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.
Friday, May 28, 2010
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.
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