Mystery solved and proof you need an advocate

Throughout the evening her headache got worse and worse and she became incoherent. I got the nurse on it, who agreed something wasn't right. She paged the on call neurologist who got here about 11:30pm. Her suspicion - after exam was that they tapered the steroids too fast for Meagan and the swelling in her brain wasn't going down. So it was getting crowded and impairing function Rushed her down for a CT scan which took only two minutes. The CT scan operator's comment on seeing the images, "she must have one heck of a headache". Then radiologist reviewed and doctor increased the steroids. Plus some morphine to ease the immediate pain and get her to sleep. so tomorrow should be a much better day. But she had to endure a lot of pain today so much so she got nauseous What a lousy thing to have to go through. I felt so bad for her but am happy it wasn't something much worse. She should feel so much better tomorrow. And hopefully back to talking well and back to her old self.

Moral of story? If things start going south don't just listen to the old hounds. I'm going to give Ethel a piece of my mind when I see her next Be vigilent and don't assume. Insist on competent exam. Advocate. I raised enough concern they had to respond. Fortunately the doc who showed up had seen her when she was in ICU and saw instantly the profound negative change. Glad we stayed within the system. And glad they have CT scans that can crank out a scan in 2 minutes!

Pain management

Afternoon update : she's not doing very well. Severe headache. According to our wonderful nurse Ethel who has seen a lot of this, the pain waxes and wanes after brain surgery Meagan was trying to manage with Tylenol but the pain is too much and she couldn't even sleep. So she's agreed with all her men and is on to morphine. Well she wasn't exactly coherent but we decided and she didn't disagree The doc authorized up to 4 somethings she started with 1 and now she's finally asleep. We can keep escalating dose if she needs it. They are also looking into other things. She's never been great with narcotics due to nausea but hopefully we can find a balance. It's a relief to see her out actually.

It was a long night

Had to have a little morphine for the headache. She's s bit better this morning. Got uonand had breakfast. But now is slumping. Doesn't feel as sharp or articulate. We are told it's pretty common to have a bit of nausea plus headaches after surgery and it will wax and wane. she's a bit frustrated at her inability to articulate, feels less able than before. Is pretty tired of being here but can't be helped. She needs her medications and pain and anti-nausea meds plus as she is able to get going with speech and physical therapy.

Rough day

She's had a bad day. Pretty bad headache. A part of the healing process we are assured. Goes up and down. But it's been hard to manage and she's been in pain, shaky and nauseous most of the afternoon and evening. She's no wuss so I know it must be bad. The nurse is attentive up here in acute care, but they have to cover more beds and it's not quite as polished SS intensive care. Of course it's probably a big cost difference too. Could be a long night.

Update

She's continuing to improve, although likely long term right peripheral vision impairment.  Slept ok last night  Tiring day yesterday, despite desires, a few too many people showed up. First start of physical and speech therapy and that was exhausting. She has difficulty in several cognitive areas but those should improve rapidly. She has her spunk and zest and personality. Difficult decision ahead on her hair. Complete buzz, avante garde punk, or short sassy for what's left. Most of back and one side is gone already so frankly I think any route is good. She will be wearing  her massive scar with pride  A 10:00pm visit by Kaplan was the best nightcap.   He's reviewing some discrepencies in MRIs to figure out if in fact there is another tumor up there.   In any event he's building a treatment gameplan based on this event.  First step is rest and rehab, then radiation for remnants and any others, then on to Interleukin2.    Clinical trials in Bethesda are out for foreseeable future. They don't accept candidates with active brain tumors.

She needs rest today especially with room transfer and anticipated therapy so we are going to be strict no visitors. She's supposed to be transferred out of ICU this morning to a standard hospital room here at Harborview, not Swedish, because we really don't expect her to have to be hospitalized much longer beyond Monday. They don't discharge over weekend.   They want to get started on physical therapy and speech pathology intensely because of her field of vision issues. Once out she will need to continue these on an outpatient basis.  Once home she'll need support while she regains strength and motor skills and vision compensatory skills. She's already getting quite good at word circumlocution to compensate got her aphasia. 

Oh and her butt hurts from so much lying down. 


Much appreciation for all the love and support.

Hard to express how challenging this is

She's slowly recovering from her brain surgery. Has a bald head in back and one wicked horseshoe scarvsecured by staples. Impressive ny anybstandardvbut she's not thrilled about the hairless. Has weakness on right side and difficulty speaking and some vision issues. Daily improvement and self awareness. But this is a huge setback in the cancer battle. Clinical trials are out. She needs recovery time before radiation can be applied to her other brain tumor and remnants of first. Then weeks of recovery before interleukin can be used. That's a long time before a shot at systemic treatment. She's just becoming aware of the challenge. Boys are here and have been a huge support to me, their mom and themselves. Wevare so loved and supported by our friends and family. Thank you everyone. One day at a time. I should say she is alternately funny, frustrated, sad, and grateful for the love. She hasn't lost her personality wit and quickness. The words are hard to come. And she finds it weird and scary that she had this disconnect between mind and right side. But we are hopeful with time and rewiring it will become normal. I expect her to move from ICU in next day or two. We want her under Kaplans care to look at this holistically.

We are all pretty tired but sharing the load. She's never alone. tomorrow she'll work with a speech pathologist. Ok enough

Quick update.

She's resting comfortably in ICU of Neurology at Harborview. Will try eating and some physical therapy today. Frustrated that she can't find words to express thoughts. On steroids to reduce inflammation. Casey stayed with her last night. I got 7 hours sleep at home I got here early and he's back home to sleep. Riley slept at home too. Should make progress today. Starting to talk about where to transfer her now that she's out of critical stage. MRI last night was good. So out of immediate danger.

About as bad as it gets

In ICU at Harborview. Discovered she had two brain tumors yesterday. After returning home from oncologist she had a massive hemmorage of one of the tumors. She had brain surgery last night. She had quite a bad event. Prognosis uncertain at this point. She's on a breathing tube. This we did not see coming.

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.

We are going...

No matter if the government shuts down or not we are going to Bethesda - they will see us. That is a load off my mind! Now we can get on with the dance and find a clinical trial that is appropriate!

Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can't be on if you have a brain tumor. We didn't really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.

At least by Monday afternoon we'll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.

Latest news on impact of government shutdown

"As far as the shutdown: Things are changing hourly. The last we heard was that the Clinics will be closed and we will not see new patients during the shutdown. We will likely start seeing patient immediately once the government reopens. If you would like to delay your visit until we get word that the government is reopening we can accommodate that. Please be aware that there will be no one in the office during the shutdown and we are legally prohibited from checking our work emails during the shutdown. We are expecting to have a meeting with Dr. Rosenberg later today to get more information about how we will be affected and I will pass on any information that I can."

A Plan, subject to...

All the logistics are set for us to go to Bethesda next week. Got the package from the National Cancer Institute (NCI). Pathology slides Fed Ex'd yesterday, genetic blood tests faxed yesterday, brain MRI scheduled for tomorrow, and Monday we visit our oncologist (to review the results of the brain MRI) and pick up the CDs of all the CT, PET and MRI scans and linked reports to hand carry to her appointment. Check, check and double check. What could possibly go wrong?

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.

As if we weren't dealing with enough....

Life goes on. As we continue on this cancer journey, characterized by its roller coaster ups and downs (hard) and duration (thankfully long) - we still have the kinds of things pop up in life which happen to others. And they are hard and stressful. So you have to build this reservoir of emotional strength to deal with those events as they arise, and we've got one on our hands now.

Belief vs. Hope

One of the biggest challenges we face aside from managing the disease directly is maintaining emotional equilibrium. We all (by we I mean all of in the nuclear family) support each other in various ways. It's pretty clear Meagan relies on your truly, her cabana boy, for strong emotional support, along with incredible support from her posse of friends and family. As her pillow partner though, I often get questions that others don't  - especially in those times when she is feeling scared and vulnerable. Recently, one of the most difficult questions she asked was, "do you really believe I am going to make it?".