Neurosurgeon makes an appearance late this afternoon...

Planning on putting a brain shunt in - one end drawing fluid out of a ventricle in the brain, the other end into her abdominal cavity where it gets reabsorbed. Probably between now and Thursday, depending on availability of a general surgeon and she needs to get her blood counts up so they are going to give her blood. This should do the trick to relieve the pressure. It will have a valve in it that can be opened and closed depending on the need to do chemo into the brain directly and spinal fluid. He is also going to start her on some different meds to draw fluid out. Plus something else to get the nausea under control.

He was not a fan of doing the whole brain radiation - thinks it's pointless if the fluid has cancer cells and the brain just gets reseeded. Glad Dr. Kaplan is back tomorrow to referee. He will be a welcome sight as it is clearly complex in terms of what to do next after the shunt gets put in.

The surgeon did show me the detailed MRI where you could see the teeny cancer cells/tumors lining the walls of the ventricles and also see lots of other teeny tumor activity elsewhere.  Not good at all.

"Honey, I've loved you every step along the way"

she said this to me earlier today, in a moment of lucidity, although I know she didn't mean it 100%. I mean, I have been a pain in the ass at times, so there were a few steps that more likely ranged from "strong like" to "neutral" than love.

We did get a chance to talk this morning, around 7am. She was alert and thinking and it was the first time I could tell her what happened and what the story was, and what to expect. She knows she's in tough shape. I did tell her I did not think she would die this time, here in the hospital, that this was an episode from which she'd emerge. But that given where it is and how it has presented that while we could buy some time, we wouldn't beat it. So she gets it. And that's when we exchanged some lovely sentiments.

I also told her that it must be difficult seeing two of me...

Monday morning update

She slept pretty well. Early this morning she was awake and alert and we were able to talk. She was pretty lucid. She ate and drank some. Unfortunately she has double vision.

I've exchanged email with Dr Kaplan so he's aware. He's back tomorrow.

Devil's trade-off

She's not in pain. But she's completely wacked out. Incoherent. Not sure which is worse. This is no way to exist. She hates it But it's likely how she will exist at least for the next day or so, until we reach a decision about what to do. Even then, it's likely to result in a compromised state, with a shunt draining fluid from her brain.

It was awful yesterday, listening to her lament about the pain. She kept asking me why it hurt so much. Today, it's a different - all she can do is lie there, asleep. Only brief moments of consciousness and then she's not at all lucid. It's times like this that I wish for her sake it would end. Why does the end have to be a choice between these two awful states?

Maybe this will end up being an episode from which she can recover and still have a reasonable quality of life. But if this is a harbinger of the final glide path, it is not the way she would want it.

I just got off the phone with her radiation oncologist (on a Sunday) and she said that yes, there are tiny cancerous cells at the base of her brain, like snow but enough apparently to clog things up and create the pressure. She wants to do whole brain radiation to melt those away. It would be twenty treatments In the meantime she thinks the neurosurgeon should put in a shunt so the pressure can be relieved. That also provides a way to dump chemo directly into the spinal fluid if Kaplan wants to go that route.

Nothing likely planned for today

Oncologist would prefer we just keep her stable and out of pain. He's got a call in to neurosurgeon to discuss but as he said, it's elective at this point so let's go slow. Not going to be discharged anytime too soon. Likely a procedure tomorrow or Tuesday - but they may want to do a spinal tap to diagnose more.

Likely culprits are new tumors or cancer cells in spinal fluid.  This week will be complicated - getting her in for Cyberknife in the near term, whether she can even do chemo (her blood counts are way down), and then diagnostic and pressure relief procedures.

This is not at all a good development.

We wait.

She's resting, kinda knocked out from drugs. It beats pain though. We await conclusion of medical team on how to proceed. Of course we don't know if they've even talked yet.After all iIt is Sunday morning. And she's stable. So it could be late today. And they may want to take babysteps.

At Swedish Hospital

Meagan is in quite a bit of pain (headache) due to the excess fluid on the brain. It can be controlled by medication, but it took quite a while to get it figured out. It's a narcotic, which makes her nauseous so they add anti-nausea drugs first. Around 10:30 last night they got both in her which knocked her out until 3:30. She woke up then due to pain, got sick, then they got her another dose. I got the nurse to have the doc get her on a regular schedule and a pump so she can control it. That should help and at a minimum get her stabilized from a pain perspective. But it has been a very rough 24 hours for her. Her nurse Lizzie is very nice and competent. I like her doc too, he's Dr Kaplan's partner standing in while Kaplan's away. Although we will try to hold off major decisions until Dr Kaplan is back.

Today the neurosurgeon and neurology and oncology team will huddle and figure out what to do. They need to find a way to relieve the pressure, figure out what's causing it, and come up with a solution. But it's a grim turn of events. It likely means there is significant involvement of the cancer in the spinal fluid with cells blocking the normal flow. Or maybe one of her new tumors is gumming up the works.

I really dislike being here for lots of reasons. It's the right place for her to get the care she needs. Personally, it's impossible to sleep with all the constant beeping.

Another chapter.

ER, again

My premonition was right about this day, if the reason was off. Battled head pain and nausea all day. After talking to on-call doc twice, we decided to bring her in to ER. Good thing. Because her head was hurting so badly and fact she has two new tumors there was concern about bleeding, and she has a history. Turns out that was not the issue. The issue is swelling, a buildup of spinal fluid in the brain. Neurologists are evaluating now. Not clear yet on cause or solution. She's on pain meds and anti-nausea and saline for dehydration. She's resting, pain easing a bit. We are on standby until ER doc and neurologists have a game plan.

I'd hold off coming here until we know what's up. Casey is here with me and so is Meagan's sister (Riley is out of town).

No call to doc, yet

she was able to walk - slowly and scarily, with my support, to the family room. The side effects listed for Abraxane include weakness and dizziness - which could explain her instability. Add the shaking she was already experiencing from the steroids. They also caution about getting up too quickly, so it may be that we just have to move very slowly.

Why does this always have to happen on a weekend?

Of course it doesn't, her stroke was on a Monday, her seizures a Wednesday and her recent pain episode on an early Thursday morning. Still...

Dreading the day ahead...

I hope I am wrong. But I have a really bad feeling about today. Yesterday she was very unstable, the only time she walked on her own was yesterday morning as we entered the hospital to check in, and she got very unstable and had to sit down and from then on, for the rest of the day she was in a wheelchair. When we got home in the afternoon, she was able to walk from the car up to the living room with my assistance, but then her legs started spasming and gave out and I had to carry her to her chair in the family room. She spent the entire afternoon and evening there, napping, reading, eating and chatting (not needing to use the bathroom). When it was time for bed, she tried walking to the bathroom, but the same thing happened. I finally got her in bed, and she is sleeping soundly. But throughout the night, her legs have continued to spasm, although not as frequently as when she had weight on them.

So I am poised to call the on-call oncologist this morning (Kaplan is out of town). We will test her legs when she gets out of bed (with my assistance). If she has any difficulty, I'm calling. I don't know if it means a run to emergency, or just check in to the hospital. Or wait until Monday. What should happen is a scan of her spine. I suspect tumor involvement impacting her leg function. It would be consistent with the pain she is experiencing (which is now masked by the medication). It would also be consistent with her prior spinal tumors. Hard to believe it is medication related. Whether it is locally recurrent and can't be treated again (her spine from T-11 to L-4 had tomotherapy radiation) or in another section of the spine which can be treated is the question. There are only two treatments - chemotherapy and radiation. In any event, since the chemotherapy is already happening, radiation wouldn't start for a while and takes even longer to have an effect. So if it is cancer which is causing the instability and loss of leg function, it means she will be in a wheelchair for a while, if not forever. A dramatic and ugly turn of events. Emotionally and physically.

Thus my dread.

more zingers...

On the way in the car to get her MRI this morning, Meagan started reflecting on our friends. In a very good and positive way. She was marveling at how many of them, now with kids having fledged the nest, were embarking on new adventures. Between new hobbies, travel, volunteer and career opportunities - many are redefining themselves and opening up to aspects which have been lying dormant. It is a great thing. Then she asked me - "are you sad that we are not able to do that?". Answer - "heck yes". Who would choose being a cancer victim or cancer cabana boy? It is terribly disappointing to have this yoke around our necks - especially with little prospect of relief or a better future, certainly a better future together. So we commiserated together - partners in previous good times and now partners in a tough journey.

Meagan brain update.

> "Only" two new small brain tumors. Will cyberknife them next week. Probably the best result we could have hoped for at this point. Pain in her back is now controlled with the new medications. But she is very unsteady on her feet (she used a wheelchair throughout medical visits today) and I had to carry her into house. Hope it's just the meds or chemo. Napping comfortably at home now.
>
>

Pain management.

In terms of her arm/shoulder/neck pain Kaplan does not recommend further diagnosis (spinal tap). Since it's likely cancer in the spinal fluid, you can't radiate it and chemo is only option and since she's on chemo anyway (her blood counts were ok and she's hooked up as I write this - happily munching a roast beef sandwich) he felt like additional testing wouldn't alter the treatment.

In terms of her back pain, the area she is feeling pain is in an area already radiated by Tomotherapy. Which can't be radiated again. So not much point in scanning it. Have to hope the chemo works and that the prior treatment is still working. So in meantime he's bumped the dose of the nerve pain med and added to the general pain meds. Of the non-narcotic variety.

So a lot of hopes pinned on the chemo and radiation. Both of which have historically very low success rates, sometimes slowing the cancer down for a while.

The disconcerting info is that where the pain is now, is where it will be in the future, barring treatment success. So pain management could be huge moving forward. Including having to move up to morphine. Which means a host of issues to address on a long term basis - nausea, loopiness, fatigue.

She's trying not to think about all this.

Cancer equals Pain

Rough morning. Her back was really hurting - it does not seem to be responding to the gabapentin and steroids the way her arm and neck did. Probably will get another medication from Kaplan today, as well as get a scan scheduled to diagnose the back issue.

It's becoming more evident that the tumors and cancer aren't playing nice. The skin tumors never hurt her, and she couldn't feel the brain or lung tumors (she has no recall over the stroke from the burst tumors). But cancer of the spine - those things hit nerves and that means pain and that is just not good. It is debilitating in every sense of the word, she can't think or do anything. She had a bit of a freak-out episode she was so frustrated by it. So we've got to get a handle on this.

Gearing up

No medical appointments today. Tomorrow we see Dr Kaplan.

First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.

The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...

We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.

In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.

Thank you!

To all who sent cards and notes to Meagan (and me) over the last few days - my sincere thanks. It's made a difference for Meagan and perked her up a bit. She's pretty unstable these days so other than trips to medical appointments spends most of the time in her cozy chair by the fire. Reading the cards and reflecting on her friends gives her great pleasure and for a brief time expands her world a bit.

Results from neurology tests

They did discover what her arm pain is not caused by. It's not caused by a kink or tumor pressing on a nerve that might be located anywhere from her finger tips to her spine. So that process of elimination leads to only one conclusion. That it's coming from inside her spine.
To verify that, he'd need to do a spinal tap, which is his recommendation to Dr Kaplan. We will discuss it with him Thursday and I'll email him today. It may be that Dr Kaplan agrees or says it doesn't matter. If it is cancer cells in the fluid they may not be able to radiate and could only treat with chemotherapy. So the chemo that she is on may be the only treatment anyway, or maybe different kind or a combo.
Its frustrating and concerning. It's good that for now the pain is managed and ok. We know she had cancer in her spine that was treated and figured it would spread. This just could be an indication that it's spreading further.
A crummy wedding anniversary present.

More new territory

Meagan has aways been a leading edge kind of person. Whether it be fashion (best dressed in high school) or design or relationships. She has redefined how I view relationships, bringing huge doses of warmth, energy and empathy to many. In our relationship she was always fearless, bringing up topics and issues she felt we had to address. Our house has been a canvas for her personal style and self-expression and her desire to break out of the mold. She has been passionate in her pursuit of family traditions and bringing as many people around her during the holidays as she could.

All this is context for ANOTHER ground-breaking discussion this morning. Talk about thin ice and unbroken ground. It caught me completely off-guard. We started talking about Thanksgiving and how we'd pull it off the way she wants, given her limitations. I reminded her of the volunteers who offered to help and not just participate. That led to a discussion about traditions and she talked about her dear departed grandma's cinnamon rolls on Christmas morning and how Meagan has made them in our household and she wanted to make them this year with my help, which I willingly agreed to do. Then the surreal hit.

She got very teary and started talking about and worrying about and becoming very sad about what would happen after she is gone. Would we (the boys and I) make her grandma's cinnamon rolls? Would we get rid of all the colorful furniture and buy brown Pottery Barn furniture? Would we paint our beautiful walls beige and white? Would we stop hosting (extended) family holiday celebrations? Et cetera.

Wow!

I understand at some level the concern - would we carry on traditions and retain her personal imprint on our house and in our lives so we continue to remember her and who she was. She's concerned we don't value her uniqueness and the special elements she has brought to our lives and that with her passing, we'd erase those, and end up erasing our memory of her.

Naturally, I reassured her as best I could, given I hadn't even thought about this. She admitted that the medications might be driving a lot of the emotion and thoughts. But it was a very poignant conversation and the deep fear and concern about carrying her legacy forward and remembering her was evident. I just need to add another element to my cabana boy duties - convincing this remarkable woman that she will never be forgotten and that her legacy and traditions will carry on.

Explaining

When the kids were little, the bail out statement was, "because I said so". Of course it was a cop-out and not respectful of them. But sometimes as a parent I was tired and I'd explained it already and I was just ready to not discuss it anymore.

It didn't work too well with kids and it sure as heck doesn't work well with an adult. But there are times I would sorely like to use a version of it with Meagan. I think I've become a patient person. You pretty much have to or you'll go nuts. (When I think about how much time I've spent in waiting rooms over the last 16 months it's staggering.) It takes a long time and many repeat questions for her to grasp certain things. For example, I respect her right to understand the medications going into her body and want to satisfy her need for information. When we make a change, she wants to know what and why, and it takes a while for her to understand the change and she also wants to correlate that change with what she feels (such as pain or degree of wooziness). Totally legit.

l wish I had the patience of Job to do it well all the time. I do not and I do get exasperated at times. It's the caregiver's burden to suck it up and make sure the loved one gets what they need in whatever time increment it takes. No rolling of the eyes allowed either.

Correction to last post

"They aren't blue, they're teal".

Colors

We do try to find a little humor in things, after all it does ease the tension somewhat. One thing that I find comical, but totally in keeping with her artistic sensibility and personality is how she tracks her medications. I'm the one that delivers the handful of pills she needs at the appropriate times throughout the day. It is a moving target as new ones get added and old ones get phased out or reduced. Right now we are phasing out ibuprofen for pain and phasing in slowly gabapentin. Or as she likes to think, phasing in the yellow ones and phasing out the bright blue ones. She gets the little blue one first thing (steroids) and then another color batch at 9am. When a new color shows up I have to explain it to her and if it shows up more frequently I have to explain why. It works perfectly well for her, while I'm looking at prescription bottles, reading labels and following Dr Kaplan's oral instructions to dispense them correctly. This way she feels somewhat in control, from an understanding perspective (even though she has to rely on me), and it is on her terms - color palettes.

"I have cancer, I'm not an invalid".

well, maybe...

It is funny how pride and vanity are such a part of the human animal. Two days ago we were walking in the grocery store parking lot and she asked for my assistance as she was feeling quite wobbly after having just taken some medications. Now normally we hold hands just about everywhere we go. Yup, in the car, on walks, wherever. It has just been a part of our relationship since day one. But when a person is wobbly, holding hands is not the most secure way to support them, nor will it do you much good if they start to tip over or stumble. So I attempted to hold her by the elbow and upper arm. This worked into and through the store, but on the way out, she complained that it made her look like an invalid and she didn't like it at all. So it was back to handholding.

Yesterday at the conclusion of her chemotherapy, she was very unsteady. We went through the same drill. I told her I was very uncomfortable just holding her hand, as she was very unsteady, so for a few seconds we were at a stand-off. "Balancing" safety and appearance. We settled on the modified handhold with our arms interlinked and my elbow underneath her, looking like BFFs out for a stroll.

It is not such an issue around the house. But I do have to support her and guide her since the chemo yesterday. Hopefully that will wear off and she will be able to navigate the house on her own. We do not leave her alone at all, except for very brief periods. For the time being, she is under strict instructions not to get out of her chair unless we are around. The fall risk is pretty high.

We do have panic alarm that is linked to our home security system that she can push for assistance. It is on the table next to the chair she sits in most of the day. I think its presence is more of a mental assurance than a practical one - if something were to happen while she is sitting and we weren't in the room (a stroke, seizure) she'd be unable to push it. Or she would confuse it for the TV remote or fireplace remote. If she becomes relatively mobile and able to walk to kitchen and bathroom on her own, and we were not around, she probably could push it if she fell. But she would have to be wearing it (it has a lanyard for this purpose) and that she absolutely refuses to do. There could be no other bigger sign shouting, "I'm an invalid" than a panic button hanging off your neck.

Chemo starts!

Ironic that the good news is she can start the poison today. Her blood counts were normal. And typically, her first statement after Kaplan said she'd start chemo today was, "oh, my hair..". Yes, she will lose her hair.

She gets the Abraxane once a week for the next three weeks, then takes one week off. Will continue until further notice.

It beats the alternative!

A Fork in the Road Day

We meet with Dr Kaplan at 9:20am. First she has her regular blood draw. Based on the results, we go in one of two directions. If her blood counts are normal she will likely start chemotherapy - maybe today or maybe tomorrow. It is the only thing she has left to try that might slow or stop the cancer - she knows it is a slim chance, but at least it is something. If her blood counts are low, it means she can't do the chemo. That means there is no chance of slowing or stopping the cancer and it is just a question of "if, not when".  That is a hard message to hear. Moreover it means that something is going on to cause those low blood counts, something not good. If blood counts are low, the explanation could be the cancer is in her liver or bone marrow. Whatever it is, it means the process is accelerating. Again, not a good message to hear. So it's likely going to be an emotional morning. We also have all the other issues to address which are not about systemic treatment - but tumor management. And of course the looming brain MRI next week.

It definitely is a mixed bag to have days like this. Uncertainty is unsettling, and getting the information allows you to understand where you are and adjust and plan accordingly, instead of speculating and dealing with a wide range of scenarios. But if the information is not good, or closes out desirable options (kind of ironic that poisoning your body with chemicals would be considered a good option) it sends you down a path you'd rather not take - and you have to deal with the negative consequences.

Met With Neurologist

He thinks it is pretty likely there is a tiny tumor (less than grain of sand or grain of rice and undetectable by an MRI at that scale) impinging on a nerve. It would be consistent with her symptoms and his exam. She is scheduled for a nerve conduction test on Monday morning. If they can find it, they could in theory radiate it. He thinks it is likely in her upper brachial plexus or in her C-6 cervical spine.

In the meantime he want to get her off ibuprofen and prescribed a new anti-seizure med that has nerve pain reduction properties.

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.

Off to Neurologist Today

Have a mid-day appointment at the neurologist to discuss her right arm/shoulder/lower neck issues. I am not sure she will have the actual EMG/nerve conduction study today. There is a process we are told, and the first step is the consult with the doctor. But it will be good to get in and get the process going. She remains relatively pain free for now in this area thanks to the work of the steroids.

But unfortunately this is a war on many fronts and there is pain in other areas. The pain in her lower back is increasing and becoming more defined. That it is still doing this despite the steroids for her arm tells me it has a different character - like maybe it is due to spinal tumors. But that is speculation for now.

What it does mean is we have a long list of things to discuss with Dr Kaplan. Her arm. Her back. The tumor in her upper left leg. Her pain medications. Her blood count and whether she will be able to do chemo or not. She remains very shaky and it's hard not to think she is still anemic and that the low blood count is due to some cancer cause.

She is pretty discouraged by the mounting list of ailments. Who wouldn't be?

Scheduling

Nothing more frustrating than trying to get an urgent need taken care of. It would be easier to check into the hospital and get the service done. I tried to get Meagan in to see a neurologist today and struck out. After trying our first neurologist - the one who is managing her anti-seizure medication but who is an epilepsy specialist and doesn't do EMG's - I was directed to a second. When they finally called back I was offered an appointment in four weeks. I thought she was mistaken or joking. Apparently not. So Kaplan took over after I let him know the issue and with direct contact got her in to a neurologist and I scheduled her for Wednesday. But pretty much spent the whole day waiting until it got set up.

So Wednesday she sees the neurologist for a consult - unknown when the EMG test will be. Thursday she sees Kaplan and gets her blood test to see if she can do chemo. In meantime her pain level is very low and well managed by the increased steroids and ibuprofen. But we need to find the cause before too long.

"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.

Third MRI - strike three

Nothing on the arm MRI. Kaplan is puzzled. I'm to set up an appointment with her neurologist for a nerve conduction study. Apparently they can analyze electrical currents in the body and see if there is a kink in a particular area, which might narrow the source down. As he said, the fact that the steroids are working indicates there is something, somewhere. So another study...

On a happier note, I was able to go to the Husky football game today with Riley and my sister and brother-in-law while Meagan's sister stayed with her. Dawgs won!

A little stability so far this morning

The combination of increased dose of steroids and ibuprofen seems to be managing the pain. Her nausea has subsided, although she was only able to take in water throughout the evening, plus a bit of a smoothie. Keeping her from dehydration is more important at this stage than calories, and as she says, she has a little extra to spare (referring to her extra padding; she retains her sense of humor despite everything). We were up just twice during the night to get her ibuprofen down the hatch. Hopefully when she is up she will be able to eat and take her meds as is typical.

No word from Kaplan yet on the MRI of the arm. I know he's on call this weekend, so expect to hear from him. I'll be researching non-narcotic pain relievers this weekend - no doubt at some future point she will need pain meds and we can't go through the nausea related issues again - it is way too stressful dealing with that and making sure she gets her critical medications (anti-seizure).

Pain, pill and nausea management.

This has not been a fun day. Meagan has been quite nauseous and unable to keep much down. This is due to the pain pills. This is particularly worrisome given she has medications she needs to keep down, such as the anti-seizure meds. So all morning I was keeping track of what went down, what came up and when, and what her pain level was. Because her pain level was low I asked Kaplan about stopping the pain meds and switching to ibuprofen, considering the steroids had done a lot of the work. We've done that, but it takes a while for those to work their way out to point of not causing queasiness.

It was getting better by 2pm, enough so for her to try a little toast. But then we had to drive to get an MRI at 3pm and that was not good. I need to write a letter of apology to the building management company about the lobby carpet....

She's getting an MRI of upper arm, another attempt to hunt down the source of the pain. After this it is get her home, (yes, I have a bucket in the car), and try to get her stable while making sure she gets critical pills down. She is shaking like a leaf and needs some water and food. The hope is the bad meds work their way out, she is less queasy, can keep water and pills down, and that the combo of steroids and ibuprofen is enough to manage pain.

I feel less than confident right at this moment. The radiation tech just came out and asked me if it was the left arm they were doing. "Nope"' I said, "it's the right". "Glad I checked"' he said, and walked back to control room.

Glad Cabana Boy is on duty.

Both scans reveal nothing

What's worse - to discover a tumor that is pinching a nerve and then be able to address it, or to have the scans come up empty? Now what do we do? We know she is still in pain or potential pain due to the issue - the steroids and pain meds are helping, but at a cost of being nauseous. Kaplan's comment, "I'm not sure where we stand". If he doesn't, I sure as heck don't know. We are going to cut her pain meds back some to see if that will help reduce the queasiness.

That was a special night's sleep...not really

Reminded me of the days with newborns - up every three hours to give her medication. Not sure who will ultimately be worse for the wear after this episode resolves - she or me.

Still waiting

Meagan is off to bed. A bit better with the meds. Kaplan just responded to an email. Nothing on the one set of MRI scans, still waiting for the other (they did two areas: her chest and the area called the brachial plexus). Will hear from him in the morning. It's hard to believe there is nothing - the pain is being caused by something. So it is a hunt for a tumor. Perhaps if nothing shows on that set of scans they will want to do a CT scan.

Waiting

We are home and now wait for Kaplan to call with results of MRI after he gets them. Meagan is feeling a bit better, pain is now tolerable thanks to increased dose of steroids, pain meds, and some anti-nausea meds (she's always been sensitive to pain meds). Every three hours she takes something. Gonna be some funky sleep nights ahead.

Frustrated and helpless

There is nothing more frustrating and upsetting than seeing your loved one in pain and not being able to do anything about it. That is to say not being able to alleviate it or take it on yourself. I did all I could to get Kaplan involved and got her in and got the prescription and administered the meds. I'll keep her on the dose schedule and record her pain levels. But if it doesn't really work, she is going to feel it and there is nothing I can do. It's sad and emotionally disturbing.

It also is a first. She's had pain before on her surgery sites, but those have been managed satisfactorily with ibuprofen. This is a new phase, with likely cancer-caused pain. In advancing cancer it is not unusual to have pain which won't go away. It has to be managed through medication. This is not a happy thought and I hope whatever is generating the pain can be dealt with. I'm not ready for this to be a new phase.

Pain reduction and cause ID plan

Meagan saw Kaplan this morning first thing. He bumped her steroid dose and gave her pain meds she takes every three hours. That should help. Have a 12:15 MRI scheduled today. After it's over, we come home and he will call us with results.

A turn for the worse

This disease presents in so many unexpected ways. She has been feeling numbness and tingling in her right arm for several weeks now. She got a neck scan three weeks ago and it turned up nothing. Yesterday it got much worse and radiated up into her neck and turned to pain. I exchanged email with Kaplan last night and we are to have her scanned today in a broader area to see what is going on. Throughout the night it got much worse, and is up into her head, although connected she says to the arm. She is in a lot of pain and discomfort and hasn't slept much. I emailed him again a while ago and we may have to go to the hospital; am waiting to hear back from him. He thinks it is likely a tumor, but the question is what can we do about it.

This is the worst she has felt physically since this whole thing started.

"What am I trying to say?"

My success at dealing with this question varies. I get it more and more often due to her mental state. Yesterday, Kaplan echoed my thoughts that her fogginess, memory issues and cognition state is really related to the brain radiation and not so much the anti-seizure meds and steroids, as those ongoing doses haven't changed in a long time and yet she has clearly has had some further impairment.

So when she asks this question I am willing to help her sort it out - but I usually need a hint or two. It's especially tough when she hasn't even started to try - because I have no idea what the topic is. It's not that she doesn't know what she wants to say, because she is quick to point out when I'm off base. It is more like when she had her stroke, she can't generate the thought but could always get the multiple choice answer correctly.

Whoops!

Chemo aborted. After she had already received the anti-nausea infusion. Kaplan actually came up to the treatment room. Her blood counts (hematocrit) are too low. Totally unexpected. So we wait until we see him next Thursday. If labs then indicate her counts are back up then on to chemo. If not, he'll want to scan her for possible cancer causes - liver involvement or bone marrow involvement. Let's hope it's just a delayed reaction to radiation.

Meagan starts a new chemo Tuesday

At 11:45am tomorrow she has an appointment at the cancer treatment center. She will be on Abraxane. The total time she is in will be a couple hours. Total IV infusion time is about 45 minutes. Expected side effects: fatigue (on top of what she is feeling from meds and radiation), hair loss, possible nausea, possible tingling fingers, likely no chemo brain.

She still has her wit and incisive mind, even if it only emerges sporadically. She asked Kaplan how likely hair loss was, and he answered, 95%. She then asked if that meant it would leave a 5% patch or just sparse hairs. He laughed, and said nope you lose it all.

Treatment Update

We meet with Kaplan at 3 today. She was scheduled to start chemo, but wants to wait until tomorrow. He's fine with that. She wants to talk about what to expect from a side effect perspective. She is feeling particularly beat up and isn't anxious at all to start. Understandable. She's still feeling quite mentally foggy, is very tired, and pretty upset about the weight gain from the steroids. This is such a long haul, with unrelenting occurrences of tumors and related debilitating treatments - and it's really getting to her. She knows there is no choice but to move forward with treatments but I can tell the difference in her mental outlook. Thank goodness she has a therapist visit this morning.

"Don't you wish you were with someone else?"

This is the most recent question in a long line of questions (do you love me, do you still love me, do you still love me as much as you used to). It reflects increasing insecurity and unease with her mental and physical state (separate from the actual cancer). I don't think it's said with an eye to the future and after she is gone. It's a fear perhaps, that I will abandon her in her hours (weeks, months) of need.

Reassurance is the only answer. And when she hears it the tears come and the relief is palpable. As a caregiver there is so much attention paid to the logistics and medical issues that it is easy to forget what is the most powerful need. So I'm stepping up the dose of the reassurance medication.

Break in blog updates

I'm going to take a week off from updates and reflections, unless something warrants it. She will be laying low with her arm in a sling for a couple days. Then we are going to our place in the San Juans for a break. We meet with Dr Kaplan next Monday and I'll post an update then.

Carvage

Another tumor excised. She came through it fine. Thanks to a little pill the bee stings of the local anesthetic weren't as bad. But still not pleasant. She's a tough cookie. Will have her arm in a sling for a couple days. Procedure took a good hour.

Resilience

Meagan's ability to bounce back from bad news is really remarkable. After a tumultuous day on Thursday, yesterday she was pretty calm and serene. She hasn't altered the current facts to suit her needs (as she has done sometimes in the past, when she would take the tiniest bit of hope and expand that to be the "base case"), rather, she is accepting where she is right now, and focusing on the present. She was able to use her computer and start arranging a few get-togethers, and that always gives her something to look forward to and a sense of accomplishment, even though it takes quite a while for her to write even a short email. We are shooting for going up to our place at Decatur Island next Thursday to Sunday, assuming everything goes well with the surgery on Monday and she is feeling up to it. She really wants to be up there  - she loves it in the Fall and it would be a good getaway before starting chemo.

After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.