Monday, July 14, 2014

Thirty...

On July 11th, I turned thirty. Yup, the big 3-0. Of my close group of friends I'm the last one to hit this big milestone. It kind of snuck up on me. Since our lives became so chaotic with diagnoses, treatments, grief, birth and relapse, birthdays seem to slip down the totem poll of priorities. Plus, Lochlan's first birthday is coming up and that seems way more interesting than my 30th. 

But, being that I have amazing friends whom I've known since elementary and middle school, they took me out and we had a blast! We went bowling - an activity where the worse you are, the more fun you have as it is increasingly evident that you are never going to become a professional bowler, or even manage to get a score past the double digits. We laughed 'til we cried, and stayed out way past my bedtime, and never once questioned each other about where we were "headed" in life. 


Birthdays seem to give you a realization that you are actually older than you were the day before - even if you don't feel like it. I realized that in just 30 years I have experienced things that many people don't see until they are 60 or 70, if at all, in their life. Sure, I have a lot of friends my age who have gotten married, bought a house and had a couple kids. That's pretty par for the course. But it's this damn cancer thing that's pushed me beyond the typical and forced me to face the reality of life and how short it is before most people my age even think about death as a tangible possibility. 

While I'm very sure that the world is going to be stuck with me for quite some time yet (let's face it - I'm too stubborn to let cancer have it's way), loosing a child is something that I'm sure has shaved a few years off the endpoint of my life. The basic stress that it puts on someone mentally just can't be measured. (Well, I'm sure some neuroscientist out there has some theory...) But I think even more than that, it is alienating. Not to everyone, and not completely, but you become an enigma in most circumstances that leaves you wanting for the "normal" encounters that you used to have with the rest of the world. (Enter the AWESOME world of Camp Sunshine! where I'm pretty sure we all wish we could live full time as a commune of like minded "crazies.") Life's little "problems" become petty, and tolerance for ignorance, stupidity, and bullshit becomes pretty much nil. You suddenly become "enlightened" to the fact that the phrase "life sucks, and then you die" is pretty much spot on, and you might as well do things that mater and leave the rest alone. 

So.... At the ripe old age of 30, I have done some things I had always wanted to, some that I never wanted to, and some that I never dreamed I'd do. I've faced challenges while laughing, cried tears while escaping, and managed to get out of bed every day. And while life is far from perfect, and - let's face it - often far from fair, if I'm going to be kicking around for another 30+ years, I better do some things that are pretty amazing while I'm here. 


Friday, June 27, 2014

Trying to make a difference

Aside from starting a non profit foundation, I help Mike with our business, CareAline Products. We see every day how our products, that we designed for Saoirse, help kids and adults around the world live more comfortably with PICC and central lines. We never realized that our little idea would be such and important improvement in the lives of all kinds of patients. We also never realized how hard it is to get a medical product - especially a new idea in the world of medicine - off the ground and into the hands of hospitals. While we have made major headway, and overcome a lot of hurdles, there are still many that we have yet to get over, and I'm sure even some that we haven't encountered! 

WE NEED YOUR HELP! 
Here are two ways that you can help us and help lots of patients all at the same time! 

1) Our Indiegogo Campaign!
We are raising funds to help us overcome some of our current road blocks. We have started a campaign on Indiegogo and you can help us by sharing it with your friends and family and on social media like Facebook and Twitter. Also, please watch the video on our page and consider making a contribution, even if it's "just" $1. (if everyone who saw our campaign donated a dollar, we could help so many people!) 

Just share this link :  http://www.igg.me/at/CareAline 

Thank you for sharing and for all your support! 







2) What is up with medical billing?!?
If you know a lot about medical billing and how codes get reimbursed by hospitals and/or home medical supply companies, we need your help! We are trying to navigate the world of medical billing codes to find ones that will allow hospitals, home care facilities, and PATIENTS get reimbursed so that they don't have to pay out of pocket (mostly if hospitals can bill it out to patients' insurance, they will have them in the hospital so the patients don't have to find them on their own!). If you know billing codes, please consider helping us find the right way to get our products covered by insurance. Contact us at info@carealine.com and we can tell you where we stand so far. 

THANK YOU! 



Monday, June 16, 2014

Off Track....

We have been traveling for the past month. It was a mix of work and pleasure, and a lot of visiting family. (I'll share more about the trip in a few posts over the next week.)

 It was a good trip, but since we have returned, I have been feeling off track. I just feel like we had just started to get a rhythm going before we left, and then the trip threw it all off. Focusing has been hard - with all the laundry to do, things to put away, and exhaustion that comes with being on the road for so long. I think I just need to start in and try and get back into the routine and rhythm and try and get back to "normal" (whatever that is).

I think some of the problem is that I am not seeing as much progress as I would like with my treatment. While things seem to be pretty much stable, I don't feel like there is any improvement in the size of the lymph nodes in my neck. I was hoping that after 2 months on treatment there would at least be some sign that they were starting to go down, and while the other symptoms seem to be stabilized and I do feel more like myself, I'm just disappointed that things are going slowly.

I have a appointment with Dr. Ramakrishnan this week, and oncology appointment next week, and I'll be making sure to get in to do my Tong Ren, and add in some Tui Na. I'm also researching hydrogen peroxide therapy to see if it is something I want to add to my plan and try and kick start my healing a little bit.

More to come on the trip soon, but here is a little sneak peek at some photos....


Sunday, June 1, 2014

Four....

Four year olds have dance recitals. Saoirse would have loved being in a dance recital.

Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.




Sunday, May 11, 2014

Mother's Day...

Family

We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me. 

But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead. 

If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.


Monday, April 28, 2014

Week 3 and Tong Ren

Week 3 went by without major event. Lochlan turned 9 months (I can't believe it), and cut another tooth. Up to 4 now! I went to see my oncologist, and she is happy with where I am. She trusts that I will call her if anything changes. The node in my neck is the same. My night sweats have decreased in frequency and severity, and my weight has remained stable (no gain, but no loss!). These are all good signs (I was loosing half to one pound per week in the 2 months before I started treatment). I'm sleeping well, have more energy, and have been feeling less "out of it." I'm glad that at least I'm sleeping better, as sleep deprivation really wears on me. 

I also decided to attend a Tong Ren healing anti-cancer class in Haverhill this weekend. Tong Ren is an energy based healing derived from eastern medicine theories and the principal of the collective unconscious. It's fascinating, and while I can't explain it myself, I was pleased to attend and hear a true explanation from one of the practitioners. I am excited to continue to learn more about it and attend the classes and experience some of the other healing modalities that are part of the Tom Tam healing system. Tui Na is one that I'm particularly interested in, and hoping to experience before we start traveling in May. 

It's been sort of a tough time recently emotionally. I so much want to be positive and have positive energy in me all the time, but my anger and frustrations take over so easily. I find myself blowing up and loosing my patience quickly. Little things can ruin my morning, afternoon or even my day. It seems to never be anything predictable (other than when Lochlan decides he doesn't want to nap), and it is mostly just a culmination of lots of little things and just one too many to handle. I'm hoping that I can do some acupuncture, Tui Na, yoga and more healing in the next couple weeks. More walking in the fresh spring air should help too. 


Monday, April 21, 2014

Week 2

Second week done. This week was carcinocin. Still no side effects, but definitely starting to feel a bit more energy. It could also be because the weather is finally turning warmer, and the winter is slowly subsiding. I have managed to accomplish a lot o things around the house, which feels really great. Time with friends has definitely helped a lot too! 

I have an oncology appointment this Friday and will be getting a good once over. I will be scheduling scans for June. Hopefully that will have been enough time to see a change and know if the treatment is having an effect.