Treatment - Day 4

The past two days have been difficult. My guts were all backed up - most likely due to chemotherapy on Monday - and I didn't feel well enough to eat. Consequently, I lost a few pounds. Yesterday I took two Senocote laxative pills that were supposed to produce a bowel movement in 6 to 12 hours. No luck after 20+ hours. Feeling somewhat hungry after the radiation treatment today I stopped for takeout Hot & Sour soup (large) from a local Chinese restaurant. That seemed to have done the trick. Whew! Who knew I could get tasty nutrition and a BM in one package.

Thinking that the worst was over I later tried out the nutrition formula Iso-Source 1.5 through the feeding tube. I first pushed about 20 ml of water through the tube and then 60 ml of formula followed by another 20 ml of water. 30 minutes later my guts/stomach were back to feeling sour and that lasted long enough that I went back to bed and then didn't feel like eating any dinner. I later ate a very small amount of bread and some whole milk with Glutasolve mixed in it. The Glutasolve is supposed to help with GI issues. I can use all the help I can get with GI issues.

On Tuesday afternoon I went over to see Father Ken at Pax Christi Catholic church for Annointing of the Sick.

Wednesday evening Julia McCusker from Troop 628 brought a multi-course feast consisting of Beef Stroganoff (on of my very favorite meals!!) and a number of side dishes and other meals. I tasted a bit of it that night but unfortunately just enough to get a taste which was quite pleasurable. I hope the boys leave enough leftovers that I can get a respectable meal out of it. It sure tasked good.

I think that we'll get the jump on the laxatives BEFORE the next chemotherapy sessions. In the clinic there a bunch of little old ladies and men. The look pretty calm sitting in their recliners hooked up to their chemo bags. Probably because the know the good stuff to use for laxatives and when to take them. I'll have to pump them for tips when I'm back in there Monday.

Today, Cathy put together a spreadsheet to keep track of all the medicines and fluids that I'm supposed to take each day. Together on one sheet all the tasks are daunting. But it's good to have a place to track progress (or my lack of it).

I picked up 4 cases of formula that will be enough for only 12 days if only formula can be used. The $100 price tag was steep and I'm still not sure that the formula I tried out is going to work. After Friday the price tag jumps to over $140.

My salivary glands seem to be producing less salivation each day. I'm using Biotene toothpaste but I'm going to have to step up performing frequent mouth rinsing.

Treatment - Day 1

Today was the first day of chemotherapy and radiation treatment. Chemo went a lot easier than I expected. The visit started with a bag of saline and a visit with Dr. Klancar. She was quite helpful in answering questions and making an appointment with radiology to check on my PEG-tube. It took a good 90 minutes to go through an entire bag of Cisplatin. The treatment room was a little cool for me and the room temperature fluid going into my vien didn't help. So I had a blanket on my legs, the Prayer Shawl (from Pax Christi) on my shoulders and two rewarmable bags on my arm.

The chemo treatment was rushed so I could make my radiation treatment appointment. The radiation nurses there took charge and secured me to the table quickly. The procedure went smoothly and I didn't have any issues. The .5 mg of Ativan might have helped but I didn't really notice much affect. I'm not very claustrophobic so that wasn't bad. Holding still for 30 minutes wasn't too bad except for my elbows started to hurt due to resting on unpadded metal. I had some involuntary twitches that seemed to affect my entire body. Breathing through my mouth is difficult due to the mask and dentral trays. Hopefully my nose and sinuses stay clear.

After radiation I went to Radiology to get the PEG-tube checked on. It has been very painful the last couple of days. I cannot stand up straight or walk much due to not being able to take a normal breath without pain. They ran an imaging machine and then an ultra sound and said that the placement of the tube looked good and that it was likely that I had a significant internal bruise. Their recommendation was to take more pain meds. Bleh.

After the radiation I was feeling a bit "up". Like someone had slipped a shot of espresso into my chemotherapy bag. That feeling has gone away now. My throat hurts a bit and I'm kind of tired; more than I would normally be at 9 pm.

Radiation treatments will take place at 12:30 pm the rest of this week. My mom has rides lined up for me this week.

PEG-tube Procedure Completed

The PEG-Tube procedure was completed today. Cathy was with me at the hospital from 8am to 4pm.

I thought the procedure was to be done under general anesthesia but instead they used a local anesthesia along with some other drugs and I was awake for the entire thing. I don't remember the actual tube being placed (one of the drugs makes you forget) but I definitely recall the "wire" being threaded through my nostril, into my throat and then to my stomach. That was weird.
This link explains the procedure in more detail: http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

The recovery period took a little longer than expected as I came close to passing out on my first walk down the hall. The lack of food since midnight and the pain meds did a double whammy on me.

My chest/stomach feels like I have a really bad bruise. I don't think I'll be doing any sit ups tonight. Driving is also out of the question due to the Percocet pain medicine.

During recovery we met with the nutritionist. The formula that needs to be used will not be covered by insurance. That is going to get expensive.

I've Been Tatooed!

I picked up the dental trays today. These are basically mouthguards but really thin. Dr Scavuzzo made two sets. One set for at home for flouride treatments and the other set for during radiation treatments. The home set has more room in them for the flouride. Dr Scavuzzo and I spoke at length about the affect the radiation treatments are going to have on my teeth. The lack of action from the salivary glands is going to cause havok on my teeth and I'll have to be drinking a lot of water and rinsing my mouth out frequently to make up for the lack of salivation.

I was also fitted for the radiation mask today. The purpose of the mask is to hold my head in the same position for each treatment and to help the nurse position the radiation machine. The fitting process was a little like being waterboarded. The mask is made of plastic and is heated prior to placing it on my face. It was very hot and felt like a sheet of plastic was placed over my face. My reaction was that I couldn't breath! But the mask is a mesh so there was plenty of openings to breath through. Unfortunately, the first mask didn't mold to my face right so a second one had to be made. The second time was easier. With the mask on I cannot open my eyes and have to breath through my nose. I hope I don't catch a cold as that could make using the mask rather difficult.

As the mask was drying the nurse put a dot tatoo on my chest. I think they use that and the mask to position me on the table.

After the mask was complete they injected me with an iodine solution and ran me through the CT scanner. I've had the iodine before so I knew to expect the nasty tasted in my mouth and the feeling like you've peed your pants. But this time my stomach reacted badly. While I was going through the CT scanner I felt like I was going to hurl. That would have been rather incovenient at that time since I still had the mask on and would have been vomiting through the mesh. The 16 ounces of Gatorode I had downed before the appointment could have had something to do with my stomach's reaction. If I have to do that again - they said I shouldn't have to - I'll be sure to drink only water.

The (outpatient) hospital visit to install the feeding tube is scheduled for next Thursday.

My neighbor Karl sent over a chicken that he smoked today. It was great! Very tasty. Sean had thirds.

Two steps forward, once step back

I made it to the dentist this morning to get impressions made for trays. The trays will be used (daily?) to soak my teeth in flouride and then also used during the daily radiation treatments to help prevent my fillings from causing burns on my lips and tongue. Dr Frank Scavuzzo DDS is a great guy. Having a family dentist that actually knows and cares about you has been very helpful.

Cathy and I went to the hospital this afternoon for the simulation and mask fitting. However, when we mentioned about the dental visit earlier in the day the nurse apologized and said they could not perform the similuation and fitting without the dental trays. Nonetheless, we had a good visit the the nurse from Dr Davis' office and she was able to answer a number of our questions. So the trip to the hospital wasn't a waste of time.

We called Dr Scavuzzo's office to see when the trays would be finished and then we rescheduled the simulation and mask fitting for Thursday afternoon.

PET Scan Results

Dr Nemechek (ENT Oncologist) called this evening with good news from the PET Scan! There is no evidence that the cancer is in the lymph nodes. In fact, he said it was the best PET Scan of any patient of his in the last four years that has tonsilar cancer. The radiation therapy will essentially destroy both my tonsils even though the cancer appears in only the right side tonsil.

I worked a full day today at a client site. By the end of the day I was feeling pretty beat. My lymph glands on the right side of my neck are feeling tender. Dr Nemechek said it's likely due to the biopsy work he did. I hope so since the tenderness is a new thing within the past two days.

Feeling better than the prior night I managed to get in an hour on the treadmill but at a 30% decline in my normal output. I would like to do more but I don't want to push my luck and it seems I need to keep as much weight on as I can instead of working it off.

PET Scan

The PET Scan was interesting. Parts of it weren't as difficult as I expected. The injection of the radioactive sugar had no side effects. However, the technician sticking the IV into me must have been from the "B" team as she was fishing around in my arm trying to find a vein. I finally told it wasn't going to happen and she used a vein on the back of my hand instead. The Barium "milkshake" was challenging to choke down. I tried to see if this lady sitting next to me in the waiting room wanted a swig. She turned me down. I probably could have gotten away with not drinking it all as nobody checked how much was still in the cup.

The IV solution was to mix in my system for 40 minutes while I was resting. By my reckoning it was not more than 35 minutes of a wait.

Going through the PET Scan/CT machine was pretty easy. I just closed my eyes an relaxed. However, after 15 minutes I found out that my elbows where not on the padded part of the table and they were starting to hurt. At 20 minutes the pain was bad. By 25 minutes I couldn't feel my elbows. Forunately the test was over.

Results would be forthcoming on Monday.

PET Scan Tomorrow

The PET Scan is tomorrow. I’ll meet with a dietician some time next week to discuss when the feeding tube is to be installed (required) and what type of food is to be used. I’m 5’10” and weigh 160 Lbs. I’m in great shape. I ran a mountain 5K race while at Scout Camp at 7000’ elevation in 22:58 (good for me as I don’t run but once a year) and I normally climb at least one 14K mountain each summer. I’m lean as can be and going into Chemotherapy and Radiation that’s a very bad thing. I’ve been told to eat as many good foods as possible and try to bulk up. It’s not easy when your throat hurts to talk and even more when eating. I’m working on coming up with a better list of soft foods and protein “bulk up” additives.

Radiologist First Visit

The Radiologist says I need to meet with my Dentist to make sure my teeth are OK and to get me fitted for some sort of device to use during the radiation treatments. Something to do with preventing backscatter from my fillings. I need to get more info on this. That appointment is next Tuesday.

The radiation is going to be such that by the end of week two I won't be able to talk much nor will I be able to eat any food in the normal method. A feeding tube will be necessary. I also need to get fitted for a mask that will be used during radiation. The mask has dual purposes. First of all it holds my head in place during the radiation so that I don't move and end up radiating my brain. That's good as I need all the brain cells I have. Secondly, the mask is used to line up the radiation "gun" at certain points to ensure they are hitting all the right spots.

Full chemotherapy and radiation is expected to start in 10 to 15 days. Each weekday morning will take about an hour for radiation and one day a week they'll add chemotherapy to that. That schedule will last for six to seven weeks. By week three they said I won’t want to eat anything by mouth because my throat will hurt so bad and my taste buds and salivary glands will be toast. Hence the feeding tube. I’ve told my wife I’m going to chase her around the bedroom with the feeding tube :) – just the thought of it grosses her out. I’m even going to have to get special toothpaste, mouthwash and gum to use.

Biopsy Results - Finally!

We were expecting the doctor to call with results on Monday or Tuesday. No results but lots of people calling to find out what the status was. Cathy fielded a lot of those calls for me since talking was difficult. Wednesday morning, July 8th (my birthday), while I was still in bed (I was amazingly sleeping about 12 hours a night) Dr Nemechek calls with the bad news. The tumor was definitely cancerous. He then directed me to call the Hematology Oncologist (deals out the chemotherapy) and the Radiation Oncologist (shoots the radiation into your body that kills cells). I got in right away with the Hematologist that day but the Radiologist is a week off. When finished with the Hematologist she pulled some strings and got me into the Radiologist the next day – I’m still getting lucky!

Biopsy Recovery

The next day after my third or fourth dose of Hydrocodene was working its magic my wife drops the bomb that the doctor told her it was cancer. I think she was reluctant to come right out and say it and it was hard for her and she wasn’t sure what my reaction would be. I think I took it pretty well since I had figured out that things weren’t normal and I was way beyond the “Take two anti-biotics for ten days and call me if it doesn’t work” stage.

Biopsy Surgery

The biopsy was today at 2pm (only 20 days after my first visit to my primary care doctor!). I think the surgery would have started right on time but Dr Nemechek and I got talking for a while in pre-op.

While I'm in recovery (from general anesthesia, a buttload of pain and a serious lack of cute nurses) Dr Nemechek talked to my wife and mom and gave them the news that it was a tumor that was removed and his diagnosis that it was cancerous. He didn't tell me anything, but that's OK because I was kind of out of it anyhow. About all I knew was that to get out of recovery I had to do three things: eat a bowl of Jello, get my oxygen blood level up and take a whiz. Being groggy from pain meds makes it tough to take a full breath of air so they give you this two handed cylinder thing with a rather phallic looking tube thing that comes out of the cylinder that you breath out of. Well, after much giggling and playing with the phallic looking tube (it extends and you can make it “dangle” various directions much to the disgust of your wife and every nurse on the floor) I finally got my blood oxygen up to the correct level. The Jello was next and it was very easy as I hadn’t eaten any solid foods since the prior night. Taking a whiz was greatly aided when the nurse hooked me up to a brand new IV bag of saline, cranked it to full drip and included a new dose of pain meds. I had never become so dizzy in such a short period of time. I literally had to lay down and let it pass. But a few minutes later it was Mission Accomplished in the bathroom.

We stopped for a Jamba Juice on the way home that night after being released at 8 pm. I had no idea what was going on but the cool, fruity nature of the Jamba Juice worked great on my burning throat.