Kayaking for a cause

The Healing Co-op that I go to is having their annual kayaking fundraiser on June 29 at the Kayak Centre 9 Phillips St. Wickford, RI.  . Registration 8:00-8:30, kayaking 9am-11am.   It is $50 to participate and the money goes toward the co-op, a great cause!!  I will be going with some of my family, please come, the more the merrier!

I went last year and it was a beautiful day, great for paddling and a lot of fun.   If you can't make it and want to donate, email me at leahinnewport@hotmail.com as there is a pledge form for me to raise money for the event as well.   Hope to see you there.  You can register online at http://www.thehealingcoop.org/2014kayakforthecoop.html

Just listening to the birds

My husband was on his way out the door the other day to go for a run.  He came back inside and stated that he had forgotten his headphones.  My 5 year old daughter gave him a puzzled look and simply stated, "you don't want to just listen to the birds?"

I feel like ever since my diagnosis I have stopped to smell the flowers and listen to the birds more than I would have, knowing I probably won't be able to do it much longer.  My mom's birthday is today, and birthdays seem to really be a significant time for me in my life now.  I just never know if I'm going to be around for the next one. 

I did hear back from the nurse and she said that it is an option next time to eliminate the one drug we know is causing the problem.  I feel like I get mixed responses from people when they hear this.  On the one hand I might not be suffering as much from chemo in the future, which is great, but on the other hand we aren't sure that it will be as effective in keeping the cancer away.  So as grateful as I am to not be suffering of course there are always the chance of consequences we don't want to deal with.  It's just not fair, and well I guress I need to get used to that.

It seems like every week we're reading about trials and cures that people have found for their cancer.  I always wonder if some day that will be me, and I pray it will.

Once again I want to thank my mom for all her help, Happy Birthday!! and I don't know what we'd do without her!

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.