7/30/11-- Wrong Turn

This entire journey over the last two and a half years has been one of incredible uncertainty. The entire time though we always thought we knew what could or would happen if things started to take a turn towards the wrong direction. We always thought things would start spreading to my lungs and the tumors on my liver would continue to grow and eventually cause the organ to stop functioning properly. Well, a week ago, cancer reminded me that it does not follow any sort of plan, it does not try to be predictable, and just when you think you have it figured out, you don’t. My world was turned upside down again about a week ago by some developments that not only caught me completely off guard, but have shaken me to my very core. I was just about recovered from my SIRT treatment and was beginning to feel better with the occasional bouts of nausea. I was experiencing a lot of pain and a lot of fatigue however, and I was keeping up with it for a time with my medications, but it eventually caught up to me and knocked me on my ass. Last Friday I finally got out of the house to grab some lunch and came home very tired and my back was pretty sore which was expected because it was the most I had exerted myself in some time. As the night wore on, however, I noticed that my back was starting to get even stiffer and I was in excruciating pain at about midnight. Saturday morning, my father had to run to get my pain prescription filled and the pain was so horrible I tried laying on the floor to see if the flat surface would help. The pain was so bad I really hadn’t eaten much and running on a stomach full of oxycodone meant I was pretty nauseous and needed to throw up. After struggling to stand up, I made it to the bathroom and did my thing. My dad came into the bathroom and I experienced something very scary, I was not able to stand up from a seated position. I did not have the strength and it hurt too much to do something so simple. That was the final straw, it was time to call the doctor. The doctor I spoke to on the phone made me realize that something very serious could be wrong if my spine was out of whack so I told my parents it was time to head into the urgent care center in the city.

We got to the city and I spent a few hours going back and forth between hydration fluids as well as morphine for the pain. I ended up getting an MRI of my spine done and it revealed some inflammation around my spine which is related to the cancer. The main concern here is that the inflammation can affect the spinal cord and eventually cause either the disks or the bones to contract and cause paralysis. The doctors decided to admit me to the hospital and begin treating me with powerful steroids as well as radiation to my lower back. The bad news didn’t end here however…

Since the pain was in my spine, it is protocol to also do an MRI on the brain since it’s all related. The MRI revealed a very small 7mm lesion on my brain which has not affected my function at all which is a very good thing. They are still deciding if they want to treat the lesion with radiation to the entire brain or a very directed method which is very powerful. The neurologists still have time to decide what the course of action will be for that because they caught it so early. One more test we are waiting on is the result from the spinal tap…which is not a fun procedure even though they numb you, try to imagine a giant needle being shoved into your spine. I honestly forget what those results will even tell us, I just know that I have to do at least ten rounds of radiation on my spine and will be in the hospital for at least another week. I’m a bit out of it because of all the pain medications they’ve been giving me, but I need them. The pain in my back gets unbearable without them. All in all I’m not sure what is going to happen. I just know that I’m incredibly lucky to have such supportive friends and family and there’s no way I’d even come close to holding it together without them. I’m just taking it one day at a time and trying to stay as active as I can by walking around the halls and talking to everyone. We’ll see what happens…sure I’m scared, and sure I’m still confident that I can and will come out on top of this thing, but this is not how I expected anything to go. One day at a time…I’m sorry I’m not super insightful or very descriptive for this post, but it’s tough to stay awake and stay focused on things for very long. Hopefully I’ll have some better news to report next time, but being relentless means sustaining your efforts when it is understandable to give up…just can’t give in…one day at a time.

7/12/11 SIRT Part 3

Leading up to this last of the SIRT treatments I was feeling terrible...it was the worst I've been in a while. Everything was starting to catch up with me. I was undergoing chemotherapy, external radiation on my rib, and about to repeat an internal radiation procedure which I had almost six weeks ago. The radiation on the rib really threw me for a loop and made me incredibly sick. I couldn't keep any food or liquids down for about two days. At that point the dry-heaving was so miserable I couldn't even drive my self to my appointment and my mother had to come home early from work so I could receive my radiation as well as some hydration fluids through an IV that the doctors thought were a good idea. It's a good thing I received those fluids because I was in pretty rough shape heading into that weekend and I most likely would have wound up in the hospital at some point. But I survived that weekend and had my last radiation session on my rib which is thankfully starting to feel a bit better. I'll just have to take it one day at a time there because I can't forget I still fractured the bone a while back and it needs to heal at some point.

Each phase of the SIRT treatment has been different in terms of what I experienced, what I was awake for, what I felt, etc. This one was the absolute worst of the three. Things were running a bit behind that day in the surgery center so I could tell I'd have to wait a bit longer which wasn't much fun since I hadn't had anything to eat or drink in over 12 hours. The wait was uncomfortable because I was still in some pain from my rib and I elected not to bring any pain medicine with me for the trip like an idiot. Anyways, once I was back and getting all set up for the surgery I was brought into the room and everyone was already talking about having to stay late because their first surgery went long. I completely trust the doctors and surgeons I see, but it's not always comforting witnessing everyone being asked if they could stay a bit late if mine goes overtime. Oh well...we were underway...bring on the anesthesia! Wait, no anesthesia? What's going on here? I don't know if this was done in order to save time or if I just got lucky my second time and my dosage of drugs was high enough to keep me asleep the whole time, but I was wide awake for too much than I'd like to recall.

The nurse affirmed that she was in fact serious that the folley would be inserted as I was awake and being prepped to go. I won't go into detail but my instructions were to "Clench your toes and hands." Awesome. After I was put on the operating table my arms and legs were strapped down accordingly and I was really hoping this would be the part where I take my nap and wake up in recovery...wrong again! "Ok this should be the worst part," a voice said as the needle pierced the skin near my groin to deliver its numbing agent. Before the area was completely numb the incision was made and I winced at the sting. I did finally become a bit groggy during parts of the procedure, but there were times I was able to sing along to the songs playing over the speakers, inform the surgeons who was singing a particular song they couldn't figure out, and at one point hear my surgeon tell the nurse to "Give him something more because he is completely awake." I wish my adventure ended there, but that would be letting me off the hook too easily. When it came time to inject the radioactive material I had no idea that I was about to experience some of the worst pain I've ever felt, and it was a good thing my arms and legs were strapped down because I just wanted to get the hell out of there. Each push of the material felt like someone had a knife inside my mid-section and was slowly turning it. I finally let out an "Ow" loud enough to catch their attention. It didn't take the nurse long to administer more sedatives once she saw the agony on my face. That's the last part of the procedure that I remember...overall it sucked and I'm glad I won't have to be doing that again anytime soon.

I've been recovering pretty well so far from the procedure...they were able to get 30% more of the radiation directly into the liver which is very good. I've just been very tired and the steroids they have me on not only bring me back to the acne filled days of high school, but make me wired at odd hours of the night. I fell asleep at 7am today and woke up at about 1pm so hopefully I'll be able to figure that out in the next few days. Either way, the nausea hasn't been too bad and I've been able to relax without having anything to worry about. Thanks to my family, my appetite has been pretty good so far and they've taken it upon themselves to make sure I'm eating healthier and doing all we can to help me gain some strength and a few pounds. That's about it for now though...nothing else too exciting going on...one day at a time.

7/3/11 Almost

Where have I been? Honestly, I’m not even sure. It’s been a while since I’ve written anything and I apologize, but the spark was gone…I had nothing to write about. My life had become so mundane that my routine was literally driving me mad. I won’t go through all the details, but there are some things that have happened and are about to happen which are pretty important. The first part of SIRT went just as planned and the recovery for that was not bad at all, but my nagging rib injury came back…this time however, it was not a simple fix with some relaxation. Around the area where the rib was hurting/fractured, there began to form some inflammation as well as something harder. Scans revealed that that there is something there behind all the inflammation that is not letting my bone heal properly which is why I keep reinjuring it doing stupid things. They haven’t said what the growth is, whether it is cancerous or not, in fact, at this point it doesn’t really matter…it just has to go. So the solution has been five treatments with radiation directly through the skin and into the area. That’s what I’ve been doing the last week and the rib hurts like hell right now, but they said it would get worse before it started to feel better. Oh well, at least I know it’s working then. Hopefully that will get resolved quickly because I really want to play some golf and get back on my motorcycle. With all of this going on it seems like I’m stuck in my own world while everyone else is living their lives. A very frustrating feeling indeed. My oncologist also started me on chemo pills called Xeloda which is taken for two weeks and then I get a week off. Truthfully, this Xeloda medicine is our last try before we go to the clinical trials. If the SIRT can keep my liver under control and the Xeloda can keep my lungs and anywhere else under control, then we can buy more time…however that is a big if. It’s another episode of the waiting game. A few months on the Xeloda and then a scan. I know the SIRT will do its job…I need this to work. My last installment of the SIRT procedure is this Wednesday and hopefully the recovery goes smoothly. The main thing is I need to gain weight. I’ve lost too much weight and am now down to about 150 lbs. I just need to get my energy back so I can start doing more activities that will enable me to grow stronger. Unfortunately, moving from my bed to the couch and possibly out to subway for lunch doesn’t live up to how I used to workout.

I’ve been absolutely exhausted and in a lot of pain for the last month. The pain in my rib has come and gone, sometimes not so bad, but sometimes it’s almost unbearable. The doctors told me I’d be very tired, but I had no idea what real fatigue felt like until this summer. I’ll easily sleep more than twelve hours, stay awake for eight, then go right back to sleep. It’s not as fun and relaxing as it sounds. I’m too exhausted to go out and do much of anything. I walk as much as I can around my neighborhood, and even though progress has been slow, I keep at it. I haven’t been myself…I haven’t answered every alert on my phone…some messages and emails and other things have fallen through the cracks and for that I apologize. I’ve needed this month to focus on myself and to try to recover and deal with what has been some of the hardest times since I first became sick in 2009. One more hump in the road to get over this week then I can fully concentrate on recovering. Once August rolls around I’ll be close to my normal self again. I just have to take each day as it comes and hope that tomorrow is better.