Tuesday, October 27, 2009

Dump the oxygen!

I have been pushing to get rid of the oxygen. Haven't used it since Friday night. And, I haven't used it much in the past couple weeks. I have maintained an oxygen saturation level in the 92 to 95 range - which is good. So...I emailed Dr. Einhorn and asked him if I could stop using the oxygen.  His response - "Dump the oxygen!" Tomorrow I will call the oxygen company to arrange for them to pick up the equipment and will cancel the scheduled oxygen for Joliet at Thanksgiving. It is so nice to be rid of the "anchor" of the oxygen tanks!

Saturday, October 24, 2009

time flies

Well...it seems like time just flies by. Another week is gone. No chemo or doc appts this week. I did have long work meetings Tuesday, Wednesday and Thursday this week. The meetings ran until 5:00, 5:30 and later - pretty late for me. So, I treated myself to a long massage on Friday.

Best news this week is that I am making good progress on cutting down the oxygen use. Haven't taken the tank to my office all week - including the days with the long meetings. I did have a tank with me in the car just in case. But, didn't need to use it. I have gone the entire day today without oxygen - including shopping and eating out. I am starting to think I might be able to drop the oxygen before my Thanksgiving goal.

I did have a bit of stomach issue late yesterday. Without details, let's just say that I had extreme pain from what I assume was gas.  'Nuf said. Much better this morning. Didn't really eat much yesterday. So, I assume it was the fried rice that we made at home last night. Other than that, I have been feeling pretty well. My eyes are still watering; but, at least I am not having the crusting and more significant issues. Appetite has been so-so. But, I have been eating more than before and drinking the nutrition drinks. I haven't gained any weight; but, I also haven't lost any more.

Since I am thinking that my weight may be somewhat stable for now, I bought 4 belts today. Now I can keep my pants from falling!! Next, I will order some pants - maybe tonight. Since I get my jeans from Land's End and my dress pants from Land's End and LL Bean, it won't be too difficult. Just need to drop the waist size down 2 inches.

Sunday, October 18, 2009

Weekend in St Louis

Well...we have had a very nice weekend in St Louis with Julie. We drive over on Friday afternoon. Met up with Julie and Michael for a late light dinner at Lion's Choice. We still consider their roast beef sandwich to be the best you can get.

Checked into the Spring Hill Suites - nice little Marriott - all suites. Very convenient location. We pretty much went straight to bed.

Saturday AM we had the hotel free breakfast - nice for me but not a lot of choices for Jill. After killing the morning, Julie called to have lunch (Lion's Choice again) and off to do a little shopping. They both found WigWam warm wool socks. For me, it was good because I am focused on reducing my dependence on portable oxygen - doing pretty well so far. I told the doc that I would like to try to be off the portable oxygen by Thanksgiving.

Then, Julie wanted to take a drive through Lone Elk Park. Used to be a frequent tradition when we lived here. Saw lots of bison and a few elk. Nice drive.

After an afternoon of shopping and driving, we went back to the hotel and took "pass out" naps. Both of us slept very deeply and just woke up in time for dinner with Julie and her friend, Adrienne. Went to Guido's on The Hill. As expected, excellent food. Jill and I were both stuffed. Perhaps the most food I've eaten in weeks. Jill is a bit uncomfortable cuz she also ate lots. But, it was delicious.

Julie suggested brunch tomorrow with Michael and his parents tomorrow. But we've decided that would just be too much and we want to get on the road back home.

All and all, it has been a very nice visit. Julie is preparing to start Vet Tech school in about a week. I think she will really like it and she will end up doing work that she will enjoy - at least I hope so. Her training is something like 16 to 18 weeks.

Oh, and boyfriend, Michael has a purchase contract on a house. Julie took us by to see it nice little "cottage looking" place. Looks nice.

So...long drive back home tomorrow. About 5 hours depending upon how many short naps I will need.

Take care and be well. - JimA

Sent via Blackberry. Please excuse short answers and typos.

Wednesday, October 14, 2009

Interesting news

Blood tests, Dr visit and chemo today. No new xrays until next visit Nov 4. Dr Einhorn said status is good and approved going ahead with chemo today - he needs to approve each chemo infusion based upon my status on that day. I have been doing pretty well the past couple weeks. Sleeping well with the ambien. Eating better and drinking the nutrion drink per orders.

The most interesting news is that Dr E is sending forms and samples from my lung pleurodesis to the NIH (National Intitute of Health) to apply for me to participate in a new very targeted drug trial. Apparently, the drug is targeted for male non-smokers who have a very specific, rare blood "marker". So...I don't know if I qualify until NIH analyzes the samples sent to them. I'm not quite sure what to expect if I qualify. But, Dr E seems to be pretty happy about the possibility.

Also, they didn't give me grief about eating this time because I gained a pound since my last visit - after many visits of losing weight every time. I am currently down about 46-47 lbs since February. Now, I am trying to deal with the fluid in my ears and the issue with my eyes.

My eyes have gotten a little better most days since I started using the ointment. I'm just impatient because I would like it to clear up faster. But, at least they are slowly getting better.

I finally made a bigger deal today about the fluid in my ears. It is getting to be enough that it is an annoyance. No pain and no infection at this time. He quickly told me that I would need to talk to Dr Henderson since it would be caused by the radiation. So...I emailed Dr Henderson. He said to start by trying Sudafed for nasal congestion. If that doesn't help, he will refer me to an ENT and I would probably get tubes in my ears to drain the fluid.

Saturday, October 10, 2009

Saturday - really slept in

I managed to sleep in until just past 11 today. Feels good. But, it takes a while to wake up when I sleep that late. Feeling pretty decent this morning. Just put the ointment on my eyelids and have a little fuzziness. It usually takes an hour or so for the eyes to settle in. Nothing else really new for me. I have chemo on Wednesday - 4th of 6. Jill had a funky night. She thinks it was a dinner she made for herself - some kind of chicken and rice premade dinner. She seems to be feeling a little better this morning.

Monday, October 5, 2009

Yeah Colts and I'm doing fine

Well...can't feel too lousy with the Colts playing so well. That Peyton Manning is something. My eyes continue to gradually get a little better each day. Obviously, the ointment is working. Of course, I would like it to clear up right away; but, a little better each day is better than nothing. Most everything else is about the same. Eating as much as possible and that helps keep my energy level up a little - but, still pretty fatigued.

Saturday, October 3, 2009

eyes getting a little better

The good news is that my eyes are getting a little better. I am using a prescribed ointment (tobradex) as directed by the eye doc. 2x per day I put a small amount of the ointment on my lower eyelid. It is a bit strange to hold the eyelid and rub on the ointment. If I would have had to do this before I ever wore contacts, that would have been difficult. The best thing, though, is that I wake up without my eyes being crusted.

Other than the eyes, I have pretty much become accustomed to the other Alimta side effects. The skin rash/sores are very minor. The fatigue is a nuisance but not a big thing. I have adjust what I do or try to do to fit with my energy level - not really too bad.

Tonight we are going to the Miles for Myeloma (M$M) dinner at IU.  Jill's oncologist/hemotalogist, Dr Rafat Abonour, has been doing this for several years now - maybe four or five. Each year he does a combination run/bike ride to raise research funds for Myeloma and related diseases (which includes amyloidosis which Jill has). As of last year, the donations have totalled over $1 million. If you have an interest, the website is .