred to it as "so strange." (Very comforting, guys. Really.)
After my kidney and the accompanying tumor were removed, I endured five months of chemotherapy. I always found it rather ironic that the cancer itself never made me feel sick; that honor belonged solely to chemo. You'll plenty more about chemo in the future, but for now just realize that the vast majority of chemotherapy agents are poisons. They are poisons directed at functions of the cell hyperactive in cancer cells but still present in many normal cells. You may have heard of targeted therapies, which aim at abnormal features only found on cancer cells. However, very few such therapies are available, and almost none regularly in use in childhood cancers, so I won't be receiving any such drugs.
After chemotherapy, I had five and a half years of clean scans and blood tests, with no evidence of cancer. Two weeks ago, I went in for a yearly scan. Much to my shock, the ultrasound wasn't normal, with a mass growing in the spot where my right kidney used to be. I went immediately for a CT scan, which found three lesions in the liver as well. Without a biopsy, it is impossible to say with certainty this is the same tumor. But the location, coupled with the fact that it is simply statistically very unlikely that I would have a second cancer, leads my doctors to believe this is indeed a recurrence of the same Wilms tumor.
So, what does this mean for me? It begins with the surgery this Thursday. The procedure will begin laparoscopically, which means the surgeon will make a small incision and use a scope to examine the tumor. The main mass is sitting on the inferior vena cava, which is the big vein into which all the smaller veins and capillaries of the lower body flow into before entering the heart. Imaging studies couldn't get a clear enough picture of whether the tumor has invaded the vena cava (which would make it safer to treat before the full surgery) or is just compressing it. If the surgeon decides that it's the latter and that a resection at this time is possible, she'll make the full incision and remove the mass as well as what she can from the liver. If not, they'll use the scope to take biopsies and get out of there. I won't know until I wake up from anesthesia which procedure occurred.
(Hopefully this time they'll put me on the proper amount of morphine and I'll be doped up enough not to care. Last time, I came out of anesthesia and started screaming and crying in pain until the docs came skidding into the room and doubled my morphine.)
After surgery, I'll start chemotherapy. Knowing my oncologist, she'll want me to start chemo by early next week. Somewhere in the middle of chemo, I'll be receiving radiation therapy, and if they can't do surgery now, a full resection of the tumor. I'll know much more once I have surgery and actually get started on treatment.
I'll try to update here as soon as possible after surgery, but if it is in fact the full surgery I'll probably be too doped up to manage that until Friday. I'll try to make sure my father updates my Facebook for me as soon as I'm out of the OR, but he rarely uses his own Facebook so we'll see how that goes. Pray for me/wish me luck/please don't send me flowers because I'm allergic!
In the meantime, I thought I would take the opportunity to provide a bit more background about my disease and treatment. For those with front-row seats for my first go-round, you probably already know all you need or want to. But I know many others have questions and that many also are fortunate enough to not possess intimate knowledge of oncology.
At age 16, I was diagnosed with Wilms tumor, a cancer of the kidney most common in childhood. It's named Wilms after the German surgeon who first documented cases of the tumor; it can also be called nephroblastoma. I had a radical nephrectomy, meaning that I had my right kidney and some of the surrounding lymph nodes and other tissue removed. It's not often that a cause for cancers can be easily identified, but in my case, this tumor is linked to my hemihypertrophy. Hemihypertrophy is a congenital condition (congenital means that it's caused by a mutation in the genes present at birth but not inherited) which cause one side of my body to grow faster than the other. My right side is about half an inch longer than the left. I may or may not be guilty of using this fact to get points on an orientation week scavenger hunt.
Hemihypertrophy causes an increased risk for Wilms. However, most of these linked tumors show up by age 6. I had ultrasounds every year until age 9 to screen for kidney tumors. My original diagnosis at 16 was very much out of the ordinary. More than one doctor has referred to it as "so strange." (Very comforting, guys. Really.)
After my kidney and the accompanying tumor were removed, I endured five months of chemotherapy. I always found it rather ironic that the cancer itself never made me feel sick; that honor belonged solely to chemo. You'll plenty more about chemo in the future, but for now just realize that the vast majority of chemotherapy agents are poisons. They are poisons directed at functions of the cell hyperactive in cancer cells but still present in many normal cells. You may have heard of targeted therapies, which aim at abnormal features only found on cancer cells. However, very few such therapies are available, and almost none regularly in use in childhood cancers, so I won't be receiving any such drugs.
After chemotherapy, I had five and a half years of clean scans and blood tests, with no evidence of cancer. Two weeks ago, I went in for a yearly scan. Much to my shock, the ultrasound wasn't normal, with a mass growing in the spot where my right kidney used to be. I went immediately for a CT scan, which found three lesions in the liver as well. Without a biopsy, it is impossible to say with certainty this is the same tumor. But the location, coupled with the fact that it is simply statistically very unlikely that I would have a second cancer, leads my doctors to believe this is indeed a recurrence of the same Wilms tumor.
So, what does this mean for me? It begins with the surgery this Thursday. The procedure will begin laparoscopically, which means the surgeon will make a small incision and use a scope to examine the tumor. The main mass is sitting on the inferior vena cava, which is the big vein into which all the smaller veins and capillaries of the lower body flow into before entering the heart. Imaging studies couldn't get a clear enough picture of whether the tumor has invaded the vena cava (which would make it safer to treat before the full surgery) or is just compressing it. If the surgeon decides that it's the latter and that a resection at this time is possible, she'll make the full incision and remove the mass as well as what she can from the liver. If not, they'll use the scope to take biopsies and get out of there. I won't know until I wake up from anesthesia which procedure occurred.
(Hopefully this time they'll put me on the proper amount of morphine and I'll be doped up enough not to care. Last time, I came out of anesthesia and started screaming and crying in pain until the docs came skidding into the room and doubled my morphine.)
After surgery, I'll start chemotherapy. Knowing my oncologist, she'll want me to start chemo by early next week. Somewhere in the middle of chemo, I'll be receiving radiation therapy, and if they can't do surgery now, a full resection of the tumor. I'll know much more once I have surgery and actually get started on treatment.
I'll try to update here as soon as possible after surgery, but if it is in fact the full surgery I'll probably be too doped up to manage that until Friday. I'll try to make sure my father updates my Facebook for me as soon as I'm out of the OR, but he rarely uses his own Facebook so we'll see how that goes. Pray for me/wish me luck/please don't send me flowers because I'm allergic!
Tuesday, February 1, 2011
This Can't Be Happening
And yet I know that it is. I know it with a certainty that suffocates me, leaving me gasping for air though my muscles haven’t moved.
I believe that this more than suffices as a first post, don't you?
But this wasn’t supposed to happen. It sounds trite, I know, but it wasn’t. I had been granted that tantalizing word, cured, and why shouldn’t I take it? I had passed the magic number, five. Hell, only a few days ago I had marked six years since diagnosis. I was a cancer survivor.
For while I am writing to tell the story of now, this is equally much the story of then. Then was six years ago, the middle of my junior year of high school, not even half past age sixteen. It was the opening day of “Hell Week” for our drama production, but instead of practicing my small chorus part I was sitting in an emergency room, sobbing as a doctor informed me my CT scan had located a large tumor on my right kidney.
The surgical removal of my kidney and five months of chemotherapy followed. I lost my hair, the nerve function in my ankles, and my appetite. I like to think I clung to my dignity. I certainly held fast to my stubbornness, refusing to drop out and finish the semester in summer school.
And then it was over. Cancer gone, treatment complete. Each subsequent scan caused less and less anxiety. When I walked into this year’s follow-up visit, my biggest concern was the splitting headache caused by a morning migraine. I welcomed the ultrasound as a chance to sit in a dark and quiet room.
I waited patiently after the test for the tech to dismiss me, but when she instead told me my oncologist was on the phone, my stomach dropped. I was crying before the phone made it to my ear. My doctor’s words only confirmed what I already knew: my ultrasound wasn’t normal.
This can’t be happening. This can’t be fucking happening. I skipped straight past anger into denial, my head swimming as it struggled to comprehend an event which I had honestly and firmly believed could not happen.
But it is happening. I have cancer. Again. So I figure this time I might as well write about it. Partly out of convenience, since my friends are scattered across the country and sending individual updates is neither practical nor much fun. But mostly, I love to write and have had so few chances to do so (at least on topics that weren't 19th century British literature). Moreover, part of me wants to know that somewhere in all this turmoil, my voice is heard. I want to be more than just my disease and its treatments to those who know me as well as those who don't.
I promised a certain friend I would try to keep this blog as light-hearted as possible. You can also anticipate inappropriate and off-color humor, as well as more swearing than most people would find strictly (or at all) necessary. However, those who know me already know better than to expect anything else.I believe that this more than suffices as a first post, don't you?
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