One Year

Brandon has made huge strides the last few weeks. This last week he went on his first bike ride, outside, on a real bike! He did so great and it was so fun to see. Brandon has been working so hard to rebuild his strength. He works out with a trainer twice a week and then goes to the gym and swims or rides a stationary bike the other days. It has made such a difference! He has much more strength and energy.

It's amazing to realize how far we have come when he does the most simple of things like bend over to pick something up, help me carry groceries in from the car or ride a bike. I never thought we would get to the point of being able to do pretty much whatever we wanted, but here we are!

Last Friday, April 2, was the year mark of Brandon's diagnosis. It has been such a big year. We've gone through terrible downs and amazing highs. The Lord has blessed us with a new perspective on life; to never take anything for granted. We are so blessed to be able to go through something where we get to see how many people care and love us. Thanks again for all your support. We couldn't have done it without you.

Love,

Katie and Brandon

Full Remission

It has been a long time coming, and the journey is far from over, but we couldn't be more happy to be in remission right now.
For those of you like me about a year ago, to hear I am in full remission sounds like a good thing without a doubt- but I was never really quite sure what that meant? I used to think "why can't cancer patients just say I am cured, I know what cured means, what is all this partial remission, full remission, relapse mumbo jumbo". Now I know what it means and why they say that, and I can also say that full remission is certainly where you want to be, but you are never really totally out of the woods, and at least for my cancer you are never totally cured. I was in partial remission which means there was a little bit of cancer left, barely enough to notice. I am now in full remission which means with all the fancy tests and bone marrow biopsies they couldn't find any cancer at all. There is always a chance that it will come back though (which is a relapse), that is why you are never just cured, and why I will have to get tests done every three months for the next year, and every six months for the rest of my life to make sure it doesn't come back.
This is definitely where we want to be and any cancer patient for that matter, but from what I have heard it can be a little scary at first because you don't ever want to find the cancer again and have to go through chemo, transplants, and everything else that goes with it. Then you realize you can't live your life in fear and have to get busy livin or get busy dying as they say in "Shawshank Redemption". I choose to get busy living since I have always had the attitude for some reason or another that we would make it through this. It is kind of a sobering thought to think you could actually have died, not from some freak accident, but that following probability and statistics that you should be dead. On the same note however, how refreshing to know that you did beat the odds with the help of a wonderful wife, an amazing family support group, wonderful friends, and even the kindness of complete strangers. All of these people came together to be a part of a miracle which took place through you, pretty cool. How do you say thank you for that? Obviously it is pretty hard to really show how much you really appreciate everything that so many people have given and done for us. I have personally taken the attitude that I can hopefully show you all how grateful I am for your help by the way I live my life and the kind of man and father I become. With all the goings on of the past year and even up to this day, I have had a lot of time to contemplate everything that has been done for Katie and me, and not only is it amazing and I am overwhelmed with gratitude and love, but I also feel there is so much good out there and people and just so kind if you just give them an opportunity to show it. So thank you from truly the marrow of my bones for your love, food, fasting, prayers, visits, cards, and every other form of support that you have shown us in the past year and for many years to come. I will keep reporting to keep you updated on what is going on but hopefully there won't be too many changes if you know what I mean.
As for right now, I am going to physical therapy twice a week and making some great strides towards getting my strength back. I was able to finish my schooling and get my MBA at the end of last year with the help of some wonderful professors at Westminster, so now I am looking for a job and some benefits. I am happy to say I have some leads and should be joining Katie in the work force before too long but nothing is official right now. We have moved back into our condo on Foothill Drive, I am driving a little on my own, and we have even started going back to church little by little. As life begins to take more and more of a familiar setting, I am even more grateful for the simplicities that I used to take for granted. Being able to feed myself and eat what ever I want are high on the list. To be able to go for a drive or get outside when ever I want is certainly better than being restricted to wandering up and down one hallway in the U of U hospital. To be able to work my body and lift my legs as they were made to move is truly a wonder. Even simple things like tying my shoes, although still a little painful, brings me a new simple joy that even I can't explain. I am sure I could go on and on, but this post is already much longer than it should be and most the people reading it will have lost interest- so I will close by saying thank you again for helping me achieve these things once again, and for bringing me full circle in a journey that was frightening, monotonous at times, and simply wonderful at others; and when I got back to where I thought I had started I realized I had traveled further than I could have ever imagined.

Happy Holidays

I promised a friend of mine that I would update this, so here I am.  Sorry it has been a while, but nothing too new and exciting has happened lately, which is probably a good thing.  We are still in the maintenance phase of the treatment so I am up at the Huntsman every other week, and doing Physical Therapy a couple times a week if I can schedule it in.  Everything seems to be improving these days, I am still a little sore in my back but my strength is increasing every day.  Christmas was great, my whole family was in town so the best part was just having everyone together.  Experiences like this one really help you put everything into perspective, and it is a little easier to focus on what Christmas is all about when you are literally just happy to be there.  We had fun going to a few Christmas parties and hanging out with friends and family too, even a traditional Christmas puzzle thrown in there.

It is kind of an interesting thing going through Christmas while you are getting treatment.  You go up to the clinic and see all the other patients at different stages in their treatment too, and in my case you are just happy to be where you are.  I am really so grateful to have Katie and my family looking out for me.  It is easy to get into a negative funk and start feeling bad for yourself, but with so many people around that I love and care for I am blessed to to not get too discouraged.  To sum it up, something strange about cancer helps you to be a little more grateful for the simple things in life, and makes worrying about being stuck in traffic or holiday drama seem quite trivial.  Not that I don't get stressed out too, but hopefully it isn't as intense as it was before.  I want to say thank you as well for everyone who has expressed concern for us and helped us out in any way at all, especially the mystery Sigma Chi brother- we didn't get a chance to thank you but I can't say how kind and thoughtful that was.  We really have been the recipients of so much love, which is amazing to be a part of, especially at this time of year.  We hope everyone has a fun and safe new years and look forward to a more relaxed 2010.

Love Brandon and Katie

Where we are now

This is kind of a "where are we now" post because nothing really exciting has happened recently, but that is probably a good thing because strangely enough an "exciting" night for us usually starts with a 103 degree temperature and ends with me in the hospital. That being said, things have been going very well for us since the whole swine flu ordeal. We met with the Doctor to discuss our maintenance schedule for at least the next year, maybe longer depending on how we do. This next round consists of me going up to the clinic twice a week, every other week to get a Velcade push. This means they will "access" my port (which means they stick tubes into my skin basically allowing them to draw blood as needed and give me chemo or any other drug), do some blood tests on the first visit of the week to see where my levels are (these are various levels they test in my blood to track things like white blood cell counts and other things I don't know much about) and give me Velcade, which is a very small amount of a drug that is part of my chemo regimen. On top of this I have a long list of pills that I take every morning and every night, as well as a daily shot to keep my blood from clotting. There are minimal side effects which is very nice, the worst part is probably just having to go up to the clinic every other week, but we realize it could be worse. This will be our routine for the next year, and then the Doctor will reevaluate me and we will go from there. Right now, I am in partial remission but the Doctor thinks after about two months of this maintenance program I should be in full remission, so we are keeping our fingers crossed. I am able to move around without a cane on my own now, and I have started to work with a physical therapist who is trying to strengthen my muscles and get me back to somewhere that at least vaguely resembles my old life. This last phase of the treatment is not easy, but it is nice to see the end in sight. With most of the cancer gone it would be so nice to just go back to normal, the way things were, but we realize that is going to take some time and that it will never go back to exactly how it was before, but that is not necessarily a bad thing. It is good to have the holidays approaching and have a chance to see and visit with family and friends, and focus on the important things in life once again. We have learned throughout this experience those important things are the special people around us, and the relationships we build with them. When you are put in the kind of circumstances we have been through this past year, you realize nothing else really matters, nothing in the world. We are so grateful for all of the progress I am making these days, and we really appreciate all of the continued support, treats, cards, and love that is shown to us every day. Thank you so much to all of our friends and family, we love you more than you will ever know.

Brandon and Katie

Doing much better

For the last couple of weeks Brandon has come down with a nasty case of the flu.  Although his test results never came back (weird) his doctor said he was 98% positive it was H1N1.  It really was a rough one.  I felt like we were back to our chemo days because Brandon was so nauseous and couldn't eat anything for almost two weeks!  Getting swine flu has been one of our biggest concerns since his immune system is so low, but now that he has had it and recovered we don't need to worry so much.  It's experiences like these that remind us just how susceptible Brandon is to germs.  It sure keeps us on our toes!  

This explains everything...

YARD SALE!!!

Fishing

Home and building strength

I figure it is about time for another update because things seem to be going really well, and I want to share the good news with all of our friends. A lot has happened in the last few weeks, I came home from the hospital two days after I checked in, which is hard to do-they usually like to keep you there for a while to make sure you are really better. The problem, as previous entries have mentioned was that I wasn't getting enough oxygen to my lungs so I had the privilege of carting around one of those attractive green oxygen scuba tanks on wheels (just like my grandma has). I always thought they didn't look that bad, but I am here to say it was no fun, yes I was happy to be breathing without any trouble, but I was so happy to be rid of that little barrel of fun after only a week that I couldn't believe it. I have a deep new found respect for those who have to cart those around where ever they go, and have the giant R2D2 industrial noise maker at home that creates pure oxygen from room air (if you have one you know what I am talking about). When that adventure was over we saw my Doctor, who said that things were looking very good and we wouldn't have any more chemo. There was a chance I was going to do another round of a lighter chemo called depace, but the Doctor opted out of it and said that I was doing so well it would probably do more harm than good. We will know the exact status of the cancer in a few weeks when I go back in to have a bunch of tests done and another bone marrow biopsy (that is the really fun one, just a big needle in your back through the little hole they just made in your bone). It is actually not too bad, and I am really curious to see the results so I am kind of looking forward to it in a weird way. In the mean time I will be on what they call oral chemo, which is basically a bunch of pills that are not nearly as rough as IV chemo, and I will be on that for another year or two. Right now the Doctor said my cancer counts (shown from the blood tests) are so low that I am in partial remission, and on the other side of the coin my white blood cell counts are up, which is good, so I am almost back to a healthy immune system! All very good news that we are thrilled about!! I guess I will need it because I think I am coming down with a small cold of some sort, so keep in mind I love visitors, but you still need to be healthy when you visit.
I have had the chance to get out a little more and take advantage of this awesome weather, I suppose you can only keep me couped up inside for so long before I have to get out. Katie and I have been taking walks around the block to help build up my strength, and it has been very fun. I even went fishing last weekend and thanks to Sato and Rylan I even caught a fish!
I am also seeing a physical therapist right now who has me working out on a stationary bike for half an hour a few times a week and doing some other stretching and really light weights on the other days. It has been a lot of work, and it is hard to start all over again, but I am starting to see some real progress which is always so nice to see. I know we are so lucky to be where we are and doing so well. As you might have noticed, I am feeling better both physically and mentally, and am even back to joking around a bit as I used to. We wanted to thank everyone for your continued support, notes, and love. It really means so much to us, as we are not totally out of the woods yet, but certainly could not have gotten to this point without all of you.

Thank you so much,
Brandon and Katie

Shooting Star

The star patient has now become a shooting star as far as I'm concerned...I can hardly keep up with him! Brandon returned home from the hospital on Saturday afternoon and is now in full recovery mode. He has his oxygen with him at almost all times for the time being until his lungs clear up and get a little bit stronger from this whole engraftment syndrome thing. But, I have to say, the length of the oxygen tube is rather impressive, so he can still be quite mobile without having to worry about where the tank is. He went in for blood tests on Sunday morning and everything looked good enough that he didn't need to get any additional blood put in to help his counts or anything. So that was really good. His next appointment is later this week, so we'll see how that goes and how everything is looking then.

He is not even a couple weeks out from the bone marrow transplant, so his immune system is still pretty low and all his energy is going towards rebuilding it. His appetite is coming back day by day, and hopefully in the next few weeks he'll once again have the energy to get back into his exercise routine. (Personally, I have no doubts!)

Ryan and I were able to get out to UT for the Labor Day holiday weekend and were once again amazed at the progress Brandon has made as well as his continual "can do" attitude. I think because Doan has done so well over the past few months and has proven that he is strong and capable of taking on just about anything, it is easy to take for granted how HUGE each of these treatments are and what a BIG deal it is that he crosses these hurtles one after the other. I don't think I'll ever be able to complain about anything again when I'm around Brandon and Katie. They are such great examples to me of "when life gives you lemons, you make lemonade!" Some of my favorite things from the weekend were seeing Brandon smile, laugh, crack jokes, add a little dry sarcasm to a conversation, and call Katie his sweetheart. Keep it up guys- you're amazing!