Finally! I am ready to get you an update. Since it has been a long time and A LOT has happened I will going to break it into many parts.

I will start with bullet outline of basically Nuts and bolts.

Then I will write something about feelings and details . I will break these up also. Could be rather chaotic but I hope it is entertaining. And I promise lots of grammar issues. I blame that on the chemo, half of obes stem cells, and steroids.

And again I know this should have come out a long time ago.

DEC-
• Last PD1 End of Nov
• PET SCAN Dec 8.
• Left Moab on Dec 15. Moved into Sean and Mary’s that evening. They were not home which was kind of an odd feeling. Like a whole new beginning.
• Dec 16- Early morning surgery at LDS to place the line for all my chemo and such.
• Moved into the hospital that day.
• First couple of days of chemo were not to bad.
• Chemo Days 17-23
• Obe gave up the stem cells on Xmas eve.
• Best Christmas Gift ever!
• I felt great, even ate a giant burger Ari and Josh brought on the day I received his stem cells.
• The day you get your stem cells they call your birthday or day 0. (even though I had been there 7 days.
• Christmas was great with lots of friend visiting.
• I felt ok for about the next couple days. Lots of visitors, holidays are the time to be in the hospital because everyone is running through SLC then.
• Including a santa. (though my brother was bummed their was no Jazz bear who went to the huntsman instead)
• Did the last of the chemo on dec 28
• I had a mini break down on Jan 4th. I really needed rest from everything. My Family was great but sometimes I need space.
• I still had not really thought about how much harder it was going to get.
• Started to have side effect around Jan 30. Kindeys issues, too much water issue sucky food.
• It was a while ago so I can remember all the issue.
• No Sleep, more vomiting than normal.
• I also had a running headache that was rough

Jan

• Do not remember new years and not in the way I like.
• To be honest I do no remember a lot of this time frame.
• I had massive headache during this time frame.
• The Dr gave a lot of different drugs to battles this. Nothing worked really (except leaving)
• I did have the tv schedule memorized and I hate all insurance company commercials.

• I started to feel better around the jan 9
•I left E801 ( the LDS suite0 on Jan 11. )
• I still had a bit of a swollen are on my left arm.
• But I was drinking water and food pretty well. And no fevers in a while.

Going Home:
• Getting home allowed me to eat and drink much better. (still barely making 1000 calories)
-Best night of sleep in a month.
-14 pills in the am and 7 in the pm is very hard.
-Sore from walking more yesterday than I have in a month.
• I had the whole clan over for a while at Sean and AMrys.
• They are way over the top in how much they have opened up their house. • Could not have a better situation.
• I started a rash not too long after getting out.
• My left arm swelled way up! Club Boy for sure.

Back to it.
• It was nice to be out but I was not right.
• It only took 7 days to be reemitted.
• I had a high fever and very weak.
• They moved me to a new room that was way smaller ;(
• I have had a member of my family around since the beginning, but this was where I realized I did needed a caregiver.
• The family has been great.
• A rash started to grow on my body.
• They gave me steroid cream that made my skin burn.
• The gave started me on a lot of steroids overall.
• They had to stop the major GVHD immune suppressant because of complications.
• This left me (and still does) leave me rather open to chronic GVHD.
• The rash was acute GVHD which is not a bad thing…kind of.
• I had a bout of tiredness I cannot began to explain for two days probably around Jan 17. Hardly move.
• This is where I was probably more scared than I have even been.
• I had to sit down to brush my teeth.
• This second stay was HARD.
• I had MAJOR issues. The drs did not lead on at time but since 4 of the team member have expresses their concern with my condition.
• fix one issue had the potential to cause others.
• Kidneys had gone down hill and may need dialysis is the future.
• Started high dose steroids to combat GvhD • Had to stop all other GVHD drugs because of reactions.
• Lots of swollen parts. looked like the girl from Willy Wonka and the Chocolate factory.
• Went from 155 lbs to 210. (back to 160)
• They gave me a drug that made me pee every 10 minute and looked like dark grapes.
• Skin pealed like a snake. Gross and uncomfortable.
• Hard to talk to visitors
• Had to have a lot of test- lung test breathing, xrays
• I was on O2 for a while.
• Lots of drs coming by, kidney, lung PT,, BMT.
o Highlight of the lung test: the Dr answer his cell phone in the surgery room. Wanted to get off that Sunday and my test was taking longer then they had thought it would. (5 hours)
• There was a point I was not allowed to have more than a .5 liter for the day!
• Skin was super blotchy.
• I guess I looked bad.
• This is probably around Jan 20 on.
• I know there are more specific items but I cant think of them
• oh and the Boncos loss
• Bad days.

But not all bad:
• The Nurses saved me. The BEST nurse in the world Nurse LISA, brought in memory pad foam to help me sleep.
• There is a lot more I can go on about the great nurses at LDS and the the best one Lisa.

Getting out number 2
• I really started to turn around Jan 28th or so.
• I have been out of the hospital since feb 4. (wow and it is March 10th.)
• Things have been going well.
• Though every time I take a strong step forward I always have some bads news also.
• I was released on the condition that I would come to the hospital every day to see how my blood count were doing.
• The first couple of had out were hard physically and mentally. (I will go over later how screed I am to be free and so uncertain of what to do next.)
• Physically I have to walk up stairs to get to my room. Which at first was exhausting.
• Also my eye sight started to go blurry, and still does at point.

Friends
• A highlight was having my friend fly in from Portland, Texas and Moab. Really a nice pick up. Hospital
• A total of 45 days in the hospital now.
• A gross bill of $543,000 so far. Just hospital….dont want to think about the flights, hotel rooms, meals for my helpers, etc)
• I still go to the hospital every day.
• Take lots of pills. Two different infusions self giving.
• I am around day 81 now. The real reevaluations start at day 100.

My day goes:
• To the hospital around 9-10;
• Get labs.
• Wait 20 minutes to 60 minute to s see what my counts are.
• If to low transfuse, blood.
• Maybe do a test.
• If it Thursday meet with the dr.
• Meet with pharmacist to make sure the pills are rights.
• Get home from noon-3 depending on rest.
• Do SGRE marketing or watch tv, movie,
• Have insomnia. So lay in bed starting around 10. Watch Netflix.
• Cant read really well cause of my blurry eyes.
• Crazy cramps come on around 1. Last for 1-3 hours.
• Take a cocktail of pain pills.
• My hands also freeze up like arthritis. In crazy pain.
• Cant sleep so I go back to work.
• Or I get up and watch tv and eat cherries.
• Repeat.

Hello Everyone from snowy Moab Utah,

This updated was mostly written last week after I meet with Dr. Hoda and the BMT team. I did not want to send it out until I had my PET scan results. Thanks to the incompetence of the Huntsman Caner Institute I have just received those results. The wait and result have turned what was a happy email into a rather turbulent one.

This is an important update and I wanted to put a lot into it. I am having a hard time organizing this one. I want to go over all the past events along with what is going to happen and put a lot of how I feel in this update. Just do not know where to start.

This last little while has been very busy, stressful and fun. I think the next couple of weeks will be the same until it gets real boring and rather…depressing.

My life has been a combination of lots of work and prep for when I am…gone, Mixed with trying to soak up as much LIFE as possible without endangering my “future.”

I think the best way to go is just in a time line:

Oct 30

This update starts off with my pleasure in meeting the son of two of my favorite people Gretchen and Jon Fuller. I got to visit their little boy Bram Fuller 4 days after his birth. I am very excited for these two very important people in my life. And I hope to be around to watch him grow up. It seems like everyone I know is having kids and I really want to see these little ones grow up. Who else is going to teach them all those bad habits, but Uncle Arlo?

Oct 31

I went to the Hospital to meet with my doctor and go over my thoughts on the BMT.

The highlight of my day was not the 4 pokes I got from the Huntsman staff but the Mini Mouse that gave me a cookie and had a mans voice. Pretty awesome.

Nov 1-8

This week was full of fun including dancing to the boom boom room and sea kayaking on one of the last warm days in Moab.

Nov 9-14

This was a week of meetings. The weekend started with my sister, Emma, coming over from Colorado Springs. I am training her to hopefully be my assistant but really to replace me at the company. This was a lot of work because I had to rewrite the marketing plan, organize everything I do, and set realistic goals for her.

This was a very hard/stressful process but helpful. Overall this was a very good meeting for her, me and in the end for my father. He is really excited to have her move to town.

I also had meetings with the Moab Travel Council, Utah Guides and Outfitters and a meeting with the SGRE staff over Emma’s integration. This may sound weird but these “mundane” board meetings are important to me and help me stay in the here and now.

This all ended with a meeting with Dr. Halwani on Thursday Nov 14th. Dr. H. told me that a date had officially been set by the LDS staff of Dec 18th to begin the Allo Transplant. He also thought it was a good idea to do my last PD1 treatment and that would give me 30 days to clear the drug out of my system before the transplant.

Of note is that I started to feel some back pain during this week. Similar to my feeling two years ago when I had my worse scan ever. I noted it to the dr, he was not really to concerned about it so neither was I. (more on this later) I know I am leaving tons of cliff hangers.

We also set up a Nov 21st PET/CT scan. More on this later.

Nov 15-17

I ended this week by flying to Las Vegas and meeting with my friends for a wild weekend in Las Vegas. I had a lot of fun even if I did not win a single sports bet. (That could change if Germany wins the World Cup) (another cliff hanger?)

Nov 18- 25

This was a week of tests. I stayed in SLC for blood tests (about 17 vials of blood) and a bone marrow biopsy. Of note the LDS staff only had to poke me once to get blood. Thought the Bone marrow biopsy was a little rougher than the last two times. The PA had a little trouble “chipping” some of the bone for the biopsy. This procedure is really not as bad as it sounds, it is just…awkward . The drilling and pounding in your back is something that is just not right.

Then I drove home to stay in my bed for just two nights before coming back to SLC.

I went back to SLC on Weds Nov 20 to meet with Dr. Hoda and the BMT team and then I did a PET/CT scan at the huntsman on Nov 21. I am going to go over the PET/CT first.

The drug company required that I have a finally PET/CT scan at the end of the trial and that I do it at the Huntsman. I had to do some rearranging so I would not have to do one at IMC and one at Huntsman. Finally I was able to talk the LDS team into taking the Huntsman scan, which is also nice because the drug company will pay for this one. (the test is 10K by the way and I have done 21 or so now.)

Dr. Hoda

So back to the official consult with dr. Hoda and the BMT entrance. Dr. Hoda was the only one I wanted to talk to about the BMT even though there are 6 doctors on the BMT team at LDS. (I would have been ok to meet with Dr. Asch also) But Dr. Hoda is the doctor every cancer patient wants.

Dr. Hoda is one of my favorite doctors. He is no bullshit, straightforward but nice, a little cocky (which I love) and really really smart. Not just with a ton of knowledge in his head but he has the ability to take it out of clinical and doctor speak and break it down for you in a way you can understand.

Dr. Hoda got me in the PD1 trial, personally calling Dr. Halwani. He called me in Oct from his vacation to stress how important he thought it was that I go STRAIGHT to transplant even with the PD1 working so well. He was also the doctor who had to talk to me about doing open heart surgery just to get to the transplant oh so long ago.

This all to say that I have TREMENDOUS respect and admiration for Dr. Hoda. I think, NO… I KNOW if I live through this, my life is squarely on his shoulders. I know he saves lives everyday but I feel he has gone above and beyond for me and my family.

This meeting was slightly a formality since have been in contact with LDS since 2011. We have had several meetings about doing an ALLO transplant with Dr. Hoda before this meeting. I went with My Mom, for what was still a rather important meeting in my head.

Because the past week has been crazy, I am not going to spend too much time on the details of this meeting. Which is funny cause I thought this entire update was going to be about this meeting. We did talk about long-term side effect and such. I will stress two things from this meeting.

Help Needed:

I really need help finding a place in SLC after the treatment. They want me to stay in SLC for at least 120 days. I have a huge issue asking for help. Which makes me delay in asking for help until it is way more inconvenient. Which happened last time with Dasch. And I was incredible lucky that worked out so well.

SO I do need a place to stay in SLC after the treatment that can accommodate a sick me. So anyone that wants to help me out here I would be much appreciated. I have not really thought too much about this because I think it will just work itself out. I also just do not want to stress about it or ask others to inconvenience themselves for me. I have had a couple people offer and I may take them up put I REALLY REALLY do not want to burden anyone. (one of my biggest fears in life is being a burden. Might even be a phobia.)

Surprising meeting Stats

The second part of the meeting was on how I will recover and new information on that. Dr. Hoda really made it seem like I should not have problems with the whole process. He said “I hope to have to you back in Moab by the summer and back on the river in a year.”

Wow, That was not how I expected that to go.

Top Secret Charts

Next, Dr. Hoda pulled out a chart that had been given to the BMT team at a recent conference on transplants. The chart was of Hodgkin’s patients all doing allo transplants; broken into 4 groups: Full match non-related donor, full match related donor, half match unrelated donor, half match related donor.

So right in line with what I am doing. (I am a half match related donor) There will be a test so keep notes.

The first graph was called “progression free survival.” Yeah that is not a scary/cold way of putting it. The graph had percentages on one side and time on the other. The graph showed for the first 1000 days 85% of half matched related patients survived. (for those not paying attention that is the boat I am in.) This was by far the best, and most the death were within the first 100-300 days.

Interestingly the graph showed full match unrelated as the worse and down around 50%.

The second graph showed the same four groups but how many had developed graph versus host (GVH) disease. Now you would think that a half match would have high GVH and a high success of taking out the cancer right? Well that is not what this graph show. Only 10% of those doing a half match related got GVH! in 1000 day period. The other three groups show much worse in both categories.

Here the catch: First this is an unpublished study and Dr. Hoda would not let me take the chart. (Maybe I am not even supposed to put this out there) Next there are VERY few who have done half matches…EVER! I think the number was 50ish. That is also why it only went to 1000 days. (the other Full Match lines did go to 10000 days.)

Could have been the first Half Match at LDS:

Side story, When I finished my auto BMT and went in for my 100 day review, I had already started on Brentuximab and was feeling much better. At that time Dr. Asch told me that I should still do an ALLO transplant even if I went into a complete remission on Brentuximab. I thought that was strange at the time but she was obviously right. But the story is that at that time she mentioned that if I decided to do the ALLO transplant they would like to do a half match. Which meant I would be the first to do a half match at LDS hospital and the first in the State of Utah. Something that was not mentioned at the time.

Now 2 years later they have done a total of 10 or so. Of which most have done well and some that have done REALLY well.

DOUBLE WOW! Great News!

Mom and I left the hospital on a complete high. 85% is better than the 50% I was working on for the double auto transplant so long ago. And 10% on the GVH? Love those numbers. (even with a really small sample set) Maybe things have finally come around for me?

Of course I think of what Dr. Ptystas told me at the VERY VERY beginning. Statics really do not matter to me. Either it works 100% for me or 0%. And that is all I that matters. BUT I like when the odds finally start working in my favor.

If you like happy ends stop reading now.

Not so great Huntsman

I have held off on finishing this update because I really wanted to see the PET scan results. I have been having back trouble on the left side of my back in the middle. This reminded me of that terrible time when I could not get out of bed and my back was killing me and it turned out to be cancerous lesions on my ribs, spin and such. I told both Dr. Hoda and Halwani about it and they did not think to much of it.

Now to the Huntsman.

I had the PET scan on Thursday morning. 7am.

At the IMC I have tests at 9-12 and meet with the dr. in the afternoon. By 2pm I can check online and see my results almost always. I love being able to read my results online this allows me to compare to my previous results and gives me a visual of what is going on. It is really nice and comforting. This also allows me to formulate intelligent and important questions for the doctor.

Ok, so the Huntsman does not have this feature. I think this is complete BULLSHIT.

You have marble covered floors, redwood panels, free headphones at check in and more money than you know what to do with and you cannot upload reports online for your patients? UNACCEPTABLE!

So this leaves me at the mercy of the Huntsman staff which I have already explained is terrible. The communication is a joke. I have had SO many problems with this. My coordinator at LDS is having trouble getting my file and reports from them. The PA that did my updated history at LDS was very frustrated that she could not get ANYTHING from the Huntsman. That means they have to go off what I tell them was my test results and when from my memory only. That is just ridiculous, this could honestly put peoples lives in danger.

On Friday Nov 22 I called the Huntsman to get my results. I left a message for my study coordinator to email me or call me with the PET scan results. I also emailed her.

I received a message Friday evening from a nurse and she ran through all my labs. Nothing about my PET scan. LABS? Do you really think I am going to call about how my labs are doing? I guess some people do have those needs. But I did tell them I was looking for my PET scan results so somewhere in the communication it got lost. For the weekend I had no PET scan information and my back went from annoying to painful and I started to freak out.

Monday 9am. I email again to get my PET, PET, yes PET scan results. I had some pain pill from the bone marrow biopsy, which helps with the back pain but does not help with my anxiety. I called and left another message.

Nothing.

Tuesday 9am I find my coordinators direct line. I call her get her voicemail. I leave a message.

I call again at 2:30 pm. This time I get her. She looks up my PET scan.

“28.9”

“Excuse me”

“Everything else looks good though”

“Wow” I thought, could that be right?

She gave me a lot of numbers but it is hard to process the numbers and compare them to previous info.

Basically what I got out of all this was that the 2 main tumors had shrunk even farther from before. Their brightness was 10 SUV or something like that. It meant nothing because I could not remember what they had been before. And that there was a spot on the middle left side of my back that was VERY active at 28.9.

I asked her to email me the report to me so I could look it over and process it. (Probably beating a dead horse but this would have been a lot easier online) She told me she would have to print it out, scan it then send it to me. Again, WTF, you can not just send me the report right off? Print, scan, email? Might as well send smoke signals or pony express to Moab.

What does it mean?

I did not know what all of this meant. Would I have to change the BMT date? Could I even do the BMT? Do more chemo? How large and active are the tumors? Do I need to do a new study? Can I get in earlier? Really wanted to read the report and try and figure out what it all meant.

I call my mom right away. She was obviously very upset and confused also.

I called Cindy the coordinator at LDS next. I wanted to let LDS know the issue. I think everyone has been working on the idea that I had no active disease. Or at least I was working on that idea.

Cindy let me know that Dr. Hoda and Dr. Halwani had been talking and still thought it was a good idea to move forward. This made me feel better that Dr. Hoda had seen the report. Though I was a little upset that no one thought to call me, the person with the cancer and painful back lesions?

5:30pm Tuesday Nov 26. I still had not gotten the report from Huntsman. I called again to make sure I had not been forgot. I really did not want to keep putting this update off and I did not want to send this out without reading the report for myself.

The coordinator answered the phone and said she had the report in the scanner and was going to send it in an hour. UGH. I asked her something the PET scan tech had mentioned off hand, about having a test on Dec 4tth. The coordinator replied that she would have to check on that. When she got back to me it was to no ones surprise that I had been scheduled for a CT scan at the Huntsman for Dec 4 at 6 pm.

Here I go again. If I had been informed of this test I could have picked up the needed contrast when I had my PET scan. This all means I have to go up on Dec 4th when I had not planned on it. And I will have to be there 2 hours earlier then I want or really need to be. I get to drive to the Huntsman and pick up the contrast then sit there for 2 Hours for a test that will take 15 minutes.

I AM NOT HAPPY WITH THE HUNTSMAN.

OK I will try and leave the huntsman alone for the rest of this ridiculously long update. I am pretty pissed off in case you cannot tell.

And my new situation does not make me friendlier. I feel bad for my family this weekend. I hope I can relax and just enjoy the moment and life and such.

But to be honest I am really really upset and feeling let down.

It is no ones fault but I am confused, lost and…

Really scared.

Shit looked so good last week. I was so excited about “the chart” and the really thought I was going to crush this and move on.

Now I am as discouraged as I have ever been.

Wow, that is a terrible way to end an update and send out right before thanksgiving.

You know though. I still believe I will make it through this.

Thank you all.

2014 Rafting Catalogs

The Sheri Griffith River Expeditions River Journeys catalog has just arrived in Moab. Filled with Lots of new photos, updated itineraries and great information.

BIG CHANGES TO DELIVERY OF THE CATALOG: After years of sending out thousands of brochures many of which were as returned as undeliverable or sent to the landfill, we have decided not to do a bulk mailing in 2014.  If you would like to receive a copy of our 2014 brochure, or impress your friends and family members, please call us at 800-332-2439 or email us at info@griffithexp.com.

We will even throw in a FREE DVD, Moab trip planner and a postcard that you can keep or mail to your friends!

Here are the best ways to get your copy:

• Email (info@griffithexp.com)

• Website (click here)

• Phone (800) 332-2439

• Mailing us (PO Box 1324 Moab UT 84532)

• Walk in and ask for one (2231 South Highway 191 Moab Utah 84532)

• Telegraph (nearest Western Union)

• Secret handshake. (Well it is secret for a reason)

A Sort of Timeline

Hello Everyone,

I am going to keep this brief because I have a ton of things to do in the next little while.

I think it is very important that you know I have decided to do the allogeneic bone marrow transplant. And do it rather quickly.

After 3 conversations with 3 different doctors, it feels like the only choice I have to live a long term life. They also all were very insistent that I move earlier rather than later. In fact Dr. Houda called me personally out of the blue to express his very strong opinion I do the transplant well before my four month window with PD1.

There are many more questions I need/should answer to you.

But I just do not have it in me right now.

Here is my proposed/most likely medical schedule.

This is the order I think:

• Nov 14- PD1 infusion- Huntsman
• Nov 14 or 15-LDS Hospital Get an official consolation on how the whole process really works. What to expect. Including what I need living arraignment wise after transplant. I.e. How long should I count on living in SLC afterward. 2. Then finding a place to stay for that time period.
• Between Nov 18-27 Get approval from Medicaid: This means Lots of tests,-same as before
• Bone marrow biopsy, STD tests, Heart & lung tests, Drug tests, Labs, psych-social evaluation from LDS Social worker, dental work up
• PET Scan, CT Scan.
• Tests, Tests, Tests
• End of Nov- Medicaid approval
• Nov 27-PD1 infusion
• Dec 1-7 (sometime) Obe has to do a donor evaluation
• Dec 18- Move to SLC. Start the process of destroying my immune system. (not sure how that all works yet.
• Dec 20-22 Obe does the bone marrow transfusion. Day after I get the cells.
• Dec 23- Jan???
• Sit in the hospital for 14-???? days as I recover.
• Jan- Spring: Long recovery and such. Summer timeish Back to moab?

Ok that is it.
I will update again when I feel up to it.

 

Hello my friends,

This is a happy and a rough update.

Not quite sure where to start.

I will just go in timeline order.

After my last update. I had an interesting week. Mostly dealing with the government shutdown and it’s effect on our town. I was even quoted in the Salt Lake Tribune: http://www.sltrib.com/sltrib/news/56990957-78/parks-national-utah-park.html.csp?page=1

The big event for me was getting sick on Saturday. Sunday, I had a solid cough with a little green. This scared me a lot. Knowing if this was bad they would kick me off the study.

By Tuesday the cough had not gone away. I called the clinic to see what I should do. They told me to go to the ER.

I spent the next 3 hours there. They ran me through a bunch of tests. In the end they decided I was fine and it was just a minor infection.

The next day I went to SLC with my buddy Larry to get my once a month CT scan. And treatment.

The scan went fine. (as can be for something that makes me feel like I peed my pants)

We also went to a very nice restaurant in downtown SlC called “the copper onion.” Very good food. My little shout out for this week. Dr. H recommend another restaurant for next time…so stay tuned for that. (I am sure you read this to get my opinion on restaurants in SLC)

The next morning Larry and meet up with another friend Ali went with me to the get the drug at the huntsman.

Dr. Halwani: “I have news you are really really going to like!”
Me: “oh, I am I cancer free?”
Dr. H: “Pretty Much!”
Me: “nice”

I have what is called a complete response. Complete response??

That is fully a bullshit medical/drug company term.

For the past week I have been trying to figure out what that means. At first I thought this meant I was cancer free. I am not cancer free. I am very close. (which means nothing.) It is a drug company term for this drug works on you.

After rereading the CT scan report, I have realized that there is only one tumor they can see. It is 14mm by 8mm. Dr. H said anything under 15mm is consider complete response. I guess clinical doctors do not deal in remissions or something like that.

This is good news…I guess.

I had a concern that this drug would work too well. And then my next decisionwould be more forced on me more quickly.

I was right.

I have to make an official decision on to do the Allogeneic bone marrow transplant.

I can stay on the drug for up to 4 months more. That gives me a little time Iguess.

Here is what I have to choose from:

To do the Allogeneic transplant:

This process would be taking someone else’s stems cells. In my case it would be my brother as the donor. He is what they call a half match. Which is pretty new process. Normally they only transplant full matches. But some new studies have shown half matches are doing well in Hodgkin’s patients.

The BMT team would destroy my immune system with some kind of Chemo. Then implant (similar to a blood transfusion) Obe’s stem cells in my body. This would make me have a new immune system.

The advantage of this is that the new immune system would recognize the cancer as bad and attack it.

The issue is that the new immune system would also not recognize my organs and such. Therefore attacking me, they call this graft v. host. To help keep this down I would have to take immune suppressants. For the rest of my life.

I would be in the hospital pretty often, especially in the first year. I would have to change my life style, drastically. The sun would be a major issue. Places with lots of people would be an issue. Rafting would be very unlikely.

And that is if it is successful. And to make it even better…It might not even work. They give it a 40-50% chance. Though those might have been the stats with doing the BMT when the cancer first came back. (I can not always remember the numbers. There a lot of them)

Obviously those life changes are hard to think about. I might not even be able to accomplish them, I do not think I can be trusted to take pills every day.

On the other side.

To Do Nothing:

If I do nothing it is a much larger chance the cancer will come back. I kind of feel like it is gambling. But with my life.

So the decision is….

I hiked up to my one of my favorite spots in Moab to write this update hoping it would help me make a decision. Maybe by the time I get finished writing this update I had will have an answer to send you all.

Nope.

I have nothing. I wish my dog would be more helpful instead of barking at sticks that are too deep for her.

I planned on making this decision quickly and then I would not have to “worry about” any more. I also have a lot of things to do if I decide to do the BMT. Work, house, and more things to deal with before I am potentially unavailable for months/years.

But the more and more I think about it the less and less I want to make this decision.

To do the life altering/maybe saving treatment and to live…kind of.

Or

To do nothing and be looking over my shoulder forever. And forever could be very very short. But be able to…”live” in that time.

So I guess this is a “happy” update. But I am not overly excited about it.

I will update everyone once I really come to a final decision.

Hello Everyone.

This should be the shortest update yet. I am just updating you on my treatment from last thursday (Oct 3rd)

For those that do not want to read more: I feel great after the last treatment.

The rest of the story: I came up to Salt City on Wednesday Oct 2. The drive is starting to get to me even though the Leafs are starting to change. This makes the drive a little bit nicer. It is still 3:30 hours of me thinking to myself. Never a good idea when you are not sure how long you are going to live. I did not have anyone come up with me this time. My Mom flew in on Thursday Morning.

We had breakfast at the Park Restaurant before heading up to treatment. (that is my product placement for this update)

The Doctor was again very excited about how things have been going for Hodgkin's patients. He was also excited about the CT scan results.

My schedule for the future will be pretty set at every other thursday in SLC with CT tests every couple of times. This also runs into Halloween, Thanksgiving, and Christmas. Not to excited about that.

There was a little discussion on how fast we would need to move to the BMT at the end of treatment. This is something that has been brought up a lot lately. In my head and with friends. The PD1 might be too successful and this has really forced me to think about my next step.

The short answer is I do not know what I am really going to do.

I have not really thought about it a lot lately. But it is something I need to think about. I will save that for the next update….two weeks away.

And Yes I am still think of doing it...and still thinking of not doing it.

In an effort to keep this short. 5 days after the drug I feel great.

Had a fancy dinner with my mom last night and we went very ritzy and stayed at Grand America hotel in SLC. (Hey if the drug company is paying for it why not?)

Otherwise my week was rather good. Lots of fun, including Moab Pride events, sea kayaking the river, last weekend up big cottonwood canyon with friends, and finishing the SGRE brochure. 

Very much feel like my rather amazing life is turning towards the even better, yeah I am going to say it. “I am winning!” Much Love!



Arlo Tejada

All Good!

Hello Everyone,

This will be a much quicker email from last weeks. And that is a good thing.

I went to SLC on Wednesday Sept 18th, to do another treatment and a CT scan. The CT scan was on Weds and the treatment would be on thursday.

The CT scan went fine except the nurse had to stick me twice. And on the second one she said "well I think it's in there." At this point my veins are rock hard and it seems to be very difficult to get to the obvious ones. The contrast that they give you beforehand is terrible and I had to start drinking it two hours before the 7pm test. Which meant drinking it on the drive up through twisty roads. Lucky for me I had a driving partner that liked to remind me "It's time to drink!" and "One more sip!" The other hard part is the IV contrast they give you while you are in the machine. The last two times I thought I was going to throw up afterward. It makes you feel like you just pissed your pants. This time was worse than anytime before. I did not throw up but felt terrible for a couple of hours.

The next day the we went in around 10. They take 12 vials of blood every time I go in these days. This time the nurse hit the vein on the first try. But that might be because my accompanying friend, Alycia, threatened the nurse. The nurse looked at each arm twice "to be real sure."

When I met with Dr. Halwani he was down right giddy. He said the response in Hodgkins patients has been doing really well over the study. Even Alycia commented on the doctors mood "Is he always like that?" He also said the CT scan showed no Pneumonia. He had to talk the drug company into keeping me on the study.(or at least that is what he told me.) Staying on the trial is obviously a very good thing. He said I most likely will take about 10 total treatment, but really it is just guess. I should not expect any really improvement until week 8.

Sadly the CT scan had not been transcribed by the radiologist by the time I saw Dr. H.

I went to infusion at around noon. I was there for about an hour. It went really smooth except for losing a game of Battleship to my friend. (I know can you believe she did not let me win?) That is how I wish every infusion went. How far it has come from 3 years ago, puking on the "Red one" of the ABVD chemo.

On the way out of the infusion center the coordinator gave me the CT scan report.

It took me a couple times of going over it but all the tumors seemed to have shrank!

The largest tumor went from 3.3x1.3 cm to 1.9x0.07 cm. this is of course a great sign. Kind of wish I could have talked to Dr. H about it but it does give me a lot of hope. Of course the PET scan before the 4th treatment will be the most important. The tumors were not big but were very active on the last PET scan. After the treatment I had no reactions and felt very good. I even was able to have dinner with Dasch and Meg. Which was the first time since I had my worse scan in Feb of 2012 that I had seen them. It is kind of funny to reminisce about my last time in SLC fondly considering why I was up there and how hard some of that chemo was on me.

I still feel great. In fact I think I feel better than I have. But that might just be in my head, which really does not matter does it?

Ok that is all. I have another test on Thursday Oct 3rd and I will write again then. Hopefully it will be short.

Thank you all for your support and love.

Arlo Tejada

Huntsman Cancer Center...Huh?

Hello Everyone, The last month has been very stressful and more of the same. Nothing ever seems to go the way it is supposed for me anymore. Just when things start going well, something always gets messed up.

On Aug 15th I went to SLC to do another PET scan. This one was at the Huntsman Center. They do this test a little different. They shoot me up with the radioactive sugar like normal but instead of the normal 50-minute wait they do 90. Which is very boring and they do not like you to read or move. Plus the test itself is 35 minutes long in the “tube.” Supposedly this test is more accurate.

The report on the PET scan came back bad…and not so bad. There has been only a little spreading or growing of the tumors. They are basically the same size which is good since I have not had treatment in 3 months. But the activity or brightness has gone WAY up. The main tumor at the top of my stomach went from 11 SUV to 22.34 SUV. The other larger tumor went from 6 to 18 but both are about the same size as before.

On Aug 16th I talked to Dr. Halwani, who is running the clinical trial at the Huntsman Center in Salt Lake. Here we setup a start date of Thursday the 22.

I am trying to keep things normal in my overall life. I have stopped going to work but still working from home.

I am also looking at potentially hiring an assistant that may replace me in the future. This is a lot harder than I would have thought. I have to make a list of what I do, then I have to go through and fill in the details. I realized that no one else in the company has a clue what I do. This task is incredibly frustrating and actually very sad. Do not like the idea of not being here. But I guess that is to be expected.

The big issue for the week was I got sick on Wednesday August 21st. I drove to Salt lake that day. It was a miserable drive. I was very sick with flu like symptoms. I really should have called the dr. and the hospital but I was very worried about getting kick out of the trial or waiting longer on getting treatment. It has been months since my last treatment and I have started to show new symptoms such as night sweets and itching. Obviously this was very worrying to me. (somewhat of an understatement.)

I went into my appointment the next day feeling a little better. I thought I would be able to fake it. I was not. They were rather upset that I did not call and sent me home. Along with some antibiotics. I spent the next two days in bed in SLC. I was in bad shape. I went back to Moab on Saturday not feeling great but better. By Sunday I was a bit better. And on Monday I was…normalish. Still sick but not in the body.

I was pretty good on Tuesday Aug 27 or so I thought. I talked the doctor into giving me the drug that day. The best part of the day was the free set of Skull Candy headphones given to all new patients. That is about the only good thing that has happened to me at the Huntsman Cancer Institute. I will go over this more later.

I had to sign new consent forms because they have found new side effects for the drug in the past week. One of the new side effects came from animal testing. Which means this drug is so new they are still testing it in animals…and still finding side effects.

The infusion center is amazing. Huge room with great views of the Salt Lake Valley. Very comfortable and fairly private chairs with individual tvs. I can not stress how much money this place must get, really seems like money is not an issue. The service is the issue.

I came into the Infusion room around 1:30. I was setup with a nurse and a helper. The nurses seem to be taking care of about 8 people at once. Which I thought was a lot. But it was hard to tell.

I was hooked up fairly quickly and got under way. the quote of the day came from my nurse who said “Wow, this does not have name? It’s just numbers. Never seen that before.” Very reassuring.

The infusion took about and hour. The big issue was that I then had to wait 3 hours and get my blood taken to see how much of the drug was still in my body. Here is the rub. The blood tests are not to see how I am doing it is strictly for the drug company’s research.

At around 430 my nurse left without warning. The only way I know this is because I could see her from out of my window at the bus stop below.

At 5:30 another nurse came by to do the blood draw. I was not feeling great so I asked her to check my vitals. I would have thought that would be the routine but I guess it is not. Temp was a little high but nothing to worry about she said.

I went back to where I was staying. About a 40-minute drive away. By the time I got there I did not feel great at all. I had dinner with my friends and sent out texts to my main contact that if I called in the middle of the night, acting weird to call Jon and Gretchen, the friends I was staying with.

On my way to bed I asked Jon for a thermometer to have at the side of the bed in case. When he gave it to me he said we should check it. It came out to 101. We got another thermometer and that one came out to 103. At this point we called the emergency number the clinical nurses gave me. The doctor I spoke to told me to go to the ER. Preferable the one next to the huntsman.

We went to the U of U ER. I actually did not have to wait. They got me in a room right away. We spent about 3 hours there, mostly playing board games with Jon on Gretchen’s Iphone. They finally decided that I would be admitted to the BMT ward of the Huntsman.

This is a very similar experience to getting admitted to the LDS BMT ward for an infected line years ago. But the rooms at the Huntsman are enormous compared to LDS.

After being admitted I met with the night doctor. She said I would probably be out around noon the next day. This was great news to me.

The problem was no one talked to Dr. Halwani, even though I told them to call him and his nurse Mary. This is a trial drug and normal treatment might not be correct because of that.

After 4 people told me I would be released, Mary came and told me she doubted I would be there less than 3 days.

Even after I was told that several of the nurses told me I would be released soon. The communication was terrible.

My sister flew in the next morning. And my dad and brother came up on Saturday. We played cards and it really was not to bad.

I also had lots of visitors. Including my favorite nurse from LDS hospital. And several of my friends stopped by to watch college football. The room was kind of like a hotel room more than a hospital.

The room was not only nice. The whole floor was great. With an outdoor patio and walkway. I keep thinking how hard it will be to go back to the tiny LDS hospital rooms….that is until I think about IV’s changes.

The IV the ER nurses put in my vein was right on my elbow and very uncomfortable. As soon as I was moved to the Huntsman I asked for them to redo it and put it in a different location. They basically refused. Turns out there was a reason for this. They are really bad at IV lines.

They required a LOT of blood during the first two days. And none of it could come through the IV. Which required them to poke me a lot. I have never really had issues with anyone finding a vein. Especially just for a blood draws. But for some reason it was a huge deal here. Not a single time did they get the vein on the first try. Which for me is very rare.

After four days they decided to remove the IV that the ER put in and try the other side. It took three different nurses to do it. Again unheard of in the 3 years I have been spending time in hospitals. The second time they thought they had it in and started the antibiotics. My arm stared to swell up and get really stiff. My arm two weeks later is still slightly painful to bend.

The last IV I got they put it in my wrist. Blood shot everywhere. Then the nurse did not clean up the arm afterward and just slapped the tape on over the blood. Then left, with my other IV still in! About 25 minutes later another nurse came by and took out the first IV. At this point I had my mom call customer service. The head nurse came in a short time later and redressed the IV, Apologizing the whole time. Here is the “funny” part. The last IV was in for 2 days and was never used.

Enough about the service at Huntsman. I will just say money does not always buy quality.

In total I was in the hospital a week. I had a lot of tests run. Including several that I was never told about. A guy in a wheel chair would just show and tell me “I am supposed to take you to get a blah blah scan.” No warning from a nursed or doc. Yes very bad communication.

Dr. Halwani visited me several times. He told me I was going to be in the hospital at least two maybe three weeks. I thought that was ridiculous. I also told him I was leaving for my brothers wedding in two weeks no matter what.

It turns out I had pneumonia. Probably from being sick before and the infusion extended the issue. No one else has ever had a reaction after the first infusion on this drug. So that is a good sign. Though the pneumonia could be related to the cancer itself.

I have been taking it real easy since. The Dr. told me if I have another reaction they will most likely have to kick me off the study.

That would probably be a death sentence.

Since I have been home I have felt pretty good physically. Though I have not really been doing much. Not being real physically active and avoiding anyone that might be sick for the most part.

My highlight of the year if not longer was being the minister for my brother's wedding last saturday sep 14. I was SO nervous I was worried I would cry the whole time. One of the first things I did when I got the bad scan in April was call my brother and sister in law and told them to final set a date! They had been engaged about a year at that point. And if anyone knows Obe and Natalie they could have gone for ever without setting a date. The wedding of course was beautiful and I am very happy I was able to be apart of it.

I go back for another CT scan on Wednesday Sep 18th. And then I have treatment on Thursday. I really hope everything goes alright.

I am pretty excited to see the CT scan and I hope to see some progress but the doctor tells me not to get my hopes up. Though there was a person on the study with a Hodgkin’s that had full remission at 8 weeks. Hard not to get my hopes up. I feel great. Thank you all for your support.
Arlo Tejada

What a crazy couple of weeks I have had. Lots of ups and downs. Or maybe it is lots of downs….then it has been ups. In the end I feel it will all work out for the best.

Two weeks ago I was as sad as I have been in a long long time.

Last week I was as happy as I have been in even longer time.

Here are highlights:

• I am doing the SLC study and NOT going to be inNYC Now
• The drug is PD1. (Which is short for something.All I remember is the D is for Death) 
• It helps boost my immune system and makes the Cancer more visible to my immune system. 
• pretreatment tests: Bone Marrow Biopsy, PET, CT, Blood, STD’s etc.
• Day 1 is about 4 hours long. Then blood test day 2.
• Once a week test for 22 days. ·
• Then the drug will be about 2-3 hours every other week.
• Drug company will pay for Room and board and most things in this study. 
• I can stay at home for the most part. 
• SLC is now my kind of commute

Little side effects. For the Details: No Plan, No hope, lots of depression.

After sending my update on Thursday I start to get really bummed about my whole situation. I had a BBQ with friends and family on Friday and I really did not want to really talk to anyone. Kind of a buzz kill (not something I am used.)

I woke up Saturday totally depressed.

I had only a couple weeks of my life left, as I know it. And I am stressing about what is coming next. And what to pack and such….

I even went to a going away party Saturday night. I tried my best to put on my happy face…but all I could think about was this was most like last time I would see these friends. And it had nothing to do with them coming back to moab.

When I had the plan to live in NYC the plan looked very straightforward with lots of fun activities planned on the way to NYC.

NOW…It looked like I would be in one meeting/test/exam to the next to then be sick for the rest of my “life.” (that is something I do not even want to really thing about)

I sent a message to my friend Jen (who had planning on being my road tripping partner across country) about my rough day and feelings. She sent back that we should still do a small trip from SLC to Jackson Hole or glacier national park. After thinking about for a little bit I realized this could work.

My mood has been better ever since. (more on this later) I went to Salt Lake City on Monday to see about doing a new trial at the huntsman cancer center. This was a study I wanted to do at the beginning of July but it had filled up at the time. It was one of the firstthings I thought of when I got the “bad” news about the study in New York.

Huntsman Center…Overrated.

The Huntsman has this amazing reputation. Which is totally wrong. This is the worse setup facility I have ever dealt with. Including the lack of communication at the LDS bone marrow clinic oh so long a go.

I wrote a little about this in the last update. There is a lot of miscommunication and misunderstanding at this facility. I am curious if that is because it is a university hospital.

First off the parking is horrendous and there are streets going every which way. (UofU is very poorly planned.) I even got a ticket for parking in the wrong section.

You walk into this incredible looking building on the side of the hill over looking the Salt Lake Valley. Seems like a good start right? Then the Security guard is at the desk playing on his Ipad and does not even look up as people come in and out. No real direction of where to go. So we have to find the elevators. (very much not MD Anderson. )

The floors have clinic numbers on them. 2b. no indication what clinic it is. (2b is the Hodgkin’s clinic. 2d I think is breast cancer.) How the hell am I supposed to know that? but there are other floors that are also poorly marked.

So I look on my phone to find the one email I received.

It says “here is the consent form you will have to sign” with a couple of attachments. No this is where you should meet, park, go etc.

The person, Debbie, that sent the email to me did have an office number in her signature. So we thought, well that is where we are supposed to go. So we went to her office. After walking through tons of cubicles to get to the office. (poorly marked office numberalso.) Her assistant then took us to go meet her.

She put us in a waiting room for 20 minutes. While in the waiting room I got a phone call from the dr.’s nurse who was wondering if we where going to show up. We were at the wrong waiting room.

Then we were taken to the back to sign consent forms. When they started to do the blood work the nurse asked for my wristband. What wristband? How did you get back here with out a wristband or registering?  I don’t know. I think that is a great example of the poor organization overall.

It might seem odd to you that I am laying it on thick for how poor the huntsman setup is and yet I still choose to go with them. It is frustrating at first when a hospital is poorly setup but I am not there for the organization, I am there for the treatment and what can be my cure. It does concern me that things might get dropped and I probably will not get as many reminder phone calls. Hell they are the only facility I have dealt with that can not put my records and tests up online.

Other than the runaround my mom experienced. The Staff was incredible. Debbie turned out to be a very good resource and has helped us a lot already.

Dr. Halwani was really great also. He really laid out the differences between the two different trials I am looking at. He also drew us pictures. It was like I was in biology class again. We spent over an hour with him.

There were a couple of things that really sold me on this clinic. One was the huge recommendation from Dr. Houda at the BMT clinic. He really had high praise for dr. Halwani and this drug. I have always very highly of him since my heart clot issue.

This study also has lots more financial help. Not a limiting factor but it really helps. With Medicaid, a more liberal drug company and being in SLC all those add up.

The drug itself has very few side efforts. It does not make people sick. They did have 3 deaths from inflamed lungs, very early on. (I guess that is worse than being sick) There are also some potential issues with liver, and kidneys that they will want to monitor. Overall it is a minor amount.

The schedule seems to be much looser.

The plan would be to start treatment on Aug 12 or 13. I am still waiting to do the pet scan. Once that is complete I will move right to the treatment.

The treatment schedule is on day one: 4-6 hours of infusion and monitoring. Day 2 they test the levels of the drug in my body. Then they check again on Day 8, 15,22. On day 28 if everything is going well I will be start doing the drug every other week for about 2 hours. With the next day, blood work on the amounts of the drug still in my body.

There is not really a time frame. They do not expect anything until week 8. That would also be the first set of Pet scan tests.

I can leave the tests at any time but the drug company is obligated to pay for the drug for at least 2 years.

By the end of the meetings I knew I was going with this trial. I hope I choose this for the drugs affect and not to save another trip to NYC. This just happened to give me another day on my road trip.

I did have to do a Bone Marrow Biopsy. Which requires a giant needle to be driven into my lower back/hip to get bone marrow. It is not terrible but it is not fun and I was sore until…well I am still sore. I then they told me, I could not swim for 48-72 hours…Which I did break.

I also had to drive all the way to Riverton to do a CT scan. So it takes about 35-40 minutes to drive to Riverton from UofU and the scantook 10 minutes. Then I had to drive back. So the plan is tomorrow or Tuesday to drive up to SLC if the insurance/drug company issue is worked out and do the pet scan then probably start the treatment right after that. So Thursday or Friday? I think they want to do it on a Monday or Tuesday. We shall see. (feel like I use that answer a lot. )

In case you cannot tell the reason I am so late with this update is because I had a wonderful time on my road trip. Which included great hikes in Grand Teton, Yellowstone, and hanging/floating the river with an old friend in Bozeman Montana.

On one of our amazing 5 mile hikes (that Tony Dehann suggested) I started thinking to myself. How can I have cancer? I feel great! I felt great the whole time. Sometimes I just do not get how this can be. I feel as good physically as I have. I have done NO physical activity for over a month. And Bam I have no issues with hiking 5+ miles at 7500 feet. Or playing soccer for 2 hours two weeks ago. It really throws me for a loop.

Maybe this next pet scan will come out clear…here’s to hoping.

Thank you’s

I do have two other shout outs I would like to put in here. First is to Tricia Grawet. And her friends Tessa and Shawn Metzger. Tricia read my post from last week and was able to help me get my car into the ford garage that Shawn works at. It amazing acts of kindness like this that make me know the world is right. It seems like such a small thing but it was so helpful in my crazy little world last week. Shawn and Tessa went WAY out of their way to help someone they had never met. Thank you guys.

My friends Kalen and Clarissa. I did not intend really to head all the way to Bozeman but I am really glad I did. Kalen is a friend that I went to high school with me..though we actually really did not like each other in high school. He ended up working for SGRE years later and he became a good friend of mine. It was really nice to see someone I had not seen in a long time and just relax and enjoy life. Thank you two for showing me a different part of the world and your great town.

It is all for a reason.

The other is a random set of happen stance. Jen and I were looking for a camp spot on Thursday night. Every camp spot was taken in theTetons that we wanted to stay at. So we tried one in town that we had called and said they had room. When we looked for them we could not find them. We called again and they were way out of town. So totally bummed, we decided to buy some hotdogs and easy over the fire cooking food (we did not bring anything to cook with.) and headed to the one spot we knew would have spots. A very crappy/expensive/ overcrowded spot just inside the park (with no view of the tetons.) When we rolled up to the camp office I noticed the “Escape Adventures” van in the parking lot. This company operates in Moab and my company; Sheri Griffith Expeditions does a bike/raft combo trip with them. When we went to the door there was a line about 6 people deep. Jen looks at me and says I know this guy. It turns out the Escape Adventure guide is a friend of hers. After a little conversation he looks at us and says don’t camp here. There is amazing free camping about five miles up the road with camp sites that overlook the tetons and have the most amazing sunrises. He was right.

Maybe I am reading too much into it…But shit happens for a reason.

That roller coaster thing....again?

a simpler timer

Just when I thought things were starting to look up. The roof collapses on my head.

My days have been rather amazing this last little while. Packed with family bbq’s, fishing, sight seeing in NYC, first class flight, 2 massages in two days, working my ass off on the soccer field, friend Bdays, Even shot my best round of golf at a very fancy private golf club and the USA even won the gold cup. Everything was lining up arlo. The first time really since May 2012.

Until yesterday I thought I had a plan I could count on. Treatment looked promising, Obe was a match to be my bone marrow donor, had a perfect queens apartment in the works, a classic cross country trip with a great friend lined out, was set to go to a renaissance faire with my cousin Marc.

Then

I received a phone call from Dr. G in New york.

“The trial has been cancel.”

-What?

“We had our second person reach toxic levels. “

-What?

“This means the study has been canceled and now we need to find a new treatment plan for you.”

-What?

I was in shock. Really for the first time I think I have been this confused and lost since I received the phone call that told me I had cancer. (Incidentally that was almost 3 years ago to the week.) I am starting to think July has it out for me.

I did not know what to do. I have not had treatment for 2 Months now! And starting over could mean another month if not more before I get treatment. The longer we wait just cannot be good for my overall success…

I called my mom right away. I did not know what to do. I was/ am really lost.

She jumped right on it and has dealt with basically everything since. She has a good grip on what the different studies are and how they might work. She has help ground me and allows me to bounce ideas of her and working together is good for both of us.

All day yesterday was a blur of changing plans.
• You might still be able to do a clinical trial in NYC.
• You have to fly to NYC to sign consent form for this other study right away.
• Get on a plane tomorrow
• Oh I guess you can sign them and send them to us. (this happen after my mom went all mommy on them)
• Hold on a trial we tried to get in at the beginning of July had opened up in SLC
• Insurance company will not cover “experimental” drugs. Call Patient financial services ASAP.
• Find tax forms from 2012 and 2011 and tons of financial records to send to MSK.
• Up and down up and down.
• And my brand new car is giving me some error signals. And the service center is full for a week.
        o This is a whole another area I could go off on! The Ford dealership not making my life easier. I called on Monday to have them look at my brand new car which is now giving me some kind of error message and says get serviced now. They said the earliest they could see me was Monday the following week. Which was to late but I made the appointment and went on a waiting list. Or so they said. When I called today they had no record for me. Now the earliest they can check the car is Aug 15!

• AHHHHHH

So where does that leave me…

It is still a very fluid situation. By the time this gets to your inbox my plans might have already changed.

Best Guesses:
• Cross country trip is off…for now. Maybe…
• I am going to sign up for both the SLC and the NYC trials.
• I am hoping to meet with the slc doctors tomorrow. Once I have talked to them I will know a lot more about my “future”
• Really is the best I know.

So there it is. What ever that is.

I will throw in a little feelings because I am pretty….messed up right now.

I am really upset about missing out on the road trip. I was putting this together as a kind of bucket list. I was looking at it like a last hurrah before buckling down and being sick for a year plus. I had planned to visit my 90 year old grandma in Oklahoma, maybe a trip to Buffalo River National Park in Arkansas, Maker mark Distiller, Mammoth Caves, biggest ball of stamps you know road trip things.

I guess I should be excited that I might be closer to home. It is also goo that I was not one of those in the study that had toxic levels. I just cant let go of the fun the road trip would have been.

I also was really looking forward to living in NYC. Kind of in that same way I loved the basement of Dasch and Megs’. It was cool experience, something I never would have done otherwise. It was so freeing and a great (probably not the right term there) way to experience something different with little worries. I feel NYC would be the same. I always kind of wanted to live near my cousins and family. I have only spent long weekends and such with them since I was little. But it was always a blast.

So I am sad about those things.

I am happy to perhaps be in SLC. Though I kind of feel like I have been there done that. But it will be easier to pack for that. And I was stressing a little on what to pack for 6 months in NYC.

But hell this all could change again soon.

As I write this I am getting updates from my mom about the SLC setup. Sounds like the Huntsman Cancer Center is not a tight ship.  Yesterday we overnighted my records to the address they gave us. They arrived at 8am. We called them at 10 and the nurse could not find the records. Turns out they got lost in the mail room. (why the hell did they tell us to overnight it and why did they not look for them in the mail room if they knew we sent them!) Then this nurse was supposed to print them and give them to Dr. Halwani who is running the program. When we did not hear back she called the nurse but now she is not answering my mom. So my mom called Dr. Halwani office. They had not heard of me and have not seen my records! They called back and said they will call me this evening to setup an appointment for tomorrow…hopefully. Do they realize I am in Moab?

So now I am leaning to NYC again. But I don’t want to make a decision on paperwork incompetence or rather unfriendly staff at the Huntsman. Or on the fact that I kind of want to be out in NYC. I want to make it on what is going to be the best for my health.

Ok that is all for now. If I do not send this soon, it might be out of date. Which is will be anyway.

I will try and do a little update tomorrow to let you know what is up.

Thank you for all the thoughts and prayers. And I apologize for not getting back to all of you. And I am mostly send to voicemail a lot of your calls. I am just so overwhelmed.