Don't it go to Show Ya Never Know

One thing that this family health crisis has taught me is empathy. It may sound strange that such a personal tragic event would make me re-evaluate the way I treat other people... but it really has.

Now, I don't want to sound preachy, cheesy, or overly-emotional, but it wasn't until I tapped into the cancer community that I realized the depth to which illness affects our society. Sadly, everyone may eventually have to deal with the sort of decisions that my family is making now; I just hope for all of my friends and family that it's in the most indirect manner possible.


Of course, that's not really a new revelation. What IS novel is the understanding that so many people around me are already battling these sorts of emotions every day. I suppose it was the typical 20-something sense of invincibility that blinded me. Life seemed so bright and great!

Finishing my last college paper and feeling on top of the world

Any tragedies I had witnessed in the past had not quite permeated my understanding; I had not considered how people live through that kind of experience.  As silly as this statement might be, I'm going to say it:  People don't deal with grief and deal with life separately; it's all integrated together. Sad people don't flee to an isolation chamber before standing behind you in line at the supermarket or talking to you on the phone. Part of being a member of the human race is interacting with people who could really benefit from patience and understanding.


The funny thing is that a lot of the people I know who are stressed about illness are silent about it. My students who are the most care-free are the ones who harass me about homework, grades, and my "unfair expectations." Quiet students will later mention that their father is in the hospital or their mother needs their help keeping their family business open. Some of them will never mention it at all. Now I keep that in mind when I write my policies for attendance and late papers (while still maintaining a vision of college as a place where adult responsibilities must be practiced)

Of course, none of this applies to plagiarism

It is my opinion that a sense of empathy and humanity can be helpful in all parts of life. I've found myself being more patient when I see someone feeling exasperated at the airport or racing across the pedestrian crossing milliseconds before the light turns. Who knows what they're dealing with? ALSO, how much more do I gain by forgiving their behavior and letting it go? I've got my own baggage to process.


I actually hope that every time I'm patient as someone shares their unhappy story of the day or irritates me without thinking that they'll understand when I need some introverted time to recollect my energy. Maybe when I accidentally brush them off when I'm deep in thought, they'll accept my apology later.  At a bare minimum, accepting the fact that we're all human has got to make this a better place.

What's a Half Match?

So we got some tremendous news yesterday! My mom is approved to have a half-match (haplo-identical) transplant at John's Hopkins this Winter. I got a TON of support and excitement in reaction to that news, which was incredible, but a lot of people had questions about what was going on.

I'll do my best as a non-scientist to explain what's going on. This info is in my brain from reading every page on BetheMatch.org multiple times.

What is a Bone Marrow Transplant (BMT)

A bone marrow transplant is a procedure used to treat people with blood cancers. Bone marrow is responsible for growing and creating blood cells, so it's generally a trouble spot for people with Leukemia or Lymphoma. Even people with other blood or immune system diseases like sickle cell can be treated with a bone marrow transplant.

There are lots of different types of BMTs (our will be a bit peculiar) but the general idea is that the patient destroys their own immune systems with lots of chemo and puts another one in its place.

So, let's get this straight. That's an amazing medical feat!! It's also one of the more dangerous medical procedures that you can chose to go through.

Why a Bone Marrow Transplant?

My mom has been told that she needs a bone marrow transplant to prevent the chance of a relapse. Her cancer cropped up in the Central Nervous System, so it was treated with one of the most intense chemo protocols available. Because she's a huge over-achiever she came out of that regimen in complete remission.

However, the oncologists have already thrown everything they've got at the disease; we were told that a relapse would be "very very bad" <- actual doctor quote.

A BMT transplant will help in two ways

1) Rebooting my mom's immune system after it's been destroyed by chemo and cancer

2) Using the new immune system to detect those pesky cancer cells and kill them

What is it like? How does it work?

It took me a while to figure out what going through a BMT was actually like. Here's the basic schedule

Days -20 to 0: The patient spends about 2 weeks in the hospital in isolation. Chemo will destroy her immune system until it dwindles down to nothing. There is a risk for infection during this time (duh)

Day 0-30: The "transplant" itself is pretty easy. The bone marrow and stem cells are delivered through an IV. For the next 30 days, my mom will be in the hospital while the new marrow engrafts. If it doesn't, she has two children with an almost endless supply willing to give her more. We have to watch out for other major complications like graft vs. host disease.

Day 30 - 100: Once the marrow engrafts, my mom can move out of the hospital into an apartment that is a max of 30 minutes from the hospital, there we'll get to hang out until the major danger period is past.

Graft Vs Host?

Graft vs. host is what is sounds like; the new and old marrow battle and attack each other. Cancer patients actually want a little bit of this because the new marrow will battle any lurking lymphoma.

How does that actually appear?

In lots of ways:

Gastro-intestinal problems

Itchy or flaky skin that changes colors

Fevers

Just feeling really sick

Graft vs Host can be a temporary problem or it can last for a number of years. Doctors try to balance these symptoms with a ton of steroids that can cause problems of their own, but there are solutions. 

Unfortunately graft vs. host can be fatal and accounts for a large percentage of the mortalities from the procedure. 

Half- Match?

So, my mom did not find a donor on the Be The Match Registry (Order a swab kit today!!). 

Instead, she'll be using marrow that is a "half- match" from either my brother or myself.  This is actually a very important procedure to develop since many people have genetic backgrounds that make it difficult to find a match on the registry; I'm comforted knowing that we are contributing to such an important body of knowledge.

Plus, she'll become a CLONE of one of her children

And who wouldn't want to be a clone of people so awesome?

Yes, using a half-match is a more risky than using a perfect match from an unrelated donor... but...

That Brings Me to the Good News

Yesterday we found out that my mom is going to get treated by the half-match specialists at Johns Hopkins. We're really privileged to be able to talk with these very talented professionals. The odds are still scary (I'm not happy with any mortality rate over 0%), but we'll be in very good hands.

Onwards and upwards.

Working it Without the Wig

Let me expound upon ideas (expressed in other venues) about my motto for this Fall Quarter:

"I may be caught without my wig, but I'm working it"  

This brilliant phrase comes from my English professor explaining the infamous Earl of Essex/ Elizabeth I debacle.  

We're all familiar with Good Queen Bess: the Virgin Queen, namesake of my home state of Virginia, and all-around kick-ass female monarch

She's not someone you want to mess with

Well, in the later years of her reign she included the young Earl of Essex into her circle of favorites. Yes, he was decades younger than her AND the stepson of her late favorite/ lover(?) / advisor Robert Dudley, but we're not going to pass judgment; that's what romance novels are for.

ANYWAY the young Essex was making some seriously poor decisions by challenging her left and right so she sent him to Ireland to deal with the rebellion there. He mostly loitered around, signed a truce with the Irish rebel without her consent, and then rode back to England where he stormed into Elizabeth's private chamber. According to legend, she was still in a nightgown without her glamorous wig.

Again, bad life choices

This is a woman who was accused of being vain and clinging to her pearls and ruffs. Then a man, who having threatened her before, appears in her bedchamber with a sword when she is at her most vulnerable.

Did she freak out?

Did she assume she was any less powerful without the trappings of royalty? 

Did she give in to the crazy rantings of a young egomaniac? 

No. Her Royal Majesty WORKED. IT. OUT.

and calmly listened to Essex in order to defuse the situation

(oh and later the Earl was executed for the teeeny tiny crime of leading an unsuccessful revolt)

I find this story particularly relevant to all of my loved ones dealing with cancer. In some ways, we've all been caught "unprepared" for this fight. No one can predict when this thunderbolt will come from the sky and, of course, it leaves many people quite literally deprived of their identity that comes in the form of hair.

As a caregiver, I am fortunate enough that nothing about my physical appearance would tell anyone that I'm coping with stress every day. But I feel that my metaphorical wig has been stripped off in my own fights against upstart rebels; mine take the guise of syllabus planning, endless emails from students, paper-writing, grading, grading, and oh... did I mention grading. Certainly, my capacity to deal with these minor obstacles has eroded over the last 10 months.

STILL!  I will not relent. I am taking an example from that tudor queen and keeping calm and composed. Even further, it's my personal goal to enjoy all of the incredible, happy memories I make every day.

Today, I am issuing a challenge to those people who have been feeling winter's darkness drag them into a mopey sullenness. Listen up everyone who has been tempted to explain grumpiness or impoliteness with the easy line: "I'm having a bad month!" I'm unifying the wigless and the wigged out!

Gather yourself together and work. it. out. 

No excuses. 

Together, we can rid the world any Earls of Essex who try to stop us. 

We're way more fabulous than they are anyway.

.Really? That facial hair?
 Another poor choice Robin!

P.S. I tried to think of a photo that represents my most literal "wigless" moment. It might have to the morning I woke up after a night of camping on the Great Wall of China. I had only grabbed a couple of hours of sleep (because mosquitos are loud) and I will admit that my companions had less-than-affectionately named our bathroom facilities "the buck" <-- short for the bucket. 

I was sweaty, achey, and having a very very bad hair day:

Can't imagine being much happier

Off the cuff observation...

It's hard to explain to anyone why something is upsetting, disappointing, or even game-changing when it's medical in natural.  You have to go into details about molecular biology and sometimes hospital bureaucracy in order to convey the connotations behind news.

After that long process, sometimes the sympathy that follows feels like its been wrung out by manipulated overtures. You want to yell: NO!  I *deserve* to be upset. Behind all these words, there are genuinely upsetting ideas.

...

But on the positive side of things, I know now a lot of really nifty things about science. In all seriousness, that really is a hopeful part of this whole mess.

4 Ways to a Happier and Healthier New You!!! (For patients, caregivers, and supporters alike)

This morning I picked up one of those glossy healthy living magazines and thumbed through the pages.  I came across a guide (very common in this type of publication) that claimed to make absolutely anyone happier and more content with their lives.

"Really?" I thought.  "Could this apply to someone dealing with cancer? I could use some extra doses of happiness right now. Since these magazines are often found in oncology waiting rooms, they must have at least some wisdom"

Turns out, no.  The hints were mostly things like:

1) Try a new juice for breakfast!!
2) Switch from red meat to fish!!
3) Stop daydreaming about those negative thoughts.  They're not important right now!!

Sorry big wigs at Oprah magazine and Simple Living, I feel like my negative thoughts can't be dismissed so simply.  Here's my own list that's helped make me happier in the past 10 months of dealing with my mother's chronic illness.

List for Young-Adults/ Caregivers

1) Talk about what is troubling to you

Pushing things deep down until they no longer bother you is a tempting strategy. It seems so simple and so very awesome. Turns out that it doesn't work. I've actually found that it makes me bizarrely bitter when I try to fake my way through a daily routine with a slapped-on-smile and shaky sunny attitude.

Find someone you trust and try to mention the fact that you're having a rough day. Admitting it to yourself or another person really relieves the burden. We're all human!  We all get upset about everything from flat tires to frightening test results. It's okay to appeal to the universal emotions of stress and 'fess up.

2)  Prioritize your to-do lists.

When my mother was first diagnosed, I was working two jobs, grading 50 quizzes a week, and taking 18 credits of seminars and language classes. At first I had some strange determination to be "strong"and work through the pain to become some sort of superhuman graduate student. There was some weird fantasy running through my head where I envisioned myself getting my Ph.D. diploma while a crowd of admirers whispered "WOW!  She did all that WHILE helping her mom with cancer. The whole time I didn't even know..."

Turns out, that was a short lived fit of madness. I quickly identified the tasks that *needed* to get accomplished and explained to my professors that I would have to back out of some of my more optional responsibilities. This quarter I've also restrained myself from committing myself to my usual (insane) task load. I've imagined myself as taking an extra 4-unit seminar called "Emotional Well-being" where I spend time relaxing and preserving my mental health. It's been stupendous.

Life lesson:
You can learn classical Chinese *after* your mom beats cancer

3) Try to get up and get some exercise and do some cooking, but not to the extent that you feel guilty or overwhelmed.

In a similar way, try to take over-achieving out of the choice of what activities would make you healthy and happy.

I think our culture has an image of twenty-somethings as invested in a very specific, self-improvement lifestyle. Top Chef has taught us not be content unless our recipes involve at least 20 ingredients. Every women's health magazine preaches exercise as some sort of transcendent and moral choice.

In times of grief and worry, I've been thinking about these activities as things that make me happy, not as some obligation to be perfect. When I go out for a run, I do it for the endorphins, not for a vision of a "balanced work-out." When I cook lentils, I do it because I crave warm and comfy food, not because I've heard it's some sort of super food. Do the best you can and try not to feel guilty if you'd rather have a good cry or eat chocolate. Those are pretty fantastic ways to cope as well.

4) Try to help in a concrete way.

Because it looks like my mom might not have a match, I've tried to get out the word about the Be the Match national registry. This isn't because I have any illusion that my Facebook friends will magically be able to cure her. I do it because I like the pro-active feeling of knowing that I can prevent another family from dealing with the same decisions.

List for people trying to keep up a relationship with someone dealing with chronic illness/ stress

1) Let your friend talk about what is troubling with them

When I was comforting friends who were dealing with trauma in the past, I always thought that getting them past talking about their hurt was some sort of victory. It felt like I was cheering them up. I then have a very clear memory of my mother talking about the death of her father. She said that the last thing she wanted was for people to forget him, so in the midst of her grief the thing that made her feel better was processing memories of his life and even details of his death.

That conversation really altered the way I thought about comfort, grief, and death

My grandfather: Herb Carter

When I bring up a story from my stay with my mother at the hospital or mention new research about lymphoma, I've realized that I'm not reflecting on sadness; I am sharing the things that give me strength in the hope that my friends will increase those emotions by participating in the memory.

SO when I think something, I share it (when it's still socially appropriate). Don't feel the need to avoid the monster in the room or "fix" the grief. Sometimes it's okay to be sad and your friend may be trying to reach out and be close to you instead of pleading to help.

2) Talk to your friend about absolutely anything.  

It's sweet to say "call me anytime" and the thought definitely comes across.  However, in reality, people dealing with great amounts of stress are not going to reach for the phone when they're feeling low and putting the responsibility on them is not going to foster the relationship. Try to give them a ring to tell them you're thinking of them or send them a silly email about a memory you have of the past. Heck, you can even text them out of the blue to tell a stupid joke.

Happiest moment of my MONTH:
Abigail shared an inside joke with me and sent me Halloweentown

3) Don't feel bad about gushing about a new relationship or job

Really, in my experience, hearing happy news from friends is one of the highlights of my day. I don't feel jealousy. I feel just as thrilled as I always did.  Dealing with cancer has not changed me in a fundamental way, I am just as much of a gossip as I always have been and love to be treated as the good-ole-Megan that I was before my mom was diagnosed.

4)  Just communicate

Cancer is awkward. I'm sure your friend is aware of this too. No one know what to say and, as I mentioned, sometimes it's not possible to "fix" the situation. You can be honest and tell your friend that you're not sure how to respond to her news.  If you're still invested in the relationship, just reach out and literally say anything.

The worst thing in the world for someone dealing with grief is not hearing your friend say the wrong thing. It's hearing them say nothing at all.