Tuesday, August 31, 2010
Sunday, August 29, 2010
Update for another week
Well things were going great. My right arm had its normal pain that I've grown used to. We had been doing the stretches and strength exercises for my lower back for a couple weeks. Well, Friday we just wanted to get me sat up on the edge of the bed. Well, we made it there but after about 30 seconds something popped in my lower back and all of my lower back muscles cramped up and instantaneous pain. 1-10 scale, an absolute 15. I have never felt anything like that. It took the nurse, my father and myself about 10 minutes to reposition me in bed with the pain still there at about an 8 the whole time. The rest of the day was spent laying completely flat hoping for no repeats.
The worst part; I felt absolutely confident that just sitting up would be no problem. My back felt great, everything felt like it was up to the task.
So for now, I will spend at least every day working my legs and hoping we don't have to use an ambulance ride to make it to Iowa City for my Sept 14th appointments. Praying multiple times throughout the day and basically just talking to Him as I go throughout my day, that is what happens all day.
I want to thank all of you that have prayed for my recovery... all of you that have visited me multiple times... all of you that have written wonderful notes. To a wonderful girlfriend. To a magnificent family.
The worst part; I felt absolutely confident that just sitting up would be no problem. My back felt great, everything felt like it was up to the task.
So for now, I will spend at least every day working my legs and hoping we don't have to use an ambulance ride to make it to Iowa City for my Sept 14th appointments. Praying multiple times throughout the day and basically just talking to Him as I go throughout my day, that is what happens all day.
I want to thank all of you that have prayed for my recovery... all of you that have visited me multiple times... all of you that have written wonderful notes. To a wonderful girlfriend. To a magnificent family.
Wednesday, August 18, 2010
New Post
Just thought I should throw an update out there and a few people were sending me emails to remind me :). My chin is up, this is the month we could POSSIBLY see improvements. Currently I'm confined to bed due to some of the same muscle spasms in my lower back and hips. So the hospice nurses visit me at home and the Allen nurses now com to my home to draw draw blood.
My chin is up but I could really use some help keeping it there lately.
My chin is up but I could really use some help keeping it there lately.
Thursday, August 5, 2010
Post August CT Scan Update
First and foremost, I owe everyone a huge apology. I posted on FaceBook that I updated this blog earlier. I had typed it and hit the submit button just as my computer died.... worst part is, it saved none of the drafts.
The CT showed that the specific lymph nodes they're monitoring have grown approximately 1cm. I may have a slight lesion on my spleen and a small lesion on one of my lungs.
Things are up a notch up on the dangerous scale but DO NOT get worried. This is only the first cycle and they judge the drug's effectiveness by the end of the 2nd cycle. This is when the decision on what to do next is made.
THIS IS SERIOUS PRAYING TIME.
The CT showed that the specific lymph nodes they're monitoring have grown approximately 1cm. I may have a slight lesion on my spleen and a small lesion on one of my lungs.
Things are up a notch up on the dangerous scale but DO NOT get worried. This is only the first cycle and they judge the drug's effectiveness by the end of the 2nd cycle. This is when the decision on what to do next is made.
THIS IS SERIOUS PRAYING TIME.
Saturday, July 31, 2010
August update
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!!!!!
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!!!!!
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.
Friday, June 25, 2010
Overdue Update
I know it has been awhile so I'm going to do my best to keep this informative but short. It's very hard for me to type.
The last time I was admitted to UofI I had complained of a sore right shoulder which was x-rayed. Nothing looked abnormal but no further follow up was done. I was discharged on Tuesday, June 15. I had to come back down for radiation every day. When I came back on the 17th, I saw my radiation doctor and said we had to scan that shoulder some other way because it was way too painful for nothing to be wrong. Also, my lower back and hips began to hurt slightly.
Turns out, my right shoulder has a large tumor which has grown into the bone and there were tumors on my lower spine and hips... all of which would also need radiation. Additional, very painful tumors have begun near my original tumor sight in my left heel. All of these new sights are way too much to just keep radiating.
Anyway, radiation is done. I will no longer be going to Boston. I will be taking a different oral chemotherapy once a day called Sutent. This is something I can get locally. No more running all over the country. Hopefully this Sutent will be the stuff to knock this thing out. I am currently still admitted to UofI as we monitor how I handle switching from Dilaudid to Methadone and how I handle the Sutent.
I know this is a pretty compact version of what has happened but I simply didn't have it in me to update over the past few weeks.
THANK YOU EVERYONE... I cannot list you all. You know who you are.
The last time I was admitted to UofI I had complained of a sore right shoulder which was x-rayed. Nothing looked abnormal but no further follow up was done. I was discharged on Tuesday, June 15. I had to come back down for radiation every day. When I came back on the 17th, I saw my radiation doctor and said we had to scan that shoulder some other way because it was way too painful for nothing to be wrong. Also, my lower back and hips began to hurt slightly.
Turns out, my right shoulder has a large tumor which has grown into the bone and there were tumors on my lower spine and hips... all of which would also need radiation. Additional, very painful tumors have begun near my original tumor sight in my left heel. All of these new sights are way too much to just keep radiating.
Anyway, radiation is done. I will no longer be going to Boston. I will be taking a different oral chemotherapy once a day called Sutent. This is something I can get locally. No more running all over the country. Hopefully this Sutent will be the stuff to knock this thing out. I am currently still admitted to UofI as we monitor how I handle switching from Dilaudid to Methadone and how I handle the Sutent.
I know this is a pretty compact version of what has happened but I simply didn't have it in me to update over the past few weeks.
THANK YOU EVERYONE... I cannot list you all. You know who you are.
Saturday, June 12, 2010
U of I Update
So, I'm still in the hospital. Right now we're pretty much waiting until I've had enough radiation to see if it's going to relieve the tumor pain. If it does not, we will most likely have to increase the amount of pain medication that I'm taking (as if it weren't already high enough).
RADIATION:
As of yesterday, I have completed 5 radiation sessions. The tumors were not able to be treated with one beam as we had hoped. Instead, the tumor in my chest is treated with one beam and another beam treats the tumors on my spine and behind my heart. The chest tumor will get a total of 12 treatments (done on June 22nd). The other two will be treated slightly more aggressively in 10 sessions (done on June 18th). So... I'm told I should see some pain relief AROUND the 5-7 session mark.
The sessions are quick and painless. I lie on a table like I'm getting an X-ray. There are marks on my chest that they use to line up the machine. They strap me down. The machine rotates around me until it gets into the 'firing' position, makes a buzzing sound, then rotates to the next position.
PAIN MEDICATION:
We are not changing anything right now unless my pain suddenly increases. As I said above, we're waiting on the radiation. For now, I'm doing OK. I'm very sore all over from not moving around. I have a lot of muscles that have started to atrophy from not moving.
BLOOD CLOTS:
I've been switched from the IV blood thinner to an oral blood thinner called Coumadin. It's a little touchy when it comes to dosing me correctly. I have to get my blood tested every so often to ensure that I'm in the therapeutic range. This will be how I will dose myself at home over the next 6 months.
FOR NOW:
I'm just waiting to see how the radiation is going to turn out. Then they should discharge me once we figure that out. I most likely would not stay in the hospital through my entire radiation treatments.
Thank you to everyone. Thank you to all of those that organized the benefit last night.
Several people have sent me notes wondering how they can donate money if they should choose to. Aaron Hyde set up a great secure way to donate through a website to an account for me at Veridian Credit Union.
http://www.chrisrobertssarcoma.bbnow.org/index.php
RADIATION:
As of yesterday, I have completed 5 radiation sessions. The tumors were not able to be treated with one beam as we had hoped. Instead, the tumor in my chest is treated with one beam and another beam treats the tumors on my spine and behind my heart. The chest tumor will get a total of 12 treatments (done on June 22nd). The other two will be treated slightly more aggressively in 10 sessions (done on June 18th). So... I'm told I should see some pain relief AROUND the 5-7 session mark.
The sessions are quick and painless. I lie on a table like I'm getting an X-ray. There are marks on my chest that they use to line up the machine. They strap me down. The machine rotates around me until it gets into the 'firing' position, makes a buzzing sound, then rotates to the next position.
PAIN MEDICATION:
We are not changing anything right now unless my pain suddenly increases. As I said above, we're waiting on the radiation. For now, I'm doing OK. I'm very sore all over from not moving around. I have a lot of muscles that have started to atrophy from not moving.
BLOOD CLOTS:
I've been switched from the IV blood thinner to an oral blood thinner called Coumadin. It's a little touchy when it comes to dosing me correctly. I have to get my blood tested every so often to ensure that I'm in the therapeutic range. This will be how I will dose myself at home over the next 6 months.
FOR NOW:
I'm just waiting to see how the radiation is going to turn out. Then they should discharge me once we figure that out. I most likely would not stay in the hospital through my entire radiation treatments.
Thank you to everyone. Thank you to all of those that organized the benefit last night.
Several people have sent me notes wondering how they can donate money if they should choose to. Aaron Hyde set up a great secure way to donate through a website to an account for me at Veridian Credit Union.
http://www.chrisrobertssarcoma.bbnow.org/index.php
Friday, June 4, 2010
Big Update - Blood Clots and Radiation
Ok, so it's been awhile. Most of you know that I've been in the hospital for awhile and have probably been wondering why. If you haven't talked to Lynn or Ashley or stopped down to visit me... you probably don't know why.
What happened to get me admitted to the hospital:
5/30 - I woke up... felt nauseous and terrible like usual. Made it out to the living room. Only got 2 of my 6am meds down. I dozed off. I woke up to a pain that felt like someone was stabbing me in my left lung. We called 911 and an ambulance took me to the ER at Covenant. Once we got there, they took a X-ray of my chest. This revealed that I have numerous blood clots in both lungs. Some of you may remember that I had 4-5 in my right lung for which I was taking Fragmin... apparently, that wasn't doing it's job. I now had too many to count and they were in both lungs. Boston and UofI were consulted and the decision to send me down to Iowa City by ambulance was made.
I was now at UofI. We received some good news; the radiologist reviewed the x-ray taken at Covenant and the CT that was ordered at UofI. If you remember... Boston had given me the news that the cancer had spread into my right lung via an artery. Well, since that 'mass' had two weeks to grow and become a little more 'readable', the radiologist now believes that it is NOT a cancerous mass but rather, a large blood clot. This is GREAT news. This means it can be fixed via drugs rather than the cancer that could not. Yippy!!!!
Problem #1: An inventory of the medications I had been taking was created while we were at Covenant. This was to be given to the Uof I. Well, somewhere along the line, the inventory list got lost. So when I arrived at UofI, I was taken to the cardiology floor because I was having 'chest pain'. Well... the cardiology floor didn't have a list of my medication regiment and they are not used to administering narcotics at the level I am taking them. They didn't believe us when we told them the drugs and dosages that I was taking, so they only gave me baby dosages and didn't give them to me as often. This caused me to go for nearly 2 days without getting the morphine, dilaudid or neurontin at the levels I should have. My body was now clear of any medication to help me fight the pain. I was now in an excruciating amount of pain and it would take DAYS to get the medication levels built back up in my system. My dad had gone home and returned with the bottles of medication to convince the doctors that we weren't lying. The doctor was blown away, he couldn't believe that I was on this level of medication. On Tuesday, June 1, my oncologist, Dr. Milhem showed up and took the reigns so-to-speak and had me moved to the oncology floor and told everyone to get me on the dosages that we told them. So, I wouldn't feel good for days, but for now, someone was there to make sure my medication was on par and wasn't scared to increase it if needed.
Tuesday night was HORRIBLE! I had two pain pumps (machines that medicate me when I push a button) and, on a scale from 1-10, I was at a 9 and screaming as they TRIED to control my pain. It was finally decided that, due to my pain level and deteriorating condition, I should be transferred to the intensive care unit. I was wheeled up there, in agony all the way. Well, I was miserable for approximately 24 hours and finally settled down around Thursday morning. I was moderately happy and felt we had everything under control. I THOUGHT!
Problem #2: On Wednesday, the decision had been made to increase my morphine from 120mg 3x/day to 180mg 3x/day. Well, I guess when this happened, their computer system used to UofI put a 24hr block of time in my schedule where I would receive no medication. You got it... this means I didn't receive any morphine AGAIN for a 24hr period. We didn't really notice as the missed dosages started over the night time and they weren't medication me at the same times I was taking the morphine at home (6am, 2pm, 10pm) so we had trusted that they were medication me properly. Well, this meant I fell into a pain trough again until they started dosing me properly on Thursday morning. What a screw up. Not only had they missed medicating me once... but now twice. Hopefully they pay more attention to the patients that would die if they didn't receive their medication. LESSON LEARNED: make sure you pay attention to how you're medicated in the hospital no matter what else is going on.
What's happening now:
Interesting Things:
Every night my temp goes up to around 103-104 degrees F. At first this freaked the doctors out, they ordered all sorts of x-rays and Tylenol. Once my temperature came back down to 98 degrees every morning for 3 days, they started just saying 'eh' and not really worrying about it. As I type this blog, my temperature was just taken and it was 104.3 degrees. It's kind of funny to me.
Heparin is the drug they are using to thing my blood to help with the blood clots. Well, the doctors and pharmacists here were also baffled at how my body handled this stuff. The 'therapeutic level' for this drug (level at which it helps me) is 40%-70%. Well, they dosed me. It was 35%. They increased it like 5 times and it just wouldn't go any higher than 39%. They finally got it up to the low 50%/high 40% range and we were happy. This lasted for about 2 days. Suddenly, it dropped to like 35% again. So they had to increase the dose again. They don't know what's doing on. They say I'm a pain in the ass when it comes to dosing my medication :-)
Also, my body seems to be very tolerant of drugs. Right now they said I'm like dosing an elephant. Apparently the level of Dilaudid I'm on would kill most people. That doesn't really make me happy but it is what it is.
Thank you to each and every person that has come to visit me. The company has really helped in getting through all of this.
Thank you to anyone that has sent me a text msg over the past week. They have been helpful as well.
THANK YOU to Ashley, who booked a 1-way ticket and has stayed with me in the ICU every other night, trading shifts with my sister.
THANK YOU to my sister who also booked a 1-way ticket and has stayed with me in the ICU every night that Ashley hasn't.
THANK YOU to my dad who had driven down every day and has brought down anything and everything that I've requested.
THANK YOU to Daria, her parents and their friends who came down and shared an amazing hour with me. Thank you very much!
THANK YOU to the staff of UofI for being incredible (with the exception of the medication mistakes). Also, thank you to the staff of the UofI ICU for allowing Ashley and Lynn to sleep in the ICU. They are not supposed to do this, but they have been really lenient.
What happened to get me admitted to the hospital:
5/30 - I woke up... felt nauseous and terrible like usual. Made it out to the living room. Only got 2 of my 6am meds down. I dozed off. I woke up to a pain that felt like someone was stabbing me in my left lung. We called 911 and an ambulance took me to the ER at Covenant. Once we got there, they took a X-ray of my chest. This revealed that I have numerous blood clots in both lungs. Some of you may remember that I had 4-5 in my right lung for which I was taking Fragmin... apparently, that wasn't doing it's job. I now had too many to count and they were in both lungs. Boston and UofI were consulted and the decision to send me down to Iowa City by ambulance was made.
I was now at UofI. We received some good news; the radiologist reviewed the x-ray taken at Covenant and the CT that was ordered at UofI. If you remember... Boston had given me the news that the cancer had spread into my right lung via an artery. Well, since that 'mass' had two weeks to grow and become a little more 'readable', the radiologist now believes that it is NOT a cancerous mass but rather, a large blood clot. This is GREAT news. This means it can be fixed via drugs rather than the cancer that could not. Yippy!!!!
Problem #1: An inventory of the medications I had been taking was created while we were at Covenant. This was to be given to the Uof I. Well, somewhere along the line, the inventory list got lost. So when I arrived at UofI, I was taken to the cardiology floor because I was having 'chest pain'. Well... the cardiology floor didn't have a list of my medication regiment and they are not used to administering narcotics at the level I am taking them. They didn't believe us when we told them the drugs and dosages that I was taking, so they only gave me baby dosages and didn't give them to me as often. This caused me to go for nearly 2 days without getting the morphine, dilaudid or neurontin at the levels I should have. My body was now clear of any medication to help me fight the pain. I was now in an excruciating amount of pain and it would take DAYS to get the medication levels built back up in my system. My dad had gone home and returned with the bottles of medication to convince the doctors that we weren't lying. The doctor was blown away, he couldn't believe that I was on this level of medication. On Tuesday, June 1, my oncologist, Dr. Milhem showed up and took the reigns so-to-speak and had me moved to the oncology floor and told everyone to get me on the dosages that we told them. So, I wouldn't feel good for days, but for now, someone was there to make sure my medication was on par and wasn't scared to increase it if needed.
Tuesday night was HORRIBLE! I had two pain pumps (machines that medicate me when I push a button) and, on a scale from 1-10, I was at a 9 and screaming as they TRIED to control my pain. It was finally decided that, due to my pain level and deteriorating condition, I should be transferred to the intensive care unit. I was wheeled up there, in agony all the way. Well, I was miserable for approximately 24 hours and finally settled down around Thursday morning. I was moderately happy and felt we had everything under control. I THOUGHT!
Problem #2: On Wednesday, the decision had been made to increase my morphine from 120mg 3x/day to 180mg 3x/day. Well, I guess when this happened, their computer system used to UofI put a 24hr block of time in my schedule where I would receive no medication. You got it... this means I didn't receive any morphine AGAIN for a 24hr period. We didn't really notice as the missed dosages started over the night time and they weren't medication me at the same times I was taking the morphine at home (6am, 2pm, 10pm) so we had trusted that they were medication me properly. Well, this meant I fell into a pain trough again until they started dosing me properly on Thursday morning. What a screw up. Not only had they missed medicating me once... but now twice. Hopefully they pay more attention to the patients that would die if they didn't receive their medication. LESSON LEARNED: make sure you pay attention to how you're medicated in the hospital no matter what else is going on.
What's happening now:
Interesting Things:
Every night my temp goes up to around 103-104 degrees F. At first this freaked the doctors out, they ordered all sorts of x-rays and Tylenol. Once my temperature came back down to 98 degrees every morning for 3 days, they started just saying 'eh' and not really worrying about it. As I type this blog, my temperature was just taken and it was 104.3 degrees. It's kind of funny to me.
Heparin is the drug they are using to thing my blood to help with the blood clots. Well, the doctors and pharmacists here were also baffled at how my body handled this stuff. The 'therapeutic level' for this drug (level at which it helps me) is 40%-70%. Well, they dosed me. It was 35%. They increased it like 5 times and it just wouldn't go any higher than 39%. They finally got it up to the low 50%/high 40% range and we were happy. This lasted for about 2 days. Suddenly, it dropped to like 35% again. So they had to increase the dose again. They don't know what's doing on. They say I'm a pain in the ass when it comes to dosing my medication :-)
Also, my body seems to be very tolerant of drugs. Right now they said I'm like dosing an elephant. Apparently the level of Dilaudid I'm on would kill most people. That doesn't really make me happy but it is what it is.
Next Step:
I have elected to start radiation therapy on Monday. I have 3 tumors in my chest. One on my sternum, one between my heart and my windpipe/esophagus and one that is deteriorating a bone in my spine. I'm told they should be able to hit all three tumors with one beam and my pain should improve within a month. Unfortunately it feels like things are going downhill as I had hopes to avoid radiation but my spirits are still way up and I still plan on kicking this cancer in the teeth. I will get through this! Know that I haven't lost one ounce of the fighter in me.
Thank You's:Thank you to each and every person that has come to visit me. The company has really helped in getting through all of this.
Thank you to anyone that has sent me a text msg over the past week. They have been helpful as well.
THANK YOU to Ashley, who booked a 1-way ticket and has stayed with me in the ICU every other night, trading shifts with my sister.
THANK YOU to my sister who also booked a 1-way ticket and has stayed with me in the ICU every night that Ashley hasn't.
THANK YOU to my dad who had driven down every day and has brought down anything and everything that I've requested.
THANK YOU to Daria, her parents and their friends who came down and shared an amazing hour with me. Thank you very much!
THANK YOU to the staff of UofI for being incredible (with the exception of the medication mistakes). Also, thank you to the staff of the UofI ICU for allowing Ashley and Lynn to sleep in the ICU. They are not supposed to do this, but they have been really lenient.
Friday, May 28, 2010
Another Rough Trip to Boston
Unfortunately, I'm grateful that I did not travel alone to Boston these past few days. Over the past week, I have began to get nauseous about 1-2 hours after taking my chemo pills. My p.m. dose on Tuesday kept me up until around 3 a.m. Wednesday. That morning I took my a.m. dose after having eaten some fresh fruit in the airport. Well, the fruit and anything else came up on the plane. Thank goodness for those little airplane baggies. I was able to drink some water and take a few more of my pain meds throughout the day but was definitely not in top form. My p.m. dose of chemo on Wednesday is when things took a turn for the worse. Slightly over 1 hour after taking my chemo, I vomited again and couldn't keep water down. Because of this, I couldn't take my 10pm pain meds or my 6am pain meds on Thursday morning.
Because of missing these two sessions of pain medication, I started suffering slight withdrawals from the medication along with a pain the I hadn't experienced before. Thursday morning was spent in the CRC with an IV of fluids, pain medication and anti-nausea medicine to level me out. I was given a dose of chemo while in the CRC which I was able to keep down with no problem. Not wanting a repeat of the plane ride on Wednesday, I chose not to take the chemo this morning as we traveled back to Iowa and will take my p.m. dose this evening and see how that goes.
There have also been some changes to my pain medication. The regiment that I was on wasn't quite cutting it so they have taken me off the morphine and I will now be on methadone. Apparently methadone has a longer half-life and should stay in my system longer as well as help more with the nerve pain in my chest. The neurontin has been increased 50% and the addition of Ritalin to help keep me awake as nearly every drug I'm on makes me drowsy and I've found it hard to concentrate at work sometime. So... more pills for my pills I guess.
Next visit to Boston is in 2 weeks and will include a CT scan.
In closing:
Everyone's continued support has done nothing short of amaze me. Those of you that surround me each day, that read this blog, that offer your prayers and kind words are what make getting through this battle possible. Never before have I seen such goodness in people. I admit, the level of discomfort I experienced while unable to take my pain medication caused my resolve to waiver. I felt beaten. It was each and every one of you that helped push me through that.
Cherish the small things in life. Right down to being able to draw a breath without pain.
Because of missing these two sessions of pain medication, I started suffering slight withdrawals from the medication along with a pain the I hadn't experienced before. Thursday morning was spent in the CRC with an IV of fluids, pain medication and anti-nausea medicine to level me out. I was given a dose of chemo while in the CRC which I was able to keep down with no problem. Not wanting a repeat of the plane ride on Wednesday, I chose not to take the chemo this morning as we traveled back to Iowa and will take my p.m. dose this evening and see how that goes.
There have also been some changes to my pain medication. The regiment that I was on wasn't quite cutting it so they have taken me off the morphine and I will now be on methadone. Apparently methadone has a longer half-life and should stay in my system longer as well as help more with the nerve pain in my chest. The neurontin has been increased 50% and the addition of Ritalin to help keep me awake as nearly every drug I'm on makes me drowsy and I've found it hard to concentrate at work sometime. So... more pills for my pills I guess.
Next visit to Boston is in 2 weeks and will include a CT scan.
In closing:
Everyone's continued support has done nothing short of amaze me. Those of you that surround me each day, that read this blog, that offer your prayers and kind words are what make getting through this battle possible. Never before have I seen such goodness in people. I admit, the level of discomfort I experienced while unable to take my pain medication caused my resolve to waiver. I felt beaten. It was each and every one of you that helped push me through that.
Cherish the small things in life. Right down to being able to draw a breath without pain.
Saturday, May 15, 2010
New Boston Schedule
I fly out the day before each of these appointments and fly back the day after.
May 27
June 9 & 10 (CT scan)
July 8
August 4 & 5 (CT scan)
May 27
June 9 & 10 (CT scan)
July 8
August 4 & 5 (CT scan)
How I'm getting along
Well, I've been home for a couple of days now. I pretty much have the medication schedule down. It's quite the schedule but it's necessary. The only real downside is that I can't drive anymore. Large doses of narcotics and driving don't mix. That's been the biggest bummer for me, cars and driving were my favorite things. So it looks like when it comes to the camaro, washing it will be all I'll be able to do... for awhile.
So far, my left leg remains really swollen, all the way up into my hip. Why it's retaining so much fluid, no one knows. I'm on a 'water pill' that's supposed to help, but it doesn't really make get rid of too much fluid. My chest hurts all the time, but not anymore than I would expect. The morphine and dilaudid do an ok job of keeping it from being intolerable.
I plan on returning to work on Monday.
Ashley gets into town on Wednesday. Hopefully I can take vacation from noon on Wednesday through the rest of the week to spend time with her.
So far, my left leg remains really swollen, all the way up into my hip. Why it's retaining so much fluid, no one knows. I'm on a 'water pill' that's supposed to help, but it doesn't really make get rid of too much fluid. My chest hurts all the time, but not anymore than I would expect. The morphine and dilaudid do an ok job of keeping it from being intolerable.
I plan on returning to work on Monday.
Ashley gets into town on Wednesday. Hopefully I can take vacation from noon on Wednesday through the rest of the week to spend time with her.
Tuesday, May 11, 2010
Summary of my time in the Boston Hospital
SHORT VERSION:
Arrival on Thursday, May 6th:
Couldn't walk.
Pain was at an all time high.
Looked and felt miserable.
Discharged on Tuesday, May 11th:
Can now walk - feet are swollen like I'm 80 yrs old.
On enough pain medicine that I don't feel much.
Look and feel better. (Well I look as good as I always did)
Big smiles everyone.
To give you an idea of the kind of pain suppression we're talking about when comparing my former medication to what I'm on now, I'll list it for everyone.
Formerly:
Morphine, 15mg, every 4 hrs.
Now:
Morphine, 120mgs, 3 times per day (pain)
Dilaudid (morphine's big brother), 16-24mg, every 2 hours (pain)
Fragmin, self-injection (for the blood clots in my lungs)
Neurontin, 600mg, 3 times per day (for nerve pain in my feet)
Prednisone, varying dose (anti-inflammatory steroid)
Ibuprofen, 600mg every 6 hours (anti-inflammatory)
Omeprazole, 20mg per day (basically Prilosec for acid control)
Colace, 100mg, twice per day (stool softener)
Senna Tablets, 17.2 mg, 3 times per day (stool softener)
Lactulose, 3o milliliters daily (for constipation)
Miralax, 17 mg, twice per day (for constipation)
Ambien, 10mg at bedtime (to help this baby sleep)
Arrival on Thursday, May 6th:
Couldn't walk.
Pain was at an all time high.
Looked and felt miserable.
Discharged on Tuesday, May 11th:
Can now walk - feet are swollen like I'm 80 yrs old.
On enough pain medicine that I don't feel much.
Look and feel better. (Well I look as good as I always did)
Big smiles everyone.
To give you an idea of the kind of pain suppression we're talking about when comparing my former medication to what I'm on now, I'll list it for everyone.
Formerly:
Morphine, 15mg, every 4 hrs.
Now:
Morphine, 120mgs, 3 times per day (pain)
Dilaudid (morphine's big brother), 16-24mg, every 2 hours (pain)
Fragmin, self-injection (for the blood clots in my lungs)
Neurontin, 600mg, 3 times per day (for nerve pain in my feet)
Prednisone, varying dose (anti-inflammatory steroid)
Ibuprofen, 600mg every 6 hours (anti-inflammatory)
Omeprazole, 20mg per day (basically Prilosec for acid control)
Colace, 100mg, twice per day (stool softener)
Senna Tablets, 17.2 mg, 3 times per day (stool softener)
Lactulose, 3o milliliters daily (for constipation)
Miralax, 17 mg, twice per day (for constipation)
Ambien, 10mg at bedtime (to help this baby sleep)
Monday, May 10, 2010
Time in the hospital
This is a little info about what's been going on since my admission to the hospital. As described in my last entry, the first few days were miserable; a lot of pain and a lot of visits from the doctors and having to explain everything several times. Really exhausting.
Starting Sunday and into Monday it seemed as though we had found the right combo of drugs to make the pain bearable. I was taking a good dose of morphine (pills) and some medicine for nerve pain (pills) 3 times per day. This was to provide a steady, all-day base for pain control. In addition to that, I would take dilaudid (IV) every two hours as needed if there were spikes in pain.
The challenge now is converting the dilaudid (IV) to dilaudid (pills). I'm told it's normally a simple conversion; something like for every mg of IV you need 5 mg of pills. Since I was on 4mg of dilaudid IV, we tried 20mg of dilaudid pills. Well, that didn't work. So for now we're trying other combos in hopes of getting me to 100% pills so I can be discharged.
Once discharged from the hospital on Tuesday, I will have to spend all day Wednesday in the Clinical Research Center to complete the day of testing for the trial that I missed last week due to being admitted to the hospital. If all goes well, I will be put back on the chemo pills at a slightly lower dose. Then I can return to Waterloo on Thursday.
How are my legs? Well I can walk on them, but they're still swollen, especially my left foot. We have yet to figure out why or how to prevent it from happening again.
For now, I'll take the progress and look forward to being back on the chemo and kickin' the cancer.
Email address: Chris97899@aol.com
Starting Sunday and into Monday it seemed as though we had found the right combo of drugs to make the pain bearable. I was taking a good dose of morphine (pills) and some medicine for nerve pain (pills) 3 times per day. This was to provide a steady, all-day base for pain control. In addition to that, I would take dilaudid (IV) every two hours as needed if there were spikes in pain.
The challenge now is converting the dilaudid (IV) to dilaudid (pills). I'm told it's normally a simple conversion; something like for every mg of IV you need 5 mg of pills. Since I was on 4mg of dilaudid IV, we tried 20mg of dilaudid pills. Well, that didn't work. So for now we're trying other combos in hopes of getting me to 100% pills so I can be discharged.
Once discharged from the hospital on Tuesday, I will have to spend all day Wednesday in the Clinical Research Center to complete the day of testing for the trial that I missed last week due to being admitted to the hospital. If all goes well, I will be put back on the chemo pills at a slightly lower dose. Then I can return to Waterloo on Thursday.
How are my legs? Well I can walk on them, but they're still swollen, especially my left foot. We have yet to figure out why or how to prevent it from happening again.
For now, I'll take the progress and look forward to being back on the chemo and kickin' the cancer.
Email address: Chris97899@aol.com
Friday, May 7, 2010
Admission to Hospital in Boston
First of all, I apologize for not getting a post out earlier but the past few days have been very rough.
Wednesday, May 5th:
Flew to Boston, very rough travel. Couldn't walk, had to be transported throughout the airport and my flights in a wheelchair. Arrived in Boston around 5pm and spent the evening in my hotel room in a lot of pain. Couldn't walk due to the pain in my feet and the sternal pain has been nearly unbearable.
Thursday, May 6th:
Very rough morning, took me 45 minutes to get out of bed. Managed to get to the hospital. My second biopsy was completed. Good news there was that some of the tumor in my left groin appeared to be fluid filled, so it's size should decrease when the biopsy incision is all healed up. After the biopsy I was wheeled to the CRC and spent a few hours there trying to rest. It was then that the decision was made to admit me to the hospital due to my pain and condition of my legs. Thursday evening in the hospital was very rough. I had an MRI of my spine and a CT scan of my chest. The MRI was to make sure there wasn't a tumor that was compressing a part of my spine and causing the issues in my legs. The CT scan was to see what was going on with the tumors in my chest. With all of this, there was a lot of movement from my bed to a stretcher to the tables to do the scans then back to the stretcher and to the my bed. Unfortunately, I was in so much pain that they had to use a board to slide me from each platform to another. We completed everything at 11pm. My sister and her husband flew up to Boston for support after hearing I would need to be admitted.
Friday, May 7th:
Today I must have met every doctor in Boston. The visits didn't start until around 9 o'clock this morning but after that it was a revolving door all day. Results of the MRI of my spine showed that there is no significant tumor(s) that are compressing my spine in any way. This is a very good thing. CT scan shows that the cancer in my chest has spread to my right side and may be progressing along an artery that leads into one of my lungs. It also indicated that I do have a few blood clots in my right lung. However, I'm told the blood clots are treatable; I have to get a shot in my belly every day for awhile. This will thin my blood and help break down the blood clot. I was also given a pneumonia vaccination as a precaution.
One very good thing that came out of today is that my pain management is on the right track. I've been on IV pain medication since being admitted to the hospital, but my sternal pain is to the point that morphine just doesn't cut it. So I'm now on morphine's big brother; a drug called Dilaudid. 4mg every 2 hours.
Summary:
Admitted to the hospital for at least 2 more days.
Intense pain in my chest and am still unable to use my legs properly.
Blood clots in my right lung which are treatable.
Cancer in chest has spread to the right side.
Cancer sites that we are monitoring have grown approximately 10%.
Currently on IV pain management.
Current Plan:
MRI my legs.
Solidify a pain medication regiment.
Get as much rest as possible over the weekend in hopes of being able to return home as soon as possible.
Most Importantly:
Thank you so very much. I could never name everyone that deserves an individual thank you this past week and since my diagnosis. Thank you to all of my co-workers; those that are covering my work load, those that have offered additional support and prayers outside of work. Thank you to everyone that has sent a text message to chat while I'm here, it's great hearing from friends in times like these. Thank you Aaron Hyde, your phone call was a life changer.
Wednesday, May 5th:
Flew to Boston, very rough travel. Couldn't walk, had to be transported throughout the airport and my flights in a wheelchair. Arrived in Boston around 5pm and spent the evening in my hotel room in a lot of pain. Couldn't walk due to the pain in my feet and the sternal pain has been nearly unbearable.
Thursday, May 6th:
Very rough morning, took me 45 minutes to get out of bed. Managed to get to the hospital. My second biopsy was completed. Good news there was that some of the tumor in my left groin appeared to be fluid filled, so it's size should decrease when the biopsy incision is all healed up. After the biopsy I was wheeled to the CRC and spent a few hours there trying to rest. It was then that the decision was made to admit me to the hospital due to my pain and condition of my legs. Thursday evening in the hospital was very rough. I had an MRI of my spine and a CT scan of my chest. The MRI was to make sure there wasn't a tumor that was compressing a part of my spine and causing the issues in my legs. The CT scan was to see what was going on with the tumors in my chest. With all of this, there was a lot of movement from my bed to a stretcher to the tables to do the scans then back to the stretcher and to the my bed. Unfortunately, I was in so much pain that they had to use a board to slide me from each platform to another. We completed everything at 11pm. My sister and her husband flew up to Boston for support after hearing I would need to be admitted.
Friday, May 7th:
Today I must have met every doctor in Boston. The visits didn't start until around 9 o'clock this morning but after that it was a revolving door all day. Results of the MRI of my spine showed that there is no significant tumor(s) that are compressing my spine in any way. This is a very good thing. CT scan shows that the cancer in my chest has spread to my right side and may be progressing along an artery that leads into one of my lungs. It also indicated that I do have a few blood clots in my right lung. However, I'm told the blood clots are treatable; I have to get a shot in my belly every day for awhile. This will thin my blood and help break down the blood clot. I was also given a pneumonia vaccination as a precaution.
One very good thing that came out of today is that my pain management is on the right track. I've been on IV pain medication since being admitted to the hospital, but my sternal pain is to the point that morphine just doesn't cut it. So I'm now on morphine's big brother; a drug called Dilaudid. 4mg every 2 hours.
Summary:
Admitted to the hospital for at least 2 more days.
Intense pain in my chest and am still unable to use my legs properly.
Blood clots in my right lung which are treatable.
Cancer in chest has spread to the right side.
Cancer sites that we are monitoring have grown approximately 10%.
Currently on IV pain management.
Current Plan:
MRI my legs.
Solidify a pain medication regiment.
Get as much rest as possible over the weekend in hopes of being able to return home as soon as possible.
Most Importantly:
Thank you so very much. I could never name everyone that deserves an individual thank you this past week and since my diagnosis. Thank you to all of my co-workers; those that are covering my work load, those that have offered additional support and prayers outside of work. Thank you to everyone that has sent a text message to chat while I'm here, it's great hearing from friends in times like these. Thank you Aaron Hyde, your phone call was a life changer.
Friday, April 30, 2010
The Past Few Days
Beginning last Sunday, April 25th, a slight cramping feeling started in my right calf. The cramping feeling got progressively worse through Tuesday evening.
Under the advisement of my doctors in Boston and Iowa City, I went to the local emergency room at Covenant Medical center for an ultrasound to make sure it wasn't a blood clot. No clot was found, everything looked great. Covenant also did some blood work and, according to the Covenant doctor, I "look perfectly healthy on paper, but there's obviously something going on in that leg". We left Covenant with a prescription for antibiotics and the guess that it was an infection of some kind, time would tell.
Well, time told. I woke up Thursday in more pain and by Thursday night the cramping pain had progressed into both feet. So I now had both feet and a right calf that felt like they were cramping and wouldn't stop.
Upon hearing this news on Friday morning, both Boston and Iowa City advised me to get to Iowa City immediately to see my oncologist (better perspective on my particular case than the ER doctor had) to figure out just what was going on with my legs.
A breath of fresh air: Boston and IC now both think they know what's happening. After the clear ultrasound and blood work that hasn't flagged anything, they believe that my calf and feet are just cramping continuously. This can happen with the type of trial drugs that I'm on because they can deplete a lot of the magnesium, electrolytes, etc. in my system. Why my feet and calf? Because they're the muscles you use the most every day. Now, I know that doesn't sound like fun (and it's not) but the good news is; it's easy to fix. TUMS and Powerade and a heating pad should help clear it up in about 48 hours.
Iowa City is still running some blood work to make sure no permanent tissue damage has been done, but for now, I am to rest up and stop the chemotherapy drugs until I'm back in Boston.
Short term good: I get a break from the chemo and I don't have to fast anymore. I won't be taking anything but Aleve :-)
What's Next:
Fly to Boston on Wednesday, May 5th. Get a biopsy and some more testing and potentially go back on the chemo.
Thank you everyone, especially those of you at work who have helped support me while I had to take this sudden time off. Believe me, I'd work 48hrs straight rather than have those 48 straight hours of continuously cramping feet. :-)
Under the advisement of my doctors in Boston and Iowa City, I went to the local emergency room at Covenant Medical center for an ultrasound to make sure it wasn't a blood clot. No clot was found, everything looked great. Covenant also did some blood work and, according to the Covenant doctor, I "look perfectly healthy on paper, but there's obviously something going on in that leg". We left Covenant with a prescription for antibiotics and the guess that it was an infection of some kind, time would tell.
Well, time told. I woke up Thursday in more pain and by Thursday night the cramping pain had progressed into both feet. So I now had both feet and a right calf that felt like they were cramping and wouldn't stop.
Upon hearing this news on Friday morning, both Boston and Iowa City advised me to get to Iowa City immediately to see my oncologist (better perspective on my particular case than the ER doctor had) to figure out just what was going on with my legs.
A breath of fresh air: Boston and IC now both think they know what's happening. After the clear ultrasound and blood work that hasn't flagged anything, they believe that my calf and feet are just cramping continuously. This can happen with the type of trial drugs that I'm on because they can deplete a lot of the magnesium, electrolytes, etc. in my system. Why my feet and calf? Because they're the muscles you use the most every day. Now, I know that doesn't sound like fun (and it's not) but the good news is; it's easy to fix. TUMS and Powerade and a heating pad should help clear it up in about 48 hours.
Iowa City is still running some blood work to make sure no permanent tissue damage has been done, but for now, I am to rest up and stop the chemotherapy drugs until I'm back in Boston.
Short term good: I get a break from the chemo and I don't have to fast anymore. I won't be taking anything but Aleve :-)
What's Next:
Fly to Boston on Wednesday, May 5th. Get a biopsy and some more testing and potentially go back on the chemo.
Thank you everyone, especially those of you at work who have helped support me while I had to take this sudden time off. Believe me, I'd work 48hrs straight rather than have those 48 straight hours of continuously cramping feet. :-)
Thursday, April 22, 2010
Dana Farber Follow-up & small but good news
Today was an all day event in the CRC. Very simply, this visit was to make sure that my body is still handling the chemo without doing damage. This consisted of 3 blood draws and 6 EKGs over a 9 hour period. My EKGs looked perfect as well as the blood work. So far, so good, the chemo isn't doing any permanent damage at all. Chalk one up for the new era of targeted medicine. The best news: I can start eating small meals with my pills starting on May 7th. No more of this fasting before and after stuff. For some reason Pfizer bumped the date up... which I very much appreciate.
Dr. Charles Yoon (he did my biopsy) stopped by to follow-up on the incision made from my biopsy. Everything has healed very well and he'll open it up again in two weeks to do a follow-up biopsy after being on the chemo treatment for 28 days.
Dr. Butrynski paid me a visit. We discussed some of the changes in the pain in my chest and potential pain management possibilities for down the road if things change. For now I prefer to take as few pain killers as I can, yet stay comfortable.
Other than that, I slept nearly all day. It feels like I've slept 16 hrs of the last 24 and cannot seem to be able to shake the feeling of exhaustion.
As of today, the pain in the left side of my chest is almost completely gone. The downside is that it seems to have migrated to the right side of my chest. The discomfort is a mirror image of what I felt on my left side. Even Dr. B doesn't know why or how that would happen. We hope to learn more in June when I have my second CT scan.
Next Step:
I'll be right back here in 2 weeks. The only thing different from this appointment will be a follow-up biopsy before I head over to the CRC. For those of you wondering if this is or isn't working; we really won't know until after I get my second CT scan which is scheduled for my June 2nd-3rd visit. It's a lot of waiting (believe me I know), but we won't really know until then.
Thank you everyone for your continued prayers and support. I do believe that those prayers have contributed greatly to the reduction of pain in my chest.
Until I have more news, Thank you.
Dr. Charles Yoon (he did my biopsy) stopped by to follow-up on the incision made from my biopsy. Everything has healed very well and he'll open it up again in two weeks to do a follow-up biopsy after being on the chemo treatment for 28 days.
Dr. Butrynski paid me a visit. We discussed some of the changes in the pain in my chest and potential pain management possibilities for down the road if things change. For now I prefer to take as few pain killers as I can, yet stay comfortable.
Other than that, I slept nearly all day. It feels like I've slept 16 hrs of the last 24 and cannot seem to be able to shake the feeling of exhaustion.
As of today, the pain in the left side of my chest is almost completely gone. The downside is that it seems to have migrated to the right side of my chest. The discomfort is a mirror image of what I felt on my left side. Even Dr. B doesn't know why or how that would happen. We hope to learn more in June when I have my second CT scan.
Next Step:
I'll be right back here in 2 weeks. The only thing different from this appointment will be a follow-up biopsy before I head over to the CRC. For those of you wondering if this is or isn't working; we really won't know until after I get my second CT scan which is scheduled for my June 2nd-3rd visit. It's a lot of waiting (believe me I know), but we won't really know until then.
Thank you everyone for your continued prayers and support. I do believe that those prayers have contributed greatly to the reduction of pain in my chest.
Until I have more news, Thank you.
Sunday, April 11, 2010
Chemo - Day 4
Well, it's Sunday morning, day 4 on the clinical trial. To be clinically accurate; Cycle 1, Day 4 (Cycles are 28 days). So far everything is going very well. The pills make me a little nauseous but I'm told that will probably go away when my body adjusts a little. Also, once I get to cycle 2 day: day 15 (May 20th) I'll be able to eat small meals when I take the pills, so that will be a very good day. For now, no eating 2 hours prior and 2 hours after taking the pills. I haven't been told nor have I asked when we will know "if this is working". I have my schedule for Boston through August. I'll be back there fairly often for blood work (mainly to make sure this stuff isn't hurting my liver and to make sure I'm soaking it all up), but the next time I'm scheduled for any kind of a scan is June 2. On that date I'm scheduled for another CT scan of my torso.
Most of my Boston trips will require flying out the day before the appointment and returning the day after.
CRC = Cancer Research Center
Dr. B = Dr. Butrynski (My main Dr. in Boston)
For now this is what the Boston schedule looks like:
April 22 = CRC and Dr. B.
May 6 = CRC, 2nd Biopsy, Dr. B, back to the CRC
May 20 = CRC and Dr. B.
June 2-3
June 2 = CT scan
June 3 = CRC and Dr. B.
July 1 = CRC and Dr. B.
July 28-29
July 28 = CT Scan
July 29 = CRC and Dr. B.
August 26 = Dr. B.
Next Step:
April 22nd all day visit to Boston.
Thanks again to all of you for the prayers and support throughout all of this and in particular, when I was in Boston for the first treatment. It may get old, but each entry will end with a Thank You to all of you.
Most of my Boston trips will require flying out the day before the appointment and returning the day after.
CRC = Cancer Research Center
Dr. B = Dr. Butrynski (My main Dr. in Boston)
For now this is what the Boston schedule looks like:
April 22 = CRC and Dr. B.
May 6 = CRC, 2nd Biopsy, Dr. B, back to the CRC
May 20 = CRC and Dr. B.
June 2-3
June 2 = CT scan
June 3 = CRC and Dr. B.
July 1 = CRC and Dr. B.
July 28-29
July 28 = CT Scan
July 29 = CRC and Dr. B.
August 26 = Dr. B.
Next Step:
April 22nd all day visit to Boston.
Thanks again to all of you for the prayers and support throughout all of this and in particular, when I was in Boston for the first treatment. It may get old, but each entry will end with a Thank You to all of you.
Thursday, April 8, 2010
First Chemotherapy Treatment
At 9:35am this morning, I received my first chemotherapy treatment; 250mg of the experimental Pfiezer drug. I haven't eaten since 7:30pm last night and cannot eat again until 11:35am this morning so I'm a little nauseous and very tired.
This morning they also had to do minor surgery on my leg to obtain several biopsy samples for the study.
That's all for now, more updates later.
Thank you everyone.
This morning they also had to do minor surgery on my leg to obtain several biopsy samples for the study.
That's all for now, more updates later.
Thank you everyone.
Tuesday, April 6, 2010
Consent Forms Signed - New Info
Ok, so let's get a little technical here. This is part of what it says on my consent form:
Protocol Title:
Phase 1 Safety, Pharmacokinetic and Pharmacodynamic Study of PF-02341066, A C-MET/HGFR Selective Tyrosine Kinase Inhibitor, Administered Orally to Patients with Advanced Cancer.
(So... the drug I am taking is made by Pfiezer and is called PF-02341066)
Another part of the consent form explains:
"Tumor growth is found to be largely controlled by tiny structures on the outer surface of tumor cells called growth factor receptors. A particular growth factor receptor, called c-MET/HGFR has been well known for its role in the regulation of cell growth and invasion of tumor cells."
(Basically - this c-MET/HGFR gizmo on some of my cells might be the way in which my cells are being told to become cancerous. So... we're going to give this PF-02340166 a try and see if it can just shut that little gizmo off)
Also - I found out that the reason I have to come out to Boston for everything is not because I can't take the pills back home with me. It is because of the way clinical trials must be run. All of my blood draws and testing MUST be done out here at the facility which is administering the clinical trial. I will be sent home with pills that I have to take every day.
Tomorrow starting at 7:15am:
Blood draw, CT prep and scan, EKG. (To get baseline numbers before I start my drugs)
On a different note, I'm a little disappointed that my old body isn't waking up and kicking this thing square in the teeth. So I'm hoping that after treating my wonderful body to a little 'Legal Seafood' in the Prudential Building this evening, it appreciates the pampering and decides to help me out with this whole cancer thing. As someone recently reminded me, "over the course of 12 months, every cell in our body is replaced with a new one". With that said, I think I'll just go ahead and choose not to replace any of these cancer cells with anything but healthy ones.
It has been an incredible help being back in Waterloo around my family and some of my close friends. I was able to enjoy a Saturday lunch this past weekend with some of my family. That support and proximity to those important people has helped tremendously on the rough days.
I say this a lot, but I can't say it enough; all of the support is so very overwhelming and appreciated more than any of you will ever know. THANK YOU.
Protocol Title:
Phase 1 Safety, Pharmacokinetic and Pharmacodynamic Study of PF-02341066, A C-MET/HGFR Selective Tyrosine Kinase Inhibitor, Administered Orally to Patients with Advanced Cancer.
(So... the drug I am taking is made by Pfiezer and is called PF-02341066)
Another part of the consent form explains:
"Tumor growth is found to be largely controlled by tiny structures on the outer surface of tumor cells called growth factor receptors. A particular growth factor receptor, called c-MET/HGFR has been well known for its role in the regulation of cell growth and invasion of tumor cells."
(Basically - this c-MET/HGFR gizmo on some of my cells might be the way in which my cells are being told to become cancerous. So... we're going to give this PF-02340166 a try and see if it can just shut that little gizmo off)
Also - I found out that the reason I have to come out to Boston for everything is not because I can't take the pills back home with me. It is because of the way clinical trials must be run. All of my blood draws and testing MUST be done out here at the facility which is administering the clinical trial. I will be sent home with pills that I have to take every day.
Tomorrow starting at 7:15am:
Blood draw, CT prep and scan, EKG. (To get baseline numbers before I start my drugs)
On a different note, I'm a little disappointed that my old body isn't waking up and kicking this thing square in the teeth. So I'm hoping that after treating my wonderful body to a little 'Legal Seafood' in the Prudential Building this evening, it appreciates the pampering and decides to help me out with this whole cancer thing. As someone recently reminded me, "over the course of 12 months, every cell in our body is replaced with a new one". With that said, I think I'll just go ahead and choose not to replace any of these cancer cells with anything but healthy ones.
It has been an incredible help being back in Waterloo around my family and some of my close friends. I was able to enjoy a Saturday lunch this past weekend with some of my family. That support and proximity to those important people has helped tremendously on the rough days.
I say this a lot, but I can't say it enough; all of the support is so very overwhelming and appreciated more than any of you will ever know. THANK YOU.
Thursday, April 1, 2010
Schedule of First Treatment
I received 2 phone calls yesterday from Dana-Farber in Boston, each with some great news.
Call #1:
Insurance will be covering this Phase 1 clinical trial.
Call #2:
This call was from Kristen (The RN that will be handling most of the scheduling when it comes to the clinical trial).
My week will begin on Tuesday and end with a short appointment on Friday. I will receive the actual 'treatment' on Thursday.
Tues afternoon = Talk to the doc - sign the consent forms.
Wed morning = Lab work, CT scan, EKG
Thursday = More lab work and a biopsy in the morning, followed by a minimum of 8 hours in the Cancer Research Center (CRC) to receive the actual treatment and monitor me.
Friday morning = follow up appointment
Next Step:
Plane ticket will be booked today and I'll be in Boston before I know it.
Call #1:
Insurance will be covering this Phase 1 clinical trial.
Call #2:
This call was from Kristen (The RN that will be handling most of the scheduling when it comes to the clinical trial).
My week will begin on Tuesday and end with a short appointment on Friday. I will receive the actual 'treatment' on Thursday.
Tues afternoon = Talk to the doc - sign the consent forms.
Wed morning = Lab work, CT scan, EKG
Thursday = More lab work and a biopsy in the morning, followed by a minimum of 8 hours in the Cancer Research Center (CRC) to receive the actual treatment and monitor me.
Friday morning = follow up appointment
Next Step:
Plane ticket will be booked today and I'll be in Boston before I know it.
Saturday, March 27, 2010
Discomfort in chest and moving to Waterloo
Beginning around noon on Wednesday, March 24th my chest began to hurt slightly more than usual. The pain kept me from sleeping and continued through Thursday and into Friday morning. Upon contacting Dr. Milhem at the U of I, I was asked to come in right away for a new CT scan of my chest to ensure that a blood clot hadn't developed during my plane travel.
Fortunately, there are no blood clots. The pain is caused by the tumor in my chest having progressed into the cartilage between my sternum and my ribs. So, each time I breath deep or move my upper body at all, there's a spasm in my chest that's rather painful. I am now on morphine to keep me comfortable until I'm able to return to Boston.
Moving to Waterloo - I will be moving back to Waterloo until I beat this thing. John Deere was kind enough to allow me to work from the Waterloo Tractor Works facility. This will allow me to remain close to my family while I receive my treatments and will very much help the logistics portion of treatment.
Update from Boston:
On Friday, I also received a call from Boston letting me know that their lab confirmed my diagnosis (no surprise but it is a requirement for the clinical trial). The business department at Dana-Farber is now doing all of the behind-the-scenes work to ensure that my United Healthcare insurance covers a Phase 1 clinical trial.
Fortunately, there are no blood clots. The pain is caused by the tumor in my chest having progressed into the cartilage between my sternum and my ribs. So, each time I breath deep or move my upper body at all, there's a spasm in my chest that's rather painful. I am now on morphine to keep me comfortable until I'm able to return to Boston.
Moving to Waterloo - I will be moving back to Waterloo until I beat this thing. John Deere was kind enough to allow me to work from the Waterloo Tractor Works facility. This will allow me to remain close to my family while I receive my treatments and will very much help the logistics portion of treatment.
Update from Boston:
On Friday, I also received a call from Boston letting me know that their lab confirmed my diagnosis (no surprise but it is a requirement for the clinical trial). The business department at Dana-Farber is now doing all of the behind-the-scenes work to ensure that my United Healthcare insurance covers a Phase 1 clinical trial.
Tuesday, March 23, 2010
First visit to Dana-Farber
2pm today:
Met with Dr. Burtynski and others. Today was basically a consultation with Dr. Butrynski and a session to review what will be involved with the treatments in Boston. When treatments begin, they will have to be administered in Boston because of all the regulations regarding clinical trials. My first treatment should begin in approximately 2 weeks with treatments to follow every two weeks for two months after that. Then the visits to Boston should be once a month after that.
The technical stuff:
The drug is PF-02341066 and has seen some success in patients with certain sarcomas of the lungs.
Next Step:
I will be returning to Waterloo late tomorrow (24th) and returning to work until I hear from Dana-Farber. The exact date of the first treatment will be ironed out within the next week with the first treatment to begin in about 2 weeks. So... hurry up and wait.
Met with Dr. Burtynski and others. Today was basically a consultation with Dr. Butrynski and a session to review what will be involved with the treatments in Boston. When treatments begin, they will have to be administered in Boston because of all the regulations regarding clinical trials. My first treatment should begin in approximately 2 weeks with treatments to follow every two weeks for two months after that. Then the visits to Boston should be once a month after that.
The technical stuff:
The drug is PF-02341066 and has seen some success in patients with certain sarcomas of the lungs.
Next Step:
I will be returning to Waterloo late tomorrow (24th) and returning to work until I hear from Dana-Farber. The exact date of the first treatment will be ironed out within the next week with the first treatment to begin in about 2 weeks. So... hurry up and wait.
Saturday, March 20, 2010
Heading to Boston
I will be heading to Dana-Farber in Boston on Monday, March 22. I have an appointment with Dr. Butrynski at 2pm on Tuesday. This is basically a consult. They will let me know what the clinical trial is all about and how much travel will be involved. We hope to begin my treatment with this visit but we'll see.
Dr. Butrynski specializes in rare forms of cancer and has experience with clear cell sarcoma in particular.
Right now, I feel fantastic most days as long as I get plenty of rest and don't try to over do it with anything.
Next Step: Visit bean-town and begin treatment of some kind.
Meanwhile: I cannot say enough how very appreciative I am of all of the support, from family and friends to co-workers. It has been truly overwhelming and very humbling. Thank you all, you will never know how much it means to me.
Dr. Butrynski specializes in rare forms of cancer and has experience with clear cell sarcoma in particular.
Right now, I feel fantastic most days as long as I get plenty of rest and don't try to over do it with anything.
Next Step: Visit bean-town and begin treatment of some kind.
Meanwhile: I cannot say enough how very appreciative I am of all of the support, from family and friends to co-workers. It has been truly overwhelming and very humbling. Thank you all, you will never know how much it means to me.
Saturday, March 13, 2010
News from the U of I Hospitals and Clinics
First and foremost, I am still going to beat this thing. No matter what the physicians say.
Friday, March 12th:
Met with Dr. Milhem.
Friday, March 12th:
Met with Dr. Milhem.
- Troubling news: Per Dr. Milhem, due to level of progression of this particular type of cancer, we will not be able to cure me of this desease. At this point, it will be terminal but we do not know when. Current estimations (very vague) are 3-4 years. Dr. Milhem also asked if I would be open to options other than chemotherapy as it is only known to slow this cancer about 5% of the time.
- MRI of my brain: preliminary results indicate no spreading of the cancer into my brain.
- Good news: Dr. Milhem is aware of a clinical trial in Boston, MA at the Dana-Farber Cancer Institute that may have success rates in slowing this type of cancer in the 20-30% range.
- In addition to this trial, there are 1-2 other clinical trials that may be in my future to see what we can do.
- In general: my body's immune system needs to wake up. Apparently, my immune system can fight this thing, IF it begins to recognize it as dangerous. For now, the cancer is fooling my immune system into thinking that it is posing no threat.
Hope* In 2% of clear cell sarcoma cases, the body suddenly and inexplicably "wake's up" and begins fighting back and a remission of the cancer takes place. I fully intend to add to this 2% and be another medical miracle.
For now, please keep me in your thoughts and prayers.
Next Step: Dr. Milhem is in communication with Dana-Farber to get the clinical trial treatment started ASAP. We hope this starts early next week. Until then... I'm enjoying my weekend and my time with Ashley.
Thank you all.
Monday, March 8, 2010
Dr. Scott Okuno from Mayo Clinic will be directing my care (what drugs I get, how much and how often). Dr. Mohammed Milhem at the Univeristy of Iowa Hospitals and Clinics will be the on-site set of eyes and ears and will work in colaboration with Mayo.
Next Step: I have an initial consultation with Dr. Milhem on Friday, March 12th at 10am. Hopefully my biopsy can be completed at that time as well and we will discuss chemotherapy treatment initiation at that time.
Next Step: I have an initial consultation with Dr. Milhem on Friday, March 12th at 10am. Hopefully my biopsy can be completed at that time as well and we will discuss chemotherapy treatment initiation at that time.
Saturday, March 6, 2010
On February 11th, 2010, I was diagnosed with 'clear cell sarcoma' a type of very rare soft tissue cancer. On March 4th, Mayo Medical Clinic confirmed the diagnosis. This is a summary of what has happened so far. I hope it is informative without being overwhelming.
Late November 2009:
I noticed a small lump on my left heel. Nothing major. Consistent with something you would see from wearing a bad pair of shoes.
December 2009:
Gave it a few weeks hoping I had bumped it without noticing or that it was some other small thing. Around Christmas time it had not gone away and had grown significantly.
January 2010:
An additional lump had developed in my upper left thigh consistent with an inflamed lymph node (I thought).
Antibiotics were prescribed and additional testing was ordered.
Results: lump in thigh was said to be a blood clot (later known to be incorrect).
February 2010:
Late November 2009:
I noticed a small lump on my left heel. Nothing major. Consistent with something you would see from wearing a bad pair of shoes.
December 2009:
Gave it a few weeks hoping I had bumped it without noticing or that it was some other small thing. Around Christmas time it had not gone away and had grown significantly.
January 2010:
An additional lump had developed in my upper left thigh consistent with an inflamed lymph node (I thought).
Antibiotics were prescribed and additional testing was ordered.
Results: lump in thigh was said to be a blood clot (later known to be incorrect).
February 2010:
- 9th - surgery to excise the tissue from my left foot.
- 11th - Clear Cell Sarcoma Diagnosis
- 26th - First visit to Mayo Clinic
March 2010:
- 3rd - PET/CT testing at Mayo Clinic
- 4th - Informed that the cancer has spread to lymph nodes in my upper left leg and hip as well as my sternum.
- 5th - Consultation with Dr. Okuno - a medical oncologist @ Mayo Clinic. Recommendations of aggressive chemotherapy treatment.
Subscribe to:
Posts (Atom)