April 2009


**First Things First**

Monday night I went into the ER, again… (you can roll your eyes… I did) with, you guessed it… a fever. As one friend pointed out to me, “This fever thing is really getting old Heather!” I agree with her wholeheartedly. To that end, I saw Dr. Crump this morning at PMH, had some more bloodwork drawn, a CT scan and an appointment scheduled with an Infectious Disease doctor for Monday. I’ll keep you posted. In the meantime, enjoy my original post.

**It’s Just Normal**

This weekend Jeff and I attended the CLL Conference hosted by the Leukemia and Lymphoma Society of Canada. It was a great time and I look forward to “unpacking” some of my thoughts from the conference on this site over the next few days. Today however, I want to tell you about one single conversation that I had on Sunday morning. It was probably, in my opinion, one of the most important conversations that I have had in a long time.

The agenda for Sunday morning was relaxed. We had a private room in the back of the dining area and families were encouraged to meet other families and just talk about some of the issues that are important to them in regards to living with CLL. Some suggested topics included Women with CLL, Who do I tell?, Does my boss/supervisor need to know? My husband was just diagnosed with CLL and he doesn’t want to talk about it. What can I do? I thought that Jeff could have started his own topic: My wife was diagnosed with CLL and she won’t shut up about it…

Jeff and I sat down at a table and I began talking with Tim. Now, Tim was diagnosed around the same time that I was, but more important to me, when he was diagnosed, he had a one and a half  year old daughter at home. And so we talked about what it is like to parent a child while being treated for an incurable illness. We shared a lot of the same fears for our families and the desire to make the most out of each minute spent together, deliberately creating memories that will last.

And then, Jennifer, now 13 came and joined us at the table. I moved over and introduced myself to her and asked what for me, was a difficult question. “What is it like to grow up in a family when your parent has cancer?” I will never forget her answer. “It’s just normal. It’s what I’ve always known.” She went on to say that she would talk to her friends and tell them that her Dad was in the hospital and they would all freak out and her response is always… “it’s just chemo” or “it’s just…”. It’s just normal.

If you’ve been reading along here, you’ll know that I am often wondering about what the effects of all my infections, hospital visits, chemo, doctors etc… will have on Nathan. I’ve already shared some of the stories where Nathan has shown compassion and prayed for God to “heal my body”. (In fact, he’s prayed for many of you and your situations too.) And I’ve shared that it often breaks my heart that he knows so much at this age about hospitals, needles and medicine. But, in that single conversation with Jennifer, my heart could rest easier. Jeff and I often talk about how this is “just normal” for Nathan. He doesn’t know any different. As far as he knows, every kid goes off to the Magic Castle at PMH and every Mom gets sick. I know that at some point, Nathan will have to wrestle with this issue in his own right, but for now, I know that we are doing the right thing and that Nathan will be okay.

I had lots of expectations for this weekend but I certainly never imagined that the most important thing I would take away would come from a 13 year old girl in three small words. It’s just normal.

Thank you Jennifer.

H.

**Nathan Story: Since taking a new medication last week, an angry red rash has appeared on my arms. Here’s the conversation Nathan and I had on Friday.

Nathan: Mommy, what is that on your arm?

Me: It’s my watch.

Nathan: Not that Mommy! What is that? (pointing to my rash)

Me: It’s my rash.

Nathan: Oh. I pray Mommy. God will make it better. (folds hands, bows head) Dear God, And I pray for Mommy’s rash all better. Amen. See Mommy. God is healing your rash.

**It’s just normal.**

As I walked away from the ER early on Monday morning I had the thought… “I could really use a vacation.” Immediately I realized that it wasn’t a vacation that I was looking for but an opportunity, for just a little while, to forget about cancer, infections, chemo, drug reactions, hospitals and fevers… to escape from it all.

And I think that if we are all honest with ourselves, we all have something that we would love to escape from, even for just a short moment in time. Perhaps it is a difficult work environment, a distant relationship, financial worries, caregiving for a partner, family member or friend, the loss of someone special and the grief and loneliness that comes along as a steady reminder of their absence, a shattered dream or hope of what might have been… the list is endless and different for everyone.

As I thought more about this idea of an escape from cancer (and recognizing that in all reality it was an impossibility) I began to search the Bible for some words to bring comfort and peace to my weary heart, mind and soul. I have reflected on these words all day and I believe that they are the echo of my heart.

So rather than an escape, may these ancient words bring comfort and peace to you today.

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.  Psalm 73:26

But then he (the Lord) said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-12 (context: the Apostle Paul pleading with the Lord to take away his thorn in the flesh.)

As always, with Hope and Joy,

H.

That’s right. I spent last night in the ER. Again.

About the time Jeff put Nathan to sleep last night I thought that I might have a fever. I took my temperature and was shocked to see that it was pretty high. In fact it was higher than the night before when I had checked myself into the ER. We weren’t really sure what to do since I had already been treated for the fevers with an antibiotic and the blood cultures wouldn’t be back for another 24 hours. But after monitoring my temperature for a few hours I realized that this fever wasn’t breaking. After a call to PMH and talking with an on call nurse we made the decision for me to go back.

So, that’s where I spent my night. I wasn’t released until 6:00 this morning. I had a chest x-ray and more blood work done. There still isn’t any more news about why I have the fevers. A call was made to Dr. Crump so that he was aware of what had happened over the weekend. Jeff was also able to fax him all of the notes and blood work from yesterday and today.

Since I’ve been home I’ve been resting. My temperature was high again this afternoon but I’m monitoring that closely.

I’m not planning on heading out to the ER tonight so I’m looking forward to a good night sleep in my own bed.

H.

***I guess that I should start by saying that I took my third round of chemo over Easter weekend. As before, the chemo is in pill form and I am able to take the prescription here at home. Let me tell you, there is something strange about taking chemo at home. I’m always reading and re-reading the label to make sure that I’ve got the right dose, double checking everything. And the side effect warnings don’t help either. I mean, this is serious stuff. And, it’s downright strange to have chemo in the kitchen cupboards.

***I was so thankful to be able to participate in Good Friday and Easter Sunday services at our church last week. Jeff and I both commented that this was the first in at least 3 years that I have been able to attend any services. I’ve been too sick each of the past years to attend.

***It was a relatively low key week. The side effects of the chemo that are most worrisome for me are low blood counts, fatigue and risk of infection. Late in the week I could feel a cold coming on so stayed in bed for the morning and it seemed to help. Yesterday though, after spending the day in bed and after Jeff and Nathan had left for the evening I realized that I had a fever. I called a friend to see if she wanted to spend the night in the ER at Ajax/Pickering Hospital with me. And we were off. It was a long night. The waiting room was full. Thankfully, I didn’t have to wait long for a room (short wait times is one of the “benefits” of going to the ER with me). Blood work and blood cultures were taken and the doctor sent me home with an antibiotic. I’m starting to feel better, and by that I mean, I had the energy to come downstairs and write this post but I’m going right back up again to bed when I’m done.

*** One more thing, Jeff and I are scheduled to attend the 2nd Trends in Treating CLL Conference in Niagara Falls sponsored by The Leukemia and Lymphoma Society of Canada. I am eager to meet with other CLLer’s like myself and share our stories.

I feel that this post doesn’t have much “substance” to it. There is so much more that I am learning that I would like to share with you. I look forward to sharing more of my story with you soon.

H.

On Wednesday of last week I attended Look Good, Feel Better, a program offered at PMH. This is a national program sponsored by the makeup and beauty industry (they have a proper name but it has escaped me right now…) and offers women who are undergoing chemotherapy an opportunity to learn about safe make up practices while you have a lowered immune system, practical tips on how to care for your skin and nails and all kinds of make up tips for women who are at a vulnerable place in their lives. The premise of course, is that if you look good, you’ll feel better. At the beginning of the 2 hour session, each woman is given a box filled with cosmetics, cleansers, lotions and potions to use during the session that have been donated for the Look Good, Feel Better program. The program also offers instruction and advice about wigs (both synthetic and human hair), scarves and other types of hair coverings.

As I mentioned, this is a national program and is offered in hospitals all over Canada.  If you are, or know a woman who is going through chemotherapy (or radiation) treatments I would highly recommend this program. Keep in mind that this endorsement comes from me, a woman who wrote the post Why I Don’t Wear Make Up. There is a lot of value in meeting with other women who are going through similar situations. And while the volunteers can’t speak to each individual medical situation, they are able to offer some really practical, general tips for caring for yourself during treatments. Please pass on this information on to anyone you think would enjoy this program. Thanks.

Looking Good and Feeling Better (and promptly crying all my make up off…),

H.

You may be surprised by the events since my last post. I wrote last about having had a lumbar puncture (spinal tap) and that I had received a call from my doctor with the “all clear” on Wednesday afternoon. Imagine my surprise when on Thursday night I began to get a headache that remained untouched by any medication. My only relief came from lying flat on my back.

Now, I’m no stranger to headaches but what took place over the next several days was unlike anything I have ever experienced. I was literally immobilized by the pain. I lay in bed flat on my back all day Friday, all day Saturday and most of Sunday. Every step was calculated. Every unnecessary step was eliminated. After some frantic moments of worry and an email sent out to many of you, I began to realize from others that this headache was a common side effect. I’m not sure how I misunderstood this (although let’s remember that I had just had a needle placed in my back to suck out the spinal fluid and that I really shouldn’t be counted on to remember anything!).  I knew I might get a headache but that, that was no headache. Research online also confirmed that this headache was “normal” or at least to be expected and should last 48 hours or more. My (limited) understanding is that while the body works to replace the spinal fluid that was removed that there is an imbalance of pressure to my head/brain that causes the immobilizing pain.

I try not to spend much time on self pity or complaining and I’m usually good at seeing the good in situations (that’s all that positivity that I was talking about before) but that headache was tough. Admittedly, once I knew that the headache was a common side effect rather than something that was unique to my experience I was able to change my perspective and realize that an end was in sight, creeping closer with each hour. But I’m not going to lie, those few days were the most difficult of the recent past. I am thankful for your prayers during this last week, prayers from those of you who knew what was happening and those who prayed in a general way. God heard all of them and encouraged my heart.

Yesterday I was back at PMH to see Dr. Crump and he was pleased with my blood count results. And so, since I’m healthy enough, I’m going back on chemo this week. I’m just waiting on the order at my pharmacy. I told a friend earlier today that the irony isn’t lost on me that now that I am healthy, it’s time for chemo again.

I must admit to you that today’s been a tough day. I spoke before that cancer is not just a physical battle, but also one that is fought in the arena of the mind and emotions. I think that a combination of the headaches on the weekend, the weather and the weariness of the cancer is wearing me down today.

Before I go, a Nathan story:

**On Friday morning when I came down for breakfast I could hardly hold my head up. I didn’t know what was going on. As Jeff prepared breakfast for us Nathan was asking “Mommy, are you sick?” This question, as you can imagine, breaks my heart because the reality of the past few weeks is that I’ve been sick a lot. Jeff answered Nathan and said, “Mommy’s head hurts. She has a headache.” Nathan’s first response was to look at me and say “Mommy, I pray for you” and with that, he folded his hands and bowed his head and began to pray. “Dear God, please help Mommy’s headache to get better. Amen.” He then looked at me and said, “Mommy, God is healing your body.”

I am so thankful that God is using this experience to make Nathan into a compassionate little boy. At the same time, it breaks my heart that this is part of his “normal” experience. Jeff and I are learning what it means to parent a toddler while also dealing with a chronic illness. We’ve got a lot to learn but we’re up to the challenge.

Love to you all,

H.

Jeff and I have found so many gems in God’s Word over the years that I couldn’t wait to share this one with you. It is a re-post from when we kept a blog years ago about how we all travel together even as we have different life experiences.

Mark 4:35-41  That day when evening came, he (Jesus) said to his disciples, “Let us go over to the other side.” Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?” He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” They were terrified and asked each other, “Who is this? Even the wind and the waves obey him!”

Jesus had been teaching all night and he was ready to get away. “Let’s cross to the other side of the lake” but as they were crossing a fierce storm started. Of course we all know the story, Jesus calms the storm and the disciples are filled with awe and ask each other, “Who is this man, that even the winds and waves obey him?” But there is one little part of this story that Jeff noticed for the first time, vs 36 “There were also other boats with him.” Jesus and the disciples were not travelling alone. Other boats followed. There were other boats in the lake that night during the terrible storm. And the men (and women?) in those boats also experienced the Miracle of the Storm. We have found that many people, families, churches have jumped into their own little boats and are travelling with us. Open your eyes to see the Miracle of the Storm.

  • *It it such a joy for me to share my story with you and to share how God is deeply impacting my life and “calming the storm”. I am humbled that God has chosen to use me in your life, in the lives of my family members and strangers alike. I am just one woman, wholly available to God. I wouldn’t change that for the world. I’ve often said that I have learned too much about God to trade the last 11 years away for perfect health and healing. My prayer is that in the middle of your own storm, that you will find Jesus right there rebuking the wind and the waves and that you will see the other boats in the water, travelling beside you, reminding you that you are never alone.**
  • *Good News: I got a call from Dr. Crump this afternoon and was given the “all clear” on my blood cultures and the lumbar puncture. He is still unsure of why I’m having fevers although it could just be a result of having CLL. Some things happen without human explanation, this seems to be one of those things. I am comforted constantly that God is the One who created me, knows my insides and outs, my DNA and knowing that is better than any test result in the world.**

H.