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.
Friday, June 25, 2010
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)
Subscribe to:
Posts (Atom)