Good article for dealing with anyone ill.

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?ref=style

Saturday morning preliminary

We got a visit from Dr West who is Kaplan's partner and our weekend oncology doc. He took a look at the MRI from last night and didn't see any obvious tumors on the right side. He's deferring judgment though to the radiologist evaluation, which is still pending and a little more fine grain. But certainly encouraging news. We await the visit from the neurology weekend doc to undestand what they want to do over the weekend in terms of tests and doses and med types.

The goal of the nurses is to get her up and moving around.

Nick
206.920.7364

Friday evening update.

We are definitely here to at least Monday. Kaplan stopped by at 8:15 to check in and let us know a little the plan. He walked in unseen by us while I was giving her a pep talk, of which he approved. She has been pretty emotional today, a fair bit of crying, probably due mostly to the mini seizures she is experiencing in her right brain and the anti-seizure medication.

At 9:20 they finally arrived to take her for her MRI. Should be about an hour. No results until tomorrow. At some point Kaplan's partner who is the weekend doc will come and tell us results. We are expecting a tumor, which we hope is simply zappable by the Cyberknife radiation treatment. If there is no tumor, I don't know what they will suggest.

The rest of the weekend is then about getting the anti-seizure meds right. The neurologist will probably order the short EEG Saturday to see if the mini seizures are abating. If not, they change up the cocktail. So it's test, adjust, test again. When it's right we will be able to go home.

And schedule the Cyberknife treatment for the new tumor if that's what it is.

She is pretty sick of being here and lying flat. We hope her blood pressure is up enough that she will be able to be slightly more mobile over the weekend. She is anxious to get home to her boys, house and dogs.

Friday morning update

Neurologist was by. She confirmed based on overnight continuous brain scans that she is having mini seizures emanating from right side of brain, which is not where her original tumors and surgery and radiation were. An MRI might reveal a small tumor. That can be zapped by radiation cyberknife. In the interim, they need to get her seizures and blood pressure under control. So she will be here for a longer time until Kaplan is sure she can get up and around, which is more the blood pressure issue. The neurologist says she has lots of patients at home on many antiseizure meds. So she's pretty confident they can get those under control. Then if it is a tumor we schedule cyberknife zappage. Meagan knows all this and is ok. So we are waiting for our turn in the MRI room.

Thursday evening update

Her condition is a little more serious than expected after the seizures. Its not just recovery She apparently is having subtle continuous mini seizures. They have her wired up for an all night observation of her brain waves. In earlier shorter EEG tests they saw some seizure activity. She also is showing evidence of brain irritation on the right side which is not the site of her brain surgery. They want to do an MRI but are trying to figure out how to reduce her seizure meds (she is on heavy doses) to reduce the impact on her kidneys (so they can do MRI with contrast) and without causing a seizure. Plus her blood pressure is too low, despite medicine to bump it up. So a lot going on, not much good. She is unaware as of yet, as we don't want to worry her until they have the data. She has been very emotional today, probably due to medication. So we have been telling her they simply need more info about her brain waves to get the right meds and doses. She is fairly confused in general.

It could be that the right side irritation is another small tumor. Or brain wiring is just running amok for a long time and she will need more monitoring until they are sure she is stable before release Probably not going home tomorrow.

So disconcerting. Kaplan isn't sure what is going on nor is her neurologist. So they are digging for more data (thus the overnight brainwave evaluation) and want to get an MRI but have to get her weaned off some meds for that to happen.

Aside from all that she is ok. A little irritable. A lot emotional. Resting now and hopefully will sleep well tonight.

Good report 6:45am

She is awake and talking; doesn't remember much beyond getting into the car to come to the hospital. Probably out of ICU today and into normal room for another day of observation. Still on lots of anti seizure meds and meds to keep her blood pressure up. Kaplan came by at 6:30 this morning to check her. She will go on oral meds today and will be on anti seizure meds forever She's a bit fuzzy but remembers people and events. Time and passing of time are illusive comcepts But cognitively seems good and improving.

I keep telling her this is not about the cancer but a side effect of the surgery and brain radiation. I predict a slow recovery day today but complete recovery. And ready to carry on the melanoma battle when it's time.

Of course she keeps saying she's sorry for putting us through this.

Meagan is at Swedish in ICU

She is on a lot of anti-seizure medication. She has been seen by neurologist and her oncologist. Her blood pressure is quite low, possibly due to medication. So they are pumping her full of saline and if that doesn't work they will try some meds to up her pressure. 57/32 is low by any standard, she is normally mid 80/ mid 60.

She is mostly out. Sort of sleeping, unconscious. She has been able to be responsive. When her dad came by we shook her and she opened her eyes and after a bit said, "hi dad" before conking out again.

The neurologist will come by again in the morning. She said there is evidence of brain irritation at the surgery and radiation areas based on EEG and possibly continual small seizures. If it's not better in the morning they will get more aggressive. No new tumors. It was not a stroke. It means she will have to be on anti-seizure meds forever.

Hoping that she sleeps and recovers overnight. I'm by her side. The recliner here at Swedish is not nearly as good as the one at Harborview. The boys are at home, it's rough on them.

Meagan has had a seizure

We are at Swedish Hospital ICU. She is heavily medicated and unconscious. CT scan showed no bleeding in brain. No idea of timeframe to awakening or impact to brain. Neurology team and Kaplan are all over it. But nothing to do for moment but wait.

Surgery complete

Our bad ass girl proved once aagIn how tough she is. "just a bee sting" does not quite describe what she had to go through. Even though she gets numbed up enough eventually, there are still moments where the pain shoots up and while the surgeon is quick to add more anesthetic, it's still uncomfortable.

She walked out with two, four inch scars on front and back, leaving behind plenty of flesh and tumor. Surgeon took a lot so he could get plenty of margin. She will be sore for sure for several days. Ibuprofen and ice should help.

We had to skip our appointment with Kaplan in order to make the surgery and reschedule after waiting an hour past our appointment time. Just shows even if you think you've built in enough slack time when it comes to cancer appointments, the office will have an extraordinarily busy day. So no more trying to schedule two appointments in one day.

Now, off to make her as comfortable as possible.

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.

No U2

The effects of the brain radiation are a bit too much. Besides feeling a little fuzzy, her head hurts some and is irritated. So a quiet evening at home. The steroids should help, she's on a full three a day course with the taper starting Monday. Her side effects aren't unexpected, but the crowd and noise would have been too much. The fuzziness should diminish as her brain has proven capable of rewiring quickly.

But I would have liked to go to the concert.

The Four Things That Matter Most

I'm reading a short book with the title, "The Four Things That Matter Most", by Ira Byock, M.D.

The Four Things are words one should say, really at any time within our life, to anyone we care about:

Please forgive me
I forgive you
Thank you
I love you

There is a short passage in it that really struck me, so much so I thought I'd share it:

"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".

From Cyberknife to Realknife

Last brain radiation treatment completed. In a month, Meagan will have a followup brain MRI and they will see how they did.

But onward!

Monday she is scheduled to see Dr Kaplan and then we head two floors up at 2:30 to Dr Hanson, the surgeon, where she will have her stomach and back skin level tumors removed. It's done with local anesthetic and will take about an hour. More scars for our bad ass woman! She will just be on ibuprofen for a day or so afterwards.

So, hopefully we can have a nice relaxing weekend. Would be great if the sun came out as forecast as we got nosebleed seats for the U2 concert at Qwest Field on Saturday night. U2 is one of her favorite all time bands.

Last Day of Cyberknife

Here for her final brain radiation treatment. Everything looks good in terms of the treatment. No ill effects to speak of. They had to up the dose of steroids but that is not uncommon, she was on a very low dose. She was getting headaches but that has subsided now that she's getting a good amount. She will start tapering off them starting Monday, will probably take a week or so.

We also have a consult visit with her surgeon this morning about taking out the tumors on her back and stomach. They've been there a while and have gotten irritating enough that they should go, and Kaplan concurred. not sure when that will happen but hopefully just an in office procedure of low impact.

The best news of all is that tomorrow she is going to get her hair color restored to its "natural" auburn red color, hahaha.

If Cancer is an Earthquake

There are going to be tsunamis. I've had to deal with a number of tsunamis over the last couple months and their effects. It makes it pretty hard to be managing the earthquake zone plus the remote sites ravaged by the tsunami. This is all in code of course. Meagan represents the earthquake and zone of immediate impact and where a tremendous amount of energy goes to supporting recovery and rebuilding and thinking about and preparing for aftershocks. But there are the impact zones of the tsunami. And they take more or less attention, focus and support depending on unique circumstances. So at the moment I am stretched a bit thin.