Re: HI

Doing OK. Change of Tarceva and addition of an antibiotic really helped my face. Appetite is so-so. I'm down about 20 lbs. Kinda have to push myself to be sure to eat.

We are getting ready for the trip. Almost all arrangements done except for oxygen service which I will get finalized this week.

Now it comes down to whether I'll be able to handle the excursions that I have booked. Body is running perhaps 50 to 70%. Definitely not 100% yet.
So...that's that. I made it into the office 5 days last week. Some days were just 5 or 6 hours - but I was able to be productive.

When we get back in July, I have follow up tests for radiation therapy (brain), right chest (cancer) and left lung (pulmonary embolism - blood clot in the lung). Once I'm back, they will do all this testing to determine progress.

So, we'll just enjoy ourselves the best we can until we're back in Indy for testing.

Jill is doing pretty well. She and her mom should be able to handle the excursions. And, should all be OK. Only issue is going to be me. And...I'm just going have to make it work.

Should be a good set of excursions for the kids. Brett and Arielle will be doing some of the same excursions as us. But, they have booked a few on there own -activities that we would not be able to handle.

So...that's what's happening here. Trying to focus on sleep, some exercise, try to eat, control the skin and finish up last arrangements.

Take care and be well. - JimA

Sent via Blackberry. Please excuse short answers and typos.

----- Original Message -----
From: RHETA ALLEN [rheta8@yahoo.com]
Sent: 06/21/2009 07:36 PM MST
To: Jim Allen
Subject: HI

How are you? Haven't heard from you for awhile. Rheta

Oh my!

I haven't written much in the couple weeks. Haven't felt real well, haven't been into work and spent most of the time figuring what to do to feel better.

Let's deal with non-medical first. For weeks we have planned on visiting Julie this weekend. For a couple weeks, it looked like that wouldn't happen. But, I told Jill I was determined to make it happen. We just got home a few minutes ago - so we did make it. The drive was tough and required quite a few stops.

We got to see Julie's new single apartment. It is definitely a keeper. Wood floors throughout. Good room sizes. Very nice.

Jill took Julie shopping for a few necessities. So, we ran around much of Saturday - some times I went in and some times I rested in the car.

Now, medical stuff. The new antibiotic for my skin seems to be working. Obviously, the reduced Tarceva dose may also be helping.

I am having problems with my eyes. They are kinda crusting up. I imagine it is yet another side effect from the Tarceva. I need to use a wet wash rag to rinse them out every few hours. I use a product called "tears" and it helps.

Oh, when we got to the hotel, for the first time, my oxygen equip wasn't there. Had to scramble around calling the O2 company. They finally got everything there within 90 minutes or so. They have always been excellent in the past - and, actually, were pretty good at how quickly they reacted.

So...that should have everyone caught up.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

not a good week

This week turned out to not be very good. Back to the routine of sleeping all the time - I'm assuming from the weaning (again) from the steroids. I emailed Dr Einhorn and he said the symptoms seem to him to be from the steroids or radiation. In any case, I have not felt comfortable driving. I had Jill drive me to see Dr Forkin Wednesday - to examine the sores I have on my fingers. She gave me a prescription cream to use. The sores seem to be getting a little better - but they haven't cleared up completely. I see Dr Einhorn this Wednesday. We need to make a decision regarding oxygen on the Europe trip.

I haven't decided about work this week. It will all depend on whether I get any sleep and how I am feeling. This past week, I couldn't have made the drive. But, I'll have to see how I feel this week. No need to risk me and others if I am not feeling right.

Avery's birthday party

Today was Avery's 1st birthday party in Joliet. We drove over the night before. O2 supplies and equipment had been delivered to Jill's mom's house. I pretty much went to sleep shortly after we got there.

Saturday AM, Jill and her mom made a trip to Mitchell's to buy Mona's tortellini's to take back to Indy. We headed to the party at about 1PM. Quite a party.

The "crowd" was sure loaded with babies and toddlers. The star of the party was really cute and acted as you would expect from a star. Pics attached.

Abby & Omar served up excellent food - beef sandwiches, pasta, mac and cheese, fried chicken, and more. It was quite a gathering. It was good to see a few of the people we met at the wedding.

I pooped out and napped for a while. When I woke up, everyone was cleaning up. We all headed to Abby and Omar's house. Many people ate once again.

All in all, it was a great day.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

Three days off the Tarceva

I have been off the Tarceva for three days. I also took my last steroid this morning. My face is feeling a little better - you couldn't tell by looking at it. But, the soreness and extreme itchiness are starting to ease up. I start up the Tarceva on Saturday - and take it every other day.

One somewhat strange new thing is that I have developed sores on my fingertips. I have these sores on seven fingers. Guess I'll give it another week or so to see what happens. If they don't get better, I guess I better talk to the Dr.

That's about it for now.

Changing Tarceva

Well... After a week or so enduring the increasing itch/pain of the Tarceva-acne sores all over my face, I emailed Dr E with photos. He said that I need to give my skin a break. I am to stop taking the Tarceva for 3 or 4 days.

Once I have stopped a few days, I restart the Tarceva every other day. When I see Dr E on June 10, we'll talk about Tarceva dosage going forward. He may lower the daily dosage from 150 mg to 100 mg - or maybe 50 mg.

I hate to reduce the dosage since Dr E says it appears to be working. But, it has gotten to a point where I can't stand the sores on my face. It's been driving me absolutely nuts. Hopefully, it will still continue to work well at the lower dose.





Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

Tired

The past couple days have been a little rough. I have been quite tired and have slept quite a bit. I'm guessing it is the weaning from the steroids again.

Also, the acne sores from the Tarceva is getting very irritating and sore. It is now covering all of my lower face - cheeks, nose, lips, chin, neck. In addition, the sores have started on my chest.

This is the worst side effect at this time. I can't use any of the normal anti-itch stuff or the typical acne stuff. Those things would only make it worse. So...I wince and put up with it - and I rinse my face with warm water many times. That rinsing will reduce the itch/pain for a short while.

I am still using oxygen throughout the day. Often, I will take off the O2 when I am just sitting. But, I still feel like I need it when I am doing much. I see Dr Einhorn on June to discuss whether I will need to make O2 arrangements for Europe.



Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

weaning from steroids again

So...it is time to start weaning off the steroids once again. My dosage didn't start as high as during radiation (4mg 2x per day). So, the schedule was as drastic. But, the impact/side effects of the steroids were also considerably less at 4mg just once per day.

Last Wednesday, I cut back to 2mg once per day. I started to feel a few effects; but, nothing overly significant. Only minor fatigue, little impact on appetite, a little continued ankle swelling. Then, this Wednesday I cut back to 1mg one per day. Didn't notice a lot on Wednesday. But, it hit me on Thursday. Difficulty waking up Thursday - slow to get going. Finally, got going well past 10am.

Once I got to the office, I was only semi-useful. Though I stayed at the office until almost 4:30, I kept falling asleep in my chair. Probably napped away almost half the afternoon. Finally, when I felt like I was sufficiently awake to drive, I decided I better get going.

Friday morning was quite interesting. I woke up and got ready to head downtown. Meds, shot, shower, dressed, portable tanks filled, lunch packed, etc. Last thing left was to put on shoes. Sat down to put on my shoes - leaned back and that was it. I fell back asleep. Next thing, it was something like 10:30. I decided that it wouldn't make any sense to drive downtown that late if I would like just nap like yesterday. So, I just went back to sleep. Slept most of the afternoon until about 5pm.

Hopefully, I can finish the adjustment over the long weekend.

Travel day - back home

Today was a travel day to return home from the wedding in Philly. Everything went pretty well. We had to walk quite a bit in the Philly airport - enough that I eventually flagged down an electric cart to help with the final leg of the walk. It was quite a while for me to be off oxygen right now - something like 7 hours without O2.

And, it was a long time to go without a chance to wash my face - which is about the only thing that helps relieve the itching and pain of the acne-like sores. At this time, these sores are still the only significant side effect that I have had from the Tarceva (chemo).

Tomorrow was to be back to normal routine. However, there will be an emergency evacuation drill at the office tomorrow - they completely evacuate the building. And, I certainly don't plan to do that. So...I will be going in a little late tomorrow - at least late enough to get there after they finish the drill.

Wedding

Well...the day finally got here. Brett & Arielle got married today. I have described it to some friends as a "hippie wedding in a park" and that's exactly what it was.

We headed to Ridley Creek State Park about noon. Wasn't really too far; but, it sure took us to a very different part of the Philly area. Wooded, green and clearly a state park environment. We found shelter #17 and the kids had most things set up.

Shortly after most people started to arrive, the appetizers, veggies, cheeses, etc were put out. With about 22 people coming to the wedding, setting out the food wasn't terribly difficult.

As the guests arrived, it was clear this would be an eclectic group. Arielle's brother (David), a former professor, a few of Arielle's long-time friends, and an assortment of personalities. Most of the guests were young - Brett & Arielle's age.

Once everyone was there about 2:45, the kids did what is a "Quaker style" wedding. They simply read their vows to each other. Afterward, the guests were invited to do a reading or say whatever. Jill handled "officially welcoming" Arielle into our family.

Then, David, and Julie served as the witnesses - which meant they signed the paperwork that is turned in to officials. There was nobody who officiated over the wedding ceremony.

Once the formalities were finished, the photographers took many of the usual pictures and other food was served. They served a wide variety of sandwiches, salads, etc. Desserts were fab - chocolate cake, strawberry shortcake and tiramisu.

Other than the cold temps, it was a very nice, informal ceremony/celebration. The kids seemed to be very happy - both with how it went and with the fact that it is now over.

So, we're back at the hotel. Everyone is thawing out. And we'll probably just hang around for the evening and prepare for our flights tomorrow.

Oh, I probably should comment that I am doing pretty well. O2 ran a little low after the long day - but didn't really cause any problems. I've been sleeping OK since I have been taking Ambien. I'll wait until I'm back home to see if I can sleep through the night without help.
The Tarceva "acne" is covering most of my lower face and I have a few spots on my upper chest. Itches like all get out - and it's pretty ugly stuff. But, since the Tarceva is working, I'm glad to put up with it. Nothing else significant in terms of side effects.



Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

In Philly for Wedding

Yesterday, we flew to Philly for Brett & Arielle's wedding - which is Sunday. Travel went well. We successfully hooked up with Jill's mom who came separately from Chicago. Got our rental SUV and headed out. Slight glitch finding the Residence Inn - but not too bad.

We decided that Friday would be our day to get Philly steak sandwiches. A friend had recommended Jim's on South St - so...off we went. And, as expected, the sandwiches were delicious. And, it was fun for Jill's mom and Julie to see the uniqueness of South St.

After eating, we drove to the kid's apartment. Met Barkley (dog) and one of Arielle's friends (Julie). Spent time just chatting and relaxing.

Headed back to the hotel. Julie and I decided we needed some pizza - she ordered delivery. She didn't do any meat; but, it was still pretty good.

The hotel suite is quite nice. 2 bedrooms - each with a queen bed and bathroom. Nice sized living room with a sofa bed. We don't plan on cooking; but, the suite includes an apartment sized kitchen - refrig, stove/oven, microwave, etc.

Then, this morning we woke up - or should I say I got woke up - to do a bit of a tourist day. We found the visitors center after parking and immediately got out tickets for the "duck" tours. This is something that Jill and I like to do in any city that has them. Usually get a very nice overview of the keys sites - and, this one was good.

After the tour, everyone was hungry. We headed for the City Tavern. We all had a great meal. Julie and Dee had the turkey pot pie. Jill had turkey/noodle soup and I had prime rib. And dessert was an exceptional piece of chocolate mousse cake - mmmm it as fabulous.

Once done eating, everyone was pooped. We didn't even walk back to the car. I insisted that we get a cab. Not sure I could have made the walk.

Back to the hotel. Jill and Julie are both napping. Dee and I are watching the Food Network.



Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

All good news

Yesterday, I saw Dr Einhorn for a regular follow up. Seems that pretty much all news is good news this time.

Most importantly, the Tarceva is making good progress on my lung cancer. In Dr E's words, there has been considerable clearing in the new xray versus the last which was in April. Very good, very quick response.

Now, I am dealing with what appears to be significant acne all over my face. It is really a Tarceva side effect - not actual acne. If it were to get infected, they would give me an antibiotic; but, it's not infected. And, apparently, the antibiotic he would use has its own side effects and I don't really need for of those. Course of action is simply to wash it multiple times during the day - the warm washing reduces the horrible itching. Even though it looks like acne, I can't use any of the acne treatments since Dr E says they would dry out my skin and just make the sores even worse!! He could reduce the Tarceva dose and the sores would likely reduce; but, I told him "no way". If the Tarceva is working, I can put up with the sores and will do so happily.

A little swelling is back in my feet/ankles - steroids. I'm having a little trouble sleeping - steroids. My somewhat big appetite is back - steroids. Dr E gave me a new tapering schedule to get me back off the steroids once again. I need to get off them so that I can determine how the body is doing without the crutch of the steroids.

Oxygen - looks like I will be on it for a little while - maybe a few more weeks. Dr E says it is not a science. Basically, we watch the pulmonary embolus (PE) to see if it starts to dissolve - which they expect it will. As it dissolves, my need for supplemental O2 should reduce. Dr E says he would be very shocked if I still need to be on O2 in July for the trip.

Lovenox - still giving myself the once per day shots in the belly. Dr E checked with the "blod clot expert on the team" and it looks like I will continue on the lovenox for about 3 months. At that time, they will do a special CT using contract that helps show the clot. They will make a further decision about the lovenox at that time based upon how much of the PE has dissolved. So...3 months with CT to check is better than the original plan of 6 months.

Oh, if I hadn't mentioned previously, the side effects from the radiation treatments are basically gone - except, of course, for the hair loss. And, I'm not really sure whether the hair will come back this time. Some readings have implied that hair loss from radiation is sometimes permanent. Whatever!

So...I guess when I have a Doc appt and walkaway with mostly good news, that qualifies as a very good day!!

Back to work and back to normal

So...late this week I was finally able to get back into the office and things are gradually making their way back to being somewhat normal. I was able to spend about 7-ish hours in the office both Thursday and Friday. Obviously, it was good to get back since I was starting to become pretty stir crazy.

Medically, most of the side effects from the radiation are gone or clearing up. I no longer have the soreness in my throat. I'm not feeling the extreme fatigue - unless that is due to being back on the steroids. Obviously, the hair is history; but, I'm used to that.

I am experiencing pretty extreme acne-like sores on my face and neck. It can be pretty irritating; but, it's not as bad as some of the real debilitating side effects I had earlier. Just gotta be careful. According to Dr E, I can't use typical acne solutions since they will dry out my skin and he says that would make things worse. Apparently, even though it looks like acne, it isn't. It is actually caused by the Tarceva - the new pill chemotherapy that I start April 18. Dr E told me in advance that this would likely be one of the only real side effects.

Also, I have had a little trouble sleeping - I attribute it to being back on the steroids. So...I am just putting up with it. Dr E says that I may be on the oxygen only a few weeks. It would certainly be nice to be off by the time we go to Rome. But...apparently, I will need to continue giving myself the anticoagulant shots (lovenox) for as long as 6 months. Quite an experience.

On a non-medical note, I've had time to contemplate things and I realize just how lucky I was to dodge the bullet of the pulmonary embolism. After reading a bit more, I have come to realize that this causes strokes and other much more serious effects for many people. And, it is something that, literally, could have killed me. Once again, however, I was lucky to have had it caught at a point where they could initiate treatment before something too serious. It is helpful to be good; but, it is much better to be incredibly lucky!!

I went with Jake today to see the new Star Trek movie - absolutely, loved it. And, tomorrow we are going with Connie and Jake for Mom's Day brunch. This time we are going to Sahm's - a place where we have always had good food. Their basic strength is in preparing comfortable food - nothing too fancy here. We're thinking that they should be able to good a really good job of a brunch.

At work, I had a couple days to restart work on my business blog. It is gratifying that Simon has agreed to provide any resources that I need to make it work. And, the one key trade magazine in my portion of the business has offered to carry the blog on their website - that should help the blog to get a good jumpstart. And, very generous of them to offer since they haven't even seen the blog - they made the offer simply based upon my reputation. So...I hope to be able to continue work on it next week.

Massage

Well...while I wait for my second portable to be delivered tomorrow so that I have enough O2 to do a few hours at the office, I decided this would be a good day to go get a massage. Good decision. I emailed Dr Einhorn to make sure that there wasn't any kind of issue with the lovenox (blood thinner/anticoagulant) and he said it would be fine. So, off I went this afternoon. First time I have driven in a few weeks. I figured out how to hang the portable O2 tank on the headrest since it must be kept upright at all times. Strapped in, O2 hooked up and on my nose, ready, set, go. It was a good test for when I give it a go Thursday to get into the office. Went fine. As always, the massage was nice and relaxing - just what I need right now.

So...tomorrow they deliver the second portable tank and that should give me enough O2 to make the drive downtown to the office and for a few hours before I need to head home. I'm getting a little stir-crazy. The blackberry and computer have helped me to stay up on things; but, it's just not the same thing as being there - even if only for a few hours.