Recap: AML relapsed... refereed to Mayo Clinic in Rochester Minnesota.
So Andy & I took off Monday night for Rochester. The drive from Sioux Fall is an easy 4 hour drive. It was uneventful, until we exited I-90 and headed into Rochester, we saw a SUV catch the soft sholder and roll over in the opposite ditch. We were in the north bound lane, the other vehicle was in the southbound.
We made a quick call to 911 and I sprinted (more of a lumber) across the 4 lane highway to see if there was something to be done. The SUV was on its side so I could not open any of the doors. I was able to open the hatchback and talk to the driver. She was fine (though she was not wearing a seatbelt) and assited her out the back. Except for a pretty nasty bruse on here elbow (The whole thing was purple) she seemed fine.
Lucky for us, it was still about 40 degrees outside. Police officers arrived in about 5 min and with all under control, Andy & I finished our trip to Rochester. Late to bed... and then up early for a 7:00 appointment.
The Mayo Clinic was a bit different then I expected. I kind of thought it would be a bit more of a sprawling campus. Instead it is a series of tall buildins in downtown Rochester. We met with our Nurse Practitioner. She talked about how the bone marrow transplant (BMT) works and what to expect. We both liked her a lot. Most of which we were already aware of. Then we met with the doctor. He told much of the same story and added some info. They were both very patient and took their time with us. I feel quite comfortable with them. I can't place my doctor's accent though. Hungarian maybe.
They set me up for blood work. They are rerunning my HLA typing which is the first step in locating a bone Marrow donor. (my sister is not a match). I am told there is about a 50% chance they will find a perfect donor in the registry, about an 80% chance that they will find a 9/10 donor. This means somone that is a 90% match. The doctor will not do the transplant if the match is any lower then that.
They also ran my blood counts which are still normal. No indication of anything in my blood work. I had a CT and a PET scan. both are intended to find out if I have anything else going on right now. We want no suprises as I get closer to having the bone marrow transplant.
So with all tests done... we came back a day early.
The next step is to get me into remission again. So next week I will go back into Sanford hospital. I will be able to get my chemo close to home. At the same time, they will start looking for a match. It could take several months to locate and line up the donor. So, once I am in remission and a donor is found, I'll have the transplant at Mayo. I'll write more about that at a later time.
For now, I feel fine even though I have the kids' headcold. Dr. appointment in Sioux Falls tomorrow and chemo next week. We'll enjoy the weekend and take it from there.
Some notes about Rochester (for future reference):
- We stayed at the TownPlace Suites. It was a great location and nice facility. Great rates. Nice pool for the kids if they come down somed time.
- Pi Wood-fired Pizza... great place for a slice
- Noodles & Company... great place for a cheap lunch. Bangkok Curry = yum
- 300 First... great place for a upscale meal. Prime rib was best I ever had ... stay away from the crab cakes.
Thursday, January 12, 2012
Wednesday, January 4, 2012
AML: Relapse
Well, odds were that this was going to happen. My AML has relapsed. I was feeling so good and I hoped that the chemo was going to be enough. Turns out it was only halftime... Going to need to make some adjustments to the game plan.
So, next week I am off to Mayo Clinic in Rochester to get tests as an outpatient. I have to be there Tuesday morning and they have not told me when I get to leave for sure. They said they don't keep people there on weekends so I am planning on Tuesday-Friday.
I don't have a whole lot of info right now. But I think one of the main things they are going to look at is if they are going to have me get stem cells from a donor, or if they actually will use my own stem cells. Recovery is actually faster if they are my cells.
I guess I'll note that today is the first day I really don't feel myself. I don't feel bad, but over the last year I have become quite attuned to my body. I can tell I am a little run down, but more significatly, my lymph nodes are quite swolen. Hard as a rock even. But the doctors haven't really communciated any urgency here. The Mayo referral isn't happening until the January 10th. So basically 2 weeks after my bone marrow biopsy & last blood work.
For those of you that have started the praying, it seems that one of mine has already been answered.
Since learning that much of this will happen in Rochester, I had been stressing about the added costs of things not directly related to my health insurance. In fact, I was just talking to a coworker (Nancy) today about these expences and the cost of lodging for Andy(& kids?) when they visit. With my other treatments occuring in Sioux Falls, we did not have to worry about travel or lodging costs for myself or my family.
So... Today I get home and have a message from Vickie (my new case manager from my health insurace)... Now, I need to say again that I have had a lot of great care from doctors and nurses through this whole ordeal... but this ten minute conversation with my insurace case manager (of all people) has provided me with so much needed information, comfort and assurance about my upcoming treamtent that I feel a huge weight has been lifted. As icing on the cake, she tells me of this "hidden" $8000 benfit that will cover food, gas and lodging for myself and a caregiver during this process.
Seems like a small prayer to have answered... but it's the one I needed now. So my friends.. keep those prayers coming. I feel every one of them.
So, next week I am off to Mayo Clinic in Rochester to get tests as an outpatient. I have to be there Tuesday morning and they have not told me when I get to leave for sure. They said they don't keep people there on weekends so I am planning on Tuesday-Friday.
I don't have a whole lot of info right now. But I think one of the main things they are going to look at is if they are going to have me get stem cells from a donor, or if they actually will use my own stem cells. Recovery is actually faster if they are my cells.
I guess I'll note that today is the first day I really don't feel myself. I don't feel bad, but over the last year I have become quite attuned to my body. I can tell I am a little run down, but more significatly, my lymph nodes are quite swolen. Hard as a rock even. But the doctors haven't really communciated any urgency here. The Mayo referral isn't happening until the January 10th. So basically 2 weeks after my bone marrow biopsy & last blood work.
For those of you that have started the praying, it seems that one of mine has already been answered.
Since learning that much of this will happen in Rochester, I had been stressing about the added costs of things not directly related to my health insurance. In fact, I was just talking to a coworker (Nancy) today about these expences and the cost of lodging for Andy(& kids?) when they visit. With my other treatments occuring in Sioux Falls, we did not have to worry about travel or lodging costs for myself or my family.
So... Today I get home and have a message from Vickie (my new case manager from my health insurace)... Now, I need to say again that I have had a lot of great care from doctors and nurses through this whole ordeal... but this ten minute conversation with my insurace case manager (of all people) has provided me with so much needed information, comfort and assurance about my upcoming treamtent that I feel a huge weight has been lifted. As icing on the cake, she tells me of this "hidden" $8000 benfit that will cover food, gas and lodging for myself and a caregiver during this process.
Seems like a small prayer to have answered... but it's the one I needed now. So my friends.. keep those prayers coming. I feel every one of them.
Saturday, December 31, 2011
Catching Up: Life Outside the Hospital
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.
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.
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.
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