Trip to Houston past acres of fields of cotton awaiting harvesting

Uneventful visit to MDAnderson this time...Rusty had four appointments on Tuesday, the primary one being with the Melanoma Team.  They are pleased with his status and now feel that his trouble with balance and walking may be his "new normal" due to the radiation damage in the brain.  Between his walker, a cane and his scooter, ambulating is not really a problem.  His routine immunotherapy treatment was just that...routine.

We took some time between appointments to visit the hall of history at MDAnderson and to enjoy some of the gardens on the campus.

After the full day of clinics and appointments, we unwound, as usual, at D'Amico's.

We return to MDAnderson in 28 days...keep those prayers, the love and good vibes coming!!


  

We retrieved our trusty RV Trailer from the shop in Rockport on Saturday and headed for Houston on Rt. 35 along the Texas coast.  One of the distinct benefits of this route is the crawfish etouffee at Baytown Seafood in Van Vleck. 

Since Rusty's appointments were on Monday and Tuesday, we vegged out on Sunday and spent the afternoon in Richmond (a suburb of Houston) with Cadge and Bob.

On Monday Rusty had his usual 3 month "restaging" body scans, and since we missed our usual Italian dinner during our last visit, we made up for it Monday at D'Amico's.

On Tuesday Rusty had seven appointments, three with clinic teams, two diagnostic, including a brain MRI, and two infusion related.  

Only one seizure this month and Neurologist has decreased seizure medications in hopes of improving walking balance and coordination.  Otherwise neurologically stable.  No return visit to this clinic for six months.  YAY!

Radiation neuro-oncologist reports that brain MRI shows that the brain is stable - no further necrosis and no new lesions.   No return visit to this clinic for four months.  YAY!

Melanoma doc says scans show no tumor activity and Rusty is "perfect."  Rusty will continue the immnunotherapy for about nine more months, once every 28 days.  YAY!

So, as usual, to celebrate Rusty's good health and our high spirits, we had a meal - upscale Chinese this time. 

We leave Houston tomorrow to spend a couple of R and R days at Blanco State Park, then head over to Wimberley on Friday to prepare for the August Wimberley Market Days on Saturday.  Home on Sunday.  Thanks once again for your interest, prayers, good vibes and support...we feel surrounded by love.

In mid June Rusty’s seizures increased in frequency and his MDAnderson neurologist increased his anti-seizure medication.  He has had infrequent small facial motor seizures due to the effects of radiation to the brain.  The medication did the trick as far as stopping the seizures, but has caused him to have more trouble walking...balance and coordination are impaired, and his legs fatigue easily.  So, early this week he became the proud owner of a three wheel scooter.  It has made a wonderful difference in his quality of life...he is happy with it and promises to learn to practice moderation with the speed.

   

We changed our usual Houston routine for this July 2 visit since the travel trailer is in the shop for axle repair.  We flew to Houston on Tuesday morning with plans to fly home Tuesday evening after the last appointment.  MDAnderson was doubly crowded on Tuesday because of theThursday holiday, so appointments backed up and we missed the last flight to Corpus Christi Tuesday.  We stayed over in Houston at the MDAnderson Rotary House hotel Tuesday night and flew home on Wednesday morning.  Southwest Airlines was wonderful about changing our flight at no cost citing a “medical exemption.”

Uneventful medical visits this time.  Labs were good, visit with melanoma team was positive and the immunotherapy infusion was routine.  Next visit Rusty will have brain MRI and Body CT scans for “restaging”...checking for tumor activity.

Our next visit is scheduled for July 29 and 30.  In the meantime we plan a 10 day trip to the Ozark Mountains.  Please keep the prayers and good wishes coming.  You all give us strength, and we are grateful.

Wednesday, June 5

Once again, this month we drove directly from Wimberley to Houston after doing the June 1 Wimberley Market Day.  After taking a day off to play in Houston on Monday, we started early Tuesday morning with appointments at MDAnderson.  Jeff drove up from Corpus Christi to accompany us to the doctors’ appointments...you may recall that he was with us when we started this journey 2 1/2 years ago and he likes to stay “in the loop.”

Our visit with the neurologist was positive in that Rusty’s seizures seem to be under control with the new medication regime.  A brief neuro-psychiatric test showed some small cognitive deficits consistent with where the tumors were removed.  For the first time we saw MRI images of the tumors that were removed with resection surgery and gamma knife radiation...we were blown away by how large the largest tumor was, and by the competence of the medical team that resected it, as well as the competence of the team that performed the gamma knife procedure on the smaller tumor.  We refer to the area where the tumors were as “Rusty’s Black Hole.”

Dr. Amaria and the melanoma team are happy with Rusty’s physical condition and status, and encourage him to be be active, travel and pursue his interests.  Next “staging scans” will be in August.   The routine immunotherapy infusion takes about 1 1/2 hours with the prep, actual infusion and post infusion care.  Uneventful, as usual, thank God.

Dinner at D’Amicos to celebrate a positive visit.  Weather very rainy with flooding, so we held over in Houston today and hope to get home tomorrow.  Keep those prayers and positive vibes coming!

On May 5 we drove from Wimberley directly to MDAnderson for appointments on May 6 and May 7.  In addition to lab work, Monday, May 6 was the routine three month "restaging diagnostics"...a body CT scan and a Brain MRI to determine the existence and/or status of tumors.  In the case of the brain MRI, they are also checking the post treatment necrosis and swelling that have been steadily improving over the past year.

On Tuesday during the visit with the radiation-neuro-oncologist, we learned that the affected areas in the brain are stable, there is no tumor activity and, in fact, there is some improvement in the post-treatment swelling.  A very positive report on the MRI.  

The Melanoma physician also had good news - the CT body scans show no evidence of tumor activity - the melanoma team is very happy with the response to immunotherapy.  At this time, they are estimating that the immunotherapy will continue for about a year.

Two weeks ago, Rusty had two motor seizures.  We were in communication with his three primary physicians at MDAnderson and the neuro-oncologist instructed us to increase the dosage of Rusty's seizure medication.  We did so and while he had no further seizures, he began to experience balance, coordination and energy problems.  He was very fatigued and walking was almost impossible.  The docs agreed that Rusty had not tolerated the increased dosage well, and at this visit, they decreased the dosage to what it was before the seizures. They will continue to monitor him and work to find an appropriate medication regime.  No-one is exactly sure what is causing the seizures, but they are following him closely.  Radiation to the brain, while destroying tumor, can cause such problems.

Rusty had his usual monthly immunotherapy infusion after the doctor visits Tuesday.

 Skittles and the Chronicle make the infusion time pass quickly

Nurse Ratchet

Summary...a very positive visit!!!  We are so grateful for this institution and for the people who make such a difference in the lives of patients and families coping with cancer.  We are also deeply grateful for our family and friends who have stood by us, prayed for us, loved us and supported us on our journey with cancer...thank you, thank you, thank you.

 Seafood lunch on the way home to celebrate the good reports!

 Our chariot and mobile hotel room

Greta is glad to have Rusty home

Short sweet visit to MDAnderson this time...in and out in five hours on Tuesday, April 9.  

After lab tests, Rusty had a "48 Hour Holter Cardiac Monitor" attached.  The purpose of this monitor is to track his heart activity for 48 hours.  Both last visit and this visit he has had an extremely slow heart rate, and this monitor is a precautionary measure to insure that his heart is in fact healthy.  We will remove it at home on Thursday and Fed Ex it back to MDAnderson where the cardiac clinic staff will read the results.

The melanoma team pronounced his lab work "good" and approved him for his regular immunotherapy treatment which took about an hour.  Next month he will have complete body scans again.

To add insult to injury, about two weeks ago, while bending over to give the dog water, Rusty was stricken with severe back pain, fell to the floor,  and could not move.  I called EMTs and they took him by ambulance to the ER where a CT scan clearly showed a slipped disc.  They treated him for pain and we have followed up with our PCP who is treating Rusty with pain med and exercise.  It has affected his left leg and hip, resulting in more leg weakness, more balance issues and dependence on his walker for ambulation.

In spite of all this, his spirits remain good, and he is grateful and hopeful, as am I.

We stayed this time at the beautiful new home of Carolyn and Bob Morley, just outside of Houston this time.  Had a wonderful visit.  I forgot to take any photos - I promise to do better next month!  

Your prayers and good vibes are working!!!!...and we are thankful.

We left Corpus Christi on Monday for Rusty’s March MDAnderson visit.  Good trip up with a bonus visit to Brazos Bend State Park for a picnic lunch.  

Just for a little added excitement, as we were parking the travel trailer at the RV Park, Rusty had a small motor seizure…first one in nine months…we know that these seizures happen as a result of the radiation to his brain, and they are not terribly serious, but Rusty was quite discouraged because the seizure resets the clock for his resuming driving.  Under Texas law, he must now wait at least six months to resume driving.  He has not driven since January of 2017 and it has been hard on him.

Spring is arriving in Houston

After routine lab work he saw both the melanoma team and the neuro-oncology team.  The melanoma team was pleased with his overall condition.  He will not have another set of scans until May.  This team must see him every month to assess whether his condition is stable enough for the monthly immunotherapy…as usual, he was approved for the infusion.

During the melanoma team exam, they did find that his pulse was extremely low.  Within minutes they had scheduled and completed an EKG, and found no heart problems – he was cleared for treatment.

The visit to the Neuro-oncology team was better than we expected.  The neuro-oncologist was not worried about the seizure, and, on examination, found that Rusty’s neuro status has improved since the last visit three months ago.  While he still has some bouts of confusion and memory loss, the episodes are shorter and fewer.  His left sided weakness is gone and his muscle strength is symmetrical and good.

Infusion was non-eventful, so we did a little happy dance leaving the Main Clinic.

We topped off the good day by meeting Cadge and Bob for Italian dinner at D’Amico’s to celebrate Bob’s birthday.  We are so blessed by good friends and we thank you all for your prayers, support and love.