Updates - Day 220

It was Thanksgiving and now it is nearly Christmas. It has been a busy month for us as it has for many of you.

Today, Dec. 21, Jim and I both had appointments. I know some of you have said you prefer to know what is going on with Jim than with me, but we are a couple, so our life is about us, not just him and not just me. You can always skip those parts that dwell on me.
          I had an epidural in my back this morning at St. Luke's Pain Clinic. Some of the muscle and joint pain of recent months that I thought was related to my left hip and leg was actually in my low back.
          Jim had a one-week follow-up with his primary care physician, Dr. Todd Butler. Last week on Dec. 15, his visit with Dr. Butler revealed his blood pressure to be 70/42 and weight 132 pounds. He increased Jim's dosage of midodrine from 5 mg three times a day to 7 1/2 mg three times a day and suggested a MRA (angiogram) of chest muscles might be in order. Today, after the increase in medicine, Jim's blood pressure was 80/50 and weight 130 pounds. His waist, which had dropped from 33 inches to 31, now measures 29 inches.  The doctor was concerned about the lower BP readings, but decided not to do anything about the MRA at this time. He would wait to see what Jim's cardiologist, Dr. Stephen Bailin, has to say. We see him on Jan. 15. Jim has not had any signs of dizziness or lightheadedness; his lungs are clear, heart and kidneys fine. Lab work was scheduled this past week, and results were normal. Jim is to return to Dr. Butler in 8 weeks.
          We also received a phone call from the office of Jim's rheumatologist, Dr. Michael Brooks. We had to return to MedLabs mid-afternoon so Jim could have an INI of calcium. Jim is scheduled to have a Reclast, an annual IV injection for osteoporosis, on Wednesday morning, Dec. 23, but that procedure may be delayed a week  if calcium results are not received by early Wednesday. He was low on calcium, and earlier this week, was told he also was low on Vitamin D. Both of these supplements were stopped from May to July, when he was having various procedures at UIHC.

Jim still is tired, probably because of the ischemic stroke and arthritis, but the Lord enables him to accomplish many things.
          On Nov. 29, he decorated the lamp post in front of our house and set up the vintage sleigh, reindeer and Santa my parents made many long years ago. He also set up lights so passersby could see it and the nativity in the evening hours. Most of the decorating indoors was done by Dec. 1, and on Dec. 5, Jim started baking for our open house. I  helped with decorating sugar cookies, writing and printing the Christmas newsletter, setting up the food display, etc. We had 35 people come to our Open House Dec. 12, including four members from Wilton Baptist.
          We have over 50 nativities (as well as multiple Christmas trees, angels and Santas) and 10 of them were obtained just this month. Among them: a silver nativity from Ron and Carla Dunnahoo at Wilton, a glass nativity with Merry Christmas across the top from church members at Wilton and one from a hospice client Jim visits in Central City.
          Various Christmas programs we attended were Cedar Rapids Washington Madrigal Singers during evening services Dec. 13 at Immanuel, Austin's preschool musical Dec. 15 at Taylor School, and Immanuel's youth choir during evening services Dec. 20, also at Immanuel.
     
We continue to serve at Wilton Baptist Church and love our time there. We are in no hurry to have it end, but that is all in God's timing, so we will enjoy whatever He gives us. Jim and I drive to Wilton every Sunday and sometimes Jim or both of us (if it works out) go there mid-week to visit members or lead a service. He also visits members who have had procedures in the hospital.  A Christmas Eve candlelight service will be Thursday, Dec. 24, from 6:30 to 7:30 p.m.

Thankfulness - Day 196

Today is Thanksgiving Day.

Today is the Day
the Lord has made
Let us rejoice
and be glad in it

Today was yesterday
Today is tomorrow
Everyday is the Day
the Lord has made
Let us give thanks
Let us be grateful
Let us look forward
toward the Lord
Keep us always aware
of Him who will guide us
along the path
He has for us.
(c) Cathy Orrick Luders
11.26.2015

Among requests in this morning's prayer time was that Jim would stop getting smaller. He doesn't think he is losing weight, however, his waist size is decreasing and he doesn't want to "waste away to nothing." Before his surgery, he wore 33 x 36 pants and large sweaters; now he wears 32 x 36 or 32 x 34, and depending on the cut, sometimes 31 x 34, and medium sweaters.

Jim still has occasional episodes of dizziness and shortness of breath, but nothing like it was.

Last night, Wednesday, we had Thanksgiving Eve services at Wilton Baptist. It was a good drive down even though the traffic was quite heavy on I-380 and I-80. There was and is much to be thankful for.

Jim has been working on his Christmas sermons. This coming Lord's Day, he will begin advent messages. The first message, on Nov. 29, has to do with prophecies. We enjoy our ministry with Wilton Baptist and hope the Lord will allow us to continue there, at the very minimum, through Christmas.

In a short while, we will travel to Waterloo and have Thanksgiving dinner with Jim's sister, Dianne, who lives in Ankeny, and their aunt, Effie, who lives at Friendship Village. We are looking forward to the visit and hope to play a game of Scrabble before returning home.

Since last writing, we've had our first run-in with snow. Jim got gas for the snow blower and it actually started after a few tries. The heavy wet snow began Friday night, Nov. 20, and stopped late morning on Saturday. He used the snowblower and the shovel on Saturday and was overly tired afterward.

Saturday night we had our family over - Rocky, Christina, Austin and James, for a Thanksgiving gathering - turkey, dressing, mashed potatoes, sweet potatoes, green bean casserole, scalloped corn, pumpkin pie, homemade potato rolls. All good. All filling.

Sunday morning, Nov. 22, the roads here were good. The roads and sidewalks in Wilton were not cleared, so ice was in many places. I had the day off from work, so we had lunch with Eric and Kathy in Wilton. It was good food -  Jim ate everything he ordered and even a piece of cherry pie - and a good visit.
 

Other things - Day 187

There really isn't anything healthwise to report re: Jim - he is better, the heart monitor will be returned by week's end, the only time he is short of breath is when he has over-exerted himself.
But there are other things, so I thought I'd share them.

We determined we were going to have our annual Christmas Open House this year no matter what. It is set now ... we have most invitations sent out and are working on decorating in and out. It is coming along much better in than out, because the weather is not very cooperative. We do have our outdoor nativity up, however.

We enjoy ministering to the people of Wilton Baptist. The 60.1-mile trip to and from seems to take less time the longer we serve there. We don't know how long we will remain there. Earlier this year after Jim had had his surgery, we talked about being willing to go wherever the Lord sent us. He sent us to United Federated in Lisbon for three weeks in August and then returned us to Wilton Baptist, where we have been since Aug. 30.

The church is searching for a fulltime bi-vocational pastor. Jim was called to be its interim pastor Sept. 27. For the past 3 to 4 weeks, we have considered applying for the open position.

It wasn't until today, Jim felt a tugging from the Lord.  Of the several devotionals he reads, it was from Oswald Chambers'  "My Utmost for His Highest" that he thought God had given him an answer.
I have included it here in its entirety:

"By Myself have I sworn, with the Lord, for because thou has done this thing ... that in blessing I will bless thee..." Genesis 22:15-19

Abraham had reached the place where he is in touch with the very nature of God, he understands now the Reality of God. 

"My goal is God Himself ...
At any cost, dear Lord, by any road." 

"At any cost, by any road" means nothing self-chosen in the way God brings us to the goal.

There is no possibility of questioning when God speaks if He speaks to His own nature in me; prompt obedience is the only result. When Jesus says - "Come," I simply come; when He says - "Let go," I let go; when He says-"Trust in God in this matter," I do trust. The whole working out is the evidence that the nature of God is in me.

God's revelation of Himself to me is determined by my character, not by God's character.

"'Tis because I am mean,
Thy ways so oft look mean to me."

By the discipline of obedience I get to the place where Abraham was and I see Who God is. I never have a real God until I have come face to face with Him in Jesus Christ, then I know that "in all the world, my God, there is none but Thee, there is not but Thee."

The promises of God are of no value to us until by obedience we understand the nature of God. We read some things in the Bible three hundred and sixty-five times and they mean nothing to us, then all of a sudden we see what God means, because in some particular we have obeyed God, and instantly His nature is opened up. "All the promises of God in Him are yea, and in Him Amen." The "yea" must be born of obedience; when by the obedience of our lives we say "Amen" to a promise, then that promise is ours.

 We spent the afternoon in Wilton. Today we learned the pastor search committee has invited a man to come in view of a call. He will be preaching Dec. 6. Today Jim shared he was interested in the position.

So it is up to God, as it always is. His will be done.

We covet your prayers for His will, not anyone's wishes, but simply His will.

Updates - Day 183

We'll start with Wednesday, Nov. 4 - Jim had his infected tooth that was diagnosed Nov. 2 removed this morning. Has had no problems with it since.

The following Wednesday, Nov. 11 - Jim had a CT scan of his chest, followed by a 3-month followup visit (even though it has been 6 months since the cancer surgery) with Dr. Parekh at UIHC. Results of the CT scan were good - no apparent reoccuring cancer. That is a blessing. His blood pressure is improving - 97/52. He is to return in 6 months and after that, yearly visits.

Today, Nov. 12 - he had an endoscopy to see how the ulcer was healing. Dr. Gerke said it was not healing, and it may never heal, but he was not overly concerned about it. It's not bleeding either, and as long as it stays that way, good. Perhaps this is what you call an inactive ulcer? He recommends Jim stay on 40 mg of Pantoprazole, once a day, to help it heal.  

Appointments - Day 174

The first of many appointments today was a visit with his primary care physician, Dr. Todd Butler. Weight is 128.6 pounds with clothes on. Blood pressure is 70/46. Jim's plan of action to reduce the frequency of taking Midodrine was curtailed by Dr. Butler, who said he really needs to be taking it three times a daily so it will last all day and raise his blood pressure. Otherwise the medicine only lasts a few hours and is of little benefit. Results of blood work drawn indicated his thyroid is fine and he is a little anemic.

The consultation with his dentist, Dr. John McGrane, resulted in an appointment Wednesday morning at 11:10 to remove the infected tooth. Then, on Tuesday, Nov. 17, at 11 a.m., he will have two fillings repaired.  

Another infected tooth - Day 173

Today, Monday, Nov. 2, Jim had a dental appointment. There was no indication it would be anything but normal, but something was wrong when the hour appointment stretched into 1 1/2 hours. When he returned home, he said he had another infected tooth - upper right this time. Jim said they took 21
x-rays. The tooth needs to come out soon, so we are having a consultation with Dr. McGrane at 2 p.m. Tuesday to determine exactly what to do and when to do it. Another expense.

We spent a good share of the day in Wilton, where we visited with Ron and Jim had an interview with a reporter from the weekly newspaper, Wilton-Durant Advocate News.

Last Tuesday, Oct. 27, Jim had a colonoscopy. He had one tiny polyp, which Dr. Gerke removed. He is to return in 5 years.

He has reduced the frequency of taking the Midodrine (which raises his blood pressure) from three 1/2 tabs daily to one 1/2 tab. He thought the medicine was causing a decrease in potty flow. It appears this plan has helped as the BP has remained good, with no dizziness, and potty flow has increased.

In addition to the 3-month clinic visit with Dr. Parekh on Nov. 11, Jim is scheduled to have an endoscopy Nov. 12 to see how the ulcer is healing.

Second opinion informative - Day 164

Today is Saturday, the 164th day after Jim's esophageal cancer surgery. It has been a mostly quiet day, except for the occasional beep of the heart monitor he is to wear for the next 29 days.

Yesterday - Friday, he had a second opinion appointment with Dr. Stephen Bailin, a cardiologist at UIHC. We like Dr. Bailin - he explains things so you understand what's going on and what isn't and he doesn't give you the impression whatever he says is what you should do. He listens to the patient and the family. He's going to be Jim's new cardiologist going forward. Good-bye Dr. Li.

We arrived 30 minutes early for our appointment. Weight and blood pressure were taken right away - 129 pounds fully clothed and BP was low.... 78/43. The EKG was normal.

We discussed not resuming the Coumadin - he has been off it since Oct. 1, when he was diagnosed with a bleeding ulcer that resulted in another 5-day stay in the hospital. The multiple periods of dizziness and lightheadedness in a given day have been absent. He was feeling better. There have been two brief moments of dizziness, however, in recent days - one was Oct. 18, the other Oct. 19. If there were others, Jim hasn't said.

It was determined even though he had one episode of a stroke (ischemic), he has not been in AFib since his June surgery for the bowel obstruction. It was decided he didn't need to be on Coumadin, just a baby aspirin.

We discussed an alternative medicine to the Flomax taken for the prostate. Flomax can cause low blood pressure / dizziness too. Even though he has been on the medicine for a long time, it may possibly be causing problems in his body now.  So the medicine Alfuzoin was considered as one less likely to cause hypotension. But we didn't end up going that route, at least not right now.

Another potential medicine is Midodrine which can raise blood pressure. Dr. Bailin asked if Jim had had an ultrasound. He did have an endoscopic ultrasound March 31. Apparently Jim has a congenital defect, with a flap-like opening in the wall of the heart. Usually this flap closes at birth, but there are some cases where it stays open. It appears Jim is one of those "cases."

Jim had his blood pressure taken laying down (84/49), sitting up (76/43) and standing (80/45). Then he had blood drawn for a cortisol stimulation test, which shows an excess or deficient amount of cortisol and how the adrenal glands are functioning. I'm not sure what his results mean. The preliminary numbers were 8.4. On Monday, Oct. 26, we found the final numbers to be 22.0 - elevated from the standard range.  By Friday, Oct. 30, we learned the numbers were not abnormal, so I'm guessing the adrenal glands are functioning just fine.

The doctor wants to try him on the Midodrine, the smallest dose of 2 1/2 mg 2 to 3 times a day - morning, noon and supper time. The round pills are very hard to cut in half, even with a pill splitter.

Also, Jim is to be on a heart monitor for 30 days to see how he is doing. Records will automatically transmit to UIHC. Whenever he has an episode (dizziness, lightheadedness, shortness of breath), he is is push the button on the monitor.

Interim Pastorate
Jim began serving as interim pastor at Wilton (Iowa) Baptist Church in October. We started traveling to the Wilton area Tuesday, Oct. 13, to visit church members. The next time was Wednesday, Oct. 21, and Jim went by himself. He did just fine driving to and from.

Sunday, Oct. 18, was Pastor Appreciation Day. All pastors who have ever served at Wilton Baptist were invited to a luncheon after worship. On this day, besides Jim and me, there was Mike and Ginny Roberts. Mike used to serve in the Cedar Rapids area, but now is in southeast Iowa as director of missions. Craig Horning, a former Cedar Rapidian and Immanuel member, who now lives in Deming, N.M., came with us. I had the afternoon off from work, so was able to enjoy more of the festivities.

Sunday, Oct. 25, Jim will preach from 1 Peter: 2:11-25 on "The Nitty-Gritty of Every Day."

Awana and Canning
Wednesdays are special - we take our grandson to Awana - Austin, who will be 4 in a few short weeks, is in Cubbies. He seems to enjoy the time there and is learning about Jesus.

Jim often is tired. I can't imagine why sometimes - he has taken up the art of canning and has come to be pretty good at it, via instructions from the internet. On Oct. 14, he canned 4 pints of tomatoes and 2 pints of applesauce. On Tuesday, Oct. 20, while I did Gazette work at home for six hours, Jim made homemade vegetable beef soup and homemade bread. We delivered the homemade goodies, including applesauce, to Cathy's adopted mommy, Miss Anna, and had a nice visit.

Follow-up visit Nov. 11
Jim's 3-month follow-up visit with Dr. Parekh, his cancer surgeon, has been scheduled for Nov. 11. It may be his 3-month visit, but it's 6 months after surgery.

His next appointment with Dr. Bailin, his new cardiologist, is Jan. 15, 2016.
   

Questions - Day 153

We have more questions than answers re:  Jim's health care after three hospital stays and two surgeries.

Jim was released from UIHC at 4:45 p.m. Monday, Oct. 5, after a five-day stay for internal bleeding / bleeding ulcer.

In my readings,  I have found an ulcer is a hole generally in the stomach or small intestine, but can be anywhere in the gastrointestinal tract.  Jim's ulcer formed at the juncture of the esophagus (1-2 inches) and stomach, where he had his esohagectomy May 12.

His thoracic surgeon, Dr. Parekh, says the tissue is still new and fresh and not healed,  leaving it more susceptible to problems. His primary care physician, Dr. Butler, whom Jim saw Oct. 8,  says it's been 5 months ... it should be healed!

In our visit with Dr. Butler, he made these comments:
**Coumadin does not cause dizziness
**Coumadin does not cause bleeding. It can cause you to bleed more, but not to start
**You can have reflux from stomach back up even if you do not have heartburn, therefore, you should be on pantoprazole.
**An acid blocker could heal the ulcer
**Some other medicine Jim is on causes the dizziness, such as Flomax or Benedryl.

Our unanswered questions:
**Why did Jimmy have dizziness when on Coumadin (June - September), but since being off of it (Oct. 1), there is none?
**Why is dizziness listed as a side effect of taking coumadin if that is not so?
**Why has it been said coumadin can cause low blood pressure which can result in dizziness?
**Why hasn't the tissue area healed where the esophagus and stomach were sutured?
**Why is he on Pepcid, an acid blocker?
**Why is there no clear cut direction from more than one doctor re: pantoprazole?
**How do you know the ulcer is a result of acid ... is it not possible it is because of bacteria?
**What would an endoscopial ultrasound show? He had one in March before the cancer surgery.  He has had two endoscopies since Oct. 1. He is supposed to have an CATscan - is it not possible this would show ulcers or healing process?
**How do you determine normal readings for hemoglobin?  We've been told 10 is normal for Jim, yet before the May 12 surgery it was 13.5. After 2 pints of blood were given between Oct. 1-5, it remained stable at 8.8. The lowest reading was 6.8. Dr. Butler says 8.8 is still low, 10 is low.

On Oct. 8 visit with Butler, Jim's BP was 90/42, which is normal for him. Weight with clothes on was 133 pounds. No scale is the same.

The next appointment coming up is Oct. 23 when Jim sees a cardiologist for a second opinion at UIHC.


My writings:

Questions
So many
agreement
between
doctors
missing
Answers
not found
We listen
We read
Nothing consistent
What one says
is fact
another says
is not
Who are we
to believe?

Our minds
in a
quandry
confusion
and frustration
take hold
We are obsessed
with knowing
what is
true and correct

I remember
The Lord
said
He would be with us
He would bring us through it
He would guide us
not just part of the way
but every step
That means
even through
the complications
and in retrospect,
not just through Jim's cancer
and the various side effects
but even my own
health issues

No more
We have too much
Take it away
Take it away Lord
Yet God says
in His word
He will not give us more than we can handle
What does He know
What does He see

He is wirh us
He guides us
If we are close
closer to Him
We will hear
in the stillness
His Holy Spirit

The answers
we seek
we find
in the solace
of our Lord Jesus

He hears our prayers
He knows our concerns
He answers
but are we listening
did we hear His response
or are we unsure

Doctors do not agree
have not agreed
say this and that
and another

Jim has been off
the coumadin
12 days
There is no dizziness

Is this God's answer?

Coming Home - Day 146

One of us had a good night's sleep - and that would be me. Slept 6 1/2 hours through.

Of course that means Jim didn't have a good night's sleep, unless you count the time between 11 p.m. and 2 a.m. His roommate's IV started beeping at 2, and it took 20 minutes for anyone to come in and stop it. Then at 4, his nurse came in to get Jim's BP, which was 80/40. Decided that was too low, so they tried the other arm. Then they hooked him up to an IV, probably with salt in it to boost the numbers. IV was in for an hour, then it beeped. Then labs done. By that time it was 6 a.m.

But there was good news with the morning ....

**Hemoglobin remains normal at 8.8.

**He could have a full regular diet, starting with breakfast.

**He could cancel Oct. 23 2nd opinion appointment with cardiologist -- he would not resume taking Warfarin / Coumadin - and report would be (hopefully) sent to local cardiologist Dr. Li

**He  could come home early afternoon.

A few things on this list didn't quite happen as well as hoped.

One, we really need to keep the Oct. 23 appointment with UI cardiology, and
Two, early afternoon became early evening - we left UIHC at 4:45 p.m.

Differing opinions between doctors

We have heard a differing of opinions again between doctors. Can't seem to get everybody on the same page. So who do we listen to?

**One doctor said Jim should be off Coumadin, he should cancel the second opinion appointment with UI Cardiology.

**Zachary Smith, the gastro-intestinal doctor who has been treating him these past few days, said he is to be off aspirin and Coumadin until his appointment with his primary care physician (Dr. Todd Butler, Oct. 8), who is to make the determining decision.

Dr. Smith believed Jim should be on a blood thinner because of stroke in 2012 and because of being in Afib. He is under the mistaken belief that Jim has had multiple strokes, when he has had only one mini stroke.

He also thought Jim should be on omeprazole or pantoprazole because of acid reflux.

**Dr. Parekh, the surgeon, weighed in with his opinion.
I had called Joan, the thoracic coordinator, soon after visiting with Dr. Smith and asked her a couple of questions to speak to Dr. Parekh about:

1. What caused the ulcer? How did it form?
2. Why would omeprazole be prescribed when the cancer surgery did away with the need for it?

His answers --
The ulcer formed where it did - at the juncture of  the reattached esophagus and stomach (esophagectomy) - because the tissue is still new (4+ months), fresh and healing. The bleeding was brought on by the Coumadin. Symptoms from the loss of blood (which could have been revealing itself for some time since Jim has complained of dizziness for months) reared its head big time on Wednesday, Sept. 30, when shortness of breath, extreme dizziness, extreme tiredness and weaknesss and black stools were evident.

Dr. Parekh  reiterated what he indicated at the one-month clinic visit on July 1 - with the esophagectomy, there should be no heartburn or acid reflux problems. Taking omeprazole or pantoprazole will not change anything.

We are inclined to go along with his thinking. Why be prescribed medicine for a problem that was corrected in May? Jim did have acid reflux and Barrett's Esophagus, but he doesn't anymore.
He was put on Coumadin because he acquired Afib as a result of the May 12 surgery. By June 11, when he had the second surgery, Afib was no longer a problem, yet ....  Coumadin remains a problem.

The GI doctors want another endoscopy performed to see how the ulcer is healing.
When Jim has his 3-month check-up with Dr. Parekh, he also will need a CATscan.

Stable - Day 145

Jim called at 7:15 to wake me from an unrestful sleep. His BP was normal. Blood was drawn for the hemoglobin, but results weren't known until 8:50 a.m., when he called again. It is 8.5 - still good. It would appear the bleeding has been stopped. The doctors were in. He may be able to eat regular food - he is eager to have breakfast. Said apple juice just doesn't do much for his appetite... lol.

It's shortly after noon now - still on liquid diet. Didn't have anything for breakfast because nothing appealed to him. Did take a shower, and had some shortness of breath, which could be attributed to the fact he didn't haven't anything in his tummy. He'll order chicken broth for lunch.