Wednesday, February 9, 2011


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!

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