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.
------------------------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.
