well, shit.

Literally. Now comes the long-awaited journey of incontinence. It was bound to happen sooner or later, though I had hoped we would have hospice or some home health help before that point.

I haven't written here in a little while--things have been busy.

Mom is increasingly weak and constantly fatigued. She spends all day in bed--and I mean all day. Last night was her last dose of chemo this round and I'm hoping that we can get hospice in now as they can't be called in if the patient is still on any aggressive curative treatment [added to the Practical Tips post here!]. She is understandably on the fence about hospice. In her mind it is synonymous with death, as it is for most Americans. What I've learned, though, is that every single person who writes or talks about hospice says the same thing: "I wish we'd done it sooner." Hospice is a part of the journey, not it's end! There is still life after stopping treatment, and the patient might even feel better without so many drugs in the system. No chemo brain!

Throughout this whole thing I've kept strange hours; sleeping in late because she does, staying up late because the wee hours are the most peaceful here. Now I'm followed by the constant hum of a baby monitor. Hum isn't the right word, though. The default static that comes through is low and constant, a little scratchy, like holding a conch shell to your ear. There should be a word for just that sound. Because of her weakness, and her weak voice (did you know that is a side effect of Avastin?), I picked up a baby monitor set at Habitat for Humanity ($5!). I leave it on my nightstand at night to charge, and take it around the house with me during the day. Just like a mom. (On an unrelated note, here is a very interesting short essay on not having kids). I'll be adding the baby monitor to that list of Practical Tips, too.

Good things.......well, my godmother/mom's best friend visited again. We absolutely love having her here. She's full of energy and has a beautiful healthy laugh. She was determined to get me started on some projects in the kitchen (my defense/coping mechanism is home improvement) and she succeeded. Twelve years of avocado green plaid wallpaper (with matching drapes), and now it is all painted a fresh, clean beige. I've removed the soffit from over the sink to add some height and am currently in the messy "slather it with joint compound and sand it all away the next day" phase. Up next: paint the cabinets or install the new flooring. Can't decide where to start.

Another good thing: sold mom's car! It has been sitting there for a year. Excellent car, clean, low mileage, just sitting there depreciating. A friend of a friend's grandson is turning 16. Happy birthday! And thank you! We really needed that money.

Possible good thing: somehow I survived healthcare.gov. I needed to lower mom's premium (I discussed earlier how it would have doubled next year) as well as get my own health insurance. I went through the process on the phone with a very nice young man who, at the end, said I wasn't eligible for tax credits or cost-sharing. Um, what? I'm unemployed, dependent on my permanently disabled mother whose only income is SSDI...aren't we the poster children for the Affordable Care Act? So I went online and did it myself and, lo and behold, the two of us will be getting excellent coverage for $70 a month...that includes both of us....$70....Obamacare, how do I love thee? Let me count the ways...and let me pray there are no red tape hiccups or hidden fees.

My dad visited. It is an innocuous statement for anyone who doesn't know my family. Long story short: my grandparents basically disowned him when he left my mom. Mom and I moved in with them (her in-laws). They became the closest family we've got. Lots of tension, lots of water under that bridge. He wanted to see mom, to apologize, and to see his parents. I never thought I'd see the day when we all sat down for dinner together. It was truly surreal. Damn does life change fast.

It's now been almost 14 months since mom's craniotomy. Her cognitive abilities continue to decline in the sense that she seems to process things extremely slowly, or not at all. She is terribly weak and often needs help sitting up, getting out of bed, and definitely getting in and out of the tub. Increasingly incontinent, as noted above. She still has moments of emotional clarity when she experiences intense sadness, but I think these fade quickly, thankfully. With the discovery in the ER of new emboli, she has been taken off Avastin (which can increase chance of clotting) and Lovanox (which apparently wasn't working). She is now on Pradaxa, a different blood thinner that, of course, does not have a generic. We have another MRI in about a week, and meet to see the results on Christmas Eve.



Image: I read Marvell's "To His Coy Mistress" again the other day, first time in years, and I still love that line "But at my back I always hear/Time's winged chariot hurrying near." The image is from Dali's Divine Comedy series, Purgatory Canto 26. I feel that they work together.

life in the ship is beautiful

Today mom thought she was on a ship, her bedroom one of many staterooms. I opened the blinds (which she always keep shut) and showed her our front lawn. That settled that. But it seemed a delusion a propos my previous post and I wanted to share.

It reminds me also of a quote from Iron Island (Jazireh ahani), directed by Mohammed Rasoulof. An abandoned oil tanker in the Persian Gulf becomes a home to many poor families. It is slowly sinking. The "teacher" to the many children on the boat has them repeat the following each day. I paraphrase:

"The sea is vast and spectacular.
The ship sinks more in the sea each day.
Life in the ship is beautiful."

I think it's a lovely credo.



Image: Gentile da Fabriano's "St. Nicholas Saving a Ship from the Tempest," c. 1425, link, from the predella of the Quaratesi Polyptych.

such stuff as dreams

Earlier this evening my mom came into my room crying. She's been extremely emotional lately, crying often, and she was concerned tonight about me. She worries about what will happen to me when she's gone, and I would imagine she worries about those last moments--where she'll be, if I'll be there, if she'll be in pain, etc.

"I'd like to be sitting with you, drinking a glass of wine," she said. She hates wine, but I know the sentiment. She wants to meet death on her terms and that is a situation that very few of us are ever afforded. And so I briefly began to look at, for lack of a more pleasant yet concise term, euthanasia. Needless to say that didn't last very long. I like the idea of us both sitting down, saying "enough," and enjoying each others' company as it ends. But she's stubborn and I can't imagine her ever reaching a point where she has had enough. Were she in pain, yes, she would ask for relief, but I don't think she would consider that as accepting death.

It has taken her over a year to come to terms emotionally with her prognosis. She still has moments when she thinks she can "beat" it, but for the most part she acknowledges that this will kill her. It's a sudden wave for her. For me it has been a sea change, the slow ebb of the woman who was my mother.  I've had over a year to grieve, slowly, and in my own (surely unhealthy) way.


After writing the above I decided to look up the origin of the term "sea change." Wikipedia and Shakespeare...what would life be without them?

"Full fathom five thy father lies,
Of his bones are coral made,
Those are pearls that were his eyes,
Nothing of him that doth fade,
But doth suffer a sea-change,
Into something rich and strange,
Sea-nymphs hourly ring his knell,
Ding-dong.
Hark! Now I hear them, ding-dong, bell."

-From The Tempest Act 1 Scene 2, here. The brief wiki article is here.

Appropriate I think.


Image: John William Waterhouse's "Miranda," 1875.

countdown to the countdown

We finally began our new chemo treatment, after two weeks of sorting out where we could get the prescription filled for our usual $10 co-pay, rather than the laughable $800 we were quoted. Her new drug is Etoposide, also called VP-16, and thankfully it comes in pill form. 14 days on, 14 days off. Her confusion has grown, however. Maybe that's not right. It would be more accurate to say that it is more persistent. Fewer moments of lucidity, less understanding when I try to set things straight. I promised her at the beginning I would never lie to her and play along with her delusions, but I've caught myself doing it once or twice in the last month. I'm not sure if there is any way to judge whether that is right or wrong.

She's also more emotional. She thinks about her death fairly often and worries what will happen to me. Before, I was frustrated that she didn't seem to grasp her prognosis. Now I wish she was still in that place of blissful ignorance. In two weeks she has another MRI, at which time I will finally corner our neuro-oncologist and get a straight answer about a timeframe. I know she's going downhill. I just need to know how much time we have.

And the hits keep on coming. Today we got our letter from Blue Cross Blue Shield NC describing our ACA-compliant plan for next year. Her premium and office copays nearly double and her deductible has gone up by $1500. No problem! We just will have to cut...well....oh wait. There's nothing to cut. We already live beyond our means despite pinching every penny. I suppose that if we stop eating we can afford her insurance. We're eligible for a subsidy it seems, but applying involves the new ACA website, and it has been having issues, to put it lightly.


Oh, and the government shut down. Grow up.


I've always loved this Dali painting. It's sad and inspiring, ridiculous and sincere. It seemed appropriate.



Image: Salvador Dali's "The Elephants," 1948, link.

practical tips for the brain cancer caregiver

People often use the term "battling cancer." Going to war means raising an army, and there are tons of people out there whose sole purpose is to support you. Start building your army/team/whatever from the beginning. Below I've started breaking down the areas of greatest need. I've put down examples of resources and things/people I've found important or useful. This is by no means comprehensive, but it's a start for those of you who, like me, were thrown into a very complicated situation with no warning or experience. I hope to update this as time goes by, adding what I've experienced and learned.

• Legal
• Will, living will, power of attorney, estate planning. Get all this out of the way early while you're still motivated by whatever sicko neurotransmitter creates energy from shock and tragedy.
• Recruit: most county bar associations should have some sort of referral service to put you in touch with an attorney who specializes in your needs and won't charge you an arm and a leg. For example, I just found an elder law attorney in our area through such a referral program who will charge no more than $50 for an initial consultation. Write down a list of questions and make the most of that half hour (or however long). There might also be resources through local law schools, or reduced/pro bono clinics.

• Medical
• Medications
• Avastin: can give the patient a squeaky and/or weak voice.
• Be prepared for change. A drug might work great for a while (for us, it was Temodar). After a stint in the hospital we restarted it--lo and behold, mom is allergic to it! The steroids she had been taking masked her reaction. Know that there are many options and that you will, almost certainly, try several.
• Hospice
• Don't put it off. Call them in when you first need them. You're not stuck with them! If your patient jumps out of bed one day, fit as a fiddle, you can send them packing. 
• The patient can't be pursuing aggressive/curative treatment if they choose to go into hospice care.
• If you aren't ready to stop treatment, a lot of nurses/hospice workers "moonlight" in home health. Ask around. A friend of a friend has a registered nurse who works with hospice come out to her aunt's house regularly for only $15/hour! 
• Recruit: your team's social worker. They will know just the person for you to talk to at the local hospice agencies. 

• Financial
• Insurance 
• Keep up with premium payments (don't let the bills disappear into stacks of papers)
• Recruit: insurance providers sometimes offer complimentary services such as a case manager. We've been offered one but haven't yet followed through. I'm not sure what he/she does, but the more the merrier!
• Hospital
• Whatever treatment isn't covered by insurance does not necessarily need to be paid off right away. Get in touch with customer service and set up a payment plan. Sending out ten $25 checks a month to different providers might seem tedious, but you're basically just paying off an interest-free loan. Save the big chunks of money for other things.
• Patient-assistance programs. Chemotherapies and other medications are freakin' expensive. If your insurance doesn't cover the full cost (or any cost), many drug companies offer patient-assistance programs. Example: my mom's Temodar was shipped to our house monthly and we didn't pay a penny. 
• If your assets are low enough, you may qualify for charity programs through your hospital.
• There might be limited grants available through the hospital. For example, one month our social worker applied to a grant for us that covered one month's mortgage payment. I never, ever, would have thought to look for something like that. 
• Recruit: social workers. The brain tumor clinic at our hospital has amazing social workers who know the ins and outs of all of this stuff. They walk on water and surely don't get paid enough. 
• Recruit: In our clinic there is also a patient assistance liaison who handles the aforementioned financial relief programs.
• Assets
• Cancel the patient's car insurance if they are unable to drive, and consider selling the car. In our case, my mom will never go back to work and her doctors have told her she can't drive. It took me six months to realize I should cancel the insurance. Now the car is sitting there, depreciating in value with each day.  
• If you have money sprinkled all over the place, now is the time to get it in order. Everyone's situation is going to be very different, but here are some general points I've learned:
• If you are legally disabled you are exempt from the 10% additional tax applied to early withdrawals from retirement accounts. 
• If you're thinking of moving money around or selling property, be aware of capital gains taxes. If your income is low enough (example: we are in the 15% tax bracket currently) you will be exempt. 
• There are all sorts of strange breaks/benefits for a person on disability. For example, a free lifetime pass to our national parks (who would've thought?!). Also, in our county we can get a break on property taxes up to 50%. Do research for your state and county. Be persistent. 
• Recruit: if you already have a financial advisor, awesome. If you don't, the decision to approach one depends entirely on you and your level of comfort with managing your finances. 
• Recruit: There are tons of excellent online resources, not the least of which is the "Bogleheads" forum and wiki. It's basically a group of smart people who geek out over financial stuff, particularly investment planning. They critique one anothers' portfolios and are kind enough to answer questions from dummies like me. 
• Social Security
• Apply for Disability Insurance as soon as possible. With brain cancer it is pretty much guaranteed and they can sort of "fast-track" you through the system. You want to start early because, though SSDI means you are automatically eligible for Medicare, there is a 24-month waiting period before those benefits can take effect!

• Personal
• Prepare yourself mentally and emotionally for long periods of waiting. You will wait for everything. Appointments, medicine, results, answers, relief, help, calls...everything.
• Create a healthy routine from the start. Things are crazy and hectic in the beginning, and if you don't start off with healthy living in mind, it will be near impossible to implement later. Get outside each day. Plan your meals. Give yourself a break from caregiving. I've fallen into a routine of only leaving the house for appointments and grocery shopping--that's not living.
• Get accustomed to the "new normal." That goes for both caregiver and patient. Things will never be the same as they were before your diagnosis, so don't set expectations that you will surely fall short of!
• Make lists. Things to do. Things that make you happy. Ways to relieve stress.
• Recruit: friends and family, obviously. Personally I have a hard time asking for help--that is, I don't even realize I need help until it's too late and I'm overwhelmed. Be open and honest with your friends and fam from the beginning. Tell them the situation and gauge how willing they'll be to step in and help out, even if it's just coming over and chatting for a while. Some people handle this sort of stuff better than others. One of my mom's friends, for example, doesn't handle illness and the thought of mortality well--she sort of spaces out. You can't force people to be there for you, but you can set appropriate expectations for yourself from the beginning. 
• Recruit: Seek out a psychiatrist. This goes for both the patient and the caregiver. If you've never been to a therapist before, you'd be surprised just how helpful it is to simply talk for an hour. You can lay out the whole situation to a stranger and not worry about putting things delicately or biting your tongue about things that might otherwise make you feel guilty. 
• Recruit: Your hospital or clinic will have information on support groups. Go to them! Our hospital has a dozen different groups. There is one specifically for brain tumor patients and their caregivers, which we have yet to visit. There is also one for caregivers only. I went to that once and it was wonderful. 

• Random
• Receiving unemployment: teaching assistantships (such as what I had during graduate school) do not count as eligible wages regarding such matters as unemployment benefits. BUT, if you had to leave your "real" job to care for a disabled family member, as noted in a previous post, you'll be eligible. It's an exception to disqualification that isn't usually mentioned on general descriptions of your state's unemployment policies, so take a look at the actual statutes. Legalese is dull, but you can find gems!
• Buy a baby monitor set! Even if you don't need it yet, if you spot a good deal, grab it. I got mine at the local Habitat for Humanity ReStore for $5. If mom is too weak to get out of bed or needs something, I can hear her from anywhere in the house if I carry the receiver with me. Worth it's weight in gold.
• On a similar note, consider buying something like this "remote wireless key finder." I bought this for a few bucks (price has increased, apparently) months ago in order to keep track of mom's cell phone. She would wander around with it, lose it, and calling to find it was no help because it was on silent. I bought a case with a ring for attachments and put this receiver keychain on it. Hit the button on the transmitter keychain and it starts beeping. These days, mom can't even turn on the phone, so I'm repurposing these. The transmitter will go on a lanyard around her neck, and I'll have the receiver by my bed. If she calls through the monitor while I'm asleep I rarely hear her. Or, like today, I found her on the floor of her bathroom. It's like that Life Alert "Help I've Fallen And I Can't Get Up!" but way cheaper. 

Last updated 12/18/2013

Image: Jacques-Louis David's "Napoleon Crossing the Alps," 1801, link.