Just The Facts


Dear Family and Friends,

It’s been a while since my last post and truly, there wasn’t much to report.  The treatment that I was on had good results and we continue to wait over the next few months to see what types of lasting effects it will have produced. I have had a few CT scans to begin to monitor what the treatment has already started to do and many of the nodules have been reduced and continue to shrink.  There is still that one nodule that continues to baffle each of my doctors (the oncology team, infectious disease and lung doctors).  Yesterday when I saw Dr. Kurvella he reminded me that I have always been in the habit of keeping them on their toes and this thing in my lungs proves no different.  He has suggested that we consider an open lung biopsy in order to get definitive results about what it is they are dealing with.  In the next few days he will confer with the other doctors to see if they agree with this plan.  Dr. K reminded me that without knowing with absolute certainty what this thing is that they are just guessing about how to treat me.  He also said that he was pretty sure that I would want him to suggest treatment options based on fact rather than good guesses.  With tears in my eyes and a smile on my face I said that my heart/emotions would rather that he make good guesses but my mind/thoughts think it would be better to have decisions be made based on certainty.

I must admit this threw me for a bit of a loop.  I had been feeling really good after the treatment at the beginning of the summer.  In fact, I was talking with someone just after my treatments and I surprised myself when he asked “how are you doing these days?” and my answer, without thinking was “GREAT!”  I actually had to take a step back because I don’t remember the last time I could answer that way and have it be true.

Also, I have picked up another infection.  I have a persistant cough from deep in my lungs.  I’m pretty tired and yesterday I was fighting a pretty high fever.

I’m not sure what else to say.  Today I’m doing pretty okay with the news of the possibility of the biopsy.  I go back to the doctors on September 19th and we’ll put together an action plan.

School started this week and I had planned a different beginning to the school year than the one that we are facing as a family.  At the same time, I am convinced of these truths now, more than ever… That God is good. He has a plan for my life.  He loves me, deeply.  He sees me.  He hears me.

With that,

Heather

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Dear Family and Friends,

We just returned home from Princess Margaret and my third round of treatment.  It was pretty uneventful, the IV went in on the first try, there wasn’t any pain and the time went by quickly.  Nathan enjoyed his time at The Magic Castle and Jeff was able to get some work done.  I was able to fit in a regular treatment (scheduled once a month) before a quick visit with the doctor to monitor my progress.  To be honest, there’s not really much news to report.  Things are going well and I have follow up scans scheduled in August for after my last treatment to see how my body has reacted.  My cough has changed dramatically in the past few weeks since my treatments and I am not as quick to get out of breath as before.  These are good signs.

Last week while I was having my treatment I sat and listened to two messages that influenced our decision to go ahead with the bone marrow transplant two years ago.  (You can read about that decision process in the Archives section, July 2009). The first was titled Mighty To Save and the second was about Faith, both talked about the story of David and Goliath. I was encouraged again by these messages, especially the one  on faith.

Now, I’m guessing that most of you know the story of David and Goliath but that’s usually where we stop telling the story.  David defeats Goliath and that’s the end, right? Wrong!

Take a look at 2 Samuel 21:15-22

Wars Against the Philistines

Once again there was a battle between the Philistines and Israel. David went down with his men to fight against the Philistines, and he became exhausted. And Ishbi-Benob, one of the descendants of Rapha, whose bronze spearhead weighed three hundred shekels and who was armed with a new sword, said he would kill David. But Abishai son of Zeruiah came to David’s rescue; he struck the Philistine down and killed him. Then David’s men swore to him, saying, “Never again will you go out with us to battle, so that the lamp of Israel will not be extinguished.”

In the course of time, there was another battle with the Philistines, at Gob. At that time Sibbekai the Hushathite killed Saph, one of the descendants of Rapha.

 In another battle with the Philistines at Gob, Elhanan son of Jair the Bethlehemite killed the brother of Goliath the Gittite, who had a spear with a shaft like a weaver’s rod.

In still another battle, which took place at Gath, there was a huge man with six fingers on each hand and six toes on each foot—twenty-four in all. He also was descended from Rapha. When he taunted Israel, Jonathan son of Shimeah, David’s brother, killed him.

These four were descendants of Rapha in Gath, and they fell at the hands of David and his men.

***

Did you know that part of the story?  The Philistines came back. The Israelites had to fight again. And again. And…

This was of great encouragement to me as I sat receiving treatment for the lymphoma in my lungs.  I had thought that this cancer story was coming to a close, that I was close to the finish line, that the war had already been won. But just as in the story of David, Goliath, the Israelites and the Philistines, the last 12 years from my diagnosis until today have just been part of my story.  There have been many battles along the way and many victories won. I celebrate each one, because of God’s great faithfulness to me.

As I listened to the message on Faith the speaker began to describe some of Goliath’s armour, his shield.  He described it as being as large as a door, made of thick wood, so heavy that soldiers would have worn spikes on their shoes to stop the shield from falling right on their feet. And before the soldiers marched into battle, these shields were drenched in water in order to extinguish fiery arrows from the enemy.  Doesn’t that give you a new picture about the Shield of Faith  as part of the Armour of God that Paul describes in Ephesians 6:10-17?

I want to finish this post off with the chorus of a song that has been of great encouragement to me throughout the years.

He Will Carry Me by Mark Schultz

Chorus:

And even though I’m walkin’ through the Valley of the Shadow
I will hold tight to the hand of Him whose love will comfort me
And when all hope is gone and I’ve been wounded in the battle
He is all the strength that I will ever need
He will carry me

***This is true for me in the middle of my circumstances, the valley, the mountain and the road between.  This is true in the middle of your circumstances, the valley, the mountain and the road between.  His love will comfort you. He is all the strength you will ever need.  He will carry you.

With love and joy,

Heather

Dear Family and Friends,

It has been one week since my first treatment of Rotuxamib.  Things went well last week for the IV and while it was a long day, everything went smoothly.  I came home tired and spent the rest of the week resting and trying to avoid the heat.  I am still trying to figure out whether my tiredness, fatigue and low appetite are because of the treatment or because of the extreme heat.  Probably a bit of both.

Last week, Jeff and I met again with Dr. Crump. We realized that after our initial visit with Dr. Kurvella and Dr. Crump which mostly was to establish an action plan and to put that plan into place, that we still had a lot of questions about what post transplant lymphoma is and how it effects me and my case personally.  Dr. Crump spent some time answering our questions and continued to reassure us that we are on the right track.

After some time of asking questions and listening to answers I asked a question that had been hanging over me, thoughts still unformed as to what the real question was. I asked something like… so what does this post transplant lymphoma mean for me based on being a bone marrow transplant (bmt) patient? To be honest I’m still not sure the root of the question and what I was looking for.  He told us that this lymphoma was a new cancer diagnosis, separate from the CLL that had been treated in the past and by the bmt.  After giving us more information he asked me a question to clarify what I was looking for:  Are you asking about your prognosis, how long you will live?  As soon as he asked I realized that this was not the question that I had been asking. In fact, this question is rarely a concern to me.

I told Dr. Crump (and reminded myself) that I am not concerned about the prognosis of my case, about the estimated time I have remaining now that I have a new cancer diagnosis.  I know that only God knows the days that are numbered for me.  Each of us, in the middle of our own circumstances, are only given today.  I was reminded this week about the Israelites, as they wandered around the desert for 40 years (you can read their story here… (Exodus 16) 

I was reminded that God provided for the Israelites, what they needed, enough for each day. Not enough for the month, not enough for the week (although on the day before the Sabbath the Israelites were required to gather enough for that day and the Sabbath), just enough for today.

And isn’t that the same for us, God gives us what we need.  His mercies are new every morning (Lamentations 3:23-24).  And also, This is the day that You have made.  I will rejoice and be glad in it.

I’ve thought about this a lot over the past few weeks, about how I/we should live my/our lives.  About what it means to live today.  I mean to really LIVE.  To be present in the moment, wherever it finds you.

Nathan and I have been watching the movie Kung Fu Panda a lot lately.  One of my favourite lines comes from the Kung Fu Master to the newly named Dragon Warrior, Po.  He says, Yesterday is history.  “Tomorrow, a mystery.  Today is a gift, that is why it is called the Present.”  Each one is important, not to be ignored.  But today is what is in front of us.  Today is the day that we LIVE.

There is a song that I’ve really enjoyed over the years by an artist Mark Schultz called Time That’s Left.  It asks the questions: What will you do with the time that’s left? What will you do with the time that’s past? What will He say when your time has come?  I enjoy the song more than the video but the words always remind me to live my life with intention, to live now, to live with purpose.  Now, I can’t say that I always do this, but it is my goal.

As I mentioned above, today is Round Two of my fight, there are four rounds of this battle and the scores won’t be tallied until the end. But in the meantime, I will live today, be present in the moments ahead of me, strengthened by God’s grace, peace and strength, just the right amount for today.

Enjoy your day, whatever it holds.

Live fully today,

Heather

I’ve been working really hard over the last few weeks to start my day off by praying and “dressing myself in love”, making a deliberate decision to choose love over anything else so that my thoughts, actions, words and behaviours would be filtered through love. And as I mentioned before there are times when I have noticed a difference in what my natural response may have been because I was aware of choosing love first.

But then I started to think a little bit more about love.  What is love?  It was just a thought, not exactly a prayer but God was listening and quickly answered back with a verse that I had memorized when I was a kid. This is Jesus speaking to his disciples.

Greater love has no one than this: to lay down one’s life for one’s friends. John 15:13

I was a bit startled by this answer because it really was just a thought across my mind. I wasn’t looking for an answer yet and that seemed pretty big.  In fact, I was just looking for some nice things to do for my family, friends, neighbours and people I come across each day.  I thought the answer was to be more patient,  more forgiving, more kind… But this answer, from the mouth of Jesus no less, seems to be a pretty all-encompassing answer.  Read it again:  Greater love has no one than this: to lay down one’s life for his friends.

Before I go farther I think it will be helpful to read the verses surrounding this bold statement about love in John 15:9-17.

9 “As the Father has loved me, so have I loved you. Now remain in my love. 10 If you keep my commands, you will remain in my love, just as I have kept my Father’s commands and remain in his love. 11 I have told you this so that my joy may be in you and that your joy may be complete. 12 My command is this: Love each other as I have loved you. 13 Greater love has no one than this: to lay down one’s life for one’s friends. 14 You are my friends if you do what I command. 15 I no longer call you servants, because a servant does not know his master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.16 You did not choose me, but I chose you and appointed you so that you might go and bear fruit—fruit that will last—and so that whatever you ask in my name the Father will give you. 17 This is my command: Love each other.

So what is love? What does it mean, to lay down your life for a friend?  That answer has come more slowly to me over the past few weeks as I read about love, think about love, act out in love and speak in love.  And the answer has come when I have forgotten about wearing love at all and I have lashed out, become frustrated, not cared for others or put my own needs first. And believe me, it is something that I am still learning!

The thing that I have learned the most is that loving others means an attitude and action of putting others first, their needs before your needs.  And if I’m honest,  it’s hard work and if often reveals my own selfishness and wanting my own way.  But I know that as I pray each day and clothe myself in love that this will become easier and more natural. This is the process of becoming more like Jesus.  It is not by my own good decisions but by the power of the Holy Spirit in me (this will be a post for another day…).

Health Update:  I also want to let you know that since my last post.  My lung biopsy has been scheduled for Tuesday, June 7th.  I need to arrive at Toronto General Hospital for 8:30 and the biopsy is schedule for 9:30.  It will involve a CT scan and an xray to determine where the doctors should do the biopsy.  After the biopsy is reviewed I will be taken to rest for a number of hours and be monitored by the nurses.  It should be a full day downtown before I am released to come home.  I’m am eager to know the results of the test so that we can make an action plan to fight against it.  That said, I’m not all that excited about the procedure itself. I am working hard to not worry and being disciplined to lay this at the feet of Jesus. I have been reminded over and over this week of the verses “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” found in Matthew 11:28-30.  I am also encouraged by these verses from Isaiah 40 

Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

My prayer for you today is that you will find rest in Jesus and soar on wings like eagles.

With Love,

Heather

Dear Family and Friends,

Some of you will already have read this news via our mass email on Saturday but I didn’t get a chance to post it here until now.  I will post the email that was sent out and then follow it with some thoughts over the weekend. Thank you again for all your prayers and thoughts towards us. We know that you walk journeys of your own and we would love to walk beside you too.

To Everyone,

Thank you again for your continued prayers, encouraging notes/emails, and your friendship as we’ve bee journeying down this bumpy road the last little while.

Heather has completed her second week of multiple appointments down at PMH & TGH (thank goodness they are right across the street from each other).

Good News

Heather has been told by Dr. Lipton (who heads the bone marrow transplant team) and by Dr. Rotstein (infectious disease doctor) that the infectious spots on her lungs have reduced in size to the point that they are almost gone. That is AWESOME news and we are so thankful to God for allowing the medicine to work and the continued involvement of both medical teams from both hospitals.

Bad News (Maybe)

Heather was also told that she has some spots on her lungs that have grown in the past month. They plan to do a biopsy of her lungs next week to run some tests and to see what these spots could be. They don’t want to rule anything out so Heather was told that these spots could be the CLL returning or even some other form of lymphoma.

Obviously we know that the doctors are just doing their jobs and clearly communicating the many possibilities but this news was disheartening. Even if it the test come back negative those words have been hard to hear, especially at 18 months post bone marrow transplant.

The Plan

Heather has her lung biopsy the week of May 24th and then we will get the results of the biopsy the week of May 30th. Also, Sunday, May 22 we will praying with our pastors and elders from our home church after our morning service, according to the book James chapter 5 which says, “Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord.15 And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven.”  If you would like to join us in prayer at this time, wherever you are in the world, once everyone gets together we will be praying between 11:30am-12:00pm EST.

Blessings,

Jeff, Heather & Nathan

Thoughts from the Front Lines

Friday was difficult for me in a lot of ways.  It was another early day to be downtown and I had multiple appointments, each with their own waiting times.  I was tired but able to move through the day and the appointments without getting frustrated. When I spoke with Dr. Lipton (bmt team) he had just finished talking with the radiologist about my CT scan and relayed his concern about the spots that had grown since the last scan.  When Dr. Lipton told me about these spots, the possibilities of what they could be and that they were scheduling a lung biopsy I was really caught off guard.  I mentioned before that I’ve been pretty emotional and weepy and his new, of course, set me off.  I had travelled downtown that day expecting a pretty routine set of appointments so this news was a surprise.  Dr. Lipton reassured me that we don’t know what these nodules are but that it is best to investigate and discover what they are.  I/we agree wholeheartedly. I have mentioned before, many times, that I am so thankful for my health team and the care that they provide for me. He gave me a hug before I left and made sure that I was okay before he left. I trust his wisdom and care for me.

Even though this news is (as Jeff says) bad news, maybe… I agree.  I am not scared, I am not angry at God, I was surprised, thinking only of the good news that the infection was clearing up.  I had forgotten that a lung biopsy was a possibility from the beginning.

I/we also need to keep going back to when Jeff and I made the decision to go forward with the bone marrow transplant.  When we made the decision we knew that this was an act of obedience to God and that REGARDLESS of the outcome, whether the transplant was a success, made no difference or if I died as a result that this is what God was calling us to do.  We don’t understand this in it’s entirety (and probably won’t this side of heaven) but we know that we were obedient and that God is faithful.  That said, it is much easier to be happy with our decision to be obedient when I am feeling well, when I can recognize my face in the mirror, when I can sit on the floor and play with Nathan, when I can go out for the day without a box of kleenex or even tie up my own shoes.  But when difficulties set in, when it’s hard to climb the stairs or to sit and watch Jeff and Nathan play ball from the side it is harder to be joyful in our decision.  It is a discipline of the mind and heart to remember that God is still faithful, still watching, still providing and still healing me.

Yesterday Jeff and I asked the elders of our church and some friends to join with us in praying for God’s healing according to James 5 (see above).  For us, this was another act of obedience.  As much as I love my healthcare team, I know that it is God who is my Healer and the One who knit me together in my mother’s womb (Psalm 139). We eagerly wait for this coming week and all that will result from our/your prayers, the test results and meetings with the doctors.

There is so much more I want to write, things that God has been teaching me about Love and the idea of dressing in Love everyday and what that means to Love and how this has and is making a difference in my life but I’ll save that for another day.

With love,

Heather

Good Morning! It’s early but I’ve been up for a while. I’ve been in and out of sleep for the last hour and thinking and praying about the day. I also wanted to share another health update.  I was downtown yesterday again (yes… that’s three times this week!) and my team continue to feel that we are on the right track with fighting the lung infection and the secondary cold that linger around.  A CT scan of my lungs has been arranged for next week along with a once a month IV treatment that will help to boost my immune system. I am thankful that even though I have a lot of appointments next week they are all scheduled on the same day. This makes a world of difference! I continue to have a lot of optimism about my health and I’m in good spirits.

That said… it’s been a difficult few weeks, physically and emotionally and I want to write it out here both for my own benefit (and future reminder… I’m such a glass-half-full kinda gal that as I look back I often forget how I was really feeling) and so that you also can understand what’s going on and how to best pray for me and my family.

Physical

Breathing: The lung/chest infection has left me pretty short of breath.  Climbing even just one flight of stairs is like running a race (okay… I’ve never run a race but I can imagine…) and I’m left pretty winded, breathing shallow breaths, trying to recover. If I do need to climb the stairs I’m always mindful of all the things I need to get from one floor to the next. If I forget something on another floor, I often ask for someone else to get it. Breathing is also difficult. I feel a tightness around my lungs constantly and my breaths are short and shallow. I have also developed quite the cough and when I’m in a coughing fit, it makes my breathing all the more difficult. I do feel that I am coughing less but my body is sore from the strain and it is difficult to breathe deeply for an effective cough. My muscles are sore from the coughing.

Weight Gain: I’ve been on a high dose of prednisone for a while now in order to treat the graft-vs-host disease in my mouth. One of the common side effects of this drug is water retention and weight gain.  In the last 4 months I have gained 40 pounds which is significant. While looking at websites that talk about this effect they often refer to the swelling in the face as “moon face” and the fat storages on the back as “buffalo hump” and these are all true of me.  I also noticed the other day that I have three chins.  My body has swollen beyond what is comfortable, in some places leaving bright red stretch mark stripes. I feel constantly that my skin has been stretched beyond it’s limits. I have difficulty with mobility and simple tasks like tying my shoes, getting dressed, turning to look behind me, taking of my jacket or getting up and down from the couch. We are in the process of reducing this medication, slowly. It is not one that can be just cut off and the hope is that once the dose is much lower that these effects will be reversed.  I’ve always been pretty small and never really had to worry about body image so this has been new for me. I look in the mirror and often wonder who’s reflection that I see. I don’t write this to complain or even for reassurance that “everything will be normal soon” or “you’re still beautiful” or… I know these things. I know these things deeply.

Emotions: The last few weeks have been crazy for me to in an emotional way.  I think in part that it is due to the medications that I am on. I find that I have a difficult time focusing on tasks and bringing them to completion.  My thoughts are often muddled and I have a short attention span. I have also been overly weepy in the past few weeks. The tears seem to come from no where, at any time.  The weepiness is not connected to sadness but often to a sense of being overwhelmed. I am overwhelmed by kindness, by love, by thoughtfulness… really… anything sets it off.

This verse really summarizes how I feel.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
I’m not sure what else to say so I’ll sign off for today.
Thank you for your ongoing prayers for me and my family. We love you guys and feel supported and surrounded by your love.
Love Heather

It has been a crazy week since my last health update.  I am thankful for your prayers and concerns and kindnesses towards us.  We have been well loved and feel that deeply.

Health Update: Since my appointments with the doctors on Thursday my health took at turn for the worse.  I developed a new cough, more shortness of breath and wheezing. I contacted my doctors this morning to see what should be done and since I was scheduled to go down for bloodwork on Tuesday anyways, my Nurse suggested that I come by the clinic to be seen.  I am happy with this action plan and of course, so thankful again for my health team and the care that they give to me.  Once I know more, I’ll write more.

Family Update:  Many of you know that Jeff and I have had a number of people come and live in our home over the last 9.5 years of our marriage.  Each person for a different reason, season and time and all of us have learned a lot about what it means to live in community.  We don’t have a separate apartment, entrance or kitchen for those who come and stay.  We have a home and we’re happy to share it.  My favourite comment of all is from a dear friend who came to live with us for 6 months (prior to her getting married) just 1 year after Jeff and I were married… she said it was the best marriage counselling she could have ever had!  She says this, of course with a smile on her face.  We all learned a lot that year.

When Jeff and I purchased our house 9 years ago we knew that this was God’s House and that we were responsible for managing it in a way that was/is honouring to Him.  Having others come and stay with us has been a part of the unique tasks that God has called us to over the years. We see this as more than just Hospitality, although that is a big part of having others living in our home, sharing our meals, laundry… Life.  We often call it Familying. It’s hard for me to put it into words but this really is the best description that I can offer.

I also look back at when Jeff and I were hoping to have a child.  At times it seemed like an impossibility because of my health. Every time we talked with the doctor about a baby, he countered back with chemotherapy.  Jeff and I both came to the realization that families come in all shapes and sizes  and from a variety of ways.  When Nathan was born 4.5 years ago it was a huge delight to us (and of course he continues to bring such joy to our lives) but we had to come to a place to recognize that my/our childbearing years were over and that we would be a single child family.  For me, this was difficult to surrender to God but I continue to trust in His plan for our lives.

And yet, as I’ve said before, families come in all shapes and sizes.  Our family is growing again.  We have invited Gemma, Jeff’s cousin from Ireland to come and stay with us.  She is here on a working visa and will be arriving tonight.  And since we already have someone living here with us in community, our family will be growing to 5.  We are excited to have Gemma come and stay with us, to help her find work (anyone nearby hiring?) and to pour our lives into her.

Even though our house is already filled to the max we believe that this is what God is asking of us and we are ready to respond in obedience.  Even since making this decision on Friday, God has confirmed our decision and provided in some pretty fantastic ways to make room in our home and our hearts for her to arrive.  Over the weekend we were able to purchase a brand new twin-over-double bunk bed (under our pre-determined cash only budget,  and with a discount for picking it up ourselves…!) in Nathan’s room where he and Gemma will share for now.  Through www.thecommmon.org, a website used by our church we were able to furnish (for free) the room with a dresser and night table, were given a mattress for the top bunk and a kitchen table that will fit us all.   We are thankful to God for His Provision of these items. We are overwhelmed and excited about what the next few days, weeks, months will hold for our family. We would value your prayers as we add Gemma to our family.

Over the years I’ve learned a lot about what it means to live in community with others but I know that I’ve still got a lot to learn. Sometimes the learning is easy.  Sometimes the learning is hard. Always, the learning is worth it.

With overwhelming joy,

Heather

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