Good News, Bad News

I had a 2-day trip down to Mayo this week and -- as always -- it was informative. I had a PET/CT scan, met with my Mayo medical oncologist, Dr. Abbott (who works in conjunction with my Minneapolis medical oncologist, Dr. Straightshooter (also known as Dr. Way Better At Communicating with Patients than My Last Local Oncologist. Hence the switch, and the name.) The scans and meeting were on Wednesday, and the following day I had an appointment with a interventional radiologist, who did more steroid "facet" injections in my lower back, to give me some more relief there.

This is going to be one of those "Good News, Bad News" blog entries. Since the good news is shorter than the bad, I'll start there. 

1) I was there with my mom and brother, and it's always nice to spend time with those two.

2) We stayed at one of the nicest hotels in Rochester, the Kahler Grand Hotel -- the same place (so I hear) where the VIPs and Oil Sheiks stay when in town. The beds in our large, non-vip rooms were okay, though I didn't sleep very well. It had been a busy day Wednesday and there was much to process, mentally. 

3) I had two decent meals at my favorite Rochester Mayo-area greasy-spoon Greek/American comfort food diner, Mac's. Its *not* worth a trip just to Roch to go to Mac's, and probably not even worth a trip across Roch if you're in town, but its very convenient to the Gonda building (where all of my appointments seem to be). It's strange, but tasty, to get gyro meat in an omelette or mixed with hash browns, if that's to your taste. They do breakfast and dinner.

This time we did *not* eat at the Canadian Honker, which is like a one-off Perkins. The Honker is convenient to Mayo St. Mary's hospital, where I had surgery in fall of 2010. (The hospital and the "clinics" which is usually what people mean when they say they're going to "Mayo") are a mile or so apart from each other. The Honker is also not really worth the trip, but they do have their own gourmet "pleasonings" (basically salt, spices and MSG) at every table, and also available for sale. I have a bottle here at home that I got as a gift. Sometimes -- though not very often -- food just needs Pleasonings to bring it home.

So anyhow, that's the good stuff. Good company, a fancy-ish hotel, and gyros.

The bad stuff.

Well, part of the bad stuff is not all bad, but I hope you'll forgive me lumping the related items together.

To review, I have had 3 rounds of chemo (9 weeks) on docetaxel (or Taxotere), treating once every 3 weeks (which I do locally in Minneapolis), thats 9 weeks since I've been to Mayo. This means it was time for another round of scans to see where the cancer is at.

When it comes to having radiologists read scans, Mayo is lightning-fast. It takes a pro to understand and accurately interpret exactly when they're seeing). Many hospitals need 24 hours or more. Mayo does their scan reading in-house, and it takes usually less than 4 hours, and sometimes as little as 2.

I had my scan in the morning, which was a PET/CT Nuclear Medicine scan. The PET/CT is really not too bad in the spectrum of being-stuffed-into-a-tube-for-half-an-hour-in-a-really-cold room scans. I took some Ati-van (loraze-pam) prescription anti-nausea/anti-anxiety beforehand and was only marginally considering jumping out and running away by about 15 minutes in. The PET/CT machine bore (opening) is bigger than a standard MRI, and whereas MRIs are hideously noisy, the PET/CT is almost completely silent. So claustrophobia is less of an issue, here. But if you thought the airport body scanners were invasive, the PET/CT has it beat, hands down. It shows a detailed image of everything (inside and out) from your eyes to your thighs. Albeit in a series of thin slices than make it look like you've been through an industrial-sized Hobart meat slicer. 

So anyhow, the scan process was mildly uncomfortable and confining, but not too bad. Then on to breakfast (I wasn't allowed to eat anything pre-scan past 4 am (and at 4 am I was sleeping). And then we meet with Dr. Abbott a few hours later.

I was beginning to suspect that the news wasn't good, since he didn't launch into the radiologist's report and/or pull up the scan images right away. In general, I've had poor experiences getting bad news at Mayo. Dr. Hunter seemed to leave it to one of his residents, who always ended up doing a hatchet job. This is all still better than the late (as in, not my doctor anymore), un-great, Dr. Ungawa. He simply left the path report that talked in technical language about Stage 2 Urothelial carcinoma on the desk when I was initially roomed to get the test results. I can only assume this was an error, but still it's a huge and inexcusable one.

But Dr. Abbott is a pro: no printed reports left lying around, here.

He asks how I've been feeling, I tell him very tired, and we talk about that. We also talk about my recent pneumonia. After a few minutes we *do* get to the scan and the report.

The news, as previously stated, is not all bad. The docetaxel that I've been on has had some positive effect. Some of the known metastases have shrunk, indicating a "partial response" in those areas. 

But the alarming and unexpected news is that, at the same time that some areas have decreased, there has been simultaneous "disease progression". And not just increase in size of known areas, but evidence of new metastases in new areas, including new kinds of metastases. There is a largish looking "met" in the right lung, near where the pneumonia was. There has been evidence of spread to the lungs for 6 months or more, but it is clear that it is growing there.

There is now also clear indication of spread to 3 new areas: the liver.  Past that, there is indication (still uncertain, for some reason) of metastases in the pancreas, and also now signs of cancer in the bones in two locations. Finally, there is something odd going on in the bladder (where all of this started) that is also unclear as to what it means or whether it is cancerous. There are no tumors or metastases there, but there is a "circumferential" (all the way around) thickening of the bladder wall. My local urologist looked inside the bladder recently and saw no tumors or anything obvious, but clearly that all needs to be checked out more.

To be clear, even though I now technically have lung cancer, liver cancer, pancreatic cancer and bone cancer, this is all still considered bladder cancer cells (urothelial carcinoma). The drugs used to treat everything are still bladder cancer drugs, even though this seems strange to me. Different cancers area treated in different ways, and some (like mine) are just plain more aggressive than others. 

Dr. Abbott reiterated that all of the therapies available to me are "palliative and not curative" meaning there is no cure for this.  I know that people have reached stage 4 metastatic cancer and managed to beat it into remission, but they are clear that this is not a realistic hope for me. Surgery is still not an option, likewise radiation (as they'd have to essentially irradiate me from head to toe. Transplants, as I understand it, are also not an option as my cancer-filled blood would likely just jump into the new organ, ruining that one as well. And transplant surgeries are serious and dangerous even when a person is in the best of health. Which usually they're not, if one needs a transplant.

ANother disquieting piece of news was Dr. Abbott's analysis that some of the tiredness I've been feeling was not all the chemo, or even the pneumonia, but the cancer itself, as my body fights it more and more. It seems I've reached that point where I'm feeling the cancer itself, not just the drugs. He made it clear that its all up to me -- I don't have to go through with treatment. I assured him (and my family present) that I am very interested in continuing treatment. There may be a time where the combination of the cancer and chemo means that I'll likely need to take a break from all therapies for an unspecified period of time.

I will be changing chemo drugs as of this coming Tuesday. The new chemo drug is called Alimta (brand name) or pemetrexed (generic). On the plus side, the infusion (the actual IV treatment) is a shorter duration than the last drug. On the downside, the drug saps vitamin B, and early tests found that it killed organs because of it. My final indignation on Wednesday (after hearing the depressing news about the growth of the cancer) was a big intramuscular shot of vitamin B-12. This, in addition to another prescription that I will be taking for the duration, boost my defenses against the Alimta.

To me, Alimta sounds like a n antidepressant specifically geared towards people who have lost limbs. I think I should name  drugs on a freelance basis.But cancer drugs are tough. I'd probably come up with stuff like "Whoknowsia", "Worthatryadine" or "Betterthannothinga"

Feelings, etc.

I haven't really talked about my feelings about all of this, but in a nutshell I'm annoyed, disappointed and more than a little scared by all of these implications. Having cancer in now 4 organs (lung, liver, pancreas and apparently still the bladder... which I guess is really 5 organs if you count each lung separately) as well as in the bones now, has scary longevity and quality of life implications and assumptions. I'll likely be blogging more about my emotions, etc. over the next little while.

Chemo will pick up next week again with the new drug. I'm now very curious (and quite anxious) about the side effects of this drug.

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.

A lodge called Hope

Kevin here. M is sleeping.

We've had a long few days. Last week, our aunt Norma (mom's older sister, and an awesome lady who I loved very much) died, and we had her funeral. I don't know about other families, but in our family, funerals are a mix of sadness for the one who is gone and joy at sharing memories of them with the rest of the family, and of renewing our bonds with one another.

We got to re-connect with family we don't see often enough, and tell stories about all the dumb things we did when we were kids. I got a chance to go out drinking with three generations of the family - Uncle Terry representing the elders, and my second cousins Amanda, Brenton and Taryn representing the next generation.

We drove down on Thursday, and back up to the Cities on Sunday. M had an ER visit on Sunday night (due to internal bleeding from an unnecessary catheterization for PET/CT scan, which is annoying in addition to being painful and frightening), and so he got about an hour and a half of sleep. I managed to get more than that, mom and M having decided that since I was driving down to Mayo, I should be well-rested. I don't know if I'd describe myself quite that way, but I did get about six hours of fitful sleep. Go me.

Today's developments in the ongoing saga: M does not qualify for the cancer study after all, mostly due to the internal bleeding - the agents they are using limit the body's ability to heal, so bleeding is bad - so we're going to be doing chemotherapy back in the Cities after all. This is disappointing but not without a silver lining, as it takes out the drive to Mayo for chemo and scans. One of the things we were hoping for with the study is increased scrutiny on M's condition, and it sounds like we are going to get that, at least to some degree - the Mayo oncologist we met with today wants him back down here for scans between the 3rd and 4th cycles of treatment.

The other silver lining is that it dropped a boatload of scans and tests from the schedule, and let us move the cortisone injections for back pain up to Tuesday afternoon instead of Wednesday, which is good twice: one less long drive, and one day less to wait for a chance at relief from pain.

Of course, all the schedule weirdness meant that we got to eat lunch about 3pm. We tried Newt's (which has nothing to do with former Speaker of the House and current presidential candidate Newt Gingrich), which has won "best burger in Rochester" for 8 years running. It was the best burger we had had in Rochester, but then again, it's the only burger we have had in Rochester. I'm guessing the competition isn't too stiff.

Now M takes a nap, I get in this update and a little work time. And then we go find dinner about 9pm, I guess. Tomorrow is MRI and cortisone and the drive back to the Cities, and then later this week with Dr. Straightshooter and the beginning of "second line treatment" chemo.

Chemo, Drugs, Studies and More

While the reality of more chemo -- right away -- sets in, I also have other decisions ot make and new information to process.

The Drug

One of the things we learned at Mayo this week is that I have graduated from the platinum-based therapies (cisplatin and carboplatin) and into the docetaxel realm. This is a common "second line" chemo drug for people in my situation. Basically, this is the drug that is used when the other ones appear to reach the limit of their effectiveness and is used after the initial round of post-metastasis chemo.

I'm still educating myself on the side effects, but the most common ones sound like what I've come to expect from a chemo drug: tiredness, nausea, hair loss, loss of appetite, and temporary decrease in blood cell counts, to name just a few. I had all of those with both my past chemo series'.

Docetaxel can also cause loss of feeling or numbness and tingling in the extremities, and the irritation or loss of skin on the hands of soles of the feet. I had the numbness/tingling with my first chemo series when I was on cisplatin, but this most recent series on carboplatin had virtually no side effects in that area.

Rarer -- though scarier -- side effects include seizures.

On the list of the rarest side effect are: holes in the intestines, liver failure, and death.

I realize that these side effects lists paint a worst-case scenario, but you have to understand how difficult it is to take a drug that lists "death" as one of the possible side effects, however uncommon.

Treatment would be given once every 21 days (or one week on, two weeks off). I have a feeling that this long recovery time is due to the harshness of it.

The Study

There is also an offer before me from Mayo. They're inviting me to take part in a clinical trial of two new drugs. These would be given in addition to the docetaxel, also via an IV, One would mean an extra treatment (two weeks on, one week off) and the other would be the same schedule as just the docetaxel.

The control group at Mayo is given just the Docetaxel, meaning that the worst case is that I'd get exactly what I'd get from my local oncologist anyhow.

One advantage to the Mayo study is that I might get added benefit from one of the experimental drugs. The downside is that it could also be damaging, and some of the side effects aren't that well confirmed. It doesn't cost me anything (there is also no compensation for it) but I can feel like I'm a part of the cancer research process in a way that few get to be. Cancer Walks and such can be great for building morale and bringing survivors together, but actually physically helping researchers test a new drug that could be helpful to millions would make me feel like I'm a big part of the bladder cancer solution, as opposed to just being a statistic. And you know how I hate statistics.

On the downside, I'd have to drive (clarification: I'd need to be driven) down to Rochester at least once every 3 weeks (and possibly twice) for a very long day that would on some occasions include an overnight stay because I might have more tests the next day.

If I need to stay down there, I could stay for free at the Hope Lodge right across the street from Mayo. The Hope Lodge is essentially a free hotel that houses people undergoing cancer treatment. Its tough to get into, and there is a waiting list besides. Normally you need to be doing ongoing treatment and there is a minimum 2 night stay, but study participants are different. I am assured I could stay there any time I need with no problem. After a 12 hour day, just staying in Rochester would be preferable, I'm sure.

Its a big hassle to get all the way down there, and when you're already nauseated, spending 3 hours a day in a car is hell.

If treating in Rochester, I'd also need to co-ordinate (at the very least) someone to stop by and let Boo out on each of those long days, and possibly have someone prepared to pick her up and take her over night.

The advantage to doing the chemo locally, where I've done all my previous chemo, is that its 10 minutes from my house, and anyone can drive me. I know the facility and the people, though they're not perfect by any means. I spend more time at home, more time with my dog, and less time in a car.

At either location, its 100% covered by my insurance, so cost is not a factor.

Mayo ought to have top notch care during chemo, though their infusion center looks more like an ICU. It's clean, but not terribly inviting. There are about as many glass-walled treatment rooms with beds in them as there are infusion chairs. I guess they get a lot more patients who are in a worse way down there.

Currently I'm making simultaneous plans with Mayo and my local oncologist (to cover all my bases) and will have to decide by tomorrow (Thursday) which route I'll take. The Mayo study coordinator needs to know ASAP. We'll all be discussing this in detail tonight and making a decision by tomorrow morning.

The Back

While at Mayo, we managed to meet with an orthopedic surgeon, who ordered an MRI on short notice, and was able to read the results by the next morning. Basically, my back pain is a result of "arthritic changes" in the vertebra of my low back. It does not appear to be linked to the cancer. Injections into the disc (such as cortisone) are the therapy that is recommended, though (for various reasons) there wasn't time to have them done before I left Mayo. I will have to plan to go back down next week to get the shots. I have found some temporary relief by doubling (as per the new doctor's recommendations) the amount of Naproxen Sodium (Aleve) that I was taking. I now take two with breakfast and two with dinner. This is twice the recommended dosage. Based on the success of the Aleve, I have been able to come down a bit on my Oxy-tin, which is a huge relief in many ways.

So tonight will be a busy (yet hopefully productive) one, while we decide on the the best option.

The Family

In addition to all of this, I learned on Monday evening that an Aunt (my mother's sister) that I was very close to had just passed away unexpectedly. Needless to say, its been a hard week for everyone in the family.

The future (statistically speaking)

Today (and by today I mean for the last year and a half) I have been thinking a lot about the future. It surprises me that I'm not thinking about it constantly, but there are so many unknowns that its a subject that is easily avoided. In terms of longevity, life-expectancy, etc., there are boatloads of statistics that could make an argument for nearly any outcome. As previously mentioned, I don't really believe in statistics. Or rather, I get the concept and understand that they are helpful for allowing people to quantify things and put them in neat little boxes of expectation, but I maintain that statistics are irrelevant in my case. I will either live longer or shorter than other people in my situation. The likelihood that I will live precisely the average lifespan that is normal for people in my situation is unlikely. Statistically speaking.

When I spoke with my new oncologist (whom I shall call Dr. Straightshooter because of his ability to give the real, unvarnished facts if asked) he laid out the situation in a way that no other oncologist has before. I mentioned to Dr. Straightshooter that one of the major reasons I was changing oncologists is that I couldn't get Dr. Grampa to give me a straight answer to save his life.

Dr. Grampa would talk in parables and similes. When asked, for instance, how likely it was that I'd be back in chemo within the next 9 months, he said, "Well, I'd like to know how many times I'll have to mow my lawn next year, but there are some things we just can't forecast this far ahead of time." It would be cute and endearing if we really were talking about lawn mowing, but we're trying to figure out if I can continue getting the hell on with the rest of my life, to whit: taking a full 5 month semester of classes in fall without having a drop all of them for another chemo series.

My take on him is that he's very close to retirement (many of his parables had to do with playing the market accurately in preparation for retirement) and his aversion to being tied up in any malpractice lawsuits post-retirement. His strategy? As far as I can discern, his strategy for these next couple of years is to be as vague and noncommittal in person on any predictions of anything, and also to be highly pessimistic in his written reports. Also, do everything strictly by the book with no deviation. To the average patient (who doesn't read the written dictated notes afterwards) the picture would be very different from the story he paints in the office visits. Which involves nothing more than poking me in the stomach, feeling my neck, and jotting down my pain level. That way he can't be held accountable if it works out different than he said it would. Or maybe he's one of those doctors that is used to dealing with patients who don't want to hear bad news. And no one really does, but if the news is bad, I'd rather have it than nothing. And if the predictions are gloomy, I'd rather have them verbally than read them afterward in a cold, clinical, written transcript of a dictated report about me. 

I wasn't asking Dr. Grampa to sign a sworn affidavit saying that I would be guaranteed of a full semester off. I was asking whether it was likely that I would need chemo again within 9 months, which would mean that I could take some control of the situation and plan to do chemo over the summer. This would give me the illusion of having some control of my life, which would be good. Again, once we got that clear, he still wouldn't predict. He also really likes to say that he doesn't have a crystal ball. Which really made me want to buy one for him. 

So, Moving on to Dr. Straightshooter, I asked him a number of the same questions that I'd asked Dr, Grampa, and I did get the answers that I was looking for. Yes, they were not really positive. But I prefer having information than the opposite, even when it isn't positive.

I mentioned to Dr. Straightshooter that I knew almost nothing about what the progression of this disease would be like. Its an oddly lucky situation to be in that while I am at stage 4 (the highest it goes), the cancer has not apparently affected any vital systems. The cancer has spread to the lungs, but only on a small level and -- as Dr. Straightshooter put it -- there is a lot of redundancy in the lungs. This cancer also has a habit of spreading to the liver. That one scares me, as I don't welcome the idea of liver failure. He mentioned that the liver has a lot of redundancy as well. One of the most encouraging things he said is that, "we'll know before you know" that things have gotten serious. The spread will show up on scans, etc. before I start showing signs of jaundice, etc. It can also spread to the bones. That just sounds painful. As far as we can tell, it is not in the bones either.

There was a scary statistic that Dr. Straightshooter mentioned (and I'm actually kind of glad that no one told me this initially): when a patient is first diagnosed with stage 4 cancer (which was about 9 months ago) a common life expectancy -- after that initial diagnosis -- is about 2-4 months. Which brings us back to the fallibility of statistics.

Don't panic. I'm not going to drop dead tomorrow. Before anything like that happens, the cancer would need to affect a vital body system, and it hasn't done that. Hopefully it will not. There are no clear predictions other than saying that (statistically) it will, eventually. As it stands, it is conceivable that I could carry on for a good long time (which is annoyingly vague, I know) with chemo keeping things neutralized as much as possible. There is the possibility that chemo will eventually have a reduced effectiveness. There is the possibility that I will be too sick to get enough chemo to make a difference. There is the possibility that it will spread, regardless. There is also the possibility that a Airbus A-330, on final approach for MSP, will lose engine power and plow through my house when I'm sleeping. Though -- statistically speaking -- that is somewhat more remote.

Basically -- and this is what's really hard -- I need to be at peace with the idea that I may depart this earth well before my time. I also need to prepare for the possibility that I'll be here for quite a long time yet.

And this gets to the very heart of this quandary. I've been working since 2007 to be a teacher. I picked up my long-abandoned BA in '07 and finished in 2009. Then I went straight into a Masters in Teaching program to get my high-school English teaching license. This is something that I've wanted to do for 20 years or more, but got sidetracked by an career as a designer and writer. Which I enjoyed, but had for the most part burned out on. Right now I have 2 full semesters of school (plus a full semester of student teaching) to go. The problem is, I can't seem to be off of chemo long enough to actually complete a semester. 

I need to face the possibility that I may simply never be able to get enough traction to complete another full semester of school. Or at least not in the next few years. If I put that dream aside (which makes me very bitter) I may need to be okay with the idea of continuing do to what I do now. Which recently has been being under what amounts to house arrest while going through chemo and dealing with the crippling back pain. And, as a side note, unless I get the back pain addressed soon, I'll continue to be on so many painkillers that I shouldn't be driving to work, let alone actually working. So my options are that I can keep teaching classroom driver's ed. This is a known quantity, I'm good at it, I have a great boss and I like the work. Really, other than the fact that it's not what I had in mind for a career goal, there's nothing wrong with it. 

I also just went through the excessively laborious and needlessly-complex process of becoming a substitute teacher. Subbing is teaching, but its also highly-stressful. Some teachers prefer it over classroom teaching because there is no lesson planning and no homework to grade. To me, it sounds extra-hard mentally because you don't get to build a relationship with the students, especially since there are 30 of them and they know that it's party day because there's a sub. For this reason, subbing seems like about 90% classroom management. Great experience if you have a thick skin, but I'd rather teach. I'm pretty good at classroom management by this point, but it's my least favorite part of being in the classroom.

But I went through the process of getting the license anyhow. Partially so I can say that yes: I'm a licensed teacher. Of sorts. Its a little like choosing between dropping out halfway through your BA or getting an AA. It's a half-assed measure that is nonetheless better than nothing at all.

So, I got the sub license partially for me, so I can look at it and remind myself that I can be teaching in any Minnesota school where there is need and an opening. Albeit for a day. And with the understanding that the students and I won't be able to get to know each other, and that the students will most likely be trying to make my life hell. 

The substitute teacher license could also help me when teaching driver's ed. Sometimes we have classes inside schools, and the sub license would make me more attractive to the schools. At very least, it should mean a raise. But, perhaps oddly, teaching driver's ed already pays a lot more than subbing.

With spring semester approaching, I have a decision to make. Take classes (which will cost about $5,000) and face a decent (statistical) probability that I'll have to drop them or take incompletes. Or, take the time off and teach. And travel as I'm able.

Right now I'm leaning towards not taking classes. In an odd way, this is taking charge of my future. Or rather: filling it with fewer opportunities for disappointment. Is that sad? I can't really tell. It feels a little like giving up and a little like being a realist.

When I go down to Mayo next week I'll be able to speak with all 3 of my docs down there. Hopefully (but not necessarily) I'll have some predictions as to what the next few months will be like. Whether it's back to chemo or take a breather is unknown. Regardless, I still have some decisions to make in the next week.

And now for something completely different

Blah blah blah blah blah-de-blah bah back pain. Blah blah blah blah Mayo blah blah blah blah blah Oxy. Blah blah blah-de-blah blah blah blah Acupuncture blah blah blah blahbidy blah. Blah blah sleep blah blah blah blah-de-blah blabidy blah neutrophils blah blah blah blah Ambien blah blah blah-de-blah blah.

Boo

Is painfully cute! 

And that's the news.

Free Beer and the Answer to All of Life's Questions

Not really. Just checking. Some of these posts -- and it seems to be the ones with the most provocative titles -- have been getting more readership than others. I have noticed that my post entitled "The Axis of Evil" has been getting a lot of love from Russia, and "The 20 mg Solution" (and a lot of my posts about Oxy), have been getting a similar amount of attention from Colombia. And I'm huge in Denmark, Romania and Slovenia, for some reason.

Likewise, an older post named "Psychosomatosis" continues to be perused regularly. Perhaps it's a shoegazer-death-jam band name or the name of a gripping, grocery-store mystery novel that perhaps involves someone waking from a coma... only to name the person that tried to kill them! 

For that matter, I also think "The 20mg Solution" would be a great band name. I might still use that one myself.

I can't see who's reading, but I do have some stats that give me some interesting information about how people access the blog in general. Safari (a Mac browser) is the #1 browser used, with Explorer and Firefox close runner-ups. Chrome (which is what I use, though I have excluded my own vists from the results) is a distant 4th. It's a great browser, people. Really. Firefox? That's so... 1998. A handful use the Opera browser, which is an off-off-off label browser that is simply horrendous. Whoever that is, you *really* need to switch to a better browser. 24 visits came from an a browser named Glue. I have no idea what Glue is.

Windows is the dominant operating system used, and not surprisingly. Windows accounts for 80-90% of all computers used worldwide.  This means that only 10-20% of worldwide computer users have any sense whatsoever. Oh no he di-int. Oh yes he di-id.

Desktops are still the primary means to access the blog. But desktop Linux lags well behind the relatively small numbers of iPhone, iPad and Android users. There is just 1 recorded access using a Samsung operating system to access the blog. Maybe that's my mystery fan from Belarus.

Drugs, and Conversations with Dr. Hunter

The pain has been ramping up to an almost unbelievable degree for me. 2 weeks ago I was on my 10mg 2x a day (20mg per day). Last night Jen and I nearly headed to the ER, but more and more opiates took care of the pain. As of today, I've managed to creep up to 20 mg 3x per day -- 60 mg total, or three times what I was one a few weeks ago. Likewise, the remaining pain is twice as bad as it was, even after the pain meds. At this point I'm feeling the pain constantly. Its like a sedative, and waking up is more like coming out of anesthesia than anything else. It is fixing the pain for the most past. I feel like now I'm at the pain level of people who live with some soreness in their backs. This level of pain management simply cannot continue, though. Right now I've crossed the line back into the "should not drive at all" category because of the pain meds. The side effects are of course ramping up as well, and I'm starting to develop nausea from all the Oxy-tin. I'm starting to feel like I'm in a room with big spiky walls that is is closing is, with decreasing options: pain, or soupy-headed dopiness. Today they may have converged: I have both.

I have an series of doctor appointments set up next week at Mayo, where I'll see a Urologist, an Oncologist and an orthapedist. I just talked with Dr. Hunter (my urologist, who is my primary Mayo doc) and he said that the orthopedist will likely need to request the scans she needs when I meet with her, rather than me being able to do them the day before with my other scans. Dr. Hunter said that rarely will the pre-order scans, since they're not totally sure what they will need or want without meeting with me. This makes sense, though it just isn't what I want to hear. What this means is that I will need to be back down to Mayo soon after our initial meeting to get an MRI (I could also do this locally to the Cities, I assume) and then meet with her again. I had been banking on the idea of finding some relief at this meeting, or at least some direction, but now it seems that I'll have to wait yet again for a different type of scan. 

Dr. Hunter mentioned that if the leg pain is tumor pain, they could do some localized radiation in that area. This might provide some relief, I would hope. 

What has me losing sleep right now is only partially the pain itself. Its also the thought that I may never get out from under it again.

People have asked, but I don't have a Caring Bridge site. Perhaps at some point -- when/if I'm in a state where I can't really take care of myself -- I may break down and set one up or something like it. But I have a feeling that I will resist for as long as I can. I'm just too independent, and I can pick up the phone to have Jimmy John's deliver me a sandwich, or to have a housecleaner over, or have a guy shovel my walk or mow my lawn easily enough. I may have to admit defeat at some point, but hopefully not anytime soon. 

Right now my brain is exceptionally fuzzy because of the pain meds, and my eyes don't quite focus correctly. I have no hunger at all. Please don't take it personally if I'm more forgetful than normal. Reminders are a great idea, and putting things in writing (email, text, etc.) is always best. 

There's really no chance that I could do my grad school classes (especially two intense classes than both involve teaching clinicals) with this level of pain and medication. And my classes are scheduled to start on February 1st. I have until then to decide if I'll cancel classes or not, but I'd rather have some idea beforehand. It may very well be down to the wire.

Dogs

One bright spot recently is that I've been auditioning new dogs this week. This sounds odd to put it this way (and its not like I'm making them read a selection from Shakespeare or anything) but its a process of figuring out who will best work with me and my house, my life and schedule, who will get along best with Jen's cat, etc. Losing Kaia was exceptionally hard, and tougher still as it came at an extremely bleak time for me. Its been incredibly difficult to have an empty house these past months.

A few weeks ago I volunteered to help ferry a crop of 6 new greyhounds, newly retired from the track, up to the cities. In that vanful of 6 excited and bewildered dogs (everything is new for retired greyhounds) I found two that I felt would be a good match for me, and I was able to observe them for a few hours on the trip back. I met one -- a big shiny, black, mellow, 3 year old boydog -- on Wednesday, and another -- a smaller, clownish, quiet, lovey-dovey, mostly-white 7 year old mamadog -- last night. Currently, the mamadog is my clear favorite. Like Kaia, she was a champion racer and then went on to raise 4 litters of pups. I'll have more information to share here once I make the final decision, but I hope to have a new dog-companion buy the end of the weekend. No one could ever replace Kaia, but it would give me a wonderful added daily purpose to have something else to focus on.

One interesting note: The mamadog has an ancestor in common with Kaia, and also an ancestor in common with my dear departed Woody, who I lost back in 2001 (purebred racing greyhound lineage is clearly documented for each dog back to the year 1820). Strangely (or perhaps not) I can see elements of both dog's personalities in the new mamadog.

Friday (?!)

Has it only been one week since I got the biopsy results back and was told the Big News? Seems like a huge amount has happened since then.

Last night was difficult. I was out of Ambien and decided (partially for lack of other options) to try sleeping normally. Bad idea. I ended up laying awake until at least 3 am, then slept fitfully until about 8, waking up well before my alarm (set for 9). I was up at least 10 times during the night. Called Dr. Larry and got him to give me a scrip for another 30 Ambien first thing.

Sleep, it does a body good.

I have been getting notes from other Cancer Survivors that I know on FB with unusual little tidbits of advice, all of which are fascinating and helpful. I think this is the reason for support networks. People can pass the torch, so to speak, helping out other Brothers and Sisters with their own experiences, observations and revelations.

SL, a FB friend and Cancer Survivor, recommended that I take strong smelling cleaners, etc out of my house. This was interesting timing, since I had already started to realize the need for this. One of the questions Dr. Frodo (the current oncologist) asked me yesterday was whether smells bothered me now. I thought about it for a second and was surprised to find myself answering yes. When R and I were at the Apple store the other day I was overwhelmed by what smelled like some sort of new brand of Axe body spray gone very wrong: the entire genius bar smelled like armpit. Looking around, I eventually found the culprit: one suburban knowledge-seeker's unfortunate bag of leftovers from California Pizza Kitchen. I have also noticed that the last veggie delite sub I had from Subway (usually a reasonable, quick, healthy-ish option) tasted like bleach and chemicals to me. This morning, my toothpaste tasted incredibly strong and the smell of soap after my shower was not unpleasant but almost overwhelming, as if I was holding the bar of soap to my nose constantly. My dog's fur smells faintly like cologne or perfume, but not my cologne. Possibly I'm just smelling the last person other than me that petted her. Maybe she's seeing someone else on the side.

I have been working the phones again this morning. I have decided to go ahead and schedule the surgery with Dr. Ungawa for the week of the 5th, if possible. I haven't met with Mayo but even if Dr. Hunter recommends someone else, I need to get on the schedule with Dr. Ungawa. The procedure is a 2-surgeon procedure so scheduling is tricky. I also need to get blood tests done at Dr. Larry's office today (CBC, LDH, possibly one more), pick up the Ambien from the pharmacy, meet with my brother, and then I want to see J tonight before she heads out of town tomorrow morning for a week-long trip that has been planned for nearly a year.

Despite all of this drama going on, the 4th of July weekend will be happy, social, and filled with gigs. If all goes as planned, I'll be in surgery on Monday or Tuesday, July 5th or 6th, so I'm living it up while I'm still at 100%. We are playing on Thursday (mostly likely, still to be confirmed) in Stillwater, and on Friday, Saturday and Sunday at CONvergence.

I haven't really talked about my trial in Boulder, which is scheduled for mid-July. This is the long-awaited (5 years) lawsuit against the dude that hit me on my motorcycle in 2005. I may be still recovering from my surgery when I fly out for that. Either one of these things would be enough excitement for the summer, but to have them both hit the fan in the same month is a little much.