Ups and Downs of the Week

Hi Everyone-

 

Have been meaning to get to the blog for a couple of days now, so without further delay, here's the latest.

 

Brooke is generally doing well, though it's been a week full of ups and downs.  The good news is that she is recovering from her surgery, everything seems on track, people have been very helpful and thoughtful, and the Lord has been mindful of her.  On the flip side, she has been in quite a bit of pain, is still hurting and uncomfortable, and at times has felt pretty overwhelmed by the whole thing emotionally. 

 

On Wednesday, Brooke had her first follow up visit with the surgeon.  Everything looked good and the surgeon gave her a good report.  There was no indication of infection or problems with bleeding -- two things they were concerned about and watching closely.

 

The medicine in the pain infusion pump was gone so the surgeon removed the tube.  The tube was inserted in the middle of her stomach, but as he removed it, Brooke said it felt like the tube was being pulled inside of her from somewhere up around her left shoulder.  The surgeon said that was exactly where he had placed it, so that was in fact what she was feeling. She said it wasn't really painful, but a pretty uncomfortable sensation.

Brooke was really happy to get rid of that tube and not have to carry around the bag with the pump in it.  It felt to her like one thing she could check off her list, not have to worry about ever again, and move on.

On the other hand, we had originally thought that the two drains that are connected through tubes in her side would only be in for a few days, but found out she'll have to have those for 5 - 6 weeks.  She has to pin the drains to whatever she is wearing, and the tubes keep her from being able to lay or sleep on her side at all.  The drainage itself has slowed down a lot so we don't have to empty them nearly as often.

 

We got a little more information this week as far as plans for chemotherapy.  One of the unknowns has been where Brooke would get chemo.  American Fork hospital has a cancer center where they administer chemo, but Brooke has been seeing Dr. Prystas, an oncologist at LDS hospital, for her follow up visits for many years now.  

 

When Brooke had cancer in 1998, there was no treatment available in Am. Fork so she had it done in Provo.  Soon after that though, she switched to Dr. Prystas and has been going annually to SLC for checks ever since.  We have a longstanding relationship with Dr. Prystas and are quite comfortable with her, so, all things being equal, would prefer to stay with her, but her practice is at LDS hospital.  A once a year trip to SLC for follow up was no big deal, but trips there every three weeks for a year sound like a lot, particularly now that we have another option that is only a few minutes away.

So I called to see if Brooke could have chemo done here in American Fork, but still have Dr. Prystas be her oncologist.  The immediate answer was no -- either Brooke would have to go to LDS for chemo or switch doctors to have it here in Am. Fork.  After a little more digging though, Dr. Prystas office called back with more specifics about Brooke's chemo treatments and an option about how to do it that Brooke is now thinking over.

We were told that Brooke will need six chemo treatments spaced three weeks apart, and will need infusions of another drug, herceptin, every three weeks for a year.  One possibility is that Brooke would have the six chemo treatments done at Dr. Prystas' office in Salt Lake, but could then have the rest of the year's treatments done here in American Fork.  Brooke hasn't decided yet exactly what she'll do, but it looks like she'll have to either go with this proposal or find a new oncologist.  Either way, we're going to start with a visit to Dr. Prystas first and then make a decision.

As of sometime yesterday (Friday), Brooke stopped taking the heavy duty pain medicine and is now just taking ibuprofen.  That's been a big step for her.  She's obviously more alert and "with it" now than she has been for much of the week.  Anyone who's taken those pain meds knows how muddled you feel -- not fun.  So, we're glad that she's moved on from those.  As I mentioned earlier, she still has quite a bit of pain and discomfort, but she's generally dealing with it pretty well.

This was actually the second time she tried to transition off the pain meds to ibuprofen this week.  She had finished one prescription Wednesday night and thought she was ready to move on.  After going without the pain meds and just with ibuprofen Wednesday night, it was clearly too early.  She was in way too much pain, so we filled another prescription Thursday morning and kept her on that until Friday when she was able to successfully move on.

The more difficult part of that premature medication change though, was mental and emotional.  As her mind became clear and free from the meds, it was also the first time she really had to face what had happened and it was quite overwhelming for her.  Thursday morning was the most difficult time yet for her since being diagnosed, as she was both physically in great pain, but also emotionally hurting even more.

As I said, we got a new prescription which helped with the pain, but I wanted to mention a tender mercy that helped Brooke through the emotional struggle of the day.  Brooke was in the hospital for General Conference weekend and of course, had the television on for all the sessions.  I don't think she was conscious for much of it though.

On Thursday when she was at her lowest point physically and especially emotionally, she started having a tune go through her mind.  She wasn't even sure what it was at first, but the music kept coming to her.  Eventually she starting remembering the first line in the song:  "Does the Journey Seem Long?"  The Tabernacle Choir had performed the song during the Sunday morning session. Kelsie helped Brooke look up the song and she listened to it several times.  You can listen to it here if you'd like.

It's a song that's actually in the current hymnbook (no. 127), though I don't remember ever having heard it or singing it in church.  It's written by Joseph Fielding Smith.  Here are the lyrics:

1. Does the journey seem long,

The path rugged and steep?

Are there briars and thorns on the way?

Do sharp stones cut your feet

As you struggle to rise

To the heights thru the heat of the day?

2. Is your heart faint and sad,

Your soul weary within,

As you toil ’neath your burden of care?

Does the load heavy seem

You are forced now to lift?

Is there no one your burden to share?

3. Let your heart be not faint

Now the journey’s begun;

There is One who still beckons to you.

So look upward in joy

And take hold of his hand;

He will lead you to heights that are new—

4. A land holy and pure,

Where all trouble doth end,

And your life shall be free from all sin,

Where no tears shall be shed,

For no sorrows remain.

Take his hand and with him enter in.

The message and spirit of the song were a huge blessing to Brooke and helped her regain a measure of peace.  She has listened to it several times since, and I'm sure she will listen to it many times yet in the coming year.  The message about looking to Christ in our trials is a message that resonates with Brooke, and one she believes because she has experienced it, just as any of us can as we turn to Him.  It was exactly the Balm of Gilead that she needed, and that all of us need from time to time.

God bless you all for your kind deeds, thoughts, and prayers.

- John