Adventure with a Touch of Class!

Call us today!

800-332-2439

We have a new Rafting Website!

by GriffithAdmin 18. February 2013 05:51

New Website and
Online Reservations System

New River Rafting WebsiteWe have been busy during the off-season working on many things to make 2013 even better for our guests. One of the major projects we have had fun doing is updating our website, www.griffithexp.com.


We have made The Sheri Griffith River Expeditions site easier to navigate, and have included more information and details and photos on each of our trips.

We have also added an easy Online booking system. You can book online anytime you like, even if it's after business hours. This system also makes it easy to have other join your trip and send out invitations to your friends.


We hope you enjoy surfing our website, and checking out all of the trips and services Sheri Griffith River Expeditions is offering for the 2013 season. We hope to be part of your family's fun this summer!


Join Our Community

Tags:

Colorado River Rafting

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 .

Tags:

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.

Tags:

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

Tags:

Arlo's Cancer Story

My Better Week

by arlo tejada 18. January 2013 17:22

Hello Friends,

 

I have been meaning to write this email for a solid week now. Those on Facebook know that I have had possible the best week since last spring. I think I put it in a previous update that when I am feeling good I don’t update as much. Well I think that was the case, plus I had to get ready for my first overnight river trip in 2 years. And that will always make me feel great.

 

I apologize to everyone wanting to know how the new drug went. (Spoiler Alert: The update on the drug is at the bottom.)

 

From the response I got on the last email I can tell I was way to negative.(though lets be honest I had a pretty decent reason to be bummed.) I want ever one to know: I AM NOT GIVING UP. I was just being realistic. I am going to fight and do as much as I can to heal myself. I did not mean for my email to sound so defeatist. I just refuse to take treatments that are just going to make me sick with very little chance of success. I want to do as many fun things as possible while living the longest I can. (I guess we all do) I did get offers to stay/visit all types of places from Puerto Rico, to Grand Canyon trips, to Montana and even first class flight offers. So I guess my last email was not a total loss. Now I just need to take up some of those offers. Anyone live in Hawaii, Middle fork permits, trip to the moon?

 

This next paragraph is rather similar to an update I wrote in the summer. But since I am closer to death than ever it feels appropriate to put these thoughts in my head back into another update.

 

Something I want to reiterate is that I am not afraid to die. This is something I have been thinking a lot about. And not in a negative light for myself. As long as I can live a fun, and active life for what time I have left I will be rather happy for myself. Do not get me wrong, I want to live another 30+ years, have a family and worry about racking the yard. But I am fine with dying in a year or two if I can LIVE up to that day (plus I really hate racking the yard anyway.) The hard part for me is You. As I am fond of saying “I am not worried about dying because what do I care when I am died. I am died.” But it’s my friends and family that I worry about. If the roles were switch and Zach or Obe(or any of my friends or family) had cancer, I would be beside myself. I feel this disease is not that hard on me (though the radiation really did suck) but really hard on my friends and family. You are the ones that have to think about me while am gone.

 

So really I am the lucky one.

 

I have had many conversations over the past week about my future. Whether it is succession plans at work or just talking to friends about life, it is odd to talk about everything is in a very short term prospect.(On a slight side note. I think I should buy a new car. So I can have a new car once in my life even if it’s just for a couple of years. I wonder if I can talk Dad into getting a Porsche?)

 

Obviously everyone on our San Juan trip wanted to know want was going on. It was very refreshing to talk about it with friends and open up a little. That also could have been just feeling good and being on the river talking. (sometimes I think I was a little to open for their comfort.)

 

All that being said. I was in a bad place after having been sick for weeks. And then getting news that the cancer grew and spread in my lymph’s, in my lungs, and in my bones did not help my mood.

 

But the drug (sgn-35) infusion went great on Tuesday Feb 21. Obe went with me. They also gave a drug that helps strengthens bones. I guess the bones with cancer are more fragile. Which is a problem since there are two active spots in my neck on T1 and C1. Along with my right shoulder and left ribs. My neck has been a huge issue. I could not get out of bed on Monday Feb 20. I had to sleep in a sea collar for a week. But the drug instantly made this better to the point that now I don’t have to take pain meds.(which I was devouring, just to get out of bed.) It’s still there but getting better each day. The week before the treatment I had a soccer tournament. I could hardly run and it really was a bummer that I could not help my team out.

 

This really leads me to what I have been talking around, and probably should have started with. (Damn, I wanted this to be a happy email.) Anyway, I instantly felt better after the first round of treatment last week. I woke up on Wednesday with a whole new attitude. I did not feel tired. In fact I had a ton of energy, and motivation. It shrank my lymph in my arm. Which is not uncommon. All the first rounds of chemo I have done have shrank the lymph’s. But the more exciting part is my energy is way way better. All of which I have not had in 7 weeks if not months. On my river trip on the San Juan I was able to really hike. I felt like my old self.

 

Even the ladies in the office noted that I had “More pep in my step” just from Monday to Wednesday.

 

I don’t know if this drug will work. But I feel confident that it will keep the symptoms down enough for me to enjoy life while I can, which means I should be able to swing my Grand Canyon trip. ( Which is one of my priority for the year, It is up there with visiting all of you) And I am decently confident it will cure me all together. I can not wait to tell my hospital stories in ten years.

 

I have read a couple of blogs from others that are also going though the same drug. There are some side effects and they vary greatly. The worst two are 0 white blood cells, so you have to take drugs to boost your immune system and be really careful with getting sick. The other symptom numbs your finger tips and can grow to your arm. That would suck to get. Especially if I have to row the Grand.

This is a really rambling update. I hope I have reassured all of you of my commitment to my life. And want you all to know I love you very much and appreciate all the advice, diets, prayers and cure alls that are sent my way. I really can not do them all but I will try and I have improved my diet to improve my immune system. I do not pray. But I truly appreciate all of you that do for me.

 

Thank you.

Arlo

Tags:

Arlo's Cancer Story

Life's Final Stretch

by arlo tejada 18. January 2013 17:20

Hello Friends,

 

I want to thank all my friends and the outpouring of support I have received. I had a wonderful response from my last email. And I had a great quote from my friend Diana Cohen. She said “If you measure the wealth of a man by how much he is loved by others you are a millionaire. You are a lucky guy !” I always knew that and really never wanted to be in a place to have it proven but it is nice to see.

 

This is not going to be a fun update. Which I guess takes all the suspense of what I am going to write.

 

I am going to skip all the what I have been doing lately stuff and move right to the meat and potatoes.

 

I failed my PET scan.

 

Not only did it turn up cancer, but it grew and spread. I kind of knew I would still have cancer. My lymph’s grew out about 3 weeks ago. And I have had symptoms like night sweets and itching for a week or so. I was surprised by the spreadimg of the disease. It has grown in the left arm pit, moved to the lungs (still not quite sure about that), bone areas in the right shoulder, and left ribs.

 

So want does this all mean. Well I am in very bad place. Not many good options. Luckily there is a brand new Hodgkin’s drug that just got FDA approval in Aug. It’s called Brentuximab or SGN35. Here is the link if you are looking for some dry medical reading http://www.cancer.gov/clinicaltrials/results/summary/2010/brentuximab-Hodgkin1210 It is made by Seattle Genetics.(not sure why I put that in there) It acts different than chemo. It attack the specific cells that are thee Hodgkins.

 

This drug has pretty decent success for people in my situation. 80% of people had a reduction in the tumors and 35 percent having complete remission. These are good numbers considering people in my situation have an average life expectancy of just under a year. But it does not have long term stats since it has only been around for a couple of years.

 

The drug is really not cheap. It cost 16000 per time and they recommend 16 times. That would be rough. I am hoping Medicaid will cover it. I don’t think my insurance will. The BMT coordinator told me later today that Medicaid will cover it with a 3$ copay. I will not complain about that.

 

There are some other options. A stem cell transplant with someone else’s stem cells, is the next best option. The problem is the potential for Graph vs. Host. Which is where the new immune system attacks my body as a foreign disease. This is a horrific death and I am pretty sure I am not going to do this at all. There are also a ton of other complications and it would change my life completely. I would basically never be able to do the thing I love outside again. Not really a good option for me.

 

I can also do maintenance chemo to keep knocking down the cancer for a while. Not sure how long that can last but it is an option. and could prolong my life by a couple of years.

 

So my life expectancy does not look great today. This will sound sick but right now I am trying to manage my treatments and life to do my Grand Canyon in November. That would be a really nice treat if I am going to die soon. My last hurrah.

 

I start treatment next Tuesday in SLC. I am hoping that after this first one I can do the rest here in Moab. This first one will show how hard the side effects are and if I can maintain my semi normal lifestyle in between the treatments. From the studies it looks like the side effects are a lot less than Chemo, which is nice.

 

That was mostly details and my options. Now to the emotions part. How do I feel? I have been up and down for a while. I cried the whole way to SLC for the test. (because I knew the Cancer was still there) I'm pretty bummed about potentially missing out on all the great adventures that will be coming up and such.

 

I have started to think about a "bucket list." that is funny, starting a bucket list at 31. Hell I might even be a year or two to late also. I really want to see all my friends and far away family one last time. I also really want to do a middle fork trip in Idaho. There are are a tons of others also.

 

I want to take advantage of as much as possible. I was thinking about going Smitthy style. Get a sweet boat setup and start running rivers for the rest of my life. Rouge, Cal Salmon, Cataract, Arkansas, etc.

 

There are also a lot of places I have never been That I would love to see, Hawaii, Europe, Egypt, Middle fork of the Salmon. Maybe I will buy an RV and start traveling. But I like Moab too Much to leave for too long. Maybe I will just do 10 day Cataract Canyons and such. Or week long dailies. (I am not sure I will like that either.)

 

I am writing this quickly to get it out to everyone right off the bat. That way I don’t get flooded with texts asking questions over the next day or so. So I am not going to go into how I feel too much.

 

Lets just say knowing if I live 5 years I will be doing good is not a great feeling. But it does cut out a lot of the bullshit. But it is what it is and I am not overly worried about it…yet. I just hope I am not sick the whole time. That would defeat the purpose of being alive.

 

I feel great right now. so I jut can't believe I am dying. I hope I feel this good or even better right up to thee time I kick it. I guess we all want that.

 

I did not mean to say earlier that I don't want people to write and contact me. I love people emailing and texting and calling with words of encouragement. It really does uplift me.

Thank you.

 

Arlo

atejada@griffithexp.com

Tags:

Arlo's Cancer Story

Final BMT

by arlo tejada 18. January 2013 17:09

Hello Everyone,

I am sorry for the very slow update. The treatment was very difficult and the recovery has been slow. I also knew this update would be super long and did not want to do it.

I will start from the beginning with all the details that most of you find boring. (feel free to move to the feeling part but there will be a test)

On Tuesday Sep 27 I got my new and last (fourth) line in. The process was quick and easy. I think, I was really high on the drugs they gave me.

On weds Sep 28 I was admitted to the hospital. My dad and mom helped move all my items into my new room. E812. The room was smaller than E803. But I really did not care. I brought a lot less stuff and used even less. I did not even setup the xbox this time.

I started the Total Body Irradiation (TBI) at 9:00am. This is not a fun process. The first time also took a long time because they had to adjust all the equipment to fit me. In this process I am strapped into a cage like structure with a bike seat. And not the cushy cruiser type. It reminded me of why I stopped road biking years ago. They then strapped the lead blocks on to protect my lungs. The treatment took about 10 minutes a side. 10 minutes is a long time to stand there. And then switch sides and do it again.

I made it back to the room around noon. I did not feel great right off the bat. I had to go back down around 4 pm later that same day. While I was waiting to get in the "machine" I threw up.

The whole TBI experience was horrific. I did it twice a day for 3 days. It also turned my skin purple. not a good look for me. I threw up the second day three times. they started me on a drug called Marinol which is synthetic THC. This seemed to help a lot for a couple of days.

Several friends came by during this period and I really appreciate it but I did not get much of a chance to chat with them.

By the time the Chemo came around I was looking forward to it. Looking back I really do not even remember getting the chemo. I think I am immune to chemo at this point.

By sunday Oct 3 I received the last of "my" chemo… hopefully for ever. I did not really feel like celebrating.

I was barely eating 1000 Calories a day which barely kept me off the "liquid diet" and not the type I enjoyed in college. I did not have much of an appetite but the real issue is that everything tasted like wax/chalk. I mostly ate shakes and ice cream. Even these were not great. And now that I am out ice cream has been awful.

This was the first time in this whole year and half process where I actually felt like I had cancer. All the "classic" side efforts where in full effect: Bad mouth taste, no appetite, bald head(though I look good with that), way tired and no motivation. Oh and I was purple.

I lost weight. I went in at 185 pounds and came out at 165. Last year I was at 210. So I have lost 45 pounds in about a year. I am still at 170.

I received my stem cells on Weds Oct 5. It went well and really is anti-climatic, except for the cream corn smell.

On Oct 6 they started to give me the Kepivance drug again, that is supposed to protect my mouth, throat, and stomach from the TBI. It also makes my mouth feel very…full? With lots of spit, and it was causing the texture problems in food. I talked the doctors into doing one less dose which I am very happy about. (It also costs 10k a shot) At that point it was driving me nuts. Constantly clearing my throat and spitting. Nights were not very fun and it felt like I was choking. I had a sore throat start to develop on the third week. The doctors said this was normal from the drug. It felt like a boulder was in my throat. Each day this boulder moved farther down my throat into my chest. One night this all ended in a bloody mess. In the middle of the night I woke up and cleared my throat and felt instantly different. At the same time my nose began to run. Knowing something was wrong I ran to the bath room and spit out a huge bloody luggie. And my nose was gushing blood. The nurses came in and gave me platelets and something to pinch on my nosebleed. The next morning, other than a little blood in my nose, I was clear. Sorry for that rather gross retelling.

The rest of the tour in E812 is bit of a blur. I never got bored because I felt like crap and sleep a ton. Also October is just a great month to watch sports: College football, EPL and Champions league Soccer, NFL, and playoff baseball. Every night had something to look forward to. I had only a couple of small fevers which did not last long but never got as sick as last time.

I received 2 blood transfusions and 3 platelet transfusions. (just in case you cared)

I was finally able to start eating a bit on Oct 11 thanks to some tomato soup from My friend rachel. I was put on TPN (liquid food) on thurs Oct 13. It was really my idea. I just felt I could not keep up with what I needed for calories. I would stay on it until I left.

I was uncomfortable the whole time. Most of this came from the TBI. My body itched and was really dry. The last couple of days were really bad. My hands had swollen to little vienna sausages and they were painful. Like skiing without gloves. My head hurt. Stomach was really uncomfortable.

My WBC came back really fast and on the same day as last time. My favorite Nurse Lisa was so excited she printed on the lab results for me to take home. I was released on Tues Oct 18, the same amount of time as last time. I felt uncomfortable leaving the hospital. I was way below 100% and was not sure I could trust myself to eat and drink properly if I was out of the hospital.

I did pretty well at Meg and Dasch's. I could eat, Ramen (460 Cal), Ensure(350) Yogurt-strawberry(170 Cal) 4 Gatorades (125 Cal each) and Chicken Noodle Soup (120 Cal-almost a waste of my time). I blew through their bowls and spoons in the first couple of days. I have been able to keep calories around 1500. Yep I have to keep a calorie sheet for the doctors. Here at home I am still barely able to eat more than soup and yogurt. Though I have started a little coffee, hence why I have finally started to write this.

Here is my first Product Endorsement: The itching stopped after Megan gave me a bottle of Olay, Ultra Moisture: in shower body lotion (with Shea Butter.) This stuff worked like a charm. I went in dry and scaly like a dragon. I came out soft as a baby's butt! It was unbelievable! It also lasted for days. I had been using a ton of lotion, and aloe but they only lasted a half hour or so and made the itching worse.

The only other boring detailed news item is my meeting with the radiation Doctor on Tues. Oct 25. He recommended a 15 day spot radiation for my left arm pit which has been the major problem area. After seeing my major hesitation he told me that he could do it in 7 days also. He wanted to start right away and not wait for the final tests which are scheduled for mid January. I am still deciding on this but I think I will do it at the end of Nov. Not looking forward to going back to SLC even for a week.

Oct 25 was also the day I got out my line for the last time.

I made it home on Friday Oct 28th. In a highlight of my fall I married two of my very good friends Gretchen and Jon Fuller on saturday.

Now for the feelings part, I think I need more coffee.

This treatment was really hard in a variety of ways. I really felt like my body was being broken. I was purple, my arm pits were black(really black), Messed up stomach, Mouth of ash and just feeling beat down. I thought more than once that I need to trade in this body and get an upgrade.

It is great to be home but it is also very difficult. It is great to see my dog, It sucks that I do not have the energy to walk or really play with her yet. It is great to sleep in my own bed but I can not stop thinking about all the house items I want to get accomplished.

Really it comes down to that I am in between worlds. For almost 7 months I have only focused on cancer and cancer related stuff. Now I am almost thrown back into my "old" life and it's responsibilities and its oh so "important" items. When I was up at Dasch and Meg's I had no duties and felt board and without purpose. Now that I am home I feel overwhelmed and when I take time to relax I feel lazy and not appreciative of the "new" life I have to take advantage of. Maybe life seems boring if I am not fighting for it. I hope I can get over that thought in years to come.

I am trying to stay grounded on the fact that I need to keep caring for my body. I know I need not rush things, especially with still not eating and drinking enough.

I feel like I should have a lot more happy feelings about being done than I do. Maybe I am being pessimistic. I just do not think I am….clear. Now do not get me wrong, I am still very positive, I just think about how nothing has worked yet, so will anything work? This last treatment kicked my ass for the first time which actually makes me feel more confident that it worked this time. Plus I have not had a PET scan since both BMT treatments. But I have to look at the potential that it might not have worked and what I will do if it did not. There are still a couple of options but the main one is to do a Stem Cell transplant with others stem cells. Now there are a ton of issues with this. To be honest at this time I am almost positive that I would not do this. knowing that fact does scare me a bit and is heavily on my mind.

I really want to celebrate but I can not with the major uncertainty of the PET scan. And the fact that I still really am not up to speed.

I hope that in mid January I will feel great and be able to celebrate. And then I will have a very positive email for all of you with lots of uplifting and interesting "life with Cancer" thoughts.

Thank you for all the great visitors I had during my latest stay.

I do have to thank the great nurses in LDS Hospital. Many I have gotten to know well since I have spent a total of 56 days in there. Though I did have a run in with one bad nurse for the most part they were all wonderful. Especially Lisa who was like a hospital mom who pushed me when I needed it and checked up on me even on her days off. She went above and beyond to help me know what was going on and listened to my concerns and made sure the doctors/PA's knew my issues. I had someone in the system to fight for me. Which was a great feeling.

Thank You

Arlo

Tags:

Arlo's Cancer Story

Ready for round 2

by arlo tejada 18. January 2013 17:04

Hello Friends,

I’m just sending out a short update to let everyone know that I’m in SLC and getting ready for my second transplant.

On Sep 22 I met again with the radiation doctor and went over the  procedure and side effects. The also measured me for the lead plates to protect my lungs. Then they tattooed 4 dots on my chest and back to line up the block for the treatment.

On the 23 Trina and I meet with the BMT doc about the specific details of the second BMT. They think it will be a little bit harder on me than the first but not to bad.

The big issue is that the total body radiation can wreck havoc on my mouth, stomach and throat. So they give me a drug to help fortify me. On Sunday I started a drug that helps fortify my mouth from Mouth sores. I will take it for 3 days prior to the start of the process.

Today the 27 I got my 4th line in. I had to talk them out of putting it in on Friday, which would have ruined my weekend. 

I will be admitted on weds aug 28 at 7:30. I will be taken to radiation at 9am and then again 6 hours later. That will happen for 3 days.

 

I start the last chemo on Oct 1. The stem cell replacement will be the 5. Which means I will smell like cream corn on the 5, 6, and 7.Then it will be 12 or so days until I get out.  

 

My biggest concern for this treatment is a lack of guests. Last time it was a great time of year to steal away from Moab. Now it’s perfect and no one wants to leave.

 

So here is my not so sly push to get people to visit me. All my visitors last time truly made the time go by a lot quicker. I expect all you that live in SLC and did not visit me last time to come by this time.

 

You can again sign up on the care Calendar. Or call me/email/text/facebook me.

To sign up for a visit http://carecalendar.org/index.php?cid=71236 Login is 71236

The password is 5818

 

I will send out another update when I actually get admitted on weds. That way I can actually get you my room. Oh and I am at LDS hospital. (several people last time went to the wrong hospital.)
My address is E803 LDS Hospital, SLC, UT 84143

Looking forward to being done.

Arlo 

Tags:

Arlo's Cancer Story

Moab!

by arlo tejada 18. January 2013 17:03

The Latest Update on Arlo

Moab

Moab!

Hello Everyone,

It's been a long time since I have written an update. I have been enjoying my free days and not really thinking about updating you.

I left Salt Lake on September 2. The dr did not want me to leave. My WBC had drop to a very low level. I had to do a very large charm job and promise not to go rafting. They also gave me a Neupogen shot which help increase WBC.

On Tuesday the 6th I went into the hospital in Moab to get my WBC check. The WBC had jumped to normal levels which was great news. Otherwise I would have needed to go back to SLC for a while.

I have been really enjoying my time home. I even worked a couple days in the last weeks. My biggest issue is stress at the end of the day. Each day I lay down thinking I have not "lived" or done enough in that day. I know that sounds odd and not something I have ever thought about.

I've had to stop myself from tearing apart my house. I have all these new ideas from living with Dasch and Meg. My brother talked me out of taking down walls, tearing out carpet, and putting in a new counter top. "arlo you just got out of the hospital you don't want to live in a construction zone while you're home, do you?" So instead I moved all the appliances, and painted several rooms.

I have also been enjoying the town of Moab. There are always so many fun events going on in Moab. I was able to attend the farmers market, Bad Art show, birthday parties and have all the boys over for a Sunday football party. This past week I was able to play a couple hours of soccer. This was the first time I did anything really active since February. I could feel my lack of strength and my lost lung capacity but felt good overall. Not bad since I'm only 3 weeks out of the hospital. I am really sore today.

I went to SLC to get a CT test done on sept 12. The test really did not tell me anything. It showed that my lymph's had shrunk but are still larger than normal. This could be from dead cells and may not be from cancer. So in the end this test told me that the 2nd BMT is a good idea. To be honest I think the cancer is not gone. I can still feel my lymph under my left arm.

My timeline has changed a little bit. I will go to SLC on Thursday sept 22. For a radiation simulation. The 2nd BMT has three days of radiation two times a day. The next day I will meet the dr to go over the details of the process and sign waivers. Then On the 25th I will start a drug to help fortify my gut and intestines. I will take this drug for three days. On the 28th I will be admitted to the hospital. I will also get my 4th line and start the radiation. I will get this for three days. After that I will get 3 more days of Chemo and hopefully that will be my last. One day of rest then I will get stem cells from there. Then it's recovery time of about 10-14 days.


Ok this photo is from a couple of winters ago but it is Moonflower Canyon.

I am very happy to have come home for this little time. In fact I'm writing this update in beautiful Moonflower Canyon watching my dog chase sticks. Is that not what life is about (except maybe the part of me typing on the laptop in the middle of a canyon.) In reflection I feel I have really taken advantage of my time home. I do still wish I had more motivation and energy. I have so many projects I want to do that it causes me some stress. Every time I go into work I look at my pile of stuff I need to do and get a little heartburn.

I'm not really looking forward to going back into the hospital but I feel much better about it than I did 3 weeks ago. I'm a little excited about going in knowing that this should be the end of it. I am nervous that the second BMT will not be as "easy" as this last one. I worry that I will have a longer recovery time.

That is really all that is happening. I hope I can do another update when I'm in the hospital but I'm not sure that will be the case.

Tags:

Arlo's Cancer Story

Reflections of Cellblock E 803

by arlo tejada 18. January 2013 17:01

 

 

Arlo's BdayHello Everyone,
I have had a ton of time to write an update but I have had very little motivation to do so. In a way there is so much to write about that I think you would be interested in but there is really nothing going on that is that interesting for me to write about. And in the end this will again be too long of an email.

Some of this email was written in the hospital and some after I got out. So this email may bounce around a bit and it will be rather long.

I guess I will start with just the facts. I will talk about how I'm feeling later.

I got into the hospital on the 4th. On the 5th they started the Etoposide and Cytarabine Chemo. The Cytarbine came in two parts, one around 10am and one at 6pm. The Etoposide came around 1pm or so.

Arlo's BdayOn Friday Aug 5th Red Oelerich (runs Outdoor Utah Magazine), Kirstin Peterson (owner of Rim Tours) and Eric O (owner of Windgate Adventures) came to visit me They were all in town to attend the outdoor retailer show.

Sat Aug 6th: felt fine but started to feel the boredom of a hospital with nothing to do. Started playing and losing at scrabble online. I'm going to blame that on the chemo.

My dad and mom were around for the weekend. Mostly my errand boys/ food runner. Which was really nice. My dad left on the 8th.

Arlo's Bday The rest of the week blurs together. I started figuring out the day time tv schedule that worked for me. And Sorry Carissa I could not get into General Hospital. The first week was the chemo week. It was also the most boring. I did enjoy watching the USA/Mexico game with my mom on Weds Aug 10th. Other than that it was just really boring. I walked the halls a least once a day. But this was an exercise of extreme sadness and it was hot. The halls are full of sad people looking sad and barely pushing their poles around. It was amazingly depressing. I felt rather upbeat and this little masked stroll made me unhappy. The dr's keep pushing me to go to the hall more. I guess its good for blood clots and such. I just hated it.

I could not read very well. It hurt my head. Also video games did not feel very fun. And also hurt my head. I get the "what did you do?" question a lot And looking back. I can’t think of anything I did. Very little work, fair amount of tv. A couple of movies, some sleep. My bed did face the clock and I did watch it slowly click away. Yeah it was that boring.

The Chemo never really got me sick. Just felt a little off.

The last day of chemo which was Melaphine Aug 9th. I also started a steroid for a couple of days.

Arlo's BdayThe "big" day was Thursday the 11th. They put my stem cells back in on this day around 11am. It worked kind of how I've explained. The lady came in with a garbage can/R2D2 looking box with my frozen stem cells in it. The temp in the box was -187 C. Yeah that's cold. They then set up a warm water bath for the stemcells. Something like fondue. Then they read my arm band, read the blood label, confirmed that they were my Arlo's Bdaycells then thawed them out. Hooked them up, and in they go. There was a slight tickling sensation and bad taste in my mouth when they go in. I had been warned of this so I was prepared with a lemon to break the taste. The whole process took about a half hour. And they put in 2 bags of cells. Middle of the second bag everyone in the room but me noted that they could smell the cream corn. I never did notice the smell. My mom did for about 2 days. Trina commented that she thought it smelled "nice." I know its rather anti-climatic after all I wrote in previous emails.

My sister and brother replaced my mom on errand duty on Saturday aug 13th. We basically watch movies, argued and made fun of Dad. Which is just like our Thanksgiving routine. It was really great to have them around. This is where my week started to pick up. Things flew by from here, starting with lots of visitors all weekend. This trend continued almost to the day I left. It's amazing how nice it is to get different visitors when you’re in the hospital.

Arlo's Bday Things started to take a turn on Weds Aug 17th. My counts finally had bottomed out. Meaning my WBC had gone to zero along with other blood related items. This happens to everyone. Also needed my platelets to be transfused. This is similar to the stem cell replacement but without the smell and the bag looks like a bag of pee. This happened around midday.

I started to shake around 6 pm and could not stay warm. This is the exact same thing that happened when my line got infected the first time. I was really pissed and scared. The nurse came and let me know that this was not unusually since I had zero WBC. They called it a Neutrapinic(sp?) Fever. Since I have no immune system it is not uncommon to run a fever even though I might not have an infection. They ran blood cultures right away. I was better in about an hour. I actually never spiked a fever here. My Siblings left in the Evening after I was feeling much better.

The next day I was not feeling great. I had to be transfused with Red bloods for the first time around. Also started my Neupogen shots this day. The goal being to help my body produce WBC. I started to shake again around 5:30pm. This time I did run a 103 fever. This was the start of a on again off again fever that ran until Sunday morning. Zach came in around noon stay until Sunday. I was not very social during this time but it was great to have him run around. He even was able to beat a video game while visiting. Just like old times, except for the hospital room and me uncontrollably shaking.

I know this will sound weird but the fever was a nice change of pace. It didn't really d any damage (as far as I know). And I had an excuse not to walk the halls Plus it really felt like I slept/hallucinated though the whole thing. So when Sunday came around it was like I miss 4 days. (maybe next time they can put me in a Coma and I will come out right at the end.)

Somewhere in here I started to lose my hair. I had already lost all my body hair from my shoulders down. Zach shaved my head on Saturday and gave me a 15 minute Mohawk.

Sunday was a surprise day. My counts Shot up. From .1 to 1.7 mil. This was the most the nurse had ever seen. Even the doctor told me that if it was not for the previous fever he would have let me go Monday afternoon. That was great news! Also the Blood cultures hadn’t grown anything, meaning no infections.

Arlo's BdayThe next couple days were hard because of the promise to let go earlier. If they had let me go on Monday it would have been the earliest they ever have. On what they call day +10. (10 days after thee stem cells are back in.) For the rest of my life I will be + something days to the BMT doctors. On Monday they told me if I did not get a fever I might be able to be out on tues. Tuesday came and they told I had to wait another day. This sent me into a rather foul mood. I think the real issue was they were unprepared to do all the paperwork because of the weekend and quick recovery.

On Weds aug 24th I was released around noon. I had already sent everything in the room down the night before with my dad. As soon as they said go I was out! I had to wear my mask to the hospital doors. I took it off when I got outside and sat on the grass and cried. I felt like I was being released from prison. I did not think it would be such a big deal but it was. I was more affected than I had imagined I would.

The hospital discharge was rather anticlimactic. They really did not go over anything. They said no grapes, sushi, uncooked meat, and avoid crowds. If you have to be around crowds wear the mask. Also wear the mask at the hospital. Other than that don't really need the mask for most things. If you get sick call right way. Here are your meds see you on Friday. Bam! Done!

Arlo's BdayThe first thing I did was get something to eat with Jon Fuller and my dad at the Park Cafe. A Sweet BLT if you must know. I instantly felt better. I lost the dull headache that was in the back of my head for the past two weeks. Karla and dad took me to a nice dinner at Cafe Oasis which was another lovely meal. I felt great all day with no issues. It was really great to sleep in a real bed last night. I'm back in the basement of Dasch and Megs. It was also nice to hang out with the dogs even if they are not Lulu. I slept great last night.

Today I woke up sore. I think this is from the walking I did yesterday. Which is not that much but A LOT more than I have been doing. I also could be from walking up and down the stairs. I can also feel that I get short of breath easily. Other than that I feel really good.

Just being out of the hospital is healthier for you.

Thank you to all my great friends that stopped by. So Thank you, Red, Kirsten, Eric, Gretchen, Jon, Jen, Robyn, Amber, Silas, Sarah, Katie, Krysta, Ryanne, Zach, Meg, Dasch, JT, Rory, David, Tony, Trina, David, Thatcher, Kelley, Pierson, Colin, Kirsten, Elijah, Dave, Jenny, Dad, Obe, Emma and Mo. God I hope I did not miss anyone.

Special thanks for Karla, Janet, Erika, and Sally for sending me letters in the mail. A special thank to Sally who sent a wonderful care package with a variety of items. Crayons, gum, clapping monkey, monkey riding a horse, and yep a stuffed animal monkey. Not sure why all the monkey stuff but loved it anyway. Also received a postcard from Dasch and Annie, which was mailed from the bottom of the Grand Canyon.

I have started a list of things I HATE about the hospital. That will probably go out at the end. But here is a sneak preview.

  • FOOD! You just can’t eat this crap. Plus they always screw up the order. It's cold, over cooked, dry, bland. Want me to go on?
  • Hot water: the shower is just not hot enough. I know that sounds trivial but when I'm sick I just love a super hot shower. It's luke warm at best. It's really unsatisfying.
  • Middle of the Night check ins: There is no unbroken sleep in the hospital. The nurses come in every couple of hours and check you vitals, and such. It gets really annoying towards the end.

There are also wonderful things about the hospital.

  • Top is the nurses. Almost all of them are wonderful. Some are better than others but for the most part they were all amazing. Very upbeat, fun, and informative. They really know what’s going on and can anticipate problems before they come around.
  • All the visitors. It was really great to meet with friends some I hadn’t talked to in 8+ years!
  • You have a person that cleans your room for you. I always wanted that. And they make your bed. Ok I'm stretching here. There really is not that many things that are great about being in the hospital.

MY TIMELINE: So things are really unsettled. I have some complaints about the looseness of how I was released and I never saw my coordinator the entire time I was in the hospital. Shit Doctor Prystas came by to check on me and she is way busier. Anyway. Here is what I know.

Tomorrow I go in for a blood draw and an "are you eating drinking at home and not picking your nose" Q&A session.

On Tuesday the 30th I will go into have my lines removed. They are afraid of infection.

On Wednesday the 31st I meet with dr. Thompson the dr. that does the radiation. About the 2nd BMT. I'm not sure if I have mentioned this but the second BMT is a different regiment. It's 3 days of full body intense ration and 3 days of Chemo. So Weds will be a big day into me deciding if I will do the second BMT.

I Plan to going home from around sept2- 26th or so depending on a variety of things This is a bit earlier than the drs want but I really don't care at this point. If I get sick in-between then I will stay. If not I'm home.

I do have to come back up for a CT scan on the 12. The drs don't think it is appropriate to keep doing PET scans. All that radioactive sugar and such. This is going to be the scariest test I have ever taken. If the results are not completely clear of cancer I will not live more than 5 years. On good news I wouldn’t need to do a second BMT because it would be pointless. Needless to say I really really want this one to be clear.

Sept 26th would be day +46 and the start of second BMT if I choose to do it.

If you were looking for more emotion I guess I will put that at the end here.

I really am ecstatic to be out, a lot more than I really thought I was going to be. Its going to be really hard to go back in. I also feel very….lost. I guess would be the word.

I just want to be home.

I want my life to be back to "normal." This whole journey has been fun, interesting, tough and rather good for me in so many different was. But. Now. I am Over it.

I am really grateful for Dasch and Meg letting me stay here and it is a huge burden off my back. But All I can think about is going home. Starting work, getting a beer at the Brewery, working on my house, sleeping in my bed, playing card games with my friends, driving through the mountains, Driving out to Grand View Point, Moonlight hike to Delicate, floating the Daily, watching the sunset over the portal from my backyard ...blah blah to many things to keep going on.

I just want to be home.

That is why I planning on going home a little earlier. I'm really hoping that the 3weeks or so at home will help ease my thirst for being home enough to make the return trip not so bad.

There it is way long and way blah.

I will give a short update next week to let you know about going home, and details on the 2nd BMT.

Thank you all for your support. It was more important in the last couple weeks than it has ever been.

Thank you, Arlo

Tags:

Arlo's Cancer Story