May 2011


This is one of my favourite Canadian independent wool companies. When I first came out of hospital after my transplant I made a pair of Fiddlehead Mittens for my sister as Christmas present with her wool in the middle of the nights when I couldn’t sleep.
http://tanisfiberarts.blogspot.com/

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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.

Psalm 73:26 NIV
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

Hey Everyone,

I had planned on posting parts of my Clothe Yourself talk slowly over the course of a few days/weeks but so much is happening with my health and with things that I am learning about myself that it just wasn’t practical.  I’ve added a new heading at the top of the blog page called Clothe Yourself.  It is just a copy of part of my message that I spoke a few weeks ago but I think that it makes more sense to have the whole thing listed together.  I will still be unpacking some of what I’ve been learning in future blog posts.  This is actually the second part of my talk, you can read My Story as the beginning if you’d like.  It’s not exactly the same, but it is similar to what I shared a few weeks ago at the ladies breakfast.

Enjoy.

Heather

Health Update:  This will be quick. I went downtown to see Dr. Rotstein today, the infectious disease doctor and he as he walked in the room he said that I was looking better than I was last week. I was surprised because since I saw him last I developed another cold infection which has made me feel short of breath and leaves me  even more winded than before.  That said, on examination he continued to think that I’m getting better.  I think that if I didn’t have this extra infection that I would really be feeling better.  I’m back downtown again for an appointment with the Bone Marrow Team.  Three trips downtown has made it a long week but I have arranged for next week that my appointments will all be on one day.  It’s much easier (and cheaper) to double up my appointments on the same day than make a few trips down in the week.

I’ve also had a few nights of good sleep, 5-6 consecutive hours which doesn’t seem like a lot, but it’s more than I usually get.

So that’s the update.  That’s all she wrote.  There’s more to come but it will have to wait.

Heather

First of all, thank you to everyone who was praying and thinking of Nathan and I as we travelled downtown to my appointment.  Jeff has been really good at training Nathan in how to care for me when we are together and Nathan did a great job keeping me safe and caring for me.

When we arrived at PMH my first stop was Tim Horton’s since there wasn’t time before we left.  The kind cashier handed me both my French Vanilla and a glass of water.  My cough was pretty obvious. I was touched by her thoughtfulness.

I dropped Nathan off at The Magic Castle, which I am so glad that he still loves.  He spends a lot of time there and is well loved and cared for.

After my bloodwork I sat in the BMT waiting room with a mask on my face, coughing up my lungs and blowing my nose.  I was also a weepy mess as I checked emails from you and facebook notes with your thoughts and prayers.  As I said on facebook earlier… I wasn’t surprised that no one wanted to sit very close to me.  I did have one great conversation with a woman (3 month post transplant) and we both walked away very encouraged.

I saw Anna, my Nurse Practitioner (who is soooooooooo great!) and it was decided that on top of the fungal lung infection that I am fighting that I have probably picked up a general cold.  I was given a prescription that should take care of the cold on top of the rest of the meds.

That said, I am still to be monitored closely and so I’ll be making the trip downtown again on Thursday to see the Infectious Disease Doctor and then the BMT doctors on Friday. While it seems like a lot (and it is) I am continually thankful for the care that I receive.  After much discussion last week we are hoping to continue to reduce the high dose of prednisone that I am on, that will be determined on Friday by the bmt doctors. While this drug has good benefits I will be happy to be off of it in the short future.

To top it all off I’ve been reading a book called “When Women Say Yes to God” by Lysa TerKerst.  I am learning a lot and being encouraged.  My heart is swelling with joy. I am overwhelmed with thanksgiving.

Yesterday we welcomed Gemma into our home.  I think Nathan has a new BFF!  He LOVES Gemma.

Continue to pray for us. We know that we are held up only by your prayers and the grace of God.

Love to you all tonight,

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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