Listening

I’ve been thinking about how much harder it has been to hear God’s voice since I’ve been back home.  At first I couldn’t really figure it out until I realized that in hospital isolation, God had my full attention.  But here at home there are a lot of distractions.  Now some of those distractions are good and some of the distractions are just that, distractions.  Listening to what God has to say requires me to set time aside to listen, to put down or put off the things that I am doing or wanting to accomplish (think: put down the knitting Heather…) and decide to read the Bible, a book, sit quietly in prayer or listen to a message.

It was a few weeks ago that I began to think about this, you know, why was God’s voice so hard to hear.  I sat down on a Sunday morning when Jeff and Nathan were at church to listen to a television church service.  I tuned in to hear Charles Stanley preach.  He was part way through his message and the topic was Obedience.  I had to giggle a little bit at God’s sense of humour towards me because if you followed along with these posts when I was in hospital, obedience was one of the central issues that God spoke to me about.  The message caused me to reflect on my time in hospital, the things that I had learned and what new steps of obedience God was calling me to.

The other day I had a neat experience with Nathan.  He was having his nap and I was knitting and the tv was chattering mindlessly in the background.  I  decided to put down the knitting, turn off the tv and start a new book that lying on the dresser.  I knew that if I didn’t stop what I was doing to spend time in prayer and reading that soon Nathan would be awake and I would have missed my opportunity.  The first few pages talked about looking for God, listening to God  how God is always with us.  Just then Nathan stumbled out of his room and came running towards me.  He asked me what I was reading.  Here is the conversation that I would have missed if I hadn’t listened to God’s prompting and put my things away to spend time reflecting on Him.

Nathan: What are your reading?

Me: I was just learning that God is always with us.

Nathan: He IS? (clapping) YAY!

Me: I was just going to pray and thank God for always being with us.

Nathan: No Mommy, I want to do it. (folds hands and closes his eyes) Dear God, thank you for always being with us. Amen.

Isn’t that so beautiful?

Update: Since my last update my twice weekly appointments to the hospital have been changed to weekly appointments.  I am scheduled to go down to PMH every Friday and this works well for our family as Jeff is able to come down with me and Nathan can go to The Magic Castle.

Also, I have reached my second date milestone: Day +60 was earlier this week and so I am expecting a bone marrow biopsy tomorrow when I go to my appointment.  My nurse encouraged me by telling me that it’s not a full out bone marrow test since they just use a small needle.  I’m not sure that it really matters what size needle they use but the reality is the test will give them a peek into what my body is doing at the marrow/cell level and how well the transplant is taking.  So far the team is happy with my blood count results and I am eager to see what is going on at a deeper level… even if it means they have to drill into my bone to get the results.

I’m still not sleeping very soundly and wake up a number of times throughout the night.  This could be the result of some of the medication that I am on and so as they begin to wean me off some of my medications I am hoping to to get a better night’s sleep.  I am reminded though that sleepless nights are common among my peer group of moms who are up with newborns or kids who are up through the night.  Talking with other Mom’s, I am reminded that I am in good company in the “sleepless night’s” category.

As always, thank you for your prayers for me and my family.  We are humbled by your ongoing love and support for us. We love you!

With thanksgiving and joy, H.

 

Remember Me?

First things first.  I need to apologize for not posting on this blog sooner.  I have never felt the need in the past to apologize for the frequency in which I posted updates, but this time is different.  I know that I have not posted at all since before I left the hospital and quite truthfully, I feel that has been unfair to you, my friends, family and strangers who have loved, cared and prayed for me (and my family) every step of this journey.  I know that for some of you this is the only place that you have access to updates and I haven’t provided you with those.  For that I am so sorry.  I have lots of reasons and excuses, some more valid than others.  Please accept my apologies and I’ll work harder at getting out posts on a more regular basis again. I am, as always, so thankful for your prayers and love for Jeff and I.  I have been overwhelmed by this whole BMT process and the love that has been poured out to us in so many practical and creative ways.

An Update: Well, I’ve been home for about 3.5 weeks now.  They say “there’s no place like home” and that has truly been the case for me.  I enjoyed being in my own house with my own food, furniture, family, Christmas decorations and the things I love surrounding me.

There have been a few blips in the road since being home though… on my first night home I came across my first snag… two medications to be taken at the same time, one with food and one on an empty stomach.  That discrepancy resulted in a late night call to the Nurse Supervisor and was cleared up the next morning, but was quick reminder that while I was at home, help was still just a phone call away.

The other “thorn in my flesh” was that I left the hospital with a bladder infection.  Some of you will have heard all about how terrible this infection was.  It was a virus and so not treated by antibiotics and at it’s very worst, had me running to the bathroom every 5 minutes.  The infection was all consuming from both a physical and emotional stand point.  And as you can imagine, it kept me up at night so my sleep was affected which also then played into the rest of my day.  And since I was running to the bathroom so frequently, I was unable to leave the house except for hospital visits.  Even then, we had to change our route to the hospital (we take Kingston Road now) and believe me when I tell you that I know where every bathroom in every fast food restaurant, gas station, coffee shop and Mom and Pop shop along that stretch of road.  At it’s worse, Jeff stopped three times on our trip to the hospital and Nathan commented “but Mommy, didn’t you just go to the bathroom?”  I think that the infection is gone (I say that with great hope) but it was miserable while it lasted.  I’m almost able to look back and laugh at the absurdity of the infection, but not quite yet.  I am able to recognize that had I been feeling better that I probably would have pushed myself too hard this Christmas season and I’m sure that would have resulted in other problems.

bmt News: I am scheduled in at PMH every Tuesday and Friday to be followed by blood work and a visit with one of the transplant team, either a nurse or a doctor.  So far, they are all pleased with how the transplant is working.  My blood counts are doing  what they are supposed to do and are coming up into normal ranges.  My liver function which was a concern in hospital is all but normal again and my eyes are no longer glowing yellow.  I am thankful for follow up appointments and that I am monitored so closely by the doctors and nurses who know this bmt stuff inside out.

Now that I’ve been home and I am beginning to feel like myself again (and no longer need to plan my outings around where the bathrooms are) I am starting to think about how I will head back out into the real world.  I’m not ready, of course, to jump right in but it was nice to enjoy dinner at a friends house last week and I also enjoyed my first play date with Nathan this morning.  I’m still tired a lot but I hope that some good solid nights of sleep will take care of that.  I had one 3 hour continual stretch of sleep last night, the longest since I’ve been home, but I also still have long periods of awakeness that are frustrating.  In general, I feel good, not great, not bad, just good.  I’m trying to be helpful around the house as much as I can when I’m able and I pass when it’s going to be too much.

I’m also trying to find a balance with Nathan as he can give me a real run for my money and tires me out.  We’ve read lots of stories together and had some really good snuggle time since I’ve been home.  I cherish those moments together b/c he’s never really been a cuddly fella.  It’s obvious to us that Nathan is glad that I’m home and has recently become concerned at bedtime about who is going to be at the house at night to watch him.  He told me the other night about how he didn’t want me to go into the hospital anymore because then I would miss him and he would miss me.  He’s right! And believe me, the hospital is the last place that I want to end up.

I’m still processing and internalizing what having had a bmt means.  I’m not sure how I thought I would feel and to be honest, it’s only since the (all consuming) bladder infection has started to go away that I have had the energy to even reflect on how I’m doing emotionally and physically.  There was one day when I thought to myself “what have we done?” and I needed to go back and remember all the ways in which Jeff and I made this decision and rest in the fact that we had made a good decision, the right decision.

I think that’s it for tonight.  I’ll write more as I’m at appointments and as I know more.  I still value your prayers in my healing.  I’m not out of the woods yet.  I’m still monitored because there is need to be monitored.  My first bone marrow test is at my Day +60 appointment and that’s coming up soon.  This will give the team a quick look into how the new marrow is working and combining with mine to achieve healing (or as the doctors say, a cure).

Thank you again for following along with us.  I have missed writing these updates and hearing from you.

With thanksgiving and joy, Heather

 

Obedience First Day +13

I’m writing this in the early AM hours of the night.  I’ve struggled with night time sleep in here and it’s a tough time to be awake.  The sleeping pills that I’ve tried haven’t worked for me but I spoke with the nurse tonight about a solution for tomorrow.  Also, waking every hour to use the washroom b/c of my high volume of saline and other meds doesn’t help me stay asleep.  I’m like clockwork.  (TMI? Sorry)

***This coming weekend Jeff was scheduled to be away in Vancouver for a National Youth Workers Convention.  It is an annual convention, usually alternating between Vancouver and Toronto.  Jeff was to help out coordinating volunteers and was to give a seminar during one of the elective sessions.  He has also worked behind the scenes (tirelessly and with joy) on the social medial side of the conference.

Jeff and I had agreed back in the summer that unless there was a good reason for him to be here in TO that it would be fine for him to attend the conference.  We still agreed on that last week.  Then, even though there is good prognosis for me this weekend, I felt a prompting to ask Jeff to stay home this weekend.  We always knew it would be a possibility, but believed that going to the conference would be beneficial for him.

Earlier this week I asked Jeff if he would reconsider.  Not because of any sense of alarm here on 14C but just because I wanted him close by.  He thought about it, we wrestled with it by phone and by facebook and in the end, he agreed to stay.  It was a difficult decision, and, truthfully, disappointing for us both that he would remain home.

I believe that God was using this as an opportunity for obedience in both our lives, my asking and his responding.

This morning when my doctor came in he told me that in all likelihood I will be granted a weekend pass to go home and have a trial run, that my counts are arriving at levels that would allow me to be at home to see how I will do.

Even in the midst of Jeff’s sacrifice, God has jumped in with “more than we could ask or imagine” (Ephesians 4).  We are eager to be together as a family.

I know that this blessing and joy is as a result of our obedience.  This has been the pattern of the last year of our lives.

Obedience First.

 

Reality and Expectations Day +11

Dear Friends,

The past few weeks can only be described by great extremes.  I had expected to feel a little stir crazy, and I have.  I had expected to feel really tired, and I have (I slept until 3:30 p.m. yesterday).  I had expected to have mouth sores, and I have (although if I lay ever so still I can avoid a lot of the pain.  I had expected to have a stream of visitors, and I have.  I had expected to have times of isolation, and I have.

Some of the things that I didn’t expect though were the extremes. The last few days I have been so tired.  In fact, today has been one of the few days that when I woke up I felt as though my sleep had accomplished it’s purpose. I felt rested.

Another thing that I hadn’t expected was choosing isolation for myself.  The last few days my mouth and throat have been so sore and I have found that I can have considerable relief with the medications (!) and by not talking. Perhaps I should have warned those of you who know me well.  Not talking has been a difficult task but as far as I’m able, I’m only talking to the nurses and doctors and those people who are responsible for my care.  This at times means only short conversations with Jeff and Nathan and only one really short chat with my parents.  I spoke with Eileen (Jeff’s mom) when I first arrived in at Hotel Princess Margaret but not since those initial days.  Who knew that I would enjoy the silence!

In fact, even doing nothing all day, I can tell when I’ve done too much or spoken too much!

Some of you know that Jeff managed to catch a cold from Nathan the other day.  Even for Jeff to come and visit, he will need to wait 3 days past his last symptoms.

As for visitors… I’m not sure what to think these days.  I have cancelled my visitors again for today and I am happy with my decision.  The more time I can give my body (and my throat/mouth) to rest will be of the greatest benefit to me.  I know that even though some of you would like to come for a visit, please know that the decisions that I/we are making are the best for me right now. Believe me, if I was feeling better, I would love for you to stop by to pass the time with a game of Scrabble or a just a chat.

I guess I just wanted you all to know that I can feel your love and encouragement even here on the 14th floor.  I look forward the the next few weeks, months, years and, really, a whole lifetime ahead of me to visit and to catch up on the last few weeks.  It has been so wonderful for me to have such instant response/replies to my Facebook updates and to my complaints for more morphine.

I love you guys! And I know that I am loved.

With ongoing joy, Heather

 

A Look in the Mirror

Forced isolation is hard. I mean, yes, I know that I signed up for this transplant, but this isolation is hard work.  I’ve talked before that fighting cancer is not just a physical battle but often a mental battle as well.  A battle for my mind.  I have rarely felt that truth so powerfully and completely than during my time here in isolation.

I’m learning a few things about myself too.  I’m learning that I am capable of great courage and strength and I am capable of great fear and uncertainty.  I am capable of great kindness, love and thanksgiving mixed in with great ugliness, lack of motivation and laziness.

So what happens when you look in the mirror and you don’t like what you see?  It’s time to make a change.  Some changes will be easy I hope.  Some changes will be hard.  I’ve learned in my short time here in isolation that God is not only concerned with my health and healing but that He is also concerned with my wholeness and my holiness, in making me more like Him.

I know that this blog is usually reserved for the “rah-rah-sis-boom-bah” Heather but I think that this note is a good reflection on how I’m doing and dealing with my time in isolation.  I’ll be listening a message from the current series at our church called A Normal Christian Life.  This message series began a few weeks back and has been so practical.  You can listen or watch it by following the link above.  James 1:22-25  Do not merely listen to the word, and so deceive yourselves. Do what it says.  Anyone who listens to the word but does not do what it says is like a man who looks at his face in a mirror and, after looking at himself, goes away and immediately forgets what he looks like. But the man who looks intently into the perfect law that gives freedom, and continues to do this, not forgetting what he has heard, but doing it—he will be blessed in what he does.

Thanks for your notes, cards, messages and other ways that you have found to care for my family and I .  We love you!

Heather