Like a solider going to war : Kyle Miller

Like a solider going to war

by Kyle & Vanessa on 11/04/11

Things have been pretty quiet around here, although I've had a good week filled with lots of naps, good food, tonnes of visitors, anti-nausea meds and unfortunately, painkillers.  The effects of the chemotherapy were well managed by the drugs, but I did have one really bad night last Tuesday thanks to our nemesis, Neulasta.  Since this drug stimulates white blood cell production in the bone marrow, it caused lots of aches and pains in my large bones, especially in my back and hips. I was in excruciating pain, but it was  a small price to pay compared to the large benefits this drug provided me with.

Although we were hopeful that the chemo would start to shrink the main tumour in my lung after the first round (tumour is 5.6 cm x 3.4 cm), a CT-scan that Dr. Blackstein ordered on Tuesday showed no changes as of yet.  Dr. Blackstein said he's neutral on the results.  Although it would have been encouraging to see that the tumour was shrinking, he anticipates that the tumours have been there for a long period of time, and therefore wont't disappear as quickly and easily as we would have liked. He decided to add another round of chemotherapy to the treatment plan and mentioned he has a backup plan in his back pocket if first line therapy is unsuccessful.  I have officially been diagnosed with Stage 4 Osteogenic Spindle Cell Sarcoma.

One major change for me this week is that I started to lose my hair.  I woke up Monday morning to what I thought was an exploded pillow; it turned out to be my hair.  I decided to go see my man Daniel Fung to get a shave and got the kind of cut a solider going to war would get... thought I should look the part!

Those of you that have seen me speak know that I set some strange goals in my last conquest. Most evident was to not lose my hair, a goal I set after Dr. Blackstein told me this was a side effect of chemo. I challenged myself to set this goal in response to my brother saying "You will look pretty funny with no hair."  Since of course I did lose my hair then and again now, I have learned to set realistic goals.  Knowing the hair loss was inevitable, this time around, I have been in search for the perfect winter hat for some time now. My quest has taken me from sporting goods to designer and specialty stores to Wal-Mart and even a trip to across the river to Target. We've searched high and low and I've tried on several, was even close to purchasing a few, but can't seem to find one that works. 

I have decided in the few short weeks we have left before snowfall, I will design my own! I have been in the designer mode after Brandon asked me to help design his goalie mask for his upcoming NLL season.  I have a few ideas but would love some input from others if you have any.  I want my hat to serve as a symbol of inspiration for me every day, not something I could find on a store shelf.

I head back into the hospital on Monday for Chemo Round 2 and will be in there until Friday. It may sound strange, but I am looking forward to it; I enjoy the battle. I will continue this fight and stay open to all of Dr. Blackstein's recommendations for treatment. Our trust is 100% with him and his team at the Mt. Sinai Sarcoma Cancer Centre.

Updates to my blog will be coming much more frequently now that we have gotten our routine down. The last three weeks have been a whirl wind and I appreciate all of you for helping make our lives feel 'normal.'

Comments (14)

1. Angela Gurski - Delburne said on 11/4/11 - 11:01AM
You have a truly amazing outlook on life which is such an inspiration to myself and so many others! Thank you for sharing your journey with us. Good luck with the Hat design!! Looking forward to seeing what you come up with. My prayers are with you that you would heal fast and feel strong!!
2. Diane Peacock said on 11/4/11 - 11:12AM
Kyle: You have such a positive outlook and I am very proud to call you friend. I am praying for you every day. Keep up the fight and love the hair cut. You should make the middle part a mohawk before you lose it all.
3. Aunt Kelly said on 11/4/11 - 11:37AM
HMM...Well you sure did get me thinking,,,We will do our best!
4. Valerie Thompson said on 11/4/11 - 11:40AM
Maybe I should pay a visit and bring a sewing machine!!! You need a Blue and Red Maple Leaf for sure!! We should have a hat party, and see what we can come up with, or have a contest for the best design. You could have a whole wardrobe of hats!!! I hope one will compliment your designer Christmas Sweater!!! Lots of Love to you both!!!
5. Deb VanWyck said on 11/4/11 - 11:41AM
Kyle, you have always had the heart and spirit of a a hat that says as much, is what you need to design. I will be thinking of you next week while you face this "battle".
6. Erin Netzle said on 11/4/11 - 02:07PM
Kyle, a true inspiration!! Since we heard this news of your new battle, we've been thinking of you often and updating ourselves through your blog. Your outlook is nothing short of amazing. It seems that in many ways you've already beaten this disease - comtinue your fight with your open mindedness, positvitiy and certainty of overcoming this. Thoughts and prayers are with you!
7. Aunt Karen said on 11/4/11 - 02:37PM
We love a challenge! For sure a Blue and Red Maple Leaf!!
8. da Silva said on 11/4/11 - 07:59PM
Hey Kyle, Niki, Gabe and I are following your journey and our prayers and support are with you each day. You are an inspiration. Keep battling we are in your corner buddy.
9. Martha and your friends at Terry Fox said on 11/5/11 - 07:07PM
Kyle, we think of you every day. You have so many friends and admirers at The Terry Fox Foundation and you are a great inspiration to us all. We know you will look great in any hat design you come up with - perhaps some lacrosse stick shaped ear flaps?! Martha, Kim, Lisa, daisy, Nishi, Bruna, Josie et al.
10. Christian said on 11/6/11 - 01:29PM
Kyle - we heard about your mission to find the perfect hat and we'd like to see if we can help. We're a small toque company based in Canmore, AB and would be happy to get you set up with some toques. That is, of course, if they pass your standards. Send me an email, with your ideal toque description and we'll do our best to make it happen.
11. Ann DeVries said on 11/8/11 - 06:47PM
Kyle and family you are in our thoughts and sending you positive waves to help in your fight. Wishing you well and take care. From all of us in Exeter, who you showed that taking a passion and making goals can make a difference! AIM FOR YOUR GOALS!
12. David Coors said on 11/9/11 - 09:56AM
Kyle. Hey buddy! Leary forwarded your blog onto me. Pease email me ( your shipping address. I have something I want to send you. You're an inspiration. Love and Respect!
13. susan lorenz said on 11/10/11 - 08:23AM
What a fighter. Alisa said it all on her facebook page, we all need to learn "not to sweat the small stuff". You are in our thoughts and prayers. Keep up the fight, we know you can win this battle.
14. Mike Riordan said on 11/14/11 - 12:23AM
Kyle, Keep up the fight, buddy. You are in my thoughts Mike

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