Ready to begin week 6?

No choice in the matter ... it begins tomorrow. Jim seems to be dreading it and I can't blame him. We're trying hard to do this one day at a time but it's tough. I find it hard because I've got to look at our schedule for the week and try to ensure that everyone's got rides here & there and that if I need to be away Jim's not left alone, etc. It's harder than it sounds as I'm pretty sure my brain is only working at 70% of capacity (at the most) these days. As for Jim, well, it's pretty obvious why he has trouble not worrying about tomorrow.

Jim had the PICC tube placed Friday afternoon. It seemed to go without incident though it took 2-3 times longer than they told me it would. Then Saturday a nurse came to our house and taught us how to give Jim IV fluids through that line. (I'm so glad that Jim's mom came to learn too) It seemed like a ton of stuff to remember but I did it today and didn't seem to cause Jim any harm so it looks like we're now in the business of doing 3+ hours of IV fluids here each day. It should be easier on Jim since it means less time away from home. Those long days are REALLY hard.

Oh, and late on Friday we saw the surgeon to talk about the possibility of replacing the feeding tube with a new one placed in a different spot/method. The surgeon says that the anesthesia folks will want to know if they can put a tube down his throat - so that is something to ask the doctors tomorrow. On the other hand, I really don't think this surgery is going to happen. The bottom line is that Jim is not anxious to go through another surgery on top of his already weakened state, especially with no guarantees that things will be any better. I stand by whatever decision he chooses; we'll get through it either way.

It was a nice surprise Saturday to find that the nurse who came to our home is also the nurse that has taken care of Jim through almost all of his chemo treatments. Brenda is a lovely person and she works SO HARD! Those ladies in that chemo room are really special people. I thank God that he created people so different than myself; I couldn't do their jobs. If the emotions didn't kill me the medical/icky stuff would! (I obviously did NOT get my Mom's nurse genes.)

My brain is shutting down already which doesn't bode well for Jim as I still need to take care of his nighttime routine. I hate to wake him up for that but it gotta be done.

Treatment - Day 24

I was feeling relatively good this morning until I took Zofran (anti-nausea drug) on an empty stomach. The drug info provided with the prescription says it can be taken with or without food. I took it a few minutes prior to leaving for the hospital. By the time I got to the hospital I wasn't sure if I was going to vomit or not. I'm really looking forward to a time when I don't have to take all these drugs.

After getting fluids and the radiation treatment I set up an appointment on Friday to get a PICC installed so that I won't have to put in an IV each day. That was challenging as the hour long procedure requires the use of Ultrasound. We had to move the radiation appointment around to fit it in.

Also on Friday will be the consultation appointment with the surgeon to discuss moving/replacing the stomach feeding tube. The new tube would be installed in a completely different manner than the first one but I don't have the time or energy to get into that.

I had my mom drive my truck tonight when we got home to see if it rides any better than her Chevy Equinox. It didn't, but it was close. The rough ride to/from the hospital is tough on my stomach issues. I wish I owned a Cadillac that had a smooth ride.

Week #5 - Cathy speaks

Here we sit in the chemo room. We are here each day this week to receive fluids via IV (in addition to Jim's regular daily radiation treatments) because there was worry that he wasn't getting enough hydration. It seems that I may be in charge of doing this at home next week. (Thank heaven no needles involved, they'd just leave an IV in. Otherwise I'm afraid he'd be better off on his own as I'd be passed out on the floor!)

I feel better knowing that he's getting these fluids and I do think it is helping him - but there's still other issues. The stomach tube is still causing what seems to be significant pain when he is upright (sitting or standing). We are going to see a surgeon as soon as it can be scheduled - to look into the possibility of having the tube replaced. This time they would do it laproscopically so that the doctor could see Jim's insides and place the tube in a more ideal spot. It would include an overnight stay at the hospital as it will be a true surgery (vs the outpatient form he did last time.) Jim is very reluctant to go through another surgery; he looks back on the recovery time from when the current tube was placed and he does not want to go through that again. His doctor is very concerned about him attempting to continue as is for another 7 weeks or so. There's enough pain from the radiation that he doesn't need to also deal with a stomach tube issue on top of that. At this point the tube issue is worse than the radiation pain (which is supposed to be significant.)

Due to tube pain he spends most of his day lying down. We moved a recliner into the bedroom so he can switch between that and the bed as he wishes. He's also hanging out in the bedroom because the humidifier is there and because it is more quiet than the rest of the house. Life's going on around him and I'm afraid it gets noisy despite our efforts to be quiet.

How does he look? About the same except with what looks like a sunburn on his neck. His skin there is becoming quite uncomfortable so he puts special cream on it. He shaved on Sunday but I am pretty sure that's the last he'll shave his neck area for some time.

Monday evening he had the usual chemo "high" from the happy cocktail they pump into him. It's nice to see him so active. Sean commented that Dad is pretty funny on Monday nights after chemo. This Monday night it was 11pm and I was nodding off. But Jim felt it was a great time to discuss all kinds of things. I tried to stay awake but I did a lousy job of hiding my efforts. In the end I went to bed and he stayed up.

Unfortunately today he's much different. He's had stomach issues (either pain or nausea or both?) since waking this morning. He's been moving & reacting very slowly and had a heck of a time getting out of the recliner in chemo to come down here to radiation. (Yes, we have moved since I started writing.) They gave him anti-nausea meds and doubled-up on the anti-anxiety drug (which also happens to be an anti-nausea drug) and we gave him additional pain meds but he's still feeling lousy. I think it worsened when he started the formula feeding about an hour ago so we shut that off, which worries me because it means he's had hardly any nutrition yet today and it is 2:30pm.

I know this experience is nothing for me compared to what it is for him. I will say, however, that it is very emotional and tiring for the caregiver. It's tough not knowing what to do to help him and knowing that even if I do all I can it won't be enough to make him comfortable nor can I do anything to take this from him. The boys are trying too; they've even had several fights about things like who would get to help Jim or they yell at each other for being too loud.

Radiation ought to be finished soon, so I'd best get this posted. I'm sure Jim will comment and/or correct me as he wishes. Actually I hope he DOES because that means he's feeling well enough to do so.

Treatment End of Week #4 - Stupid Medical Equipment Tricks

My weight "gain" in my last post didn't take into account the constipation factor. I'm not gaining weight. Instead, I'm down about 10 pounds overall.

I'm still trying to figure out what is setting me on edge. It might be a couple of the meds that are doing it (one for nausea, one for other stomach issues). In the mean time, the radiation nurses are cranking up the music volume for me.

Laying on my back continues to work well to relieve the pain from my liver pressing on the feeding tube.

The hair on my neck where the radiation is being applied is starting to fall out. The skin is also starting to be painful like a bad sunburn.

I have started to have Tinnitus in both ears.

I have a device that is a vacuum pump used to suction thickened saliva out of my mouth. It kind of looks like a small air compressor but it has a can to catch all the crud. It's very similar to the tool used by dentists to clear your mouth. I used it last week to clear my mouth and that worked pretty well. But I still had a buildup of crud a little ways down my throat. I put the end of the wand as far back on my tongue as I could stand and then closed my lips. Bad move. The suction device turns out to work pretty well as a stomach pump. I managed to start the pumping of the contents of my stomach and then my stomach did the rest of the job. Yuck.

The other stupid thing I did was to re-use a bag for my formula. They gave me a 30 day supply and I'm not sure how tough it will be to get more so I rinsed one out and filled it up with more formula. Within four minutes of starting the pump I was at the sink vomiting up whatever had been in my stomach. I don't re-use bags any more.

Treatment - Day 17

I didn't sleep much last night. I think the steroids in the chemo kept me wired all night long. After radiation I slept most of the day.

The louder music helps to drown out the noises the radiation machine makes. But I'm still on edge. It might be one of the medications that I started last week. I'm going to skip it tomorrow to see if it makes a difference.

I think my weight came up a bit. That's something new.

Treatment - Day 16: No Ulcer

Cathy and I just got back from a long day at the hospital. Radiation was at 9:45 and Chemo was scheduled for 10:30. The chemo room was really busy today. They were missing a few staff, supplies were short and there were lots of patients. Fortunately, my nurse had lots of patience. :)

I finished chemo at about 3pm and then went over to radiology so they could take another look at my feeding tube and try to resolve why my stomach still hurts.

First, they shot some contrast (Iodine) into my stomach through the feeding tube so they could use a device like a Sonogram to see what was going on. They didn't use any of the goop on my skin like they do with a fetal Sonogram. So I may not have the correct name of the machine. That was inconclusive so they called up the CT folks to see if the CT machine was open.

So the second thing Radiology did was to walk me over to the CT machine and take a quick couple of runs through it. That took all of 2 minutes.

While the Radiologist can see my liver and the tube close together on the CT scan their machine can't do a scan while I stand up. The Radiologist's theory is that the edge of my liver is sitting on the feeding tube. When I stand or sit upright my liver is putting pressure on the stomach end of the tube and my stomach isn't sure what to make of it so it sends out stomach-like pain signals.

One option to resolve it is to remove the tube and place it in a different position. The tube would be unavailable for at least 24 hours and there is no gaurantee that I wouldn't run into issues with the new location. Given that getting 99% of my nutrition now relies on the tube this isn't a workable option.

I simply need to spend most of my time laying down. Given the amount of fatigue I get from the chemo laying down isn't a problem. Traveling in the car has been a bit of an issue though. But I'm working on the ghetto look by leaning the seat as far back as possible. I just need to wear my baseball hat off center and get some bling and I'll have the look down.

On a positive note I didn't come home with any new prescriptions!

Treatment End of Week #3

Sheesh, I sleep through most of Thursday and Friday and Cathy takes over the blog. Seriously, I did sleep through most of those days and I'm glad for the help. On to the updates...

I think I have an ulcer. The anti-nausea drugs don't help my stomach issues at all. But if I lay down on my back my stomach issues magically go away. Stand up and they're back. According to the chemo staff I shouldn't have chemo related nausea 48 to 72 hours after the chemo treatment. So I don't think this problem is completely due to the chemo. Something else is going on. We'll be discussing this with the chemo staff tomorrow. In the meantime I'm spending a lot of time in bed. Good thing I have a comfortable bed!

Friday was a difficult day on the radiation table. My stomach was feeling pretty lousy and every sound the machine made seemed to set me on edge. The background music was not one of my choice (I eleected to listen to what was already playing) and the volume was not up very high. On Monday I plan to play some rock-and-roll at high volume.

I finished the last dose of medication for Thrush on Friday. My tongue is still white but it doesn't hurt like it did before I started the med.

I started using a patch for pain medication on Friday. The Tylenol wasn't cutting it and it was getting difficult to take the pills. Consequently, I'm not allowed to drive.

Contrary to what a certain 16 year old that I might be related to thinks about these cancer treatments I do NOT glow in the dark and I won't be turning into one of the Fantastic Four.

Basic info about the situation

I heard that we need to provide some basic information for those not already in the know. Some of this was published earlier but other bits might not have been mentioned.

• This cancer is considered to be VERY TREATABLE. After treatment most folks will never see a recurrence
• The PET scan revealed that the cancer is only in the area of Jim's tonsil. It had not spread to the lymph nodes.
• The treatment does not involve surgery. (He had 2 surgeries but they were the biopsy and to place the feeding tube.)
• The treatment consists of 7 weeks of radiation and chemotherapy. Radiation 5 days/week, chemo once a week.
• The radiation does most of the work. Chemo is just there to make it more efficient.
• Jim is not expected to lose his hair though it will probably thin some. (I suspect he's a bit disappointed in this one; he wouldn't mind being bald. And I'm sure he'd love for me to knit him some special hats.)
• The treatment is brutal. The nurse in the radiation department told me the other day that this is one of their most painful programs.
• After treatment is over Jim will still have a number of months of recovery.
  

And ... Jim can expect within a year he'll be back to doing all his usual activities.

Happy Friday!

A note from the nurse (aka "wife")

Similar to last week, Jim was obviously "up" after chemo on Monday. And again it lasted about 24 hours. For the most part the boys and I are happy then; it's much easier to see him that way and can also be somewhat entertaining. On the other hand, when it wears off, the contrast is remarkable and spirits are down. It seems that's where we've been since mid-day Tuesday.

It is obvious that the pain has geared up. Jim has almost completely stopped taking nourishment by mouth due to pain in throat and gums and the possiblity of stomach upset. He has been trying to stay away from the heavier pain killers for similar reasons and because he wanted to be able to work. However he is beginning to withdraw so today I vowed that we are going to start getting serious about managing the pain. (I hope I don't have to live up to what Patrick said to me in anger today, "you are a NASTY woman!" ... LOL)

I’m proud of the boys, for the most part they are doing well with the unknowns, chaos, stress, fear and worries in this household. We’re all emotional and its coming out in different ways. Sean is showing more stress and unhappiness with school than expected. Patrick is his usual self but cranked up a few notches. I have these weird emotional times when a mere kind word or the question "how is he doing?" causes my eyes to well up with tears.

I saw a quote today that gives me a bit of comfort: "Present pains can lead to permanent gains."

Treatment Week #3

Summary
I can't talk much now. My tongue and throat hurt too much. My ability to talk clearly is pretty close to zero -it requires a lot of effort to enunciate. I do mumble quite well.

I'm pumping formula now day and night. Having to get up and hit the bathroom dragging the feed bag and pump requires me to wake up a little more than I want. So I'm losing a bit of sleep. But the added consumption of nutrition needs to be done.


By my scale at home I'm down 8 pounds. The folks at the chemo and radiation offices think I'm only down 3 pounds. Little do they know I'm carrying around 5 pounds of rocks in my pockets.

Radiation treatments switch to 9:45 AM on Tuesday. Hopefully I can get more face time in at a client site if the treatment goes well and my stomach agrees to go along. I can't plan more than about 2 hours ahead these days. Matt Karp is one of our recent Eagle Scouts from the troop. He will be giving me a ride to radiation treatments Tuesday and Wednesday. Matt heads off to college in just a few days.

Tuesday night is also the 10th year anniversary for Sean's Boy Scout Troop. We're planning to attend that.

Details
Monday is chemo and radiation day. Even though I got the double whammy it was pretty smooth. I received a prescription for the first step in higher level pain killer: Morphine. The Tylenol isn't cutting it any more. The Hydrocodone may have caused me to vomit last Wednesday and it also seems to negatively affect my ability to sleep. So I'm a little leery of it. This Morphine must be pretty powerful stuff. The instructions say to take 1/2 ml. For comparison, the Hydrocodone is 15 ml. I haven't take the Morphine yet.


I also have an anti-fungal prescription for a possible case of Thrush. My tongue feels about 2" thick and it's still white but not nearly as bad. Thrush is common with chemo patients. Maybe should quit kissing all the toadstools/mushrooms (fungus) in the back yard.

Today I learned that one the drugs in the chemotherapy cocktail mix is a diuretic. That might explain why on chemo nights I'm hitting the bathroom about 8 times. Ugh.

On Sunday (yesterday) I was pumping the new formula Nutrin 2.0 instead of the IsoSource 1.5. About 3/4 of the way through two cans my stomach started to hurt at 2pm. Thinking the new formula might be the cause I stopped the pump. After 30 minutes my stomach still hurt. I tried a Famatodine (acid reducer) again and that didn't seem to have much effect. I missed 6 PM church because A) I wasn't sure if my stomach hurt due to chemo induced nausea, B) my stomach hurt from the new formula or C) it was gas/constipation.


What seemed to work was to eat constantly. I had a small cup of yogurt and felt fine. Then 10 minutes later my stomach was back to hurting. So I downed another yogurt. Same results. It was getting late and eating constantly wasn't going to work with solid food. So I hooked up the feedbag, filled it with two cans of IsoSource 1.5 and started pumping. Case closed. No real issues today.


I will need to try the Nutrin 2.0 again as I have two cases of the expensive stuff and it requires fewer cans per day than the IsoSource 1.5.

I can still eat some soft foods. I tried mashed potatoes and beef gravy tonight from KFC. I ate it but it burned my tongue and roof of my mouth - too spicy. Still I got a bowl of it down. I'm currently working on half of a small Watermelon as I read this.

Chicken soup is still working for me. Temperature matters. Cold, room temperature or hot and I can't eat. Warm is good. But as long as it takes me to eat it I need reheat even a coffee cup amount of it. I tried an Apple Fritter from Lamars last week and thought it was pretty good. So I bought a second one for breakfast the next day. That didn't work out at all. I could stand to take two nibbles and that was it. Maybe the texture of a fresh fritter matters.

Simple, Vanilla Bean Ice Cream works. But I need to hide it from the kids. They'll go through that faster than President Obama goes through deficit spending money. Cream of Wheat is feed I need to get back to eating.

Cathy, Sean and I made it to the Scottish Festival on Saturday. There were some interesting things going on. I Saw some swords that I suspect are only useful in SciFi/Fantasy novels and highly choreographed battles.

I was walking pretty slow and used my trekking poles for support. The Festival really didn't seem the same as I couldn't enjoy the Fish and Chips and couldn't take part in the Scotch tasting booth like I did last year. Beer was out of the question also. The four block walk home was tough. I was pooped. Cathy and Sean went back later for the concert. I stayed home and performed my nightly dental/throat health procedures:

1. Flush the sinuses - this doesn't hurt and does a lot of good clearing things up
2. Floss the teeth - this hurts
3. WaterPik the teeth - this has worked well over the past few weeks. But the jet of water might be too much. I think I'm blowing out chunks of my gums. I'll try a lower setting.
4. Brush the teeth - this hurts my gums like crazy even through I'm using Biotene toothpaste
5. Mouthwash - this is the Biotene stuff that says it doesn't burn. It does but not nearly as bad as your normal mouthwash like Listerine.
6. Fluoride the teeth - this involved squirting a special bottle of fluoride (comes from the dentist) into the dental tray and then installing the trays on my teeth for at least 1 minute. I think the fluoride irritates the existing sores on my tongue and gums. On the bright side it seems to really put my salivary gland into producing overtime. Tough trade off.
7. Wear a mouth guard at night. I'm grinding my teeth together and that is causing headaches and perhaps issues with my tongue. An antiseptic throat spray helps a bit with the tongue sores. The mouth guard is different from the dental trays which are too flimsy to provide any protection. It's the same mouth guard I used in TaeKwonDo sparing.

Treatment - Day 10: Can YOU eat while showering?

My stomach seems to have settled down enough that I pumped two 8oz cans of Iso-Source 1.5. However, the pump rate was rather anemic at only 75 ml/hr so it took about 7 hours. That's a long time. I pushed the pump rate up to 100 ml/hr at the end. I know, I'm really living on the edge.

The EntraLite pump is a little bigger than an index card and runs on rechargeable batteries. The sound it makes isn't too bad as long as it isn't sitting right next to you. It gets a little cranky if you turn it on but don't start the pump.

Since the pump is rechargeable I can take it and the bag that feeds formula into the pump anywhere. The feeding process was so long today that I took the pump with me when I showered (my weekly one). I hung the pump and bag on the outside of the shower and that worked pretty well. I just had to be a little more careful to not hit the longer feeding tube. I guess that means I can sing and eat at the same time.

Not that I can sing at this point. I'm talking a lot less today. My throat is hurting more, but along with that my gums are starting to hurt also. The radiation nurses said it was due to the radiation. Fortunately, the pain is - so far - only on the inside of the top left gum. My tongue is also doing some strange things. It feels a little numb and it has a white, pasty color. I asked Dr Davis about it today and he said it didn't look like Thrush. Cathy thinks it is and some pictures I found on the Internet seem to agree. I'll check back with the doctor on Monday during chemotherapy.

In news of the really bizarre, I was bit by an insect while in the radiologists waiting room. It was not a spider. At least I don't think it was. The bite swelled up a bit and left a red spot behind. I caught the insect and put in in a zip lock bag. After my radiation treatment I was visited by a Patient Advocate and a head nurse. Apparently getting bit in an office at the hospital is a big deal.

Thank you

I see that Jim granted me access to post so I thought I'd test my newfound powers.
We are very grateful to everyone (friends, family, coworkers, Knights, Scouts, strangers, etc) for all of the well wishes, yummy food, transportation, offers of all kinds of assistance, and especially for the prayers. As with the persistent widow in the Bible, at the very least the sheer volume of the prayers is likely to work in our favor!

Treatment - Day 8: Better living through chemistry

This afternoon was very long. I'm supposed to meet with Dr Davis on Wednesdays. But my radiation treatment takes place at the same time Dr Davis is meeting with the tumor board. So I had to wait about an hour for him.

To help with the nausea Dr Davis prescribed Zofran 8mg and Prevacid 30mg. Those two may have helped a bit as I was able to eat some hot & sour soup and some Hunan beef when I got home. The beef was very difficult to eat but I at all the vegetables. I think my sense of taste is rejecting beef. Just thinking about it now makes me want to go "Bleh!".

After eating I slept for about 4 hours. While I was sleeping Karen Mansfield brought over dinner for the family. The shrimp fettucini alfredo smelled pretty good but I was still full so I just nibbled on the salad which was tasty.

I pulled the feeding pump out of the box, charged up its batteries and read the instructions. By then it was too late to get a feeding started. Hopefully I'll have time tomorrow. Dr Davis was very concerned that I wasn't already using formula and impressed upon me that it was getting down to the wire. It won't be long before I cannot eat anything by mouth.

Treatment Week #2

Yesterday was a chemo and radiation day. It went better than last week because we know what to expect now. My throat is progressively hurting more each day. I'm still using two Tylenol, twice a day for the pain. My taste buds seem to be about 70% gone and my ability to produce saliva has been reduced by 40%. I can still eat most foods by mouth but a lot of things taste like Crisco shortening - the regular version, not the butter flavor. Bleh!

I found out yesterday why I felt so good following the chemo treatment last week. One of the first things they put in me by IV was a steroid. I'm being juiced!! It provides a noticable pick-me-up for about 24 hours.

I'm still struggling with consuming the formula through the feeding tube. Even 120 ml of the Nutrin 2.0 caused me to feel like I had pumped in an entire can of Great Stuff expanding foam. Last night I tried a 50/50 mix of formula and water using only 30 ml of formula. That didn't seem to work too badly but it wasn't a lot of formula either. Tim - my nutritionist - is going to get some samples of other formulas that might be easier on my stomach. I may have to try pumping in chicken broth if this doesn't work but I doubt I'm going to get the number of calories I need from it. I'll also try Ensure. That didn't seem to go down too bad the last time I drank it by mouth.