External Journal

Just as the doctors predicted I continue to gain strength and energy but at a slower rate now.  This week I’ve managed a full week and only now, Friday afternoon, did I finally crumble and need some R&R.
Running has been a real pleasure; I enjoy exploring my new neighborhood on these outings.  Some conditioning needs to happen to get me to where I once was, but that will come with time and discipline.
Inside I feel normal, but each time I walk by the mirror I am reminded that I’m not quite there yet.  I am still bald and smooth.  Some brave hairs are daring to test the elements and make an appearance but most are still a bit reluctant.

Internal Journal

I feel like this journey has become one of external suffering coupled with internal prayer.

Yesterday I was in my bedroom sitting at the desk writing a letter.  Peter was behind me on our bed.  He wanted a “quiet time” in the same room as me and had nodded off with his favorite blanket.  I noticed, as I was writing, the noises outside: a fire engine screaming by; the local ice-cream truck blaring out of season carols; a tamale vendor touting his wares, “tamales, de puerco, de pollo…”; a car radio.  I am growing accustomed to the noise and most of the time tune it out, but as I paid attention I realized what a racket it was!  Yet there behind me Peter was sleeping.  In the presence of our Father we can experience great peace and security even while noise and chaos is all around us.  Peace in the midst of suffering.

Suffering is universal.  I realize this weekly as I hear personal testimonies at church.  Each week one person shares their story, and, without exception, each shares about a period of suffering and how God has met them there.  There is a wide spectrum of people at our church, everything from people living homeless on skid row to movie producers living in the expensive high rise lofts.  All have suffered.  As I listen my stereotype of the person I’m looking at melts away.  Instead, I see someone who hurts like I do, who is vulnerable like I am, and a sense of kinship replaces the alienating stereotype.  Suffering is universal and at some level it unites us.

The experience of the last months and the closeness of God’s presence carrying me has led me to desire him more in “normal” life.  The readings on “prayer of the heart” that I began before treatment have been my companion even to today.  They lead me to believe that the divine presence I experienced while in hospital is not unique to periods of suffering but is available in everyday living.  One of the authors I’ve been reading is referred to as ‘the New Theologian’ with the term ‘theologian’ introduced in this way:  “It is to be understood…not in its modern academic sense, but to signify a person of prayer, who speaks about the vision of God on the basis of his own immediate experience.”  In other words the knowing of God is not simply a mind knowledge but can be experiential knowing, similar to the knowing a man and wife share, an intimate union.

I live in an impoverished immigrant neighborhood and the suffering here is very visible.  To be a person who carries around the intimate knowing of God in this context, to be an expression of divine peace in the midst of suffering, to extend hope to the hopeless, hope born out of a personal experience with suffering, surely this is evangelism in its rawest form.  Isn’t this blazing light in darkness?

And so as we each go about our “normal” lives “…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”- Hebrews 12:1-3

Amen.

I visited my oncologist on Friday, here are the latest blood counts:

Hemoglobin: 11.4 (normal range 14-18)
Platelets: 114 (normal range 150-450)
White Blood Cells: 4.33 (normal range 4.0-11.0)

My counts are almost normal!

I’ll have a PET scan and CT scan in 4 weeks.  A follow up visit with my oncologist in 6 weeks and a final visit with my stem cell doctor in 10 weeks.  The oncologist seems fairly confident that with the course of treatment I’ve had I can wave goodbye to lymphoma.  I’m not sure what frequency follow up visits will take, the consultation in 6 weeks will clarify that I’m sure.

I went running three times this week.  Running is an overexaggeration, it was more like a trot interspersed with walking – it is good to begin getting into shape again.

My naps are shorter these days, only 1-1 1/2hrs rather than the 3hr naps of two weeks ago.  I need a nap about 4-5 days a week.

I have started slowly integrating work activities into the days, I can manage about one event per day.

Internal Journal

I flip flop between being glad to be improving so quickly and being frustrated at how slowly I’m improving!

Good news, a very good report from Dr. Lill yesterday.  Here’s the details:

Hemoblobin is 10.6, up 0.3 from last week. (Normal range is 13.0-17.0)
Platelets are 82, up 11 from last week. (Normal range is 150-450)
White blood cells are 3.2, up 0.2. (Normal range is 4.0-11.0)
Of those white blood cells the “polys” are at 1459, up 759 from last week! (Normal range is 1800-8000)

What this means is that in a week or so I can start to reintroduce work activities.  Woo hoo!  I can be around people again, so I went to the movies last night with Catherine to celebrate.  I can have my PAS port removed in a couple of weeks.  I can start to see my oncologist, Dr. Rosenfelt, again.  I’ve been “on loan” to the stem cell doctor for the last couple of months, my last appointment with him is in mid April, so now a sense of normalcy can return as I revert back to my regular oncologist.  All very, very good news!

Mum and Dad are visiting this week, they came to the appointment with me.  We were all elated afterwards.  I am recovering.

Internal Journal

Very happy.

We read a Psalm every morning as a family at the breakfast table.  This morning we read:

“…let everyone who is godly pray to you
while you may be found;
surely when the mighty waters rise,
they will not reach him.
You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.” – Ps 32:6-7

I am reminded again of the value of a life of prayer.  Establishing prayerful patterns in our lives when the waters are low prepare us to whether the rise of mighty waters.  It is in the times of peace, while God may be found, that he becomes our hiding place.  So when trouble comes we are able to experience, with clarity, his protection, his surrounding, his deliverance… thanks be to God.  Let us pray.

I went to the doctor yesterday for a routine check up.  The chest x-ray, stool samples and blood cultures that were taken last week all came up clean, no infection.  He has no explaination for the cough I’ve developed (although today it does seem better than it has in a few days), we just have to let it run its course.  It’s the same cough Zoe and Peter have too, what a generous family, sharing like that!

My platelet count continues to rise, 71 up from 32 last week.  Normal parameters for platelets are 150-450.  However, my hemoglobin stays around the same 10.3 (normal range being 13.0-17.0) this would explain my continued lower energy.  I had a couple of days where I felt more energy and I think I overdid it, I crashed for the following two days.  My white cell count is 3.2, a slight rise from last week (normal range being 4.0-11.0).  However, the specific white cells they watch for are the “polys,” my count there is 704 (normal range being 1800-8000) – still very low.  Dr. Lill has no explaination for the continued low values but didn’t seem overly concerned.  We monitor progess week by week, I’m hopeful next week to have improved counts.

My PAS port can be removed in 3-4 weeks, the platelet count has to be sufficiently high to recover from the minor surgery that would be required to remove it.

Overall though I’m doing well.

Internal Journal

Feeling fine.  A little tired of mooching at home – but it’s all I have the capacity for at present.

Last week one of my InnerCHANGE teammates, Zib (abbr. Elizabeth), took me to my doctors appointment as I wasn’t allowed to drive.  Her driving style is similar to her persona, very laid back but quietly competent and caring.  It was wonderful to be driven by her.  She stopped in plenty of time for yellow/red lights, left lots of space between us and the car in front.  She didn’t weave between lanes trying to get ahead, but patiently waited for progress in the lane she was in.  Overall it was a stress free, pleasant experience.  I was able to appreciate the journey we were on, to appreciate other drivers, finding my attitude becoming one of prayer toward others on the road.
I drove myself to the doctor yesterday and struggled between my usual driving style which, to be honest, is a bit pushy and stressful, and the driving experience Zib had given me.  My typical style does not lend itself to prayer for others but frustration  as they obstruct my progress.  When I drove in the more relaxed manner I noticed it to be the more loving way too.
This contrasting experience has become a metaphor of the last few months.  I have been shown, very gently, the path of love, the path of gentleness.  This has come through waiting for days in a hospital room with capacity for little else except to be aware of the presence of Christ with me; through simple conversation with nurses as they tenderly care for me in the middle of the night; through another nurse gently resting her hand on my arm as I was in surgery – communicating love through simple touch; through the delight of other nurses as they taught me their native language; these and many other interactions.  I’ve noticed an internal tension, as I reintegrate into normal life, to revert back to old ways of doing things, of forgetting the path of love and becoming frustrated with the slowness of progress.  I’m recognizing in this the need for intentional choice, to choose the path of love, the path which may be slower but leads to appreciation, beauty, prayer and gratitude.

For the first time in many weeks I went outside, by myself, for a walk.  The warm sun was shining and a gentle breeze blowing as I noticed children…butterflies…flowers straining out of the dirt in the sidewalk…sparrows twittering in the branches.  As I walked I became aware of the absence of my PICC line once again, no constant tugging on my underarm, no itch at the point of entry, no irritation.  Just…well, peace I suppose.  I stopped and some emotion caught up with me.

The doctors say I am in recovery, and until today I have used their language.  When I got home from my short walk the emotion was given the permission of expression.  In recovery is the language of addiction, of people who have a nagging problem, an issue that needs relentless attention for fear of recurrence.  Recovering however, is the language of athletes who have completed a grueling task and can now put it behind them and take time to become restored after a trying event.  I am not “in recovery,” I am recovering.

I arrived home with an overwhelming sense that the finish line has been crossed, the task is complete, the event is over…healing has arrived.  I wept.  And as I wept the loving presence of my Nana, who passed away last year and is the bedrock of faith for our family, came to me and I whispered to her quietly “I’ve made it Nana, I’ve made it.”

“I know my darling, I know” came the reply…and now tears are flowing like the rain that heralds the end of drought.

I have made it.

Being home is fantastic.

As the doctor predicted, this first week I’ve felt wiped out most of the time.  My daily patterns are like that of an infant: I wake up; I eat a little; I move around a little (from one chair to another); I nap (for 2-3 hrs. solid); I wake up…  This level of rest and inactivity has taken some getting used to.  On my second day home I took a shower and that wore me out.  I stumbled from the shower clutching anything that would support me as I was shaking and exhausted.  I made it to the kitchen for a snack which picked me up a little and then back to bed!

Last night I checked my temperature, I had a fever of 101.5F.  My instructions are to call the doctor if I have a fever.  I was told to go to the cancer center.  Thankfully I left after the kids had gone to bed.  After some blood tests I received antibiotics intravenously and was released at 2am.  This morning I woke up feeling much better, no fever and more energy.

This afternoon I had a scheduled check-up with my stem cell doctor, Dr. Lill.  My hemaglobin count has increased from the previous one taken last Friday, that accounts for a slight increase in my energy levels.  My platelets remain the same, a healthy number.  My white cell count has dropped to 2.5 – I’m bordering on neutropenic again.  I was given a shot of Nupogen to boost the white cell count.  This drop is typical in stem cell transplant patients around this time in recovery – my drop happens to be lower than usual which is why I was given the Nupogen.  I’ve also been put on a course of oral antibiotics to keep the infection that caused the fever under control.  I’m now on antifungal, antiviral and antibiotic medication!

Dr. Lill suspects the bacterial infection I have is from my PICC line.  It was removed from my arm, a simple procedure taking only 15sec. but the sense of liberation that accompanies it is enormous.

I’ve had a dry cough for the last couple of weeks that I just can’t seem to shake.  A chest x-ray tomorrow will determine if it is anything to be concerned about.

Internal Journal

I’m happy to be home.

I’m on a steep learning curve trying to balance having a strong mind with a frail body.  This whole experience has certainly provided a mindfulness for those in convalescent homes (of which there are many in our neighborhood), for fathers who are incarcerated, for the elderly (frail in body but strong in mind).  I am taught the value of visiting the sick as I have been visited, the gift even a silent but loving presence can be.  The value of hand written notes, especially funny ones that I’ve been the grateful recipient of.

Zoe and Peter are so happy to have daddy home and ask from time to time if I’ll be going back to spend time in hospital again.  So I’m especially grateful that last nights drama was resolved while they were asleep, they woke in the morning non the wiser.

As a family I think we are exhausted, the demands of family life are amplified by the need to have all home cooked meals, an incredibly clean home and sanitized hands, bodies and children.

Exhaustion though, we recognize, is not worth comparing to the value of being a complete family again.

I’m home!  Hooray!

My white counts were slightly lower than yesterday – no big deal.  Hemaglobin is holding steady.  And the deciding factor of the day, my platelets, have increased from yesterday by 5,000.

Just as the doctors foretold I am tired, but thankful. 

Internal Journal

It is amazing to be home with my family.  The look of wonder on Peter’s face when he saw me for the first time was great – “it’s really you!” was what his face told.  He kept coming close for a hug, then as I crouched down he walked behind me and rubbed my back.  ”I’m keeping you warm dad.”

Zoe and Peter loved looking around my hospital room and I showed them all there was to see.

The moving air as we drove home was a wonderfully stark contrast to the still, stale, filtered air of the hospital.  Being at home I was surprised by the things that overwhelmed me with gratitude.  Color, after three weeks in a monotone room all color seemed especially bold, bright and full of life.  Smell, aroma, Catherine cooking onions, our neighbors dinners being prepared wafting in the evening breeze.  Silence, punctuated by family and neighborhood noise, yet a foundation of silence on which sounds were built.  My room had the nonstop drone of positive pressure air movers in the ceiling above.  Silence is so restful.  The noises such a pleasure to hear.  Life.

I helped Zoe with her homework.  Had a family dinner as Peter cried, he had no nap today and was exhausted.  Even his crying was melodious.  I’m riding on a wave of wonder and gratitude.

Now that I am home I will keep this blog updated on a weekly (rather than daily) basis, most likely on Mondays.  For your prayer, notes, gifts and love we cannot communicate the depth of our appreciation.  The power of the One who answers our prayer is demonstrated in this:  my release only thirteen days after the transplant, unheard of; the sense of peace and life saturating this whole experience; and a sane family in their dads absence.  We have been riding on the wave of your intercession.  With confidence I can affirm the truth that:

God is good, all the time.
And all the time, God is good.

Amen.

Alastair writing today, that in itself an indicator of returning strength!

My white cell count is 7.0, red blood cell and haemaglobin remaining stable.  The platelet count has massively increased due to the transfusion yesterday, this is the final deciding marker we are watching to determine release date.  A large drop in the platelet count tomorrow would indicate that I am still not making enough platelets and would likely remain in my room until Thursday.  However, drum roll please, only a slight drop in platelet count would still enable me to go home tomorrow!  The reason being that platelets remain in ones body for only 2 days, therefore, the platelets from the transfusion would be leaving my system today and tomorrow.  So, even if the platelet count tomorrow is close to what it is today that will be due to my own body making enough platelets to replace what has been lost from the transfusion.

I’ve walked a couple of laps of the ward and I’m feeling the strongest I have in days.

Internal Journal

I feel like a giddy schoolboy knowing that the summer holidays are a couple of days away.

Catherine and I have been reflecting on the work that the Lord has been doing in my body and in our souls during this season in the wilderness, in the cave.  We’re seeing, with gratitude, that the buds of spring are starting to sprout.

Thanks be to God!

His white blood cell count this morning was 2.6.  Dr. Lim indicated that this was high enough to be out of the danger zone, although all dietary and visitation precautions will continue for some time.  His platelets were down, so he received an infusion.  The platelets will be the determining factor for his discharge.  Tomorrow’s platelet count will be higher due to today’s infusion, so the real test will come on Wednesday.  If his platelets have substantially increased from Tuesday to Wednesday he will be discharged on Thursday!  The thought thrills us.

Speaking of thrilled, our kids spent the day with our friends the Porter family.  How grateful we are to all the people who have been loving on Zoe and Peter so tremendously these weeks.  I believe if they remember anything about this experience, it will that feeling of embrace, that knock on the door from the person who has come just to spend time with them.

And He is.

Today Alastair’s white blood cell count was 1.0 (or 1,000).  His red blood cells and platelets were also up.  Woo Hoo!  Alastair is still pretty tired and weak, although this evening before bed he said he was beginning to feel better.  The doctors expect a steep rise on the counts in the next day or two, and they are still alluding to an end of the week discharge.

Alastair had a new nurse today.  (He has probably had about fifteen or twenty different nurses, and without exception they have all been competent and caring.  What a GIFT.)  The nurse today was looking at the photos in his digital frame and, like others have, commented on the beauty of some of the photos.  (Ali has been following his dad’s footsteps in developing an eye, especially close ups in the natural world.)  Anabelle looked at one of a snail’s shell and remarked what a surprise it was to enjoy a photo of a snail shell so much.  To which Alastair replied, “When we look at anything with love, it becomes beautiful.”  She smiled and then called back as she left the room, “Man I really like coming in here!” 

A meaningful reminder for me of how God uses us right where we are.  Indeed, of how God IS right where we are.  May our whole family continue to seek to be present right where we are even as we anticipate and prepare for Alastair’s return.