I just posed about my AML post treatment (Catching Up: AML). Since I had not posted since September, I have some catching up to do. I'll step back a bit and start when I left the hospital.
After I was released from the hospital July 2nd. I was on the golf course with the Wicks' July 4th. (I wrote about that before) The following weekend we were in the Hills for our Grann reunion. It was great to see everyone and for the extended family to see how well I was doing.
I flew from Rapid City to Kansas City that sunday for our IDEA conference. It's one of my biggest shows of the year and though it is work, it's with a great bunch of people and tends to be a lot of fun. Though Andy hates hearing about my trips if there is any "fun" involved.
After Kansas City, the next weekend we loaded up the kids and headed down to Omaha to the zoo. It was a great weekend (HOT). We had only planned on going on Saturday, but on our out of town Sunday morning, we decided to spend a few more hours there seeing the things we missed.
Then schools starts. Alivia and Nevaeh are in school. Nevaeh was much more excited about it then Alivia.
Over Labor Day, we had our Mexico vacation. It has been on my to do list for quite some time to post about that. I'll do so shortly, but there is so much to tell. It was a great time and a necessary escape. Unfortunately we got word that Grandpa Dick had passed while on vacation. My parents, who were with us, had to hurry home. Andy and I finished the vacation as planned, but had flight problems on the way home. In the end, we had to fly into Omaha and rent a car, drive all night so that we would make it back for the funeral. Visits to the farm are a lot different without him.
Life returned to "normal" after our trip. The kids were in school. I started traveling quite a bit for work. Except for trips to the doctor for checkups, things were pretty much back to pre AML days. All is good.
The weather this fall has been unusually dry. No snow at all. A brown Christmas. Christmas was so different this year since we did not go to the farm. But we had friends, family and a pretty awesome prime rib. So all was good.
On Dec 26th, my niece, Ava was born. So the year, full of ups and downs seems to be ending on a high note. It is amazing how all the hospital stays seem so long ago... On to the new year.
Saturday, December 31, 2011
Catching up: AML
I have done a poor job keeping up my blog since my treatments ended. I am finiding that there are fellow AMLers out there reading this. So I can promise you I will do a better job keeping this up in the new year. There is much to tell, but I'll give you the abbreviated version.
First I'll bring you up to speed on my AML.
My last treatment ended July 2nd. My 3 month and 6 month checkup showed that my counts were good and that I was still in remission. They were only doing blood tests and watching my counts, but I'm told they should be able to tell if my cancer comes back through monitoring my blood work.
At my 3 month visit, my bloodwork showed that one of my antibodies were low (borderline). This is to be expected with all the chemo. My immune system needs, and will continue to need a bit of a boost. To address this, I was started on monthly IVIG treatments. I think I will wrote a separate blog post about the actual IVIG treatment, but it is a blood product like platelets and hemoglobin. I did 2 of those treatments. At my 6 month checkup, my blood work showed that I no longer need additional IVIG treatments.
On thanksgiving I woke with what I thought was a rash on my side. It got significantly worse and painful throughout the day. Turns out I had a shingles. It was a first for me. I had never seen them or seen anyone with them before. Shingles is a reactivation of the chickenpox virus which lies dormant in our nerve endings. It can happen to about anyone and is more common in people that have suppressed immune systems. My breakout was fairly small, on my side and thigh, but very painful. It is very important that you see your doctor and begin treatment as soon as possible if you have shingles. If left to run its course, the pain can linger even after the sores are gone. For me, most of the pain and sores are gone (4 weeks later).
At my 6 month checkup, the doctor suggested we do a bone marrow biopsy. Since I had met my out of pocket and deductible for the year, it seemed to make sense. A bone marrow biopsy consists of the doctors sticking a needle into the hip bone to extract bone marrow. I had three prior to this one. Even though they are painful, the experience is generally not too bad. This time, however, the doctor struggled to get any bone marrow. They sent me to radiology where they could use one of the imaging machines to see what they were doing. The good news is that they gave me anesthesia at that point. I would highly recommend this approach to anyone getting bone marrow biopsy. Now that I’ve had it done this way once… I should be able to use that as an excuse for any future biopsies.
I will put my bone marrow results in a future post. For now, I have been feeling well. Energy has been good. Work has been good. The holidays with family have been great. It does seem, however, that the new year will have some new adventures in store for me.
First I'll bring you up to speed on my AML.
My last treatment ended July 2nd. My 3 month and 6 month checkup showed that my counts were good and that I was still in remission. They were only doing blood tests and watching my counts, but I'm told they should be able to tell if my cancer comes back through monitoring my blood work.
At my 3 month visit, my bloodwork showed that one of my antibodies were low (borderline). This is to be expected with all the chemo. My immune system needs, and will continue to need a bit of a boost. To address this, I was started on monthly IVIG treatments. I think I will wrote a separate blog post about the actual IVIG treatment, but it is a blood product like platelets and hemoglobin. I did 2 of those treatments. At my 6 month checkup, my blood work showed that I no longer need additional IVIG treatments.
On thanksgiving I woke with what I thought was a rash on my side. It got significantly worse and painful throughout the day. Turns out I had a shingles. It was a first for me. I had never seen them or seen anyone with them before. Shingles is a reactivation of the chickenpox virus which lies dormant in our nerve endings. It can happen to about anyone and is more common in people that have suppressed immune systems. My breakout was fairly small, on my side and thigh, but very painful. It is very important that you see your doctor and begin treatment as soon as possible if you have shingles. If left to run its course, the pain can linger even after the sores are gone. For me, most of the pain and sores are gone (4 weeks later).
At my 6 month checkup, the doctor suggested we do a bone marrow biopsy. Since I had met my out of pocket and deductible for the year, it seemed to make sense. A bone marrow biopsy consists of the doctors sticking a needle into the hip bone to extract bone marrow. I had three prior to this one. Even though they are painful, the experience is generally not too bad. This time, however, the doctor struggled to get any bone marrow. They sent me to radiology where they could use one of the imaging machines to see what they were doing. The good news is that they gave me anesthesia at that point. I would highly recommend this approach to anyone getting bone marrow biopsy. Now that I’ve had it done this way once… I should be able to use that as an excuse for any future biopsies.
I will put my bone marrow results in a future post. For now, I have been feeling well. Energy has been good. Work has been good. The holidays with family have been great. It does seem, however, that the new year will have some new adventures in store for me.
Thursday, September 1, 2011
Off to Mexico
| Ok, so I have been doing a really poor job about writing. The good news is that since i have been out of the hospital, things have been going pretty well. With the exception of a few eye infections, I have not been sick. Work has been super busy and I have been traveling a fair amount. All good news so far. I think everyone again for the prayers... so far so good. My next checkup is the end of September. Nevaeh (5) has started school... she's so excited to go every day. Liv (7), no so much. Jonah(9 mo) will be walking soon. Layla (2) pretty much runs the house. | |
Off to Mexico Now on to the fun stuff... First... turn on your sound and hit play on the video to the right. It's been almost exactly a year since I got sick. (Labor Day 2010) On Saturday... we're off to Mexico. We've been planning this since March to celebrate the end of my treatments. Saturday at 7:45 am we leave Sioux Falls... just over 6 hours later, we'll be in Cancun. (if everything is on time). Check out the tab above for more info... If you want to see what we are up to, you can check my photo\video site during the trip: http://unacervezaporfavor.shutterfly.com/ I hope to post things as we go. For now, It's just a few pics of the resort. Andy & I, my Mom & Dad and 3 friends from work are going. Mom & Dad are quite nervous. It should be quote an experience for all of us. We are staying at Secrets Maroma Beach resort south of Cancun. It's an all-inclusive place. We've charted a boat for fishing and an excursion to Chichen Itza. Andy & I have basically been packed for over a week. While we are gone, Andrea's grandparents (Lovern and Wayne) are watching the kids. For those in my family reading this, Lovern reminds me so much of Grandma Carol. The kids are good hands. Lovern and Wayne have been a huge help to us this last year. | |
Friday, July 8, 2011
Life after AML- Week 1, Family Time
So you should all know from my last post, that I completed my last round of treatment Saturday, July 2nd. It has been a busy week.
It started with the Board family reunion the following Sunday in Carpenter. Nice crowd. Good food. Though it seems that each year more and more people are leaving right after lunch. It was a hot day... Andy and I played a little kickball with the kids. Fireworks that night. Liv and Veah, would pick them out and I would light them. Managed to get through the night only starting one child on fire... all around a success.
Monday the fourth of July started with 13 of us doing nine holes of golf in Clark. This has become a tradition that I look forward to every year. Definately was not going to miss it, even if I had been in the hospital less then 48 hours earlier. This year it was Royal, Gordon, Ray, Kirby, Scott, Wade, Brenda, Mike, Barry, Barret, Terry, Dylan, and myself. It ended up being one of my best rounds of golf and though I was a little aprehensive about whether or not I would be able to walk that much, I had no problems. Everyone congregated back at the farm for lunch. The kids played in the water all afternoon.
I was back to work on Tuesday... really starting to get busy. Went to a few softball games to watch the daughter of our new friends Brad and Cindy play ball.
Now we are off to the Grann family reunion in the Black Hills. We are staying at Placerville church camp again. Sunday I leave from rapid city for Kansas city. I have a big convention next week. Andy and the kids are staying with her mom most of the week to enjoy the hills a little more.
In other news... I am writing this on my new Samsung Galaxy Tab .... it is so much better then Jessica's iPad. I love new technology... especially when work pays for it..
Saturday, July 2, 2011
AML: Goodbye Sanford Hospital... May we never meet again
I am happy to say that I am being released today. The Neupogen shots did the trick. I went from an ANC of 20 to 1020 in just two days. White count jumped from .5 to 2.4.
There has been a fair amount of discomfort from the shots. The bone pain is to be expected. Yesterday it was mainly in my legs and shoulders. Today it is mainly in my back and hips. The discomfort is manageable with Tylonol. But it is giving me flashbacks to the pain that started us on this path last September. Though this discomfort is no where as intense as that night in September.
i am eager to get home today because of the holiday weekend. Board reunion (My Grandma's family) is tomorrow. This had always been my favorite reunion growing up. We'd eat, visit and then the softball marathon would begin. We would usually play until it was too dark to see the ball. Monday is our traditional 4th of July gathering. Some of the group normally goes golfing in Clark, so I am hoping to join them. Might not be the wisest thing to do, but its time to start getting back to normal. My body needs to realize its time to get back in shape.
So this chapter is done. 9 months/6 rounds of chemo. I don't have a follow up appointment for 3 months. I imagine they will all miss me here. The care at Sanford has been great and I am fortuate that my treatment could happen so close to home. Even the view from my room has been much better this time. Everything is green.
Looking forward to seeing you all soon.
Thursday, June 30, 2011
AML: Round 6 - Day 23, Neupogen
So yesterday we saw a slight "flicker" in my ANC counts. If you recall, ANC is my ability to fight infections and is once of the earlier indicators that I am starting to recover. Yesterday I went from and ANC of 0, to an ANC of 8 today. I need to be at least 500 before the think about letting me go home.
Yesterday my platelets were low (12,000) as was my hemoglobin (8.7). Since I was potentially looking at needing both platelets and red blood in the same day, I asked if we could do one of them a day early. When I get blood products, I have to be attached to blood pressure monitors. Red blood takes about 6 hours. Platelets about 3. It's a long day if I have to get both.
So I got 2 units of red blood yesterday. Today, my platelets actually increased on their own from 12,000 to 17,000. This is a very good sign as platelets tend to recover the fastest. SO today all my blood counts increased slightly.
Still, I'm looking at maybe 4-5 more days in here. The doctors know of my desire to be out of here before the 4th. So they have elected to give me a Neupogen shot. This shot will stimulate my bone marrow stem cells to grow faster. I am told it will make a big difference in how fast my white counts recover. It should cut a few days off this trip.
So I got my shot this afternoon, they give it under the skin on my belly. Not a big deal at all. They said I may experience some bone pain as it starts working. We'll see. Hopefully I'll see some movement as soon as tomorrow.
Thanks for all your prayers. They are working. If you don't mind, I'd ask you to direct your prayers to a fellow AML patient. He's just a little guy, 2 years old, his name is Davis. I met him a few months ago on his first round of chemo. He mother used to work at Daktronics with me. He has since had a bone marrow transplant. Unfortunately, Davis is already relapsing. He has had a much tougher road then I. His little body has struggled to handle the treatment. The family needs a miracle, so please add them (JoAnn & Jeff, and brothers Jasper & Andy) to your prayers.
Yesterday my platelets were low (12,000) as was my hemoglobin (8.7). Since I was potentially looking at needing both platelets and red blood in the same day, I asked if we could do one of them a day early. When I get blood products, I have to be attached to blood pressure monitors. Red blood takes about 6 hours. Platelets about 3. It's a long day if I have to get both.
So I got 2 units of red blood yesterday. Today, my platelets actually increased on their own from 12,000 to 17,000. This is a very good sign as platelets tend to recover the fastest. SO today all my blood counts increased slightly.
Still, I'm looking at maybe 4-5 more days in here. The doctors know of my desire to be out of here before the 4th. So they have elected to give me a Neupogen shot. This shot will stimulate my bone marrow stem cells to grow faster. I am told it will make a big difference in how fast my white counts recover. It should cut a few days off this trip.
So I got my shot this afternoon, they give it under the skin on my belly. Not a big deal at all. They said I may experience some bone pain as it starts working. We'll see. Hopefully I'll see some movement as soon as tomorrow.
Thanks for all your prayers. They are working. If you don't mind, I'd ask you to direct your prayers to a fellow AML patient. He's just a little guy, 2 years old, his name is Davis. I met him a few months ago on his first round of chemo. He mother used to work at Daktronics with me. He has since had a bone marrow transplant. Unfortunately, Davis is already relapsing. He has had a much tougher road then I. His little body has struggled to handle the treatment. The family needs a miracle, so please add them (JoAnn & Jeff, and brothers Jasper & Andy) to your prayers.
Thursday, June 23, 2011
AML: Round 6 - Day 16
I am done with week 2 of my final round of chemo.
My blood counts bottomed on day 14. This is very consistant with all 4 rounds of my consolidation chemo. I received platelets on Tuesday (day 14) and hemoglobin today (day 16).
I have felt fine the whole time. Cough has gone away. So now we are just waiting. I hope to be out of here in just over a week, before the 4th of July.
I've been getting strong antibiotics most of the time. Levaquin and Vancomycin. So I have hope hope I won't get sick this time. The doctor started antibiotics a lot earlier this time quite earlier then other times.
Overall this time is going fine. I am working remotely so my days pass quickly. Andrea is able to come visit fairly often. Still, I am itching to be done and move on. Everything up until now has just been focused on getting to the next treatment. Now we actually get to move on.
As always, thanks for the good vibes and prayers... it's all working.
My blood counts bottomed on day 14. This is very consistant with all 4 rounds of my consolidation chemo. I received platelets on Tuesday (day 14) and hemoglobin today (day 16).
I have felt fine the whole time. Cough has gone away. So now we are just waiting. I hope to be out of here in just over a week, before the 4th of July.
I've been getting strong antibiotics most of the time. Levaquin and Vancomycin. So I have hope hope I won't get sick this time. The doctor started antibiotics a lot earlier this time quite earlier then other times.
Overall this time is going fine. I am working remotely so my days pass quickly. Andrea is able to come visit fairly often. Still, I am itching to be done and move on. Everything up until now has just been focused on getting to the next treatment. Now we actually get to move on.
As always, thanks for the good vibes and prayers... it's all working.
Sunday, June 12, 2011
AML: Chemo - Round 6
Wed 6/8 I started my 6th round of chemo for my AML. Same type of chemo (high dose cyterabene). So far so good. I came in with a bit of a cold, virus or something like that. Along with it is a nasty cough and some sinus issues. They have me on steroids and antibiotics to get that under control. Day 5 & it seems to be helping a bit... Cough is sticking around.
I suppose it's the steroids doing it, but my numbers (white cells and ANC) have actually been climbing since I got here. Hemoglobin and platelets are holding steady. The last time we started treatment and my numbers climbed like this, it was my shortest trip. Here's hoping...
This should be my final round of chemo. Then we wait and see if I relapse. The good news is I feel well. The bad news, since this is my last trip, I am fairly certain it will feel like the longest.
I hope to be out of here before the 4th of July holiday. I will be celebrating both my 33rd birthday and Father's Day here this week.
The kids are growing fast. Nevaeh and Alivia are home with a sitter (Alex) this summer. Jonah and Layla are still in daycare. Jonah just cut his first tooth and before long he will be crawling. Nevaeh starts kindergarten this fall. Kids are growing so fast.
Thanks for the prayers. We are nearing the end of this...
I suppose it's the steroids doing it, but my numbers (white cells and ANC) have actually been climbing since I got here. Hemoglobin and platelets are holding steady. The last time we started treatment and my numbers climbed like this, it was my shortest trip. Here's hoping...
This should be my final round of chemo. Then we wait and see if I relapse. The good news is I feel well. The bad news, since this is my last trip, I am fairly certain it will feel like the longest.
I hope to be out of here before the 4th of July holiday. I will be celebrating both my 33rd birthday and Father's Day here this week.
The kids are growing fast. Nevaeh and Alivia are home with a sitter (Alex) this summer. Jonah and Layla are still in daycare. Jonah just cut his first tooth and before long he will be crawling. Nevaeh starts kindergarten this fall. Kids are growing so fast.
Thanks for the prayers. We are nearing the end of this...
Sunday, April 24, 2011
Cheap Medicine: Pile o' Frogs
So back at the farm a couple of weeks ago... it was a particularly nice day. We took the kids for a walk and I took this picture (really I did). I have often pondered, how many frogs can be stacked on top of each other. The answer is 3.
Now you know.
Upon further research, I learned that the frog on the bottom is Republican. The other 2 are Democrat. How do I know this? The top two either feel entitled to that bit of road the bottom frog has, or they expect the bottom frog to carry them across the road. Now that I lay it out, it is quite obvious isn't it.
AML: Round 5 update
I’m almost 2 weeks into my fifth round of chemo and haven’t written anything yet. Figured I would use a little time this weekend to catch up.
This round of chemo has been going fine so far. I’ve received the same drugs and treatment as last time. I’m currently on day 12 and my counts have nearly bottomed out. I feel fine. Hemoglobin was low yesterday so I got 2 units. I’ll probably need platelets tomorrow. The counts have dropped pretty much exactly the same as last time. Hopefully the recovery is faster.
This time I’ve been working fulltime while here. The days pass faster and I’m tired at the end of the day making going to sleep much easier. It has been working pretty well.
I managed to get the doc to give me a “hall pass” to leave my area of the hospital and even go outside to the patio. The problem is other then the day I came in, it has been terrible rainy\snowy and cold outside. Now that my counts are so low, I won’t be able to take advantage of it.
Guessing I’ve got a week and a half or so left in here. I’ll have one more round of chemo after this. I’m looking forward to enjoying a bit of the outdoors before my last round. Softball will start in a few weeks. I’ve got a couple of work trips lined up. We’ve got a wedding and hopefully a family roadtrip to fit in as well.
We’re getting closer to the end of this. Thanks to all for the comments and prayers.
This round of chemo has been going fine so far. I’ve received the same drugs and treatment as last time. I’m currently on day 12 and my counts have nearly bottomed out. I feel fine. Hemoglobin was low yesterday so I got 2 units. I’ll probably need platelets tomorrow. The counts have dropped pretty much exactly the same as last time. Hopefully the recovery is faster.
This time I’ve been working fulltime while here. The days pass faster and I’m tired at the end of the day making going to sleep much easier. It has been working pretty well.
I managed to get the doc to give me a “hall pass” to leave my area of the hospital and even go outside to the patio. The problem is other then the day I came in, it has been terrible rainy\snowy and cold outside. Now that my counts are so low, I won’t be able to take advantage of it.
Guessing I’ve got a week and a half or so left in here. I’ll have one more round of chemo after this. I’m looking forward to enjoying a bit of the outdoors before my last round. Softball will start in a few weeks. I’ve got a couple of work trips lined up. We’ve got a wedding and hopefully a family roadtrip to fit in as well.
We’re getting closer to the end of this. Thanks to all for the comments and prayers.
Friday, March 18, 2011
AML: Just a Little Patience...
Today finds me feeling fine, as usual, but my counts have not made any significant gains. After recovering so quickly last time, I expected to have the same reaction. Especially if you consider that I have not been sick at all this time. Of my 4 rounds, this is already my longest stay in the hospital.
I have not been provided with any explanation of why my counts have been at the bottom for so long this time. At best this is just a normal reaction (for me), at worst we have caused permanent damage to my bone marrow.
So once again I have been presented with a test of patience. I struggle with this one the most…
I have not been provided with any explanation of why my counts have been at the bottom for so long this time. At best this is just a normal reaction (for me), at worst we have caused permanent damage to my bone marrow.
Here are a few things that are different this time compared to my prior treatments:
- I have not gotten sick – my body has not had to try to fight an infection
- My doc started me on antibiotics, antifungals, and antivirals even though I had no infections.
- I was taken off of the IV fluids after the chemo. I had been connected to IVs the whole time in prior treatments.
So once again I have been presented with a test of patience. I struggle with this one the most…
Tuesday, March 15, 2011
Round 4: Week 3 update
So far so good. This round has gone well. My stomach was a little upset when getting the chemo, but here we are at day 21 and I have not had any fevers or any other side effects.
My counts bottomed out a week ago and have stayed there. There was a slight increase in my ANC a few days ago, but it went back to 0 the following day. It is still at 0. My blood count recovery isn’t happening as fast as last time, or near as fast as I would like. I am told that this is not unusual. The cumulative effects of chemo can increase recovery time. With my counts low, I don’t leave the room much.
I have received platelets twice and I believe I will be getting my second red blood transfusion today. I get Benadryl with each transfusion which will probably put me to sleep this time. I don’t mind the nap, but it makes getting to sleep at night very difficult.
My intent is to return to work (Daktronics) at the end of the week. Of course I need my counts to cooperate so I can get out of here. It usually takes about 3 days once I see some movement in my ANC for the count to be high enough to go home. I am looking forward to getting back that part of my life.
Time has passed fairly quickly mainly due to the visitors that help break up the days. The pastors from our church visit each week. This illness has provided me an opportunity to get to know them. I am thankful for that. Andrea has been able to see me most days. I am far less worried about having visitors then I had been during prior treatments.
We continue to plan our Mexico vacation (in September). Right now we are trying to line up more people to go. It’s so far away, but I know the summer will pass quickly.
I have two more treatments (mid April & the end of May). So I am almost 2/3 done with this. Hopefully that will be the end, but we’ll have to see what comes.
Thanks to all who continue to pray for us.
My counts bottomed out a week ago and have stayed there. There was a slight increase in my ANC a few days ago, but it went back to 0 the following day. It is still at 0. My blood count recovery isn’t happening as fast as last time, or near as fast as I would like. I am told that this is not unusual. The cumulative effects of chemo can increase recovery time. With my counts low, I don’t leave the room much.
I have received platelets twice and I believe I will be getting my second red blood transfusion today. I get Benadryl with each transfusion which will probably put me to sleep this time. I don’t mind the nap, but it makes getting to sleep at night very difficult.
My intent is to return to work (Daktronics) at the end of the week. Of course I need my counts to cooperate so I can get out of here. It usually takes about 3 days once I see some movement in my ANC for the count to be high enough to go home. I am looking forward to getting back that part of my life.
Time has passed fairly quickly mainly due to the visitors that help break up the days. The pastors from our church visit each week. This illness has provided me an opportunity to get to know them. I am thankful for that. Andrea has been able to see me most days. I am far less worried about having visitors then I had been during prior treatments.
We continue to plan our Mexico vacation (in September). Right now we are trying to line up more people to go. It’s so far away, but I know the summer will pass quickly.
I have two more treatments (mid April & the end of May). So I am almost 2/3 done with this. Hopefully that will be the end, but we’ll have to see what comes.
Thanks to all who continue to pray for us.
Tuesday, March 8, 2011
Cheap Medicine: Bedtime Stories
Mr Brown is telling his son a bed-time story.
"Once upon a time there was a white bunny....."
"Jeez..dad it's boring,what about science fiction?"
"Ok,Ok" Mr Brown said. "Once upon a time there was a bunny who got onto a spacecraft and...."
"Dad, a little more grown up!"
"Do you promise me not to tell your mom?" asked Mr Brown.
" I swear!"
"Ok", "Once upon a time there was a naked bunny......"
"Once upon a time there was a white bunny....."
"Jeez..dad it's boring,what about science fiction?"
"Ok,Ok" Mr Brown said. "Once upon a time there was a bunny who got onto a spacecraft and...."
"Dad, a little more grown up!"
"Do you promise me not to tell your mom?" asked Mr Brown.
" I swear!"
"Ok", "Once upon a time there was a naked bunny......"
Monday, March 7, 2011
Growing Up: Family Outings
Today finds me feeling good. So much so that the doctors removed me from my IV machine. As long as I drink enough, they will grant me my freedom from the device. I estimate I have just over a week left until I am out of here.
One of my friends commented on a post and reminded me of the outings we did when I was growing up. I thought it would make a great topic to write about. As I reflect on how I was raised, there are a great many things I count as blessings. Growing up with a close extended family is one of them...
A little background...
My Mom and Dad grew up near the tiny, rural community of Carpenter, SD (wiki). It happened that as my parents started a family, as did many of their cousins and friends that lived near by. So I grew up with a core group of families (Wick's, Opsahls, Ficks, and cousin Granns) with kids almost exactly the same age.
I have a lot of memories of growing up with this crew, many of which center on the camping an fishing trips we'd take together. The state parks near Lake Ponsitte and Lake Pelican were frequent camping locations. The area in eastern South Dakota had a lot of fishing options.
Camping was fairly typical; sleeping in tents and cooking over a campfire. Ok, I don't remember much cooking over campfires, but I do remember plenty of sandwiches, snacks and pans of bars.
Here are a few memories related to these outings.
One of my friends commented on a post and reminded me of the outings we did when I was growing up. I thought it would make a great topic to write about. As I reflect on how I was raised, there are a great many things I count as blessings. Growing up with a close extended family is one of them...
A little background...
My Mom and Dad grew up near the tiny, rural community of Carpenter, SD (wiki). It happened that as my parents started a family, as did many of their cousins and friends that lived near by. So I grew up with a core group of families (Wick's, Opsahls, Ficks, and cousin Granns) with kids almost exactly the same age.
I have a lot of memories of growing up with this crew, many of which center on the camping an fishing trips we'd take together. The state parks near Lake Ponsitte and Lake Pelican were frequent camping locations. The area in eastern South Dakota had a lot of fishing options.
Camping was fairly typical; sleeping in tents and cooking over a campfire. Ok, I don't remember much cooking over campfires, but I do remember plenty of sandwiches, snacks and pans of bars.
Here are a few memories related to these outings.
- The Leeches:
I don't remember many specific memories from when I was real little, but I do recall this one quite vividly. Not sure how old I was; probably around 8 or 9. Our group of families was looking for a place for the men to fish and us young'ns to play in the water. There was a small lake called Lake Dudley fairly close. We were all excited when we got there to find the water totally clear (unusual for SD in the summer) and we settled in for a good afternoon of swimming and fishing. Now, I should mention you probably never saw a sweeter bunch of kids then our crew. Evidently the leeches in the water agreed, because we were covered. I believe swimming was done for the day and we ended up fishing at Lake Byron. - Bullheads:
When fishing, of course the intent was to get nice sized walleye, perch or crappie for frying. As a kid, I recall having the most fun catching bullheads and bluegill. If you could get into them, you'd end with a bucket off bullheads to fry. It's been years since I've eaten a bullhead. 
- Killing of Staums Dam:
When I was around 12, the Game, Fish and Parks killed off all the fish in nearby Staums dam. I believe the effort was to kill off the junk fish and then repopulate with bass and better stock. I am not sure how they did it, but I believe chemicals were added that would essentially suffocate the fish, leaving them safe for eating. It became an event. I recall us collecting nearly 100 fish that day. I've got picture at home of this, I'll try to add some time. - Water Skiing:
As we got older, we thought we'd give water skiing a try. I think cousin Jeremy took to it the fastest, but over time, we all got the hang of it and fun was had by all. - Sandworks
Cousin Jeremy was generally the architect of the sand castles and related sand construction as we played on the beach between swimming sessions. He could spend hours constructing and building water ways...only to have his younger sister Teresa play the role of Godzilla and destroy his hard work. Whether he was done with it or not. - Stop spitting out the window!
OK, this one was later in life when my generation was of legal age to enjoy adult beverages. I don't want to provide specifics should someone become embarrassed, but those that were there know what happened. Ask me about it sometime and I may tell you the story.
I'll add more storys if anyone can help jog my memory. Since we're now in Sioux Falls, it will take more effort to provide these experiences for our kids as often as we did them when we were young. I hope we will all take the opportunity when we can.
Don't forget we're looking for others to join us in Mexico (More info).
Saturday, March 5, 2011
Join us in Mexico?
Andrea an I are planning a trip for our 10 year anniversary. We are putting out the invite in case anyone is interested in joining us. Family... friends... acquaintances... whoever.
Here are the details (View Vacation Page) as we plan our trip to Secrets Maroma Beach Riviera Cancun.
Here are the details (View Vacation Page) as we plan our trip to Secrets Maroma Beach Riviera Cancun.
AML: What's for Dinner?
I continue to do well with my 4th chemo treatment. I am feeling good and I have not had any significant side effects. I felt a little inspired by my luch today, so I figured I'd write some more about food.
When my whole adventure with AML started, I dropped just over 40 pounds. Once we got everything under control, my appetite returned.
It would have been nice to keep those pounds off, but it's not in my genetics. I have regained most of those 40 back. It might have been the holidays, but I primarily blame the quality of the food here at Sanford Hospital.
I've mentioned it in prior posts, but thought I would elaborate should anyone fine themselves in the hospital for an extended stay.
I have 2 menus I can order from every day. Sanford features something called Dakota Dining. It's kind of a "made to order" menu. I can also order what I want from the cafeteria menu. Dakota Dining menu items are always available (like eating at a restaurant) while the cafeteria specials change every day, providing some variety.
I am not going to list everything but here a few of my favorites:
Breakfast: Omelets (I go with cheese, ham and onions), biscuts and gravy, pancakes, waffles, french toast, fresh fruit, ham, canadian bacon, sausage, bacon
Lunch or dinner: Grilled Salmon, grilled pork tenderloin, BBQ ribs, Tanka dog (a hotdog made with buffalo), Lasagna, Pot Roast, Lemon pepper cod, potato crusted tilapia, chicken ceaser pasta salad
I can choose from a variety of soups each day. Chicken gumbo and chicken tortilla are my favorites. I can also order from the deli to build my own sandwiches (roast beef, swiss on white) or from the grill where I can order burgers, chicken, hot dogs and fries.
Then there are desserts: cheese cake brownie, apple pie (w/ ice cream), french silk pie, sherbets. I can also order fruit smoothies, milk shakes or malts when ever I want.
This is just a sampleing... my favorites. The only issue I run into is that the carriers they use to transport the food can result in some items loosing their crispiness (Ex: fries, waffles).
The care here is excellent, and the quality of food just one thing that helps make these extended stays bareable.
Thanks to all that have been following along. I have struggled to come up with ideas to write about, so let me know if anyone out there has questions. Take care...
When my whole adventure with AML started, I dropped just over 40 pounds. Once we got everything under control, my appetite returned.
It would have been nice to keep those pounds off, but it's not in my genetics. I have regained most of those 40 back. It might have been the holidays, but I primarily blame the quality of the food here at Sanford Hospital.
I've mentioned it in prior posts, but thought I would elaborate should anyone fine themselves in the hospital for an extended stay.
I have 2 menus I can order from every day. Sanford features something called Dakota Dining. It's kind of a "made to order" menu. I can also order what I want from the cafeteria menu. Dakota Dining menu items are always available (like eating at a restaurant) while the cafeteria specials change every day, providing some variety.
I am not going to list everything but here a few of my favorites:
Breakfast: Omelets (I go with cheese, ham and onions), biscuts and gravy, pancakes, waffles, french toast, fresh fruit, ham, canadian bacon, sausage, bacon
Lunch or dinner: Grilled Salmon, grilled pork tenderloin, BBQ ribs, Tanka dog (a hotdog made with buffalo), Lasagna, Pot Roast, Lemon pepper cod, potato crusted tilapia, chicken ceaser pasta salad
I can choose from a variety of soups each day. Chicken gumbo and chicken tortilla are my favorites. I can also order from the deli to build my own sandwiches (roast beef, swiss on white) or from the grill where I can order burgers, chicken, hot dogs and fries.
Then there are desserts: cheese cake brownie, apple pie (w/ ice cream), french silk pie, sherbets. I can also order fruit smoothies, milk shakes or malts when ever I want.
This is just a sampleing... my favorites. The only issue I run into is that the carriers they use to transport the food can result in some items loosing their crispiness (Ex: fries, waffles).
The care here is excellent, and the quality of food just one thing that helps make these extended stays bareable.
Thanks to all that have been following along. I have struggled to come up with ideas to write about, so let me know if anyone out there has questions. Take care...
Friday, March 4, 2011
Cheap Medicine:
Family Outings
The memories of my family outings are still a source of strength to me.
I remember we'd all pile into the car- I forgot what kind it was- and drive and drive. I'm not sure where we'd go, but I think there were some trees there. The smell of something was strong as we played whatever sport we played. I remember a bigger, older guy we called "Dad". We'd eat some stuff, or not, and then I think we went home.
I guess some things never leave you. -- Jack Handy
I remember we'd all pile into the car- I forgot what kind it was- and drive and drive. I'm not sure where we'd go, but I think there were some trees there. The smell of something was strong as we played whatever sport we played. I remember a bigger, older guy we called "Dad". We'd eat some stuff, or not, and then I think we went home.
I guess some things never leave you. -- Jack Handy
Monday, February 28, 2011
AML: Round 4, Week 1 Update
I finished my chemo for this round yesterday. This treatment was the same as the prior round. I am getting high doses of cyterabine every other day for 5 days. Was very tired the first 2 days and have become less so over the rest of the week.
Unlike the last 2 rounds, I am dealing with some nausea. It has been pretty mild and manageable. The nausea seems to be passing now that the actual administration of the chemo is done. The doctor said that with some patients the nausea does get worse with each treatment. That has me somewhat concerned about the cumulative effect of all these treatments.
The doctor visits every day, but the visits are short. Other then the mild stomach issues I have no other problems to report. Today he commented "You're doing very well considering the high dose of chemo you are getting". I'll try to remember to ask what condition he expects I should be in.
So now we are waiting again. My counts have dropped a bit since I got here (as they should). They will continue to fall for the next week. I am hoping that my visit here will be no more than 3 weeks.
Andrea's mom, Marsha, stayed with Andrea and the kids last week so Andrea got to come visit everyday. I can't tell you how much easier it has made the first week. I've been able to see the kids a bit too. They can't come to my room because they are not allowed in my wing, but we make it work. I had such a craving for Wendy's of all things so Andrea brought me lunch yesterday (spicy chicken Sandwich & fries). I'm usually begging for a Godfathers combo pizza right about now, but will wait a few days for my stomach to settle down before I annihilate one of those.
The week has passed quickly. I am thankful for that. Family and friends continue to be a blessing, helping us out in so many ways.
Unlike the last 2 rounds, I am dealing with some nausea. It has been pretty mild and manageable. The nausea seems to be passing now that the actual administration of the chemo is done. The doctor said that with some patients the nausea does get worse with each treatment. That has me somewhat concerned about the cumulative effect of all these treatments.
The doctor visits every day, but the visits are short. Other then the mild stomach issues I have no other problems to report. Today he commented "You're doing very well considering the high dose of chemo you are getting". I'll try to remember to ask what condition he expects I should be in.
So now we are waiting again. My counts have dropped a bit since I got here (as they should). They will continue to fall for the next week. I am hoping that my visit here will be no more than 3 weeks.
Andrea's mom, Marsha, stayed with Andrea and the kids last week so Andrea got to come visit everyday. I can't tell you how much easier it has made the first week. I've been able to see the kids a bit too. They can't come to my room because they are not allowed in my wing, but we make it work. I had such a craving for Wendy's of all things so Andrea brought me lunch yesterday (spicy chicken Sandwich & fries). I'm usually begging for a Godfathers combo pizza right about now, but will wait a few days for my stomach to settle down before I annihilate one of those.
The week has passed quickly. I am thankful for that. Family and friends continue to be a blessing, helping us out in so many ways.
Friday, February 25, 2011
Cheap Medicine: Our Anniversary
On the 26th of January, Andrea and I celebrated our 9th anniversary.
If asked "What have I learned from all those wonderful years with my wife?"
I would respond, "Well, I've learned that marriage is the best teacher of all. It teaches you loyalty, forbearance, meekness, self-restraint, forgiveness --and a great many other qualities you wouldn't have needed if you'd stayed single."
If asked "What have I learned from all those wonderful years with my wife?"
I would respond, "Well, I've learned that marriage is the best teacher of all. It teaches you loyalty, forbearance, meekness, self-restraint, forgiveness --and a great many other qualities you wouldn't have needed if you'd stayed single."
Thursday, February 24, 2011
AML: Round 4... Full House
I am back in Sanford for round 4 of my chemo treatments to treat my acute myeloid leukemia (AML). I have resided on the 6th floor - C wing of Sanford Hospital for all my treatments since I was diagnosed Sept 23rd, 2010. The C wing is mainly for leukemia and blood cancers.
I guess it has been pretty busy here the last few weeks. It's a full house. When I was checking in, there was only one room available on the C wing and it was being assigned to someone else who checked in just before me. I was going to be assigned a room somewhere else in the hospital with a staff I would have been mostly unfamiliar with.
But, it's nice to be popular...
The C wing nurse assigning rooms was one of my nurses from a prior treatment. Evidently she saw my name come through, reassigned the other person and slipped me into the last room on C wing. I'd like to think it's my sparkling personality that has endeared me to the nurses here, but I am guessing it is becasue I am pretty low maintenance.
I'm by far the youngest person on the wing this time and by the looks of it I am one of the few capable of getting around on my own. That being said, I am relatively sure everyone else on the floor will be released before I am. Only a very few patients have the extended stays that I do.
So I am settled back in to the C wing now. I don't have one of the special rooms with my own air flow, but I imagine I will be moved in a week or so when my counts start dropping. For now, it's like being back in the college dorm. I have my door open so I can see people passing by and I feel like I have a hangover... yep, just like college.
The treatment for round 4 is exactly the same as my prior round. The doctor tells the the cumulative effect of the chemo over multiple rounds is what is probably making me so much more tired this time. The doc has also made it very clear that I will not be going home until fully recovered this time. I am getting the impression he doesn't care for my suggestions regarding my treatment.
I am settled back into a familiar place with familiar people undergoing a treatment I am familiar with. Familiar is good.
On a final note: We had planned a family trip to the cities for last weekend, but canceled because of the weather. Turned out to be a good decision. It was super icy in Sioux Falls and the cities got something like 15" of snow. We had a lot of fun in town. We took the kids bowling and to movies. Andrea and I even imagined to get away and do a little shopping.
I guess it has been pretty busy here the last few weeks. It's a full house. When I was checking in, there was only one room available on the C wing and it was being assigned to someone else who checked in just before me. I was going to be assigned a room somewhere else in the hospital with a staff I would have been mostly unfamiliar with.
But, it's nice to be popular...
The C wing nurse assigning rooms was one of my nurses from a prior treatment. Evidently she saw my name come through, reassigned the other person and slipped me into the last room on C wing. I'd like to think it's my sparkling personality that has endeared me to the nurses here, but I am guessing it is becasue I am pretty low maintenance.
I'm by far the youngest person on the wing this time and by the looks of it I am one of the few capable of getting around on my own. That being said, I am relatively sure everyone else on the floor will be released before I am. Only a very few patients have the extended stays that I do.
So I am settled back in to the C wing now. I don't have one of the special rooms with my own air flow, but I imagine I will be moved in a week or so when my counts start dropping. For now, it's like being back in the college dorm. I have my door open so I can see people passing by and I feel like I have a hangover... yep, just like college.
The treatment for round 4 is exactly the same as my prior round. The doctor tells the the cumulative effect of the chemo over multiple rounds is what is probably making me so much more tired this time. The doc has also made it very clear that I will not be going home until fully recovered this time. I am getting the impression he doesn't care for my suggestions regarding my treatment.
I am settled back into a familiar place with familiar people undergoing a treatment I am familiar with. Familiar is good.
On a final note: We had planned a family trip to the cities for last weekend, but canceled because of the weather. Turned out to be a good decision. It was super icy in Sioux Falls and the cities got something like 15" of snow. We had a lot of fun in town. We took the kids bowling and to movies. Andrea and I even imagined to get away and do a little shopping.
Wednesday, February 16, 2011
AML: Round 4... Road Trip First
On Friday I had may regular appt with my oncologist. I am still in remission. My counts are back in the normal range (hemoglobin is a tad low, but that is normal for someone going through chemo).
The doctor confirmed that I will have 3 more treatments. I go back in on Feb 22nd. At this rate I am hoping to be done with treatments by June.
Unfortunately, the doctor is not going to let me go home after the chemo to wait out my recovery this time. So I will be in for the duration (about 3 weeks). With that in mind we are planning a little family road trip to the Twin Cities this weekend. My parents and sisters's family will be joining us. (6 adults, 5 kids.)
Family time is so important to maintaining my sanity through this whole thing. For me that applies to my extended family as well. I have a close group of aunts, uncles and cousins. I had the Christmas holiday before my last treatment and will be creating my own holidays as needed to make sure I have excuses to get people together.
I get asked often, so I thought I'd recap how my treatments work. The first 2 rounds of induction chemo were to kill the active leukemia cells in my body. Because AML is so aggressive, most people without bone marrow transplant relapse fairly quickly (1-2 years). The following 4 rounds of consolidation chemo are intended to make sure it does not come back. I don't have a related bone marrow donor so we have decided to see if the chemo is enough. Based on what I have been told, there is a 33% chance that chemo alone will be enough to keep the leukemia away. I am optimistic because of my age and my response so far. You can read by earlier post about my chemo\bone marrow decision here.
I'll be writing more regularly since I am headed back for round 4.
Tuesday, January 25, 2011
Cheap Medicine: Survey Says...
The most recent survey on women showed that 10 percent of the men interviewed liked women with thin legs. Another 15% preferred muscular legs. The rest liked something in-between.
Monday, January 24, 2011
AML:
Big Week, Big Numbers!
A nice surprise today. I had a big jump in my blood count numbers. My white cells almost doubled since yesterday. Platelets are almost back to the "normal" range. With my ANC almost to 1000, I should get out of here.
I am guessing that they'll stop antibiotics this afternoon and keep me another night.
Wednesday is our 9th wedding anniversary and I am excited that I may be out of here to celebrate it with Andrea.
We're planning a family road trip to the Twin Cities for the middle of Feb. I think my parents are joining us. Getting away with the family is important for me to recharge a bit before my next treatment.
Counts:
1/22: WBC:0.7 HGB: 9.7 PLT: 45,000 ANC: 77
1/23: WBC:1.5 HGB: 9.2 PLT: 81,000 ANC:240
1/24: WBC:2.6 HGB: 9.7 PLT:141,000 ANC:988
White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)
I am guessing that they'll stop antibiotics this afternoon and keep me another night.
Wednesday is our 9th wedding anniversary and I am excited that I may be out of here to celebrate it with Andrea.
We're planning a family road trip to the Twin Cities for the middle of Feb. I think my parents are joining us. Getting away with the family is important for me to recharge a bit before my next treatment.
Counts:
1/22: WBC:0.7 HGB: 9.7 PLT: 45,000 ANC: 77
1/23: WBC:1.5 HGB: 9.2 PLT: 81,000 ANC:240
1/24: WBC:2.6 HGB: 9.7 PLT:141,000 ANC:988
White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)
Saturday, January 22, 2011
AML:
CT Scan Results....Counts Movin on Up
Early today I had a CT scan of my abdomen. Preliminary results are back already. All lesions on my on liver are gone. They see nothing else wrong. I haven't had a reaction to the CT dye yet, but it's a bit early to tell.
Best news: Numbers are climbing. Platelets recover the fastest and they are coming up nicely. My white counts have jumped nicely too.
No fevers today (helped by my rising white counts). I am probably done with transfusions. When my ANC hits 500 they stop the antibiotics and if the fevers do not come back, I go home.
Counts:
1/21: WBC:0.5 HGB: 9.1 PLT:32,000 ANC: 5
1/22: WBC:0.7 HGB: 9.7 PLT:45,000 ANC:77
White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)
Best news: Numbers are climbing. Platelets recover the fastest and they are coming up nicely. My white counts have jumped nicely too.
No fevers today (helped by my rising white counts). I am probably done with transfusions. When my ANC hits 500 they stop the antibiotics and if the fevers do not come back, I go home.
Counts:
1/21: WBC:0.5 HGB: 9.1 PLT:32,000 ANC: 5
1/22: WBC:0.7 HGB: 9.7 PLT:45,000 ANC:77
White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)
Friday, January 21, 2011
AML:
Getting my CAT Scanned
I get visits from an infectious disease doctor. These are the doctors that diagnosed my aspergillus my first time through. They make sure we have identified the infections correctly and are treating it the right way.
A short visit is a good sign. It means that things are progressing as they should. When something isn’t quite right, I get tests…
I have suspected that my aspergillus infection may not have been completely cured. I have developed an allergy to the contrast dye they give you when having a CT (CAT) scan. So at my last scan, they did it without. This means they could not clearly see things in my abdomen. Since the infection was affecting my liver, I was unclear how they were able to tell the infection was gone. I raised this concern with the infectious disease doctor Friday since I am still running fevers.
He evidently thought the idea had merit. I am scheduled (8am Sat) to get a CT Scan of my chest and abdomen. In order to try to avoid an allergic reaction, I have been put on steroids (Prednisone) and will get a shot of Benadryl before the CT Scan.
They will also see if they notice any problems with my gastrointestinal tract which I am told is the most likely source of the e Coli infection.
If I have a reaction, and it is like the last time, I’ll turn bright red like a sunburn and itch all over. It’s not a life threatening reaction, but it makes me very uncomfortable.
I’ll update you more tomorrow…
A short visit is a good sign. It means that things are progressing as they should. When something isn’t quite right, I get tests…
I have suspected that my aspergillus infection may not have been completely cured. I have developed an allergy to the contrast dye they give you when having a CT (CAT) scan. So at my last scan, they did it without. This means they could not clearly see things in my abdomen. Since the infection was affecting my liver, I was unclear how they were able to tell the infection was gone. I raised this concern with the infectious disease doctor Friday since I am still running fevers.
He evidently thought the idea had merit. I am scheduled (8am Sat) to get a CT Scan of my chest and abdomen. In order to try to avoid an allergic reaction, I have been put on steroids (Prednisone) and will get a shot of Benadryl before the CT Scan.
They will also see if they notice any problems with my gastrointestinal tract which I am told is the most likely source of the e Coli infection.
If I have a reaction, and it is like the last time, I’ll turn bright red like a sunburn and itch all over. It’s not a life threatening reaction, but it makes me very uncomfortable.
I’ll update you more tomorrow…
AML:
I got a fever, and the only prescription is...
I had four great days at home. I felt good the whole time and with Andrea still on maternity leave, we had some quality time together.
Unfortunately I started running a fever about 1:30 am on Tuesday morning. I drove myself to the emergency room and was readmitted to Sanford hospital.
Once admitted, they started looking for the source of the infection. Basically, they took blood cultures and we would have to wait a few days for the results. In the meantime, they started pumping me full of antibiotics and antifungals to start treating whatever the infection might be. They could tell the first day that my blood tested positive for something called a “gram negative rod” bacteria.
I started feeling a bit better after being treated a day or so. It turns out as the blood cultures matured; I had an e Coli infection in my blood stream. They suspected the PICC line was the source of the infection. So my PICC was removed.
Removing a PICC line is something interesting to witness. It’s done bedside and basically the nurse just pulls it out. My PICC was 50cm (19 inches). It ran inside my basilic vein (I think) from just above my right elbow to above my heart. So… picture a nurse steadily pulling this long plastic tube out of my arm. It is a funny feeling, but strangely there is hardly any blood.
Since being back in the hospital, I have received platelets twice and hemoglobin once. They thought I was haveing a reaction during my 2nd unit of hemoglobin, so they stopped halfway through.
I still need fluids, meds and maybe more transfusions. With my PICC line gone I now have a single IV line in my left arm. They also cut back on the antibiotics now that they know what the infection is.
My fevers have been coming and going since being back in the hospital. Headaches have been frequent as well. The antibiotics are holding the infection off, but the best thing is for my white blood counts to start recovering so I can take care of the infection myself. Tylenol manages the fevers and I get morphine if the headaches get a little strong. Appetite is getting better as well.
I definitely don’t regret my decision to go home for those few days. I probably would have had the infection regardless. Having that break in the middle of the long hospital stay made this go around go by so much faster.
Unfortunately I started running a fever about 1:30 am on Tuesday morning. I drove myself to the emergency room and was readmitted to Sanford hospital.
Once admitted, they started looking for the source of the infection. Basically, they took blood cultures and we would have to wait a few days for the results. In the meantime, they started pumping me full of antibiotics and antifungals to start treating whatever the infection might be. They could tell the first day that my blood tested positive for something called a “gram negative rod” bacteria.
I started feeling a bit better after being treated a day or so. It turns out as the blood cultures matured; I had an e Coli infection in my blood stream. They suspected the PICC line was the source of the infection. So my PICC was removed.
Removing a PICC line is something interesting to witness. It’s done bedside and basically the nurse just pulls it out. My PICC was 50cm (19 inches). It ran inside my basilic vein (I think) from just above my right elbow to above my heart. So… picture a nurse steadily pulling this long plastic tube out of my arm. It is a funny feeling, but strangely there is hardly any blood.
Since being back in the hospital, I have received platelets twice and hemoglobin once. They thought I was haveing a reaction during my 2nd unit of hemoglobin, so they stopped halfway through.
I still need fluids, meds and maybe more transfusions. With my PICC line gone I now have a single IV line in my left arm. They also cut back on the antibiotics now that they know what the infection is.
My fevers have been coming and going since being back in the hospital. Headaches have been frequent as well. The antibiotics are holding the infection off, but the best thing is for my white blood counts to start recovering so I can take care of the infection myself. Tylenol manages the fevers and I get morphine if the headaches get a little strong. Appetite is getting better as well.
I definitely don’t regret my decision to go home for those few days. I probably would have had the infection regardless. Having that break in the middle of the long hospital stay made this go around go by so much faster.
Monday, January 17, 2011
AML:
PICC Line & Glad Press'n Seal
I thought I'd offer this one up incase someone else is going through something similar.
I am in the middle of my chemo for my AML. As a result, I have a PICC line in my arm so we can do daily blood work, meds and transfusions if needed.
We have to keep the PICC dressing dry when I shower. In the hospital we wrap it with a plastic bag and wrap it in tape. I didn't have anything similar at home. Andrea came up with the idea of using Press 'n Seal.
I love that stuff for everything you can use it for in the kitchen. Turns out it is perfect water proof wrap for my PICC line. It sticks to itself so well that I can wrap it tightly around my arm, but it does not stick to my skin. Works great. It even has some give to it so I can bend my arm a bit (the wrap goes around my elbow to compeltely cover the dressing and lines)
I am in the middle of my chemo for my AML. As a result, I have a PICC line in my arm so we can do daily blood work, meds and transfusions if needed.
We have to keep the PICC dressing dry when I shower. In the hospital we wrap it with a plastic bag and wrap it in tape. I didn't have anything similar at home. Andrea came up with the idea of using Press 'n Seal.
I love that stuff for everything you can use it for in the kitchen. Turns out it is perfect water proof wrap for my PICC line. It sticks to itself so well that I can wrap it tightly around my arm, but it does not stick to my skin. Works great. It even has some give to it so I can bend my arm a bit (the wrap goes around my elbow to compeltely cover the dressing and lines)
Friday, January 14, 2011
AML:
Waiting for Nadir... @ Home
It's so nice to be at home rather then waiting this out in the hospital. Everything is going fine so far.
I have to do daily blood work to see if I need blood or platelets. During the weekend I go to the outpatient area of Sanford hospital at 7:00 am. During the week, I will go to my Dr's office. I still have my PICC line in my arm, so I don't need to be stuck by needles all the time.
I will get blood if my hemoglobin falls below 8. (today it is 11.9 and has not really fallen at all since the chemo). I will get platelets if they fall below 10,000. (today they are 22,000). If I run a fever of 100.4 I have to go back to be readmitted to the hospital.
With my white counts so low, we are avoiding visitors at home and I am being extra careful around my wife and kids. We're adjusting so far.
All is going fine on the home front.
I have to do daily blood work to see if I need blood or platelets. During the weekend I go to the outpatient area of Sanford hospital at 7:00 am. During the week, I will go to my Dr's office. I still have my PICC line in my arm, so I don't need to be stuck by needles all the time.
I will get blood if my hemoglobin falls below 8. (today it is 11.9 and has not really fallen at all since the chemo). I will get platelets if they fall below 10,000. (today they are 22,000). If I run a fever of 100.4 I have to go back to be readmitted to the hospital.
I have not needed any transfusions this weekend. It looks like my platelets may be low enough that I would need them tomorrow. My hemoglobin is actually higher then when I had my chemo. If I can avoid getting hemoglobin this go around, I'll be happy. It takes several hours to get hemoglobin. Platelets are much faster.
I expect that my counts will hit bottom towards the middle of this week (10 days after my chemo). I am not on any meds right now. I feel good with a healthy appetite.With my white counts so low, we are avoiding visitors at home and I am being extra careful around my wife and kids. We're adjusting so far.
All is going fine on the home front.
Thursday, January 13, 2011
AML:
Home Sweet Home
Recommended soundtrack for this post: Motley Crue's Home Sweet Home.
So... I am going to give it a try and wait out my nadir and recovery at home. I am still nervous about it, but every nurse I ask for their opinion all said the same thing... "you can get sick in the hospital too, go home."
Should this go well, it will mean something significant for the rest of my treatments. The prospect of spending only a week in the hospital at a time is much more appealing then spending 3 weeks.
Tonight, tonight... I'm on my way, I'm on my way, Home sweet home...
So... I am going to give it a try and wait out my nadir and recovery at home. I am still nervous about it, but every nurse I ask for their opinion all said the same thing... "you can get sick in the hospital too, go home."
Should this go well, it will mean something significant for the rest of my treatments. The prospect of spending only a week in the hospital at a time is much more appealing then spending 3 weeks.
Tonight, tonight... I'm on my way, I'm on my way, Home sweet home...
Medicine for the Soul:
Favorite Burrito
I figured I'd post now and then about the places I like to eat... I'll start local first.
I love Mexican food. At least as close as we can get in South Dakota. In Sioux Falls, Inca and Puerta Vallarta are safe bets. In Brookings, Guadalajara's is great.
However, my single favorite mexican dish in Sioux Falls is the Pork Fajita Burrito @ Casa Del Rey. I have a weakness for chile-verde and the pork loin\verde\peppers combination has everything I love in mexican food. Since the place is bit off the beaten path, it's generally not all that busy. For Andrea & I, Casa del Rey is our go to Mexican place in SF (I hate crowds & waiting for food).
Anyone care to suggest a better mexican dish in SF? I'll put my best effort forward to sample them all.
Incidentally, if you are passing through Brookings & are craving burritos or a quesadilla, stop at the BP station right off the interstate and try Taco Express. Admittedly these are as far from authentic mexican, but the portions are big and the food is mighty tasty. It's my favorite place to grab lunch in Brookings. I recommend the shredded beef; then load up with beans, rice, veggies and don't forget to ask for the chipotle ranch sauce... have them grill it of course.
"To eat is a necessity, but to eat intelligently is an art." - some old french dude.
Cheap Medicine:
Take Off My Clothes
My wife came home the other night and told me to take off her blouse.
Then she told me to take off her skirt.
Then she told me not to wear her clothes anymore.
Then she told me to take off her skirt.
Then she told me not to wear her clothes anymore.
Wednesday, January 12, 2011
AML:
Should I Stay or Should I go...
I suggest reading this post with the Clash's "Should I Stay or Should I Go" playing in the background.
Background: My chemo ended 3 days ago (Sunday) and I have had no side effects from it. My numbers are falling as they should (albeit slowly). I am waiting for my blood counts to bottom and then recover... just waiting.
I was presented with an interesting option today. My case manager commented on how well I was doing. She suggested that we see if I can go home and wait things out there. Andrea was with me at the time. Neither of us had even entertained the thought.
So we spent all afternoon excited by the prospect. When my doctor came to do his rounds (he generally comes about 5:30pm) he didn't really direct me one way or another. Said it was up to me. We talked for a bit and as he left, he said we'll see if we can get you out of here tomorrow.
So here I am... I was excited all day about the chance that I might get out, but now I am extremely nervous at the thought. I am most comfortable at home but I feel the safest here. I'm guessing that I've got about 2 weeks left for my numbers to bottom and recover. This is the time I am most susceptible to infection. So... should I stay or should I go?
I have not made up my mind yet. I understand that my case manager is mainly focused at keeping the hospital bills in check, but I know her (her daughter & my wife are friends) so I trust that she is not suggesting something that would put me at risk. I've asked a couple of nurses here, they are encouraging me to head home if I have the option. They suggested patients generally do better at home. Both the case manager and nurses have said, if you're going to get sick, you're going to get sick and we'll deal with it then.
I am literally 10 min from the hospital when @ home. If I run a fever I know I need to come back ASAP. They will check me back in and give me antibiotics. I'll need to have blood work done each day to know when I need to receive blood or platelets. All this can be done on a outpatient basis. Still, I am nervous.
At home I have four kids coming and going from school and daycare. All have had flu shots. Other than some runny noses, everyone is healthy. So... should I stay or should I go?
For now, I am going to sleep on it.
Don't miss tomorrow's episode for the exciting conclusion...
Background: My chemo ended 3 days ago (Sunday) and I have had no side effects from it. My numbers are falling as they should (albeit slowly). I am waiting for my blood counts to bottom and then recover... just waiting.
I was presented with an interesting option today. My case manager commented on how well I was doing. She suggested that we see if I can go home and wait things out there. Andrea was with me at the time. Neither of us had even entertained the thought.
So we spent all afternoon excited by the prospect. When my doctor came to do his rounds (he generally comes about 5:30pm) he didn't really direct me one way or another. Said it was up to me. We talked for a bit and as he left, he said we'll see if we can get you out of here tomorrow.
So here I am... I was excited all day about the chance that I might get out, but now I am extremely nervous at the thought. I am most comfortable at home but I feel the safest here. I'm guessing that I've got about 2 weeks left for my numbers to bottom and recover. This is the time I am most susceptible to infection. So... should I stay or should I go?
I have not made up my mind yet. I understand that my case manager is mainly focused at keeping the hospital bills in check, but I know her (her daughter & my wife are friends) so I trust that she is not suggesting something that would put me at risk. I've asked a couple of nurses here, they are encouraging me to head home if I have the option. They suggested patients generally do better at home. Both the case manager and nurses have said, if you're going to get sick, you're going to get sick and we'll deal with it then.
I am literally 10 min from the hospital when @ home. If I run a fever I know I need to come back ASAP. They will check me back in and give me antibiotics. I'll need to have blood work done each day to know when I need to receive blood or platelets. All this can be done on a outpatient basis. Still, I am nervous.
At home I have four kids coming and going from school and daycare. All have had flu shots. Other than some runny noses, everyone is healthy. So... should I stay or should I go?
For now, I am going to sleep on it.
Don't miss tomorrow's episode for the exciting conclusion...
Medicine for the Soul:
Oven Roasted Beef Brisket
I love cooking a brisket, especially for a large group. Great favor and relatively cheap. I have smoked them in the past, but it's usually more work then I prefer. I have good luck roasting them in the oven. Here is how I do it.
Again, I usually cook for a large group so I end up getting about a 12-14 pound whole beef brisket from Sam's Club.
Prepping the Brisket:
Trim the thickest of the fat from the meat. You don't want to remove all the fat cap, but you don't want 1/2 inch thick chunks of fat to deal with after cooking.
A whole brisket has 2 muscles: the point & the flat. The flat is the thinner part that runs the length of a whole brisket. I prefer to separate these two pieces of meat to make the cooking time a bit more even. You have to separate them after cooking anyway since the grain of the 2 muscles run in different directions. The point lays on top of the flat. Lay the whole brisket fat side up and it should be pretty obvious where to start separating the muscles. Look at the thick end. You can usually start separating by hand then cut the connective tissue as you go.
If you are not comfortable cutting them apart, cook the brisket whole until the flat gets to the right temp. Then separate the point from the flat (it will be easy). Return the point to the oven and cook until finished.
The Rub:
I've had briskets with peppery rubs on them. I like them that way, but many I cook for don't. Plus since I am doing this in the oven, I'm a little careful of adding too much salt or spicy rubs that would work better if I was smoking the brisket. If I want spice, I get it from the BBQ sauce added at the end. That way everyone gets the level of heat they want.
The all purpose rub I use for beef, pork & chicken is Emeril's Essence. I get mine pre-made in the seasonings section at Sam's Club. Or use his recipe (from foodnetwork.com):
Emeril's Essence - Ingredients:
2 1/2 tablespoons paprika
2 tablespoons salt
2 tablespoons garlic powder
1 tablespoon black pepper
1 tablespoon onion powder
1 tablespoon cayenne pepper
1 tablespoon dried oregano
1 tablespoon dried thyme
Add a liberal amount of the rub to all sides of the brisket. It's a lot of meat, so don't be stingy. on the rub. Like it a bit sweeter rub, add a bit of brown sugar to the Essence.
Roasting the Brisket:
Set oven to 350.
Place the brisket in a roasting pan, fatty side up. I usually place a rack under mine to get the meat off the bottom of the pan, but it's probably not a big deal.
Cook uncovered for an hour.
Add 1 1/2 cups of beef stock and enough water to fill the bottom of the roasting pan about 1/2 an inch. Lower oven temp to 300. Cover the pan tightly with foil and roast for about 2 1/2 hours. Start checking the internal temp of the meat. Pull the brisket out when it reaches an internal temp of 185 degrees. Let it rest for 15- 20 min. Keep in mind the flat and point may not get done at the same time. Total cooking time will be around 3.5 to 4 hours.
Cutting the Brisket:
After all this cooking, you want tender meat. The connective tissue should be broken down, but it's just as important to cut the brisket the right way. Cut across the grain of the meat as thinly as you can... around 1/4 of an inch (not thicker). This will be much easier on the brisket flat. With the point, you can give it a shot, but you will find it will likely pull apart. No big deal, it makes great shredded beef sandwiches. Or chop it up and add to some baked beans.
Preparing the Day Before:
Frankly, I prefer to prepare the brisket the day ahead of time, it makes the timing so much easier should your meat take longer or less time then expected.
After cooking, I refrigerate the flat and point in foil (uncut). Keep a generous amount of the juices from the roasting pan (refrigerate the juices seperatly).
Then to serve, remove the meat from the refrigerator, it will be easier to cut nice and thin (even the point). Place the slices, in a crock pot. Return any extra meat to the refrigerator (leftovers).
Remove the fat from the top of the juices and add a good bit of the roasting juices to the crock pot. You don't need to cover all the meat. It will take an hour or so to reheat. If you want to speed this up. Reheat the juices on the stove, then add to the crockpot with the meat. Flip the meat right before serving so all the meat has been in the juices. This also works well should you overcook the brisket a bit. The juices add a ton of flavor and can restore a bit of moisture should it get a little dry for your tastes.
Serve with BBQ sauce, as brisket sandwiches (plain old white bread works for me) or just as the meat with plenty of good sides.
Most importantly...Enjoy with family and friends.
Again, I usually cook for a large group so I end up getting about a 12-14 pound whole beef brisket from Sam's Club.
Prepping the Brisket:
Trim the thickest of the fat from the meat. You don't want to remove all the fat cap, but you don't want 1/2 inch thick chunks of fat to deal with after cooking.
A whole brisket has 2 muscles: the point & the flat. The flat is the thinner part that runs the length of a whole brisket. I prefer to separate these two pieces of meat to make the cooking time a bit more even. You have to separate them after cooking anyway since the grain of the 2 muscles run in different directions. The point lays on top of the flat. Lay the whole brisket fat side up and it should be pretty obvious where to start separating the muscles. Look at the thick end. You can usually start separating by hand then cut the connective tissue as you go.
If you are not comfortable cutting them apart, cook the brisket whole until the flat gets to the right temp. Then separate the point from the flat (it will be easy). Return the point to the oven and cook until finished.
The Rub:
I've had briskets with peppery rubs on them. I like them that way, but many I cook for don't. Plus since I am doing this in the oven, I'm a little careful of adding too much salt or spicy rubs that would work better if I was smoking the brisket. If I want spice, I get it from the BBQ sauce added at the end. That way everyone gets the level of heat they want.
The all purpose rub I use for beef, pork & chicken is Emeril's Essence. I get mine pre-made in the seasonings section at Sam's Club. Or use his recipe (from foodnetwork.com):
Emeril's Essence - Ingredients:
2 1/2 tablespoons paprika
2 tablespoons salt
2 tablespoons garlic powder
1 tablespoon black pepper
1 tablespoon onion powder
1 tablespoon cayenne pepper
1 tablespoon dried oregano
1 tablespoon dried thyme
Add a liberal amount of the rub to all sides of the brisket. It's a lot of meat, so don't be stingy. on the rub. Like it a bit sweeter rub, add a bit of brown sugar to the Essence.
Roasting the Brisket:
Set oven to 350.
Place the brisket in a roasting pan, fatty side up. I usually place a rack under mine to get the meat off the bottom of the pan, but it's probably not a big deal.
Cook uncovered for an hour.
Add 1 1/2 cups of beef stock and enough water to fill the bottom of the roasting pan about 1/2 an inch. Lower oven temp to 300. Cover the pan tightly with foil and roast for about 2 1/2 hours. Start checking the internal temp of the meat. Pull the brisket out when it reaches an internal temp of 185 degrees. Let it rest for 15- 20 min. Keep in mind the flat and point may not get done at the same time. Total cooking time will be around 3.5 to 4 hours.
Cutting the Brisket:
After all this cooking, you want tender meat. The connective tissue should be broken down, but it's just as important to cut the brisket the right way. Cut across the grain of the meat as thinly as you can... around 1/4 of an inch (not thicker). This will be much easier on the brisket flat. With the point, you can give it a shot, but you will find it will likely pull apart. No big deal, it makes great shredded beef sandwiches. Or chop it up and add to some baked beans.
Preparing the Day Before:
Frankly, I prefer to prepare the brisket the day ahead of time, it makes the timing so much easier should your meat take longer or less time then expected.
After cooking, I refrigerate the flat and point in foil (uncut). Keep a generous amount of the juices from the roasting pan (refrigerate the juices seperatly).
Then to serve, remove the meat from the refrigerator, it will be easier to cut nice and thin (even the point). Place the slices, in a crock pot. Return any extra meat to the refrigerator (leftovers).
Remove the fat from the top of the juices and add a good bit of the roasting juices to the crock pot. You don't need to cover all the meat. It will take an hour or so to reheat. If you want to speed this up. Reheat the juices on the stove, then add to the crockpot with the meat. Flip the meat right before serving so all the meat has been in the juices. This also works well should you overcook the brisket a bit. The juices add a ton of flavor and can restore a bit of moisture should it get a little dry for your tastes.
Serve with BBQ sauce, as brisket sandwiches (plain old white bread works for me) or just as the meat with plenty of good sides.
Most importantly...Enjoy with family and friends.
Cheap Medicine:
Rick's Anniversary
Rick was in trouble. He forgot his wedding anniversary. His wife was really angry.
She told him "Tomorrow morning, I expect to find a gift in the driveway that goes from 0 to 200 in less than 6 seconds AND IT BETTER BE THERE!!"
The next morning Rick got up early and left for work. When his wife woke up she looked out the window and sure enough there was a box, gift-wrapped in the middle of the driveway.
Confused, the wife put on her robe and ran out to the driveway, and brought the box back in the house.
She opened it and found a brand new bathroom scale. (Rick has been missing since Friday. Please pray for him.)
She told him "Tomorrow morning, I expect to find a gift in the driveway that goes from 0 to 200 in less than 6 seconds AND IT BETTER BE THERE!!"
The next morning Rick got up early and left for work. When his wife woke up she looked out the window and sure enough there was a box, gift-wrapped in the middle of the driveway.
Confused, the wife put on her robe and ran out to the driveway, and brought the box back in the house.
She opened it and found a brand new bathroom scale. (Rick has been missing since Friday. Please pray for him.)
Tuesday, January 11, 2011
AML:
Waiting for Nadir...
I've said that this chemo is a waiting game. In my case, as long as I can avoid infections when my blood counts are low, this trip through should be pretty uneventful. So right now I find myself waiting for nadir...
Nadir means the lowest point. In relation to my chemotherapy, it's the term given to the point at which my blood counts hit their lowest point. It generally should happen at about 10 days after my chemo (give or take).
So what is happening in my body right now? The chemotherapy drugs are going after my rapidly dividing cells. Since cancer itself is rapidly dividing, the point of the chemo is to kill every last cancer cell in my body. Other (healthy) rapidly dividing cells are getting caught in the crossfire like hair, skin, and digestive cells. Since I am dealing with Leukemia (cancer of the blood and bones), we're also talking about white blood cells, red blood cells and platelets.
While, I can live with out hair, I can't live without white blood cells, red blood cells or platelets. So nadir is a very important thing. As I get closer to nadir, my body is still unable to produce these cells. I lose the ability to fight infection (white blood cells), carry oxygen through my body (red blood cells) and for my blood to clot (platelets). If needed, I receive blood or platelets to get me through this period until my body starts producing these cells again.
My next milestone is nadir, which should be sometime in the middle of next week, until then... we wait and deal with whatever side effects may come up.
Nadir means the lowest point. In relation to my chemotherapy, it's the term given to the point at which my blood counts hit their lowest point. It generally should happen at about 10 days after my chemo (give or take).
So what is happening in my body right now? The chemotherapy drugs are going after my rapidly dividing cells. Since cancer itself is rapidly dividing, the point of the chemo is to kill every last cancer cell in my body. Other (healthy) rapidly dividing cells are getting caught in the crossfire like hair, skin, and digestive cells. Since I am dealing with Leukemia (cancer of the blood and bones), we're also talking about white blood cells, red blood cells and platelets.
While, I can live with out hair, I can't live without white blood cells, red blood cells or platelets. So nadir is a very important thing. As I get closer to nadir, my body is still unable to produce these cells. I lose the ability to fight infection (white blood cells), carry oxygen through my body (red blood cells) and for my blood to clot (platelets). If needed, I receive blood or platelets to get me through this period until my body starts producing these cells again.
My next milestone is nadir, which should be sometime in the middle of next week, until then... we wait and deal with whatever side effects may come up.
Monday, January 10, 2011
To My Wife...
As I settle in my hospital bed for what is becoming yet another in a string of lonely nights, my mind wanders to those I love. I am starting to believe that when we are separated from those we love, we are being provided the opportunity to see them in a new way.
With so much time to myself, I think back on 32 years and recall moments that have made me into the person I am. Even as the memories fade, these moments stand out. I find myself focusing on one moment more than any other; January 26th, 2002, when I married Andrea Frericks.
I met Andrea is college and for some inexplicable reason, she managed to put up with the selfish, self absorbed, stubborn, (fill in the blanks) person that I was. To this day I have no idea why. Especially as we go through this illness together, I am unsure how I managed to be so fortunate. My dad likes to remind me how lucky I am. Marrying up is something we have in common.
I mentioned marrying Andrea as a moment, but it wasn’t like flipping a switch. We were both young with plenty of growing up to do, but we’ve spent these 9 years since growing together. In so many ways, we are a perfect match, in so many ways we are not; but for all my shortcomings she has held on tightly… more for my good, than her’s.
She is so much stronger than she thinks she is.
I hope I’ve made her laugh more than cry. I hope I give her strength, because she is mine. I’ve taken her for granted; she takes me for who I am.
So, here I am with this opportunity. To my wife: I want to grow into one of those old couples, so into each other that we embarrass everyone else around us. I am not sure if we will be provided the time to grow old together, but at least we can try to embarrass everyone else. Sound like a plan?
There was a point not that long ago, that I would have felt too self-conscious to share such personal thoughts. One’s point of view changes when dealing with something like AML. If course priorities change, but I find myself more emotionally connected to what is going on around me. May I never again miss an opportunity to tell those around me how important they are. Why is it that we are often forced to realize these things?
Perhaps I am destined to emerge from this with some kind of strong insight about who I am and what I want…perhaps not. I have faith this is all playing out as it should. Whether our tests are illness, injury, relationships or our own stupidity, at least life is not a long boring road to nowhere.
With so much time to myself, I think back on 32 years and recall moments that have made me into the person I am. Even as the memories fade, these moments stand out. I find myself focusing on one moment more than any other; January 26th, 2002, when I married Andrea Frericks.
I met Andrea is college and for some inexplicable reason, she managed to put up with the selfish, self absorbed, stubborn, (fill in the blanks) person that I was. To this day I have no idea why. Especially as we go through this illness together, I am unsure how I managed to be so fortunate. My dad likes to remind me how lucky I am. Marrying up is something we have in common.
I mentioned marrying Andrea as a moment, but it wasn’t like flipping a switch. We were both young with plenty of growing up to do, but we’ve spent these 9 years since growing together. In so many ways, we are a perfect match, in so many ways we are not; but for all my shortcomings she has held on tightly… more for my good, than her’s.
She is so much stronger than she thinks she is.
I hope I’ve made her laugh more than cry. I hope I give her strength, because she is mine. I’ve taken her for granted; she takes me for who I am.
So, here I am with this opportunity. To my wife: I want to grow into one of those old couples, so into each other that we embarrass everyone else around us. I am not sure if we will be provided the time to grow old together, but at least we can try to embarrass everyone else. Sound like a plan?
There was a point not that long ago, that I would have felt too self-conscious to share such personal thoughts. One’s point of view changes when dealing with something like AML. If course priorities change, but I find myself more emotionally connected to what is going on around me. May I never again miss an opportunity to tell those around me how important they are. Why is it that we are often forced to realize these things?
Perhaps I am destined to emerge from this with some kind of strong insight about who I am and what I want…perhaps not. I have faith this is all playing out as it should. Whether our tests are illness, injury, relationships or our own stupidity, at least life is not a long boring road to nowhere.
AML:
A Day in the Life...My Treatment
Some days are busier then then most. But for the most part, once the chemo is over, there is a lot of time just waiting for my immune system fall, then to recover enough so it is safe for me to go home. At the end of each treatment, I get bone a marrow biopsy to see if Leukemia is detected.
All IV meds and fluids are administered through my PICC line. I had a Hickman Line first, but since it got infected, we've stuck with the PICC line. The PICC line gets removed each time I go home.
5:30 am:
Daily blood work. (some nurses let me sleep until 7:00)
7:30 am:
Order breakfast. The food is pretty good here.
After breakfast my blood tests are back. I have them written on a white board in my room so I can can track as they go down and then back up. We monitor white blood count (WBC), Hemoglobin\Red Blood Count (RBC), Platelets and ANC. ANC is your ability to fight infections on your own. When ANC falls below 500, your immune system is considered compromised. In general, about 7 days after the chemo my ANC falls to 0 and stays there for about a week. A dangerous time to get infections.
Morning (Chemo):
Prepping for chemo. Premeds 30 min before chemo: Decadron 50ml (Steroid), Anti-nausea meds. I have had no issues with nausea since the first round of treatments.
Chemo: When I was going through Induction therapy (first 2 rounds), my chemo consisted of an injection of Daunorubicin (216mg) each morning for 3 days. At the same time, I was given a continuous dose of cytarabine over 7 days.
I am now going through consolidation therapy. 7100mg of cytarabine given over 3 hours. I do this 2 times in a day and then no chemo the next day. In effect I am getting chemo every other day for 5 days.
Hemoglobin or Platelet transfusions (when needed):
If my Red blood count falls below 7.5, I get hemoglobin transfusions (2 units).
If my platelets fall below 20,000, I get platelets.
Other Meds\Tests:
I was on a bunch of meds my first time through because I was so sick: Prilosec for heartburn, nutritional supplements to correct potassium and other deficiencies. Mouth wash to prevent mouth infections. All kinds of oral and IV antibiotics. I was also getting CT scans and other tests several times during my first round of chemo in order to identify the source of my infections\fevers. I had a terrible nose bleed that would not stop due to my low platelet levels.. We had to have it cauterized to stop the bleeding. Fortunately I have been able to avoid most of these complications since the first round of chemo.
Constant IV fluids (resulting to frequent trips to the restroom, plus they have to monitor my fluid input and output)
Eye drops (more steroids) every 6 hours to prevent eye infections.
Broad spectrum antibiotics if I spike a fever.
VFEND antifungal to treat the Aspergillus I got during my first treatment (was on this from 10/11-12/21/2010) 2 pills a day @ $50 a pill. The Aspergillus caused nodules on my liver and lungs.
Passing the Time
Technology is my friend. There is only so much TV you can watch. Sanford has wireless Internet which provides a bunch of options. I get a lot of comments from the staff about my setup. I occupy my time with:
Here are a few pics. My laptop\PC\Xbox setup along with my TV, whiteboard and most important...family pics.
All IV meds and fluids are administered through my PICC line. I had a Hickman Line first, but since it got infected, we've stuck with the PICC line. The PICC line gets removed each time I go home.
5:30 am:
Daily blood work. (some nurses let me sleep until 7:00)
7:30 am:
Order breakfast. The food is pretty good here.
After breakfast my blood tests are back. I have them written on a white board in my room so I can can track as they go down and then back up. We monitor white blood count (WBC), Hemoglobin\Red Blood Count (RBC), Platelets and ANC. ANC is your ability to fight infections on your own. When ANC falls below 500, your immune system is considered compromised. In general, about 7 days after the chemo my ANC falls to 0 and stays there for about a week. A dangerous time to get infections.
Morning (Chemo):
Prepping for chemo. Premeds 30 min before chemo: Decadron 50ml (Steroid), Anti-nausea meds. I have had no issues with nausea since the first round of treatments.
Chemo: When I was going through Induction therapy (first 2 rounds), my chemo consisted of an injection of Daunorubicin (216mg) each morning for 3 days. At the same time, I was given a continuous dose of cytarabine over 7 days.
I am now going through consolidation therapy. 7100mg of cytarabine given over 3 hours. I do this 2 times in a day and then no chemo the next day. In effect I am getting chemo every other day for 5 days.
Hemoglobin or Platelet transfusions (when needed):
If my Red blood count falls below 7.5, I get hemoglobin transfusions (2 units).
If my platelets fall below 20,000, I get platelets.
Other Meds\Tests:
I was on a bunch of meds my first time through because I was so sick: Prilosec for heartburn, nutritional supplements to correct potassium and other deficiencies. Mouth wash to prevent mouth infections. All kinds of oral and IV antibiotics. I was also getting CT scans and other tests several times during my first round of chemo in order to identify the source of my infections\fevers. I had a terrible nose bleed that would not stop due to my low platelet levels.. We had to have it cauterized to stop the bleeding. Fortunately I have been able to avoid most of these complications since the first round of chemo.
Constant IV fluids (resulting to frequent trips to the restroom, plus they have to monitor my fluid input and output)
Eye drops (more steroids) every 6 hours to prevent eye infections.
Broad spectrum antibiotics if I spike a fever.
VFEND antifungal to treat the Aspergillus I got during my first treatment (was on this from 10/11-12/21/2010) 2 pills a day @ $50 a pill. The Aspergillus caused nodules on my liver and lungs.
Passing the Time
Technology is my friend. There is only so much TV you can watch. Sanford has wireless Internet which provides a bunch of options. I get a lot of comments from the staff about my setup. I occupy my time with:
- Eating: I can pretty much order food and snacks when I want. Favorites: grilled salmon, Lasagna, Pork Tenderloin. Dessert: mango smoothies, milk shakes, french silk pie, apple pie. A decent variety and pretty good all around. But even good hospital food gets repeditive. I occasionally order a Godfathers pizza, Arby's or Chinease, if I need a bit of the outside life.
- Emails: For those family & friends not on the Facebook bandwagon
- Facebook: Posting status updates and monitoring friends
- Blogging: I started this during my 3rd round and am amazed by how therapeutic and time consuming it is. I've always enjoyed writing. I know others use CaringBridge to do the same thing. I wanted my blog to be more then my AML so didn't go that route.
- XBOX: Mostly playing XBOX Live with my coworkers. It's been great to be able to keep in touch with them this way. Call of Duty: Black Ops and Rock Band 3 are among may favorites right now.
- Reading: Cooking topics, Terry Brooks books
- Amazon Kindle ebooks: I got my wife an Amazon Kindle for Christmas (she loves it). With the Amazon Kindle PC reader app, I can read all the books on my laptop for no extra cost. Luckily we like similar books. Percy Jackson Series, Sookie Stackhouse Journals, I will probably break down and read the Twilight saga as well.
- Movies: Sanford has Lodgenet's on demand movies. They don;t change often but they are free. The network blocks streaming video, so Andrea brings in DVDs upon request.
- TV Shows: Chuck, Human Target, Glee, Family Guy, NCIS, NFL
My Room:
It is a special room for people with compromised immune systems. My own air\ventilation. When my ANC falls below 500, I don't venture out much and people wear masks\gowns and scrub up when the come in the room.Here are a few pics. My laptop\PC\Xbox setup along with my TV, whiteboard and most important...family pics.
Sunday, January 9, 2011
Medicine for the Soul:
Oven Braised Baby-Back Ribs
I love to cook, here is my first post related to cooking.
I made these recently (for New Years Eve) and they turned out awesome. The oven braising method comes from Alton Brown (Food Network), but I tweaked\simplified his recipe. I will make all my ribs like this from now on. In the summer I would finish these on the grill, but in the dead of a South Dakota winter, I finished under the broiler.
The Meat:
First, start with good meaty baby back ribs. I get mine from Sam's Club. Always have had good luck with the meat I get there. I cooked up 8 pounds of ribs. 8 pounds may seem like a lot, but these reheat really well (if you are lucky enough to have any left).
The Rub:
Assuming each slab of ribs is around 2 pounds. Prepare the rub based on the amount of meat you have. For each 2 pound slab:
- 3 tablespoons of light brown sugar
- 1/2 tablespoon of kosher salt
- 1/2 tablespoon of chili powder
- 1/2 tablespoon of Old Bay seasoning (I love this stuff)
- 1/4 teaspoon of black pepper
- 1/4 teaspoon of dried thyme
- 1/4 teaspoon of onion powder
Apply canola oil (or other vegetable oil) to the meat. Add rub to all sides. Then refrigerate overnight. I actually let mine go for 24 hours. Honestly not sure if it makes a huge difference. I think the extra time lets the sweetness from the sugar get through the meat a bit more.
I imagine any rub would work, but I love the Old Bay in this one. Add cayenne if you want heat, or wait until the last step and just get your heat from your favorite BBQ sauce. I like waiting until the last step since those I cook for like different degrees of heat.
Braising Liquid:
For each 2 pound slab (just increase the liquid a bit if you slabs are bigger).
- 1/4 cup of beer (I used Bud Light, because I didn't want to beer to overpower)
- 1/4 cup of Chicken Broth or Stock
- 1 tablespoon of Worcestershire sauce
- 1/2 tablespoon honey
- 1 clove garlic (can use garlic powder if that's what you've got)
The measurements here are not that touchy and the first 2 ingredients are the most important. It's all about slow cooking these ribs in a small about of liquid (braising).
Braising the Ribs:
This is the method I go from Alton Brown. You will cook each slab individually in aluminum foil with the braising liquid.
- Set oven to 275.
- Lay slab of ribs on heavy duty foil. Bone side up. This is important so the bones don't poke holes in the bottom of the foil. You're going to pour the braising liquid in the foil packet so no seams in the bottom. Fold the foil loosely over the top of the ribs and crimp tightly (don't want steam to escape). Roll up one of the sides. Make sure you have enough foil so these side seams end up rolled even with the top seam. You want to eventually form a leak\steam proof packet. Take your time, if you poke a hole, start the packet over. Remember to leave one side open. for the next step.
- Pour braising liquid into the open end of the packet and then seal tightly.
- Place the slabs in a single layer on a sheet pan(s), in case they leak.
- Place in oven. After about 2 1/2 hours check one packet. Unroll one of the sides of the packet, stick a fork in the ribs and test the meat. When done...On the meaty side you'll see the meat pull away easily. don't forget to test between the bones, that part may not be done yet. Mine took about 4 hours to cook. Since we are braising, it's unlikely you'll over cook them. You do want the slab to stay together when you take it out of the packet. You only need to check the same packet for doneness; once it's done, they all will be. You could go as far as cutting a rib off your test packet to make sure you are happy with the doneness.
- Drain the braising liquid. (Poke a hole through the packet and let the liquid drain in the sink)
Note: If you want to prepare ahead, you could stop right here, cool and refrigerate the ribs overnight (in their foil) and finish the next steps before serving.
Finishing the Ribs:
Now you have tender meat that has good base flavor, the final step of broiling or grilling is the key to getting big flavor from these ribs.
- Set your oven to broil and set the rack on the 2nd position from the top.
- Coat the ribs with your favorite BBQ sauce. (I use Famous Dave's Rich and Sassy.)
- Broil the ribs to caramelize the sauce and even add a little char if you want. Keep tabs on them. You don't to overdo it after all the work to get to this point. I broiled for about 10 minutes, but mine went in the broiler cold from the refrigerator.
I cut the ribs in 2 rib portions and put in a crock pot to keep warm (if prepping a little ahead of time). Otherwise serve immediately.
Enjoy. If you try these, let me know how it goes.
Saturday, January 8, 2011
Layla's 2nd Birthday
Layla turned 2 today. We did a small celebration at the hospital, since I am in the middle of my AML treatment. We'll do a bigger celebration when I get out. With Andrea on maternity leave it's been great that she can get the kids to see me so often and organize things like this.
Kids under 12 are not allowed in my wing, so we have to meet in a family room right outside my area.
We had DQ ice cream cake and brought cake to share with the staff and nurses. So much for post holiday diets (the nurse's, not mine).
Kids under 12 are not allowed in my wing, so we have to meet in a family room right outside my area.
We had DQ ice cream cake and brought cake to share with the staff and nurses. So much for post holiday diets (the nurse's, not mine).
Sanford's Sons and Daughters
This post is about the giving nature of my caregivers @ Sanford Hospital.
Having spent almost 2 months in Sanford Hospital prior to Christmas (2010). I have gotten to know my nurses and staff of the 6000 level. They would get to see pictures of my family and occasionally get to see them when the kids came to visit me.
The staff asked if they could adopt our family for Christmas. They sent so many gifts for our kids. It was truly overwhelming. I've included a few pictures. Everything you see under the tree is from the Sanford staff (6000 level).
The highlights where the new outfits, slippers, Zhu Zhu pets and their imagination box full of dress up cloths. I am so grateful of the care and new friends I have made here.
Having spent almost 2 months in Sanford Hospital prior to Christmas (2010). I have gotten to know my nurses and staff of the 6000 level. They would get to see pictures of my family and occasionally get to see them when the kids came to visit me.
The staff asked if they could adopt our family for Christmas. They sent so many gifts for our kids. It was truly overwhelming. I've included a few pictures. Everything you see under the tree is from the Sanford staff (6000 level).
The highlights where the new outfits, slippers, Zhu Zhu pets and their imagination box full of dress up cloths. I am so grateful of the care and new friends I have made here.
Friday, January 7, 2011
The 2010 Holiday Letter...Never Sent
We ran out of time to mail our holiday letter before leaving for 2 weeks at my parent's. Figured I'd post it here.
Dear family and friends,
This year was full of adventures for our family. A new baby, cancer and Disney all in one year. (Not in that order).
Lets start with the biggest adventure first. On Labor Day, Jon woke with terrible back and hip pain. Usually one to let things run their course, this was different. We went through a series of different kinds of doctors before a diagnosis. On Sept. 23, Jon learned he had Acute Myeloid Leukemia and immediately started chemo at Sanford Hospital in Sioux Falls.
AML is aggressive and treatment is equally so. Jon has had two chemo treatments. The first was physically hard on him, but after four weeks and losing 40 lbs, he was able to go home. The second treatment put him in the hospital over Thanksgiving, but was easier with the major side effect being boredom. AML is tough cancer to be rid of, but for now, the recent tests have him in remission. More treatments are needed so it does not come back, but it is a blessing that Jon has responded so well.
Andrea still works at Citibank and Jon at Daktronics. With Andrea being on maternity leave and Jon in between treatments, we have really been able to focus on spending time together as a family.
Alivia finished her first year of school at Tri-Valley in May. She is a good student and enjoys it very much. She has straight A's through her first half of 1st grade. Liv started gymnastics this year and quickly moved from the beginners to the advanced class. She is, however, asking to swith to swimming lessons.
Nevaeh and Layla attend Citibank Daycare. The girls love it, as it provide many activities for them. Vaeh loves singing, the tumble bus and bragging to her older sister about her field trips. With Layla we have gone from walking to talking this year. She enjoys her time outside and loves it when Mom and\or Dad join her at school for activities.
Jonah, was born in November. Jon was between hospital stays and was able to be there. Having a boy in a house full of girls is sure to be an adventure of its own, but he has been a very good baby.
You know it been quite a year when Disney falls this low on the list of adventures. Liv and Vaeh saved money for two years to help pay for the trip to Disney World. We were so happy Andrea's mother, Marsha, was able to join us. There are too many memories to fit in this letter, but needless to say, we had a great time.
In a year of memories, one thing stands out. We are truly blessed by all our family and friends that have helped us during Jon's treatment. All the prayers have done wonders and Jon was able to focus on healing knowing his family was taken care of. Our family will forever remember and be thankful for all that was done for us.
Here's looking forward to more adventures, strengthened by what lies behind us,
Jon, Andrea, Alivia, Nevaeh, Layla & Jonah
------------------------------------------------------------------------------------------------
Dear family and friends,
This year was full of adventures for our family. A new baby, cancer and Disney all in one year. (Not in that order).
Lets start with the biggest adventure first. On Labor Day, Jon woke with terrible back and hip pain. Usually one to let things run their course, this was different. We went through a series of different kinds of doctors before a diagnosis. On Sept. 23, Jon learned he had Acute Myeloid Leukemia and immediately started chemo at Sanford Hospital in Sioux Falls.
AML is aggressive and treatment is equally so. Jon has had two chemo treatments. The first was physically hard on him, but after four weeks and losing 40 lbs, he was able to go home. The second treatment put him in the hospital over Thanksgiving, but was easier with the major side effect being boredom. AML is tough cancer to be rid of, but for now, the recent tests have him in remission. More treatments are needed so it does not come back, but it is a blessing that Jon has responded so well.
Andrea still works at Citibank and Jon at Daktronics. With Andrea being on maternity leave and Jon in between treatments, we have really been able to focus on spending time together as a family.
Alivia finished her first year of school at Tri-Valley in May. She is a good student and enjoys it very much. She has straight A's through her first half of 1st grade. Liv started gymnastics this year and quickly moved from the beginners to the advanced class. She is, however, asking to swith to swimming lessons.
Nevaeh and Layla attend Citibank Daycare. The girls love it, as it provide many activities for them. Vaeh loves singing, the tumble bus and bragging to her older sister about her field trips. With Layla we have gone from walking to talking this year. She enjoys her time outside and loves it when Mom and\or Dad join her at school for activities.
Jonah, was born in November. Jon was between hospital stays and was able to be there. Having a boy in a house full of girls is sure to be an adventure of its own, but he has been a very good baby.
You know it been quite a year when Disney falls this low on the list of adventures. Liv and Vaeh saved money for two years to help pay for the trip to Disney World. We were so happy Andrea's mother, Marsha, was able to join us. There are too many memories to fit in this letter, but needless to say, we had a great time.
In a year of memories, one thing stands out. We are truly blessed by all our family and friends that have helped us during Jon's treatment. All the prayers have done wonders and Jon was able to focus on healing knowing his family was taken care of. Our family will forever remember and be thankful for all that was done for us.
Here's looking forward to more adventures, strengthened by what lies behind us,
Jon, Andrea, Alivia, Nevaeh, Layla & Jonah
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