Friday, June 28, 2013

My Story Begins

Today I had my first appointment with Dr. A and this time I was the patient.  Kinda strange. It was the first time seeing him in person since mom was in the hospital and entered hospice care. We had communicated via email and phone a number of times since mom passed back in February.  I knew that my preventative endoscopy was long overdue (the last one was early summer of 2011).  I was suppose to get one last year but with mom getting diagnosed and then me getting pregnant, it was advised to wait until after the baby was born to do the procedure. I was fine with this because I did not want to cause any complications while pregnant.

Earlier this week, I reached out to my genetics counselor and Dr. A on the course of action for me going forward. I was now 9 weeks post-pregnancy and got the OK from my OB that the procedure would be safe to do now.  I wanted to be as proactive as I could be even though flashes of my mom's endoscopy last May brought back some very painful memories.  

Dr. A wanted to meet in person and go over everything. I decided to meet him at a different clinic. Apart of me just didn't want to go back to the clinic mom went to. Too many familiar faces, and I know there would be questions from all the chemo nurses and staff who were fond of mom. We were regulars there for most of last year and I just didn't want to see that look of sadness when I tell people what happened. I wanted to dust that off and start fresh and I did.

I decided to take Baby C with me too. I felt that I needed to be with him. He was going to get me through this. His smiling face gazing at me...his cooing...and his eyes just looking deep into mine. That is what this was about. 

As I waited patiently for Dr. A to come into the room, a familiar face peeked in. It was my genetics counselor! She was a site for sore eyes. Coincidently, she was just making a quick stop at this clinic location and ran into Dr. A in the hall who mentioned I was there today. We sat and talked for a few minutes. We oogled at Baby C as he talked baby gibberish. She told me of some interesting studies in the genetics world for diffuse stomach cancer. Interesting stuff!

Shortly after she left, I had my consult with Dr. A. We went over A LOT of information. The first thing he told me was that he wanted to coordinate my care going forward. He said that the research from BC Cancer Agency was still in the works and we don't know anything concrete right now. So, going forward,  I have to assume that I am positive for the genetic marker in order to be as agressive with prevention as possible. He definitely wants me to get going on routine endoscopies. Instead of once a year, he recommends twice a year. Also, he said that he is going to find a GI that is local who would be best at early detection. He wanted expertise. We also explored other testing that I will eventually have done in the coming year or so: endoscopy ultrasound, CT, MRI, breast cancer monitoring, and colon cancer monitoring. As you know, having the CDH1 marker not only makes you pre-disposed to stomach cancer, but also breast and colon cancer. He wanted to make sure that all angles of this were going to be looked at. We also chatted a bit about prophylactic gastrectomy..which we will explore down the road here.

I left the appointment feeling empowered. A beautiful sunny day, the wind in my hair, my son in the back seat..I felt good. I can't predict what the next few weeks, months or years will bring. But, what I do know is that life is worth living and I'm going to be calling the shots every step of the way in order to see my son grow up. 

Friday, June 21, 2013


Is there a Death? The light of day
At eventide shall fade away;
From out the sod's eternal gloom
The flowers, in their season, bloom;
Bud, bloom and fade, and soon the spot
Whereon they flourished knows them not;
Blighted by chill, autumnal frost;
"Ashes to ashes, dust to dust!"
Is there a Death? Pale forms of men
To formless clay resolve again;
Sarcophagus of graven stone,
Nor solitary grave, unknown,
Mausoleum, or funeral urn,
No answer to our cries return;
Nor silent lips disclose their trust;
"Ashes to ashes, dust to dust!"
Is there a Death? All forms of clay
Successively shall pass away;
But, as the joyous days of spring
Witness the glad awakening
Of nature's forces, may not men,
In some due season, rise again?
Then why this calm, inherent trust,
"If ashes to ashes, dust to dust?"

Since my mom's passing in February, my sister and I have been holding off on spreading mom's ashes. Mainly, because it was winter here in Minnesota and mom wanted her remains to be spread over a body of water and all was frozen over. She left the decision of the exact location up to my sister and I. She said to do whatever we thought was best and was easiest for us.

Several weeks ago, a week before my mom's 61st birthday, we decided to finally take care of this piece of unfinished business. We decided to spread the ashes along the Mississippi River. We found a serene beautiful spot along the river. We choose this location because it was close to where she worked and lived. She loved living in downtown St. Paul and enjoyed walking along the river bank when the weather was nice. It seemed fitting.

It all worked out perfectly. My sister was in town helping me clean out mom's place that weekend along with my aunt and uncle (parents of the cousins I lost of the same cancer)  It just felt right that we were all together and knew mom would approve of it being done at this time. It was so nice to have my aunt and uncle there because due to some unfortunate circumstances, they were unable to come to the funeral. So having them be a part of the finality of life ceremony, meant a lot. Mom would've been so happy. 

My uncle (mom's bother) lead the informal ceremony with some personal words and then sang a religious verse in Hindi. My sister and I held mom's ashes and slowly poured them into the water while my aunt assisted us, as she always has. When we were done pouring the ashes, we saw three ducks swim by. We all smiled. I like to think that it was a sign...Mom, Rajen, Sandra. After we finished, I felt release. I felt mom's spirit was there with us..telling us that she's ok and to move on. Telling us that she's with Sandra and Rajen now and she'll see us again someday.

Thursday, June 13, 2013

Buried Memories

Over the last few weeks, I've been handling some unfinished business that I finally felt strong enough to tackle. As you can imagine, the first few weeks after having Baby C has been bittersweet and it really took an emotional toll on me especially in post pardum and mom being gone (will take more about this in a separate blog post).

The first thing that I have been dragging my feet on is opening the two suitcases that I quickly packed the morning mom passed from the hospice. I don't really know why I couldn't open it -- mom passed in February; it was now JUNE. I had the two suitcases in my spare bedroom and would always glance at it in passing and just didn't have enough courage to open it up. I guess apart of me knew that once I open it, I'd relive that morning. I'd see the pants and top that the nurse took off her body as they prepared her body to move to the funeral home; the soft pink robe I got her cause she was always so cold in her final days; the wig she wore at the beginning of the journey but later just wore hats; the small trinkets, notes, pictures that sat beside her on her nightstand. I'd smell her favorite perfume and her unique scent.

I guess when it came down to it; I was just plain afraid to relive that morning. Being woken up in the wee hours of the morning, rushing over to the hospice, entering her room and just seeing her lifeless body there. She wasn't made up and didn't look like how she did at the funeral funeral. Instead she looked sick, and lifeless. The one thing I remember was her jaw dropped which was normal of the deceased. That's an image that will haunt me. I didn't want to remember that again. I remember taking a picture of her because my sister wanted to see her (a few weeks later, I deleted the image from my cell phone). I wanted to remember her happy, smiling and lively.

Well, a few weeks ago, I was telling my husband about how I should really open it so that I could get her iPad out to give to my sister when she visited. My sister worked very hard at putting so much on there and I knew she'd want to keep it. I knew I had to open it. I sat there just staring at it. My husband saw this, grabbed the two suitcases, brought me closer and just opened them. He helped me go through it to find what I needed.  I thank him for that. I couldn't have done it alone.