Still in Remission

I went in for my follow up CT scan on Friday. I have not recieved the final report yet, but was able to look at the scan with the radiologist right after I had it done and she said everything looks good. The areas that lit up on the pet scan still show no signs of enlarged lymph nodes. This is a huge relief considering how things have gone in the past. A lot has gone on since I posted last so I'll give a quick rundown.

We sold our house and moved from Columbia to Springfield, MO(into my parents house) for two weeks at the end of October. Then turned around and moved to Oklahoma City(Edmond actually) on November 5th. Yes, we had to pack and unpack the truck twice in a two week period and it SUCKED! I was still not feeling well, had no energy, and no stamina. But, we got through it ok with a lot of help from family, friends, and fellow church members.  We got everything unpacked and in place before Thanksgiving since we had company coming, which was a little stressful since I was still not feeling great and it was such a short time.  Thanksgiving was a lot of fun. We had Jason Canlas' family, my parents, and my brother Todd and his wife Crystal here for 4-5 days. Brooke did a great job cooking her first Thanksgiving dinner and the kids had such a great time with the Canlas boys. We are all settled in and really starting to feel at home here. Our church ward seems great and we are excited to be here for the next 4-5 years.

How am I feeling? Almost like a normal person! I got a cold right after Thanksgiving and that really knocked me out for a few days, but since I recovered from that it has all been up hill. The main things that were still bothering me were nerve pain in my arms and legs (which made it hard to be on my feet for very long) and having no energy/stamina. As of the last week or two the pain is pretty much gone and I am getting my strength back. No joke, until recently I could not remember what it was like to feel normal, have energy, and not have pain/discomfort. This is the longest break from chemo I've had since last October.  I have to admit, the recovery process has been longer and harder than I thought it would be.

I'm feeling better just in time because I start work in 2 weeks! I am nervous, but definitely excited to get this show on the road. I have been doing all the various paperwork, training, and licensing stuff since we leave tomorrow for Utah to visit Brooke's family and won't be back until the 28th. They approved my plan to do my intern year, then take 6 months off and moonlight in ERs etc., and start my anesthesia years in July with the new class of residents. This way I won't have to go any longer without working or not having an income, but I will still be on track with the other residents. That should make my anesthesia training more seemless and easier on me.  

Brooke has really been a rock through all of this and kept our family going. She amazes me in her ability to keep things running smoothly with little to almost no help from me. I'm gonna go ahead and keep her!

False Alarm!?

I met with the surgical oncologist yesterday and he wanted to get a CT scan with contrast to better visualize what he would be trying to biopsy and where it was in relation to the important structures in that area(ie. arteries etc). Well I went in and had the CT scan and hadn't heard anything, so I went ahead and logged in myself to check it out (apparently I still had access however I got an email today saying it was being revoked. Oh well). The report stated the lymph nodes from the PET scan were not visible. So there is nothing obvious there to biopsy and no point in doing the surgery. It was going to be a rather involved surgery since these nodes were deep in my pelvis. Since they don't know what exactly they would be trying to get they wouldn't know if they got it. So a negative result would not really be reassuring. Both my oncologist and the surgeon are not convinced it was a relapse and have decided to wait 6 wks and scan again. Therefore, I am clear for now. It may have just been inflammation from starting to exercise or some sort of immune reaction. There is also the possibility that we have witnessed a tiny miracle, that it was back and the many prayers in my behalf have been answered. Either way it is a huge relief!

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!

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.

Let the Games Begin!

It has begun. I drove to St. Louis Wednesday for my pre-transplant appointment and everything went smoothly. It was good to have a few more of my questions answered. As I said before there is a 50-60% of cure after a transplant in my situation. If I am going to relapse it will most likely be within the first year or two. The doc said if I make it past the 2 year mark there is about a 95% chance that I will never relapse. That was very reassuring. Now I just need to make sure I make it to the 2 year mark with no relapse! It also sounds like this whole transplant deal is going to be even more fun than I thought. My taste will probably be gone/messed up for at least a month, maybe longer. Patients typically lose up to 10% of their body weight from diarrhea, lack of appetite, and nausea/vomiting.(I plan on taking a before and after picture.) Sounds like I will lose ALL of my hair again and it will probably be gone for about 3 months. I don't mind losing my hair except my eyebrows and eyelashes, people without eyebrows and eyelashes just look freaky!

Friday I started my growth-colony stimulating factor (Neupogen) shots and had my central line (Hickman tri-fusion catheter) put in. I am staying with my brother Brian and his family here in St. Louis. I drive over to Wash U every morning and get a shot in my belly or arm and then I go back and hang out with them. I have not had many symptoms from the shots other than some bone pain in my hips/lower back.

Brooke and the kids stayed at home (to get the house ready to put back on the market) and it has already been really hard being away from them the last couple of days. This next month is going to be rough! Though all of this has been a terrible experience I know that it will end up making me a better, stronger, more compassionate person. I hope that will equate to being a better husband, father, and doctor. One thing that has been nice about all of this is the time I have been able to spend at home with my wife and kids. Although I feel terrible and am not able to do much when I'm going through chemo it has still been great to be there when my kids wake up in the morning and when they go to bed at night. Had I started residency at the end of June I would not have had this time to spend watching my little ones grow up so fast. I feel lucky that I've had this time when they are so little and so fun to spend getting closer to them. They are everything to me.

After one of my rounds of chemo in late June I was laying on the couch feeling terrible. I did not want to move. I did not even want to talk. My sweet little Pearl grabbed a book, toddled over to where I was, and then gave me the book and signed "book". She looked at me with her deep blue eyes, smiled and said "Da Da", then signed "book" again. My pain, my discomfort, my fatigue was swept away. When I first saw her grab the book I thought "nope, not right now", but there was no way I could say no to her. I scooped her up, layed her on my chest, and proceeded to read her the book. I could have lived forever in that moment. It is very hard for me to convey the emotions I felt or the beauty of that simple smile and the feeling of my little girl lying on my chest. Experiences like these are precious gems that shine through so much darkness and are most definitely tender mercies from God. It just makes me realize the importance of living in the moment and not always waiting to be done with this stage of life or treatment or whatever it may be. It is so easy to get caught up in looking forward to what is to come that we don't see and enjoy the wonderful things that are happening in our lives right now. I hope to be better able to be present and more observant of the beautiful things and people present in my life each day. These are moments and realizations that I may have never experienced had my cancer not relapsed. Dark clouds always have a silver lining.

What's to Come

So, now that my cancer is back in remission it's time for the bone marrow transplant. I have two more weeks to recuperate and then the process will begin. I cannot say that I am looking forward to it, however I am looking forward to being done with it. The technology and advances that we have today in medicine really are amazing and I'm so thankful I live now and not even 15-20 yrs ago. My transplant will be done at Barnes Jewish (Wash U, Siteman Cancer Center) in St. Louis. So, on to the process.

I am receiving an autologous bone marrow transplant, or stem cell transplant. This means that I will be receiving my own cells, not those from a donor. On the 29th I'll start getting shots of growth-colony stimulating factor, or G-CSF, which will cause my bone marrow to produce stem cells. I'll receive injections for 4-5 days straight and then on the fifth day they will start harvesting the stem cells that will have spilled over into my blood. They will harvest the cells by taking my blood out, spinning out the stem cells, and then replacing my blood. This will be done everyday for 1-4 days until they have enough stem cells. Then on the 8th of August I will be admitted to the hospital and start a very high dose chemotherapy (BEAM regimen) to essentially kill off any remaining cancer cells and my bone marrow for 7 days. This will completely wipe out my immune system making my body unable to fight any infection so I will be on high dose antibiotics as well. Since this also wipes out the body's ability to make blood/platelets there is a good chance I will need blood transfusions during this time. Once the week of chemo is over they will do the stem cell rescue (picture my stem cells in little super-hero uniforms w/capes) and then it is just a matter of waiting for the stem cells to reform my immune system and blood counts. This will take anywhere from 7-21 days. Once my blood counts have come back to normal I will be able to come home (barring any other complications).

So it looks like I will be in the hospital for most of August and it sounds like I'll pretty much be a limp noodle for most of that. Awesome, can't wait! It's going to be hard being away from Brooke and the kids for that long, but at least they will be close enough (1 1/2 hrs) to come visit often. My brother Brian and his family also live in St. Louis so I'm sure I'll see them and they are kind enough to let us crash there any time. I feel bad for Brooke having to deal with the kids and run everything all by herself the whole time I'm gone. 

The doctor said she thought I would be feeling well enough to work full time by the beginning of October, so hopefully that really is the case and I recover quickly. It will be interesting to see what side effects this chemo will have in store for me, as this will be the third different regimen I will have gone through.

Catch Up-Part 2

I had a regular 3 month follow-up  PET/CT scan scheduled after the weekend we got back anyway, so I just kept that appt.  It showed what I thought, a large swollen superficial lymph node and two smaller ones deeper and further up the chain. Luckily there were no signs of disease anywhere else and we had caught it very early. A biopsy still had to be performed and was scheduled for a couple days later. That weekend we had a family reunion at my parents' house.  I got the news from a friend in the pathology department since it was a holiday weekend. It was cancer again. I learned that the next step in treatment would be chemotherapy then an autologous bone marrow transplant and there would be no way I could start residency before October. It was good to be surrounded by friends and family when getting all of this news. Even if nothing can be said or done to help, just the presence of loved ones around helps.

When we got home we took the house off the market, I contacted my residency program, and we set up a schedule for treatments. I was lucky again to find out that one of the most effective chemotherapy regimens that is used for relapse of my disease is done outpatient. That was the treatment the doc preferred and definitely the one I did. Being stuck in the hospital for 5 days at a time was like Chinese water torture. I would receive chemo 1 day every 2 weeks until my PET scan was negative and then move on to the transplant. An appt. was made with the transplant specialist at Washington University in St. Louis since the University of Missouri doesn't do bone marrow transplants. It was frustrating not having any sort of time line and having to try and coordinate how things would be done between the two institutions and specialists since everyone has a certain way they like things done and their own opinions, but everything has worked out.

I saw the transplant specialist at the end of June after 2 rounds of chemo. She recommended doing a PET/CT(to make sure I was in remission,)when we got back from our trip to Utah, one more round of chemo (which I was not happy about), and then waiting 3 weeks to let my body and blood counts recover a bit before starting the bone marrow transplant. Even with the bone marrow transplant all the docs I have talked to have said there is only a 50-60% cure rate. Nothing like the flip of a coin! However, when they say cure, they mean cure. As in, it will never come back.

We went to Utah to visit my in-laws over the 4th of July and had a great time seeing tons of family and friends. I had the PET/CT on the 7th of July and it was completely negative. My cancer is in full remission again. I'm glad, but I'm not getting too excited about it considering how quickly it came back last time and looking at what I still have to go through. I did my last round of chemo before the transplant on the 8th and then had all the tests needed to make sure I can do the transplant (PFTs, Echo, EKG, CXR etc.) on the 12th. Now I just wait to feel better before they practically kill me and then bring me back to life. I'll explain the bone marrow transplant in more detail in my next post. For now, I'm just glad I'm finally getting my taste and energy back little by little.

Catch Up-Part 1

I want to write a post to get up to date on what is going on with my situation and treatments now before getting any more in depth on my journey to this point.

My cancer went into full remission after 2 cycles of chemotherapy back in Nov. 2010. I finished out 4 more cycles of inpatient chemo ending mid Feb. Then took a milder form of oral chemo starting in March for about a month.

Things did not seem like they could have gone any smoother. I was able to finish my med school rotations, do 13 residency interviews all across the country, and match at the anesthesiology program I wanted to go to all inbetween chemo sessions every 3 wks. I graduated from med school on May 14, 2011 and we were off to Florida to catch a cruise to the Bahamas the next day. We were going to celebrate being cancer free, done with chemo, and the end of the long medical school road.

Then, irony at it's finest. About half-way through the cruise when drying myself off I noticed a tender spot on my leg/groin. Upon a little further investigation I determined it was a swollen lymph node and knew it most likely signified relapse. I debated whether or not to say anything to my wife because I did not want it to ruin the rest of our vacation or have her worry unnecessarily. I went ahead and told her. She took it better than expected, but it was still quite a blow. I think telling her affected me more than her. Instead of being able to shrug it off until we got home I was forced to confront the possibilities of what it could be and what we could have to go through over the next months to a year with treatment, moving, residency, insurance, money, etc. Needless to say there were at least a couple of hours here and there wasted to worry.

I literally could not believe it. Here I was, 30 years old, not single health problem before this. I've never drank, smoked, done drugs, and I eat well and have stayed in good shape. I have a type of lymphoma that has been described as the one you would choose if you could because of the positive prognosis. It responded immediately to treatment and had shown no signs of being active for almost 6 mos. The cure rate after 6 cycles of the chemo I had is from 70-94%. Being young, healthy, and the quick response rate should have put me up there in the 90% range, or so I would have thought. Nope, not for me. Here it was, back after only a month of being off all treatments, when I was finally starting to feel like a normal person again. I did not know exactly what this meant for my prognosis (I had not checked into treatment/prognosis of relapse. I figured if I needed to know that it would probably be much further down the road.), but I knew it was not good.

Although I knew it was probably not the case, my biggest fear was that this could be the beginning of the end. Lymphomas can become resistant to chemo just as most other cancers and maybe it had never even fully disappeared. The thought that it might not respond the way it did the first time or at all to the chemo scared me. My biggest fear then and now is that my young children could grow up without their Daddy.

I honestly did not know how I was going to do it. Chemotherapy is TERRIBLE! I hated every minute of it. Losing my taste, my hair, my patience, myself. It would be one thing if this was 1,2,3 years down the road, but after only a month. Not to mention that we were supposed to be selling our house, moving to Oklahoma, and starting residency all in that next month. HOW?

I was able to push the thoughts and fears to the back of my mind and still have a good time for the rest of the trip knowing there was nothing worrying could accomplish.

A Little Context

  That first post pretty much explains what happened with my health and diagnosis, however gives no insight into what else was going on with us around that time. I thought a little context might give a more full picture of what our lives were like around that time. I had just finished my third year of medical school and last written Medical Licensing Exam I'd have to take to graduate. Our beautiful little Pearl was born on May 24, the first Monday of my 3 week break in-between 3rd and 4th year. (It could not have been planned any better)

Mid-June I started my 4th year of med school with an OB/GYN rotation. This was a rotation that I needed to do well in since I was still considering it as a profession. It was a fairly stressfull rotation, but not as much so as the ENT surgery rotation that I did through July. ENT is a lot more competetive field and I had to be on the top of my game if I wanted to learn a lot, impress the residents and attendings, and receive good letters of recommendations. The hours were long and it was a rather strenuous month, but I did very well.

  In August I started a rotation in anesthesiology, the last of the fields I was interested in and able to do a rotation for. This rotation was a little bit more laid back, which gave me the time to start working out as well as getting going on my residency application. Ultimately, I decided my family and I would find the best fit for us in the field of anesthesiology. It was a whirlwind getting all of my letters of recommendation and the rest of the application in on fairly short noticed, but I managed to get it all submitted in a timely manner.
 
  This and the next several months were extremely complicated by the stress of Pearl's condition. She had developed a severe case of silent reflux, which robbed her mother and I of much needed sleep, not to mention changing her whole persona from such a happy, easy going baby to a very needy, fussy baby who gave her mother the worst time with eating. We love her more than anything, but that was a dark time. Seeing your baby wake up in the middle of the night screaming and not being able to calm her down for hours, then when she finally falls asleep only to awaken as soon as she is put down. Insanity thrives on such situations. Her mother is a saint! Because of my schedule, illness, and Brooke's love I was spared from much of the pain of those situations. 

   My load did lighten, which allowed me to help more with Pearl and get some much needed R&R (3rd and 4th year of school were strenuous at times). I took an anatomy course in Sept. that allowed me to finish quickly so we could take a trip to see Brooke's family in Utah. We had a great time seeing family, friends, and just relaxing. However, by the time we left my abdominal pain was almost at it's peak: keeping me up at night, affecting my appetite, and even bothering me to the point of needing ibuprofen during the day.

   During October I had a rotation dedicated soley to tutoring medical underclassmen who needed some extra help. This was a good rotation to have since it was not all that time consuming and allowed me to seek the medical attention I needed without postponing any rotations. October also marked the beginning of interview season for residencies.

How It All Began

  In August of last year I decided it was time to start working out and getting back into shape. I had just finished what would be the most intense part of my fourth year of medical school and was going to have a lot more spare time.

   I began lifting weights, jogging, and playing basketball once a week. Normally, I get to a point where I feel like I'm back in shape after a week or two. However, this time after a month of working out I was still feeling like I couldn't quite get my legs under me in basketball and was still a sore after I'd play and I was not near where I usually am lifting weights. I noticed one other thing, I was having a harder time than usual doing sit-ups. I hate sit-ups and have never been a big sit-up guy, but I could not do near as many as usual and that was not getting any better, and I had a weird feeling of fullness in my abdomen.
 
  One night in September after stuffing my face with my family at Lone Star Steakhouse I was in considerable discomfort. My abdomen was hurting and it did not seem to get much better as the night went on as it usually does after a good face stuffing. I thought maybe it was just gas pains, but I did not have gas and found that no positioning really made it feel any better. I ended up having to take some ibuprofen to sleep that night. From that time forward I began having this abdominal pain every night. Some nights it was worse than others. After about a week of this my wife made me a doctor's appointment for the end of the month because I was in desperate need of a regular check-up anyway. As time went on it got to the point where I was having to take 800mg (4 pills) of ibuprofen at night just to be able to sleep or I would lay there until 2 a.m. twisting and turning trying to get comfortable enough to fall asleep until I did.
 
  After a week or two of the nightly abdominal pain I noticed a swollen lymph node above my collar bone on the left side. Well, knowing what I knew of medicine, I knew that was NOT a good sign. Supraclavicular lymph nodes, as they are called, are a very common sign of abdominal malignancy. It started out as one node that was rubbery and tender, which could be considered a good sign since lymph nodes enlarged by cancer are often rock hard and painless. Soon it was several swollen tender lymph nodes. I pretty much knew at that point I was dealing with something fairly serious. Most likely either cancer or some form of a reactive disease process (think auto-immune disease ie. lupus or something more rare). Thinking back I had also had night sweats on a couple occasions, another common cancer symptom.
 
  My doctor's appointment rolled around and on came all the testing. My initial blood work was all normal except my liver function tests being slightly elevated, so they first went after that thinking it may have been an issue with my liver. Well, after testing for Hepatitis, HIV, Mono, and just about anything else that could have been an issue with my liver we were no closer to a diagnosis. Everything was negative and normal. It was time for a CT scan. I had the CT scan done. (After spilling a good portion of the berry contrast "smoothie" I was supposed to drink, all over myself and my car. Think opening a small bag of chips and pulling too hard--yep just like that.) One of the perks of being a part of the medical field, I've found, is "professional courtesy". When my CT scan was done they asked if I wanted to talk to the radiologist. I wasn't sure what the nurse was talking about at first or why I would want to talk to a radiologist. I knew what the CT scan was all about. After a second I realized they were asking me if I wanted to go watch the radiologist read my scan. Ummmm, YES. They walked me to the reading room where I met the Dr. who would read my scan.

I sat back while he finished the previous scan and talked with him about my medical history. Then, up came my scan. It was not pretty, even I could tell that. He was obviously slightly uncomfortable as he pointed out the para-aortic, mesenteric, retro-peritoneal, and various other lymph nodes that were very enlarged. His first comment was that it was no big surprise that I was having a little abdominal pain. The differential diagnosis was not a surprise to me, lymphoma or some sort of reactive process. He informed me they would need to do a biopsy of the supraclavicular lymph nodes to be able to tell which it was and offered his condolences for having to give me such crappy news. I took full advantage of the "professional courtesy" being extended to me and had them make me a cd with the images since I would most likely need to show the surgical oncologist who'd be doing my biopsy the scan.
 
  I was able to get an appt. with the surgical oncologist and schedule the biopsy within a couple days. The results took another day or two to get back, but I was able to get a preview and even look at the slides with the pathologist.  I was so grateful I did not have to wait as long as most people do to get in to those doctors and to receive the results of my biopsies. At this point I had read up a little more on the different types of lymphoma and knew that Hodgkin's is fairly common in people my age and has a good prognosis and I was hoping that's what it was if it were to be malignant. It was not. The pathologist informed me that after staining the specimen they had concluded it was not Hodgkin's, but Anaplastic Large Cell Lymphoma, a sub-type of Non-Hodgkin's Lymphoma.

  In medicine and with cancer hearing the word Anaplastic with any type of cancer is usually synonomous with a terrible prognosis, so naturally I was a little concerned before doing any research. The pathologist had informed me he himself had had lymphoma in med school and that was over twenty years ago, so he was sure I could overcome it. I soon also found out the type of ALCL I have was ALK (anaplastic lymphoma kinase) +, which is a very good sign. The prognosis for ALK neg ALCL is 20-40% 5 yr survival. For ALK + ALCL the prognosis is anywhere from 70-94% cure rate after chemotherapy. Although this is a very aggressive cancer that also meant it would most likely respond well to chemo. After researching a bit more it seemed like if I were to get a lymphoma this would be one I would actually choose over most others.
 
  Knowing the research, prognosis, the fact that I was young (29) and healthy, and that I am not the type to freak about things or roll over and give up, I was sure I would do my chemo be in that 70-94% who are cured after initial chemotherapy and be able to get on with my life. It seems God had another plan for me. But, I'll get into that later.

  By the end of the next week I had had a port-o-cath placed in my chest for chemo, double bone marrow biopsies, and abdominal pain that was beginning to get pretty bad. I started chemo then. After talking with the Dr. he wanted to be go big since I was so young and healthy and my disease was fairly advanced (stage 3B) so he put me on a regimen reffered to as EPOCH (Etoposide, Prednisone, Vincristine, Cyclophosphamide, and Doxorubicin) that would be administered via IV(except prednisone, which, by the way is the most disgusting tasting medicine ever discovered) continuously over 5 days as an inpatient.  I was to recieve 6 rounds of this chemo every third week (1 week on, 2 weeks off) with PET/CT scans (that check for tumor uptake) after every 2 cycles.
 
  And so, at the end of October I began on this path of hopeful healing. I knew things would get worse before they got better, but I was up for the challenge. I've always believed I could overcome any obstacle that was put in front of me and this would be no different. It doesn't matter how bad it sucks you just do it because you have to, period, there is no other choice and no point complaining about it. At least that was my attitude toward the whole thing.