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February 20, 2009
Long time.....no post. Nevertheless, I'll keep it short and sweet. Just got the results of Roger's MRI from last week. No changes. Nada. It's almost surreal looking at the scans. As in, "are these really scans for the same person???" Nothing has moved or grown. Roger's neuro-oncologists really couldn't explain other than to comment that he's responded extremely well and that we are fortunate that the combination of surgery, radiation and chemotherapy is doing exactly what it's supposed to.
Other than that, the only concern has been keeping Roger warm. Even though the house is usually around 70 degrees right (and the boys run around in shorts), he's always cold. Layers? check. Electric blanket? check. Wool sweaters? check. His doctor said that she thinks his hypothalamus has been affected through all this and that's a big center for body temp regulation. Thus perhaps his inability to maintain his temp. Oh yes and being on blood thinners for the past 2 years can contribute as well. So he's holding out for some warmer temps in March to do some spring skiing with the boys and me!
Peace, Love & sending Colorado sunshine to everyone,
Heather
October 2, 2008
There has never been, nor will there ever be, a life free from problems. It is not the presence of problems but how we tackle them that determines the quality of our lives.
-Eastern wisdom
Today was MRI day at our house. Always one that causes me to second-guess any slight change in Roger's mood and actions. Other than the bizarre blip at the end of August when Rog had the 2 grand mal seizures in the same day, I truly couldn't come up with anything that would signal a change in his status. But, it's almost as if my mind has programmed itself to lower the expectations so that no matter what we find out, our expectations will be exceeded. We are grateful that our expectations were exceeded yet again...His scans showed no growth. After having breakthrough growth on the Temodar (after 6 cycles), and then opting out of CCNU after 4 cycles when he developed severe intestinal issues, I am over the moon that he's here, enjoying life with our boys. Thanks to the Tarceva that is currently the only active anti-tumor therapy, and the other 7 meds that treat the symptoms....it appears we still have the best medicinal cocktail going for Rog.
And the best therapy for the boys continues to be lots of activity! Keeping their minds occupied, their schedules busy with soccer and karate, and their bellies full. ha. For me? getting back into regular yoga practice, walking Lucy every day, volunteering at school, and finding ways to focus on the positives in our lives. A few weeks ago I was a presenter to a group of oncology nurses and social workers who were receiving training on how to run a support group for kids who have a parent with cancer. The foundation that developed the program is based here in Denver and is called The Children's Treehouse Foundation. Hayden and Brady went through their 6 week support group program back in 2006 after Roger was first diagnosed with GBM. I've stayed in touch with the founder and he asked me to present at their training. It's obviously an emotional roller coaster telling our family's story about cancer, but afterwards I get this surge of positive energy. Although I'm still so angry about what this disease has taken away from our family, I truly believe in this organization and how important it is to get more medical centers "equipped" with the program so more kids can be given the support and tools they need to cope.
At any rate, my news to share is that I participated in a radio/internet show interview with The Wellness Center that also highlighted this national program. The Wellness Center does a weekly show called Frankly Speaking About Cancer. The episode we taped was all about "How to talk to Kids about Cancer". It will air on October 7th at 4pm EDT and you can access the program by going to Voice America You can also download and listen to any of their previously aired shows (including this new one once it airs) whenever you want.
I do want to acknowledge that Roger's journey during the most recent 12 months has been anything but typical with this disease. I wish we could replicate what has worked for him and transfer it to other GBM warriors. It's rather uncommon to be able to keep GBM tumors at bay this long. I have been at a loss during the past couple of months wondering how Roger has been able to keep battling, while others have not (despite what modern medicine can throw at the tumors). Please say a prayer for my "caregivers-in-arms" whose spouses have recently passed away: Sally and her three boys, and Frances and her three girls. I consider myself a very lucky individual to have become friends with each of these amazing women --- originally connected by the unfortunate diagnoses that our husbands shared, but now friends (I hope), for a long time no matter what. I am scared and saddened by the passing of their husbands and reminded that life must truly be treasured each and every day to the fullest.
Peace and Love,
Heather
August 28, 2008
Double Whammy
So much for our track record. After a year without seizures, Roger suffered 2 grand mals yesterday. Thankfully both occurred here at home. On the unfortunate side, the second one started while I was downstairs checking on the boys and when I came back into the kitchen, he had gone into convulsions and fallen from the chair onto the hardwood floor. He really nailed his head and had bitten one side of his lip, so not only was he confused and out of it, but he was bruised and bleeding. He's never had seizures this close together (within 6 hours of each other), and I had all sorts of worries running through my brain. My mom came to get the boys and Roger's mom came to ride with us to the ER.
After 5-1/2 hours in the ER, blood tests, CT scan, an IV boost of Dilantin (one of his anti-convulsants), and repeated begging from all 3 of us (I was tempted to pull Roger's IV out myself), Rog was finally discharged at 1 am this morning. All the tests they ran were pretty inconclusive. His Dilantin level in the blood was a tad under the therapeutic range, and they thought there might be a tiny spot on the CT scan, but otherwise----no clear answers. So for now, we just don't have any reasons. I've left messages for Roger's Neuro-Oncologist about the excitement from yesterday.....just keep your fingers crossed that he won't have any more seizures for now.
Oh yeah and our roof is being replaced this week so the banging started up at 6:45am today. No rest for the weary.
Until next time,
Heather
July 18, 2008
Of Mice and Men.....and MRIs
I trust everyone has come to realize that it's usually the pace of life and it's normalcy that keeps me from posting in a more timely fashion. The pace just seems to have tripled since the boys' summer vacation officially started and I think I'm the most exhausted out of all four of us these days.
First up, Roger's last MRI. Great news as it looked basically identical to the previous one in April. Nothing shrinking/nothing changing/nothing growing. Dr. Damek basically said let's "not rock the boat" at this point and just keep everything we are doing exactly the same. Pending any other issues, Roger isn't scheduled to have another MRI until the beginning of October. Hooray for stability!
The good news on the MRI was great to come home to. We had a 10 day family vacation with our friends from Grand Junction -- Jamie, Kristen, Ian and Asher -- at the end of June. We spent 4 days in Grand Teton National Park. Think cabins, hiking, swimming in crystal clear Jackson Lake (okay just the kids---the water was only 54 degrees), a float trip down the Snake River, grilling dinners by the Lake, watching a family of foxes every day and spotting a grizzly. We then moved on to Yellowstone for 4 more days of non-stop geysers, mudpots, hot springs, and fumaroles (if you go, you'll get to add that one to you personal vocab list!). Plus hordes of bison, amazing black bears, herds of elk and flocks (it certainly felt like it) of mosquitos. The boys absolutely loved it. Everything went pretty smoothly other than Rog getting lost in the hotel in Mammoth Hot Springs (it's a historic hotel complete with bathrooms and showers down the hall). Thankfully after a couple of laps around the first floor, he found our open door (I threatened to write our room number on his hand next time he headed to the facilities - ha ha). I've posted a couple of photos from our trip!
Since our return, I've felt like the losing contestant on "How Good Are You at Home Maintenance??" On the Fourth of July, I discovered that we had mice in our garage (a bag of birdseed had evidently given them no reason to ever want to leave). We emptied out the entire garage that day and promptly chased 4 mice into the bushes outside. In the days that followed, I quickly became adept at baiting and setting the good old fashioned traps with peanut butter and cheese and have hauled in 4 (very dead) mice. And my Dad rushed to the rescue with cement patching and steel wool to shut off any possible re-entry attempts. Cross your fingers....I think we've been successful with this first assault.
Then just this week, I discovered the true reason why our dry patch in the grass was growing larger every day. Hmmmm.....let's test the range of the sprinklers since I never see them actually come on at 1am. "...and lo and behold a minature lake appeared..." No wonder we had lawn issues. A huge thanks to our neighbor Craig for help with initial diagnostics and advice. A deafening round of applause to our friend Bill Jordan and his crew (brother-in-law and friend) for showing up and literally getting down and dirty and replacing the section of punctured pipe in record time.
You guys are all so very kind. I am lucky to have friends/neighbors/family who have been willing to help me out with all the "man jobs" that I took for granted when Roger did them all. I think I need to compile a list of "household things to do" for spring, summer, fall & winter and tack it up in my garage. Who knows what else could be looming out there if I don't attend to it?!?
Mice, men, MRIs. I think I've got the start of a new book...
Peace and Love,
Heather
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June 11, 2008
School's out for summer......finally! Our boys are officially off for the next 8 weeks and thrilled to be in the throes of track practice, staying outside until the sun sets at a leisurely 9pm, no more homework, etc. They both wrapped up spring soccer with tournament wins for their respective teams and plenty of celebrating and chaos. All good fun.
We recognized Roger's 2 year anniversary since diagnosis by walking in the Angel Adventure/National Brain Tumor Foundation 5K last Saturday at Sloan's Lake (well, almost everyone walked...Hayden and Sam Walmer ran it). For the rest of us, it was a great "conversational pace" and we thoroughly enjoyed catching up with all our marvelous family and friends who showed up to walk with Rog. Thank you to EVERYONE (40? 50?) who walked and/or donated! You all rock our world and keep us going. Here's to the best of summer.......lots of sunshine, hot days, cool beverages, and kicking back. We're expecting nothing but stability on Roger's next MRI on July 1st (the glass is half full, right?!?).
Until then,
Heather, Rog, Hayden & Brady
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May 16, 2008
TGIF! It's been a loooong week for me (Heather) as I've been on the couch, on crutches and unable to drive all week. Just a little arthroscopy on the knee but darn I don't remember being down for so long with the last scope! eeeek. Getting old. Thanks to everyone who has been chauffering the boys all week, bringing me ice daily, the meals, the coffee, the treats, all so very much appreciated
This coming Monday the 19th is the 2 year anniversary of Roger's GBM diagnosis. Considering that the doctors told us the average life expectancy was 9-12 months with this aggressive form of cancer, we are stoked that Roger has "improved the averages" for all GBM patients and is still living strong! We are walking in the annual Angel Adventure/Brain Tumor 5K Walk to benefit the National Brain Tumor Foundation and fund research for all brain tumors on Saturday, June 7th at Sloans Lake Park in Denver.
We'd love to have you walk with us in celebration. Join our team, "Roger's Road Warriors II" by registering at www.braintumor.org. If you have one of the "Roger's Road Warriors" t-shirts from 2 years ago, wear it! If not, no worries, just grab a white tee and I'll be handing out Hawaiian leis to all our team so we'll stand out and be stylin'.
Love & Cheers,
Heather, Roger, Hayden & Brady
April 3, 2008
Despite having an MRI scheduled on April Fool's Day (being superstitious I almost asked to have it changed), we are happy to report that Roger's scans on April 1st showed no new growth! His oncologist even commented that they are almost identical to the last round from January and that the Tarceva appears to be keeping any new growth/enhancement at bay. Tarceva isn't technically a chemotherapy agent, but is classified in the "anti-angiogensis" category of drugs that interfere with the cancer's cells ability to communicate. Roger has been on Tarceva--at various doses--for 18 months now (previously in combination with Temodar, and then CCNU when he had breakthrough growth with Temodar). Since October however, it's been solely Tarceva. No changes to the treatment protocol at this point, other than we were able to delete another med from Roger's stable of drugs. The fewer, the better.
I've been off-line for the past couple of months in the spirit of "no news is good news" and we are doing our best to stay focused on the good things in life. Which in our house, in the Colorado winter, means skiing. Thanks to everyone who skied with us this season (Aunt Jill & Uncle Jim in Steamboat; Roger's brother Troy, wife Dee Dee & our nephews Hunter & Grayson; soccer pals Sonja, Christian, Chris & Cooper; Hayden's buddy Drake & his mom Nancy; and Pete, Tracy, Connor, Joe & Ellie). I'm sad that it's already April and I'd love to squeeze in another day or two of spring skiing.....so I'm not taking the racks off the car just yet! Hmmmmm. Maybe a day at the beach at A-Basin anyone?!
In the entertainment arena, Roger and the boys have probably watched The Simpsons Movie 10-15 times since Hayden & Brady picked it out for their Dad for Christmas. Hayden and Roger laugh so hard they have tears in their eyes and all 3 can quote scenes in the movie verbatim. I just don't get it. Is it a guy-thing??? And you know what has me pondering? Roger can quote lines from that movie---meaning that somehow (perhaps the 10-15 repeat viewings) his short-term memory has kicked in. Alas. Maybe we just need our life to be more like Homer, Marge, Bart, Lisa & Maggie and then Rog could remember everything!
Brady is still enthralled with karate and is currently an orange belt. Spring soccer started last month and we get to juggle karate 2x week and soccer 2x week for him. Hayden has soccer 4x week and fencing 1x week. Yes....it requires multiple drop-offs and pick-ups and I am so thankful for all our friends out there who are helping out with rides to and from. It takes a village!
A huge welcome to our new nephew Camden James Wulforst who arrived last Friday March 28th. All four of us were on hand at the hospital when my sister's hubby Rich walked out of the surgery room with the perfect little guy. Erin and Cam came home from the hospital this week and they are all adjusting to life with an infant and a very industrious 2 year old (that would be Trey). aaahhhhh. I remember that shell-shocked feeling myself. But it's all good.
The numbers board:
| Total # of grandsons for Heather's Mom & Dad: |
4 |
| # of days each week at a soccer field: |
6 |
| Roger's meds count: |
7 |
| Lucy's weight (everyone keeps asking): |
90 lbs |
| Roger's ski days this year: |
6 |
| School days left until summer vacation: |
45 |
Save the date! We are making plans to participate again in the annual Angel Adventure Walk for the National Brain Tumor Foundation. Saturday, June 7th at Sloan's Lake Park in Denver. This year, we are going to join forces with another GBM warrior (John) and his family---the Brostrom's. His wife Frances and I became connected through a mutual friend and finally got the chance to meet in person yesterday for lunch. Watch out---we are in cahoots and working on a joint team name. Stay tuned and I will post again with the team name and more info on how to register and walk with us.
Peace and Love,
Heather
"Good timber does not grow with ease; the stronger the wind, the stronger the trees."
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Jan 17, 2008
Well I had an MRI yesterday and the results were good news: no new growth. The oncologist said to "continue as is" with the current medications (Heather says I'm down to 8) and to "keep doing what what we're doing". Which is at times funny (and at others depressing) to think about because sometimes I don't feel like I'm doing much of anything but crosswords. But I'll take it. So until I go back for another MRI in 10 weeks, I just want to stay busy and have fun. If you have any ideas or want to participate, give us a holler.
Thanks for staying in touch and helping us out,
Rog
p.s.
We want to acknowledge that the great photos of the family that have been added to the site (and on our holiday card) are the handiwork of our friend Laura Arneson. We've received many compliments and wanted to pass along kudos to the talented individual on the other side of the lens.
Jan 1, 2008
Happy 2008 to all!
Since my last post in mid-November, I just want to acknowledge the crew that pulled off the surprise tailgate birthday party for Roger the day after Thanksgiving. Despite the frigid temps in Boulder that day, the action on the field kept us all warm as CU had a fantastic win over Nebraska. Rog was in true Buff alum form and thoroughly enjoyed himself! Gracias to the Marcum's and the Doig's and to all the Leary's for making it all possible.
The holidays just wouldn't have been as merry if it wasn't for our friends and fam who helped out around here: Christmas kudos to the Schindlers for the shopping day for the boys and getting our tree up; to Roger P. for getting the outside lights hung; Jamie for taking the boys to the Avs game & the hotel sleep-over; Fuj & Steve for hanging here with the boys on several occasions; Dad for making sure all our bills are paid and our finances in the black; all the help with getting Hayden to soccer games and Brady to karate (the Graybill's and the Fixler's respectively); and to Troy & Dee Dee for helping us get the foos ball table assembled Christmas Eve -- just in the nick of time!
We don't have a scheduled day yet for Roger's MRI this month but are thinking positive thoughts as all outward signs seem stable. It truly is a battle of highs and lows and I am so grateful that we were on the "high" side of things for the holidays this year. To all my fellow GBM spouses out there, I just want to wish you peace in 2008, and more good times than bad. Although some of us have never met in person, our shared struggles make me yearn to give you all a huge hug on days when I read a post that conveys the extreme difficulties that this disease inflicts on the entire family. You all are in my thoughts and prayers too.
Peace and Love,
Heather
November 15, 2007
Thanksgiving came early to our house this year by way of Roger's MRI from this week. The tumor cavity continues to close up in the frontal lobe, the tumor in the occipital lobe actually shrunk a little since September's scans (shrinkage can be a good thing!), and the non-enhancing areas in the temporal lobes are unchanged. YAHOOOO! So the break from CCNU afforded Roger not only an improved appetite and activity level, but we didn't lose any ground with the tumors.
So no change in protocol for now and he goes back again in mid-January for another MRI and oncology appointment. That, my friends, is one heck of a good birthday present for the guy who's tough to buy for!! His bday falls on Thanksgiving this year and I know what we'll all be toasting: health, happiness and all our amazing friends and fam who are supporting us.
"The most important things in life aren't things." -Unknown
With Gratitude & Cheers,
Heather and all the guys
November 2, 2007
The month of October is a blur. We took full advantage of all 31 days in the month....
Where to start? Well I'm happy to report that the appetite stimulant was extremely successful. So successful in fact that on several occasions, Roger would wake up in the middle of the night and raid the kitchen. All good. On one midnight run however, he was craving a frozen pizza and so marched himself to the back door out to the garage freezer and BAM! neglects to notice the flashing red light on the house alarm keypad (e.g., "System is Armed") and therefore trips the system to the ear-piercing siren. He proceeded to the freezer and was just coming back into the house with his snack and I come barreling down the stairs with a golf putter, heart-pounding, adrenaline-pumping and ready to do battle with what I assumed was an intruder. Ha. Try and get your heart to slow down after that one...I can laugh about it now (I wasn't exactly cheerful at that moment-LOL!).
Nevertheless, the stimulant has really done wonders. Roger hasn't taken any of it in weeks, since once he got going again on food, and therefore felt better, he would get out of bed more, and work up a natural appetite, and then the circle just keeps going. Hooray! Small achievements that make a world of difference. And he has felt much improved just overall. Don't know if it's the break from CCNU, getting off the other meds, or just going through a great phase, but we'll take it.
Thanks to our fabulous friends the Finholms, Rog and I got a little adult weekend away with Tim and Jacquie. They asked Roger where he'd like to go, and he said "New York--best city in the world". Well this worked out extremely well since we had been meaning to do a NY weekend with those 2 for years. Plus it was Jacquie's maiden voyage to the city that never sleeps! Lots of eating, laughing, walking, and reminiscing. Roger definitely misses not getting out to the city on a regular basis as he used to with his job. He still remembered which subway line to take to get downtown to the financial district, where the NASDAQ offices were located, hotels we'd stayed at in the past and more. Kudos are also in order for Craig and Brenda Eischen for lining up our swanky dinner out at Spice Market and spending time with all of us. I don't think we could ever tire of visiting NY!
Y gracias tambien to my cousin Greg, his wife Lisa and their kids for letting Hayden, Brady and I do a little So Cal visit while the boys were off school for fall break. It was a surprise trip for the boys and they had a blast. Getting to hang with their second cousins, a day at Laguna Beach, and then 2 days at Disneyland/California Adventure. This was their first-time to experience the "magic kingdom" and they were lapping it up. Favorite attractions? At Disneyland it was the Jedi Experience for both of them (with a close second to Space Mtn for Brady and Indiana Jones for Hayden) and for me it was just seeing their amazed faces, laughing a ton, and giving them 100 percent of my attention for a few days. Oh yeah and seeing Brady chase down characters to get their autographs! Thanks to Roger's mom, Mary, who stayed here with Rog so I could do the trip with the boys.
We closed out the month with only one medical-type procedure: Brady had to get his bottom 2 baby teeth extracted. His adult teeth had come up behind the baby teeth and those baby teeth required some serious dental tools. eeek. Brave kiddo and let's hope that's it for a while.
Thanks to all of you who keep in touch, help us out, pray for Rog, and make us laugh. We're just grateful for this spell of stability right now and are doing all in our power to maximize each day. "Carpe diem"!
Love and Peace,
Heather and family
October 3, 2007
Well....after lots of "sleeping on it" and mulling things over, we reconvened with 2 of Roger's docs today. I feel pretty good about the meeting and it was very helpful to have everyone involved all in the room together. Essentially it came down to this: Roger has had 2 scans in the past 6 months that have been stable/no apparent change in the remaining tumors. While there is no protocol that dictates how long a patient needs to have stable scans before one would consider taking a break from chemo, Roger's oncologist has typically waited until around 9 months (or about 6 cycles of the chemotherapy agent). Roger has had 4 cycles of CCNU so far---the chemo we switched to when the Temodar wasn't keeping the tumors in check at the beginning of the year. But she is in agreement that if Roger wants to take a break now, she is fine with giving it a try.
So......Roger is going off the CCNU at this point. He will remain on Tarceva ( Tarceva is designed to block cell tumor cell growth by targeting a protein in your body). He will go back in for an MRI in November.
We also are going to taper off his Propranolol (a beta-blocker that slowed down his heart rate to control the hand tremors) since he no longer has that problem; and his Doxycycline (one of the antibiotics he was taking to counteract previous reactions to the Tarceva (long since remedied). But he does need to start taking an appetite stimulant in the hopes that we can get him eating a bit more.....he's gotten way skinny and we need to put some "meat back on his bones"! So a net decrease in 1 of his meds and he's now down to 12. Ha. Now it doesn't sound like much of a change!
I feel like I can breathe a bit as this dilemma was hanging over us for the past 3 weeks with all the "what ifs". We now have a game plan and will proceed with it. Obviously if anything changes in Roger's physical or mental state we will be in to see his oncologist immediately, but I'm feeling good about hopefully alleviating some of his problems with this shift (it's "baby steps" but at least it's a start).
On to the F&F (fun and fabulous) news front. All 4 of us attended the CU-OU game last Saturday in Boulder. Thank you Jill, Jim and Taylor (you will always be Bubba to us) for getting us tickets!! The boys had a blast seeing Taylor run Ralphie (the best college mascot ever) and experiencing such an amazing game at Folsom Stadium. WAY TO GO BUFFS! Brady wanted to rush the field with the rest of the college students....(he did not like being told "no")....ha....too much foreshadowing perhaps of his future antics?!?!
And I'm happy to report that our youngest nephew Trey is now calling Roger "unck-ah" and me "ann-eey". It's the little stuff that makes your day, you know?!?! Watching Hayden and Brady play their hearts out on the soccer field, enjoying some gorgeous Colorado fall afternoons (translation: 80 degrees, sunny, leaves just starting to turn), watching our older nephews play football, watching the Rockies win.....aahhh. Hold on to those good thoughts.
Love and Luck and Peace,
Heather and family
September 19, 2007
Last week's MRI showed no major changes. No growth, no shrinkage. I guess I always go into these appointments hoping for more. Hoping for some sort of miracle in which the doctor is going to tell us that the tumors have disappeared, that Roger's short-term memory function will repair itself, that he'll be able to go back to driving in a few months, and (most importantly for him) that Roger will be able to return to the work/profession that he so enjoyed. No such luck. It's becoming more and more crystal that while stability is good (and an accomplishment in itself), it's just extremely optimistic that an individual can ever be completely rid of the effects of a GBM.
This has led to much debate. Roger has been suffering more physically than in the past. While last year it was more noticeable externally that he was battling cancer (e.g., the hair loss from radiation, the redness and puffiness from the steroids that affected his face), this fall it appears to be more of an internal battleground for him (nausea, inability to keep food down, etc.) but yet on the outside everyone is commenting "how great he looks". Tough. Because he and I want both for him.....to feel good inside so that he has the energy and wherewithal to enjoy everyday activities, but also the confidence boost that comes with not being readily identifiable as a "cancer patient". So for now.....Roger did not take his scheduled round of CCNU and he will wait until we come to consensus with his medical team. We met with one of the clinical psychologists who directs the brain tumor support group today and hope to loop back in with his oncologist next week.
Otherwise......the boys are back into the school routine and thriving. Hayden is thrilled to have chemistry labs and Brady continues to come home immediately after school and knock out his math homework. Clearly their interest in these subjects was inherited from their dad. The four of us squeezed in a quick mountain escape over Labor Day weekend to a dude ranch outside of Granby and pretty much our weekends are filled up with soccer games from here through early November. Busy is good.
Lucy is doing well with our new "Aussie approach" training/obedience. Thank you Suzy for that referral---it's working wonders. And Roger has been temporarily relieved of his status as "primary patient" in the house since last Friday Lucy sliced open her paw and had to have surgery. So for now, I am dispensing meds to both human and canine patients.......
Onward day by day.
Peace & Love,
Heather
August 1, 2007
Yesterday's blood draw revealed that Roger's platelets had bounced back up above 100 so he received another 100mg of CCNU. A few new drugs have been added in the past week or so--the most newsworthy of which is Dilantin. Roger suffered another grand mal two weeks ago while we were at the bi-annual Hogoboom family gathering and that basically put me over the top. Two seizures within 2 months......and this most recent suffered with Hayden at his side. Aaaagggghhhh! My ranting voice mail to the oncology nurse resulted in the addition of Dilantin, which is on top of the Keppra anti-seizure medication he already takes. So far, no major side effects--at least that are any different from what he's used to--so I am praying with all my heart that this will keep Roger seizure free (or at least make the likelihood of recurring seizures incredibly small).
| The statistical board: |
| Rog's variety pak of meds: |
13 |
| Hayden's time in the 400m: |
80 |
| Lucy's weight: |
85 |
| Seizures to date: |
6 |
| Brady's # of strokes in putt-putt: |
averaging 6 |
| Days left until school starts: |
13 |
| Number of months "living strong": |
15 |
Until next month....peace and happiness to you all,
Heather
July 17, 2007
Delinquent. That's what I've been this summer when it comes to keeping the
website current. My schedule is not my own" and I've got 2 boys with full
agendas that primarily include being a) away from the computer, and b) that
allow me barely enough time to text an abbreviated, fragmented text message
at best. But it's all good!
Roger had his regular oncology appointment today and all is well.
Well....almost! His platelets are currently too low to take chemo......so
he's got another 2 weeks to rest and get them back up above 100 before he
gets another round of CCNU. He continues to taper off the steorids and this
is fabulous. His doctor is doing some switching with a few meds to try and
help ease the nausea and if she can get that figured out, Rog would be a
very happy camper indeed.
Otherwise, so far the summer of 2007 has translated into:
- sports camps
- dinner picnics with friends
- swimming
- all-day track meets (did I mentione HOT?!?!)
- visits from fabulous friends
- playing tennis
- yurt camping with the Finholms (we'll be back to tackle the caves next time!)
- Cirque du Soleil (the boys first time)
- sleepovers
- Rapids' soccer games
- Harry Potter & the Order of the Phoenix opening night with Uncle Rich
- wonderfully relaxing BBQs with great friends and family
And for Roger, the continuation of 10 different meds that he
oh-so-cheerfully takes twice every day, some with alternating schedules,
requiring a fun spreadsheet document in order to keep us all straight.
(Yes, we employ a little sarcasm in our daily lives to keep us on our
toes..... But I digress.)
Rog has been extremely thankful for the guys who have snatched him for a
night of shooting pool, bowling, or working out, or hanging and watching a
movie. All I can say is thank you so much and keep it comin'!
Here's to enjoying summer,
Heather, Roger, Hayden & Brady
June 8, 2007
TGIF in more ways than one!
A full yesterday....MRI and blood tests in the a.m. and then a LOOOONG
afternoon until we finally met with Roger's neuro oncologist Dr. Damek. But
it was worth the wait: his most recent scans look good. No new growth in
any of the tumor areas so the CCNU is doing a good job of keeping things
stable (a word we've grown to like around here)! And Roger gets to taper
down again on his Dexamethasone (which controls swelling) since he doesn't
have any worries in that department right now. We'll be back in another 6
weeks for another dose of CCNU, and another MRI in 3 months.
So......we've got lots to celebrate this weekend! The boys officially
finish up the school year at 11:30am today and then we can start summer off
in style. Swimming, track, tennis, sports camps, sleeping in (what's
that??), concerts, camping.....let's do it all!! Rog and I did get it
started last weekend thanks to our friends Tracy & Pete who treated us to a
night at Red Rocks to see one of our favorite bands--Big Head Todd & the
Monsters (for those of you with Colorado ties-- remember when they played
The Walrus in Boulder and there was no cover charge?!?). It was a crazy
Colorado night on the Rocks.....a little sprinkling of rain, then a quick
hailstorm, then a gorgeous moon and clear night to finish it all off. Oh
yeah. And having Roger go M.I.A. for about 10 minutes (felt like hours).
Splitting up at the restroom lines and agreeing to meet up right outside
unfortunately is the kind of immediate/short term memory stuff that has been
zapped by the tumors/radiation/chemo. So after some quick cell phone calls
back to the group at the seats, an all-points bulletin was issued for Rog
and thanks to the party group of 20+ people, someone in our group found him
(to Roger's credit, he called me from his cell but couldn't hear me telling
him to stay put 'cause it was so loud obviously). Thank you friends and
friends-of-friends that night---I'm very grateful! And Roger DOES remember
the concert so perhaps there's some "selective memory retention" going on
here.......
This Sunday June 10th from 2 to 5 pm is our very informal gathering at the
park (see previous post below and click on "Fairmount Park" for a map).
We'd love to say thanks to all of you out there who have helped us make life
manageable this past year . . . it's a big milestone.
Smiles,
Heather
June 5, 2007
Just a quick note to let ya'll know that Roger's MRI has been bumped to this
Thursday, June 7th. Unfortunately insurance approval didn't come through
until yesterday, and by then, they couldn't accomodate Roger into the
schedule. I'll post the results by Friday...... Until then, LIVESTRONG!
-Heather
May 15, 2007
It was exactly a year ago that Roger and I sat in a neurosurgeon's office and were shown his MRI films. We had spent the weekend trying to act as normal as we could when inside we were both anxious and scared as to why they had kept him so long in the radiology department that previous Friday. I'll never forget that doctor's face and how he bluntly stated that it was amazing that Roger was even functioning....given the extent of the tumors. That day was overwhelming to say the least, especially all the scary statistics that were thrown at us in terms of life expectancy.
Well here we are 12 months later and I'm proud that Rog has "beat the odds." Being a 1-year cancer survivor with a GBM is a major accomplishment and I want to reiterate how much we appreciate everyone out there who has helped us during the past year.
In celebration, Roger, Hayden, Brady & I are throwing a survivor
"PARTY-AT-THE-PARK" on Sunday, June 10th at Fairmount Park in the Golden area.
Stop by anytime between 2 and 5 pm for cake and watermelon on us!
We'll have frisbees, volleyball, soccer, etc. for kids of all ages. Please BYOBeverages (plastic or aluminum containers only). All are welcome----we will not be doing any formal invites for this---just posting here and word of mouth. If you can stop by, fantastic! If not, no worries and please know that we understand.
On a related note, several people have inquired about the Angel Adventure Walk for brain tumor research. The Denver date has been moved up to June 9th and unfortunately conflicts with something on our family calendar. We made such a huge impact last year with "Roger's Road Warriors" and are still glowing from your support and participation on that one! We are thinking ahead, however, and want you to know that we plan to do the 2008 walk. In the interim, if you are interested, you can go to the Denver Angel Adventure site.
I also have a former colleague who is organizing a Denver team in support of her boss on the East Coast who is battling a GBM. I would be happy to put any walking/running fiends in touch with her if you'd still like to participate in this year's Denver event.
And finally, YES, we made it to Florida at the end of April! Roger took his chemo on the Friday prior and we flew out the following day for a week of relaxing, shell collecting, boogie boarding, floating in the pool and watching sunsets. Thank you Mum & Dad for renting the beach villa...it was fantastic. Thank you Erin & Rich & Trey for joining us as it was great fun to witness Trey's first experience at the beach, and wonderful to have "many hands on deck" to juggle the desires of 3 boys (Hayden, Brady & Trey). Thank you Uncle Dick & Aunt Millie for driving up from Ft. Myers to come see us all (Roger's great uncle to be exact).
Let's hope for a relatively calm summer ahead. The "no news is good news" mantra will be in effect and I'll try and post just a monthly update to keep you all in the loop. Next MRI is supposed to be June 5th......
To a happy & healthy summer! Love & Thanks,
Heather
April 12, 2007
No chemo this week. Roger's white blood cell counts were too low on Tuesday and
Dr. Damek therefore has postponed his next dose of CCNU until April 20th.
Otherwise.....we are just taking it day by day.
Until next time,
Heather and the fam
April 1, 2007
I think I hit the "wall" the latter part of March and was just unable to put my
finger on precisely the appropriate amount of info to share. Or maybe I was just
suffering writer's block. So here we are at the beginning of April which means
Roger has been battling this nasty cancer for 11 months. That in itself is
reason to celebrate because the statistics for Glioblastoma patients are so very
grim. So on the bright side....
The month of March flew by!
More skiing with the boys.
The start of the outdoor soccer season.
Spring break.
Hayden racing in the national NASTAR finals in Steamboat (he did great---there
was plenty of anxiety, lots of stiff competition, but he finished in the top
third of the pack and most importantly had a blast and wants to do more).
A small scare with Roger's platelet counts just last week (they dropped to
42,000 which resulted in repeat blood tests all week...by Friday 3/30 they had
bounced back above 50,000 so therefore he doesn't have to get a transfusion.
Hooray!!)
Dancing up a storm at cousin Shawna's wedding reception just last night (yes,
Rog & I can still get jiggy with it).
Our next appointment with the neuro-oncologist is
April 10th and Roger will receive another dose of CCNU at that time. The plan is
still to wait until that 6 week cycle is completed before doing another MRI in
late May. In the meantime, we've been cleared for a beach trip by his doctor.
Yay! Thanks to my mom & dad for renting a beach house that will accommodate the
4 of us, my parents, and my sister Erin, brother-in-law Rich, and their little
guy Trey. We are going to Anna Maria Island on the Gulf Coast of Florida---a
great little beach town the 4 of us visited back in 2002. So keep your fingers
crossed that Roger will continue to be stable and able to enjoy some fabulous R
& R (I am relieved to report that we are staying within 10 minutes of the local
hospital just in case). Until then, no news means good news around here.
"Follow your bliss and don't be afraid, and doors will open where you didn't
know they were going to be." -Joseph Campbell
Love & Peace,
Heather and the clan
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