Getting ready for the holidays

Things are going pretty well in Elkhorn; good thing, as the weather is keeping everyone buttoned up inside.  I can't wait to join the land of "The high temperature today will be:  2".  

Dad seems to be doing okay.  He's better than he was last week, but still sleeping quite a bit.  They're heading in on Thursday to meet up with the doctors to possibly make a medication change.  

When he's awake - watch out.  He's been dialing the rolodex like crazy, really enjoying catching up with friends and family.  If you try to call, leave a message as he doesn't always click over to answer the call-waiting.  

Overall - spirits are good, and everyone is getting ready for Christmas.  

Please warm those temperatures up a bit before I come in!  While it's 17 degrees in Portland (record cold snap), we haven't seen two degrees as a high.  I think ever.  ;)

A little better today. . .

Text messages were flying in during an all-day meeting today, with mostly positive news.  The medical crew in Omaha thinks this tiredness is mostly due to a reaction to the latest round of chemo, and it should go away in a few days.  Mom forced fluids today to try and combat some dehydration, and that seemed to help a little.  Dad wasn't as confused today, but still slept quite a bit.  Here's hoping tomorrow is better!

Not all of the days are better. . .

Just got off the phone with Mom, who said Dad is not doing as well today.  Not sure if it's the effect of finishing up the five days of chemo, or if the Ritalin isn't doing as good of a job anymore, but things aren't as good as they were even a few days ago when he was out to dinner a couple days with friends and playing checkers and CandyLand with the grandkids.

Dad's been getting a bit more tired and nauseous the past few days, which we attributed to the chemo treatments.  Today, he's quite a bit more confused, sleeping quite a lot, and not so steady on his feet.  Of course all of this started to really "gel" about 5:30PM local time, and since it's not an emergency, the early morning phone calls to the oncologist, home health nurse, and psychiatrist all happen first thing in the AM.

Hopefully this is just a wave caused by the chemo, and that he will be back up and on his feet tomorrow.  I'll try to keep the blog updated when I can.

A little better every day, it seems

I think I can officially go home without too much stress that there is a lot to do back in Omaha while I'm out in Portland.  Dad continues to get a little better every day.  He has more energy, is gaining back some weight, and is able to stay up the majority of the day (although there is still time set aside for a nap each day).

We saw the Oncologist today, and he was very happy to see the progress in just over four weeks.  He ended the appointment with a "good job, girls" - speaking to Mom and me about the persistence in finding out what was wrong and causing Dad to sleep all the time.  He started Dad on round two of the maintenance phase of chemo tonight, which will run for five days in a row.  He's tolerated it very well in the past, and don't think that this time will be any different.

We spent the evening with the Huff's - enjoying a bite to eat out, and then back to the house for all of us on the big couch to watch "The Grinch Who Stole Christmas" with the kids.  Of course I got the kids all wound up when I was leaving, just in time for them to fight bed time.  I'm sure Tracy loves it when I do that. . .but Auntie can't be good ALL the time.  :)

The clarity increases and the confusion lessens, it seems, each day a little bit more.  Who knows?  Maybe by the time I'm home for Christmas Dad will get his driving privileges back?   I think we'll let him drive the vacuum and the treadmill first to see how he handles that.

Amazing how much of a difference there is from the day I landed (Nov 8th) to today.  Night and day, to say the least!

Day After Thanksgiving. . .

Dad's doing pretty darn well for all of the activity the past few days.  Lots of family visiting, a lot of small kids running around, and quite a Nebraska game!  He's knocking off items on "Roger's List" to do pretty much without too much prompting.  He had PT today, and they will make the determination next week on discharging him from home health.

By the looks of him (see above) he looks great!  Still a bit weak and needs to rebuild some muscle mass, but overall the ritalin is still working!

Kari and the boys came out today; and Dad was finally able to talk with Eric (our dear friend that was hit by a car a few weeks ago as he was walking to the car after he finished a half-marathon in Dallas).  I think it was good for both of them to connect and share some war stories of pain meds, physical therapy appointments, and the importance of family!

GO BIG RED!

"Roger's Morning List" has been created

Dad's sense of time still seems to be pretty off-kilter. His "I'll do that in just a minute" turns into a few hours. So I've solved that, or attempting to solve it, with "Roger's Morning List." This piece of paper consists of things he needs to do on his own, without prompting by Mom or me. On the list includes things like making the bed, showering/shaving, physical therapy exercises, and taking his pills from Mom with a smile. There's a big box next to the item for him to check off, and there is one list per day. I printed off a week's worth, so hopefully some sort of routine can be established before I leave for Portland next Tuesday.

I can almost guarantee there will be family fighting on Friday during the Nebraska game. Dad got a wonderful homemade fleece blanket from his sister, Cathy, today and it is unbelievably soft and warm. Fighting to be in possession of the blanket and under it during the game will definitely happen. Mark my words. Goodies from the gift basket from my co-workers at Intel (greatest team to work with EVER!) will be used as bait to try and get the person with the blanket to leave it alone just for a few seconds. That's all it will take. Possession is 90% of the law, right?

Not much change the past couple of days; he's definitely awake more, but still walking a bit hunched over, still struggling to find words sometimes, and definitely gets worn out after just the slightest bit of activity. He did take a nap today, and he said he felt bad about doing so but he really wanted to have one. I told him that's not so unusual, and that I would have LOVED to take a nap today had the time been in my favor. Alas, it was not with Thanksgiving prep, work, and an airport run to pick up Mike and Cindy!

For those that are anxious to talk to Dad on the phone, he is talking now and can handle the conversations pretty well. One thing that I'd like to request is keeping the talking about the last month, or even his treatments/health to a minimum. He's really focused on it right now, and we're not sure it's all good to be in a constant state of thinking/talking about what's just happened. A short conversation about it and how he's doing today mixed with talk of grandkids, retirement, the weather, as well as things going on in YOUR lives are especially important. If you need a topic, I'd be happy to provide several. Just send me a note. :)

I've seen some mis-information going out via email from Dad, so to clarify: the first scan done in late October was just a baseline scan, but it was "good" news in that no change to the tumor in a negative way was going on, and that we will follow up in three months (end of January) for another scan. That one will be a bit more telling, as the radiation will have had more of a chance to work, he would have been through one full 6 week dose of chemo, as well as four monthly maintenance doses of chemo (each done for five days, one week a month). Until then, it's focused on getting his strength back, keeping him engaged in day-to-day, and getting back to "normal." He starts his next dose of monthly chemo on Monday, December 1st.

Hope everyone has a very happy thanksgiving!!! The Dillon's will be eating off of normal dinner plates this year instead of china (the HORROR!) to save some time in the kitchen and reduce the work of hand-washing all the dishes, but 17 family members will be in the house Thursday and we'll all be very thankful that we could all be together for the holidays.

Happy Thanksgiving!

Weekend was a bit slower than anticipated

Well, the PT on Friday really kind of threw Dad for a loop.  We think he overdid it a tad on the treadmill, and it just took a bit out of him this entire weekend.  He is still definitely better, but wasn't exactly bouncing around, running errands as we thought he would be.  Saturday evening he spent some time with the grandkids, and wrapped up the evening by just reading a book to Sam. I think they both really enjoyed that quiet moment together.  He went to bed pretty early Saturday, but is looking good.  He was up for a few rounds of visitors on Sunday, with some of the neighbors stopping by for some hot tea and conversation.  

Instead of getting on the treadmill, I told Dad on Sunday that his PT would be running the vacuum as we prepare for Thanksgiving at the Dillon house.  He argued that he "just did that."  Of course, to him it felt like just a few days ago; in reality, it was almost seven weeks ago that he last was driving a vacuum.    He did well, but it wiped him out and resulted in a well-deserved nap.

Today (actually for a while now) he is having some nausea and rolling stomach, so he cancelled PT for the day and is taking it easy.  Ritalin is still helping him stay up and be more alert, and we're still figuring out what dose and when to give it to him to be most effective.

Overall still positive.  I did get a call on Friday from our doctor friend of the family out in California (he's the one that suggested stimulants to begin with).  He said that there were at least four other stimulants to try if for any reason Ritalin stopped being effective.  That's always nice to hear there is a back up!  I also picked up the book  "Awakenings" on his suggestion.  I guess there is a lot more in the book (surprise!) than what was shown in the movie, and that I likely would get quite a bit out of reading it now after the latest experience with Dad.  Amazon.com loves me this season.

PT gets the last laugh. . .Dad's going to bed

All of the day's activities are catching up, and Dad is WIPED out.  It's 7:00PM, and he's heading to bed for the night.  Tomorrow we're going to shift around the Ritalin prescription a bit to see if we can't keep him up a bit and balanced a bit more, but overall a great day!

Dad is starting to show off for the physical therapist

First of all, Dad was awake this morning at around 8:00AM, and was awake through about 2:45 with just a wee bit of a snooze in the chair while waiting for the PT to show.  That's a first in months.  He was on the computer this morning, starting to dig into some of the mail from the past month, and just following up on things that he would have done on a normal day-to-day basis.  I went to grab lunch, and when I left, he was on the computer.  Unbelievably great to see!

Physical therapy was here when I got back, and when they came upstairs, she was shaking her head at how well he was doing after being in bed for six weeks.  He was able to get through 10 minutes on the treadmill (2.0 mph/6% grade) and five mins on the stationary bike and wasn't really out of breath at all.  He's REALLY tired now (and is now sleeping), but did a really good job.  

The trend continues - even out to dinner tonight

If you see any of the Dillon family wearing shirts provided by the pharmaceutical company that makes Ritalin, there's a reason.  Dad continues to get better and more alert with each day.  Today he was up a good part of the day.  We had a two hour appointment with the neuropsychiatrist, and he was as fascinated by the case as we were, which helps!  He was also remarked that it's extremely rare to have his office full of family members (all of us were there) and not have to referee a shouting match.  :)

On the way home from the appointment, Dad remarked that he'd like to have dinner out with the entire family tonight; which can mean only one thing: Zio's Pizza.  We got home, he took about an hour nap while I got caught up on work a bit, and then went down to Zio's where we all really enjoyed dinner.  The kids were super excited to see Grandpa, and we even went over to the Huff's so that Grandpa could rock Sam to sleep tonight - something he hasn't done for a few months.

Rich remarked sitting on the couch tonight: "Roger, it's good to have you awake."  Amazing what you can take for granted when life is going on as normal.  Start to appreciate the little things, like going out to eat or just sitting on the couch together, quite a bit.  

As I write this, it's 9:30PM and Dad is still awake, although getting close to being ready to go to bed.  PT tomorrow, and Dad's anxious to start getting back to being active and getting some strength back.  Doctor today said that it could be in part due to his being in bed for six weeks that he's so tired; but could also potentially be the temporal lobe of his brain sending the wrong message that he's exhausted, when physically he's just getting started.  We will continue to adjust medications and get him physical therapy until he yells, "Uncle!"

Overall, though, in just five days, a HUGE difference!!!

A little better each day, even went on an errand today!

Well, things just keep getting a little bit better each day.  Today Uncle Steve came up to winterize the mowers, and Dad actually went to the auto parts store to get the oil and filters with him.  He kept up for about 20 minutes  after getting back from the store, watching Steve working in the garage, even telling him how to change the oil in the riding mower at one point, and then he was completely worn out.  Being in the sunshine and outside, even for a short amount of time, took a lot out of him.  He took a hard nap all afternoon, and was a bit strained tonight, but overall doing really well.  He even spent some time on the phone tonight with Grandma and Uncle Mike, as well as wondering out loud why doing "nothing" all day makes him so tired.  I don't think he quite grasps that he's been in bed for about six weeks, with very little activity, and that it's going to take some time to build him back up.

Appetite seems to be in full swing, and is going through peanut M&M's just like old times (the bowl was empty tonight, which may explain why he wasn't too hungry for dinner).  Definitely can see progress, but quite a ways to go to build up his strength and cognition.

Tomorrow we go see the neuropsychiatrist at Creighton.  Not expecting to learn a whole lot tomorrow, but hoping he can help shed more light on what's going on, what else we can do, and provide a bit more of an assessment/evaluation of where Dad is, and how to get him back to where he was a couple months ago.

We did hear back from Mayo's, and right now I think we'll try to see how far he recovers on the stimulants (ritalin) before taking him up there.  The neurologist at Mayo's indicated he'd be happy to see Dad again anytime that we wanted to come up to Rochester, MN, if we felt that the doctors in Omaha weren't able to help further.  While we definitely felt that last week, I'm not sure it's as urgent that we get him to Minnesota right now.  One day at a time.

Physical Therapy resulted in a long nap; but still better today

Dad continued to show signs of being a bit better today, although still very foggy.  For the first day in weeks, he knew the year, month, and a pretty good guess on the date.  Physical therapy was out this afternoon (after the home health nurse this AM) and just some simple exercises really exhausted him.  He was able to do all of the movements, however, and following commands without questioning, so that's all good.

He's now taking a well-deserved nap after the activity this afternoon.  Next PT is Friday, but we're going to have him doing the exercises through the week to continue to build him up and get him back into the activity levels that he likes to have.

To hear his voice this afternoon, you would have thought he was completely better; while he's not quite there (not by a long shot), he's definitely a 1000% better than when I landed last week.  Maybe by next week at this time he will start asking to use the phone more.  Just a word of warning - he's still not making complete sense and is confused on a lot of what's happened, but I know he's starting to feel more social, which is good for all of us!

Thursday is the trip to see the neuropsychiatrist for further/deeper evaluation on his cognitive status.  Other than that, he's been a bit cold in the house, so the heat has been above 70 degrees for the first time in my lifetime.  Growing up, anything above 65 got a stern frown and a suggestion to get a sweater. :)

An "awakening" of sorts

We've had an "awakenings" of sorts in the past 18 hours, likely due to the addition of Ritalin and further reduction in his steroid intake.  Much more awake (only sleeping 19+ hrs instead of 24hrs/day).  However, he's still pretty confused -- it's like he's had a stroke the way he's trying to find the words to speak or questions he wants to ask.  Better, however, than 24hrs ago.  We'll take it.  Yesterday afternoon we didn't know what to think, so to have a turnaround this quickly was not expected. 

We need to get through this week (where we'll likely see the peak in improvement with the new medication per his internal medicine doctor this AM), and get him to start drinking fluids all the time.  Apparently damage to the hypothalamus and that part of the brain can impact his body's signal to drink more.  Dehydration is settling in, so some aggressive family prodding to drink is now in play at the Dillon house to get his blood pressure back up and heart rate down.  He has physical therapy coming out to start on his return to strength program. 

Also got him a quick haircut at the local walk-in salon on the way home from the doctor's office (I'm so thankful that I didn't have to follow up on my threat of using the clippers here at home; that could have been disastrous), so he's looking better today.  He's also not fighting us so much on eating.  He even picked up the Sunday paper as I was cleaning up the lunch dishes just now. . .not that he really read anything, but the desire to do something other than hold his head and go back to bed is an incredibly welcome sign.  Of course he's on his way for a nap now, but a positive past couple of hours.

Still waiting on feedback from Mayo's via the docs in Omaha, but I think if he's doing better on the Ritalin we're going to wait to head up to Minnesota for a few weeks. That trip would be really hard on him right now if we don't absolutely need to go.  I'm going to try and talk to our neurologist up there yet this week, however.  It's starting to look more and more like radiation damage causing all of this, and so we have some questions on how to determine if it's temporary or permanent.

A bit more awake, but still very confused

While Dad seems a bit more awake today, he's really having problems getting across what he wants to tell us.  He's having a hard time with some word association and asking questions in some areas; but then can sound as lucid as can be when he's saying goodnight to the grandkids.  If a stroke hadn't been ruled out already with MRI's, that's what I'd be asking to be investigated next.  A lot of repeat questions (like he didn't understand or hear the first time you answered him).

We had home health out for an evaluation today.  Pretty low blood pressure (90/62), so we're going to monitor that through tomorrow before we go in for an appointment on Monday.  We also got referred to a speech therapist and physical therapist today, all of which will be descending upon the house early next week.

Four doses of Ritalin are done, without too much impact other than a bit more awake.  He's still ready to go to bed almost immediately after coming out to eat, but he IS coming out to the kitchen to eat.  We likely will increase the dosage slowly over the next few days to see if that is going to help him.

Tomorrow if it gets above freezing I'm going to learn how to run the mower for one last cut before the official start of winter.  Pond has a layer of ice on it today, so it's definitely cold out here in Nebraska.  

Ritalin: Not just for ADHD kids anymore

We saw the psychiatrist this morning.  She thinks there is radiation damage (perhaps) to the Raphe nucleus, which interacts with almost every pertinent portion of the brain (per wikipedia).  With the tumor location near the Hippocampus (which is right next to the Raphe nucleus), it shows that it can impact mood, memory processing, sleep and cognition.

She's prescribed ritalin to act as a stimulant, and we should see some improvement in the next few days if that's what is going on.  He was up almost three hours today with the appoinment and getting around to go, so he was exhausted this afternoon.  Tonight at dinner he was more "alert" but REALLY confused and having a hard time getting across what he was trying to ask.  

We finally heard from Mayo's as well - more on Monday as he was going to talk to the radiation oncologist this afternoon.  The doctor had been traveling and not getting his messages (or something along those lines).

It's 7:15 and Dad is more than ready for bed.  He had a good dinner, though, and cracked a huge smile when I told him it was his turn to do the dishes.  I told him if he was going to be in shape by Thanksgiving, he needed to start tonight with training.  :)

Dad seemed better tonight

We don't know why, but Dad had a pretty good night tonight.  He came out for dinner.  Ate quite a bit (including a two-course dessert of cookies, ice cream x 2, grapes and strawberries).  And even stayed up while the grandkids came out.  He was up a total of about an hour, but was with it enough to talk to the kids and enjoy the private concert by his Grandson Dillon.  We sounded the alarm when he seemed better, so Tracy and Rich and the kids were able to interact with him on a "good" night.

He even half-laughed tonight after making  a joke about not wanting to talk to Uncle Mike; which was monumental.  I haven't seen him crack a smile in a week.  MUCH needed boost for us all, although no one knows why he seemed better tonight.  He even showered and shaved today, so he looks better as well.

Tomorrow we see the psychiatrist - hoping that there are some medical reasons for his lack of energy/motivation.  Will post another one tomorrow once we know more (hopefully we will know more).  We're still waiting on news from Mayo's -- frustrating to say the least, but we're ready to go at a moment's notice.

We don't know yet what tomorrow will bring, but tonight he did seem a little bit better.  

In the mean time, we're using the debit card to makeover the office: new chair, new photos (to replace the ones from 2002), and some organization.  Let's just say that the recycling bin is full for tomorrow with all of the catalogs from the past few years.

Hurry up and wait

Well, all of the records have been gathered and now we're just waiting on the next steps.  No update yet from Mayo's on possible windows of time we can get in up there.  I just talked with the appointment desk and of course just trying to make an appointment on our own puts us into December, so we sent another message to have the doctors coordinate with the Omaha medical crew and hope that we can get up there sooner than that.

Dad seems to be eating a bit better today, and actually sat in the living room to have a big breakfast (breaking every law in the house of eating anywhere but the kitchen).  He even wanted to call a friend of his to check in, which is a first in weeks.  Didn't last long, and he's back in bed, but a bit better than yesterday for a few minutes at a time.  We'll take it.

At this point, our next appointment is Friday with the psychiatrist unless we can get in somewhere earlier.  We're ready to leave for Mayo's at any time, but not sure yet when that will be.  In the mean time, we're getting an evaluation for physical therapy/nutrition and overall assessment soon.

I'll continue to update as I know more.

Gathering records

The process has started to gather records, scans, and get appointments set up for Dad to get to the Mayo Clinic.  Dr. Hsu is coordinating a plan before we leave, and will let us know timing and where to go upon landing or arriving in Rochester.  Date we leave is yet to be determined.

We also don't have the appointment with a psychiatrist until Friday (if we're in Omaha that long), so we're trying a few other avenues to try and get in somewhere else before we leave.  Got a good tip with the help from San Francisco to try Creighton, so Tracy is on the phone now trying to get us in there.

Home health care has been referred to come out for a nutritional evaluation, likely tomorrow.  Things are moving pretty quickly now.  Will keep you updated as we learn more.

Omaha is nearly out of ideas

Two of the doctors actually said today that they are out of ideas on what to try next.  Not exactly what we wanted to hear.  We are now in the process of evaluating whether to go to Mayo's up in Minnesota or MD Anderson in Houston.  

We did have a glimmer of good news last night when I was talking with John (who happens to be the brother-in-law of one of the premier neuropsychiatrists in the country).  He indicated that we should be evaluating Dad for low dopamine/stimulant levels and a full cognitive assessment to determine if the radiation damaged the brain sooner or more than previously thought.  This would cause very low energy levels, no motivation, tremors/shakes, and confusion.  We have an appointment tomorrow with a psychiatrist locally to get part of that evaluation done.

In the meantime, we're taking shifts playing the "mean" caregiver and forcing fluids and nutrition.  I scared Dad straight a bit tonight with the news that if he didn't start eating/drinking on his own, a home health care nurse would do it for him via an NG tube.  He told Mom upon going back to bed that tomorrow he was going to "hit it hard; walk more, drink and eat more, too."

He's pretty confused, and has no concept of time.  I asked him tonight what year it was, and he said, "Eighty-something?  I don't know."  Just before this though, he looked much improved for a few minutes and actually ran the electric shaver himself with me holding the mirror.  Glimmers of progress, but then it's short-lived.

I'm talking with the social worker tomorrow at the cancer center on next steps of getting to another location (Mayo's/MD Anderson) for more options on finding out what's going on.  If he can fly, we may see if we can get a flight arranged to get him there.

I'll keep you updated when I can. It's been pretty busy talking to the ensemble of doctors and health care workers (and a stint in the ER yesterday where all tests were normal!), but we're determined to find out what's going on.

Tracy brought Sam out tonight for a little visit/boost.  Sam was really happy to see Grandpa, and kept going back to the bedroom to "show Grandpa this shell with the ocean in it."  It did offer a boost for us all, I think.

Maybe a little better. . .?

The results of the MRI scan this week showed slight improvement over the one on 10/21/08.  The radiologist said that the contrast enhancement was slightly less conspicuous on both the right and left side.  There was no growth at all, no edema/bleeding, no sign of stroke, no new lesions. . .All great news.

What remains to be seen is what is causing this setback.  Possibly the steroids (they've since ramped back up on them, but it doesn't seem to be helping so it's time to wean him back off); possibly dehydration as well, as the headaches are worse with positional changes (upright or sitting makes them increase).

Talked to Mom tonight when I landed back in Portland, and she said he actually ate a meal in the kitchen tonight.  He went right back to bed afterwards, but this is progress.  I land in Omaha tomorrow night and will be staying for the month to help out.

We're still trying to find out what's going on. . .

We don't have better news today on Dad's progress.  If anything, he may be a little worse.  The doctors are feverishly working together to find out what's going on.  Dr. Silverberg and Dr. Hsu are pulling their weight to get an MRI sooner than Thursday; and depending on what the scan shows, we may try to go back up to Mayo's if Dad can tolerate the trip.  Mom said tonight via email that they may admit Dad again into the hospital as he's really not better, and getting weaker (he's not eating as well now, either).

We really don't know what's going on, and everyone is anxious to find out.  I'm flying back to Omaha Saturday and will be in town through November to help out Mom at the house and lend my support in getting Dad over this hump.  

Wish it was better news.  Keep the positive thoughts and prayers heading to Elkhorn; and I'll keep you posted on what we find out from the scan.

A few setbacks today

I'm relaying information from 19 time zones away, so I have limited information.  

Dad is getting a lot more confused and is really having a hard time even figuring out how to recline the seat in the car on the way to the doctor's office.  This morning he appeared to have a seizure, but after seeing the neurologist, they think it may just be the hot shower with some low blood pressure that caused a seizure-like few moments for him.  

The doctors are stumped right now on what's going on.  A few new symptoms have come to light, so they are doing a repeat MRI scan later this week (we're trying for sooner than Friday) and an EEG mid-week to determine if there has been any change to the tumor.  

I'm working on getting Dad back to Mayo's Clinic in Rochester next week if at all possible since we're not figuring this out, but Mom wants to wait for the MRI results to come in before making the trip up there.

I'll be heading home this weekend from Portland (after traveling in from New Zealand) and going to stick around there for a while.  Keep the positive thoughts flowing.  Dad isn't really checking email or on the phone right now, but I'm checking mail and I'll be keeping the blog up to date when I can.

Home from the hospital; still really tired

Well - the extreme fatigue finally landed Dad in the hospital for a few days while they tried to figure out what was the cause.  Dad got home this morning, but still is very tired.  He had critically low cortisol levels (which can contribute to the fatigue), and is doing a bit better but still a bit foggy and exhausted.  He's on a higher dose of steroids now, but will have to come back off them very slowly at some point in the near future.

I did talk with him via Skype (I'm in New Zealand at the moment) and he sounded pretty good.  He's not sleeping AS much, but we're still not to the bottom of what's going on.

The Huff's are coming out this weekend to do the winterizing of the yard/pond.  Dad just isn't up for much activity at all.  Hopefully that all changes soon!  

First Post Treatment Scan Results Are In!

Sorry for the lack of updates, all.  If the trans-Atlantic flights would turn back on the WiFi hotspots on the planes (Lufthansa had them up until about 18 months ago), I would have been better about getting you the latest news.

Dad had his first post-treatment MRI scan Tuesday, and the results were discussed today in the radiation oncology office.  The best that we could hope for (which is no change to the tumor and no new symptoms) is exactly what we got.  A great report from the doctor today telling us that the MRI showed no new growth and only some minor swelling around the tumor.  The entire medical team (including Mayo's and the medical oncologist) were in agreement that this was good progress, and that the next scan will be in three months.  Labs are all pretty normal, and we find out more tomorrow on next course of treatment for chemo (which is likely five days a month for the next 12 months).

Coming off the steroids has taken a big toll on Dad's ability to stay awake.  He's been pretty much in bed sound asleep 21+ hours a day, with a few breaks in between to get a small bite to eat and get cleaned up.  Hard to see him so tired, but we think that the treatment is finally catching up to him and mixed with the steroid reduction, it's really zapping his energy.

Goal is to get him out of this severe fatigue phase and back to doing some exercise soon.  More labs were drawn today to make sure it wasn't his thyroid acting up, and we met with a dietician to find out ways we can get more calories/protein in his diet when he's just not hungry at all.  

Thanks for all of the emails and phone calls, and sorry for the delays in posting.  I'll be out again the next few weeks, but will try to get an update posted when we know more about next steps for treatment.

Roger's youngest daughter is not good at updates this month

Sorry all for the lack of updates.  Wrapping up a busy quarter for work (and planning for a trip to Eastern Europe and India) seems to take up a bit of time. :)

Dad is doing well.  Treatments are done, he was off steroids for nearly a week (back on them yesterday after some side effects caused by some increased swelling), but overall doing well.  He goes in for his first of many MRI scans October 21st, which will give us the baseline for all future MRI's.  Dr. Hsu tells us that the radiation will continue to work for up to two years, so MRI scans will likely be done every three months during that time to measure progress.

He will also find out in October about his ability to get back his driver's license.  He's anxious to get some independence back as I'm sure you can imagine.

I'm out for close to three weeks, but will be back in Omaha for the scan the last week in October.  In the mean time, keep up your emails and phone calls, and Dad doesn't seem to ever turn down the opportunity for a breakfast or lunch date.  

Mary  

And then there were none. . .

The radiation and chemo are DONE!  Dan finished up radiation treatment #33 today, and there was much celebration and fanfare at a nice, late evening Fleming's dinner (you gotta try the Lava Cake - save room for the decadence).  Dad will return in a few weeks for a follow-up appointment with his radiation oncologist, but otherwise, things start to ramp up again in about a month.

• Mid-October: First MRI scan post radiation and five days of "double-duty" chemo; and an evaluation on if driving privileges are going to be returned (Maybe!)
  
• Late-October: Likely a follow up appointment/MRI at Mayo's with our Neuro team
  
• November - June: five-day chemo treatments per month, plenty of follow up appointments
  

This last week saw a few more side effects, but we are incredibly thankful that they never reached the point of being severe.  When Dad gets his license back to drive, it's going to be like a 16 year old with a new license.  He's going to be running to the store, Walgreen's, over to see the grandkids, or just drive around quite a bit.  

Dad and I are going to head to the Husker game on Saturday evening in Lincoln.  If you find yourselves in the West stadium, give us a wave.

The Final Three - this week!

Apologies for the lack of entries.  It's been a pretty busy week for me, and I didn't have a chance to update the blog.  Lame excuse, I know.  :)

I'm back in Omaha, and Dad has three treatments left!  Hard to believe that he's knocked down 30 so far, and has until Thursday and he's done!  After Thursday, we have a month-long wait for the next MRI scan, and then the next round of chemo.  Might be a trip to Mayo's as well in there for good measure.

Thursday night we'll be having a family dinner at a local steakhouse to celebrate the end of treatments.  Dr. Silverberg gave the okay for a half glass of wine as we toast to a full recovery.  Overall, Dad's done really well and hasn't really suffered many of the side effects we were expecting.  He still feels pretty darn well, but is seeing some tiredness and nausea kick in the last week.  Good thing it's almost over!

Nine treatments left!

Just a short note to say nine treatments left, and Dad has discovered that shutting his eyes during treatment results in a fireworks show on the backs of his eyelids.

Still feeling good, and even starting to ride his bike a little in the neighborhood.  He's claimed that he will master the hills of Indian Creek (their development) in the next couple weeks.

Have a great holiday weekend!

Feeling good - 4 weeks down, 2 1/2 to go

The weekend was spent with convertible rides, Ted & Wally's Ice Cream in the Old Market, family pictures, and lots of time spent with the grandkids.  The kids were really happy to spend time with Grandpa and Grandma (and Auntie).

Thirteen treatments remain.  Morning walks, mowing the lawn (with the riding lawn mower), and a positive attitude are making the time fly!

A picture in Tracy and Rich's kitchen before the family pictures extravaganza at Boys Town. . .when all of the kids still felt like smiling at the same time.  :)

Over 50% done with radiation, 15 treatments remain

Yesterday was treatment 17, which means that Dad was more than half-way done with radiation treatments.  His final day of radiation is September 10th, and you better believe there will be a celebration that night!

Dad continues to feel pretty well.  He's tapering down on the steroids (which is a great sign, actually, that he can tolerate fewer steroids in his system), has a great appetite (best sweet corn EVER right now from the back of a farmer's truck in Elkhorn), and the doctors are all making comments that he looks really good.  Dull headaches and some fatigue are a part of his day right now, but he's trying to combat it with a daily walk around the neighborhood in the mornings, and staying as active as possible during the day.

So far, the weather in Omaha has cooperated for us to take the convertible beetle to every appointment and treatment.  We're both showing some evidence of sunshine on our noses and cheeks.  

And we got Dad to a movie yesterday: "Wall-E" with grandkids Emily and Dillon.  Since it was Emily's first movie, it proved to be more entertaining than planned.  Two tubs of popcorn, a box of Junior Mints, and a booster seat were all part of the evening.  At one point, Emily leaned over to Dad and asked, "Grandpa, why are your eyes closed?"  Let's just say that Tracy came to pick up her daughter about an hour in to the show while the rest of us stayed back to watch the rest of the movie.

Nearing end of week three. . .

Friday marks the end of week three of treatment.  Side effects (headaches, foggy, tired) start to hit towards the end of the week, but Dad is still feeling pretty darn well.  

The cookies from Eileen's went over very well yesterday at Dr. Hsu's office.  Sometimes a little treat to show how much he appreciates the great care and help they're giving him (and the entire family) is needed.

This weekend I (Mary) head home to Omaha for about eight days to see where I can help out, and just hang with the family.   First thing on tap: updating Dad's iPhone to the 2.0 software.   

Mark "pull weeds around the pond" off the list

Just got off the phone with Dad.  He was out pulling weeds around the pond.  I guess you can say he's feeling pretty well.

Today marked the 1/3rd complete milestone of radiation/chemo treatments.  He has 22 more to go, which puts his final day of radiation at September 10th.  The staff and doctors are all amazed at how well Dad is feeling.  Week three could get a bit tougher as the radiation treatments start to have a cumulative effect (radiation is given in fractions, and they all add up to one dose -- with the half life of radiation being. . .well, something bigger than six weeks. . .he's going to probably feel the effects starting this week or next).  Hopefully not!

He's taking short walks around the neighborhood a few times a day -- and he's trying to build up some stamina and walk longer each time to keep himself physically active.   He said he skipped a nap today that likely would impact his ability to stay up for watching the Olympics tonight, but otherwise he felt great (all things considered).

End of Week Two . . .and a Sleepover!

Grandson #1, Dillon (who starts first grade next week), is now sleeping soundly at Mom and Dad's house after a full evening of having Grandpa and Grandma to himself.  There were models built using K'Nex, plenty of talk of Transformers (a favorite now for a year), and likely a game of Monopoly.  When he found out I had a few boxes in the garage of Star Wars toys, it suddenly became VERY important to visit Portland, Oregon.

Auntie Mary wasn't too happy to find out he had never seen the original Looney Toons with Bugs Bunny, Yosemite Sam, and Marvin the Martian.  Trust me, that will change.   And soon.  I may be shopping at CostCo tomorrow and bringing a "Back to School" present when I visit next weekend.

Dad had a good end to the week.  The onset of a headache yesterday was responding well to a tylenol and some ice, and he felt good enough to have a 6 year-old spend the night.  So that has to tell you something!  Today marked the end of week two of radiation.  Dad continues to have a positive attitude, which is fantastic!  Keep it up!

Off to watch the spectacular Olympic Opening Ceremonies from Beijing.

Things are looking up!

After eight treatments of radiation (and daily chemotherapy), things are looking pretty good right now. Dad feels good, is not suffering major side effects since the steroids picked a fight with the headaches Saturday, and so far, the anti-nausea medication is working its magic on the chemo pills.

Rumor has it Dad was out mowing the lawn the other day (riding mower!), has been gaining a few pounds back with the help of generous helpings of dinner and dessert, and has been walking around the block to get some exercise. There's even talk of attending a Husker game in mid-September.

Apparently the woman at the Cancer Society confused him for a friend of a cancer patient, not a cancer patient, due to his overall look of health/well being. 

A fun fact: over 98 of you are following the blog, and roughly 20 people a day check in. We've hit most of the US, and even Romania! Thanks for checking in!

Preparing for Treatment: Week Two

Kind of a rough end to the first week of treatment.  Headaches that were barely touched by the turban of ice throughout the day kept Dad a bit down this week.  Steroids were prescribed and started Friday, and thankfully they seem to be helping quite a bit.  While unusual to have this much of a side effect in the first week, it's not unheard of for patients to experience the swelling during the first week.

Not sure if it's the swelling or another factor, but mini-seizures were back on Thursday.  He's still really tired from being in the hospital, as well as from the treatments.  Maintaining calorie intake is key (per the dietician working with Dad - high calorie, high protein diet is a must), so treats like full-fledged hot fudge sundae is no longer challenged in the house.  :)

However, there is good news.  One week of treatment is DONE.  He's having extremely high tolerance to the chemo (thanks to the zofran to knock out any nausea), and is getting quite a bit of rest.  The staff at Legacy West Cancer Center in Omaha has also been phenomenal.  After just a few weeks, it feels as if they're an extension of the family.  VERY nice to be able to work with that kind of environment.

All of the phone calls, cards, emails and stopping by is really helping!  Thanks!

Treatment: Day Two

Well, the first day of radiation, followed by chemo, is over.

Dad was fighting a bug of some kind (or some reaction to the coumadin) that pretty much had him feeling bad since he got out of the hospital last night. Not exactly the way he wanted to start out treatment, but he started on time and made it through.

The email from him this AM (and confirmation with Mom while Dad took a nap) indicated that he actually felt quite a bit better than yesterday. He's still really tired, but feels better than the past several days. Let's hope that lasts!

32 more radiation treatments to go, with daily chemo tablets the entire time. I need to get him a calendar to mark off the days completed.

HOME!

After a quick (sanctioned) escape this AM to get a CT scan across the street, Dad is officially home in Elkhorn.    He gets pretty tired quickly after being in bed for nearly five days, but he's home.

Treatment officially starts Monday afternoon.  The "mask" has been molded that will hold the head still during treatment.  Interpreting what Dad said to me earlier today, that experience ranked second only to having the frame attached for his biopsy a few weeks ago.  Neither were pleasant.

Chemo/Radiation in combo for the next 6 1/2 weeks.  We're all hoping for minimal side effects on both.  The blog should take a bit of a breather until treatment kicks in, so don't panic if you don't hear from us.  :)

Mary

Off Bed Rest, Home Tomorrow

The doctors have given in to Dad's demands (after the bloodwork came back with levels where they wanted), and he's up out of bed and getting ready to start walking the halls. Apparently there is the reward of free ice cream down near the nurse's lounge, so he's a man on a mission to get both his strength back and a little treat.

Assuming all goes well today, he'll be home at some point tomorrow. He's been cleared to go SLOWLY on the treadmill and riding the mower later in the week. He is definitely anxious to get out of the hospital. Although apparently watching little Sam saying "Hi" to EVERYONE in the hallway when he was up for a short visit was quite entertaining for all involved.

Radiation/Chemo will likely start next Monday (July 28th). He'll continue on with the planning part of treatment the rest of this week.

Thanks for all of the calls, emails, comments, and visits!

Day Three of Complete Bed Rest

Yesterday Dad was thinking that just because he saw the sun rise twice, that his 48hr prescription for complete bed rest while the blood thinners worked their magic was over.  Not quite.  He just finished his two day stint and on his third.

His hopes of getting to the "Chair Rest" stage this morning were dashed by a too low coumadin level.  Tomorrow he's told.

Grandkids Emily and Dillon made an appearance earlier today, which brightened things up a bit and relinquished some of the boredom.  He was also greeted with two John Grisham paperbacks, and I believe his laptop.  

He's doing really well - just waiting for the medicine to work.  His request to mow the lawn with the walk-behind mower and a sturdy walk on the treadmill were declined today by the doctor.  One day at a time until they get his circulatory system acting normally again.

That's all for now. . .

The Most Common Inquiry: What Can I Do?

I'm getting quite a few inquiries into what you can do for Mom and Dad.  First of all, thank you!

  

At this point, I've been convinced, there really isn't much.  Maybe as treatment starts kicking in and the need to reach out a bit more comes into play, we'll let you know.  Things that I know help:

1. Emails or phone calls: if you need an email address, please ask.  Calling the house is probably the best location
   
2. Stopping by (please call first): Dad loves visitors, and it helps break up his day.  However, we never know what kind of day he's going to have, so please call first and when the warden (usually Mary when in town) comes out to the porch and says its time to wrap it up, please don't get mad.  He gets tired pretty easily, but really does like seeing a fresh face.
   
3. Good book to read: with five days in the hospital coming up, and quite a bit of down time at the house during treatment, he's going to need an escape.  "Oprah" and "Bold and the Beautiful" only take up 90 minutes (even less on TiVo).  :)

As time goes on, I will let those of you that have asked more specifically what they can do as the needs arise.

Again - thank you all for your communications, thoughts, prayers, and genuine caring for Dad!

Mary

Little Hiccup on the way to Treatment. . .

Okay, probably not so little.

If anyone knows the direct number to "The Universe," can you please pass it along?  Dad found himself in the Lakeside Hospital ER late last night for confirmed blood clots in his lung (fancy term is pulmonary embolism); and this morning they found the culprit in his lower left leg as well.  We'd all like to send a message to The Universe that we've had enough, thank you.  Dad and Mom (and Tracy) pretty much are wrapping up on their West Omaha Urgent Care and ER tour, finally settling in on Lakeside as the best.  No more research is needed, thank you.  :)

He's going to be spending five full days (at least) in the hospital while they get rid of the clots. The nurse likely broke quite a few rules today when she allowed him to shave with a fresh razor after all the heparin and blood thinners they are pumping into him.  Thankfully he had a steady hand.  The oncologists have stopped by (which is a bit unusual, at least based on what we're used to), and Dr. Silverberg even brought Dad two packages of cookies: one from Dr. Hsu (radiation oncologist) and a package of Fig Newton's from himself.  

The other part of the primary team in Minnesota (Drs. Lachance and Lee) have been consulted and all agree on the plan of action.  Next week Dad will get the "mapping" CT for the final step in treatment planning; and while a setback, this five days in the hospital will only push treatment by a few days.

More updates as I get them from Omaha. . .

Diagnosis In, Treatment Begins Monday

It has been quite a whirlwind of activity, but since May 13th, we've found out the following:

• The Mayo Clinic is probably the best medical facility in all the land.  Can't say enough about the level of care, doctors, and facilities.  Unbelievable.
• The numerous MRIs and CT Scans, stereotactic biopsy and multiple doctor appointments has revealed a Grade 3 anaplastic astrocytoma in the right (and likely the left) temporal lobe.  
• Recommended treatment is six and a half weeks of radiation (to be done in Omaha) alongside pill-form chemotherapy.  Chemo will continue monthly (five days each month) for six months to a year.  Scans will be taken at regular intervals to monitor progress and the state of Dad's remission.
• Doctors are very encouraging and positive on how well Dad will tolerate treatment due to his overall great health, relatively young in age, lack of symptoms (perhaps indicating we caught it early) and great attitude/support system.

Thanks for all of your ongoing support, checking in, mowing the lawn, getting the mail/papers, and for stopping by!  I'll keep this updated as I can from Portland, and when I travel back to Omaha regularly this summer/fall.  

Feel free to add comments to the posts, or just overall messages of support!

Mary