Interpreting Scan Results

There is nothing weirder than seeing your wife's body rendered in transparent, skeletonized 3D and the oncologist using the mouse pad to turn it around so you can see it from different angles.  Weirder still is seeing these little bright dots which represent tumors (boy, those tumors like sugar).

Big Day Today

Today we get the results from the PET/CT scans she had yesterday.It's always a difficult night's sleep before results day. We had such high hopes for Ipilimumab, now called Yervoy, that it was a real disappointment that our scans at week 12 and week 16 didn't show any signs of efficacy, even though she had indications of side effects. She hasn't had any new subcutaneous tumors pop up this month, so we have cautious optimism that things aren't moving too quickly, even though we know the tumors are growing. Stay tuned.....

A 4-Hour Workweek for the Cabana Boy?

I picked up a book for Casey the other day that is quite popular lately in the business world. It's been on the bestseller list for a while  - called the 4-Hour Workweek by Tim Ferriss. I read through it quickly. It's got a lot of very familiar management, time management, prioritization and motivational aspects he picked up from many of my favorite authors over the years. The unique spin is how he encourages people who have portable skills that need not be placed based to go virtual, outsource all aspects of your business or work you can, and become an virtual entrepreneur. Clearly not everyone can do this, although many professionals could, such as software developers, graphic designers, consultants, etc. But what about a cabana boy?

There is a lot of work which is place based and relationship based and is based on 1:1 direct, not virtual, communication. You cannot give a hug over the internet. A cabana boy's job is pretty much 27x7x7. As much as I would like to outsource many aspects of it - I think it would be a tough sell to have a virtual assistant in India provide Meagan the emotional support she needs at various times. Maybe outsourcing the logistics of travel and accommodations if we are regular visitors to Bethesda. But not the hugs.

SNAFU

Everything got shifted back a day. When they called with the pre-scan instructions (what not to eat, when to stop eating, etc.) they indicated Meagan was only scheduled for a CT scan. We'd understood it was a PET/CT scan - which we want at this step. Of course the machine was booked so we couldn't just tack it on to our existing appointment. After a call to the oncologist's office and lots of juggling on their part, the scans are now Wednesday morning and the visit to oncologist is Thursday at 10:00. It's not a huge deal and we try to build a lot of slack into our schedule during weeks like this - for either excessive waits or emotional recovery. But atypically I had scheduled some things on Thursday which are a little harder to accommodate changing. Oh well, at least tonight we feast on at and protein (or at least Meagan does)! For PET scan days you can't eat carbs and sugars for 24 hours beforehand, nor can you exercise. We haven't been going to our formerly favorite restaurant - Café Lago - because of our new nutritional regimen. But tonight - we go for it - all the salami, cheese, nuts and olives she can eat!

Scan Day Tomorrrow

Meagan will eat well today, because she is fasting from 8:00pm tonight. Tomorrow is the full meal deal, CT and PET scan. Nothing like a barium cocktail for breakfast and radioactive sugar in the veins to perk you up!

So I got a call...

I received a call from our naturopath last night. Profusely apologetic. Outraged our calls to the clinic hadn't been returned, although 'I've heard this complaint before', and promised to dig into it deeply. Understood how our confidence had been eroded given the lack of ability to get a hold of our health care practitioner. Gave me her direct email, and said she checks it daily no matter what. Apologized for not getting back to us with the result of her conversation with our oncologist regarding a specific treatment, said she thought he would be contacting us (now that was a lame excuse), but did take responsibility for not following up.

Cost of Treatment: Ipilimumab (Yervoy) and others

Maybe you read yesterday's post about the announced cost of Ipilimumab (Yervoy) by Bristol Meyers Squibb. $120,000 for the four infusions. The Melanoma Community Boards are lit up like Christmas trees - many grateful for being able to access a drug which they were not able to get on before approval at any price (with the hope insurance will cover portions of it or negotiate a rate deal with the drug company). Many are outraged at the pricing, and the fear it will be unaffordable for them.

Ipilimumab (Yervoy) Approved by FDA

It's definitely noteworthy, although it didn't work for Meagan.
But read the article for the price tag!
The research oncologist we are likely to see at the National Cancer Institute, Steve Rosenberg, is quoted.

Stirred Up A Little Action

I drove out to Bastyr University's campus and the office of Integrated Oncology Research to find out why our naturopath (also the head of the department) and the office did not follow-up as they indicated they would (a week ago Monday) with regard to their recommended treatments and why they didn't return our calls after we hadn't heard from them. Meagan has truly felt abandoned by this unprofessional conduct. So what happened?

Contemplating a Visit Today

I'm planning on an unannounced visit to our naturopath this afternoon. Our last appointment was eleven days ago. There has been no communication from them, either with the information they were supposed to provide us, or in response to two phone calls from us to them. It's so incredibly unprofessional and in violation of standard of conduct it's mind-boggling. Plus Meagan feels totally abandoned. Needless to say, we will be moving on to another practitioner. But for this reputable of an institution (supposedly) and the alleged reputation of the practitioner, it's just unconscionable.

Rough Patch

The last couple days have been pretty rough emotionally. Not so much related to the progression of the cancer, but as to how the family deals with it. Specifically, the emotional impact when outlook and emotional coping strategies vary.

When You Talk About Cancer

There seems to be a pattern. Typically we talk about Meagan's cancer in the morning, over tea. The discussions here tend to be a bit less emotional, leaning more to the process, logistics, practitioners, "what do we do next" kind of talk. I'm usually pretty ready for this, as I've been up for a couple hours already, have read a lot, probably researched quite a bit, so my brain is functioning. This is a good thing, because you can't have a non-functioning brain when topics come up.

Cancer Rates

You learn lots of things about cancer generally when you are doing research into supplements, treatments and clinical trials.

Dining Out

Dining out brings a set of challenges which I suppose anyone who has allergies or philosophical issues (vegans) is used to addressing. Our anti-cancer diet at home is quite good. We don't want set-backs when we go out, by fueling the cancer with bad stuff (fried foods, hormone laden protein, refined starches, high sugar). When going out though, if we are not going to a pure vegetarian place such as Thrive or Chaco Canyon, we have had our moments.

The Tension Builds

It's at about this time  - ten days pre-scans - that the tension starts to build. Right now we are on an every other month PET/CT scan (insurance driven), which provides a bit more data than just a CT scan. The PET scan involves an infusion of radioactive sugar into your body and a device that measures the uptake of that radioactive sugar by cancer cells (cancer loves sugar). So you can really see where the cancer is, and unlike the CT scan which is just measuring tumor size, determine size and if a particular tumor is active or not.

Expectation Management

So we had our naturopath visit on Monday. Meagan received two new supplements to take (which I outlined in an earlier post). One of the treatments discussed was high dose, intravenous delivered Vitamin C. We got a long explanation of the curative powers of Vitamin C and how it affects cancer tumors and cells. When we left, the naturopath was going to email and contact our oncologist to get his buy-in.

Ipilimumab (Yervoy) - thoughts after treatment

One of the questions people are asking on one of the melanoma discussion boards I frequent is: "does presence of side effects indicate the drug is working?".

I Read It In "Oprah"

Yes, I do browse through Meagan's monthly "Oprah" magazine. I've found some good vegetarian recipes in it and some health articles which have been helpful and corroborate information we've received elsewhere. In the most recent edition there is an article from a woman who has ovarian cancer which reflected our experience and the direction cancer treatment is heading.

Turkey Tail Mushrooms

Went to our long awaited appointment with the oncology naturopath at Bastyr University yesterday. Adding to the anti-cancer team. Many pros and cons about this.

Meltdowns

You never know what might trigger it. Meagan has done such a fantastic job being positive, energetic, optimistic and hopeful - that when it comes - it's always a bit of a surprise and a conundrum. And a time for cabana boy to leap into action.

How to think about cancer

Here is a link to a very good talk on Ted.com about cancer and the new approaches to research. It's good, you should watch it - about 23 minutes.
Ted Talk

I stumbled upon this and found its approach in synch with what I've been learning.

Conventional Treatment, Clinical Trials, Alternative Medicine, and Attitude

These four components make up the legs of the chair on which we are sitting to get Meagan disease free. Given we have been fortunate to dodge the vicious blow of melanoma that strikes fast and hard and leaves little time, we are engaged in all of these areas.

Consistency

Two thoughts about this. From a Cabana Boy perspective, especially as this thing turns into a marathon (a good thing!!), I find it hard(er) to maintain consistent support. I probably do in reality, but sometimes I realize that a few days have slipped by, and they are days we haven't had to deal with anything, so as a result I've not had to be "on point" and constantly addressing the issues. They are certainly there, as the 8,000 pound elephant in the room. But aside from some chit chat first thing in the morning and a little pillow talk at night, I may not be addressing the emotional needs of my "client".

I Believe We Have a Game Plan

This ordeal has more plot twists than an Agatha Christie mystery. We have been mentally prepping for an in-hospital treatment of Interleukin-2 at the start of next month, under the supposition that the next scans (scheduled for the 29th of this month) will show small (hopefully) disease progression. We'd like to believe the anti-hormone treatment she's been on would have some chance of success, but we know it's small, so we are being somewhat realistic about what comes next. We suspected Kaplan would recommend the Interleukin 2 treatment as it is the last FDA approved treatment available, before pursuing clinical trials.

So What Do You Do?

A natural conversation starter at parties. But for someone who has left the "official" workforce, that's a question that sets off a whole range of responses to answers and an unleashing of emotions. Most guys are defined by what they do, not by who they are. So if you don't "do" anything in a paid sense, as in work for a firm or have some sort of craft or technical skill that enables you to earn a living, the answer you provide can make a big difference in how the evening goes, how you feel about yourself, and how that person relates to you. It also makes a big difference if the asker is male or female.

How Can Calm Days Feel So Strange?

News flash...nothing happened to day on the cancer front. No new tumors, no scan results, no appointments. Relative calm amongst the troops. Casey and I had a fabulous hike up to Twin Falls (exit 34 off I-90 just past North Bend). We did have a chance to talk about the cancer, and prognosis and pathways - and it was helpful. But mostly an enjoyable day.

One of the gifts

Casey is home for the semester and a gap year and is busy making plans and signing up for classes. His presence is and will be a great source of joy and strength as Meagan becomes disease free, especially through the nasty bits.
The gift is, this afternoon he said, hey do you want to go down to the art museum? We could and we did. We are fortunate enough to have the time to be able to focus on life and the kids and family and friends and dealing with all aspects of the cancer. And we can do things like this!!

Cancer Humor

Cancer of course is not funny. But we have used humor, albeit at times macabre, to help relieve the tension.  The power of laughter is well known. I'm not claiming it can cure cancer, but it helps you maintain a positive outlook and every nurse we have talked to have said that the more positive people seem to do better. Two humorous things came to mind today, one actually happening today.

The Latest Cabana Boy Challenge

It turns out that we are not going to be heading to Bethesda anytime too soon. We may end up at the National Cancer Institute at some point for participation in one of their clinical trials, but not now. The drugs Meagan are currently on, meant to prevent her hormones from stimulating cancer growth, will be in her system for minimally another 30 days (and possibly another 90 days depending on whether some of the drugs are classified as cancer fighters), plus 30 days after that, so the earliest we would go back there would be the first of May and more likely the first of July. That being the case we are back to our original plan.

It's a Long and Winding Road

that leads me to grey hair....

The twists and turns continue. Honestly it seems like just when you've mentally got yourself in order to handle the projected path, something comes and and bam! it all changes.