First day of chemo

First day of chemo.  Jennifer drove me to the GW Cancer Center. It's a busy place, where patients hurry up and wait. 9:05 am: Check in, wait. 9:20: Vitals, wait. 9:40: Blood draw, wait.  9:55: Get called back to see the oncologist, wait.  10:20: Oncologist arrives; we talk about the treatment plan (more below), then go back out to reception and wait.  10:55: Get called back to the chemo delivery area, wait. 11:35:  the nurse hooks me up to a saline pump for hydration.  No drugs yet.  12:05:  I start the anti-nausea meds (Emend, 150 mg 5 mL; Aloxi 250 mcg; Dexamethasone 12 mg).  Come on, hurry up and poison me. I'm an impatient patient.

During all of this waiting, Jennifer finds the social worker and makes a new friend.  Jennifer is planning on getting her Master's in Social Work this fall, and finds this stuff very interesting.  I'm less of the touchy-feely sort, but acknowledge that social work and emotional support can provide a crucial component to a recovery plan.  I like to think that I am relatively well-equipped with tools and techniques to handle this process, but at times I know that I am a stranger on a solitary journey through what for me is an uncharted land.  I appreciate the guidance of those who have gone before, but know that each person's terrain varies according to their disease, predisposition, attitude, and emotional state.  Their journey is not mine, and the maps of others are of limited use, for they can only provide suggestions of what I might encounter. I am forging my own path with this disease, not willingly, but so it is with life.

 Anyway, Dr. Aragon-Ching told us that she was going to modify the the treatment plan. Although the standard GemCis regimen calls for 3 weeks of chemo, followed by one week off, she said that in her experience, almost no one is able to tolerate the third week of chemo. (Her actual words were, "I've never had a patient be able to do the third week."). Instead of having people set up expectations then be thrown off, she said that I should plan on having chemo on days 1 and 8, then have my third week off, then repeat 4 times. This means that I might be done with chemo by late April instead of later May. It also means that my surgery could be in May instead of June.  All of this remains subject to change - if there is anything that I have heard in the past weeks as I prepare for chemo, it is flexibility. 

Today I am starting off with a trio of anti-nausea drugs, followed by a steroid, then the gemcitabine (Gemzar), followed by the cisplatin.  The cisplatin is the hardest on the system, and is responsible for most of the side effects, such as nausea, changes of taste, weariness, as well as risks of kidney damage or nerve damage. While the side effect rate is relatively low (1% or so), it is serious enough that they carefully monitor for it.  The list of side effects for both drugs is 8 pages of fine print. I wonder how many people actually read it.

At 1:10 pm, I finally start the main event:  Gemcitabine (2380 mg) for 30 minutes, followed by 60 minutes to infuse the Cisplatin (160 mg), which is mixed in with magnesium sulf 50% (1000 mg) and Mannitol 25% (12500 mg).  The chest port seems to be working just fine -- unlike an IV in the arm, I have zero discomfort or sensation of the drugs entering my body. The pump has a repetitive rhythm as it slowly pushes the life giving poison into my veins. I lean back in the easy chair, flip up the leg rest, pull the blanket around me, put on my noise canceling headphones, crank up Clapton on my iPhone, and close my eyes.  I'll enjoy it while I can. 

Fifteen minutes later, a piercing shriek jolts me awake.  The fire alarm is going off, and a disembodied voice is advising everyone to evacuate the building via the stairs ("do NOT use the elevator!"). I begin to contemplate how long the batteries on the IV pump will last, and whether to carry the bags or carry the pole down the stairs, until the nurses walk around and tell us to stay put.  They advise, "most of the time it's a false alarm." I don't know if I should be reassured or not, but push up the volume on Slow Hand and try to close my eyes, although the flashing strobe intrudes on my attempt to rest. After about 10 minutes, the alarm is silenced, and I'm back to the low growling of the IV pump. 

By 2:40, all the cisplatin is in my body.  The nurse hangs another bag of saline and tells me that I need more fluids.  Drink as much as you can, she says.  You don't want any of this stuff in your kidneys any longer than necessary.  The more fluids you push through your system, the better.  Maybe I'll be done by 3:30 or 4 pm. I don't think I'll go into the office today.

I'm glad that my bladder has mostly recovered from the second TURBT - it was badly scarred with the removal of a chunk of muscle around the site of the tumor base, as well as 10 other scars created by the removal of those smaller tumors.  It didn't want to expand as much as it used to, leading me to conclude that the effect of the two surgeries was to change the gender of my bladder.  My capacity dropped from a gallon to a thimble.  Welcome to our world, said Jennifer, and every other mother who heard this report.  But that's not all.  For several weeks after, contracting the bladder during urination would cause a sharp pain as the muscle protested. I dreaded having to urinate, and wondered if this was a way of my bladder telling me that it was ok with my decision to get rid of it.  What a vengeful organ.  But more recently it's been less painful.   The relationship between my bladder and me may be like other aspects of life, perhaps: the initial idea of ending a long-standing relationship can be marked by sharp pain and acute discomfort, but as time passes, you get more acclimated to the idea.  I'm now at peace with the idea that my bladder will be removed in a few months. I understand that I have a highly aggressive cancer laced throughout the structure of that organ, and keeping it is like having a ticking time bomb in my body. The chemo that I am having is intended to attack all of the cancer wherever it might be, but it is not the primary treatment for this cancer - it is adjuvant to the proven treatment of removing the diseased organ, as well as the surrounding organs and tissue that are likely to hold the carcinoma. Begone, you diseased organ, you specter of death, you foul imposter, you useless thing. 

Humm, maybe the drugs are affecting me more than I realize . . . .   

I get home at about 5 pm, and as I take off my outer shirt, my new iPhone 4S slips out and drops on the tile floor of my kitchen and shatters the glass.   What a pain.  Fortunately, AmEx's purchase assurance will cover the cost, and I can either have Verizon replace it or Apple repair it.  If this is the worst thing that happens during chemo, then I can survive this.  But if this is a harbinger of things to come, then I'm not going to be a happy camper.