Archive for December, 2010

12.31.10

December 31, 2010

Susan was moved this morning to the hospice unit at the hospital.  It is a bigger room than the ICU, with a good space for her and another for family, with a sofa and some chairs.  There has been no change in her responsiveness, not that we expected any.  Her body is slowly shutting down.  We know that she is preparing now for the next stage of her life.

Our family is making it, we are just very sad.  (understatement of the year)  Different emotions hit at different times, and the slightest thing can set us off.  Music tends to get me – several times over the last few days I’ve heard songs while driving back home or to the hospital that cause me to lose it.  I’m sure the other cars driving by don’t know what to make of me.  It’s hard to imagine the kids growing up without a mother, Susan’s parents living without one of their daughters, and me facing a future without my wife and best friend.

Susan and I love the musical Les Miserables (not sure what this says about me) – she took me to see if for the first time in New York ten years ago.  It’s such an amazing story of grace, forgiveness, pain and redemption.  She has the CDs with all of the songs and at first I have to say I couldn’t stand when she would play them.  But I got used to it, and after I saw it live, I actually began to enjoy the songs.  There’s a line in the song “I Dreamed a Dream” that keeps hitting me in my sadder moments, where Fantine says “But there are dreams that cannot be, and there are storms we cannot weather“.  It’s just a truth of life, and a tough one we are living now.

Not all dreams come true.  And you can’t make it out of every storm.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.”  -Psalm 23:4

God doesn’t promise that all of our dreams become reality.  At what point did we start believing this?  He is not a genie in a bottle.  The promise is His presence.  And I will say this – I am feeling His presence in a tangible, practical way today.  I know that Susan is too.  God is walking with us through the land of shattered dreams and uncontrollable storms.  His grace is all over our kids right now.  And that will be enough.

Jerel

12.30.10

December 31, 2010

Thank you for continuing to follow and pray for Susan and
our family.

Susan was in the ICU all day and had a fairly
restful day, but was basically unresponsive. Her vital signs
are stable, but her breathing is growing gradually slower and her
blood pressure is moving down. They say that these are signs
that she is in the final stages of her journey.

Tomorrow we
will move her to the Hospice unit in the hospital. The rooms
are large and comfortable and the floor is quiet. It will be
a better place for her, and us, during our time together. She
has made so many friends, even in the hospital. Nurses that
were with her the past few weeks on the cancer wing are coming by
and spending time with her. Even as she has struggled so
much, she has shared her smile, bright eyes, and great sense of
humor with everyone around. Even here she makes an impression
on people. They can’t forget her, and as you might imagine,
everyone loves her already. Which, of course, is just like
her.

I am so grateful for the time I have been able to spend with
her. We have known each other twenty years, and married for
fifteen. They have been the best years of my life. How
did I get to be the one to be with her? It has been the
greatest privilege I’ve ever had. She is the sweetest,
funniest, smartest, most honest person I’ve ever known.

She
makes people feel comfortable. That is her gift. She
wants everyone around her to feel good about themselves.

I talked
to the kids last night about what is going on, and how she is not
going to be coming home. They wanted to come see her, so I
brought them in this morning. I am so proud of them, they
were so brave and sweet. I brought them into her room one at
a time. Bailey was so beautiful and caring, holding her
mommy’s hand, giving her a sweet kiss on her cheek, the
kind that Susan loves so much. Just like her mommy. Christopher was more
expressive and emotional, throwing his arms around her neck, not
worried about the lines coming out of her in every direction, or
the oxygen mask on her face. He kissed her cheek and rubbed
her hand. After a few minutes I asked him if he were ready to
leave. He said, “I want to stay with mommy forever.” Me
too. I held Luke and he leaned against my chest and peeked at
her, blowing her kisses.

What our family believes is that we
will be together forever in the end. Being on this side of
things, that is a very comforting thought. It gives us great
peace to know that this is not the end of things for her, or for
us. If what we believe is true, this ending brings a new
beginning. Where Susan is whole, joyful and free. So my
prayers for her have changed from asking for physical healing in
the here and now, to asking for what is best for her. To
asking for her freedom, for her peace, for the presence of God to
meet her where she is. Freedom from this cancer.
Freedom from the body of hers that has become a prison.
Freedom to enter into the full presence of God with wholeness and
new life. I can’t even comprehend what that means, but as sad
as I am, it excites me for her. Someone that I have known so
intimately is going to a new place, a new adventure, a closeness
with God that we can only dream about. A reality that we
believe is made available by Christ himself. One day, I can’t wait
to talk to her about it. For now, we will do what we can do.
Hold her hand, pray for her, whisper in her ear, love her, love one
another, remind her that we are here.

So we are grieving. But (and I can honestly say this) not as people without hope.

Much love to all of
you. You are carrying us with your prayers right now.

Jerel

12.29.10

December 29, 2010

This will be brief again, because I’m getting ready to head back to the hospital.

This morning Susan was admitted to the ICU after dealing with severe respiratory distress.  Her breathing was really bad all night, and this morning her O2 saturation dropped into the 70s and her heart rate went very high.  She had been very confused and basically incoherent for several hours.  When this happened they took her straight to the ICU where she has been all day.  She’s been pretty sedated there all day with a more heavy-duty oxygen mask and some drugs to help her get more comfortable.  Our family is here.  We don’t know what God has in store but it is clear now that she will not be coming home.  The cancer has been so aggressive and is continuing to run rampant.  Weeks, days, we do not know.  We know, though, that it cannot take her heart, mind, and soul.  I came home tonight to talk with the kids.  They want to see her in the morning.  It is so difficult – I can’t even describe it – but it is clear that God is with them like Susan.

Pray for her, the kids, our family, me – for comfort, strength, healing, peace.

I’ll update tomorrow.  We love you all.

Jerel

Susan 12.28.10

December 28, 2010

This will probably be a short post because I keep staring at the screen trying to figure out how to say this, and I’m having trouble keeping my eyes open.  We met with Dr. Boyd this morning and asked him for his honest assessment of where Susan is, after two weeks now in the hospital.  He’s glad Susan has experienced some relief in back pain, and her blood pressure is down, but the reality is that the treatments she has been on have not worked and the scans show the cancer progressing in her lungs and liver.  We know it’s in her brain and bones too, likely progressing there as well.  He believes we are at a point where the risks of further chemotherapy outweigh any benefit she would receive, by a lot.  There’s a risk of bone marrow toxicity and more chemo could effectively poison her.  In terms of systemic treatment, we seem to be at the end of the line.  This did not come as a surprise to us, but it definitely is tough to hear the doctor say it.

That leaves us managing symptoms, helping her be comfortable, and making some big decisions over the next few days.  Susan will continue her radiation treatments in the hopes that some function returns to her throat and vocal cords.  Looks like this will conclude on Thursday.  At that point we will know more about the road ahead for her.

We do believe God can do whatever He chooses to do, and if He wants to heal her He will.  We’re also deeply saddened at the way things have gone.  Susan has fought with absolutely everything she has, and will continue to as long as she can.

I’ll keep you posted on what develops over the next few days, as our plans take shape.  Thanks for all of your love.

Jerel

Hospital Day 15

December 27, 2010

Today brought more news that we suspected but didn’t want to hear – Susan has pneumonia in some areas of her lungs.  This is aspiration pneumonia, which comes from her own secretions and saliva that have traveled down her trachea.  Since her throat is not functioning properly, she hasn’t had a good cough reflex.  Having a cough is a really good thing, it’s our own safety mechanism.  Since the cancer has pressed against the nerves that control her swallowing and vocal cords, she hasn’t had the protection of being able to cough.  So some fluid has made its way down into her lungs.  They have adjusted her antibiotics – she’s now on three that cover a broad spectrum and are what they typically use with pneumonia that comes on in a hospital.  The pulmonologist is hopeful they can get it under control, but was also clear that this will continue to happen unless some function returns to her throat.

We are trying to remain hopeful here but this is another blow that we didn’t want to see happen.  She has so little strength right now, and although I believe she has the will and spirit for the fight still, we need to pray that she has the physical stamina for it.  The spirit is willing but the flesh is weak, right?  I want to be able to talk with her, to hear how she’s really doing, to work our way through this like so many other things we’ve been through, to get on the other side of this together…which is why it’s so hard when she can’t talk and has painkillers sedating her.  In some ways she is in her own world right now, and I am praying that she is finding peace and hope there.

Dr. Boyd will (finally) be back in the morning.  I’m looking forward to his assessment of the last 1 1/2 weeks and what he says about where we go from here.  Today marks the two-week point of this hospital stay.  It has seemed like two months.

The main thing you can do is continue to pray.  Pray specifically for:

-wisdom for Susan, me, Dr. Boyd, and the nursing staff

-healing from the pneumonia and that her throat would begin to work

-peace for all of us

We love you all.  Thanks for continuing to join us in this battle.  Praying puts you on the front lines with us and we are grateful for that.

Hero of the Day

When we start to get to our circle of friends, there are soooo many who are heroes to us.  All of you are.  Today a special shout-out goes to Christy Manahan as our hero of the day.  She and Susan got to know each other well doing school committee stuff for the PTA and Susan has enjoyed all the time she’s spent with her.  Christy has gone out of her way to help our family, with food, taking the kids, loaning us her van for a whirlwind day trip to Chapel Hill, being one of the point organizers for the Supporting Susan event, cooking us Christmas food along with our great friend Armella, and much more…she, Mike, and the Manahan clan have been awesome.  And for that, Christy, you are our Hero of the Day.

12-26 Update

December 26, 2010

Hi Friends and Family–

Thanks so much to all of you who tune in to Susan’s blog updates.  Your constant encouragement and interest means a lot to us and our family.  Susan’s had a more uneventful day today, but is still struggling with her breathing.  Yesterday was a long day of respiratory teams and breathing treatments.  They feel like she has clear airways and is not in any distress, but it’s still hard when you feel like you can’t breathe well and there is rattling going on.  And there is a lot of rattling in her throat and chest.  She’s sleeping half sitting up right now and each breath sounds like a congested rattle.  But her oxygen level is good, and she is actually sleeping.

They believe it could be due to the radiation she’s receiving at the base of her skull.  Radiation can cause mucus linings to get irritated.  We are going to keep a close watch on it, because it has gotten significantly worse yesterday and today.

We’ll see the doc bright and early in the morning, and (so far) the only thing on the docket tomorrow is a radiation appointment.  Six more of those.  We’re hoping to see some results from those this week.  Her vocal chords are not functioning right now, and still no swallowing improvement.  Our regular oncologist, Dr Boyd, gets back on Tuesday.  It’s been awhile since we’ve seen him and I’m looking forward to his assessment and where he sees this going.

I guess we are all adaptable as humans to our environment, and spending so much time in the hospital, you get used to it to a degree.  (A cafeteria lady tonight asked me if I worked here.  I said “uh, no, I’m just trying to get out of here” or something like that)  But I’m also constantly reminded of how scary this all is.  Whether it’s the next scan, bloodwork report, O2 reading, doctor’s visit, or (like right now) the next breath I hear, the prospect of bad news is always right around the corner.  I’m not trying to depress you, it’s just that I can’t remember the last bit of good news we have had with Susan.  And that is scary for us.  It’s not how we envisioned life, and it’s not anything you adapt to.  (At least, I haven’t yet)

I am continually proud of Susan.  She is facing a really difficult battle right now with such grace.  She is tired, though.  It’s hard to watch this cancer take away so many things from her, us, from her family.  I am reminded, though, that it can’t take away her spirit, her heart, her faith.  Those are the places where cancer cannot win.  A tumor can’t grow on her soul.  This thing really is from the devil, you know.  I’m convinced of that.  And the Bible tells us not to fear what can harm the body, but not the soul.

So we will try to cling to that truth, and in the meantime pray for strength and encouragement for her.

Hero of the Day

I guess I’ll be keeping this segment around for awhile, considering all the good feedback I’m getting.  I hate to have a “blanket” HOD today, but since it’s so hard to pick just one, today’s Hero(es) of the Day are Oncology Nurses.  We have met some amazing nurses at the hospital these last days, as well as in all the doctors’ offices we’ve been in.  There are so many of these angels out there taking care of patients.  Susan has had some terrific nurses who know so much about how to help cancer patients deal with stuff like chemotherapy, radiation, pain meds, high blood pressure, and the list could go on and on.  They carry out the doctor’s orders and also take orders from the patients (and their spouses, mothers, and sisters sometimes too!).  They are patient and helpful.  Some of them that I know even read this blog!  So here’s a shout out to (and I’m sure I will forget someone, sorry!) – Kim, Helen, DeLois, Janet, Linda, Mary, Jeanette, Jennifer, and Gloria.  WE LOVE YOU – it seriously takes a certain type of person to work in this kind of environment, and that’s why you are our Heroes of the Day.

Christmas Day at Presby

December 25, 2010

Hi Friends –

The kids and I got to the hospital last night about 8pm, after a full day of a church service, packing up the car, getting the kids’ gear and clothes ready, and seeing family and eating at the grandparent’s house.  Of course, during the day Luke developed a cough that got worse and wasn’t feeling great.  So by the time we spent a few minutes with Susan on Christmas Eve, the kids (and I) were ready for bed.  Not before Susan gave them a present from her, though – Pillow Pets!  I can’t believe how excited they were about these, but they love them.  It’s a pillow…it’s a pet…it’s a pillow pet.  I spent most of the night trying to calm the kids down and keep Luke from coughing directly into my face in our “cozy” room.  Since we were all up until almost midnight, we actually slept til 8:15.  Aunt Dana was there all night, staying with Susan, and earlier in the evening while she watched the kids I got 5 big trash bags full of presents from the car into her room.  That’s when I had my first “what are we thinking?” moment.  But we were pretty much committed at that point.

We got up and called over to Susan’s room but the doc was in her room and she had begun to have some breathing issues that she was trying to work through, so I took the kids to the cafeteria for breakfast instead.  The hospital gave us meal cards for the kids, and we had lots of bacon, eggs, and cereal.  Let me just say it is such a weird feeling being at a hospital on Christmas eve and day.  Very surreal.

We went to find out what Santa left (in Susan’s room) at about 9:30 and the kids of course went crazy.  That’s fun to see – it doesn’t matter where they are, they still have the same excitement and fun.  They tore through their presents fast (usually we make them go slow and watch what each other opens, but Susan wasn’t feeling great so we needed to move things along).  After an hour and a half or so Susan was getting tired and the kids were getting just a bit wild, so we decided to call it a day.  I’d say we did as well as we could, given the circumstances.  It worked, and it will be something to remember, and honestly something I never want to have to do again.

Susan had a rough day.  She has an extreme amount of congestion/phlegm in her throat that the respiratory folks are having a hard time getting rid of.  When you can’t swallow, the mucus and saliva you create tends to just stay there, and it’s hard for her to get it up.  She had more trouble with this today than she’s had in the past, and we’re trying to figure out what’s causing it.  The thought right now is that it may be radiation treatments that are affecting her throat in this way, causing some swelling and aggravation.  Unfortunately, it’s something she may have to learn to deal with while radiation treatments continue. (6 more days of these)  I am glad to report though that tonight she is more comfortable and resting.

Please pray for her for strength right now.  A day like this takes a lot out of you, especially given everything she’s already been through.  I know it’s so difficult for her to stay positive and encouraged and strong.  I’m praying she wakes up feeling much better and not as worried.  Her anxiety level today was very high.

Hero of the Day

Today is another easy pick – Martha Bailey, Susan’s mom.  Pages could be written here, but let’s just say she has given Susan so much strength and support over the past three years, and me, and our family…it is really remarkable.  I can’t tell you how many times she’s been at an appointment, or watched the kids, or brought groceries, meals, driven us places, you name it.  I wouldn’t be surprised if her picture is in the dictionary beside the word “servanthood”.  And for that reason, Martha is our Hero of the Day!

I’ll let you know how Susan’s doing tomorrow.  Merry Christmas to all of you wonderful people, and thanks for keeping up with us.

 

Jerel

A Short Christmas Eve Eve Post

December 23, 2010

Hi Friends – Susan had another pretty good day and seems to be pretty stable.  Two radiation treatments today, and an X-ray to see if there is fluid gathering on the left side of her lung.  Not sure of the results of that yet, but if it is significant then she will have another thoracentesis to drain the fluid.  She still cannot talk.  This is obviously a source of frustration for her.  Pray that her throat and vocal chords begin working again.  We haven’t seen any progress there yet, but it is still early.

The hospital has been great about helping us with Christmas.  They are providing an extra room for the the kids and me to sleep in tomorrow night.  The kids actually seem pretty excited about being there…kind of an adventure.  Just trying to remember that it’s about being together, wherever we are.

Hero of the Day

Obvious choice but needs to be said – our hero of the day is Susan’s sister Dana.  She may get the hero of the year award.  I can’t remember how many times now she has flown back and forth from Hawaii to here to see about her sister and help our family out.  She takes care of Susan so well, the kids love her, and she does so many things to keep the house running, all without complaining.   She and I trade off a lot between the hospital and the kids.  I don’t know what we’d do without her right now.  That’s why she’s our Hero of the Day.

 

Susan 12/22

December 22, 2010

Susan has had a really good day.  They adjusted the way they were doing her pain meds a few days ago, and after another adjustment yesterday, she seems to be holding steady in a good place.  It is such a balancing act – you want to be not too medicated but not too much pain.  I would say it’s more art than science, but well, you know…there is a lot of science going on.  Let’s just say everyone’s different, and it takes someone managing that aspect of her treatment closely to get it right.  Dr. Kraig Russell is that guy – he’s in charge of all of her pain management, and has done a great job getting her to a better spot.  So her alertness level has increased a ton lately.

The only treatment she had today (or has scheduled anytime in the future at this point) was radiation to her back and brain.  Last day to her back is tomorrow (she’s had a great response here) – and she’ll have about 7 more days to the brain.  That will be a slower process we are told.

She still cannot talk, only whisper.  So she’s writing a lot.  We actually figured out today how to use the iPad with my laptop as an external monitor, so that she can type while someone else (like a doctor or nurse) holds it and reads what she’s saying.  I know, pretty cool and geeky at the same time, right?

The kids got to come by this morning and spend some time with her.  It was a good visit and felt at least for a few minutes like we were all just sitting around the house hanging out.  They were telling her about school and parties and neighborhood stuff…the usual.  My brother and sister-in-law and cousins are in town and doing all kinds of fun stuff with the kids, so they are pretty busy and having fun.

It is clear at this point that we will be spending Christmas at the hospital.  Sad, but true.  Right now we are working on a plan that would involve the kids spending the night at the hospital in a room, and Santa visiting Susan’s room while they are asleep.  I think if we approach it the right way, it could actually be fun.  We’ll figure that all out tomorrow.  It would definitely make for a Christmas to remember.

Hero of the Day

I’m going to try out a new thing here, and have a “hero of the day” section.  Hopefully I’ll remember to carry it into tomorrow…there are just so many people around who have done amazing things for us.  Probably won’t ever be able to get to them all, but I thought I’d try to highlight one of them in every post.  Last week Susan was having a hard time with her platelet count.  This was hampering a particular procedure with a long needle.  They won’t stick you if you are sub 50,000.  No one wants to get stuck with a big needle, but in this case she needed it done.  The regular OTC platelets weren’t doing the job.  Her body was zap-frying them as soon as they came in, treating them like enemy hostiles.  Susan’s brother Brian offered to donate his, and Dr Boyd, our oncologist, thought it was a great idea, since siblings are likely to be great matches for donor blood.  Brian zipped over to the Red Cross (with a rX from Boyd) and gave directed platelets, about 3 bags worth.  (He was all shriveled up like a prune when he was done)  They were able to finally give them to her yesterday, and her count soared from 35K to 102K!  This is a massive jump.  It’s pretty cool to see a brother give his little sister his own platelets….and for that reason, Brian is our “Hero of the Day”!

There are many more heroes out there that shall be named.  Each of you is one for reading and praying along with us.  More to come tomorrow.

 

Susan Update 12/21

December 21, 2010

Gotta figure out how to come up with more creative titles for these posts…anyway…

Thanks for continuing to read.  We really are encouraged by so many people reading, praying, and sending us messages, from all over the world now.  It is clear to me that God is using Susan to touch a lot of people, so we are glad something good is coming of this.

Not a lot to report so far today.  She had a pretty uneventful night.  They adjusted her pain meds yesterday to a continuous infusion which so far has been a good thing.  I think she’s a little more lucid and not a lot of severe pain breakthrough.  She had radiation treatment this afternoon on her brain and back.  We have seen a little improvement in her back pain.  We’re only two days in to the brain radiation, so nothing to report there yet.  Martha, her mom, is going to stay with her tonight, and I’ll be at home with the kids.  I’ll miss being there, but I won’t do much good if I don’t get a good night’s sleep here pretty soon, so I’ll take advantage of that tonight, and be back at it tomorrow with Susan.

A good friend of ours who’s also a doc saw her a few days ago in the hospital and told her “I’ve never seen you look more beautiful than right now.”  She rolled her eyes at him sarcastically (and knowing her, I know she was thinking “Seriously?  You’ve never seen me look more beautiful than THIS?”)  But I could not agree more with my friend Chris.  She has this peaceful, radiant glow in her eyes and face that is just amazing.  She is experiencing something deeper right now, beyond all the pain and IVs and needles…this has been a HUGE source of encouragement and comfort to me and our family.

There’s a story in the Bible that right after Jesus was born, his parents took him to the Jewish temple to be dedicated.  There was a man there named Simeon, an old prophet who had been told some time before by God that he would not die until he saw the Savior with his own eyes.  When Mary and Joseph brought Jesus to the temple (I think he was 8 days old) Simeon took the boy in his arms and said “Sovereign Lord, as you have promised, you now dismiss your servant in peace.  For my eyes have seen your salvation, which you have prepared in the sight of all people, a light for revelation to the Gentiles and for glory to your people Israel.”  (Luke 2:29-32)

We still have hope that Susan can be healed and pull through.  But I have thought about this passage a lot lately, because I believe that same kind of satisfaction and peace Simeon had, once he held the Christ child, is the kind of peace (maybe the right word is satisfaction) that Susan has.  I know I run the risk of making this a Christian cliche and sounding like this is a flat, Sunday-School type response.  But seriously – this is real stuff that I am seeing first-hand.  She is in a place where she desperately wants to be healed, but at the same time is satisfied in her heart and at peace, knowing that “…my eyes have seen your salvation.”

Whatever happens, I pray that I can experience that kind of peace and satisfaction, that Susan is experiencing, knowing that there are many things I may want, but only one thing I really need.

Sending much love to you from Susan and me – through Christ–

 

Jerel