Unravel Cancer: Experiences with family battling cancer

11 May 2010

20:54 Mexico: the hard side

It's been several weeks since I returned from Mexico, but began cranking away at work almost instantly. But, that's ok - I'm hatching my escape plan.

The trip was harder than I expected, even though there were a lot of fun moments.

I went with my mom, her sister (my aunt), and my aunt's best friend from high school. We went to Guadalajara, and the areas near there.

My mom's health & mobility were much more compromised than any of us expected. She was quite worn out by the flight on the way there. She hadn't been able to sleep the night before, and was just wrecked for the first few days.

Additionally, she struggled to get on & off the toilet. For the rest of my days, I'll remember the acrid sting of her urine's odor as it hit my nose. I guess it's due to all the drugs she takes now.

It's a humbling experience to help your parent use the facilities. It's awkward, embarrassing, sad, and a whole host of other emotions all mixed in.

My mom also needed assistance with walking, getting in and out of chairs, and in and out of taxis. The first day in TlaquePaque, at a fabulous B&B called Casa De Las Flores, she insisted on walking 3 blocks to the pedestrian mall. After several stops, I had to almost carry her the last half-block, her energy was totally sapped. We took a taxi home.

She told me on Mother's Day that she had lost 4 pounds in Mexico, because she wasn't eating on her normal schedule. Well, that's part of why people go on vacation - to get out of their "normal" schedule! But, for someone on chemo & recovering from brain cancer, keeping a routine was important.

We all tried the best we could. The first week, and especially at the Rio Caliente in La Primavera, my aunt & her friend abandoned me to care for mom all on my own. By the second night, I was begging them for help. I was unable to relax at all, because I had to get her up & down this little hill to the dining hall. Between her treatments and mine, I was literally running back & forth between our room, the treatments rooms, the pool area, and the dining hall. Needlesstosay, I was pissed as hell.

Yes, I admit it: I was angry at having to go through all this. What about my vacation? Don't I deserve to relax, too?

My batteries were completely depleted coming on the trip, and being thrown into a challenging caretaker role in a foreign country where I barely speak the language was not what I had prepared for. I did actually mince words with my mom. By the next day, I felt guilty. She didn't deserve that. It wasn't her fault that she got sick. I apologized, but she didn't seem very accepting of it.

That was the hard part about helping my mom. She is a cranky, self-centered, whiny person. A pal told me that some people make good patients, and others don't. There's nothing "patient" about my mother. Sadly, she pushes herself too hard, and beats herself up for having this illness, instead of trying to love herself and heal gradually, over time. It's one thing to motivate oneself to not give up, but it's something altogether different if you're not allowing your body to heal.

Finally, as the week wore on, I got some space. It was just the physical space I needed, it was space away from my mom's kvetching about every little pain in her body, or every little discomfort in the bed or whatever. Additionally, I think my aunt realized how much I was dealing with, and she stepped up a little by the 4th day at the spa. This was a huge relief.

We had a nice time in the next town we visited, Ajijic, although it was chock full of expats. An aging, cockroach laden La Nueva Posada plus obnoxiously drunk Texans our first afternoon, put a pall on the whole place. Additionally, there were so many expats, that while the influx of money kept the sidewalks neatly paved, it created an "us" against "them" socio-economic dichotomy that left a bad taste in all our mouths. All the restaurants catered to the foreigners, and there was even a Walmart! It wasn't til the last night when our taxi driver took us to a local taqueria for the real deal Mexican food.

The last several days were spent in Guadalajara city, which while polluted as all getout, was lovely. Before the trip started, I asked my mom if she had planned to buy or borrow a wheelchair for the trip, but she said the cobblestone streets were too challenging, and she didn't think it would work. Besides, she wanted to walk & get stronger.

Nice idea, but not so much in practice. She managed to get out in a carriage ride the second day, but the seat was so challenging, and the carriage so bumpy, her back contorted into spasms afterwards.

It was hard for the three of us to see her constantly sleeping. She flew all the way to Mexico to nap for 3-4 hours every day?

Finally, the last day in GDL, I asked if the hotel had a wheelchair we could borrow, and they did. With the help of a local friend, we got her out to a neighborhood near the Teatro Degollado for a late breakfast, and some strolling through the pedestrian streets.

Additionally, I had a run-in with the a local tall, young, & handsome casanova at the jewelry mall, who tried to put the moves on me, when I thought we were just going on a stroll. Gotta learn some Spanish. It actually got kind of scary, but I did get out of there unscathed. Looking back, I think there was a lot of cultural and language misunderstanding. Despite the disappointment, it forced me to see yet again how I set myself up for misery in these kinds of situations. There were several times when i could have voiced what I wanted to do, but I didn't. After discussing with a pal, I realized in trying to be something I'm not, some kind of subservient ditsy broad because I think that's what guys want, I'm not being authentic. Not being authentic leads me into trouble like the kind in GDL. This reinforces my negative thinking that I'm doomed to never have a boyfriend, and then the cycle of setup for failure continues.

The silver lining is I learned a lot through these hardships. I'm certainly a different person than I was just several weeks ago, and I also can see now what it will take to be a parent. A shit-ton of patience! And, being authentic.

Up next: "Mexico: the good side". Yes, it was not all this doom & gloom. I just wanted to save the lighter side for last.

Labels: cancer, caretake, family cancer, Guadalajara, Mexico, relationships

Breathe.

22:54 Olympics

It's amazing what the gold medal men's hockey round and a couple glasses of wine will do.

While traveling in Europe battling wind storms & mayhem to get to my destination, I finally arrive at the hotel about 15 min into the final game. Immediately all politeness goes out the window, and I implore the hotel staff to turn on the game on the bar TV. "What the hell, I'll have a glass of wine to celebrate making it to my hotel & the game", I thought.

After all my yelling, hooting & hollering at the screen with saves, scores, and near-misses, eventually a fellow conference-goer joins me. By then, the glasses of wine consumed are double, and we are chattering like fools. But, it did help to take away the sting of the OT loss. It was partly hard to cry, because one of my favorite Blackhawks players scored the first Canadian goal.

Still, I truly thought we had a shot after the "miracle" goal at 24 seconds left in the third. That was truly unbelievable!

Anyway, as we began to drown our sorrows in the third glass of wine (mind you I really don't drink & have zero tolerance), I mention this very blog to my hockey compatriot. It turns out, he had a sister die of cancer at 38 years old!

He himself said cancer is everywhere, and it can strike at a moment's notice, with no regard for age, race, location, etc. Despite the pain he went through, I was so grateful he shared his story with me. It reminds me of the strength a person achieves when they have endured watching the suffering of a loved one. It reminded me of my quest for a new career, to move into an area that is less about the bottom line and more about the filling of hearts.

It also reminded me of something I don't consciously think about on a daily basis: my mom & my brother will die. It may not be tomorrow, it may not be the next day, but it will happen. It may not even be the cancer that takes them, but there will come a day when they are no longer with us.

It was a very humble reminder that all our days are numbered, and that we never know when our cosmic pink slip will be issued.

When people meet me, they don't understand why I have so much energy, why I get fired up over a hockey game, why I feel so passionately about the gargantuan efforts of Olympic athletes, or why I talk on & on about the killer climb I did last weekend. They don't understand why I spend 3 days camping in the woods in the middle of winter, or the thrill of the powder run we nailed on the Day 2 hike.

They clearly don't understand that I live. I live each day, each moment. It's the times when I push my body to its limits, when I push my mind beyond the edges of its comfort zone, that I feel most alive. The times when I can be of service are the most beautiful, like caring for my mom while she was in her treatment.

People tell me I'm crazy to be willing to move in with my mom when her chemo is done, since she can't afford a long-term care facility. But, what else could I do? Even though it might be two steps away from hell, the opportunity to be of service to her and her failing body is not something I could pass up. It gives me the gift of humility. It's what has helped me to be cheerful & happy & polite & friendly to all those I have met in Europe, even when stranded in Frankfort for 10 hours. (When I finally reached the airport ticket counter for my train transfer, the first thing I did was thank the attendant lady for her help. It made her smile & feel good. Such a simple thing!)

When my hockey buddy got embarrassed a few times telling me his story, I told him about the fellow I met at the climbing gym, only weeks after returning from caring for my mom, and the fantastic support we offered each other as his dad was dying. I told him that sometimes cancer is like an odor, and all those that have seen it, been through it, and survived, come away with a stink that just won't wash off. Others with the same smell are oddly attracted to one another.

So, we carry on. Today is the first of two jam-packed days of meetings. It's so nice to be out of the office and actually doing my job, which is talking to people & making friends. I just hope I can put these skills to use for a bigger cause someday soon.

Labels: cancer, cancer survivor, career, caretake, ice hockey, Olympics

Breathe.

10:47 What matters

Still feeling crusty & tired & low from yesterday's grand situation. (The term "gut-wrenched" has taken on a new meaning. Could have been the spicy sausage I ate...) The reason I'm still giving it more energy, and not moving on is this: family.

Family matters more to me now than it ever has. The biggest struggle since returning from helping my mom, is knowing that I'm living a very boring, stade life with no family in it. I would really like my own family.

Last night my roommate said, "Right person, wrong timing". This is true. Nobody has done anything bad or wrong.

Meeting someone who could potentially be that family person, is what makes this hard. Since my fulfillment in life isn't coming from my career at the moment, regardless of whether I change that or not, it's the comfort of family, having people to care for & rely on you, that seems to matter most to me these days. Somehow, this seems to be the "God-sized whole" in my heart.

So I remind myself to trust. God has something more in store for me. I'm not sure what it is yet. But, at least now it's out for all to see & hear: I want to have a family of my own. Dang it.

Meanwhile, I will try my sponsor's suggestion, and be "family" for my friend who had twin baby girls not to long ago. There's family to be had all around me, if I just keep my eyes & heart open to let it in...

Labels: career, caretake, family, fulfillment, love, satisfaction

Breathe.

00:29 On my way home

For the second time this year, I arrived back in Oakland from visiting my mom and wanted to cry.

She's really not doing well. Probably she'll never be fully abled again. She's walking much better now, and doesn't need a cane. Her medication to stop the tremors on the right side of her body is really helping a lot.

But, there is much she can't do, like make her bed, clip her fingernails, and sit for any length of time. The sitting part is due to her substantial weight loss. Essentially, her butt fell off. So, now all the chairs feel uncomfortable. It's time to get her a butt pillow, to carry with her everywhere...

It's silly, but also sad. I helped her with a lot of stuff this weekend. We shopped at Kohl's for some much needed "shuffleboard outfits", which she likes to call that casual wear that's one step up from a tracksuit, but still is a matching pant & jacket set.

She hasn't asked me directly to move back to Chicago. She doesn't want me to give up my life or my career for her. But, it's really hard for me to see my oldest brother (not the cancer one) get stressed out at her all the time, for no reason. It's painful to hear that she is left out of their family plans until the last minute. Nobody likes to be ignored.

I don't know what I'm gonna do. I can't take care of her 24/7. She needs a home healthcare person to help with fingernails, and other grooming items. But, now there's a question on whether she can afford it.

I spent a night & a day in downtown Chicago for a conference, before my family visit in the suburbs. Even though the weather was poop, there were so many people in the South Loop! The neighborhood has really changed. I walked up to the Art Institute Friday afternoon, because I heard there was a new modern wing that opened up. It was fabulous! Almost better than the art, the view on the 3rd floor of Millennium park & the skyline behind was stunning. The architects did a great job of allowing that view in. Lots of big windows to gaze out at the fall colors in the park, and the majestic city beyond. All my favorite buildings were still there...

For the first time since I left home, I felt the calling to return home. Even though the Loop is only one small part of Chicago, it reignited a long-dulled flame in my heart for the city. It's why I lived in San Francisco for 12 years. Yet, the cool thing about Chicago, is you can easily find a neighborhood close to the action that's more residential & quiet, with single family homes even. My Aunt & Uncle live in a neighborhood like that. It's quite similar to where I live now in Oakland. I often comment to people how Oakland reminds me so much of Chicago.

Anyway, it just might be that I spend the next year climbing every rock I can find, so that I can get my fill. For when I return to Chicago, there won't be any rocks there.

"How will you get your fix?", you ask. Well, I'll just have to open my own climbing gym... :)

This is all just off-the-cuff emotional unloading since my return. But, still, the desire to be close to my mom, and my nieces is pretty strong. And, I'd really like to have a family of my own. There are just so many more eligible men there, men who know how to ask a woman on a real, actual date.

I saw a young couple in a cafe I had stopped at in the city, on a first date. The young man was so excited to talk to this girl. He was asking her all about herself, and really enjoying the things she said. Say what you want about dudes and their agenda, but he seemed really sweet & tuned into her. It was a lovely site.

Knowing my crazy self, it won't work out like that for me, but at least I'll have a better shot, in a city with cool dudes, like Chicago. All the dudes I met at the small climbing gym in Homewood seemed super down-to-earth, and cool.

So, like many things, we'll see...

PS: Did I mention the fall colors? Oh, man! They were so beautiful. Hearing the leaves crunch under my feet as I walked down the street brought me so much joy! I had forgotten how amazing a Midwestern Autumn is.

Labels: caretake, Chicago, dating, healthcare

Breathe.

03:39 Grief: takes a lickin' and keeps on tickin'

It's that time of the month when my baby hormones kick in, and my body seeks impregnation. After taking a 2.5 hour nap this afternoon, dreaming of hot young dude bodies with giant schlongs, I knew I needed to make a date with myself.

The last few days have been pretty rough at work. Lots of long hours, with me not taking very good care of myself as a result. My head really went up my butt around trying to not let any of the 742 balls in the air drop. Earlier in the week, I had a great experience with the 12-step work I'm doing. The realization that focusing on my feelings all the time creates a very self-absorbed me, was astonishing. For the first time, probably in my life, I didn't squawk about how crappy things were at work, but just put my nose to the grindstone, and tried my best.

By the end of the week, however, my anger & frustration at the situation with an impending project launch could no longer be contained. Fortunately, I have tools to cope with the crap life dishes out at oneself. I managed to not lose my job, blow my stack at my boss, or go postal in general. I'm very proud of this fact.

However, I've gotten into this mode before. My yoga teacher calls it, "reporting for duty" mode. It's like I'm in the armed forces, showing up with my uniform, saluting, and leaving my emotions & vulnerability behind. Being in this mode had quite a negative affect on my body. My massage lady was blown away by the tightness of my jaw on Friday. But, despite all the workplace drama, she said, "Well, your head is still attached to your neck, so that's a good sign." Thank goodness I'm not running around like a chicken with my head cut off! Although things are tough, I could be reacting a lot more severely & be in way worse shape. I could be allowing my nerves to snap and start at the sound of my boss' footsteps outside my door. But, I'm not. Through gritted teeth & tight belly, somehow I'm managing to breathe. Hooray for progress!

As a result of this great massage, my body has opened up to it's inherently hormonal state, a state I had been pushing aside all week in order to get through everything. As I was "taking care of business" with myself tonight, a curious thing happened: I began sobbing. I cried & cried, not knowing why or what for. With each spastic undulation of pleasure in my body, the tears became larger and the sobs louder. What was this all about?

I'm still not sure, but grief comes in mysterious ways. That's the only feeling label that seemed fitting. But, what was I grieving? Earlier in the day, I had a really nice convo with my mom. She's kinda back in "everything/one is out to get me" mode, but despite the downer energy, I still enjoyed talking to her. I told her about my fantasy to move down to Mexico with her, get a 2-bed hacienda in a small town someplace, and live out the rest of our days. She said, "When do we leave?". That was a great sign. She is a tough lady, and is using a trip to Rio Caliente sometime in the coming months as her personal carrot for health improvement and recovery.

The only thing that came to mind, was an instance where an emotional reaction from self-"love" happened once after I had taken a bad fall rock climbing outdoors. When I received bodywork a week later, it opened up vulnerability and fear in a way that allowed me to feel it, because the fall was too scary to acknowledge those feelings. My pals & I were climbing in Pinnacles, and I was trying to lead a 10a sport route, that was traversy & clugy at best. I fell at the 2nd clip, broke the branch of a small tree, and slammed my knee into the head of my belayer. It was a total miracle that I didn't deck.

So, it's quite possible that tonight's solo love making again tapped my heart into some emotions that I wasn't allowing for, like vulnerability and grief and sadness.

The fact is, I really miss my mom. It finally hit me Friday afternoon, when a fire at work that was burning particularly hot called me on my cell for the umpteenth time while I was on the way to the massage lady: I really didn't care about any of this work stuff at all. It became so obvious to me that my job and all the efforts & people in it, are totally inconsequential, compared to the suffering of my mom & brother. I desperately wanted to be at my mom's side, to help her & make sure she was comfortable. She talked a lot about how my brother & sister-in-law (the not sick brother), don't like to eat the same healthy things she likes, like nectarines, melons, papayas, greens (mustard, collard, kale, chard, etc.), and spinach! Can't forget the spinach. She ate so much spinach in Denver I was waiting for the "Aig, gai, gai, gai, gai, gai" laugh ala Popeye. The rest of the convo was mostly chit-chat, but we both stayed on long after we had anything meaningful to say in order to hear each other's voice.

So, here I am, not being Popeye the Sailor Man, not eating spinach, no longer crying (thankfully), but not sleeping either.

Life could be way worse, like the gal who's husband has a brain tumor. Her posts helped me to learn more about what my sister-in-law must be going through. She & my brother are best friends, truly soulmates. Seeing that potential future of love & happiness wash away is certainly devastating. For me, knowing that these dying people are my family, there's a sadness, loneliness, and isolation. No matter how many great friends I have, it's my family that's known me the longest. Other than my mom & dad, I know my brothers the longest, too.

Meanwhile, it's that time again. No - not that! It's time to sleep! *sheesh* You people have dirty minds...

Labels: cancer survivor, caretake, family cancer, masturbation, rock climbing, vulnerability

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.