Part 13: The 2nd Coming (Recurrence)

            So the cancer came back again. My “break” which was filled with pericarditis and hernia surgery turned out to not be such a break, and now while I was recovering from both of those, I had my second recurrence. I was immediately put back on full chemo- Ironotecan with Cyramza for three months. My schedule of treatment was three weeks on and then one week off. It sucked! What sucked even more was that it wasn’t working. My CEA was steadily climbing; at the end of May 2017 it was 8.2, and by August 16^th it had risen to 46.9. My number hadn’t been that high since June 2014! With the CEA trending upward it was clear that my cancer had grown resistant to the Cyramza, so my oncologist changed my cocktail to include Vectibix in place of Cyramza. Good news/bad news about the Cyramza being gone. Good news: no more excessive flatulence! I enjoyed that going away as I was never one of the “pull my finger” crowd, and the amount I was farting went from embarrassing to comical and back a few times over. Bad news: that drug, and the others in that family are no longer viable treatment options for me anymore. This is scary because there are a limited number of treatment options out there and this one was just scratched off the list for me. In addition, there is no guarantee that the other available drugs will work. Eventually the cancer will grow resistant to all the treatments, and I’ll die. But as Arya Stark would say, “Not today!”

            Starting a new treatment is always nerve wracking (as if having Stage IV colon cancer wasn’t nerve wracking enough) because you never know if the new treatment will work. So we started with Ironotecan and Vectibix. Good news/bad news about Vectibix. Good news, after the first treatment the number dropped from 46.9 to 21.5. It was working! (insert Snoopy ‘Happy Dance” here) Better news: it continued to work and the number continued to drop to the lowest levels I’ve ever had on a consistent basis, <.5. Bad news: when Vectibix is working you get a nasty, itchy pimply rash. I had acne in high school, but it wasn’t nearly as bad as this. It covered my face, neck, scalp and torso fully, and went lightly down my arms and legs. The oncologist gave me Doxycycline, which helps with the rash not getting infected, and Prednisone, which helps the itching- most of it anyway. Sun, heat, and sweating all aggravate the rash and itching, and it’s hard to avoid heat here in south Florida- thank G-d for air conditioning! The rash is uncomfortable and ugly. A side effect of a side effect is the 15 pounds I’ve gained from the Prednisone. One odd side effect is super eyelash growth. My eyelashes grew so much that I had to ask my wife to trim them multiple times because they scrape against my eyeglasses and smudge them. The lashes on the outside were so long, they were touching my eyebrows. Yet another odd request for a spouse/partner brought to you by the cancer/chemo experience, ”Um, sweetie, would you mind trimming my eyelashes for me?” I’ve always had long eyelashes; I’ve been lucky in that- now they’re crazy! 

            In addition to crazy eyelashes, my nose hair grew coarse and out of control, but luckily my beard trimmer has a nose hair trimmer attachment. While I have the rash on my face, neck and torso, the skin on my fingertips have become dry and they would split open without warning. Imagine getting paper cuts without touching any paper. The skin on my fingertips has changed so much the fingerprint ID on my phone doesn’t recognize my thumb.

            After four months of the new treatment, and shrinking numbers I had a PET scan. The CEA by that time was well below the NED (No Evidence of Disease) threshold. In the past when my number was down that low I was NED- even if only temporarily. Not this time. The PET showed there was still one lymph node behind my stomach that was enlarged, but not active. It was dormant. My oncologist said he doesn’t like dormant, he likes eradicated. The analogy he used was that there was a bear in a cave and it was sleeping. It will eventually wake up. I replied, “Let’s go kill the bear.” I would have three more months of treatment and then another scan. March 2018, was time for that scan- this time a CAT scan. Good news: the lesion shrunk even more- from 1.9 cm to 1.6 cm. Bad news: to be considered NED (and to have killed this bear) the lymph node had to be 1.5 cm or under. The oncologist was happy- “It’s still shrinking,” and then ordered two more months of treatment. We’ll have to wait and see what the scan shows after that…

Part 12: Give Me A Break!

          February 15^th, 2017 was my last maintenance chemo. I was officially in remission and NED (No Evidence of Disease). A brief note about being “NED”; there is no cure for Stage IV colon cancer, it’s considered treatable, not curable, and is treated like a chronic disease. Even though there is “no evidence of disease”, since the cancer spread from my colon to another organ (my liver) there would always be cancer cells in my blood that will eventually land somewhere and start growing again.  So while there is no “evidence” of disease, there are still cancer cells floating around my body. Once again I’m lucky in an unlucky situation as it’s rare to get to be NED, and rarer still to stay there. At that time my CEA was 1.2, my scans were clean and my oncologist gave me the best news since my diagnosis- I was getting a break from chemo! This was my first break from treatment since I started chemo back on April 21, 2014. From now on I would have blood drawn to check my CEA and my port flushed every six weeks, with scans to get an updated look every three months. As long as my CEA stayed below 2.5 and nothing new showed up on the scans, I would continue to not need chemo. I had been in remission before, but my numbers started rising while doing maintenance chemo and I never got to have a break. Obviously I was looking forward to this!  I was hoping to have surgery for an incisional hernia I had developed in my stomach where I had my colon resection and then start exercising and get back into some semblance of (better) shape.

            
          About a week into my break I started having pressure and severe pain in my chest. When I called and asked, my oncologist assured me that this was not a side effect from the chemo, and said I should check it out with a regular Dr. I have Gastroesophageal reflux disease (GERD) from before I had colon cancer (ah the good old days when migraines, GERD, and flat feet were my biggest medical worries!), and the pain and pressure felt similar to those I had when I was first diagnosed with GERD so I made an appointment with my GI Dr. He said this wasn’t anything associate with the GERD and I should go see a cardiologist. So off I went to see a cardiologist. The cardiologist immediately sent me to get a CAT scan of my heart to make sure I was in no danger of having a heart attack. The results came back negative, and he told me the chance of me having a heart attack was 1 in a million.  I was very happy to hear that because the pain was so intense at times I thought I *was* having a heart attack. During this time, there were nights where I slept on the couch because I was afraid I would have a heart attack in my sleep and I didn’t want my wife to wake up next to a dead me. After a more complete exam the cardiologist told me I had an acute case of pericarditis; inflammation of the pericardium and build up of fluid around the heart. He put me on 2 types of medication and told me he wanted to schedule an echocardiogram to be thorough, and make sure there wasn’t anything else wrong. A week later I was back at his office, getting an echocardiogram by the Dr.’s assistant.

That evening at about 11:30, as I was driving home from a bi-weekly Dungeons & Dragons game I play in, I got a phone call. I didn’t recognize the number so I wasn’t going to answer it, but then I thought, “It’s late, I wonder who that is…” so I picked up. It was the cardiologist. Instantly I knew something was wrong- no Dr. calls you at that time of night with good news. He asked me if I was able to go to the ER immediately- and not just any ER, but a specific hospital that has a special cardiac unit. I asked him why, and he told me something looked suspicious on the echocardiogram. He said there was a chance my aorta was leaking, and that was causing the pericarditis. If that were the case I would have to have open chest surgery so they could close the leak- sew up my aorta. He wanted me to get another CAT scan of my heart- this one to specifically look at my aorta and see if it was actually leaking. If it were I’d be admitted to the hospital right then and there and be scheduled for surgery. I asked him what the chances were that my aorta was leaking, and he said 5%. This got my heart racing since he told me the week before that my chances of having a heart attack were 1 in a million. 1 in 20 does not feel as safe as 1 in a million!   To my own surprise I didn’t really panic. I guess after a couple of years of dealing with colon cancer and the fun times it provided on a daily basis, this was just one more thing. I got home, said hello to my wife, and then told her we have to go the ER. I told her why, and that’s when I had a 42 second breakdown. I cried, and cursed, and then we left for the hospital. My wife was (and continues to be) a rock.

We got to the hospital, and checked into the ER. Luckily we didn’t have to wait long for the scan, which was quicker than the scans I usually had. This makes sense since they were only looking at my heart this time, not my pelvis, abdomen and chest. The results of the scan showed that my aorta was fine, and I was told I could go home and relax. So we went home, and I was able to relax- with the help of Xanax.

I stayed on the pericarditis medications for another 5 weeks, and it slowly got better. I had to stay on the medication even after symptoms were gone because of the risk of it recurring. By the end of April I was finished with the drugs, and then it was time for me to get my incisional hernia repaired. I had developed it around September 2016, right above my belly button. It’s a strange thing to see your intestine bulging through your abdomen, and when you push it back inside it makes a gurgling sound and creates a strange sensation that is difficult to describe. So in the beginning of May I had my hernia repaired. The surgery was successfully done lapriscopically and the recovery was more painful than I thought it would be. The week following the surgery it was time to get my CEA checked. It had gone up the last 2 times, from .7 to 1.2. to 3. When they checked it this time it was up to 8.2. The oncologist ordered a scan and wanted me to start full chemo again the next week. When I told him I had surgery the week before, he begrudgingly put off the treatment for an extra week. The chemo I was going back on lowers your platelet count, weakens your immune system, and causes you to heal slower, so you need 2 weeks off after surgery. When the scan results came back I had 2 new lesions in lymph nodes that were behind my stomach. Another recurrence. Seems I couldn’t really get a break after all…

Part 11: New Beginnings

         It’s been a while since my last update. I didn’t realize until I looked that it had been well over a year. Time moves strangely when you have cancer, and it’s hard to believe how long it’s been since I last wrote. The daily grind of fighting cancer, and the cumulative side effects just didn’t have me in the proper headspace to write. Also, telling my story started feeling like I was just complaining, because there was so much that was going wrong. And honestly, life just got in the way. I was working full time while doing chemo during the last year. Our 19-year-old cat Miss Kitty- who was a great nurse to me- had to be put to sleep. We got 3 new kittens: Arya, the many-faced cat, Alice, the Magician, and Vincent, the van Gogh. We sold our condo and bought a townhouse (with sales falling through on both sides before we got our current home), and moved. To end the year, I went on disability and was laid off from my job of 18 years. All this and more happened in what I’d call “normal” life, while the following happened medically.

When I would get home from chemo, Miss Kitty would be my nurse and make sure I wasn't alone.

The rising CEA I mentioned in my last post from oh-so-long-ago did lead to a recurrence. With Stage IV colon cancer it’s not a matter of if it comes back, but when. A brief re-cap of my CEA progress: My CEA hit a low of .9 May 3^rd, 2015. From there it slowly and steadily rose. I was still undergoing Maintenance therapy which consisted of Leucovorin, Avastin, and 5FU, and wearing the pump for 2 days after treatment giving me even more 5FU. By the end of October 2015, when the latest CAT Scan came back with everything being stable, and my CEA still below 2.5, I was taken off the pump. By December my CEA had risen to 2.5, and the Oncologist wanted me to get a PET Scan to get a better look at what was happening inside me. The insurance company said no, but they would authorize another CAT Scan. I fought as best I could for the PET Scan, being as I hadn’t had one since September 2014. The insurance company said that they only would authorize a PET Scan if the CAT Scan showed new abnormalities, or if I was diagnosed with a different type of Cancer. Basically, they would only grant the scan if I got worse, not as a measure to prevent me from getting worse. This really pissed me off. This was a scan that my Oncologist, Surgeon, and Primary Care Physician all agreed should be done for re-staging.

By the middle of January 2016 my CEA had risen enough that my oncologist put me back on full chemotherapy. This time it would not be Folfox, it would be Folfiri. Folfiri is a combination of Leucovorin, Ironotecan, and- the still aptly named- 5FU (Fluorouracil), and I would again have to wear a pump of for 2 days after the infusion was over. With this cocktail Avastin was replaced with Cyramza- a newer generation of Avastin. All of the old side effects came speeding back, and the Cyramza had a new one- flatulance. Yes, it is documented that Cyramza makes you fart- and fart all the time. There was a good and bad of this. The good is that for me, they were mostly funk-free. The bad- they were loud. I am sure there were times I was lecturing in my Art History class where the students heard something.

I was on Folfiri longer than I was on Folfox- approximately 8 months. The chemo brain was really hitting me hard this time, with my wife mentioning conversations that I honestly never remember having. In addition it was harder to just concentrate at times. The other side effect that seemed to get exponentially worse was the fatigue. I was constantly exhausted. Some days it was a struggle to get out of bed at all. In August the CEA had gone all the way up to 5.9. That’s really not that high relatively speaking, but it was rising while I was on chemo. This is where things got even scarier. Full chemo had always helped control my disease, and now it wasn’t. I was due for another scan, and this one showed one small lesion on my liver. Now we knew what was causing the problem. What the oncologist wanted me to do to fix it was something I had never heard of.

From left to right: Arya, Vincent, and Alice

The oncologist sent me to an interventional radiologist. What is interventional radiology? I’m glad you asked- because I had to also. Interventional radiology is a sub-specialty of radiology in which specially trained doctors perform minimally invasive procedures to diagnose and treat various diseases and effects of diseases- in this case the lesion on my liver. So I brought my latest scan to the interventional radiologist and he took a look. After consulting with my oncologist they determined that Radio Frequency Ablation (RFA) was the best route to go. RFA is where an almost boiling hot needle is inserted into the lesion, and then it and the surrounding tissue are burned away. They Dr. is guided by the procedure being done in a CAT scan machine so they can have pinpoint accuracy. It’s amazing technology! It also has a very high success rate- over 85%.

The oncologist told me that we’d have to wait a couple of months to see the full results, if there were any. He was wrong about that- my next CEA already started showing improvement. On August 17^th, it was 5.9, by September 7^th, it was 4.5, and on September 21^st it was 1.9. It worked! By December my CEA was untraceable (<.5)- the lowest it had ever been. I was off of full chemo and back on maintenance, and if things stayed this good, I was on my way to getting an actual break from chemo- the first one in the three years since my diagnosis. This was amazing news! I actually did get a break from chemo, but it wasn't what I was hoping for...

Part 10: The End of The Beginning

So I was back on the regular Chemo Maintenance regiment- infusions every other week and then a pump for two days. The side effects from my “Adventures With Xeloda” were still lingering but getting better. Now it was time for a new adventure- marriage. We knew this was something that could survive the “better or worse”- though I will admit I hoped to get to the health part of “in sickness and in health” sometime soon. When we first started talking about marriage I joked about doing it in Vegas- and she agreed. So we planned our Vegas wedding in June (someone’s bright idea to get married in the desert in the summer!). We decided to have the ceremony at the Excalibur, and upon the suggestion of a friend, stayed in the Monte Carlo. Of course Cancer doesn’t care what plans you have, it does it’s own thing. My body, which had been valiantly fighting this disease for over a year started having issues again- incredibly painful bowel movements. Unfortunately this happened while my Oncologist was on vacation, so his office referred me to a gastrointestinal guy- the one I had used in the past couldn’t see me for two weeks, and I was in a lot of pain, and didn’t want to wait that long to be seen and get to the bottom of the problem. The oncologist’s referral got me in right away and he diagnosed me with an anal fissure, gave me a cream to apply, and told me to take Sitz baths twice a day. A Sitz bath is where you sit in hot water for 10-20 minutes and soak. After about 10 days things still weren’t getting better. I had an appointment with my back from vacation Oncologist and he told me to go see my surgeon. The Oncologist told me that he knows fissures are painful and that women have told him that having a bowel movement with one feels like giving birth.

The surgeon confirmed the fissure, but told me that part of the problem with a fissure is that the sphincter muscle goes into spasm, and that makes it even more painful. He gave me a different medicine to be applied internally and told me that 90% of the people who have a fissure get better with this medication. I wasn’t going to apply it barehanded, so I went off to find finger cots. Just picture something that looks like a condom for your finger. So I started applying the medicine 3 times a day. It’s in the middle of this that we went to Vegas to get married. The wedding was great with family and a few friends attending- small, intimate, and perfect. While there I also got to play poker at the World Series of Poker- just in the room at the Rio, not a bracelet event- though maybe someday… Despite everything I don’t think I’ve ever been happier than I was marrying my amazing and lovely wife.

When we returned from Vegas things were not any better for me physically- as a matter of fact they were getting worse. I went back to the surgeon, and he told me that with the chemo and stress I was under that a way to relieve the spasms that were causing the pain was to have a sphincterotomy. This is a “minor” surgery where they cut the sphincter muscle, which prevents it from going into spasm. It’s an outpatient surgery requiring one small cut and one stitch. The only risk was for fecal incontinence, which I was told is more common in women (whose sphincter muscle is not as large) and old people (whose muscles don’t work as well to begin with). The surgeon went on to tell me that he had not seen this happen to a man my age. I decided to have it done. It was a quick procedure with no huge preparation like my other surgery. I was in and out in a few hours, and told to rest for a couple of days afterward. For a few days, maybe a week, things got better; the pain was less, and my body seemed to be getting back to “normal”. Then the pain started again.

I went back to see the surgeon. A quick side note; it doesn’t matter how many times it happens, having a colo-rectal surgeon examine you is never fun or dignified. He said the problem I was having now was a skin irritation- basically an adult version of diaper rash. I asked him if there was something else I could call it since I didn’t want to go around and tell everyone I had diaper rash. He told me it was Moisture Associated Dermatitis, to which I replied, “You mean I have “MAD Ass?” He found this highly amusing (got to love a surgeon with a sense of humor) and asked if he could use that. I told him he could as long as I got credit. I got prescribed another cream to apply- this time externally over the irritated skin. I was also told no more Sitz baths as the moisture was the problem, and to use Desatin as needed to keep the area dry and try and prevent more irritation. Also, sweating was a problem, as that would also cause more irritation. Living in Florida, that did restrict things I could do, which is frustrating to say the least. The problem continued to come and go (alternating with extreme itching) for the next several weeks. It mostly got worse after chemo and the pump.

 In October I got my next CT Scan, and it showed that everything cancer-wise was stable. There was one lesion left on my liver, but it had not grown. With everything continuing to be stable the Oncologist discontinued the pump- I was down to infusions every 2 weeks and that was it. With this, my bowels and my ass started getting better temporarily which I am very grateful for. Unfortunately my CEA numbers were slowly, but steadily rising…

Interlude 3: Eternal Sunshine of My (Not So) Spotless Mind

I know it’s been a while since I’ve posted an update. Honestly, my concentration level hasn’t been there, and neither has my patience. While my story is not over by any stretch of the imagination, I’ve had a hard time continuing to write about it. The most recent news: I’m still in remission, and my latest CAT Scan showed only one lesion left on my liver (which has been stable for about 6 months), which is great news considering I was told that when I started that my liver was more disease than liver and looked like Swiss cheese. Since the liver regenerates, where there were lesions, there is now healthy tissue. Would it be better if the last one was gone? Of course, but I’ll take being down to one. More good news- the amount of chemo I get has been reduced (I no longer have to wear the cursed pump after the infusions- though they still happen every two weeks for three hours). Of course, things always seem to be a mixed bag. My CEA number has steadily risen and is now at 2.1. If it rises over 2.5 for two tests in a row I’m back on full chemo. So, while I’m trying to stay positive, it feels like that number, and full chemo is out there waiting for me. And while the physical problems are still vast and varied, it’s the mental ones that have been getting to me more lately. How do you keep your mind out of the rabbit hole of worry and anxiety about dying of Cancer and the effect that will have on those you love? How do you forget about Cancer, and remember to live your life?

“Eternal Sunshine of the Spotless Mind” is one of my favorite movies. It’s the story about a man (Joel, played by Jim Carrey) who after a painful breakup discovers that his ex-girlfriend Clementine (played by the amazing Kate Winslet) has undergone a procedure to have all memories of him and their relationship erased from her mind. Joel decides to undergo the same procedure. The film explores the intricacies and intimacies of relationships. A good deal of the film takes place inside Joel’s mind as his memories are being erased. There comes a point in his journey where Joel decides he doesn’t want to erase his memories of Clementine- that they weren’t all bad. He’s on his knees and screams: “I want to call it off! Can you hear me? I don’t want this anymore! I want to call it off! Is anybody out there?”

I know exactly how Joel feels. No, I haven’t had any memories erased; I was diagnosed in April 2014 with Stage IV Colon Cancer. I’ve been on Chemotherapy every two weeks for 18 months, with a break to have colon resection surgery. I’ve endured a string of at best uncomfortable, at worst incredibly painful side effects. Yes, I’m currently in remission, but as I’ve written about before, the disease is still there in my blood, like an internal Sword of Damocles. There’s barely a day that goes by where I don’t mentally yell those same words Joel did in the movie. “I want to call it off! Can you hear me? I don’t want this anymore!” It’s the pervading thought in my mind. It’s become my mantra. I wish I could have it erased. However, unlike Joel, I don’t have a choice about whether I want to do this or not. You can’t choose to not have Cancer once you do.

This has led me to wonder where I fit in the scheme of things Cancer-wise. On the one hand I do have Stage IV Cancer, and that’s real and serious and life threatening. On the other hand I’ve had a great response to treatment and am doing better than most in my situation. My Oncologist told me that they have protocols for people who do poorly, and they have protocols for people who are doing average. What they don’t have is protocols for people who are doing above average. One of the main reasons for that is it’s so rare to do well (though it’s getting less rare as more and more drugs are being created to combat this scourge). I am a member of a couple of online Cancer groups, and I see people on there who are doing worse than me in one way or another; bad reactions to the chemo, colostomy bags, no support, no insurance. That brings an odd combination of feelings: luck, fear and guilt. I’m lucky that I’m not them. I’m lucky to be doing so well in a bad situation, I fear ending up like them- or worse, and I feel guilty for not doing as poorly as others, and for not wanting to be like them. It’s an odd sensation to feel lucky about my incurable Cancer. In our house we call it being lucky in an unlucky situation. But it’s still Cancer. It’s still always there, and it’s very difficult to forget.

There are times I do forget what’s happening to me. Spending time with my wife, going to a movie, playing poker, swing dancing, and hanging out with friends are all things that even if only for a brief amount of time allow me to forget about this trauma that is Cancer and how it’s affecting me. These are good things. These are things I don’t want to forget, however I would like- with all of my being- to forget about Cancer. Unfortunately, like Joel, no matter how much I want to call this off, I can’t. Mary (played by Kirsten Dunst) from “Eternal Sunshine of The Spotless Mind” sums this up with a Friedrich Nietzsche quote: Blessed are the forgetful: for they get the better even of their blunders.” I never thought that being able to forget something would be so precious- even if it’s just for a little while. Now I know better.

Part 9: Adventures With Xeloda

After I got back from the trip to Paris and Amsterdam, it was time for me to try the oral Chemotherapy called Xeoloda. My Oncologist wanted to wait for me to return from my trip because of its possible side effects. Taking the oral medication would change my visits to the Oncologist to just once every 3 weeks (instead of every two weeks) for an infusion of just Avastin, which would be 30 minutes, instead of 3 1/2 hours for the previous regiment. The procedure for the pills would be to take 8 pills a day- 4 in the morning and 4 at night, two weeks on the pills and one week off. I was looking forward to it because it meant no more pump (as I’ve said, I hate that thing), fewer trips to the Dr, and less time off work. Up until that point, outside of treatment days and pump removal days where I had to take a half-day off for each, I had only missed work twice until the surgery when I was out for 6 weeks. First the insurance had to approve the oral meds, which they did. Then a pharmacy called me, and I had to answer questions from 3 different people. Once I finished that, the drugs were shipped directly to my house. Very convenient. They came with a bunch of papers and warnings, as well as arriving in a bag with a biochemical hazard logo on it. Part of the cautions was not to let it touch my skin at all. My enthusiasm for the pills slowed a bit right about then.

So I started taking the Xeloda without much of an issue- I was tired but it was endurable. The first two weeks went pretty well with only minor side effects. The problems started after the week off when I was midway through the second round of pills. I started getting mouth sores, and hand and foot syndrome. The mouth sores made it hard to talk and almost impossible to eat. I started living on mac and cheese and mashed potatoes. The “Magic Mouthwash” I had did nothing, and the Lidocaine they gave me worked for a short period of time- sometimes just long enough for me to eat something more substantial. The hand and mouth syndrome consisted of pain in my hands and feet; the skin feels like it’s been pulled too tight over your fingers, and they start to crack and peel. It’s an odd combination of numbness, and pain. That happened to my feet too, it just took longer for them to peel. The nurses suggested using lotion (Udder Butter was the most recommended) to try and alleviate the hand and foot pain. It didn’t work so well.  In addition to having a hard time talking because of the mouth sores, I was limping from the pain in my feet, and my hands hurt so much that tying my shoes was painful. The next side effect is where things really went south.

I want to insert a disclaimer here: the bad reaction I had to Xeloda is an extreme case. There are many people who take it and while they may have side effects (and usually do) they are nowhere near as bad as what I experienced. I also need to explain the difference between the Chemo pills and infusions and how the body absorbs each. In an infusion, the Chemo drugs are injected directly into the bloodstream and dispersed throughout the body to be absorbed through the blood; a very direct method for getting the medication into the bloodstream. The medication is then secreted through the mucus membranes and skin (hence the mouth sores, neuropathy, and itching when I get hot). For the pills the Chemo is absorbed through the body from ingestion. In order to get the same dose of the Chemo from the pills into your bloodstream you have to take 3 times the amount of the drug as in the infusion in order for it to be absorbed into your body. It’s then secreted the same way, but there’s more of it, kicking the side effects into hyper drive.

By the middle of the second week of the second round of taking the pills, it started to hurt when I was urinating. At first my fiancé and I thought it might be a bladder infection so I tried some over the counter AZO to counteract it. That did nothing but turn my urine orange. I went to the Oncologist’s office to pee in a cup and see what was wrong; that was a Monday. Before the test results even came back, on Wednesday at about 5:30 in the morning, my body refused to urinate anymore. Imagine 1,000 razor blades coming out while you’re trying to urinate. Now multiply that by 1,000. The oncologist told me that women who have had this issue have described it as a urinary tract infection on steroids. He told me I had mucositis of the urethra; the secretion of the Xeloda had destroyed the mucus membranes in my urethra, leaving no lining for anything that was going past, and causing the extreme pain. I was then told that I would need to get a catheter inserted to let the mucus membranes regenerate. I was not happy about this. After all, I had had one after surgery which was a not so good experience, and besides, who likes having a catheter? The Oncologist made an appointment for me that morning with a urologist, and my fiancé and I drove over there.

We got to the Urologist’s office where I filled out the usual paperwork and waited what ended up being over an hour. During this time I felt like I had to urinate, but my body was still shut down. After examining me, the Urologist agreed that I would need a catheter. He was getting ready to insert it himself right there in the office, when I asked if I would be sedated for it. He said they normally don’t sedate someone to insert a catheter. I said, I’m in excruciating pain when anything comes through there, and you want to stick something up there while I’m conscious? No thank you. I want to be out for this. He said if I wanted to be sedated I would have to go to the hospital. I said, no problem, I’ll go to the hospital. So the Urologist made me an appointment with his son, who also happened to be a Urologist for later that afternoon/early evening, and we went over to the hospital to get ready for the procedure, and to be there in case the son had an opening earlier.

The hospital is down the road from the Urologist’s office, and right next to the Oncologist’s office. We were told to enter through the Emergency Room, and they would take care of things from there- the Urologist had made arrangements with the hospital. We checked in, and they set me up in a bed, with the usual; IV, blood pressure and pulse monitor, and a lung X-Ray to make sure I was in good enough health for the anesthesia. I explained my situation to the nurse and Dr. that were there, and they too said it was unusual to be sedated for a catheter. I didn’t care. There was no way they were doing it with me conscious. After a while the ER Dr. said that if I were willing, he would sedate me and try it. If it didn’t work we could then wait for the urologist. The difference being that waiting for the urologist would mean being there for another few hours and they would then have to admit me to the hospital- more time and paperwork. This way I could be out of there much quicker- if it worked. He assured me that he’d done them before, so I figured I’d let him take a shot.

They got everyone together- a Dr, 2 nurses, and of course my fiancé was there as well. Nothing like having an audience for getting a catheter inserted. The nurse came over and injected something into my IV. I asked if that was the sedation (I didn’t feel anything happening), and she said “Yes, and this is to flush the IV.” My fiancé told me after that as soon as she said that my eyes rolled back in my head and I was out. When I awoke, about 5 minutes later, I had a catheter in me, and a tube that ran from my penis to a bag strapped to my leg where the urine would gather. I had to empty that a few times a day.

A short time after that we were on our way home. I had an appointment with the urologist to remove the catheter the following Monday. Those 5 days were some of the longest I’ve had since my diagnosis. I spent most of them on the couch trying to get into a comfortable position and staying there once I found it. Any little movement caused the catheter to shift and become painful. Our cat likes to use me as her favorite piece of furniture- she lies on my chest an nuzzles my beard- especially when I’m not feeling well, but I couldn’t have her jumping up on me, so I spent the time with a pillow on me as well. Before I left the hospital they gave me a tube of Lidocaine to apply to where the catheter entered me to help with the pain, and I used that quite a bit. One consequence of that, is sometimes the Lidocaine dried and stuck to the shorts I was wearing, and when I needed to do something it would pull- not a pleasant experience. I also used oral pain meds I had been given previously and Xanax to try and keep my head about me.

Monday finally came, and we went back to the Urologist’s office to have the catheter removed. When I got there, the Urologist informed me that he wouldn’t be removing it himself, but his two nurses would. This threw me for a bit. Not only had I had a bad experience in the hospital the first time I had a catheter removed, but I had been in so much pain this time that I wanted the Dr. to do it. I was told the nurses always did it. There was not enough insisting in the world that would have changed anything about that. It took me a good 30 minutes to gird up my courage to let the nurses remove it- even with my fiancé holding my hand I was scared. And it did hurt coming out- though it came out mercifully fast. I was then sent home, and told to come back in the afternoon- they wanted to make sure everything was working as it should. So I went home and waited to urinate again, afraid of what that would bring. The psychological impact of the pain, and anticipation of it still being there was still looming large. Eventually I had to go, and it still took me a while to let it happen. When I finally urinated it did it hurt a little, as they said it would from having the catheter in there for so long, but thankfully it was nowhere near what it was before. I returned to the Dr. in the afternoon, and told him it was better, and from there things slowly got back to normal physically. It was a highly traumatizing experience. The next week it was back to the old regiment of Chemo infusions every two weeks and the pump for 2 days after that, which all of a sudden didn’t seem so bad.

Part 8: Recovery From Surgery

Four days after surgery, my Semi-Colon and I were released from the hospital and sent home to finish recovering. I went home with a bandage down the middle of my stomach where the incision was, and a drainage tube coming out of the right side of my lower abdomen. The drainage tube was placed inside me and went through me to where the resection had taken place. Blood and other fluids exited through the tube that had a ball-like receptacle attached at the end. I had to empty that as it filled up- a few times a day, though as the days went by less and less fluid was coming out of me. I also had to shower with it, which is interesting because if it dangled it pulled just enough to be uncomfortable. Luckily they gave me enough tube that I could perch the end of it (the ball) on my shoulder while I showered, which kept it out of the way. I was able to shower after a few days, when I took the bandage off my abdomen. I was also told not to lift anything over 8 pounds (the equivalent of a gallon of water) as patients with colon resection surgery are more prone to hernias. Interestingly enough I could actually feel what they were talking about. When I attempted to lift something that had even a little weight I could feel the pulling in my abdomen. It’s a strange feeling, but it did keep me following the Dr.’s orders. They also sent me home with pain medication that I took as needed- and for the first couple of days I needed it. My parents went back home after I was home and it was clear that everything was going as well as could be expected seeing as I just had major surgery. I spent most of the next week on the couch. My girlfriend was there, as always, and took amazing care of me.

A couple of days after I was released from the hospital I called my Oncologist’s office, as they requested of me, and told them I was home. They asked how everything went, and when was I coming back to resume my Chemo Maintenance. I was off the chemo for 4 weeks before surgery because one of the drugs, Avastin, increases blood pressure and bleeding, and they want to reduce the risk of complications such as internal bleeding as much as possible. I told them I was still not feeling my best, and asked if it would be okay to wait until after I had the staples and drainage tube removed. They said okay, so within 2 weeks of the surgery I was back at the Oncologist’s office doing the Chemo Maintenance routine again.

Ten days after being released from the hospital I had an appointment with the surgeon to have the (24) staples and drainage tube removed. When I got there the surgeon said the incision looked good, was healing nicely, and that he would remove the tube himself, instead of his assistant. I asked if it would hurt, and he told me that most people just think it feels weird. He snipped the (6) stitches holding the tube in place and then proceeded to pull the tube from my body. I didn’t watch, but my girlfriend did and she was amazed at how much tubing there was in me- somewhere between 18 and 24 inches. He was right it did feel weird. It also hurt! It was a strange, dull and uncomfortable pain that came from deep in my abdomen on the left side; the incision it went in through was on my right side. This is a location I’m not used to feeling at all, and I’ll admit, I let out a scream- not ear shattering but a scream nonetheless. The surgeon asked if I was okay, I told him yes, but I didn’t enjoy the tube removal. He smiled and left and then his assistant proceeded to remove my staples. Again, I didn’t watch, but I felt it- and some of the staples had dried blood over them and were a little tough to get out. I was wincing and flinching at different intervals, so I apologized, telling her it was nothing personal. She told me not to worry; she’d been punched before while removing staples. I told her I wouldn’t punch her, but I made no promises about not kicking. It took less than 5 minutes to remove all the staples (though it felt longer), and when she finished I was a little sore, but staple free- and I didn’t even kick her. I had the beginnings of a scar, and what looked like ant bites on either side of the incision where the staples had been.

The following weeks are a blur- time does pass strangely when you have Cancer. I spent my time recuperating, and trying to get my strength back. Between surgery and Chemo, it does knock you for a loop. My girlfriend and I would try and go out once in a while- just to get me out of the house, walking and getting back into the swing of life. Some forays back to the real world were more successful than others. Bowel issues were the primary variable. On one excursion out, as we were driving home I had to, had to, find a bathroom or it wasn’t going to be pretty. I was driving and finally saw a Boston Market, which I quickly ran into, and the crisis was averted. Through all of this, by necessity, I have gotten more used to using public bathrooms. It’s the fear of having issues like that has kept me from doing certain things. As I move along in my recovery and the “new normal” of my life, I do try and push through the fear and the issues my body gives me while fighting this disease and get out and have some fun.  Sometimes it works, and sometimes it doesn’t.

The surgeon told me that it takes about 6 weeks for the external wounds to heal, and between 8-12 months for the insides to fully heal. I returned to work 6 weeks after my surgery. I was hoping to only be out 4 weeks, but between my body recovering and getting the appropriate paperwork completed so work would let me back in the building (I was out on Short Term Disability), it took a full 6 weeks. Two weeks after that I was able to take a group of students and artists on a trip to Paris and Amsterdam- a trip that was in the works well before I knew I had Cancer. My girlfriend went on that trip too, and I came back from France with a new title- fiancée.