Adventure with a Touch of Class!

Call us today!

800-332-2439

Huntsman...huh?

by arlo tejada 16. September 2013 15:10

Huntsman Cancer Center...Huh?

arlos family
Hello Everyone, The last month has been very stressful and more of the same. Nothing ever seems to go the way it is supposed for me anymore. Just when things start going well, something always gets messed up.

On Aug 15th I went to SLC to do another PET scan. This one was at the Huntsman Center. They do this test a little different. They shoot me up with the radioactive sugar like normal but instead of the normal 50-minute wait they do 90. Which is very boring and they do not like you to read or move. Plus the test itself is 35 minutes long in the “tube.” Supposedly this test is more accurate.

The report on the PET scan came back bad…and not so bad. There has been only a little spreading or growing of the tumors. They are basically the same size which is good since I have not had treatment in 3 months. But the activity or brightness has gone WAY up. The main tumor at the top of my stomach went from 11 SUV to 22.34 SUV. The other larger tumor went from 6 to 18 but both are about the same size as before.

arlo and JoseOn Aug 16th I talked to Dr. Halwani, who is running the clinical trial at the Huntsman Center in Salt Lake. Here we setup a start date of Thursday the 22.

I am trying to keep things normal in my overall life. I have stopped going to work but still working from home.

I am also looking at potentially hiring an assistant that may replace me in the future. This is a lot harder than I would have thought. I have to make a list of what I do, then I have to go through and fill in the details. I realized that no one else in the company has a clue what I do. This task is incredibly frustrating and actually very sad. Do not like the idea of not being here. But I guess that is to be expected.

The big issue for the week was I got sick on Wednesday August 21st. I drove to Salt lake that day. It was a miserable drive. I was very sick with flu like symptoms. I really should have called the dr. and the hospital but I was very worried about getting kick out of the trial or waiting longer on getting treatment. It has been months since my last treatment and I have started to show new symptoms such as night sweets and itching. Obviously this was very worrying to me. (somewhat of an understatement.)

I went into my appointment the next day feeling a little better. I thought I would be able to fake it. I was not. They were rather upset that I did not call and sent me home. Along with some antibiotics. I spent the next two days in bed in SLC. I was in bad shape. I went back to Moab on Saturday not feeling great but better. By Sunday I was a bit better. And on Monday I was…normalish. Still sick but not in the body.

I was pretty good on Tuesday Aug 27 or so I thought. I talked the doctor into giving me the drug that day. The best part of the day was the free set of Skull Candy headphones given to all new patients. That is about the only good thing that has happened to me at the Huntsman Cancer Institute. I will go over this more later.

I had to sign new consent forms because they have found new side effects for the drug in the past week. One of the new side effects came from animal testing. Which means this drug is so new they are still testing it in animals…and still finding side effects.

arlo!The infusion center is amazing. Huge room with great views of the Salt Lake Valley. Very comfortable and fairly private chairs with individual tvs. I can not stress how much money this place must get, really seems like money is not an issue. The service is the issue.

I came into the Infusion room around 1:30. I was setup with a nurse and a helper. The nurses seem to be taking care of about 8 people at once. Which I thought was a lot. But it was hard to tell.

I was hooked up fairly quickly and got under way. the quote of the day came from my nurse who said “Wow, this does not have name? It’s just numbers. Never seen that before.” Very reassuring.

The infusion took about and hour. The big issue was that I then had to wait 3 hours and get my blood taken to see how much of the drug was still in my body. Here is the rub. The blood tests are not to see how I am doing it is strictly for the drug company’s research.

At around 430 my nurse left without warning. The only way I know this is because I could see her from out of my window at the bus stop below.

At 5:30 another nurse came by to do the blood draw. I was not feeling great so I asked her to check my vitals. I would have thought that would be the routine but I guess it is not. Temp was a little high but nothing to worry about she said.

I went back to where I was staying. About a 40-minute drive away. By the time I got there I did not feel great at all. I had dinner with my friends and sent out texts to my main contact that if I called in the middle of the night, acting weird to call Jon and Gretchen, the friends I was staying with.

On my way to bed I asked Jon for a thermometer to have at the side of the bed in case. When he gave it to me he said we should check it. It came out to 101. We got another thermometer and that one came out to 103. At this point we called the emergency number the clinical nurses gave me. The doctor I spoke to told me to go to the ER. Preferable the one next to the huntsman.

We went to the U of U ER. I actually did not have to wait. They got me in a room right away. We spent about 3 hours there, mostly playing board games with Jon on Gretchen’s Iphone. They finally decided that I would be admitted to the BMT ward of the Huntsman.

This is a very similar experience to getting admitted to the LDS BMT ward for an infected line years ago. But the rooms at the Huntsman are enormous compared to LDS.

arlos family at weddingAfter being admitted I met with the night doctor. She said I would probably be out around noon the next day. This was great news to me.

The problem was no one talked to Dr. Halwani, even though I told them to call him and his nurse Mary. This is a trial drug and normal treatment might not be correct because of that.

After 4 people told me I would be released, Mary came and told me she doubted I would be there less than 3 days.

Even after I was told that several of the nurses told me I would be released soon. The communication was terrible.

My sister flew in the next morning. And my dad and brother came up on Saturday. We played cards and it really was not to bad.

I also had lots of visitors. Including my favorite nurse from LDS hospital. And several of my friends stopped by to watch college football. The room was kind of like a hotel room more than a hospital.

The room was not only nice. The whole floor was great. With an outdoor patio and walkway. I keep thinking how hard it will be to go back to the tiny LDS hospital rooms….that is until I think about IV’s changes.

The IV the ER nurses put in my vein was right on my elbow and very uncomfortable. As soon as I was moved to the Huntsman I asked for them to redo it and put it in a different location. They basically refused. Turns out there was a reason for this. They are really bad at IV lines.

They required a LOT of blood during the first two days. And none of it could come through the IV. Which required them to poke me a lot. I have never really had issues with anyone finding a vein. Especially just for a blood draws. But for some reason it was a huge deal here. Not a single time did they get the vein on the first try. Which for me is very rare.

After four days they decided to remove the IV that the ER put in and try the other side. It took three different nurses to do it. Again unheard of in the 3 years I have been spending time in hospitals. The second time they thought they had it in and started the antibiotics. My arm stared to swell up and get really stiff. My arm two weeks later is still slightly painful to bend.

The last IV I got they put it in my wrist. Blood shot everywhere. Then the nurse did not clean up the arm afterward and just slapped the tape on over the blood. Then left, with my other IV still in! About 25 minutes later another nurse came by and took out the first IV. At this point I had my mom call customer service. The head nurse came in a short time later and redressed the IV, Apologizing the whole time. Here is the “funny” part. The last IV was in for 2 days and was never used.

Enough about the service at Huntsman. I will just say money does not always buy quality.

In total I was in the hospital a week. I had a lot of tests run. Including several that I was never told about. A guy in a wheel chair would just show and tell me “I am supposed to take you to get a blah blah scan.” No warning from a nursed or doc. Yes very bad communication.

Dr. Halwani visited me several times. He told me I was going to be in the hospital at least two maybe three weeks. I thought that was ridiculous. I also told him I was leaving for my brothers wedding in two weeks no matter what.

It turns out I had pneumonia. Probably from being sick before and the infusion extended the issue. No one else has ever had a reaction after the first infusion on this drug. So that is a good sign. Though the pneumonia could be related to the cancer itself.

I have been taking it real easy since. The Dr. told me if I have another reaction they will most likely have to kick me off the study.

That would probably be a death sentence.

Since I have been home I have felt pretty good physically. Though I have not really been doing much. Not being real physically active and avoiding anyone that might be sick for the most part.

arlo reading weddingMy highlight of the year if not longer was being the minister for my brother's wedding last saturday sep 14. I was SO nervous I was worried I would cry the whole time. One of the first things I did when I got the bad scan in April was call my brother and sister in law and told them to final set a date! They had been engaged about a year at that point. And if anyone knows Obe and Natalie they could have gone for ever without setting a date. The wedding of course was beautiful and I am very happy I was able to be apart of it.

I go back for another CT scan on Wednesday Sep 18th. And then I have treatment on Thursday. I really hope everything goes alright.

I am pretty excited to see the CT scan and I hope to see some progress but the doctor tells me not to get my hopes up. Though there was a person on the study with a Hodgkin’s that had full remission at 8 weeks. Hard not to get my hopes up. I feel great. Thank you all for your support.
Arlo Tejada

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

Gearing Down and Gearing Up

by Kristl 2. September 2013 09:27

Yampa River

Here at Sheri Griffith River Expeditions we are starting to gear down from the height of our 2013 season, just in time to start gearing up for the 2014 rafting season.  We loved meeting new friends and re-connecting with old friends as we traversed the canyons we call home. We've already received reservations for the 2014 season, and it is starting to look like a great rafting seaon! 

As part of our "gearing up" for the 2014 season, we are offering a special September special on all of our rafting trips!  If you've been following us for a few years, you know that we always offer our "Next Year's Dates at This Year's Rates" until October 31st, but this year we are offering a special incentive.  If you make your reservation during the month of September and pay for your rafting trip in full, we will give you an additional 5% discount!  This discount works in addition to our group discounts and our return guest discounts, so you could save a lot of extra money!


Call or email Kristl for more details! (800) 332-2439Gates of Lodore


If you've ever wanted to see Cataract Canyon, the Yampa River, the Gates of Lodore or any of the other beautful canyons that we call home, this is the time to start planning!  We offer all-inclusive rafting excursions, so no hidden rental fees and no extra transportation fees will be added on to your reservation.

Another Great Review from Westwater Canyon

by GriffithAdmin 20. August 2013 15:50

“Indiana Jones would be jealous”
Read the review on TripAdvisor about one of recent guests trip down Westwater Canyon.


It all happens for a reason?

by arlo tejada 13. August 2013 11:24
It all happens for a Reason

Tetons
What a crazy couple of weeks I have had. Lots of ups and downs. Or maybe it is lots of downs….then it has been ups. In the end I feel it will all work out for the best.

Two weeks ago I was as sad as I have been in a long long time.

Last week I was as happy as I have been in even longer time.

Here are highlights:

    • I am doing the SLC study and NOT going to be inNYC Now
    • The drug is PD1. (Which is short for something.All I remember is the D is for Death) 
    • It helps boost my immune system and makes the Cancer more visible to my immune system. 
    • pretreatment tests: Bone Marrow Biopsy, PET, CT, Blood, STD’s etc.
    • Day 1 is about 4 hours long. Then blood test day 2.
    • Once a week test for 22 days. ·
    • Then the drug will be about 2-3 hours every other week.
    • Drug company will pay for Room and board and most things in this study. 
    • I can stay at home for the most part. 
    • SLC is now my kind of commute

Little side effects. For the Details: No Plan, No hope, lots of depression.

After sending my update on Thursday I start to get really bummed about my whole situation. I had a BBQ with friends and family on Friday and I really did not want to really talk to anyone. Kind of a buzz kill (not something I am used.)

I woke up Saturday totally depressed.

I had only a couple weeks of my life left, as I know it. And I am stressing about what is coming next. And what to pack and such….

I even went to a going away party Saturday night. I tried my best to put on my happy face…but all I could think about was this was most like last time I would see these friends. And it had nothing to do with them coming back to moab.

When I had the plan to live in NYC the plan looked very straightforward with lots of fun activities planned on the way to NYC.

NOW…It looked like I would be in one meeting/test/exam to the next to then be sick for the rest of my “life.” (that is something I do not even want to really thing about)

I sent a message to my friend Jen (who had planning on being my road tripping partner across country) about my rough day and feelings. She sent back that we should still do a small trip from SLC to Jackson Hole or glacier national park. After thinking about for a little bit I realized this could work.

My mood has been better ever since. (more on this later) I went to Salt Lake City on Monday to see about doing a new trial at the huntsman cancer center. This was a study I wanted to do at the beginning of July but it had filled up at the time. It was one of the firstthings I thought of when I got the “bad” news about the study in New York.

Huntsman Center…Overrated.

The Huntsman has this amazing reputation. Which is totally wrong. This is the worse setup facility I have ever dealt with. Including the lack of communication at the LDS bone marrow clinic oh so long a go.

I wrote a little about this in the last update. There is a lot of miscommunication and misunderstanding at this facility. I am curious if that is because it is a university hospital.

First off the parking is horrendous and there are streets going every which way. (UofU is very poorly planned.) I even got a ticket for parking in the wrong section.

You walk into this incredible looking building on the side of the hill over looking the Salt Lake Valley. Seems like a good start right? Then the Security guard is at the desk playing on his Ipad and does not even look up as people come in and out. No real direction of where to go. So we have to find the elevators. (very much not MD Anderson. )

The floors have clinic numbers on them. 2b. no indication what clinic it is. (2b is the Hodgkin’s clinic. 2d I think is breast cancer.) How the hell am I supposed to know that? but there are other floors that are also poorly marked.

So I look on my phone to find the one email I received.

It says “here is the consent form you will have to sign” with a couple of attachments. No this is where you should meet, park, go etc.

The person, Debbie, that sent the email to me did have an office number in her signature. So we thought, well that is where we are supposed to go. So we went to her office. After walking through tons of cubicles to get to the office. (poorly marked office numberalso.) Her assistant then took us to go meet her.

She put us in a waiting room for 20 minutes. While in the waiting room I got a phone call from the dr.’s nurse who was wondering if we where going to show up. We were at the wrong waiting room.

Then we were taken to the back to sign consent forms. When they started to do the blood work the nurse asked for my wristband. What wristband? How did you get back here with out a wristband or registering?  I don’t know. I think that is a great example of the poor organization overall.

It might seem odd to you that I am laying it on thick for how poor the huntsman setup is and yet I still choose to go with them. It is frustrating at first when a hospital is poorly setup but I am not there for the organization, I am there for the treatment and what can be my cure. It does concern me that things might get dropped and I probably will not get as many reminder phone calls. Hell they are the only facility I have dealt with that can not put my records and tests up online.

Other than the runaround my mom experienced. The Staff was incredible. Debbie turned out to be a very good resource and has helped us a lot already.

Dr. Halwani was really great also. He really laid out the differences between the two different trials I am looking at. He also drew us pictures. It was like I was in biology class again. We spent over an hour with him.

There were a couple of things that really sold me on this clinic. One was the huge recommendation from Dr. Houda at the BMT clinic. He really had high praise for dr. Halwani and this drug. I have always very highly of him since my heart clot issue.

This study also has lots more financial help. Not a limiting factor but it really helps. With Medicaid, a more liberal drug company and being in SLC all those add up.

The drug itself has very few side efforts. It does not make people sick. They did have 3 deaths from inflamed lungs, very early on. (I guess that is worse than being sick) There are also some potential issues with liver, and kidneys that they will want to monitor. Overall it is a minor amount.

The schedule seems to be much looser.

The plan would be to start treatment on Aug 12 or 13. I am still waiting to do the pet scan. Once that is complete I will move right to the treatment.

The treatment schedule is on day one: 4-6 hours of infusion and monitoring. Day 2 they test the levels of the drug in my body. Then they check again on Day 8, 15,22. On day 28 if everything is going well I will be start doing the drug every other week for about 2 hours. With the next day, blood work on the amounts of the drug still in my body.

There is not really a time frame. They do not expect anything until week 8. That would also be the first set of Pet scan tests.

I can leave the tests at any time but the drug company is obligated to pay for the drug for at least 2 years.

By the end of the meetings I knew I was going with this trial. I hope I choose this for the drugs affect and not to save another trip to NYC. This just happened to give me another day on my road trip.

I did have to do a Bone Marrow Biopsy. Which requires a giant needle to be driven into my lower back/hip to get bone marrow. It is not terrible but it is not fun and I was sore until…well I am still sore. I then they told me, I could not swim for 48-72 hours…Which I did break.

I also had to drive all the way to Riverton to do a CT scan. So it takes about 35-40 minutes to drive to Riverton from UofU and the scantook 10 minutes. Then I had to drive back. So the plan is tomorrow or Tuesday to drive up to SLC if the insurance/drug company issue is worked out and do the pet scan then probably start the treatment right after that. So Thursday or Friday? I think they want to do it on a Monday or Tuesday. We shall see. (feel like I use that answer a lot. )

In case you cannot tell the reason I am so late with this update is because I had a wonderful time on my road trip. Which included great hikes in Grand Teton, Yellowstone, and hanging/floating the river with an old friend in Bozeman Montana.

On one of our amazing 5 mile hikes (that Tony Dehann suggested) I started thinking to myself. How can I have cancer? I feel great! I felt great the whole time. Sometimes I just do not get how this can be. I feel as good physically as I have. I have done NO physical activity for over a month. And Bam I have no issues with hiking 5+ miles at 7500 feet. Or playing soccer for 2 hours two weeks ago. It really throws me for a loop.

Maybe this next pet scan will come out clear…here’s to hoping.

Thank you’s

I do have two other shout outs I would like to put in here. First is to Tricia Grawet. And her friends Tessa and Shawn Metzger. Tricia read my post from last week and was able to help me get my car into the ford garage that Shawn works at. It amazing acts of kindness like this that make me know the world is right. It seems like such a small thing but it was so helpful in my crazy little world last week. Shawn and Tessa went WAY out of their way to help someone they had never met. Thank you guys.

My friends Kalen and Clarissa. I did not intend really to head all the way to Bozeman but I am really glad I did. Kalen is a friend that I went to high school with me..though we actually really did not like each other in high school. He ended up working for SGRE years later and he became a good friend of mine. It was really nice to see someone I had not seen in a long time and just relax and enjoy life. Thank you two for showing me a different part of the world and your great town.

It is all for a reason.

The other is a random set of happen stance. Jen and I were looking for a camp spot on Thursday night. Every camp spot was taken in theTetons that we wanted to stay at. So we tried one in town that we had called and said they had room. When we looked for them we could not find them. We called again and they were way out of town. So totally bummed, we decided to buy some hotdogs and easy over the fire cooking food (we did not bring anything to cook with.) and headed to the one spot we knew would have spots. A very crappy/expensive/ overcrowded spot just inside the park (with no view of the tetons.) When we rolled up to the camp office I noticed the “Escape Adventures” van in the parking lot. This company operates in Moab and my company; Sheri Griffith Expeditions does a bike/raft combo trip with them. When we went to the door there was a line about 6 people deep. Jen looks at me and says I know this guy. It turns out the Escape Adventure guide is a friend of hers. After a little conversation he looks at us and says don’t camp here. There is amazing free camping about five miles up the road with camp sites that overlook the tetons and have the most amazing sunrises. He was right.

Maybe I am reading too much into it…But shit happens for a reason.

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

That Roller Coaster Thing....Again.

by arlo tejada 1. August 2013 14:35

That roller coaster thing....again?
a simpler time

a simpler timer


Just when I thought things were starting to look up. The roof collapses on my head.

My days have been rather amazing this last little while. Packed with family bbq’s, fishing, sight seeing in NYC, first class flight, 2 massages in two days, working my ass off on the soccer field, friend Bdays, Even shot my best round of golf at a very fancy private golf club and the USA even won the gold cup. Everything was lining up arlo. The first time really since May 2012.


Until yesterday I thought I had a plan I could count on. Treatment looked promising, Obe was a match to be my bone marrow donor, had a perfect queens apartment in the works, a classic cross country trip with a great friend lined out, was set to go to a renaissance faire with my cousin Marc.


Then


I received a phone call from Dr. G in New york.


“The trial has been cancel.”


-What?


“We had our second person reach toxic levels. “


-What?


“This means the study has been canceled and now we need to find a new treatment plan for you.”


-What?


I was in shock. Really for the first time I think I have been this confused and lost since I received the phone call that told me I had cancer. (Incidentally that was almost 3 years ago to the week.) I am starting to think July has it out for me.


I did not know what to do. I have not had treatment for 2 Months now! And starting over could mean another month if not more before I get treatment. The longer we wait just cannot be good for my overall success…


I called my mom right away. I did not know what to do. I was/ am really lost.


kicking it She jumped right on it and has dealt with basically everything since. She has a good grip on what the different studies are and how they might work. She has help ground me and allows me to bounce ideas of her and working together is good for both of us.


All day yesterday was a blur of changing plans.
• You might still be able to do a clinical trial in NYC.
• You have to fly to NYC to sign consent form for this other study right away.
• Get on a plane tomorrow
• Oh I guess you can sign them and send them to us. (this happen after my mom went all mommy on them)
• Hold on a trial we tried to get in at the beginning of July had opened up in SLC
• Insurance company will not cover “experimental” drugs. Call Patient financial services ASAP.
• Find tax forms from 2012 and 2011 and tons of financial records to send to MSK.
• Up and down up and down.
• And my brand new car is giving me some error signals. And the service center is full for a week.
        o This is a whole another area I could go off on! The Ford dealership not making my life easier. I called on Monday to have them look at my brand new car which is now giving me some kind of error message and says get serviced now. They said the earliest they could see me was Monday the following week. Which was to late but I made the appointment and went on a waiting list. Or so they said. When I called today they had no record for me. Now the earliest they can check the car is Aug 15!

• AHHHHHH


So where does that leave me…


It is still a very fluid situation. By the time this gets to your inbox my plans might have already changed.


Best Guesses:
• Cross country trip is off…for now. Maybe…
• I am going to sign up for both the SLC and the NYC trials.
• I am hoping to meet with the slc doctors tomorrow. Once I have talked to them I will know a lot more about my “future”
• Really is the best I know.

So there it is. What ever that is.

I will throw in a little feelings because I am pretty….messed up right now.


Park cityI am really upset about missing out on the road trip. I was putting this together as a kind of bucket list. I was looking at it like a last hurrah before buckling down and being sick for a year plus. I had planned to visit my 90 year old grandma in Oklahoma, maybe a trip to Buffalo River National Park in Arkansas, Maker mark Distiller, Mammoth Caves, biggest ball of stamps you know road trip things.


I guess I should be excited that I might be closer to home. It is also goo that I was not one of those in the study that had toxic levels. I just cant let go of the fun the road trip would have been.


I also was really looking forward to living in NYC. Kind of in that same way I loved the basement of Dasch and Megs’. It was cool experience, something I never would have done otherwise. It was so freeing and a great (probably not the right term there) way to experience something different with little worries. I feel NYC would be the same. I always kind of wanted to live near my cousins and family. I have only spent long weekends and such with them since I was little. But it was always a blast.


So I am sad about those things.


I am happy to perhaps be in SLC. Though I kind of feel like I have been there done that. But it will be easier to pack for that. And I was stressing a little on what to pack for 6 months in NYC.


But hell this all could change again soon.


As I write this I am getting updates from my mom about the SLC setup. Sounds like the Huntsman Cancer Center is not a tight ship.  Yesterday we overnighted my records to the address they gave us. They arrived at 8am. We called them at 10 and the nurse could not find the records. Turns out they got lost in the mail room. (why the hell did they tell us to overnight it and why did they not look for them in the mail room if they knew we sent them!) Then this nurse was supposed to print them and give them to Dr. Halwani who is running the program. When we did not hear back she called the nurse but now she is not answering my mom. So my mom called Dr. Halwani office. They had not heard of me and have not seen my records! They called back and said they will call me this evening to setup an appointment for tomorrow…hopefully. Do they realize I am in Moab?


So now I am leaning to NYC again. But I don’t want to make a decision on paperwork incompetence or rather unfriendly staff at the Huntsman. Or on the fact that I kind of want to be out in NYC. I want to make it on what is going to be the best for my health.


Ok that is all for now. If I do not send this soon, it might be out of date. Which is will be anyway.


I will try and do a little update tomorrow to let you know what is up.


Thank you for all the thoughts and prayers. And I apologize for not getting back to all of you. And I am mostly send to voicemail a lot of your calls. I am just so overwhelmed.

la sal

 

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

A Plan.

by arlo tejada 23. July 2013 05:19

A Plan.

I flew to NYC again on Thursday July 18th.  Then met with Dr. Gerecitano (why do all my doctors have hard names?)  and the staff of the Developmental Therapy Clinic at Memorial Sloan Kettering.  Yeah, “Developmental Therapy Clinic” not the place you want to find yourself.  

I have to admit this was a very nice experience. Really friendly staff and a much more define process than I have seen. Reminded me of the BMT process, but way more organized.  Check in here, blood draws here, dr office here, chemo here, all explained and organized very well. Also people checking on you using your first name.  But that could be because cute girl at the front desk loved my name so every time she saw me that day (I was there in from one room to another for hours) she yelled out my name and say I love that name.  Made me laugh and now I think everyone there knows my name.

I also had a wonderful conversation with the head nurse after talking to the doctor.  The drs are assigned for one day a week there. But the same 4 nurses will always be there. As I have learned in this journey, the nurses are the ones that know what is really going on and how the system works. They are the ones that can really answer how you will feel and what to expect.  She broke down the schedule, insurance hurtles and such.  She was really great kind of a commination of knowledge and kindness. Really a step above anything I have dealt with yet. Really great though she was still not nurse Lisa Sipple (No one is that amazing.)


I thought the meeting was an interview to see if I would quality. Really it was just to sign consent forms and move forward with insurance.  


I guess I was already accepted and they want to move very quickly.


There is one thing that concerns my mom. The trial is run by dr. Gerecitano so he has somewhat of a conflict of interest in suggesting this trial to me.  I have passed the trial by my other docs to see how they feel about it.  Dr Prystas thought it seemed like a good trial and I am waiting on Md Anderson and the BMT team. Still is a slight concern.

Here is the basic Plan (this is the very short version for those that get email don’t really read it and keep asking me questions I already wrote about.) (calling you out John G and Zach) 

  • Insurance approval (next two weeks)
  • Move to NY (soon, very soon)
  • Tests: Lots of Tests (after approval. Probably first week of aug.)
  • Chemo and Drug ( 2 Months to 6 Months)
  • Remission (After that…)
  • Move back to SLC (Right after Remission)
  • Allogeneic bone marrow transplant. Half Match Transplant.  (right away if possible)
  • Live? (Something like that)

Insurance Approval:

Most of the drugs will be paid for by the drug company. But the tests are not and any emergencies are also not paid for. This will add up quickly.

Of course you all know I have shit insurance. So…I do not know if I will get approval. The head nurse made it sound like most insurance companies like the trials cause it means they have to pay less overall. Other wise I can take the drug not on a trial (it is FDA approved and they then have to pay the whole amount. All about numbers)


Hopefully that will happen this week. July 22-26


There is also a chance that they can take my Utah Medicaid. That would be amazing and a huge help.


Cause the Arlo fund is not going to last very long. (with all these flights it is not going to last very long at all) Might be time for another Frisbee golf/concert in the park. Day.


Move to NY:

I have to fly back to SLC drive then drive to Moab. Get my car tuned up. Pack up what I need for up to 6 months in NY. Then drive out to NY from Moab.

I think I have conned one of my best friends to road trip with me out there. It takes about 3 days but we might try and find some fun along the way. West Virginia rafting or maybe PA? Eric and Kasia I am taking about you! Anyone have other suggestions of what to do one a across the country road trip? Largest ball of yearn?


Commuting?

The other hard part is the commute from my cousins in Long Island. Marc has been incredibly kind and graciously helped me out so far by letting me crash at his house. BUT It is about an hour and a half to my appointments…each way. It was hard on me this week. I do not know how it will be when I am sick. (that a lie, I know how it will be! It will suck!) The hard part will be coming back, And really hard on hot days or in winter. Remember it could be 6 months.

So I am looking to rent something closer to the city for a couple of months. The cancer center is right across the street from the metro station which is nice. I might also get a hotel for the couple of times on the bad days. Or maybe have a car service bring me in and out of the city on that day.


So if any one knows of a furnished 1-bed room place that I can sublet around Manhattan, Brooklyn, or Queens please let me know.

None of this is going to be cheap. Though does that really matter that much right now? Working on spending lulu’s inheritance as it is.


Tests:

Unfortunately the center needs a new pet scan and CT scans and they have to be taken on site. (which I think is actually BS.) but that means I have to come back out and do all these. The issue is that it will be more expensive in NYC than in SLC since I’m still on Medicaid.


I am not sure what tests will be needed but I am assuming it will be about the same as for the first BMT. I am a little concerned I might have to do the Bone Marrow Biopsy again. That one is not to fun.


The Trial: Chemo and new drug.

This is a Phase 1 trial that is close to moving to a phase 2. The trial will combine an FDA approved Lymphoma chemo with a drug that makes cancer cells more recognizable to the Chemo’s and to my T-cells. Then killing more of them. That is the best I could understand. Probably messed up some part of it.


The Chemo is Brendamustine. And the drug is ABT-888. (yeah it is so new it does not have a name yet)


The schedule is to do two days of Chemo, all outpatient. On Monday and Tuesday. First day will be about 5 hours long. Second day will be 10 hours long. On Days 3-7 I will take ABT-888, which comes in pill form. I still have to come in for Blood test to make sure my blood counts are good. These tests will happen every other day at the center.


There will be blood tests every Monday after that for 3 weeks. The next cycle will be shorter for the Chemo days.


This will continue for 2 cycles then I will do another battery of test to see if there has been any progress. If I am clear of the cancer I will go right into the Bone Marrow Transplant. Otherwise I will continue the treatment for another 2 cycles, then more tests. This could take up to 6 months.


They want me to be in NYC (or so) for most of this. Though I will have to steal away for my brothers wedding in Sept. But that probably will be it. Sorry Zach and Sarah.


Allogeneic bone marrow transplant

Once I get back to a remission the plan will be to move back to SLC and go straight into a Bone Marrow Transplant. This will be the more “life changing” kind of BMT. I will take someone else’s stem cells and use them to build a new immune system. The biggest advantage of this transplant is that the new immune system will not recognize the cancer and attack it more aggressively then my body is currently…Obviously. The disadvantage is that the new immune system can also attack the rest of my body not knowing it is supposed to be there. This is called Graft vs. Host, and can be fatal.

My sister was not a match for me with the Bone Marrow. But my brother is a half match. With Hodgkin’s there have been some new studies that show a half match is actually better. This has been even truer with Siblings in the study. The BMT was pretty excited about the half match. Not really sure what that all means for me.

This process will not be fun and my life will never be the same. The dr put it into a rule of thirds. 1/3 of people have no problem and go about things basically normal. 1/3 are really sick for a year+ and slowly recover, and 1/3 get really bad graft vs. host and are sick for a long time with it being potential fatal.


This will be rough. No crowed areas…ever, immune suppressing pills everyday, no river trips, always part of “the hospital system,” constant monitoring for the rest of my “life.”

So the next two weeks basically could be the last time I fell healthy in a long time…if not the rest of my life.

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

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.

 

Tags: , ,