Therapy update

According to Dr. Neuro-Psych, all of dad's therapy is going well and he is making good progress. His current therapy regimen will continue at least through December. Importantly, dad is very positive and has expressed his satisfaction with his progress. He says today he is feeling good. :)

Still no answers on the seizure medication issue, but mom's working on it.

Dad has a new full-time, permanent caregiver. His name is Joseph and him and dad seem to have really hit it off. We had a feeling that pairing him up with a man would be good for him. I think the camaraderie alone is wonderful, not to mention that this guy is really dialed-in to helping dad with his therapy. Win win.

Seizure (over)medication

Here is an overview of dad's seizure medications and how they are changing:

Was taking:

1. 2,000 mg of depakote
2. 2,000 mg of keppra
3. namenda (a memory enhancing drug used primarily for Alzheimer's patients)

The current plan:

1. drop namenda completely, cold turkey
2. decrease depakote dosage by 500 mg each weak until completely weaned off
3. continue keppra as is

This change in medication began 8 days ago. In the past day or so, he's started exhibiting some strange, possibly seizure-like behaviors. Mom's trying to get docs on the phone to find a possible explanation and remedy. I'm going to see if my new friends in the Brain Trust oligo online support group might have some insightful info for us.

No one has ever asked me what it's like growing up with a brain injured parent. Maybe it's because no one in our life understood, or wanted to understand, the severity of what had happened to my dad's brain. We hear cancer, we work towards remission, then we do our best to forget about it and never talk about it again. Well a brain tumor is not your typical cancer. The tumor can't just be "dealt with" because the tumor invaded the very core of that person and stole a part of their being, their identity.

Would I have wanted dad's tumor located in a different area of the brain that could have left him speechless, paralyzed, deaf, unable to walk, or worse? We all say he is "lucky" that it destroyed his right frontal lobe. "Nothing important is there," they said. "It won't leave him with significant deficits." But let me tell you what's in that 'unimportant' area. The frontal lobes:

• are our emotional control centers and home to our personalities
• are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement and impulse control
• allow interpretation of feedback from the environment
• house attention and memory capabilities
• control social behavior

I don't want to be depressing. But there's a small part of me, an inner-child, who is still trying to fully grasp that there was a reason, a clinical reason, why my dad behaved the way that he did during my/our tender years. We've been aware of the brain tumor/brain damage fro 20 years now, but it most likely was growing, invading, damaging my dad's precious frontal lobe for decades before. His personality, his behavior was not monstrous. I've known those who have endured far worse. But if I could do something so childish as to wish for things to have been different, I wish for life without a brain tumor. I wish that he could have expressed on the outside who he is on the inside. I wish that the harsh words could have been soft, loving, sweet. I wish he could have hugged more and yelled less. I wish for him not to feel angry, but to feel peace, love. I wish for him to be healed as my heart has been healed. God has given me the ability to love him unconditionally and when I look at him I don't think of these memories any more. I plainly see my dad, his imperfect self, a loving, intelligent, talented man, a fatherless boy who is still somewhat trapped inside, yearning to be more than his brain injury.

Big meeting with Dr. Neuro-Oncologist yesterday. I'm tardy with my report because I'm sick. (Ava's escape this cold unscathed, but I'm a wreck...) Here's a quick recap:

• Dr. thought that dad's current condition is symptomatic of Parkinson's. (Not something we wanted to hear...) But mom told her she is confident that these symptoms -tremors, rigidity, little blinking and lack of emotion outwardly) are drug induced because he's so highly medicated. She agreed to taper off the seizure meds a bit and stop another memory drug they had him on. This is good news for dad. He's deserves a break from being so doped up.
• On November 29th he will have his first follow-up MRI to see what the situation is up there (hopefully nothing). They will meet with the Dr. immediately following and will assess the need for chemo at that point.
• It was confirmed that dad's tumor has a genetic marker that indicates 1-great odds for long-term survivability and 2-would be treatable by chemo if necessary (not all brain tumors are sensitive to chemo). These genetic markers were discovered in the last decade, one of the many scientific achievements that have taken place since dad's diagnosis in the 80's. For more info, check out http://jco.ascopubs.org/cgi/content/full/18/3/636?eaf.

Overall, the feeling after the appointment was positive. Jenny was able to attend as well. She finally headed back to LV tonight after 10 days with mom and dad - what a trooper.

(cough, cough.....I'm off to bed.)

We may stumble, but we press on

Some falls are painful. Some may leave a scar. Others are emotionally painful. Such is the fall my dad experienced today. Although it left him a little bruised and with 5 stitches over his eye, for a moment it felt like a punch in the gut, to all of us.

This morning dad was sweeping the walkway in front of the house when he decided to get out the hose and clean it a bit more diligently. Unfortunately, somehow he stumbled over the hose and fell forward, breaking his glasses. Poor dad. Mom and Jen were in the midst of preparing the house to be shown by a realtor, but had to spend the morning in urgent care instead. He is doing well, not in too much discomfort and is getting new glasses this week. Needless to say, it was a reminder that he still has a long way to go. (This was the second fall since he's been home from the hospital.)

We each have our faults, our weaknesses, our shortcomings. But we each also have the ability to affect how we behave and react. I may not be able to control the fact that my dad suffers from this horrible disease, but I can control today, what choices I can make today to help make his life better and my family's life better. If I say that the situation is dire, too stressful, depressing, then I will react accordingly and it will become a self-fulfilling prophecy. But if I choose to see the good, as convoluted as it may seem to be at times, then I can press on.

Dr. Jenny

I think my sister is on the cusp of an epiphany, and if not, she should be. She is doing a fantastic job stepping in to the role of healthcare and therapy advocate for dad. I am so proud of her. She might have found her calling. After I left, I kind of passed the baton on to her, and boy has she ran with it. We are trying to parlay his therapy into his everyday life as much as possible, and Jennifer is making sure that every moment is a teachable moment. She is organized, determined and compassionate.

Here's a picture of dad's white board, which he wrote down his daily activities. They're working on getting him assimilated with a planner, with the goal of getting him to use a PDA at some later juncture.

I received a nice email through the online support group from a man in Australia. He reminded me that the abundance (or over abundance) of seizure medications not only suppresses seizure activity in the brain, it suppresses a lot of normal activity too. So much of dad's current condition is a result of the high levels of seizure meds, and, as this man put it, having egg beaters whirled around in the grey matter. It takes 6 months to a year just to recover. All this I know, but need to be reminded of. Time and patience are of the essence.

Today I finally joined an online support group specifically for those affected by oligodendroglioma brain tumors. I'm looking forward to learning and sharing. I've read so much about other people's experience that I am constantly reminded to be grateful for dad's current recovery and the health of my own family. It's a blessing that should be acknowledged every day.

A big step

The docs (literally) pulled out the feeding tube today. Yahoo! He said he didn't feel a thing and it was over in a flash. (I was a little disturbed to hear that it was about 2 feet in length....not a nice visual...) He didn't need any stitches or anything special. It will just heal up on its own. This was a really big deal for dad and I'm elated at this milestone. He called me right after and we had a nice chat for some time. I've been perusing medical journal articles to see if there's anything of interest that I can add to my growing library of brain tumor knowledge, and he asked me to re-cap what I'd learned today. I recounted a case study of woman who was treated for status epilepticus at Barrow, similar to dad.

This picture is of dad completing a puzzle. We've practically strapped him to this chair in the kitchen where he has been instructed to play games and work on activities, all for the greater good of his therapy.

Today he had speech language, occupational and physical therapy. Since he's an outpatient now he has a whole new team of Drs./therapists and they will all be meeting soon to discuss is progress and give us an idea of how long this level of intensive therapy will continue. We are all very proud of his hard work and how far he's come.

I just wanted to say thanks Dad for a great trip to Phoenix. Ava and I really enjoyed spending time with you and mom. I'm continually inspired by you.

Quick update - Dad is slated to get his feeding tube removed some time this week. This is great news because 1- he doesn't need it anymore, 2- it causes him pain, and 3- mom has to inject it with water daily to keep it clean and it's kind of unnerving to watch, although he says he can't feel a thing. Another milestone on the road of recovery.

Back to the Blog

Ava and I returned home late last night. We had a great visit, but it was tiring for us both. Here's my recap...

Dad is doing well, although he's tired of people telling him that, or telling him how good he looks, because he's still in the process and has along way to go. I'll be honest and say he's far from the man that he was before this happened, but at the same time he is. He might be weak, at times fragile, need assistance with things we all take for granted, and slow to speak, but he is also struggling to let the "real Lowell" out. If you have enough patience, you can see that he is still the same, you just have to be willing and able to see through the haze.

I was able to attend a few appointments with him at the rehab hospital. I was trying to learn as much as I can to help translate his therapy to his everyday life at home. He may only attend therapy for a few hours a few days a week, but we can become our own "therapists" at home. One of the docs agreed that the therapy has to happen at home as much as possible. For example, the speech language pathologists had him do an activity with playing cards. So I got him a few decks of cards and he can now practice it at home. She said playing games was good so I got several games to play, all of which he did really good at, albeit sometimes it's like watching paint dry playing checkers with dad. (He takes a long time contemplating each move!) It was REALLY fun. Playing games was kind of our thing when I was a kid.

During a long drive to his favorite trade-in book store (where he bought a clasic hard-bound edition of Sea Wolf), we had a candid talk about what happened. It's difficult for him to grasp because A) he doesn't remember and B) his short-term memory isn't so great, so he has a hard time holding on to what has already been explained to him. In the words of Dr. Nuero-Psych, it's scary when others have memories of something that happened to you, but you don't. But since his brain was "interrupted," it did not have the ability to make memories. (We've gently told him that he should be grateful that he doesn't remember....) So we had a long talk and I went over the details of what happened. My plan is to write it in essay form for him to read and re-read whenever he feels he needs to.

Jenny is arriving Saturday for a 10-day stint. My next task is to document everything I learned and my ideas for his care/therapy and pass the baton to her.

Busy Baby

These glasses are from Ava's doctor kit, which she brought along in efforts to help care for grandpa. Funny thing is that dad keeps putting them on for a laugh, which is exactly the response he gets from Ava. It's pretty cute.

Mom and I have had an interesting time reviewing the stacks of bills and explanation of benefits that are pouring in now that dad's home. Many of the bills are from doctors that we've never even heard of or remember meeting. The bill from just the neuro hospital (not including the hospital he was first at or the rehab hospital he was at a month after) clocked in at $270,000+, and this does not include doctor professional fees or all of the pharmacy. Good news is that dad had just started Medicare in June and they purchased a supplementary insurance plan, without which would have left them in dire straits. In fact, the old insurance he was on would have left them in that same position. So it is kind of a blessing that this happened after June, and not before.

Live from Phoenix

Sorry for my tardiness. The computer at mom and dad's is located in the guest room, and Ava's a pretty light sleeper when we're on "vacation" so there could be no typing during my usual evening blog hours.

This photo was snapped yesterday on our way to an appointment at the rehab hospital. And let me tell you, Dad was MR. POPULAR. During my tour of the facility, several nurses shouted his name in joy and came over for a hug and to praise his remarkable recovery. He even has made friends with a patient, a very nice woman with whom we chatted with for awhile.

Mom and dad attended a touch-base meeting with a psychologists (who informed me I was not invited because of my toddler-in-tow). This doctor will meet with them on a regular basis to make sure that all of his needs are being met through his therapy and that they understand each step as he progresses. As I've mentioned before, some of the therapy can seem remedial and be frustrating, but it's important to be reminded that this therapy is helping to build "new pathways" in the brain, circumventing the broken and damaged areas, so he can be good as gold again.

Ava's doing a great job keeping everyone entertained. She's been making her way through the kitchen cabinets, seeing what she can find for amusement. Soon she was making her way to dad with this colander and it quickly became a fencing match. On guard!

I'm very happy to report that dad is much better than I anticipated. He practically doesn't need any assistance getting around (the walker is gathering dust), he eats very well, and he's easy to talk to. He's still slowed down from his usual self and sometimes the words are hard to find, but I'm confident all of this will continue to improve. Today we're going to get his medication levels checked. This is significant because he is on massive doses of seizure medications, much greater than he's been on before. These high levels may not be necessary and at these levels they most likely significantly contribute to his slow motion and prominent tremors, which make small tasks difficult. (He had hand tremors for some amount of time after his second surgery, but got better over time. This time they seem a little stronger.)

As I mentioned a few days ago, dad has a caregiver that's here to help when mom is at work. She was here yesterday for a few hours. I talked with her for some time and I found her to be a lovely woman. She made cookies - an easy route to dad's heart.

Nice shirt, pop. See you tomorrow. I'm looking forward to checking out your new spiffy haircut, as well as all your other fun stuff, like the tube through your abdomen. Should be educational and fun.

More from Phoenix tomorrow.