Thursday, July 30, 2015

Is it gone?

After people ask me, "How are you doing?", the second question they generally ask is "How are your kids doing?" 

Overall, I feel like they are doing fine. They are two different beings who are three years apart in age so they are also dealing with this situation very differently. Little Miss is 8. She was barely 5 the first time and I'm not sure she really understands the significance of what is going on. She also lacks the anxiety her brother has so most times she really seems to be acting like life is as it was just a couple of months ago.

E on the other hand is a bit more nervous. He was 8 the first time and now 11. I don't like to go into too much detail about my kiddos because it's their business and not mine to share. But, I will say he's super insightful and tends to withhold his questions, concerns and anxiety to himself. 

Yesterday he overheard some of our discussion about the reflex returning and some questions started coming. "What does that mean? Is that a good thing?" 
I was very happy he was actually asking the questions.

Today, I went to a quick doctor's appointment and when I got back, he ran to the car to ask, "Is it all gone, Mom?" UGH, another tear trigger for me. My sensitive and scared boy asking if the beast inside my body is gone. "No E, not yet, unfortunately it doesn't happen that fast." But, I'm working on it for sure. That's the plan...kick the beast to the curb!

We are honest with our children, but do not go into too much "adult" detail. Goodness, it's hard for us to process, never mind small children. We have also made sure they have other people they can talk to about this "yuck" and both have been very receptive and done very well with that resource. 

This is a complicated journey for all of us and each of us deals with it differently. Being a parent is tough work. Being a parent with the Big C just adds another layer to the already challenging job.  I wrote my feelings about my kiddos 3 years ago when the intruder entered unannounced. You can read it here.

Truthfully, I would say that my children having to deal with this is by far the thing that is the most stressful for me. It just seems so unfair for them. But, again, in an attempt to find a silver lining, I imagine that this journey will help build character and resilience in my children. They will be stronger, just like the rest of us, for it. I have faith that they really will be just fine!

"Persistence and resilience only come from having been given the chance to work though difficult problems."

Tuesday, July 28, 2015

The climbing has begun...

I started the chemotherapy pills this past Thursday. I was thinking as I looked at the bag that it really needed to be less scary and more motivational, like "You can do this!, Kick the Big C to the curb!.." 
Get rid of the yellow caution label and make it colorful. The bag is so "yuck". 

I posted the photo on Facebook and don't you know one of my friends wrote this:

"If you jumble the letters on the yellow label, you can make the  words-
See ya!

That's what I'm talking about! How great is that? Once again, how can I not be grateful for such a support system. I'm a lucky girl indeed!

Meanwhile I've already had all these ideas in my head with how to go about changing the face of the plastic bags that hold the chemotherapy pills. (Please don't swipe this idea that I'm publicly sharing, that wouldn't be nice:).

So, today makes day 6 of starting the beast killers.  I'm afraid to say it so let me whisper, I'm doing ok and I haven't had much in the area of side effects. Everything has been manageable (I'm knocking on wood, of course).

I also went for a follow-up appointment at the radiation oncologist this morning. We chatted for a while, then he did a quick exam, including checking my reflexes. We were very excited to see that both my knees had reflexes. Why is this so exciting? Well, one of the symptoms that brought me to my oncologist in June was the fact that I was having tingling on my left side, and then I lost feeling in my left knee. When he examined me, I had no reflex. The fact that I had one today means that there are positive results of the radiation I had on my brain...good news for sure! The radiation also continues to work long after the treatment stops, more good news and continued HOPE.

Although it seems like I received the dreaded phone call from my oncologist yesterday, it's really been over a month. Honestly, it's been a bit frustrating and scary to be moving through things at what feels like a snail's pace. When you know you have the Big C throughout your body, you really would like to part with the unwelcome visitor ASAP. By the way I decided I really do like the word "visitor" because it indicates that it will be leaving, maybe not immediately, by eventually. 

So anyway, I feel like I've been  anticipating climbing Mount Everest, but was actually never going to do so. I've been standing at the foot of the mountain, looking up, but never starting the climb. After today's appointment and starting the medication, I finally feel like I've started to climb the mountain, and I'm really looking forward to getting to the top, even if it takes patience and baby steps to get there.

 I'm also very thankful I have so many to climb this mountain right along side me.
Ronnie's Joke of the day:
What kind of horses go out after dark?


"When the sun is shining I can do anything; no mountain is too high, no trouble too difficult to overcome."

Saturday, July 25, 2015

Don't be afraid of my tears...

It's likely that if I see you and I haven't since getting the news of the intruder returning without an invite, I will cry. Heck I will probably cry even if I have seen you. Don't feel bad for me because I cry. It's part of the process. You can still hug me and talk to me and you may even shed a tear or two as well. This is hard stuff, and the tears are real emotions that come along with it

There are so many reasons why I cry. First, I'm still in a bit of disbelief that this is my life, that this is the course I must follow and well sometimes, it's just so overwhelming that the only thing I can seem to do is shed a few tears.

Then I cry that my family and loved ones also have to come along on this journey too. Their unwavering love and support brings me to tears. 

Then I cry because I'm so overwhelmed by the love that I feel from so many. The genuine kindness and caring from literally thousands of people is humbling and brings me to tears.

I may cry when I read inspirational quotes or messages I'm tagged in on Facebook, I may cry when I receive a motivational card (on a daily basis), I may cry when I receive a gift from someone I know or have never even met, I may cry when I get a text from friends and relatives, I may cry when someone sends me a quote on Pinterest, I may cry when I see all the leaps posted, I may cry when I come home from a week away and see that my friends and parents got together to clean-up my yard and make it beautiful. There are so many triggers to my tears these days, but they are mostly good. 

I know I've quoted my grandmother before, but once again her "there's nothing so bad that something good doesn't come out of it", is so very true and fitting in this situation. 

Yes, I seem to have quite the mountain to climb here, but I also have been blessed to have a support system like I've never seen or experienced. The love I have literally felt over the past month is pretty much indescribable. When I was previously diagnosed, I compared the feeling to the movie "It's a Wonderful Life".(You can click on that link to bring you to that previous post) It's still true.

There are people out there in this world facing life's hardships without the blessings I am grateful to have. I try not to lose sight of that even in the moments where it's hard to see the light. The continuous support makes that task much easier. So, thank you once again for pushing this girl forward. 

And just so we're clear, I'm not sitting around bawling my eyes out all day, using up all the tissues in the house, I'm just a bit more sensitive than usual. My tears come more easily than they have in the past. My emotions are raw. 

And now, on a different note, it's my dad's birthday. So, to wrap up this teary-eyed post, I'd like to give a shout out to the best dad a girl could have. I'm a lucky one indeed. I love you dad! Happy happy birthday to you! I love you! xo

"The more you praise and celebrate your life, the more there is in life to celebrate."

Tuesday, July 21, 2015

Focusing on the light...

Here it is Tuesday evening. The meds finally arrived via FedEx today. I will hopefully be starting tomorrow after I have a "deep"(yes that's what they call it) conversation with someone at Dana Farber about the procedure for taking the chemotherapy pills.  I'm not looking forward to this "deep" talk, as I'm not one to enjoy listening to the side effects and such, thus one of the many  reasons I have a crew that comes with me to every appointment. They listen, and I generally remove myself from the situation. It's just all too much for me sometimes. But, I'll be putting my big girl panties on and dealing with it tomorrow (and hopefully stopping them from saying too much so they don't scare the poop out of me).

Meanwhile, we continue on with each day trying to make it as "normal" as possible, even if in between those moments, we are making phone calls, getting multiple blood tests, mailing urine samples for testing, or filling out paperwork. Sorry, probably too much information there, just keeping it real. 

The good news...most of the big, initial tests are complete at this point. And really, the good moments far outweigh the not so good moments on a daily basis, so for that I am grateful. I continue to do my best to literally take one day at a time and move forward. It's hard to see the light sometimes and I have some short moments when I get stuck. Sometimes I need a tap and sometimes I may even need a shove, but I am doing it, with the help of the village supporting me.

As I go to sleep tonight, it is my hope that I take the medicine with little side effects, that it begins its work immediately to tame the beast and and that every day gets a little easier.

It is during our darkest moments that we must focus to see the light.

Sunday, July 19, 2015

Therapeutic distractions...

Although it's pretty much impossible for me to mentally "escape" from the current mountain that is before me, there are some things I do to keep myself busy. Besides puttering around my house, doing the usual stuff, I also like to
 make things... 

...and take pictures.

I wouldn't say I'm actually distracting myself, but I am occupying some of the space in my head where I could potentially make myself bonkers. It's also therapeutic for me to be creative. It helps me actually feel that things really are ok, at least in that moment.

And, although I went off my routine for a few posts, Inspiration #8 is here, along with Ron's Joke of the day.  Enjoy! 

Inspiration #8: The story of a friend who found she had the big C while she was pregnant with her second child. She had a brain tumor and started treatment after her child was born. That was 13 years ago. She is one of the most "glass half full" people I know. I truly feel her positive outlook on life ( Which sometimes made me feel guilty for my own negative thinking ) is the reason for her beating this horrible illness. 

Ron's Joke of the Day
What do you call a pig that excels at karate??

A porkCHOP

"The desire to create is one of the deepest yearnings of the human soul."


There are certain situations where I have an exorbitant amount of patience. 
Waiting to start the medicine to Cage this Beast in my body is not one of those situations. Although there was some time I needed to wait in between the brain radiation and starting the meds, I'm now ready. Starting the new meds definitely creates its own anxiety, however, waiting is certainly stirring more.

I visited both my oncologists this week and was prescribed my oral medication to start the process. Because this is a Big MC treatment, and we have to deal with insurance companies (which I'm so grateful to have) and preauthorizations, things are complicated.  So, here I still wait in anticipation of starting. I'm hoping that will happen by Monday. I did receive a 15 minute infusion on Thursday of some meds to counteract some potential side effects and I'm grateful that all went smoothly (knocking on wood at the moment).

Meanwhile, let me just say how much I LOVE my doctor at Dana Farber. She is basically the perfect match for me. She is so very smart, competent, confident, optimistic and KIND. I liked her the first time we met weeks ago, but now, I LOVE her...for real. 

The phrase I've heard most from people as they continue to shower me with encouragement is "You've Got This!" Sometimes, it's a challenge for me to believe it, but having found a doctor that I can completely trust in her plan to make me well, helps me to truly believe that YES, 

And now, I will practice my patience as we await the next step. Hopefully, I only have to practice until Monday. 
"Patience is the calm acceptance that things can happen in a different order than the one you have in mind."

Wednesday, July 15, 2015

Searching for a reason...

If you're anything like me, you like to find the reason that certain things happen. It's a trait that benefits me in some situations, specifically as a mom and a teacher. It's something innate within me, my natural response. I'm also the type of person constantly reflecting on what I have done and wondering what I can do better.

That being said, my initial response to my current situation, after the tears and profanities, was "How did this happen?, What did I do wrong?" 

It's also become clear that there are other people asking the same thing. I get that completely because I am one who requires a reason for things eases the anxiety and makes things right in the world again.

Unfortunately, this situation, has no clear answers, and I'm quite sure it never will. I have been told by numerous doctors that I did do the right things. I happen to fall into the 15%...I'm pretty sure it's just a number's game, and nothing other than that. 

Let me again set some of the facts straight, not only for everyone else, but for myself too. It helps to reinforce, in my own brain, that I did do all I could have to prevent this nonsense.

-I am now seeing multiple doctors, one of which is in Boston at Dana Farber; they are much more experienced with advanced MC (Metastatic Cancer). On my first visit she confirmed that I did everything I should have to rid myself of the Big C the first time. She would have done nothing different.

-I was vigilant about my diet. I have eaten a low sugar, mostly vegetarian, high antioxidant, organic diet for years. The naturalist doctor I went to gave me an Anti-Cancer Diet and basically, I already followed about 90% of it, but now I'm fine-tuning it even more. Let me also mention that he was "surprised" I was already doing most of what he recommended.

-I walked multiple miles daily, both to relieve stress and stay healthy physically. 

-I paid attention to my body. If something bothered me for more than two weeks, I had it checked out. 

-I alternated between mammograms and chest MRIs every 6 months. My chest MRI in October was clear. 

I know this information can scare the "poop" out of many, because, really, what the heck? I'm still in disbelief. My response is frequently "How did this happen?", but I try my best not to get stuck there because, at this point, what difference does it make? 

I also think, if I was already doing all the right things and this happened, how on Earth can I make it go away? And then, I have my support system setting me straight and rallying behind me. 

And, I'm reminded that there is not just one option, but multiple avenues of HOPE. Of course I'm going to make it go away, because I'm also one who doesn't like to sit back and watch things happen.  This isn't right and it's my job to stop it. I am determined to Cage the Tiger!

Here I am, smack dab in the middle of muck, and now I will get the heck out of it, thankfully because of the treatments available, a support system like no other, prayers and an endless supply of LOVE and support. 

When I have my doubts, I'm quickly reminded by others that I am indeed strong enough to do it. 

"They say everything happens for a reason, the difficult thing is waiting for the reason."