24 on the 24th

Despite all Meagan's travails, life moves on. Believe it or not, Monday the 24th is our 24th wedding anniversary. It is particularly poignant because we know it is pretty likely our last wedding anniversary together. She isn't in condition to acknowledge it with a blow-out celebration or big evening out. It will be quiet and meaningful. We've had a good run, lots of ups and downs over the years, but we've learned and grown and built a relationship for which I am very grateful.

She has of late been very concerned about the burden she is placing on me, mostly, the boys somewhat. I reminded her about the "for better or worse, in sickness and in health" vow, and that it was a vow. But I probably would not have been able to sustain the level of support she requires had it not been for all the heavy lifting we did in the earlier years of our relationship.

Regrettably her overall morale is ebbing and she could use a boost. She faces a lot of headwinds in the weeks to come. While we have enjoyed tremendous support from our friends and family, the long march we are on has led to periodic dips in communication. We are in a bit of a dip right now, and I'd love to get her some emotional support between now and our anniversary.

So if you haven't sent her a short note or card for a while, would you consider doing it now? It needs to be short. Maybe 24 words?

Her email address, if you'd prefer that is:
mabmacphee@mac.com

Our home address is:
5117 48th Ave NE
Seattle, WA 98105

I can assure you she reads everything that is sent her way. It is hard for her to respond, but she gets great delight in reading them and talking about the cards or notes with me.

"Promise you won't forget me"...

I was only walking to the store and back with our dog.

But her tearful question was clearly loaded with more meaning. Part of it was due to some upset at her part at not being able to shoulder any of the load of running the household. And wanting to find something she could do for me, but can't. A much larger part of it was wanting me to remember her as she used to be - the vibrant, capable, smart woman I married. Not the person she has become. Reliant on others, unable to contribute. And part I suppose is based on recognition of her mortality and being gone, and not wanting me to forget her generally. It was such a gut-wrenching question and I could see the fear and worry and insecurity written all over her face. It must be just so terrible to have your mind slowly robbed of its capability and to have various insults delivered to your body which reduces your capacity to function as you once did.  Then you add the worry that your life partner is getting used to doing everything on his own and it probably confirms that you are on a particular path.

Last night she made a comment to me about how she hoped she could be the partner I married. I tried to reassure her and told her that when I looked at her I was looking at 24 years of marriage and 24 years of memories and not the person she was at that instant. So not to worry about trying to be something today she is not - because I love her for all she is - which takes into account all the years.

What a difference a year makes...

I've written about "Scanxiety" before. It used to be that from the day of the scan until we got the results, there would be a lot of tension. We'd be hoping for clean scans, and when we got the news (which to this point has always been bad) there would be a lot of sadness, anger and worry. We've also had a few false messages about the implications of the results - such as from her last spinal column CT scans, when we went from an initial communication over the phone  of "untreatable", to "possibly treatable in a couple months with chemotherapy", to "treatable with Tomo therapy radiation".

Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.

So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.

But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.

One Year Anniversary

Today marks the one year anniversary from the time we got the call from Dr. Kaplan to tell us that is was metastatic melanoma. It ranks pretty high up there on the worst days of my life meter, followed two days later by us having to skype the boys separately and tell them.

Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).

We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.

Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.

As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).

So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.

Treatable...uncurable - what gives?

The state of cancer treatment is still in its infancy. The big three modes (surgery, radiation, chemotherapy) are still the most used (and most toxic and harmful), even if mostly successful. The emerging treatment of targeted gene therapy and use of the body's own immune system to kill off the cancer (after first finding a way to "open the gate" to the cancer cell as it were), is still a long way from proving effective or creating a durable response. If you have an immune system cancer such as melanoma you are really screwed  - because if your body's immune system can't defeat the cancer or the latest therapies don't work for you (as is the case with Meagan), then you are buying time. And you have to use the old line methods (I hate to even call them "treatments") to control the cancer as long as you can.

In her last email Meagan made an observation that she had been given a little hope because we had been told the cancer was incurable, but then another doctor had offered an option which might help the cancer in her spine (the Tomo Therapy radiation treatment - which she has started). I don't edit or correct her emails - after all when it takes her 2-4 hours to write the darn thing who am I to play editor. It's the overall content and tone of her emails which count, not the details. That is among the many reasons I write this blog (but not to correct my wife!!). I am trying to do many things (it has evolved as this adventure has continued), some of which may be useful to people down the road when they become caregivers or cancer patients (probably most of us). Besides helping everyone understand the particulars of how Meagan is doing and her experiences, it is also to describe the impact on us as human beings and husband and wife, the medical processes and decisions, and the real life issues which come up when you are dealing with cancer.

So one point of clarification to her past email. We know that her cancer is incurable. There is the slimmest of possibilities that she lives long enough that some drug gets approved that she is able to take which will give her some long term durable remission. But drug approvals take a very long time. All the drugs in the melanoma development pipeline are targeting very specific genetic mutations, which we know she does not have - so there would need to be some new development of a drug in the near term and it would have to go through a very fast track process to be approved - which in rough terms would mean 2-3 years. She likely does not have even close to that much time. She is ineligible for any clinical trials due to her brain tumors and seizures - so she can't jump to the head of any line of research drugs.

She is aware of all this - even if she forgets or gets fuzzy on the details. She realizes that we are in a situation of tumor management - slash, burn or poison the tumors as long as you can to extend your life at as high a quality as you can. Those methods are not really treatments per se, they are methods to keep the disease in check in some way. So they are treatments without an expectation of cure. They do matter for sure. Because unchecked tumor growth eventually causes death - but before it does so it can cause a lot of debilitating effects. That is why the news we initially got - that the cancer had spread to her spinal column and that it was untreatable (not, in her words, "incurable") was so devastating, and why the emotional swing was so dramatic when we found out there might in fact be a treatment (the Tomo Therapy radiation to the spine) that would have some effect on the tumor growth there. It is why this last three weeks has been the hardest part of her life (because thankfully she doesn't remember anything about the stroke or craniotomy or seizures). Because once it is untreatable and you have to let the disease takes its course - then all that is available to you is pain management. If you are "lucky" you get the disease in a place that doesn't cause pain (such as the liver). Having cancer in the spinal column is a really bad draw of the cards (even if not all that surprising given the cancer is in her brain and it's all connected). Because the way it advances in the spinal column is by growing and putting pressure on nerves. That can cause many things, well before it advances enough to do you in. Like pain, and loss of body function below the area on which the tumor is impinging.

So we like this new "treatment". It offers the possibility of control of the spinal column cancer, in the area being treated. She also realizes this is only affecting the area under treatment - cancer could already be growing elsewhere in her spinal column or in her brain (we know it is growing elsewhere in her body too, but those areas seem benign for the moment). So what is likely going to be our schedule over the next number of months is rounds of scans and treatments. She will complete this treatment by mid-September. She then has a brain MRI scheduled as a thirty day follow-up to her last brain zappage. If they find anything they will treat it (zap it). Thirty days after the completion of the Tomo Therapy radiation they will do another detailed MRI of her spinal column. If they find anything, they will zap it.

So it's a cycle of scan and zap. She's already being poisoned - she is on the chemotherapy called Temodar. It's possible Kaplan might want to switch to a different one in a month or so - which is more toxic and has more side effects.

Her biggest concerns at this stage are loss of mind and pain. Continued zappage of the brain takes its toll (because as targeted as the Cyberknife is, they take a bit of margin, and that is loss of brain function). If the cancer really blooms there and she has to do whole brain radiation, that is a scarier proposition. We are hopeful the Tomo Therapy radiation controls the cancer in her spinal column because she does not do well on pain medication and it will make her loopier than she cares for.

So we are realistic about the nature of the disease. She understands possible paths, although does not want to think about them. Nor do I. She very much is trying to live in the now and appreciate and enjoy what she has - and going through a round of treatment that might be relatively benign is a good thing.

We knew she had malignant cancer the first of July of last year. At that time we thought she had breast cancer. It was almost one year ago - September 1st - that we got the call from Kaplan to tell us that it was not metastatic breast cancer (a tough enough battle but one which most women are winning) but metastatic melanoma. That meant that she had metastatic melanoma for at least the prior four months before the July diagnosis (she first identified the lump on her breast in April). So she has unofficially had Stage IV melanoma for over 17 months now. And still alive to tell the tale and we are not expecting anything imminent in the way of a near term demise. Believe it or not that puts her in the category of a long term survivor of this disease. Especially given that it is in her central nervous system. So we are grateful that she has made it this far. And that it appears we still have a ways to march ahead.

Which we could not do without the love and support of all our family and friends.

Plan Finalized

11:30am, each day starting on Thursday (unless he can't get the plan completed by then, in which case it will be Monday).  Still expect 3-4 weeks of daily treatment.

I think Meagan gets how this is a positive development in quality of life and not merely life extension. I don't think she realized that spinal tumors don't really cause end of life, although they can eventually, when they grow so much they impinge on the nerves going to vital organs. More typically, spinal column tumors lead to compression of the spinal cord, which causes pain (a lot) and usually loss of bodily functions below the areas involved. The presence of the tumors and cancer in the epidural space means the cancer is fully active in the spinal column and central nervous system (including the brain, which we knew). So when you can't treat the spinal column tumors, and you suffer the debilitating effects they cause, it usually means that when they emerge in other parts of the spinal column and brain, you decline further treatment, because you are extending life, but at a greatly reduced quality.

So this Tomo Therapy is fantastic news. It is a means of control of the tumors. If we can zap tumors we can keep her quality of life high and gain life extension. It is worth treating further brain tumors and other tumors. They can use the Tomo Therapy on other parts of the spinal column if necessary (but you only get one shot at each area - due to toxic radiation overload concerns). Between that and the Cyberknife, the radiologists have a pretty good arsenal to control the central nervous system tumors, as long as they emerge in a localized and smaller way. This technology development is really amazing. Yes, it is expensive. Yes, it makes our overall health care costs go up. But who would not want to have this treatment now that it is available?

I Can Do It...

What "it" is, can be left open. But it is more uplifting, has a positive connotation.

These were the words (essentially) Meagan uttered as we were driving back from seeing her Dad (plus numerous other assorted relatives) out at their beach place in the Port Ludlow area. She was pretty relieved to have a day which didn't involve thinking or talking about cancer - just a fun time with family.

But as we were driving across the Hood Canal bridge - she wanted to talk a bit about her disease. The hardest part for her seems to be reconciling the highly probable outcome with hope. If you have no hope, how can you function? We've talked about various ways to look at it. For example, to just live in the now, live in the moment, and make each day meaningful. This latest approach seems helpful.

Because the "it" could be anything from a treatment, to a scan, to a surgery, or to a process at the end. It's like the swiss cheese theory of tackling big projects - take a bite here and there from what might seem a huge block of cheese and pretty soon it's gotten a lot less weight. While the project at the outset might seem daunting (eat that whole block of cheese??), if you focus on one bite at a time and do it and celebrate its achievement, that's a good thing. It's progress. Similarly, while she can live her life meaningfully and be in the now - she can also make it positive by focusing on one thing at a time - whatever "it" is, and being told - "you can do it" seems helpful. And it opens the door to doing things well at different stages of the disease, depending on progression. And having some optimism and support.

It's fascinating how the mind works...

Corn Flakes

The body and brain and are mysteries. I feel like a detective, trying to assess Meagan's physical and mental condition and adjust each day to suit her capacities and inclinations. Yesterday (Wednesday the 27th) was a pretty good day for her. By the end of the day I thought the right balance had been struck between rest, rehab, and relationships. She was able to get some stimulation and work parts of her body and yet also enjoy some times with family and friends. And funny enough, her body continues to crave and demand certain things as it attempts to resume control over her sodium levels. So Ritz crackers remain high on the list - munching quite happily 3-5 with each "feeding" as I term it of her pills.

Of course I'm worried...

true, the brain MRI was only for the National Cancer Institute assessment we have on Thursday. It's part of their protocol because they want you scanned from head to toe. And some of their clinical trials exclude you if you have a brain tumor. Meagan had one brain MRI early on, and Kaplan told her, "your smarts are all there", and no evidence of tumors then. But that was then and this is now. We know the cancer has spread throughout her body. I know that melanoma likes to go to the brain after the lungs. So while there are no symptomatic reasons to be concerned, it is a scan, there is a possibility there is something there, and the repercussions would be epic.  I hate this job.

I mean, I wouldn't want anyone else to do it. But the uncertainty and having to be ready is really hard. I know there are effective treatments for brain tumors (gamma knife surgery, which is targeted radiation). But it would still be very challenging news and cabana boy would be working double overtime to handle the fall-out. At least we will be hearing the news from our oncologist. And we are headed to Bethesda for the best treatment possible, irrespective of where her melanoma is landing.

Alright, a plan...

We are now scheduled to head back to Bethesda and the National Cancer Institute (NCI) located within the National Institute of Health complex next week.  Our appointment is Thursday morning at 8:30am until they are done, so we fly out Wednesday and back on Friday. We've got a lot on our plate here with Meagan's dad's health issues so no time to relax and make the trip fun. The NCI process is pretty interesting. Read on if you want the details.

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.

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.

Yervoy

Yervoy is the new trade name for Ipilimumab, the drug Meagan has been on for her melanoma. She's finished with her course of treatment (it was 4 infusions of about 90 minutes each time, over a 9 week period). She got a scan at the start, one at the 12 week mark (tumors grew, bad sign) and has her final 16 week scan this coming week.