more balloon photos

The balloon chaser who follows the balloon to pick us up at the landing site took these photos of us in the balloon.  I thought they were so awesome I wanted to share!

Happy Easter everyone!  We are having a nice day here, filled with swimming and eating outside!  Loving the sunshine!

Hot Air Balloon ride

Well it took 2 days to get to Arizona!  Our first flight was so delayed on Tuesday that we would have missed our connection so we all went back home and tried again Wednesday and we made it.  Then got up at 3:30 this morning to get to the meeting place for the balloon ride.  We then took a bus to the launch site and watched them set up the balloon.  Here are some photos from the trip.  My favorite part was seeing a coyote chase after a jack rabbit when we got pretty close to the ground.  The highest we were was 2,500 feet up and the fastest we went was 20 mph.  Very awesome experience and so glad I was able to share it with my hubby and some random stranger who was also on the flight :)

 blowing up balloons

I was a little shocked to hear, after our great landing, which wasn't as bumpy as the pilot had alluded to, that this was his first upright landing in about 4 days!  Usually the basket tips on it's side and everyone is holding on not to get dumped out!!  So glad that wasn't our experience!

 The balloon after we landed in a farm field

 View of mountains from the balloon, and the moon

 other balloon we were following the whole trip, not as pretty as ours huh?

Just thought this was cool to see our shadow on the farm fields before we landed

Guess what I'm not doing today!?

So today would normally be a chemo day for me.  I get nauseas just thinking about it, and hearing the word "chemo", but alas, I am not driving to Boston today, I am packing!  I booked my balloon ride for Thursday, it's bright and early 5am, so you east coasters can think of me and bryan flying at 8am, I can't wait to share photos!

I was able to spend some time yesterday with a friend of mine who is going through a clinical trial for ovarian cancer.  Her trial seems very similar to the one I am interested in and is also done at Mass General.  It is just taking two different kind of drugs in pill form that are designed to stop cancer cell growth.  She seems to be doing well and I won't forget her words that gave me a feeling of relief.  She does have side effects from the drugs that aren't pleasant but she said "it does feel like a break from chemo."  And the good news is her trial shes on seems to be working!

We leave tomorrow and as Elly says, "we are on vacation for 14 days!"  very exciting!  and as Drew says, "we are going in an airplane way way up to see Nina in Arizona!"  I think since my mom was staying with us for so long they are extremely excited to see her.  My dad and his wife and kids and my brother and his girlfriend are also out in Tucson so we will get to see everyone!

I feel like I just finished getting over a cold and got another one.  I guess that's just how it goes, but these colds knock me out, I get so exhausted.  Hopefully I will be feeling better soon and the sun and fresh air will keep me from getting sick again while i'm away.  Here we come sunshine!

Clinical Trial

We had my appointment today with the lead clinical trial GI oncologist at Mass General.  Overall it was really encouraging.  She gave her opinion on the treatment regimen i'm on and said that it is what she would recommend I be on.  Then she had a trial that has started recently that might have an opening soon.  It would not be a type of chemo, it would be taking specific drugs to stop cancer cells from growing.  It is also a trial that is specifically for people who have cancers with KRAS mutations, which I have.  She didn't agree with my current oncologist in regard to waiting until this chemo stops working, she didn't see anything wrong with joining this trial while my chemo is still working if something opens up in a couple of months.

She put my name on the list and I don't want to get too excited but in a few months I could possibly be called to see if I qualify to participate.  There is a screening process that I'd have to pass with a series of tests.  Basically what I got out of this is, I don't necessarily have to be on chemo for the rest of my life, there are other options like this and that is very exciting to me.  Even if it didn't work, there are others out there and it would also mean a break from chemo regardless if it works, and that is very exciting to me!!

on a happier note

I am in the process of booking our hot air balloon ride for our Tucson trip, AND on an even more exciting note, I think the acupuncture that I've been trying is starting to work on my neuropathy!!  I have had 4 acupuncture treatments and haven't had too much success yet but just recently I started to get more feeling in my feet which have been numb on the bottom for just about a year now.  I was told if i didn't notice any improvement by the next treatment that it might not work, so I am very excited!

Feeling much better after an awful week, and I am super excited that I don't have to go back a week from today to get poisoned again!  So excited for my break and to feel good and see my family!

The Green Castle bucket

When I got home monday from boston and getting chemo, I was so nauseas I could barely make it to bed.  Bryan grabbed this bucket from the garage, a green bucket that is used to make sand castles in the summer with the kids.  I brought it upstairs and it is still sitting next to my bed (I can't seem to remember to bring it back in the garage every time I go downstairs).
 
When I was sick monday and was running to the bathroom it upset my daughter.  Daddy explained that my tummy wasn't feeling well and she burst into tears saying, "I know mommy doesn't feel good!"  Then the next day she was asking me why I had a sand castle bucket in my room?  "That doesn't belong there, mom," she said.   No, it doesn't, and so many things in my life right now don't belong where they are.  I don't belong in bed for a week every other week, but thats where I am.  It's so hard to explain these things to a 5 year old.  Bryan met someone at the conference who grew up with both of their parents having cancer, and she thought everyone's parents had cancer, it was just part of her life.  I don't think I want that for Elly, but if it feels normal and it makes things easier than she can believe what she needs to for now. 

I keep staring at that darn green bucket every time I try to rest in my room.  It daunts me, makes me think of being sick and I can't seem to get it out of my head.  This vacation will be such a good break from chemo and life here, we need a change.  There isn't much we can change but we can get out of here for a while and go to arizona and pretend things are normal and be in the sun!

OK time to go put that bucket back where it belongs, put away for to wait for summer!

ugh!

I ended sick to my stomach again last night, beginning to think throwing up on chemo day is not a stomach bug.  I think after being on the regimen for so long, my body is not handling it as well as it used to.  This is very unfortunate because I think since the chemo is working so well we don't have a plan to change it any time soon.

Still not feeling good today, so prayers are welcomed as usual!

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.

living with a secret

Someone told me recently that I could look at my life as though I'm living with a secret.  My chemo so far doesn't make my hair fall out.  I surprisingly do not look as though I'm dying, I look and feel healthy as of now.  I posses the knowledge of my future and those who do not know me, do not.  Walking around the cruise ship and looking at all the happy people on vacation was in a way a daunting experience.  Why do all these people who love buffets and to sit in the sun get to live "forever"?  But I always go back to, who knows what they've been through.  They could have their own diagnosis that they aren't aware of or that they're not visually sharing. 
    One night we were at dinner on the ship and we were sitting right next to a woman who clearly was growing back in her head of hair.  I immediately had this feeling, she has breast cancer.  Sure enough she struck up a conversation with us and it turns out her and her husband were celebrating the end of chemo for her by going on a cruise.  Now I don't ever see me being able to even celebrate that.  I am jealous of my aunts chemo schedule because she can now go every 3 weeks, and I have to go every other week.  How pathetic is that, I'm jealous of a chemo schedule, oh man what a life I now live.
    This woman who was celebrating the end of her chemo was the only person on the boat that we shared my secret with.  She didn't even acknowledge the information with any sort of response what so ever.  I mean, she literally didn't respond, she didn't say anything at all.  I don't know how someone who has been through something so similar as myself can just not even express any sort of understanding, empathic or sympathetic or anything at all.  Telling elicited nothing from this woman.  I know this is how many of you feel.  You don't know what to say or do.  I did a post a while back about this, about how doing something is better than nothing at all.  But then what should that something be?  I don't know that I have the answer to that, and I of all people should be able to give you some hint on that shouldn't I?  I can say that the number one thing that makes me feel heard and understood is compassion, so if you could just show compassion I think that's enough.
    I am not sure what we expected to hear from this woman on the ship, or what we expected her to say that would make us at least feel heard.  I think the fact that she did nothing made me think well she could have at least aknowledged what we said to her.  And I think in general thats what's helpful, is acknowledgement that you understand or at least try to understand what we're going through and again having compassion.
  So as far as secrets go, this is not the one anyone would chose to want to live with, but the word live is the key.  As long as I'm living I will have this secret and that is all I'm trying to do right now is stay alive.

young cancer conference

I got a flyer in the mail from Dana Farber advertising a young cancer conference at the end of March.  It is just a few hours on a Saturday with some interesting looking talks on nutrition and blogging and having cancer as a mom and all the fun stuff that comes with being younger and having cancer.  I am definitely going to go and I'm pretty interested to see what they talk about.  One of the main things was writing and blogging about your experience so I feel I can definitely relate to that one.

I had an increase in a few drugs this past time, non chemo drugs.  We are trying to find a way to make me less miserable the day I get treatment.  I think we had some success but of course all drugs have side effects and I didn't really care for some of the ones I experienced this time that were new.

I keep thinking about the cruise and how blessed we are to be able to have gone.  And how fortunate we were to have my mom watch the kids for us.   My mom went home recently.  I am doing really well and we want to see if we can use friends and family to help with the kids and some how manage without her.  I think it will be a tough adjustment as she was so helpful and supportive but I think it is manageable.  I would love for her to be able to work again and feel like she has a life other than raising her grandchildren.  She is so fabulous at it though!  she is teaching Elly to read and so many other things that I just don't have the energy for most of the time.  I will miss her as she kept me company and was a great help.

Bryan's mom will be coming out to help the next time I get chemo so that will be fun.  The kids miss her and do really well with her.  My brother has also been home but should be coming back soon. 

ok well I will end my rambling, not much to talk about, but feeling really good today, hope you all have a good day!

time heals all wounds

You know that old saying, "time heals all wounds," I have always found that to be so true.  This extra week off of chemo was the perfect time to go on vacation.  Most of my side effects had subsided and it made it so much more enjoyable and that much easier to forget what I'm going through and be able to just live in the caribbean for a week and enjoy myself, ourselves.

Every day was better than the last, it was an amazing trip.  It was like a second honeymoon and we did miss the kids because the ship was so kid friendly, and there were a few families with little ones.  They say you either really like cruising or you don't, and we really do and want to go again WITH the kids!

Thanks to everyone who contributed to the fundraiser because we definitely were able to do more knowing we had those funds to use to help pay for medical bills.  We did a few fun excursions, kayaking and an animal park.  I am going to post a few pics.  Unfortunately my camera stopped working after day 2 so we didn't get as many photos as I would have liked.  We went to one park where they have monkeys that come sit on your heads and birds that sit on your shoulders, I was glad the camera was working for that.  The water was 80 degrees and so was the air, it was beautiful each day and we were so fortunate to have such good weather, no rain and it was so much fun.

We met a few people, no one that we really connected with.  I find it so hard to meet new people, when they ask if I work, I usually just tell them about the job I had and act as if I'm still doing it.  I never feel comfortable dropping the Cancer bomb on them when they're simply just asking what I do for work.  People never know what to say and then it just makes it awkward, so it's easier just to talk about the job I had, which I loved. 

Anyway, it was nice to just pretend for a while that everything is ok and enjoy ourselves.  Thanks to my mom for watching the kids!  and our friends that helped out, we really appreciate it!

 Beach in Costa Maya.  we did some snorkeling there, my favorite picture!

 sunsets from our window on cruise ship

fun rope bridge we had to cross

 orange iguana, they were huge!

 Monkeys!  They warned us to take off our hats, sunglasses and not have big bags or water bottles because the monkeys would just come up and take them from you!  and someone did bring a gatorade bottle and the monkey did steal it, figured out how to open it and chugged it!

When we docked in Tampa we had like 12 hours to kill before our flight.  I have a cousin who I haven't seen in like 9 years that lives in Tampa and he was nice enough to spend the day with us and show us around.  He lives on a lake and I got to go kayaking again!  Thanks Bill for making the end of our vacation awesome!

oh to be 5!

My daughter turns 5 tomorrow.  I had a conversation with her the other day.  I asked her if I went away for a long time if she would remember me.  She said yes and I asked her if she could try to remind Drew of me, incase he forgot and her response was, "yeah just remind me after breakfast."  My counselor told me this was a completely appropriate way to get the answer to a question I've always wanted to ask her.  Her birthday is hard for me, kind of like christmas, just don't know how many more I'll be here for.

Gotta love the 5 year old brain though.  She asked me the other day how you get to heaven after you die.  I can't believe she's asking these types of questions, I don't think I was that inquisitive at this age, but maybe I was.  Being on the other end and having to answer these questions is quite the challenge!

I love to watch movies and I try to find light hearted ones, with happy endings, especially when I'm having a hard time with my life.  I started one the other day and there was someone that was dying in it, and before they even told you what she had I just guessed cancer, cause why not?  That's what everyone is diagnosed with lately, it's crazy.  Anyway, that ruined the idea of me getting through it without crying!  So anyone have suggesstions of newish movies that are funny and heart warming??  Please!

We leave for our cruise on sunday, I hear we are getting yet another snow storm, but hopefully we will miss it.  Bryan and I picked out a few excursions to go on while we're in Belize and Honduras.  I am getting pretty excited.  We haven't ever been on a trip alone without the kids so this is definitely something to look forward to.  I will come back with pictures and stories for you all, just think of us when you're in the snow, out in the caribbean soaking up the sun!

runnin runnin

I have held true with my new years resolution of juicing every day and exercising daily. Well my brother juices a lot for me and so does Bryan so I should give them some credit!   I actually started running again, and it feels great. I am only doing 2 miles and I'm very slow but it is still nice to work up a sweat. I feel so good on my off weeks and so awful on my chemo weeks. I am dreading tomorrow!

I have a drainage scheduled for tomorrow before chemo.  I really don't think they will think there is enough there to drain but it is worth a try.  This is my last treatment I will be getting at the Faulkner center.  They are closing and after this I will have to go to the actual Dana Farber center that is a little bit further into Boston.  This other one allowed us to miss some traffic, too bad they are closing.  I will miss my chemo nurse.  I will continue to see the same Dr. though.

Our cruise is getting closer and we are getting very excited! I am going to talk to the Dr about how often I can skip a week between treatments just for something to look forward to.  It is a little expensive to keep going on cruises although wouldn't that be nice!

I am on chemo indefinitely, so not having a count down or a light at the end of the tunnel is very daunting and depressing.  I am fortunate enough that I have these good days in between but also know that this chemo will not work forever. Eventually the cancer will build up an immunity to it and they will have to try something else that might not leave me feeling so good on the off times.  The Dr said the average for this chemo is a year for it keep working, so I am hoping I can go that long.  I just can't imagine any other type leaving me feeling this good in between.

I need to register my daughter for Kindergarten in the next month and it just blows my mind.  For one, I can't believe shes turning 5 in a week or so and that she's going to be going to kindergarten but also I don't know how long I will be around to see her in school and anything regarding the distant future always puts me in a sad mood of just not knowing.  I always think of how I could just be killed in a car accident and not have this prognosis but just go suddenly with no warning.  I don't know if it's better to have some kind of warning like I have or not.  It certainly makes me appreciate life more and every moment with my kids.  I cherish every minute that I feel good and that I can hold them and that I can spend with my family and I don't think I would have been so present in each moment if I weren't given this prognosis.  Here's looking at the positive right?