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Just an update

by arlo tejada 15. July 2013 08:39

Just an update


I have been trying to get this update out for weeks now. I have pages and pages of different starts. Different thoughts and feelings.

But….

In the end I think I just need to get something to you.

Here are just the nuts and bolts.

I will start after the last biopsy I got in May. I started doing the Brentuximab drug right away. Which was the drug that got me in remission to start with.

I started that on May 10.

The treatment went well and no really issues.

I had assumed or hoped that this same drug would get me to a remission again.

MY plan was to take 3 cycles of the drug then do radiation to the stomach and go from there.

I was supposed to do the second cycle on May 31st. I called up to double check the time and it turns out the dr office had forgot to order the drug. I was pretty upset about this. It really messed with the schedule at work along with a lot of other things.

I ended up doing the treatment on Tuesday June 4th.
playing on cat
To break up this little straight to the point update. I did do one very exciting and fun thing in between. I went on a private Cataract Canyon trip with several of my close friends including my brother. This also happened to be over my birthday. To add to the excitement I took my 9ft “mini-Me” boat through with my friend Zacharia. The level was pretty big probably around 23000 Cubic Feet Per second. To give you prospective I know several commercial companies pull their 18’ row boats at 15000.

BD2We did end up flipping in one of the bigger rapids Big Drop 2 ½ also known as the “claw.” We ended up having to hand paddle to shore RIGHT above the next rapid…Satan’s gut or Big Drop 3. Pretty exciting. The rest of the day we play horseshoes and told stories /lies on the beech. I am pretty sure I have never had a better birthday.

I had another Pet Scan on June 25. And then a meeting with Dr. Prystas and then a meeting with the radiation doc.

The pet scan showed more active spots of cancer all around my stomach and intestines. The activity was very small. But in a lot of places. Like a shot gun blast.

Since the Brentuximab did work this time we did not do another cycle.

There was really no plan when I left the dr office that day. Talk of clinical trials or radiation and that the only real “cure” would be another more invasive bone marrow transplant.

I met with the radiation doc later that day. He was very young and rather indecisive. He also pushed for the BMT. He was very against radiation to the stomach area in such a large area.

Not a very good day overall.

I quickly called my mom and we started setting up appointments with the two largest lymphoma hospitals in the country. MD Anderson in Houston and Memorial Sloan Kettering in New York. Along with potential ones in Chicago, Minnesota, and Colorado.

We had already received a second opinion from MD Anderson about doing the bone marrow transplants in the first place. This hospital also see’s 28000 lymphoma patients a year. So they have seen more relapses that are similar to me than anyone in SLC and would have better idea of what has worked in the past.

We also set up a meeting with the BMT team because I thought it would be a good idea to talk with them again.

A Long Week:
We were able to set up a meeting with MD right way. These guys were incredible on the phone. Really customer service oriented. Not what you are used to when you deal with hospital. We had a ton of information before we got there. Including the issues with my insurance and such.

I flew from SLC to Den to Houston on southwest. My Mom met me at the airport for the flight from DEN to HOU. It was her birthday. I know there is no place she would have rather been but it did make me feel like shit. One hell of a bday present.

MD Anderson is like the Disneyland of Cancer hospitals. This place is immaculate. Thousands of volunteers running around serving coffee, helping people on where to go, there was a person playing music in the entrance it had a concierges desk even and an aquarium. Really an incredible facility.

Check in was also fast and efficient. I cant say enough about my experience there.

We met with the doc for a long time and went over a ton of studies and options.

He stressed that my treatment so far was perfect and that I should not blame anything on my treatment so far.

He really broke the studies and went into the ones he thought would work best for me. Really the reason why we went there. He also stressed that to get a “full” cure I would have to do a BMT.

arloWe flew back to SLC and met with the BMT in LDS hospital the next day. It was very informative also. The dr we met with had strong opinions about all the studies some he really liked and some he really disliked. The whole thing was very informative. It also made me more comfortable to do this BMT. Still not excited about it but…

I took a couple of day off for the 4th to head up to park city with friend and relax and not thinking too much, just play.

I flew to NYC on Saturday. We decided to go earlier to hang out with family. We had a bunch of BBQ’s and fun while we were there. We met with the dr on Tuesday July 9th. Sloan was nice but nothing like MD Anderson.

Very similar to the meeting with MD Anderson. We went over a lot of clinical trials. Unlike MD, Sloan had a lot of open trials going on.

He suggested one that was close to finishing up Phase one and almost in phase 2. Which is better for me. It also had one Hodgkin’s patient go into remission from the treatment. (not many Hodgkin’s patients are in studies and they only allow in 3 patients at a time so this is a good sign)

I came home on the 11th.

Now it is decision time. We still have potential appointments with other hospitals. But I think we are leaning to the Sloan one at this point.

I talked to  dr. Prystas in SLc and she thought it looked good. Also seems right in line with what most of the others where saying.

Another big reason for using Sloan is that it might be able to take my Medicaid. Which seems crazy to me but would be a huge financial relief. Though the drug and direct meetings will be covered by the study. Test and emergencies are not.

And the fact that I have tons of cousins around the hospital helps makes moving To NYC vs. Houston a lot easier. Especially if I have to be there for almost 6 months.

fishing with aRloThis journey would be so much harder without the help and uncompromising love of friends and family. First with David Everitt and his family to just give me their SLC condo for the first sets of treatment. Then Dasch who just let me moving into his basement for 6 month even though I had never met his wife Megan up to that point. (and probably more important Meg letting me move in) And now my cousin Marc is letting me move in with almost no notice. It is so so nice to not stress housing and just work on the treatments.

So Now

I fly back on weds to NYC for an entrance interview, which will be a lot of tests and such. None of which is covered in the study. I will be there for about 9 days. If I qualify I will fly back then load up my car and head out for the time I need to be there.

They do not really want me leavening after I start the trial but since my brother is getting married in sept I will have to leave at least once.

I have a more…emotional update I am working on but I don’t know when I will finish so there you go.

Sorry it took so long. I will try and do another one once I know more details about the trail such as how long I will be there, time between treatments and such.

Thank you all
Arlo


BDAY

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

Some news is worse than others

by arlo tejada 29. May 2013 15:19

Some news is worse than others

Arlo Paddle Capt.
After working in the office the last couple of weeks I have come to realize I needed to update the Sheri Griffith River Expeditions friends about my current situation. We had lots of return guests going on trips these last two weeks and everyone I talked with had read my blog posts and wanted to know more details. Since I tell the story all the time I just assume most people just know.


I have not updated since April 18th and in that update it was all about not knowing if “my” cancer had come back.


Sorry to leave everyone wondering what was up.


It is as close as you can get to bad news without it officially being bad news. I have had several biopsies. The first was inconclusive. The next biopsy showed abnormal cells. The dr said we could do a major surgery to be sure but at that point it was pretty much for sure to be the lymphoma coming back.


The plan are still a little up in the air.


I did start on the same drug bentuximab I was on last year on Friday May 10th. We are planning on doing this for 3 cycles. One every three weeks. Then radiation to the stomach which will be everyday for about 3-4 weeks. And means I will have to move to SLC in the middle of the summer for the second time in 3 years.


It sounds like the radiation is going to be ….not very fun. I will have a meeting with the bone marrow doctors to talk about the possibility of the more life changing procedure. But I think I have written many times about my thoughts on that.


SO, We are pretty much in uncharted territory here.


I will let you decide what that means.


disc golfI don’t really have the strength (mentally) right now to really go into anything to deep or how I am feeling.


I can say that I have zero Symptoms. I feel great! (physically) and SGRE is really, really busy which has keep my mind off sad or bad thoughts. I am just too busy to think about it. Maybe I am just burying my head in the sand….But


I have also been able to play a lot.


I think I am as close to living life to the fullest that one can. Still have not been to Hawaii or Puerto Rico, though. But Central America is on the plans for sure this November.


Just to fill one of my blog promises from earlier, I did buy a brand new car (it’s a Ford Escape and not a Porsche. Not sure my dad could handle the Porsche idea.)


I have also been living a solid Moab Life: A bunch of river trips, (though I still have not done Cataract Canyon in 3 years now,) Ziplining, BBQ’s with Friends and Family, Golfing, Disc Golfing, Music in the park, Hot tubs, new crazy hair cuts, and hanging with my dog and that is just in May. I would say I am generally enjoying life ever where I go. (My life really is pretty amazing I will be pretty bummed if it ends early.)


I say this every time and I do mean it but I will try and keep you updated more often in the next couple of months.


Thank you to all your support and I hope to see you this summer!


As always this is I appreciate all your love.
Arlo

Tags:

Arlo's Cancer Story

What Rapid is this?

by GriffithAdmin 3. May 2013 09:15

Name this Rapid!

Here is a hint...It is Cataract Canyon week.

Happy Earth Day!

by Kristl 22. April 2013 10:38

Happy Earth Day!

In celebration of Earth Day this year we would like to share a few of the ways that we work to protect the canyons and rivers that we work and play on.

Ye Old Geezer Meats

Shop Local

We purchase all of our meats and cheeses from a local butcher who makes sure that their products are fresh, healthy and delicious.  You can also shop locally in your own town--look for farmer's markets or "mom and pop" type of businesses.

Food Plants

Fresh Herb Garden

We have fresh herbs growing in our flower beds.  Try your hand at growing fresh herbs in your flower beds or boxes.  Not only do they add a fresh color to your landscaping, but they add fragrant aromas and can help with insect control.

 Strawberries!

Fresh Fruits and Vegetables

We also plant strawberry plants, Pepper plants and Tomato plants in our flower beds, both for variety and color.  Later in the summer we harvest some of these items for fresh salads.  Nothing tastes better than homegrown produce.  Try it out!

Recycle!

Recycle

We recycle glass, tin, aluminum, plastic and cardboard.  After every trip comes back from the river, our guides sort through the waste and make sure that anything that can be recycled is.  Little steps can go a long way when a lot of people take them.

Composting

Composting

Any produce that is left over from our trips is taken by guides Marshall and Nicole to feed their chickens and to add to their compost heap.  They then use the compost in their garden.  Composting can be done quite easily, and adds nutrients to flowerbeds, gardens and planters.

There are lots of little ways that you can conserve, reduce and reuse.  Happy Earth Day from Sheri Griffith Expeditions.

 

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What is this a Life Rollercoaster I am on?

by arlo tejada 18. April 2013 10:57
Wow, where to start an update I never actually thought I would have to write.

Arlo!Lets call this a rather bad week.

So, start with the little item, right.
It looks like the cancer has come back.

I had my scan on Monday. I really did not think much about it, except for the fact that the hospital messed up the registration and made me wait an hour and a half longer than I should have. I was really more worried about the fact that my truck broke down than I was about the pet scan. Things have just been feeling to good for me to think anything was wrong. But I guess that is why we do the tests.

I was online looking through the shitty photos from the Boston Marathon when I received a text from a friend asking how the test went. This reminded me that I should check my online chart and see the report.

I was in the basement of my friends Jon and Gretchen Fullers when I read the report I was in total shock. I thought there was a mistake and they had put someone else’s report in my file. Two sentence tell all:

“There is a mildly hypermetabolic lymph node in the anterior mediastinum having an SUV value of 2.6 and measuring 15 x 8 mm.” – In my chest

“There is a hypermetabolic mass seen along the medial wall of the stomach measuring approximately 3.8 cm and having an SUV value of 12.” –In my stomach

What these say is most likely the cancer has come back. The SUV is how active the cancer is. 2.6 is really small and 12 is not. Seems like I get all the bad news while I am in basements. I was a bit of a mess for a while. I was not sure I really should even tell anyone but I was crying too much to not tell.

I called my mom after reading the report several more times. She decided to fly out in the morning for my meeting with dr. Prystas. I was really hoping to have the Dr. tell me it was a false positive. I have zero symptoms. No weight loss, no night sweets, no exhaustion (I have been playing soccer and working out pretty regularly), no itching, no new lumps, really could not think of anything that would be a sign of cancer.

She did give some hope.

There are several different reasons for the report. Worse is that it is the Hodgkin’s coming back. This is also the most likely. There is also a chance that it is Non-Hodgkin’s. It is not uncommon for Hodgkin’s to move to Non-Hodgkin’s eventually. Rarely this fast. This is the best of the cancer situations. That is because it would be like a new cancer. And we could start from scratch with the non Hodgkin’s treatment. Next it could be stomach cancer. This also would be bad because stomach cancer is terrible.

Last it could just be an infection or ulcer or such. The issue with this is the second activity in my chest. And makes that rather unlikely.

So…. What Next. I am in the process of more tests. I did not do a CT scan this time with the PET scan. The CT is better at size and location. I did the CT scan here in Moab yesterday and waiting for the results of this. (see below)

Arlo Paddle Caption! We are hoping this will tell us if it is stomach or lymphoma. Next most likely I will have a biopsy done on Monday next week.

Well things change by the second around here. Just as I was about to send this I talked to Dr. Prystas and she said there was no noticeable lymph’s in the CT scan.
She is trying to get ahold of the radiologist to get some more answers.

WOW…What does that mean!

She really thinks (and maybe is hoping) It could be a false positive.

Now, Now What do we do?

We are going to have the CT scan sent to another Radiologist in Salt Lake to get another opinion. Then on Monday or Tuesday I will get an endoscopic test. “The endoscope is passed down the throat and into the stomach. This lets the transducer rest directly on the wall of the stomach where the cancer is. It lets the doctor look at the layers of the stomach wall, as well as the nearby lymph nodes and other structures just outside the stomach. “ –WebMd.

I guess that just means we wait. This rollercoaster is really hard on a person…but if I come out negative I should not complain. Might have an ulcer though.

I also bought a new car. Seemed like a good idea when I knew I had cancer and my other one was broken. Glad I did that yesterday! Ha.

I think I will end this hear and send out another one when I have more information.

(I know that is kind of like a cliffhanger on a Dan Brown novel.)

Thank you for all the support.
Much love Arlo

Tags:

Arlo's Cancer Story

The history of the Yampa River

by GriffithAdmin 14. April 2013 10:27
Yampa River History

 

The Yampa River, located in the heart of the Dinosaur National Monument on the Eastern end of the Uinta Mountain Range.

Geology
The geology of the Yampa Canyon begins with layers of sandstones, limestones and shales, giving the viewer a unique "look back" at the rising and dropping of an ancient sea. As you travel further into the canyon the sheer walls of the Weber Sandstone become predominant. As the river winds its way through a maze of walls sculpted by windblown sand, walls, such as the 1,000' high Grand Overhang and the stripes of the Tiger Wall will leave the viewer in awe.

 

Yampa River HistoryOnce you leave the Yampa Canyon and join the Green River, entering into Echo Park, the Mitten Park Fault will blow the viewer away. Just after Mitten Park the river enters into Whirlpool Canyon the billion-year-old Uinta Mountain Group formation and the Unique Sea Stacks enter into the geologic picture. Following a leisurely float through Island Park and the Morrison Formation (where dinosaur bones are found), the river makes a dramatic cut right through the Split Mountain Anticline.

More Information on the Yampa River Rafting History.

the Last Cancer update or second to last update

by arlo tejada 10. April 2013 16:08
So I started to write this update months ago after my last treatment in Salt Lake.  I finally, finally am getting to this. Only because I have my “final” PET scan on Monday. So this might jump around a bit.
 
Lets get to the details.
 
I finished my final.. Last forever complete.. end all/the one/  whatever you want to call it . I finished my final treatment of SGN-35(Brentuximab)  on January 8. (I know I should have written then.. but…
 
arloI think that little thing called life got in the way of that….
 
So I have been enjoying Life without treatments, without trips to SLC every couple of weeks, life without PET (well I do have one more (you know for fun)) Scans,  A lot less needles.
 
I can not say I am not looking at the potential of a relapse…Since I started down this path I have had 3 official relapses and lots of little ones. Anyone remember the open heart surgery conversation…just to get to a Bone Marrow Transplant? Boy do I.
 
I am still not out of the woods. The doc gave me 50/50chance of relapsing. The bone marrow folks still REALLY REALLY want to do the allogeneic stem cell transplant.  They are pretty sure the cancer will come back…
 
 I think I was pretty clear in previous posts about how I feel about this. I would rather die than have the type of life that goes with this transplant.
 
So I am just hoping for the best.  They (whoever they are) count cancers in 5 year windows. So the next five years are the big ones.  There is little doubt that a cancer will kill me eventually or some side effect from the chemo or radiation.
 
Things have been going really well for the past year. With each day really better than the last. It is odd to think about how I felt and where I was at even just a year ago. As each day went by I felt better and better and thought I was fully healed, but looking back I realize how weak and struggling I still felt.  Both physically and mentally. Even as late as August I was still really struggling.

It is amazing to think it was a little over a year ago that I started taking a drug that saved my life.(Wow that is kind of hard to write.)
 
I have my PET scan on Monday. I really am not that nervous but it still is…there. In my mind. Something I will have to think about for the rest of my life.
 
 
Thank you very much for your support and concern. Though this has been an interesting and sometimes very difficult journey I have learned a lot from it. Not least of which is how graciousness people are in this world. Even on my harder days it is not hard to remind myself how lucky I am for this town, my friends and the family that I have.
slide

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Arlo's Cancer Story | Arlo's Cancer Story

Westwatar Canyon Rapids...IN SPEED MODE!

by Sheri Griffith River Expeditions 10. April 2013 08:39

Watch a video of Westwater Canyons Rapids as if you are the guide. And in Fast Forward. This is from our first Westwater Canyon trip of the 2013 season.

The Rafting Season has started!

by GriffithAdmin 9. April 2013 07:48

Westwater Canyon Rafting in March 2013

We have already run our first two trips of the year!  On March 25th Sheri Griffith River Expeditions took down a group of 12 people on a sunny Westwater Canyon 1 day trip.

Moab Daily Trip April 2013
With Izzy and Arlo guiding, the trip went great! No unplanned swimmers and lots of fun whitewater. Yes, there were even some very brave ones that hopped into Colorado River for fun!


Chris also guided a a 1 day Moab Daily trip with a nice family from South Carolina.  The weather was a perfect 70 degrees and sunny!


Both of these trips were great trips to start off the season. Now the rush starts!


 

New Dates and Trips Open for 2013

Gates of Lodore on the Green River

4 Day Gates of Lodore

Westwater Canyon Rafting on the Colorado RiverThe Gates of Lodore on The Green River is one of the most popular trips Sheri Griffith Expeditions runs. It offers all the elements of a classic river trip: great hikes, exciting whitewater, beautiful beaches and colorful history. This is a journey into a spectacular wilderness. This trip has lots of activities and action. You can choose between paddling with friends in a paddleboat, taking on the rapids with one of our inflatable kayaks or relaxing in one of the oarboats.

Date: July 3

Rates: Adults: $925 Youth: $875


Family Rafting Trips on the Colorado River

2 Day Family Rafting on the Colorado River

Cataract Canyon bookingThe fisher towers section is a beautiful stretch of the Colorado River, with moderate class I-II rapids suitable for everyone. Boat options include oarboats, inflatable kayaks, and sometimes paddleboats. Mild Rapids make this section of the Colorado River especially fun for beginning rafters and perfect for young families. The river is wide and warm, making swimming extremely inviting on those very warm summer days.

Date: May 25

Rates: Adults: $350 Youth: $275


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History of Cataract Canyon

by Sheri Griffith River Expeditions 15. March 2013 08:17

Cataract Canyon History

Cataract Canyon lies in the heart of Canyonlands National Park 65 miles down the Colorado River from Moab, Utah and 110 miles down the Green River from the town of Green River, Utah. These two powerful rivers meet at the Confluence and combine to make some of the most commanding and famous rapids in North America. Cataract Canyon's rapids caused more damage and created more fear in early river runners than those of the Grand Canyon. Cataract's rapids are only part of the amazing story about this section of the Colorado River. Cataract and Canyonlands also has amazing human, and natural history, along with classical river running stories and adventures.

A few of the early River Runners:

  • Nathanial Galloway does the first solo trip through Cataract Canyon in 1894

  • Emery and Ellsworth Kolb traveled from Green River, Wyoming to the Sea of Cortez in 1911 on the Green and Colorado Rivers

  • Julius Stone Expedition runs cataract in 1909

  • "Buzz" Holmstrom makes a solo run of the Green and Colorado Rivers in 1937

  • Norman Nevills runs the first commercial River trip through Cataract Canyon in 1938

Congress established Canyonlands National Park in 1964 after a long history of "potential" development in Cataract Canyon. Before 1921 the Colorado River was know as the Grand River. Congress changed the name under pressure from the state of Colorado in the Colorado Compact, which also designated water rights to the sates that border the Colorado River. The Rio Grande Railroad tried to build a railroad from Denver to LA following the Colorado River in 1889. In the early 1900's steamboats carried mining supplies, fruits, and cattle between Green River and Moab using the Colorado and Green Rivers. There was also an attempted dam site at the Confluence in the early 1900's. The amount of sediment at this location made it nearly impossible to build.

Read More about Cataract Canyon History.