Unravel Cancer: Experiences with family battling cancer

06 January 2011

13:11 When love can be too much

Maybe I've had this grief thing all wrong.

Maybe the Daughter of Cancer blogger had it right all along. All her crying, whining, wallowing, and carrying-on; maybe that's it. Maybe that's how to deal with grief.

The alternative seems to be killing me, or at least that's how it feels today.

While waiting at the bus stop Thursday on my way to work, my neck & left shoulder spasmed severely, to the point where I felt my head jerk.

Immediately I called my acupuncture lady, and met her at her office as she was coming in for the day. She stuck me full of holes, cupped my upper back & shoulders to the point where it looked like I'd been beaten, and told me to stay home.

Gol dang it.

Seeing my brother over the holidays clearly had an impact. Seeing him always does. It's the same with my mom. This whole situation feels like an addiction. Literally, I can't control my body's reactions after returning from a visit. My mind seems to be ok, but my body is not following along with my mind. No matter how I try to accept the horror unfolding before me, no matter how hard I try to let them both go, my body says Eff You.

When can love be too much? When can love hurt?

In this case, it's me who's getting hurt. There are many great things I have going for me, like the trip I'm planning. Just Saturday at the Sierra Club snowcamping orientation, I met a great adventure videographer lady who's trying to get her career started. Woohoo! Even if we don't end up working together, it's an in, a lead.

But, when I return from a visit, my body goes kaflooie, my mind gets way-layed in depression, and I take everything personally. This is not a good recipe for trip-planning. Already I'm way behind on what I need to deliver to the web design consultant. Hopefully I can pull it out of my butt tomorrow night after work.

The fact is, all this crap has been going on for almost 2 years now. My symptoms are getting worse & worse. The spasm this week was so scary, what with numb pinky fingers & all, that I decided to seek medical help from Western doctors. My current GP blew me off. I have the name of another lady my pal recommended. My yoga teacher & I agreed I should get a full-on physical, with ob-gyn, and hopefully a spinal x-ray, etc. of some areas. He thinks we should eliminate any major issues (like tumors) and then go from there, if it's simply a matter of stress reduction.

Yes, I wrote tumors. The physical reaction my body had this week just seemed so extreme, that I'm now terrified some other major thing is wrong. Maybe it's my heart, which is why the contracting muscles are all on the left side. Maybe it's my thyroid (runs in the family). Maybe it's a low-grade infection (lymph nodes are hurting). Maybe it's skin cancer (bumps on my neck for 5 weeks).

As you can see, dear readers, I'm coming apart at the seams. That's exactly how I feel. The stress of hearing about my mom's emergency surgery on Christmas Eve (3rd tumor), and not being able to be there, was a lot. Add that on top of my brother's ridiculous condition in the wheelchair, and that's triple a lot.

So, I pray & ask for the answer to balance how much I care, how much I love them, the survivor guilt I have, and the rest of Life, including my super stressful job, and generally active lifestyle. Clearly, these ingredients are making a sour stew. They are not balanced and it's causing some severe physical reactions that are uncomfortable & scary. Truly Thursday & Friday were deeply scary days. Now I know a little bit what it must have been like for my mom & brother to visit the doctor's after their diagnoses, and wonder if the treatments really worked. Terrifying.

Today, I managed to cry a bit. It was really helpful, but my body still seems sore, and overall I feel exhausted. Grieving is hard work. It's uncomfortable. It makes me feel vulnerable. I don't like it. Apparently, that's a big part of the problem.

So, we'll see. All I can do is take steps to learn more about what's going on. Knowledge is power. And, I'm thankful that amongst all the unconscious redirection of stress to my body, a part of me _did_ wake up & realize it was too much.

Meanwhile, I bought some snowcamping gear this weekend @ REI and Yakima, and a little somethin' somethin' from Vickie's Secret. I'm feeling better.

AND, I listed to most of the Islanders vs Blackhawks game, where the Hawks spanked the Isles, 5-0. That felt great! It was so awesome, I share it with you here:

Even though my body is cracking, there's something worth celebrating: Go Blackhawks!

Labels: brain tumor, Chicago Blackhawks, family cancer, spine injury, stress, yoga

Breathe.

23:08 Stanley Cup for Cancer: Family Update

It's been quite a week. My brother went in for a shunt to drain his excess spinal fluid into his stomach. Word from his wife is all went well, he's awake out of pain (mostly), and itching to go home. The little one ran the last TD in for his team this afternoon, even though they didn't make the playoffs. The oldest won his game & is headed for playoff-ville. Life continues on & all are doing well given the situation.

Two weeks ago marked my 10-day visit to Denver and the whole crew. We had a really great time. It was a shock to see my brother's mobility so compromised. There were several occasions where he fell & I had to pick him up. Thankfully, I was strong enough.

But, all in all spirits were high. Mickey cracked jokes & complained about politics in his usual manner. He really enjoyed any & all time spent with the kids. He pushed himself quite hard to get up & help take them to school. He can't drive anymore, so he would be a passenger while I drove.

The end of the week was topped off by a hockey game. It was the season opener for the Colorado Avalanche, and the beat the Chicago Blackhawks. Mickey & I were in Blackhawks regalia, and the kids cheers for the Aves. They also had the 1998 Avalanche Stanley Cup winning team come on the ice for a reunion ceremony. It was really cool! The lady next to us said it was the first time they had a sellout crowd in a long time though. That's a shame.

What made it so much fun was we played dress up:

The kids especially enjoyed this. The oldest is in 6th grade and already trying to be "cool". So, it was a chance for them both to be just kids & be silly.

It seemed the struggle was mostly on me this week. My emotions fell into a low spot once I began to fight off a cold on the weekend. I didn't take good care of myself & got worse & worse. Several acupuncture visits and herbs seemed to not make a dent. Finally, my back went out Friday night, as I was trying to put air in one of my car tires.

Needless to say, I was pissed. It's one thing if I was climbing, or doing yoga or whatever - but filling air in my tires?! And, all week was spent in bed because I was so sick. I wasn't kicking up my heels around town every night.

It's really a mirror for my frustration. Since leaving Denver, it just seems like my brother has gotten worse & worse. My fear is he's on the "slippery slope" to the end. Maybe now with this shunt procedure, he'll feel better, gain some mobility and energy back. Somehow, though, things feel ominous to me. I just can't seem to shake it.

This feeling lead to survival guilt, in full force. The survivor guilt hasn't come around in a long time, but it sure did this week. I began to feel somehow responsible, or was getting hard on myself for not fixing the situation.

But, what I can focus on is I showed up the best way I could that week. Despite a rental car setback (Note to self: you can't rent a car on an expired license), I truly did the best I could, and the whole family appreciated it. I helped Mickey with many chores & errands that have now become very time consuming because he can't use his arms & legs well anymore. I helped take the kids to school, fill prescriptions, wash windows, do laundry, and offer the ear of comfort to my sister-in-law. Mickey & I had some great talks tooling around in his BMW convertible sports car, nicknamed "Mood Elevator". Truly you can't drive the thing without a big grin on your face.

The Lesson:
Take care of myself. This is the umpteenth time my love, care, and wish for another reality has cascaded me down the canyon of despair, illness, and crankiness. I'm no fun to be around, and I'm unable to live my live, get my job done, get chores done, and do things for me, like write. It's no good all around.

My new commitment is to radical self-care, not evidenced by the fact it's 11:45PM and I'm still writing this post. But, I can start over at any time, even in 5 minutes.

A new pledge to my sleep, food, hygiene, work, and career transition has dawned. Starting...tomorrow. No sincerely, it's started right now, even before I wrote this. Already today I've done many things to care for me, like not going to a friend's party because I was too wiped out, etc. Every new step in this direction, no matter how big or small, is a step towards healing & growth. People keep telling me I can't be of service to anyone in my family if I"m a blubbering cranky mess.

The survival guilt is very strong though. It tells me I shouldn't be happy or live my life, because of what's going on with my brother. Somehow, I must sacrifice happiness and "a life" because he is losing his. No, it doesn't make any sense, but that's what's happening. Hopefully by writing about it sharing, reaching out to friends & family, talking about it, getting body work & sleep & eating well, I can overcome this guilt & continue to live my life in the best possible way. My brother would want it that way.

I leave you with beautiful fun images of nighttime at Black Rock City, from Burning Man.

In three words I can sum up everything I've learned about life — It goes on.

ROBERT FROST, as quoted in William Nichols' A New Treasury of Words to Live By

Labels: brain tumor, Burning Man, cancer, cancer survivor, family cancer, love, survivor guilt

Breathe.

08:55 Work

I was quite afraid to come to work yesterday, not knowing what kind of large pile would be in my inbox, and what people's expectations would be.

Bless my boss's heart for telling folks I'd need a few days to get back into the swing of things. But, how do you jump back into something when your heart isn't in it?

For those of you taking time off work to care for a sick loved one, take it from me on what _not_ to do: don't try to work while you are caretaking. That was the biggest mistake I made. I tried to keep tabs on things, and it did nothing but stress me out. Because, when people in the corporate world see you respond to emails, they assume you're working & are mentally up to snuff like usual.

One thing I didn't expect was to see my mental faculties, even just basic concentration, plummet. It was quite difficult to maintain my thoughts on a subject at length, or to remember what was said in a meeting even a day or two prior. I wasn't keeping accurate notes, and struggled to search for old emails or documents to aid my delivery. For someone who manages a heavy workload and is pretty dialed-in every day, not staying at that level was a shock to me. I thought something was wrong with me that I couldn't keep up.

By the time I realized this, it was already 2 weeks into my time away. So, I began to respond less, and redirect folks to other people or locations for information. By week 4, I simply gave up. But, people's expectations were based on week 1 . Now, I'm asking for people to get me up to speed, and help me remember what was discussed. It feels embarrassing & weird.

One good thing that came out of it was recognizing how I trained colleagues to come to me for the answer, instead of empowering them to find the answer themselves. During the last weeks, someone told me, "We train people how to treat us.". Giving some slack to myself, let's also be real about people simply being lazy, and not looking up the information with the tools they have. However, by being "nice", and helpful & answering everyone's questions, people come to me for fish instead of catching their own fish. A positive result was my seeing this, and responding with firmer boundaries. Probably I stepped on some people's toes, but I need to protect and care for myself now. My roommate calls this "mojo protection mode".

Much to my surprise, yesterday wasn't as bad as I thought it would be. It hasn't taken me as long as I thought to get back into "work mode" brain. Still, the question, "What am I doing here?" dogs me, and is immediately followed by "And how did I get here in this handbasket?".

I'm not even phoning it in, but snail mailing it. "Going through the motions" just feels yucky. But a good pal reminded me the other day "This too shall pass". I just don't want my life to fade away in passing, and wake up 20 years later in exactly the same boat. Starting this blog was one way to break out of the routine, and explore more creativity. We'll see how the rest of my crazy ideas go. More on that later.

Labels: astrocytoma, boss, brain tumor, cancer, cancer survivor, cancer treatment, caretake, co-workers, family cancer, friend cancer, spinal cord tumor, work

Breathe.

23:00 Intro

And so it begins...

Today I flew home after four weeks of caring for my mother while she wrapped up chemotherapy and radiation treatment for her grade 3 astrocytoma brain tumor. It's been a scary & difficult time for all of us, and so finally I worked up the courage to write about it.

But, there's more than just my mom, and just a tumor. The last 2 years have shown our family, and me, a succession of tragedies and challenges. Here is the summary chronological breakdown that I emailed to a friend recently:

Jan 08 - my grandma passed away (dad's mom)
Feb 08 - got into a new job at my company, where I still am
Jun 08 week 1 - my mom was diagnosed with a brain tumor, and had
surgery a week later; the tumor was benign
Jun 08 week 3 - my other grandma (mom's mom) passed away
July 08 to Dec 08 - finished my Project Mgm't certificate.
Aug 08 - tried to date a boy, but it ended horribly
Dec 08 - tried to date a boy, but it ended horribly
Mar 09 week 2 - moved to Oakland & rented out my condo
Mar 09 week 4 - my mom has a seizure and gets an MRI
Apr 09 week 1 - my brother complains of a back pain & tingling in his
arms & gets an MRI
Apr 09 week 1 - brother diagnosed with grade 3 cancerous tumor in
spinal cord & scrambles to find a specialist to operate
Apr 09 week 2 - brother has surgery
Apr 09 week 3 - mom diagnosed with grade 3 cancerous brain tumor
Apr 09 week 4 - brother starts chemo & radiation; continuing pain &
loss of mobility in all 4 limbs
May week 4 - mom starts chemo & radiation
June week 2 - my company gets bought by Intel
July week 2 - mom finishes first round of treatment
July week 2 - I drive mom & her car to Chicago to stay with my oldest brother
July week 3 - I finally come home

Sure, it's life. But, jeez! This is an awful lot of "life" for one group of people or one single person (me, let's say) to handle.

There are many other aspects to the unfolding misery, too. I'll create separate posts with various topics as they come to mind, so things are easier to follow.

Things aren't all bad. There are some wonderful things to be grateful for in recent months as well. There are always lessons to be learned in every situation, even if the lesson comes much later. I just hope I can survive to learn it...

Meanwhile, it's been an extremely long day of travel and unpacking, so I shall retire. Hooray for my first post!

LV

Labels: astrocytoma, brain tumor, cancer, cancer treatment, caretake, central nervous system, chemotherapy, health, healthcare, radiation

Breathe.