Monday, October 31, 2011
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.
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...
Sunday, October 30, 2011
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.
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.
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.
Saturday, October 29, 2011
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).
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...
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.
Friday, October 28, 2011
Thursday, October 27, 2011
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.
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.
Wednesday, October 26, 2011
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.
Tuesday, October 25, 2011
Monday, October 24, 2011
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.
Saturday, October 22, 2011
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.
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.
Friday, October 21, 2011
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.
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.
Thursday, October 20, 2011
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!
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.
Wednesday, October 19, 2011
In the meantime he want to get her off ibuprofen and prescribed a new anti-seizure med that has nerve pain reduction properties.
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:
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.
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?
Monday, October 17, 2011
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.
Sunday, October 16, 2011
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.
Saturday, October 15, 2011
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!
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).
Friday, October 14, 2011
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.
Thursday, October 13, 2011
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.
This is the worst she has felt physically since this whole thing started.
Tuesday, October 11, 2011
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.
Monday, October 10, 2011
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.
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.
Monday, October 3, 2011
Saturday, October 1, 2011
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.