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It's on Like Donkey Kong

by arlo tejada 18. January 2013 16:59

Hi,

Arlo's BdayThe first part of the final part is finally in Sight. As I write this I am in the hospital waiting for the chemo, which will be here in 3 hours or so.

The past little while has been a real blast. I have seen a ton of people and been rather busy which has kept my mind of the BMT. I went to an MLS soccer game on Saturday with Rory, Sean and JT. Which is funny since none of these friends had ever met each other. The game was a ton of fun even though we lost.

On Sunday, part time SGRE guide and long time friend Markus stopped by. We went to Cowboys and Aliens (which is sweet, Harrison Ford and Daniel Craig are amazing!) sometimes this seems like a movie review more than a cancer blog.

I also took my roommates out for a really nice dinner at Pago. They won’t take any money so I can at least buy them some dinners.

On Monday I had a meeting with a needle and about a pint of blood. I could not believe how much blood they took from me. The BMT clinic is running tons of tests to make sure I don’t have any hidden issues that might be fatal when I have no immune system.

This was a busy day socially. I meet up with Jon Fuller for lunch and he gave me 30 Gigabytes of video from highwater this year. Since I have 4 weeks of hanging out in the hospital might as well edit a video for the fall company party.

Arlo's Bday Afterward I meet up with Janie. She took me out to her house to feed the goats. One of the little bastards rammed me in the knee (Yes I’m ok, but not a goat fan now). We also caught dinner at what she called the best Asian place in SLC “Pho.” It was not bad even if it was on the Westside.

My father also made it up to help pack and move me into the hospital. On Tuesday we meet with the PA. Who went over the last details and explained the last tests and what to except for the future BMT. The most interesting part of this was that I will smell like cream corn for a couple of day after the stems cells are placed back in my body. So he suggested not having ladies come by during that period. (Aug 11-15 in case you wanted to know) I think this is hilarious and gross. I guess it could be worse like dog shit. Or in my case sage (I hate the smell of sage….and for all my dessert friends that are going to give me shit for that, I’m just being honest.) But really after 6 days of intense chemo am I really going to care? I think all smells will be bad.

Later I meet up with Ariel ,(who’s brother Kalen needs to come visit) for coffee and some great stories. I also met up with Kate, a friend from Fort Collins for lunch. Tons of people are in town for the outdoor retailer show and my hospital visits are going to be great for the first little while.

All these meet ups are why I’m so stoked about my cancer journey so far. (I might have written that last time also)

My Mom made it in on Wednesday. We had our big meeting with the doc about all the details and what to expect. We also went and picked out my room. Yes I was a little pushy trying the get the best one out there. Since I have seen three rooms I wanted a big one with a view and that is what I got. Yep overlooks the temple (and Downtown SLC) in case you want to come visit.

For my last time out I went to my new favorite coffee shop “Coffee Noir.” which is also where I wrote most of my updates. I then took out Dave and Trina Terrion, Megan and Dash along with dad and mom to dinner. We went to a really nice restaurant called Niche right down the street.

After dinner I finished packing up in the basement. This was really hard and emotional for me. I think I cried the whole time. Luckily I only had a couple of bags to pack. It was also very difficult to say bye to Dash and Meg. I did hold it together but just barely.

Ok so I know you are all waiting for this part: MY new location. for 4 weeks or so……Drum roll…..

E803, LDS Hospital, 8th ave and C street, SLC UT, 84143.

I wrote most of this before going into the hospital. Now that I’m here I’ll let you know how my day has gone.

I woke up at 6am and probably got about 4 hours of sleep. Yep I’ll admit it I was super nervous. (that and I’m addicted to an Avengers cartoon on Netflix, I just keep watching.)

I made it to the hospital at 7. We hung out for about an hour and then they put in my new line. I was rather loopy afterward. So those that received weird texts from me from around 9am to 11am or so today, that is my excuse.

I was moved to my new room around 11:30. I moved all the room around to have my best setup. It looks like norad in here. 2 computers, digital photo frame, 2 tvs, an xbox, Ipad, Ipod. I’m not going to be bored from lack of technology.

I have started a whole new regiment of antibiotics. Very powerful ones. They also have me on 8 or so pills from anti-shingles pills to a multi vitamin. They also are recording every thing in and out. Including #2’s (yes they are measuring and analysis it) Something along the lines of me opening the door and yelling “You have to come check this one out!” comes to mind.

Zach and Katie stopped by to say hi on their way back to Moab. They are excited to come back just to smell the cream corn phase. Classic

I will get the first line of chemo around 5pm. The first set of chemo is called Carmustine. It is a hard chemo on people that don’t drink alcohol. Ha I knew my college years were good for something.

The next 4 days of chemo are all the same with two types of chemo. The first is Etoposide which I had with the ICE. The second is Cytarabine.

The last day’s chemo is Melphalan.

Then a day of rest.

Then the stem cells are returned through what sounds like a fondue machine. They heat up the cells before returning them through my lines.

Then cream corn phase. I just can’t get over that. It has something to do with the liquid it’s stored in.

I’m supposed to be rather functional for the first week or so. Then crash and slowly recover. But I can have visitors at anytime.

Some other medical details/stuff.

  • They almost guarantee I will have to have a blood transfusion.
  • I will most likely be there for a total of 4 weeks.
  • Then 2 weeks in SLC with 24 hour home care. (which will be done by a rotation of friends and family)
  • Then 4-6 weeks off in which I might be in Moab!
  • Then they want me to do the 2nd BMT which is actually different chemo and FULL BODY radiation. (something I’m really not stoked about.)
  • This would be 2 times a day of radiation for three days and then 3 days of chemo and then the stem cell replacement.

This whole thing would have me back in Moab around the end of November. But still very weak for a long time.

There is my update. I don’t know when I will get a chance to write again. I will try and update facebook. But if I get to sick the updates might be really rare.

Tags:

Arlo's Cancer Story

Thank you’s and timelines

by arlo tejada 18. January 2013 16:56
Arlo's Bday

Hello,

Things are looking very good today. After a very nice week which was probably inspired by my rather sad email, I have great news. (but that will wait)

My last blog received the most responses I have had in a long time. Which I guess is not surprising since it was a rather rough and personal one. It took my mom several days to collect herself to respond. The emails were wonderful with lots of people expressing many memories and experiences together. They touched me in a very nice and personal way. Though that was not my intention I did appreciate it. I also have had a rush of friends visiting which WAS my intention.

On Friday July 23rd I went to a minor league baseball game with a lot of friends. Including The Terrions, Gretchen, JT, David, John and his family (Calling people out in updates works every time.) It was a lot of fun but I realized baseball is super boring when you're not drinking. Or it could have been the 14-0 score line in the 2nd inning. The fireworks show afterward was amazing and well worth the $8 ticket.

On Tuesday July 26 I spent several hours over coffee and great conversation with an old college friend, Carly, which put me in a wonderful mood for the day. A visit from Silas added to the good day and the beat down I gave him at pinball did not hurt my mood at all. This evening Meg, Dasch, Silas and I went to a really nice dinner to finish of a spectacular day.

I can't keep writing without expressing my appreciation for Megan and Dasch. I really can't articulate my gratitude to them enough. They have been SO, amazingly accommodating. They opened up there house and watched over me. They took the lodging issue right out of what was a stressfully and complicated situation for me. This allowed me so many freedoms: having friends over to help me, to be flexible during this process, and really just to concentrate on what I had to do to heal.

Arlo tejadaWhat I really appreciate more than the connivance was the friendship. Having worked and played with Dasch for years I knew his heart to genuine and kind. So it came as no surprise to experience his kindness and generosity on a regular bias. The man can cook, likes to share and always has wonderful conversations, though ridiculously intelligent and over my head. I had maybe spoken 10 words total to Megan before moving in down stairs for what was supposed to be a one month stay. 4 months later I feel I have made a great friend. Her kindness is a match for Dasch. I truly appreciated our conversations and looked forward to them even when I was feeling terrible. They almost made me want to have roommates again. The two make such wonderful pair, and have what I consider to be close to a perfect city life. They work very hard and make sure to play as often as possible.

I am so glad I to have spent my time here. I'm truly sad to be moving out and will look back fondly on my days here.

I'm really gratefully for the cancer and this journey. (I know that sounds odd) And I would put my time I spent on Norris Place at close to the top reason I don't mind having gotten cancer.

Ok that is the first of my thank you's. I will have others in the coming weeks, really there are hundreds I have to thank.

Back to the timeline.

On Thursday July 28 I had a bunch of tests done. I first had a heart scan done. The results came back that the blood clot in my heart had completely disappeared! This is one of those lucky to have discovered things. The blood clot was not related to the cancer but would have posed a serious health risk in the future. (cause I'm planning on for many years.)

I also had a PET Scan and a CT Scan done. The Pet came back with great news. The brightness level has drastically decreased in the left arm pit. From 14.2 to 5.6 which is the lowest it has been measure at. And no mention of the lymph in the middle of the chest which means that it is GONE! And no new sites! The size of the left lymph also have shrank from 3.4x2.1 to 2.5x1.5

The dr.s are very excited about the new test results. It's not exactly where they want it, but it's very close. This means very good things and we are officially moving forward.

This puts me in great sprits and I feel very confident about being successful from here on out. I am still very nervous about the high dose chemo and the recover but after so many delays I feel relived and excited. This means I am that much closer to getting home.

So the timeline is this.

  • Monday at 10:45 I will have more blood cultures done.
  • Tuesday they want to do another Bone Marrow Biopsy. (which I'm strongly against!)
  • Wednesday is the final meeting.
  • Thursday is the new line placement. And it's my choice to go straight in or wait a day. I think I will go straight in. (I wonder if I'm all hoped up on pain med from the new line placement will I fell anything from the Chemo…or will it be worse?)

SO we are finally a GO! As I was telling Dasch and Megan last night, Its kinds of a crazy feeling. I've been waiting for so long and then BAM it's here in less than week. It seems in a way so….sudden? I feel like I have so much to do still.

I will send out another blog with my new address at the hospital probably on Thursday or so. Oh and since this worked last time, I want people to visit while I'm in the hospital!


Many Thanks, Arlo

 

Tags:

Arlo's Cancer Story

Back Home

by arlo tejada 18. January 2013 16:54

Hello Everyone,

arlo and his momI can always tell it has been too long between updates when I start getting flooded with phone calls and emails. I can not believe it has been over two months since I left the hospital. In many ways I have forgot or not thought about the last 8 months and have really just focused on the week ahead in the best sort of way.

When things are going well I forget to write or don't think it's as important. It is also harder to write now that I am back to living life instead of living in the basement.

I think I might have put this off for so long because I need to make a ridiculously long thank you list and want to truly do it right. Which is intimidating. I might save that for post tests emails.

Anyway lets move to my timeline since I last wrote. I have to go all the way back to the beginning of November.

One of the great moments that sticks out in my mind is going to dinner at a local restaurant, the Peace Tree. At the end of the meal when the check came instead of a bill it was a piece of paper that read "Dinners on me, We are glad you are back in town and hope you recover quickly." It was really awe inspiring moment and made me feel that I had come home.

In a sadder moment. I also went to the wake of a local rafting legend Smitty on Nov 13th. Smitty was famous for running the local daily for days, or weeks on end. He was everyone's funny uncle that always had great stories and the best dirty jokes. He lived life his way and enjoyed everyday of it. Having stared at my own mortality for that past year and half, I was profoundly moved by his passing. Also the outpouring of support in a way he would have really love made me sad that when I do die I won't be around to share in the party. (though I do not plan that to be here for a long time)


I got sick for the last three weeks of November. Really not fun stuff. Snout, cough, flu like exhausted. It made me wonder if I was going to be sick for the rest of the winter. (Since I am writing months later I can say that I still have minor illness regularly but it is getting better everyday.)

arlo I went to SLC to finish up with some "focal radiation" starting on November 21. This is where they shoot radiation in a very specific spot. In my case it was under my left arm pit which has the swollen lymph. I went up for three days then came home for thanksgiving than went back up on the 28 for 5 more days. The focal radiation was a breeze. Which was a real relief since my last experience with radiation was not pleasant. So hopefully this was my last treatment but it was rather anti climatic. It took about 11 minutes from entering the hospital to leaving the hospital. And that was if I had to wait. Most of the time I showed up a little early and was out before my scheduled time. Wish everything was so efficient.

Thanksgiving was great. For the most part. It was so long ago, so I am putting a rosy tint on it. Now that think about it…it was hard. I was still sick and my appetite had not come back yet which really sucks at thanksgiving. It was great to see my family. But I could not spend a ton of time with them and spent most of it on the couch trying to recover.

The first week of December I flew to Reno for a rafting conference. I usually really enjoy the meetings and tradeshow and talking with fellow river company owners. This time it was a real struggle. I walked a lot more than I had in…6 months? I was basically only tokenly there.

I also struggled with eating up until Mid December. I also started to get my energy back around then.(that probably is not coincidence) On Dec 12 I was able to play a little pick up soccer. I have been playing soccer weekly since.

The past two months have been a non stop reminder of what home is. Just a ton of fun events and gatherings with friends. From dressing up at the martini party, to play poker with the boys it has been everything and more I dreamed of while I was stuck in the hospital room.

arlo and friendsChristmas was great even though my presents did not arrive on time and my house was sprayed with skunks. Which meant we had to move the festivities elsewhere. Kind of a bummer since, after the year I had I was looking forward to playing host to my family. A great part of Christmas is many friends come back to town to visit. So I was able to see old friends like Bart, Erin, Kalen, Cecily and Kellen.

I also was able to get out to Canyonlands National Park with my mom and friends. Which was, as always, wonderfully beautiful. With my energy coming back I have been able to get out a lot more. It also helps that the weather has been crazy nice with highs in the low 60's for the past 4 weeks or so.

Just to rub it in. here is my fun activities I have done in the past month or so. Sea Kayaking on the Colorado River with only a couple of Ice burgs, Full Moon hike to delicate arch, all day trip to Canyonlands national park, hike twice a week up moonflower canyon with Lulu, on new years day we went for a picnic/shooting guns day, at least once a week throwing disc golf, Bowling for Zachs' Bday and we are still playing soccer outside.

arlo sea KayakingSo lastly I will come back to talking about cancer. My final tests were moved to February. If the tests are too close to the final radiation than there could be false positives. Which means I will not know results until then.

I think I should be nervous or maybe scared of the results or not knowing. But I am really not worried about it. Well "worried" is not the right word. I not thinking about it. I am worried about it cause I really do not want to die. Especially after the last two months I just had (not to mention the previous 31 years). But I am not letting it affect my life. Either I still have cancer or I don't there is really nothing I can do to change that at this point, so need fretting over it. I do know the day I go in for the test will be the scariest most nerve-racking I have ever had.

It will not be just the PET scan I have to do but a variety of tests. Heart and Lungs. I already lost 18% of my lung capacity from the first set of Chemo done a year ago. So I am hoping to have better results this time. This 18% I will never get back. I don't know if that really matters.(I am not Lance Armstrong) I just use it as an excuse when my hiking partner is kicking my ass up the delicate arch trail or when I'm slacking in soccer.

All right enough thinking about that. I will send an email out very quickly after the results to let everyone know what is going on. I might send one before, when I get the exact date of the tests also. I think a lot people would like to know.

arlo and famI do have to send at least one (two) thank you's in this email. I am not sure I have mentioned this in previous posts but we(as in the arlo team) raised $105000 for my medical expenses! The number kind of blows me away. We only really pushed fund raising for about a month and a half. There are SO many wonderful people. I don't really know where to start. So I wont and will thank everyone in a follow up email. But I do want to thank my family both near and far. Not just for fund raising but I received wonderful care packages and cards from them all the time. It really was extraordinaire. Also all the people that worked so hard to get the Cancer Free Arlo event off. Many worked on it like a full time job. I can not say thank you enough. But I will try.

Alright that is really what is going on with me and my recovery. I am getting my energy back though my motivation is still seriously lacking. It is hard to be at work. I just don't care as much as I did before. I hope that changes because I love my job. Maybe when I get out on the boat I will remember why I love this Job.

There is one thing I'm a little bummed about. That's my hair growing back. I loved not shaving. And it is growing back so fast and thick. Crazy. I think I look good with a shave head but it is a pain to shave your head all the time. I don't know how Bruce Willis does it. He must pay someone.

Thank you everyone. Love you. Arlo

Tags:

Arlo's Cancer Story

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

Tags:

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

Tags:

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.

 

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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.

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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

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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

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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.

 

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Arlo's Cancer Story