GVH

So in my last post which was about 2 weeks ago, there've been some changes. First my appetite went down significantly and I was suffering from fatigue along with diarrhea and nausea. It was definitely a bummer having gone back a few steps, but GVH isn't all a bad thing. It will go away and it increases my chances of cancer NOT recurring. Aside from that my hair is growing back and I have a mustache that Tom Selleck would be proud of.

CNS

Here's a belated post:

This past Monday I learned that I no longer have CNS (which is where the leukemia had moved to my central nervous system and had moved to the brain). I just have to have 5 more spinal taps. One every two weeks. That should bring me to February. The great news is that it looks like I'm completely cancer free. I don't want to jinx anything or sound like I'm talking about a perfect game in the top of the ninth, but all signs are pointing in the right direction. The best news is that the Giants beat the Cowboys this morning. I think Christmas come early.

The next thing I need is to get this catheter removed from my chest. But one thing at a time.

I survived leukemia

From my previous posts I had mentioned that I was having a bone marrow biopsy. This test was to determine whether I still had leukemia in my body or if Sam's cells had attacked them and run them off. Well it was the latter. I got the news this morning alongside my wife and dad. I've never cried like this before. What a monumental day! Dec 2nd! I also heard a really good quote from the nurse which is a truth, "cancer isn't a death sentence, it's a character builder". I couldn't agree more!

Thank you to everyone who has been reading this blog, my friends, family, my wife and most of all my brother. I did not do this alone. And I'd also like to thank my doctors and nurses. They're the ones who beat the cancer, I just survived it.

I will continue to update this blog with my progress towards my goals. As well as the status of my health. I actually have another spinal tap on Monday, so maybe I'll get some more amazing news next week.

My MRI was negative

What a huge relief. This doesn't mean that the cancer is gone, but at least it's undetectable to the MRI machine. Additionally, I had my bone marrow biopsy yesterday. That hurt a bit more than I remember. I'm glad it's not a daily routine and instead a monthly routine.

I should get the bone marrow biopsy initial results tomorrow.

This coming week

So I got a big week starting tomorrow. I get to start Monday with an MRI to see how much CNS (central nervous system cancer) is still present in my brain so we can determine how many more lumbar punctures I need to receive. Btw, these lumbar punctures are not comfortable, so I'm hoping it's just one, but whatever it takes, right? Then on Wednesday I get my first bone marrow biopsy since the transplant. There's another procedure that's not that comfortable. This is going to determine whether or not the leukemia is still present or if Sam's cells have taken it out. I have confidence in my brothers cells.

In any event, I should get results on these procedures within the week. Knock on wood.

Happy thanksgiving!

I'm obviously out of the hospital well ahead of schedule and I made my goal of having thanksgiving at home with my family.

Thank you all for all the support during the past few months. You have no idea how much it has helped.

I'll keep you posted on my progress, I just wanted to wish everyone a happy thanksgiving!

Now I'm going to eat my weight in turkey.

Z

Wow do I feel better today

My tailbone had been hurting me so badly the past couple of days from my last lumbar puncture (spinal tap). It from the chemo running up and down my spine. When I went to the doctors yesterday they prescribed me some pain killers and I feel so much better today. Did some push ups, curls, tricep extensions. My mother in law finally put the kibosh on me doing anymore exercising for the day. But I snuck some more in...shhhhh.

So I was supposed to get another lumbar puncture next week, but my doctor wants to give my body a bit of a rest after all stress the last one put me through. However, next week I'll get another MRI to check out my brain as well as get my first bone marrow biopsy to see if the transplant got rid of the leukemia. It had better be gone. I have a feeling it will. And then we can just focus on getting rid of the CNS and I will be better than ever.

On top of this I calculated my weight from yesterday bc it was taken in kilograms (has the US finally converted to the metric system). I have officially lost 30 lbs. I weigh about 155 lbs. A bit less than I want to be but, gives me a clean canvas to build my body the way I want to. This is going to be one of those transformations which I won't take for granted.

I'm also looking forward to going back to the hospital when I'm healthy and talking about my experience with people who are going through this transplant process. I owe so much and it comes down to giving back. And I intend on doing that in spades.

If anyone out there is going through a similar experience or has a friend or family member that just wants to talk about this, I'm all ears. Nobody should go this blindly and if I can provide some insight, I'd be happy to help.

My first out patient drs appt

My mother in law took me to my first out patient doctors appt this morning. All was going ok. Got to the doctors, they drew some blood and I threw up. Probably not the type of news you wanna here, but it's part of the process. Some days I just wanna shut down, go to sleep and hope tomorrow will be better. Lately my thoughts have been swirling. Mostly around mortality. My mom was 15 years older than I am now when she passed away. It's tough not to think about this. I also think about what the doctor said before I got released. We're looking to increase your life by 30 - 50 years and not 5. I just keep thinking what if I never got that bone marrow biopsy in late august. It's tough to get the what if questions out of my head.

Life changing events don't come around every day. I'm not saying that I'm happy this happened to me nor would I ever want to go through this ever again, but this has been my biggest challenge and I love challenges. I can't wait for everyone to see me when this is done. My life is going to be so different, but for the better.

I'm out!

So I got released from the hospital yesterday. Well ahead of my goal. My goal was to be home by thanksgiving. You know what I love about goals...exceeding them. This is just the beginning of what I plan on doing from now on.

I still got a long road to recovery and my energy is way down, but I'm eating solid foods and am beginning to do some light exercises (thanks to the nudging of my wife and mother in law).

So the next goal is to be on the slopes by march. As well as back at work becoming the top salesman.

Day +20

So I just got some great news today. My doc said I should be released by tomorrow. This is well ahead of my goal as well as starting this second round one week later. Positive thinking. Like chevy chase said in caddy shack. Be the ball...na na na na na.

I still got a bit of a road ahead, but that's expected. What a journey!

Day +19

My numbers are going up rapidly and my tree of IV bags is getting smaller and smaller. I'm starting to eat on my own, which is big since I plan on eating my weight in turkey next week. Can't wait to get out of here and I can see the finish line. I will be under caregiver asst for about 2 months and then I'm hoping to be back to my life, just better than before.

I know I've stated a bunch of goals, but I came up with a few more. One is to be snowboarding before the season ends. The other goal is to share my experience with patients who are going through what I went through. But to be very encouraging. I met with 3 survivors since being admitted and noticed that the first two had been so down trodden and didn't really provide much positive reinforcements. The third survivor was a 77 year old chipper guy who had his transplant the same day as me 11 years earlier and was skiing by march. He was so encouraging and I realized that I want to give back the same way as the last survivor. He was so positive and I know that I can spin my experience to show that life doesn't end at cancer but actually is renewed.

What to expect if you or family member or friend gets leukemia

So my brother had a great idea to inform you of what to expect if you end up in my situation.

First of this is a stressful situation, and not just for the person going through this, but also your family and friends. So I'll tell you what I've experienced but also give some suggestions on how to make a negative situation positive.

So I got diagnosed in may of 2007 and because my leukemia was diagnosed so early I wound up being on chemo meds for about 4 years. I was very embarrassed to tell people about this condition except my family and close friends. I really didn't want people seeing me in a different light, that being a cancer patient. And that is really up to you. I wouldn't go into a job interview and spill your guts, but it's not a bad idea to tell your boss because there's a chance you will need a bone marrow transplant at some point and that's when the cats out of the bag. And I'll tell you, you'll realize how many people want to be there for you. It's a very humbling experience. But let's skip ahead to when I first got admitted for my induction chemo. The point of this is to kill all the cancer cells in your body. It's a stressful time, but one thing I would recommend is using this time to (1) asking a lot of questions. This is your body and you should what is going in as well as all the changes you're experiencing, I.e loss of appetite, having a chest catheter being pumped with chemo, fluids and antibiotics. The second thing I would recommend is doing things you might not already do such as read, learn a language, blog about your experience so everyone close to you knows what is going on and setting goals for yourself. The one goal I would avoid is the time you'll spend in the hospital. If you make timing goals, I can pretty much guarantee that you'll be disappointed. The third thing I would recommend is stay as active as you can. The better shape you're in, the quicker your recovery.

Now let's discuss being admitted and going through the bone marrow transplant. This really is stressful, so when you get your psych evaluation and they recommend you going on anti depressants, do it! This will be the toughest thing you'll ever go through, so if you can do it on an even keel, all the better. So I had an allogenous transplant which means the cells came from someone else, in m case my brother. You'll be asked at some point, well before being admitted to search for a match, starting with family members, but you can been get your cells from a babies umbilical chord, so don't fret if it doesn't come from a family member. And don't be nervous to get a second opinion. Like I said this is your body and who cares if you offend anyone. They're not living your life.

So for my second stay, I had to get 2 days of chemo and 4 days of radiation before getting the transplant. Some of the side affects are the worst mouth sores you'll ever experience, vomiting, and diarrhea. You'll also experience major fatigue, but try and push through and at least walk. Otherwise you'll end up with muscle atrophy, which means you'll probably end up in PT afterwards which is not where you want to be. So staying healthy and active before and after this experience is VERY important. It will make all the difference.

When you get the chemo and radiation you might not feel the affects right away, but you will. And the bone marrow transplant is nothing like it sounds. what happens is the chemo and radiation kills your bone marrow as well as your immune system. The transplant is just a one time, maybe two times of getting stem cells which will become your new immune system because your first immune system obviously couldn't prevent the cancer. The whole transplant process isn't bad, you'll probably pass out while it's happening. It looks like you're getting a bag of blood over a 2 HR process. The next day or even a few days later is when you'll start to experience the side effects I mentioned. For the cold sores, be sure you're constantly swishing sodium bicarbonate aka water and baking soda to help keep the sores to a minimum. And they will heal as your counts get better. What I mean by counts is that your neutrophils (baby white blood cells) as well as your adult white blood cells will go down to zero so that the stem cells can start binding to your body. This is when fatigue will really set in. So don't be scared to ask for help. You'd be foolish not to. Diarrhea will set in so this is not the time to be self conscious. Get it out. Drink lots of fluids and try to move around if you can. And don't be scared to take pain meds. You won't get addicted and they really do help you as you go through this process. And if you don't think something is right, tell your doctor. In my case I kept getting these horrible headaches and it turned to be CNS in the brain which is not as bad as it sounds. If you do end up with CNS you'll have to get some lumbar punctures (spinal taps) where they'll push some chemo into your brain a couple of times. Hopefully, this won't happen, but just in case be persistent with your doc about getting an MRI. If your claustrophobic, take lots of drugs before going into the machine.

This is about as much as I can tell you at the moment, except, take advantage of all your resources, such psychology visits, transplant survivor visits, etc...

I hope this helps. And always feel free to use me as a resource. This is a scary time and every experience us different. But I you have just a bit of knowledge as to what to expect before going in, it will make a world of difference. You won't be the same when you get out the other side. You'll be better.

Day 17

I'm now 17 days past the transplant and my numbers are rising like gangbusters. I'm feeling good and can actually focus which has been a problem for me the past two weeks with all the drugs I've had pumped into me. All my docs think I'll be out of here in a few days. I just need to get off the machine and start taking all my meds orally as well as eating solid foods which I haven't done in about 2 weeks. Also, I just need to keep my physical activity up. But I'm excited to get out of here and never see the inside of a hospital again!

Day 16

So, it's been a while since I last updated my blog. In any event, it is now day +16 and I am no longer neutrophenic. This is huge. The idea of me going home before thanksgiving is still a possibility. I gotta tell ya, I can't wait to get out of here.

Day 12

So day 12 has come and gone. I'm getting there. The side effects I think have peaked out. Just still fatigued, yet walked a half mile today.

On another note, I was walking to the bathroom the other day and before I could get there I just blacked out. Maybe for a second in front of the nurse in my room. It didn't hurt. I felt like everything was going slow motion...matrix style.

No other big news except that my counts bottomed out on Sunday and their up 140 by today. I can discharged once my counts exceed 1000.

Shot in the dark...I'm out by the weekend???

Wagers?

Day Plus 7

Now it's beginning to get rough. I have been having violent stomach pains and have thrown up twice in the past two days. I really hope this gets better. I am so exhausted and just want to get to a point where I go through a day without incidence. Dreams are what make life tolerable.

Day Plus 4

So I made it through the weekend without incident and feel pretty good, given the circumstances. My main hurdle right now is my energy. I have very little. I'm moving like a sloth and get worn down quickly. My doc said I should try and do 10 mins of exercise 3 times a day. So I rode the bike this morning for 10 mins. It wasn't at a high pace or with the tension turned up to 10, but it was good cardio none-the-less. I felt an increase in my heart rate and that's the goal.

I'm going to get back into my initial goals which I have avoided the past few weeks. So Spanish, reading and getting emails compiled for work are now at the top of the list.

I also had my second spinal tap yesterday. It went much better than the first time. I think i have 3 more taps to go. Hopefully this dosage of chemo through the tap got all the CNS cancer.

I'll let you know the status in the next couple days.

Day Plus 1

So I made it. It was actually a lot more anti-climactic than I thought. I just slept through infusion. Today I'm feeling weak, my stomach hurts from time to time, but I feel relatively good considering everything.

On Monday I get another spinal tap where the docs will inject more chemo to my brain to get rid of the CNS which stands for central nervous system. I think I mentioned in the last post that there's a little leukemia in the brain, which is why I was having those headaches. I'm not saying that I'm going to win 7 Tour Du Frances, but does my story sound like anybody else's???

All in all, I'm feeling good and am thankful for all the support.

Go giants!

Today is the big day

I just finished my first round of radiation and then have one more in the early afternoon. After that, it's the stem cell transfusion. I am so nervous. I want this to go flawlessly. I actually want to be better than I was before. I am not a prayer guy, have never felt religious, but if you're praying for me, thank you!

An update

So since I last posted, there have been a few developments. I'm not if I'd mentioned that I was having headaches, but three days ago I had a CAT scan to see if there were any irregularities in my brain. From the CAT scan the answer was no, unless you thought I was lacking in that department (ha!). But the headaches kept persisting. So I urged my doctor to give me an MRI. First off, let me say that an MRI is a claustrophobic persons nightmare. It took many muscle relaxing pills to get me into that machine. Yesterday, one of the doctors on my team came by to say that they did find an abnormality in the brain and that it's either an infection or CNS which is where the leukemia makes its way into the central nervous system. To determine this I had to do a spinal tap. So last night I had the pineal tap done...it was painful. When the needle gets stuck in the spine, it can snag a nerve and that's what happened a couple of times. So during this procedure, the doc removed 20 cc's of brain fluid and injected 5 cc's of chemo. This morning I was told that it is CNS. Rest assured though. This is very treatable and I'm working with the best team in the country. Just in case you weren't aware, years ago most to all bone marrow transplants never survived. But there was a doctor in Seattle who kept at it and revolutionized this practice. The team of doctors that are working with my fight have all studied under this doctor.

In short, I'm not changing my timeline and look to be better than ever soon enough.

Thank you for all the support. And I will continue to provide updates.

Much love!

Z

Day 1 of radiation is done

So I've gotten through the first day of radiation. Not the most pleasant experience. And it's not because of the radiation but instead because I have to sit still on a bicycle for close to 30 mins.

My main struggle right now are all the headaches. I keep getting them and at night they become more and more intense. Hopefully they'll soon go away. Not sure if it's stress or not, but the staff is monitoring.

On a brighter note, I ran a mile today and did a bit of the insanity work out from memory. While doing this I came up with an idea for all of us. My idea is to achieve my goals but also see if there's a way I can help you achieve yours. So you know my goals from my first post. But of course my main goal is to get healthy and enjoy my life with my wife, family and friends. What I ask is, what are your goals? If you care to share them with me, I will do what I can help you get there.

Chemo's done

Just finished the chemo today and then start radiation on Tuesday. Thankfully I have energy through this and rode 30 mins on the stationary bike. I'm going to have the physical therapists work with me everyday so that I have extra motivation to get back into shape. Pretty wiped now so I'm signing off.

The new norm

Now that I'm back in the hospital and have had about 10 hrs to get acclimated a lot of my feelings from my last hospital stay are coming back. The big feeling is helplessness. And what I mean by that is I'm a control freak. I want to be in control of whatever situation I'm in. I also want to help affect family and friends in a positive way. But when I can't be home to help my wife out, that takes a lot away from me. Or if I can't be there for a friend or someone in my family it drives me nuts. I know, I always seem so even keel. Ha ha.

There hasn't been a time when I couldn't control or at least have the ability to control a situation. This is going to be the new normal for a while.

Back in the hospital

So, I'm back. I just got admitted the presbyterian st lukes (PSL) today. As much as I was a fan of porter hospital, this place has got some great amenities, such as a flat screen tv, a stationary bike, access to a gym and I can eat fruit and vegetables. it's amazing how little things like this make such a big difference. I start chemo in about 2 hrs. I'll let you know tomorrow how I feel.

It's on!

Tomorrow

It's been a while is my last blog, but tomorrow I get my catheter placed and on Saturday I get admitted. After being admitted, I start chemo. Not exactly the type of weekend I'm hoping to have.

This thing is happening. I'll be keeping up with the posts to let you know about my progress.

I'm gonna need your help

As you're all aware, I will be going back to the hospital in the next week. The big challenge is once I get released. It appears that I'm going to need close to 24/7 supervision to make sure that I take all my meds, that I don't fall and hurt myself, to cook my food and to get me to my appts, which will be three times a week. This is a lot to ask for and my wife, in laws and dad are going to help out (primary caregivers). What I'm asking for is if you are planning on being in town for some time in dec or Jan and can take over for a day here or there that will help my caregivers out tremendously. So what I ask is that if you will be in town and can help out, please reach out to me or anyone previously mentioned to let them know when you'll be here in Denver and can help out. I want to relieve my primary caregivers of as much stress as possible. So, if you can help, I really appreciate it. And if you can't, I understand.

Thank you!

Postponed

So it appears that the date of my admittance back into the hospital is being postponed by about 6 days. The rationale is that my doctor and the psychologist I met with during my work believe I have a high anxiety level (whatever would give them that idea) and they want me going in as calm and level headed as possible, which I agree with. This doesn't affect my brothers work up schedule for donating the stem cells and since the transfusion will be delayed a few days, the docs will just freeze SAMs stem cells til we're ready to use them. I'll be honest, I do have quite a bit of anxiety. I could definitely do what is needed even if I were admitted tomorrow, but I want to be in the right frame of mind.

So that is my update. I still have the same goal of being out of the hospital by thanksgiving.

Sunday

So I get admitted into PSL this Sunday and start radiation on Monday. My stress level is definitely rising, quickly. When I was taking a shower yesterday, my hair just fell out, so I bicked my head. Just little things like shaving my head down to the scalp makes this seem very real. And come Monday, it will be real.

So I have a few days of freedom and then things will be changing. Would like to say I'll be the same person on the other side, but I'm not sure. I'm not sure my drs know how I'll be when this all goes down. Everyone's different. No two patents are going to have the same experience.

Well it's been a while since I last gave an update. More to come.

Here's the game plan

So I just got off the phone with my transplant coordinator and I am to be admitted into PSL, where the transplant takes place, on Monday, october 17th and start the chemo w radiation. The bone marrow transfusion is then going to take place on October 24th. Now there might be a day or two difference in dates, but this is what the transplant team has worked up thus far. I will then continue to be a patient for the following 4 weeks after the transplant to make sure my body accepts my brothers cells and get me back to me. But, I had to make a goal or else I'll just sit twiddling my thumbs waiting impatiently. My goal is to be released the day before thanksgiving. That is my favorite holiday and really the only one I look forward to for glutinous reasons. I love turkey. There, I said it. I'm glad I got that off my chest. It's been weighing me down for years...ha ha! Literally. So, November 23 or before WILL be my release date. And we'll worry about anything else at it becomes an obstacle.

This thing is really happening. There are those that have life acted upon them and then those that act on life. I'd rather be the latter. I can't wait to see you all on the other side of this obstacle. It'll be a good day.

Guess who's cancer free?

Me!

I'm out!

I got released today and just got home. What a feeling. I didn't even get my bone marrow biopsy results. The hospital staff knew i'd been there too long and that there was no point waiting for the results in that room. I was on day 26. What a long stay.

I've always been a fan of watching prison shows and prison movies. I'm not so sure I have the same affection for them anymore. I enjoy freedom and fresh air and the ability to do what I want when I want.

On the ride home I realized the world hadn't stopped in my absence. And I'm thankful for that. Enough people put their lives on hold and I can't be more impressed and humbled. I still have a long journey ahead of me, but for now I get my life back. So I'm going to live it out as though every day counts. Because every day does.

Soon enough

Two more nights in here. I really hope I'm not jinxing myself. I am ready to leave and would have no problems packing my bags now and just wait by the front door for the next thirty six. Tom Petty was right when he said the waiting is the hardest part. Although, I think he was referring to something else.

I think the most freeing feeling I'll get from being released is getting my catheter removed. It's like a handcuff on my chest. Unfortunately when I get admitted to the next and final hospital, I'll have another catheter placed, but this one for about four months. I guess I shouldn't think about that just now. Freedom from here for even a short while shouldn't be tainted with thoughts of my next stint. For some reason I keep subtly referring to this as prison and I'm about to be paroled. I hope I get a good PO.

Well, I appreciate all the emails, phone calls and visits. And if I don't respond to you right away, I apologize. It's nothing personal, life just gets in the way sometimes.

Tuesday

So it looks like I'll be getting out of here on Tuesday. My last hurdle is getting a bone marrow biopsy on Monday, and barring no bad news this place wil be in my rearview. It's weird, my counts came up yesterday so I am no longer neutropenic, yet I am so exhausted. I went to sleep at maybe ten last night and with the exception of waking up at six this morning to get blood drawn and vitals recorded, I slept til nine. Even after waking up I was still in a daze for a couple hours.

I am really looking forward to going home and sleeping in my own bed. I'm also excited to cook some food, excercise and really just take care of myself. The things I've missed.

Light the nights

It's not every day that people raise money and time in your honor. For that I'm truly humbled. I moved out to Colorado 5 years ago with a car, some belongings and knew maybe two people. To think I've created a circle of friends as amazing as you all is unthinkable. If I had to do it all over again and move back out here I would. Because for every down moment there were three positive ones to make up for it. And for every one of those moments, one of you was there. I've been constantly saying to myself that I'm going to beat this, but now I believe we're going to beat it together.

I want to thank all of you for going out and either walking or donating money to this great organization. They truly do amazing thing. I'd like to thank my family, my friends, my co-workers and of course my amazing wife. And a tremendous amount of respect and gratitude goes out to Jess Chamness for getting this whole thing started.

Thank you!

It's a new day

So day 1 of me getting my head out of the gutter and already things are taking a turn for the better. My white blood cell count has more than doubled since yesterday and my neutrophils (the baby white blood cells which are much more important for fighting infection) is now at .2. I'll take it! On top of this my rash has started to subside. It was looking really narly yesterday, but today it's not as angry and definitely not as bothersome.

And to top it all off I passed unit 1 of Rosetta stone this morning. Don't start quizzing me please. It's all picture association. Gracias!

Taking a stand

Well it's one in the morning and obviously I can't sleep. My meds keep changing, trying to control this rash which seems to have a life of it's own. This new regiment of meds actually just ended and will start back up at four am. These pharmacists need to learn how to read a clock. Not much good getting meds when you can't get healthy rest to let them do their job. I'm so exhausted but my eyes will not close. This is the first night i haven't taken ambien. Poor move on my part. On top of this I moved rooms today. I was all hyped until I realized how loud it is over here. As much as I don't want to, I might just move back tomorrow. I'm really just getting home sick and need to get well so I can get out of here. My wife comes to visit everyday, does my laundry and takes care of me and then goes home alone. I hate that. I miss our quiet evenings together. Or making our ritual flight to whichever restaurant sounded good for breakfast in the morning.

Cancer has really been a huge inconvenience on my life and those around me. I'm done with this disease. I'm not going to be bullied by something I can't see. So I've made a decision. At 1:17am on thurs, sept 22nd I vow to get healthy as quickly as possible. I want to get back to my life. As bored or angry or sad as I ever was at any particular moment in time prior to cancer, I take those days healthy over this. So I choose that.

Thank you to anyone who donated to the light the nights as well as all of you who are walking. It's nice having a united front.

Yesterdays post

I'm sorry if anyone was alarmed by my post yesterday. I really couldn't control my emotions. Today I feel better. I'm in a better state of mind. I have moved rooms, which has helped tremendously. I needed a change of scenery. I finally get to see trees and people and direct sunlight. Change is good. Hakuna matata.

My previous post

Tomorrow will be better.

Defeated

It is day twenty and I have finally been broken, by this cancer, this hospital room, everything. I had such an upbeat attitude up until now and then today came and kicked the crap out of me. It started off with me taking two benedryl this morning which caused me to pass out for a few hours, with multiple interruptions. I took the benedryl due to my rash which has gone gangbusters. While sleeping I was awoken to have the IV attached for first antibiotics and then an anti fungal medicine. During the second of the two, I was asleep with a 101.6 temp when I woke up and felt wet all over my side. I checked my pants, as a precaution, and then saw my shirt and sweatshirt were soaked. I disrobed my upper body apparel to find that I had pulled the IV in my sleep and it had snapped. This day had gone from bad to shitty. I was now so fucking angry and just wanted everything back to normal. I sent an hour and a half today staring at the clock on the wall. Just watching the seconds go by and hoping this day would end. The IV team came in and fixed the problem and I was halfway hopeful that this day could be salvaged. The nurse came in to draw blood some time after the IV fix and low and behold there was a leak. I'm now on a greased up hill and there is really no chance of me getting traction to get back up to the top. The dermatologist then comes by to take a look at my rash. Like I said, this thing is out of control. It is on my neck, chest, stomach, back, arms, legs, face, you get the picture. She tells me that rashes usually peak around week two and I'm just at the end of week one. FML! She takes a biopsy which is much larger than I had anticipated. Like merchant of Venice. She then tells me that it'll take a few weeks to find the cause and by then this rash should be gone. The only saving grace is that we'll hopefully know the cause prior to me being admitted to presbyterian st lukes for the bone marrow transfusion.

In any event, the IV team comes back and fixes the catheter. Check one for a positive today. I am so fucking pissed and sad and over this fucking thing! Fuck cancer! Fuck rashes! And fuck being stuck in the same room for twenty days!

A Much Better Day

I woke up this morning fully rested having been able to sleep for about eight straight hours. Exactly what I needed. I was still a little emotional from yesterday, but after getting some good counciling from my doctor and my father-in-law I felt much better. Certain things can just make me feel so good. And it's usually the smallest thing. Today it was sitting in a chair that was getting direct sunlight for about five hours. That made a world of difference. It really recharged my system. I am such a sun freak. It's the reason I moved West.

On another note, my beard has begun to fall out. It looks like Keanu Reeves. That is not flattering to me. Additionally I have a rash all over my body from the antibiotics. That really sucks. It's like throwing salt on a wound. It could be a lot worse, but then again it could be a lot better.

The real saving grace in here besides speaking to friends and family as well visiting with them is learning Spanish. I had no idea how much I would enjoy this. I can't speak to any of you in that language yet. And Rosetta Stone uses picture associations so don't ask me "how do you say....?" because I won't know. But it really has given me an additional goal that I am looking forward to achieve.

Cabin Fever

Cabin fever is finally setting in after 17 day. It's funny, the other day I felt like The old inmate "Brooks" from the Shawshank Redemption who didn't know how to survive outside of the jail, and in my case this hospital room. But that was a short lived moment. I'm really losing it in here. I find it hard not to get angry at people for doing the slightest things and for those that make a big issue with, I can't help but keep my teeth clenched and my fists held tight. I'll give you a scenario of the latter. I have a note on my door that states everyone MUST wear a mask when entering this room. The slightest germs can really reap havoc on me. I usually tell people, if you have no symptoms, then feel free to remove the mask. Well one of the docs comes in this morning to check in on me and doesn't wear a mask. But I had informed this doc about my protocol a few days prior. Well, while speaking to me, he begins to cough. I get panicked. I hurry up the convo and he leaves. I should have said something at that moment, but instead told my nurse later that day. These types of mistakes will no longer be tolerated.

But I went on a tangent here. It doesn't matter how many people come to visit or how often, i'm still gonna be In this place. And every doctor, all eight of them, yes I said eight, give me eight different fucking answers as to when I might get out of this place. That doesn't give me much confidence. I am so fucking angry and sad and frustrated and I'm pretty close to the point where someone, and it will probably an innocent person, is gonna get unloaded on with a huge amount of negative emotion.

Hopefully I'll feel better tomorrow.

What A Day

So I woke up this morning after sleeping 9 straight hours. That has not happened since I've been a guest of this fine hospital. I've always had to have my vitals taken at odd hours or blood drawn early in the morning. And the result was that I was in the best state of mind I'd been in since I got here. I practiced Spanish, updated this blog, watched some shows on the iPad, had some great visitors and generally just felt great. I had two fevers, but they were spread apart and not that intense. That was until about six o'clock. That when my body got it's ass kicked. My fever came back for a third time and this time it wasn't playing around. The shivers started and I began to bundle up. I started drinking lots of water to help hydrate myself and try and fight nemesis. Then I got s bloody nose. Great! Let's throw salt on the wound, shall we? Nothing is better than clogging tissue ball after wadded up tissue ball inside a nostril. It feels great. So I'm shaking from my fever and my nose is bleeding and then the headache sets in. Now, I've never had a migrain before, but I would say this was in the ballpark. I had to shut off all the lights and lay completely still. And I couldn't move my eyes. It felt as though every time I turned to grab my water my brain was being kicked. Thankfully this pain began to subside about two hours later.

And to think the next chemo I take is gonna be even stronger. This is gonna be a difficult road. I'm gonna do it, of course, but this is gonna be far from easy. At least I got two weeks under the belt.

Let's see what tomorrow's got in store. It's got to be better than this evening. Ok, headache is creeping back. Over and out.

The First Road To Recovery Has Begun!

My white blood cell counts bottomed out yesterday and today they were slightly up. This is a great sign. I am on my first road to recovery. Unfortunately I have a lot of obstacles ahead of me, such as another round of chemo (which wll be significantly stronger) and radiation (which is making me very nervous). I know I can do this and am very excited about getting through this first hurdle, but it's so difficult to see the finish line.

This is going to be challenging. I knew this going in. Although I didn't have much choice going in. Regardless, I'll see this to the end. Time just gets very frustrating. It's our most valuable commodity and all I want to do is speed it up a bit.

Missinformed

So yesterday I posted a blog saying that my doc didn't think the kind of chemo I'm on would cause hair loss. Unfortunately, that is not the case. She came back today and retracted that statement. And within minutes of her leaving my hair began falling out. It's a bit surreal. I'm basically going to go through puberty all over again. I hope my voice doesn't break:).

Well, I've been getting fevers and intense headaches all day today. That's due to my white blood cells bottoming out at zero. That's a good thing. Now there's nowhere to go but up.

Ok, I'm exhausted, so til next time.

Up & Down

I went to bed last night with a 101 fever and sweated through my pillow when I woke up. Not exactly an attractive picture. Today I've been sleeping most of the day and really don't have an appetite. One funny thing I did learn today though; I was under the impression that the chemotherapy would cause my hair to fall out. One of the docs didn't think this round would do it. That's funny because I gave myself a Mohawk. Mish, I think you just have to wait til the radiation for my Mr. T look to go away.

Well, I got the chills now and have pretty much lost focus for the day.

Thanks for following my blog. It feels good to get my thoughts and feelings out of my head.

Two More Weeks

I spoke to my doc yesterday who said my counts (white blood cells) are down, which is a good thing and I should anticipate being a guest of this hospital for another two weeks. Wow! I got to tell you about my lovely view of the other wing of the hospital from my room. It really makes the day go by:). There's nothing better than seeing some great masonry.

So I started Spanish yesterday and today I get to begin speaking to my insurance company about short term disability and making sure this whole shindig is covered. Not in Spanish of course.

I definitey miss the outdoors. I can't believe how I would take going for a run for granted. I can't wait to get out of here and just smell the outside air. I never thought I'd be in a position where the littlest things like air were items that I would most miss. This is eye opening.

Soon enough.

Here We Are

So I just finished chemotherapy yesterday and am in the neutrophenic stage, which means I practically have no immune system to fight off infection. Funny enough though, I feel relatively good. That obnoxious machine that delivered my chemotherapy and fluids has been removed and things are looking up. I found out from my doc yesterday that my FLP test, which determines whether the cancer is out of control or not, is not out of control. I can't begin to tell you how relieved I was to hear that news. I still got a long road ahead. I'm gonna have to do chemotherapy one more time, with radiation and then get the bone marrow transfusion from my brother. From there, it's all monitoring and making sure his immune system takes over for mine.

But I do want to use this opportunity to thank my brother. Sam, this is THE biggest gift I could ever get from anyone. Thank you!

My Life

I miss my life. I miss my wife. We just got married three months ago and here we are, her in bed alone and me in the hospital. I know I need to just do the work and get through this, but I am so frustrated and angry. I want my life back. I want to go back to being a healthy husband, son, family member, friend and co-worker. I'm setting goals but so impatient. The end seems a million miles away. And I am so scared about when my immune system gives out. It could be tomorrow or next week. There are so many uncertainties.

I guess I'm just saying I wanna be me again. This has really shown how much I love my life and all those that share it with me.

Tomorrows another day. Let's see what happens.

Some days are better than others

I heard some great news yesterday, but still today I feel a bit defeated. This is such a long road. I have my eyes set on the prize, I just need to stay focused. I guess I'm just really scared for tomorrow. That's when my chemotherapy ends and my immune system will begin to really fade. All the great news I got yesterday made me forget about my hurdles ahead of me. I can't wait for this to be over.

I keep hearing this is a marathon not a race. And I know it, I just need to keep that in my forefront.

I'm sure these posts are getting redundant, so I apologize if I repeat myself.

Thank you for keeping up with how I'm doing. This support means everything to me.

Z

Amazing news!

My day started off talking to Caroline who works eith my doctor and administers my bone marrow biopsies. She gave me the run down on what I should expect with this roller coaster ride. After the chemotherapy ends on Friday I stay about 3 more weeks in the hospital as I'll be neutropenic. That means I'll have no immune system. After that I'll be discharged and sent home. But we're not home free yet. I then gotta hope that my brother is a ten out of ten bone marrow donor match. After the transplant (which it turns out to be more of a stem cell procedure - Luke you were right) I will then have chemotherapy again to redestroy my immune system and let my brothers help take hold of mine. That will be another month. One week of chemotherapy and three weeks of recovery. Finally we monitor to see whether my brothers marrow works with mine. That will be over a 4 - 6 month process (a bone marrow biopsy once a month). And there's still a chance I have leukemia when this is through in chronic form.

But now that I've tied you in on what I have to look forward to, I might as well tell you the amazing news. My brother is a PERFECT match. This is the best news I've heard since being admitted on thurs. I am going to get through and end up better than I've ever been before.

Thank you for all the support! I can't begin to show my gratitude for everything you have all done. Cancer picked the wrong man!

I Had A Dream

When I was younger I had this dream that all my friends, from college, high school, work, etc... along with family would all become one circle.  And to be honest that's what I thought my wedding was.  But this is exceeding that dream and I am in awe.  I can't believe what I'm seeing and hearing and most importantly feeling.  The amount of love that I feel is indescribable.  And I just want you all to know that I love you back.  One day something might happen where you need me and I want you all know that I will do everything in my power to be there.  Friendship is being there when a person is at their worst. So thank you.  We're going to beat this together, as a family.

It's amazing how dreams come true.

A Few Days Away

So, come this Friday my Chemo gets detached and that is when the fun begins.  I will become what's known as neutrophenic, which means that my white blood cell count will be unable to sustain my immune system and I will be very susceptible to fever and infection.  But I think I'm going to be exception to this.  MLK had once said that he had a dream and it was such a grand gesture type of dream.  Mine is a bit self serving but includes all of you.  My dream is to get out of here, better than before and share all of my remaining days (which will be A LOT) with all of you.  Be part of your lives and yours mine, because the more and more I write this as well as talk with each of you, we're all in this together.  And I appreciate that.  I would hate to do this alone.   

Hurricane of Love

Last night as people were leaving the hospital and the sun began to set I was beginning to get a bit emotional.  The thought of closing my eyes is still scary, but having my friends, family and this amazing hospital staff gives me confidence that everything will be alright.  But something happened that just turned me upside down and made me realize that things were going to be alright.  Michele and Justin had gone to the hospital kitchen to get some water and I was sitting with Bryan O and I just had a breakdown.  And he said something that is going to stick with me forever.  He said "we're going to beat this with a Hurricane of Love".  And that is exactly what I've been seeing, hearing and feeling.  For all the moments that I've felt sorry for myself, I realized with those three words that I am such a lucky person.  It takes some remarkable circumstances to make people realize what they got.  And also that you don't know what you got til it's gone.  Well, I know what I got and I want to keep it.

So let me use this moment to say thank you.  If you have wrote me, called me, visited me, hugged me, thought of me, etc... THANK YOU!  You have no idea how much that means to me.

Update And A Thank You

So I finished part of my chemo as of yesterday.  Aside from having a bag of drugs drip into my system 24/7, for the first 3 days I've had to have a red chemo drug (which is supposed to respond well to my other chemo meds) pushed through my system.  So, 4 more days of chemo and then the real challenge begins.  That's when I really need to start fighting. 

I've been reading the Lance Armstrong book. It's been really inspirational.  Almost as inspirational as my wife.  She just left for a few hours.  I said it was for me.   But to be honest, I really think I needed it more for her.  She has not left my side in 4 days.  I can't believe I'm putting her through this roller coaster.  I guess the saving grace is that if we can make it through this, we can make it through anything.

I also really want to thank you all.  Everyone out there who is either reading this blog, has called me, texted me, wrote me, thought about me, visited me, drove out to see me, is flying in to see me or even just heard what I' going through.  Also, all the doctors and the nursing staff here at the hospital.  You are the real hero's.  I can't stop saying how humbling an experience this is.  Some people will say that this is all in Gods hands now.  I disagree.  It's in mine.  And it's in yours.  Keep the support going.  I really appreciate it and if I don't respond to you, please know that you are all in my thoughts. 

If I were looking down from above

Have you ever wondered, when you die who would be at your funeral?  Well, I now know and it is incredible.  I can't believe the response I am getting.  Today, my brother and sister-in-law showed up with my two nephews from LA.  They drove in to see me.  My emotions are just running rampant.  It's unbelievable that people have this kind of love for me.  I want you all to know, anytime, anyplace, if any of you ever need my support, I'll be there.  We are all family. 

I've Held This In For Too Long

Being in my predicament or situation or whatever you'd like to call it has a striking resemblance to another family member of mine.  My mom.  Back in 1993 my mom was diagnosed with lung cancer.  When I first heard the diagnosis I didn't know what to think.  I was 16 years old.  How do you process that kind of information?  I remember telling a friend at the golf course before I was about to go out for a loop as a caddy one morning.  It was so surreal.  As the months went on my mom started to deteriorate.  It wasn't like it happened overnight but I saw over time that she wasn't her anymore.  It was terrifying.  She was given 6 months to live and somehow managed 18 because she wanted so badly to see me and my brother graduate high school.  She missed it by 2 months.  2 MONTHS!  I can't even begin to write out a list of all the things I want to see. 

When all this was happening I was completely unable to talk about it.  I might have mentioned it to friends here and there, but I never got out any emotions except through poems, which is why I need to write a blog.  Because I'm afraid of my own vulnerability.  I remember being in the hospital on my birthday while my mom was going through chemotherapy....similar to what I'm going through now.  Can this get any more frightening? I finally met a woman, someone who I decided to marry, whom I love more than I love myself.  I never thought that would have ever been possible.  And she would do anything for me.  And so would her family and my family and my friends and my co-workers.  It is so humbling to see everyone come out in support.  I feel like I'm making a grand appearance and everyone has come out to see it.

Well to get back to my mom, on Easter Sunday in 1995 I woke up late to go to work.  I worked at Ronnie Rexall, a local pharmacy.  I would get in early and put together the Sunday New York Times.  Well my dad stormed into my room irate that I hadn't left the house yet.  I threw on my clothes without haste an darted downstairs to the front door.  But before leaving the house I said goodbye to my mom.  She was awake or so it seemed.  Her head was bobbing from side to side.  I would like to think that she said I love you or goodbye but to be quite honest, I don't remember much of that moment. 

I got to work and started my job.  The day was going along like it had every Sunday before this one.  That was until my dad came walking in the door.  He was flush red in the face and said that he needed to speak with me outside.  I looked over at my boss who nodded and we retreated outside.  My dad then lay the bombshell that my mom had passed away.  She was 49,  I told him I had to go back to work.  I had no idea how to process this information.  He grabbed me by the arm and pulled me to the car.  We drove home silently.  When we got in the house I did something I will never do again.  I walked into the room my mom was in and said goodbye again.  She was not her.  It was just a shell of her.  I still can't believe I did it.  Whenever people ask "have you ever seen a dead person?" I never answer.  Probably because I don't want them to know who it was I saw.

I left the room and sat upstairs with my brother and moms best friend.  She tried reassuring us everything would be okay.  This was all while the coroner came to get her.  You know how I got through that day?  I was sitting on my front porch, in my worst moment and without asking or calling or giving any idea that this event had occurred, two friends drove down my driveway (Bryan Ostendorf and Peter O'Neill).  I can't thank those two enough.  Right then and there I felt saved.  But looking back on it, as much as I needed saving, I think my brother and my dad needed it more.  So beyond making it through for my wife and family and friends and co-workers I'm making it through for my brother and dad.  I wasn't strong enough to be strong for them then, but I can sure as hell be strong enough for them now.  I'm sorry that I distanced myself and couldn't communicate.  But that can't happen anymore.  It won't.  I love you two too much. And as sad and lonely as I feel writing this journal at 12:15AM on a Saturday evening in my hospital bed, I know I got you two...and I feel better.

An Angel on Earth

Michele has not left my side since before me getting admitted into the hospital.  She's slept on the couch for the past two nights and just left to do my laundry (BTW - Peter, this is what it takes in order for your wife to do your laundry).  Every time I want to get something, food, water, a book, you name it, she is there asking if she can help. She is the best wife, friend and partner I could have ever hoped for.  She's my security blanket and I'm blessed to have her.  I hope she never has to go through anything like this, but if that day ever comes, I'll be there every step of the way.  Thinking back, on our 3rd date I told Mish about my condition and instead of her walking out of the bar, she hustled me for three beers playing pool that night.  Women like Mish come along once in a lifetime.  I love you Mishy!

It's All Sinking In Now

The amount of support I’m getting is incredible.  The staff at the hospital are lights out and on top of that I’ve been hearing from friends and family from all over.  Michele hasn’t left my side once.  This is quite the humbling experience.  I’ve even been getting amazing notes from my co-workers, which means the cats out of the bag.  I mean if I’m out of work for a few months, I can’t just say my tummy hurts and expect them to believe that. 

So I’m beginning day 2 of chemo.  There really is no beginning, it’s just that I woke up (or was woken up to get blood drawn) at 5:30 AM.  I really just want to get out of here, but since I can’t, I feel great that the doctors and nurses here are on top of their game.  I’m scared for this Friday.  That’s when the chemo ends and I’ll have no immune system for a few weeks.  I almost want to be the boy in the bubble for those few weeks.  But I know that’s probably not possible. 

Day 1 of the Treatment and reality sets in

5:30 AM

Didn’t sleep much last night.  Tough to doze off with this machine that provides fluids making noise all night.  The little sleep I did get was interrupted by the staff wanting to draw more blood.  Yes!  Not to mention I had a med student draw blood and poke around in my arm for a few minutes before the nurse he was shadowing took over.  I seem to be getting more and more pissed off.  So many questions.  Why? Am I being tested? Did I do truly horrible things when I was younger?  Have I not proven myself yet?  These are the types of questions that whirl around in my head.  And all I want to do is get back to the life I know.  Finding a house with Mish, starting a family and working.  Now all three of those are up in the air.  Times like these the show Quantum Leap sounds great.  Let me jump ahead and just try and fade the memory of this whole nightmare out of my mind.

8:00 AM

Went downstairs to get a catheter put into my chest.  Not the painful pee pee procedure.  This is so all the meds can be administered through one single location.  Cool group of guys that did the procedure.  A guy named G was cool.  Discussed music, skiing, Colorado and everything in between.

10:30 AM

Came back to Leslie Hinds who met me in the hall.  We discussed the prognosis and the success rate if you’re at a 40% blast.  She didn’t give me the up most confidence, but that just makes me that much more driven.  I am going to strangle the shit out this disease!  But if there’s anyone out there that can send me a positive thought, I’ll take it.  BTW, I think Seymour finally let the folks at work in on what’s going on.  I’ve already gotten texts from Jess, Pat and Andy, all asking if I need anything.  Good people.

About to have the chemo start in a few minutes.  It’s going to be running continuously for 7 days.  This is it.  Be strong.  Think positive.  Don’t think you can beat this, know it.

3:00 PM

Chemo was delayed for a few hours.  Apparently there’s a medical shortage in the state or country (not sure).  Makes me feel very reassured.  But the chemo has now started and to tell you the truth, I don’t feel any different, except for this catheter that I have in my jugular vein.  Fucking A!  Can you make it any more uncomfortable?  And I have to wear this for a month?  Right on (sarcasm)! 

So, this is officially day 1 of treatment.  Let the challenge begin.  I’m signing of for the rest of the day.  I’ll let you know how things are tomorrow.

Gotta Set Goals

I’m so scared as to what’s to come.  This is the most challenging obstacle I’ve ever had to overcome.  I know I can do it.  I just never thought I’d be in this position.  Dependent on others and most importantly, dependent on my own immune system to revive itself and make me better.  I know I need to stay positive and stay around positive people.  I am going to make sure that I set and achieve goals during this journey.  So here are some of the goals I am going to try and fulfill:

• Learn Spanish
• Keep a journal of this journey
• Keep in shape (Today I was at 25 push ups – but sit ups and some Insanity moves)
• Eat healthy
• Read (Lance Armstrong’s books, the books I brought with me and whatever info I can find online)
• Keep up with what’s gong on with the Victory Funds
• Be a better friend, husband, son and overall person

These are some lofty goals and I know that they be difficult, especially while undergoing chemotherapy, but there’s no way I’m just going to sit in this bed and feel sorry for myself. 

Breaking the News

What a fucked up day.  I was pissed off as I woke up this morning because Seymour had thrown some M&M’s at me the day before and I was harboring that anger.  I was supposed to be going to PT for my Achilles, but instead I got a call from Drea at Dr. Mikhaella’s office who said that Dr. Mikhaella wanted to see me today.  That was a bit shocking.  The Dr. got on the phone and gave me some alarming news about my blast counts and how my cancer had gone from chronic to acute.  For those who don’t know the difference, chronic can be treated with oral medications while acute requires chemotherapy followed by a bone marrow transplant.  I think that’s what scares me the most.  I really hope that Sam is a perfect match and that his bone marrow works with my body.  I don’t want to be some fucking vegetable or have all these side effects.  Essentially, I don’t want anyone to even realize that I’ve gone through this treatment or even had this disease. 

So, I now know that this is going to be about a 12 month battle before I am completely treated.  So the main goal I have is to be 100% by Sept 1^st, 2012 if not sooner.  Nothing great comes without struggle. 

I can’t sleep.  Michele is asleep on the couch in my Grand Hyatt room at the hospital.  I have a lot of anxiety and just want this to get started right away so I am one step closer to getting my life back.  And I will get my life back. 

Please look out for me whoever is out there….I can use all the help I can get.