Ken Larsen's Health Blog # 1
This lengthy blog documents my 2014-2015 neck cancer battle. Fortunately, it ends happily with a good PET scan that was taken on September 22, 2015. I am grateful to the UNC Oncology Department for saving my life. See the very end of this blog for how to donate to them.
In December of 2014 I learned that I have squamous cell carcinoma (cancer) in my left tonsil and in a neighboring left neck lymph node. Here's my story:
November 25, 2014: At my backgammon club Zoya Elmi saw me limping and started asking questions. I ran 4.5 miles earlier in the day and was limping slightly because I was slow in recovering from a summer track hip joint injury. Zoya asked me what my doctor said. I replied that I hadn't been to a doctor in many years (16 since my last physical). Zoya ripped into me for not seeing doctors. She sees them regularly. She shamed me into scheduling a physical. Good for Zoya! She is my angel.
December 11, 2014: At my physical (at UNC Family Medicine Center) I mention my left hip issue and a few other "minor things". One was an asymmetry in my neck. The left side felt more muscular than the right. I also felt an occasional "pizza burn" inside my mouth and would have slight difficulty fully opening my mouth. I was referred to an ENT (Ear, Nose, and Throat) specialist at UNC Hospital in Chapel Hill, NC.
At the December 11th physical I get a Tdap shot and a Pneumococcal Polysaccharide 23 shot. I declined a flu shot, but eventually got one on December 29th. I did not get a shingles vaccine, but it's recommended that I do.
December 12, 2014: I had blood work taken. All the numbers would come out great.
December 17, 2014: ENT specialist Doctor Mark Weissler does an ultrasound and biopsy of my neck. The diagnosis is squamous cell carcinoma in my left neck lymph node. He finds a mass in my left tonsil. It will need to be biopsied to see if it matches my lymph node.
December 19, 2014: I have a neck C-T scan taken. It confirms masses in left neck lymph node and left tonsil.
January 5, 2015: I have a chest C-T scan taken. It shows no cancer in my chest. Radiation oncologist Dr. Bhisham Chera tells me that the tonsil tumor is T1 N2b M0 (Stage 4). It is very tiny and is growing inward. Click here to see a picture of it. The chemotherapy drug to be used will be Cisplatin. I sign up for a research study which will limit radiation to six weeks (of 5 days/week) instead of the usual seven weeks. 180 mg of Cisplatin will be used instead of the usual 300 mg. Expected cure rate is 90%. I can expect to live one year if I don't undergo treatment. One side effect of radiation is osteonecrosis of the jaw. Bone may have to removed/replaced. Dental cavities may be caused by inadequate amounts of saliva.
January 8, 2015: During a general anesthesia surgical procedure, a biopsy is taken of the tumor in my left tonsil to see if it is HPV positive. The betting is that it is. Results will be available next week. The surgeon said today's procedure went well. After awakening from the procedure, I felt like crap (hungry, nauseous, swallowing soreness), but after a few hours and some food ... which took forever to eat ... I started feeling better and only took two Tylenol for pain.
January 8-13, 2015: My left jaw hinge has been in a lot of pain since last Thursday's biopsy surgery. I'm told that it will eventually get better and that ibuprofen is best, because most pain is caused by inflammation.
January 12, 2015: They run a radiation simulation and create a "radiation mask" for me to wear during my radiation treatments. It will secure my head to a fixed position when I'm undergoing radiation. To ensure accurate alignment they tattooed my upper chest with a small dot.
January 13, 2015: Dr. Chera calls me to tell me that my whole chemo/radiation treatment has been moved back one week to allow more time for my oral cavity to heal from my January 8th tonsil biopsy surgery. My treatments will begin on January 26th ... not January 20th.
January 14, 2015: I learn from Dr. Weissler (ENT) that my cancer is HPV positive. That's good news, because it's highly treatable .. albeit with radiation and chemotherapy. According to the neck C-T scan my tonsil tumor dimensions are 1.8 x 2.2 cm. Technically that's a T2. It leaped to two lymph nodes in my left neck. The insidious thing about HPV cancers is that they are not very visible. "They are silent in most people." They only become noticeable when they leap to a lymph node like mine did. My tonsil tumor was palpable to Dr. Weissler but not visible. This makes it outside of what a dentist could discover during an oral cancer screening. That's scary! People ages 12 to 21 should be vaccinated against HPV. The vaccination doesn't work in older people, because the virus is ubiquitous and has likely already invaded their bodies.
January 15, 2015: I learn that the strain of HPV that infected me was HPV 16.
January 22, 2015: I meet with Shannon Aumer to have a "barium swallowing test" and be shown some jaw exercises that I should do every day to minimize the effects on radiation and chemo on my jaw, swallowing, speech muscles. She also gave me some tips to help keep my mouth moist and promote good dental hygiene. Radiation will reduce my saliva output. Saliva is vital for oral health.
January 26, 2015: I have my first day of chemo infusion and radiation. I had dreaded this day, but it was actually a breeze ... no ill effects. It was a huge help that my friend Lynne accompanied me. She helped lower my stress level. The only thing that came close to freaking me out was the radiation treatment. They strapped my head to a sliding table using a form fitting plastic mask (made on January 12th). Part of the mask fit firmly across my neck, and it squeezed my entire face. That made breathing tricky, and that's what almost freaked me out. But, the radiation part only lasted 6 and a half minutes.
Here's a picture of a radiation mask:
I learn that I'll have radiation 5 days/week for six weeks, and I'll have chemo infusion every Monday for the same six weeks.
Other notes on this day:
In the morning I saved myself a second puncture of my arm during the blood draw by the telling the blood draw technician that I was shortly going to have an IV. They then used the IV to draw the blood instead of doing a separate stick for the blood draw. Whew!
I'm relieved today is over. The process of killing cancer cells has finally begun. I'm on my way to being healed. Cheers.
January 27, 2015 (Tuesday): I complete my second radiation treatment. Yesterday's first treatment was highly stressful, but now I know the routine, and I was relaxed. I tried to count my breathes. I got a total count of 152 from the time they strapped my head firmly place using the plastic radiation mask until radiation ended. The actual radiation didn't begin until my 70th breath. At 4.5 seconds/breath that equates to 6 minutes for the radiation part; 11.4 minutes for the whole strap-down of my head. That's not long.
January 28, 2015 (Wednesday): I complete my third radiation treatment. I was much more relaxed. I did an accurate count of 185 breathes from the time when they bolted my head down with the mask to the time it was over. The actual radiation began around breath 85.
January 29, 2015 (Thursday): I complete my 4th radiation treatment and followed it with a [every Thursday] consult with my two radiation doctors (Dr. Chera and Dr. Miller). My weight is up 3 pounds to 160. The doctors noted the nasal sound of my voice and found that it was caused by the hole in my tonsil that was made by the January 8th tonsil biopsy. They expect that it will eventually heal. They said that my tonsil tumor was caught early and is very small, so that they expect me to be cured. Cheers!
January 30, 2015 (Friday): I complete my 5th radiation treatment (out of 30 total) and am through with my first week (of 6 total weeks) of treatment. I was a little woozy today from the chemo, radiation, and anti-nausea medicine. Today, Saturday, and Sunday I won't have any treatments nor will I need to take any medicine. I can rest.
January 30-February 1, 2015: This has been the weekend from hell! I consumed a half a pizza on Friday afternoon [not smart - particularly without stool softeners] and then spent the rest of the weekend struggling to pass it. I finally was able to partially pass it beginning on Saturday morning using Vaseline and my index finger. I had to repeat that ugly process numerous times throughout Saturday ... taking numerous hot showers along the way. I ate virtually nothing and slept just a little.
February 1 (Sunday): The worst of the stool passing is over. I got more sleep Saturday night. The chemo anti-nausea meds have a side effect of constipation. I learned that to be correct. I will confer with my doctor today to help me cope better.
10:15 AM: I finally have a decent bowel movement. Whew! Now I can rest and focus on nutrition.
10:40 AM: I take a tablespoon of olive oil. It's supposed to be a good natural relief for constipation.
10:52 AM: A UNC fellow calls me and gives me some good advice on my constipation issue and will write two prescriptions (Senna and Colace). Because I don't have pain or bleeding, I won't need an "evacuation procedure" at the hospital.
February 2 (Monday): I begin week 2 of 6 with IV fluids, chemo infusion and then radiation. They found my weight to have dropped to 153 ... down 7 pounds in just four days! That's all due to this past weekend's impacted stool debacle. All my other numbers were good. My BP was 118/70. blood oxygen was 99, temperature was 98.4F, and all the blood components were good. I met with a nurse practitioner who advised me to take two Senokot-S tablets (an over-the-counter combination of the Senna and Colace that was prescribed for me yesterday) prior to bedtime throughout my remaining treatment ... possibly adding two more in the morning if needed. Senokot-S is a "natural vegetable laxative plus stool softener". I also met with a dietician who gave me a copious amount of advice. The main change I'll have to make is to increase my consumption of protein. When I told her about my frequent making of smoothies, she gave a thumbs up but advised a few changes to increase the protein content. She also requested keep a log of my daily food/beverage consumption with a goal of 70-90 grams of protein and 2100-2400 calories each day. In response I began a Microsoft Word document to collect it. Last week I began a similar document to keep track of all the meds I'm taking ... listing everything consumed by day and time.
In the evening I had a temporary vision issue. A floating 3-D image of a solid black tangled thread appeared. It eventually broke up into many tiny black dots and floated away.
February 3 (Tuesday): I slept poorly ...only getting a few hours of sleep. My mind is racing a mile-a-minute. I'm too "wired". Normally my life revolves around plenty of exercise (running 4.5 miles thrice weekly plus gym workouts on the other days) and take no meds at all. Sleep is not an issue. Now my brain is doing the exercising and I'm on meds. It's screwing up my sleep.
Today was day 7 of my 30 treatment days. It was radiation only. Upon exit from radiation a nurse and a research worker gave me an Nexus 9 device for me to record daily symptoms. Then, on Tuesdays after radiation I'll meet briefly with them to upload the collected data and review what transpired in the past week. A month ago I volunteered to be one of UNC's guinea pigs for their cancer research. It would be great if my experience can be used to benefit other victims of cancer. More people should do so that to improve cancer research.
Issues today: My voice hasn't returned to normal. Dr. Chera characterized it last week as nasal sounding. It still is. My throat is slightly beginning to feel irritated ... from the radiation. I need to focus on the jaw exercises that were given to me on January 22nd. This past weekend's constipation problem threw me off them.
February 4 (Wednesday): I slept better. Bowel movement is back to normal. The only discomfit I have is a very slight sore throat irritation (from the accumulated radiation) when I swallow. However, as the day wore on I became increasingly weak ... anemic ... taking a nap in the early afternoon. After radiation treatment #8 I ate a large Asian chicken salad and a milkshake at a restaurant. It was great and boosted my energy level, but because of my throat irritation it took a long time to eat it. I may soon have to switch to just liquid consumption.
February 5 (Thursday): Went for a one mile walk in my neighborhood. It was great to go for a walk outdoors, but I felt very weak at the end and took a nap. When healthy, I run 4.5 miles without any issues. In the staff review after today's radiation treatment I learned that my weight is now 151.5 and that I have a fungal infection (called Thrush) in the area where my tonsil biopsy was taken. I was prescribed Fluconazole - one tablet/day for 7 days. That should fix the problem. That fungal infection has contributed to my voice and swallowing issues. I picked up the prescription and began taking it. At today's review I was also given samples of something called GI Cocktail [Carefate, Lidocaine, and Maalox]. Its intent is to make swallowing less painful. Over the remaining four weeks of my treatment my throat will become increasingly sore from the radiation.
February 6 (Friday): Sleep deprivation continues. I get up to urinate and then can't get back to sleep. It's very frustrating. This morning I tried the GI Cocktail. It soothes my throat ... making swallowing less painful. However, the GI Cocktail is just a temporary fix that must be taken 15 minutes before eating. I was advised yesterday to focus on Boost for nutrition ... try to consume 5 bottles/day. It's loaded with protein and vitamins. Beginning today I will comply. I will also begin gargling with a salt/baking soda/water mix that is needed to compensate for diminished saliva production (caused by the radiation). I'll need to gargle 12 times/day.
February 7 (Saturday): I finally got some sleep, but I'm feeling anemic. My plan this weekend is sip Boost, sip water, and nap over and over again. Tiny sips are all I can tolerate. I'll have to take many sips, because they want me to consume 5 bottles of Boost (40 oz) and 64 oz of water every day. Yesterday I only did 2 bottles of Boost, and I could barely stand up after I returned home from radiation.
February 8 (Sunday): Throat is sore from radiation. All I can do is sip liquids a tiny bit at a time. I took a Tylenol extra strength capsule, and it helped a bit. I will confer with my doctors tomorrow about pain relief. I have four more weeks of treatment. Pain will get worse. Radiation and chemo have left me with little enthusiasm for food and drink. Nothing tastes good (Dysgeusia = "altered taste"), and it's become an arduously slow process. In other news, my voice still hasn't returned to normal. It's like my tongue is partially paralyzed. I did go for a walk around the block today and rested outdoors in beach lounge chair enjoying the warm sun. It was 67 F today.
February 9 (Monday): At the hospital today I had blood work, IV fluids, Chemo infusion, and then radiation. While I sat for the IV work, I met with my nurse practitioner (second meeting), a pharmacy person (a fellow runner and Facebook friend), and a dietician (second meeting). My weight has further dropped to 145.1. Blood work revealed that I was dehydrated, so they gave me two liters of IV fluids instead of the usual one liter. That lifted my energy level considerably. The rest of the blood work showed all good values. My weight loss (15 pounds in just two weeks) has my health team very concerned .. particularly since I'm a skinny guy to begin with. They prescribed a daily dose of Tylenol PM prior to bedtime to deal with pain and sleeping issues. To improve my nutrition intake, it'll be up to me. There are no drugs I can take to enhance appetite. If all I can do is nibble or sip a tiny bit at a time, I must not give up. I must nibble and sip continually all day to consume 64 oz of water and 5 to 6 bottles of Boost each day. If I can't do that, then the only other option is a feeding tube. That would entail a surgical procedure. I want to avoid that. Earlier while awaiting entry to the infusion ward I made a serendipitous discovery. My friend Lynne brought me a small box of apple juice. As I sipped it through its thin straw, I found that the straw improved the speed of my sipping. Cheers to that. My Thrush issue has been cured by the Fluconazole according to my nurse practitioner. Regarding my voice issue: She regards that as being caused by the hole in my throat caused by the January 8th biopsy. Nothing will be done about it until my radiation and chemo treatments are over. That's okay.
February 10 (Tuesday): At 6:15 AM I tried to consume some Quaker microwaveable oatmeal, but my throat burned as I tried to swallow it. 30 minutes earlier I preceded my intake with a half tablespoon of GI cocktail, and then I took another half tablespoon when the burning hit, but the burning continued. At 7:44 AM I take an oxycodone pill - my first since treatment began. Thumbs up to Oxycodone. Thumbs down to GI cocktail. Today's radiation treatment was followed by staff review (normally done on Thursdays). Dr. Chera said my voice sounded better. My weight was 148.4 (thanks to yesterday's second liter of IV fluids). To get me through the next three weeks of treatments I'll need to consume 6 bottles of Boost/day and take pain meds (oxycodone) every four hours. The pain meds should improve the speed of my food consumption. I'll have to continue with pain meds for several weeks after treatment ends, because cell death and pain continue after radiation is over. That's why recovery takes 6-7 weeks. I was advised to begin applying skin cream to my face and neck area. Radiation will soon begin irritating the skin.
February 11 (Wednesday): I'm now taking oxycodone for pain relief. It permitted me to enjoy some oatmeal this morning, and I felt more energetic the whole rest of the day. It was my best energy day since treatment began. The pain relief provided by an Oxycodone 5 mg pill is 4 hours. Then I have to take another pill, and it takes 30 minutes to kick in. Maintaining such a schedule can be tedious. Yesterday I learned that a patch is available to dispense pain relief in a slower more continuous manner. That will be a great solution in the upcoming weeks when the pain level goes up due to the accumulated effects of radiation.
As reported earlier, Boost will be my primary source of nutrition until treatment is over, and I have time to recover. They want me to consume 6 bottles of Boost each day. I found that this Boost task can be more pleasant if I alternate swigs of Boost with swigs of Gatorade.
Weight issue: Yesterday I was cheered by my weight rise from 145.1 to 148.4 in just one day. Most of my low 145.1 was due to dehydration, and I was given two liters of IV fluids on Monday. Today I realized that when I was weighed on Monday I wore a light pair of pants. Yesterday I wore jeans. The jeans are heavier. In some of my early weigh-ins I wore a long sleeve flannel shirt. For recent ones I've been wearing a short sleeve summer shirt ... which is lighter. For the sake of consistency, henceforth I'm going to wear the same clothes on weigh-in days. I always empty my pockets prior to weigh-in. I heard that Duke Medical has patients remove their shoes prior to weigh-in. UNC doesn't.
February 12 (Thursday): Feeling good. Turbulence of the first two weeks (constipation, sleep deprivation, pain, nutrition, dehydration) has been addressed by various aforementioned solutions. Went for a one mile walk around the neighborhood. Later I did 100 ab crunches and 10 pushups. After my radiation treatment I cooked myself a cup of penne pasta along with tomato basil sauce and looked forward to eating it. I look an oxycodone pill 30 minutes earlier to take care of the throat pain. Unfortunately the pill had little effect. It was like I took a placebo. But, I persevered and finished the meal ... drinking lots of Gatorade along the way. It took me 90 minutes to finish it. Fortunately, they're only radiating the left side of my throat.
February 13 (Friday): First thing this morning I took a 5 mg oxycodone pill and used a stopwatch to find that it took 21 minutes to kick in (feel woozy), but I found it didn't help me consume oatmeal ... still hurt my throat. I finished the oatmeal nonetheless. It just took me a long time. Oatmeal is too rough on my throat. Curiously, I can consume Boost without irritation. I didn't take any more oxycodone today. In the afternoon I had another rough bout of constipation. That drained my energy. Today was treatment day 15 of 30, so I'm half way through the treatments. Cheers.
February 14 (Saturday): Got up at 2 AM and was hungry, so I made myself a 20 oz smoothie (bananas, strawberries, blueberries, kale, Kefir yogurt, and Boost). Sipping was painful, so I took an oxycodone ... which took 30 minutes to kick in. I ended up sipping on this smoothie the rest of the day. I was going to take a Tylenol PM tablet prior to bedtime ... the Benadryl in it promote sleeps ... but the Benadryl has a dehydrating effect. I need hydration, so I passed on it. For hydration, I've been drinking Gatorade. I took four oxycodone throughout the day, but none relieved pain on left on my tongue's base.
February 15 (Sunday): I've told that I need to consume 6 bottles of Boost every day and ensure that I drink 64 oz of fluid. It's proving to be a struggle. I can only sip a little at a time. The most I've been able to down is three bottles of Boost in a day. If I keep losing weight, they want to insert a feeding tube, a surgical procedure they've scheduled for February 25th. I don't want a feeding tube. I'll keep sipping. I will speak to my doctors on Monday about upping or changing my pain medicine. The 5mg oxycodone is not strong enough to deaden my throat pain, and I don't want to change anything on own without their approval.
February 16 (Monday): Almost 8 hours at the hospital - blood work, measuring, consultation, IV fluids (2 liters), chemo infusion (only 2 more to go), and finally radiation (14 more to go). My weight was 143.8, blood pressure=122/74, blood oxygen=97, temperature=98.1F. All blood numbers were fine. I got the green light from Dr. Hayes (my chemo doctor) to take two 5g oxycodone pill instead of the one I had been taking. I need more pain relief. Swallowing has become arduous. They still want me to have a feeding tube. It's scheduled for February 25th. I'll see if the increased pain medicine can help me consume more food. I don't want a feeding tube.
February 17 (Tuesday): I begin the day by taking two 5mg oxycodone instead of the usual one. It kicked in after 22 minutes. I'm feeling real loopy. I'm beginning to change my opinion about the feeding tube. Drinking and eating food one tiny morsel at a time (even with pain meds) is an extremely poor way to intake the nutrition I need. I've dropped too much weight, and the worst weeks are ahead of me. Fortunately, the feeding tube will be removed after my recovery is over and my eating issues (caused by the radiation and chemo) have been resolved. I just have to be patient and not be such a sissy about the feeding tube. From YouTube videos, I've learned the feeding tube has been welcome relief to many people. One of my friends has been using one for 17 years, and she's doing great ... and has a positive attitude. I'll only need one for about six weeks. If I can adopt her attitude, I should be able to do fine.
(65 minutes after taking two 5mg oxycodone): I try to eat some apple sauce, but the pain on the left base of my tongue is still there. Bummer. I won't take a third oxycodone. I'll go ahead with the February 25th feeding tube surgery. Between now and then I stick with Boost and other liquids for nourishment.
I have my 17th radiation treatment ... leaving just 13 more to go. I told the radiation people about my February 25th feeding tube insertion (through my stomach). They will moved up my February 25th radiation to 11:10 AM on that day.
February 18 (Wednesday) Met with dietician Jennifer Spring to get educated on how to use the feeding tube (aka G-tube) that will be inserted in me on Feb 25. She was very thorough and gave me a written summary along with a link to this instructional video produced by the MD Anderson Center She also tested me with a sample feeding tube. I'm now looking forward to the G-tube as it will solve my nutrition issues. After our meeting I had my 18th radiation session. Just 12 to go.
February 19 (Thursday) I picked up two cases of Boost PLUS at the UNC Nutrition Support Center. I had stockpiled up on regular Boost from Wal-Mart, but the PLUS has 50% more calories. I need the extra calories, as my weight was 141.5 today. It would have been less, but I was wearing a sweatshirt and jeans and didn't empty my pockets. My number one job between now and my Feb 25th G-tube surgery is to not lose any more weight. I've got to force myself to drink at least three Boost PLUSs every day and intake adequate water. From Dr. Chera and Dr. Miller I learned that I should take one 5 mg oxycodone every 3-4 hours each day. I was taking them only when I felt the need for pain relief ... not on a regular basis. My lack of consistency was contributing to my pain issues.
February 20 (Friday) I completed my 4th week of treatment. Just 2 more weeks to go!
February 21 (Saturday) The ravages of four weeks of chemo and radiation have built up. I've lost 20 pounds, my oral cavity has either sticky mucus or none at all, everything tastes bad (Dysgeusia), and eating solid food hurts due to radiation burns. Pain medicine leaves me loopy and doesn't alleviate all the pain. Yesterday I tried to take the oxycodone on a more regular basis (every four hours), but that left me even more loopy, and I almost threw up. Lastly, I'm still a little constipated. Today will be a whole day of sipping on water and Boost PLUS. A week ago I was adamantly against having a feeding tube (aka G-tube). Now I'm welcoming its insertion (February 25). It'll permit me to hydrate and nourish myself without using my oral cavity. I should have had it installed a couple of weeks ago.
Today was a very poor day for me nutrition and hydration-wise. I only consumed one Boost-PLUS and half a bottle of water. Everything tastes wretched due to the Dysgeusia. I didn't have any pain issues, so I didn't take any pain meds. Pain meds are making me nauseous.
February 22 (Sunday) I took an oxycodone and then began trying intake more water and Boost PLUS. I have to proceed very slowly to avoid coughing and gag reflexes. I tried sipping on a flavored carbonated water called Sparkling Ice. I liked it, but then I almost vomited. That prompted me to take my first Prochlorperzine tablet, an anti-nausea drug. I hadn't been bothered by nausea in my first four weeks of treatment. The two anti-nausea meds I take on the three days following chemo had been working. I didn't need to take Prochlorperzine. It was a backup. Today I needed the backup.
February 23 (Monday) My 5th and penultimate chemo infusion treatment. Next Monday will be my last! I really despise what chemo has done to my sense of taste. Everything tastes horrid, and that has caused my weight to plummet, because it's hard to ingest more than a few tiny bites of anything without gagging. Today I weighed 135.5. It would have been more like 134 if I had emptied my pockets and not worn a heavy sweatshirt. [My pre-treatment weight was 160.] My blood pressure was 110/71. My blood work numbers were all good except that my white cell count was 3.4. Normal falls between 4.5 and 11.0 10*9/L. Today was the first time it fell out of range.
I got and had filled a prescription for a narcotic pain medicine patch (Fentanyl). It will slowly leak pain medicine into my body over several days ... thus saving me the drudgery of having to monitor a clock to time the intake of pain pills. I was poor at that, anyway. Pain meds are needed to address radiation burns on my throat and tongue. That's been the other impediment to my being able to intake sufficient nutrition.
The feeding tube (aka G-tube) will be inserted On February 25th. It will solve the aforementioned problems by simplifying bypassing them. I should have had it installed two weeks ago, but I was stubborn. My treatments will end on March 6th. One might question the need for a feeding tube with just days left to go, but the cumulative effects of chemo and radiation will continue to ravage my system for several more weeks. The feeding tube can provide adequate nutrition during this recovery process. Eventually it will be removed. During the latter stages of the recovery process I'll attempt to ingest more and more food via my mouth ... to slowly wean myself off the feeding tube.
At 7:44 PM I take a 5mg Oxycodone tablet. It made me loopy after 25 minutes. Then at 9 PM I tried to consume a Special K Chocolate Caramel Protein Meal Bar. Chocolate and caramel are my favorites. Eating it stung the left side of my tongue something awful. This is only real pain that I've had, and it only occurs when I try to eat solid food. When I'm not eating solid food, I don't have any pain. This is the way it's been going. I so long for a return to being able to eat normally! Tonight's debacle leaves me highly dubious that the pain patch is going to do any good, but I'll give it a try beginning tomorrow morning. Each patch purportedly lasts three days. Then it must be replaced with another patch.
February 24, 2015 (Tuesday) At 6:25 AM I apply a Fentanyl pain patch to my left tricep. 90 minutes later I try to eat some chilled apple sauce, but it felt like someone took a flame thrower to my throat. I must be immune to narcotic pain medicine. This is not good. Fortunately the feeding tube will be installed tomorrow. I also have only 9 more radiation treatments. I've had 21 thus far.
Due to snow and icy road conditions, I canceled today's 4:10 PM radiation treatment. This will move my last treatment to Monday March 9th instead of Friday March 6th. This is no big deal.
Tuesday evening: I have to drink 1.5 cups of barium tonight to provide contrast during tomorrow's feeding tube surgery. It's a very laborious task considering that everything tastes wretched (Dysgeusia), and the patch pain medicine has done zilch to alleviate pain from the radiation burns. I've been sipping the barium two sips at a time for the last four hours. Anything faster might cause me to gag.
February 25, 2015 (Wednesday) Radiation treatment followed by surgery to have a feeding tube installed. Pre-surgery I weighed 135.5 pounds. Surgery went well. I spent the night at UNC Memorial Hospital where the nurses looked after me. I received continuous IV fluids during the night and made many trips to urinate. Except for some abdominal pain ... like someone had punched me ..., everything is fine. During the night six inches of snow were dumped on Chapel Hill.
February 26, 2015 (Thursday) At 10:45 AM I got discharged from the hospital and was wheeled to radiation for that treatment. Neighbor Cort Boylan braved the snow and slushy conditions to drive me home ... where we found neighbor Mark Hollins shoveling my drive and walk ways. I have great neighbors! Cheers to them and the others who have given me rides during this difficult time for me.
I used my feeding tube to intake water and Milk of Magnesia (needed to flush the cement-like barium out of my system). The tube is so easy and quick to use that I feel like a dope for ever resisting its insertion. On Friday after the barium exits, I can use the tube for nutrition (Boost PLUS), water, and ground up pills.
February 27, 2015 (Friday) In the morning I took more Milk of Magnesium (MOM) to promote a bowel movement to extricate the barium, but no success. I replaced my Fentanyl patch (it lasts 3 days), but then promptly got nauseous when I tried to drink something. Me and pain-killers don't get along. At 3:10 PM I remove the patch. I've been hydrating myself every four hours via the G-tube. It works well. I got clearance to try Boost PLUS despite not having passed the barium. Between 5:30 and 5:50 I consumed my first box of Boost PLUS via the G-tube. It went well.
February 28, 2015 (Saturday) 6:45 AM: I have a very runny bowel movement. 7:20-7:35 AM: I ingest a box of Boost PLUS via the G-tube ... preceding and following it with 2 oz of water. 10:10 AM: 2 oz of water via G-tube. 11:35 AM: 2nd Boost PLUS preceded and followed by 2 oz water. It's a 15 minute procedure because of the thickness of the Boost. Water alone only takes a minute. 1:28 PM: 2 oz of water. 3:15-3:30 PM: Boost PLUS #3 5:07 PM: 2 oz of water. 6:30 PM: Boost PLUS #4. At 7 PM I had another runny BM. 8:17 PM: 2 oz apple juice
March 1, 2015 (Sunday) 1:15 AM: I apply a Fentanyl patch again. The left side of my tongue has been burned by the radiation. Fentanyl leaves me sluggish but really doesn't fix the radiation pain. This is very aggravating. By 6:15 PM I've consumed five boxes of Boost PLUS via the G-tube. I love the G-tube.
March 2, 2015 (Monday) Weight: 134.3 lb, BP: 113/70, Oxygen: 100%, Temperature: 97.9F Blood work showed that I was severely dehydrated. That puzzled me, because I've been using the G-tube to hydrate myself, but Dr. Hayes told me that my hydrations should be with 8 oz of water x 4 times/day. I had been hydrating with only 2 oz of water. Regarding pain medicine: I should take oxycodone as needed to supplement my Fentanyl patch. I hadn't been using both at the same time.
Today was my last chemo infusion (#6 of 6) and radiation treatment #25 of 30. I just have 5 radiation treatments left. Cheers!
March 3, 2015 (Tuesday) Thanks to the G-tube feeding, my weight today was 139.7 lbs, and my blood pressure was 120/67. Nurse Elaine Roth said I was doing amazing well. Just four more radiation treatments to go. I consume 5 Boost PLUS and 3 cups of water (8 oz) via the G-tube.
March 4, 2015 (Wednesday) I wonder if the left exterior of my neck will ever be the same. It's been horribly burned by the cumulative effects of the radiation. I still have four radiation treatments left to go. I've been applying Aveeno Skin Strengthen cream, but it's no match for the radiation.
March 5, 2015 (Thursday) I'm lethargic today. As of Noon I've consumed 3 cups of water and 2 containers of Boost PLUS plus took some naps. Monday blood work showed that my white blood cell count was 3.0 (normal is 4.5 to 11.0) and platelet count was slightly below normal (147; normal is 150 to 440). I was severely dehydrated on that day. I coughed a lot on this day.
Today's radiation treatment was followed by staff consult. My friend Lynne took these notes: Weight was 137.4 lbs, temperature 98.6 F, oxygen 98%, heart rate 91/92, blood pressure 102/56. From Dr. Chera: Your skin burns could heal in two weeks. From Mary Fleming: You will have weekly appointments with either/or Dr. Hayes and Mary Fleming. You will see Dr. Chera again in 6 weeks. You will have a scan in 3 months. Pain will continue for a couple of weeks. It will be several weeks before you feel better. The skin on your neck will heal first.
March 6, 2015 (Friday) Penultimate radiation treatment. It wasn't
an easy day. I had another nasty constipation problem. I
neglected to take my Senokot-S the previous few days and paid for it.
That kept me up most of Friday night. However, I did consume six Boost
PLUS today - my record.
March 6, 2015 (Friday) Penultimate radiation treatment. It wasn't an easy day. I had another nasty constipation problem. I neglected to take my Senokot-S the previous few days and paid for it. That kept me up most of Friday night. However, I did consume six Boost PLUS today - my record.
March 7, 2015 (Saturday) More constipation + I vomited in the morning.
I'm limping towards the finish line. My last treatment (radiation)
will be Monday March 9th.
March 7, 2015 (Saturday) More constipation + I vomited in the morning. I'm limping towards the finish line. My last treatment (radiation) will be Monday March 9th.
March 8, 2015 (Sunday) This has been another weekend from hell.
I've battled constipation all weekend. I finally had a good bowel
movement at 10 AM today thanks to Milk of Magnesia twice yesterday and
Miralax early this morning. In avoid complicating the constipation I
didn't take any Boost PLUS yesterday. I have been taking 8 oz of water
periodically. Boost PLUS is too thick for me. I need to find the right
schedule for Boost and water. Constipation issues are wrecking me.
March 8, 2015 (Sunday) This has been another weekend from hell. I've battled constipation all weekend. I finally had a good bowel movement at 10 AM today thanks to Milk of Magnesia twice yesterday and Miralax early this morning. In avoid complicating the constipation I didn't take any Boost PLUS yesterday. I have been taking 8 oz of water periodically. Boost PLUS is too thick for me. I need to find the right schedule for Boost and water. Constipation issues are wrecking me.
I consumed just 3 bottles of Boost and 4 x 8 oz of water via my feeding
tube. I didn't want to run the risk of another constipation problem.
I'm still recovering from this weekend's problem.
I consumed just 3 bottles of Boost and 4 x 8 oz of water via my feeding tube. I didn't want to run the risk of another constipation problem. I'm still recovering from this weekend's problem.
March 9, 2015 (Monday) Today was supposed to be my last treatment day, but the radiation machine was down, and I'll have to return in the morning. I had IV fluids today instead. My weight was only 132.9, temperature: 97.3F, BP: 111/67, oxygen: 98%, and heart rate: 88. Amusingly, the downstairs of my house has developed its own constipation problem. The toilet and bathtub have both backed up. A plumber will arrive tomorrow to address these issues. I will use the upstairs bathroom.
March 10, 2015 (Tuesday) Radiation machine is projected to be down all day again today, so my last treatment has now been moved to 8:50 on Wednesday March 11. Two I consumed seven 240 calorie Boosts. I've switched to them until my bowel movements become more stable. My lower left jaw has been really hurting. In other news, two plumbers cleared the blockage that was present under my house, but they'll have to return tomorrow, because after they left I found that the blockage affects my utility room area, as well.
March 11, 2015 (Wednesday) 9:05 AM: Treatment is over! Cheers! Today was my 30th and last radiation treatment. March 2nd was my last chemotherapy treatment. I ring the gong in the radiation lobby and get pictures and video taken. Many thanks to all my friends and neighbors who drove me to my appointments. You're the best. Sign me up to drive you to any errands that you need. I owe you a lot.
Coincidentally, my mom died of ovarian cancer 29 years ago on this very day.
Picture of a very emaciated me (133 lb). My normal weight is 160 lb. I'm holding the mask that secured my head during radiation treatments, and I'm standing in front of the gong that I'd ring to signify the end of treatment.
Video of me banging the gong.
Picture of my friend Lynne Trussell. She drove me to and from all six of my chemotherapy sessions, two surgeries (biopsy and feeding tube), plus several other sessions and errands, and took copious notes. Kudos to her for her hours of help.
March 12, 2015 (Thursday) I returned to UNC to have a brief status check. My weight was 133.7 lbs and BP was 96/62 seated and 103/62 standing. The nurse said I was dehydrated. I blame that on a Acetaminophen PM pill I took last night. After taking it I ended up having to get up and pee numerous times during the night. Jaw soreness, Dysgeusia (distorted sense of taste - everything tastes awful), and a 27 pound weight deficit are my biggest issues as my recovery begins. Today I walked 3/4 of a mile in my neighborhood. I consumed 7 bottles of 240 calorie Boost High Protein.
March 13, 2015 (Friday) From notes my friend Lynne took, the optimal intake of Boost and water should be Boost every three hours with 8 oz of water intaked midway between the first four Boosts. For example:
7:00 AM: Boost preceded and followed by a 2 oz flush of water.
8:30 AM: 8 oz of water
10:00 AM: Boost preceded and followed by a 2 oz flush of water.
11:30 AM: 8 oz of water
1:00 PM: Boost preceded and followed by a 2 oz flush of water.
2:30 PM: 8 oz of water
4:00 PM: Boost preceded and followed by a 2 oz flush of water.
5:30 PM: 8 oz of water
7:00 PM: Boost preceded and followed by a 2 oz flush of water.
10:00 PM: Boost preceded and followed by a 2 oz flush of water.
March 14, 2015 (Saturday) Recently I've been bothered by frequent urination. This past night I used a counter and found that i had to urinate 17 times! Volume was pretty good, so I don't know what's going on. I initially presumed it was Acetaminophen PM, but I stopped taking it. I'm taking two senokot-S before bed. In the past week I've been consuming the 240 calorie Boost, but beginning today I'm returning to the 360 calorie version.
March 16 (Monday) Saliva is very non-existent. Radiation did that to me. Hopefully it and my sense of taste will eventually come back. I consumed six Boost 360 calorie containers each of the last three days. I've been doing a lot of coughing/gagging. The first two weeks of recovery are going the way I was told - they're the worst. Calories consumed today: 2160
March 17 (Tuesday) Calories consumed: 2160 (6 Boost PLUS)
March 18 (Wednesday) Blood work and measuring day. Weight: 132.6 lb, BP: 100/65, heart rate: 86, oxygen level: 98, temperature: 97.8F. White cell count was 1.8 - below the normal range of 4.5 to 11.0. Red cell count was 3.96 (normal is 4.50 to 5.90). I was disappointed that my weight wasn't higher, because I've been consuming 6 eight-ounce containers of Boost PLUS 360 calorie for each of the last five days. The nurse said my color and skin looked better than a week ago. She expects that I won't started feeling better until the end of the next week. Calories consumed today: 2290 (6 Boost + 130 in a juice)
March 19 (Thursday) Calories consumed (via feeding tube): 2550 (6 Boost PLUS + 3 x 130 juice) Left interior oral cavity still feels sore from radiation effects.
March 20 (Friday) 2470 calories consumed - all via feeding tube. Left rear tongue is sore.
March 21 (Saturday) 2470 calories consumed - all via feeding tube.
March 22 (Sunday) 2550 calories consumed (6 Boost PLUS + 3 x juice)
March 23 (Monday) 3040 calories consumed (7 Boost PLUS + 4 x juice). Left rear tongue didn't hurt as much.
March 24 (Tuesday) 2420 calories consumed (6 Boost PLUS + 2 x juice). Mowed lawn.
March 25 (Wednesday) blood work and measuring day. Weight: 137.0 lb, BP: 100/63, heart rate: 82, oxygen level: 99, temperature: 97.6F. White cell count was 4.1 - close to the normal range of 4.5 to 11.0. Red cell count was 3.79 (normal is 4.50 to 5.90). Calories consumed: 2290
March 26 (Thursday) 2550 calories consumed (6 Boost PLUS + 3 x juice)
March 27 and 28 (Friday and Saturday) 2290 calories each day (6 Boost PLUS + one 130 calorie juice).
March 29 (Sunday) Horrible coughing fit in the middle of the night. Mucus/saliva is thick. I finally began drinking via my mouth - consuming a few sips of a carbonated flavored water drink named Ice. Sleeping is hard, because I have to urinate between 10 and 15 times each night.
April 1 (Wednesday) I've been battling coughing fits .. trying to cough up thick mucus. It's so annoying. Also, the skin on my left ear is very dry and flaking.
April 2 (Thursday) I ordered a digital scale from Amazon, and it arrived yesterday. First thing this morning I weighed myself. Nude I weighed 131.8 lb. With clothes that I wear to UNC weigh-ins I weighed 135.6 lb. With my sleep apparel (shirt, sweatshirt, pajama bottoms) I weighed 134.0 lb. I was expecting higher numbers, because the scale (Eat Smart Digital Bathroom Scale) has high reviews on Amazon, and I've been consuming over 2100 calories every day via Boost PLUS. However, I've had a cold. It's a runny nose and a horrible hacking cough. Recently I began taking Vicks Nyquil at night and Tylenol Cold Multi-Symptom Daytime during the day. I'm still urinating between 9 and 12 times during the night. Lastly, my stool is yellow and has been since I began living on Boost.
April 3 (Friday) My weight in pajama apparel on my new digital bathroom scale is 134.4 lb. I'm going to weigh myself like this every morning before I consume anything. Yesterday this weight was 134.0. At 3:30 PM I called UNC to alert them about my hacking cough and yellow stool issues. The stool color was deemed normal, and over-the-counter cough medicine can treat the cough - particularly since I neither have a fever nor dark mucus. I consume 6 Boost PLUS (6x360) plus 24 oz of Gatorade (3 x 130) = 2550 calories
April 4 (Saturday) My pajama apparel weight this morning was 134.6 lb. I'm still coughing like crazy. Mucus is thick but clear.
April 5 (Sunday) My pajama apparel weight this morning was 135.6 lb. It was 139.0 lb before I went to bed last night. During the night I urinated 10 times, and measured the total volume as 43 ounces. Cold medicine resolved my coughing problem, but I still coughed up a lot of thick mucus. The soreness on the left side of my tongue has gone away.
April 6 (Monday) For the first time in weeks I tried to eat something by mouth, but it didn't go well. I took a few bites of a Special K Protein bar, but I couldn't tolerate it. I found it extremely dry and hard ... probably because my lack of saliva.
April 7 (Tuesday) At 4 AM I had another horrid coughing fit. I finally took enough Vicks Nyquil to get me back to sleep. The rest of the day was cough mode. It doesn't seem like I'm every going to get better.
April 8 (Wednesday) My pajama apparel weight this morning was 136.2 lb. My weight is going up but at a very slow rate. I coughed so much that I pulled a muscle in my right abdomen. My mucus is clear, and I have no fever, but these coughing fits have been going on and on since March 5th.
April 10 (Friday) Yesterday I bought a cough suppressant (Delsym) that was highly touted and seems to work. However, my right side stitch has become very painful ... when I cough or move in certain ways. At 4:28 AM I take an Oxycodone pill for pain relief. It's my first pain pill in many weeks. It didn't eliminate all the pain, but it was a great help. At 10:48 AM I take another Oxycodone pill.
April 11 (Saturday) My pajama apparel weight was 136.6 lb this morning.
April 12 (Sunday) My pajama apparel weight was 135.4 lb this morning. That's heading in the wrong direction! I may have to ingest 7 Boots PLUSs each day and not just 6. Six is 2160 calories which should be plenty to increase my weight, but I urinate so much at night (9 to 15 times). Seven would be 2520 calories. I'll be meeting with Dr. Weissler (ENT) on Wednesday.
April 13 (Monday) My pajama apparel weight was 136.6 lb this morning. Last night I had another horrendous coughing fit. This evening I'm having another one. These coughing fits are aggravating and drain my energy. I have very little saliva. My bowel movements are normal, but the color is yellow/light brown.
April 14 (Tuesday) My pajama apparel weight was 135.2 lb this morning. I made 13 trips to urinate last night. [Prior to feeding tube installation and my liquid diet, I'd only go 2 or 3 times.] Add my periodic coughing fits, and my recovery hasn't gone well. I haven't made any progress. I feel very anemic. Fortunately I have a doctor's appointment tomorrow (Dr. Weissler) and another (Dr. Chera) next Tuesday. Hopefully they can put me on a better path.
April 15 (Wednesday) Checkup with Dr. Weissler. He said I was doing well and that recovery will just take time. He prescribed dextromethorphan and mucinex for my cough and thick saliva issues. My weight was 140.0 lbs (includes shoes, shirt, pants, and pockets filled with wallet, keys, etc.). My temperature was 99.3 F, blood pressure was 105/66, heart rate was 109, and blood oxygen was 97%. Dr. Weissler thinks I may have a slight cold. When I got home I weighed myself on my recently purchased bathroom scale, and the numbers matched. I called my dentist to move out a dental cleaning two months - due to my slow recovery. I inquired how Dr. Steve Bishop is doing and was told that he's doing fabulously well. That cheered me greatly. [Read his story, below.]
April 16 (Thursday) I got through the night with minimal coughing and no cough medicine. I followed a tip that a doctor named Jeremy gave me while I was being examined by Dr Weissler yesterday - continually sip on a liquid throughout the day. When I got home I started doing just that with a carbonated flavored water beverage named Sparkling Ice. I still had some coughing fits, but the sips eventually quieted them down.
April 17 (Friday) Last night I took some Mucinex DM for coughing. It didn't do a great job, and it also kept me up. I finally fell into a deep sleep in the morning but I was then awaken by three solicitation calls. Henceforth, I will turn off my phone ringer prior to taking a nap.
April 18 (Saturday) Today's issues are virtually no saliva and repeated hacking coughing. Both are tormenting me to no end. Sparkling Ice carbonated water mitigates the coughing but I occasionally have to take some cough suppressant.
April 20 (Monday) More horrid hacking cough. I take a Mucinix DM tablet (prescribed by Dr. Weissler). At 6:21 PM I found my temperature was 100.8 F. That's not good. I ate half of a Yoplait Whips yogurt .. my first solid food since April 6th. It was a little too sweet, but I'm glad that my sense of taste is returning. It's my lack of saliva that is tormenting me ... along with the hacking cough. Tomorrow morning I meet with Dr. Chera.
April 21 (Tuesday) Meeting with two nurses (Michael Yellin and Mary Fleming) and Dr. Chera + chest x-ray + blood work. I was prescribed an antibiotic (clarithromycin 500mg tablets) for my cough. I'll take it for 10 days. I got it fulfilled, but I then threw up the first pill I tried to take. It's so big ... a "horse pill". I'll try again later. My weight was 141 lb., temperature was 98.4 F. Blood pressure while sitting was 101/58. Standing it was 89/53. Pulse rate was 100 sitting; 106 standing. My white blood cell count was 14.5. Normal range is 4.5 to 11.0. On March 25th it was 4.1, so it's shot way up from below normal to above normal. My red cell count was 3.29 - below the normal range of 4.50 to 5.90. From a visual inspection, Dr. Chera said my cancer was gone. We'll know for certain on June 2nd. That's when a PET scan will be performed. 1:30 PM: I called my pharmacy and got approval to grind up my antibiotic pills and take them via my feeding tube. I promptly do so with a pill.
2:30 PM: Pneumonia! Nurse Mary Fleming called me. She studied the chest x-rays and my blood work and found that I have pneumonia. The antibiotic (clarithromycin) she prescribed should fix me up. I'll meet with her next week to review.
April 22 (Wednesday) I'm on my second day of antibiotic. My initial reaction was thumbs up, because my coughing seemed reduced. But, then at 6:30 PM I got into an uncontrollable coughing fit. Bummer! My temperature was 99.4 F.
April 23 (Thursday) I'm in my third day of taking antibiotic, and it's starting to feel like it's working. My coughing is reduced. I then go for a 0.70 mile walk. When I got home, I was hit by another hacking coughing fit. I called Mary Fleming, and she will prescribe a codeine based cough medicine. She told me that it will take 48 to 72 hours for the antibiotic to kick in. 72 hours will be 2:30 PM on Friday April 24th.
April 24 (Friday) I slept poorly. I went for another 0.75 mile walk. Again, when I got home I had another coughing fit, but the coughing was reduced from previous days.
April 25 (Saturday) For the second night in a row I got virtually no sleep. I think this problem is my fault. I'm not used to taking pills and getting virtually no exercise, so I've been stressing out. I'm not relaxed enough to get a good sleep. I need to chill out, become more mellow, and do a better job of rolling with the punches.
April 26 (Sunday) For the third straight night I got virtually no sleep. As the day progressed, my energy got lower and lower. Finally by 6 PM I was so exhausted, that I went to bed and slept for 8 hours. Cheers!
April 27 (Monday) When you go to bed at 6 PM and get 8 hours of sleep, that leaves you awake at 2 AM. My schedule is now totally out of whack. However, thanks to the 8 hours of sleep and the antibiotic, my pneumonia feels almost cured. In this early morning I've had lots of thick mucus in my nose and oral cavity. By repeatedly blowing my nose and coughing, I'm expelling it. That's a good thing, but it shows that I still have some infection.
April 28 (Tuesday) Today has been the worst day of my recovery. I can breathe well, walk well (albeit wobbly), but my jaw trembles badly when I try to talk. I stutter. My trembling/stuttering problem was so bad that one of friends asked me if I need to be taken to the hospital. She said she would me a ride. I declined. I theorize that the root cause of the trembling/stuttering problem is the antibiotic (clarithromycin) that I'm taking for my pneumonia. I take it at 2 PM and 2 AM every day. The trembling problem began today at approximately 3:30 PM. I will immediately stop taking the antibiotic. I only have 5 pills left. This is what I hate about disease: You have a disease, and they give you treatment (in my case, radiation and chemotherapy). Then, you have side effects of the treatment (in my case, pneumonia). Then, you're prescribed pills to treat the side effects. Then, you have side effects for the pills. This seems to go on and on until you're taking a gazillion pills. I hate pharmaceuticals. I prefer exercise and no pharmaceuticals.
April 29 (Wednesday) My jaw trembling problem has gone, but I got virtually no sleep. My mind has been racing a lot thinking about the problem. I really need to be prescribed something that I can take at bedtime to calm me down and help me sleep.
I now conclude that the root cause of the trembling problem is not the antibiotic, but the way I take it. The antibiotic is a rather large pill. I tried to take the pill by mouth, but (because of all the coughing I've been doing), I gagged and threw it up. I then called my pharmacist and asked if I could crush the pill, mix it with some water and take it via my feeding tube. She yes. I think the real answer is no. Actually the bottle says "Take one tablet by mouth twice a day for 10 days".
I think the reason why I need to take the pill by mouth and not feeding tube is because it takes the body a long time to fully digest a pill. The intended beneficial effects of the antibiotic are spread out over a long time. That's a good thing. If I crush a pill and take it via feeding tube, the body takes a much shorter time to digest the antibiotic. The effects of the antibiotic are spread out over a much shorter period of time. That's a bad thing. It can cause problems like the trembling problem I experienced yesterday. This has been scratched out, because my doctors found it to be not true.
A friend of mine (Donna Jones) read my April 28 blog entry and promptly sent me an email that told me to continue taking the antibiotic. She explained, "If you stop before the end, you may create an antibiotic resistant bacteria strain and then you will have to go to the hospital. Check in with your doctor immediately. Happened to my daughter when she was 2 because she refused to take all of the medicine. The strain that developed was resistant to 2 types of antibiotic. We spent 2 days in hospital with her on IV antibiotic while the lab tried other types of antibiotics to see what was left that would work. Not fun." After reading her email, I promptly took an antibiotic pill by mouth. I got it down. Many thanks to Donna Jones.
I'm still coughing every day. The antibiotic (clarithromycin) that I'm taking has not cured my pneumonia. It hasn't been effective. I think the reason why is because I've taking the antibiotic via feeding tube instead of via mouth - same reason why I got yesterday's weird trembling problem.
April 29 (Wednesday cont.) I was at UNC Hospital from 10 AM until about 3 PM to review my progress since being diagnosed with pneumonia on April 21. Fortunately, yesterday afternoon's weird trembling/stuttering problem resurfaced, so the symptoms were visible for all the nurses to see. They gave me blood work and chest x-rays. They concluded that the culprit was the antibiotic I was on (clarithromycin). They told me to stop taking it, and they prescribed a new antibiotic, Levofloxacin [I took the first one at 5:34 AM today]. A few thought I had an anxiety attack or a combination of anxiety plus a severe lack of sleep. They prescribed Lorazepam (Ativan) 0.5mg for sleep at night.
April 30 (Thursday) I had a fantastic sleep last night. During my 10 AM - 3 PM UNC meeting they gave me something to stop my trembling problem, relax me, and allow me to sleep. When I got home I could barely stand up. I fell promptly to sleep. A neighbor of mine named Maurie drove me to and from my UNC meeting. She stayed with me at the meetings and a trip to the pharmacist - total time = 6 hours. Cheers to Maurie. She's a great neighbor.
May 1 (Friday) For the second night in a row, I had a fantastic sleep. Cheers to nurses Mary Fleming and Michael Yellin for prescribing Lorazepam (Ativan). 7:24 AM: I take my second Levofloxacin (antibiotic) pill by mouth.
May 2 (Saturday) Just like on April 8th, I coughed myself into a very painful side stitch on my right side/lower front rib cage. At 11:52 PM last night I took an oxycodone, but it didn't do any good. It's painful if I try to cough. This is so aggravating! I'm continuingly being set back in my recovery. 10:20 AM: I take another oxycodone. 4:26 PM: I take an Ibuprofen tablet.
May 3 (Sunday) My right side stitch is killing me. At 4:17 AM I take an ibuprofen tablet. At 5:51 AM I take a levofloxacin (antibiotic) tablet. I now have 3 left. The antibiotic has left me very dizzy. As a result, I cannot drive a car. Fortunately my last day of taking it is this Wednesday. 11:20 AM: I take another ibuprofen tablet. My side stitch continues. 5:52 PM: I take a third ibuprofen tablet today. My upper right front chest is now hurting.
May 4 (Monday) If enough hasn't gone wrong already, my HP Photosmart 7510 printer will no longer print black ink. I replaced the black cartridges, but that didn't help. From the internet I learned that the next step is to clean the print heads using alcohol ... which I don't have at home and will to pick up some at the local grocery store. Unfortunately I can't drive while I'm on the current antibiotic I'm taking.
May 5 (Tuesday) It feels as though the antibiotic has worked and cured my pneumonia. I'll know for sure when I meet with nurse Marking Fleming tomorrow. The antibiotic has left me very woozy and unable to drive. Today I take the last of the antibiotic pills. I hope I'm not prescribed anything further. Later today I got some alcohol and fixed my printer problem.
May 6 (Wednesday) At my meeting with nurse Mary Fleming my weight was measured at 135.7 lb. That's a drop of 5.3 pounds from my April 21st weight of 141.0. On that day I was diagnosed with pneumonia. Today's temperature was 96.6 F. My sitting blood pressure was 99/66. Standing it was 90/63. My oxygen level was 99%. Mary characterized my pneumonia as essentially cured, but it doesn't feel cured. At 6:45 PM I got into another horrid coughing fit. I met with nutritionist Jennifer Spring. She laid out a plan for me to migrate slowly from feeding tube nutrition (which is all I've been doing) to eating exclusively by mouth. The migration has to be done slowly and begin with soft foods. Jennifer also insisted that I increase my daily calorie intake. I've been intaking six Boosts/day (2160 calories). That would cause a normal person to gain weight, but Jennifer said my metabolism was so high that I lose weight on that many calories. I need more. Jennifer advised that I up my Boost intake to 7/day (2520 calories) plus add an occasional tablespoon of olive oil (100 calories/tablespoon). I also need to resume exercise - to improve my muscle tone.
May 7 (Thursday) My oral cavity feels dry as a bone. My saliva has not returned. I'm off all meds except an optional Lorazepam (Ativan) that I can take at bedtime to calm me down and permit me to fall asleep. Last night I didn't take it and slept like a baby. I mowed my lawn today. It felt as though all the muscles in my body had atrophied. I've been sedentary since January. I took my time mowing ... stopping often to rest. I consumed 7 Boosts today - a record for me. I added a tablespoon of olive oil (100 calories) to five of them. Additionally I consumed some Gatorade (130 calories/bottle). Altogether I consumed about 3100 calories today ... almost 1000 more than I have been consuming in a day.
May 8 (Friday) I consumed 7 Boosts all by feeding tube. That's 2520 calories. To some I added a tablespoon of olive oil (100 calories/tablespoon). I also walked 0.7 mile. I used a cane just as a precaution. I'm still a little wobbly.
May 9 (Saturday) I made my first trip to the gym since January 25th. On that day I weighed 164 pounds. Today I weighed 137. I just stayed 30 minutes and did two sets of 7 exercises with light weights. I then walked about 0.75 mile. I feel anemic.
May 11 (Monday) I met with Dr. David Neil Hayes. He said that priority #1 for me is to migrate away from the feeding tube and to resume feeding via mouth ... so the feeding tube can be removed. I should start by consuming thick liquids. I had been drinking Gatorade by mouth. That's too thin. My weight today was 133.9 lbs. My temperature was 98 F. Blood pressure was 98/63. Oxygen level was 98%. Dr. Hayes says that I still showed evidence of pneumonia. They took a blood sample, but results weren't available today. When I got home I made a smoothie and consumed that via mouth. It took many hours to consume it. I'm not used to consuming via my mouth. I only consumed 3 Boosts - all via my feeding tube.
May 12 (Tuesday) I went to the gym and did 8 weight lifting exercises with light weights. My weight was 137 lb. 11:35 AM Allie from UNC called. All my blood values are now in the normal range. Cheers.
May 13 (Wednesday) I have a real dilemma. I'm supposed to migrate away from my feeding tube so that it can be removed. The problem is that everything tastes wretched. Gatorade is the only thing that tastes normal, but it has virtually no calories. I've been intaking 6 Boosts/day via my feeding tube, but I can't tolerate even one of them via mouth. It tastes bad. I think the best solution is if I can add something to the Boost to enhance its taste ... like chocolate syrup, maple syrup, or ice cream. A friend gave me some chocolate syrup and maple syrup several months ago for that very purpose.
May 14 (Thursday) My blood values are not as sterling as Allie portrayed them to be two days ago. My white cell count is normal. It's 6.1 (standard range is 4.5 to 11.0). However, the red cell count is 4.15 (standard range is 4.50 to 5.90). Hemoglobin is 11.7 (standard range is 13.5 to 17.5). Hematocrit is 36.1% (standard range is 41.0% to 53.0%).
May 18 (Monday) I ordered a small plate of penne pasta with meatballs at the venue of my backgammon club. This is a dish that I normally relish and finish easily, but the absence of saliva in my mouth made this meal virtually uneatable. It was very dry, and I was only able to eat less than a dozen bites. This was very disappointing. Eventually the saliva is supposed to return, but it might be a year or more before that happens.
May 19 (Tuesday) In the evening I went to a backgammon MeetUp that was held at an ice cream store called Parlour in downtown Durham. I had a milkshake. It was wonderful although it was just milk and ice cream blended together. I expect that milkshakes will be my primary nourishment until my saliva comes back. I'll just add various other ingredients so that I don't get too bored.
May 20 (Wednesday) I go to the gym and workout with light weights - just 9 exercises. I've been doing this every other day since May 9th. At home I walk 0.70 mile.
May 21 (Thursday) A PET scan will be taken on June 2nd. It will reveal whether there is still cancer in my body. If no, I can have the feeding tube removed. If yes, I'll have to undergo more treatment, and that would be awful. When I began treatment in January they told me the cure rate for what I had was 90%.
May 25 (Monday) I hope my saliva glands come back and produce saliva. The only things that taste good are liquids and pudding/ice cream textures. Everything else is too dry and gets stuck on my teeth. It's awful.
May 28 (Thursday) I read on the internet that "It can take six months or longer for the salivary glands to start producing saliva again after the radiation therapy ends." My radiation ended on March 11th, so six months later is September 11th. The official term for dry mouth is "xerostomia".
June 2 (Tuesday) PET scan revealed that the tumor in my left tonsil is gone. Cheers! PET scan was indecisive about the two lymph nodes in my left neck that were swollen back in December. They're smaller (shrunk from 1.6 cm to 1.0 cm), but not as small as they should be. [Actually this is false. According to a Google search "Most normal lymph nodes are 1 cm in size (0.5 to 2.0 cm)".] The PET scan report went on to say that the lymph node "remains hypermetabolic". My doctors recommend that I have them surgically removed as a precaution. I will meet with surgeon Dr. Weissler tomorrow to discuss. Until the lymph nodes are removed (or not), I should continue to have my feeding tube installed. My lower right lung is still messed up from my bout with pneumonia a couple of months ago. It'll heal on its own. My weight was 137.5, my blood pressure was 118/62, my pulse was 75, my temperature was 97.6 F, and my oxygen level was 99%.
June 3 (Wednesday) I met with Dr. Mark Weissler to discuss my PET scan results. I'll need surgery to remove two lymph nodes from my left neck. It's not certain that they are cancerous, but it's best that they be removed. This procedure will necessitate that I stay in the hospital for 3 or 4 days. Yikes! Surgery will occur sometime during the week of June 22nd or June 29th. TBD My feeding tube will remain in place until I've recovered from the surgery.
June 4 (Thursday) I'm having a lot of doubts and fears about the proposed surgery to remove two lymph nodes from my left neck. It's extensive surgery that will require 3-4 days in the hospital. I haven't recovered from the pneumonia that I was diagnosed with on April 21. I coughed up some dark mucus this morning. I haven't recovered from the six weeks of radiation that ended on March 11th. I was told on June 2nd that the lymph nodes didn't shrink as much as they hoped they would, but I learned yesterday that that's false. They shrunk to 1.0 cm ... which is normal. The PET scan report said that the "left level IIA node remains hypermetabolic". That would indicate cancer, but I need to do more research. It should be noted that Tuesday's PET scan was done less than 3 months after the conclusion of my radiation treatment. Via a Google search, I found a 2007 doctor's post that recommended waiting 4-6 months after radiation treatment to do a PET scan to avoid picking up false positives (caused by the treatment). I read that on this web page. 6 months after the end of my radiation treatment would be September 11, 2015. I'm inclined to insist that another PET scan be done no earlier than that date ... before any surgery is contemplated.
June 5 (Friday) I decided to reject my doctor's advice and not have the proposed neck dissection surgery ... until at least after a second PET scan is taken - 12 weeks out (end of August). I also had my feeding tube removed today. That was a quick 3 minute procedure that didn't hurt a bit. They didn't even need to give me any pain medicine. The nurse just deflated a balloon that was in my stomach, pulled it out, and applied a bandage.
June 6 (Saturday) Gym. First benefit of no feeding tube: Only 2 trips to the bathroom last night! When I had the feeding tube in me, I had to make 9 to 15 trips/night.
June 8 (Monday) Gym. A second PET scan has been scheduled for September 22nd. That's more than 6 months after the end of my radiation treatment. Cheers. At my backgammon club, I shared the neck surgery story with John Seno. He said under no circumstances would he ever have a lymph node removed. Lymph nodes are the garbage collectors of the body and are a vital component of keeping it healthy. John has an MS in traditional oriental medicine.
June 9 (Tuesday) I resumed running today ... my first run since January 25th when I ran 4.5 miles. I only ran a quarter mile, and I did it very slowly. I'm going to work my way very slowly up.
June 10 (Wednesday) Gym
June 11 (Thursday) Ran 0.30 mile. I tried eating a slice of pizza yesterday and some oatmeal this morning. Both were very dry due to my lack of saliva. Eating them wasn't pleasant. Sigh.
June 12 (Friday) Gym
June 13 (Saturday) Ran 0.35 mile.
June 14 (Sunday) Gym
June 15 (Monday) Ran 0.40 mile.
June 16 (Tuesday) Gym. In reflecting on my neck lymph nodes and the fact that one or more may have to be surgically removed: I don't understand why the radiation and chemotherapy didn't cure the cancer in them. They killed the cancer in my tonsil (which was bigger than the lymph node), so they should have killed the cancer in my neck lymph nodes. Something is flawed ... either the radiation/chemotherapy protocols ... or the PET scan that was taken on June 2nd.
June 17 (Wednesday) I biked 12 miles on the American Tobacco Trail (crossing the I-40 pedestrian bridge twice) with my son Kevin in 90+ degree heat. That really dried out my mouth, and consumption of water periodically didn't help. I blame it all on what the radiation did to my saliva glands. Afterwards, we consumed smoothies at Smoothie King. Those were fabulous. I had the "Hulk" which had 960 calories even though it was only 20 ounces. In the evening I tried to eat a small burrito and Spanish rice at a Mexican restaurant. That didn't go well. I had to cough repeatedly and blow my nose a lot. It was unpleasant. I was only able to finish about 20% of it. I blame that, also, on what the radiation has done to my saliva glands. If I eat anything solid, I have to eat it via very tiny bites ... otherwise I have coughing fits. However, if I use tiny bites, it takes forever to eat. I have to continue with smoothies.
June 18 (Thursday) Gym I consumed a 40 ounce Hulk smoothie at Smoothie King. It purportedly has 1928 calories.
June 19 (Friday) My weight nude first thing in the morning (7:00 AM) is 130.0 pounds on my digital scale. Henceforth, I'll refer to this as just "weight=xxx.x". Ran 0.50 mile.
June 20 (Saturday) Weight=130.6. Gym In the late afternoon I got a small pizza from Domino's. I was able to eat one slice and saved the rest in the refrigerator for other days. It didn't taste as well as during my pre-radiation days, but it was good nonetheless. This gives me some hope that I can eventually return to normal food - not liquids only.
June 21 (Sunday) Weight=130.8. Ran 0.55 mile. Later in the day, I consume a 40 ounce Hulk smoothie from Smoothie King plus a couple of slices of pizza and some ice cream.
June 22 (Monday) Weight=133.0 Gym
June 23 (Tuesday) Weight=134.2. I played my first round of golf in 2015. I rode a cart to conserve my energy, but it was in the high 90s. Later I had a 40 ounce Hulk smoothie at Smoothie King. It purportedly has 1928 calories.
June 24 (Wednesday) Weight=131.8. Gym
June 25 (Thursday) Weight=131.8. I consume a 40 ounce 1928 calorie Hulk smoothie mid-day. I'm making more slow progress on my running. Today I ran 0.65 mile. I started with 0.25 mile on June 9th and have added 0.05 mile every other day. When I reach 1.0 mile, I'll increase the increments to 0.10 mile. On the days that I don't run, I exercise with light weights and high reps at my gym. Exercise makes me feel good.
June 26 (Friday) Weight= 131.8 for the third day in a row. I've returned to eating cereal for breakfast. Gym
June 27 (Saturday) Weight=132.8. Gym Later in the afternoon I ate two slices of a Domino's large pizza.
June 28 (Sunday) Weight=132.8 Ran 0.70 mile.
June 29 (Monday) Weight=131.4 Gym Monday night is backgammon night, a sedentary activity.
June 30 (Tuesday) Weight=134.4 I ride and play 18 holes of golf and then have a 40 ounce Hulk smoothie at Smoothie King.
July 1 (Wednesday) Weight=132.8 Worked out at my gym in the morning; ran the mile in a track meet in the evening. My mile times was poor - 12:30, but I'm just getting back into running. My longest distance since resuming has been just 0.70 mile.
July 2 (Thursday) Weight=131.6 Golf
July 3 (Friday) Weight=131.6 I ran 2.0 miles in the afternoon Galloway style - ran 0.5 mile, walked a bit, ran 0.5 mile, walked, etc. My friend Tom Arnel is a proponent of the Jeff Galloway run-walk style. I prefer just running, but in my early stages of resuming running, the Galloway approach is better.
July 4 (Saturday) Weight=131.6 Gym
July 5 (Sunday) Weight=133.4 I jog 2 miles and mow my lawn.
July 6 (Monday) Weight=131.0
July 7 (Tuesday) Weight=134.2 Played 18 holes of golf.
July 8 (Wednesday) Weight=133.2 Gym I ran 1500 meters in a track meet. Time was a poor 11:24, but I finished.
July 9 (Thursday) Weight=132.4 I ran 2 miles and then had a 40 ounce Hulk smoothie. At the advice of a neighbor, I bought and have started consuming a daily multi-vitamin. I bought Vitafusion's MultiVites.
July 10 (Friday) Weight=131.8 Gym
July 11 (Saturday) Weight=132.4. I'm still having trouble eating dry foods. I have to eat them extremely slowly to avoid a gag reflex/coughing mode. It's so annoying. This is all caused by what the radiation did to my saliva glands. The radiation has left me with very little saliva. Within a year it should improve. Today I ran 2.10 miles and then had a 40 ounce 1928 calorie smoothie from Smoothie King.
July 12 (Sunday) Weight=133.2 Gym
July 13 (Monday) Weight=133.8 I ran 2.12 miles on this day and walked 1.23 miles. I also mowed my lawn and had a 30 ounce Hulk smoothie.
July 14 (Tuesday) Weight=132.6 A nurse practitioner from Matrix Medical visited my house and gave me a health assessment. Everything was as expected until she took my blood pressure ...which she measured as 91/60 sitting and 85/54 standing. She said those low numbers meant that I was "orthostatic hypertensive" and that I needed to see a doctor and get blood work done. After she left, I did some shopping at Rite Aid and Whole Foods. Both had blood pressure machines, and I measured my blood pressure twice on each machine. None of the values matched what the nurse practitioner found. They were all higher and closer to normal. The last three were: 111/77, 105/72, and 114/72. In the evening I had a neighbor measure my blood pressure on his machine, and the reading was 124/69. I'm becoming very cynical of health care workers. Note: The nurse's device was wrist based. My follow-up readings were all upper arm. From Amazon I order an upper arm blood pressure monitor (Omron 5 Series Upper Arm Blood Pressure Monitor with Wide-Range Cuff - BP742N).
July 15 (Wednesday) Weight=134.8 Gym My sister (who read my blog) emails me that wrist BP units are inaccurate. Upper arm BP units are best. I email Matrix Medical to complain about the nurse practitioner's finding. In the evening I run the mile in 11:32 in a track meet.
July 16 (Thursday) Weight=132.6 I play 18 holes of golf. I rode a cart.
July 17 (Friday) Weight=131.2 Gym
July 18 (Saturday) Weight=132.6 Ran eight quarter mile sprints.
July 19 (Sunday) Weight=133.0 Gym
July 20 (Monday) Weight=133.0 Ran eight quarter mile sprints.
July 21 (Tuesday) Weight=134.2
July 22 (Wednesday) Weight=132.8 Gym Track meet. Ran the 1500 meters in 10:25.
July 23 (Thursday) Weight=131.8 Ran eight quarter mile sprints.
July 24 (Friday) Weight=131.8 Gym
July 25 (Saturday) Weight=131.8 Ran eight quarter mile sprints.
July 26 (Sunday) Weight=131.8 Gym
July 27 (Monday) Weight=132.8 Ran eight quarter mile sprints.
July 28 (Tuesday) Weight=133.6 Gym
July 29 (Wednesday) Weight=133.6, BP=90/59, pulse=67. At 6:40 AM I took my blood pressure using the Omron device that I bought from Amazon. In the evening I ran two events in a track meet. I ran the 1600 meters in 10:31, and I ran a leg of a 4x400 meter relay in 1:54.
July 30 (Thursday) Weight=132.6, BP=98/58, pulse=70 I ran 2 miles later in the day at a pace of 14 minutes/mile. I then had a 40 ounce 1928 calorie Hulk smoothie at Smoothie King.
July 31 (Friday) Weight=133.2, BP=93/60, pulse=66 Gym
August 1 (Saturday) Weight=133.8, BP=97/62, pulse=66 I ran 2 miles trying my version of the Jeff Galloway run-walk method that a friend advocated. That was a disaster, because I tripped and fell while looking at my watch to see when my running interval was over. I bloodied both my elbows and the right side of my right knee. It also bruised my right quadriceps leaving it very sore. I'm lucky I didn't break any bones.
August 2 (Sunday) Weight=133.8, BP=93/61, pulse=70 Gym
August 3 (Monday) Weight=133.0, BP=93/63, pulse=79 Gym I had a 40 ounce Gladiator smoothie. It has 86 grams of protein.
August 4 (Tuesday) Weight=135.0, BP=91/58, pulse=74 I ran 5 x 0.26 uphill intervals with a slope of 3.28%. I had a 40 oz Gladiator smoothie.
August 5 (Wednesday) Weight=133.6, BP=92/62, pulse=75 Waist=30.5" Gym I had a 40 oz Gladiator smoothie. In the last night of the Godiva Summer Track Series I ran the 1500 meters in 10:06 and the 400 meters in 2:06.
August 6 (Thursday) Weight=132.0, BP=100/67, pulse=77. I have a 40 oz Hulk smoothie. No exercise today.
August 7 (Friday) Weight=134.0, BP=92/54, pulse=73 Gym
August 8 (Saturday) Weight=134.0, BP=86/54, pulse=72 Ran 2.35 miles at a slow pace (14 minutes/mile) - the most I've run since January. Had a 40 oz Gladiator smoothie.
August 9 (Sunday) Weight=133.4, BP=101/63, pulse=79 Gym
August 10 (Monday) Weight=134.4 BP=83/55, pulse=70 Ran 2.64 miles at a slow pace (15:26/mile).
August 11 (Tuesday) Weight=135.2 BP=98/63, pulse=78 Gym
August 12 (Wednesday) Weight=135.2 BP=99/64, pulse=82 Played 18 holes of golf riding a cart.
August 13 (Thursday) Weight=133.2 Ran 3 miles at a slow pace (15+ minutes/mile).
August 14 (Friday) Weight=131.8 BP=84/58, pulse=72 My BP is lower when I take it in the AM than in the PM. Gym
August 15 (Saturday) Weight=133.4 BP=99/61, pulse=70
August 16 (Sunday) Weight=132.6 Gym
August 17 (Monday) Weight=132.0 Ran 3 miles, walked 1.5 miles
August 18 (Tuesday) Weight=133.8 BP=97/65; pulse=77 Gym
August 19 (Wednesday) Weight=133.8 Played 18 holes of golf riding a cart. BP=94/58; pulse=78
August 20 (Thursday) Weight=133.2 Ran 3 miles.
August 21 (Friday) Weight=132.2 Gym
August 22 (Saturday) Weight=132.2 Ran 3 miles.
August 23 (Sunday) Weight=133.4 Gym
August 24 (Monday) Weight=134 Ran 3 miles.
August 25 (Tuesday) Weight=134.6 Played 18 holes of golf.
August 26 (Wednesday) Weight=134 Gym
August 27 (Thursday) Weight=134
August 28 (Friday) Weight=134 Gym
August 29 (Saturday) Weight=134 Ran 3 miles.
August 30 (Sunday) Weight=134 Ran intervals ladder-style (400m, 300m, 200m, 100m, 400m, 300m, 200m, 100m, 100m) at UNC track - 2100 meters total.
August 31 (Monday) Weight=134 Gym
September 1 (Tuesday) Weight=135.8 Golf
September 2 (Wednesday) Weight=135 Gym
September 3 (Thursday) Weight=135 Ran 3 miles.
September 4 (Friday) Weight=134.2 Gym
September 5 (Saturday) Weight=135.2 Ran 3 miles.
September 6 (Sunday) Weight=134.2 Ran intervals at UNC track - 2200 meters total.
September 7 (Monday) Weight=133.6 Gym
September 8 (Tuesday) Weight=135 Golf
September 9 (Wednesday) Weight=134.2 Gym
September 10 (Thursday) Weight=134.8 Ran 3 miles
September 11 (Friday) Weight=134.8 Gym
September 12 (Saturday) Weight=133.8 Ran 3 miles
September 13 (Sunday) Weight=133.8 Ran intervals at UNC track - 2200 meters total.
September 14 (Monday) Weight=133.8 Gym
September 15 (Tuesday) Weight=135 Golf
September 16 (Wednesday) Weight=134.2 BP=102/71 with pulse of 67 Gym
September 17 (Thursday) Weight=134.8 Ran 3 miles
September 18 (Friday) Weight=132.2 Gym
September 19 (Saturday) Weight=133.2 Ran 3 miles. My running pace has been very slow - almost 15 minutes/mile. Eating solid food is a nuisance. I have to eat very slowly using tiny bites to avoid coughing too much. It took me 90 minutes to eat a Lean Cuisine entry today.
September 20 (Sunday) Weight=133.2 Ran intervals at UNC track - 2200 meters total.
September 21 (Monday) Weight=134.2 Waist=30", chest=35"
September 22 (Tuesday) Weight=134.6 MY THROAT CANCER APPEARS TO HAVE BEEN CURED!!! I have a PET scan at UNC. Preliminary conclusion by Dr. Chera (radiation oncologist) is that I don't need surgery on my neck. My lungs, nostrils, and mouth were all clear. Cheers! I'll have another PET scan in six months - March 22nd.
September 23 (Wednesday) Gym
September 24 (Thursday) Weight=134.6 Played golf. Shot my best round of the year, 89, which is high by historical standards, but this has been a tough year. I'm still 25 pounds below my normal weight.
September 25 (Friday) Weight=134.6 Results of Tuesday blood draw shows everything was fine or almost so. A few numbers were just below the standard range. RBC (Red Blood Cell Count) was 4.42 (standard range is 4.50 to 5.90). Hemoglobin was 13.2 (standard range is 13.5 to 17.5). Platelet Count was 132 (standard range is 150 to 440). Lymphocytes absolute was 0.4 (standard range is 1.5 to 5.0). MORE INDICATION THAT MY THROAT CANCER HAS BEEN CURED: At 9:47 AM Dr. Chera calls me to give me the final report of the September 22nd PET scan. The final report is better than the prelimary report Dr. Chera gave me on Tuesday - affected tissue has been clearing up/shrinking. Cheers to Dr. Bhisham Chera, Dr. Mark Weissler, and the rest of my UNC oncology team. They saved my life!
More good news: Just minutes before Dr. Chera's phone call, I received an email from WCHL's Ron Stutts. Ron invited me to come over to WCHL to record a Commentator's piece that I submitted on a local political issue. I do so at 11 AM, and my piece will air periodically on Monday September 28th.
After my WCHL recording I visit my gym for a workout, and I follow that with a large Activator smoothie at Smoothie King. In the evening I win an online backgammon tournament. It's been a fabulous day.
September 26 (Saturday) Weight=134.6 To celebrate the triumph and joy of apparently being cured of neck cancer, I ran my entire 4.5 mile pre-treatment jogging route this morning. If any of my UNC oncology doctors read the last three months of this blog and learned about how much exercise I've been doing, they would likely amend their final report to say, "We cured his cancer. Now we're turning him over to UNC Mental Health to treat his lack of sanity."
October 19 (Monday) At the venue of my backgammon club I ordered a small plate of penne pasta with meatballs. It tasted great, and I was able to eat it just fine. This is in sharp contrast to the experience I had on May 18th when I could eat only a few bites of the same food. My taste is back!
November 8 (Sunday) I ate a meatball sub and potato chips at Subway ... my first since January. It tasted great, and I only coughed a little. I think my travails with eating solid foods are over. Cheers.
November 28 (Saturday) I'm still beset with a coughing problem. I ate an Asian chicken salad with a milkshake today ... one of my favor meals. It tasted great, but I couldn't stop coughing despite eating it slowly. That was so annoying. It was also very embarrassing, because I was with someone. I hope the passage of time will eventually cure this problem.
January 11 (Monday) Weight=135.0
January 12-14, 2016: I return to UNC Hospital because of a gallbladder problem. It was removed. Details can read on this blog.
January 18 (Monday) Weight=130.0 Last week's gallbladder removal messed up my eating and prevented me from doing any gym exercises. Dental cleaning: My dentist said my saliva level has risen, but it's not up to that of my pre-treatment days. The low saliva level has caused gum recession on my lower front teeth. This was noticeable last July at my last dental visit. I also coughed about 30 times during my dental cleaning. [Note: I raised my hand prior to each cough.]
February 23 (Tuesday) Coughing and hoarseness. Eating ice cream makes things worse. Last night I did a lot of talking at my backgammon club. That can aggravate my hoarseness.
March 22, 2016 (Tuesday) PET scan shows that I'm cancer free. I also don't need any future PET scans. However, I have congestion in my lungs. An antibiotic is prescribed ... plus I'll need to have an appointment Speech-Language pathologist Shannon Aumer to review my cough problem and go over some mouth/tongue exercises that I should do. My blood pressure was 98/55; oxygen level was 98%, pulse rate was 63, and temperature was 98F.
March 31, 2016 (Thursday) I have another barium swallow test with Shannon Aumer. I had one on January 22, 2015 but never did the exercises she prescribed. Today's test showed that my swallowing function is actually slightly better than last year. She reviewed exercises that I should do but thought they might not help me, because the exercises are ones one should do during the radiation phase. She thought I should consider limiting the amount of dairy I consume, because dairy may aggravate my coughing. I had told her that I cough more when I consume ice cream. She also told me to focus on tiny bites, flush with liquid, and don't talk while I'm eating. Radiation stiffened and thickened some of the rear tongue muscles which control where food goes (larynx or esophagus). That's the cause of my coughing.
June 29, 2016 (Wednesday) I have a checkup with Dr. Mark Weissler. He finds that everything is clear and normal. My neck feels fine to him. I told him that I'm still coughing, but not as much as last summer. He said that was a normal consequence of the treatment I endured.
July 15, 2016 (Friday) Weight= 131.2 I've been running in a weekly track meet. Wednesday was week 9 of 12. Thus far, I've competed in 4 events each week.
July 16, 2016 (Saturday) I still cough when eating solid foods, and it takes me a long time to eat a meal as I have to chew far more than normal. Eating out is not fun. I go to Smoothie King almost every day and have a large smoothie. It's the only food I really enjoy, because I don't cough when consuming it.
July 25, 2016 (Monday) Dental cleaning: I brought a counter, and found that I coughed 10 times. That's a lot better than my January visit when I coughed about 30 times.
August 25, 2016 (Thursday) Dental visit: I spent $ 2918 having two [temporary] crowns installed and one cavity fixed on teeth 13, 14, 15 (upper left side). On September 15th I'll have periodontal surgery ($ 3214) to fix some receding gum issues below my lower front teeth. Both are side effects of the 2015 radiation of my oral cavity. The periodontal surgery is not covered by my dental insurance. I expect that little of my dental work will be covered, as well. My dentist says that I should use biotin five times each day. It will help balance the chemicals in my mouth necessary to fight cavities and gum recession. The radiation damaged my output of saliva. In retrospect, I should have been using biotin regularly, but I haven't. One piece of very good news about today's dental work: I didn't cough at any time!
September 15, 2016 (Thursday): I endure a two hour procedure at Tarheel Periodontics. Dr. Justin Valentine grafted tissue from the right roof of my palate to the area under my lower front teeth. None of the $ 3214 cost is covered by insurance. I'll return on October 7th to see how well the grafts took. I had pain in the first few hours after the graft, but that pain subside by the evening. I only took a few Tylenol tablets.
September 16, 2016 (Friday): I'm recovering fine from yesterday's gum skin grafts. No bleeding + no need for any pain meds today, but the area under the front of my lower teeth and upper right palate are sore.
September 20, 2016 (Tuesday) The area below my lower front teeth is still sore and swollen. I'm getting concerned.
September 22, 2016 (Thursday) Cancer checkup with Dr. Chera. Everything was normal. My blood pressure was 101/67, my pulse was 64, my temperature was 97.9 F, and my weight (with clothing) was 137 lb 9 oz. They did a lung x-ray and blood work. I'm doing fiine and appear to be cancer free. I told Dr. Chera about last week's periodontal work and my continued coughing. He said those were not normal. My coughing may be related to my never doing the jaw and tongue exercises that were prescribed on January 22, 2015 by Shannon Aumer. After today's 3-month exam, I stopped by UNC Family Medicine and got a flu shot and a pneumonia shot.
December 5, 2016 (Monday) I give a short speech at an Orange County Commissioners meeting. Here it here. Not that my voice is not hoarse. [Note my February 9, 2017 comment about hoarseness.]
December 28, 2016 (Wednesday) Cancer checkup with Dr. Mark Weissler. Everything was normal/all clear. My blood pressure was 111/60. I still cough when eating frozen yogurt and salads. Nothing can be done about that.
January 16, 2017 (Monday) Prior to my backgammon club meeting I ate a small pasta and meatballs with a soda. I didn't cough at all, but it took me about 75 minutes to eat it. I ate alone.
January 19, 2017 (Wednesday) I went with a friend for lunch and ate a chicken salad without dressing plus a milkshake. I coughed 64 times and only ate half the salad. I used a counter to count my coughs.
February 8, 2017 (Wednesday) Dental cleaning: I coughed 24 times. When a drop of water spray hits a certain back area of lower oral cavity. It triggers a strong cough reflex. When I felt the urge to cough I raised my hand to warn my dental hygienist.
February 9, 2017 (Thursday) I record a 90 second Commentators segment at radio station WCHL. It airs on Monday February 9th, and I sound hoarse. [Hear it here.] I didn't sound hoarse when I recorded one in October 2015. Hear that one here. Both were after my radaition treatment [which ended in March of 2015].
February 10, 2017 (Friday) I still cough a lot when certain foods ... like frozen yogurt.
February 17, 2017 I coughed 20 times during a 70 minute Skype call.
February 22, 2017 I coughed 31 times during a lunch date ... eating a milkshake and half of an 8 inch pizza.
February 27, 2017 (Monday) I've begun gargling with salt water to treat my hoarseness. I got this tip from a Google search on "hoarseness".
March 7, 2017 (Tuesday) I'm not hoarse anymore. I was able to deliver a 3 minute speech at a public hearing without difficulty. I only gargled with salt water a few times having trying it on February 27th.
March 21, 2017 (Tuesday) I coughed 29 times during a lunch date ... eating a milkshake and 2/3 an 8 inch pizza.
March 23, 2017 (Thursday) I have my once-every-3-months cancer checkup. I had a chest x-ray plus blood analysis plus an inspection of my nasal and oral cavities by Dr. Chera. Everything was clear and normal. My blood pressure was 102/62. In response to my complaint about my frequent coughing, a male nurse gave me the most plausible explanation: my oral cavity is still very dry from my 2015 radiaton. That dryness impedes the normal flow of food ... triggering my coughing. He recommends that I gargle with Biotin prior to eating ... to reduce the dryness. Lastly, the frequency for my future examinations has been reduced from once-every-3 months to once-every-6 months. My next appointment will be September 20th with Dr. Weissler.
April 4, 2017 (Tuesday) The gum tissue below my lower front teeth is very sore and has been for the last couple of weeks. Before bed last night I gargled with salt water. Two days ago I gargled with Chlorhexidine. I'll try biotene. I haven't gargled with it in several weeks.
June 21, 2017 (Wednesday) I have a 55 minute phone conversation with a guy named Rob whose is a friend of a friend of mine named Christy. Christy told me that Rob had an oral cancer and endured treatment similar to mine ... by the same doctors at UNC. Rob wanted to talk to me to compare notes about side effects of the treatment. In my phone conversation with Rob, I learn that he had a tumor removed surgically and then had 60 x-ray treatments ... twice/day x 5 days/week x 6 weeks. That's twice as many radiation treatments as I had! There's no way way that I could have survived that! My 30 treatments burned my mouth so bad that I'm still suffering (coughing and eating issues). Prior to his radiation, Rob had most of his teeth removed ... as they were going to die anyway from the radiation. He will have dentures. I was given that option but refused. Rob went on to tell me that has been suffering a little bit of memory issues. I never had that issue. Rob did say that a PET revealed that his oral cancer appears to be cured. The main question in my mind is "Why did Rob have to endure so many radiation treatments?" Prior to my treatment, I was given the option to endure 6 weeks of radiation instead of the usual 7 weeks ... because "they learned that they were over-treating people". Now with Rob, they doubled the treatment. However, I had chemo + radiation. Rob had surgery + radiation. Mine was stage 4; Rob's was stage 2.
June 23, 2017 (Friday) When I eat ice cream I still cough. When I eat something like a sandwich, it takes me forever. I eat little tiny bites at a time. I attribute both side effects to a diminished amount of saliva ... caused by the radiation. I still go to Smoothie King almost every day and have a large smoothie.
June 24, 2017 (Saturday) Lately I've been doing a lot of sprinting to improve my times in a summer track club series. Twice/week I'll run 3 miles with a mile in the middle that consists as many as 27 sprints where I run telephone pole to telephone pole and then rest before continuing. This is something that never gets studied in a clinical trial. It should be. People in a study have different exercise and dietary habits. People like me would likely the skew the data, because my exercise and dietary habits are far different than your average person.
August 14, 2017 (Monday) I had dinner at a Mexican restaurant with a former IBM colleague (Erich Guenter) who was visiting from Germany. I didn't cough at all! I'm greatly cheered, because I've been avoiding restaurants due to all my coughing problems. I now attribute my coughing problems to the consumption of cold dairy products like ice cream and milkshakes.
August 16, 2017 (Wednesday) Bad news at my dental exam. I'll need repair to 10 teeth because of cavities ... including 7 crowns. Total cost: $ 9,562. Diminished supply of saliva caused by oral radiation is the culprit. To avoid such damage it's best that radiation treated patients rinse their teeth with Biotene ... as many as a dozen times/day. I haven't been rinsing with it at all. Biotene allegedly offsets the acid pH of sugar. I've been consuming a smoothie almost every day. Those are very sugary. Also, about once/week I've eating either Lindt Milk chocolate or Dots. Effective immediately I will cease doing so. Lastly, I coughed 23 times during my dental exam. Lastly, I was advised to have dental cleaning every 3 months instead of every 6 months. Plaque buildup has noticeably increased since my 2015 radiation/chemotherapy.
August 29, 2017 (Tuesday) Dave Clayton called me. He's an old friend and former IBM colleague. He was struck by throat cancer last year and was successfully treated by Duke Hospital. Dave called to see how I'm doing. He told me that takes Xylimelts to deal with oral dryness. He also spent a lot of time in a hyperbaric chamber to minimize the liklihood of infection. This is the first I heard of those treatments. He also takes "dry mouth toothpaste". Prior to his cancer being discovered, Dave didn't know of anyone who had oral cancer. Since then, he learned that his barber, a golf buddy, and a former co-worker all have it. Same story as me. I've learned of several people who have had it. It seems like an epidemic.
September 5, 2017 (Wednesday) Cavity repair on 3 teeth (#2, #3, and #4) ... two of which had crowns which neededed to be replaced. Cost= $ 3258. Amazingly, I didn't cough but twice, and those coughs were late in the session. Biotene may be helping reduce my coughing. I don't know what else it could be. My dentist told me that hyperbaric treatment is beneficial only a patient has jaw bone damage. She dismissed Xylimelts as not improving saliva production to a noticeable degree. Her dad tried them.
September 20, 2017 (Wednesday) Six month checkup at UNC Hospital. Everything was found to be healthy and normal. I complained about dry mouth, coughing, and dental cavities, but Dr. Tanner found that my saliva production was good from both sides of my mouth. Dr. Weissler thinks that the quality of my saliva may not be as good as pre-treatment ... and that's the reason for my dental cavities. Dr. Weissler believes that my coughing issue may be attributable to muscles at the back of my tongue that may have been weakened by radiation. Dental Clinic's Dr. Jennifer Webster-Cyriaque's advice was: To reduce the liklihood of dental cavities, I should use Prevident toothpaste (needs a prescription), Oasis mouth wash/spray instead of Biotene. It might reduce coughing if I use it prior to eating. I should use a toothbrush with extra soft bristles. I should mix in chlorhexidine with my WaterPik water, and I should get my dentist to coat silver diamine fluoride to my teeth. I should also consider using Xylimelts for dry mouth. Tooth #18 needs extraction [per my regular dentist, Dr. Bishop]. I should consider having the UNC dental clinic do the extraction, because of the need to spend time in a hyperbaric chamber to promote bone healing. Tooth 18 was hit by more radiation than any of my other teeth.
September 26, 2017 (Tuesday) Dental crowns for teeth 3 and 4 cemented in place by my regular dentist, Dr. Bishop. She said that there's little difference between Oasis and Biotene. I have almost 3 liters of Biotene, so I'll use it up first. That'll take a while. Plaque buildup on my teeth is significantly more than pre-2015 cancer treatment. This may be because of the damage done to my saliva glands by the radiation treatment and/or because of all the Smoothie King smoothies (a large one almost every day) I've consumed since treatment ended. The smoothies have a lot of sugar. To decrease the likelihood of cavities, I will henceforth have dental hygienist cleanings every 3 months instead of every 6 months.
November 1, 2017 (Wednesday) My dental hygienist recommended this dental cleaning routine.
November 23-25, 2017: Interesting discovery: I discovered that I cough less after eating sherbet than eating frozen yogurt. In a controled experiment I coughed 14 times over 10 minutes and 59 seconds a span (once every 47 seconds). Later I coughed 9 times over a span of 20 minutes and 16 seconds after eating an equivalent amount of sherbet (once every 135 seconds). Therefore, my coughing frequency is three times as much after eating frozen yogurt than eating sherbet. Coughing has been a side effect from my 2015 radiation treatment. The only differences that I can tell is that my Harris-Teeter raspberry sherbet is 1% fat. The Kemps Sea Salt Caramel Truffle Frozen Yogurt that I cough on is 5% fat. It also has some chunks of caramel and chocolate.
December 5, 2017 (Tuesday) I coughed 20 times during a lunch date. I ate half of an 8" pizza and some lemonade. I used to order a milkshake at this same restaurant (The Loop in Eastgate shopping Center), but today I switched to lemonade to see if it would reduce my coughing. It did to a degree. Read my March 21, 2017 entry in this blog.
The Story of my dentist's father
On January 6, 2015 I learned that in early 2014 my dentist's father (Dr. Steve Bishop, also a dentist) endured the same plight that I'm now enduring! In fact, he even had all the same doctors as me. I talked to him that night, and here are the highlights of his story:
His first symptom was a change in his voice.
He had 6 weeks of radiation with 6 chemo treatments during 6 of the radiation days.
He drove himself to most of the early treatments.
A radiation treatment lasts 30 minutes with prep.
On chemo days it's 4 hours (blood test + 45 minutes of IV saline + 45 minutes of chemo + 45 minutes of IV saline).
He said that as soon as you have chemo, everything tastes like crap ... like metal.
He consumed 4 or 5 containers/day of a product called "Boost". "It tastes horrible."
He eventually needed painkillers (Oxycodin) to swallow the Boost.
By the end of the second chemo treatment "the cancer will be virtually gone".
A year later he still struggles to eat some things.
He said he had virtually no saliva for the first six months after treatment.
He couldn't eat chicken breast unless it had a lot of sauce.
He didn't need a feeding tube, but came close.
His weight dropped from 185 to 157. His height is 5' 10". [My pre-treatment numbers are 159 and 5' 11"]
On the Tuesday of the last week he said it felt like someone had scraped his throat with a wire brush.
About 90% of the population will have HPV in their system at one time or another. The unlucky ones don't fight it off and cancer results.
(April 23, 2015) I learn that Steve is doing fabulously well - over a year since his treatment. His remaining issues are: "I'm still struggling eating drier meats and find my diet leaning more toward vegetables or more fluid like main courses. Chicken breast, dry fish, or non-fatty meats are more trouble than their worth."
Some comments about the need for early detection
My dentist always gives me a screening for oral cancer; however, she missed catching my tonsil cancer. From what my ENT doctor told me, that's not surprising. My tumor was not visible. This picture shows the whole area to be a nice healthy pink. Nonetheless, I think better tools need to created to help dentists catch oral cancer. Here's an article which mentions several possibilities. Here's a dental imaging tool that is available now: http://www.velscope.com/ Unfortunately, I just learned [Feb 4, 2015] from my dentist that it doesn't work in a clinical testing. They gave it a try last year after her dad was diagnosed, but it performed dismally. Her father's cancer showed up as normal tissue to the Velscope. Bummer! December 11, 2015: I played golf with a local dentist named Corey Wilson. He said he uses the Velscope during his dental exams. It's FDA approved. He said it occasionally will yield false positives diagnoses.
Some comments about the UNC Healthcare System
The Chapel Hill UNC Healthcare system is totally awesome. I'm thoroughly impressed with what a well oiled and efficient machine it is. Beginning with my first appointment at UNC Family Medicine (December 11th), I've had to interact with several dozen people. Each has performed their job with a high degree of courtesy and discipline. I'm really fascinated by how well it works. I'm in great hands. Thank you, UNC Healthcare!
If any UNC doctors have patients who have the same cancer as I had, make them aware of this blog. I'm also willing to meet with the patients in person. Some people prefer a face-to-face meeting over reading a lengthy blog.
To donate to the UNC oncology department see https://unclineberger.org/waystohelp