Walkies

Kevin again.

Major milestone today was getting in the first walk since the first surgery (for those keeping score at home, we are at two surgeries in this hospital stay of a currently-planned three). The Physical Therapist was an elegant and wiry woman who boasted proudly that she had not had a patient with an exposed backside in more than 20 years. I pointed out that this was quite a streak of not streaking.

Mike's color is much improved, his energy is up, and I'm no longer wondering if he's ever going to get to go home. Which is a good thing. He's down to 4 liters of oxygen per minute, from 6 yesterday (and most of today). The PT prescribed a second walk today, and at least three tomorrow. The idea is to get him on the road to mobility, so when he goes home he's not helpless. I like this line of thinking.

As of today, the plan is for surgery number three on Thursday (I'm guessing early because most of his surgeries have been early - I think hospitals tend to schedule the morning and use the afternoon as buffer to deal with emergencies, but what do I know, I'm no medical professional).

Earliest possible release day is Friday, with Saturday looking more likely to me. Again, not a medical professional.

- Kevin

Out of surgery already

Kevin here again.

Mike had dialysis yesterday - apparently the wide variety of things he's been subjected to have been hard enough on his kidneys that they basically shut down, which is why he's in the hospital. The process for dealing with this is to hook him up to a machine that can filter the crap out of his blood for him, since his kidneys are not living up to their part of the bargain.

Stupid kidneys.

He went into surgery this morning and it finished quickly, which is a probably a Very Good Sign. The purpose of the surgery was to put stents into his kidneys to allow them to function better. He'd been told there were two options - the easy way would be going in through the urethra, but if there was blockage from the cancer in the abdomen, the surgeon might need to get to the kidneys from the back. Which would be a bigger deal.

Jen texted me at 8:20 to tell me Mike was going into surgery, and called at 8:40 to tell me he was out. Sounds like the fast option worked.

Still unknown: recovery time from the surgery, time to get back to normal creatinine levels, time to get back to normal kidney function, effect of all this on various medications, whether this affects the chemotherapy... so much we don't know. But for now, he's out of surgery, which is better than being in it.

- Kevin

Once more into the hospital, dear friends.

Kevin here.

Mike is in the hospital again. He went in under his own power yesterday. His oncologist called Tuesday afternoon, after reviewing some of the bloodwork from the infusion session on Monday, with concerns on high levels of creatinine. This indicates some kind of kidney problem -- as Mike says, "one of the few organs not already involved with the cancer" -- and is worth looking into.

So, to the hospital, for some additional scans of the kidney, and as long as he's there, how about some scans of the chest and an EKG. Waiting for the results and monitoring him means he is (was) there overnight at least. Which is good, because he's really short of breath, and bad, because hospitals are not restful places to be.

I got there about 8pm, as he was off for scans, accompanied by Mom. He eventually made it back to the room, and then Jen showed up and we had a little hangout party until about 11pm when Mike's eyes were starting to droop, and then we sent Jen and Mom home. I stuck around for a while. He was tired but not asleep, and we were waiting for the middle-of-the-night scans recommended by the hospitalist, so I figured some company wouldn't hurt.

Hospitalist is an interesting word. Wikipedia tells me that it dates back to 1996, and is used to describe doctors whose professional focus is on a location of care (hospitals) rather than an organ (podiatrists), a disease (oncologists) or the patient's age (pediatricians). Man, healthcare is complicated.

The hospitalist in question was very nice. She'd clearly read through Mike's charts and background information, and followed up on the specifics of why he was in and the chest pain he had reported to the staff while he was being transported to and from radiology. After some thought (and some medical poking and prodding) she offered a preliminary diagnosis of musculoskeletal pain, caused by his heart working overtime to get oxygen to his body with his low hemoglobin counts. The other options, for those keeping score at home, are heart attack (not likely because of the location and symptoms) or pulmonary embolism (not likely because of the symptoms and the sound of his lungs).

The night nurse, Rosalinda, is really nice. I sometimes wonder why people chose nursing as a profession, but it's clear that she chose it because it means she gets to take care of people. She was even doing it to me. I was fine up until that point, but I started crying after they took him off for scans about 12:30 am and she told me I could listen to him (and go home) or stay if I wanted.

More when we know more.

- Kevin

"Pass the Crimson to me, Jimson"

Those of my generation (or older) might remember the Nervous Norvus "hit", "Transfusion", which I recall having on perhaps a well-worn 45 as a kid, though it may have actually been on an LP collection called "Goofy Greats" that sounds vaguely familiar to me. My  brother may remember more clearly what we had. 

Anyhow, there is a point to all this reminiscing. I'm currently at Abbott Northwestern awaiting a red blood cell

Transfusion. Well, two transfusions, technically. Or one transfusion of two units. 

The reason for all of this is that my hemoglobin (part of red blood cells that function as oxygen transport) has been steadily falling since my chemo treatment with the new drug, Alimta, a couple of weeks ago.

My low Hgb could be a large factor in my shortness of breath over the past few weeks. Even with the supplemental portable oxygen, I'm still functioning as if I live at about 12,000 feet. I did for a number of years live at about 9,000 feet up, and had much, much more energy than I do now. 

Supposedly, the positive effects Of the infusion (more O2, more energy) will be felt just about right away, and may last for a few weeks, potentially. But now we know that in my body the chemo and the Hgb fight against each other. I'm scheduled for chemo next week, and the hope is -- with this transfusion -- that I'll be strong enough to go through with chemo as planned. It also means that I might be able to leave the house and maybe play a few songs at a house concert in a week or two. I'm hopeful that I can reclaim some "normal"-ness, at least for awhile.

Living with this shortness of air is at best annoying, and at worst hugely anxiety-producing for me. The tubing (when home) and the shoulder tank (when going out) are cumbersome and make me very self-conscious. Even the exertion of climbing the 4 steps up from the back door after letting the dog out or in are sometimes too much for me and afterward I collapse on the couch, gasping for air and trying to remember to breathe deeply and slowly. Meanwhile my heart is racing, partly from anxiety that I'll stop breathing, and also because my heart is trying like mad to push the blood around to make up for the oxygen deficiency. 

So I'm looking forward to the end result of the transfusion. The process isn't much different from my chemo infusions, except that the transfusion takes longer, and the blood is refrigerated so I'll be very chilly all day.

Oh, and, while I'm on the general subject: donate blood. It's the right thing to do, and they give you cookies. If you're eligible to donate blood platelets, you could literally be a lifesaver. Platelets are in the shortest supply, nationally, as they only have a shelf life of 7 days. Some cancer patients need blood platelet infusions a few times a week, even. There are some donors who will donate for a dedicated patient (in order into make it easier on their immune systems) and these relationships could go on for years. To be clear, right now I don't need platelets, just red cells. But there are many out there who desperately need your blood. The blood donation center will figure out what blood product you're the best candidate for donating and -- assuming your blood is clean, which they'll test for up front -- they'll take it over and over again. They don't pay for blood (like they sometimes do with plasma) so it truly is a donation. But it makes you feel really good. And not just because you're light-headed from the brief drop in blood volume.

I have donated blood many times in my life, and I feel better about being a blood recipient today knowing that I have also given. 

Want to help? Not sure what to do? Donate blood!

Pneumonia, the Sequel.

So, with a progressively worsening cough, I went to see Dr. Larry (my primary care practitioner) yesterday afternoon. He ordered a chest x-ray, and just called a few minutes ago with the positive results.

He described it as "early pneumonia", but since it seems like its maybe the same old pneumonia as before, I think it's probably more like "the Return of Pneumonia". "Son of Pneumonia" makes it sound like some sort of revenge plot (which for all I know is the case. I get so little I formation about the wars going on inside my body). "Pneumonia, the Goopening" is another possibility that fits.

I have been prescribed, and am dutifully taking, an antibiotic. I started this last night and felt some slight relief already about 4 hours later.

I need to watch out for increased shortness of breath and continued fevers, etc. As with last time, a turn for the worse could mean some hospital time.

Right now I'm enjoying the possibility that this will all fade away and I'll start to get some energy back. I might even be able to get off the portable O2, if it goes well.

Tonight I'm looking forward to improved energy, and a great weekend with Jen.

Boo is worried, but I think she's getting to the "but what about me?" stage of all this, and it hitting up all the visitors for treats and walks, etc. It makes it harder that she refuses to sleep on the people bed, so we don't even get that time together. If I'm out a lot during the day, or napping, or she prefers her dog-beds to the shared people/dog couch (generally she does) then it feels like we don't get much time together at all.

Anyhow, that's the news.

Doldrums

Or perhaps just the nadir. That's got to be what I'm feeling.

Tired, exhausted, out of breath, tired of coughing, not sleeping well enough, etc.

Here we are at chemo (Alimta) round 1 +11 days, I feel chemo-y, but different -- but there's likely a few things going on.

Last night I ran a fever -- it was 100.3, which is the magic number at which you're supposed to call the oncologist, day or night. We did. The other symptoms I was having weren't worrisome enough to warrant a trip to the ER, so I was instructed to take a Tylenol and check the temp again in an hour or so. It was then down, below 100, so that was good.

The back is slowly improving after the shots, but not as fast as id like, so that still a factor.

Today has been a slugfest. I have nothing concrete planned for a few hours, so I decided to get in some extra napping/snoozing as much as I could. It was only moderately successful. Boo is very patient, but she has already had breakfast and has been out a couple times, thanks to Jen.

I'm feeling extremely thankful for all the help I get, and more than a little frustrated by my current need for it. Using portable oxygen and occasionally taking advantage of wheelchair rides and ramps is just not who or where I thought I'd ever be.

Final word: no lung or leg clots!

I just heard from my oncologist, who relayed the radiologist's final findings: no blood clots or embolisms in legs or lungs. Good news!

Embolism?

According to the verbal report from the radiologist, yesterday: no, I do not have any embolisms in my lungs as far as he could find. Another radiologist was doing the "official" read and I should have all results today, hopefully, including the leg ultrasound results.

And, so far, the o2 seems to be helping -- though it is a bit cumbersome.

Round 1 (formerly Round 5)

Today I had the first treatment of Alimta, the new chemo drug. Infusion on this one is really fast -- about 10 minutes for the drug itself, but there are a few other things they run before and after, so the whole process was about 2 hours. So far I feel just a bit nauseous.

The Lungs, and O2.

And there's another concern. Something else to worry me and many of those close to me. Hooray! Because of my shortness of breath and coughing situation, and my resting/active/recovering pulse/ox sats and heart rate, I need to be followed closely to make sure that I don't have a blood clot in my lungs, otherwise known as a pulmonary embolism. This should be a particularly scary term to my extended family, as my aunt (my mother's sister) recently died very unexpectedly of a pulmonary embolism following a bad coughing situation that just wouldn't go away and a feeling of starving for air, which I feel occasionally these days now. This means I get more scans tomorrow. This one will be a CT (*totally different from the PET/CT that I had last week...) as well as an ultrasound of my legs, where these things can start. This will (hopefully) rule out the existence of clots. I should have the results of this tomorrow or the next day at the outside, and will report.

It also means that I qualify for my own home oxygen tank(s), which will be delivered shortly. No, you will not see me shopping at Rainbow carting around an O2 tank. It will stay at home, as I am way too self conscious to venture out when using it. And its not an all-day thing, anyhow. Each tank only lasts about 4.5 hours. If I smoked, I'd be one of those people taking hits from the tank and then having a cigarette, until there was eventually a loud explosion. Luckily, I don't smoke.

Rounds, rounds.

Because I'm on a new drug, the numbering system for rounds has officially changed: the clock is now reset to round 1. They'll scan me again at mayo after 2 or 3 rounds, so in about 6 to 9 weeks. Lets hope that Alimta sucks less than Docetaxel for me... AND is easier to tolerate.

Otherwise, pretty standard post-chemo here: feeling tired and a little bit nauseated. Jen is making me some great delicious-sounding dinner concoction, partially based on Easter Ham leftovers. And special cancer-fighting dessert cookies. Yum! :)

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.