another birthday

I have found it to be very challenging to be in this new situation I have created for myself.  I have had a lot of painful cramping from fluid I guess.  I am constantly wondering if my new drugs are working or not.  I can't really find out for sure until August.  I am hoping that I am not experiencing worse symptoms before August like needing to get drained or something worse.  I have started sleeping in the recliner again.  I had to do this a year ago when I was really sick again and had so much fluid I couldn't lay down.  I have some back/leg pain that I am not sure where it is originating.  Not sure if it has anything to do with the fluid since I also experienced this same pain last year when I had all the fluid.  We are trying to go on vacation in a few weeks so I really hope we can go on our trip as planned.

I constantly go back and forth in my head thinking that what I'm doing is working and I will be cured and I can use my blog to tell everyone all about this new cure and save lives!  Then I get freaked out thinking about my birthday coming up on Tuesday and I keep thinking what if this is my last one?  I always like to make a big deal about birthdays and remember everyones.  I am excited to be celebrating another one and really hope it is not my last.  My sons birthday is also coming up soon, a few days after mine.  I am so grateful that I get to see him turn 3!

Birthdays can be hard for me these days but I am just so grateful to still be here and to be spending time with my kids and getting to see them everyday and watch them learn and grow.  Life is so precious and unfortunately it is crazy things like getting cancer at 32 that really make you appreciate what you have. 


Me and my birthday buddy!

July 14 dr apt

I had my drs apt today.  My tumor markers are good, not elevated at all.  I had an ultra sound done, they saw a little bit of fluid.  I have some cramping from it.  I don't feel as though the fluid means anything.  The method im using requires a slow steady increase of the medication.  I feel like even there is fluid it is just because I don't have enough of the meds in me yet.  Being hopeful anyway.  We have a scan scheduled for Aug 8 and hope to see dr to discuss on aug 11.

I was able to go away on vacation a few weeks ago and I have another one coming up in a few weeks.  I feel like I'm really going to enjoy summer!  So appreciating the sun!!

I am feeling good.  I am still running, and enjoying time with the kids.  Right now my mom, brother and dad are here.  We are enjoying time together and having fun!

side effects

I of course am praying that the alternative method i'm trying will be successful and will make my tumors shrink.  While I am not getting chemo I am thoroughly enjoying not having the following side effects, although there are some that never seemed to go away from last year when I had chemo.  Unfortunately there are so many more, and there are ones that will appear late in life or never go away.

Side Effects from my chemo, avastin and anti-nausea drugs:

bloody noses
headaches
brittle nails splitting and making fingers bleed
fatigue
nausea
vomiting
chills
weight gain
super sensitive gums and teeth
super sensitive to sun exposure
diarrhea
constipation
neuropathy
bladders spams and bladder sensitivity and pain
mouth sores
insomnia
intestinal cramping
hair loss and thinning

I really feel like I am truly able to enjoy life this past week.  I don't have the upcoming doom of my chemo treatment and I don't have to not make plans for a whole week while i'm not feeling well.  I am running and feeling really good, it's so nice to not have at least a few of the side effects from the poison!

Time to try something!

The drs visit actually couldn't have gone any better if you ask me!  She was fully supportive of "taking a break" from chemo and said that its a reasonable decision right now.  We didn't define what a break meant I think we are just going to see how it goes.  I will see her again in month to get tumor markers measured and get examined.  The dr even said that she is trained to work with chemo and that some of the other alternatives have been out there for a while, longer than chemo and that there could be some validity to them.

To top it off the scan showed no growth.  I know what I feel and I feel like I know my body. I am glad about the results but also a little concerned.

We have decided on an alternative method but I don't feel comfortable sharing it on the blog.  As things progress if it does indeed work I am sure I will be happy to share!!
Thanks for all your support, we are so happy the dr is being supportive as well!  My prayers were answered on that one!

the waiting game

So I had my scan today.  I unfortunately in the past few weeks have started to feel my tumors again.  The ones on my sides that prevented me from being able to sleep in a bed for months are starting to hurt again and I can now feel them and they had shrunk so much that I couldn't feel them.  The worst is that I notice it when holding my kids, having them press against my abdomen is painful and it's starting to be painful enough that I can't pick them up.  This makes me sad for so many reasons.

I will call tomorrow to get results although they are horrible at returning phone calls at my drs office so I have a feeling I will just have to wait until my appointment on monday to find out.  The thing is, I know it must show that there is growth, because I can feel the growth!  I am interested in what the Dr will say though.  I wonder if she will think this is from the long break I had when I went to Arizona, I haven't had a scan since then.  I know it's not from eliminating the drug last time because at that point I could already feel the tumors growing.  I am also curious what her suggestions of treatment will be.  There is one other chemo that is the 3rd line of defense (I have already been on the first line and the one i'm on now is the 2nd line)  The 3rd line of defense has an average of working for about 6 weeks, so that is not very promising.

It has been a rough week full of making decisions and dealing with old pains again from my tumors.  Still researching alternative methods.,

Humph

So I certainly felt better without the irinotican but not great.  After my pump came off I was nauseas for days after.  It wAsnt as bad of nausea but still it is awful bein even a little nauseas.  I am not as optimistic about continuing the treatment now.  I am seriously looking into alternative therapies.  I know that after this chemo stops working the only options are clinical trials and I am about done putting chemicals in my body!  I am praying hard on this decision as I have a scan Thursday and depending on the results the decision might be made for me.  I feel like I can't die without having tried everything I can get my hands on and why not start now.   We all know the chemo will never cure me it is just prolonging my life.  I need to find something that is a cure!

better chemo

So the Nurse Practictioner had no problem eliminating the irinotican.  I am a little nauseas but for once I feel like the antinausea medication is working to help with that so that is awesome.  I am also not in bed and was able to eat breafkast out of bed and haven't gone back since I got up!

I hope to continue to feel good, I feel like if I'm doing ok now it won't get worse.  I had a good friend take me to chemo for the first time, my husband was unable to go because of a work meeting.  We actually had some fun, being able to overhear your chemo neighbor can definitely be interesting!  And watching shows with a good friend is not something I get to do often.  Thanks for taking me Celine!  And thanks to our other neighbor Dawn for watching Celine's daughter so that she could take me!  Good neighbors and good friends are what make everything doable!  And of course family, Bryans mom is out to help since my mom went home for a while, so we couldn't do this without Grandma!

chemo tomorrow

I didn't receive chemo yesterday because I had a parent orientation for my daughter going to kindergarten next year.  Because dana farber is so awful and busy they couldn't get me in until wednesday.  So I will hope to be reporting shortly after tomorrow about how good I feel because I didn't get the irinotican!  Let's pray on that one!

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.

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!