April 7, 2007
Vern had his best appointment yet at San Francisco. After the MRI downstairs at Parnassus Street, there was only scar tissue left around the original tumor. This was the first time that the doctor was mentioning the word "manageable condition" for Vern. Great news!
December 6, 2006
Vern went to San Francisco to see the neuro-oncologist at UCSF. After the MRI downstairs at Parnassus Street, she said was VERY pleased at with the tumor. Only two little slivers remained after radiation this past summer!
August 6, 2006
Vern finished the six weeks of radiation therapy last Friday in Carson City. All told, Vern did quite well. He was still out mountain biking with Dylan from Spooner Summit along the Flume Trail and down to Carson City on Thursday. There is some minor hair loss! He hopes it will grow back!
June 10, 2006
On Vern's last visit to UCSF on May 19 the MRI's revealed a small growth in the tumor since last September. Margaret and Vern visited UCSF again on June 5 for a long session with the Chairman of the radiation department. It was decided that Vern needs six weeks of radiation therapy starting this June. The doctor seems pretty positive about the procedure and indicated that Vern can have the treatment done in Carson City rather than at UCSF. GOOD NEWS for all concerned!
January 28, 2006
The scans on last Thursday were great. The docs said that the tumor was "very stable". We like that kind of news. Next tests are in May.
September 22, 2005
The neuro-oncologist at UCSF said that Vern's latest MRI's were "superb". There has been no growth since the operation, and the scans are the same as January 2005. Great news!
May 21, 2005
Things were still very good last Monday. The neuro-oncologist at UCSF was happiest that the tumor was still stable, and was very pleased that responded so well to chemotherapy last summer. Next check-up is scheduled for September 21.
January 21, 2005
GREETINGS FROM THE VERY SNOWY EASTERN SIERRA ONCE AGAIN!
The very latest test results.
"the neuro-oncologist at UCSF was very HAPPY on Wednesday. The MRI showed
that the tumor had shrunk a bit again, even without chemotherapy, and the doctor
said that it was stable at this time. It sounds like they cannot ever use the
word "remission" until many years have passed, but we couldn't have
hoped for a better test and visit at UCSF"!
The next MRI and visit is set for the middle of May.
October 26, 2004
GREETINGS FROM THE VERY SNOWY EASTERN SIERRA!
VERN WANTED TO SHARE THE FOLLOWING INFO W/EVERYONE REGARDING HIS LATEST TEST
RESULTS.
" the MRI (using a very advanced machine at UCSF) results last week were great.
The tumor may have shrunk a bit too. The neuro-oncologist said in quotes "if
it's not broken, don't fix it", meaning no chemo or radiation for the time
being. I do expect to have to go through all that some day, but for now I just
wake up and do one day at a time...."
A personal note from the Clevenger's:
"The thoughtful concern and caring we've felt is overwhelming. We don't think
anyone can grasp the part they play in getting us through this. This is a hard
route and the sheer mindfulness of people is like a huge pair of arms carrying
us along".
October 1, 2004
For all of keeping track of my family and via my WEB page. I've sent this out via snail-mail but it works here just as well!
Vern
I
know that days, and weeks, and then months have passed by this summer …
Margaret
and I want to thank you for all your support last spring and summer. These past
many months have been very difficult for my family and me. The financial
contributions, and each and every card and prayer, have all made a huge
difference in our lives. In the past, I’ve sometimes forgotten what an amazing
community we’ve built here in the Eastern Sierra, and now I start each day
with a few moments of thanks for all of you.
Margaret,
Dylan, and Sabrina, and I started with the surgery in late March and then the
recovery in the weeks and then months afterward. I started chemotherapy for two
months and then stopped, and I contracted pneumonia for six weeks in the summer.
For awhile, I couldn’t make the walk around Lake Mamie, but it’s later in
September now and things are feeling better. We’re starting to put life back
together with school starting again. I can work some. And Margaret and I hiked
to Lake Ediza last week.
The
tumor did contract a bit during the months of chemotherapy and now we’re just
waiting for an October trip to San Francisco for more MRI’s and a visit with
the neuro-oncologist at UCSF.
Please
keep my family in your hearts and prayers in the months and years ahead. And
once again, thanks so much.
Vern
6-10-04:
Hello Friends,
It’s been a long time since you have had an update and apologize for the long wait and neglect you’ve tolerated while wondering. Juggling has been the one constant for a good three months now: doctors, medications, illness, fatigue, trips to Reno and San Francisco, kids, work, a “move” the first week after our return, drops in grades at school, emotions. It’s taken the word stress to new levels for us. At some point, balls that were in the air just simply began to hit the ground.
As you know, the surgery took place on March 31. We stayed in San Francisco for two weeks after Vern’s release. We’ve received calls, letters, cards, visits, monetary gifts, and e-mails from near and far. Though we have been living a terrible nightmare, our hearts are warm from all the kindness and concern. Every smidgen of a heart-warming act or thought, offers made, silent prayers, mindfulness, has mattered and is appreciated. The monetary support of the fundraiser and medical account were beyond words. Being self-employed, this would have delivered us a blow that, this late in life, would have been hard to recover from. It’s an embarrassing subject to address. We have excellent insurance, but the costs beyond the insurance inevitably were becoming insurmountable. Thank you for relieving us of this financial stress!
At first, it seemed Vern would breeze through this because he did so well immediately after the surgery and because he’s, well, y’know, Vern. Symptoms were masked by Vicadin and steroids; and once he was weaned from the many medications (27 pills daily), he settled into recovering from the operation. His fatigue overwhelmed the family unit. By the seventh week, he was finally feeling pretty good. Then treatment began. The first 16 or 17 days were tough. The past three days were pretty good, which brings us to, now – today.
As of yesterday, I began a medical leave of absence from work to only take care of Vern, the children, and myself for a period of time. Our hope is that this respite from the intense stress will give us an opportunity to step back and take a look at how to create a new “lifestyle” for the next year as he undergoes his chemotherapy. We’re hoping there will be some sort of “normal” that we can adjust to.
He takes Temodar, which is the only chemo that will go into the brain. His tumor is in his brain, not on it. The brain has a very special “protection” that no other organs seem to have, called the blood-brain barrier. It keeps everything out, including medicine. We are very fortunate to live in these times. A few years ago, this surgery could not have been performed; and this particular chemotherapy did not exist. Though he’s had this tumor for a long time, we’re quite fortunate to have discovered it only now.
We make a trip to San Francisco once a month regarding his treatment plan over one year, though he actually takes his medicine at home in pill form. We leave on Wednesday to begin the second round.
All in all, though this is a tough diagnosis and treatment, it’s not the worst-case scenario. Vern feels lousy a lot, but he feels less stress since the bulk of the tumor was removed because the pressure is relieved from his brain. We just didn’t know it was there!
He’s been out shooting since the surgery and was relieved to see he hasn’t lost his touch with the camera. He’s excited to make new work and to work in general - but he’ll have to pace it. He just returned from a bike ride and had fun!
And through it all, the kids pulled the grades at school, despite changes in schools/towns and then this ordeal. Dylan made new friends, skied hard and steep, maintained a best-friend status with his guitar, and crocheted headbands, hackey-sacks and about 30 hats, including a cool one for his Dad on the day of the surgery. Sabrina made new friends, had a lead in her play shortly after the surgery, remained very serious about her karate, and is getting ready for her “dance” performance/extravaganza on Saturday. Margaret orchestrated home, family, and work. We don’t know if she’s lost her mind and is trying to fake it. Perhaps sometimes that’s the only thing to do. Life goes on!
We look forward to seeing you and hearing from you throughout the year and beyond and will update again at some point.
P. S. We’ve returned from San Francisco, and everything looks good so far regarding their end of things; however, the symptoms he’s been experiencing the past month do not appear to be related to the tumor or the treatment. After more running around upon our return – doctors and tests in Mammoth and Bishop to eliminate “really scary” things – it appears he likely has bronchitis. Unfortunately, I had to cram him into a compact car to drive him to San Francisco. He pulled a back muscle coughing in such a cramped space, and he’s been in a lot of pain the past few days. So we’re sorting things out one thing at a time. He looks good again and feels better today, comfortably and correctly medicated. We’ll get him in tip-top shape so he can continue with treatment and move forward!
5-4-04: Finally was able to talk to Vern at length
regarding the specifics of his tumor & treatment........
Type of tumor is Oligoastrocytoma, grade II. As mentioned in previous updates,
it is a slow growing tumor & he has been told that something else "could get
him" before the tumor does. He was told that this is the brain tumor to have if
you are going to have brain cancer!
Vern has chosen UCSF (San Francisco) as
a place of treatment. His first appt is Mon, May 18. Treatment will consist of
temodar, a "mild" form of chemotherapy
which is taken orally for 5 days, every 28 days for 1 year. Temodar is used to
treat patients with low grade brain tumors. UCSF said that studies have shown
that radiation for this particular tumor does not lead to increased life
expectancy so he will not be undergoing radiation.
Vern will also have an MRI for the 1st 2 or 3 months, and then every 2 months
afterwards for this 1st year.
Although Vern looks great & his recovery is going quite well, he still feels
incredibly tired. He also feels like he has constantly been on 2 glasses of wine
for the past month (a feeling most sought out in their youth?! but not so
welcome now!) He is starting to back off some of the meds & is feeling better
but the tiredness is still very prevalent.
Certain tasks are stressful like driving & he's not doing much of it & certain
tasks are confusing like trying to do paperwork, but as time passes so will the
stress & confusion.
I have & I'm sure others have had to remind him that he
DID just have brain surgery only 5 weeks ago! He did get the ok to try some easy
alpine skiing next week...........
Leslie
4-10-04: The Clevenger Fundraiser last night was
extremely successful as well as a very fun event. It was standing room only at
one point! We are thrilled
with how everything turned out. The Eastside is a very special place & the
sense of community here is strong & very supportive. THANKS to everyone who was
involved. The donations that have come in so far have made Vern & Margaret feel
much more at ease during this difficult time & thank all those who have
contributed.
VERN UPDATE
We weren't able to connect with Vern until late yesterday afternoon due to a
downed fiber optic line (?) which crippled at least part of the Eastside for a
many hours. There was no phone or internet service & the banks actually closed!
"A picture is worth a 1000 words" So here's 2000! I couldn't decide which photo
to send....
These were taken yesterday of Vern sporting his new "Frankenstein Do".
He said there are 62 staples which I believe were removed yesterday.
Vern says the pathology report did confirm the tumor as being malignant & he
will start chemotherapy in 2-3 weeks. The "good" news for bad news, is of the
classification of a Grade II tumor (low grade/slow growing) .
Vern sounded in good spirits, just tired. After a 5 mile hike on the beach he
was told by MD's that "a walk" should be limited to a few trips around the
block.
The Clevengers will be back within the next few days & we'll get more info when
they return.
Leslie
4-4-04: Margaret called Sat evening to say that
Vern was discharged around 2 pm from the hospital!!! The thought is that his
high fitness level is helping him greatly in his recovery. He has been alert &
relatively active since the surgery which isn't quite the norm for ICU patients.
Margaret said there were already "Vern stories" in the short time they were
there! Vern & Margaret will need to stay in SF until April 11.
Due to the swelling related to the surgery, Vern is experiencing "expressive
aphasia"; he is mixing up his words & is totally unaware of it. This is normal &
will subside after the swelling goes down. It's presenting a bit of an
interpretive challenge for Margaret! She also said Vern was not able to keep his
"do" & is sporting "the Frankenstein look" (due to the incisions & staples but
only on one side of his head).
She is tired but in good spirits. Vern sounds just like Vern! Well, maybe a
little weary, but not much!
The Clevenger's have already met w/the oncologist as it appears that all signs
point to malignancy, although the word "cancer" has never been used.
Results from the biopsy are due back on Thursday.
Official diagnosis will be made at that time along with a plan of treatment.
The Mountain Light Gallery has posted an article on Vern that appeared in the
local newspapers a couple of weeks ago.
http://www.mountainlight.com/news.html .
Raffle tickets for the fundraiser are also now available at the Snowcreek
Athletic Club & Basecamp Cafe in Mammoth .
3-31-04: There will be a fundraising event at the
Mountain Light Gallery on Friday, April
9th from 6 to 9pm. Peter Croft will MC this event, and In addition to art,
photos, sculptures, and paintings, there will also be lodging donations from
Rock Creek Resorts, Rainbow Tarns, Tahoe Unique Retreats, a condo in Killington,
VT on the golf course (2 seperate weeks, during fall colors!), and much more.
Wine and appetizers will be served.
3-27-04: I spoke w/Vern this am. He's feeling fine and sounds great considering
everything that is going on! Vern is very appreciative of all the communications
he's been receiving but hasn't had time yet to respond to all of them. He says
that presently, the best way to communicate w/him is
via email or cards.
The Clevenger's leave tomorrow (Sun) for SF. Vern goes in for multi-hour surgery
at UCSF 6:30am Wed, March 31. When the family feels ready, Vern's brother Larry
will call sometime after the surgery and I will report on Vern's condition at
that time.
POTENTIAL VOLUNTEERS & PRODUCT DONORS, PLEASE SEE BELOW
VOLUNTEERS
I have everyone who expressed interest listed but haven't had the time yet to
setup a separate emailing. I will post other tasks later as they come up.
Please let me know if you are able to help with the following:
- We would like to have a raffle but we need someone to do the footwork on this, ie get tickets & distribute to people/ places to sell & collect $/ tickets before the event on April 9. Ideally, it would be nice to have someone for Mammoth & someone for Bishop. But if someone wants to do both, then that's ok too!
- For the April 9 Event, the Mountain Light Gallery will need help in setup & clean up. I'm not sure yet how many people we'll need for this.
DONORS
If you haven't done so already please send me retail value (starting bid will be
based on a percentage of this), item description, & your mailing address.
Thanks everyone!
Leslie
You can also make a donation by sending checks to:
Vern Clevenger
3612 Ranch Road
Bishop, CA 93514
or simply bring a check into either the Mammoth Lakes or Bishop Bank of America and make them out Vern Clevenger Fund.
Please be aware that the Clevenger's cannot acknowledge donations made directly to the bank as they are anonymous.
You can sign up for Email updates at dittli@earthlink.net