Wednesday, July 28, 2010

Chemo Throws a Surprise Party

Despite what you are about to read regarding my first dance with chemo, I am still excited that I have begun treatment. Everybody knows that chemo has side effects, but I personally should always look at the “rare” section for possible adverse reactions. For some reason, I get the good stuff. My wife jokes that I’m “one of a kind.” I am not naive, so I knew I wasn’t going to be feeling so hot for awhile; however, I experienced a few things that I will never forget, but wish had never happened. In the spirit of disclosing all pertinent facts, I will take you through my last couple of days.

Thursday morning started out pretty normal; breakfast, shower, a few minutes with the dog, and a solid 30 minutes watching baby Einstein with my precious little man. Then I got to mosey on over to the fertility center for my second “deposit” of the week. That’s right. Just in case the chemo or surgery messes with anything, my wife and I decided to have some of my men frozen. Should you or a loved one ever go through this, don’t forget this factor, it’s can sometimes be part of the process. Then I headed back to the house, scooped the wife, and took off for the cancer pavilion. Things were moving along smoothly and pretty much without a hiccup. Actually, after anxiously waiting for what seemed like two days (a half hour), I miraculously scored my own private room with a bed. Check me out! My nurse was great, too. I don’t know what I thought the moment was going to be like when the meds got started, but it did seem a bit uneventful. After I got comfortable in my bed and got the TV tuned in to SportsCenter, the nurse came in with the IV stand and the drugs. All the drugs cannot be given at the same time, so the sequencing is explained to us again. The shirt comes off, a two inch needle is jammed into my port, and the chemo starts to flow. Four and half hours roll by and we don’t experience a single problem. I actually took a little nap and the wife was able to spend some time catching up on emails, phone calls, and of course FaceBook. After all the IV bags were complete, they set me up with my super stylish chemo pump. This pump, still connected to the port in my chest, allows me to take one of the drugs home as it will dispense a small amount of meds continuously. In fact, it was about every few minutes and it sounded a bit like an old Polaroid camera, not really an issue until it was time to sleep. To transport this high dollar piece of medical equipment, I got a $1 black fanny pack to carry it in, don’t be jealous. All in all, it was a good day and the only thing I felt was exhaustion.

Friday comes and goes with very little to discuss besides some pretty nasty nausea and a little fatigue. Saturday morning and we’re back to the cancer center to return the pump and sweet fanny pack. Needle comes out of my chest, and we’re heading home completely unaware of what is about to happen over the next 24 hours. Here is where the la-tee-da story starts to get interesting. We arrive home from the cancer center at about 10am and it is getting close to Hudson’s nap time. As he’s sleeping, the wife and I to lay in bed and chat for a bit. 11:00am, Hudson needs some coaxing to get back to sleep, so I zip upstairs to grab a drink. 11:15am finds us having a nice relaxing talk again, but then 11:30am… I am hit in the chest. Not a little hit, but more like a sledge hammer crashing into me at full speed. At first I thought I drank my drink too fast, but it wasn’t just a one-and-done thing. The pain persisted as if somebody decided to let their pet elephant park it right on my chest. I had no idea what was happening, so I rolled around on the floor in agony hoping it would just go away. The wife got real concerned, so the call to 911 went out. Rescue workers showed up and the next thing I know, I got an oxygen tube shoved up my nose and my mid-section is smacked full of these sticker things with little silver buttons on them, like those on a baby’s onesie. Wires are clamped to them hooking me up to a heart EKG machine and I am being whisked to the hospital via ambulance. A few minutes into the ride the pain subsides and I start to feel like a big boob and think we made a huge deal out of nothing, but since we were already on the way to the hospital, a few tests wouldn’t be a bad idea.

The back doors to the ambulance open up and I see the wife standing there. I had no idea she was riding shotgun, so I got a little emotional as they wheeled me into the ER. Once again, got my own private room in the back because chemo makes me more susceptible to infections, germs, etc, so that was nice. Several people came and went, trying to figure out what had happened. At this point, I had what seemed to be another 50 wires hooked up to me and I am feeling a bit like I’m trapped underwater in a big fishing net. A second EKG was taken and came out completely normal. All vitals looked great, but a chest CT is still performed.

I get back from the scan, it’s happening again, the sledge hammer and Dumbo are back. I grab my chest and the wife darts off to get the nurse, who pages the doctor, but apparently feels that eating her muffin takes precedence over responding immediately herself. My blood pressure and heart rate were threw the roof on the monitors. When they finally come in and find me shaking uncontrollably from the pain, they tell me to lay completely still, not an easy task at all, so they can get another EKG reading. The doc says it appears as if I might be having a heart attack, so they grab me and my bed and literally start running me up for a cardiac catheterization. We are cruising through the hospital wings and it seems that just as everybody pops their head around to see what the commossion is, they have to dive out of the way. This is happening just like in the movies. For the first time in this whole process I get scared and start to wonder if I will ever see my wife or child smile again. Wow, just thinking about that long enough to type it, brings a tear to my eye.

In the operating room I am injected with a local anesthetic, although it doesn’t seem like they wait for it to start working before they tap into my femoral artery and thread a catheter up into the areas around my heart. The nurse in the OR is telling me lay completely still and instructing me not to lift my head up for any reason. I swear, I could not grasp this concept and every few seconds the nurse is smacking me on the forehead telling me to keep my head down. The procedure is over pretty quickly I think, just in time for the local anesthetic to really start working.

I am taken to a recovery room and again instructed not to move or lift my head or I could cause enough internal pressure to blow the plug in my leg. Four hours of lying perfectly still on my back was not a good thing for ol’ Trudy, but I made it through. We come to find out that I was having spasms, more specifically called cardiac vasoconstriction and it was hindering the blood flow to my heart. A rare side effect of probably THE most important chemo drug that I’m taking for colon cancer. They admit me and keep me overnight for observation.

When I wake up the next morning, I think the worst is behind me and that I am in the clear, so I start preparing myself to go home. As I go to sit down, I feel an explosion in my leg, almost like a cork popping free from a champagne bottle. The pain is so intense and immediate. I look down at the incision sight and this thing is throbbing with every beat of my heart and is growing larger by the second. It looked like an alien was hatching out of my leg. I call for the nurses and luckily they respond very quickly. They react without hesitation and the one nurse places the palm of her hand over my incision and then presses down with all of her weight. As one nurse is keeping my leg from filling up with blood, the other nurse injects me with as much pain medicine as she can. At this point I am told that I am not looking so great and that the grayish-green tone to my skin is a good indicator that I might lose my breakfast soon. To avoid this, they tilt my bed back (head low, feet high) right as my wife walks in prepared to take me home. The pain starts to let off a bit and the nurse explains to us that I have developed a hematoma and that she must hold pressure for 30 minutes. What a crazy unexpected event, but needless to say, I’m there for another night.

It’s Monday and now I’m home. The “normal” side effects of the chemo meds are setting in. Nausea, fatigue, and just complete icky-ness. My oncologist will consult with his colleagues to determine if I should try a new cocktail of meds because of my pseudo heart attacks. Through this process I know I will experience many highs and lows, but I trust that God never gives us more than we can handle.

Wednesday, July 21, 2010

Chemo Eve

Choosing the right doctors in a situation like this is absolutely critical. It may literally be a life and death decision. I am so blessed to have the supporting cast that I do, making it possible to meet with a handful of doctors before making my choices final. Credentials were not the only things we looked for during our search. I am sure all the doctors we met were extremely intelligent and fully capable of providing us with quality health care. That is not enough, though. If somebody is going to be pumping my veins full of poison, blasting my body with radiation, or slicing my abdomen into two halves, I want to make sure that I get a great vibe from them as a person, not only as a physician. I was not only searching for somebody that was completely confident in their abilities, but also somebody who was completely confident that they could return me back to family with a future. If I am ever in a position to give advice to somebody, I would tell them that they need to meet with as many doctors as it takes until they are completely comfortable. This is your life, your body, and nobody else should be making these choices for you, except maybe your wife.

Our team is selected at multiple locations and we are set to begin our journey. On Monday July 19th, I had a port surgically implanted in my chest. This port looks like a miniature computer mouse. The base of the device is about the size of a water bottle cap. From this base, there is about 10 inches of very thin tubing. The port was implanted about two inches under my right collar bone right under the skin. The tubing runs up over my collar bone and into my neck. It is fed directly into my jugular vein and is threaded down several inches where is rests just above my heart. The port acts as the primary access point for the chemo to be injected and also keeps the nurses from having to stick me in the arms every time they need blood.

Today is Wednesday July 21st and time couldn’t be moving any slower. I feel like I am six years old again and tomorrow is Christmas day. I am so anxious for chemo to start, I wonder if I will get any sleep tonight. The doctors have spoken to me about how I may feel after the treatment, but of course everybody reacts a little differently. The uncertainty is a little freaky, but I am still so excited to get these treatments underway. If Trudy responds well to the chemo, not only will the disease become more manageable and the surgeries become less invasive, but most importantly at this moment, the reduction in overall size should help greatly in terms of pain relief. Currently, as Trudy is all large and in charge, she is compressing on several nerve endings. For anybody who has ever had any sort of nerve pain, you know just how excruciating it is. Too bad I can’t inject Jim Beam directly into my port tonight, I am sure that would help me get some sleep.

The battle of my life begins tomorrow. There is message that has a tremendous amount of meaning to me, and I have been clinging to it since I originally heard the news. It comes from the “Jimmy V acceptance speech from the ESPY awards,” which I highly encourage you to read. I actually can’t even speak the words without getting emotional. I am adopting it as my own and will live by the message not only through this fight, but for the rest of my life.

don't give up...DON'T EVER GIVE UP!

Tuesday, July 20, 2010

How bad is it?

One of the things that I have noticed over the past couple of months having all these fancy tests done on these big expensive pieces of machinery is that the exam rooms are all freezing cold. To combat the frigid air in the rooms, the facilities offer you these heated blankets. These things are awesome. If you ever have to go into the hospital for any reason and they offer you one of these blankets, take it or you will regret it. It doesn’t matter if you are cold or not, these things have special powers or something. You feel better almost instantaneously.

I am not sure what is worse, though: the preparation or the tests themselves. I have always been a big eater and skipping a meal just wasn’t something that I ever did. In order for some of these tests to be accurate, the instructions state that I wasn’t to eat any solid foods for several hours prior to the procedure, usually 8 to 12 hours. I wasn’t allowed to have anything in my stomach or my colon. They didn’t want anything trying to push the scopes back out, if you know what I mean.

Living in a house where gourmet meals are prepared nightly for dinner, the sweet aroma of food fills the air, making it that much harder for me to follow instructions. Breakfast hours are typically accompanied by some sweet smells as well. It’s not like I couldn’t fill up on chicken broth and liquid jello, but you can image how unsatisfying that would be when you are sitting at the same table as somebody with a plate full of eggs, bacon, buttermilk biscuits with homemade jam, and fresh fruit. There was also no hiding from the scent of freshly brewed French vanilla coffee.

The week is moving pretty fast and I am bouncing from one exam room to the next. Each test has its own specific purpose, which is to give us detailed information about the size and severity of Trudy. After a colonoscopy followed by an ultrasound as well as a pelvic MRI, Friday morning’s PET CT was the final test. Not expecting to hear the result until after the weekend, surprisingly the call comes in around 10pm Friday evening. Turns out, Trudy is quite the aggressive little tumor. I am told that I have stage 4 colorectal cancer and that the tumor has made its way all the way through the tissue of the colon and is starting to effect the muscles on the pelvic wall. As if that wasn’t enough, greedy little Trudy has also made her way into the lymph nodes of the pelvis and she has also traveled up into the liver. Somewhere along the way we determined the definition of Trudy is “strong spear.” I’ll say…

As you might expect, this news was pretty devastating for my family and me to hear. Several hugs, a few tears, and a good night’s sleep later, I wake up with that same unbelievable inner peace that I experience when I was first diagnosed with cancer. This battle is going to be a lot tougher than originally expected, but I am ready for the challenge. The bigger the battle, the bigger the victory, the bigger the celebration. Now we must start meeting doctors and select the team that is going to be managing each phase of this treatment. Right now we are looking at a four stage regimen that should take somewhere in the ballpark of 9 months: 1) chemo for 2 months 2) chemo with radiation for 6 weeks, followed by 6 weeks of “cool off” time 3) multiple surgeries with approx 12 weeks of recovery 4) 4-8 weeks of chemo. Does anybody know if Santa makes trips to the hospital?

Sunday, July 18, 2010

From The Beginning...

How does a small pain in the ass turn into a life threatening disease? My answer to you is, I don’t know. Present day we know exactly what I am dealing with; however, I wanted to take everybody back to the beginning, back when Trudy was in hiding. Trudy is the name my wife and I came up with for the tumor that has been causing me so many problems. We felt a female name was more suiting given the fact that she really is a bitch.

Late February, early March I started having minor discomfort in my lower abdominal and around my tailbone every night when I would start to relax for the evening. Given the fact that I was working out frequently and had a pretty laborious job, I justified the pain, assuming it was just a small muscle pull. As the weeks passed, the discomfort started becoming pain that was limiting what I was able to do. After a “small push” from the wife, I decided to go see my family doctor and get things checked out. As I expected, the examination was pretty routine, and nobody was thinking that this pain was anything more than possibly a small hemorrhoid. After taking the hemorrhoid meds for a few weeks, I ended up right back where I started: in pain and in the doctor’s office. This time we started treating for a possible infection. Once again, I completed the course of medication that now puts us around the beginning of May and as you may suspect, the pain is getting worse and we are no closer to solving the mystery.

Now it is time for the fun stuff. At this point I have been referred to a surgeon who brings me in for a routine exam, yet again. Finally, someone wants to do a colonoscopy! These things are not pleasant at all, but at this point the pain was affecting every aspect of my life and I was willing to do anything to find some relief. I remember telling myself going into the procedure, “ I don’t care what he finds, as long as he finds something so we can begin treatment.” My prayers were answered on May 21st and the doctor tells me he has found some masses in my colon and that he believes that I have Inflamed Bowel Disease (IBD), leaning toward Ulcerative Colitis. Of course, I was hoping that what he found was something very simple, but either way, at least now we knew what it was and we could start treating it. In case you’re wondering, biopsies were taken of the masses, but the results showed no signs of cancer. In our minds, we were dealing with a disease that is more of a nuisance rather than something that is life threatening. With this diagnosis, we decided things were going to be just fine, so my wife packed up with the baby and moved to Michigan as planned the very next day, not because we found out I was sick.

About a week later, times are really getting tough for me and I am handling this on my own. I couldn’t walk without pain, I couldn’t sit without pain, I couldn’t even use the bathroom without pain (number 1 or number 2). The meds aren’t working and my doctor’s response is simply to give it some more time. To avoid sounding like a big sissy, I continued working and just dealt with it and got through the days the best way that I could. The last week in May I started noticing a hard bump on my butt. No, it wasn’t growing on the outside of the skin, but the kind of bump you feel pushing out from the inside. This thing started out painful and seemingly got worse by the minute. I could literally feel this thing growing significantly larger with each touch. I haven’t been able to sit down for three days at this point and kneeling on all fours was about the only position I could find any relief in. I wasn’t sleeping at all and I was actually scared to eat because that inevitably meant I would have to use the bathroom some hours later. When I needed to urinate I had to take a shower in order to go. The mass was so big that it was messing with my bladder and pretty much any other structure from the hips down. There is now a grapefruit in my buttcheek, so I finally decide to go to the emergency room, again with a “small nudge” from my wife. Looking back on the situation, there is no way I should have driven myself to the hospital, but luckily I got there without causing an accident. Doctors take one look at my rump and immediately order me to be admitted, and an operating room is booked.

The wifey hops back on a plane the second she hears the news and is there to take care of her man as he comes out of surgery. I don’t recall how long the surgery was, but I do remember about two seconds before I went under, and that feeling was awesome. The surgery consisted of a single two inch incision in close proximity to my “backdoor”. The mass turned out to be a gigantic abscess that was drained and the void was filled with packing gauze. So I go into the OR with a grapefruit-sized infection and I come out with a grapefruit-sized ball of cotton stuck in my wound. This type of wound needs to heal from the inside out, therefore the incision was not stitched shut.

Try to image having a wide open wound on your butt. Yeah, just the thought of it is quite strange. You could literally see the muscles and soft tissues of my rear end by looking into this incision. My wife, who agreed to be with me through sickness and in health, was given some instructions that most may see as rather strange too. Twice a day she was to pull out all the packing material in the wound and replace it with fresh gauze. I don’t feel as if I even need to say this, but this was an extremely uncomfortable procedure. I think pulling out the old stuff was the worst part of it; however, it wasn’t very pleasant feeling her push this stuff back inside my open wound with a stick of wood that resembled a giant Q-tip. I do feel a little of relief at this point now that the abscess is gone, but we still haven’t addressed the original problem. Again, I am ordered to keep taking the meds for IBD and be patient.

When I get home from the hospital, my wife and a great group of friends are working diligently in the blistering sun to pack up all of our belongings into a moving truck so that I could move to Michigan and be with my family again. After a couple days of packing, it is time to hit the open road. As you might expect, sitting for me is still a huge problem. Not only from the IBD, but also from this incision on my rear. To account for this issue, I create a bed in the back of the Acadia by placing a piece of plywood wrapped in blankets across the center row bucket seats to create a bed of sorts for the dog and myself. After a few hours of trying to sit in the front with my wife while the hound gets the pseudo-bed in the back, it’s time to switch. Now the hound is riding shotgun and I am laying in the fetal position across the two bucket seats trying to find some comfort so we wouldn’t have to stop every 20 minutes. This game of musical chairs continues for the full 18 hours of drive time from Florida to Michigan.

Finally we arrive in Michigan and the first thing we do is see a specialist. Keep in mind we are still under the assumption that I have Ulcerative Colitis (one of the two IBD diseases). The doctor here reviews the report and the test results from the doctor in Florida. Based on that information and how I am describing my symptoms, the Michigan doctor changes a few things with the meds, changes the diagnosis to Crohn’s Disease because of the abscess, but ultimately keeps treating me for IBD. More time goes by and I am not feeling any better at all, in fact things are still getting worse. My tailbone feels like it being crushed in a vice and any movement whatsoever is terribly painful. I describe what I am going through as suffering. At times the pain was so intense I would start shaking uncontrollably until I would literally pass out. After a few more calls and visits to the doctor she puts me back in the hospital to beef up my meds with some crazy strong IV treatments. Six fun-filled days (one of which was my very first Father’s Day) of laying in a bed and watching Fresh Prince and Reba re-runs, and one more small surgical procedure to remove another abscess, I am sent home with hopes that I am on the mend and will be as good as new in a few days.

June 29th, I am in so much pain that I can’t stand it and my family can’t watch me suffer any longer. I head back into the doctor’s office and politely demand that we start from square one and redo the tests and examinations that were done in Florida. At this point, I have been in constant pain, mostly horrible pain. I can’t eat, sleep, go to bathroom, or do anything. I am down 40 pounds from March and I am on the verge of a breakdown because I have no idea what is wrong with me, but I know something isn’t right. Doc agrees to start from scratch and we go back to the old scope in the rear end. It doesn’t take long before we see what is causing so much pain. A tumor, that will later be known as Trudy, is found in the lowest part of my colon (my rectum). A biopsy is done to confirm suspicion, but it is safe to say that the past four months have been a waste of time and that we have been treating a disease that I clearly don’t have. After the examination is completed, the doctor asks me to come up to her office. I wasn’t sure what she was going to say, but I knew I wasn’t going to be good based on the look on her face and the tone in her voice. After a few minutes of fancy doctor talk, the verbiage that I could understand comes out. She says she is very concerned and believes that the mass she found is cancerous and that the location of the tumor was not favorable in terms of saving my rectum. Again, not completely sure what all this means, but she did state that removing the rectum would require a colostomy bag. June 30th (my mother-in-law’s 60th birthday), the pathology report confirms the mass is cancer. Trudy the Intruder is now a reality, not just a suspicion, and certainly not a joke.

After crying with the family for a few hours, and putting things into perspective, I made the decision to remain positive, lean on my faith, and not let this diagnosis touch my spirit and mind. I know that feeling sorry for myself and wondering “why me” wasn’t go to change anything. The very next morning after hearing that I have colorectal cancer, I had a strange inner peace about the situation and I knew that I was never going to give up or let Trudy take control of my life. After spreading the news to family and friends, the prayers and support started flooding in. The power of prayer is amazing and I become stronger with each and every message I receive. The next week, a series of tests are scheduled and we will soon know exactly how big of a pain in the ass this Trudy is going to be.