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.

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.

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.

A Few More Delays

(Cartoon found at: http://xkcd.com/933/ - 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.

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.

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.

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.