12 posts tagged “ct scan”
It's 4:30 on Tuesday, Nov. 3rd, which is significant if one plans to participate in NaNoWriMo. I've spent most of the day organizing Hub's maddening sock drawer and uploading photos to Facebook. At one point I considered discarding FB - it's a time sucker and my brain's not geared that way (I barely even get on). FB's immediacy is scary - the instant I post anything, there are comments (not that it matters). I'd be better off posting a cry for help on FB than use a cell phone. I'd achieve greater simultaneous coverage and have a better chance at being rescued. So I'm keeping the account, removing the privacy cloak, and actually trying to be social. Sort of. I posted some photos, a drop in the bucket compared to my Vox posts. Coming here to read my long-winded rants seems to pain non-Voxers...but I like that about it. And I like this format (even though it seems increasingly unstable, Vox!)...so until I figure out my WordPress situation, here I stay.
"Aren't you scared for me?", I asked Hubster. "No. I know you'll smack it down like you did before." If I didn't know him better, I'd think he was just being brave, but I think that's what he believes. I don't think he can imagine me being completely unable to do anything, especially take care of him!
So, here's some bits and pieces on the health front. It doesn't represent my mental state of course (which is always dubious)!
I feel slightly confused, a bit like the weather, which is cloudy and muggy and warmish. I laugh at Anthony Bourdain, who could eat Balinese roast suckling pig till he loses consciousness and proclaims it the best he's eaten (and he gives a rundown of all his pork place highlights). I can certainly relate to his feeling that it's time to stop the madness and stay in paradise. I'm suddenly drawn to Bali, feeling deeply the insight of his commentary. But I digress.
Dodged another bullet for 3 more weeks at least! What a relief! There's even improvement (in the CT scan), despite all the problems we've suffered with this house (leaky garage, no heat, broken dishwasher, etc) and neighborhood, Bruno dying, getting the flu on the cruise, the truck being vandalized and tools stolen, having my health insurance axed then coming down with shingles, etc...Imagine the improvement if we'd stayed in Alameda! I suppose one never knows, but I like to think the pottery class is what's making the difference. And the love of a workaholic but otherwise wonderful husband. And the support of all y'all, not least being the medical team.
"If there are Big Trips you want to do, go now while you're doing well. Don't make plans for October---we don't know how you'll be then."
Dr. Sattar, the oncologist covering for my own traveling doc, proceeded to tell me it would be preferable that I go to London ("11 hour nonstop flight") or Hawaii, rather than drive to Yellowstone and spend a week of strenuous activity at high elevation. If I should hike, it should be at 3 or 4,000 feet. I marginally passed the O2 saturation test, and my hemoglobin levels are excellent (considering I'm at my 3rd cycle). Liver's taking a hit due to Tarceva, so definitely no alcohol can be consumed :(
"A picture's worth a thousand words."
That's what he said, as he showed me the last and most recent CT scan side by side. What a difference---I wish I could post it. The report hasn't been authenticated, so I have to wait for an official copy. But in a nutshell, the pleural effusion (fluid in my left lung) has resolved, pericardial effusion (fluid around heart) is decreased, no new hot spots, other lesions are stable, and last but not least....the main tumor is 2.6 cm....down from 4.0 cm (the smallest it's been till now)!!
Praise the Lord, and Allah, Buddha, and all the other deities that watch over us.
Is that a breakthrough or what? Much more than I even hoped for. I've gotta go somewhere, like he said, while the irons are hot. Where to go, where to go, where to go?
"I can't cure you."
The words tumbled out of his mouth, in opposition to the more hopeful sentiments of past visits, where his goal was to get me to scuba dive again, "Even if it's just a matter of putting the gear on, going down, and coming back up." Dr. Simmons was a little more guarded than usual, possibly because our visit was interrupted by another Taxol patient reaction.
I've been coughing, with shortness of breath, for 9 weeks. My scan was "good" though, so the complaint fell by the wayside. It's escalated, and I mentioned the similarity of my walk in SF last week to the experiences I had prior to diagnosis. I was worried. It's a tough situation because of all the tree pollen in the air. I have infamous allergies to trees (sad, they're one of my favorite things), but they've always manifested as hay fever. I've never been a "cougher" until this illness struck.
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I began that post on the 20th of April but couldn't finish it. Too many distractions, my brother was up for a week, then I had my bone treatment which was followed by what I can only guess was a horrendous incidence of food poisoning. I just wasn't feeling it (the post). And I'm still not, but I had my 6-week scan today, and my next onco visit/chemo treatment is on the 9th, so this needs legs.
April 18th's visit was markedly different from past appointments, where I was doing well and we all sort of breathed a sigh of relief until next time. The doc listened to my lungs and said they sounded fine. When I asked about traveling to Hawaii, though...he was reserved. In the past he'd said, "Why can't you?", when asked. This time he had his assistant place the oxygen sensor (?) on my finger and walk me around the corridors a couple of times, ostensibly to test lung function. The results were alarming. My oxygen level dropped to 83 (below 88 is unacceptable). The nurse was in disbelief. She thought perhaps the finger thing had slipped off or I really was on the verge of passing out. We did it again, at a slower pace. My pulse shot to 101, but my O2 level stayed at 99. Still, it was cause for concern. I was told I could fly to Reno or Oregon , but New York was not recommended. Therefore, flying to Hawaii is out. At least for now.
The moral of the story is, don't put off till tomorrow what you could've done yesterday, right after chemo. Berating myself for going to NY instead of Hawaii at Christmas accomplishes nothing, but I'll probably be doing that in my sleep.
The clinical trial nurse will be on vacation next week. I usually visit
with her when she replenishes my study drug (the placebo which is supposed to
be Tarceva). I've told her of the cough. "Well, since you're
symptomatic, we may have to shift gears even if the scan is ok." In
not so many words, this means "end of trial". Any treatment
outside the protocol ends the clinical trial.
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So tonight I caught Ted Koppel's documentary, Living With Cancer, on the Discovery Channel. His best friend Leroy Sievers had lung cancer, and had undergone initial chemotherapy. During a 3-week break, the cancer metastacized to his spine. Not till the end of the show do you find he had transferred to John Hopkins for treatment after this occured.
The show follows Leroy's path through second-line treatment. He begins a 9-cycle run of chemo, and at some point, one of the 3 lung tumors grows by 50%. I wish they would've mentioned what he received, but maybe that would cause an uproar among the masses not receiving said combinations. Surprisingly, nothing about possible clinical trials is ever mentioned. Also, nothing about the type of lung cancer he has, and whether it was caused by smoking or not. Maybe it doesn't matter, but to us non-smokers, it kind of does. Lung cancer is severely underfunded due to the stigma that only smokers or folks exposed to asbestos get it. Lung cancer deaths are 4 times greater than the next largest killer---colorectal cancer, but it's never divided into smoker/nonsmoker deaths. Research funding is about a quarter of what it is for breast cancer. And no one's doing fundraisers or marathons for lung cancer, mostly due to the stigma.
Now, this is vague---but now that chemo is no longer a treatment option, the oncologist (a "fellow", or oncology resident) decides to radiate the lesion on Leroy's spine (is this a quality of life decision?), thus leaving him with "just" the 3 lung tumors. He is then told to wrap it up---they can't do anymore for him. It's time to get his legal papers in order. Again, more vagueness---all of a sudden, this radiation oncologist appears and offers to use a fairly new procedure on him: Radiofrequency ablation. It's an outpatient procedure, and has some risks, not the least of which is the lack of clinical trials proving the efficacy of the method. They stick the needle in his tumors, send electricity through---the tumor is fried to a crisp. It's done, no complications. This film segment is fairly short, including Leroy's interview in the recovery room. How did Dr. Georgiatus (the radiation oncologist) get into the picture? Did Leroy do lots of last ditch attempts to find other treatments? Did one of his many connections come through with the name of the mad scientist in the basement? Leroy's oncologist seems almost at odds with the whole thing.
Suddenly, at 17 months after diagnosis, Leroy is cancer-free. Not cured, Leroy is careful to say. But scans are clean, for now. At a commercial break, I google John Hopkins and Radiofrequency Ablation. I get nothing. There's info about it from the National Institutes of Health, but nothing about it at John Hopkins. The show then goes live with a townhall meeting set-up, and there's Leroy with Elizabeth Edwards and Lance Armstrong (whose now-legendary story prefaces the documentary). Questions are fielded, but not much more new information. Lots of encouragement to blog.
I watched the whole cotton-pickin' 3 hours. The show is about feelings and not as informative as I
thought it might be. It's a personal piece, I guess. Much of what
Leroy went through and feels is on the mark and spot on, so it deserves at least a "B". However, for totally vague
information and lack of discussion of treatment-related issues, it's going down to a C+ (for being made). Not much solid
info about "living with cancer". Leroy never discussed how he
overcame his nausea or his bouts of sadness or how his treatment decisions were limited by being unresectable, etc, but I think he says it's all in his blog.
His girlfriend(?) speaks up at the end, but prior to that, one doesn't even realize she exists. I believe the show replays on the 7th...check your
local Discovery Channel listings.
Edit: A counterpoint to the documentary is Jonathan Alter's article in the April 9 issue of Newsweek, also called "Living with Cancer." Again, it includes an interview with Elizabeth Edwards and a piece with Lance Armstrong. It contains a bit more information than the show, but the article basically concedes that this is a good moment for media attention. I note a lack of opinion on all sides as to the government's diversion of funds from research to the war in Iraq.
Look, the trees
are turning
their own bodies
into pillars
of light,
are giving off the rich
fragrance of cinnamon
and fulfillment,
the long tapers
of cattails
are bursting and floating away over
the blue shoulders
of the ponds,
and every pond,
no matter what its
name is, is
nameless now.
Every year
everything
I have ever learned
in my lifetime
leads back to this: the fires
and the black river of loss
whose other side
is salvation,
whose meaning
none of us will ever know.
To live in this world
you must be able
to do three things:
to love what is mortal,
to hold it
against your bones knowing
your own life depends on it,
and, when the time comes to let it go,
to let it go.
---Mary Oliver
It was a year ago today that I was short of breath and gasping for air as we walked down New Montgomery St. to get to a new tapas bar. My sister and our guests were smoking up a storm, it was cold and windy, and I felt like I was climbing Mt. Everest, I was breathing so hard. I've come a long way since then, thank God.
Coincidentally, I had my CT scan today, and I've been coughing for the past 6 weeks, so I'm a bit worried. It's kept me from making vacation plans.
I should probably give these cancer updates a title theme. I was thinking along the lines of Star Wars. I have to give this more thought, although more and more I see my disease as the Death Star and my white cells as the Rebel Forces. As Yoda would say, "Do. Or do Not. There is no try." Yoda told Luke he failed because he didn't believe.
So I've been watching alot of Star Wars on HBO.
Well, the Force is with me, dammit. A friend who shares the same oncologist said his comment about me was, "She's tough as dirt!" --- or something like that. I'll take that as a compliment, considering he believes it to be force of will, rather than a physical fact, my ongoing well-being.
I am not so diligent as I should be, however, with the things I think are ultimately most beneficial: exercise, a restrained diet, meditation, guided imagery, prayer, alternative aids like massage and acupuncture. I truly believe these are the keys to beating this thing, or at least making the short-term goal of five years survival. I say five years, because a mere 15% of all lung cancer patients - total statistics, which mean including those cured by surgical resection - live beyond five years. If I have to live with this thing, fine, but let me live longer, with a good quality of life!
Anyway, this visit was uneventful. They're basically waiting for the next CT scan to see if there's any movement either way. I would like greater shrinkage, but this means continued waiting on their part, as they can't unblind the study (clinical trial) unless there's disease progression.
Like I said, if I can will this thing to shrink without the aid of pharmaceuticals, more power to me.
I did read that a study on higher doses of Avastin (Bevacizumab, which is one of the study drugs I'm on) showed progression-free survival was 30 months as compared to 17 months for those treated with chemo agents alone (without the addition of Avastin to the regimen). That's a long time compared to initial studies showing additional survival time was only 2 months. I'll take 2 years, thank you.
I am eternally grateful for the lack of side effects up to this point. I feel pretty good. Praise the Lord, knock on wood, kiss the lucky charm, and everything else. I still get tired when I do alot (my alot is not the same as your alot). But my hair's grown back and I like it. Reminds me of the '80's look. Now if I could just lose the 15 lbs. I've gained since November, that would be great.
That's what the hubby says and it's kept him on track all these years (even though he doesn't do anything slow at all).
I had my usual doc visit + chemo on Valentine's Day, with my oncologist running so late that I only got a 7- minute visit before being dragged off to infusion before closing time. This was also my latest CT scan review.
He said he was "concerned---not apprehensive and not fearful, but concerned". Something about my body being made up kind of weird, not quite right, but he can't figure it out. I started the study (clinical trial) on Thanksgiving, and patience isn't his strong point---things are receding, but for my age and health, we should be seeing larger results, faster. He thinks I'm receiving the placebo instead of the study drug, due to my lack of side effects. He's ancy and will unblind the study the minute anything starts happening. But we have to squeeze every drop out of this treatment right now. That was his 7-minute assessment.
Ok.
During the infusion, the clinical trial nurse came over and gave me another perspective. She explained that the large tumor (lung) had decreased by .4 cm and the bone lesions were more sclerotic (healing, scar tissue). The way the radiology report was written indicated a greater number, which prompted her to call. The radiologist said there were no new lesions, but that more of the lesions were sclerotic.
That said, she remarked that statistically I was doing far and away much better than any expectations (especially if I was receiving the placebo rather than the study drug), and the key seemed to be having fun.
So, I'm supposed to have more fun...hang out with friends, laugh, go to museums and concerts, get massages, sleep in, and not worry about the thousand and one things I worry about, like work, money, my aging parents. I'm thankful for every bit of fun I've managed since my diagnosis, but it's definitely on borrowed time.
I am relieved, buoyed by yet another "stable" scan. I'm trying to be more diligent about exercise and guided imagery, meditation and diet (I've gained 14 pounds in 2 months---that can't be normal). I have something like a rash on my scalp, so I'm not entirely convinced I've been taking sugar pills since Thanksgiving. But even so, I want to believe in the mind's power to heal. It's the final frontier, and I've read many accounts of incurable patients going into remission. It doesn't happen overnight, but if my tumor shrank by .4 cm/6 weeks, I may be well in a year and a half. I'll take even more modest progress, if it means I'll live that much longer...heck, I want to grow old!
Of course it's not that simple, but simple goals are best: shrinkage of main tumor and good quality of life. I would be content with success in those two areas. To that end, I've been encouraged to join a gym and push my exercise limits (the physical therapist says it'll take care of the pain/insomnia/weight gain issues). Now if I could just address the thinning hair (ironic that I, previously of the big-hair contingent, should say that) and the vanity issues, which I can't believe are plaguing me at this juncture. It's a media disease, I'm certain.
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I received jewelry for Valentine's Day, for the first time ever. Even though it's a "Hallmark Holiday", it's nice to exchange vows of love in a formal way. In years past we paid it no mind, and Mike absolutely loathes cards, so we don't use that gesture. We are exactly opposite---I'm relatively unmaterialistic and love a written sentiment, and he likes stuff---Swedish fish and good candy, small expensive gadgets, large expensive boats, expensive hobbies, expensive...Hmm. Well, he might have to "settle" for his wife living longer for some holidays to come ;)
