Last night was particularly rugged

There seems to be a pattern based on our visits to Dr. Kaplan when we get (bad) news. Actually we've never had good news coming out of his office. But Megan aways feels comforted by him, even though he is delivering bad news. He makes it seem not so scary, somehow gentle and hopeful. Not hopeful in the sense that she believes she is going to make it, but hopeful in the sense she will have enough time, that it's not imminent (like from a tumor bursting, although that could happen), and that she will get her projects done. In the course of this discussion, data and information is provided - and of course therein lies the source of potential conflict later - she hears one thing and I hear another.

We did then go and have lunch and then walked all around Greenlake. We talked candidly and openly about everything. I thought we were on the same page in terms of prognosis, timeframe, treatment steps and expectations, and in agreement on how it should end - hopefully gracefully, gently, surrounded by love and "sparkles".

When we got home, after talking with the boys, and she overhearing one of my conversations - she got pretty upset. Mostly related to the timing (she thought it was longer and my recollections of the discussion were more analytical and clinical while hers were more diffuse) and clinging to ways to have hope (not hope for making it but hope for living long enough that people weren't looking at their watch). Time has, self-admittedly, taken on a new concept for her since the stroke. She doesn't have a sense of it at all. So I think this, coupled with some challenges in comprehension, led her to having the full brunt of the news really sink in after we got home. So there were several hours last night when she was pretty over the top distressed.

But she has a remarkable capacity to rally and the resilience to adjust and move forward. We talked about how even if she lost the capacity to read or write that we could get people in to read to her or take dictation. She is reading a book called, "Dying Well" and I think that is helpful. Later in the evening she looked up and asked if I would be sleeping next to her when she is in a hospital bed set up in our living room (of course I will as long as it's a queen size). Then later she looked up and said, maybe not in the same bed, but next to me, apparently after hitting the section about hygiene and how it goes in the later stages. So she still has her sense of humor and is still a prissy girl.

We both agreed we have no idea how to do this, or do it well. We are just mucking through this process, and an unfortunate side effect is distress. But as Kaplan said during our visit, it wouldn't be normal if you didn't have periods of time when you weren't a mess - because this is tough stuff, the toughest ever.

So onward. I have done all the research on the GammaKnife process and can help Meagan understand it when we meet with our radiation oncologist today, Dr. Vermeulen. That is a more complex process than the whole brain radiation. I really can't even speculate which one will be done - Dr. Vermeulen had not read the MRI results when she had the phone conversation with Dr. Kaplan; she only gave a rough guess about a recommendation based on his description. I expect she will be certain today. The GammaKnife is a one day procedure, the whole brain radiation is done over a number of days. In any event it looks like we will be around to enjoy our beautiful garden and the nice days of August.

Drum roll...

We meet with Dr.Kaplan at 11:20. Which means it could be noon. We arrive about a 1/2 hour early so that Meagan can have her blood drawn, and this time around she has to have it accessed via her port and have that flushed - it needs to be flushed out every 6 weeks if not used for treatment.

Our game plan is to review the questions we have for him this morning. That will be hard. But we need to talk about the MRI results (and resulting plan), any systemic, whole body treatment which might be possible beyond what she is already on (the Temodar), and tumor identification and management (does she have a CT scan of the body or wait until symptoms present themselves and then we address them?). I do know that some tumors can be dealt with via radiation (Cyberknife), others by surgery. Meagan wants to get tumors out as soon as they can be identified, especially if they have the potential to be life threatening. Of course, at some point they won't be able to be removed or zapped, but here's hoping that is down the road and we buy time.

I'm bringing handkerchiefs. Our plan afterward is to take a walk around Greenlake and then have lunch. Being out and around people helps. First though, we will talk to the boys.

At some point we'll come home and I'll post what the story is...

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...

Audrey

She's sassy and smart. We are having a threesome.

There's me, Meagan, and.......Audrey - her wig. It appears the Cyberknife brain radiation treatment has a side effect other than brain irritation causing seizures. We are talking hair loss. Not just short hair, but falling out in clumps, patchy bald spots smooth as a baby's butt hair loss. All in the back. So right as she is a couple months out from her brain surgery and buzz cut, and she's moving from Sigourney Weaver/Demi Moore buzz to pretty short but pixie-ish fun haircut- we have major patchy spots happening. Thus Audrey.

We bought the wig back in the Fall when we thought she was going to undergo chemo and lose her hair. They don't take returns when you've taken a wig home, so it's been in storage. How handy. She made a public appearance today. It needs a bit of trimming and styling, but it looks very good on her.

But she probably needs to undergo another full buzz cut. Otherwise she is going to eventually have long har in the front and uber short hair in the back. And it may take a while before the hair returns. So I am getting the clippers ready.

Surgery Day, Again...

Meagan has surgery to remove a couple skin tumors this afternoon. It sounds sorta easy but it's not that easy. They use local anesthetic but that still means she has to put up with a couple nasty shots on each side before it kicks in. She will end up with 3-4 inch scars on her tummy and back. You'll probably not see her in a two piece bathing suit this summer, not that you would have anyway, hahaha.

She's still a bit fuzzy mentally and I'm not sure whether it's related to the steroids she is taking for brain inflammation or the result of the brain radiation itself, which did have to go into some healthy tissue to assure getting all the cancer. It makes her a bit frustrated and she's not able to do much in the way of usual household tasks, and forgets where things are, like where we keep cereal bowls. But she works it out and I am happy to help while her brain recovers. She spent most of the day reading yesterday, which is good as I think that helps her recover more quickly.

We see Dr. Kaplan first, to have him check out a few suspicious things. It may be that he schedules her for a CT scan later this week, as we also are scheduled to see him next Tuesday.

People have been sending me articles that appeared recently in some of the major new publications, mostly about two announcements made at a recent melanoma conference. Regrettably, the one drug they announced, which is really great news for about 50% of melanoma patients, does not work for Meagan as she does not have the mutation (B-RAF) they are targeting. The other, Yervoy (formerly Ipillimumab), is one she was on and it did not work for her. Both are major breakthroughs, one because it is using genetic profiling as a way of targeting cancer treatment (which is the wave of the future) and Yervoy uses the body's own immune system to attack the cancer.

We do know she has one mutation, HLA-2, which is being used as a pathway for melanoma targeting and treatment in a variety of clinical trials. That was the trial we were headed to in Bethesda at the National Cancer Institute, before the discovery of the brain tumors, stroke, surgery and radiation treatment. That is still a potential option for her. But they require one to be free of brain tumors for 90 days. She has been without any attempt at effective treatment for so long that she really can't wait and do nothing. That's why the game plan is to try to get her to be able to get on the Interleukin-2, an approved FDA immune system treatment (but a brute force one, not targeting any specific mutation) ASAP - which Kaplan says will be in about 7 weeks - because the brain needs to be healed before you can start that treatment. If she does that treatment and she is one of the 5% responders - that would be obviously fantastic. If not, and her brain MRI is clear 90 days from essentially today (and she would have already completed the IL-2 treatment), she would be eligible for the clinical trial back that which targets that HLA-2 mutation. So we have a couple treatment options ahead, now that her head is cleared.

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.....

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.