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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

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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

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Arlo's Cancer Story

What is this a Life Rollercoaster I am on?

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

Arlo!Lets call this a rather bad week.

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

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

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

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

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

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

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

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

She did give some hope.

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

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

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

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

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

WOW…What does that mean!

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

Now, Now What do we do?

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

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

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

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

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

Thank you for all the support.
Much love Arlo

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Arlo's Cancer Story

the Last Cancer update or second to last update

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

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

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Arlo's Cancer Story | Arlo's Cancer Story

A Grand Life Still

by arlo tejada 18. January 2013 17:27
It has been a long time since I have written an update. I apologize for that.
Since I have been basically back to normal I have not had the inspiration to write and tell everyone that I am doing fine.
I probably should have.
My time since my last update has been filled with lots of fun and busy, busy days. And what I guess would be called the daily stress of life.
I struggled with getting back to normal for most of May and June.  Even though I was still recovering from the treatments I felt I had to get right back to work, and life. This was very hard for me for a while.  A lot of things seemed trivial, compared to where I had been.
I also had to pick up all the items I had dropped in the past two years. Working on house projects, Work projects that have been in the wings for way too long, along with all the other details you just don’t think about.
My overall recovery has been rather easy. Though I know I will have long-term side efforts from the 19 chemos, bone marrow transplant and radiation.  But I now I have a lot more time to deal with them later.
But listen to me I sound like it’s harder to live than to anticipate dying.
I have been working out and playing soccer a lot and feeling rather good. Both physically and mentally.
I also had a second scan in Sept that came out clean. Though I really thought it was going to be.
So I never wrote a thank you letter to all the wonderful people that helped me out.  I feel really bad about that. I guess I forget things quickly. Just wanted to get back to “normal life.”
The last couple of months I have been a bit more reflective than previously. In late October was my “anniversary” of getting out of the hospital from my second Bone Marrow transplant.  It made me think about the difference a year makes. 
I am so lucky it is hard to explain. Even without this miracle drug (which I will take until mid January)  I have had just a wonderfully time L-I-V-I-N.
My last 6 months and really 8 months since I started taking this new drug have been spectacular. Even though I can’t say I have lived every moment of every day as if it was  my last. (something I think I promised here once.) I have done a ton of fun things and visited a lot of my friends and family.
Here is a quick list:
·      Ran the San Juan River with great friends and a wild 30th bday party.
·      Ran the Middle fork and Main Salmon with my long time Friends Ari and Josh.  And was able to have a great 32nd birthday bash for myself on this great river.
·      Got back on a commercial river trip in Desolation canyon. Which is the river of my childhood.  And again it made feel like a wonderful child and why I love taking people down the river.
·      Visited family in New York for a cousin's wedding. Just a great trip of love and fun family events.
·      Visited New Hampshire and my college roommate Todd. Also “played” my first 2 days of golf in a row.  (something I picked up to “retire”)
·      Spent a wonderful week in Telluride for a friends 40th birthday part.
·      Went to my first professional football game. Even if the broncos’ did not play like it.
           
This does not count all the times I have spent doing the “mundane” things that I love. Playing Cards with my friends, Mountain Biking, hiking with Lulu, Wednesday night Soccer, Sunday coffee on my porch, and more little things than I can think of.
           
Last summer/fall seems like a blur of hospital rooms, pain, sadness and loneliness.  There were many nights last year when I could think of nothing more than what I am going to do for the next 3 weeks.
I guess really this little email is to tell you I leave for the Grand Canyon tomorrow!  I picked up this permit almost 2 years ago. At the time I just wanted to make the trip as maybe a last hurrah.
But now it is a celebration of life trip and I could not be happier for it. 
Since I should have notified all of you of my clear scan in Sept. I thought it was at least appropriate to let you know that I am getting back to things I love.  With only three more treatments,  I hope my final email will be in two months to tell you I have a final clean scan and I have been through the  last of my treatments.
Thank you for all your support .

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Arlo's Cancer Story

They Call it Life

by arlo tejada 18. January 2013 17:25

Hello Friends and Family,

I don’t even know where to start this last update.  How about I start there. I plan on this being my last update.  But that is a good thing.

On May 17th I took a PET Scan that came out clear.

Yes.

I AM CANCER FREE!

Me at the Full Moon.
In April, my doctor had suggested we do a PET scan. The May 17th date seemed to be appropriate since that would be about 1/3 of the way through the SGN35 treatments. She also thought it could show some improvement  (that might be the biggest understatement of all time) and would be a good base line moving forward. I had been feeling pretty good and kind of wanted to see where we were at also.


Silas drove me up to take my test at 9 am. We then went to the go see “The Avengers”. You know doing the “big city” thing. 

When we got back to Meg and Dasch’s house the PET scan report was online. I had to confirm with Silas that I was reading it right. It sure looked like a clean scan with all my lymph’s back to normal except a small mass in my chest, which was not Metabolically active. 

After deciding that this meant I did not have cancer, I grabbed Si and gave him a big hug and started to cry.

It is hard to explain the feeling I had. I had been really hoping and thinking it could be clear. But I really did not want to hope and be disappointed.  I had thought a lot about how I would react if I even had a clean scan. Even earlier in the week I had broke down in the shower thinking about how great it would be to hear the dr say “you don’t have cancer anymore.”

The funny thing was I had a Moab Travel Council phone meeting 5 minutes after reading the report. I was on the phone for about 2 hours the whole time hardly paying attention and trying not to cry on the phone.

After the meeting, I started sending  out a ton of texts and add it to Facebook.  I still have not had a chance to read all the responses. At dinner my phone just vibrated the whole time. I tried not to be rude and look every time but it made me so happy each time knowing another friend or family member had heard the news.

I can truly say that was one of the best evenings of my life.

For the rest of the night I was kind of in a haze.  I fell asleep crying and hoping I would not wake up and it be a dream.

I have been riding at least once a week

The next day I awoke with the biggest grin.  We meet with the Doctor at 1pm. It really was a long morning. I had hoped to go for a mountain bike ride with David Everitt and Silas but it was pouring rain. I had to laugh at the crappy weather. Everyone kept telling me how nice it had been for the past month. The one time I bring my bike to SLC to go ride and it had to rain, just my luck…but hey  I don’t have cancer. I guess it all evens out!

I was eager see the dr because I really wanted to hear her words and be sure I was not misreading the scan.

Dr. Prystas went over the details and upcoming options and such. She was going through her physical exam and I just had to ask. “So what exactly does this mean?” She kind of laughs and says. “Arlo, You are in what we would call a Complete Remission.” WOW. Those are by far the most beautiful words I have ever heard. I could go on about the poetic-ness of the words “complete remission.”  For me, I must admit, I was pretty sure I would never hear those words. And every time I say them or write them down now I start to cry. The only thing I can think to equate it to is "It's a Boy/girl" for parents.

This is not all happy though. The Bone Marrow team is still pushing for a Bone Marrow transplant with someone else’s stem cells. I have explained before that this would end my way of life. The reason for this is that the new drug just is unknown for the long term. Will it really keep the Cancer down? And there is a decent chance it will come back at some point.  So I still do have to be concerned and vigilant. There also are no long term studies on the drugs, which means I could have other issues down the road. We did decide to take the drug to its completion and discuss then more options.

To be honest it has still not really hit me yet. I am still trying to figure out what it means. I have been preparing myself for so long for death, that this is like slamming on the brakes of a train. Now what way do I go?

So what does this all mean….Well I guess I have to go back to work and unretired. I am having major anxiety and stress over“life.”  I have put off so many of the “trivial” things that it is overwhelming. I think that is going to be my word for the next little while. Overwhelming. Shit it looks like I am going to have to mow and rake the yard now.  And no Porsche L…yet. 

To “know” I was going to die soon made life really easy. It just meant everyday was special and to take care of it and those around you. Now…..Life is back. But I feel so different. I feel that I went through this huge change…but in the end I am just back to the beginning with a sterile body that weighs 60 lbs less.  Maybe that is a bit harsh. I feel like I am now searching for my purpose again.

This will sound stupid but I am also very afraid of losing the compassion. Ok that is the wrong word. I am afraid of me taking for granted the love that was shown by so many people and even more important my openness to all these wonderful people in my life. And to those that have never met me but I inspired. I really really hope I can take this experience and make good come of it for a long time. It is hard to think I am not changed because I have. but I just don’t know how yet.

In an earlier email/blog at the end of my first line of treatment I wrote a list of “the Good, the Bad and the Ugly of cancer.” Looking back on that, it was not only premature it was also…insincere. I really thought it was not going to be a big deal and would be something I could also tell as an interesting story at parties.( which I am sure I still will, youjust can not stop me from telling stories.)  I claimed that I would never call myself a “Cancer Survivor.”  I can tell you that is not going to be the case now.  I would say I got pretty much the whole cancer experience.

I lied about this being my last update. I have to do a large thank you letter and another Good, Bad and the Ugly. Both of which I hope will clear my head a bit. 

Sabaku Sushi made a Remission roll for me
In the end I can not tell all of you how much you have meant to me. I am so so so appreciative of the many people around me and their amazing kindness. Yes this new drug saved my life from the scientificside of things but I can tell you there would be no reason to take it if it was not for my community, friends and family. In the past three days I have been applauded and hugged so  many times and by so many people. It truly is wonderful this life I live, yes live.

I have mentioned I am not religious though I am spiritual. I really believe that all of your prayers, energy and love help get me through all this.

Now I am going to try and reorganize my life and live. And live…And be the best person I can be, for I truly have a second chance.

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Arlo's Cancer Story

Update on second treatment

by arlo tejada 18. January 2013 17:23

Hello Friends,

Things have been on the up swing for a solid three weeks now. That could also be the lengthening of the days and the coming of spring.

Town has started to fill up with festivals and the start of tourist season. Which also means boating season is right around the corner!

I have been pushing myself a little bit too much in the last couple of weeks. Starting with the San Juan trip. Then I did some good hikes with my friend Dave. My 4th round of Golf ever. (I scored nothing over 9 and nothing under 5. Not bad for clubs from the pawnshop. In fact the shop owner gave me a great deal on the crappy clubs because “once you get pissed off at the game you will throw the clubs into the water and I will get them back anyway.) A little to much stress at work. And a day of Kickball. This has left me a little drained and I got sick on Monday March 12. So I have been trying to take it easy now. That should be easier with March Madness going on, probably not going to leave the couch for days.

A little bit of a side note I wanted to mention something. I have a lot of peopling tell me that I am brave. I wanted to express my feels that I am not brave or a hero. (I am fine with people thinking I am an inspiration but not really) Being brave is going into something that could be dangerous to help others. Like Firefighters and marines. I am not going anywhere dangerous. I am stuck where I am and just have to deal with it. I do not have the choice to run away. I explained this to my friend Charli and her response was perfect. “So You are not brave you are just L-I-V-I-N!” my new motto.

I received news that I will be able to do most of my treatments here in Moab on March 5th. This is makes me amazingly happy. I love meeting with friends in SLC but it just is nice to recover at home.

I went to the high dollar donor dinner for the Skinny Tire Festival (a highlight of my last couple of weeks, And that is saying something)
The event is for those riders that raise the most money for cancer research. These are such dedicated individual and wonderful people that really love both biking and trying to help find cures for cancer. Mark Griffith and Beth Logan are the organizers, and they gave me a ton of gifts one being a Porsche!!! Ok it was a Hot Wheel Porsche but still I was stoked!

The highlight and hard part was I was asked to tell my story in front of the group, about 12 people. I went over how I found my cancer and had to go to SLC for all my treatments. I also explained the process of how I chose to do a BMT over radiation. At this point I broke down crying. I had never really told the story but to friends. And In my updates. The part that really got me was when I explained that my life expectancy after a failed BMT was about 18-24 months. I looked up and the whole room was balling. Which sent me crying even more. There was another featured guest an ex Professional rider who help Lance Armstrong win the first two tour de Frances. I remember looking up at him and he was crying pretty hard with the rest of the group. It was hard to continue. I went over the new drug and how it worked. I also thanked them for their support because without their help I would not be able to do the rest of my treatment in Moab. The Skinny Tire Festival and all the money it receives help pay for the infusion center at the hospital.

I had to repeat this story the next day in front of 250+ riders. I did much better as far as holding it together. I was honored that Mark and Beth asked me to speak. (I have to admit I love attention, even speaking in front of groups about something very personal. But all of you knew that already.) Here is the story written in our local paper about the event and my talk.

We (Sheri Griffith Expeditions and the Tejadas) have helped to support Skinny Tire from the beginning. We did it because it was a great cause at the time and to honor our friend Duane Griffith as the inspiration. Sitting in the Moab Regional Hospital infusion center for my second treatment I could not help but think about the irony.

On to the real story. My second round of was on March 13. It was in Moab at the new infusion center. Which had the most comfy seats I have sat in for chemo, ever. The seat had a heater in it, like a luxury car! Crazy. The drug did not go down as well as last time. About 1/3 of the way through I started to get short of breath, overheated, light headed and nauseas. Instead of calling over the nurse I just try to concentrate on not vomiting. I keep thinking damn “Arlo don’t puke on this nice new chair” I finally did call over nurse, at this point I was a bit out of it. He stopped and checked my vitals. After a little while may 5 minutes things came back to normal. It took another 5 minutes for my stomach to settle down. We then decide to run in the drug at half speed. This helped and I did not have any more issues.

The drug seems to act fast. Or it is just in my head. But I felt great all evening. To the point I could not sleep and wrote most of this update then. I still feel great today. I could not go to sleep so I stayed up most the night filling out college brackets (might have to check those in the morning) and organizing my music and photos.

Thank you all for your emails. I really appreciate getting notes from people I never have meet. There is something cosmic about it. Maybe that is the wrong word but you know what I mean. It’s just nice.

Thank you.

Arlo Tejada

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Arlo's Cancer Story