I have been meaning to write this email for a solid week now. Those on Facebook know that I have had possible the best week since last spring. I think I put it in a previous update that when I am feeling good I don’t update as much. Well I think that was the case, plus I had to get ready for my first overnight river trip in 2 years. And that will always make me feel great.
I apologize to everyone wanting to know how the new drug went. (Spoiler Alert: The update on the drug is at the bottom.)
From the response I got on the last email I can tell I was way to negative.(though lets be honest I had a pretty decent reason to be bummed.) I want ever one to know: I AM NOT GIVING UP. I was just being realistic. I am going to fight and do as much as I can to heal myself. I did not mean for my email to sound so defeatist. I just refuse to take treatments that are just going to make me sick with very little chance of success. I want to do as many fun things as possible while living the longest I can. (I guess we all do) I did get offers to stay/visit all types of places from Puerto Rico, to Grand Canyon trips, to Montana and even first class flight offers. So I guess my last email was not a total loss. Now I just need to take up some of those offers. Anyone live in Hawaii, Middle fork permits, trip to the moon?
This next paragraph is rather similar to an update I wrote in the summer. But since I am closer to death than ever it feels appropriate to put these thoughts in my head back into another update.
Something I want to reiterate is that I am not afraid to die. This is something I have been thinking a lot about. And not in a negative light for myself. As long as I can live a fun, and active life for what time I have left I will be rather happy for myself. Do not get me wrong, I want to live another 30+ years, have a family and worry about racking the yard. But I am fine with dying in a year or two if I can LIVE up to that day (plus I really hate racking the yard anyway.) The hard part for me is You. As I am fond of saying “I am not worried about dying because what do I care when I am died. I am died.” But it’s my friends and family that I worry about. If the roles were switch and Zach or Obe(or any of my friends or family) had cancer, I would be beside myself. I feel this disease is not that hard on me (though the radiation really did suck) but really hard on my friends and family. You are the ones that have to think about me while am gone.
So really I am the lucky one.
I have had many conversations over the past week about my future. Whether it is succession plans at work or just talking to friends about life, it is odd to talk about everything is in a very short term prospect.(On a slight side note. I think I should buy a new car. So I can have a new car once in my life even if it’s just for a couple of years. I wonder if I can talk Dad into getting a Porsche?)
Obviously everyone on our San Juan trip wanted to know want was going on. It was very refreshing to talk about it with friends and open up a little. That also could have been just feeling good and being on the river talking. (sometimes I think I was a little to open for their comfort.)
All that being said. I was in a bad place after having been sick for weeks. And then getting news that the cancer grew and spread in my lymph’s, in my lungs, and in my bones did not help my mood.
But the drug (sgn-35) infusion went great on Tuesday Feb 21. Obe went with me. They also gave a drug that helps strengthens bones. I guess the bones with cancer are more fragile. Which is a problem since there are two active spots in my neck on T1 and C1. Along with my right shoulder and left ribs. My neck has been a huge issue. I could not get out of bed on Monday Feb 20. I had to sleep in a sea collar for a week. But the drug instantly made this better to the point that now I don’t have to take pain meds.(which I was devouring, just to get out of bed.) It’s still there but getting better each day. The week before the treatment I had a soccer tournament. I could hardly run and it really was a bummer that I could not help my team out.
This really leads me to what I have been talking around, and probably should have started with. (Damn, I wanted this to be a happy email.) Anyway, I instantly felt better after the first round of treatment last week. I woke up on Wednesday with a whole new attitude. I did not feel tired. In fact I had a ton of energy, and motivation. It shrank my lymph in my arm. Which is not uncommon. All the first rounds of chemo I have done have shrank the lymph’s. But the more exciting part is my energy is way way better. All of which I have not had in 7 weeks if not months. On my river trip on the San Juan I was able to really hike. I felt like my old self.
Even the ladies in the office noted that I had “More pep in my step” just from Monday to Wednesday.
I don’t know if this drug will work. But I feel confident that it will keep the symptoms down enough for me to enjoy life while I can, which means I should be able to swing my Grand Canyon trip. ( Which is one of my priority for the year, It is up there with visiting all of you) And I am decently confident it will cure me all together. I can not wait to tell my hospital stories in ten years.
I have read a couple of blogs from others that are also going though the same drug. There are some side effects and they vary greatly. The worst two are 0 white blood cells, so you have to take drugs to boost your immune system and be really careful with getting sick. The other symptom numbs your finger tips and can grow to your arm. That would suck to get. Especially if I have to row the Grand.
This is a really rambling update. I hope I have reassured all of you of my commitment to my life. And want you all to know I love you very much and appreciate all the advice, diets, prayers and cure alls that are sent my way. I really can not do them all but I will try and I have improved my diet to improve my immune system. I do not pray. But I truly appreciate all of you that do for me.