July 2009


Well, it’s been a few days since I’ve had chemo so I’ve had some time to rest and to reflect.

The chemo that I am on is called C.H.O.P. and each letter stands for a different chemical in my particular chemo cocktail (remember that chemotherapy is “chemical therapy”). Each chemo is different and has different purposes in my body. I won’t pretend to understand it all. I don’t even want to understand it all.

We arrived at PMH in good time to drop Nathan off at The Magic Castle and for my appointment. I was assigned a nurse who was so kind and caring for me the whole time, even though she was so busy with other patients on the Chemo Daycare floor. I am thankful for the extra time that she took to care for Jeff and I as we prepared for the first round of this CHOP regimen.

The IV was set up in the vein in my right elbow since, in the words of my nurse, it was “nice and juicy”. The IV infusion lasted about 2 hours total, starting with an anti-nausea drip, followed by an injection through my IV (not on the pump, but in a large syringe that she needed to inject by hand, lasting about 15 minutes), followed by two more of the chemo mix. The last part of my chemo mix is taken by pill. I take these for 5 days, finishing up tomorrow.

The side effects of this chemo cocktail include fatigue, risk of infection, low blood counts, hair loss (more on this in another post), mouth sores, nausea… So far, so good. When we were given the list of side effects to take home, I wasn’t sure how I would feel, and well, I’m feeling better than I thought I would.

***

I asked Jeff on the way to the hospital what he was feeling and his answer has provided me with the best picture and an accurate understanding of my own feelings as we travel down this new path. He said, first of all, he knows God’s peace. You know, that peace that I’ve mentioned here before, “and the peace of God, which transcends all understanding, will guard your heart and mind in Christ Jesus” (Philippians 4:7). Jeff said, that if he was to scrape off or dig under the feelings of peace that there are other emotions that are there (you can imagine them for yourself), but that the primary emotion or feeling was God’s peace.

And isn’t that the whole point of God’s peace?  The peace is there to act as a barrier, as a filter, as a protection from the negative emotions that fight for space in our minds, that shout fears into our hearts and tell us to give up and that all is lost.

You can be assured that today, we are being upheld by God’s peace. We are surrounded by God’s peace, by an underlying understanding of God’s care and protection for us. I can’t describe it for you, but I hope, sincerely hope that you will know this deep peace in your lives too as you travel on your paths.

Love to you all,

Heather

This is just going to be a quick note. I wanted to write earlier but I was busy with some family fun and house activities. That’s the good news, that I had energy to play with my family and do some work around the house.

Bottom line: Yesterday went well (details to follow in another post) and today was a great day. I can’t answer for tomorrow because I’m not there yet. I’m tired, but I usually get tired around this time. Tonight I’m going to listen to that tiredness and tuck myself into bed. I just didn’t want you to think that my absence here meant that I was feeling worse than I am.

I know that everyone has their own ideas about cancer and chemotherapy based on their own knowledge and experiences. And I know that based on knowledge and experiences some of you may have questions about my particular cancer, chemotherapy treatment and side effects. I would be happy to answer any questions that you may have. My cancer story is an open book… let’s face it, it’s on the internet for anyone to read. There are no stupid questions, or at least, after 11 years, no stupid questions that I haven’t heard. Leave your questions in the comment section, send me an email or talk to me face to face.

Off to bed. Joyfully.

H.

Tomorrow is Day One. My first chemo treatment in preparation for the bmt.

I’m feeling rather small today as I look forward to all that is in front of me and I am reminded of the story of David and Goliath.

David was the little guy. Goliath was over 9 feet tall. When Goliath would come out and call to the Israel army, “they all ran from him in great fear. ” Then one day David shows up in the camp and hears Goliath’s battle cry. He approaches the king and after much discussion, David says, “The Lord who rescued me from the claws of the lion and the bear will rescue me from this Philistine!”

So David goes out to meet with Goliath. He must think that David is some kind of joke because he calls out, “Am I a dog, that you come at me with a stick?” And he cursed David by the names of his gods. “Come over here, and I’ll give your flesh to the birds and wild animals!”

Unwavering, David answers,“You come to me with sword, spear, and javelin, but I come to you in the name of the Lord of Heaven’s Armies—the God of the armies of Israel, whom you have defied.  Today the Lord will conquer you, and I will kill you and cut off your head. And then I will give the dead bodies of your men to the birds and wild animals, and the whole world will know that there is a God in Israel! And everyone assembled here will know that the Lord rescues his people, but not with sword and spear. This is the Lord’s battle, and he will give you to us!”

Well, you know how the story ends. David picks up some smooth stones from the river, puts four of them into his pouch and one goes into his sling. He’s got good aim because Goliath gets it right in the forehead and he falls face first to the ground. God uses David to triumph over the Philistines that day.

I want to be careful not to use this story as a metaphor for me (David) and my battle against cancer (Goliath). The part of the story I love the best is that David knows that his own strength, courage and willingness isn’t enough. His confidence comes from the LORD of Heaven’s Armies-the God of the armies of Israel. That’s where my confidence rests tonight too.

With a heart full of thanksgiving,

H.

**Nathan’s been singing this song around the house lately. I think he’s on to something…

My God is so BIG!

So STRONG and so MIGHTY!

There’s nothing my God cannot do!

The Schedule: Yesterday we travelled downtown to PMH to visit with Dr. Crump. After a quick physical it was determined that I am “lumpy and bumpy”, referring to my swollen glands and the angry red rash on my arms and legs. Just how every young woman wants to be described, eh?

Next Monday I am scheduled to go downtown to see Dr. Crump again and then my first chemo appointment is set for Tuesday in Chemo Daycare at PMH. My understanding is that the chemo will be administered by IV on a three week schedule. This can change based on my blood counts prior to my chemo appointments to ensure that I am “healthy” enough to receive the treatment. Based on our conversation with Dr. Crump yesterday, it sounds like I will receive this chemo for 3 rounds.

**Edit** My first chemo appointment is scheduled for Tuesday, July 28th. Then I will be off for three weeks. My following chemo appointment is scheduled for Wednesday, August 19th. Off again for three weeks. Waiting for more appointments. (Sorry for the confusion. I can’t even blame it on chemo brain yet!)

The Rash: As I mentioned, my rash is back. Truth be told, it’s never really gone away. The rash is mostly on my lower legs, upper arms and my neck. It seems to be sun related or drug related, but since I haven’t been given any new medications and I’ve been pretty careful to stay out of the sun, we just don’t  know anymore. It really has Dr. Crump (and all the other guys I’ve seen) baffled. We don’t know the cause or even how to treat it. It’s not usually itchy, although it’s always ugly, but when it does flare up again, it is raised and bright pink or red. Yesterday and today my legs have been itchy enough I could scratch them all day, with no relief.

So, that’s it. That’s what I know. There are still lots of questions, of course. We’re writing them down for my next meeting with Dr. Crump.

Jeff and I are also taking an honest look at what we anticipate to be some of our needs over the next few weeks and months. We are working together with some  friends to put a plan in place for those who would like to help out in some practical, tangible ways.

Love H.

**I’ve been fighting with the computer since Friday to add the “links” to the websites mentioned below. I’m admitting defeat. I’m sending this out anyways so that you can have the information but you’ll have to do the work yourself to find the sites.**

**Also, if you are interested in receiving regular updates when I post on the blog, there is a section on the right side of the page where you can “Subscribe”. After adding your information, you will be sent updates to your email notifying you that a new post has been added.**

First off, thank you for the outpouring of love that has been shared with our family as we have been in the process of making the decision to move forward with a bone marrow transplant (bmt). We know that we are surrounded by family and friends who love and care for us. This is so important as I/we move through the next stages of my chemotherapy and bmt. We knew that you all loved us, but I’m not sure we knew that you LOVED us. We LOVE you in return and thank God for you.

So, some questions have come up since I first posted about our decision to move forward with a bmt. I’d like to point you in the right direction to get some good information about what is involved in a bmt and how you can become a bmt donor.

Blood Donation: You’ve already heard me talk about the importance of donating blood on a regular basis, especially in the summer months when the blood banks run low on supply. Just yesterday Jeff was at a clinic to donate his “O neg” blood and he was told that the banks are running short. Would you consider becoming a one time donor or even a regular donor? You can find out more at www.blood.ca and book an appointment for your donation. I have had many transfusions in my treatment history and I know that I can look forward to many more. Your donation will save a life. Literally.

Bone Marrow Transplant (BMT): So what is a bmt? I’m going to refer to the experts here and recommend two websites. The first is found on the Leukemia and Lymphoma Society of Canada website. You can type “Bone Marrow Transplant” into the search box at the top of the page and you can read the first article that comes up titled Bone Marrow and Stem Cell Transplantation. (www.leukemia-lymphoma.org/all_chap)

The other site I would recommend is an American site found at www.marrow.org. If you click on Patient’s and Families at the top of the page, you will find some information about pre-treatment and also a bmt.

There is a lot of reading on these two sites and I’ll warn you, it’s not light reading or even bedtime reading. That said, you will become informed.

Bone Marrow Donor: If you are interested in becoming a bone marrow donor, the Canadian site is www.onematch.ca and you will be given all the information you need to know in becoming a donor. As I mentioned before, I already have two Matched Unrelated Donors (MUD) so you would not be registering specifically for my own benefit. You would be adding your name to a list of self-less individuals who have made themselves available in the case that they would be a match one day for someone they do not yet know.

I see Dr. Crump again on Monday and I’ll find out more specific answers to my own treatments, but until then, I hope all this information is helpful and answers your questions.

With joy in my heart,

H.

The verdict is in.

After much conversation and prayer, Jeff and I have made a decision regarding my treatment options. Yesterday I phoned Dr. Crump’s office in order to begin the process of a bone marrow transplant (bmt) under the team at Princess Margaret Hospital.

Without going into all the details tonight about how we made that decision, please know that Jeff and I are at peace with this decision. I have shared these verses before, but they are worth repeating here.

Philippians 4:6-7 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The peace of God that is described here, the peace that transcends all understanding, is what we are experiencing right now in light of this difficult decision. Jeff and I both know that regardless of the outcome of this decision, that going through a bone marrow transplant is the right option for me/us right now. In fact, now that I have contacted Dr. Crump’s office to begin the process, I have found myself eager to get started.

I am so thankful tonight for a community of family and friend who care so deeply for us. We are encouraged by your words, notes and kindness to us.

With joy,

Heather

***You know who you are and you know what you did. Thank you.***

Well, it was quite a week for us. Monday we were downtown at PMH to meet with Dr. Crump and it was no surprise that I need more chemo. The question is, what kind. The following is part of an email that was sent out to our immediate family earlier this week.

***

Hello All,

I wanted to give you all an update on my health as it stands currently.

Over the last number of months, the conversation with Dr. Crump has circled around the topic of a Bone Marrow Transplant (BMT). To understand this process more, Jeff and I have met twice with the BMT team at Princess Margaret and have had a pretty raw, detailed, day-by-day description of what would be involved in moving forward with this treatment option.

As you know, there is no cure to leukemia, only treatments including the varieties that I have received in the past. The goal of a BMT is a cure.

In the simplest terms, a BMT involves aggressive chemo to reduce the “cancer bulk” in my system, removing my own bone marrow and replacing it with healthy bone marrow from a donor. Currently, I have two Matched Unrelated Donors (MUD). There are of course other risks, including infection and graft vs. host disease to name a few.

Now, a BMT is just an option. The other option is to continue along with various, less aggressive treatments and continue living with CLL.

It has come time for us to make a decision, and as you can imagine, this isn’t an easy decision to make. Would you partner with us in prayer over the next two weeks as we make this decision?

***

We had the opportunity to spend some time in Huntsville, ON this week. We enjoyed the beauty of God’s creation and the quietness that can be found when you get away from the chosen busyness of every day life. We were also thankful to meet with some of Jeff’s friends from his Liberty University days. We have been praying for wisdom as we make these big decisions and God met us as we listened to His Word being preached during daily chapel services.

***

As we left the doctor’s office and I was waiting for my appointment schedule, I was reminded of Robert Frost’s poem, The Road Not Taken.

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

I am reminded in this poem that there are two paths available to walk on this particular morning. Looking closely at both roads, they are seemingly equal. But a choice needs to be made and the writer, in the end, “chooses the one less traveled by” (although he does acknowledge that “the passing there/ Had worn them really about the same,”). Choosing one road means abandoning another. And both choices lead to different destinations.

So that’s where we find ourselves: Two roads diverged in a wood…

With overflowing joy,

H.