So we got some more good news today. In addition to giving me chemo every 2 days in my spine, they are now going to give me full brain radiation treatment for the next 10 days to ensure that the leukemia does not cause any permanent damage to my brain.
I am meeting with the radiologist tomorrow and they are going to fill me in on the pros and cons of brain radiation. This is the first procedure that I am really not crazy about. Brain radiation!!! It sounds so serious. The Internet has told me it is nothing too major though. We shall see.
This will set us back a bit as far as the transplant goes. The plan as it stands right now is, 10 days of brain radiation with spinal chemo every 2 days. Once that is done, I will have consolidation chemo to ensure the rest of my body aside from my central nervous system is kept in remission. Consolidation chemo will last a week. I may be able to do all of this as an outpatient. I will find this out next week (aside from the consolidation treatment). My counts will drop at home and I will need to make a few trips into the Cancer Center for occasional blood and / or platelet transfusions. Once my counts have rebounded and I am feeling fine, I will more than likely head to Boston for the transplant. Best case scenario I would say I will be in Boston by the first of November. This would be good so I can be back home by Christmas. But, If I have learned anything over the past 1 1/2 months, it is not to make plans too far in advance...
Thursday, September 23, 2010
Wednesday, September 22, 2010
Update on Recent Tests
So, I had my bone marrow biopsy, CAT scan, MRI and spinal tap. None of them were that fun to say the least. CAT scan and MRI came back good. I have no tumors growing and my brain looks good. Bone marrow biopsy also shows no leukemia in my bone marrow. This is all good news.
During the spinal tap, they extracted some spinal fluid, about 2 oz and also injected 2 oz of chemo directly into my spine. They ran test on the extracted fluid and have found leukemic cells in my spinal fluid. This means that the leukemia has entered my central nervous system (CNS). This is why I am having double vision and currently need to wear an eye patch.
Treatment for the CNS infiltration will be every two days, they will give me a spinal tap, extract 2 oz of spinal fluid from my spine (which by the way is crystal clear), and inject my spine with 2 oz of chemo fluid. They may also start me on my consolidation chemo while I am in here. This is where chemo is dripped in via IV into my arm. Still waiting on that decision.
Aside from that, pretty quite here at Maine Med. Crystal is home sick today. She has some respiratory infection going on :( Get better soon hun... We are not sure what all this means yet, but I will update the blog as as soon as I find out.
During the spinal tap, they extracted some spinal fluid, about 2 oz and also injected 2 oz of chemo directly into my spine. They ran test on the extracted fluid and have found leukemic cells in my spinal fluid. This means that the leukemia has entered my central nervous system (CNS). This is why I am having double vision and currently need to wear an eye patch.
Treatment for the CNS infiltration will be every two days, they will give me a spinal tap, extract 2 oz of spinal fluid from my spine (which by the way is crystal clear), and inject my spine with 2 oz of chemo fluid. They may also start me on my consolidation chemo while I am in here. This is where chemo is dripped in via IV into my arm. Still waiting on that decision.
Aside from that, pretty quite here at Maine Med. Crystal is home sick today. She has some respiratory infection going on :( Get better soon hun... We are not sure what all this means yet, but I will update the blog as as soon as I find out.
Monday, September 20, 2010
Back in lockup!
I came into hospital this morning for a quick bone marrow biopsy. On the way in, I noticed I had double vision. We told my Dr. that and she immediately ordered a CT scan and a MRI. Tomorrow will be a spinal tap. She thinks we may be looking at a relapse. If that is the case, we will be looking at some more chemo. We knew more chemo was coming, just not this soon. So for now, I am back at Maine Med.
Sunday, September 19, 2010
Been home for a week now!
So I have been home for a week now! It is amazing what a morale booster it is! It has been a busy week to say the least.
On Wednesday, Crystal and I went down to Boston to meet with the transplant specialist at Dana Farber. In the waiting room, there were some people wearing both masks and rubber gloves. I thought to myself "I wonder what is up with those patients?" After waiting for a bit, the receptionist let me know that the doctor would like to get a fresh copy of my labs. This means I need to give blood. I was not prepared for this. You would think after a month in the hospital, I would be fine with giving blood. Definitely not!
They call my name and lead me to a small room in back with maybe 3 of 4 technicians drawing blood from people. They sit me in a chair. I immediately let my technician know that I will need to lay down so I do not pass out and that I am not fond of giving blood. She moves me to a reclining chair. I look over and she has about 10 empty test tubes. I start to have a mild panic attack. Evidently I started getting pale. She puts an ice pack behind my neck. I am now squeezing Crystal's hand pretty hard. Yes, Crystal is in the room with me...
She puts the needle into my arm and begins the blood draw. I swear the needle feels like a turkey baster in my arm. I am heading downhill at this point. Another ice pack behind my head, and one on my forehead at this point. She eventually finishes. I am not able get out of the chair for several minutes due to light headedness.
Back to the waiting room. We are then called in to meet with Dr. Vincent Ho. He is my transplant specialist. He explains why he thinks I should have a bone marrow transplant. Basically, without one, my leukemia will come back. I could have chemo for a year or so, but without the bone marrow, it will come back and results will not be good. He was very nice and extremely informative. He then told us all the negatives of a bone marrow transplant. That was a sobering conversation. But weighed against a relapse, it is obviously the way to go. Remember those people I mentioned that had masks and gloves on, that will be me after the transplant. For a long time after the transplant. Basically, I will have no immune system for several months. Crystal and I asked how long it will take to get the ball rolling. He said once we get your search going, it will be like 2 to 3 months. We said great, lets get the search going.
The next day, while sitting at my desk trying to sort through insurance paperwork, I get a call from Dr. Ho. He says I have good news. It looks like we have close to 1,200 matches for you. It looks like the 2 to 3 months will be reduced down to 3 to 4 weeks. This is good news.
On Friday, I had an appointment with my doctor at the Maine Cancer Center. She checked me out and it appears I am doing OK. (had to give blood again. Almost same blood story as above.) It looks like I will be going in for another round of consolidation chemo soon. That is a 1 week hospital stay. Will find out next week about that. Monday, I have to have another bone marrow biopsy to ensure I am still in remission. This is where they drill into my hip bone to extract marrow. They are putting me under anesthesia this time because they have been unable to get a good sample each time they have done it in the past. This is due to my existing marrow being extremely "dry" due to the leukemia.
On Wednesday, Crystal and I went down to Boston to meet with the transplant specialist at Dana Farber. In the waiting room, there were some people wearing both masks and rubber gloves. I thought to myself "I wonder what is up with those patients?" After waiting for a bit, the receptionist let me know that the doctor would like to get a fresh copy of my labs. This means I need to give blood. I was not prepared for this. You would think after a month in the hospital, I would be fine with giving blood. Definitely not!
They call my name and lead me to a small room in back with maybe 3 of 4 technicians drawing blood from people. They sit me in a chair. I immediately let my technician know that I will need to lay down so I do not pass out and that I am not fond of giving blood. She moves me to a reclining chair. I look over and she has about 10 empty test tubes. I start to have a mild panic attack. Evidently I started getting pale. She puts an ice pack behind my neck. I am now squeezing Crystal's hand pretty hard. Yes, Crystal is in the room with me...
She puts the needle into my arm and begins the blood draw. I swear the needle feels like a turkey baster in my arm. I am heading downhill at this point. Another ice pack behind my head, and one on my forehead at this point. She eventually finishes. I am not able get out of the chair for several minutes due to light headedness.
Back to the waiting room. We are then called in to meet with Dr. Vincent Ho. He is my transplant specialist. He explains why he thinks I should have a bone marrow transplant. Basically, without one, my leukemia will come back. I could have chemo for a year or so, but without the bone marrow, it will come back and results will not be good. He was very nice and extremely informative. He then told us all the negatives of a bone marrow transplant. That was a sobering conversation. But weighed against a relapse, it is obviously the way to go. Remember those people I mentioned that had masks and gloves on, that will be me after the transplant. For a long time after the transplant. Basically, I will have no immune system for several months. Crystal and I asked how long it will take to get the ball rolling. He said once we get your search going, it will be like 2 to 3 months. We said great, lets get the search going.
The next day, while sitting at my desk trying to sort through insurance paperwork, I get a call from Dr. Ho. He says I have good news. It looks like we have close to 1,200 matches for you. It looks like the 2 to 3 months will be reduced down to 3 to 4 weeks. This is good news.
On Friday, I had an appointment with my doctor at the Maine Cancer Center. She checked me out and it appears I am doing OK. (had to give blood again. Almost same blood story as above.) It looks like I will be going in for another round of consolidation chemo soon. That is a 1 week hospital stay. Will find out next week about that. Monday, I have to have another bone marrow biopsy to ensure I am still in remission. This is where they drill into my hip bone to extract marrow. They are putting me under anesthesia this time because they have been unable to get a good sample each time they have done it in the past. This is due to my existing marrow being extremely "dry" due to the leukemia.
So, things are moving along. I am feeling good and appreciate all the prayers and support that continues to come our way. Couple pics. One of Paige with her fancy soccer outfit on with her fancy hairdew that she did - the comb over and the other is me with my new hair style.
Sunday, September 12, 2010
Going Home !!!!
The nurse came in this morning and said, "I have some good news." My counts had risen to .53. Crystal had slept at the hospital with me last night. We were psyched. You see, Thursday we were at .22, Friday we dropped to .19 and Saturday it also stayed at .19. We were bummed to say the least! Then this morning to have .53, we just couldn't believe it.
When we got home, we were greeted with balloons and this sign that Rhonda put up:
When we got home, we were greeted with balloons and this sign that Rhonda put up:
So I am now sitting on my own couch watching the Pats waiting for the kids to get home. I still need to wear my mask because I still do not have much of an immune system. It is nice to be home after 5 weeks in the hospital on soooo many levels!!
Thank you to everyone for the cards, phone calls, gifts, meals, child watching, visits, lawn mowing, massages, gift cards, trash runs, positive thoughts and wishes.
Friday, September 10, 2010
Counts and how to get a Bone Marrow Test
Counts went in the wrong direction today. Went from .22 to .19. Doctor said it was probably due to the increase in antibiotics they have been giving me. I thought they had been hanging an extra bag or two of stuff on my IV pole. She said she was going to back off and see if that helps. Good call doc!
Also, since finding out my sister is not a match, Crystal and I have gotten several questions about how to get a bone marrow test. If you are interested in being tested, please visit the following website. www.dkmsamericas.org. It is a site where you can learn about the bone marrow testing and donating process. You can also sign up to have a test kit sent to your house.
The doctor did say that as soon as my counts hit .50, I would be released. Typically, once you hit .50, they remove you from all antibiotics and then monitor you for another 24 hours to make sure you do not break a fever. My doc has said as soon as I hit .50, I am out the door. :) Paperwork is all done.
Also, since finding out my sister is not a match, Crystal and I have gotten several questions about how to get a bone marrow test. If you are interested in being tested, please visit the following website. www.dkmsamericas.org. It is a site where you can learn about the bone marrow testing and donating process. You can also sign up to have a test kit sent to your house.
The doctor did say that as soon as my counts hit .50, I would be released. Typically, once you hit .50, they remove you from all antibiotics and then monitor you for another 24 hours to make sure you do not break a fever. My doc has said as soon as I hit .50, I am out the door. :) Paperwork is all done.
Thursday, September 9, 2010
Good and not so good news.
My neutrophils are up again. Up to .22 today. We need to be at .50 to go home. I am shooting for .40 tomorrow. We shall see!
Doctor stopped by today. She let me know my sister is not a match for my bone marrow transplant. I do not know who was more disappointed, me or my sister.
Doctor then went on to say that I have a fairly common HLA type so it should not be difficult to find a match from the national bone marrow bank. I will pass on more info as I get it.
My nurse I have today lives in Buxton about 1/4 of a mile from where I grew up. Right on Memory Lane. Another nurse I have is Adam Black's fiancé. Small world..
Other than that, no big news from Maine Med. Time to figure out what to choose for dinner tonight from the expansive Maine Med room service menu :)
Doctor stopped by today. She let me know my sister is not a match for my bone marrow transplant. I do not know who was more disappointed, me or my sister.
Doctor then went on to say that I have a fairly common HLA type so it should not be difficult to find a match from the national bone marrow bank. I will pass on more info as I get it.
My nurse I have today lives in Buxton about 1/4 of a mile from where I grew up. Right on Memory Lane. Another nurse I have is Adam Black's fiancé. Small world..
Other than that, no big news from Maine Med. Time to figure out what to choose for dinner tonight from the expansive Maine Med room service menu :)
Wednesday, September 8, 2010
Numbers up, Hair Loss and Room Tour
My numbers are up again today. The number we are really zeroing in on are the Neutraphils. They need to be up to .50 before I can be released. History over the last few days:
Sunday - .00
Monday - .03
Tuesday - .04
Wednesday - .09
I am hoping for .20 tomorrow. It is a stretch, but why not shoot for a high number!
Also, wanted to give everyone an update on the hair situation. It is still falling out, but the loss has slowed. Not sure if I will go completely bald or not. Here is a pic I took this morning.
I am realizing that the moles I have felt under my hair for the last several years are much larger than they felt. Just as any type of of skin growth is, they are very attractive hanging off my head.
I have also included a couple pictures of my room. It is much smaller than it appears in the pictures. The first is the table I spend most of my time at. The second is the the bathroom door where we track all my blood counts.
I am still feeling fine. Energy level gets low throughout the day. They say that comes with territory.
Crystal and I had a family trip to Disney planned for this November. Looking at my schedule for the next few months, we made the decision that I would not be able to go. I told Crystal she should still bring the kids and a friend or family member. Crystal discussed it with Nolan that night and left it up to him. She asked him if he still wanted to go but Dad would not be able to go. He said, "No. We should wait until he is feeling better." Big decision for a 7 year old. So, we were able to get a (almost) full refund on the trip. This is a good thing!
Sunday - .00
Monday - .03
Tuesday - .04
Wednesday - .09
I am hoping for .20 tomorrow. It is a stretch, but why not shoot for a high number!
Also, wanted to give everyone an update on the hair situation. It is still falling out, but the loss has slowed. Not sure if I will go completely bald or not. Here is a pic I took this morning.
I have also included a couple pictures of my room. It is much smaller than it appears in the pictures. The first is the table I spend most of my time at. The second is the the bathroom door where we track all my blood counts.
I am still feeling fine. Energy level gets low throughout the day. They say that comes with territory.
Crystal and I had a family trip to Disney planned for this November. Looking at my schedule for the next few months, we made the decision that I would not be able to go. I told Crystal she should still bring the kids and a friend or family member. Crystal discussed it with Nolan that night and left it up to him. She asked him if he still wanted to go but Dad would not be able to go. He said, "No. We should wait until he is feeling better." Big decision for a 7 year old. So, we were able to get a (almost) full refund on the trip. This is a good thing!
Monday, September 6, 2010
Labor Day 2010
So Crystal "slept over" last night. Thanks hun for putting up with me. Also thanks for putting up with the nurses coming in at 11PM, 3AM and 6AM to check my vitals, take my blood and give my antibiotics. It also helps ensure it is impossible to ever get more than 3 - 4 hours of sleep.
So today was another big day day. I got to go outside!! Below is a picture as proof. It is just about the goofiest picture of me I have ever seen, but hey, I was outside for the first time in a month.
Amy, the nurse I had today (one of our favorites) came in and asked, "Have you gotten to go outside since you have been here?" I said "No, I went to Radiology the other day though." She laughed. She said she would get me a wheelchair and Crystal could bring me outside as long as I wore my mask. I was actually going outside. First I went to Radiology, and today I was going outside! Crystal and I were so excited.
Crystal took control of the situation, "It is sunny out so get your hat. You don't want to get a sunburn on your head. You can wear my sunglasses. Don't forget your mask." The nurse showed up with the wheel chair. Off we go!!!
The first place she wheeled me to was the little sitting area in the horseshoe of Maine Med. It was awesome. We sat out there for about 15 minutes. The only bad part were the pigeons. I am a complete germaphobe now. I thought they were going to come land on us or shit on us or something. I am not sure what I was thinking. Just not crazy about pigeons right now. I kept having Crystal throw rocks at them to keep them away. She whacked a few of them pretty good.
Next she wheeled me over to the new patio area in the new wing of the hospital. That is where the picture was taken. We stayed out there for 10 minutes or so. I kept sneaking the mask down so I could actually breath the fresh air. It was nice.
For lunch, the Brown's came in and brought Amatos. Actual food. No hospital food. It was awesome. In the afternoon, my Aunt came in. The other day, I had made a post on my Facebook page of a quote my sister passed onto me. My Aunt printed off the quote and framed it. I busted out crying when she gave it to me. Chemo must have effected my tear ducts....
More good news. My counts were up again today. This is the 3rd day in a row they have gone up. I actually have Neutraphils now. They are a measure of how effective your immune system is. They are only at .03, but I have some. There need to get to .5 before I can be released, but Amy the nurse said that once these start rising, they typically come up fairly quick. We shall see.
All and all, a great Labor Day. Can't say off the top of my head what I did last year for Labor Day, but I am sure I will be able to tell you next year what I did on Labor Day 2010.
Sunday, September 5, 2010
Day 28 in the Hospital
Well, today is day 28 in the hospital. Getting pretty boring. I am feeling fine though. Counts came up again today!!
Crystal came in and spent most of the day with me yesterday while the Dixon's watched the kids. Mom and Dad also came in. Crystal is sleeping over tonight. It is our "Date Night". Which by the way is a pretty funny movie. Just rented it on my fancy new iPad. A bunch of people chipped in at work and bought me an iPad and got Crystal a gift certificate to a spa. I love the iPad. I also rented Death at a Funeral on the iPad which was also very funny.
The other night I spiked a fever and the doctor got concerned. Since I have no immune system, this is a big deal to them. So Friday, I had a chest x ray to make sure there was not any pneumonia in my chest. They came right to my room with the x ray machine. No trace of pneumonia showed up.
For another test, the doctor also ordered a CT scan. This means I actually had to leave the 5th floor and go to the Radiology Department. This would be my first time off the floor in close to four weeks. Field trip!!! So this guy shows up to pick me up with a wheelchair. I get my mask on (have to wear a mask whenever I leave my pressurized room) and off we go. As he is pushing me down the hall, suddenly we take a hard left turn and almost hit the wall. Apparently the left brake had locked up on wheel chair.
He messes with it and fixes it and off we go again. Onto the elevator. Yippee. Off the 5th floor. The elevator shuts and it is just my wheelchair pusher and me. No conversation. Then he starts coughing. Uncontrollably. I am thinking, "Hey, I have no immune system here buddy!" The doors open and he stops coughing and starts pushing again. We make it about 200 feet and hard left turn again. Brake locked up again. He is now mumbling under his breath.
He parks my wheelchair in an empty area in radiology. He says someone will be right with you and he leaves. So I am sitting there in my wheelchair for maybe 10 minutes. A nice lady comes out and says "Are you all ready?" I say "Sure." She wheels me into the CT room. Lays me on the table and slides me in and leaves the room. She says you will hear breathing instructions and it may feel like your butt is getting hot. What?? What does that mean????
So I hear a pre-recorded voice saying "Breath in.... Hold you breath." This happens several times. With my mask on, I am now starting to hyperventilate. She now speaks over the intercom, your butt will start to feel hot soon. More hyperventilating. What does that mean? My butt will be hot?? Then I feel it. It was just weird is how I am going to leave it. The prcedure is now done.
They wheel me back out to the holding area and I wait for a wheel chair pusher. After 15 mintues, the same guy shows up and pushes me back. 1 one brake lockup on the way back to the room and and no coughing in the elevator.
So that was my big excitement yesterday. :)
Crystal came in and spent most of the day with me yesterday while the Dixon's watched the kids. Mom and Dad also came in. Crystal is sleeping over tonight. It is our "Date Night". Which by the way is a pretty funny movie. Just rented it on my fancy new iPad. A bunch of people chipped in at work and bought me an iPad and got Crystal a gift certificate to a spa. I love the iPad. I also rented Death at a Funeral on the iPad which was also very funny.
The other night I spiked a fever and the doctor got concerned. Since I have no immune system, this is a big deal to them. So Friday, I had a chest x ray to make sure there was not any pneumonia in my chest. They came right to my room with the x ray machine. No trace of pneumonia showed up.
For another test, the doctor also ordered a CT scan. This means I actually had to leave the 5th floor and go to the Radiology Department. This would be my first time off the floor in close to four weeks. Field trip!!! So this guy shows up to pick me up with a wheelchair. I get my mask on (have to wear a mask whenever I leave my pressurized room) and off we go. As he is pushing me down the hall, suddenly we take a hard left turn and almost hit the wall. Apparently the left brake had locked up on wheel chair.
He messes with it and fixes it and off we go again. Onto the elevator. Yippee. Off the 5th floor. The elevator shuts and it is just my wheelchair pusher and me. No conversation. Then he starts coughing. Uncontrollably. I am thinking, "Hey, I have no immune system here buddy!" The doors open and he stops coughing and starts pushing again. We make it about 200 feet and hard left turn again. Brake locked up again. He is now mumbling under his breath.
He parks my wheelchair in an empty area in radiology. He says someone will be right with you and he leaves. So I am sitting there in my wheelchair for maybe 10 minutes. A nice lady comes out and says "Are you all ready?" I say "Sure." She wheels me into the CT room. Lays me on the table and slides me in and leaves the room. She says you will hear breathing instructions and it may feel like your butt is getting hot. What?? What does that mean????
So I hear a pre-recorded voice saying "Breath in.... Hold you breath." This happens several times. With my mask on, I am now starting to hyperventilate. She now speaks over the intercom, your butt will start to feel hot soon. More hyperventilating. What does that mean? My butt will be hot?? Then I feel it. It was just weird is how I am going to leave it. The prcedure is now done.
They wheel me back out to the holding area and I wait for a wheel chair pusher. After 15 mintues, the same guy shows up and pushes me back. 1 one brake lockup on the way back to the room and and no coughing in the elevator.
So that was my big excitement yesterday. :)
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