November 2009


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

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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

Thank you for your patience with me on this site.  The last few days have been rough with nausea setting in.  I’m on some meds to control the feelings and that seems to help.  I’ve been resting a lot and I guess I’m allowed.  I’m trying not to sleep my days away just to combat the boredom as sleeping during the day affects my night sleep and it’s pretty crummy to be wide awake in the middle of the night in the hospital with no sign of morning.

The transplant, as you know, took place on Wednesday around 3:30 p.m.  Jeff was in the room with me throughout the transfusion and a nurse stayed as well to monitor my vitals every 15 minutes.  I’m still trying to understand my own (emotional) reactions to the bmt.  It’s difficult to even begin to understand the self-lessness of the donor and all that their sacrifices will mean for me and my family in regards to my health and healing.  I am humbled and deeply thankful.

I’ve had a few visitors while I’ve been here on the inside, mostly family.  I’m thankful for their visits as they help pass the time and break through the boredom and sameness of each day.

While I’m here my doctors and team of nurses are encouraging me to walk around the ward each day for exercise.  I also have a stationary bike in my room to use.  The more I exercise the faster it helps my immune system to bolster and accept the new marrow.  It is my goal to walk 25 laps of the hallway, twice a day for a total of 2 miles.  It’s a bit of a pain pushing the IV pole around so I try to walk when I’m “capped off” and don’t need to push IV pole around.  I haven’t done too well on this goal the last few days both because of laziness and because of the nausea.  I also have a goal to bike 5 minutes/3 times each day.  I’m not doing well with this goal right now either because of the laziness and nausea.  I spoke with my nurses and they agree that these are good and attainable goals while I am recovering.

After such an anticipated week with the transplant, I don’t have much to write today.  I know that I am learning a lot about myself by being here in isolation and have realized already that God is not just interested in my health and healing while I am here on the 14th floor, but that He is also interested in my wholeness, my character and my attitudes.

With love and thanksgiving, Heather

A friend recently sent me this word picture to encourage me as I began this stretch of the road.  I am sharing it here so that you can all be encouraged by the important part that you play in my journey towards healing.  I have met many of you and I know that there are still many more caring strangers who are loving and praying my family to the throne room of Jesus.  Your role is vital. I thank God for you all. Enjoy.

A Throng:

I see you standing in the centre of a throng of people.

Jesus is with you in the centre, His arms gently but firmly wrapped around you.

Then your husband and son.

Followed closely by your parents and siblings.

The next layer of people surrounding you are a LOAD of friends.

Beyond that thick layer of supportive friends is a “ring” of strangers with a heart and prayers for you.

The outer layer is covered with Holy angels, standing guard.

(This Bible verse has been added by H.)

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.

With increasing joy, H.

Well, after all this waiting I have finally been admitted to Hotel Princess Margaret (HPM).  Jeff, Nathan, my sister Pam and Baby Levi all came down today for the event.  My first appointment was across the street at Toronto General to have my central line or Hickman inserted.  It’s the first time in a long time that I have been anxious and had to work hard to get over my fears.  And while I knew that the procedure wouldn’t be difficult or even all that uncomfortable I cried for the first time in weeks.  I know that the tears were not only a reflection of my fears for the procedure but also represented all that is to come in the next few weeks.  A kind “thank you” goes out to Mark, the technician who held my hand throughout the procedure and distracted me with conversation.  He was even a “car guy” like my Dad so we had lots to talk about.

As for the procedure, the central line was inserted into a vein in my neck and the tube comes out just a little farther down on my right side.  I’m a bit tender but not sore.  The technician said that the freezing will wear off in 24-48 hours and I’ll be pretty uncomfortable (he actually said I’d be cursing at them for putting it in) but I know that in the end, this will make things easier and will eliminate the need for needles and IV’s.  And so, even for this, I am thankful.

After the procedure was finished we came back to HPM and check in upstairs on 14B to my room.  I cried tears of thanksgiving when I saw my room.  I had been secretly praying for a sunny room with a view.  As we walked in, the sun was streaming into the room and my West facing window gives me a view of Lake Ontario and out towards Mississauga.  As the sun set and the city lights rose I continued to be thankful that God cares even about these small details of my life.  The sun and this view, while not physically contributing to my health and healing, are much better than looking out onto a brick wall for the next few weeks.  I can also see the top of the parking garage where Jeff parks so if they park up there I can see Nathan from my window.  It’s a small thing, but it’s something.

I met the doctor and nurses and got settled into my room.  I’m in a private room with my own bathroom/shower.  And by the generosity of some friends from my community of faith, I will have a tv hook up tomorrow.  (I’m trying hard not to think about my shows that I am missing tonight…)

I’ve already had whole handfuls of medicines and I’m waiting on my first chemo dose at 9:00 tonight.  I also found out that up until my transplant (November 18th) I can check myself off the floor and visit the outside world so long as my chemo meds for the day are finished.  This means that I can still see Nathan up until the 17th.  That’s more than I had hoped for or imagined.

I think that’s all for tonight.  I’m ready to do this.  I continually and constantly pray for strength and courage (Be STRONG and COURAGEOUS, for the LORD your God is with you wherever you go.)  I am also reminded again about the story of David and Goliath and love it when David decides to fight Goliath, not because he is strong in his own might but b/c he knows that the LORD of the Angel Army will fight for him.  So, I’m entering battle.  The battle lines have been drawn and I’m ready to fight.  This Goliath is going down, not because I am strong, but because God is strong.

Celebrating the victory (with thanksgiving and joy),

H.

Tomorrow I’m off to check myself in to Hotel Princess Margaret.  I will have a Hickman or central line inserted tomorrow afternoon.  This will assist with IV’s during my stay in hospital and blood draws and will generally make life easier for me.  No more IV’s or poking me with a needle for my blood.

We have been anticipating this day for a long time and we are eager for the transplant on November 18th.  This week will be filled with chemo and radiation to ensure that my own system is ready to receive the new bone marrow next week.

I will be able to accept visitors while I am at Hotel PMH but we have decided that non-family visits will have to wait until after the transplant.  My body and immune system will be so weakened that we don’t want to risk infection by having visitors at that time.  I will write soon about how visits can be arranged, who to contact and the “rules” of visiting me on the transplant floor at PMH.  I know already that I am unable to have flowers in my room so if some of you were thinking of sending flowers in lieu of a visit, please don’t.  They’ll be sent away.  The best way to contact me initially will be through the posts on this blog, by email or by facebook.  Any cards can be sent to the house.  I will do my best to reply to notes but my first priority (of course) will be rest and healing.

I look forward to writing to you from inside the hospital.  Tomorrow’s a big day.  We would value your prayers as we continue on our journey, a journey that started 11.5 years ago with my diagnosis.  Some of you have travelled this road with us since the beginning.  (I remember making all of those phone calls way back when!) And some of you have been walking alongside us for just a little while.  We are so thankful for you all.  We love you and thank God for you!

With joy and thanksgiving,

H.