Friday, April 06, 2012

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.






18 comments:

John Slade said...

The good news - I'm the first to comment! The bad news - I've read your post and comprehended what you said...

Well, that's pretty sucky. I've not been a 'oh be happy sunshine yay that will scare the blues away' kind of guy, so I expect that processing this will lead to some pretty hard places. So a huge internet ((hug)) because those don't have to worry about squishing you too hard in a painful place. And thanks for sharing, hard though the news is.

Kari said...

Michael, I am sending you every bit of supportive energy I have. I can understand how frustrated you must be and please know I am amazed at your wit and resilliance. If there is anything I can do for you, please know I am here for you. Big Karebear hugs!

Kevin said...

Love you. Wish I could do more.

RachaelHD said...

David, Rowan, Raafael, and my mom all send their love. You have my number call anytime you need anything.

I love you.

Rachael

Dave Matheny said...

Anybody who could describe the yet-to-do drugs as " 'Whoknowsia', 'Worthatryadine' or 'Betterthannothinga' " is clearly a son of mine.

(The automatic e-mail function didn't work this time, so I've been doing unimportant other things instead of reading your post. But now I'm up to date, clinically, at least.)

Anna B said...

Well pooh. And that's my polite reaction. Hate that you are going through all this - hate what the disease is doing to you and how it makes you feel. Crud. And words less fit for polite company. Perhaps we should also work on a drug called "wisheyecouldmakeitallbettera"...

Nigel Parry said...

fuck two ducks

TootsNYC said...

"annoyed, disappointed and more than a little scared"

That sounds about right. "Pissed off" would be accurate for me.

I love you, Michael.

-Talley Sue

Kelly McCullough said...

Hugs man, and positive waves. Also, damndamndamn.

Lynndelle Pratt said...

Sorry to hear of the sad news and wish the best for you as you heal and recover! Lynndelle

T. said...

What to say when words fail the heart of meaning...

Fuck a third duck
Cancer sucks animal appendages
I hate that this is happening to you
I'm a gargantuan admirer of your person and processing
I want you to live. I want this to go away. I want you to be happy.
you're a joy to read even when the news is shitty
I love you

M said...

Thanks, all! It means a lot. Oh and Nigel and T: If you invite me over for dinner and duck is on the menu (Or even TurDuckEn, which I am curious about) I'll likely choose the vegetarian option. :)

R said...

I will add to the duck festivities:

May a fourth duck be known biblically

May a fifth duck have an uncomfortable conversation with a sixth duck's parents after the pregnancy test comes back positive

I love you, brother. I hope and wish and hope and wish for good, good, good goodness for you every day. Words are inadequate!

Raymond

Wendy said...

Michael ~ hugs to you from me. Something to look forward to: a long weekend Up North this fall, surrounded by beauty, dogs and friends. I cannot wait.

As always, in the meantime, any way I can be of assistance, just let me know. I love you.
Wendy
ps: when you were first diagnosed with the bladder cancer I bought a card that said "when you are going through he'll, keep going." I promptly put it somewhere safe to send to you and just found it again the other day. I need to get that in the mail to you.

Wendy said...

Michael ~ hugs to you from me. Something to look forward to: a long weekend Up North this fall, surrounded by beauty, dogs and friends. I cannot wait.

As always, in the meantime, any way I can be of assistance, just let me know. I love you.
Wendy
ps: when you were first diagnosed with the bladder cancer I bought a card that said "when you are going through he'll, keep going." I promptly put it somewhere safe to send to you and just found it again the other day. I need to get that in the mail to you.

Wendy said...

Michael ~ hugs to you from me. Something to look forward to: a long weekend Up North this fall, surrounded by beauty, dogs and friends. I cannot wait.

As always, in the meantime, any way I can be of assistance, just let me know. I love you.
Wendy
ps: when you were first diagnosed with the bladder cancer I bought a card that said "when you are going through he'll, keep going." I promptly put it somewhere safe to send to you and just found it again the other day. I need to get that in the mail to you.

Wendy said...

Michael ~ hugs to you from me. Something to look forward to: a long weekend Up North this fall, surrounded by beauty, dogs and friends. I cannot wait.

As always, in the meantime, any way I can be of assistance, just let me know. I love you.
Wendy
ps: when you were first diagnosed with the bladder cancer I bought a card that said "when you are going through he'll, keep going." I promptly put it somewhere safe to send to you and just found it again the other day. I need to get that in the mail to you.

Laura said...

Michael,

Damn, that sucks. I hate that you are going through this. Really, what else is there to say except I think about you often and wish for strength and healing for you when you need it most. All my love.

Laura

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