A Little Birdie Taught Me....

Nothing that we do is ever easy and it seems as though complications and difficulties tend to follow us like shadows, this last round of chemo has been no different.
The round got off to a late start because on the day that we should have checked into the ward there were no beds available, it wasnt until the following day that we headed to the hospital.
Once there we expected the same routine as always, Either Sarah or Allison (the nurses all seem to be named that) would come in and ask about what medications Nick takes despite having his binder which contains all that info right in her hands and they would gather their tools for access.
"Access" is when they insert a needle that looks like a push pin into the port that was surgically inserted in Nick's chest. This will be hooked up to the IV and that is how the chemo is delivered. That night 3 seasoned nurses all attempted to access Nick but had no luck, the pokes were very painful and after three tries Nick got physically sick and I put an end to the attempts at access - the port was broken.
The nurses had to insert a standard IV into his hand for fluids but you cant do chemo that way because it can damage the veins and cause them to rupture.
X-rays were done and the port seemed "mechanically intact" but it still wasnt working, they had only one explanitation, a blood clot must be lodged in it.
We were told that having the port removed was elective and they would send off the paperwork to have it removed but it could take months.
In order for Nick to get chemo they had to insert something called a picc line into his arm which gets threaded into the main ventricular artery.
Nick was able to start chemo but it was clear that the thought of a blood clot sitting in a non function piece of plastic and rubber in his chest was making him anxious and worried. His fantastic surgeon sensed this and made arrangements to get the port removed during our stay.
Four days... two surgeries...chemo and a lot of upheavel.
While I was there I sat down with the social worker and oncologist and had a really good talk.
We talked about the the risks of relapse and about the possibility of a secondary leukemia because of one of the medications that Nick takes. We also spoke about how Nick has made his wishes clear that should there be a relapse he does not want to do treatment again. It would be the hardest thing that I would ever have to do but I would support his choice. The social worker said that its her role to support those choices as well but she reminded me that right now Nick is speaking from his darkest place, his most painful place, his place which contains the most fear, he is weak both mentally and physically and that I should not necessarily take what he says at this point as his honest and heartfelt truth. She also told us that post treatment for most families is worse then being smack dab in the middle because while there are frequent scans and check ups they arent done weekly and for many it feels as though there is always the possibility that there is some malignancy brewing and growing while we try to move forward. She called it the baby bird syndrome - we need to leave the nest and fly, enjoy the skies and behave like normal birds... outstretching our wings and taking to the air knowing that there is the possibility that our wings may fail and we may fall.
While sitting at home letting my brain wander I found myself watching Nick's parrot named Fruitloop. His wings have been clipped for well over a year and his days of flying are long over but yet he still tries to take to the air .... is he stupid or detemined? Why does he continue to try when the chances of him flying like a normal bird arent good?
After a few attempts at take off he stopped, squatted to the floor and fluffed up his feathers - I waited to see what he would do and for a few moments there was just silence.
I then heard Fruitloop say a sentence that is often said to him when he is upset,
its ok buddy. He then closed his eyes and for a moment I thought I saw sadness but I was mistaken  because he then started to whistle a beautiful little melody which was soon accomanied by wing flapping and hopping.
Fruitloop taught me a lesson ..... If you cant fly, you can always sing and dance!

Relay & Reality

This weekend was the Relay For Life and it was my first time participating. The team that I was on did an amazing job and together we raised almost $5000 for cancer awareness.
I am still processing the experience but it certainly wasn't what I expected it to be. It definitely was a time when I felt true friendship and support and I have never laughed so hard in my entire life but I had been told by multiple people that it was a truly "spiritual" experience and I think I missed that part.
I have to wonder if it was just me or if this particular relay lacked that aspect.
The opening ceremony was moving and a young woman with the same diagnosis as Nick gave a speech. She spoke of her diagnosis, treatment and multiple relapses and at that point I did cry because I know that remission doesn't mean a life that's cancer free and that thought sits like a lump in my throat. The fact is that in 20%-35% of cases the cancer returns and I need to find a way to live with that knowledge and continue to raise Nick as normal as possible. I need to try and ignore the fact that at any point in time we could be back in this situation again - how terrified Nick must be, what a thought to live with.
My Wondermom friends were great, I never felt that I needed to be strong out of fear of upsetting one of them and during the two times that I did shed some tears they simply silently passed me a tissue or gave me a hug.
I waited all night for some sort of epiphany to occur, to be so overwhelmed with emotion that I would be breathless but that never came, here I was surrounded by survivors, those still in battle and the people that love them and yet I felt next to nothing for the most part - I have to wonder if I'm broken.
Instead together with my friends we joked, played games, ate junk, laughed and walked for hours.
Next year I will participate again, having no expectations about what the night may hold, letting the emotion come to me or remain at arms length.
I waited for God to speak to me that night and I was angry and disappointed that he didn't. I think back to the girl speaking during opening ceremonies, through her tears she said that her stage III Hodgkin's diagnosis and everything that went along with it was a chapter in her book of life but it wasn't her whole story, after the cheers and clapping subsided my friend and teammate turned to me and sweetly said and she's still here to tell it.
Maybe I was wrong and God did speak to me that night but instead of shouting and loudly proclaiming his presence he instead decided to quietly whisper though the voice of a loving friend.

Cause Cancer Isn't Enough

Our bodies are amazing things and they are capable of many miraculous things but eventually they become tired, especially when they were over run with rapidly dividing cancer cells and then are pumped full of poisons.

Chemotherapy isnt pleasant, it leaves Nick sick, tired, dehydrated and sore and some days I wonder if the treatment isnt worse then the disease. Today at clinic we were given Nick's blood counts and it shows that he will soon likely need a blood transfusion. If the hemoglobin level drops below 80 then they generally transfuse, Nick's came in at 79.
Nick also now has something called peripheral neuropathy which is often caused by one of the types of chemo medications that he takes. Peripheral Neuropathy is nerve damage to the nervous system which delivers messages from the brain to the spinal cord. What is happening at the moment is that the brain is sending messages to the central nervous system saying that the tips of Nick's fingers are numb and the bottoms of his feet are burning. He will be seeing an occupational therapist next week because at its worst PN can make gross and fine motor skills difficult.
Nothing about this is easy, one thinks that hearing the sentence "your child has cancer" is the worst part of the process but its not, there is all the other crap that goes along with it that makes it worse then initially imagined.
Nick has said that he feels as though the chemo is slowly killing him inside and that is hard as a mom to hear, especially when its said from the sore mouth of your weak looking child.
One day there will be a cure, One day another child wont be put through all of this and there wont be a need for all of the torture that cancer treatment is. One day a mom wont have to sit by the wayside and watch helplessly as their child loses everything that shaped their personality leaving them virtually an empty sickly shell of the child that they once were.
One day it wont be a common occurrence to be woken in the middle of the night by the sounds of your child getting sick or have to plan your day around when your child needs to take pills by the handful and painful shots.
One day the only bald heads that will be seen will sit atop the necks of old men and jewelry made of wooden bravery beads wont be more meaningful then diamonds.
All we can hope for is One day..........................

To Sleep Perchance To Dream

As long as I can remember I have had an ability that I consider kinda special, its certainly not even remotely close to any psychic ability but it at times it has been kinda strange - I dream of things that often seem to have cryptic messages and often involve family members who have passed away.
I recently had a dream about eating raw chicken and then spitting it out, it felt so real that I woke up feeling sick to my stomach, after a little research I learned that dreaming of eating raw poultry represents "ingesting or swallowing a sickness or illness" but the fact that I spat it out represented my "unwillingness to accept the sickness or illness".
Another strange one happened a few weeks ago, I dreamed of my Grandma however she was talking through my Grandpa like some ventriloquist act, she was telling me that it would be ok and was pointing to a map of texas. Less then two weeks later my Grandpa died and he will now not be accompanying us on Nick's make a wish trip to texas.
Over the last few weeks I have been trying to process this new life of mine, and I am doing my best to not focus on all of the negative things that have happened but that is hard to do at times.
We have ordered a dumpster and are doing a major spring cleaning as well as landscaping the yard and adding a swimming pool and hot tub. I also think that I am going to invest in a decent Christmas tree since that holiday will now be celebrated here instead of at my Grandparents home. I am trying to reconnect with me and embrace this new existence, it will take time but I'm sure that it will happen.
Today is the tenth day in a row that Nick has been so sick that he has only been able to get out of bed for a few short hours at a time and I am ANGRY!
I am mad that my child is so sick and I'm disappointed that even the most potent and creative cocktail of multiple anti-nausea medication cant seem to settle his stomach.
My marriage has really proved what its made of, we have banded together and my husband has made me so proud of him. I was worried that since his mother passed away of cancer he would bury his head in the sand like an ostrich and leave me to fend for myself but surprisingly enough he hasnt.
We had a nice long chat the other day about what our future holds and he surprised me with his thoughts. Over all of our years trying to get pregnant I have been the ultra motivated one and he has been supportive but I knew that he was that way for my benefit.... he would have been ok emotionally if I'd given up years ago. We discussed how our plans to try IVF again have been put on an indefinate hold because of my fear about the cancer returning and about how maybe I just needed to be finished with that part of my life and move on but to my astonishment he said that he wants to try again at some point. I decided not to even think about ivf or anymore babies but that night during a dream my grandma paid me a visit, I told her about how I was born to be a mom and my heart isnt ready to be done but my fear tells me that I need to be, that my anxiety is in the drivers seat and even though I have no intentions of trying again any time in the near future I dont know if I should even ever try again; calmly she said "in the quiet you will know, he will tell you".
The following day the hospital was a zoo and blood work that generally takes 10 minutes took over two hours. The hallway was like a can of sardines and the echo of voices was deafening. Suddenly there was silence and for a moment everyone was quiet.... it was so strange that I lifted my head to see why there was no sound. Just as I did that I felt a squish around my shoulder, who was hugging me???
It was none other then my fertility doctor of over ten years. We've missed you at the office he said but I've got a feeling that you'll be back.
Maybe one day if life allows it I responded .... Maybe one day.

This I am Today; That I Will Be Tomorrow

Up to a point a man's life is shaped by environment, heredity, and movements and changes in the world about him.  Then there comes a time when it lies within his grasp to shape the clay of his life into the sort of thing he wishes to be.  Only the weak blame parents, their race, their times, lack of good fortune, or the quirks of fate.  Everyone has it within his power to say, "This I am today; that I will be tomorrow."  ~Louis L'Amour

I seem to have stumbled upon a little road block within myself and I dont know how to manover around it.
I have always found my identity in what I am or who I am to others; I am Donna's daughter, Dom's wife, the mom of Nick, Kurt, Riddick and Max, I am an ivf vet, an adoptive mom, a sister, neice, friend .... and the list goes on and on. The one identity that is missing is Cassandra.
I will be completely honest, I have no idea about myself on a personal level.
I have no idea what my passion is or what I want out of my life.
I thought I did, I thought that I knew who I was but I have realized that nothing could be further from the truth.
When life settles who will I be? My choices have been made for me... In two short years all of my children will be school aged and gone all day, there will be (fingers crossed) few cancer follow ups, and only yearly developmental checks. What do I do with myself then?
There will be no more babies no matter how much my heart may break for them and my children continue to age no matter how much I urge them to stop.
My grandparents home where I escape to multiple times a year will soon be sold and then my my northern roots will cease to grow. I will attempt to continue to provide my children with small town values and morals and seek out another slower paced location to become by second home.
Perhaps I am feeling lost because everything is changing so quickly, just as I digest one pill another handful is thrust in my face... perhaps I have reached an unhealthy level.
A recent study found that the secret to happiness is the ability to be greatful but I have my doubts. I am immensely greatful for what I have, and I thank God and my lucky stars every single solitary day but yet there is still something missing and for the life of me I dont know what it is.
I struggle with finding my sense of style, balancing obligations and time for myself but even if I did get that free time what in the world would I do with it?
I have no desire to pack my bag and ran away from home as crazy as it can be here at times but I need to sort some stuff out.
I am almost 30 and I'm a stranger to myself, no clue about the basic concepts that shape me or even the superficial things that make me .... do I like my hair long or short, what is my style .... I have no friggen idea! 
The worst part is that I dont even know how to go about gaining an idea in the first place.
I have to have purpose and passion right? Everyone else in the world seems to have it.
Maybe one day soon either God or my lucky stars will direct me to the alternate route around this road block and I will be reunited with this elusive Cassandra.

Taking A Moment To Smile

Life hasnt been easy over the last six weeks and I guess the saying is true that when it rains it pours.
We all have been doing our best to get through each crisis as it comes but I will admit that things seem almost robotic for me. My days blur into each other and if I didnt frequently look at the calander I wouldnt even know what day it was. My life is changing and I don't know how I feel about it but that is for a future blog entry.
My Aunt Bonnie has completed the three surgeries that she required to fix the injuries that she got in the accident and while she still has a very long and painful road ahead of her at least the healing can now begin.
Today I also got some good news about Nick. His scan results have come back and he is being classed as a "rapid responder".
The tests show that there are no new cancer cells present and his tumors have shrunk by 60%!
This is still only the beginning stages of treatment, he still has the second half of chemo to complete, possibly radiation and then very frequent follow up with oncology to watch for recurrence but for the moment he is kicking cancers butt just as I knew he would and for that reason alone, today I am going to smile!

Comforting Lies

There is a particular sentence that I have told myself often that will now no longer be part of my vocabulary.
Back in November the future was looking promising and two blue lines on a home pregnancy test made me smile. I waited for the fertility clinic to call me with my beta numbers and I was certain that both embryos transferred during our FET cycle stuck because I got positive results on my tests so early. I was shocked when the clinic called and told me that despite my home tests, my blood levels showed that it was not going to be a viable pregnancy. I was heart broken but told myself that things couldn't get any worse.
Then in March when Nick was diagnosed with cancer, I was devastated and momentarily allowed fear to grasp me but I pulled myself together and again told myself that we had entered a dark place but things couldn't get any worse.
As always my family pulled together and knowing how uncomfortable I am leaving the boys with a babysitter my Aunt Bonnie offered to come from northern Ontario every 3 weeks to stay with them while I am in the hospital with Nick ... as always my Grandpa tags along.
Nick finished his second round of chemo this past Friday and then on Sunday before dawn Grandpa and Bonnie did their usual quick get away. This was how it was normally done because it avoided the tearful and drama filled good-bye from the boys and it allowed them to end their seven hour commute and get home by lunch time.
Had I known the day would end the way it did I would have gotten up to say good-bye.
As I sat eating left over chinese food my cell phone rang, it was another of my aunts calling.
I knew ... I just knew but I sat quietly and listened... Cass there was an accident, Grandpa didn't make it and Bonnie is hurt and in the ICU.
I tried to use my go-to comfort statement but the words just wouldnt come - I knew they were a lie.
No matter what happens it CAN get worse and the days can get darker and scarier, its sad but its the truth.
I always thought that God would never give me more then my shoulders could bear but I was wrong, perhaps though its not about carrying the entire load but figuring out how to carry, push, pull, drag, and kick it while still knowing that no matter how bleak the current situation is there is a purpose for the load and it will eventually one day all make sense.
Maybe its about being willing to carry the load vs carrying it all without dropping anything.
I am doing my best to balance two boys with special needs, a hearing impaired toddler, a teenager with cancer, my aunt being very injured and in the ICU hundreds of miles away and the tragic loss of my grandpa...
Our family is strong and we pull together in times of crisis, it doesnt change what happens but it does make the load a bit lighter when there are others to help carry it.