Wednesday, May 26, 2010

Venturing back

In a way, it is hard to get back to blogging. I have this huge list of blogs to write about, but I haven't really felt like blogging, I have been overly busy and well, I just haven't been in that frame of mind. I blogged, in large part this last year, for my mom. She loved the safe haven of my blogs and hearing the stories about the kids. I purposely kept the majority of the cancer details out of my blog.

I enjoy blogging. It's cathartic to me. So the best thing to do is dive straight in I suppose. This is going to be an unusual post from me. It's lengthy (that's not unusual, I tend to be wordy, but you can deal or click away). There is love. There is anger. There aren't too many laughs. And not a dang thing funny that my kid's have said. But it is what it is.

My mom passed away after a 14 month battle with a rare type of liver cancer called cholangiocarcinoma. She was the picture of health so recently, nearly vegetarian, a marathon runner, a hard worker. And young. She was only 56. She had done everything right. She was not one of the risk categories for liver cancer. This took us by storm.

She battled hard until she could battle no more. The problem with rare cancers is that the drug companies don't invest resources into making drugs targeted at a disease that only 4000 people in the US get a year. All the chemos she tried were being used "off label". She battled and battled. When she wasn't on chemo, she suffered heartache. She needed to fight.

When I visited her in March her oncologist took her off chemo and very kindly and tenderheartedly suggested Hospice. Only 6 weeks later, on May 10th, the day after Mother's Day, she lost the hard fought battle.

She entered the Hospice ward at a hospital a few days before as they were unable to care for her at home. At that point she was lost in her body. She did not speak, nearly comatose from what I understand, but eventually did start responding a little in her own way and finally saying a few words on Sunday.

On Mother's Day she mustered an "I love you" into the phone. I didn't hear it, though I think I had the phone up to Skadi's ear at the time. My baby heard her grandma tell us she loved us.

My mom passed away quietly that Monday. Her breathing had changed that morning and while holding Rick's hand, she just quit breathing.

It has been a very surreal experience. I flew to Colorado that Tuesday morning, afraid to look at anyone for fear that they might expect me to speak to them. I buried myself in "Breaking Dawn" - the least likely book to remind me of my heartache while I travelled. On Tuesday when Rick picked me up, my guard came down. We cried and talked for three days.

The after.

I have learned through this experience how atypical my mom was. Also how I have apparently inherited this atypical-ness. And why this is atypical and not typical, because I didn't realize beforehand that there is certain expectations that those left surviving are "supposed" to uphold. It appears I have faltered in many of them.

My mom did not want a funeral or burial service. This did not surprise me at all, I remember when I was 13 years old and my grandfather died and how my mom complained and was creeped out by the whole process. Instead, we will give us all a bit of time to mourn and then hold her Life Celebration in Colorado on July 17th.

I have felt through the last year or so a lot of judgement placed on me, my mom and my family by others. There are times where I wish that I wouldn't have even shared what is going on so that *I* don't have to live up to what other people expect in situations like this. So that *I* have not had to explain to others my mom's wishes.

I have often wanted to yell at people. (And I don't normally yell... but anyways.) I have wanted to YELL, "What do YOU believe I should be feeling? Why isn't my path appropriate? Why can't you accept the way MY family is without forcing YOUR expectations on me?" I found that much of the perceived judgement came only from those people who in no way had persevered this magnitude of loss, could in no way have any idea what was going on.

Those friends of mine who had or are going through similar issues, were the softest, the gentlest and the kindest.

Everyone is different. My mom was a different person. An intensely private person. My mom took huge pride in my sister and me. In me, she was proud of my degree, proud of my work, proud of my kids, proud of where AB and I have positioned ourselves in our lives.

And I will never forget one of the last things she told me in person as I hugged her small frame goodbye for the last time.

"You are where you are supposed to be. You have your family. You need to stay there and take care of my grandbabies. A lifetime is not defined by a moment in time, a moment of passing." She didn't want an audience. My mom never wanted an audience in her entire life. She wanted to go quietly, softly and rest in knowing she had passed her being on in at least five people in the world - myself, my sister, and our kids.

It felt right for me to return to work shortly after my mom's passing. Truly, if her passing had been less expected, not something we prayed to God about to take her softly and to remove her suffering, then I would have needed a lot more time. But my grieving, my getting used to losing her, was something that was spread over a year. I grieved with every setback in her diagnosis, every scan that showed the cancer advancing, every doctor who regretably, could not help her. I grieved. I hoped, but I was also a realist and therefore I grieved.

I embarked upon two weeks of business travel a week after my mom passed. For months I had talked to my mom about this travel. She knew how I loved going to DC and she knew how I looked forward to riding the train to Philadelphia and then spending a few days gawking at big-ass boats like a tourist. She was excited for me to go to one of her favorite places, New Mexico, and to experience the desert Southwest. In those last few months of her life, she raved about sopaipillas and art galleries and her love of New Mexico. Not going on my travel served little purpose. I knew that my mom would have wanted me to go.

During these past three weeks one thing that happened that shocked me, was that "friends" were defined. I bonded with Jen from high school who was losing her sister in law in a similar fashion through cancer, her sister in law died days after my mom did. I bonded with Erin from high school who lost her father and was a tremendous resource. I met my mom's closest friend, Noreen, who was a tremendous sounding board for me during those last few weeks and the person who kept me talking and sharing experiences with me when she lost her sister to cancer.

I hung with one of my coworkers in DC who knew exactly what had happened, had prayed for us, and then didn't let me out of his sight. I had to convince him I could walk across the street to Starbucks by myself (and to the shop next to that to get Advil for that raging headache). He didn't say a word, but the way he looked at me out of the corner of his eye asked me if I was ok every hour or so.

My very close friend Melissa kept it real by e-mailing regularly, asking only occasionally how things were, but all the time realizing that life still goes on and sharing all those little details that friends share about their days.

I cried with Rachel whose father has recently been diagnosed with a rare cancer.

I sobbed under Heather's hand in the bathroom at work when I got that phonecall.

My Philly client took me off to the side after our review and wanted to know how my kids were doing with my mom passing, and when I started talking and kept talking and finally had to tell myself to shut up, she asked me more questions to keep me talking.

I drank beer with my lead engineer and talked NBA finals, never mentioning my mom. His kind e-mail to me days before said it all.

There are others. I can't list the compassion of everyone during these last three weeks. But actions resonated.

Life goes on. I am grieving. I will be grieving for a long time.

But I am not fragile. I will not break. I have two children who, for the most part, haven't felt the impact of the loss and who still need to go to school daily, finish up baseball, still behave like the biggest goofballs alive, and strive to make me smile. I love life. I am dealing with my loss my way and when I am able.


NanaNor's said...

Hi dear one, What an incredible post April, just one I'm so sorry you had to write-wish your mom was still with us. Oh how I miss her but I know my loss can't even compare to yours, your families and Ricks. Last night as we watched a movie, I sobbed, for I don't think I've really let all my grief out yet. I can hear your mom scolding me though, telling me not to be sad. Hugs to you and yours-my love and support is here for you in any way you need it. So glad you have so many friends there also.
Love & prayers, Noreen

Dad said...

Love you.

Vargasgirl said...

What a great post! Been thinking about you a lot. Sending you lots of love. I hope you are having a relaxing holiday weekend.

Kacey said...

What a beautiful post April. Thank you for sharing this experience. You are in our hearts.