Intolerance

I can't drink anything cold. I get a gagging reflex when I do, and if I touch cold stuff it feels like frostbite. This is a side effect of the oxaliplatin infusion. It sucks. Warm water is horrible to drink. At least the nausea from the Xeloda is under control. My biggest problem now is appetite and fatigue. I'm still not sleeping that well, so the last three days haven't been that much fun. At least my recovery from surgery seems to be getting much better.

love,

CJ

Adventures in Chemo

I have two chemo drugs; one a pill (Xeloda) and one an infusion (Oxaliplatin). I have to take four pills twice a day for the Xeloda. This morning I was hungry, and had my English muffins and juice before the pills. They recommend taking the pills with milk or food. About an hour later I was vomiting and quickly took some Zofran to stop the nausea. I didn't think that the side effects would kick in so quickly, but it might have been stress or nerves. Dr. Greene said that some people do react that quickly, but he agreed that it could have been nerves. Either way, not the best way to start the day.

I drove to the clinic and had my lab work done, then met with Dr. Greene. He said I'm a bit anemic, and that if it gets worse they'll give me a shot of Procrit to boost it. Then I went in to get my Oxaliplatin infusion. They're using my portacath, so I didn't have to go through an old-fashioned IV. The infusion took about 2 hours, and other than being boring, I didn't notice any side effects (during the infusion).

When I got home, I quickly discovered the main side effect of Oxaliplatin: intolerance to cold. I tried to drink a glass of apple juice, and the pain was amazing. It felt like I was going to have lock-jaw. So no more cold drinks, ice cream, etc. I also need to be careful touching anything that is cold. Funny having this type of chemo at the start of a Nebraska winter...

The good thing is that this makes the lingering pain from surgery seem not so bad. That has been better each day over the last week, and I feel like the end is in site for that. Then again, I'm still taking a lot of pain pills. Next week I'll try and see if I can throttle those back in the day time. I don't want to attempt that at night until I'm getting solid sleep.

I'm awfully tired. Dr. Greene said this wasn't one of the side effects of either drug, but www.webmd.com disagrees. Stress could be playing a big role in that, but it's not like I'm getting 8 hours of sleep either. Oh well.

Not drinking cold beverages for four months is going to be irritating. With the wide variety of foods I eat, (ha ha) at least I can still eat what I want except for desserts.

The infusion center has comfortable recliners, and you can watch TV (listening with wireless headphones). Every now and then a nurse walks by with a tray of snacks, kind of like an airline attendent. They try to make you as comfortable as possible, and watch you for any serious side effects.

The funny thing is, at the clinic I'm normal. The majority of people have or have had cancer. So if you feel like talking, you don't have to explain a ton of details that a layman would need. The sad thing is that there are so many people there. Young, old, white/black/asian/latino, male/female. The real outsiders seem to be the family members who come to provide support. They are naturally distressed, and scared, and out of their comfort zone. I wish the clinic had some sort of support system for family members. There are outside support groups, but those are meant more for patients. Being a caregiver has to be a difficult task. Jen has been so wonderful and supportive these last 5 months, but I know it's taken its toll on her.

love,

Cj

Chemo sucks

'Nuff said

love

Cj

Chemo Round Two

I start the next phase of my treatment today. Very nervous (scared) about the side effects. Oh well.

Love,

Cj

Surgery Day 2

The room I stayed in was pretty spartan, as most hospital rooms are. It had a TV, and a DVD player, though I didn't watch any movies. I never stayed awake long enough for a movie, though the TV shows help kill time. The nurses checked in on me every 90 minutes, so sleep was in short chunks.

Coming out of surgery, both of my hands were asleep. This had the anesthesiologists all concerned, and eventually a neurologist came in for a consultation. I think that the neuropathy was caused by my arms being outspread during surgery. There's a nerve in the elbow that is easily pinched, causing the neuropathy. Fortunately, this went away by the third day.

I had to get up and walk at least three times a day. This was a production for several reasons. The first was my reluctance to do it. It was painful, and extremely exhausting. The second was all the cables, IVs, etc that had to be detached. I couldn't understand how one day I could be healthy and hale, and the next, an invalid. The first few walks were less than 50 feet, and left me exhausted. I'd return to be and dread the next walk.

I don't remember if I started on Jello on day 2 or day 3. I liked the orange flavored jello, but the raspberry was horrible.

love,

Cj

Surgery Day 1

Now that I've got a bit more stamina, I wanted to put in writing my surgical experience. Here's the first day.

I woke up at around 4am, partly because of nerves, and partly because of hunger. I had been on a bowel prep where I couldn't eat for about 36 hours. So I was pretty hungry. We arrived at St. Elizabeth's around 5am, and the first thing I noticed was the smell of bacon wafting up from the cafeteria. Torture!

I had gone through pre-admission already, so there wasn't much paperwork to do. Next we were ushered into a room where an RN ran through 100 questions, and generally prepped me for surgery. Things started to happen fast. First they wheeled me into a room to give me an epidural. After that I was rolled into the surgical suite (the cleanest room I've ever seen), and I tried to crack jokes with the nurses and anesthesiologist. I probably came across as extremely nervous, but I wasn't.

In a way, I was really excited about the surgery. Some of it scared me, but I was still excited. Looking back, that was just silly. Between 5-8% of the patients who go through similar procedures don't make it off the table alive. So, I don't think I'd like to go back again.

I woke up in the recovery room, and despite being ready to go, I had to wait til my room was ready. That took about an extra hour, but I was so drugged up, I didn't really notice. I remember talking to Dr. Pitsch, but what he said was quickly absorbed by all the drugs in my system. Why doctors try to tell you stuff when you're under the influence is silly.

Eventually I was taken to my room, and had a short rest before everyone started checking in on me. The room wasn't fancy, but it seemed ok. The nurses all seemed very nice, and helpful. I had an oxygen tube and a foley catheter, plus several IVs, and monitoring leads. There was also a drain tube (ironically named Jackson-Pratt) that drained fluid out of my buttocks. I vaguely noticed my colostomy bag, but didn't really worry about things too much. I was pretty much drugged out. I had three small incisions closed by metal staples, and one monster incision (7" or so) also closed with metal staples. The small ones had been used for the laparascope.

After a few hours of rest, the nurses told me that I needed to get out of bed. As in stand up. The thought was horrifying, even through the veil of all the narcotics coursing through me. Somehow I managed to get my feet over the side of the bed, then two nurses helped me stand. I have never felt such pain. It felt as if someone had stabbed a fistful of knives into my stomach. The nurses let me sit back down, then stand again. I think I fell asleep as soon as I was back in the bed.

Eventually everyone was allowed into the room to visit me, and I had a parade of family and friends come in to wish me well. I don't remember much about that, except that I was very thirsty and just got ice chips to drink after a fashion. I think I slept pretty well that night, despite the periodic intrusions by the nurses.

love,

Cj

Thanksgiving

This has been a difficult year to say the least, yet I find myself thankful for so much. I have a wife who puts up with me through thick and thin, and two daughters who make me realize that there are more important things than my own wants and desires. I have a sister and brother-inlaw who are as supportive as can be in the midst of their own pain.

I have two sets of parents who love me no matter what I do, who support me in word and deed. Who set an example I always strive to follow, yet never quite attain.

I have brothers and stepbrothers, aunts and uncles, cousins and neighbors who are pulling for me, urging me to keep my chin up even when things seem darkest.

I have friends who listen when I need to talk, and talk when I need to hear a familiar voice.

The last 6 months have changed my family in innumerable ways. The loss of Rachel and my illness have brought us closer than ever, and broken down barriers that had built up over time. The other day I debated with myself whether I would enter into a faustian bargain. If my cancer was the price to pay for bringing my family closer together, would I pay the piper? Would I go through the pain and fear that has haunted me since July? I was never able to come up with an answer. Fortunately, that's a decision I don't have to make. I wish I could go back and do things differently, but I can't. The outcome wouldn't be much different.

love,

Cj

Fear

Sometimes I'll be trying not to think of anything important, when the thought runs through my mind; what if I go through all of my treatment, only to have the cancer re-occur? This is a devastating thought, and I always try to push it out of my mind as an irrational fear, but it isn't. I'm sure I'm not the only cancer patient to have this fear, but that doesn't matter much to me. I just don't want to be paranoid for the rest of my life.

love,

Cj

A Bit Better

Well the word from the Doc was to double the dosage, and it seemed to improve things. One of the girls woke up at 12:20am, but I was able to fall back asleep until later when another of my beautiful daughters started crying. So, I didn't get a great night of sleep, but compared to the previous week, it was wonderful. Hopefully tonight we can all sleep through the night.

love

CJ

No Luck So Far

The new prescription didn't perform any better than the old ones. I fell asleep around 9pm, and woke up at 12:15am. After an hour of tossing and turning in bed, I climbed into the chaise and managed a few hours of sleep. I'll give my doc a call in a bit and see if he has any ideas.

love,

Cj

Another night, another prescription

Tonight we're trying Amitriptyline as a sleeping pill. It can't do any less than the last two prescriptions. I'll post notes in the morning, hopefully around 10am... ;)

love

Cj

So much for the new sleeping pills

I woke up right at 12:45am. Slept perhaps another 1/2 hour between 12:45 and 7am. What fun.

love

Cj

Sleep, perchance to dream

Well, my pain meds are much better, but I'm still not getting quality sleep. Last night is a perfect example. I take my two pain pills, and my sleeping pill at 10pm. I fall asleep in short order then wake feeling fantastic. Refreshed, energized, etc. Then I look at the clock and see that it's only 12:45am. Less than three hours of sleep!

So, I tossed and turned, trying to fall asleep. Around 4am I took another pain pill, but it didn't make much difference. I probably slept another 45minutes total before getting out of bed.

I had been on Restoril (Temazepam), and decided that a change of scenary was called for. My doc switched me to Xanax and hopefully that will help. Interestingly, a lot of the side effects of Restoril are symptoms I have that I had attributed to surgery. It will be interesting to see if they go away when I switch.

I love sleep. I love it more than eating. I have no idea how insomniacs survive. I sure would have trouble.

love

Cj

Chemo in sight

I start my final chemo series on the 28th of Nov. This will consist of oxalipalatin once every three weeks, and a pill (Xeloda) taken daily for two weeks straight. Then I have a week off before starting back up on oxalipalatin. This will go on for four months, So I should be done by the end of March. It'll be nice not to have an IV pump since I'll be taking Xeloda. After that, my treatment is done!

love,

Cj

Snow Fall

As I look outside, snow blankets my neighborhood. I've taken my pain pill, so a sense of calm slowly starts to take hold. I've found that my life seems to revolve around my pain medication. My mood, my pain, my sleep, all depend on these pills that only partially deliver on their promise. When the hydrocodone wears off, I waken, both mentally and painfully.

I don't like this phase of life. I'm simply putting in time, with such a small return on all the effort. I walk to exercise my legs, and try to focus on the future. In doing so, I'm ignoring the present. Sometimes it's just to hard to handle the day to day, and I want to curl up in a warm blanket til this is all done. I know this is childish, but for now that's my coping mechanism.

love

Cj

For just 10 minutes

I'd like to be able to sit down without pain. Just 10 minutes. Drug free, comfortable in a reasonably padded chair. I never appreciated little things in life like this until now.

love

Cj

Stunned

My employment with Brownstone Research Group was terminated by management on Wednesday. I won't comment much on it other than I didn't expect it considering promises that were made to me when my diagnosis became public. I'm not going to take it lying down.

love

Cj

A Turning point

With the latest set of painkillers, I've finally been able to get decent amounts of sleep the last few nights. I usually go to bed at 7:30, and I'm asleep by 9pm. Invariably I wake up around 1am, then sleep until Jen wakes up for work at 6am. This has made an unbelievable difference in my energy, my enthusiasm, and overall health.

I still run out of steam easily, though eating properly and doing my mini-walks seems to be helping that. My butt still hurts a lot, and the pain seems impervious to painkillers. But it's getting better every day. I think that time will heal that, if I continue to get enough sleep.

I decided to see how hard driving my car was today. This morning before taking my pain meds, I hopped into the old Jetta and took a spin around the block. It was pretty comfortable. I had to sit on a pillow of course, but it was better than being driven by someone else. I guess I could anticipate the bumps and jostling better as a driver.

Hopefully this is one of those turning points I've experienced through my cancer treatment where it just seems like things are markedly better. That'd be nice.

love

Cj

I get by with a little help from my friends...

My mom and Bill are leaving tomorrow, heading back to the great Northwest. They've been so helpful with getting me settled back at home, as well as lending emotional support. I don't know what I'm going to do without them. Bill has been my stepfather since I was an annoying junior high kid, and despite my best efforts to drive him crazy, he's always given me all the love and support I could imagine. When I let my cancer discourage me, he was a rock to cling to. I could go on describing how much he's done for me over the years, but words wouldn't do him justice.

Bill, I love you

Cj

exhaustion

I apologize for not keeping this journal more up to date, but between the chronic pain and my pain meds, I don't have much energy to write for more than a few minutes. I'll write more about surgery/recovery later, but suffice it to say; it's the hardest thing I've ever been through.

love,

Cj

Progress

Had my staples removed yesterday, so now I'm free of anything that'll trigger the alarms at the airport. Nothing exciting happened at the surgeon's office, and I need to visit him again in a month.

The best thing happened at the oncologist's office. He prescribed an even higher dose of Hydrocodone. I slept pretty well last night, though I did wake a few times. My pain during the day seems much better too with the new dosages. I just took a 1hr nap and feel good though a bit hungover. I've taken two walks today, and I'm going to try and do three a day to build up strength.

I meet with the oncologist in two weeks, and we'll decide then if I'm ready for chemo. I'd like to wait a full month, but we'll see.

It's still hard to concentrate and type, so entries will be short, but I'm doing better. Thanks for all the support everyone continues to give me.

love

Cj

Staple Removers

Today I meet with the oncologist to plan out the next steps. I can't envision starting chemo very soon. I have no energy, have lost 10 lbs since discharge, and am just starting to get a little sleep. Chemo would wipe me out physically and emotionally.

After the oncologist I meet with the surgeon to have my staples removed. I have no idea if that's going to hurt, but I expect it won't be too bad.

love

Cj

Much better

I slept much better last night, though I still woke up several times. Each time I fell asleep much faster, and my sleep seemed much deeper. If only the girls had slept as well, I might have slept through the whole night. Sleeping in my bed for the first time in two weeks was wonderful. Amazing what the proper prescription can do...

love,

Cj

Better living through chemistry

My pain pill travails might be finished. Previously I had been prescribed 5mg of Hydrocodone for pain, and this clearly wasn't doing the job in the night time, or in the day time. Today at my appointment with my radiation oncologist, I was in such pain that I couldn't sit still for more than 1-2 minutes. So obviously the 5mg wasn't strong enough.

I had spoken with the nurse at my surgeon's office the day before (to get a refill of the ineffective 5mg Hydrocodone), and she had called it it. Then this morning I decided that enough was enough and called my GP's office to tell my tale of woe. Eventually they prescribed 7.5mg of Hydrocodone for just before bedtime. Hopefully this will knock me out so I can get a real night of sleep.

The funny thing was when I went to pickup all the meds from the pharmacy, the surgeon's office had only prescribed 2.5mg of Hydrocodone, despite me telling them how ineffective 5mg was. A serious disconnect between me and the surgeon's office is clearly evident. If the 7.5mg dosage gives me a good night's sleep, I'm going to raise heck with the surgeon on Thursday. A simple modification to my dosage would have made the last two weeks much more comfortable, and probably sped up my recovery.

Oh well, enough griping.

love,

Cj

Insomnia

Something can't be right with my recovery. I'm only getting about 3 hours of sleep per day. I wake up, in mild pain, then can't get back to sleep for hours. The pain pills don't seem to affect me much, at least not as well as I remember them from previous surgeries. Maybe I've built up a tolerance.

Anyways, it's awfully annoying not to get much sleep. This too shall pass, but until then I'm not much fun to be around.

love,

Cj