A Tweet from John Piper

"Practical help for unbelievers without a LONGING and INTENT that it lead to relief from everlasting suffering is not love."

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My mom woke up this morning with a sharp pain in the right shoulder blade region which she had not had before. She had an x-ray and saw her doctor, but there was no obvious cause for the pain. So I guess no news is good news.

Mom wants to know if she can delay chemo a few weeks so that she is able to enjoy feeling better for a while until the chemo drugs start to exert their side effects. I told her I wasn't sure how risky it would be to delay; her oncologist would probably have a better idea.

On my side of things, my CF nurse called back and they want to discontinue one of the meds in an effort to try to make me feel better. Now I'm not so sure what to do. I welcome the chance to feel better, but I want to hit this very serious new organism with all we have.

The nurse also mentioned that they will check a blood gas on Thursday because of my ankle swelling. Based on these results, they will then decide whether or not to give me some Lasix (water pill).

I did some more research on Mycobacterium abscessus today. It turns out that while unusual, it is not unheard of in CF patients. In fact, it is the most common type of mycobacterium to be isolated in CF patients. Typical regimens include multiple antibiotics such as the kind that I'm on. At one center the length of treatment was at least 12 months!

Plus, I read from one source that the organism is never really considered to have been eradicated or cured. The goal is just to keep it from destroying the lungs too much. Some have questioned whether or not new lungs would cure me of my infections. To a point. The old infected lungs will be taken away, but somehow the bacteria usually finds a way to remain with the patient or alternatively, it reinfects the patient.

"All things work together for good"

This is a popular verse printed on many bookmarks and coffee cups. It is found in Romans 8:28.

But as the context clearly shows and as the ESV Study Bible elucidates, "good" does not here refer to earthly comforts but rather to conformity to Christ, closer fellowship with God, bearing of good fruit, and final glorification (in heaven).

Here on earth it may not always seem so good. The passage lists many things that can happen even to Christians:

1. Tribulation

2. Distress

3. Persecution

4. Famine

5. Nakedness

6. Danger

7. Sword

"For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered." Psalm 44:22

Update: PICC line, colonoscopy, Mom, Iowa, work

My PICC line site has become a little red. I'll have to prayerfully watch it closely. If it does become infected, they'll have to pull the line and restart it someplace else. The only problem is that I'm running out of veins they can use. We only have 3 or 4 veins in each arm that can be used and several of mine are already too scarred.

I am officially registered to have my upper endoscopy and colonoscopy on July 15th at 10:00. Because of my extremely poor health, they are actually going to do it in the OR as opposed to the regular endoscopy suite. The thinking is that it will be easier to manage my airway in the OR.

Today the endoscopy nurse told me to my surprise that they were planning to use moderate sedation. And if this goes bad, then they will intubate me. I'm relieved somewhat because I didn't really want to do these procedures without sedation.

So I will go in on July 13th to the hospital where they will optimize my lung functions prior to the procedure. They also plan on giving me some IV fluids to make up for all that I will be losing in the bowel prep.

Mom is still feeling nauseated and she has mild to moderate pain at her incision site. She is basically homebound (as am I for the most part). Right now, Aunt Barb and Uncle Rick are staying with her. We really appreciate them as my mom understandably doesn't like to be alone when she's feeling this way.

I did some more checking into Iowa's program and shot off an email to their two transplant coordinators. There is also a general phone number I can call, and I will do this when I get the time...if I have any additional questions.

Today I told my colleagues at work that at a maximum, I could work until August 3rd which is when our new pathologist starts. I may not be able to hold out that long, however. We'll see.

The biggest challenges in not working is 1) losing the incentive to get up in the morning 2) losing, in part, a sense of purpose and 3) making sure I maintain health insurance. I will maintain health insurance of one type or another, but it's going to be pricey.

The two main reasons to no longer work are 1) I feel pretty cruddy and 2) even if I felt good, I have so many medications and treatments to work in along with doctor's visits and handling any complications that come up that it takes almost a full day just to do these things.

Philippians 4:13 is a familiar verse that states: "I can do all things through Christ who strengthens me." It's important to remember this during these times. Whatever God is asking me to do, whatever situations come my way, I can do with the strength that he will supply.

All the verses?

Who has time to sing all the verses to the Star Spangled Banner? Who even knew there was more than one verse?

For those of us under 40, we are fortunate if we remember a few lines from the first stanza.

Today, in Avon, Minnesota, Garrison Keillor will lead the crowd in our nation's anthem. Will he sing more than just the 1st verse? If so, will the crowd get restless? Will the children get bored?

Here is one of my favorite stanza's (emphases mine):

Oh! thus be it ever, when freemen shall stand
Between their loved home and the war's desolation!
Blest with victory and peace, may the heav'n rescued land
Praise the Power that hath made and preserved us a nation.
Then conquer we must, when our cause it is just,
And this be our motto: "In God is our trust."
And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!

In a trial, be wary of doubt

"The one who doubts is like a wave of the sea that is driven and tossed by the wind. For that person must not suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways." James 1: 6-8 ESV

From the ESV Study Bible (notes on James 1:7-8): "A person who doubts God's goodness dishonors him. Such a person must not suppose that he will receive anything from the Lord, since he is unsure whether God is good or will do good."

While in a trial, we can't be continually questioning God's goodness or purpose. We must believe in His cause and wisdom even if we don't understand it.

Can you imagine a football player during an arduous pre-season training workout continually questioning his coach's directions?

Or a marine in combat always questioning a superior officer's orders? Or even questioning the whole purpose for fighting the war?

There is a time for questions, but it's not during the thick of the battle.

Another new development

Well today I finished my morning treatment and noticed I had peripheral edema, i.e. swelling in my ankles. To me, this is a worrisome finding because it probably indicates right sided heart failure. I put a call in to my doctor about this, but, of course, no one was working (except me and a few other poor souls) because of the 4th of July week-end.

So I will wait until Monday to find out what they want to do about my possible heart failure. They may want to schedule another right heart catheterization which is a nasty procedure in which they attempt to cannulate the right jugular vein in my neck. Last time they did it it was very uncomfortable.

Other than that, there is little, I believe, that they can do other than include a heart transplant with the lungs if the heart failure is significant enough.

In other news, I have been seriously contemplating getting listed in Iowa. The pros would be an increased chance of getting the call and living one hour away from my sister. The cons would be the incredible logistical difficulties in getting listed at another center at my advanced stage of disease. Plus, I would likely have to pack up all of my "stuff" and move down there, meaning I would have to leave Jan and the boys back here in Minnesota. I potentially wouldn't see them for several months--maybe never again. And Dawn and her husband Joey (and maybe his parents if they are willing) would be the only ones who could stay with me.

Plus, obviously, I wouldn't be able to do any of the packing/unpacking. Someone else would have to do that for me--completely.

Obviously not an easy decision for me. But the U of MN hasn't even done a lung transplant in 2 months! I can't hold on much longer.

I've also thought about listing at other places, but Madison, WI is really the only other potential consideration. The other places are just too far away from my immediate family. This is subject to re-consideration, however, as everything is now on the table. Keep in mind though that even a "short" travel distance of 2 hours is very exhausting to me.

On a somewhat lighter note, I received a card from my sister today entitled:

DESPAIR

"It's always darkest just before it goes pitch black."

I found it extremely funny although I know not everyone shares my odd sense of humor.

New development during clinic visit

After a relatively long time, I was finally able to see my main CF/transplant doctor. For the past several weeks, I had mainly been seeing one of his colleagues as he was on the hospital rotation.

He talked it over with the transplant surgeons and they both agreed that they want me to have my colonoscopy/upper endoscopy before transplant. In other words, ASAP.

They agree that in my current state of health it is risky, but they feel the benefits outweigh the risks. The biggest risk is that I would end up on a ventilator and not be able to get off. The other risks that are usually associated with these procedures are magnified in my case due to my poor health.

So they want to hospitalize me for a couple days prior to the procedure. I will go in on July 13th and have the procedure the 15th. The extra couple days will give me time to make sure my lung function is optimized.

I don't know if they plan to use any sedation or not.

This is all a little scary, but I agree that it seems to be the right decision. It will be nice not to have the uncertainty of my bowel health hanging over my head any more. I "celebrated" after the appointment by ravishly eating 5 beef tacos and 1 chicken taco along with some Fiesta Potatoes and a large Mug's root beer all from Taco Bell. Fortunately, I was not feeling nauseated at the time. I am still full, however...almost 8 hours later!

Taco Bell, pizza at the Olive Garden or the Brookings Pizza Hut, and Chinese fried rice are probably my favorite all time things to eat.

Mom is home

Mom was able to come home from the hospital yesterday. She says it's good to be back and is "hanging in there".

I'm still struggling with nausea, fatigue and shortness of breath. Tomorrow is my clinic appointment, so they may make a few changes. It's pretty tough going, and I long for better days.

How's my faith?

Some may be inquiring of this as I have not written too much along Biblical lines for a while. My faith is still strong although understandably it is getting its share of testing.

I don't have a lot of insight to share at this time in terms of ways to find hope or encouragement. I can certainly empathize with Paul in 2 Corinthians 1 that at times I despair of life itself.

And as C.S. Lewis observed, the only reply we may sometimes get in prayer is the sound of a door shutting and being double bolted from the inside.

Sometimes the comfort that God through Paul promises in 2 Corinthians 1 is very slow to come by. Saturday night it didn't seem to come at all for me until the next morning--and then just barely.

Suffering is like a great fork in the road. You can choose to continue following God's path or you can turn your back on God and take the other path. But eventually you have to take one or the other path.

No one has seen God the Father. And I have never seen a real miracle. I don't believe in Santa Claus. But I do feel that the path I'm following is the most logical and trustworthy one.

And I believe there will eventually be good times ahead...when our mind-boggling weight of glory makes even the toughest past afflictions seem light and momentary.

Inside joke

My wife and I have a longstanding inside joke we tell to each other for a mild amount of dark humor. We tend to alternate who gets to say the punch line.

Jan: It can't get any worse!

Deron: It can always get worse.

Jan: It could...but NOT BY VERY MUCH!

(I know, it's one of those you have to be there to get the humor.)

Letter to a friend

My only real way of keeping in touch these days is via email except for the brief call to my mom in the morning and at night.

Here's a letter I wrote to one of my friends who was asking about getting together for a short visit:

Hello __________,

Sorry we weren't around the other day when you called. Well, actually I probably was but was most likely sleeping or doing treatments. One of the new meds I actually have to mix up myself and set up my own IV bag. I'm wondering if I can get the pharmacist's fees!

These new meds they have me on have left me busier than ever and feeling worse than ever. It's like I'm walking underwater. I don't know which is worse...the fatigue or the nausea or the shortness of breath.

Frankly I haven't had time or felt good enough for any visit. I find it difficult to even get 15 minutes in with the boys, and they are beginning to feel this absence. It concerns me, but at this point prayer is my only option.

My next clinic appointment is this Thursday and I wouldn't be surprised if they wanted to hospitalize me. But who knows? I've given up trying to predict the world of medicine!

Take care and I am always grateful for your prayers.

Hoping for the time when I can get together with you on a more regular basis,

Deron

Clinic appointment and update

We had to cancel our clinic appointment yesterday because the boys were pretty sick. For that matter, I wasn't feeling good either and was relieved that we had to cancel. It would have been a miserable car ride. But I know the way I've been feeling the doctor is going to want to see me soon.

I'll have to try to finesse another appointment in next week which won't be easy given Jan's work schedule, my work schedule and the doctor's already filled schedule.

Last night I was so short of breath that I couldn't lay down. Not sure why although I suspect it's in part due to some of the aerosolized meds I'm taking.

Mom continues to have one chest tube in and is still in need of regular pain meds. She has now been in the hospital a little over 2 weeks.

Like me, she is waiting for some good turn of events, something positive. But we're not holding our breaths.

More nausea, more loud music

I've been feeling nauseated, queasy and very tired all day today. Besides sleeping the only thing I want to do is...well nothing, I guess.

However, I can't sleep all day. I have to do my treatments. And when I'm doing them, the only thing I find very helpful is to play music LOUDLY. This seems to drown out the physical ailments.

Hopefully my family can tolerate it. They haven't seemed to mind so far.

It's like I'm a teenager again. A very sick one.