Chemo week 2

The second week of chemo also went smoothly, but I’ve noticed that I’m very tired especially in the evenings. I met with my oncologist this afternoon and he was pleased with my progress and lack of side effects. My blood work looked good with the exception of my CEA level, which had jumped from 11 to 22. He said that treatment can sometimes throw off the CEA level and he wasn’t too concerned, but he would order a repeat test later in the week.

God rest ye weary gentlemen

Instead of standing in line at the store to purchase last minute gifts I was standing in line at the hospital waiting to get my blood drawn. You wouldn’t think there would be that many people needing to get blood work done on Christmas Eve, but apparently the lab is the place to be for the holidays. As I sat there waiting for my name to be called I though about all of the children who were spending Christmas in the hospital battling cancer instead of being at home with their families. It reminded me of a segment I saw recently on CBS Sunday Morning called “Beads of Courage” about a woman in Arizona who started making glass beads and distributing them to children in hospitals across the country who were undergoing cancer treatment. Each colored bead represented various aspects of the process including clinic visits, chemo, radiation, etc. Some of the children had hundreds of beads, each telling their own personal story. One child in particular had so many beads that her father had to wear them as he accompanied her to each visit or treatment. It’s interesting how something so small can have such a big impact.

The Incredible Bulk

After a few days I was starting to get into the routine of the radiation treatments. The instrument has a large arm with a cylindrical head at the end that extends over the top of my body. I lie on the table with my legs braced by the foam mold that was created during the CT scan and the table is moved upward and into position. Two radiation techs, one on either side adjust my position by lining up the three tattoos on my hips and groin with laser sights on the IMRT instrument. Typically, the techs do most of the moving, but my back is so sensitive that I did much better adjusting myself while listening to their instructions, e.g. up 4 cm, right 2 cm, etc. After alignment two images were taken, one vertical and one horizontal to verify alignment prior to treatment. I had to keep my body perfectly still to maintain alignment for the remainder of each treatment. After the images were taken the arm of the instrument rotated around my body stopping at 9 positions to fire the radiation beam for about 30 sec. each. It only takes about 15 – 20 minutes for each treatment session, but it seems like eternity when you’re lying there on the table trying your best not move.  David Banner I’m not and my back would be so fatigued from holding that position so intensely that I needed a hand to get up off the table. 

Example of an IMRT radiation instrument

Chemo week 1

Monday, 12/20/10

The first week of chemo went very smoothly, no nausea or other side effects to speak of except for dry mouth, but periodic rinses with Biotene or baking soda and water really helped. I had to report back to the chemo lounge so the nurse could re-access my port and exchange the near empty bag of chemo for a fresh one filled with 168 ml of 5-FU, enough to last the entire week. While I was waiting a volunteer came around to all of the patients, handing out a fliers and visors for RamStrength, a local non-profit organization that supports cancer survivors by providing financial assistance for basic needs, programs and services. RamStrength was founded by former CSU football coach, Sonny Lubick and oddly enough I had just seen coach Lubick the previous Friday at the PVH lab (Harmony campus) during my weekly blood draw. I had no idea this organization existed in Fort Collins and while I had always thought highly of coach Lubick his stock definitely went up a point or two in my book.

“I have become comfortably numb”

Thursday, 12/16/10

Radiation was scheduled for 6:00 AM, M-F for the next 5 weeks. I decided to pull out the big guns and try a combination of meds. I took a Flexeril tablet at 1:00 AM, which helped to relax the muscles in my back while I slept and then I took a couple of Vicodin about 30 minutes before treatment and the combination worked like a charm. I was finally able to get some relief and I didn’t have to worry about my back going into spasm during treatment. It could be coincidence, but I had a strong desire to listen to Pink Floyd. Karl Marx once said “religion is the opiate of the masses”. I on the other hand was planning to take masses of opiates religiously. Seriously, I don’t like taking medication of any kind and avoid doing so unless necessary. I realize opiates are addictive, but this would only be for 5 weeks and just once a day before treatment and I’d be off of the meds during the weekend to help keep things in check. The only problem now was a serious case of dry mouth from the 5-FU and Vicodin, but Biotene along with some baking soda & water rinses helped. It seems as though I solve one problem only to create another…such is life.

“Same as it ever was…”

Wednesday, 12/15/10

I had visited my primary care physician the week before and we discussed the back pain I was felt when lying on hard surfaces. I needed something to get me through 5 weeks of radiation treatment and Aleve wasn’t going to hack it. I got two prescriptions, one for Flexeril and the other for Vicodin. I was hoping to get some relief by using one or both meds. I arrived at radiology office at 6:00 AM for simulation (verification), kind of like dress rehearsal or should I say undress rehearsal for radiation treatment. I had taken one Vicodin about 30 minutes before treatment and was hoping that would do the trick. I got about half way through the simulation before my back went into spasm, forcing my body to move. The Vicodin alone wasn’t working. Radiation treatment was scheduled to start the next day and I was felling very apprehensive.

“It’s not a purse. It’s a European carry-all”

Tuesday, 12/14/10

The nurse at the oncology office had given me a shoulder bag to carry my pump and chemo. The pump is about the size of an old Sony Walkman and the bag of 5-FU is almost the same size. The IV line is connected and pumping 24/7 so I had to make a few adjustments, e.g. sleeping, showering, etc. The first day was a little awkward, but I got the hang of it soon after. The nurse had suggested covering my port with Saran wrap and tape, which I attempted once, but it didn’t work. I have trouble getting Saran wrap to stick to anything except itself and I don’t think I’m alone here. For me it’s like trying to fold a fitted bed sheet, I can’t do it no matter how times I try. After quickly abandoning the Saran wrap idea I decided to use a sandwich bag instead. I split the bag in half along the sides yielding two pieces of plastic that hold their shape and are just the right size to cover the port. I covered the port using one half of the bag and tape in place using Transpore tape, which sticks well, but removes easily unlike the Durapore tape the nurse gave me that might as well have been duct tape. I was wearing my European carry-all with the strap going diagonally across my chest, but it was starting to rub my neck raw. My wonderful wife sewed a sleeve out of some scrap fabric to cover the strap and the chemo cozy was born, which literally saved my neck. 

5-FU chemo and pump

 

The chemo lounge

I arrived at the onocology office at 3:00 PM to begin my chemotherapy treatment. I had been told previously that I would be given an infusion bag of 5-FU and portable pump in a tote about the size of a fanny pack. The chemo would be administered in small doses 24/7 and I would need to come back each week to exchange the bag for a new one. It would just take a few minutes to hook up and then I would be on my way. Not long after I arrived the nurse came and escorted me to a large room with several recliners filled with patients receiving chemo. I was caught off guard and I don’t know why, perhaps it was because all of my previous appointments had taken place in private exams rooms, but I didn’t expect to be in “group therapy”. For those of you who don’t know me I’m not exactly what you would call a people person, which is why I’m in research instead of sales like my father, grandfather, great-grandfather…you get the picture.

As I walked into the room and sat down I began to feel my anxiety level rise. Some patients were there alone or with a care giver and others were surrounded by several family members complete with cell phones, portable video games and any other noise maker you could think imagine. One young man being treated was accompanied by his wife and baby who were seated next to me. Her baby tried to make it very clear that he didn’t want to be there either. The only sound worse than your own kid screaming & yelling is someone else’s kid screaming & yelling. Every sound in the room was becoming amplified and pretty soon I was feeling like Juno at the clinic, i.e. I couldn’t wait to get out of there.

Finally the nurse came back with the pack and supplies. She asked if I had ever had my port accessed to which I replied no. She said that most first timers usually want the site numbed with refrigerant spray. I nodded my head and said “let’s do it”. One nurse sprayed my chest around the port, which began to sting as it cooled. The other nurse prepared the Huber needle and IV line. Now needles usually don’t bother me and this was only a 20 ga. needle, but it felt like a straw as she pushed it hard into the port. I felt like an Army jump school grad getting his blood wings.

She started the pump, showed me the operation and how to change the battery just in case it died before my appointment next week. She also crimped the IV line on purpose so I could hear what the alarm sounded like. It took a few minutes for it to alarm as the dose is pretty small, only 1 ml/hr.  After signing enough paperwork to complete a car loan I was free to go.

"We are stardust, we are golden...and we’ve got to get ourselves back to the garden”

Sunday, 12/12/10

After being diagnosed with colorectal cancer I decided to make some serious dietary changes. I cut out all artificial sweeteners, lowered my sugar intake as much as I could and significantly reduced the amount of red meat I was eating. Pizza Hut was no longer on speed dial and I broke off my long-standing relationship with Ben & Jerry. I started to take a serious look at the USDA recommend food pyramid and opted to replace the Myan-like food pyramid I had been following for years, which consisted of four basic food groups: cheese, sour cream, guacamole and corn chips. In essence, I was moving toward a plant-based diet by eating more fruit & veggies. I began eating more beans and tried to incorporate them in one meal each day. Beans are a wonderful source of protein and soluble fiber. They contain saponins and phytic acid, which may help prevent carcinogenesis. While all beans are good, some beans are better than others. Our initial research indicated that white kidney is the best followed by red bean. Different varieties or cultivars as they are called, are being tested to determine which beans have the best benefits in terms of bioactive compounds related to metabolomics.

I encourage everyone I know to eat more beans. Many people claim they don’t like beans because of gas. Beans contain a significant amount of raffinose, which can’t be broken down by humans due to a lack of an enzyme called a-galactosidase. The gas is a combination of carbon dioxide, methane and hydrogen caused by bacterial fermentation in the colon. It’s worth noting the anecdotal observation that increased bean consumption over time will result in less gas. In addition, reduction or elimination of carbonated beverages will also help reduce gas.  Beans are inexpensive, easy to prepare and taste great. I can’t say enough good things about beans. For those who are interested, our lab recently put together a list of 50 "beaneficial recipes". This is a work in progress and more recipes will be posted on the Crops For Health website as they become available.

Eat more beans!

This is captain speaking…we’ll be circling until further notice

Friday, 12/10/10

While enjoying Christmas festivities at my boss’ house this afternoon I got a call from the radiology office. My radiation simulation for that evening was being canceled. I was scheduled to start treatment on Monday, but they were canceling that as well. They were having problems getting the necessary approval from my insurance company and I was going to be in a holding pattern for the next few days. I met with my oncologist that afternoon and he couldn’t believe that radiation hadn’t been approved. Typically, 5-FU and radiation are administered concurrently so I asked if this would be a problem. He reassured me that the two treatments did not have to be administered simultaneously. If radiation was delayed a couple of days or even a week it still wouldn’t change the effectiveness of the regimen. He said the important thing was to get started with treatment and soon. I would come back to the office on Monday afternoon and they would attach an infusion pack of 5-FU to my chemo port. The pack would administer a continuous dose of 5-FU, 24 hours a day, 7 days a week. I would just need to come back to the office weekly for five weeks to exchange the old infusion pack for a new pack. 

Side effects may include…

Wednesday, 12/8/10

I met with a chemo education specialist this afternoon at the oncology office. She began by explaining the pharmacologic action of 5-FU chemotherapy.  She said that it was an antimetabolite that induces…and before she could say programmed cell death I said apoptosis. She gave me that look out of the corner of her eye like how did I know that? I told her I worked for the Cancer Prevention Lab at CSU and she said oh, okay you must know so-and-so, to which I nodded my head. She continued by going over side effects of 5-FU chemotherapy, which included diarrhea, nausea, mouth sores, low blood counts, appetite and taste changes, etc. Pretty soon it began to sound like one of those pharmaceutical commercials you see on TV where playful people are running along the beach while the narrator reads a litany of nasty side effects and you wonder what’s worse, the problem or the treatment. She gave me a shopping list of things that might help during treatment, e.g. ginger root or ginger pills to help combat nausea, soft toothbrush and baking soda to help prevent oral problems and moisturizer. I was pleased to learn that while my hair might thin during treatment I probably wouldn’t lose all of it.

5-fluorouracil (5-FU)

Port on the starboard side

Tuesday, 12/7/10

I arrived at the surgical center at 7:30 AM to fill out the obligatory paperwork, which was identical to what I had submitted for my colonoscopy the month before. While being prepped for surgery I had various nurses and doctors ask me a series of questions over and over again while scribbling on their clipboards and my response was always the same, no. I felt like saying yes just to change it up and see if they were paying attention, but I refrained. I did undergo general anesthesia, but the procedure lasted less than an hour. When I woke up in recovery my throat was a little irritated from the intubation tube. I had two incisions, one on the right side of my chest where I could see my spiffy new Bard Power Port protruding under the skin and a smaller incision just below my neck on the same side for the port catheter, which had been inserted into the right subclavian or jugular vein and threaded down into the superior vena cava just above the heart. Sleeping on my side was a little uncomfortable at first, but I think that had more to do more the Tegaderm cover pulling on my neck.

Left panel: frontal view of chemo port. Right panel: side view of chemo port.

“You go back, Jack, do it again…”

Monday, 12/6/10

When my plane landed in San Diego on Thursday I had a voice mail message on my phone. It was radiation tech. She had called to say that the IMRT mapping I had done that morning wasn’t successful and they would need to repeat the procedure on Monday using a different CT scanner. This wasn’t music to my ears, but such is life. On Monday, I arrived at the imaging center around 1:00 PM to be remapped. I was handed a gown and escorted to the dressing room. I attempted to put on the gown, but it was incredibly small and I could barely get it to go over my arms. I felt like doing my impression of Chris Farley in Tommy Boy, “fat guy in a little coat”. 

I opened the door slightly, peeked around and asked the tech if she had anything that wasn’t from the babyGap collection. All of the gowns were the same size so a bed sheet was the best she could do. I donned my Animal House toga and laid on the table feeling like a human sacrifice to the CT god. The alignment procedure took a few minutes to get my tats lined up. It wasn’t too long before the old back went snap, crackle & pop. Getting up off the table was difficult as usual and I kept thinking if I have to do this five days a week I’m going to need some Vicodin…paging Dr. House.

“Stay classy San Diego”

Sunday, 12/5/10

My wife and I spent four wonderful days in San Diego. We stayed in the Mission Bay area and the weather was great for the entire trip. Sea World was entertaining and we toured the Birch aquarium at Scripps in La Jolla. It was amazing to see such aquatic diversity, from beautiful corals and jellyfish to magnificent beasts like the killer whale. However, my favorite part of the trip was the two days we watched the sunset on the beach. There were a number of other people who chose to stop whatever they were doing that afternoon to watch the sunset. Some were seated on hotel balconies or sitting in the cars while others watched from the boardwalk, piers or the beach. All of us were there in silence just enjoying the moment as the sun descended below the horizon bathing the sky in rich hues of orange and purple…it was a wonderful experience.

The iTat

Thursday, 12/2/10

I arrived at the radiation oncology office and the tech took back to the CT scanner and gave me a one size fits none gown. As I stretched out on the table I warned her that my back might shift. She said it was okay as long as it didn’t happen during the scan. Sure enough, I was on the table about 5 minutes when I had to move my arms up and elbows in to clear the sides of the scanner and my back popped. The tech heard it pop and asked if I was okay. It was painful, but I just wanted to get it over with so I could start my vacation.

She continued with preparations, which included creating a mold of my lower legs using a bag with bead/foam-like material. The mold was used to keep my legs locked in the same position. In addition, three BBs were placed on my body, one on each hip and one on my groin, which were used to align the beam. Once everything was properly aligned, the BBs were removed and replaced with permanent tattoos about the size of a freckle. The leg mold and tattoos would be used at each subsequent visit to properly align the beam, thus minimizing radiation exposure to the healthy parts of my body.

Top panel: actual size of tattoo on left hip
Bottom panel: pseudo-magnified tattoo

It was rough getting up off the table after my back had shifted. I was doing okay until she handed me the treatment schedule. Twenty eight treatments, five days a week for five weeks. My back was killing me just thinking about it, but no time to lose. I had to run over to the surgeon’s office and see about getting scheduled for a port placement as I needed to start radiation and chemo treatments at the same time. I got it scheduled for the following Tuesday morning. I was done for the week and couldn’t wait to get out of town.

“California dreamin’ on such a winters day”

Wednesday, 12/1/10
My mind was still reeling from conversations I had with the surgeon and radiation oncologist. My wife and I had been thinking about getting out of town for a few days. We stayed up half the night looking for the best deal and finally in the wee hours of Wednesday morning we booked a flight to San Diego leaving that Thursday.

Later that morning I got a call from the radiation tech saying that I needed to come in for IMRT mapping on Thursday. I told her I was leaving town Thursday morning, but she was insistent. She said that she really need me to come in on Thursday and that she could get me in early at 7:00 AM so I’d have plenty of time to catch my flight.