Blood, Studies, Shots and Chemo

Warning: this post is over 5,300 words, or about 10 printed pages.


I'm a 44 year old male Minnesotan, a teacher, writer and musician by trade. I have a form of cancer known as Bladder Cancer, also sometimes called Transitional Cell Carcinoma, or TCC. "With squamous cell differentiation", the doctors would tell me. It's is a highly aggressive, very rare, and extremely deadly cancer that affects both men and women. According to statistics I’ve read, it is most often environmentally caused. Oddly, it is even more common among smokers than lung cancer (I am not now and have never been a smoker). I'm pretty sure I contracted my cancer environmentally while working in a paint warehouse nearly 20 years ago. Here, I was repeatedly exposed to Benzene, a solvent used to clean the commercial paint sprayers, and a known cause for bladder cancer. I remember reading somewhere that Bladder Cancer has about a 20 year lead time until disease appearance, and that’s right about on track for mine.

Most bladder cancer patients are in their 60's and 70's. We don't really know why I got it so young.

Since the cancer’s initial discovery in June, 2010, my cancer has metastasized, which means that it has spread. I'm now at stage 4. As high as it goes. This is the elite club that you don't want to be in. It means that the cancer has gone systemic and is now spreading freely through my lymph nodes and bloodstream. Its no longer contained in the bladder -- or even seen in the bladder at all at the moment -- but is now in the lymph system and in the lungs. I'm told that the kidneys are a common next target for TCC. Common life expectancy for TCC after reaching a stage 4 diagnosis is about 2-4 months, initially. I metastasized about 6 months ago. Luckily, the cancer hasn’t yet affected any vital organs to any great degree at this point, so I have a reprieve -- an unusually good situation for a stage 4 patient, while it lasts. Conservative estimates on my lifespan range now from 2 years to the more optimistic "less than 10 years". I am told that there is no hope of remission or eliminating the disease. Miracles can happen, but don't plan on it, kid.

What keeps me going is that new therapies are being tried all the time, and the longer I can buy time with chemo, the better the chance that they'll come up with something new that works better.

So, that's the backstory.

Zoom in on Minneapolis, Minnesota. A town like any other, with people going about their daily lives. Meet Michael. He's had a relatively quiet spell after his last chemo series, which lasted for a grueling 18 weeks, and has lately been enjoying the company of his dog, his girlfriend, his daily pursuits... while his energy slowly improves. But the last couple of weeks have totally sucked. In a major way.

Oh: and, fair warning: this will be gross. Sorry about that. See, the thing with this cancer thing is that it may well get more and more gross and difficult to read until I'm left talking to myself. That day might even be today, I don't know.

Monday

A week ago Monday I had a barrage of tests at Mayo. One of the key tests was a PET/CT scan to see how far the cancer has progressed.

When I was getting prepped for this, gowned and waiting, they brought in a member of the catheterization team.

I wore (suffered, endured) a catheter for two full weeks at home following a bladder surgery last fall. The catheter I had in at that time was a so-called "3-way" catheter that involves an "in" tube (for adding saline to flush the system and bladder), an "out" tube (which helps the catheter to function in the way that you might guess a catheter is supposed to function) and a 3rd tube, which adds saline to an internal balloon that keeps the catheter in. Note: don't ever try to yank a 3-way catheter out yourself, you'll pass out from the pain. I have this on good authority.

All told, the catheter is a fairly monstrous device made of blue rubber and clear plastic tubing, and is the diameter of a pen-type highlighter. It has some completely unnecessary ridges on the plastic sides of the part that gets inserted. Think capped fountain pen, perhaps. Perhaps this was a well-intentioned yet misguided design choice by the manufacturer, meant to give the device a little more pizazz. So to speak.

So, they pull out this thing and I start to panic and explain all the troubles that I had before, when I wore one for two weeks. How uncomfortable it was and how I shuffled around with an undiagnosed bladder infection for the first 10 days. I hit the 10 pain scale a few times during that time when the bladder would spasm and cramp -- something that can be common while touching the bladder from the inside. Which is what the catheter and its balloon do, by design.

I tell the Mayo catheter tech that I've had PET/CTs in the past there with no catheter.

Sorry, the tech says: the doctor wants a catheter in. You can reschedule the scan, if you'd prefer?

At this point I'm scared and very apprehensive... but I want he results of this scan. This is why I'm in Rochester -- to see how much the cancer has grown -- or "progressed", as they call it -- if at all, since the end of chemo 6 weeks ago. I remind myself that some catheterizations I've had in the past have been relatively painless, if the tech knows what they’re doing. At this point I'm mostly convinced to just go ahead, in order to expedite the scan and just get the results. Maybe Dr. Hunter (my urologist) ordered the catheter to get a better picture of the bladder. It turns out, no. But I get ahead of myself.

At this point the tech and I start talking about lidocaine, which I know sounds like "Iocaine powder" from the Princess Bride, but is far less deadly. Lidocaine is what Dr. Hunter always uses for his cystoscopies on me. That's where they stick a pencil-sized, flexible, shiny black camera tube up you-know-where and I get to watch live, closed-curcuit TV of the inside of my bladder. He always asks if I want to watch on the TV screens and I always say I'll wait for the movie to come out. But I usually peek anyhow at some point. Lidocaine gel is a sterile numbing agent -- a little like Novacaine that you'd use at the dentist -- except this is added in appropriate and helpful places with the aid of a flexible, plastic-needled syringe. It stings a bit, but its better than the alternative.

Lidocaine? No, the tech says. They don't have lidocaine available. It's by doctor's orders only. Prescription, you see. And we don't have a prescription for it. And can't get one on short notice. We'll have to do it without lidocaine. Or not at all.

After much internal deliberation, but feeling that I really don't have a choice, I decide to go ahead with the catheter and the scan, even though I know that the catheter is going to hurt like hell. Just breathe through it, and all that shit.

I'm surprised that my girlfriend Jen didn't hear me screaming repeatedly from the waiting area 200 feet away, even over the persistent din of Fox news. The catheter turns out to be monumentally painful going in and is frankly a traumatizing, violating experience: the catheter tube freely tears its way through the urethral sphincter and also through the prostate, which -- if you were in that movie where they shrink people down and inject them, in a miniature spaceship, to fix some problem that only a team of miniature scientists can fix – the prostate would be one of the first stops you'd make on your way to the bladder. Yeah, I said this would be pretty gross. Feel free to tune out.

In the waiting room afterward, I hugged Jen hard and cried for awhile.

So the scan was done, the catheter was removed, and yea, we left that place of torment.

Immediately, my reward for being catheter-free was that I experienced insanely painful, burning urination for about 24 hours. Think wire brushes. It wasn't hard to figure out what caused that. 

Tuesday

Tuesday we met with doctors and got the unwelcome news that the cancer is "progressing" (growing) and that I would need to start chemo up again. ASAP. Within a week, preferably.

This was hard news to hear for both Jen and I, which is an understatement, I guess. I've been told that chemo is going to be a part of the rest of my life, with several series' every year to keep the cancer at bay. I just wasn't expecting it again so soon. I had wanted to take another trip with Jen somewhere. To have a little more warning. A little more time to prepare, mentally. To make the most of it. 

Done at Mayo, we headed back to the cities. Luckily, the burning pain had faded by Tuesday night for the most part.


Wednesday


Even with the pain following the catheterization, there had been no bleeding. But then, blammo: on Wednesday morning (and not the first trip to the bathroom that day) the floodgates opened and all of sudden I had found a way to turn water into wine. "Holy shit!" I'm pretty sure I said in the Perkins bathroom in Bloomington, while waiting for new tires on my car. My guess was that I'd just lost a half a pint of blood. At least. And a similar amount every time after that. I was afraid that I was going to pass out imminently from internal blood loss. I thought that this might be it: the beginning of the end. It’s scary enough to think that you're about to die in the near future, but I had never before thought that I might die in a Perkins bathroom in Bloomington. There really isn't a great place to die, but I can think of many better.

So, freaked out. I called everyone. I called the urology on-call people at Mayo, I called my support network people and alerted them that I might need to go to the ER promptly (forming a clot could be not only painful but could seize up the whole system and require -- at best -- another catheterization in the ER or at worst, a surgical procedure to reopen things and to stop the bleeding. Either way, more catheters, and the second option involves sedation, as well as cameras, metal tools and various devices including cauterizing lasers being inserted up there. All at the same time. Talk about wire brush. For weeks afterward.

Frantically driving home from the Perkins -- by way of the Tire place, where I didn't even blink at the more than $800 bill, signing the visa receipt and leaving with as few words as possible -- I pounded drinking water from the bike bottle I'd thoughtfully brought along that morning. The whole way, drinking water that had been salvaged from my Perkins water glass and from the water cooler at the tire dealership. Brother Kevin left work on short notice to wait with me in case I needed an ASAP ride to the ER. 

So, on advice of the Mayo urologists, I drank lots and lots of water and set a timer for every 10 minutes. After a few hours the bleeding became less aned less. And I managed to avoid the ER and another catheterization.

It was all completely fine and normal from then on out, ever-after. Or was it?

Sunday

On top of everything else, I had gotten the news earlier in the week that an Aunt that I was very close to, and who was very much the matriarch of our large family, had just passed away in Iowa and that the funeral would be the following Saturday. I wanted to go, and did. But spending my last weekend pre-chemo far away from Jen and my dog and my home and my doctors was hard. In the end it was good to see so many of my extended, seldom-seen family members and to have a chance to support my mother, who has been such a great source of support to me.

At the end of the weekend, when many of my family were saying goodbye to me, they had that look in their eyes as if they thought they might be saying goodbye for the last time. I’m pretty sure they all believed that I didn’t notice.

Back at home Sunday Night, everything was normal, normal, normal, and then, all of a sudden... water into wine again, but much more severe than before. Again, my guess was that I had lost a pint of blood at a minimum that evening. Against my objections, my mother decided to come over just in case I needed to go to the ER urgently, which was a very good call of her part.

This time, we were not so lucky. The gulping of the water and the bathroom breaks every 10 minutes simply stopped working after a while. Nothing was working. Which only meant one thing: a clot. The spirit was willing, but the flesh was blocked. And that gallon of water I just pounded would be coming due shortly.

When the faucet shut off completely, we were off to the ER at Abbott Northwestern at about 11 pm. I passed the cursory security guard triage and made it through the locked doors. Inside, the ER was blissfully empty. No-one in the waiting room, and empty beds in back.

(http://www.wongbakerfaces.org/)

The pain grew quickly from bladder discomfort, where you "have really needed to go for a while now, and would someone just stop the damn car, I can go in the bushes" to searing pain like something is actually going to rip open inside there, to -- and this is where I reached my #10 pain level that is descried as the worst pain you can imagine and is accompanied by a crying, frowney face on the pain scale card -- the urine backing up into the kidneys. It felt like I'd just been shot in my low back and flank, and I was reduced to a crying, pleading, screaming, mess, begging them to do something for the pain. A 10 mg shot in the ass of morphine did nothing, and I didn't even feel the needle going in. Chewing a 5mg oxy-co-done -- which is not an approved method of taking it, and is more of a street-junkie way of ingesting it fastest) did nothing, either. It tasted like you'd imagine a chalky pill would.

The nurse spent a very long while getting the catheter contraption and supplies set up while I paced the room and asked over and over why it was taking so long, why it was taking so long, and: where was this pain coming from?

Blissfully for me, the ER doc was able to prescribe my friend Lidocaine for the catheterization, and the nurse slid the catheter in relatively painlessly. Compared to the 10-scale-pain in the back, sides and bladder, everything else was a mosquito-buzz, anyhow.

As pressure was relieved, the pain in the back and flank faded at the exact same rate as the bladder pressure over about 15 seconds. From 10 to 0 in about 15 seconds is heavenly. The absence of pain, for a little while at least, feels like pure pleasure. When I could speak again, I realized that my incoherent trauma had not been mine alone. I called out weakly, "I'm okay now, mom," to my 74 year-old retired mother, waiting anxiously on the other side of the curtain. By all rights I should be taking care of her, not the other way around. "Good," she called back. 

I find that I have some glimmer of understanding now of why people cut or injure themselves. During that level of pain, one can think of nothing but the pain. It is everything. It clears your mind -- but in a horrible, horrible way. I know that some people do have emotional pain that is (to them) bad enough so they feel the need to intentionally inflict a high level of pain in order to shut down their brains. This thought makes me extremely sad.

Needless to say, I'm not the sort of person who engages in serious pain for fun, and I have a harder and harder time these days understanding people who do. In the ER that night, I was mindless with pain and might have started breaking up the ER room had it gone on much longer. I noticed the uniformed and armed security guard, stationed not far away, was keeping an eye on me. If someone would ever intentionally reach that level of pain… it is beyond my understanding.

Released, finally, at about 2:30 am, and sent home with an “in-dwelling 3-way catheter" over night, to be removed at Mayo the next day. My mom volunteers to sleep on the couch to keep an eye on me, which I am grateful for, but guilty about at the same time. 

One of my worst nightmares is having an indwelling catheter. You don't really sleep when you have a catheter in: cumbrous tubing and collection bag. You lie down in the position that hurts least, and eventually pass out. You'll awake in the morning in the exact same position, stiff and sore. Hopefully the tubes will not have kinked or leaked and the bag isn't full enough that it the urine could be backing up into your kidneys. Setting a few overnight alarms helps with that. Hopefully, the bladder spasms (the cramping that the bladder does in reaction to a foreign object in it) don't drag you out of sleep and bring you back to a level-10 pain (as they did several times for me when I wore a catheter for 2 weeks last year). I have a prescription for bladder spasms, which helps.

Monday

Still with the catheter in, I limp to the car and brother Kevin drives me to Rochester and to Mayo,  to accomplish many things over two days. We're supposed to meet first with Dr. Abbott (the new Mayo oncologist) and sign the paperwork for the research study that I had been told I qualified for. This is a study that is testing a commonly used Bladder Cancer/Transitional Cell Carcinoma (TCC) drug known as Docetaxel (generic name) along with one of two possible additional experimental treatments. Ironically, this is the same drug company that Martha Stewart sold stock in in a big ole' panic following alleged insider information, and subsequently spent a little time in the Joint. But the drug company made money later and, word on the street is that these drugs are working and the trial so far is a success.

But, It turns out that because of my recent bleeding issue, I'm being disqualified. They don't know why I'm bleeding so much, and we all suspect the catheterization, but a catheterization shouldn't by itself cause two bouts of serious bleeding. I also have slightly higher than normal kidney values. Which they assured me is not dangerous in a daily sense, and is frequently seen in someone who has gone through as much chemo and recent contras-based testing as I've had. Those values should come down a bit, but Dr. Dr. Abbott mentioned that this can be a waiting game for admission, Meanwhile, I would not be getting treatment at all: something I can ill afford right now. 

So, I'm out of the study. I'm bummed about it, but also relieved in a way. It means fewer trips away to Rochester. Shorter times away from Jen and my dog Boo and home. It means an infusion center, close to home, where I know most everyone. And a new-to-me local oncologist (Dr. Straightshooter) with a history of "sharing patients" my my oncologist at Mayo, Dr. Abbott. The two of them are working together on my case. Which is more than I can say for Dr, Grampa (my former local Oncologist whom I fired at the end of chemo last time) and Dr. Pat, my old Mayo Oncologist, who I found useless. But I'll never know if those two drugs would have helped me. I tried, at least.

Apparently there is no hope of getting into this study, now, as Dr. Abbott doesn't believe in "hopscotching" treatments (jumping around to different med combos without giving one sufficient time to work) so he'd want to see how I'm doing (I learned that “progressing” is a bad term in the cancer lexicon) on the current course of Docetaxel alone.

Bring dropped from the study clears up my schedule at Mayo considerably, as most of the other things I had to do down there were mainly tests related to study admission: an EKG for my heart, a PET scan (the PET/CT scan I'd suffered through a week earlier wasn't the right type of scan for the study. Apparently the PET and the PET/CT are totally different. As well as x-rays of chest, blood tests, etc. All over the clinic campus. At Mayo, they give you a convenient printed daily schedule that you carry with you dutifully, and refer to often.

But I still have to get this damn catheter out and talk to Dr. Hunter (My Mayo Urologist) about what else might be going on. We get this meeting set up at 1pm, figure out that the bleeding must simply be due to the catheterization (he confirms that its not cancer returning in the bladder). Dr. Hunter mentions that if it keeps bleeding, come back in on Tuesday when he's in surgery and they'll figure out (and fix) the problem once and for all. Remember the cameras, tools and laser cauterizers, all at the same time? I do not prefer this option. I drink lots of water, and things work as they're supposed to up to and including the time of this writing. But if I start bleeding again, it will be a surgical solution.

In Rochester, Kevin and I stay in the Hope Lodge, which is a great service that the American Cancer Society runs. A facility across the street from the interconnected Clinics, it is huge and new-feeling, and offers hotel-type rooms to patients undergoing cancer treatment. Rooms are available (and free) as long as the patient meets the criteria for stay, and guests are allowed one "caretaker" (rooms have 2 beds). Each pod of rooms has its own kitchen area with refrigerator, full kitchen, etc. It is intended for long-term stays, and in fact there's usually a 4-night minimum stay. Mayo study participants (like I was supposed to be) get access to single-night rooms, though, so they were able to fast-track that for us and a multi-week approval process got reduced to a faxed request from Mayo, approved immediately. Oh, the power of drug companies. Of course, by the time we checked in, I knew I was out of the study. I did feel a tiny bit guilty about that. I had qualified, but no longer really did. Still, no one had a problem with it. I do have cancer, and am being treated at Mayo for it. Just not as part of the study. I will be able to stay there again if I'm having any other overnights tests in the future, though.

I also noticed that there is a note on the Hope Lodge code of Conduct sheet that warns that anyone abusing the kitchen privileges will be ejected immediately from the Hope Lodge and not allowed to return. There must have been a slew of kitchen evil-doers, there. Kevin and I dutifully throw out our refrigerated Italian leftovers from last night's meal, narrowly escaping an embarrassing, permanent expulsion from the Hope Lodge Rochester. Don't get me wrong about this. This is a great facility and an awesome service:  I was truly honored to be there, found the staff incredibly kind and helpful, and it was in a way comforting that I was among people who were like me. It was a safe place for a man or woman to have a shaven head, or to just read quietly in a soft chair in the corner of the common room. 

Tuesday

With the catheter out the day before, I had become a new man, fairly sprinting across intersections without looking both directions. I'm sure I mentioned that I'm still on a lot of pain meds for my back. Thanks be for brother Kevin, who looks out for such things for me. Today, Tuesday, we have planned a pelvic MRI, and an appointment to get the long, long awaited cortisone injections into my low back to fix the back pain that has been slowly driving me insane over the past 6 months and has essentially made me an opiate addict.

The MRI is scheduled for the "large-bore" scanner (to fit people who are 280# without feeling like they're being stuffed into a sausage casing). I walk into the room -- pre-medicated with Ativan for the anxiety and wearing a complicated 3-armed robe that is extra-tricky to put on when pre-medicated on Ativan. I quickly assess the situation.

"That's not a large bore scanner," I say, looking at the tiny tube, currently crammed with gear.

"Yeah, this is the regular one," The tech says.

He shows me a clipboard where the printed orders say "Patient is OK with using the regular MRI scanner". Which doesn't sound like something I'd ever say, even under duress. But that which is written must be obeyed. The tech doesn't know who wrote it. It wasn't the MRI team, is all he knows. I was specifically assured verbally the day before that I'd be in a Large-Bore scanner, I tell him. That's impossible, the tech says, because all of them are booked all day today and tomorrow. We could get you in on Thursday?

In the interest of science, and in the interest of not having to reschedule my back injections yet again, and in the further interest of not busting up an MRI suite, I voluntarily get stuffed into the tube. Luckily, since they need to scan just my pelvis, my head is at the edge and I can mostly see out. My arms have to hang above my head, which causes the shoulder joints to sear with pain after about 15 minutes.

My scan is 30 minutes and, if you haven't ever had an MRI, there is a good reason that they make you put in earplugs. It’s is insanely loud and sounds like the world's worst techno band, making thunking noises for 2 or 3 minutes at a time in defined patterns. At one point the machine sounded like it was saying "back back back back back back back back..." but very quickly, with a male, German accent. Later, it sounded like an American male saying "bladder bladder bladder bladder bladder bladder...", drawing out the "a"s extra long. But all of that could have been the Ativan talking as well. 

Less than 1/2 hour after the scan, I'm in another building getting my long-awaited back injections. The Mayo radiology teams have consistently been great at explaining what they're doing as they're doing it, and addressing any pain. There is one nurse assigned just to talk to me, who distracts me with an oxygen tube (sometimes directing the flow on my hair or my cheek or near my nose and mouth) and holding my hand through the worst parts. Both of the radiologists keep up a constant patter, asking me where I'm from, why I moved back to Minnesota, etc. The lidocaine injections sting worse than anything else, and after four only briefly painful shots, my low back joints are filled with some sort of magical drug that should reduce the inflammation for a few weeks at a minimum and a few months at the outside. Relief is felt almost immediately, which I why I'm able to sit at my computer chair and type such a needlessly verbose and excessively detailed blog post.

And we're done at Mayo, once again.

On the ride home, I'm addressing another issue via the phone: I mentioned the 3-way catheter and what each tube does. If you are an ER nurse and you forget to cap the tube that allows one to add saline to the system, the damn thing will leak. I awoke to a nasty surprise that Sunday night.

The following Monday, when I was off to Mayo, my mother had kindly stripped the bed and put all the bedding in the washer. My new dog Boo, a retired racing greyhound, clearly traumatized by watching her new owner shuffle around on Sunday in pain and smelling of blood -- and likely smelling her master's blood and urine on the mattress, now soils the stripped bed herself. Possibly this is a covering-up-the-scent-of-an-injured-member-of-the-pack, which I know that wolves do, and I have seen greyhounds do once before with another Greyhound that I later found out was dying. Or it could just have been high stress, or anger. She was not punished for it, as she was not caught in the act and it was discovered hours later. You can't punish a dog for a crime long after the fact. Their brains don't work that way.

But the fact remained that I now need to shop for, buy and move a new mattress. Tonight. When all I wanted to do was to sit on the couch and go to bed early. I spend a while trying to coordinate this and find people to help me move it (I'm not supposed to lift anything because of the back injections) until we realize that its just one side of the mattress, and it has been cleaned and dried as best as can be over the past couple of days.

Returning home, I flip the mattress over, resolve to keep Boo out of the bedroom for the near future at least, and plan to buy a new mattress this weekend. 

Wednesday

Today, at my local Oncologist’s office in Minneapolis, I meet with my new oncologist, Dr Straightshooter (so named for his ability to give me the info I need, even if it isn't good), get blood work, and start up Chemo yet again. This will be the first treatment of my 3rd series of chemo. I went through 3 rounds of chemo last year (a round is 3 weeks for me), 6 rounds in 2011, and this newest series is of unspecified length. I'll be getting chemo ad nauseum, and then some. I'll do a PET/CT scan again at Mayo (this time with no catheter, thankfully) after 3 rounds, or 9 weeks.

Its hard, as you might imagine, to be back in chemo and dealing with the flu-like aches, pains, tiredness, nausea and lack of appetite. At least the back is slightly better (and expected to improve day by day). My left femur, which I broke in a motorcycle accident in 1991, started hurting again in a brief, low-speed walk this afternoon. I had to sit on a retaining wall with Jen and found myself getting weepy. I am tired of all the modifications and I worry that one of these times the pain will just not go away, and it will be like that for the rest of my life. We discussed me getting a cane today.

I can and will keep pushing on, but it sucks that it’s so much effort and requires so many modifications. Not just on my behalf: Jen's work schedule (and subsequent important meetings) get scheduled around my chemo. Her employees don't come to work if they're sick, because of the risk of her passing it on to me.  Brother Kevin, a senior executive, dashes out of work on short notice, missing meetings. A couple of other old friends who live nearby are people I know I can count on to do the same. My mom sleeps on my couch sometimes. Jen worries. Boo worries. I hesitate to pull the metaphorical red cord on the wall unless I really need to. I had to do it twice in the past week, and that scares me.

Today, the day after chemo, is much as it ever was. I'm watching myself for new symptoms. So far, the nausea seems worse, and the tiredness more pronounced. Based on the literature, week two of my chemo round should be the "nadir" where my blood cell counts are at their lowest. This is when I'll be at highest risk of infection and will have my lowest immune function and therefore greatest risk of getting sick. Jen is already quizzing family and friends in advance of gatherings to make sure that there is no one sick expected to attend. Everyone washes his or her hands. I sometimes wear a mask, and certainly always do when I fly. I glare at people who cough or sneeze in public without covering it up.

I'm trying to slip into this routine again and finding that I know the ropes, but I'd guess it's a little like getting sent back to prison: you know the routine, but it doesn’t make it any easier the second time around. Or the third.