3/28 scan results

Overall the scan results are good.  Everything is still getting smaller in the abdomen.  The dr showed us the scan and it is terrifying to see how much disease there was back in September and to compare it to now. Although things are shrinking there are a lot of tumors in the abdomen.  The radiologist noted that the spot on my lungs they have been following increased in size a tiny bit but the dr looked at it and didn't agree.  They are just keeping an eye on it.  The dr wants to do another CEA test after my vacation and if my markers have gone up she wants to do another scan just to get a baseline after my break. Overal good news!  Thanks for the prayers!

conference

The conference was fun, it was good to meet other young people who understand what it's like to have your life taken from you at a young age and thrown into treatment and surgeries.  We were able to connect with one couple who has young children so that was nice.  I would like to go next year, I am curious to see the topics they have for discussion next time.  I went to one on nutrition and one called to share or not to share.  It felt like it ended up turning into a group therapy session which wasn't a bad thing.  I found that a lot of the other young people there had been in remission for years which was good to hear but also hard to hear.   It was interesting to meet everyone and hear their stories, I am glad we went.

I heard about another dr who works with my current oncologist that might be a better fit for me.  I will see what we think of the new one at mass general first and decide if we want to meet another one.  This other dr, the couple we met sees him and he is on a few clinical trials so I was surprised. 

I will try to blog if I can tomorrow at the hospital about the scan results. 

scan and conference

So this Friday I get a CT scan.  I have had 12 treatments on this type of chemo.  Last year my regimen was 12 treatments and we all thought I was in the clear.  I can't believe I've already been through 12 more!  Unfortunately there isn't an end in sight, nothing to celebrate really.  I am anxious about this scan just because i have had so many stomach issues lately.  Unfortunately the chemo can cause that so it's hard to tell what is going on.  I will find out the results of my scan at my apt before my chemo on monday the 31st.  I assume if there is anything new showing up we will have to dicuss where to go from there, I don't see a point in doing the same chemo if we have growth. 

The young cancer conference is also this weekend.  Bryan and I are going and since there are a lot of sessions I want to attend but you can only choose 2 to go to I think we Will split up and that way we can get more info.  I really hope to connect with another young couple going through something similar, if we make one friend I'll be happy :)

I am also working on getting an apt with the top clinical trial GI oncologist at Mass General.  My oncologist that I have seems reluctant to discuss clinical trials with us because my treatment i'm on is working.  Bryan and my thoughts are that we'd like a plan for when this chemo stops working.  It could happen at any time, the average this one works for people is a year and we're half way there.  It is constantly on my mind that at any time I could start heading where I was in september and be in so much pain and realize that it's not working anymore.

Well I hate CT scans because the stuff they make me drink makes me sick every time.  We got a hotel in Boston to stay up there after since the conference is the next morning at the same place.  We have friends watching the kids for the night and I am looking forward to a night out, hopefully I won't be too sick!

Cancer card

I've heard from several people talk about loved ones with cancer excercising the right to use a cancer card.  I kind of like this idea, it allows other people to show their compassion.  Its my understanding the cancer card is something you can use if you aren't feelin well or are being asked to do something that you don't wan to do.  You can pull the cancer card as an excuse to not do something and no one can say or do a thing about it.  Or it can be used to get a special deal.  Sounds like a genious idea to me.  There are countless times that I've felt like due to my illness I should be exempt from normally required activities.   I also believe pulling the cancer card should gain you access or special privileges to things not everyone gets.
  My only experience pulling the cancer card so far is when I was in Arizona last time.   I pulled the cancer card to get a discount on a hotair balloon ride.  Since the ride didn't  happen I need to see if I can pull that off again this next trip.  Just for the record, balloon rides are a couple hundred dollars, so it was well worth the usage.  I was honest and told the woman I had terminal cancer and its been a dream to go on a balloon ride and asked if they had any discounts.  She immediately offered me and my mom the child's price which is about $100 cheaper than the adult price.  This just goes to show that you can't have a cancer card without people that are going to accept the card and have some compassion.

Worst chemo ever

I feel like this week has been the worst in a long time. For one, it's our first chemo without having a grandma living here to help out.  So that immediately makes it more difficult for so many reasons.  Then for the first time ever I got sick to my stomach the day I got chemo.  Since my son ended up sick a few days later we figured out I must have had a stomach bug at the same time as the chemo.  Which makes sense, I have always gotten extremely nauseous but never gotten sick.   I still have very low energy, By this day after chemo I'm usually running on the treadmill and that is not happening today!

Anyway, Please pray for me.  I have some horrible vision problem that happens a few days after chemo.  I have been given medication for it but it isn't working like it used to.  I am just not feeling myself lately and it makes everything harder to deal with. 

Hope everyone else is doing well, the weather has held out a bit for us.  The only thing that's keeping me going is that we planned a family trip in April and I get to skip a chemo treatment for it.  I am super excited about that!  We are going to visit my family in Tucson!  It should be in the 80s and sunny!

awakening

"Everything we do can be done with one intention, to wake up, to ripen our compassion, and we want to ripen our ability to let go, we want to realize our connection with all beings.  Everything in our life has the potential to put us to sleep or wake us up, allowing it to awaken us is up to us."

I feel like this idea of allowing things to awaken us is so applicable to my life.  Instead of just shutting down and going to sleep over what I am dealt with, I want to be awakened and do with it what I can to make a difference.  Someone emailed me yesterday saying that they read some of my postings and that it encouraged them to reach out to a friend in need.  That was the greatest gift to me, to hear that my words were encouraging to someone and that the encouragement allowed that person to touch another's life.  How much better of a gift could there be?!

weather and the 4 noble truths

There are four noble truths according to the buddahs first teaching:
1.  It's part of being human to feel discomfort.  All around is the changing weather and we fail to see that we are like the weather, that we ebb and flow like tides and wax and wane like the moon, therefore we are fluid, not solid and so we suffer. 
2.  Resistance is the fundatmental operating mechanism of what we call ego, that resisting life causes suffering.  The cause of suffering is clinging to our narrow view, ME.  We resist change and flow like the weather, we have the same energy as all living things.  When we resist we make ourselves solid, resisting is whats called ego.
3.  Suffering ceases when we let go of trying to maintain the huge ME at any cost.  When we let go of the thinking in meditation and the story line, we're left just sitting with the quality and the energy of whatever particular "weather" we've been trying to resist.
4.  We can use everything we do to help us realize that we're part of the energy that creates everything.  If we learn to sit still like a mountain in a hurricane, unprotected from the truth and vividness and immediacy of simply being part of life, then we are not this separate being who has to have things turn out our way.  When we stop resisting and let the weather simply flow through us, we can live our lives completely.  It's up to us. 

I liked this chapter because it shows that only we can stop our suffering and it's all in how we view things and how we let it shape us.  We suffer when we focus on ourselves and if we can let go and stop resisting change we can live our lives.  This chapter kind of explains what meditation is and how it can help when you're suffering, it can be so empowering to be able to do this, I wish I were better at it!

warriors

I'm reading a new book and I'd like to share some excerpts from it over the next few postings.  The book is called, Comfortable with uncertainty.  The book talks about what a warrior is and I liked this part:
 A warrior accepts that we can never know what will happen to us next. We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe.  But the truth is that we can never avoid uncertainty.  This not-knowing is part of the adventure.  It is also what makes us afraid. 

I have to agree that the not knowing is very scary and makes me afraid.  And I have to say the adventure I have is not one I would have chosen but it is what I was given.  I try every day to learn to accept it and accept that I cannot change it.  I can only change how I chose to handle what I was given.  A lot of people have used the word Grace when describing how I handle my cancer, I kind of like that.  I certainly try to have grace and acceptance and I think that's what warriors need.