Friday I visited a clinic on Ridgeway Ave. and met with a therapist named Angela that specializes in edema (the fluid retention in my right arm) wraps and sleeves. She took measurements around each arm every 3" from my wrist to my shoulder. One of the measurements was literally 6" around when compared to my left arm. So not only were we surprised from the pain just from the swelling pressure but also the strain on all the additional muscles on my right shoulder from all the added weight of the liquid. Let me tell you in a very Larry the Cable Guy fashion; "this here aint you're granny's ACE bandage". There are 6 layers to this thing. All made out of different stuff. Some you're supposed to use tension others are you're not. It's a mission... poor Dad. Really, the one material to wrap the hand is the complicated one. It cannot cut off circulation but still has to cover everything like it should.
If we do this for awhile (1-2 weeks) and we think it's making a significant difference (this guy's head is saying 1 week). Then I get measured for a custom sleeve and I'm ASSUMING that means just one thing to have to pull over that arm until the cancer is gone.
Tomorrow is the big scan day. No huge promises in cancer rotation as I have only been on the new chemo for one rotation.
Wish me luck and pray extra hard tonight. THANK YOU EVERYONE!!!!!
Saturday, July 31, 2010
Friday, July 23, 2010
Update
Just to give everyone an update on how things are going, I get up every day at 6am. This is just because I have several medications that I have to take 3 times per day (every 8 hours), so that way I can take them at 6am, 2pm and 10pm. Otherwise I could sleep later but have to wake up at midnight to take meds. I usually spend a few hours in the hospital bed that hospice provided then on Tuesdays and Fridays I have an AM appointment at my local doctor's office to measure my blood thickness and my hemoglobin level, then the docs in Iowa City can make some changes to a couple of my meds of necessary.
Other days I'm usually out of bed and in the wheelchair by that time anyway, it feels good to be in a different position. I can pull myself around the house a little with my legs and it helps me build some strength back in my legs. When I have to get up from the bed and walk to the wheelchair or the wheelchair to the car to go to the doctor's office, I can only take 2"-3" steps because of the cancer in my right hip. When I try to put weight on that right hip it hurts immediately. All the muscles in my body are so weak because I can't use them and rebuild them and if I do... I wear out real quickly. The strongest muscles I have right now are my left leg (limited) and my left arm, because I have to do everything with it.
Right now, we have 3 things that are being concentrated on; pain control, cancer and blood clots. Blood clots - I take medicine for it, as long as when they check me, my blood is in the right range, we're good. Cancer - I take my medicine every night, we really won't know if it is or isn't working until I get scanned again which I've been lead to believe will be August 3 rd. Pain control - well this is the tricky one. Bone pain is the worst kind of pain you can have I'm told and right now the cancer has been in the bones of my chest, spine, hip and most notably and painfully, my right shoulder.
I cannot move my right arm at all without assistance from my left arm. I can place it up on a computer to type or in a certain position to try to sleep but other than that, the tumor in my should ate a 2"-3" section of a bone in my upper right arm.
Well that's the update for right now. Please keep praying because at this stage, it's not going to go right without intervention from Him. Without His help, I won't make it. But together with all of you and him... we're gonna kick this thing's butt.
THANK YOU EVERYONE.
Other days I'm usually out of bed and in the wheelchair by that time anyway, it feels good to be in a different position. I can pull myself around the house a little with my legs and it helps me build some strength back in my legs. When I have to get up from the bed and walk to the wheelchair or the wheelchair to the car to go to the doctor's office, I can only take 2"-3" steps because of the cancer in my right hip. When I try to put weight on that right hip it hurts immediately. All the muscles in my body are so weak because I can't use them and rebuild them and if I do... I wear out real quickly. The strongest muscles I have right now are my left leg (limited) and my left arm, because I have to do everything with it.
Right now, we have 3 things that are being concentrated on; pain control, cancer and blood clots. Blood clots - I take medicine for it, as long as when they check me, my blood is in the right range, we're good. Cancer - I take my medicine every night, we really won't know if it is or isn't working until I get scanned again which I've been lead to believe will be August 3 rd. Pain control - well this is the tricky one. Bone pain is the worst kind of pain you can have I'm told and right now the cancer has been in the bones of my chest, spine, hip and most notably and painfully, my right shoulder.
I cannot move my right arm at all without assistance from my left arm. I can place it up on a computer to type or in a certain position to try to sleep but other than that, the tumor in my should ate a 2"-3" section of a bone in my upper right arm.
Well that's the update for right now. Please keep praying because at this stage, it's not going to go right without intervention from Him. Without His help, I won't make it. But together with all of you and him... we're gonna kick this thing's butt.
THANK YOU EVERYONE.
Tuesday, July 13, 2010
I'm Home
So I arrived home yesterday evening and got settled about 6pm. It was GREAT to finally sleep and wake up at home. There is definitely something to be said about healing in your home environment. The right arm still hurts pretty substantially but it's tolerable enough to be able to come home.
With the help of hospice, I have a hospital bed, a tray to go over the bed, a portable oxygen tank, a machine to produce oxygen if I need it and finally a small pump that I carry with me that injects me.
So for now, I'm not doing too bad at all. Feel free to call or text or email me.
Thanks again for all of the prayers. I pray like 10 times a day and ask for this cancer to leave my body and let Him know how thankful I am for all of you.
A SPECIAL THANK YOU TO MY FATHER AND MY SISTER WHO DROVE DOWN EVERY SINGLE DAY THAT I WAS IN THE HOSPITAL. THEY NEVER MISSED A DAY. OFTEN TIMES SPENDING THE NIGHT. THEY WERE WONDERFULLY SUPPORTIVE.
With the help of hospice, I have a hospital bed, a tray to go over the bed, a portable oxygen tank, a machine to produce oxygen if I need it and finally a small pump that I carry with me that injects me.
So for now, I'm not doing too bad at all. Feel free to call or text or email me.
Thanks again for all of the prayers. I pray like 10 times a day and ask for this cancer to leave my body and let Him know how thankful I am for all of you.
A SPECIAL THANK YOU TO MY FATHER AND MY SISTER WHO DROVE DOWN EVERY SINGLE DAY THAT I WAS IN THE HOSPITAL. THEY NEVER MISSED A DAY. OFTEN TIMES SPENDING THE NIGHT. THEY WERE WONDERFULLY SUPPORTIVE.
Friday, July 9, 2010
Update
So, basically I've been back in my regular oncology room for a week now. I've been taking the Ketamine and we've been slowly increasing the dosage until we're satisfied with the pain relief. Right now, I get 100mg 3 times a day. This hasn't caused any crazy side effects which is great!
On Wednesday night we had a minor set back. The muscles in my lower back went into a spasm and wouldn't relax. Some muscle relaxers were prescribed along with additional pain medication for muscle pain. For whatever reason, those darn muscles just didn't seem to want to relax. Any wrong movement and the muscles would spasm again and I would have to immediately lay flat on my back. Since then we've managed to stop the spasms but doing some stretching exercises and using this little electronic gizmo that sends electronic impulses through those muscles. We will continue this tomorrow and hopefully get the back... back to normal.
On another positive note, I've regained some slight use of my right arm compared to the last 33-4 days so this could be a sign that the Sutent is working. That's definitely how I'm going to look at it! Dr. Milhem was just in the room and I told him that we're going to watch this cancer disappear on my scans so I hope he's ready.
Honestly everyone, it's the medicine and the prayers and support from all of you that make this possible. Never forget that or underestimate the power of each and every one of your prayers, they're changing things!! THANK YOU!
On Wednesday night we had a minor set back. The muscles in my lower back went into a spasm and wouldn't relax. Some muscle relaxers were prescribed along with additional pain medication for muscle pain. For whatever reason, those darn muscles just didn't seem to want to relax. Any wrong movement and the muscles would spasm again and I would have to immediately lay flat on my back. Since then we've managed to stop the spasms but doing some stretching exercises and using this little electronic gizmo that sends electronic impulses through those muscles. We will continue this tomorrow and hopefully get the back... back to normal.
On another positive note, I've regained some slight use of my right arm compared to the last 33-4 days so this could be a sign that the Sutent is working. That's definitely how I'm going to look at it! Dr. Milhem was just in the room and I told him that we're going to watch this cancer disappear on my scans so I hope he's ready.
Honestly everyone, it's the medicine and the prayers and support from all of you that make this possible. Never forget that or underestimate the power of each and every one of your prayers, they're changing things!! THANK YOU!
Monday, July 5, 2010
Back from the ICU
I was only in the ICU for about 24hrs. The regular oncology floor cannot administer ketamine through an IV but they can administer ketamine if it's in oral form. So, the ICU got me started on ketamine through an IV, made sure I didn't see strange things, switched me over to the oral version (a horrible tasting liquid that I have to mix with cranberry juice) and sent me back down to the regular oncology floor.
For now, I'm on the oncology floor working on getting the pain under control in hopes of heading home once that happens.
I want to thank everyone for the prayers. The other night I was watching a program on tv in which a young man spoke of his father getting diagnosed with cancer and having tumors the size of grapefruits in his lungs. Yes, grapefruits. Everyone started praying. Between that and what he chose to do medically, miraculously... one month later, not a single trace of tumor could be found anywhere in his body. The doctors were amazed. So please, continue praying.
THANK YOU ALL!
For now, I'm on the oncology floor working on getting the pain under control in hopes of heading home once that happens.
I want to thank everyone for the prayers. The other night I was watching a program on tv in which a young man spoke of his father getting diagnosed with cancer and having tumors the size of grapefruits in his lungs. Yes, grapefruits. Everyone started praying. Between that and what he chose to do medically, miraculously... one month later, not a single trace of tumor could be found anywhere in his body. The doctors were amazed. So please, continue praying.
THANK YOU ALL!
Friday, July 2, 2010
Next Step
Right now I sit in the hospital bed all day with basically two areas of pain; my lower back/right hip area and my right shoulder. As most of you know, in the hospital they always ask you what your pain level is on a scale of 1-10. Well when I'm at rest in bed, both areas just stay a constant 4. If either area is moved in a major way, the pain goes to 10+.
Right Shoulder
There's a large tumor in my right shoulder. As a result, I have limited movement of my right arm. Any movement which involves my right shoulder muscle causes intense pain. Most of the time I have to use my left arm to move my right arm at all if I want to avoid any pain. It's something I've just gotten used to.
Hip/Lower Back
This area isn't too bad (4) just sitting in bed. The challenge comes when I have to sit up or get out of bed. If I sit up straight, even if it is completely assisted, my back seizes and I have to immediately lay flat to stop the seizing. So, that's just another thing to deal with.
Future Plans
Right now I'm sitting in my hospital bed relaxing both of those painful areas waiting for a bed in the SICU (Surgical Intensive Care Unit) to open up. The plan is to start me on an IV drug called Ketamine. The reason behind this is two fold. One, we're hoping it finally helps the pain. Two; all the drugs I'm on right now are opiates. Well I have built up such a tolerance to these opiates that we need some way to lower that. Well, Ketamine hits different pain receptors. So, the Ketamine should be able to control the pain by hitting different pain receptors and give the pain receptors that the opiates hit a break. By doing this, my tolerance to the opiates should drop so that when I go to leave, I can go back on opiates at much lower doses and achieve the same pain relief level. That's what we're hoping anyway. With Ketamine, I need to be in the ICU because I need to be monitored very closely. How many days will I be in the ICU on Ketamine? I have no idea.
That's the plan for now, I'll post when I get moved to the ICU.
Right Shoulder
There's a large tumor in my right shoulder. As a result, I have limited movement of my right arm. Any movement which involves my right shoulder muscle causes intense pain. Most of the time I have to use my left arm to move my right arm at all if I want to avoid any pain. It's something I've just gotten used to.
Hip/Lower Back
This area isn't too bad (4) just sitting in bed. The challenge comes when I have to sit up or get out of bed. If I sit up straight, even if it is completely assisted, my back seizes and I have to immediately lay flat to stop the seizing. So, that's just another thing to deal with.
Future Plans
Right now I'm sitting in my hospital bed relaxing both of those painful areas waiting for a bed in the SICU (Surgical Intensive Care Unit) to open up. The plan is to start me on an IV drug called Ketamine. The reason behind this is two fold. One, we're hoping it finally helps the pain. Two; all the drugs I'm on right now are opiates. Well I have built up such a tolerance to these opiates that we need some way to lower that. Well, Ketamine hits different pain receptors. So, the Ketamine should be able to control the pain by hitting different pain receptors and give the pain receptors that the opiates hit a break. By doing this, my tolerance to the opiates should drop so that when I go to leave, I can go back on opiates at much lower doses and achieve the same pain relief level. That's what we're hoping anyway. With Ketamine, I need to be in the ICU because I need to be monitored very closely. How many days will I be in the ICU on Ketamine? I have no idea.
That's the plan for now, I'll post when I get moved to the ICU.
MRI Update
An MRI was taken of my brain last night.
Result: 100% clear
NO CANCER IN MY BRAIN!!!!
With this great news we can concentrate on fighting the cancer that's in my torso and giving that our full attention.
Thank you again to everyone that has extended prayers and good wishes to me, to those of you that have sent cards or balloons, to those of you who have visited and continue to visit, and to anyone that has said a single prayer for me. If it weren't for all of you I wouldn't have nearly the courage that I do. Thank You!!!
Result: 100% clear
NO CANCER IN MY BRAIN!!!!
With this great news we can concentrate on fighting the cancer that's in my torso and giving that our full attention.
Thank you again to everyone that has extended prayers and good wishes to me, to those of you that have sent cards or balloons, to those of you who have visited and continue to visit, and to anyone that has said a single prayer for me. If it weren't for all of you I wouldn't have nearly the courage that I do. Thank You!!!
Thursday, July 1, 2010
The Battle Gets Tougher
Yesterday, June 30th, I had a CT scan done of my entire torso for a baseline of where the cancer is as I start the new drug, Sutent. Well, we received some unsettling news; the cancer has spread significantly.
This type if cancer spreads through the lymph system and seems to have found its way into nearly all the lymph nodes in my groin and torso. Luckily, no cancer in any organs or my lungs yet.
Today I will be getting an MRI of my brain to make sure the cancer hasn't spread there yet. If it has, that's really bad news. But I'm sure it hasn't. I should know the results late tonight or by noon tomorrow.
As far as updating this blog, I will try and update it as often as I can. With the new tumor in my right arm, it's become very hard to use that arm. I have to move it around with my left arm. It's a big pain in the butt.
I really have to ask for everyones' help. This is tough for me to ask but please pray for me. This new information about the advancement of my cancer has me very focused on my health and how serious this has become. Please, please pray for me as much as you are able. It's all I can ask. THANK YOU ALL.
This type if cancer spreads through the lymph system and seems to have found its way into nearly all the lymph nodes in my groin and torso. Luckily, no cancer in any organs or my lungs yet.
Today I will be getting an MRI of my brain to make sure the cancer hasn't spread there yet. If it has, that's really bad news. But I'm sure it hasn't. I should know the results late tonight or by noon tomorrow.
As far as updating this blog, I will try and update it as often as I can. With the new tumor in my right arm, it's become very hard to use that arm. I have to move it around with my left arm. It's a big pain in the butt.
I really have to ask for everyones' help. This is tough for me to ask but please pray for me. This new information about the advancement of my cancer has me very focused on my health and how serious this has become. Please, please pray for me as much as you are able. It's all I can ask. THANK YOU ALL.
Subscribe to:
Posts (Atom)