Friday, February 23, 2018

At Rusty's request, we are continuing to do our scheduled jewelry travel and shows, so prior to our Houston visit on Monday and Tuesday, we were in Hallettsville (about three hours from Corpus) for the February Hallettsville Market Day.  Hallettsville is now the third largest Market Day in Texas, after Canton and Wimberley, and they have a great RV Park right on the grounds!  Good sales and good time.




From Hallettsville we went directly over to Houston for routine appointments at MDAnderson.  The tumor mass in Rusty's leg has shrunk so that it is no longer palpable, so the team believes that the new chemo is being effective.  There is however, a new tumor mass in Rusty's upper back.  They will keep a close eye on the new mass, and are hoping that it too will respond to the new chemo, which includes an immunotherapy component.

Rusty had his chemo and immunotherapy infusion Tuesday afternoon.  It is a rather lengthy procedure because he also receives an anti-nausea infusion and each drug has to be given individually...they cannot given at the same time....Rusty usually sleeps through the infusions and I knit, read or walk the halls visiting gift shops.  These drugs really knock Rusty for a loop...he is very fatigued for the first week after infusion, and has little energy or motivation.  Red blood count dips low and blood transfusion may be necessary.  This was the third of four of these treatments.  He has been fortunate that, thus far, energy depletion has been his most serious side effect.

We left Houston Wednesday morning and came over to Bulverde, just north of San Antonio in the hill country.  On Saturday, I have a metalsmithing Master's Class here with a nationally known metal stamp artist.  We are in a rustic RV Park where we hope to have some R and R for a couple of days.

We plan to be back in Houston in three weeks...just in time for the throngs of folks in town for the Houston Rodeo.  Please know how much we appreciate your concern and support.

Tuesday, January 30, 2018

Back at MDAnderson yesterday and today for our three week routine visit.  On the prior protocol our visits were every two weeks and on this new protocol, visits are every three weeks for four times, then they will re-evaluate.  The new protocol, a chemotherapeutic agent "Abraxane" and an immunotherapeutic agent, "Ipilimumab", have, within two weeks of the first dose, caused Rusty's hair and beard to fall out...he is now a doppelgänger for his late father, John, and his son, John!


In scrubs (his "doctor suit") waiting for imaging.

CT scan yesterday revealed a cluster of melanoma tumors in the left thigh which, according to lab results and decreased pain levels, are responding well to the chemo.  He was assessed for possible radiation to the thigh, but the consensus is that since the chemo appears to be effective, and since radiation is palliative only, they will not do radiation at this point.

Rusty also had a brain MRI yesterday in preparation for a follow up visit with the neuro-oncology radiologist who performed the Gamma Knife surgery for two brain tumors in August.  One tumor is gone and the other has slight inflammation..."treatment related".  They will continue to follow and will repeat MRI in six weeks.

It is so reassuring to know that all these treatment teams communicate with one another during the days that we are here.  Each one confers with all the others prior to determining a course of treatment.

Generally, Rusty feels pretty good.  No more seizures since seizure meds were adjusted.   He has some intermittent short term memory loss and he is frustrated that he is not allowed to drive because of the seizures.  Fatigue limits his activities and is caused, in part, by the effects of bone marrow depression from the chemo.  He was reassured today that, once the chemo is finished, some of these issues should return to normal or almost normal.  The staff continually reminds him that he is 77 years old and should adjust his expectations accordingly.


When we leave Houston tomorrow we are heading east to Sabine Pass to spend a few days camping at Sea Rim State Park...exploring, walking, watching sea birds and taking long naps.  We'll be back at MDA in three weeks.  

As always, your interest, prayers, love and support sustain and comfort us.  Thank you.


Tuesday, January 9, 2018

Back up to MDAnderson yesterday afternoon to prepare for visits today (January 9). We had some anxiety because, since the encephalitis episode, Rusty had been withdrawn from the Clinical Study protocol, and we were sure about what the new recommendations for treatment might entail.  Since we had been told three weeks ago that there were new tumors, we were afraid that we might have to make some difficult choices...i.e. Quality vs quantity of life.

Happily, that was not the case.  The Melanoma team recommended a new, different combination of IV chemotherapy and immunotherapy.  Pending Rusty's consent it was scheduled to start today.  The chemo is intended to shrink or obliterate existing tumors, including the one in his leg which has limited his mobility.  The immunotherapy is intended to boost the immune system so that it recognizes and attacks tumors.   Immunotherapy takes some time (weeks or months) to be effective, but the chemo is expected to work immediately. Discussion of possible side effects was a little scary, but Rusty is very ready to begin the new regimen, and side effects do not happen in all cases.  There will be four cycles of the drugs, three weeks apart, then a series of scans to determine status.

 Jeff was with us again for this visit and the three of us were very relieved and grateful.  Rusty had the first of the chemo and immunotherapy infusions today, and we'll come back in three weeks for the next round.


Rusty and Jeff back at the travel trailer with take out ribs from Pappa's Barbecue.

Thank you for your prayers, messages and support.  I'll post again when there are changes or when we come back in three weeks.

Saturday, December 23, 2017

                                                                Corpus Christi bound!


Rusty was discharged from MDAnderson yesterday, Friday.  While he is still weak, he is lucid and mostly back to his old self.  Thanks to a most conscientious physical therapist he is walking with a walker and can get in and out of bed, chairs and trouble unassisted.  Jeff convoyed home with us and our first stop, after leaving Houston and its suburbs, was at our regular haunt, Prasek's Smokehouse, where Rusty really lit into a plate of ribs...making up for lost time!

Rusty is having some discomfort in the muscle of one leg and the doc believes that it may be a small cancer.  We are due back in the melanoma clinic on January 9, and it will be assessed then.  In the meantime, we can call in and go back anytime before then if he in having severe pain or problems.

There was never a conclusive decision as to the definitive cause for this episode of fever, confusion and lethargy, but he was treated for bacterial and viral encephalitis/meningitis, and well as for seizure activity.  In the event that the targeted chemotherapeutic agents he was taking daily were the culprit, those were discontinued.  An EEG did indicate some minor seizure activity, and he is now back on driving restrictions which is SO hard for him.  He is, however,  infinitely grateful for the outstanding medical care he received for these past 11 days, for his recovery, and for the chance to now be back in his happy place in Flour Bluff America!

Merry Christmas and Love to all of you...

Wednesday, December 20, 2017

As you can imagine, now that Rusty is feeling better day by day, he is itching to go home.  There is still no certainty as to what caused the brain swelling.  Bacterial infection and cumulative reactions to the targeted cancer drugs are still considered by all the doctors to be the most likely causes.  Rusty has been on massive doses of IV antibiotics for a week now and must continue them for two more days, so they are looking at discharge for Friday if all stays well.



Rusty continues to improve and is slowly getting back to normal activity level.  He still tires easily, but his spirit is strong.  Primary Melanoma doc and team will see him in clinic after the first of the year and then we will agree on a new treatment modality.  Unfortunately, the three drugs he had been on since February are, in the docs words, the best drugs they have for treating Melanoma, but given his recent neurological episode, he cannot stay on them.  They plan to try the next best drug regime for his situation.

Thank you so much for all your prayers, supportive messages and love...you cannot know how much that means to us.

Monday, December 18, 2017

Mental status continues to improve little by little.  All lab tests on the spinal fluid so far are negative...many are still pending.  Rusty has been fever free for 48 hours, and was up walking with physical therapist today.

Today was the 4th radiation treatment to the tumor in the upper arm. Inflammation in the radiation site caused some severe pain last evening, but the staff were diligent about pain medication and today the pain is way less.

                             "De-stressing" photographs lining the halls of the radiation unit.


Rusty's primary Melanoma physician, Dr. Amaria, paid us a long visit today.  CT scans taken on Friday reveal that there has been new tumor growth in the chest and abdomen.  Dr. Amaria says that the assumption is that the new growth is Melanoma and describes the tumor growth as "aggressive."  This, of course, indicates that the drug regimen he was on has ceased to be effective.  The tumors become "smart" (go through genetic changes) and resist the drugs.  He will no longer be on the clinical trial he has been on since February, and the team will attempt a new treatment modality for him, probably a combination of chemotherapy and immunotherapy.  They want him to recover fully from this recent brain episode before they start new treatment for the melanoma, and will wait until after Jan. 1 to make a final decision and start treatment.

So...we are back to the drawing board...taking one step at a time, still with absolute confidence in the medical personnel here at MDAnderson.

To compliment our new truck, we ordered a new travel trailer and picked it up on our way up to Houston last Monday.  She is an Imagine, a beauty by Grand Design, and is our Christmas gift to each other.  She will make our frequent trips to Houston much more comfortable.

Saturday, December 16, 2017

Spinal tap lab results are starting to come in and, while there is nothing conclusive, it appears that there is inflammation and possibly infection in either the brain or the meninges which could cause the symptoms Rusty is having.  They are bombarding him with IV antibiotics and anti viral drugs, trying to cover all bases while we wait for the cultures and other lab work.  It could be next week before all labs are back and we still may not have a conclusive answer.

In the meantime, Rusty continues to improve little by little.  He has longer periods of wakefulness and lucidity and has begun getting out of bed with a walker for short distances.  He is regularly surrounded by teams of physicians, practitioners, "fellows" and nurses...Melanoma team, neuro-oncology team, infectious disease team and radiology team, as well as occupational therapist, physical therapist, dietician, lab techs and IV team. We are waiting now for the melanoma team with results from yesterday's CT scans.

It is Saturday and Jeff will be leaving to go back to Corpus to play his part of a "party dad" in tonight's performance of the Nutcracker...Abby is dancing as a "party girl."  Jeff expects to come back tomorrow.  It really does help to have tag team care-taking.

I am OK.  I have gotten rest, I revel in each small improvement, and I am confident that we are in the best hands possible...God and MDAnderson.