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A Decision of a Life-time

by arlo tejada 24. October 2013 07:24

 

arlos shadow

Hello my friends,

This is a happy and a rough update.

Not quite sure where to start.

I will just go in timeline order.

After my last update. I had an interesting week. Mostly dealing with the government shutdown and it’s effect on our town. I was even quoted in the Salt Lake Tribune: http://www.sltrib.com/sltrib/news/56990957-78/parks-national-utah-park.html.csp?page=1

The big event for me was getting sick on Saturday. Sunday, I had a solid cough with a little green. This scared me a lot. Knowing if this was bad they would kick me off the study.

By Tuesday the cough had not gone away. I called the clinic to see what I should do. They told me to go to the ER.

I spent the next 3 hours there. They ran me through a bunch of tests. In the end they decided I was fine and it was just a minor infection.

The next day I went to SLC with my buddy Larry to get my once a month CT scan. And treatment.

The scan went fine. (as can be for something that makes me feel like I peed my pants)

We also went to a very nice restaurant in downtown SlC called “the copper onion.” Very good food. My little shout out for this week. Dr. H recommend another restaurant for next time…so stay tuned for that. (I am sure you read this to get my opinion on restaurants in SLC)

The next morning Larry and meet up with another friend Ali went with me to the get the drug at the huntsman.

arlos shadowDr. Halwani: “I have news you are really really going to like!”
Me: “oh, I am I cancer free?”
Dr. H: “Pretty Much!”
Me: “nice”

I have what is called a complete response. Complete response??

That is fully a bullshit medical/drug company term.

For the past week I have been trying to figure out what that means. At first I thought this meant I was cancer free. I am not cancer free. I am very close. (which means nothing.) It is a drug company term for this drug works on you.

After rereading the CT scan report, I have realized that there is only one tumor they can see. It is 14mm by 8mm. Dr. H said anything under 15mm is consider complete response. I guess clinical doctors do not deal in remissions or something like that.

This is good news…I guess.

I had a concern that this drug would work too well. And then my next decisionwould be more forced on me more quickly.

I was right.

I have to make an official decision on to do the Allogeneic bone marrow transplant.

I can stay on the drug for up to 4 months more. That gives me a little time Iguess.

Here is what I have to choose from:

To do the Allogeneic transplant:


arlo hospitalThis process would be taking someone else’s stems cells. In my case it would be my brother as the donor. He is what they call a half match. Which is pretty new process. Normally they only transplant full matches. But some new studies have shown half matches are doing well in Hodgkin’s patients.

The BMT team would destroy my immune system with some kind of Chemo. Then implant (similar to a blood transfusion) Obe’s stem cells in my body. This would make me have a new immune system.

The advantage of this is that the new immune system would recognize the cancer as bad and attack it.

The issue is that the new immune system would also not recognize my organs and such. Therefore attacking me, they call this graft v. host. To help keep this down I would have to take immune suppressants. For the rest of my life.

I would be in the hospital pretty often, especially in the first year. I would have to change my life style, drastically. The sun would be a major issue. Places with lots of people would be an issue. Rafting would be very unlikely.

And that is if it is successful. And to make it even better…It might not even work. They give it a 40-50% chance. Though those might have been the stats with doing the BMT when the cancer first came back. (I can not always remember the numbers. There a lot of them)

Obviously those life changes are hard to think about. I might not even be able to accomplish them, I do not think I can be trusted to take pills every day.

On the other side.



To Do Nothing:

If I do nothing it is a much larger chance the cancer will come back. I kind of feel like it is gambling. But with my life.

So the decision is….

I hiked up to my one of my favorite spots in Moab to write this update hoping it would help me make a decision. Maybe by the time I get finished writing this update I had will have an answer to send you all.

Nope.

I have nothing. I wish my dog would be more helpful instead of barking at sticks that are too deep for her.

I planned on making this decision quickly and then I would not have to “worry about” any more. I also have a lot of things to do if I decide to do the BMT. Work, house, and more things to deal with before I am potentially unavailable for months/years.

But the more and more I think about it the less and less I want to make this decision.

To do the life altering/maybe saving treatment and to live…kind of.

Or

To do nothing and be looking over my shoulder forever. And forever could be very very short. But be able to…”live” in that time.

So I guess this is a “happy” update. But I am not overly excited about it.

I will update everyone once I really come to a final decision.

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

Waterfalls and rainbows?

by GriffithAdmin 21. October 2013 10:27

Waterfalls and rainbows?

Great Waterfall and rainbow

rainbow in Labyrinth CanyonThe monsoon season of late July and early August in Utah can create some of the best photo opportunities.














New Gates of Lodore Launch for 2014!

by emma 15. October 2013 09:35



New Gates of Lodore date for 2014

Gates of LodoreThe Gates of Lodore on the Green River is one of the most popular trips Sheri Griffith River Expeditions runs.  We have just added July 7th date to our 2014 Calendar. This means we have launches on June 8, 14, 19 and July 31.

This trip combines all the elements of a classic whitewater river trip: great hikes, exciting whitewater, beautiful beaches and colorful history. Take a journey into a spectacular wilderness.

Because we have so few trips through Gates of Lodore almost all our dates sellout quickly. Book your trip now!

End of the Government Shutdown...kind of.

by Sheri Griffith River Expeditions 14. October 2013 11:27

Government Shutdown and
Sheri Griffith River Expeditions:

We have had a lot of people asking about our trips and if we can still run them.   Sheri Griffith River Expeditions has only slightly been affected by the Government Shutdown as of right now.


There are still plenty of great things to do in Moab, other than Arches National Park and Canyonlands National Park. Check out www.discovermoab.com or www.visitutah.com for a list of alternate activities to do in the area.


book onlineWe would like to thank Utah’s Governor Herbert and Secretary of the Interior Jewell, for their work opening up the National Parks in Utah. You can read Co-Owner Arlo’s comments about the shutdown in the Salt Lake Tribune here.


We doubt the shutdown will last to next year. SO…..We are still booking lots of trips for 2014!  

New discounts for Rafting in 2014

by GriffithAdmin 14. October 2013 10:57

Pay in Full Discount

rafting discounts! NEW DISCOUNT:  If you pay your full multiday river trip fare at the time you book we will give you 5% off your trip cost. This discount can be combined with both the 2013 rates and returning guest discount. This could be a 20% savings! If you have already booked a trip for 2014 and want to pay the remaining balance we will still give you the book online5% Pay-In-Full discount. Just call or email Kristl at 800-332-2439 to make your payment.


*Remember if you reserve your spot before October 31st you will receive this year's price. This is a savings of over 5%. If you are a repeat guest you still receive your 10% off. This could be a savings of over $250!


Happy Guests Comments:

Everything on our trip was excellent, from calling to make reservations, payment ease, questions answered, the guides were awesome, informative, very knowledgeable and made the day that much more fun! Our guides were Amber and Tabitha and they were EXCELLENT! The best part of this trip was the RAPIDS and the guides made it that much more fun!!!!! HUGE THANK YOU TO AMBER AND TABITHA! I would go back and highly recommend SGE anytime to anyone! You will not be disappointed!

-Janette K. Chicago IL

October Activities at Sheri Griffith Expeditions

by Kristl 9. October 2013 06:44

Rich Practicing his Drive

Short days, colder nights and even some snow on the mountains...must be October in Moab.  We've been busy cleaning, repairing and putting away the rafting equipment here at Sheri Griffith Expeditions, but we have found some time to get out and play, too.  We still have beautiful weather for spending time on the water, in the canyons and on the golf course. 

Brenda took some time to explore Cataract Canyon, launching on the evening of September 30th so that she could beat the "shutdown".  She explored some side canyons and was excited to show us the pictures of the arrowhead she found (and left) there.

Kristl took her family and friends for a "Ducky Day" on the Daily Stretch of the Colorado River and had lots of fun playing in the sand and building sand castles with her kids.

Arlo took some time to kayak on the Colorado River for a day away from the computer and brochure planning.

Jose has taken some great hikes to area petroglyphs, and is planning some more fun excursions with his family.

Marshall and Nicole took their family on a Labyrinth Canyon excursion.

Rich took his family down Cataract Canyon.

Aaron hiked into Cataract Canyon and then rafted down from the Confluence.

Izzy is planning a Cataract Canyon or Labyrinth Canyon trip for next week.

Max and Tabitha have spent time in Pennsylvania with Tabitha's family, and are planning a trip to Costa Rica in November.

Stephanie is traveling abroad, visiting Italy, Sri Lanka and other destinations.

Christian and Rich

One activity that Brenda, Rich, Sara Jane and Christian are going to participate in this weekend is the Moab Regional Hospital Charity Golf Tournament.  The proceeds from the tournament benefit the hospital's Digital Mamography Services. Brenda's team may not be the best on the course, but they'll probably have the most fun!

Winning

by arlo tejada 7. October 2013 15:11

Wasatch MTN

Hello Everyone.

This should be the shortest update yet. I am just updating you on my treatment from last thursday (Oct 3rd)

For those that do not want to read more: I feel great after the last treatment.

Arlo in the InfusionThe rest of the story: I came up to Salt City on Wednesday Oct 2. The drive is starting to get to me even though the Leafs are starting to change. This makes the drive a little bit nicer. It is still 3:30 hours of me thinking to myself. Never a good idea when you are not sure how long you are going to live. I did not have anyone come up with me this time. My Mom flew in on Thursday Morning.

We had breakfast at the Park Restaurant before heading up to treatment. (that is my product placement for this update)

The Doctor was again very excited about how things have been going for Hodgkin's patients. He was also excited about the CT scan results.

My schedule for the future will be pretty set at every other thursday in SLC with CT tests every couple of times. This also runs into Halloween, Thanksgiving, and Christmas. Not to excited about that.

There was a little discussion on how fast we would need to move to the BMT at the end of treatment. This is something that has been brought up a lot lately. In my head and with friends. The PD1 might be too successful and this has really forced me to think about my next step.

The short answer is I do not know what I am really going to do.

I have not really thought about it a lot lately. But it is something I need to think about. I will save that for the next update….two weeks away.

And Yes I am still think of doing it...and still thinking of not doing it.

In an effort to keep this short. 5 days after the drug I feel great.

Arlo Sea KayakingHad a fancy dinner with my mom last night and we went very ritzy and stayed at Grand America hotel in SLC. (Hey if the drug company is paying for it why not?)

Otherwise my week was rather good. Lots of fun, including Moab Pride events, sea kayaking the river, last weekend up big cottonwood canyon with friends, and finishing the SGRE brochure. 

Very much feel like my rather amazing life is turning towards the even better, yeah I am going to say it. “I am winning!” Much Love!



Arlo Tejada

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

Cataract Canyon...Now with NEW RAPIDS!

by Sheri Griffith River Expeditions 7. October 2013 09:25

Cataract Canyon...Now with NEW RAPIDS!

 

Family Rafting Trips on the Colorado River

September’s record breaking rains and the shrinking of Lake Powell have combined to form some new rapids in Cataract Canyon. For about 10 years, Lake Powell has been at record lows. These low lake levels have allowed the Mighty Colorado River to reclaim some of its former rapids. This has given us the chance to run 5 “new” rapids including the very fun and almost mile long rapid of Water Hole.

Our Operations Manager, Brenda, was able to squeeze in a trip last week before the government shut down. She reported lots of new debris flows from the recent rains.

One of these mudslides created a brand new rapid! Here is Brenda’s description of the new unnamed rapid: “A brand new rockslide has come from the right-side of the canyon to narrow the channel below Water Hole Canyon. At the low water level I ran it at it is was not huge maybe a class 3. The start of the rapid has a classic “V” into some fun splashy waves. If you break through the “V” to the left there is a runnable hole. The hole is little smaller than the Little Delores hole on Westwater Canyon. This should be a really fun rapid at higher flows. YEAH new Rapids!”
Westwater Canyon Rafting on the Colorado River

 


Government Shut Down and Sheri Griffith Expeditions

by GriffithAdmin 1. October 2013 11:57
Moab Utah and the Shut down.
Sheri Griffith River Expeditions is not directly affected by the Government Shutdown. We can still run all our Westwater Canyon trips for the rest of the year. But we feel sorry for all those coming to our great town of Moab, Utah looking forward to seeing Canyonlands National Park and Arches National Park


Tags:

Colorado River Rafting | Westwater Canyon Rafting

All Good!

by arlo tejada 25. September 2013 11:54

All Good!

arlo!!!

Hello Everyone,

This will be a much quicker email from last weeks. And that is a good thing.

I went to SLC on Wednesday Sept 18th, to do another treatment and a CT scan. The CT scan was on Weds and the treatment would be on thursday.

The CT scan went fine except the nurse had to stick me twice. And on the second one she said "well I think it's in there." At this point my veins are rock hard and it seems to be very difficult to get to the obvious ones. The contrast that they give you beforehand is terrible and I had to start drinking it two hours before the 7pm test. Which meant drinking it on the drive up through twisty roads. Lucky for me I had a driving partner that liked to remind me "It's time to drink!" and "One more sip!" The other hard part is the IV contrast they give you while you are in the machine. The last two times I thought I was going to throw up afterward. It makes you feel like you just pissed your pants. This time was worse than anytime before. I did not throw up but felt terrible for a couple of hours.

Arlo And Alycia at huntsmanThe next day the we went in around 10. They take 12 vials of blood every time I go in these days. This time the nurse hit the vein on the first try. But that might be because my accompanying friend, Alycia, threatened the nurse. The nurse looked at each arm twice "to be real sure."

When I met with Dr. Halwani he was down right giddy. He said the response in Hodgkins patients has been doing really well over the study. Even Alycia commented on the doctors mood "Is he always like that?" He also said the CT scan showed no Pneumonia. He had to talk the drug company into keeping me on the study.(or at least that is what he told me.) Staying on the trial is obviously a very good thing. He said I most likely will take about 10 total treatment, but really it is just guess. I should not expect any really improvement until week 8.

Sadly the CT scan had not been transcribed by the radiologist by the time I saw Dr. H.

I went to infusion at around noon. I was there for about an hour. It went really smooth except for losing a game of Battleship to my friend. (I know can you believe she did not let me win?) That is how I wish every infusion went. How far it has come from 3 years ago, puking on the "Red one" of the ABVD chemo.

On the way out of the infusion center the coordinator gave me the CT scan report.

It took me a couple times of going over it but all the tumors seemed to have shrank!

family at huntsmant statuteThe largest tumor went from 3.3x1.3 cm to 1.9x0.07 cm. this is of course a great sign. Kind of wish I could have talked to Dr. H about it but it does give me a lot of hope. Of course the PET scan before the 4th treatment will be the most important. The tumors were not big but were very active on the last PET scan. After the treatment I had no reactions and felt very good. I even was able to have dinner with Dasch and Meg. Which was the first time since I had my worse scan in Feb of 2012 that I had seen them. It is kind of funny to reminisce about my last time in SLC fondly considering why I was up there and how hard some of that chemo was on me.

I still feel great. In fact I think I feel better than I have. But that might just be in my head, which really does not matter does it?

Ok that is all. I have another test on Thursday Oct 3rd and I will write again then. Hopefully it will be short.

Thank you all for your support and love.

Arlo Tejada

Tags:

Arlo's Cancer Story | Arlo's Cancer Story