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...

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.

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.

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.

Rusty's status continues to improve....he has longer and longer periods of wakefulness and lucidity.  A team of neuro-oncologists assessed him Thursday to rule out small "absence" seizures and meningitis.  Neither has been ruled out, and they will do a Spinal tap today hoping for further clarification.  Meanwhile he is receiving IV antibiotics and anti-viral drugs.  In the words of his primary doctor, hopefully he has turned the corner.

The teams have also decided to do his complete set of "restaging" scans a month earlier than they would normally be done.  They started yesterday with a brain MRI which showed no changes from the one in August (Yay!!!!). Today will be CT scans of abdomen and chest and a physical therapy consult to start Rusty walking again.

He had the first of five radiation treatments to the upper right arm yesterday and will have the second today.

As Rusty's lucidity returns little by little, so does his sense of humor, his sarcasm and his independent nature...thankfully.  We cannot say enough about the excellence of care at every level here at MDAnderson.  In an institution brimming with persons dealing with illness, fear, despair and death on a daily basis, there is still joyful preparation for Christmas, music, graciousness and a spirit of generosity and sincere caring.

Thanks to Jeff, we have a room in the Rotary House Hotel, the hotel run by Marriot that is attached to the hospital.  Jeff and I take shifts, sleeping and being at Rusty's side.

Update on Rusty...

We spent most of the day in the ER waiting for an appropriate bed to come free in the hospital...not as bad as it sounds...the ER here has small private rooms for each patient, big enough for me, Jeff, Rusty, equipment and a place for a gaggle of doctors to stand.

Rusty was less groggy and a little more lucid this morning..fever was down...still no definitive explanation of reason for fever...best guesses are viral infection or side effects of targeted oral chemo.  They are treating for dehydration.  The mass in Rusty's right upper arm has changed somewhat and an MRI today revealed a tumor.  He will start the first of five radiation treatments to that area tomorrow...all the prep was done this afternoon.

After the radiation prep we were brought to Rusty's new room, G1042.  At this time the plan is to keep him for "a few days."

Jeff plans to stay with us as long as Rusty is in the hospital. We are hopeful, and we take great comfort in your support and love.

Need prayers, positive vibes and good thoughts.

Rusty is having a bit of a rough go right now.  He started running fever and feeling fatigued and sleepy last week.  After exams and testing our local primary doc could not find the cause ad referred us to MDAnderson docs.   Dr. Amaria, his primary Melanoma doc saw him yesterday and he is dehydrated.  By late afternoon it became clear that he was worsening and he was admitted to MDAndersn ER.  As of 8 AM we are still in the ER awaiting assignment to a room.  The physicians and nurses here are amazing, and they seem to be stumped as to the origin of the fever and fatigue.  Multiple tests being done.

Jeff arrived here at 9:30 last evening. Will keep you updated.