Wednesday, August 31, 2011

Chemo Dog

People say to sick people, "Let me know if there's anything I can do," and I know that sometimes this is just something we're programmed to say to be nice, but sometimes people are actually looking for things to do. I've started thinking of a few things that I do honestly need help with, and will post them here and let people volunteer if they're so inclined. This avoids the awkwardness of giving someone something to do to help (who maybe didn't really *want* anything to do -- and certainly no-one *needs* to do anything, this is my life, after all). It is also genuinely beneficial to me. Plus people can do as little or as much as they want, and different things fall to different skillsets. This first item is something that I know nothing about, regardless of how good or bad I happen to be feeling.

Thing #1: How do I get my dog registered as a Comfort Dog?

When I was in the hospital this last week, the staff mentioned that dogs are only allowed in to visit if they're comfort animals. These are dogs that essentially just go from room to room getting petted by those who wish a visit. I know that Kaia would be amazing at this and would love it (as would nearly all Greyhounds.) I would also personally benefit as I'd get to see my own dog.

How does this work? Could I do this with Kaia? What are the steps?

Related thing #2: How do I get my dog registered as a Service Animal?

When I was at CONvergence, a local Science Fiction Convention, I happened to walk by the 'con HQ and overheard this conversation:

"She needs to have this dog here with her," The man explained, pointing at the scruffy dog in the woman's arms. She was dressed as a Star Trek bridge officer. "She has diabetes," He continued. "This is her diabetes dog."

I walked past and sadly did not hear the rest of the conversation.

I remarked out loud at the time (mostly to myself) "Diabetes dog? If she gets to have a diabetes dog, then I get to have a chemo dog."

Past the fact that I can't imagine exactly what service a diabetes dog could render (other than barking at people who try to give her sugar) I'd need to come up with a good, plausible reason why I could have Kaia with me as often as possible that the state (or whoever) would accept. I missed her terribly this week and she is very calming for me at a very stressful time. Is a dog that is psychologically comforting allowed? She gets protective when I'm feeling poorly, but she can't exactly call 911 for me. What (honest and applicable) reason could I use, if any?) DIes it need to be a physical reason? If so, what reason could we come up with? 

As a bonus, we know that Kaia's used to wearing a tabard, anyhow. (See actual pic of Kaia, walking out to a race -- with Photoshop Modifications, of course).

Tuesday, August 30, 2011

Headed Home

It's official: they're working on the release orders now, and my mom is coming to pick me up. I'm looking forward to a world where things don't beep constantlly. Tomorrow: chemo week 2.

Parole Board Hearing Imminent

I met with Dr. Bonzo, the Palliative Care Doc, this a.m. (I'll be working with her ongoing, so she gets a Name). She likes the progress and may even reduce the 'Done from 15mg every 8 hours to 10mg every 8. She gave her approval that I be paroled today from Abbot. Dr. Grampa, my Oncologist, will make the final call but I'm confident that he'll agree. Just waiting on a visit from him now. Meanwhile, the 'Done makes me very tired, so a nap is in order. Will eventually need a ride home, also!

Captivity, Day 6

Its hard to believe that I've been in here at Abbott since Friday trying to nail down a solution to the pain situation.

I was also realizing last night that the pain is only a small piece of the puzzle. I had almost forgotten that I'm in the middle of Chemo, with another treatment scheduled tomorrow. The back pain has been extreme and -- at times -- all consuming -- but as it improves I also need to remind myself that I'm getting farther and farther from my most recent chemo treatment. In this way, two things are simultaneously improving: energy following chemo and mood as pain lessens.

Having Jen, Ray and Steve over to my (thankfully, finally, private room) last night, I realized I was feeling pretty good. The pain was gone, but also my energy had bounced back nicely from the chemo.

With chemo treatments once a week, my blood cell counts wil be back close to normal by the 7th day, at which time I get another treatment and they'll knock me down again. Again and again. Which is just how it goes.

So, in all, I'm feeling pretty damn good today. The pain seems manageable and my energy is climbing back to normal. In a way, this week-of-pain has distracted me nicely from the chemo, to the extent that it had gotten lost in the shuffle. As I was feeling like I had more energy last night and feeling like I wasn't really ready for sleep at about 10 or even 11, I forgot to factor in that I was also feeling more energy as my cell counts bounced back as well.

I am hopeful that I will get out today. I have chemo scheduled tomorrow (wednesday) and I'd like to have a chance to have a fairly normal evening at home (see Jen and see my dog, etc.) before the next cycle begins.

The Methadone appears to be controlling the pain well enough. the pain is probably sitting at a 1 or a 2 now. I just took my 3rd every-8-hours dose of the 'Done, and I'm intentionally waiting an extra hour before taking the Dylotid (which I could have taken anytime after 4 am. I'm trying to be scientific and separate the effects of each, rather than just automatically popping both as often as I can if they're unnecessary.Plus, the Dylotid makes me nauseous, and the 'Done doesn't. they both make me tired, I'm learning.

With the pain now seeming managed, I'm going to lobby heavily for getting out of here today. Ultimately, this is up to the palliative care (pain) docs, and I'm not sure when they're going to stop by today. The chemo treatment that I'm scheduled for tomorrow is just across the street (literally) and there may even be a skyway or subway. Or, since this is the oncology floor they may even be able to do it right here in my own room. But I'd rather sleep in my own bed tonight and make the 5-minute drive back tomorrow.

p.s. cold, fresh tofu spring rolls for breakfast are way better than anything the hospital has on the menu. You may disagree, but you'd be wrong. I'm just sayin'.

Monday, August 29, 2011

Huh. Methadone? Who knew?

So far the Methadone (a surprisingly innocuous looking brown tablet designed as a heroine substitute but without the high) appears to be the Silver bullet. It's early yet, but I've passed on Dylotid twice now, as my pain is at a surprising 0. That's even with bad posture, sitting up in bed.

The nurse was just telling me that the M doesn't peak as severely as others painkillers can. And all IV painkillers can lower blood pressure (causing a bit of a crash): This is in pill or liquid form, eliminating that problem.

The Dylotid also causes me nausea, meaning that I need to pop *another* pill to kill that. Taking the Dylotid as seldom as possible means I take *two* fewer prescriptions, which is good.

Both the Methadone and the Dylotid are opioids, so they will stop up your GI system like a Boston subway line at rush hour. Precautionary measures must be taken!


the pain is back, rating about an 8.

A hour or so ago I met with the palliative care docs, the docs that specialize in pain.

The mega-doses of painkillers they've been using are having less and less effect. They're authorizing upping my Dylotid (not sure how high yet) and are replacing my phentanyl with methadone. This drug is (among other things) used by heroine addicts as a "safe" replacement. Hopefully this will give a clear picture of how powerful it is.

This ain't no way to live. I'm hoping with all of my might that the rest of my life will *not* be a balance between mind-numbing painkillers, and mind-numbing pain.


I just got done taking my meds at about 12:45am

Partially for the edification of any following along here, and also for my own record-keeping, here is my current med-roundup and pain management plan:

75mcg Fentanyl patch (72 hour). This (new dose and larger patch) takes up to 16 hours to start working, so it will come online at about 9:30 am Monday.

3, 2mg Dylaudid oral tablets, every 3 hours. Regardless if there is pain or not. This is to keep a base level in my system. This amount may be reduced whenthe Fentanyl is try online.

The Dylaudid causes drowsiness, nausea and (for me) itching, which i was reminded of by my body a few minutes later. I called the nurse back in, and to counteract the itching, oral benadryl and Ativan (qntinausea) were given. To counteract the nausea, either oral Ativ

NOTE --- at this point in the commentary I felt overwhelmingly that I was going to vomit. I spent an uncomfortable few minutes in the bathroom until the feeling receded.

In the past, I have taken the IV Ativan (antinausea) which works like a charm. But I/we are trying to work towards at-home solutions. Next time the meds are due, I will request that I fake the Ativan/antinausea pill maybe 1/2 hour beforehand.

It's a recipe that is taking a while to perfect, but I think it will be finalized by tomorrow.

A lot of this is being driven by me, though trial and error and by just listening to my body. I've had to insist on the the scheduled Dilaudid, as an example, and also pushed for the higher dosage of Fentanyl. If you state your case and give reasons for it, your docs should listen. It's my body, and I know it better than anyone else.

To sleep, perchance to have really odd dreams.

*** update: 5:20 am: with my 3:30 am dose I took Zofran (antinausea) 1/2 hour beforehand and It grea. No nausea! ***

Sunday, August 28, 2011


Hospital roommates who can only (apparently) sleep with the television on and blaring make me wish for some Iocaine powder for their lime Jello. Or an ejection bed. Luckily I have some hearing loss and I have earplugs.

I am confused, do I quality?


Saturday, August 27, 2011

It's happy hour somewhere!

My and my AfroDizziac robe.

Hospital Time

As I expected they might, Abbott ER did their own CT scan (they didnt have the recent MRI and oncology scans in their systems). What surprised menis that the didnt find anything else going on, such as diverticulitis, intestinal blockage or anything else that might be causing the pain. Dr Grampa's guess that the pain was linked to tumor pressure (and that only shrinkage via chemo mightt be my only hope to stop the pain on it's own) seems to be right on.

Abbott bumped me upstairs to the hospital last night with the plan of nailing down a pain regimen that works, under close supervision. Major changes so far include loads of IV antinausea and pain meds, and replacing my 12mcg Fentanyl patch with a 50mg patch. The pain comes
And goes. I was feeling no pain at all last evening, but right now it is wheedling it's way back, waiting for a recent dose to kick in.

So far I am very pleased with the oncology/cancer floor at Abbott. I may be here it a day or two until the get the pain under control and have a plan that works.

My mood is not perfect, but at least I can think about something other than the pain.

My dog is safely with friends, also, though I am told she might be allowed to visit!

Friday, August 26, 2011

My Friday night? ER.

The back pain was too much, I realized that the ER was the only place that could help. Hopefully they'll do more than just give me different drugs to cover up the pain. If it's fixable, I want it fixed -- 'cause it's getting harder to function. Mom and Jen are here with am at the Abboott ER.

Something new

So finally the barfing begins. First time in over 30 years, and it never happened during chemo last time of course. It tasted like pills and vitamins. I'm working on eating a banana now, slowly. Since I'd jut taken annoy about 2 minutes before, I have a feeling I'll need to retake that one.

Back pain up to about a 9. I think I need to get a base level of the oxy in my system. I felt totally pain free for a couple of hours yesterday, I may have falsely attributed that to the Fentanyl, but I think it was the combo that was the key.

Thursday, August 25, 2011

Chemo +1, Drugs, More Ranting

It's strange to be back here again -- in chemo land, and my reintroduction to the infusion center yesterday was emotional and hard.

Yet again, I get snubbed by the Breast Cancer Army. In the middle of my treatment I see a woman come in to the infusion center with her head (clearly shaved) covered with a hanky (I'm sure there's a better term for this but this is all I can come up with at the moment). She has three proud female trends with her. I'm in an otherwise abandoned row with my mom and brother. They take one look at me, notice my lack of breast-cancer-ness and lack of female-ness, and move on to another, much more crowded, row. I'm not exactly sure why this is, but all of the breast cancer survivors I've met in the infusion center (and, to be fair, more so their friends who accompany them to treatments) are very snobbish an appear (for some reason) actively anti-male. I realize that breast cancer is a female phenomenon, but the most important part of this is *cancer*, which does not discriminate based on gender. I have said this before, but I feel the burden of having an odd and obscure cancer that is not one of the "popular" cancers and does not have bumperstickers, ribbons, walks, keychains, coffee mugs, etc. Maybe I am just overly sensitive, but it only serves to make me feel more alone.

My back pain has been my major compliant and has been getting worse of late. The only time I've found total relief from it is to quadruple my prescribed dose of oxycodone. Whichbmeans im taking 10mg Oxycodone and 650mg acetominophen every 2 hours. I have only done this 3 times, as an experiment to seen if it would make it go away. This makes me worried about eventual addiction, as you can imagine. Dr. Grampa, the oncologist, ramped up the painkiller to a Fentanyl patch (12 mcg/h). This is like a nicotine patch (I assume) and is a small clear patch that goes on the skin and dispenses a controlled dose over 72 hours. I put it on yesterday afternoon and its working now. I take this with my oxycodone, but at least now I don't need to exceed my prescribed amount. I'm still flooding my body with opioids, of course. Another down side of this is that I cannot safely/legally drive until I am off of these, which may be a few weeks. Dr. Grampa believes that it may be the tumor causing the pain, and if that is the case the only hope of fixing the problem (as opposed to simply covering it up) is through chemo, which will (or should, anyhow) shrink the tumor.
Right now I'm just overjoyed that my back is only slightly sore--as opposed to a constant, all-consuming knife-blade in my lower back) so the chemo side-effects (low level nausea, lack of appetite, tiredness and deadened taste buds) are minor.

The opioids make me clumsy and liable to drop things, but I'm not a juggler so that's not much of a loss at the moment.

My spirits are returning with the decrease in pain. Let's hope that the lack of pain and good spirits are a trend and not just an anomaly.

Wednesday, August 24, 2011


I had an appointment this morning with my oncologist. It was very like a bad dream when they said they had me scheduled for chemo afterward. I'd been planning to start next Monday, but their plan was different from mine. This was not at all what I was planning on doing with my day. I agree that it is good to start as soon as possible (and I've been trying to hurry this process up for a month or more) but this came as a shock. It all begins now. The first of the drugs is already running. No, I am not excited. This is not like the first day of school, where there is excitement mixed with the trepidation. It's a sign of how serious this is that I'm back in this place. Pain, discomfort, tiredness and nausea are my new normal until further notice.

Saturday, August 20, 2011

Appointments, Insurance (again) etc.

I continue with my chemo-prep planning.

Next monday I have an appointment with a new chiropractor (that takes Medica). The great thing about my (hideously expensive) self-insurance plan, Minnesota Comprehensive Health Association -- with Media as my chosen provider -- is that eventually everything becomes free. I pay about $280 a month, and after I have hit my $3,000 out-of-pocket annual maximum, everything is 100% covered. Prescriptions, doctor visits, surgery, chiropractors... they all cost $0.00. This means that I end up paying a little over $6,000 a year, in the end, but last year my total bill would have been about $150,000 -- so its still a big savings.

Some have asked, so I will clarify: this is not Minnesotacare (which is our Minnesota low-income insurance plan that we've had in place for years. So there, rest-of-the-country-that doesn't-think-everyone-should-have-health-insurance.

Minnesota Comprehensive Health Association (MCHA) is not low-income insurance, it is high-risk insurance. They only way to get on MCHA is if you have a pre-existing condition that makes you ineligible for other health insurance. Cancer qualifies, FYI. I was on MinnesotaCare (that's the low-income one) but then my financial situation changed and I had also outgrown MinnesotaCare, which only covers $10,000 of surgical benefits. Those who believe that the poor should not have health insurance will still be happy to note that at least the poor are not getting very much coverage under MinnesotaCare. Also, I dropped MinnesotaCare because I wanted to go to Mayo, and last year my MinesotaCare provider (HealthPartners) didn't cover Mayo. This year, 2011, they do. It all changes year-to-year.

So, I'm on MCHA. Its pricey, but it is literally my only option. Well, I could get a job in Corporate America or move to Canada. But corporate America wouldn't like the fact that I'd need to take 2 months or more off every year for my cancer-related junk, and Canada just isn't very interesting. So, until the US nationalizes health insurance -- or I turn 62 and qualify for Medicare -- yours truly will pay $6,000 a year for health coverage. Its still a net savings over what it would cost, but its a screwey situation.

I also have an acupuncturist appointment scheduled next Tuesday. Acupuncture -- which is perhaps the most helpful single thing that I found during my chemo last time --  is not covered by Medica. So I'll spend about $50 a week for the next 2 to 4 months getting those treatments. Its worth it for me.

I also have an appointment with Dr. Gesme, my once and future Oncologist, to talk about everything and actually, hopefully, finally, perhaps get a chemo plan scheduled. I'm shooting for Monday the 29th to begin chemo.

Many have volunteered to join me for Chemo, but its an oddly personal and vulnerable time, as the patient (me) doesn't feel very presentable, isn't usually in a good mood, has tubes running out of them, is sometimes in pain and uncomfortable and has a tendency to fall asleep. Some have come along before and looked extremely uncomfortable (there are some very sick people in the infusion center, my cancer brothers and sisters that are at varying stages of their treatments). Its also most of a full day commitment, as treatments are about 5 to 6 hours. I appreciate the offers greatly -- truly -- but I'll likely just call on family.

Again, I wait -- the sooner I begin the sooner it will be done.

Friday, August 19, 2011


The port is in (as previously noted) and I am now left with two bandages on my upper right chest. The smaller one is apparently from an incision that helped to guide the catheter into my vein, the bigger one is from the actual installation site. I have no pain from it unless I bump it, but since there is no constant pain to remind me of its existence, it makes for an ouchey night, as I turn over.

Ever had oxygen and felt like you could smell the tubing smell afterward for a bit? I have that now. I was on O2 yesterday for a bit during the procedure -- but I attribute it to the fact that there is a rubber/latex/silicon/something tube in my vein, and when I exhale, I can taste it. Kinda strange.

I got a call from Dr. Hunter, the Mayo Urologist that I've been working with for a year or more. This was just a followup call to answer any question that I had, and I asked him some hard questions. He is one of the world's leading experts on urothelial carcinoma, so I figured that he would have some ideas.

He was reluctant to give life-expectancy estimates. Everyone is. Partially with good reason, as people could fixate on this number. He did say that I have some good things in my favor: usually this disease affects only people much older than me, so my (relatively young) age is a plus. Also, I have good renal/kidney function, which is another plus. I also responded well to chemo before, which is another plus. 

One negative is that I had chemo and it *didn't* make it go away forever. It chased it away for about 9 months. That tells them that the chemo should make it go away for awhile, but it is unlikely that it will make it go away forever. Dr. Hunter stated that -- at some point -- the disease will progress. He is reluctant to give life expectancy estimates, but the best he was willing to say is that my lifespan will now likely be measured in years, not decades.

I know that none of us have any guarantee of a long life. People say, "well, you could get hit by a bus tomorrow!" True enough. But if learned individuals told you that it is very likely that you will get hit by a bus tomorrow, and that you fall into a category of people that tend to get hit by buses frequently, would it change your outlook?

I know, there is no sense harping on it and focusing on the negative. Dr, Andrew Weil once said something that stuck with me: all healing is self-healing. If a patient decides they're going to get better, they will do better than a patient who decides that there is no hope and that they're not going to get better.

My problem a the moment is that I'm not sure that *I* believe that there is a hope. I've been told some very scary news. I need to get my head into a better place and start to believe (rather than just say) that I have a chance. This is perhaps my biggest hurdle at the moment. I'm working on it, but it may take a while to get to that place.

Thursday, August 18, 2011

Procedure Done

I'm all done with the surgery at Abbott and my mom and I are waiting in recovery.

The porta cath procedure is uncomfortable but livable. I'm used to (and spoiled by) Mayo and I kept focusing on Abbott's stained ceilings, weathered nurses, very young doctors and the disorganized feel of everything.

The picture is the "Power Port" porta-cath device, or one identical to it, anyhow. It's about the size of a thumb. The long white tube was threaded into an artery in my neck, and the big purple thing is under the skin near my right collarbone.

Once the incision heals, it will be completely invisible beneath the skin. The domed area is where the needles and IVs go, and the 3 bumps can be felt through the skin to orient the needle. Infection is the biggest risk now, and I'll need to watch it closely for the next week or so.

Port O' Cath

This morning I'm off to Abbott Northwestern to have a Porta Cath installed. I think "implanted" is the approved nomenclature, though "installed" seems more appropriate.

This is a metal and plastic device that will go underneath my skin in the my upper chest area. It will allow the nurses to have easier access to my bloodstream when taking blood and giving me chemo.

I didin't have this done during my last chemo (it wasn't discussed until about halfway through).

This was part of the chemo that I dreaded the most: the (sometimes lengthy period) spent fishing for a good vein. The longer chemo goes, the harder it is to find a vein. Other than the needle sticks before and during treatment, the actual chemo process is just a boring 5-hour wait in a chair. It more like having your hair colored than anything else. Except you don't get your hair colored. Oh, and it costs like $6,000 each time. Now, when I go in for chemo, there will still be a slight needle sting when they take blood, and another when they start the chemo IV, but they'll be right in, every time.

Once the porta cath incision heals, it won't be visible above the skin, and it will be (hopefully) eventually removed once all this is (hopefully) over with. I'll be only lightly sedated, and the procedure is just an hour or so, though I am still nervous when anyone is messing around with my bloodstream near my heart.

I know that Abbott Northwestern is commonly regarded as a pretty good hospital locally, but my confidence is shaken at the moment. Mayo clinic -- one of the best medical institutions in the world -- messed up big time with me twice recently. They should have scanned me more often, and they should have been using PET-CT scans, not MRI and chest X-rays.

Anyhow, wish me luck and more soon, tomorrow at the latest.

Wednesday, August 17, 2011

How I Am Doing & Other Thoughts

I get a lot of questions that go something like: "how are you doing?" "How are you holding up?" etc. These are always well-meant, but I believe these questions fall into 2 basic categories: rhetorical questions that don't need an answer, or polite inquiries that also are not expected to be answered. I know these are well-intended, but I am essentially holding up as as one might expect. Sometimes shitty, sometimes well. I know that polite society tells us that my response to this question should be "Good" and not to elaborate further. But, in case people are actually curious, here goes: On any given day, It is safe to assume that I am angry, scared, sad, resigned, terrified and scatterbrained.

Physically, I feel basically fine. I have some low-back pain that seems to be linked to the cancer, though the docs have determined that its nothing else worrisome. I have a painkiller prescription that covers up the pain quite nicely. And I get tired easily. This is because my immune system is trying to fight the cancer on its own. Otherwise, I feel close to 100% physically. When the Chemo starts, I will get progressively more tired. Right now there isn't any pain, other than the slight low back pain. Chemo itself won't cause any pain, though I may experience joint stiffness and won't sleep very well. My mind is as clear as its ever been, except for the fact that I am distracted. A severe illness can cause Post Traumatic Stress Disorder, and I think I probably have that going on as well.

I appreciate people calling me, I really do. One thing I will never get used to, though, is the Awkward Silence. Many will call me and then say little to nothing. I can tell that they are trying to find the Right Thing to Say, but the end result is that I feel even more alone, as searching for the Right Thing to Say frequently means that people Say Nothing At All.

If you choose to Say Something About It, it doesn't need to be finely worded, rehearsed, or worthy of historical texts. If we talk, we *don't* need to talk about the Condition at all. Not sure what to do but want to do something? Send me funny cartoons, Onion Articles, books and bands that you think I should check out, petitions that I can sign to get Minnesota to legalize medicinal marijuana, etc.

If you feel like calling me or writing to me, please do. I would of course love to hear from you. On that note, I have 2 requests, though:

a) That I not be expected to recant the entire Story So Far (I set up the blog partially to avoid having to tell the story over and over and over). Actually, I'd love to talk about almost anything *other* than the ongoing Cancer drama.

b) That you not take it personally if I don't call/write you back right away. I have easy days and hard days. If you catch me on a hard day, it may take until my next easy day before I can get back to you.

The Sickie Pariah

It seems counterintuitive, but the more serious the ailment, the less people call/write or want to talk to you. Reasons for this could be that they are trying to Find the Right Thing to Say, or that they are afraid that you will be a total buzzkill. People may believe that all I will want to talk about is my Condition. Or they may believe that it is somehow not okay to have fun. I spent this last weekend with a few friends and--despite the ominous news--many laughs were had. As often as possible, I try to find ways/excuses to amuse myself and get my mind off of this. I know that people are curious, but sometimes I want to be able to put the whole story on a shelf. This is part of the reason that I don't want to talk about it (or think about it) more than I have to.

Currently, I am experiencing a sudden loneliness, which became markedly more pronounced yesterday when I rolled out the really bad news. In an effort to Say the Right Thing, it seems that many have elected to Say Nothing At All. Believe me, the latter is worse. The only thing worse than feeling like you might not live to see your next birthday is feeling like only a small number would would notice if you weren't there.

I have already experienced the Pariah feeling, and it is fairly gut-wrenching. Ever been fired from a job? Ever met a former co-worker after the fact in a store and had an awkward conversation that basically goes: "Hey," followed by a long silence. How about when someone you meet knows a secret about you: maybe they're friends with your ex and you know that many stories have been told about you. They stand and have conversations with your friends but see you only in their peripheral vision. You can tell they're watching you, but not looking at you. Any of that sound familiar? Well, welcome to life with cancer. The difference is, these are your friends. Good friends, many of them. And it will happen overnight. Yet again, the quest to find the Right Thing to Say often results in awkward silence and even outright avoidance of the sick person. This makes the sick person feel responsible and guilty.

Perhaps--just perhaps--there are people out there that think Cancer is contagious. Sometimes this is the only conclusion I can come to to justify the sudden change in people's behavior.

If you're ever Not Sure What to Say, I welcome you to stare your frustration here. You are not alone. I have felt it myself with other people with severe illnesses.

p.s. Its always okay and call/write me and *tell me* that you Don't Know What to Say.

Tuesday, August 16, 2011

And Then Everything Changed

Last Thursday, 8/11, I had a PetCT scan at the Maplewood oncologist's office. This set off a chain of events that is only just settling down now 5 days later.

To back up, Dr. W. recommended this PetCT scan as a check to make sure that he had a clear picture of the area that he'd be treating, and also to see if there was anything that Mayo had missed.

Dr. Vic called me at about 7pm that same night. He'd stayed late to get the test results and was calling me personally. He said that in addition to the cancerous mass and lymph nodes on the left side that they'd known about, there were also signs of lymph involvement on the *right* side, as well as spots noted on the lungs.

You might recall that I mentioned earlier when Urothelial Carcinoma spreads and metastasizes in the entire body, it usually moves to the liver or the lungs.

So I'm left with only that as a backdrop to my first night of a relaxing weekend at the cabin before starting treatment.

Dr. Vic recommends, and schedules, a bipsy for the following Wednesday at United hospital in St. Paul.

The next morning, I start making phone calls: to Dr. Hunter, my Mayo Urologist; to Dr. McDougal, my Mayo medical oncologist; to my old oncologist, Dr. Grampa; to Dr. W (who ordered the scan), etc. Nearly everyone is out of town. Dr. McDougal, the mayo oncologist, is around and gives me some armchair analysis of the situation. He hasn't seen the scans. The only person that has (Dr. W.) is out of town.

Through assistants and fill-in doctors, we learn that Mayo won't believe Dr. W's finding unless the see the scan for themselves (they do this with any outside tests or scans) which mean we need to get a disk to Rochester from Maplewood. But maplewood doesn't apparently have the ability to FedEx things. They volunteer to mail it, which means it should be my doc's hands Rochester in about a week. They say that Mayo always pays for it then they overnight it. I volunteer to give them a credit card number and they say they can't take it: Mayo will pay for it, they always. I call my Mayo and no: they don't pay to have things to sent to them, the sender pays for it.

I call Maplewood again, as near to livid as you're likely to see me. I make it clear that I really don't care how it happens, but the CD of the scans needs to get down to Rochester and, if need to, I will leave the cabin in central Wisconsin, drive to Maplewood and take it to Rochester personally. Which appears to be the only way, since they don't have the ability to FedEx things. Mention words like "terminal cancer" enough times -- surprisingly, these words have very little effect on people who work at oncology offices -- and eventually they find someone who has the ability to make these things happen.

The disk gets sent on Friday, and is due at Mayo in Rochester on Monday. It is possible, but not likely, that it will get looked at by the physicians on Monday. Tuesday is far more likely.

Over the weekend I try not to think about the various possibilities, which include the fact that the Pet CT is a highly sensitive scan -- many would say over-sensitive --- and could be throwing a false positive. On the gauge of possibilities, the needle can now swing freely through the full spectrum of possibilities ranging from NO CHANGE AT ALL to COMPLETE CHANGE.

The scan arrives at Mayo on Monday, though the CD needs to be loaded in to Mayo's systems. This does not happen on Monday.

On Tuesday morning I make my rounds of calls again, now leaving messages for both of my active Mayo docs. Of Dr. McDougal's doc I ask if the disk is likely to be read today "or this week" I say, being more sarcastic than I'd intended. She doesn't catch the sarcasm and answers as if it was a reasonable question. "Oh, I'm pretty sure it will get read this week," she says with complete honestly. Mayo is amazing for some things, but they have processes that need to be followed, at a fixed speed. It is impossible to get them to move quicker than is normal. You won't startle them or surprise them. They've seen it all before: your dire situation is identical to the dire situation that they dealt with yesterday, and the day before that.

On Tuesday morning I get a call back an hour or two later from Dr. McDougal, the Mayo oncologist. He tells me that it is certainly urothelial carcinoma. There isn't any need for a biopsy. This is partially because it is such a textbook presentation for Urothelial Carcinoma. They also feel that the possible side effects for a lung biopsy weren't worth the risk.

This changes the entire game plan. Radiation is no longer an option because one can't irradiate lungs without destroying them. Surgery is no longer an option since it the cancer is currently circulating freely in the bloodstream.

What this means is that I am left with chemotherapy as my only option, and a good option it isn't. Chemotherapy works by flooding your entire body with toxic chemicals. My (up until a few days ago) chemo plan had called for a relatively light treatment of chemo planned along with a medium dose of radiation, followed by surgery. In this scenario, radiation was primary and chemo was supplemental.

The new plan is still underdevelopment, but will likely call for a 4-week chemo cycle: 3 weeks on and one week off. This will go for 2 cycles (2 months) and then I will have a CT scan to see if the affected areas have gotten better, stayed the same, or gotten worse. The chemo meds will be adjusted accordingly, and then I'll have more rounds.

If the cancer continues to be aggressive (and remember that this grew from nothing to aggressive spread in less than 6 months) then more and more chemo may be needed to fight it. And chemo may not be enough. There may be a time (and it may come in the next year or so) when chemo would be like baling out a sinking ship with toxic, destructive chemicals.

The best case scenario is that chemo destroys of the cancer and and I go through 2 rounds (2 months) of chemo. Even if it is all gone, they'll still give me at least another couple of weeks of chemo, they said, to make sure. The (slightly more likely) option is that they will do another 2 month round, look at that first scans, adjust the meds and give me another 2 rounds, followed by another scan. I'm looking at 2 months (plus a few weeks) of chemo at a minimum and 4 to 6 months is likely. In this time, my hair will fall out, my hearing will get worse, my fingers and toes will get partially numb and tingly and I'll be no fun to be around whatsoever. THese effects may go away and may be permanent. THe hearing loss and louder ringing in my ears (from last time) did not get better. THe tingling in the fingers did go away after about 6to 8 months. This is a longer cycle (and potentially an endless cycle) so we have no idea how it will affect me and if it will be permanent. Tell a musicians that he may only have another week or two before his musical skills will start to go sharply downhill -- potentially permanently -- and he'll be pissed, yeah.

I know there are instances of people beating cancer. Before I began this accidental journey I thought that "cancer" was one type of thing. It turns out that there are many different types of cancer, and not just different because of the different areas that they affect. They are different in the way that they grow, how fast, where they go, what drugs treat them, etc. I appreciate people's positive Cancer stories (and I am glad to know that fellow survivors have found some peace from the disease) but what I really need are positive stories related to my type of cancer, of which I have so far found none. Urothelial Carcinoma, also called Transitional Cell Carcinoma, or TCC, is aggressive and deadly. When I first started looking into it, every story I found was depressing and ended poorly. I stopped looking into it.

Positive thoughts, prayers, healing energies and anything you've got to spare are all helpful. My bladder tumor was shrinking and everyone was amazed at the outcome. Perhaps ironically, the bladder itself is clean as a whistle, I believe due in part to the outside healing that I got. If people will be kind enough to direct their healing attention systemwide, I believe it would be helpful. We are close to the limit of modern medicine vs. cancer. As options are removed from the list, chemo, luck and hope are all that is left.

Wednesday, August 10, 2011

A Few More Delays

(Cartoon found at: - thanks to Brother Kev. for the find)

Today my mom and I went to meet the radiation oncologist, Dr. Wangchungtonight, and the medical (chemo) oncologist, who shall not earn a name.

To back up, the sole reason that I'm now finding a new radiation oncologist is that radiation needs to be given 5 days a week for 6 weeks. Mayo is amazing and I'm sure that they would do an amazing job. However, I wanted to find someone local that they recommended, so I wouldn't have to move to Rochester for 6 weeks. Dr, Wangchungtonight was the only guy that they could think of in the cities. Unfortunately, he's in an (otherwise) dumpy clinic in northern Maplewood, next to a mall. I have become snobbish in my health care providers, certainly.

Dr. W. seems like a great and patient guy and I do feel confident that he can give me the kind of care that I need. He wants to make sure that there isn't any other cancer hiding anywhere, so he wants to give me a full-body PET-CT (with contrast) tomorrow. Compared to and MRI, A CT scan is more like the magic trick where the magician takes a hula hoop and passes it around the body of a floating assistant to prove that there arent' any wires being used. Though this hula hoop is more like the size of a truck inner tube, and costs millions of dollars. A CT scan for the patient) is quiet, painless, simple, and non claustrophobic. The MRI scan is incredibly noisy (earplugs are needed) and you are stuffed into a torpedo tube that (for me) is smaller than the diameter of my shoulders. I'm not normally claustrophobic, but I need to be medicated with valium in order to get through a full-body MRI.

I had a bad reaction to the CT contrast dye that they used a few years ago. This allows them to see everything much more clearly, but it is useless if the patient dies of anaphylactic shock on the exam table. Clearly I haven't yet, but my reaction last time scared them enough that they said: "never let anyone give you CT contrast again." And so I haven't. Apparently, PET-CT is different enough that the contrast dye is different. I'm not really clear on what the difference is between a CT and a PET-CT.

So we'll do that tomorrow. If I break out in hives and have a hard time breathing, they'll pull the plug and we'll try again another day without contrast.

Today was supposed to be (or at least I thought) my radiation planning session. This was supposed to be a 3 hours appointment where I meet with the Radiation Oncologist and get scanned in preparation for the actual radiation. The doc now wants to do the scan first, make sure there is no more cancer  (a good idea) and then from there create his plan of where he will irradiate, using the CT as his template.

So the current schedule is that I'll have the Pet-CT tomorrow (Thursday) and meet with Dr. Wangchungtonight on Tuesday for the radiation planning session (a 3-hour appointment where they will permanently tattoo me with small dots on my abdomen so that the radiation can line up exactly every time. It takes Dr. W. about a week to get his radiation plan together, so this now means that I'll start radiation a week from Tuesday, or on the 23rd of August. I am hoping that these delays (that I can't seem to find any way to bypass) will not mean that the cancer spreads further.

I also met with the medical oncologist (the guy that gives the chemo drugs) today. This guy I did not like, and I found the combination of his pointless chattiness, hard-of-hearing-ness and ineptitude with computer-based ordering and records to be frustrating. He had on a ridiculously shiny striped short, and small black, thick-rimmed reading glasses that looked like miniature Harry Potter glasses. He also hit one of my major pet peeves with doctors: the question of "so why am I seeing you today?" Because he doesn't actually know. Because he hasn't cracked open the records.

On the other end of the spectrum, Dr. Wangchungtonight recited my *entire relevant medical history from memory*, without looking at a single note. And this is a very long list, at this point. He told it like a story. I was stunned. There were things that *I'd* forgotten, even. He had the order down, names, dates, diagnoses, outcomes, everything. I feel good that if you tell Dr. W. something, he will remember it later.
The medical oncologist that I met with today -- that I have decided I will *not* be working with -- will not be appearing enough in this narrative to earn a name.

It looks like Chemo and Radiation will begin on that same (5-hour) day, 8/23. This will be nearly a month after the recurrence was diagnosed , and I am painfully aware of the clock ticking away.

Fellow geeks and nerds: Blog is now Mobile Friendly

Geek/tech update: I just noticed that blogger has a mobile/smartphone-friendly checkbox that must be activated on my end.\ as the blog administrator. Now, any any all who access this blog with a smartphone will automatically get a much easier-to-read version.

More later today after my 4-hour oncology marathon with the new local oncologists, Dr, Wangchungtonight and a new guy that I haven't met.

Monday, August 08, 2011

Exit Ahead ___ Miles.

Thanks to Tanya B. for the find!

Everybody Wang Chung Tonight

Another long —though productive —day at Mayo today, accompanied by Mom and R.
First stop was the radiation oncologist, the cancer doc that specializes in the radiation part of the treatment. This doctor I will call Dr. Quidditch. She laid out a plan of 28 "fractions" of radiation, which is to be done over 5 weeks and 3 days ( treatment is given 5 days a week). I will get intensity modulated radiation therapy (IMRT), which apparently is some super-special kind of radiation that only irradiates (mostly) what they want to irradiate. I asked whether this is something that could be be done in the cities, or if I needed to come down to Mayo. See, I do want the best care possible, but the idea of moving to Rochester and living in a hotel for 6 weeks seemed more depressing than the treatment itself.

Dr Quidditch said that there was one guy that she would trust on the cities to do it: Dr. Wangchungtonight. (His name is actually even more ridiculous than that, and I started laughing whenever I said it — and R. had to leave the car he was laughing so hard — which probably made me sound like a prank caller when I was talking to his scheduler.)

So, Dr. Wangchungtonight will be my Radiation oncologist. Another oncologist—yet unknown—will do the chemo, which falls under the umbrella of "medical oncology". The new, second oncologist will be different from my previous chemo oncologist because it's best to keep both chemo and radiation at the same location. So I am extra special because I have 2 different *kinds* of oncologist.

The whole circus is planned to start a week from Wednesday, 5/10/11. Chemo and radiation will run for 6 weeks. After this I'll be given about 4-6 weeks to recover and let my blood cell counts up to where they should be again, and then surgery is planned for (likely) the week before Halloween.

I also met with a Neurologist, Dr. Harold Whitecastle, who missed his calling as a comedian. If he had worn a red foam nose, he could have given Patch Adams a run for his money. He said that the back pain was most likely not nerve damage, and that it might be related to the cancer or might be "mechanical" rather than neurological. He essential said that it would wither go away or not. Dr, Whitecastle—working with the Urologist and Radiologist — verified that it was not internal bleeding, diverticulosis or another lurking tumor. Pain of this type is sometimes common with tumors in this area. In it seems to be lessening. It is not gone yet, but maybe it is is on its way out. In any case, its not anything more than annoying, which is some comfort.

Wednesday, I meet with Dr. Wangchungtonight for a 3 hour intake appointment were I will get my Radiation Tattoo! more on that on Wednesday.

Saturday, August 06, 2011

Pain, Pain, Go Away

I have been in ever-increasing back pain since shortly after the biopsy. If untreated, this pain prevents me from sleeping and has had me near to tears on many occasions. The docs so far don't think that there is a link to the biopsy itself. I realize they're experts and all, but they did put two enormously long syringes in me, through muscles and deep inside my pelvis, skirting around all of the stuff that's in there.

There may be no connection at all, but I cannot overlook the possibility, personally. I went to see my General Practitioner Doc last week about the pain. He agreed that there might be a cause-and-effect thing going on with the biopsy, but couldn't be sure. He gave me a prescription for Vicodin. No, you can not have any. They are mine: all mine.

I am learning that this pain is the sort of thing that doesn't really surprise doctors then you have serious shit going on with your body. Severe back pain? Yawn.

I don't like popping highly addictive narcotics, and less so the idea that the pain may continue for the next several months and beyond if it is linked to the cancer.

I am afraid that before the year is out I may emulate a few of Dr. House's traits: cantankerous (I'm already that way, lately), addicted to painkillers (time will tell) and dependent on a cane. Oh, joy.

Wednesday, August 03, 2011

Updates, Oncologist, Prognosis.

Another visit to Mayo today. The news was mixed, some better than expected, some worse than expected.

I met with the Urological Oncologist (cancer-doc). We discussed the details of the chemo. This (from my perspective, at least) is better than expected.

The current plan is that I'll have 6 weeks of chemo (this is far less that the 12 weeks that was originally forecast) and I will be on a reduced dosage of Cisplatin. Cisplatin is the (fairly evil) drug that causes numbness and tingling in the fingertips and hearing loss. A fabulous double-whammy for musicians. I experienced both side effects last time and, while the numbness slowly went away, the hearing loss did not.

It makes me happy that I'll be getting a smaller dosage of Cisplatin, but the rounds will be different.

For reference, here's what I did before:

Week 1 (Monday): Cisplatin and Gemcitabine
Week 2 (Monday): Gemcitabine only
Week 3: No treatment.

That was one "cycle" and then the next week I'd get treated with both meds, etc. I did 3 cycles before, or 9 weeks.

Last time around, I was feeling about 90% normal at the end of the cycle, then the next would knock me down again. Cisplatin was so toxic that i only got it once every 3 weeks.

This time, I will be treated *every week* for 6 weeks without a break. It will be a lower dose, but in the end may be an equivalent amount of Cisplatin to what I received before -- that remains to be seen.

In addition, I will also be doing simultaneous radiation therapy, 5 days a week, for about 2 hours each time. The combination of these two will make me incredibly tired, I am told. It will be a very long 6 weeks.

The start date of Chemo is still uncertain, but most likely mid-August.

After the meeting with the oncologist, we went to see Dr. Hunter, a followup just to put everything in perspective and answer any more questions.

I learned that my cancer is currently classified as "Metastatic Urothelial Carcinoma", which means it is a stage 4 cancer. This is the scary level that a person does not want to reach: as high as it goes. Usually stage 4 means that the cancer has spread to the lymph system, as it has in my case. The important thing, Dr. Hunter points out, is that it has not spread to any other organs.

Based on what they know about this type of cancer (and this team would be among the world's leading experts on this type of cancer) it moves fast, grows quickly, and is tenacious. They warned me a year ago that it would likely crop up again, most likely in a different area. And it has. When pressed for further information, Dr. Hunter said that areas most at risk after this would be the liver and/or lungs.

Chemotherapy and radiation are planned to either keep the cancer in check or to eliminate it altogether. The best case is that these two treatments destroy the tumor. As a fallback, surgery (which will leave permanent side effects due to nerve damage and will leave me walking with a cane for the rest of my life) is an option. The worst case scenario is that tumor would be deemed inoperable post chemo/radiation. This is always a risk when using radiation therapy, as radiation destroys the tissues, making them fibrous and dangerous or just plain impossible to operate on.

The Mayo physicians are talented, inventive and knowledgeable: but they still need to follow the same basic laws of physics and biology as everyone else. If an inoperable aggressive cancer is left to its own devices... fill in the blank.

I'm harping perhaps too much on the negative possibilities, but I can't help but turn them over in my mind.

I am now looking forward to starting chemo/radiation. The sooner I start, the sooner I'll be finished with it. One step at a time.