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?

Thank you! Thank You! Thank you!

So those that came on Saturday, Thank you!  Thank you!  Thank you!  Those that were involved in the planning and executing and everything involved in the amazingness that happened on saturday, Thank you! Thank you! Thank you!  Those that were there in spirit and couldn't make it, Thank you!  My company that put this on, Sea Corp, you are amazing!  I had so many people tell me they wanted to come work at my company after seeing how awesome they are!  We have the term, Sea Corp Family, and it really feels like it.  The amount of support and love that they show, feels like family!

I seriously cannot believe the amount of support and love and in general, people, that showed up on Saturday to show their support.  I have to admit I had to pretend several times during that night that all of you weren't really there for me, that I was just attending an event, otherwise I would have teared up and ended up losing it! 

I have heard that they sold out of tickets, so that means there was at least 500 people that came through the door, craaaaazy!

The food, raffle items, music, everything was amazing.  I hope I was able to get to talk to most of you and say thank you for coming and get a hug or a little chat in, but I know I didn't get to everyone! 


I feel like I can't write a post good enough to express my gratitude and appreciation for everyone and everything.  The local businesses that supported by donating raffle items and food and the Elks club for letting the event take place there, just amazing.  And the bands were all awesome, great music!

So I just wanted to say thanks, and that I'm still smiling and still feeling the energy and Love from Saturday, and I hope I can keep that little warmth of it all burning for a very long time!

--also here are a few photos from the night, my best friend, Kim, and me and my husband Bryan and Me.  I know there was a photographer there and a videographer so when I get a hold of those I will share!

 

vacation!

I did not get drained on Monday.  They took forever to get me into my Dr's apt and then by the time they started chemo I missed my apt for drainage.  I also seem to fluctuate so much, my stomach was down so I didn't feel it necessary to try to get it done.  I had the apt after chemo which is when I feel the sickest.  I made one for next time before chemo so they can at least check and see if there is enough to drain.  This will be nice because we are going on a cruise in February and it will at least make me feel like I can wear a bathing suit!

Bryan booked us a Caribbean cruise!  I am hoping we can use some of the money from the event to help pay for this.  It is so nice to have something to look forward to after I get chemo, it's all I can think about now.  We leave February 9.  I know i can't keep planning vacation after vacation but I hope we can come up with something else to look forward to after this because it is such a good motivator to get through the tough days.

chemo tomorrow

I have been feeling OK.  My stomach continues to give me problems and I have a drainage scheduled for tomorrow after chemo.  My stomach flucuates between being really big and swollen and only being a little big.  I am not sure there will be enough to drain tomorrow but if I feel well enough after the chemo they are going to try.

I have been juicing every day and exercising so I feel like I am doing all I can to fight this.  I am looking forward to seeing everyone on Saturday, I hope you can make it!

Band Together for Leah

Hi Everyone!!

Just a little over a week till we Band Together for Leah!! Hope you’re planning on stopping by!

On behalf of the “BTL committee” I wanted to post a couple things:

-         Need tickets? We have a lot of tickets out there, but not many have SOLD

o       There may be a “distributor” person in your community.

         Are you a ticket distributor? We’d like to collect all money by Monday January 13^th if possible.

o       Call Kevin at 401-324-4117

o       Contact Kim (me): 401-862-4127, kmccarthy1040@gmail.com, or on Facebook through the event page

o       Leah or her family can point you in the right direction

o       Tickets will be on sale at the door. The event probably wont sell out after all, though we’d like to sell as many advanced tickets as possible so we can get a good head count

-         Want to help? We desperately need help with the first 2 items, and GREATLY appreciate it!!

o      Volunteer your time the day of the event

o       Bring food the day of the event

o       Got something to donate for the raffle or silent auction? We're hoping to collect all items by Monday January 13th. Please get in touch using the ways listed above, or mail to:
       Band Together for Leah
       SEA CORP
       62 Johnny Cake Hill Rd
       Middletown, RI 02842

-         What should you expect at the event? (Besides good music and everything that’s advertised on the flyer…)

o       Magnets will be on sale. The cancer warrior stick figure is Leah’s design from her t-shirt. Her neighbor, Celine, added the text along the borders.

o       Wristbands will be on sale. Is your Ploutz Power wristband fading, or is it time for a change, or you just never got one before? You’re in luck with these fancy new versions that say “Band Together for Leah”!

o       Awesome raffle items and silent auction items include sports tickets, timeshares, restaurants, golf, hotels, spa, coffee, gift baskets, etc…. You don’t have to be present to win.

 o       Limited tables and seating available at event

little concerning

I have had some stomach issues and lots of pains lately.  It is weird, I have the pain in my shoulders I had after my surgeries where it feels like air is trapped in my abdominal cavity. I don't know if this is from fluid that is slowly building up or what.  I don't feel like there is enough there to get drained, nor do I want to go through the process, since I have managed to wait so long.  I have been more tired than usual and all these things are making me nervous about the chemo not working as well. 

Please pray for these things and that I'm feeling well enough to enjoy the band together event that I am so looking forwad to!

a new year

The scan wasn't a surprise yesterday, it showed shrinkage of tumors and less fluid.  So as we suspected by how much better I'm doing than before chemo, it is definitely working.  I asked the Dr about taking a vacation with Bryan and what to do if it interferes with treatment and she said we'd do the same we did when I was sick and just postpone it, so now we need to plan our trip!

I try not to read the news but when I do I read these depressing stories of people losing loved ones, not even necessarily to cancer but to car accidents or whatever.  It always puts things in perspective that this is really happening and it happens to others and there is no reason why my situation should be different.  Then I go into the hope survival mode of how I can be the lucky one and that if I can stay alive long enough for the right medicine to come along maybe I can be here to see my children grow up.  It's just hard to believe that I could not be here for that, but something I think about every day.  Every hug or snuggle I get from my kids I cherish and every moment I can spend with Bryan is held in my heart, wishing and hoping there are many more to come.

Christmas was really hard for me, I was in pain and couldn't help but wonder if it would be my last Christmas here.  Let's just hope that everything keeps going positively and that I can try to eat healthier, exercise more and kick this thing, here's to 2014!

chemo monday

Scan was ok, I will get the results on Monday when I get chemo.  I did have good white cell count so chemo is on for Monday.  That's all I got!

scan tomorrow

I have my scan tomorrow.  I am a little anxious because I have been having a kind of new intense pressure/pain near my liver.  I am not sure if anything will show up on the scan but it makes me nervous that this happened while I was on a little break from the chemo. It was so nice to not feel the effects of chemo over christmas but I still have an awful cold.  I will get blood work tomorrow before my scan and I am hoping it shows my white count up so that I am clear for chemo monday otherwise I think they will want to give me the shot that I do not want.  So let's pray on that one.

The project my friend Kim was working on is completed and I have posted a picture below.  What looks like lines all around the edge (if you zoom in) is actually everyones name that submitted it to Kim when she asked for it a while back.  I think it came out awesome and I was excited to hang it on the wall for everyone that comes over to see and search for their name.

early christmas gift

I had been talking about how the Dr had mentioned going on breaks from chemo for special occasions and what better occasion than christmas.  Well that isn't exactly what happened, but close enough!  I went Thursday to get my treatment and my white cell counts weren't high enough.  They decided to delay treatment because of that and decided that since next week is Christmas, that we could delay it another week.  I am fighting another cold and they think that is why my count is down, so let's hope that's it and I don't need to get the nasty shot to boost my cell count next time!

I made it home safely and I am very happy to be with my kids and husband again, it was too long to be gone from them!

I need to be extra careful now about germs and being around sick people since my counts are low, so that is kind of a bummer, but good to know!

Band Together for Leah event

(another post form Leah's friend, Kim)

If you are reading Leah's blog, you have already helped by keeping her in your thoughts and prayers, giving her support in many ways, or just by being a friend. These are priceless ways of helping and we all know how much Leah appreciates them.

Leah's coworkers at SEA Corp wanted to help by having a fundraiser and the concept has gained considerable momentum as more and more people have become involved and lent their input. There are spreadsheets and action items and websites - the organization and dedication of these wonderful people amazes me! And we were able to persuade Leah to let us do this for her. So many people have reached out wanting to do more for Leah and her family, and this is one way of allowing them to do so (and have a fun time doing it!).

Here is the event being planned in Leah's honor.

Saturday, January 18th from 6:00pm - 10:30pm
at The Elk's (141 Pelham St, Newport, RI)

For tickets, please call Kevin at 401-324-4117

Tickets are limited due to venue capacity

Feel free to come and leave anytime during the event. If you participate in the raffle, you don't have to stay till the drawing to see if you've won since there will be space to fill out your contact info on the ticket.

All proceeds will go directly to Leah Ploutz and her family.

The Facebook event page ("Band Together for Leah"): https://www.facebook.com/events/538511059567464/

If you live locally and wish to volunteer your time or you cooking for the event, you can sign up here:

If you have any questions, you can email me, Kim, at kmccarthy1040@gmail.com and I'll try to put you in touch with the right person.

aww shucks I'm stuck

My brother and I checked in and were waiting at the gate in Tucson for our flight when they kept calling up people traveling to cities all near Providence from our connection, Chicago.  They were telling them their flight from Chicago to where they were going was cancelled due to snow storms back East.  We finally went up to ask, "what about Providence?"  "Oh yeah" they said, "there too."  No more flights there until Tuesday!  Well chemo Monday will have to wait I guess.  In the meantime I'm enjoying more time with friends and family and missing my husband and kids like crazy, kind of what my son would call a "Happy/sad" kind of thing. 

Last week I met up with some friends I used to play soccer with in middle school and Highschool. We met for lunch and caught up and of course took a group photo!

Saw an awesome view of the moon last night over the mountains, and only having my phone to take pictures, this is all I have to show for it.

And of course it's gorgeous and sunny here so I am soaking up some extra rays!

There is another storm back home tomorrow, so let's just pray we make it this time!

too windy

My mom and I got up bright and early at 5am and then I got a text from the balloon company at 5:30 that it was too windy to do the balloon ride.  Boohoo!  I hear they have them back home and although it is beautiful out here it would be awesome to see Aquidneck Island from a balloon!  Anyway, no pictures to send today with no balloon ride :(

a bench will do

I went on a hike with my mom and we chose a different trail than last year.  I could not find a good rock to lay on..we even traveled over the river....

 through the desert... and saw a road runner!!  beep beep!

 passing tons of saguaro....

 and past lots of benches with good views...

 and one right in the sun..

It was finally HOT, so no need to lay down to soak in the rays, but I did anyway for a rest.  

sitting by the fire

It seems as though it is finally going to warm up a little toward the end of the week, but it's been in the 30s at night here and that's cold!  I went to a restaurant where you can sit outdoors and since it's been chilly they warm you up as you can see in the photo, kinda cool.

I did get reservations for me and my mom to take a balloon ride on Thursday morning, bright and early, they like to go before sunrise so that will be kinda cool to see.  My friend is letting me borrow her camera so I can take better pictures.

It has been relaxing out here, I went to a vegan restaurant last night that is right next door to an Italian restaurant.  They have an arrangement where you can go next door and order the vegan food and have them serve it to you at the Italian place so you can eat with people who are ordering the Italian food.  I thought that was pretty cool!  And to fit in at the Italian place I ordered a vegan lasagna which was really good!

The sun doesn't seem to be out today, but I when it is I will have to find a rock!  I heard it is snowing back home, so I won't complain!

Tis the season

My mom and I arrived safely in Tucson last night, late, way too late.  I am adjusting to the time change and I am still tired from the trip.  Got to go to Trader Joe's today.  I say "got to" because the one at home is not anywhere near my house and I love going to that store and getting fun organic vegan stuff.  Anyway, just wanted to check in and let everyone know I'm alive and well and I hope to have some fun pictures for everyone this week.  Here is one I took down the street from my mom's house, thought this was so cute and seasonal!

I have had a life long dream of going on a hot air balloon ride, they have them here in the winter and I am looking into it but not sure if I can make it happen, that would be some awesome photos, too bad I forgot my camera!  At least I have my Iphone.

Unfortunately it is supposed to be in the 50s here this week, and rain tomorrow, but I am determined to find some sunshine and a warm rock!