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.
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.
On 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.