Friday, April 01, 2005

 

Long Time

Admittedly, it has been a long time since I last posted, and many things have happened. If anybody ever looks at this, I think the assumption that I would have made was that I died. Not the case.

Some things have gone downhill at bit, though. The fairly extensive break off of chemo did end with news of progression - to the tune of "at least" 10 more lesions in the liver. This, in turn, started an almost comical process of chemotherapy. First was a retry of 5FU/Leucovorin, Irinotecan, and Avastin. Ouch. My body did not like that at all, and I lost probably about 2o pounds in two weeks. Next try, in early March, was Erbitux as a single agent, which we are still in. First dose is what is called a loading dose. To be honest, I was a little scared of having an allergic reaction. Nevertheless, we started the infusion, and I started to feel a little weird and get the chills. The nurse then turned it off, at which point the full effect of the benedryl predrip kicked in, and I was out like a light. The drip then resumed and was completed.

The loading dose is much, much different from the second dose. Or maybe I just had some type of bug - who knows, but it put me out for two days, during which I had an incredible pounding headache. I got the drip Tuesday - by Thursday night, things are ok.

Friday. A little acne appears. I think to myself - good deal, this means that I'm getting a response. By the following Tuesday, the rash is pretty bad, but not too bad. We do the first maintenance drip. The nurses are all elated at the rash - "Isn't that a good one!". "Yippee." Drip goes well - I instantly fall asleep and end up staying an extra hour or so because that's how long it takes me to wake up.

The rash continued to get worse, though. At one point, I had, no joking, 500 whiteheads on my head alone. Unfortunately, the only thing that calmed it down was time - we tried both Tetracycline and Metrogel, and neither seemed to calm it, although they probably were good in preventing any kind of infection. This last Tuesday produced a slightly different response from the nurses - "My goodness."

At this point I'm at two missed treatments waiting for the acne to get manageable. The plan right now is to give it one more time, at a reduced dose, to see if we can do it with just a moderate rash. I'm not sure yet whether I'm going to do it or not.

There is good news for others in this, though. I have had none of the other side effects associated with chemotherapy. Appetite and GI system have been fine, and I feel pretty good besides the rash. I think that most that get it do not get a serious rash - just a moderate one. Under those conditions, if you get some tumor response it would be a really good thing.

So why have I been away from the blog for so long? Admittedly, I've been a little down for the past couple of months. I passed the one year anniversary, looked at where I'm at (third line chemotherapy with not much else to try afterward) and realize to an extent that I had a pretty good first year, all things considered, but that the streak will probably end at some point. I'm a sincere guy - I'm not going to try to cheerlead others if I'm the one who needs to be cheerleaded. I'm starting to be a little more upbeat, though - maybe putting in this blog will get me started again.

Until next time - best to all.

Monday, January 24, 2005

 

T-7

T-7 days until chemotherapy starts. As I used to say at the fine institution where I obtained a Bachelor's Degree in Science, seven-and-a-butt days. More precisely, even, "Sir, there are seven and a butt days until chemotherapy. The menu for lunch is baked chicken, mashed potatoes, apple pie, and cherry drink. Seven and a butt days, Sir.

Not to get too far off task, but Warren Buffet is an extraordinary guy. Not only did he make billions in the stock market, but he also owns the greatest commercial-maker of all time, Geico. Really - think about how creative these guys who write these commercials are - then think about many people have gotten car insurance from Geico because of the commercials. My favorite is actually the latest one I've seen. In it, a guy is saying how using Geico.com is so easy that a caveman could do it. Then they show a caveman getting really upset at him (using yuppieish words, nonetheless). It ranks up there with Sponge Bob. These guys or girls who think of this stuff deserve the millions that they get paid.

Seven and a butt, Sir.

Joe

Sunday, January 23, 2005

 

T-8, Pain, New Meds, What Progression Feels Like

Tonight (this morning rather), I'm going to toss a potpouri of material out. First things first - we are at T-8 and counting until chemotherapy starts again. Oh boy. I am really not looking forward to it. The most pleasant things about doing it last time were my two oncology nurses - one at the infusion center and one that came to the house to disconnect me. As it turns out, the visiting nurse probably won't be doing the visiting again, which kind of bums me out. I guess the practice is starting to move away from her company, and in the meantime I was discharged due to inactivity. I'll miss her; it would have also made things so much easier - I know them, they know me, heck - I still even have their pump. We'll see what happens.

Pain is starting to be a problem, more or less full time. We are going to take two approaches to solving it. First, I've started taking oxycontin twice a day. It seems to help, although I can (and have) still taken a lortab if it is not working as fully as it should. The second thing is that I am probably going to go see a doc who specializes in pain management. Hoping he can help - the source of the pain isn't in a place that is particularly easy to fix - it is associated with the a malignancy in the soft tissue above my rectum, but what is also apparently starting to constrict it from the outside. It also causes urgency and pressure quite a bit.

I think I know what progression feels like now. It's been documented on CT Scans and CEA; I can relay that at least in my case, it is symptomatic too. Pain is one part - I get pains across the bottoms of my lungs from time to time, and my right arm gets sore from time to time as well. As I have already mentioned, the rectum causes all kinds of consternation. I am also getting fatigued a bit earlier than what used to be the case. Finally, every once in a while I feel poisoned. Especially if I'm tired, I'll lay down and my entire body will more or less ache, and I'll even feel a caustic, burning type of feeling in certain parts of my body. I can almost always shake it with a lortab - I'm thinking that the acetomitaphen, since it is an analgesic, is probably what relieves it. I told that to the oncologist, and he didn't say anything back.

Will continue to fight through this thing. Although I have been feeling a little worse each day for four days or so, I'm hopeful that this trend will reverse and I'll go skiing next week, as planned. If not then, I really hope that the chemo can start to calm some of these symptoms down.

Take Care - Joe

Thursday, January 20, 2005

 

Latest Results and Thoughts About It

Well, I went to get scans last Thursday, and I saw the doctor this past Tuesday. Its pretty apparent that the party is over. In the lungs, 5 or so tumors are discussed and all have grown slightly (they are all still under a cm). Not such a big deal. In the liver, the three prominent tumors that have been there all along all at least doubled in size, so the largest is now about 2.5 cm big. Oh, and there are at least 12 new lesions present. Yuk. Surprisingly, the pererectal area looks to be the same size - it is the most bothersome, however, from day to day. The doc says that imaging from down there is unreliable.

The doc and I universally agreed that the time to stop watching is now, so I will start chemotherapy again not next week, but the week after. I'm going to shoot to go skiing with the two boys next week.

The first time on chemotherapy is scary. The second time, I don't think, is as scary, but the thought of it is worse - you already know, to a large extent, what is going to happen, and you don't want it to happen. I don't want to loose my taste again for the foods that I like; I don't want to have even more bowel problems than I have now; I don't want to be nauseous; I don't want to wear the pump around; finally, I don't want to lie on the bed crouched up for two days. It kind of stinks that I know each will happen - it is indeed strange that a person would actually trudge themselves into a clinic to voluntary have this happen. But people do. Many, I suppose, will have worse side effects than I. They are brave people - any of you reading this who do it - you are a brave person.

A little insight, now that I think of it. Many parts of chemotherapy can be made better by using drugs to control the side effects - nausea and diharrea are prime examples. However, even with the best medicines, 50% is just riding it out. I think that is why attitude is so important. You have to have a good, optimistic attitude, otherwise the riding out part will get overbearing.

I was blessed. My doctor and I agreed that typically, metastatic CRC guys or girls do not get six months off. I did. My hope is that I can do these treatments for a finite amount of time, and get a second vacation. That's the goal.

Got to go - today is the day that I do a minor ministry at the hospital.

Thursday, January 13, 2005

 

Time to See How Things Are Going

For the first time in about 3 months, I went to get a CT Scan today. For the first time ever, they had me wait an hour and a half after I drank the contrast. Usually, it is 45 minutes or so. Don't know whether it means anything or not, either, but the did my pelvis twice.

Now the waiting game - will not find out the results until Tuesday afternoon. I now fully expect to be starting chemotherapy again, and I wouldn't be surprised if we started radiation. Either inside or outside what is now my (another part of my digestive system adapted for use) rectum isn't right - there is pretty much constant pressure or pain, and bowel movements put me out of business with discomfort for a day. All I can really do is wait them out. Warm baths help a bit as well.

Chemo - what should I do? I think a lot of options will be open - FOLFOX and FOLFIRI, with or without Avastin, or CPT-11 with/without Erbitux. Or maybe substitute Xeloda. I think it is all going to depend on whether and/or how much it has progressed. I think if it has progressed a lot, I might just try Erbitux by itself - see if I can get some bang with minimal side effects.

I also worry now about getting too dependent on pain medication. Sometimes I don't feel exactly right, and I worry that it might be pain medication withdrawl. I'm probably being really paranoid on this one - Until the last month or so, I never even took them during the day. And, I'm still on the lowest strength made. Maybe I just want to find excuses for things being everything except the cancer itself. Who knows.

Friday, January 07, 2005

 

Holidays - Perhaps a Little Mad

The holidays were nice. There were a couple of hiccups - there was a lot of pain a lot of Christmas day, and I'm lucky if a day goes by now where something is not bothersome. Still, a blessing.

Went skiing last week with the two boys and my brother and his wife. Did pretty well - I skied most of the day, even pulling the youngest up the tow rope, and made one good run with the 10 year old. He's off to Sugarbush this weeked - I'm going to wait this one out and spend the weekend at home.

The disease has been getting on my mind a bit lately. I'm not really mad about the disease itself, or scared. As I tell the kids - I'm not really scared of anything except snakes. But I digress - three things bother me the most. First, the timeline sucks. I feel kind of bad now (even went to the oncologist two weeks early), but I have no idea (he didn't help much either) whether this means the time is near or far. I may (actually will probably) go back on chemotherapy. Will months on that give me another 5 months like I have just had, without chemotherapy? Will it give me any chemo-free months at all? The problem is that professional and personal goals are inconsistent. I have professional goals that will take a year to 18 months to complete. But in order to complete them, I have to spend less time with the family. So if I try and 18 months doesn't materialize, I've not done what is right by the wife and kids. But if I don't pursue the professional goals zelously and I live 2 or 3 or 5 or 10 more years, I am a loser, and I portray the image of a loser to the kids as well.

Second, I am mad that I won't see my kids grow up and grow old with my wife in my present form. That really bugs me. It is also a source of irritation - if I don't maximize every moment that I have, now, I get irritated with myself.

Finally, I am mad that I won't achieve the things that I wanted to achieve - I haven't had the time that I wanted to build my legacy for my kids. I went into the service at 18 and have been there ever since. My plan was to do that and still have 15 years or so left to live life outside of being a soldier. It was during this time that I would realize my earning potential and take care of the family, get all of the kids through college. Hell, I had dreams about being the head of a company or a congressman. I'm not all bad with it - I don't regret a minute serving my country, which I think I did very, very well. But unfortunately, the nature of the work that I did prohibits me from totally letting my kids or anybody else know the types of things that I did that were beneficial, especially during conflict. And, I don't even get to die doing what I do. Instead, I sit back and watch other people do it, and will probably die of something totally unrelated.

Tuesday, December 21, 2004

 

No Real Change

Not much has changed in last couple of days. Went in to have the port flushed today - once again it was clogged, so I spent an extra hour or so in the cancer clinic getting it unclogged.

Funny how things happen. I was talking to the nurse, who asked how I was doing. I said, "I'm starting to get pain most of the time now", to which she asked when I was coming in again. My answer was, "Going to ride the holidays out - my appointment is on the 7th of January." I thought about the answer for a second - the 7th sounded okay, even though I am starting to get a little apprehensive about the possibility that the tumors are starting to grow again. I may or may not have mentioned this before, but the unconfortableness level is slowly rising to point where now I have pain much of the time, I can't sleep worth anything anymore, and this three week nagging cold is getting on my nerves. So, on the way out, I stopped by to see when my scans were scheduled (they get done 2-3 days before the appointment). The scheduling lady answers, "Dr. xxxxx (my doctor) is going on vacation the week that you were scheduled, so I rescheduled you." "Sooner, or later?", I asked (kind of hoping sooner); "Let me look - I have you scheduled for the 17th." Guess I'll have to wait another two weeks to see what, if anything, is up.

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