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Up to SLC

by arlo tejada 18. January 2013 16:40

Here is an update of my week in Salt Lake City with my first set of Chemo.

Arlo TejadaOn Tuesday April 5th I moved into Dasch and Megan's downstairs apartment. The place is great for me with a big bathroom, kitchen and a dark bedroom.

I started the ICE treatment on the Wednesday at 2 pm. The chemo is Etoposide. I take this for all three chemo days. It only takes about 40 minutes to administer with the port. I get this at the same sweet doctor's offices that I did the first set of chemo. Nice lazy boys, dvd players and a library of magazines.

I felt great after this first day. No really issues. The port makes the process very fast and I don't really feel anything.

Thursday Day 2 Chemo was a bit more hectic. I had the Etoposide and then I had a new drug called Carboplatin along with some steroids and a lot of nausea medication. I ended up sitting next to a lady that could not have been older than 50. She was getting chemo for ovarian cancer that may help her live a year longer. She was very positive and up beat about everything. It was probably the sadness story I had ever heard and she told it like she was telling a funny story to a kid. She really gave me strength and made me very sad.

Arlo TejadaI then headed over to the hospital to get my "chemo back pack." There was a mix up on time and I had to wait 2 hours for the stuff to arrive. In the backpack is the nasty chemo called Ifosfamide. It was on a 24 hour pump shooting a little into my body at a time. This stuff came with its own spill kit.

The backpack was a pain in the ass. I knocked over a chair, dragged it across the room and generally abused it. I just keep forgetting that I was attached to something. Overall you probably can tell I really did not like the backpack thing.

Overall the evening was fine with little effect from the chemo. Maybe a bit more tired but no sickness.

Friday Day 3 Chemo was just the Etoposide and getting the backpack removed. The nurses decided to add some fluids and more medication because I was a little dehydrated.

Arlo TejadaFor the second day in a row I had an interesting and heartbreaking conversation. I shared the room this time with a 17 year old autistic getting treatment for Hodgkin's also. He is a senior in high school and will miss his graduation. He was only a little bummed about that, but was really excited to tell me about his gold medal in the Special Olympics with his basketball team.

After that treatment I went over to get my backpack off. They also changed my dress for my port. After all this I was feeling a little bit...loopy. Not all there. Luckily I did have a driver because I was in no condition to be behind the wheel.

By the time I got home I was not right. Head was spinning and a bit out of it. I went to bed early around 7.

This evening was one of the worst I can ever remember. It was a combination of floating and not knowing where I was and the world spinning. It reminded me of a concussion I once got and combining that with being almost blackout drunk. I ended up waking up ever hour to stumble to the bathroom. I'd sit on the toilet and try and figure out where I was. The whole time my body would feel like it was floating and I only had slight control of it. I would have to figure out where I was and then go back to sleep. I could go on for a while with this but let's just say it was a bad night.

The next morning Trina came over and I was basically talking in tongues. Which scared the hell out of her. She made me eat some and drink some which made me feel better.

I came more around as the day went on and was semi good when Brian Merrill, who is the CEO of Western River Expedition, came to check on me. He probably could have gotten any company secret out of me at the time instead he brought me dinner. The river community is really a nice tight knit group.

On Sunday I was better but not great. I was trying to keep drinking liquids but they just tasted terrible. From Friday evening to Monday morning I ate 1 banana, 2 granola bars and probably 40 crackers. And drank 2 gallons of water. Sunday evening I was pretty freaked out that I was never going to be able to eat again. I thought I was over the hump and tried some yogurt....this turned out like that tequila shot at 1 am. Coming right back up.

On Sunday I also started my Neupogen shots which I will have to take for 8 days straight. These are to boost my white blood cell count. My temperature also rose to 100.6 which is just a bit over the worry level. Trina ended up calling the doctor. Dr. Prystas thought it was in normal ranges for having so much chemo in me.

Monday was much better. Dasch cooked me bacon and I knew I was going to eat again.

I ended up going to the doctor office on Monday for what was supposed to be just a blood check. The nurses decided to give me 2 big saline bags and some medication for combating my dehydration. This had more to do with my lack of eating than my lack of drinking water. I walked out of the doctors office a new man. I felt great. I talked Dave my driver into heading down to Albertos and ate a giant burrito.

Since then I have felt better every day. I was able to go to an MLS soccer game where I was honored as "Heroes Among Us" for Sheri Griffith Expeditions work in the Moab Community. I also was able to attend a minor league baseball game.

I did have one minor/major setback on Friday the 15th. I was eating lunch at the Himalayan Kitchen (which is selling Arlo wristbands) in downtown Salt Lake with friends when I broke out into uncontrollable shivers. I could not stay warm. My friends took me home and checked my temperature. It had spike to 101.5. They call the doctor who ordered a prescription for antibiotics. Before going to get the antibiotics they checked my temperature again and it was at 102.3, way to high. They went to pharamacy with the plan if I was still high when they got back we would go to the emergency room. It took them 20 minutes to get back and I was already feeling better. My temp had dropped to 100.9. They continued to monitor me throughout the evening and my condition improved. The whole event took a little less than two hours. It was really a scary experience that I have never had before. I could be feeling perfectly fine one minute and just drop of the map the next.

Other than the first weekend I'm feeling really good. I have not lost my hair yet and my energy is still ok, though my weight is down about 20 lbs. I go in tomorrow for the next round of chemo. And then I will get lots of test done. The bone marrow transplant should start 3 weeks after Friday.

 

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Arlo's Cancer Story

Thank you!

by arlo tejada 18. January 2013 16:38

 Arlo in a Sea KayakThank you, Everyone, for your tremendous support any donation would be much appreciated. For those that are on facebook there is an Arlo fundraising events page that lines out all the different events that are going to help raise money. Cancer Free Arlo

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Arlo's Cancer Story

Insurance and such

by arlo tejada 18. January 2013 16:36

Arlo Tejada and his MomInsurance and fundraising: We have had a lot of questions about fundraising and insurance for Arlo. This is his biggest issue moving forward because we whole heartily that he will be physically fine. For those that would like to donate we have signed up with a fundraising group: National Foundation for Transplants. For more information or donations go to http://www.transplants.org/donate/arlotejada The donation process can be a bit tricky and you NEED TO BE CAREFUL to specify ARLO and to see his photo. This donation is tax deductible for you and tax free for him.


He has terrible insurance and they don't cover Utah any more, so any changes he tries to make will void the plan. They say that they can't upgrade the policy because it's grandfathered in. Any changes will void the policy. They also told him they can't send a written letter because they only do it verbally. He can't get any other insurance because of my "pre-existing" condition. His final hope for an insurance solution is to qualify for Medicaid.

Arlo, Congressman Matheson and Brian MerrialThe cost for the BMT alone is going to be around $140K+. The hospital does not offer payment plans for this treatment (the only one that they don't). This does not include the $10K per PET/CT test, of which he has had 3 already and at least 2 more coming. The insurance does cover 80% of the chemo and the Radiation. It doesn't cover the BEAM but does cover the ICE treatments. Either way it's still about $5,000 he has to pay .


Tags:

Arlo's Cancer Story

Not so Good News

by arlo tejada 18. January 2013 16:32

Here is an update on my current condition and what is in store for me in the next couple of months:

Arlo TejadaI had the "last" of my tests done at the end of February. The tests showed that I still have "activity" in my left arm pit and middle of my chest. I had a bad feeling about this since my left lymph in my arm pit swelled after the finally chemo and has been painful since. The activity or brightness of the lymphs shrank a lot since my last test, except for the one in my left arm pit which is bigger.

This left me with two options: radiation or a bone marrow transplant. I met with specialist from both radiation and the bone marrow department over the last month. Because my symptoms (itching, weight loss, and night sweats) have come back so fast all the doctors thought the bone marrow transplant was the best way to go.

I decided to go with the bone marrow transplant option for my follow up treatment. This was not an easy decision because it very invasive and really expensive. It looks like it is the best option for me. It has the best "quality" of life options after the initial treatments. The ration option would have been "full Nodal" which is basically radiation everywhere. There would have been a very good chance of other issues down the line. There is less likelihood of far ranging issues with the BMT, though putting that much toxin in your body can still have side effects.

The Details: The timeline is still a little fuzzy but here is what my next 3 months or so looks like. I had surgery on March 30th to put in a 3 valve port next to my heart. It looks like tentacles coming out of my chest. It's not terribly painful, just a little uncomfortable.

I will start the first round of new chemo on Wednesday, April 6th. This new round is called ICE. It is a fairly strong dose of Chemo. It will last three days. The first day will be about 3 hours long. The second day is 4-6 hours long with them giving me a pack of chemo that will enter my body for 24hours. The last day is 3 hours long. Then I have two weeks off. They then do another round of ICE. After two weeks I will have to get another set of PET and CT scans and probably a bone marrow biopsy. They are looking for some sort of remission. If this happens than we move to the prep for stem cell collection.

With the stem cell collection, the doctors inject me with a variety of drugs to help boost my stem cell production and increase the number of stem cells in the blood. This takes 10-14 days. After there are enough stems cells they will hook me up to a machine that cycles out my blood, collects the stem cells and cycles the blood back in to my body. This can take several days to get enough stem cells. They want to collect double the normal amount in case I have to do a second BMT.

A day or so after that I will start the MAJOR chemo process. This is called BEAM. They basically nuke my body. This takes 6 days full days in the hospital. After that I get a day off, after which they put the stem cells back into my body. For the next 3-4 weeks I have to be in the hospital as my white blood cells and bone marrow recover.

I will have to get another PET and CT scan after that. If the first round has not done the trick they will wait 4 weeks and repeat the BEAM and Stem cell transplant process The doctors will also radiate my large lymph under my arm as a precaution.


It's going to be a long process but I'm very happy to start and get done with this next phase. Thank you for your support and emails. 

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The Good, The Bad and the Ugly

by arlo tejada 18. January 2013 16:22
The Good, The Bad and The Ugly:

After 6 moths of chemo with ups and downs throughout here is the "good the bad and the ugly" of my cancer treatment. When I was much younger I received a guest complaint/ improvement letter that started out like this: "There were only 2 good items and lots of ugly" I was one of the good, so I think it stuck with me and it seems appropriate now.

  • The good/great if that is possible

    FRIENDS and FAMILY: by far the best part of this experience has been the reconnecting with close friends and others that I have not talked to in a while. I really could go on for a longtime about this. I want everyone to know that your thoughts, prayers and kind words are amazingly reassuring even if I did not get a chance to respond. I had several people tell me during this process that they were happy I was alive and how much I meant to them/their families/friends. Nothing is quite as humbling.
  • Research: The more information I received the better I felt and more uncomfortable I was.
  • Places to Stay in SLC with Friends: This was a wonderful chance to meet up with different friends in SLC.
  • Dinners: A pair of friends organized dinners the 4 nights after Chemo. This turned out to be a great idea. This was a real treat. I was really lucky to have so many people come over and fix dinner for me. The best part of this experience was to sit down with everyone and chat which I don't get to do very often. It was also wonderful not to have to worry about cooking or cleaning in my crappy state.
  • Being alive. Not something I think about but I would have to say it's something I am appreciative of.
  • The doctor's office, Dr. Prystas, Nurse Kathy, Receptionist Janet and everyone in Wasatch Hematology. Also Rebecca Love who first set up everything for me and Dr. Sharma who did the biopsy. Everyone I have met in this health care over load has been amazing. I really can't say enough about the doctor's Office. I mean they had lazy boy chairs, DVD's and more magazines than the library. It was the perfect place to get poisoned. The staff was a pure joy. All the ladies were friendly, fun and professional. They really made me feel comfortable.
  • Losing 40 lbs in 4 months
  • Others with/surviving cancer: Two very important people in my life, Sheri Griffith and Dave Focardi, had cancer during this last decade and have had full recoveries. Talking to them at the start of this journey was amazingly calming and helpful. Sheri had stacks and stacks of research on Hodgkin's for me and just plain good advice. Dave is a former SGE river guide and for years was my personal river rafting trainer. We compared a variety of stories and very interesting anecdotes from each of our experiences. My Mom and I also have had a bonding experience in having to go through this together.
  • Massive Email lists: In the beginning it was a bit overwhelming: all the phone calls, emails, text and such. I really wanted to talk to everyone and reassure them but it was just too much at the time and too much pressure. I was able to lessen some of the pressure by sending one mass email for my updates, and my friends and family were all fine with my solution.
  • Facebook: This is going to sound odd to some of you but when I was sitting in the chemo treatments, feeling like crap and I keep getting Facebook updates on my phone that said things like "You've got this!" and "Good Luck Brother" from friends and family some of which I have not seen in years. It really made the entire process so much easier.
  • Football Season: Watched more football with the sun shining than I every have in my life and not a hint of regret.
  • 3D IMAX Movies: Going to SLC every other week had to have some benefits.
  • My across the street neighbor who I don't know really well, started bringing me lunches and breakfast when she learned I had cancer.
  • Every other Weekend: I did get a chance to have fun on the "off" weekend with trips to Lake Powell, one day trip in Westwater and New York for my Cousin wedding.
  • The Bad

  • Drugs, Drugs and more drugs: I have a hard time taking an aspirin much less being hooked up for two hours have "drugs" or poison flow through my body.
  • Pills and More Pills: Though I know the Vitamins really helped my treatment, 23 different pills at a time is A LOT. I'm not 90. From vitamin E to nausea medication to some crazy pills the acupuncturist gave me, it might have been over kill…or it really worked.
  • The drive to Salt Lake: 3 and-a-half hours of waiting for hell. Plus the traffic in Provo is a joke!
  • Gaining 30 pounds back in 6 months.
  • Gas stations in Wellington, Utah. I think I will always feel sick when I walk in there. Plus that bathroom is gross.
  • Overdue housework: I thought I was just being lazy when I didn't get much work done last spring on the year but it turns out it was actually just the cancer. Maybe I'm still making up excuses.
  • Sitting on the couch: this might contradict the football part but it will be nice to get active again and enjoy this Utah sunshine and of course the rivers.
  • The Ugly

  • Insurance dealings: I have no idea how this all works. Some things are covered, some things are not. It's like they throw darts at a board. I'm very glad my dad talked me into insurance 5 years ago. I'm still trying to figure out the bills and will be for a while. I can't imagine being more sick and dealing with insurance companies and bills.
  • Needles: Never really a problem with these before but after being stabbed two or three times a week for 6 months I'm over it.
  • WAY too long off the river: I did get one trip in the October but I REALLY can't wait for some sand, whitewater, and canyons to float.
  • Crazy Emotions: I had crazy emotional roller coaster ride the day of and after the treatment. It's hard to explain but little thanks and such made me happier than normal and minor set backs sent me into huge spirals. All things I'm really not used to.
  • Being WAY behind at work: Though this just does not seem as important it is still a major part of who I am.
  • Tests: This sucks both out of the wallet and the process. The most expensive part of the whole experience were the tests, which just does not seem right.
  • That Utah football game I went to….47-7…..WOW. (the U lost)

So after all that did I learn something? I think I did, I just hope it makes me a better person. I know I'm appreciative of everything! After I wrote this I had a very nice response from a friend. I wish I could take credit for it but I think it is right on point. "You have learned to think about which path to take in life. The river is my favorite metaphor because it symbolizes life so well. We have no control as to what will happen. We can only aim and pray. Sometimes we can row like hell and some times we just hit it wrong. Keep rowing like hell."

If anyone wants to talk about your experiences or mine I'm more than happy to talk. I always love a "good" conversation. Don't be afraid to call me 800-322-2439 or email me at atejada@griffithexp.com

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Back Story

by arlo tejada 13. January 2013 14:34

Back Story:Arlo In Westwater Canyon 2010 For the most part, I am a pretty healthy guy, but around June in 2010, I noticed some lumps on my left shoulder. I did not think too much about it and went on without much concern. About a month later, as the rafting season slowed a bit, I made an appointment with a local doctor. Between making and going to the appointment, I got really sick with Flu like symptoms: no energy and bed sweats, but without the fever or stomach issues. It seemed mono-like. I was feeling better when I met with the doctor, but she was very concerned with the lumps and sent me to get a chest x-ray and blood tests. The blood came back fine though a little anemic (lack of Iron) and the chest X-ray showed enlarged lymph nodes in my chest.

My doctor then sent me to Salt Lake City to get a biopsy of the lumps. Two weeks later I got the phone call no one wants . I had Classical Hodgkin Lymphoma, which used to be called Hodgkin's Disease. It's the same thing hockey player Mario Lemieux had, so guess my hockey career is over

Hodgkins is the more rare form of Lymphoma, but is also the more treatable kind. It is a very common cancer in people in my age group. It has an over 90% cure rate.

In late August I went back to SLC to get the final testing done. PET scan(tracks a radioactive sugar throughout your body to see where the cancer is at) CAT scan, Chest xray, blood work, breathing tests (side effect of my chemo might be some lung scaring) and heart tests.

I met with my Oncology doctor, Dr. Prystas, who came highly recommend from a very good friend. We went over all the different elements, treatments and timetables. With help from friends, I had done a fair amount of research and had a pretty good idea of what the treatments would look like and had resigned myself to that I would at least have to do Chemo. I was very excited at the time that I did not have to do Radiation or Surgery. Things have since changed and I will likely have to have radiation or a bone marrow transplant.

I was diagnosed in stage 3b. That sounds worse then it is. It just means cancer was found in three sections of my body on both sides of the diaphragm. It is still all in the lymph system though, which is good. I did not have what they call "bulky" or big lymph's. My blood work showed that my body was doing a decent job of fighting the cancer. This I attribute to recommendations from cancer surviving friends that helped change my diet right away: NO alcohol, and a lot more fresh fruits and vegetables along with a new regimen of vitamins.

I started my chemo in late August. It was a very light and effective dose. I learned that Chemo is just a general term and that there are thousands of different types, dosages and regimens. I was on a "pretty easy" one because of the curableness of the cancer I have. The type of Chemo is ABVD, with each letter standing for some drug I could not remember even if I wrote it down.

The treatments took about 2 hours each time, and were administered in the Doctor's Office, not the hospital. The room is SWEET with a lazy boy and TV and DVDS, it's like being in a living room. The whole staff is wonderful and really nice.

Tags:

Arlo's Cancer Story

Dynamic Yampa River

by GriffithAdmin 7. January 2013 11:45
The Canyons of the West are beautiful, full of life and almost seem to be timeless.  The towering walls of stone all around the rivers that formed these canyons bear silent witness to the powers of water, wind and time.  Sometimes, though, Mother Nature likes to throw a monkey wrench into things.

This August, we received word that there was a rock fall in the Yampa River Canyon, just above Warm Springs Rapid.  Here are some of the pictures that the National Park Service sent us:
This new boulder may prove to be a bit of a challenge when we see the river at higher flows in May and June.  The average level of the Yampa River in May and June is about 10,000 to 16,000 cfs.















The river was flowing at about 150 cfs when these pictures were taken.  The average level of the Yampa River in May and June is about 10,000 to 16,000 cfs.

Our guides are excited to see what this new rockfall will make the river look like during the 2013 river rafting season.

Common Questions

by GriffithAdmin 6. January 2013 11:55

Here are some questions we recently received from a guest going on a Westwater Canyon Trip.

  1. We would prefer paddleboats, but what are the qualifications?
  • As long as they can hold a paddle, there are no qualifications to be in the paddleboat. The guide will teach everyone on the boat how to paddle and what to expect. We may not allow smaller children on the paddleboat depending on water levels.
  1. How long is the ride from Moab to the ranger station put in, what type vehicle is used for transportation?
  • The drive to the Westwater Ranger station is about 1 and half hours long. We use 15 passenger vans and air conditioned shuttle buses. (Not school buses but motor coaches.)
  1. How long are we on the river, where is the lunch stop and is the swimming or hiking there?
  • We launch around 9am and take off the river around 3:30-4:00pm. The lunch stop varies on time of year. If the water is high we will lunch farther down stream because the river is moving faster. This is also true with hiking. When the water is low we do not have time for many hikes. There is always time for swimming!
  1. How long is the ride from take out point to Moab?
  • The ride back is almost the same length as the ride there.
  1. Are all your guides licensed?
  • All our guides are licensed by the state of Utah. They all have food handlers, CPR and Wilderness First Aid.
  1. Can you handle special diets or is it best to bring separate food (gluten free bread or 100% rye flour bread for fructose intolerance)?
  • We can handle a variety of diets. Gluten free is very common for us and is not a problem. We just need to know beforehand.
  1. We are staying at a hotel in town can you pick us up?
  • We can pick up from most hotels in town and from Red Cliffs Lodge and Sorrel River Ranch on our all our Westwater Canyon Trips.

Call Kristl at 800-332-2439 or email her at whitewater@griffithexp.com for information on one day Westwater Canyon trips.

Luxury River Trips

by GriffithAdmin 27. October 2012 06:01
The Green River!
I LOVE telling people all about our rafting trips. I REALLY love telling people about our Expeditions in Luxury rafting trips.  Why?  Well first, because we are the ONLY company offering this kind of comfort on these stretches of river. Secondly, it is fun to hear some of the responses:
"Really?  They do everything for me?"
or 
"You actually bring a Chef?" 
or
"Linen Clad Tables? Wow!" 
The answer to all of these questions?  A big YES! 
Here is a chart that details some of the differences between our standard rafting trips and our Expeditions in Luxury:
  Standard Rafting Trip Luxury Rafting Trip
Pre-Trip Loding Guest's Resposibility Deluxe Accommodations at the Best Western Canyonlands Inn Included.
Number of Guides/Staff on Each Trip 1 Guide per Every Five Guests
1 Guide per Every Three Guests, plus Camp Staff to Set-Up and Take Down Camp.
Chairs Comfortable Standard Camp Chairs Deluxe "Director's Chair" Camp Chairs.
Camping Equipment Cozy Sleeping Bag, 2" Paco Pad and Roomy Tent.  Set Up By Guests. Area Rug, Comfortable Cot, Cozy Sleeping Bag, Sheet, Pillow, Pillowcase, Handtowel, Washcloth, Small Table, Small Light, Spacious (6'6" tall) Tent.  Set Up By Camp Crew.
Meals Fresh and Delicious Meals Prepared by the Guides.  Served Buffet-Style Deluxe Meals, Prepared Riverside by Our Talented River Chef.  Served at Linen Covered Tables with Matching Wine.
Beverages Water, Juice, Gatorade, Iced Tea, Lemonade, Soda Water, Juice, Gatorade, Iced Tea, Lemonade, Soda, Beer, Wine (with Dinner)
Group Size 8 to 25 Guests 6 to 16 Guests
Post-Trip Lodging Guest's Resposibility Deluxe Accommodations at the Best Western Canyonlands Inn Included.
Finally, the REAL reason I love sending people out on one of our Expeditions in Luxury (or any of our rafting trips!): I know that they are going to have an outstanding experience in one of the most beautiful places in the world with some of the most amazing people I have ever met.  I know that our guides and staff are always going to provide the highest quality of service and that my guests are going to go home from their vacation with a renewed spirit and a new-found love of the river and her canyons.


If you would like more information about our Expeditions in Luxury, you can either click here, or you can call and talk to me (Kristl) at 800-332-2439.