125

How many things have you done 125 times? I’m not talking about things like eating, using the bathroom, and going to school and work. I’m talking about things you do, and do deliberately. I think I may have been to the movies 125 in my life, and I’ve been dancing 125 times. Other than that it’s really hard to come up with something I’ve done 125 times- except chemotherapy. When I mention that I’ve had 125 chemo treatments, people invariably joke, “But who’s counting?” Well, I am. I’m counting because when I’m feeling like shit, or unable to do something simple like go out to a movie with my wife, or hang out with friends, or cook dinner, or fold laundry, remembering that I’ve had chemo 125 times reminds me to give myself a break. It reminds me that I’m going through most people’s worst nightmare, and so far, I’m doing okay. It reminds me to be a little gentler, and kinder to myself. Does it always work? Honestly, no it doesn’t. But I’m working on that.

There are a great many things that people aren’t familiar with when it comes to chemo. First, as soon as you start chemotherapy you feel sick- the side effects are pretty much instantaneous and vary with different treatments. The severity of the side effects also depends on the treatment and the individual. Once you start chemo there isn’t a day that goes by that you don’t feel the side effects; in addition to having cancer, you feel sick in multiple ways all the time. Each time you start a new chemo regimen you get a different set of side effects. Some overlap- just about all of them causes nausea and fatigue, and the effects are cumulative.

I’m often told I “look good” or that I don’t “look like what a cancer patient looks like”, or at least what most people think a cancer patient should look like. My hair has, at times, thinned, but never completely (thankfully) fallen out, and I’ve been on steroids for the last year and a half so I’ve gained 20 lbs., not lost weight. I’ve had a pimply rash for about a year and a half, cuts on my fingers where the skin has split, and infected nail beds, but nobody really sees those and thinks “cancer”. While I may not look like what most people expect when they think of someone who has cancer, I am here to tell you I am exactly what someone who has cancer looks like.

Unfortunately most people get their “knowledge” of living with cancer from movies and TV. These are horrible sources for the reality of living with cancer for an extended period of time. Stereotypically, in a movie, the person gets cancer, loses their hair, loses weight, and either dies in 6 months, or is cured and lives happily ever after. And they do it all within a 2 hour runtime. In my reality it’s been over 1,700 days that I’ve been undergoing chemotherapy, and I’ve felt sick since the first day of the first infusion. I did have a 3-month break from chemo February 2017– May of 2017, but in that time I got severe pericarditis, and had an incisional hernia repaired, so that “break” was not a time when I was feeling particularly well.

When I discuss chemo and it’s side effects with people, it’s usually 1 or 2 side effects at a time. A common response is, “Well, it’s keeping you alive, so I’m okay with that.” Nice to know that other people are okay with me suffering side effects. Snark aside, I understand that people are happy that I’m alive, and they see side effects as a “small price to pay” for not dying. The truth is there isn’t a time where it’s only 1 or 2 side effects that are affecting me at any one time. I’ve come up with a list of the side effects I have suffered during the last 4 years and 8 months. Not all of them are from chemo. Some of them are from the medications taken to help alleviate the side effects from chemo, and some are just things that you get from having cancer. While I don’t have all of these side effects at the same time, on any given day there are at least a half dozen of them that I do have.

• Anxiety
• Frustration
• Anger
• Mood swings
• Nausea
• Fatigue
• Chemo Brain
• Depression
• Hair Loss
• Vision changes
• Compromised immune system
• Surgery
• Cold Sensitivity
• Shortness of Breath
• Bleeding gums
• Bloody nose
• Body Aches
• Cramping
• Headaches
• Neuropathy
• Mouth sores (Thrush)
• Chapped lips
• Change in taste
• Dehydration
• Feeling sick
• Diarrhea
• Mucositis of the urethra
• Low testosterone
• Lactose Intolerance
• Changes in appetite
• Changes in food tolerance
• Constipation
• Anal Fissure
• Sore Ass
• Moisture Associated Dermatitis (M.A.D. Ass)
• Rash
• Acne
• Sweating
• Itchiness
• Weight Gain
• Infected nail beds
• Dry skin
• Cracked skin with cuts
• Insomnia
• Flatulence
• Thinning hair
• Long eyelashes
• Spending most of the day in the bathroom.
• Spending most of the night in the bathroom.
• Needing to know where a bathroom is before I decide to go someplace.
• Not being able to go someplace because I won’t make it there before I need the bathroom.
• Missing a meal in a restaurant because I’m in the bathroom.
• Having to find someplace that has a bathroom while driving because I won’t make it home in  time.
• Having to turn around and go home because I won’t make it a full evening out.

Just because these side effects are unseen, doesn’t mean they’re not there. Living this long with cancer is something that’s unfamiliar to most people (me included). Once again I’m lucky in an unlucky situation. I’ve lived long enough to have 125 treatments, while there are many others who die before getting anywhere near that. On the other hand there are those who become NED (No Evidence of Disease) and stay that way for months or even years without treatment; something I haven’t been able to do. I’ve been NED, but it hasn’t lasted long enough for me to be off treatment except for the aforementioned 3 months. I keep hoping that the next time I get to be NED I will stay that way for an extended period of time. Until then, I will keep having treatment, and keep having side effects while trying to live as normal a life as possible.

Number 126 is tomorrow.

Houston, Do We Have A Problem?

After two months more of Folfiri & Vectibix I had a PET scan. The lymph node that had been enlarged and metabolically active (cancerous) shrunk to 1.5 cm and showed as metabolically inactive. That and my CEA still being <.5 put me squarely back as NED (No Evidence of Disease) for the third time. This was on May 25^th. May 30^th was my next treatment (just Vectibix as maintenance) and my CEA was up to .6. The next month it was .9, and the month after that 1.2. Great, now the number was going up- but there was that clean scan so nothing to panic about… yet. You try having stage IV colon cancer, watching your number go up and try not to panic. It ain’t easy. As I’ve said before, I’ve been lucky in an unlucky situation, as I’ve responded well to every treatment prescribed so far. Of course the cancer eventually builds up resistance to these treatments and I move on to the next one. The problem with that is, I’ll eventually run out of treatment options. I talked to my oncologist about looking at what other treatment options might be out there for me, including clinical trials. He agreed that now would be a good time to start looking and told me I should go to MD Anderson in Houston, TX. - the top cancer treatment hospital in the country.

I called MD Anderson and made arrangements for them to get all my medical records from my local oncologist. They told me that after they checked out my records, if they thought there was something they could do, they would schedule an appointment for me. That appointment was scheduled for August 10^th. This had me both excited and nervous. It was around this time my CEA was going up and hit the aforementioned 1.2, which made me nervous, but I was excited that they might have something that could help me. They have an online portal for patients and I could see that they already had a full morning of appointments for me lined up: 8:30 AM: Registration, 9:00 AM: Meeting with the Dr., 10:00 AM: Blood work, 10:25 AM: CAT scan with contrast, and then I would have a follow-up appointment with the Dr. the next Monday. My family is in Texas north of Dallas, so I planned to drive up and spend a couple of days with them and to drive back in time to make that appointment.

I got to my appointment only to be informed that I had missed part of the online “paperwork”- eight pages of medical history questions that I had to answer before going in. This put me behind schedule. When I saw the Dr. (who was running behind as well) he told me there wasn’t going to be much he could tell me until he saw the blood work and CAT scan results; a little frustrating, but understandable I guess. So on I went to get my blood drawn (one of the best sticks I’ve ever had), and the CAT scan. MD Anderson is huge. To get from phlebotomy to the CAT scan there was an indoor shuttle, and it still took about 10 minutes to get there! With the delays, I didn’t get to the CAT scan until 12:30, and they didn’t scan me until 3:00. The contrast I had to drink was different than the contrast I got back home. At home I have the “delicious” barium smoothies to drink (I go for the banana flavor). Here they gave me options for drinking the contrast in 32 ounces of water, Crystal Light, orange juice, or Sprite (what movie theaters call a medium drink). I picked Sprite. Almost two hours later as I was lying down for the CAT scan, the radiologist asked me if they explained the rectal contrast to me. I told her they neglected to mention the rectal contrast. She started to explain that she was going to “take a tube and insert it…” at which point I cut her off and politely told her that I was going to decline the rectal contrast. She said no problem, and we proceeded without it. I looked at it this way; I’m scanned and tested regularly, and I know there’s nothing back there anymore. Also, I was going to be driving 5 hours north right after, and wanted to have a comfortable time sitting for that long. The scan went well, though they inject the contrast at a quicker rate than I’ve had before. The iodine-based contrast they infuse creates a warm feeling and the urge to pee. The ones I’ve had in the past only made my torso and pelvis get warm, but this faster rate had the warmth expand all the way up to my face and down my arms. It was surprising, but went away as quickly as it started, and I was done with my appointment. I was now free to leave, go visit my family, and come back on Monday.

I spent the next couple of days having a nice visit with my family ( eating fresh chocolate chip cookies and getting beat at Flux by my nephew). I drove back to Houston on Sunday evening to get in for my follow-up on Monday, after which I was flying home. When I saw the Dr. he told me my CEA was 3.1, at which point I started to panic. He said that their lab results are usually on the high side, and it’s better to use the same lab consistently to get a more accurate result (something my oncologist has said as well). The other reason not to panic was that my CAT scan came back clean. However, when I saw the report I saw that wasn’t completely true; the lymph node that we had spent time shrinking had grown from 1.1mm x 1.5mm to 1.2mm x 1.9mm. The CAT scan can’t tell if it’s just enlarged or if it’s enlarged and “metabolically active”. That would take a PET scan. My oncologist at home has me scheduled for that.

The Dr. then told me that there was really nothing they could do that I was not doing already. He told me that since there was no active cancer that trials were a no-go at this time, and I should stay on the Vectibix until my cancer was resistant to it, and then go back on Folfox (the Howitzer of chemo that I started on when I was first diagnosed), and then call him and look for clinical trials when the cancer started advancing while on that. I asked about Lonsurf, which while it doesn’t usually decrease the cancer, it could keep it stable for a period of time. He dismissed the drug out of hand (I was so shocked by this and his saying there was nothing else to do, that I forgot to ask why). Also, I was getting pissed off. Why dismiss any course of action that could help prolong my life? I don’t want to die. I’m not ready to die. I am fighting to live, and will use whatever means necessary to do so. Another reason I was angry was because when I contacted MD Anderson they said they would look at my records and would only see me if they felt they could help me. My records showed that I had no “active” cancer. Why did they have me fly in, wasting my time, energy and money when there was nothing they could do? It’s both a good and bad thing when you’re seeing a doctor in a hospital in Texas and the smartest person in the room is back in Tamarac, Florida. So here I sit, in cancer no-man’s land; I have stage IV colon cancer but I’m NED, waiting to get sicker (my latest CEA was up to 1.9) so there’s something more that can be done. Yet another “new normal.” For now I’ll just wait and see what the PET scan shows…

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...