Relapse

I have not written in a while because we have been very busy trying to get things ready for the move to Oklahoma City. We went down there twice for several days looking for homes. I also went down to Austin, TX to see the BYU vs. Texas football game. Needless to say all of that driving, standing, and the long days were pretty hard on me. I have continued to recover slowly from the bone marrow transplant. The nausea is much better (although occasionally rears its ugly head) and my taste is pretty much back to normal. I have still not had much energy or stamina and am having some fairly significant nerve pain in my arms and legs. This is all supposed to get better with time......... There's just one thing. At the end of last week I noticed soreness right around the area I found my last relapse and upon examing felt like I could possibly feel some lymph nodes. I saw my Doc and he said it would un, un, un, unlikely that it would recur this fast after the doses of chemo and transplant I received. However, a PET/CT scan today showed several new areas of uptake suggestive of recurrence. So........... I get to start the whole process over again for the third time in almost exactly one year. They will do a biopsy of one of the nodes at the beginning of next week to confirm the diagnosis before I start treatment (chemo, drugs, another transplant etc.) once again. Needless to say, there will be no moving to Oklahoma, I will, almost certainly, not be starting my residency in January, and since we have already sold our home here (and we have no income) we will most likely be moving in with one of our parents. Not to mention this is definitely not a good sign for my prognosis. Yep, somehow my cancer did not get the memo that it is supposed to be "Not only highly treatable, but highly curable" especially for someone with all of the positive prognostic indicators I have. It is definitely part of me, it is persistent! I'll post more when I know more. It's hard having a large obstacle in your life like this that cannot be overcome by just working as hard as you can to resolve it. I am not used to that and don't know that I ever will be. I am still far from dead, though, and am grateful for what I have. It could still be much worse. Maybe it will be, I don't know, but we'll cross those bridges when we come to them.

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!