May 2009


Last week I met with Dr. Crump and after talking about the suggestions from the Infectious Disease doctor we decided to put some of those recommendations in place. Currently I am taking a medication three times a week to keep infections away, I’ve had a Pulmonary Functions Test and a second meeting with the ID doctor.

Also, Dr. Crump suggested that we put the chemo on hold for a while to “let the dust settle”. He’s pleased with my blood work at the moment and would like to see the rash on my arms continue to disappear and to clear up whatever infection still lingers. Yesterday the ID doctor was also optimistic about my current situation and suggested just one more visit (after seeing Dr. Crump in June) and then only “as needed”. Sounds like good news to me.

It’s always a balance when I get good news like this. Some of you are already cheering that chemo has been put on hold, and really, that is good news. But the reality is, the chemo is on hold because the doctor’s don’t entirely know why I keep getting sick, have high fevers (glad to report that I haven’t had a fever in probably two weeks),  and what to do about this rash. It’s a bit double edged, if you know what I mean.

And since I’ve mentioned here that fighting cancer is also a mental/emotional battle, I must admit that it is sometimes hard to embrace the good news when I know that there is still an uphill physical battle to be fought. It would be easy, I think,  if I was “just sick” and I could embrace all that being sick means, or if I was “just healthy” and could embrace all that being healthy means. But for now I flip-flop back and forth between healthy days and sick days and I don’t know until I get out of bed which kind of day it will be. Somedays it’s obvious, somedays I choose.

And so, with all this in mind, I’ve decided to put a pause on this blog for a period of time. I’m not sure how long, at least until my next appointment with Dr. Crump at the end of June. Believe me when I tell you that this is a difficult decision for me. I love writing, it is healthy for me and more than that, it is often healing for me. But in light of this “good news/bad news” I really find myself in a place where I need to take some time, in a healthy way, to just live and enjoy each day and not give this cancer the spotlight attention that it has been getting for the last few months. These words from the Bible keep echoing in my mind: “Be still and know that I am God” and I am eager to just rest and listen to what God has to say to me and my family at this time.

I know that I’ve said it before, but it’s worth repeating. Thank you. Thank you for coming back to this site over and over to check in on my journey, my family and what God is doing in our lives. I am humbled and I am overwhelmed. I have learned so much about my own faith journey and my cancer journey. And by sharing my story here, I have learned about your life journeys too. Thank you for trusting me with your stories and for sharing your lives with me.

With joy in my heart,

Heather

I have been enjoying the lyrics from a church song that I learned as a little girl. The title of the song is The Love of God and the words of the third verse are written here for you to enjoy.

Could we with ink the ocean fill,
And were the skies of parchment made,
Were every stalk on earth a quill,
And every man a scribe by trade;
To write the love of God above
Would drain the ocean dry;
Nor could the scroll contain the whole,
Though stretched from sky to sky.

**One more thing, feel free to contact us through this blog under “comments” as we will still get those updates or you can contact us at home by phone or email.

Each year I receive a subscription to Canadian Living magazine from Jeff’s mom for Christmas. I’ve been reading this magazine since I was a little girl at my Grandma Bates’ house. I would curl up in the recliner next to the wood stove in the kitchen and flip through all the old issues that she collected. I’ve always enjoyed the stories, the crafts and the recipes.

In the April 2009 issue, a read a story was titled “My Symbol of Hope”. The author recounted her family history and her own diagnoses with Lymphoma, a related blood cancer to CLL, and how on one discouraging Easter weekend, she found hope in discovering a daffodil growing along the path that symbolized to her hope, courage and strength.

I identified with her story for a number of reasons and so I wrote an email to the magazine.

You can find my letter (!) on page 17 (which, let’s face it… that’s almost like the front page with all that advertising they put in magazines…). And in case you don’t already have the June 2009 issue in your collection, and so you don’t have to run out to get your copy, I’m including my thoughts here for you to enjoy.

Thank you for sharing “My Symbol of Hope” by Michelle Rickaby (April 2009). I was diagnosed with Chronic Lymphocytic Leukemia just over 10 years ago when I was 24, and like Michelle, I have found strength, hope and courage in the symbol of the daffodil. A few years ago I filled my garden with daffodil bulbs in memory of those who have lost their fight with cancer and in honour of those who continue to fight. Even as I write this, my son and I are eagerly watching and waiting for the bulbs to burst into the yellow flower that symbolizes the fight for cancer.

But even when the delicate yellow blooms fade and their flower heads bend low to the ground, I don’t have to look far to find strength, hope and courage. These can be found all year round on the faces of patients and caregivers in the waiting rooms, chemo clinics, transfusion clinics and throughout the hospital, those who bravely fight their battle with cancer every day. And as we share our stories and share our lives, we find the strength, hope and courage to carry on.

Sincerely,
Heather Smyth

**If you want a signed copy… I’m sure that can be arranged! (I’m joking… kinda).

That is what I heard today from the Infectious Disease (ID) doctor at Toronto General Hospital. Good news.

Now, he was making some recommendations to Dr. Crump regarding how to best treat me and the cough and congestion that lingers. He also wants me to follow up with the doctor who performed the bronchoscopy at Mount Sinai Hospital back in February. I’ve got another appointment with the Infectious Disease doctor in 2.5 weeks. So that’s progress.

The ID doctor is suggesting that whatever is hanging around my lungs is not a bacterial infection, but a viral infection and because of my immune compromised cells, it just takes a long time to get healthy again. His recommendations should help to put me on the right track.

So, this is just short tonight. I wanted to give you opportunity to cautiously celebrate with us over the good news and to continue to keep me in your prayers as I move forward.

Love to you,

H.

p.s. We’re back on the pottty training band wagon again. We’re hoping that the box and a half of diaper thats we have at home will be the last ones that we’ll need to buy for during the day time (experienced parents, you can laugh quietly now…). Nathan’s been running around in “waffle underwear” outside in the garden for most of the day. When the timer goes off every 1/2 hour, he sits for two minutes. When the timer is up, he gets a Skittle. If he performs, he gets two. We also have a “potty song” that my Mom sang to me when I was toilet training. If it worked for me, it can work for Nathan!

So much for unpacking my CLL Conference for you over this past week. Believe me, if I could have dragged myself out of bed to write I would have, but whatever fever/infection is hanging around has left me really tired this week.

I mentioned last time that Jeff, Nathan and I went down to PMH on Wednesday to visit Dr. Crump and he’s arranged for me to see an Infectious Disease doctor on Monday at 1:00. I think we are all eager to get to the bottom of these unexplained fevers and the angry rash that appears when new antibiotics are introduced. Let me tell you, no one is thrilled that my immune compromised body is reacting like this to new medications. We don’t think that this is an allergic reaction, but it is most certainly a drug reaction. I should mention that once I stopped taking last week’s prescription of Cipro the “angriness” of the rash has settled down, it is less raised than before and it is certainly going away. That said, there’s still a long way to go.

Okay, let me talk a bit about the weekend. Jeff and I arrived on Friday night and skipped out of a session in favour of a date night on the “strip”. It was so nice to be away and not have to worry about getting back in time to pick up Nathan. Big thanks to our friends for agreeing to a two night sleep over! The weekend would have been more difficult without your help! We LOVE you guys. And, while this has nothing to do with the conference, the bed at the hotel was so comfy it was like sleeping on clouds (although I realize that you can’t really sleep on clouds…)

Meals were included for us during the conference and I will make a shout out to the Sheraton Fallsview for their delicious Brunch in their onsite restaurant A Cut Above Steakhouse. Lunch was served buffet style outside our meeting room and it was good too (can you say Chocolate Cheesecake and Chocolate Mousse… mmm…).

Okay, so you’re probably  more interested in the content of the conference than the food of the conference. We were too. As I mentioned before, I did have some expectations regarding the weekend. I wanted to learn and understand more about CLL from a group of doctors and specialists and I wanted to meet other people like me, people who have CLL, have been treated, have made difficult decisions and have “been there”.

First, the scientific stuff. Whoa. I must admit that my Grade 10 High School Science class did not prepare me for the information that was presented on Saturday. That’s not to say that the day was a waste. There was some information that made sense to me, sparked Jeff and I to talk about some treatment options that we would like to learn more about and was really practical to understand. I am certainly glad though that I had a knitting project with me to keep my hands and my mind busy as all of this technical stuff was going on around me. As a result, I’ve got my newest pair of hand knit socks that will remind me of the conference (and, yes, I know that you can buy socks that are already made up for you at Walmart for pretty cheap. Thanks Dad!)

Second, the social stuff. It’s no surprise that this is the area that was of the most benefit to me. I met two women from Toronto, both who are in the Watch and Wait stage of CLL. What a frustrating (and exciting) place to be! I mean, they have CLL, but it’s to their advantage to DO NOTHING about it. Isn’t that so counter intuitive to everything you’ve ever heard and known about cancer? Yet this is where so many people find themselves when they are first diagnosed. I wasn’t so lucky, but you’ll know by now that when it comes to CLL (and perhaps most things in my life) I walk to the beat of my own drum.

I also met another young couple. Can you imagine my surprise when I met Jeff from D.C. who was diagnosed when he was 28? It was great to sit and talk with him and his wife Jill about some of the issues facing us young CLLer’s. Especially after most of the language of the conference focused on the typical “older generation” that is usually affected by this disease. More on that in another post, but I must admit I was a bit riled up over the obvious exclusion of us young folks. And you won’t be surprised that I made my way up to the microphone during the question and answer period to talk about it. I was careful with my words (I’ve got the bite marks in my tongue to prove it!) and I’m not ready to drop the issue yet. But again, more about that later.

I must be going for tonight, but I do want to leave you with a website if you’re interested. My favourite session of all was by a woman who is the Co-Founder, and Chief Science Writer for CLL Topics, Chaya Venkat. Her message, as a CLL Advocate was nothing short of brilliant. She recently lost her husband to CLL and shares that story here in Harvey’s Journal. It’s not always easy reading. I did skip some of the technical stuff, but she writes honestly about their story, doesn’t sugar coat anything. It is a beautiful tribute to his life and his dedication to CLL Advocacy.

More later.

H.