I'M ALIVE

I apologize for not keeping up with this blog.

If you are new here, be sure to visit my very first blog post dating back to March of 2014 to learn more about my Ependymoma Tumor.


 I am happy to say my surgery (which took place on July.28'14) was a success, and that I only have a few deficits - mainly numbness in my left leg/foot, soreness in my shoulder and neck, and a funny shock feeling in my left big toe that comes every 30 seconds (so annoying) all due to some minor nerve damage.

Go check out "My Journey with a Spinal Cord Tumor's" Facebook page if you would like to see my post surgery updates . https://www.facebook.com/hope.strength.victory?fref=ts.


HOPE.STRENGTH.VICTORY

-Eileen

Going on Vacation

Today is the last day of school for my kids.
We will be spending the first half of our summer together vacationing and going on many adventures. I will not be blogging or updating any of my social media sites for the next few weeks. I will be back to blogging before my surgery which is on July 28th.

-Eileen

Guest Post

 A health crisis does not only impact the person that it is happening to, it also reaches that person's family and friends. But above all I think the person who is impacted the most is the spouse of the individual( if they have one). 
The news of my tumour has affected my husband just as much, if not more so than  it has affected me. 

When a couple is married they exchanged wedding vows, and one of the phrases in the traditional vow is: "in sickness and in health". When couples exchanged these vows do they actually acknowledge what they are truly saying and committing to? Are they really paying attention to the actual meaning of those words?
When my husband was saying those words to me on our wedding day, little did he know that five years later he would find out that his wife had a tumour and he would have to live up to the "in sickness" part of the promise  he made when stating those vows.
 For the most part he has been very true to those words . . . in the best way that he can be. He has had some downs along the way, but I know it is because this unfortunate situation is out of his control, and for him that is no good, he likes to fix things and this is one thing that he cannot fix. Under these circumstances our marriage has been put to a test. . . 

Metaphorically speaking, I know that once we conquer this mountain in our life together that any future hills we stumble upon  will take very little effort for us to climb. 

A while ago I asked my husband if he wanted to do a guest blog post about how he was  feeling about all this, he was a little hesitant at first but then he agreed to it.
So on behalf of my husband here are his thoughts about the situation that life threw our way. . .

 (Please Note: My husband is not one to swear, and I was going to edit his first line out because I didn't want those of you who don't know him to think that he has a potty mouth, but I left it in because that is how he was feeling).

"F&#K YOU  TUMOUR!

Although the anger is fading as I've accepted my new reality, I still find myself mourning the life I had and the life I thought I would be having moving forward.  It’s taken me a few months to put my selfish thoughts away and really get focused on what Eileen needs now.  Love and support.

Here’s the email I sent to my boss at 11:34am on Thurs Feb 20^th.

Got a call from my wife.  She got her medical results back from her MRI on Monday.  Doctor asked her to come in ASAP and now she’s in a flat panic.  Doctor offices need some customer empathy training.

The next few days  I was living in a blur and did my best to appear strong.  And by appear strong I mean adopt the emotional state of a rock.  Not helpful, but it kept me from breaking down.  It wasn't until my first day back at work that it really hit me.  I was in the office nice and early to catch up on emails and another early rising coworker casually asked “How are you doing?” as he walked by.  How was I doing?  Did he want my honest answer?  I had a total and uncontrollable melt down.  Right in the office.  Luckily it was still early and the office only sparsely populated.  I quickly made my way over to my former boss’ office and asked to speak with him.  Like a true master, he calmed me down while giving me the opportunity to release the built up frustration, anger, disappointment and fear. 

Feeling better, I walked out of the office refreshed and ready to rock.  In hindsight, I still had a way to go to really accept the situation.

As a problem-solving logical thinking stereotypical male, a significant portion of my waking hours was spent trying to plan out our next steps to get Eileen through this.  My initial research phase had me digging into the disease, symptoms, treatment options, existing medical benefits and overall healthy lifestyle changes.  I think focusing on “fixing” something really kept me together during those first few weeks.  I had a mission, a goal, a target and I was on a roll.  If anyone is interested in the treatment plan I put together, please reach out.

The next few weeks had me take a turn for the worse.  I had good days and bad days, but the bad days were really bad.  I found it easier to shut down than to open up.  Counterproductive and I knew it.  Time to call in my parents for assistance ( it was my wife who asked them to leave their beautiful home in Victoria to come for a visit, because she knows that if anyone can bring me up in life, it is them).  They’re the equivalent of the eagles in the JRR Tolkien books.  When things are REALLY bad and you’ve tried everything else, they swoop in to save the day.  Just the thought of them coming out helped pull me out of my hole. 

I can’t remember the exact date that I truly accepted reality and released my past expectations of the future, but it may have been the day spent at Princess Margaret hospital for Eileen’s contrast MRI scans.  Perhaps it was watching the old woman helping her even older husband get checked in for his MRI scan.  Perhaps it was the time I sat alone in the hospital chapel getting back to my meditation practice.  Doesn't matter what the trigger was, but I felt changed. I still have good days and bad days, but lately there have been a lot more good days. Watching my wife take this tumour head on and seeing how many people she is inspiring along the way makes me so proud of her and want to be strong and supportive for her. I am extremely blessed to be married to such a wonderful and selfless person who is more than anyone can ask for in a partner and a mother to our children. 

I’m with you lover.  Bring it on!"

- Keenan




Here are a few pics of Keenan and I exchanging our vows on our wedding day, He is the wind beneath my wings.

Surgery Date is Booked

It's been a few weeks since my last post. I haven't posted because I just haven't felt like blogging anything.
I do however want to update to say that I have my surgery date booked; I will be having my surgery done on July 28th at Toronto Western Hospital.

On Thursday May 15th I had an appointment to see my neurosurgeon to discuss my MRI results. For some reason I didn't feel nervous at all that day, I was glad to finally know what lay ahead for me, and to no longer be stuck in limbo.
My husband and my mother joined me for this appointment. We met and talked with the neurosurgeon for about 45 minutes.
The surgeon recommended that even though there was no tumor growth and that I have little to minimal symptoms that I should still have the surgery sooner than later. He said that some neurosurgeons would use the 'wait and watch' method, and would just continue to send me for MRI's every 3 months until there was some growth; he went on to say that extremely confident surgeons would proactively do the surgery ( tooting his own horn if you will). He said that if  we waited and the tumor grew even by 1/2 a mm then he would have to remove the base of the back of my skull which would make for an even more risky surgery than it already is.
A part of me was wishing that we could just do the wait and watch approach, and that this thing would just stay this size for the rest of my life. But, it will grow, it will grow, and I will need this surgery. So I think it is best to do it now while I am young and healthy. I have so much confidence in my surgeon and I know I am in good hands.

... The truth is, I am terrified, everyone says I am going to be ok, and I like to think that I will be ok, but nobody knows that for sure. Non of us  truthfully knows what my outcome will be, all we can really do is hope and pray. Each and everyone of us can wake up tomorrow and have our lives change forever, though does anyone ever think that? On July 28th I know that my life will be forever changed, how it will change, I do not know, but I do know it will be changed, and change scares me. Yes I will have my tumor removed, which is an amazing thing, but with the consequences of having to learn how to walk again, having constant numbness, and tingling in my hands and legs, or perhaps I will wake up paralyzed, or needing a wheel chair for the rest of my life, or God forbid, I die; no matter what happens, I know that my life is going to change.

 I have been so strong through this whole thing, and I will continue to be strong, but I also need to be weak, and it is okay to be weak, for when you are weak, that is when you are your strongest.
We as human beings take too much for granted, we take life for granted, we go on living life as if there will always be a tomorrow. I am guilty of it, and even though I know my life could very well end on July 28th, I am still guilty of it. Living in the moment is a skill that I think only children have mastered, though all adults were children once, so what happened? I am sure there are many adults that are still capable of living in the moment, but there are many, many more people who do not. I am trying my best to live in the moment, but as a mother and the main home maker it can be hard, there is constantly something on the go, something that needs to be planned, someone who needs something, so I admit even now when my children are fighting or crying or whatever the case may be, I sometimes wish those moments away. I will continue to try harder, and work on savoring every moment ( the good and the bad) I have with my children, husband, family and friends. I have recently realized the things that otherwise would have once bothered me or that I would have worried about in the past, hardly even phase me anymore, it's funny how that happened.

On a few occasion I catch myself thinking about the day of my surgery, I try not to think about it too much, but when it creeps into my head, it is hard to stop. The thought of having to hug and kiss each of my babies good-bye brings me to tears, I know it will be an emotional roller coaster that day- it hurts to think about it. I am so blessed to come from such a big and loving family and I know my children will be in the very best hands during my surgery and my recovery period.

So many people have said to me "please let me know if there is anything I can do", which I am so grateful for, but it puts a lot on me and Keenan to designate what people can do for us. If you would like to do something, please go ahead and offer what help you can, my family and I will accept and appreciate any help that is offered. On that note,  Keenan and I are coming up with a 'Care Calendar' which will include a list of things people can help us with, and or if people want to offer their help with anything ( laundry, meals, cleaning, company, etc.) they can sign up and let us know what they want to do. I will inform everyone once we have the calendar up and running.

The month before my surgery, I will be taking a break from blogging and social media and will be spending every waking moment living life with my family and friends. I will be back a few days before my surgery to keep everyone up to date on my progress.

-Eileen

The Waiting Game

So it has been one week since I had my MRI. I called into the office on Monday like I was told to do, and the Doctor had yet to review my scan.
 "Your scan is on the surgeon's desk, and he will review it as soon as he can" is what the receptionist said to me.
 I did not hear anything on the Monday or the Tuesday, so I called back in on Wednesday. I was then told that the Dr. had been in the operating room for the past two days; I was reassured that my file was on his desk and that I would get a call as soon as my scan was reviewed.... I have yet to receive a call.

The waiting game is no fun at all. If my life were a movie, now would be the perfect time for the film to cut away from me and have a new scene which would just focus in on my file sitting on the surgeons desk, perhaps showing a quick glimps of the report and a picture of the tumor, but no one in the audience would be able to understand medical terms or could tell if the tumor has shrunk (shrank?) or not. But, my life is not a movie, and so we continue to wait.

A few different scenarios play through my head...
 Perhaps the Surgeon  is just really busy and hasn't had time to review my report yet ( which probably is the case, or at least that's what I'm hoping). Or, perhaps he has reviewed my report, is studying it and is trying to come up with the best possible procedure to remove the tumor without doing any harm, and then he will present it to me. Or, he has reviewed it and  it turns out that my tumor is not an ependymoma and is actually an astrocytoma (not good, especially where it is located) and it's inoperable, therefor he doesn't want me to know yet, because not knowing yet is better than knowing, and he doesn't think I need to know this now, especially since mother's day is coming up. I DON'T actually think the latter is the case, but I guess there is a small chance it could be true.

Again, being a mother to four children,who keep me extremely busy, I don't really have time to 'think' too much about what is going on, unless it's at 11pm when I should really be sleeping.

I am not scared to hear the results of my scan; If it turns out the tumor has shrunk, as well as the cysts, and I'll just need to continue to have MRI's for the next few months/years - that's great! If it turns out that I will need the surgery in the next month- bring it on! If it turns out the tumor is inoperable and I have X more years to live- time to get going on that bucket list.

Hopefully I will hear something sooner than later.

Thank you to all of you who have been checking in on my daily with calls, gifts, flowers, cards, messages, and to those of you who are just thinking of me.

I will be sure to update you all once I hear anything from the surgeon's office.

-Eileen

April 24 2014

In the last two weeks I haven't had much to blog about; life with four children is quite busy and usually by the end of the day I'm ready to flop on the couch and relax. I am so glad to have my children to keep me occupied during this waiting game, they keep me so busy that there have been days where the thought of my tumor hasn't even cross my mind. I haven't had any major or new symptoms since finding out about the tumor, in fact, I think some of the remedies that I've been taking just might be helping with any minor symptoms that I do have.

April 24 2014 - it is the day that you will celebrate a loved ones birthday or perhaps your own birthday. It is the day that a new baby will come into this world. It is the day that someone will be diagnosed with cancer. It is the day that someone will lose their life. It is the day that a baby laughs for the first time. It is the day that someone somewhere has major surgery. It is the day where you will continue to take care of someone who is fighting their own battle. It is the day when a complete stranger smiles at you which in turn 'makes your day'. It is the day that your sweet child says "I love you" for the first time. It is the day that some of you will take for granted, you'll wake up, go to work, go to school, take care of your kids, drink a coffee, stress over something silly, get upset at a loved one for reasons that you won't remember in a week from now, by mid-day you'll wish the day was over.  For many of you, April 24 2014, will just be... any. other. day.

April 24 2014 - it is the day that I will go for my contrast MRI. It is the day that I have been waiting two months for and dreading it at the exact same time. It is the day that I will most likely re-live the emotions that I felt when I initially found out about my Spinal Cord Tumor (SCT). It is the day that will determine if I need life altering surgery within the next week, month, six months, or perhaps even year. It is the day I will travel to Princess Margaret Hospital, and at 4:30pm will be put into a  huge machine that looks like this ...

I will have an IV put into me. Once a few images have been taken, I will then have contrast (dye) released into my veins and have some more images done, this will enhance the MRI scan images to give the surgeons a better idea of what my tumor looks like. Like most things medical related the 'contrast' comes with risks and side effects :  

MRI Contrast Side Effects

Though MRI contrast (gadolinium) is safer than the CT contrast, there are still some risks associated with the injection. The most common side effects include:

• Allergic reaction
• Flushing/redness
• Hives
• Blood clots
• Dizziness
• Shortness of breath 

. . . Okay then. 

April 24 2014 : It is the day that I will be grateful that I have supportive friends, family and even complete strangers sending love my way. It is the day that I will be grateful for modern technology. It is the day that I will be thankful that I live in Canada and that we have such an amazing health care system. It is the day that I will be strong for those who are weak. And it is the day that I will take another step on my journey with a SCT. 


On April 28th I will call into my surgeons office. With me on hold, the receptionist will ask the doctor (who will have my scans in front of him) if he needs to see me right away. From there we will discuss what the next steps for me will be.


So on April 24 2014, I ask you to be grateful, be grateful for your health, your home, your happiness, your friends, and your family. Be grateful for April 24th 2014, because for most of you, it will just be. . . any. other. day.


-Eileen

Recognition and Reaching Out

People who have been affected by Spinal Cord Tumors are reaching out to me. I've had  individuals contact me to let me know that I am not alone and that they know exactly what I am going through. They have shared their stories with me and have been giving me tips and advice for pre- and post- surgery. Almost all the stories that were shared with me had some pretty positive outcomes, though these individuals had quite the journey  to get to where they are today.

One of my new SCT friends is Chelsea Taylor Grant. Chelsea took time out of her life to reach out to a stranger ( me) after reading her story. My story "hit home" to her, the emotions that I felt after being diagnosed were pretty much identical to the ones she felt after finding out about her tumor in June of 2013. Chelsea and I have been messaging back and forth, sharing stories, questions, concerns. Sh has let me know what to expect once the surgery is over, and she isn't sugar coating any of it, which I am totally okay with. I'm the type of person that wants to know exactly what I am in for, so that I can prepare for it and know what to expect - in this type of situation I'll pass on any surprises!
 Currently Chelsea is doing amazing with her recovery, she mentioned that her first few weeks weren't easy, she needed to use a walker for a while, she needed assistance in the shower, and to this day she still has some numbness in her extremities.  Chelsea's husband has even offered to extend his hand to my husband as another support system since this journey will probably have just as big of an impact on Keenan (hubby) as it will  on myself.

With Chelsea's permission I am going to share her story with you. Chelsea is such an inspiration, And I pray that I will have a positive outcome like she did.

https://www.youtube.com/watch?v=WWNXu3VUfB8

We have a lot to be thankful for.

-Eileen