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Emotional Roller Coaster

by arlo tejada 18. January 2013 16:53

The Emotional Roller Coaster

Arlo tejadaHello Everyone,

I notice I don't write very much when things are going well. And seem to write all the time when things are not as good. So hopefully I won't write very much in the future. This email might be a bit self reflective and sad but that's not what I meant. Most my writings are factual and full of statistics. People have been asking more about my emotions and since these have usally been under the heading of "I feel fine and I'm not really worried about" I have not really put much into it. This blog entry has more emotion than normal. (so prepare yourself.)

I've been having a rather up and down couple of weeks. These days I've been feeling so good (physically) I'm more worried about dying of boredom than...well...the cancer. When the Chemo was hard I would loss 5 days at a time. Now I'm ready to do something a couple hours afterward. This is not an issue I hear from most chemo patients. Hell my hair is growing like wild fire.

Arlo's Bday My week from July 5-15 was pretty damn good. So here is the run down.

On Tuesday July 5th I was able to collect all my stem cells in one day. It is very rare for people to collect in one day, less than 10%. And because the doctors want to do a double BMT they had to collect a lot more than usual. I needed 10 million stem cells and I was able to get 12.7! Ok so I really had nothing to do with all this good news. But I'm hoping it's a sign of things to come.

On July 9th I went to my first "city" activity, the Salt Lake Jazz festival, with David Everitt and Jt. It turns out I can only handle a couple of hours of Jazz at one time.

On Sunday July 10th I was able to escape to the mountains with David and Trina Terrion (I know I have at least 4 really good friends named David (no more please)). We spent the time next to the Weber River and all I could think about was getting my Minime out and rafting it.

I started what hopes to be my last outpatient chemo on July 11th. This went even better than the last one. I had no issues at all. As I mentioned already. The biggest issue with doing chemo in the hospital is the time it takes. It is so much longer than at the primary oncologist office. I got out of the hospital at around 5pm after arriving at 10am. The drugs only take 2 hours to administer.

I meet with Dr. Prystas on July 14. I wanted to get her opinion on doing a double BMT vs. a single. This meeting did not go as I thought. She did not have a ton of information but did breakdown the statistics of several studies the BMT doc are citing along with reoccurrence rates of leukemia's and non-hodkins lymphomas from patients that had hodkins. Along with the risks of more Chemo. This was helpful and basically made it look like the double BMT is the way to go (by the numbers.) The hard part for me was the emotion she showed. She was very apologetic and on the verge of tears several times in our hour+ long talk. I got the impression she rarely has patients that don't respond well to treatments. It also was not very confidence building for me. If my doctor is this worried about me maybe I missing something. She did promise to visit me in the hospital. She is really wonderful and I highly recommend her (though I hope none of you have to meet her.)

So my sadness did not last long. I meet up with my new friend Robyn who "kidnapped" me for the afternoon. We went up Big Cottonwood canyon to check out the Solitude Disc Golf park (which was not open but is now!) It was also great to hike (ok only little walks) along the creek, which is raging right now. This is how easy this chemo was two day after I'm walking around the mountains like I'm normal. It was a very nice escape. I'm accepting kidnappers for the next two weeks at least. (better move fast because space is going quickly.)

The following week was not as good.

Now my weekend was terribly boring. I expected to be sick so I did not plan anything. By Sunday I think I was going crazy and promised myself if I have another weekend like that I am leaving town and finding something to do. I blame this on all my friends that went on the San Juan River and took all my SLC friends with them. Yes this is your fault John Geiger, so you better come visit here in SLC to make up for that.

On Monday I had part "b" of the chemo. Things went smoother and it only took 5 hours or so. And again I felt great. My friend Rachel, tired of hearing me bitch about being bored, took me out for a dinner of nachos and a movie.

Arlo's BdayOn Tuesday was not as great. I got a phone call from a BMT nurse. Rachel (the BMT nurse) "Arlo I hate to be the bearer of bad news" Rachel always seems to be the nurse that calls when something is wrong. Maybe it's because she has a very soothing phone voice. I was racking my brains because I had no idea what could be wrong. Me "what is wrong" Rachel "We have to take your line out, it's infected with something really bad. The blood cultures grew out already." (It turned out to be staph infection in two lines and strep in another.)

An hour later I was on the operation table having my line removed. This process is a bit odd. They give you very minor local numbing agent. Then they tug and pull on the line. Which I could feel moving in my veins. Very odd sensation. Because my line had only been in for a month or so they thought it would come out really easy. Well it did not. "you're a very good healer" was the ironic quote from the doctor as he is tearing (probably an exaggeration) on my line. This doc must have thought he was a comedian because he also made a joke about the line being "tied to my toes." I told him to stick to his day job.

I meet with the PA afterward and the discussion was about whether to add a different line or to move to an oral antibiotic. They decided on an Oral antibiotic. Which means I am now line less. And probably will stay that way until I get admitted for the BMT. They then took blood cultures from my veins. This will determine my next course. If nothing grows from the blood cultures then we are on as planned. (It has been three days and nothing is growing.) If something does grow then I will most likely have to do 6 weeks of antibiotics. And probably more "maintenance chemo" and then onto the BMT...maybe.

With all this fun to absorb I went home. I had probably my biggest melt down since the beginning of this journey. As I have told many of friends throughout this I'm not really scared or worried about death. That is going to happen at some point. It's not that I want to die. But when I'm dead what do I care...I'm dead.(probably not the most religious view) I'm more concerned for my friends and family. If I'm going to die I feel bad that you and I won't be able to share the awesome experiences that have enriched our lives already. Because lets be honest I'm pretty awesome. I feel this is harder on all of you then me. I can hear it in my mom voice or see it in Silas' eyes. I know if things were switched I would be having a very hard time myself.

Ok so back to the melt down part. I never ask why me. But I feel things just keep stacking up in what is supposed to be an "easy" Cancer. I think a major part of my frustration right now is the fact that I feel so good. Probably the best I have in almost two years. And that I'm stuck in SLC waiting, waiting, waiting. Tuesday evening was probably the most I've wanted to kill a bottle of Maker's Mark in a while. (Or that might have been from all the country music I was listen)

t's hard to keep me down for long. I started feeling better the next day. Though talking to my roommate Megan about how much fun the San Juan was did not exactly make me feel better. But I do love good stories and she had plenty.

I also got the official word that Medicaid approved both Bone Marrow Transplants.

Ok enough of my emotions. Back to the details. My timeline is now very much in flux. I'm still hoping to get a PET scan next week and then move into the hospital the week after that. Assuming my blood cultures don't turn up any thing new.

I'm also concerned about the collected stem cells went through an infected line. The nurses have reassured me that the labs test for that. But I want to hear that from the doc. Just before sending this I heard from my coordinator that everything is good with the stems cells. So no more collecting from me!

I hope I did not make anyone sad. Thank you for all your support and love. Next blog will be more to the point...what ever that is.

Love Arlo


Arlo's Cancer Story

A Sad birthday

by arlo tejada 18. January 2013 16:52

Arlo tejadaHello Everyone, I can tell from the emails and phone calls that it’s been way too long since I have sent out an update. So here is what has happened in the Month of June for me.

I started another round of Chemo on June 9th. This was Gemcitabine. It comes in two parts, kind of an A and a B. They gave me 3 chemos on June 9th. It took a long time about 8hrs because they had to do blood work and the pharmacy was really slow getting the drugs put together. I came in the next day for fluids. Overall the experience was really easy and I felt great by Monday. No Nausea or any real issues. I did have a little bit of trouble eating Thursday and Friday but not bad.

By Monday I was fine. I was able to get out and play some disc golf with my friend Zach. My lymph under my arm also shrank a ton in just a couple of days. Which was very encouraging. Finally some good news.

Arlo Disc Golfing

I also had my 31st birthday on Wednesday June 15th. My dad, brother and Karla came up for a BBQ with all my SLC friends. The next day I went in for the part B of Chemo. This was probably the easy Chemo I have had so far. (words I never wanted to say) Either I’m really getting used to this or it was fake. I don’t think it was fake because my Lymph has shrunk to basically nothing.

In a highlight of my last three months I was able to go home for the weekend of June 24th. It was absolutely amazing to be home and see many of my friends. I can’t say it was relaxing because it was running from one event to another all weekend long. But it was a blast. It was really hard to come back to SLC after all the reminders of why I love Moab so much. It was also wonderful to make it while the rivers where still raging even if I was unable to get on them.

Arlo's Bday I meet with the doctor on friday July 1st to go over the results of the recent test. The PET scan shows a little improvement. The brightness in my left arm pit went from 15 to 13 which is good but not great. My lymph in my chest went from 4 to 2. Good but not great. The MRI showed that the blood clot in my heart had shrunk.(yea no open heart surgery!) It also shows a possible blood clot on my central line. They may have to take out this line and inset another, which would be my third in case you are counting.

I started the collection process today. Which means I get a shot of neupogen everyday to increase the white blood cell count. On Tuesday I will start the collection process at 8am. It will take about 4 hours to collect. The blood is cycled from my body through a machine that separates out the stem cells. Then it pumps the blood back in my body. We are going for 10 million stems cells which is double what they need just incase we have to do a second BMT. Which is what the doctor is currently recommending.(more on that in a later email) It could take up to 5 days to get all the stem cells and then another 5-10 days to process and clean the stem cells.

I will do another round of the Gemcitabine starting on July 11th. This is mostly to maintain more than to “cure” the cancer. After the three week recovery they will move right into the High Dose chemo. I will get into the details of the 2nd BMT once we get closer. I’ve been told that my blogs are too detailed with too much information.

SO this means I’m finally officially apart of the Bone Marrow Clinic. It means I should be moving out of the basement to the hospital in the next 4 weeks.

It also means I’m looking at not being back in Moab until Sept if I do just a single BMT if I do a double I might be able to be home for a week or so before coming back to do the second which would put my full time back in Moab at around late Oct.



Arlo's Cancer Story

Getting to the BMT

by arlo tejada 18. January 2013 16:50

Arlo TejadaJust getting to the bone marrow transplant is proving to be harder than I thought. On Monday May 23rd I had my central lines removed. It was a rather easy process, they just clip a little skin and pull the line straight out. I was amazed at how long the line was, it was close to 10 inches long. On Thursday May 26th I had new lines insert on the other side. Which I guess is a bit harder of a process. They also released me from the hospital after the operation. I had terrible neck pain this evening and had trouble sleeping. It was much better the next day. I also went home with an antibiotics regiment. This required me to insert a vial of antibiotics every morning into my lines. This scares the crap out of me since my last line was messed up.

As a whole the weekend went great I could feel my energy and motivation coming back finally.On Monday May 30th I woke up to a tight chest. It felt like my ribs were to small for my lungs. Every time I took a deep breath it hurt. It was not terribly painfully just uncomfortable. I went in on Tuesday to have some tests run. This turned into quite an ordeal. First they just wanted to run some blood cultures to see if I had any bugs  in me. Then that turned into a chest X-ray. They found uncertain spots on my lungs which lead to a CT scan. The CT scan showed that I had blood clots in my lungs. These most likely came from the removal of the line. The issue with the clots (besides their size about 2 cm) was that they are infected. This is most likely the issue that is causing my chest pain. The doctors decided not to admit me and send me home with very powerful blood thinners and stay with the antibiotics I was on. They also wanted me to come in at 9am to get more tests. The next morning I was feeling better but still could feel the tightness if I took a deep breath. It was decided that I should get my scheduled pet scan done down at the massive Intermountain Medical Center south of Salt Lake. This test determines how metabolically active my cancer is. I also had another CT scan done. Which I hate. This is the test that makes you feel like you pissed your pants. At the end of all this it was about 1pm. I was ready for lunch because I had not eaten since 10pm the night before and I was starving. But my day was not over. The BMT Clinic called and wanted me to get an echo EET or TEE something like that. All I knew was that it was a test on the heart. After an unbelievable run around I

 found the location I was supposed to be at around 2:30. This tested turn out to be a lot more invasive than I had thought. It was not the ultrasound type test. This was a test where the dr sticks a tube down my throat and takes pictures of my heart. This caught me of guard. The nurse let me know that I would also need a ride home. This was given to me minutes before the test was to be preformed. Luckily I was able to get a hold of Trina and she was able to come down. I don't remember much of the test itself. They gave me a drug that gave me short term memory loss. I never was put to sleep but when I came too I barely remembered any of it. My throat was not sore afterward and felt fine.

Trina took me back to the LDS hospital. Once we got there I meet with the doctors right away. They had the results of the tests already. The PET scan was not as 

good as I had hoped. In fact it was worse than my last one. My left lymph node in my arm pit went from 9.5 to 12.8 in "brightness" and the lymph in my chest went from 2 to 4. The doctors said this also could be because my body is fighting an infection which makes the lymph system work more. I don't think this is the case since my lymph in under my left arm is growing like it did before.

The other tests also had some very bad news. The real issue is that I have something stuck to the inside of my heart. At the time they did not know what it was but it raised very big concerns. It could be a blood clot, bacteria, or more Hodgkin's. This now became the number one issue, even over the cancer. To make things even worse the blood cultures taken on Tuesday can up positive for something. That meant my new line was infected with a new different bug. With all these issues arising they decided to admit me to the hospital on Wednesday June 1.

Friends of arlo

I had an MRI done on Thursday June 2. Which is a terrible test. Takes about an hour inside a tiny tube with some mechanical voice telling you when to breath and not. From this test they found out that the thing in my heart is just a blood clot, not infected. Which is a big deal. If it was infected I would most likely have to have full on open heart surgery. Chest scar and everything. With the clot most likely not being infected I just have to be on blood thinners. BIG difference! The blood thinners should help shrink the blood clot which is important because it's a big clot at 2 cm. This also changes the priority back to the cancer. Though the infection in the line and in the lungs is still a big deal.

The plan is in constant motion now. I have had several infectious disease doctors, the cardiologists, a radiologist, and the BMT doctors coming by each day. Plus all the PA's that come to tell me the plan. It seems like they have every doc in the hospital working on different parts of my case. All these different minds mean lots of different plans and ideas.

They have found out what was in my line and now can attack it with a specific antibiotic. It's not a very nasty bug and can be taken care of quickly with the same drug that will work on my chest blood clots. Also my chest issue has gone away.

The new bad news leads to a more likelihood that I will have to do a double BMT(not the sandwich). This means I will have the main BMT of 4 weeks or so then some time off to let me body recover, probably about 2-4 weeks. Then come back for another BMT and radiation at the same period. This may make my return to Moab sometime around August now, which is terribly sad. It would also exte

nd my recovery time which means that I might have my first year without a river trip since I was 4 years old. This will sound like a movie but studies show that a double BMT raises full long term remission from about 30% to 55%. Of course there could be other issues from so much chemo in ones body.

I am really, really happy to have Medicaid now also. Because this obviously will double the costs plus all these extra hospital stays can't be cheap. The fundraising was amazing but asking for $200,000 might be a little bit much.

View from the hospitalI did have a very fun night on Thursday with several friends coming over to watch the NBA finals. I have a very nice room, even better then last time with more room and a great view of the mountains. (I felt like I had to put in a happy paragraph.)

Overall I'm feeling very good physically. Emotionally I'm much better today, (even with that ass whooping Spain put on the USA in soccer) compared to Wednesday evening. There for a little bit I was wondering if I would ever get some sort of good news. I mean open heart surgery just to GET to the bone marrow transplant. At this point I'm really not worried about what the BMT will be like I just want to get to the process because then I know I'm moving forward.

I was released on Monday from the hospital. I'm feeling great and was able to get my first "exercise" in months by playing some disc golf in Salt Lake on Tuesday.

My timeline (always the issue) is a little more concrete. I'm doing another round of chemo on Thursday, June 7th. This will be outpatient. The chemo is different than the others that I have taken so far. I can't remember the names but one sounded like Jim blah blah oside. The plan is to do the chemo and take a PET scan as soon as my white blood cell counts recover. The idea being to knock down the cancer and then collect my stem cells right away.

SO I should be collecting stem cells in two weeks or so. I think I have written that three or four times now. I feel good about this one being the really one. Thanks for all the emails. I hope to get too respond tomorrow or so.



Arlo's Cancer Story

ICE chemo

by arlo tejada 18. January 2013 16:49

Hello Everyone,

I did my third and final round of Ice chemo on May 4-6. Everything went as well as can be excepted. The chemo is starting to add up. I have been very tired for the past couple of weeks. This is leading me to be super bored of being in the basement.

On the 12th I had a dentist appointment to see if I had cavities or other issues that could come up while my immune system is low. It turns out I have to get a root canal under my bridge. The root probably died not long after my car accident in 2002. I'm not really sure why none of my other dentists have caught this in 9 years.

I also had a psychological test on the 12th to see if I could handle the BMT. It was really a stupid test that asked questions about having nightmares and stress.

Picasa Photos I had some good friends visit from Moab and was able to hang out with them for hours. My Mom also arrived on May 14th for a big meeting with the BMT team on Tuesday the 17th. This meting helped answer our detailed questions we had and gave us a better timeline. The meeting was very informative and really help give us a clearer picture of what was going to happen in the upcoming weeks. My timeline changed again since the meeting but I'll go over that in a second.

My dad also brought my dog up for the day which was great. Even though I was exhausted and it was raining I still got to throw the ball with Lulu for a bit.

On Wednesday May 10th I had my root canal done. It was really easy and took about 20 minutes. I was surprised how easy it was.

On Friday May 20th I had a big day scheduled with a battery of test. It started with lung and heart tests. Then more blood tests. Last was the Bone Marrow Biopsy. I was really not looking forward to this. Especially after having made the mistake of watching a youtube video of the procedure beforehand. The overall process was not terrible, though.

With FriendsThe issue was afterwards. About 10 minutes after the process was over I started to shake uncontrollably. This was the fourth time this has happen to me. My fever also started to rise. This really freaked out the medical staff. When my fever hit 105 they decide I needed to stay a couple of days in the hospital. The shakes and spikes in fevers always happen after my line was flushed. This made the doctors think that there was some sort of bacteria in my lines.

I was brought to the BMT rooms instead of the ER which is great. It's a private room and is rather comfortable. My fever did not drop for a while. The nurses where in my room for most of the night checking on me.

My sister also flew in for the weekend. Unfortunately for her, we spent the entire time in the hospital watching movies and TV. It was great to have her around though. She picked up several items from the house for me and brought me dinner and snacks. The food in the hospital is terrible, seriously who brings a hamburger without ketchup?

On a good note the room does have a tv which means I can watch the NBA and NHL playoffs. I don't mind being in the hospital. The room is probably bigger then the room I'm in at Meg and Dasch's. And they make my bed every time I shower. Though the nurses come in at 3am and 5 am to change the antibiotics. I feel like the entire week was just a test run for when I'm in there for the BMT.

They found something "very nasty" in my lines. The disease was something I could not even spell if the doctor wrote it down for me. (Serratia Liquifaciens) The doctors decided to take out the lines on Tuesday May 24th. Then I will have to stay on antibiotics for the next 14 days. They put in new lines on the other side on Thursday May 26th and I was able to go "home" later that afternoon. I'm still on antibiotics. Which I have to administer myself each day at 10am.

All of this means my schedule has moved back a week. So as of now I start my collection on June 3rd and will most likely start in the hospital around June 15th (my 31st birthday).

Medicaid Approval

The big news is that I have been approved for Medicaid. Which is unbelievable to me. This means we don't have to put down the $85K deposit. It's still a little unclear exactly how much is covered with the Medicaid program I'm on, but it is anywhere from 100% to 90%. I still have all my past bills which right now are about $40K+. Luckily the fundraising has been so wonderful I will be able to cover these. The fund is somewhere in the 60K+ range and that does not include the Caner Free Arlo event in Moab. This is a huge relief and is really nice not to have to worry about finances anymore.

Thank you all for your great support. Especially all those that worked so hard on the event in Moab. I wish I could have been there though I'm not sure I could have handled it emotionally.


Arlo's Cancer Story

A quick note

by arlo tejada 18. January 2013 16:45

My scan on Monday was good but not perfect. The "brightness" of all the lymph nodes had deceased. That means how metabolically active the disease is. The brighter the more active it is i.e. likely to spread. The lymph nodes in my left shoulder and neck disappeared. There also was no new cancer activity. Which is good.

The lymph's node under my arm did grow in size (though less active). There are several reasons this could happen, the main one being that as the cancer cells die it can inflame the lymph nodes. They are going to want to radiate this section after the BMT to be sure all the cancer is dead in the lymph nodes. This means I will have to do another round of ICE chemo starting tomorrow. This is not uncommon but they don't want to do more than 3 rounds. I'm not excited about this but if it improves my chances of recovery then I'm all for it.

On other news: I meet with the BMT team and got a better understanding of what the process looks like going forward. There are a lot of "if the tests show this then we will start this"

I still have to:

  • Get a Bone Marrow Biopsy
  • Major Blood Work (drugs, Alcohol, nicotine, random blood diseases)
  • Tests on my heart, and lungs
  • A full dental work (cavities can cause infections)
  • Some sort of psychological test. To see if I can handle the BMT. (I don't know how they could fail anyone.
  • You're not psychologically fit for this treatment you will be better dying)
  • Stem Cell Prep
  • Stem Cell Collection
  • BEAM Chemo
  • Stem Cell Replacement
  • 4-6 weeks in the hospital.
  • 2 weeks with a caregiver watching me.
  • Done?

That is about all for now. In other good news the "official" deposit if Medicaid does not come through will be $85000. We will be reimbursed for what ever the insurances company pays.

Thank you, Arlo


Arlo's Cancer Story

Up to SLC

by arlo tejada 18. January 2013 16:40

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Arlo's Cancer Story

Life is Good

by arlo tejada 18. January 2013 16:40

Life is Good

Here is my latest update on my treatment in Salt Lake

Arlo Tejada I have been feeling really good about my entire situation. Though I basically live in a cave and don't get out much I feel very loved and supported. I have to be honest it really feels like things are going great for me. This will sound crazy to most of you but I am having a blast right now. I don't get a lot of time out but when I do I have had a lot of fun and enjoy it so much.

I have had friends visit from Portland, Moab and New Hampshire. I have been to Soccer Games and baseball games. My new highlight is going to the Coffee Garden on 9th and 9th in the afternoon and watching the crazy outfits people are wearing these days. (does that make me sound old?) I only get out every other day and usually only for a couple of hours because I get tired easily.

The last round of ICE started on April 20. This went quickly and easily. No issues at all. The next day I had the 3 Chemo's first the Etoposide, then the Carboplatin and finally the backpack with the Ifosfamide. The place in the hospital that I get the backpack is called "infusion." They have been far from impressive to me so far. I have had to wait for the backpack both times and they just don't seem to know what is going on.

Arlo Tejada I got my backpack around 1pm and headed home. I received a phone call around 5:30pm from the hospital that they had forgot to put some of the drugs in my bag and need me to bring the bag back and wait for them to fix the problem. I'm not usually a very angry person but I did get rather pissed about this. I told them to come pick up the bag themselves, fix it, and bring it back in not so polite terms(which is very much not how I do things.) They did. I ended up getting the backpack back around 8:30. this messed with the entire 24 hour thing so they basically had to speed up the input.

The last day I got the final installment and again had to wait for infusion to get their shit together. My friend Dave took me home and we hung out for a while. He was monitoring me to see how I was compared to my crazy night the last time. This went well. Lots of bathroom breaks through out the evening I think I counted 15. But I was able to eat and drink.

On Saturday I felt good, not great. I was able to eat breakfast and read the paper. The biggest shock to the system was that my hair started to fall out. I had a friend come over and buzz off the rest of my hair. It's really not as bad as thought it was going to be.

As a whole the weekend went well. I ate regularly and drank a lot. The experience was very similar to my earlier chemo's with each day better than the last.

Arlo TejadaMonday I was probably the roughest day of the past two weeks. I could not get out of bed almost all day. It was like a weight was on me and I just laid there. I pretty much slept the whole day and night and felt better on Tuesday. Each day is a new adventure.

My schedule for the future looks to be determined tomorrow. I get my PET and CT scan then. This will decide the next move. If the scan is clear then I start the bone marrow harvest which takes 10-14 days which does not send me hospital for 2 weeks. If it is not clear the answers are a little fuzzy. I may do another round of ICE or start bone marrow any way. Depends on what the drs from BMT and dr. Prystas decided is the best course. This most likely will lead to me being in the hospital in 4 weeks or so.

I will send out a short one tomorrow or Tuesday to give the update on PET/CT scan. Thank you everyone for all your support. Arlo


Arlo's Cancer Story

Thank you!

by arlo tejada 18. January 2013 16:38

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


Arlo's Cancer Story

Insurance and such

by arlo tejada 18. January 2013 16:36

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

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

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


Arlo's Cancer Story

Not so Good News

by arlo tejada 18. January 2013 16:32

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

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

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

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

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

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

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

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

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

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