Chemo reduction

So the dr decreased my dosage by 20% of the one drugs we think is causing the problem (irinotican) This did not help at all.  The patch for motion sickness basically gave me dizziness and blurred vision to the point where it is difficult to walk.

It sounded like she could reduce more next time but also they can eliminate the whole drug.  I want to try eliminating it because I just don't think lowering will do anything.

I have a scan scheduled for June 12.  This will probably be too early to tell if its still effective without the irinotican.

The dr wasn't against doing the trial either.  I'd like to see if we can do without irinotican and still keep the tumors from growing before switching to trial.

More on clinical trial

It was helpful to meet with the clinical trial oncologist today.  It sounds like if I really wanted to and I qualified I could possibly get started on it in 6 weeks or so.  It of course has its own side effects (which are not all known, that's part of the  point of the phase 1 trial is to document side effects).  If they can't get my symptoms under control from chemo this sounds like a good option.  This dr said that since I'm on the full strength chemo, they should reduce the dosage to see if that helps.  I am definitely going to request the reduction on Monday.

The dr is hopeful about the trial but since it has its own side effects and of course we don't know if it will work, it seems to make sense to stick with trying to make the chemo mnageable.  I have my off week where I feel pretty good so I could lose that on the trial and possibly feel crummy a lot of the time.  Although she did mention that nausea and vomiting were not symptoms she expects me to experience on the trial.

So I guess we will see how next week goes and I will be in touch with her to tell her if I want to do it as soon as possible or just keep my name on the List for when my chemo stops working or becomes unmanageable.  Also the longer the trial goes on the higher the dosage of the drugs so it might be better to wait until the dosage is higher to have it be more effective.

Doing much better

I have had a decent week and I am not looking forward to the next.  I have talked back and forth with one of the chemo nurses and there really is only one thing they can offer me to help with nausea that they haven't tried.  It is a motion sickness patch.  My nausea is triggered by movement so this was their one idea.  I don't hold a lot of faith in it and if this doesn't work, aside from reducing the chemo I am not sure what the next plan is.
  I meet with the clinical trial dr tomorrow so maybe there will be some promising news from that visit.  I will let you know!

Never say worst chemo ever

I remember a post a while back I called it the worst chemo ever but now I feel as though I have topped that. I continue to get very sick progressively with each treatment and Monday was no different.  I need to call the dr to discuss my options because I don't feel as though I can go through this again in a week.
  I have an apt with the trial specialist next Friday but not sure where we will be after that.  Please keep prayin as I feel awful and I am very scared about the future and what the drs can do to help me.  We tried a different method of antinausea drugs this last time with no improvement and there really aren't any other options out there.

awesome trip

We arrived home safely and had an awesome time in Tucson.  The weather was perfect, I was outside with the kids every day and we came back to rain and cooler weather!  My mom's friend was gracious enough to offer us her timeshare so the kids slept great having their own room and own beds.  The place also had a pool and Elly was in every day, getting closer and closer to swimming on her own!  We were able to go to the desert museum and see the animals and spend lots of time with family!  Thanks everyone for prayers for safe travel and for me feeling so good the whole time. 
  I get chemo again on Monday and I am not looking forward to it.  I am going to have a discussion with the dr about how to manage my symptoms and try to avoid getting so sick.  Then in a few weeks I have another appointment with the dr doing the clinical trial, to ask more questions and find out more about it.

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.