Been a while since I have posted anything. Nothing new to report ECD wise. Mayo is wanting me to come back up there July 2nd which will need to be rescheduled. Have in the back of my mind getting a second either at John Hopkins or MD Anderson but to be honest I don't really want to go through all the testing again and I can't really afford it.
Recently I found out that I will need to have another hernia surgery this summer, my third one. I know what to expect but not looking forward to it.
I Peter 4:12-13 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ's sufferings, that when His glory is revealed, you may also be glad with exceeding joy.
Wednesday, May 21, 2008
Wednesday, April 16, 2008
Dakota Seeker M
I guess since I am the only one posting at this time. I will post something that is near and dear to my heart which is not related to my physical health.
This morning I had to say goodbye to a very good friend of nearly 11 years. My buddy Dakota Seeker. I could not have asked for a better friend, dog. He was so smart, quick with love and attention, slow to anger, always excited to see you, made fast friends with any a human or animal, protector.
This morning I had to say goodbye to a very good friend of nearly 11 years. My buddy Dakota Seeker. I could not have asked for a better friend, dog. He was so smart, quick with love and attention, slow to anger, always excited to see you, made fast friends with any a human or animal, protector.
A few of my fond memories are:
-Training with him on bird wing. I tracked the wing all over the back yard without him seeing me, then hid the wing in the gutter 7' up on the garage. He came out followed the exact path of the wing on the ground and went & stood under the gutter looking up.
-Him running through water at his shoulder height, he looked like a deer bounding. Even though he wasn't a water dog he loved to swim and play in it.
-Dog Run back home. In fear watching as he lept across a 7' wide creek. It was an amazing thing to see.
-In the last few months he figured out where the best place was to get sick - on the tile floor. Each and every time he would hide from me because he thought he might be in trouble, and then he would wait for me to tell him that he was ok.
Sooo many memories, too many to post.
These past few months he had been battling intestinal cancer. Doctors in November (same month I got diagnosed with ECD)gave him less then a month to live. But not him. He faught. He still had too much love to give out freely and he continued to pour it out for 5 more months. In the end I, the person he always looked to for comfort had to say goodbye. He went peacefully and quietly in my hands as I told him like I always have, "your ok, your ok, your ok".....
In peace, eat, sleep, play, make new friends. Can't wait to see you again my friend. "Mom" says to share a few tennis balls with some of the other dogs!!
Your buddy,
Doug M
-Training with him on bird wing. I tracked the wing all over the back yard without him seeing me, then hid the wing in the gutter 7' up on the garage. He came out followed the exact path of the wing on the ground and went & stood under the gutter looking up.
-Him running through water at his shoulder height, he looked like a deer bounding. Even though he wasn't a water dog he loved to swim and play in it.
-Dog Run back home. In fear watching as he lept across a 7' wide creek. It was an amazing thing to see.
-In the last few months he figured out where the best place was to get sick - on the tile floor. Each and every time he would hide from me because he thought he might be in trouble, and then he would wait for me to tell him that he was ok.
Sooo many memories, too many to post.
These past few months he had been battling intestinal cancer. Doctors in November (same month I got diagnosed with ECD)gave him less then a month to live. But not him. He faught. He still had too much love to give out freely and he continued to pour it out for 5 more months. In the end I, the person he always looked to for comfort had to say goodbye. He went peacefully and quietly in my hands as I told him like I always have, "your ok, your ok, your ok".....
In peace, eat, sleep, play, make new friends. Can't wait to see you again my friend. "Mom" says to share a few tennis balls with some of the other dogs!!
Your buddy,
Doug M
Saturday, April 5, 2008
A 2nd
So the thought is being tossed around about getting a 2nd on the disease diagnosis and the treatment. Not that Dr. Luthra is not capable but that this is very important and we need to know that we are getting the best possible. This disease is so rare, so the more information, the better! After making many calls to doctors who have treated ECD I have pretty much narrowed the list down to either MD Anderson in Houston or Dr. Arceci at Johns Hopkins both as it sounds have treated around 20 patients (according to their offices) with ECD, which is far more then anyone else that I have found anyway, and in speaking to other doctors these two names were continually brought up.
We have not committed to either as of yet. I still need to check on insurance etc. If anyone has any other suggestions on doctors please feel free to post a comment. What I have been basically looking for is how many patients they have treated, their name, phone number, location, misc past treatment info.
Warm days ahead!
We have not committed to either as of yet. I still need to check on insurance etc. If anyone has any other suggestions on doctors please feel free to post a comment. What I have been basically looking for is how many patients they have treated, their name, phone number, location, misc past treatment info.
Warm days ahead!
Saturday, March 22, 2008
Home
Arrived DIA about 11:45pm lastnight. Flight was delayed because the flight crew for our plane was delayed coming in from Detroit. Long day.
Ended up meeting with Dr. Torres 1:15pm or it was 2:30pm before he got in the room, so technically 2:30pm. He recommended that I see a local ENT about my nasal issues. He was going to have a copy of the most recent MRI forwarded for me to give to the local ENT. He did note that the radiolgist commented that the MRI of the brain, sinus area did not look like anything had changed. He called Dr. Luthra while I was in the room, and Dr. Luthra would like to see me back in 3-4 months, as well as doubling up on the tomoxiphan. I was told that the side effects should not be double. So double up on the drugs and lose some LB's!!!
So that's where we are now.
I want to thank everyone for praying for me, and Heather & I. All the prayers and kind words have been overwhelming. Do me a favor send some of my prayers toward Andrew Demey. Some of you might not know him but that's ok; you don't have to know someone to pray for them. I will tell you however, he and his family are simply the best. We want to get this great kid out of the hospital and moving forward to a complete recovery. (Note his condition in previous posting.) So if you would, please pray for him.
Happy Easter!
Ended up meeting with Dr. Torres 1:15pm or it was 2:30pm before he got in the room, so technically 2:30pm. He recommended that I see a local ENT about my nasal issues. He was going to have a copy of the most recent MRI forwarded for me to give to the local ENT. He did note that the radiolgist commented that the MRI of the brain, sinus area did not look like anything had changed. He called Dr. Luthra while I was in the room, and Dr. Luthra would like to see me back in 3-4 months, as well as doubling up on the tomoxiphan. I was told that the side effects should not be double. So double up on the drugs and lose some LB's!!!
So that's where we are now.
I want to thank everyone for praying for me, and Heather & I. All the prayers and kind words have been overwhelming. Do me a favor send some of my prayers toward Andrew Demey. Some of you might not know him but that's ok; you don't have to know someone to pray for them. I will tell you however, he and his family are simply the best. We want to get this great kid out of the hospital and moving forward to a complete recovery. (Note his condition in previous posting.) So if you would, please pray for him.
Happy Easter!
Friday, March 21, 2008
Snow
It's snowing in Rochester today! There was talk in the tunnels of 6-8" overnight and today. Right now it seems to have stopped and I don't think there is more then 4". Hard to tell, I have not been outside but once in 2 days and that was to walk 1/2 a block. Yes, I was lost underground.
This morning brought an early morning MRI of the brain and sinus area. I explained again to the nurses that I can't have gadolinium as a contrast because of the kidneys. They went ahead and did an IV waiting on the radiologist to arrive to see what to do. With the IV ready they whisked me away to a changing room. There are so many advances in the medical world these days one of which I found in the changing room of all places. They have these cool new gowns probably developed for dudes who are not used to tying behind their back. The gown has a double sleeve on one side so you can put the front on and wrap the extra sleeve behind across your back and onto the opposite arm. No tying! Ok maybe this has been around for a while. My first time using them and needless to say I was really happy to not have my rear hanging out for the world to see.
MRI was interesting. Was the first head MRI I've had since the last head MRI where I freaked out and had to squeeze the button. Started to panic a bit again but just worked on my breathing and counting the minutes of each scan so I knew how much longer I had. Being in isn't so bad but when you throw in the banging of the MRI it can drive one crazy, as I explained to Heather. She replied, honey you could get a job as a MRI sound effects person. She is so wise:-) Love you honey! :-) Anyway, pretty soon the nurse says only three more scans to do. Time for the game face, you can do this Doug, offer it up, offer it up. 2 min, one down, 7 min, two down, 4 min 3 down, "ok we have 1 more 5 min one" I replied, "THAT WAS 3!" Needless to say I didn't get out of the 4th (extra) one! So they pulled me out waiting on what the radiologist said about the contrast. Praise God she said they didn't want to give me the contrast and risk problems. So I was done!
Next appointment was 10am ENT doctor. I showed up to find out that it was 10am Monday. Ouch. I had told Dr. Torres I didn't intend on staying over Easter weekend. Apparently the message didn't get passed on to the scheduling nurse. So they are still working on ironing that out. If I have to I guess I'll just leave without seeing an ENT here.
Gotta pack and get ready for hopefully final appointment with Dr. Torres.
This morning brought an early morning MRI of the brain and sinus area. I explained again to the nurses that I can't have gadolinium as a contrast because of the kidneys. They went ahead and did an IV waiting on the radiologist to arrive to see what to do. With the IV ready they whisked me away to a changing room. There are so many advances in the medical world these days one of which I found in the changing room of all places. They have these cool new gowns probably developed for dudes who are not used to tying behind their back. The gown has a double sleeve on one side so you can put the front on and wrap the extra sleeve behind across your back and onto the opposite arm. No tying! Ok maybe this has been around for a while. My first time using them and needless to say I was really happy to not have my rear hanging out for the world to see.
MRI was interesting. Was the first head MRI I've had since the last head MRI where I freaked out and had to squeeze the button. Started to panic a bit again but just worked on my breathing and counting the minutes of each scan so I knew how much longer I had. Being in isn't so bad but when you throw in the banging of the MRI it can drive one crazy, as I explained to Heather. She replied, honey you could get a job as a MRI sound effects person. She is so wise:-) Love you honey! :-) Anyway, pretty soon the nurse says only three more scans to do. Time for the game face, you can do this Doug, offer it up, offer it up. 2 min, one down, 7 min, two down, 4 min 3 down, "ok we have 1 more 5 min one" I replied, "THAT WAS 3!" Needless to say I didn't get out of the 4th (extra) one! So they pulled me out waiting on what the radiologist said about the contrast. Praise God she said they didn't want to give me the contrast and risk problems. So I was done!
Next appointment was 10am ENT doctor. I showed up to find out that it was 10am Monday. Ouch. I had told Dr. Torres I didn't intend on staying over Easter weekend. Apparently the message didn't get passed on to the scheduling nurse. So they are still working on ironing that out. If I have to I guess I'll just leave without seeing an ENT here.
Gotta pack and get ready for hopefully final appointment with Dr. Torres.
Thursday, March 20, 2008
Results Are In
Met with the doctors this afternoon. Basically Dr. Torres said that all my blood work came back normal for me. The radiologist read the CT scan and commented that it was hard to tell if there was a change because this CT I had with contrast, where the last one I did not. So they are hard to compare, however he did say that it appeared that the right kidney might have some decrease in scar tissue. Dr. Luthera felt the same way. Between the two doctors they feel comfortable allowing me to stay on Tomoxiphan for 3-6 months. At that point they are asking Heather and I to make a commitment to going on Cytoxan.
We asked Dr. Luthera about the Bone Marrow transplant idea and he said that the problem was what drug to use to totally kill off the bad cells? It would be a big risk with unsure results.
As Dr. Luthra explained there is so little known about ECD, including treatment, how it progresses etc. He felt we could track the kidneys and other bodily organs with ease because they are easy to CT or MRI. His concern was the long bones of the legs and other areas such as my left wrist and my elbows. Basically the histiocytes cells that are out of control in my body set up shop inside the bones and basically replace the marrow tissue with scar tissue. This means the biggest problem with the condition is killing off my cells. Bones produce cells, red blood cells (o2 carrying cells), white blood cells etc. So if the ECD was to take over the bones I could run the risk of sickness, lack of O2 cells, and such, which is why he is concerned about the bones and doesn't want us to wait too long to go on Cytoxan, as he knows this will help with the ECD in the bones. It's not that there is a major problem there right now, but there is no accurate way to track changes in the bones, so we are gambling in a sense that the condition will not take over the bone marrow.
I explained that we are in a difficult position weighing options. On one hand we want Doug to stay healthy and on the other hand we would like to have a baby. If I go on cytoxan, it will cause sterility and having a baby will not be an option. Again, he did feel comfortable giving us another 3-6 months to try, but he would like us to commit to going on cytoxan, and not wait a year from now.
Tomorrow I am having a MRI of the brain and face. Dr. Torres recommended doing so since I have been having problems breathing out my nose the past 4 weeks. I will meet with him later in the afternoon to review those and return to Colorado late Friday night.
Today we did not get the total results we wanted but it was a good day hearing that things have not progressed and that we do not have to go on Cytoxan, right now anyway. Gosh we are sure excited to have a baby. Please pray that it happens for us soon.
Side note: Please pray for our friends Dan and Kim and their son and daughter. There son Andrew has been in the hospital the last week or so suffering with a condition called ADEM. Please pray that Andrew takes a turn for the better and soon. Pray for peace and supernatural rest.
Best!
We asked Dr. Luthera about the Bone Marrow transplant idea and he said that the problem was what drug to use to totally kill off the bad cells? It would be a big risk with unsure results.
As Dr. Luthra explained there is so little known about ECD, including treatment, how it progresses etc. He felt we could track the kidneys and other bodily organs with ease because they are easy to CT or MRI. His concern was the long bones of the legs and other areas such as my left wrist and my elbows. Basically the histiocytes cells that are out of control in my body set up shop inside the bones and basically replace the marrow tissue with scar tissue. This means the biggest problem with the condition is killing off my cells. Bones produce cells, red blood cells (o2 carrying cells), white blood cells etc. So if the ECD was to take over the bones I could run the risk of sickness, lack of O2 cells, and such, which is why he is concerned about the bones and doesn't want us to wait too long to go on Cytoxan, as he knows this will help with the ECD in the bones. It's not that there is a major problem there right now, but there is no accurate way to track changes in the bones, so we are gambling in a sense that the condition will not take over the bone marrow.
I explained that we are in a difficult position weighing options. On one hand we want Doug to stay healthy and on the other hand we would like to have a baby. If I go on cytoxan, it will cause sterility and having a baby will not be an option. Again, he did feel comfortable giving us another 3-6 months to try, but he would like us to commit to going on cytoxan, and not wait a year from now.
Tomorrow I am having a MRI of the brain and face. Dr. Torres recommended doing so since I have been having problems breathing out my nose the past 4 weeks. I will meet with him later in the afternoon to review those and return to Colorado late Friday night.
Today we did not get the total results we wanted but it was a good day hearing that things have not progressed and that we do not have to go on Cytoxan, right now anyway. Gosh we are sure excited to have a baby. Please pray that it happens for us soon.
Side note: Please pray for our friends Dan and Kim and their son and daughter. There son Andrew has been in the hospital the last week or so suffering with a condition called ADEM. Please pray that Andrew takes a turn for the better and soon. Pray for peace and supernatural rest.
Best!
Wednesday, March 19, 2008
Rah Rah Rochester!
No I didn't! The title came from one of those handy "Experience Rochester" guides at the sprawling airport known as Rochester International. It's so funny to think of how sprawling this Mayo complex is downtown yet the airport I think has 4 maybe 5 gates.
So made the trip once again. Went smoothly, except I thought the plane in Minneapolis was going to just give up on getting a run way and drive us there. I swear we could have drove there faster. Felt like we taxied 10 miles. We never broke 10,000 ft before we started coming back down. It was funny. If you have to connect in Minneapolis ever make sure you get on the tram for your connecting gate because chances are you will be walking to Canada for your connecting flight. Here I thought putting Denver International in Kansas was bad. LOL.
Chose to stay at the Holiday Inn Express this time vs. Kahler Inn and Suites. I've stayed at the Kahler Inn probably 5-7 times since starting to come up to Mayo and each time the service and hotel has gotten worse and worse this last trip in Nov 07' was the straw that broke the camel's back. HIExpress room is great - cheaper, continental breakfast free and they have hard wire internet, none of that wireless stuff. Only possible drawback is the distance I have to walk to get to where I need to be when the rooster crows. Guy at the desk, not his name, tried telling me. "Well you come down to the 2nd floor go down that hallway take the skyway to this building, turn left take the skyway to this building, go downstairs turn right, turn left, go through this building and your at Mayo!" This should be interesting, they have this place set up! There's food, shoe shine, haircuts, you name it, all underground! It's like a maze down there. Lucky thing they have workers EVERYWHERE you can ask directions from.
Mayo in general. What can I say? I am just speaking for myself, but I think this place is simply amazing. I have never been to a hospital which is so organized, so patient friendly, so full of experts, so analytical. I guess in some ways they have to be the best around. Mayo is this town. As goes Mayo, I'm sure goes the town; so people really seem to take pride in helping others.
Tomorrow bright and early I have scheduled blood work, give them some other bodily fluid, and a Body Ct scan. I am praying to God that is all they need me to do. I am also praying to God that the results of the last 3 months have been nothing short of a miracle. In the afternoon, I meet with Dr. Torres, I think just mainly cause he wants to see me, see how things are going. I think the world of this guy. He has really pulled out all the stops in my treatment. When others said we need to go where no man has gone before, inside Doug, he said Waaaaaait a Min! Is this really necessary? I like doctors who slow down, consult with others before coming to conclusions. Following that I meet 3pm with Dr. Luthera to go over the results.
I had better sign off for now don't want to fall to sleep in the Ct machine, bang my head or worse!
Best!
So made the trip once again. Went smoothly, except I thought the plane in Minneapolis was going to just give up on getting a run way and drive us there. I swear we could have drove there faster. Felt like we taxied 10 miles. We never broke 10,000 ft before we started coming back down. It was funny. If you have to connect in Minneapolis ever make sure you get on the tram for your connecting gate because chances are you will be walking to Canada for your connecting flight. Here I thought putting Denver International in Kansas was bad. LOL.
Chose to stay at the Holiday Inn Express this time vs. Kahler Inn and Suites. I've stayed at the Kahler Inn probably 5-7 times since starting to come up to Mayo and each time the service and hotel has gotten worse and worse this last trip in Nov 07' was the straw that broke the camel's back. HIExpress room is great - cheaper, continental breakfast free and they have hard wire internet, none of that wireless stuff. Only possible drawback is the distance I have to walk to get to where I need to be when the rooster crows. Guy at the desk, not his name, tried telling me. "Well you come down to the 2nd floor go down that hallway take the skyway to this building, turn left take the skyway to this building, go downstairs turn right, turn left, go through this building and your at Mayo!" This should be interesting, they have this place set up! There's food, shoe shine, haircuts, you name it, all underground! It's like a maze down there. Lucky thing they have workers EVERYWHERE you can ask directions from.
Mayo in general. What can I say? I am just speaking for myself, but I think this place is simply amazing. I have never been to a hospital which is so organized, so patient friendly, so full of experts, so analytical. I guess in some ways they have to be the best around. Mayo is this town. As goes Mayo, I'm sure goes the town; so people really seem to take pride in helping others.
Tomorrow bright and early I have scheduled blood work, give them some other bodily fluid, and a Body Ct scan. I am praying to God that is all they need me to do. I am also praying to God that the results of the last 3 months have been nothing short of a miracle. In the afternoon, I meet with Dr. Torres, I think just mainly cause he wants to see me, see how things are going. I think the world of this guy. He has really pulled out all the stops in my treatment. When others said we need to go where no man has gone before, inside Doug, he said Waaaaaait a Min! Is this really necessary? I like doctors who slow down, consult with others before coming to conclusions. Following that I meet 3pm with Dr. Luthera to go over the results.
I had better sign off for now don't want to fall to sleep in the Ct machine, bang my head or worse!
Best!
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