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.
Sunday, November 27, 2011
Thursday, November 24, 2011
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
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
Tuesday, November 22, 2011
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.
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.
Monday, November 21, 2011
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.
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.
Saturday, November 19, 2011
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.
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.
Thursday, November 17, 2011
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!
I still got a bit of a road ahead, but that's expected. What a journey!
Wednesday, November 16, 2011
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.
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.
Monday, November 14, 2011
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.
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!
Sunday, November 13, 2011
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.
Wednesday, November 9, 2011
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?
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?
Thursday, November 3, 2011
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.
Tuesday, November 1, 2011
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.
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.
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