Home!

I was released from the hospital last Friday in the early afternoon. It has been so much better being home. It is so nice being here and being able to spend time with my little family again.

I have been slowly starting to feel better, but have lost my taste, am still struggling with nausea a lot, and am very fatigued. This is fairly similar to how I've felt after previous rounds of chemo, but I have never had such issues with nausea. Dealing with this stuff at home is 1000x better than being in the hospital, but it is still hard to feel this bad everyday. It wears on me. I've probably said this before, but not being able to taste food/having everything taste nasty kills me! This may sound extreme but I'm a total foody and it makes life dull and void to me. It is by far the worst side effect. I've lost almost 20 lbs. since I went into the hospital. It's too bad I still have a fine layer of pudge where there used to be definition from being sedentary for almost a year now and I've lost quite a bit of muscle as well. I'm hoping my taste comes back soon because I think that will help with the nausea and possibly the fatigue.

Before

After (Brooke says I look like Gollum)

On another note, I went to the doctor today to have my blood counts checked. Everything looks really good. All of my counts are back to normal or close to it. I have my follow-up appointment with the transplant doc in St. Louis on Friday. I'm hoping I can get an appt. to take this stupid venous catheter out when I go. I have had it for a month and it is driving me crazy. I shouldn't need any more transfusions or anything so I think it will just be a matter of if they can fit me in. I don't want to have to drive all the way there again just to have this thing pulled out.

We did get an offer on our house, however it was pretty low and we are still trying to hash out a deal. Hopefully we will know something tomorrow. I'd love to sell this thing so we can move on and start looking for places in Oklahoma City. (Update- Sold the house! We close on Oct. 11)

My Overachieving Stem Cells

Today was day +10 although it feels more like I've been here for a year. Since last posting I have experienced the worst days, by far. Several of which I barely even left my bed or did anything but sleep(in drugged up fashion). I have had a LOT of nausea and even broke my 15yr no vomiting streak, which I am not real happy about.  The shots they've been giving me give me a lot of bone/muscle pain and I'm pretty weak which makes it hard to get up and moving around. They say exercise is the best thing for recovery so I've tried to get out and walk around the floors at least once or twice a day. Brooke has been here on and off with my mom and she really kicks my butt when she's here. I have had to receive 3 platetet transfusions and 2 blood transfusions which is never any fun.(I don't know, I just prefer my own, Thanks.) The last several days I have started to feel a little better. Most of the symptoms are starting to abate a little, except for the nausea, which I am still struggling to keep at bay.

So, on to those stem cells. They were a bit slow to get going but they seem to be roaring now. My absolute neutrophil count (which is the one they are really watching to see if I can go home) has gone from 0 to 288 to 1591. If I'm at 1500 for 2 days I get outta here! So it looks like I'll be going home tomorrow night or have to do some butt kicking and get out of here tomorrow night! I don't care if I still feel like death. GET ME OUTTA HERE! I can feel bad and be nauseous in the comfort of my own home. I can't wait to see my kids, sleep in my own bed, get to hang out with my wife, and not be bothered 5 times in the middle of every night.

Thank you, everyone for your prayers and support. It has meant a lot to me.

On an unrelated note it looks like one of the buyers that looked at our house has narrowed it down to ours and one other. They came to pick up the utility etc. info tonight. So cross your fingers and give us one more prayer if you've got one that we can sell this house. We are ready to move on to the next chapter.

Since Transplant

So, I'll make this fairly short and to the point. I recieved my stem cell infusion on Monday afternoon. Barring a little chest tightness, feeling weird, and having really bad breath from the preservative everything went well. I slept for a couple hours from the meds they gave me, then woke up and was feeling ok.

It has been all down hill since then. It was great having Brooke here to help me get up out of bed and moving and just for the company. My blood counts have now started to drop by about 50% every day and that combined with the extreme nausea and GI upset from the chemo has got me feeling pretty miserable. I spent most of the day today sleeping when I wasn't hurling my guts out or sitting on the pot. It often feels like I have been sucker punched in the stomach and it's very hard to tell what food I will or won't be able to keep down, and how much effort I can expend. I can only look forward to it getting worse for the next few days as my counts continue to drop and I will probably need blood/platelet transfusions so I don't bleed out. I can't believe I am stuck here for at least a whole other week, probably more. BOO! Sorry if I haven't responded to everyone, it's hard to even want to talk most of the time right now.

Why, Oh Why?

I have been meaning to post about this since I first started the blog. WHY? When I was first diagnosed many of the first questions I got were: what caused it, why do you think you got this, are you angry/angry at God, do you feel picked on, etc. etc.

Well, my outlook on the whole thing is this. I do not feel like I was struck with cancer as some form of punishment. I feel like I got cancer because sometimes #$%& just happens, even to good people. Was I angry at God? Absolutely not! My faith in God is much bigger than that. I know that HE has a plan for me that is going to be the best for me and for those around me. He wants me to be happy. If somehow that involves dealing with or even dying from cancer then so be it. I believe we are sent to this life to learn how to overcome adversity, to grow to be more intelligent and compassionate beings, and ultimately more like the Savior Jesus Christ. Adversity in our lives gives us opportunity  to remember and become closer to God and Christ, which is a foundation that is needed to be able to reach out and touch the lives of others. Another reason we are here.

Lastly, do I feel picked on? Quite the contrary. Just amongst my friends, family, and aquaintances I have witnessed struggles I feel put mine to shame. I'm not talking a few, I'm talking many. Through this experience I have learned to appreciate more fully that everyone has their struggles in life whether they be physical, mental, or even things others do that they have no control over. I have seen: a dear young cousin recently taken by brain cancer (you will be missed Tig.), another dear young cousin have a relapse of her cancer, a good friend diagnosed with a horrible autoimmune disease, an aquaintance's infant daughter die while waiting for a liver transplant, infertility, families ravaged by infidelity and divorce, children born with autism, a classmate diagnosed with leukemia and another's husband with lymphoma. All of these disasters to young people in the prime of their lives. It also just makes me realize no matter how perfect someone's life may seem we all have our demons and things we have to struggle with.

Some people argue how there could be a God that would allow such horrible things to happen to his children. To that I say to experience pleasure we must experience pain. How much sweeter is true joy when you have experienced the most exquisite of pain. Those of you who have children know that you don't just give your children exactly what they want all the time. You don't even always help them do everything. They have to learn how to do things on their own, and when they can't, ask for help. At that point the parent helps, teaches, and shows love and the child grows. His love for his parent's grows and he knows he can count on them. It is the same with us as God's children. God does not smite us with such things and then abandon us. He is there.  Ever waiting, ever listening for our pleas. He has experienced our pain and he knows us perfectly. He knows what we need and when, and will give as will benefit us most, according to HIS plan. I, for one, could not go through life believing there is no God. That all of these terrible things happen randomly and we must just deal with them on our own. Seeing what I have seen just makes me believe even more. What a miserable existence that would be thinking there is no purpose or plan to the terrible things that happen in the world. Even if I am wrong, I would rather believe what I do and have hope than not and have despair.

I do not post this to seem holier than thou. That is one thing I definitely am not. These are thoughts and feelings I have struggled with and I know many of those I mentioned have struggled with. These are just my beliefs and feelings on the subject. Through all this pain and anguish there is also so much joy and beauty in this life. I hope I can concentrate on those things and not miss all the beautiful moments.

Day -1

Today is referred to as day -1, aka, the day before my stem cell transplant. Since my last post I have actually been feeling better; not quite as much nausea and a little better appetite and energy level. Brooke came to spend the day with me yesterday, which was fantastic. She is the love of my life and at times I forget how much I just love spending time with her doing nothing at all. She is so  much stronger than I ever knew she could be and that has been evidenced by how she has dealt with all that has gone on over the last year with such grace, beauty, and rarely a complaint. I know I take her for granted a lot, but I hope she knows just how much I love and appreciate the amazing person she is and all that she does to keep our live not only afloat but running smoothly.

It killed my not being able to see the kids though. I miss them a lot. It's just not logistically possible to have them come very often for multiple reasons. Just take a quick glimpse at this video clip and you'll have an idea why.

 So, tomorrow my little stem cells will come to the rescue. It is just like a blood transfusion, but stem cells. It will probably take them about 9 or 10 days to engraft and really start reproducing my immune system. They say the worst days will be the middle to end of this week as the side effects of all the chemo I've recieved over the last week kicks in. This will also be the time when my white blood cells (infection fighters) will drop to zero and I will be completely vulnerable. Hopefully the side effects will be somewhat kind to me and my cells will reproduce rapidly. I'm trying to get out of her by day +10 so I can be well on my way to that BYU vs. Texas football game on the 10th of Sept. Go Cougars!

Here's a lovely pic of my hallway and my room.



Update.

So I am now in the Siteman Cancer Center at Washington University in St. Louis. I've been here since Monday evening. I've already had enough. I haven't felt too bad, until today. Mostly I have just been tired with some mild nausea. Today, I have been exhausted with mucho nauseoso. I have slept a good majority of the day and the rest I have spent walking up and down my one hallway existence. They are pretty much giving me different chemo everyday in hour to 2 hour spurts sometimes twice a day. Since this is such high dose chemo I'm already feeling the effects much quicker than I have in the past. Brooke and the kids went home yesterday afternoon and although I'm already missing them it is much better not having them all here when I feel like this. I can't interact much and the kids just don't understand.
I am hoping that I'll be feeling better tomorrow, but that is probably just wishful thinking. As I continue chemo my blood counts will drop to dangerously low levels before I recieve the stem cell infusion and start to recover. During that time I will feel what serious pain and discomfort are like. As my counts continue to increase I will feel increasingly better. I CAN NOT WAIT FOR THIS TO BE OVER WITH!

Hard Time Starts Tomorrow!

I went in on Tuesday to have my stem cells harvested. The nurse told me I was an overachiever when she got my blood counts back because my white blood cell count was 79,500 (range for a normal person not receiving G-CSF shots is 4,000-11,000) which meant it was even too high for them to give me the shot they were supposed to that day. I was hooked up to the pheresis machine for about 4 hours and they ended up with 8.7 million cells, which is way over the goal of 2-5 million stem cells. I was thrilled they got enough so that I didn't have to stay and do another day of collection. I was finally able to go home. I felt like I had been gone forever.

Me with my stem cells! You can see the tubes by my arm running the blood to and from the machine.

It was so fun to see the kids faces when I got home. Pearl was hesitant to come to me for a second, but then came and gave me the biggest longest hug I have ever seen her give. She then did a little stompy happy dance all around the living room when I put her down. This was a new dance I hadn't seen yet, but it was a good one! She kept coming back and making me pick her up. She was not letting me out of her sight. Henry was so excited too and gave me a huge hug and kiss right away. He had been asking me if I would show him some frogs when I got home every time I talked to him on the phone and I was glad he didn't start right in with that because I don't know where he got that and I had no frogs to show him. Of course I missed Brooke most of all. I hate being away and not being there to help take care of everyone. I am seriously dreading being gone for close to a month.

We are a little crazy and decided the 2weeks before I go in to do my transplant would be a perfect time to get our house ready and put it back on the market. I mean, it's not like there is much else going on, right? So, Wednesday we had a stager/interior designer come in to help stage the house in hopes it will help is sell more quickly. That was interesting. She did a great job, but we ended up moving almost every piece of furniture in the house. Some pieces several times. I also had to put together two tables (one that had a million pieces) and some chairs. All of this was done in an 80 degree house because it was about 100 degrees outside and the air was not keeping up so well. Oh, did I mention that I wasn't supposed to lift more than 5lbs. with my right arm because of the venous catheter. We met with our realtor at 4 and went over all the paperwork etc. Then finished cleaning up the wreck we had made of the house and moving the furniture we wouldn't be using into the garage.

By the time the kids were in bed at 8:30 I was a sweaty, and apparently bloody, mess. I had been bleeding from the catheter site and my badages were filled with blood that was now beginning to leak out. Since it has to be a sterile dressing to keep from infection I was not able to just change the dressing myself at home. So I would have to go to the hospital to have it done. Luckily, I still know most of the nurses up on the Oncology floor and was able to call and have one of them agree to let me come up and change the dressing without having to check in or anything. That probably saved me about 4 hrs sitting in the ER. There are definitely perks to being in the medical field. I guess this kind of stuff is why they say doctors are the worst patients.  

The next day was not much better since the realtor was coming to take pictures. We had to restore the house to perfect condition (a losing battle with children), and I still had to mow the lawn. Luckily, after that things slowed down a bit and we were able to relax and just enjoy being together. Friday morning I took Henry to the snake museum thing at MU and he just loved it. He is so obsessed with snakes now and makes me tell him all of the snake stories I have (which is surprisingly many) before bed at night. Saturday we had our first showing on the house and are still waiting to hear back. I feel so bad for Brooke having to try and keep the house show ready while taking care of our 2 crazy children while I'm gone. At least my Mom will be able to come help her after this week so she can switch places being here and visiting me. Thanks to our friend Leah, who came and watched the kids, we were actually able to go out to dinner Saturday night. Something we have not done in a very long time!

I am not the type of person who does well inside all of the time and especially not confined to a room. I used to tell Brooke all the time that I'm like a dog; for me to be my best self I just have to get out and run sometimes (be it playing Bball, football, fishing, whatever). The moral of the story is the next 3wks to a month are going to SUCK! I am ready for it to be over though. Well, I can do anything once. Hopefully I won't ever have to do it again. This is my last night of freedom. Who knows if I will get any sleep tonight. Tomorrow I start my sentence.