In Sickness and in Health

Battling cancer with love, medicine, and the Giver of both.

Peace and Contentment

Oh my!  I am a VERY HAPPY WOMAN!  I had a marvelous night of sleep, probably one of the best in a week.  My itching is completely gone.  No more hot feet.  I can’t describe the bliss after a whole week of wrestling with it.  It’s simply amazing to just be comfortable again.

We had an early morning because of a glitch but I think things are ironed out for now.

My nurse came in to draw blood from my chest port.  They just stop the chemo for a bit and take what they need.  She could not get blood return.  She tried and tried.  I’ve had some problem with this before but never to this extent.  The way I understand it is that there’s a little clot that can form in the line somewhere.  It can be pushed back and fluids given and all goes well.  But when they try to pull back on the blood, that little clot blocks the line and won’t release.  About three different nurses tried but to no avail.  They put me in all different positions but nothing worked.

So…they had to put ATP in my line which is an anti-clotting drug to break it up.  But before they could do that, they had to start an IV and switch my chemo drip into my arm instead of my chest port.  They then put in the anti-clotting drug and waited half an hour.  But to no avail.  I was getting a bit restless.  After another half hour, my line filled with wonderful red blood.  We let out whoops of joy! 🙂  So now the chemo is hooked back into the main line and hopefully all is well.

I’m feeling pretty tired.  Probably catching up on sleep.  So I think I’ll go try a snooze.

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Update from Josh:

Time for a picture. She actually enjoyed the breakfast

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Guest Blog

Recently we received an e-mail from Cameron Von St. James who offered to write a guest blog for us, drawing from his experience as a caregiver for his cancer-stricken wife. We offer the article here for your interest and consideration. While we have never met Cameron and Heather personally, we are honored by their solidarity. Their story is an example of gritty resolve as evidenced by the line about not succumbing to fear and anger. Follow their story further at the Mesothelioma Cancer Alliance Blog.

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Embrace the Help From Others In Darkest Times

My wife Heather was diagnosed with cancer known as malignant pleural mesothelioma on November 21, 2005, a day I will always remember. I was suddenly her unprepared caregiver. Just three months earlier we became new parents to our daughter Lily and should now be filled with holiday joy as we prepare for her first Christmas.  Instead, our life was filled with turmoil and uncertainty.

My role as caregiver began the moment that Heather was diagnosed.  We were given some information on mesothelioma and the available treatment options.  The best option presented to us was a mesothelioma specialist named Dr. David Sugarbaker in Boston. While my wife sat in shock with all the news, I knew we had to get to Boston.

From that moment, life for us became extremely hectic.  Heather was no longer working and I continued to work part time.  We had been going back and forth with doctor visits, travel arrangements and plans to Boston while also caring for Lily and trying to stay afloat financially.  It all became so overwhelming with the to-do list and facing the fears of losing my wife to cancer, all our possessions and being a widower and single dad.  As these feelings absorbed me, I often found myself breaking down in tears, although never in front of Heather.  She needed me to be her strength and support, and I never wanted her to see me in my moments of weakness.

We were blessed to have our family and so many friends surround us in our time of need.  We can never express our gratefulness for all the comforting words, support and even financial aid that we received from our community. Anyone going through cancer should be thankful and accepting of any help at such a difficult time.  When people are there for you, it helps to lighten your burden in some little way, so embrace and accept it.  I learned the hard way that there is no room for pride during a cancer battle.  Even the smallest offer of help can be an enormous burden off your shoulders.



Being a caregiver to a loved one carries with it a lot of stress and chaos and requires your full commitment. It may be difficult but I had to learn to be strong and not succumb to fear and anger. There were a lot of ups and downs but I had to remember to keep the hope and use any resources available.

After Heather recovered through mesothelioma surgery, chemotherapy and radiation, she beat the odds and this horrible disease.  Now seven years later, my wife is cancer-free.  Through it all, I have learned that I can endure more than I thought I could.  Time can never be taken for granted. Two years later I was again working full time while caring for Lily and Heather.  I was also fortunate to return to school to study Information Technology and make a good life for my family.



I was privileged to graduate with honors and be the speaker for the class.  In my speech, I remember expressing that I would have never predicted where I would be in 5 years after a cancer diagnosis, standing on that stage, and Heather cancer-free.  I learned to believe in myself and never give up hope.  We truly have been blessed and capable of accomplishing so much in our lives.  Heather and Lily were in the audience to cheer me on, and that was the greatest reward of all.

– Cameron Von St. James

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ICE and ice packs

Feeling a bit blurry after a night spent more awake than asleep.

Who knows what all the factors were that contributed but one big one was hot feet.  Josh rubbed and scratched and applied cool and wet paper towels but still my feet refused to cool.  And when they’re hot, they’re itchy.  I’ve had some difficulty with this in the past but never this bad.  It comes from the steroids and lymphoma as far as I can tell.  Finally at about 11:30 after I had slept some but was still miserable, we asked for an ice pack.  They brought in two and wrapped up my feet.  I had that on all night, sleeping fitfully off and on even with two different sleeping aids.  At about 5:00 in the morning, I felt my feet significantly cooler and more comfortable.  Praise the Lord!  At about the same time, my itching seemed to subside and the world was just a better place.  So far I can sit here in comfort.  Oh I just can’t stop being thankful for that!  I hope that is the end of Mr. Big Bad Itch.  Please Jesus.

Otherwise, things are sailing along.  I was able to start my first round of chemo yesterday afternoon, so will be receiving more this afternoon.  Currently, I’m just on a bunch of saline to prep me for the chemo and get my symptom flushed and ready.  I declare, I had to go to the bathroom every half hour last night.  They’ve given me so much fluid.  That was another non-sleeping factor.

Sometimes in my misery, I lie there and wonder what a ‘normal’ life be like again?  We are beginning to wonder if we still remember.  It feels elusive and distant.  Then I wonder, “Is there ever a normalcy in this broken world…for anyone?”  When I get even tiny glimpses of goodness through the suffering, I think it just might be worth it.  Other times I think, “It would take a honkin’ big dosage of redemption and goodness to make up for everything.”  If I weren’t in the hands of a big good God, nothing would be worth it.

So for now, we take one baby step at a time.  One day at a time.  One moment at a time.  And we thank God for the relief He does bring!

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As a side note, we found out from Dr. Beitinjaneh yesterday that this ICE treatment will be repeated a third time right before they harvest my stem cells for the transplant.  This makes sense to me; we just were not expecting it.  Like we had mentioned earlier, they want to do a PET about two weeks after this treatment just to see what the cancer is doing.  If all is well, they will continue with arrangements for the transplant.  They want to give me a treatment right before harvesting to ensure that as many cancer cells as possible are dead.  Otherwise there is risk of harvesting them and they’d be put right back in me.  God forbid!

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Admitted

We are here. Eight floors up on a beautiful, 70-degree day. Thankfully, Jean’s itch is bearable so far. The first chemo drug is hooked up and dripping. We are starting earlier than last time, so hopefully that translates into an early release. Thursday evening would be the earliest from what I can tell.

I’ll try to update throughout our stay. Thanks for praying. Life is a bit brighter than it was last evening.

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Schedule change

It seems like the rare moments of relief are surrounded by hours of torture.

The itch refuses to leave. Today Jean was back on some steroids, but they only take off a small edge. After updating our doctor, he decided to begin the second round of the ICE chemo tomorrow instead of Thursday. We are grateful for this flexibility. I don’t know if Jean could handle one more day of this relentless misery. She is taking a significant beating through it all–physical and emotional. I admire her grit, but even grit has limits. How far can one bend without breaking? We can only hope God knows the answer and intervenes before it happens. Until then we beg, demand, cry, shout, and plead.

Before we leave we will need to take off what hair she has left. Over the past several days she has been losing an increased amount; now it has loosened to the point of being unmanageable. I offered to do a sympathy shave for her again, but she would rather have me looking as normal as possible. Might as well cling to whatever shreds of normality we have left.

Pray for relief. Pray for healing. Pray for endurance. Pray for faith.

Plodding on…

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May the God of all Sleep be Praised!

I’m not being sacriligious either.

Friday night was about just as bad for me as Thursday.  I had not mentioned that we are in PA this weekend, so it’s been tough to order any pharmacy help with being away from doctors.  At any rate, my little over-the-counter ‘hopefully better’ sleeping pill Friday night did NOT shut me down (well, it went off duty after about two hours).  I had taken the largest dosage of steroids that day which I’m sure contributed.  And I was still itching so I decided, “That’s enough!  I’ve given these things a good try and I’m not gonna keep torturing myself.”  I eased way back yesterday.

Through circumstances I realized a family member had the exact prescription sleeping pill I longed for.  (The one that my doctors couldn’t legally call in simply because I was out of state).  I never encourage stupid or illegal action…well, rarely!  But I decided it was a sin to be sleeping 3 hour nights and I was desperate.  I had been holding up alright the last couple of days but didn’t think I could sustain that too long.

I was dog tired crawling into bed last night and it did not take long to drop off with my new magic pill.  I was getting used to waking at 1:00 to be tortured with itch and insomnia.  So when I woke this morning and asked my husband what time it was, I nearly fell out of bed when he said 6:00.  I dissolved into thanksgiving.  You mean I actually slept a solid 7 hours?  May God be praised!  I think the angels probably thought I had taken a few too many drugs with my little praise session.  I was too excited to sleep anymore, so here I am telling about His goodness.

I am learning that God always comes through in some way at some point, small or profound.  Yes, I’m still sitting here scratching, but I’m a happy woman, ’cause He answered at least one prayer with relief.  Thank-you for talking to Him about me!

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Insatiable Itching

I know so many of you are praying for me.  Thank-you so much!  So I hate to ask for more but I have a very specific request.

This itching has not let up for me.  I am on two anti-itch medications plus I have multiple creams.  I am confused about why things don’t seem to be working because the last time I had itching the steroids cleared it right up.  My one doctor is urging me to up the steroids but I wonder if he truly understands the side effects.  I think I’m gonna try the full dose today because the itching is driving me nuts.

Last night I got a total of maybe three hours of sleep.  I really would rather not spend another night like that.  The steroids give energy so most of the night I was not really frustrated.  I spent it trying everything in the book.  Anything from putting on different lotions, bathing in cold water to slow down circulation and hopefully itch, eating and trying to satiate this hunger :), or reading my Bible and praying.  Begging the Lord for relief.

I’ll try a different sleeping pill tonight and see if I can find something to knock me out good and proper.  Wow!  I don’t know.  Please pray.  The doctor said this itching probably won’t let up until the next treatment (next week).

Other than that, I’m doing good.  I do have much to be grateful for!

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My Heart is Heavy

Thank-you to all of you who prayed about my headaches.  I woke yesterday morning (Tuesday) and was delighted to realize I no longer had headaches or achy eyes.  Praise the Lord!  I felt so much better.  On the heels of that though (or actually the evening before) I again started with some itchiness.  GRRRR!  I thought that was supposed to stop after treatments.  At any rate it means I’m back again on steroids…YIPPEE!  So now I have my nice pink steroid cheeks back and I feel like eating the house down.  Which means I’m back to my bloating and record breaking burping.  Groan.

Today I had the wonderful privilege of going out for lunch with my nurse, Lois.  My mom is here so she also accompanied us and we had a delightful time.

I really enjoy my nurse and particularly in a more casual atmosphere.  We graced Chik-fil-a with our presence. 🙂

I thoroughly enjoyed our time but I must say I was shocked with some news and cannot get it out of my mind.

There was a 24-year-old single gal who I saw several times last fall while receiving my own treatments.  She had a rare case of blood cancer and was receiving infusions, etc. from the same infusion center I used.  I heard she was preparing for a stem-cell transplant at John’s Hopkins.  She was always VERY upbeat and seemed like a delightful lady.  Even though I interacted with her very little she left a big impression on me.

The day of my last treatment, Oct. 1st, the nurses were also saying goodbye to Ashleigh.  She was planning her trip to John’s Hopkins.  I remember the nurses gave her a wonderful box and promised to visit her.

I thought about Ashleigh a lot after that and wondered how awful it must be to stay in a hospital for a whole month and have to do a transplant. (Well, here I am.  But at the time I never anticipated my life would hold the same).  I’ve prayed for her and wondered how her time there went.

So…today I asked my nurse, “Don’t say anything you can’t about this patient, but how is Ashleigh?”  She gave me this weird look and didn’t answer right away.  I knew what must be coming and my heart sank.  She told me Ashleigh did not make it.  Oh, I cannot describe the feelings that put within my heart.  “What do you mean?” I wanted to scream.  She looked perfectly healthy when she was in here.  She couldn’t be gone already.

I asked questions and learned that she had had a liver transplant at a young age.  At the time of her death she had been through the stem cell transplant and survived fine.  She had been released from the hospital but soon thereafter her liver failed her.  For what reason I do not know.  I do not know if it was even connected to the transplant.  All I know is she’s gone.  And my heart is so incredibly heavy and sad.

She died during the time we were admitted to UVA for my chemo just two weeks ago.

This has shocked me in two different ways:

1. I just saw this woman last fall and she looked so good (one of the nurses has since told me, “Yes, but she could fake it and hide it well.”  So she must not have been as good as she appeared).  That didn’t change the shock of her death to me.  She was still too young to die.  It gave me a weird feeling to have just seen her.

2. I’m about ready to enter this same procedure and it scares me.  Like I said, her death may not have been connected with her transplant.  I recognize that she had liver complications.  But still, this is a rigorous procedure and it doesn’t make me excited.  Oh God, give me courage!

I don’t know…I just want to cry for this woman and for all she must have faced!  I cannot get her out of my mind.

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(Naomi, I remember very distinctly that she was at the infusion center when you and the trio sang.  That does console me somewhat and warms my heart).

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Pain

Well, life moves on.  The last couple of days have not been stellar but I’m surviving.

I was having significant bone pain yesterday and today from my neulasta shot.  I was very grateful it was working and hoped it meant my counts were climbing back up.  The gratefulness sorta diminished as the pain intensified last evening.  I had to stay on pain killers throughout the night and into today.  Thankfully, it’s not nearly as intense now.  My blood work today showed my counts on the high end of normal.  No wonder I was in pain.  Last Friday counts were low and now they’re up to or above normal.  That’s a lot of stress on the bone marrow.

I’ve also been fighting headaches off and on.  Fortunately my cough has diminished because every time I do have to cough, my head just aches.  My eyes were achy this morning as well.  I don’t know if I have a touch of the flu or if it’s just side effects from chemo.  Thankfully I have no fever.

Oh well, enough complaining.  I need to just live the life I am assigned right now.  I’m learning that a person can learn to deal with pain, but we will never be used to it.  It’s part of the brokenness of this world and we weren’t meant for it.  Hmmm….I think some people look at pain as a gift or something like that.  You’re allowed to disagree with me.  I think it’s part of the curse.  That doesn’t mean God can’t redeem it.  It does mean that I won’t call it a good thing. 🙂  Just like I don’t call cancer a good thing even though God has brought a lot of good from it.  (The exception here would be that pain indicates something is wrong and is very helpful in that way.  However, it’s just that…an indication that something is wrong…and therefore I see it as part of the brokenness of this world) Have I thoroughly muddied the waters?

 

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Words of Life

Listen to this beautiful passage of Scripture and let it speak to you wherever you are at in your own journey:

 

Psalm 16:1-2, 5-11

“Keep me safe, my God,

for in you I take refuge.

I say to the Lord, ‘You are my Lord;

apart from you I have no good thing.’

Lord, you have assigned me my portion and my cup;

you have made my lot secure.

The boundary lines have fallen for me in pleasant places;

surely I have a delightful inheritance.

I will praise the Lord, who counsels me;

even at night my heart instructs me.

I keep my eyes always on the Lord.

With him at my right hand, I will not be shaken.

Therefore my heart is glad and my tongue rejoices;

my body also will rest secure,

because you will not abandon me to the realm of the dead,

nor will you let your faithful one see decay.

You make known to me the path of life;

you will fill me with joy in your presence,

with eternal pleasures at your right hand.”

 

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