Home and a new skill set

Sandy broke out of the hospital Friday afternoon. She might have been a tiny bit ready to go home...! Because the blood culture results indicated that the bug she's fighting only responds to IV antibiotics, she had the pleasure of learning how to give herself the antibiotic through her port tubing. She'll continue to do that once a day for awhile. Since her drain tubing and port tubing look identical, she is working on a patent for color coded tubing. Just kidding. But someone ought to!

She doesn't feel 100% yet, but so much better than last Monday. She's taking it slowly with food, on account of that bad tempered pancreas of hers. In time, that should improve as well. On Tuesday she returns to the Cancer Center for routine blood work.

Her next TX trip is coming up mid June. Please pray for excellent news, calm hearts, and good health between now and then.

Happy Memorial Day!

She looks so good! And then she didn't....

At church on Sunday, numerous people told Sandy how great she looked - her countenance was good, her skin tone looked healthy, her eyes had that pain-free spark again. Her hair has really grown thicker the past few months, and she has not been itchy for quite some time. The only not-quite-right thing she had been noticing was a feeling in her abdomen that can mean the drain is on its way to needing to be replaced. However, she had decided it would just be fine until her next TX trip, since the last drain, which has been pain free and leak free, was put in during her last TX trip.

You know how Kansas weather changes on a dime? How it can be 85 and sunny one day and then 24 hours later it's snowing? Sandy is clearly a Kansas girl through and through.

Sandy woke up Monday morning with intense pain and pressure. By now in her journey, she recognizes which type of pain and pressure means a bad stent and which one means a bad drain. This time it was the drain. Her doctors scheduled a drain replacement at St. Francis at 1:30 Monday afternoon. First, though, she went to the Cancer Center for lab work, since her counts were too low last Thursday, which meant she'd had an extra medicine over the weekend to increase the counts...a medicine that makes her feel lousy. By the time she arrived at the Cancer Center, her fever was rising, she was freezing cold, and it was becoming more difficult to think clearly. The nurse at the Cancer Center has seen Sandy like this several times before, and knew what it meant - call in the PA, maybe the Dr., and look at a possible hospital admission, hoping to stay a step or two ahead of sepsis. 

Sure enough, after talking to the PA and the Dr., Sandy was wheeled over to St Francis. Her outpatient drain replacement became an inpatient drain replacement plus whatever was needed. Thankfully, they kept supplying her with warm towels, she didn't have to wait TOO long to be taken to a room, and biggest of all, the nurse was able to find a vein to draw blood for additional labs on the first stick - that's almost unheard of for Sandy.  

After the drain replacement, Sandy felt much better, though not great. Labs showed that her pancreas is kind of angry, which is not unusual for this type of procedure. She is still at St Francis, on a delicious clear liquids diet, hoping to be dismissed Thursday afternoon. She's on summer break, after all, and has better things to do than sit in a hospital bed! 

This is a great reminder to be thankful for each good thing each day, not because we're afraid it won't last, but because each day truly is a blessing, and we're only cheating ourselves if we don't fully appreciate them all. 

Encouraging news

Rod and Sandy returned home late last night/early this morning. While tired, both from a busy schedule and from Dallas traffic, they were both in relatively good spirits. Tests showed that Sandy's cancer markers have gone down (that's good!) and she no longer has a blood clot (also good!). She will continue chemo every other week, returning to TX for more scans in three months.  Doctors decided not to do a full biliary exam since this drain, which is #5, is working well - perhaps better than any previous drains.

Thanks for your prayers! Please take a minute to thank God for this encouraging news. The journey continues!

Upcoming TX trip

Sandy returns to Texas next week Mon-Wed where she will have routine scans as well as some testing to determine the overall state of her drain, liver, etc. Please pray for safe travels, restful sleep, on-time appointments, hassle free parking, peace that passes understanding, and, most of all, very good results.

We're gearing up for our family's Easter celebration...kids, eggs, food, games, and extreme thankfulness for what Christ did for us on the cross. We cannot imagine how we'd be walking this journey without the hope and ultimate positive outcome that is ours through Christ.

New year, new semester, new drain...

In the weeks since the last update, quite a lot has happened, though not much has changed - fevers, tests, ER visits, appointments, opinions, pain, fear, hope, gratitude.

Sandy has had significant pain since the insertion of the drain. Doctors told her that it was the best available option at this point. However, the pain was using too much of the limited energy she has most days. Yesterday (Monday), she went to the hospital so radiology could look at everything and determine if any changes could be made so she would be more comfortable. I may not get all of these details right, but here goes! The drain had migrated down into the small intestine, was leaking, blocked, and overall very gross. Gross...that's not a word the doctors used. Their word probably had at least six syllables. :) 


A new drain was put in place and fastened to Sandy's belly using a special kind of covering she had not seen before. (If Rod was in charge of this update, we'd also have the right name for the covering...good thing I'm not getting paid for this job!) The drain is now sticking out quite a bit more than the previous drain, and is so far much more comfortable. Crazy that we're talking about a drain sticking out of your gut as being comfortable. Perspective, I suppose.


Hopefully all of this will relieve both the internal pressure Sandy has felt for weeks and the external discomfort caused by leaking bile.


The spring semester has begun, and Sandy is grateful not only to be teaching, but also that her supervisor arranged her schedule so she is teaching in the mornings and not in the afternoons. Her stamina is not where she'd like it to be, though I'm not sure whose stamina would be great with a migrated and leaking drain!


The next TX trip is in March. I'll update at least by then, if not sooner.

Texas Trip Results

Thanks to all of you who have prayed and are continuing to pray. We have felt those prayers for sure.

Here is an update from Rod:

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The tone of the trip to MD Anderson in Houston was set early by the weather and the traffic.  It was cold, dreary, frustrating, and anxiety producing. 

 

The blood tests and CT scan were in a different building this time, probably due to being scheduled on Sunday.  The information on the website was difficult to find, and, in this instance, totally inaccurate.  There are a series of skybridges from the hotel to the main building to another building and onto another building.  Printing directions late Saturday night from an MD Anderson kiosk maintained exclusively for the purpose of directing patients to the proper building for their various appointment proved to be quite exasperating!  The directions told us to proceed through the Mendelsohn Faculty Center to the skybridge and to walk about 1500 feet through the skybridge to the final destination known as the Mays Clinic.  With an 8:00 a.m. appointment to draw blood, we were on our way through the hotel to the faculty center early Sunday morning – only to find that the doors to the faculty center were locked!

 

Retreat to the hotel and to Plan B.  Take the car to the Mays Clinic and park in the underground parking garage as the website indicated.  WRONG.  The underground garage is closed on Sunday.  Nary a word to that effect was found anywhere on the MD Anderson website.  So, drive around the building hunting for another place to park.  At one point, we drove through an area which provided valet parking.  The website indicates that valet parking is $15.00 per day so that was not on the radar.  Sandy was dropped off on the south side of the building without any idea whether the doors would open to the building or not.  Parking was finally obtained in a public parking garage across the street from the Mays Clinic.  Now, there are several long outside stairways to the building, but each one has a sign stating that they are not an entrance!  The entrance happened to be the place where Sandy was let out of the car.  Four hours of public parking resulted in a charge of $12.00!  As if the charges for the tests and appointment are not already unbelievably high ...!!

 

When a security officer was asked where the patients were supposed to park since the skybridge was closed and the underground garage was closed, he responded that the valet parking was available – and was FREE!  Absolutely nothing was found which told the patients with Sunday appointments that valet parking was free at the building housing the Mays Clinic.  So, the day started as one giant frustration.  None of the information which accompanied the appointment schedule contained any of that information either.

 

The blood was drawn close to the appointment time and the CT procedure also began close to the appointment time.  Last January, when the technician was informed that Sandy had a power portacath which could be accessed for the blood draw, she was directed to a different department on a different floor to wait for someone to schedule an xray to confirm the presence and location of the portacath!  We were told that the information would be part of the medical records at MD Anderson and that the technicians would be able to access the port to take blood thereafter.  Well, when the CT tech was informed that there was a port for the IV rather than trying to find a vein, the questioning began.  Had it been done before?  “I’m not trained to do that.”  “I can’t find anything in the file.”  Finally, after a significant delay, another individual asked all of the same questions and made many of the same comments before actually finding the information in the medical file.  FINALLY, the port was used and the CT taken without further incident.

 

Back to the hotel to twiddle away the next 24 hours waiting for the oncology appointment at 1:30 p.m. on Monday – the same appointment which had originally been scheduled for 9:30 a.m., then re-scheduled for 11:30 a.m. and then finally re-scheduled for 1:30.  Surprisingly, the appointment actually occurred about on time, rather than the usual two hour delay!

 

The news was not what Sandy wanted to hear.  Rather than being told that the growth had stopped and that she could have several weeks or months of a chemo free holiday to allow the body to recuperate, we were told that the growth had increased to some degree, and that there appeared to be several nodules in the abdomen which had not appeared on the scan before.  Whether the nodules were due to cancer or some other reason was unknown.

 

Because the current chemotherapy did not appear to be stopping the growth of the tissue, a new treatment regimen was prescribed, substituting one chemo drug for another one.  In some ways, the new drug is kinder to the body, while in other ways, the possible side effects are considerable.  The treatment process will be the same:  every two weeks an injection followed by the pump for 46 hours after the injection.  We don’t know how long it will take for the approval from the insurance company to begin the new drug treatment.

 

In addition, the scan showed a clot in a portion of the portal vein.  To combat the clot, Sandy now self injects a syringe of blood thinner once a day.

 

The oncologist recommended that the external drain be capped as long as it could be determined that the internal catheter was in place and operating to drain the bile and other material being created by the left lobe of the liver.  The doctor thought that the internal drain would be less likely to cause fatigue and more likely to promote general health.  The procedure to evaluate the catheter and to cap the drain will be done in Wichita.

 

Another appointment will be scheduled at MD Anderson in three to four months to repeat all of the tests and scan to further assess the situation.

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I had considered omitting the part about all of the frustrations, but decided to leave it in because we are just normal people dealing with normal life, and stuff just happens. We're glad God is using Sandy's story to encourage others, but it has little to do with our own merit

I think Sandy had been plodding through the past few months, trying to ignore not feeling well, trying to remain positive, almost convincing herself that the TX trip would have good news. It's easier to deal with challenging circumstances when you see light at the end of the tunnel. When that light turns out to have been a mirage, discouragement can quickly set in.

While it may seem right now that hope and joy and thankfulness have taken a vacation somewhere else, in reality, they are just covered up temporarily by frustration and discouragement. Sandy still knows the truth, and she still knows the Truth-giver. She still has the joy of the Lord as her strength, though it might not be as visible at times. She still has an enduring hope that reminds her that she is ultimately victorious. The sadness is a surface feeling, though it feels very strong. Joy, hope, and thankfulness are part of her core being - they are a permanent deposit of the Holy Spirit, who will never leave her.

We don't know what the next section of this journey will look like - nor do we know what it would have looked like had the test results been positive!  Do we trust God? If so, we can continue praising Him, continue looking for the good that is inherent in every day, and continue CHOOSING to focus on His faithfulness, asking for wisdom to walk each day in a way that honors Him and points others to Him.

We'll keep you updated. Thanks again.

Home Again!

Sandy came home this afternoon!

We have many questions at this point, some of which may be answered during the upcoming trip to MD Anderson. How long will she have the drain? Will they stent the left side now in addition to the already stented right side? Is this new development surprising - or was it expected? Why was the blocked duct dilated? Is that a good sign? The list goes on and on.

However, we are thankful she is back home, and optimistic that she will feel MUCH better very soon. It's been a long several weeks of her feeling not so great.

If we don't have another update before the TX trip, this is our opportunity to wish you a Happy Thanksgiving!

1 Thessalonians 5:16-18
"Be joyful always. Pray continually. Give thanks in all circumstances. For this is God's will for you in Christ Jesus."