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.

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

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.