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Final BMT

by arlo tejada 18. January 2013 17:09

Hello Everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank You

Arlo

Tags:

Arlo's Cancer Story

Ready for round 2

by arlo tejada 18. January 2013 17:04

Hello Friends,

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

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

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

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

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

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

 

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

 

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

 

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

 

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

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

The password is 5818

 

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

Looking forward to being done.

Arlo 

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Arlo's Cancer Story

Moab!

by arlo tejada 18. January 2013 17:03

The Latest Update on Arlo

Moab

Moab!

Hello Everyone,

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

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

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

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

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

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

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

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


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

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

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

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

Tags:

Arlo's Cancer Story

Reflections of Cellblock E 803

by arlo tejada 18. January 2013 17:01

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just being out of the hospital is healthier for you.

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

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

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

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

There are also wonderful things about the hospital.

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

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

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

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

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

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

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

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

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

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

I just want to be home.

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

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

I just want to be home.

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

There it is way long and way blah.

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

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

Thank you, Arlo

Tags:

Arlo's Cancer Story

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

 

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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

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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

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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.

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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