Just to Clarify some Questions which have Arisen...

This will be a bit of a "technical" post about her disease, in response to some queries. Don't read it if you are not in to scenarios and details and would rather focus on Meagan as a person and the life she enjoys today.

Meagan's disease is at this point incurable. And therefore likely terminal, in some undefined timeframe. For the moment it is controlled. That means we don't expect her imminent demise, in fact at this point it looks probable she will be here for the holidays, something that means a lot to her. But controlled in the context of melanoma means you really only focus on the short term - it speaks nothing to any long term prognosis. Because she has a quite active disease, and melanoma is known for being capricious, unpredictable in its behavior and can "jail break" (surge and grow rapidly), one just has to be cautious in looking too far ahead and assuming anything.

Thanks to radiation treatments, the current tumors seem to be responding (shrinking), and the ones in her brain for sure are shrinking as a result of the last treatment. We don't know yet if her spinal tumors are responding; there is a temptation to extrapolate and assume that if the brain tumors responded, then it's likely that the spinal tumors will as well. But we won't know that for sure until her spine is rescanned (in the next 45 days or so). It's not safe to assume that any particular treatment is working until you have hard data (a scan) confirming an impact and it's not safe to assume that the trajectory will remain the same over time.

Melanoma has somewhat of a reputation for radiation resistance. It can be effective initially, but then can mutate or survive and continue to grow after initially shrinking. Even if the tumor has shrunk, some melanoma cells can survive. It can also return to a treated area. In the case of the brain, her tumors are being "spot welded" as Dr. Vermeulen likes to say. This means that the focal point of the radiation beam is the tumor itself and as a result of the technology the radiation burden/dose on the rest of the gray matter is not large. Obviously the more tumors which emerge (and even beyond the newly discovered ones we fully expect others to occur down the road) the more difficult it becomes. You can still spot weld them with the Cyber knife or Gamma knife, but the burden/dose on the rest of the gray matter starts to increase. So you start killing off more gray matter, and that causes long term impacts. One thing that can happen is that instead of 1-2 brain tumors emerging, there can be a lot which pop up. The Gamma knife can handle up to about 6. Beyond that they would recommend whole brain radiation. Once you go to whole brain radiation, you get one shot at that. There is only so much radiation the brain can take, and once you've had the whole brain treatment, and you get another tumor, it's game over. So that is why it is crucial to find some systemic way to stop the melanoma from spreading - and given there is nothing like that currently out there, why melanoma is considered one of the most deadly cancers.

With regard to her spinal tumors, she has been treated in two areas of her spine. We hope the treatment is working in those areas. Because she has an active disease it is highly probable that the disease will spread into other parts of her spinal column through the epidural space. If it sticks and grows in those areas, which we will discover through a scan or through symptoms she experiences, they will be able to treat those areas with the Tomo therapy radiation. But like the whole brain radiation, you get one shot at each area. The spine can only tolerate so much radiation. So if the cancer reemerges in a previously treated area, they cannot treat it anymore.

So that's why radiation is considered local control and palliative treatment  - it is short term and not a cure. It buys you some time.

She does have numerous small tumors on her lungs. For now, those are causing no problems, and are not being treated, although they could be zapped. Aside from a couple skin tumors, the melanoma has not shown up in other vital organs.

Absent a new drug discovery  - and at this point I have not been able to find anything in the pipeline which would suit Meagan - the only hope for a systemic cure to stop the melanoma in its tracks is a form of chemotherapy. The Temodar did not work for her. It has worked for a very small percentage of people, and those people have remained free of disease for a period of time - they aren't considered cured, but their status is referred to as NED (No Evidence of Disease). Dr. Kaplan has indicated he wants to try to new chemotherapy called Abraxane. Whether it is used alone (single agent) or in combination with some other drug (such as Avastin), it still has a pretty low chance of success. Even if it has some initial success  - melanoma shows an ability to adapt and get past it. For some, and there are anecdotal stories out there, it has worked to stop the growth. It hasn't proved its efficacy in large, controlled studies, but at this point it hardly matters; if there is a chance and there is nothing else, why not try it, especially if the side effects are manageable.

The only drug out there which has a reliable track record of producing durable responses in a limited number of patients is Interleukin-2. Generally 6% of patients will have a complete response and another 12% will have a partial response. This is a particularly nasty drug with major side effects. Even if you wanted to try it, you have to be off steroids (which Meagan is not due to her brain tumors and regular brain radiation treatment which causes swelling). Because of her seizure risk, it becomes less viable as an alternative. So unfortunately, IL-2 alone or in combination with some of the new agents being developed in clinical trials is off the table for her. At least until she has no brain tumors emerge for a significant period of time and is able to go off steroids and anti-seizure meds.

That's the picture as I see it. Very slim chance of Abraxane controlling the disease. Continued radiation of emerging tumors to control them as long as we can. Then at some point, the disease moves from controlled to uncontrolled, and runs its course. So we buy time and enjoy every minute of that time we can.

"No Side Effects" - hah!!

Even though she has a lot of confidence in her radiologist - her statement that the Gamma knife treatment wouldn't have any side effects is a bunch of bunk. Meagan definitely feels fuzzy, not able to think as clearly. Her speech is affected - hard to get words out and get the right words out and sometimes a bit of slurring of the words - so she is slowing down her speech to be understood. Of course it's enormously frustrating - aside from the whole disease progression thing. Hopefully temporary.

Update - direct from Meagan - dated August 11

Dear All,

This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~

So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.

On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.

This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.

Updates will follow.
Much love,
Meagan

Scanxiety (squared)

Meagan is pretty much a wreck tonight. Probably will be all the way until our meeting with Kaplan on Wednesday. Just trying to hold her and support her - this waiting is terrible and it's also the sinking in recognition that this could be a pivot point. Maybe not, it could be the next scan. But needless to say, this is not fun.

The Good, The Bad, and the Ugly

The good is that Meagan is feeling relatively good these days. So good that she has a hard time believing that she really has this horrible disease. Unlike many other cancers, she has not had to endure lengthy, debilitating treatments. Her "events" have been off the meter bad, but did not leave her feeling badly for any significant period of time. Her surgeries have been relatively minor, with localized pain, but requiring no more than ibuprofen. So after 15 months with living with the disease, a disease that can be very debilitating and require super hard treatments, she has not had that bad a quality of life. We hope that continues for some period of time. But I can sense the frustration and disconnect within her. She feels capable of walking, of being productive, even though she has some limitations cognitively and physically (no driving). So it's a bit like being in the eye of a hurricane - some events have passed by with severe consequences, there is this temporary respite (even the chemo she is on seems to have little side effects, not even much fatigue), but I at least know we have the rest of the hurricane to come.

The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.

The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.

Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?

Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her  - coupled with a discussion of quality of life and probability of success. Ugly...

Not for the faint of heart

Next Tuesday we have our first visit with the neurology radiologist about the overall brain radiation plan. We know two things at this point - that she has remnants of the removed tumor which need to be addressed, plus another tumor in a different location. The technologies to address brain tumors have evolved remarkably over the last decade and using a technique of focused beam radiation, the neurology team (radiologist, physicist, neurosurgeon) uses a plan based on tumor(s) location which is able to radiate (and hopefully eliminate) identified tumors. There is usually an initial visit to discuss the scenario and plan and what is achievable (that is our Tuesday visit) followed by additional brain scans to get the latest tumor information, followed by the actual treatment (which involves realtime CT scans and MRIs and a sophisticated computer driven robotic arm delivering precise amounts of radiation in a broad field pattern to identified points using a pattern which causes very little impact to healthy brain matter but ends up concentrating on the identified area). Because this technique does impact the tumors and brain margin around them, there is swelling (this is bad), which they control through steroids. If you are on steroids though, you cannot proceed to a systemic treatment like Interleukin-2, because the steroids counteract the Interleukin-2. So you have to address the brain first, then once it is under control, move on to the systemic treatment.

Only read on if you want to read about outcomes, probabilities, and prognoses. Seriously. Now is the time to "close tab".

New Duties, New Blog Title

I guess it was not enough to be a cancer cabana boy. I thought that was a pretty worthy challenge. It was a knee buckler at times, but the work was steady and the client great, even though the pay was lousy.

But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.

She's Home!

Meagan is happy being home. She got to kiss the dogs, although they nearly knocked her over (well, one did). She walked in her lovely garden on Casey's arm. Had a long talk with Casey. Ate high sodium Chinese food. I can't say our first night home was restful for me, but perhaps she will have a different take. She has to take pills at 9pm, midnight, 6am, 9am, noon and 6pm. So I have multiple alarms set. We also aren't letting her walk anywhere unaided, she's too unsteady and isn't used to her visual field deficit yet. So there was a 3am bathroom run. Bobbie Baker had a brilliant idea to get a baby monitor so when I am up and she wakes up she can call me and I can help her up and out of bed. We tested it at 6:15 this morning and it worked perfectly although scared the heck out of me as I was drinking my coffee. But she's back in bed and hopefully will sleep until 9am. It is a very unnerving experience to be in such a quiet environment after nearly two weeks of noise. Today will be a day of calm, and adjusting to her surroundings. We did have railings installed on the front porch steps, and I hope to get her out and down the block at some point today. But overall a smooth transition, she's happy to be home, in her own bed and chair, and with two of her men and dogs.

Friday Evening Update

Meagan is contentedly watching "When Harry Met Sally" on her laptop, snuggled in her hospital bed, wearing yoga clothes, with her cashmere shawl around her shoulders and her wool hat on. We enjoyed a hospital meal, although enjoy is not really the word I'd use. She is feeling quite good. She is very tired, overly tired due to the large number of assessments foisted on her by medical staff here. Most if it is all good, it sets the stage for therapy and insurance approval when they document her status. But it's tiring. And she discovers new things about herself - those insults to the brain. For example she has difficulty with numbers and dates. There are a litany of things about her which have changed, none of which are worth highlighting or listing. It seems too demeaning, and not focused on the positive aspects she retained. Many issues will resolve in time. She's still Meagan. We will pursue therapy actively, and are looking at options including a home based service. But she is tired of all the assessments and poking and prodding - she doesn't like to fail and when she misses something that competitive spirit comes out. And yet she is remarkably sanguine about it all. As Terry highlighted in her recap - she is approaching this whole thing in a very positive way. Over dinner I recounted the entire last two weeks and she has very little memory of it all. She is sick and tired of being here and wants to be home so she can kiss the dogs and be with Casey. But she will not leave with unpleasant thoughts about this experience or where she is right now. 

We've talked about the process and game plan for her cancer which we will develop with Dr. Kaplan once she is discharged from Harborview. She is aware she has to undergo radiation treatment and then two weeks in the hospital on Interleukin 2. She is quite fine about it all. Timing is all uncertain - brain recovery has to occur first.

In terms of discharge we are eternally optimistic. Her sodium levels have recovered to the appropriate levels - now they just want to see them stable and have decreased the intervals in between checking. They are using an abundance of caution, which is fine. "Que sera sera". When she goes home we want it to be for good. We've convinced the medical staff that we are going home after medical discharge and will deal with therapy on an outpatient or in-home arrangement. We've cited the Meagan's Fairies network as one example of the fabulous support we have. So all the wheels are in motion for discharge, the neurology team just needs to give the go ahead. Her numbers tomorrow morning will likely dictate their decision. It could be tomorrow or Sunday or Monday. We will let the docs do their job and exercise their judgment and we will be fine either way. Tomorrow really is a day of rest for her - she did have over 5 assessments today and they are just draining. Stroke victims need their day rest!!

I am incredibly impressed and proud of her - I do not think I would be approaching this situation with the grace and optimism and joie de vivre she displays. I think you will all be quite relieved and happy when you have a chance to visit or talk with her. And that bad ass scar - wow that is one impressive momento.

Nick

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).

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.

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.

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.

Medical Care Costs

This is not really a point of view about the new health care law, or attempts to roll it back. What I can share is how crazy our system is from the point of view about how insurance does or doesn't work. And then the more fundamental point which is about the overall rise in healthcare costs.

Reflections, Infections and Inflections

Cancer isn't an infection the way a virus is, although it feels the same. For so many ills and diseases the protocol for cure is well known, even though it can be a hard road. I remain impressed by the women we see each day at the cancer center, getting their blood draws, doctor visits, and then chemotherapy or radiation treatments. Their spirit and determination is admirable. I suspect part of what keeps them going is that they have a pretty good idea that the probability of success is quite high. Yes, they may have to live for 5 years not knowing if the cancer will reoccur. But given the treatments and the continuing medications (Tamoxifen) if you were in Vegas you'd bet on their success at becoming disease free.

Scan Day, Again

When you have a chronic disease such as melanoma, scans become part of your life. Hopefully at some point they become less frequent than our monthly ones at the present. Most patients end up getting them quarterly, and then managing aspects of the disease (i.e., tumor removal). The ultimate goal of course is to become disease free, but for melanoma patients currently that is not realistic, you simply want to be NED (no evidence of disease).