Relay For Life

I signed up to participate in the local Relay For Life, a fundraiser for the American Cancer Society. You can check out my fundraising web page at http://main.acsevents.org/goto/darcy.rocha. Thanks!

Oh Happy Day

Even though Palm Sunday is a solemn day, I have fantastic news to report. Mom and dad have an accepted contract on a home here in Rockwall. It's even WAY better than the one they were supposed to get a few months ago. This house, and the neighborhood, couldn't be more ideal. I know they are going to love it. There will be so many things to keep dad busy, too. It has a nice yard with a big covered deck, a creek that runs behind the house, an adjacent green belt, walking paths through the neighborhood, parks, a community pool, and access to the lake. It's in a private neighborhood that also is home to a local private yacht club. It's only 4 miles from our house. The house is just the right size and the floor plan is perfect. Attention Oregonians, start making your travel plans now! It will be so great to have visitors!

A-ok!

MRI today was clean as a whistle, including perfect arteries in the brain. Hygroma is holding steady, but is no worse. They don't anticipate any treatment for it. Dr. said he was doing amazing and he won't need another MRI for 4 months. Way to go dad!

In other strange twist, Bo, mom and dad's 14 year old Bichon, is having seizures. Maybe dad will have to share some of his anti-consulsant drugs with him...

Stumble

Dad had a little stumble yesterday when he was out front by himself. He tripped and fell into the gravel in the front yard. And even though he is now better able to get himself up when he kneels down (or falls), since he was in the gravel he couldn't get up. He fell on the ring of keys he was holding, which included the truck key with the panic button. Apparently it made the truck horn start blaring, so mom came out to see what was going on. I kind of imagine dad like a little beetle stuck on his back, not able to right himself. So mom, with all her might, was able to help him up. He wasn't really hurt, although he has a little bit of a sore back. When I called today to check in, he told me the story. He is much easier to talk to on the phone now, except for the long pauses when I wonder if he's checked out of the conversation. I have to remember to be patient and let him finish because now he will, whereas a few months ago he would stop mid-sentence and just kind of check out, forgetting that we were having a conversation. For most of the past 20 years, I remember him being kind of slow in conversation. But I can definitely see how that's been exacerbated by the last 2 surgeries.

On another note, I forgot to mention that our wonderful family friend Caroline took almost a full week out of her busy schedule to go to Phoenix to visit with mom and dad. I know that dad holds a special place in his heart for Caroline and it meant a lot to my folks that she came. She was very motivating to my dad and was able to give them lots of pointers about selling the house, since she is a PRO realtor. :)

Therapy Graduation Day

Today dad was "graduated" from the out-patient rehab hospital. We had just integrated him back into their system and he went through all the evaluations as necessary to start back up. Apparently he scored very well on all of them and the therapists felt that his needs had been served and he can keep up his daily therapy activities himself at home. Frankly I was a little surprised that they wanted to cut him loose, but we can certainly add this to his list of accomplishments.

Still no word from Barrow's interdisciplinary tumor board as to what they found on his last CT. Supposedly, Dr. Short-on-Words Neurosurgeon was not at the meeting, so they were not yet able to review his case. (Don't worry about Dad people...take your own sweet time.....*sigh*) His next MRI is scheduled for Wednesday and will include an arterial scan. This will be immediately followed by an appointment with Dr. Neuro-Oncologist who will personally review his scans and hopefully report more good news.

In other real estate related news, mom and dad have had another offer bottom out on their house. As with the last, the potential buyers lost the sale of their own home, bringing everything to a halt. Fortunately, this happened early on this time. A final counter offer had yet to be executed. One of these days they'll get out here to Texas....

Status report

Still no definitve word about the finding on the last CT, but we're on the countdown to MRI on the 12th. Hoping all is status quo. On the bright side, he's been integrated back into the rehab system.

Update

Over the past few weeks, dad had been having some motor skill issues when he would get tired. Mom says that, for instance, after about half-way through their walk through their (tiny) neighborhood, he would start slouching over to the left and needed her help to make it home. But, mom says that he seems to be doing better recently, and he says he feels better. None the less, he had a CT scan and an appointment with Dr. Neuro-Oncologist today. Here's the shakedown:

1. The CT shows a *possible* clogging/blockage of the main artery that supplies blood to the brain. She will present his scans at the Barrow (BNI) tumor board tomorrow where all the specialist docs will discuss and make recommendations.
2. His next MRI, scheduled for March 12th, will include a closer look at this artery.
3. She feels that it poses no immediate danger.
4. She is encouraged by his progress and feels he is doing well.
5. The hygromas (fluid-filled area in the tumor cavity) may be doing a bit better.
6. He's been given orders for a whole gamut of blood work to make sure everything is A-OK.
7. She has started the ball rolling for him to re-enter rehabilitation, which was shot off course when they were going to move.

I'll post more tomorrow, when hopefully we'll have a bit more information from the tumor board.

(Maybe I should have given up worrying for Lent....)

PS- The post below was actually a short essay I wrote to be included in a collection of brain tumor experiences. A woman in the BrainTrust online support group is compiling stories from different perspectives, and is hoping to have them published.

The Dichotomy of Dad

di·chot·o·my - Division into two mutually exclusive, opposed, or contradictory groups: a dichotomy between thought and action.

“Count my staples.” That was the first thing I remember him saying to me when I arrived home from camp. His craniotomy was a few weeks prior, but I’d been shipped out until then. I was so scared and nervous to be near him. And here I was, just barely twelve, anxiety-ridden and alone with dad. Our relationship had always been difficult –marred by irrational anger and frustration.

His full head of thick, almost black hair was half gone, replaced by a fresh scar spanning practically the entire width of his (former) hair line, covered in railroad track fashion with large staples. The red gash above his eyebrow was still visible, the remnant of a seizure that brought his strong frame tumbling down to the edge of a pool. I can still remember looking in his eyes and trying to talk to him to see if he was ok and again they fluttered back into his head and he fell backwards, coming out of it moments later with only a slight concern that something was wrong. My sister and I had missed the first big event that marked the discovery of the right frontal lobe brain tumor – a grand mal seizure in our living room. My mom thought he was having a heart attack and pounded on his chest so hard he was sore for quite some time, and the incident was thereafter told comically over and over again, to mask the unrelenting anxiety that pervaded our household.

And so marks the beginning of my journey with my dad’s brain tumor…or at least the point at which he was diagnosed. As far back into my childhood as I can remember, my dad was angry, tense and unable to show us love in the ways we all desperately needed. We were afraid of him, partially because we had developed hyper-sensitive tendencies and partially because we never knew what to expect. I vividly remember being so afraid and anxious when I would hear his car pull into the driveway after work that I would automatically try to run and hide. I had panic and anxiety attacks starting at about age 7 and always felt abnormal, especially being around other "normal" families. Back then we had no idea what a profound affect his tumor was having on his personality, cognitive abilities and emotion, and the mark it would ultimately leave on our lives forever. In all likelihood, the tumor had been present and growing since his childhood, only symptomatically expressing itself through seizures when he was 42.

My dad recovered from his first craniotomy remarkably well and was back to work in a few weeks. He tolerated his doses of radiation, although his gorgeous mane never would return, leaving his large, unsightly scar on display for the world to see. Every once in a while he would struggle to find a word, and would jokingly say that “they must have took that part out.” Life continued to be stressful and family life plodded along unhappily, but we all buried our heads in the sand and pressed on in denial until the tumor (or lack thereof) became an after-thought. Ten years and more passed by and we learned to forget the tumor.

As I became an adult, my relationship with my dad improved by strides, especially when I moved out of the house. I looked less at him as an adversary and more as a kindred spirit. He had lost his own father at the tender age of 11, the only person that he seemed to truly love and respect. I knew that deep down he felt a similar love and respect for me, even though it was hard for him to express. We found companionship in our ideals and I made the investment in fostering our connection. Still, times with him could be very difficult – his frustration at simple stressors would make him very uncomfortable to be around, not to mention the embarrassment of some of the inappropriate things that he would say to our family or even strangers.

At the end of 2004, 16 years after his original diagnosis, the seizures returned suddenly. Emotionally I felt like I had slammed against a brick wall. I had let his disease dwindle to a faint memory, something I never thought I would have to meet face to face again. He endured his second brain surgery, but this time it left him dampened enough that he had some noticeable deficits and would never be able to return to work. Although it turned out the seizures were being caused by a build-up of scar tissue in his brain and not a new tumor, it was just as traumatic to his body as if it had. I adopted a new motto, “MY DAD IS MY HERO.”

As the months passed, things improved, slowly but surely. My dad walked me down the aisle. He held my newborn daughter, his first grandchild. We became closer than ever.

In the summer of 2007, he was back in the ER with uncontrollable seizures, this time forcing his delicate brain into a seizure coma – status epilepticus. The only way out was another surgery. This time he couldn’t escape the tumor. Oligodendroglioma grade 2.5, scoring the exact same ranking as it did 20 years prior. The surgeon successfully removed all of it, but leaving him with almost his entire right frontal lobe missing. It took him weeks to come out of the coma. It took him months to regain enough strength to leave the hospital. It will continue to take him years to recover, although I’ve come to accept that a lesser degree of recovery might have to be accepted.

But fortunately I am an adult now, and not a child. I have control over the information and knowledge I can attain and the role I play in the process. And as an adult I can see this experience from many angles, not just the childish victim of a brain damaged parent. I can appreciate the blessings that can be gleaned and understand the gravity of what may possibly lay in the future.

My dad is a dichotomy –a sensitive, intelligent and appreciative person encased by his brain injury. The beautiful parts that I know are there are often opposed and overcome by the ire, frustration and rough language. Through knowledge and compassion I find the patience and clarity to love and be loved, for which I am truly grateful.

Status quo

Mom snapped this on a cool day when dad was bundled up outside reading, of course. She can barely tear him away from his books to do his home therapy projects.

He is still in kind of a holding pattern with the therapy because since he was officially discharged in preparation for the move (that didn't happen) it is a long, bureaucratic process to get him back into the system. He basically has to start from scratch (referrals, assessments, etc.) which is a waste of time and money, so they're kind of holding out for a possible move to happen in the near future, then the tedious start-up to therapy can begin here.

Good reminder

Functions of the brain's frontal lobes (cerebral cortex):

-How we know what we are doing within our environment (consciousness).
-How we initiate activity in response to our environment.
-Judgments we make about what occurs in our daily activities.
-Controls our emotional response.
-Controls our expressive language.
-Assigns meaning to the words we choose.
-Involves word associations.
-Memory for habits and motor activities.


Possible problems related to injury of the frontal lobes:

-Loss of simple movement of various body parts.
-Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee.
-Loss of spontaneity in interacting with others.
-Loss of flexibility in thinking.
-Persistence of a single thought.
-Inability to focus on task.
-Mood changes.
-Changes in social behavior.
-Changes in personality.
-Difficulty with problem solving.
-Inability to express language.

Sounds pretty familiar, huh? Just a reminder that dad has been a victim of brain injury to his right frontal lobe and has been since this tumor started invading his brain....which (considering the type of tumor it is) most likely was decades before we even first learned of it.

Moving setback

I'm sad to report that the move is not going to happen at this time. The buyers for mom and dad's house have had to back out of the deal, because the buyers of their house lost their financing. So that means that mom and dad have had to back out of the deal on the house here in Texas. It's really a shame, but hopefully they will have another contract soon, one that won't fall apart in the end. Unfortunately, it's just one of the things that can happen in real estate, especially in such a delicate market as this. Mom is going to try to get her job back, all the plane tickets have been suspended, and dad will be getting his caregiver back. We'll be patient and remember that what matters most is that dad is still doing ok. Everything will fall into place when the time is right.

Update

Dad's last therapy appointment in Phoenix was today. He is supposed to be on a flight to my house next Wednesday. I say supposed because there has been a slight hurdle to overcome with the move. I don't want to say too much, but we're hoping that everything can resolve itself and mom and dad will still be able to make the move here at the end of the month.

The therapists say that in order to re-start therapy here, we'll have to jump through all the hoops again, but they say he is making great strides and will continue to get better. I'm curious to see for myself. I've got everything all set up for him and Ava's looking forward to having her Grandpa read her stories. :)

I'm on the dad countdown. He'll be here on the 23rd. I can hardly wait. Mom and Bo will be here around February 1st.

Nothing new to report. Still the usual roadblocks - poor short-term memory, weakness, etc. He's still working hard every day though. As soon as they get settled, he'll pick back up his therapy over here. And as soon as he steps into our home, he will be working on his in-home therapy activities! (With the company of his little granddaughter of course!)

Git Along Little Doggie...

Just so you're all up to speed, mom and dad's house has sold and they have an accepted offer on a house out here less than 10 miles from our place. If all goes well, they'll be here by the first week of February. Dad's docs have all given him the ok to relocate and start up with new docs here in Big D. Plan is that dad will fly out here in a few weeks and shack up at our place, then Jose will fly out there to help mom with the drive.

Dad did very well over the holidays and despite overdoing it in the hot tub once, he's back to making progress. He told me that his therapists were commending him on his good work. He did go on to say something about one of the gal's big b**bs, but we've gotten used to dad's off-color remarks over the years and chalk it up to brain injury...or just acting like and old man. :)




Sony, Jenny, Mom and Dad

Sony, Jenny, Mom, Dad, Louis and Maria

No surgery!

Good... no GREAT news. Dr. Neurosurgeon says that surgery to drain the hygroma is unnecessary at this juncture. The plan is to continue to monitor the fluid build up during his regular MRIs. Currently, it looks no worse so he's comfortable with the watch and wait protocol. He gave dad the green light to move to TX and get acquainted with new docs here that can monitor his condition. Whew!

Doing good....

MRI is tomorrow at 6pm MST. Dr. Neursurgeon consult Friday. Could use your prayers and positive thoughts for dad. We're hoping the the hygroma is stable or better and he might be able to avoid another surgery at this time. PLUS, if he doesn't need surgery right now, it will make their upcoming move to Texas easier and quicker.

He had a routine evaluation with all of his rehabilitation therapists yesterday and they say that he is back on track and is improving. The last evaluation he had, just before his first post-op MRI, revealed that was showing regression is his rehabilitation. Those tides seem to be turning! Yippee!!

Two-steppin' to Texas...

Mom and dad are two steps closer to Texas... they have a contract on the house. More details to follow as things progress. If everything goes smoothly, they should be here by the beginning of February. Dad seems well lately, so we're hoping that the hygroma situation is stable and not going to cause further problems. Should have more details on that at the end of the week. MRI scheduled for Thursday.

Still waiting...

The verdict is still out on the hygroma situation. As far as I know, there will be another MRI and a face to face with the neurosurgeon around the 21st. But dad seems to be doing ok, so we're ok with the current holding pattern.

In other news, mom and dad are still in the process of trying to sell there house. Hopefully (fingers crossed) a buyer will settle on a good price and they can start heading out this way. Can hardly wait. :)

Argh.....

Still waiting to hear what the Drs. plan to do about the hygroma situation. Could be surgical, which we're not too happy about. But before we get freaked out, we're waiting to hear with Dr. Neuro-oncologist and what Dr. Neurosurgeon have to say about it. The tumor board agreed that it is a hygroma, not a hematoma (cerebral fluid, not blood). Our thought is that since the surgeon is being consulted that of course he's going to say surgery...that's what surgeon's do! But again, trying not to jump to any conclusions or put any carts before any horses before we have more info.

Trying not to be a Debby Downer, but dad is more tired, less verbal, more confused and more depressed, all of which could/can be contributed to the hygroma. This is hard to handle. I like steps forward, with no steps back. I wish more than anything that he could be happy, peaceful, unafraid. It makes me sad to think of how he must be feeling. We talked on the phone today and he was definitely not himself.

BUT, mom reminded me yesterday that we need to remember that dad is only 4 months into his recovery, and 4 months post 2nd craniotomy, at Jenny's wedding, he was still pretty loopy. I remember being in tears at the reception because his mental and physical state was difficult to accept, and one too many people had commented about how he "just wasn't the same" and I couldn't bear to hear it. But then I got married 5 months later and my dad walked me down the aisle (more like the brick walkway in my backyard) and danced with me in the rain on our patio for our father-daughter dance to "My Girl." He was in a great place at that point and I was so happy. Our family was even more joyous when just a few days later I learned that I was pregnant with Ava. I digress, but it makes me smile to remember how happy we were. I'm very proud that I could give my dad such a wonderful gift - to make him a grandpa. And he loves Ava so much and he's so sweet with her. These are the joyous gifts that I should remember at times such as these.

More info

The brain fluid issue is called subdural hygroma, I think. Here's what I found online. I read that it can arise as a complication from craniotomy. I will be glad to hear from Dr. next week how they plan to treat this. Oye.

Tonight I set up our (faux) Christmas tree. It reminded me of the many times I went with dad to cut down our own tree, an Oregon ritual. That was always fun. Once we got it home, it was dad's job to put it in the base (for which he had invented his own system that included rocks, a two-by-four block and a drill!) and put on the lights. Of course, being the perfectionist that he is, the tree was always very solid, perfectly straight and lit precisely and evenly!

All Clear

MRI today showed no new growth. Dad's in the clear. Dr. said that they're a little concerned about a build-up of fluid around the brain, and will discuss with the tumor board at Barrow. We'll know more about that next week, but she said not to worry about it too much. Rehab staff reports that dad has regressed a bit in the past few weeks. Dr. today said that may be due to the fluid issue. The important thing here is that there is no new tumor. WHEW.

On another note, I feel like my postings are reducing dad to his tumor- meaning I need to honor him for the man he is, not just a brain tumor victim. We all have wonderful stories and memories of dad, so I'd love to share those, if you're willing to share them with me. I'll start.

My dad has always been one of my biggest supporters. Maybe back in the highland dancing days his support came across in a way that didn't really translate well with a child, but as I grew, and we grew closer, he showed me how much he cared for me by caring about the things I was doing - choir, pageants, Irish dancing, PR, PSU, etc. He was my "date" to my inauguration into Golden Key National Honor Society. He wrote me my own rap song and left it for me backstage at Miss Oregon. He came to church (I know!) to hear me sing. He even attempted to learn to dance at one of my Irish dance lessons at the Irish Bank (poor mom!). And once he sent me an email from Tucson after I had a breakup that was a want ad that he wrote for me....to find a new boyfriend. It was really funny, but the greatest part of it was that I could tell that through his humor he seemed to really understand me and was proud of me.

Now I want to hear from all of you. I want to collect thoughts on my dad so Jenny and I can understand him better, and so we can celebrate dad for being more than just the "guy with the tumor!" Email me at darcyrd@hotmail.com.

First follow-up MRI is tomorrow at 2pm MST. Appointment to evaluate results with Dr. Neuro-onlcologist with follow immediately. Dad's a little nervous, but we're confident everything will continue to be Okey-Dokey. :)

Chicken soup....sort of

Dad fell again yesterday. Although he was not injured, it was discouraging for him. He sounds a little down, so since I can't be there to give him a hug or make him some chicken soup, I'm sending my Ava's sweet laughter to cheer him up. I love you dad. Keep up the good work. :)

Lucky Lowell

Even though I am sad for the ways in which my dad (and our family) has suffered because of his brain tumor, I am continually reminded through my interaction with others with brain tumors that dad is in reality extremely lucky, or blessed, or however you want to characterize it.

Being a part of the Brain Trust's on-line support group for people affected by oligodendrogliomas has been eye opening....and this is a group only for this certain type of tumor, not all brain tumors (ie the really bad one, GBM - glioblastoma multiforme). Dad is the anomaly of this group. No one (that I'm aware) is a 20+ year survivor. At times it's hard for me to be a part of this list because, quite frankly, it can be very scary and depressing. But I'm understanding more and more how fortunate dad is. Fortunate to only have a grade 2.5 tumor (on a scale of 1 to 4, 4 being the worst and fastest growing). Fortunate that the tumor is/was "close to the surface" in the frontal lobe (in that it didn't invade the areas that control his ability to speak, understand speech, walk, hear, etc.). Fortunate that he had seizures to indicate that something was growing (sometimes people are asymptomatic and the tumors aren't found until it's too late).

This glass is definitely half-full.

And, more importantly, I'm pretty sure dad thinks it's half-full too, and that certainly has not always been the case.

Dad looks so happy. Nothing's as good for your health and soul as your best friend.

They had a great time at the crater. Said it was too big to take pictures of.

Happy (belated) Veteran's Day dad!
(For those of you who don't know, my dad signed up for the volunteer draft during the Vietnam war and served his time in Korea.)

All's Well

Just a quick update to let everyone know that everything is going really well. Dad called me himself last night (on his cell phone even) to tell me that he was doing "really great." He said he aced all of his activities in therapy and was very pleased with his progress. It makes me so happy to hear how upbeat he is.

Big news is that Randy is coming for several days on Friday. Mom and dad are really excited. Dad's going to try to convince Randy to go for a little day trip to the Beringer Crater. Dad's wanted to go there for a long time. In fact, mom and dad had plans to go there the day that dad ended up in the hospital. I only wish I could go too.

The problem with the medication seems to be resolving itself. He still has significant hand tremors, but he seems more alert and clear on the reduced med levels.

Countdown to MRI. Praying for more good news.

Healing power

Dad got his stitches (from the gash above his eye) out the other day. Mom says he's healed up terrifically. He heals very quickly....after each surgery, his incision has healed up very fast. Maybe these same healing qualities have played a part in his body's remarkable ability to keep this tumor at bay. Hmmmm.

He also met with the cardiologist yesterday. (Remember the heart issues he had while in ICU?) Dr. said that he will have to take the meds for irregular heartbeat forever, but the blood pressure meds he could now do without. You should see his daily pill box(es). It's a handful of pills.

He got his new glasses today. His previous pair were broken in the fall. So now he's all set up with new fancy specs. Kind of a nice benefit I guess.

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.

Dad had a date today...with his new nurse. Mom's ok with it. I could make a joke here about Big Love, but I won't.

Mom says she's really nice and reminds her of Molly Gilpin. How's that for a blast from the past? But I've heard that those of you who know Molly aren't down with the Internet anyhow...fogies! (Couldn't help but to make that jab...)

M & D ventured out for a few errands today (I'm still surprised about that). Mom said dad didn't even use his walker at all the whole day.

I'm anxious to get there and see for myself all of this remarkable progress. I pledge to upload many photos and relay great tales of courage, perseverance and familial pride.

Oh, and dad gave mom a little pinch on the rear, so that confirms that life is returning to normal. AT LEAST IT WASN'T THE NURSE!

The Return on Lowell

HE'S HOME.

DAD IS HOME.

MOM IS HAPPY. BO IS HAPPY. ALL IS WELL.

Dad arrived home early this afternoon. He called me to tell me of his arrival and sounded GREAT on the phone. He's getting around well and requested roast beef for dinner. Mom spent hours at the pharmacy trying to navigate the insurance "nightmare" while their friend and neighbor stayed and visited with dad. He took Bo and walked across the street to get the mail...by himself, with mom supervising of course. But, WOW. Seems like a small thing, but this is a major step toward independence.

He starts his therapy Monday, and will only be three days a week, not daily as I thought it would be.

Mom briefly showed him this blog. At some point I guess he'll sit down and read it. Funny, but over the course of documenting this experience, I failed to think of what it would be like for dad to read my thoughts and the details of what happened. It might be a little awkward, but I hope it helps him better understand what he went through and how we felt about it. It's interesting that something that started as a necessary dissemination of information has evolved into (hopefully) a step in his recovery.

What's so funny 'bout peace love and understanding?

Alright dad! Show us your enthusiasm.

Only 2 days to go, or, as dad corrected mom today, only a day and a half. He's out of the rehab hospital Saturday AM. Today he passed his final swallow test, which means that he is allowed to have all liquids, which had previously been restricted. Guess he'll finally get that Pepsi that he's been requesting for the past month.

Sunday will bring our first visit from the home healthcare aid. This person will be the one to help care for dad at home until he is totally able to do so for himself, drive him to his therapy appointments when mom is at work, and assist in any other way that is necessary. Mom learned recently that their job description includes "caring for the caregiver" as well, including housework and grocery shopping. They'll even take dad to the movies if he should so desire. All of this is welcome and greatly appreciated.

I wanted to also pass along that tomorrow morning my Aunt Mary (my dad's sister) is having a lumpectomy to remove breast cancer. It's a road I'm sad she has to travel, but we're confident that she's going to recover quickly and we pray that the cancer has not metastasized.

On behalf of my dad, thank you for the cards and flowers. I know these gestures mean a lot to him. I'm counting down the days until Ava and I make our trip out to AZ once again and I hope that little Ava will be a source of joy to dad, and not cause too much trouble while we're there!

(For a refresher on Elvis Costello's take on Peace Love and Understanding, click here.) :)

Dad's still on track for discharge Saturday. Mom's busy trying to get details in place, like getting him a walker just in case he needs it and interviewing potential care givers. He's excited to come home and I'm sure Bo is ready to have his doggy-daddy back.

In other news, dad still needs to pass one more swallow test to be cleared for liquids. Right now all his liquids need to be thickened in order to prevent any possibility of aspiration. Only a small hurdle that I'm sure he will clear with ease.

My goal is to draw on this present situation to learn more, support dad (and the family) better and possibly reach out to other families in similar situations. I had a great conversation today with a social worker from the Brain Tumor Society that oversees a program called COPE that matches up families affected by brain tumors. She's going to help us connect with other people who have had an experience similar to ours so that we might learn from them. I'm also looking into the T.H.E. Brain Trust and Grey Matters. Next week I'm going to try to attend a Dallas-area Grey Matters support group. This is the same group that organizes the support group in Phoenix that mom is making an effort to get plugged in to. Then it's off to Phoenix to see my dad!

Weekend Update

Did you like the "movie" (below)? I thought it was a riot. Hopefully dad will like it. :)

Dad had a good weekend. Mom has been busy beginning to make arrangements for his arrival home next weekend. Like I mentioned before, his out-patient therapy will commence daily. He will need someone to help him at home and provide transportation to his appointments while mom is at work. This means that they will be hiring a home healthcare provider. It's a lot of information to sift through, but mom has done a good job seeking out the best options for dad. And, importantly, he seems receptive to this continued care once he is home. Mom's already dealing with insurance chaos, but so far it seems to be under control. (I think that sentence is completely contradictory...)

I'm going to make an attempt to get plugged into some of the support groups here in Dallas. Grey Matters, a group that holds meetings all over the country, meets in the Dallas area at another Health South Rehab hospital, just like where dad is in AZ. Mom and Jen attended a Grey Matters meeting last month in Phoenix, at the neuro hospital where dad was treated. I think it's therapeutic for us all to be involved in these groups.

Comic Relief

Star in Your Own JibJab! It's Free!Yes, this IS what life is like in Texas.!

10 days

Target date for dismissal from in-patient rehab: September 29th, only 10 days away. Woo hoo! (Also, *heavy sigh*, because this means that although he'll be home, he still has a long way to go and needs a lot of care...)

I'm going to Phoenix in two weeks to help out. Even though he'll be home, he'll have a 3-hour daily appointment at the same rehab hospital to continue his therapy. Upon my departure, Jenny will come and take over. Then hopefully he'll be able to stay home alone and have therapists come to the house to continue, or we'll have to arrange for day-long in-home supervision by a CNA or something. Not quite sure what that would be. His doctors keep telling mom that basically someone needs to be home with him 24/7 and he needs to do all his rehab at a rehab facility (which is understandable), but this isn't exactly realistic because 1) Jenny and I aren't able to move in and 2) mom still needs to work. So now we're trying to find practical, real world solutions to this predicament.

Got to keep this short because I've got to go book my plane tickets and work on a little sewing project for dad. :)

Orchids so sweet

Jenny had asked dad a while ago what his favorite flowers were, fishing for ideas of what to send to him at the hospital. I think any one of us would have bet the farm that he would say roses. But instead, he said orchids. And my goodness - look at these! Beautiful orchids from his first-born. He was pleased as puddin'.

We talked again tonight. Apparently he was trying to tell me what he had for his meals today, but he talks so quietly I couldn't understand him one bit. Mom translated for me.... I guess he's been eating pretty much everything they've offered him, which is fantastic. And he's doing a better job of getting himself between his bed and wheelchair, and wheelin' himself around. I asked him if they're making him walk more and he said yes. Tomorrow we should have the oh-so-elusive target date for discharge from the rehab hospital, and hopefully an idea/plan of what his care/continued therapy will be once he gets home.

Yesterday he had a good conversation with Aunt Mary. Looks like they'll be bonding on a higher level now. The Cancer Club is not something you exactly want membership in. Unfortunately, she'll be joining mom and dad in that group, but, more importantly, we expect her to join the BEAT CANCER club very quickly. Tonight I'll say my Hail Marys for my beloved Aunt Mary.

Weekend Update

Short, but sweet.

Dad had a great weekend. Each day continues to be marked by progress. I talked to him today and this is the first time I can truly say that he sounded more like himself. It made me so very, very happy.

We should know his target release date by Wednesday. I'm hoping it will be soon so I can go to Phoenix and be with dad at home, instead of trying to keep Ava out of trouble while visiting him at the rehab hospital. But if we do go when he's there, Ava has her scrubs and stethoscope, so she'll be ready to play the part.

On a side note, congratulations to Randy and Debra on their nuptials. We all wished we could have been there to celebrate. Dad was very happy to talk to Randy yesterday. :)

Thursday

Dad's dinner was never so well deserved.

Today he passed his swallow test, with flying colors I might add. His reward was dinner - real dinner. Although he'll still have his feeding tube for supplemental nutrition for an undetermined amount of time, this is a huge step forward.

(This is a picture of dad with the flowers Jose and I sent him. He even called me yesterday to say thanks!)

Mom reported that the rest of his day was filled with equally-positive progress. He cycled on the exercise bike, walked more (with the walker, but that's only for balance until he's completely steady), worked out on the therapy stairs, and took a shower unassisted. Still do not have a definitely date for release, but one doc eluded that it might be sooner than we think!

In case anyone needs a quick recap of dad's history with oligodendroglioma, here it is. (Plus there's some info on the 2nd surgery that is pertinent that I keep forgetting, so if I put it in writing it will be more permanent.*)

1987/1988- Dad suffers a gran mal seizure and a growth is found on an MRI. Watchful waiting is followed by a few more "incidents" and marked growth on MRI. 1st craniotomy successfully removes all of oligodendroglioma grade 2.5, followed by several rounds of radiation therapy. Seizure meds required for years. He recovers so well that the brain tumor becomes an afterthought.

December 2004/January 2005- Onset of somewhat uncontrollable seizures leads to discovery of "area of enhancement" on MRI (growth). 2nd craniotomy reveals only scar tissue and some other damage to surrounding tissue as a result of previous treatment, but no tumor recurrence (leading us to assume that this was an unnecessary surgery that unfortunately had lasting effects on dad). Light therapy and seizure meds continue for about 1-2 years.

*I recently learned from Dr. Neuro Oncologist that the scar tissue that had grown into old tumor cavity- which we thought was harmless- was actually quite troublesome and in most cases always needs to be removed. It can cause nearly as much trouble as a tumor recurrence, pressing on delicate tissues causing seizures and other problems.

Present- Onset of left side weakness and uncontrollable seizures led to status epilepticus "coma." MRI again shows new "area of enhancement." Emergency 3rd craniotomy performed to remove source of seizures, which, left untreated, would/could have caused permanent coma/brain damage. Pathology shows recurrence of oligodendroglioma grade 2.5, although no further treatment is scheduled at this time. Seizure medications and therapy to continue indefinitely.

(I'm also recapping all of this info here in case another family affected by oligodendroglioma is out there searching the Web for information and could learn something from our experience.)