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.

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.

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.

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)

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.

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)

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

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.