the glasses saga continues

I called the eye doc's office on Monday. The woman I talked to didn't seem to know what to do after I explained what had happened. She said that I should bring the glasses by the office when I get a chance. I told her I couldn't do that because I am in Indianapolis. She said, "Well, you can bring them in when you get back from vacation." Ha! I explained to her that I wasn't on vacation. I live in Indy. Then, she didn't know what to do and would talk to "Linda". Linda called Tuesday. She apologized for the lack of communication. Apparently, the frame supply had my frames on backorder and they will be in-stock in a couple weeks. When they are ready, the glasses will be sent to me. Obviously, I was surprised since I had just gotten the other glasses and I asked her what I should do with these. She told me to just keep them as consideration for the inconvenience. Now, I will have to pairs of backup glasses. That's a lot of glasses when you consider I may only need them for maybe six months - or, until I need cataract surgery.

On a different note, all kids and dogs have now returned home. Quiet. No dog toys. No dog jumping on our bed in the morning. It is always nice to see the kids and we would love to see them more often. But, it is also nice to get our house back to ourselves.

This morning I stepped in the shower and was hit rudely with cold water. Our water heater clearly was not working. Jill called the plumber and they sent someone in the early afternoon. Turns out that we didn't need a new hot water heater. I have no idea how long a hot water heater lasts. But, the plumber said that he thinks he put it in and that it was "only" six years old. Apparently, the pilot light had gone out and is supposed to relight itself. Jill says he used a blow torch to light it. I never would have had the nerve to try that - much happier to have him do it. So, hopefully, all is back to normal.

glasses story continues

My bad luck with vision continues. The next chapter of the story is that I rec'd my new glasses in the mail today. Guess what? After breaking the first pair when trying to fit them, this time they aren't the frames that I picked. They aren't bad frames but I will now need to call their office Monday to see what the heck happened. The good thing is that I can see with the glasses. My vision is not as sharp as it used to be a few months ago. But, I can see well enough to pass my next driving test - which may have been a problem before the glasses.

Holidays

The holidays are about over - at least the busy part of them. Brett & Arielle arrived on Tuesday after driving Monday and Tuesday. This was our first opportunity to spend much time with Barkley - their bassett, beagle, lab, and whatever mix. He is pretty energetic and spoiled. He likes lots of attention.

On Thursday night (Xmas eve) we did our traditional evening meal of finger foods. As always, a very fun meal; but, lots of work getting everything ready. Meatballs, shrimp, pigs in a blanket (wrapped wieners), veggie tray.

Julie arrived on Friday. She had kennel duty at school on Thursday and spent the evening with Michael and his parents. Turned out that her area (St Louis) didn't get weather as bad as further north and her drive was uneventful. We had a few minor incidents when Penny (Julie's beagle) and Barkley met for the first time. Things mostly calmed down eventually.

We cooked a prime rib roast for the first time. Turned out very delicious. Didn't realize how easy it is to make really good prime rib. Usual sides - double-baked potatoes, sweet corn (from the summer), asparagus, hot rolls. We usually open presents on Xmas eve; but, waited until Xmas day when Julie got here. Always lots of fun taking turns as we open the presents. I now have a pair of jeans that fits me without being pinched up with a belt.

Now...it's time to just sit back and relax for the next couple days.

Nothing really new

Figure that I better write something so some don't wonder where I am. Still working on getting used to wearing glasses again. 7 or 8 years since I had lazik and have only worn reading glasses since then. A little different wearing glasses most of the time. It sure is nice, however, to see well again. Eyes are still watering and it looks like I am stuck with that - at least, for a while.

Don't really notice much difference since I had tubes put in my ears other than, obviously, I don't feel the contant sensation of fluid in my ears. I can't tell much difference in terms of hearing.

Still having some "stomach" issues. Don't have much appetite; but, I eat because I know I must. About the only meal that doesn't bother me is breakfast - Cheerios every day. Weight has been stable - I think. I've taken Zantac, Tums and ginger - none have helped. This problem came on about the time I started the Alimta. I am hoping maybe it will clear up now that I've have the last chemo. Maybe time will solve this issue.

Huge snow storm on the East Coast this weekend. Some areas may get more than 20". I sure am glad we have only had a little snow so far. Hoping things get cleaned up by the time Brett and Arielle plan to drive to Indy for Xmas. It has been chilly and the cold bothers me much more that in the past. At least I can layer and that mostly works for me. I've lost around 60 lbs - so I can pretty easily wear layers without them fitting tight like they did when I was heavier.

Dad's 80th birthday party

Yesterday, Jill and I went to Bettendorf, IA to attend my dad's 80th birthday party. I think there were maybe 50 people at the party - brothers, sister, an uncle, nieces, and many more - of course, my stepmom who planned and pulled off the entire party. Spent time catching up with a few people that I haven't seen in years. I am very glad we were able to make it.

Glasses

Well...there's good news and funny news about when I picked up my glasses. First, the good news. I can see 20/20. I will admit that I had my doubts. I imagined coming back to Joliet to get the glasses and still not being able to see well. I was wrong. My vision is quite good.

I do need to take off the glasses to read; but, I knew that would be the case. But, I didn't want to pay for bifocals when I might only use the glasses for 6 months.

Now, the funny part - they broke my new frames while trying to fit them to my face. My right ear is much lower than my left and the frames need to be bent to fit my oddity. Well...they broke the frame that holds the lens. Can't be fixed and they ordered a new pair.

In the meantime, they found another set of frames in-stock that fit the lenses. Now, they will send the new glasses to me in Indy - using the broken frames as a guide. And, I can keep the makeshift glasses as a backup. They also gave me a pair of "fitovers" since the temps don't have the magnetic sunglasses of my new frames. The fitovers are a real fashion statement!

But, at least I have glasses to use and I can now see. We drive to Iowa (Quad Cities) tomorrow for my Dad's 80th birthday party - less than 3 hours since we are starting in Joliet. We'll come back to Joliet tomorrow night and head back to Indy Sunday morning - hopefully, early enough to get home to watch the Colts.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

The Cab Ride

Thanks to Marla Parr for sharing this with me.

“The Cab Ride”
I arrived at the address and honked the horn. After waiting a few minutes I walked to the door and knocked. 'Just a minute', answered a frail, elderly voice. I could hear something being dragged across the floor.
After a long pause, the door opened. A small woman in her 90's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940's movie. By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.
'Would you carry my bag out to the car?' she said. I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly toward the curb.
She kept thanking me for my kindness. 'It's nothing', I told her. 'I just try to treat my passengers the way I would want my mother treated'. 'Oh, you're such a good boy', she said. When we got in the cab, she gave me an address and then asked, Could you drive through downtown?'
'It's not the shortest way,' I answered quickly. 'Oh, I don't mind,' she said. 'I'm in no hurry. I'm on my way to a hospice'.
I looked in the rear-view mirror. Her eyes were glistening. 'I don't have any family left, she continued in a soft voice. The doctor says I don't have very long.' I quietly reached over and shut off the meter.
'What route would you like me to take?' I asked. For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl.
Sometimes she'd ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing. As the first hint of sun was creasing the horizon, she suddenly said, 'I'm tired. Let's go now'.
We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair.
'How much do I owe you?' she asked, reaching into her purse.
'Nothing,' I said.
'You have to make a living,' she answered.
'There are other passengers,' I responded.
Almost without thinking, I bent and gave her a hug. She held onto me tightly.
'You gave an old woman a little moment of joy,' she said.

'Thank you'.

I squeezed her hand, and then walked into the dim morning light. Behind me, a door shut. It was the sound of the closing of a life.
I didn't pick up any more passengers on that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk. What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away?
On a quick review, I don't think that I have done anything more important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware- beautifully wrapped in what others may consider a small one.

PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID, BUT THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL.
You won't get any big surprises if you send this to people. But, you might help make the world a little kinder and more compassionate by sending it on, and reminding us that often it is the random acts of kindness that most benefit all of us.
Thank you, my friend...
Life may not be the party we hoped for, but while we are here we might as well dance.

Catch up from after Thanksgiving

Looks like to need to  catch up a little on my blogging. Eye exam on Friday after Thanksgiving went well. Learned that my opthalmologist here in Indy screwed up by leaving out a few things. First, Dr Aras Zlioba says my eyes are both developing cataracts. But, they are not bad enough to do surgery - that may be another 6 months or so. This is a side effect of the brain radiation - one that we knew was likely. Examination indicates there is no cause/effect from the brain lesions. Apparently, my cataract development has been just a little faster than normal. It usually takes something like 1 1/2 years to 2 years for the cataracts to develop. However, it turns out that my vision can be corrected to 20/20. It is as simple as getting glasses - imagine that. I won't be able to use them once I get cataract surgery; but, they will correct my vision until then. I got a call today that the glasses are ready; but, I won't be picking them up until Dec 11 when we will be headed to Joliet anyway.

Then, this past Tuesday, I saw an ENT about my ears - Dr Michael Moore. He inserted tubes in both ears the same day. I had lots of fluid in the left ear - along with quite a bit of hearing loss. Right ear was much better; but, he put in the tube as a preventative anyway - something about negative pressure inside the ear that would likely result in fluid buildup. I go back for the ENT to check on progress in mid-February. Right now, I have been putting in ear drops twice a day to prevent infection - last day today. Need to keep water out of my ears and let the tubes do their job of draining fluid.

Then, on Wednesday, I got my last Alimta infusion. So...I'll be done with chemo for a little while - maybe months. The NIH wants to wait for confirmation of whether my lungs are in remission. Dr E seems to think that the Alimta may have been successful. I will get a chest CTs with and without contrast in mid-Feb to confirm. If I am in remission, then the NIH will wait before putting me on the test chemo - and that's a good thing. No reason to take the new drug to get me into remission if I am already in remission. The last time I was in remission, it lasted 18 months before progressing (Aug, 2007 to Feb, 2009). Dr E has told me that successive remissions are usually shorter than previous remissions - but we'll keep our fingers crossed. If he confirms that I am in remission (for the lungs), then I will get CTs every couple months and go on the NIH test chemo once the lung cancer begins to progress again. Hopefully, that will be quite a while.

Nothing new on the brain lesions. I get my next MRI in mid-Feb - it's gonna be a busy mid-Feb. With the eyes and ears both being side effects of the brain radiation, it seems that I am still not experiencing any symptoms from the actual brain lesions yet. All 13 are pretty small and, as I indicated earlier, the 3 largest lesions have actually reduced in size. Again, we monitor and get occasional MRIs and watch for symptoms. Dr H will figure out a course of action whenever the lesions grow, cause symptoms or when new lesions develop. Until then, no news is good news.

So...I think that catches things up through today.

Thanksgiving and glasses

This week we went to Joliet for Thanksgiving. Jill's sister, Joy, and her husband, Mark, hosted a very large group this year. With a group of 20 or more, this was quite an undertaking. But, it was very nice with loads of great food. Brett & Arielle made it in quite late from Philly - their flight was delayed 4 hours and they landed around 12:30AM Thursday morning. Julie had Wednesday classes. She decided to drive up from St Louis and arrived around 10:30PM. Jill was, of course, anxious about the kids as she is whenever they travel. She was very relieved when they both got to Joliet. In the end, it was a grand holiday and we were very glad to see so many from Jill's family.

Then, on Friday, I had an appointment with Dr Aras Zlioba. I got a complete eye and vision exam. Well...it turns out that both eyes are developing cataracts; but, they are not at the point of doing surgery yet. However, it turns out that my vision can be corrected to 20/20 simply with glasses. So, I ordered the glasses and they will be ready Dec 11. I have an appointment to see Dr Z again in May. At that time, he will check the cataracts to determine if surgery is needed yet.

pre-Thanksgiving

I better write a blog before Thanksgiving since I may not get to write while we are in Joliet. My eyes continue to water/tear and I am anxious to see what the opthalmologist says while we are in Joliet. And, my ears are still filled with fluid. I see the ENT on Tuesday, Dec 1. I called today to confirm my appt and learned that, apparently, the Dr plans to insert the tubes that same day. Hopefully, that will help by draining the fluid. Next, on Wednesday, Dec 2, I have my last Alimta infusion.

We leave for Joliet tomorrow and will be there until Saturday. Both Brett/Arielle and Julie will be coming for Thanksgiving. Brett and Arielle are flying in from Philly Wednesday night and going back on Saturday morning. Julie is coming from St Louis on Thursday morning and, I think, driving back on Friday. Joy and Mark's house will be very full for Thanksgiving. It will be good to see most of Jill's family this week. Should be a very nice Thanksgiving.

Pretty good news

Today, I got a head MRI and saw Dr Henderson. Because of my recent issues with my eyes, he wanted the MRI and wanted to see me.

The MRI results were great. Of the 13 brain lesions, all are stable or smaller. No new legions. The three largest lesion are all significantly smaller than the last MRI several months ago. The largest lesion shrunk by 20%!!

Dr H does not think my eye issues are caused by the brain lesions. It is, however, possible that radiation treatments might be involved. He recommended to wait for the feedback from the opthalmologist that I am seeing next week. Dr H thinks I may be developing cataracts - which is one known side-effect of full brain radiation treatments.

He also thinks something else might be involved to cause the weeping/tearing of both eyes. He doesn't seem to think that the vision issues and the tearing are caused by the same thing. But, he doesn't think it has anything to do with the brain lesions. He says he would rather defer to the opthalmologist.

The fluid is still in my ears - quite a bit. Dr H says that, since this hasn't, cleared up by now, I need to get tubes. He will recommend an ENT at IU to put in the tubes.

So...pretty darn good day.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

More review

I got an email yesterday from my radiation oncologist. With the continuation of my eyes watering and some blurred/double vision, he has decided to do a new MRI and discuss treatment options for the brain metasteses. So...I will get the MRI next Thursday and see Dr Henderson afterward.

I have been a little bit of a pain because I am not willing to just wait for more symptoms related to the brain. I would rather be more aggressive in a treatment approach. We'll see what Dr Henderson says next week.

Ongoing I still have one more Alimta infusion on Dec 2. I see the opthalmologist in Joliet. And I have to get through a pretty busy next few weeks with the holidays, Dad's birthday party and the kids visiting.

Then, they start getting ready to put me on the NIH experimental drug.

Oh boy!


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

Outdoor chores done

Wore myself out a bit yesterday doing outdoor chores - stuff that needed to be done bofore winter. PJ (teenager next door) came over to help with a few things. We moved the snowblower to the garage and tried to get it started - no luck yet. But, we'll get it and PJ will use it to do both our driveway and his own. At least the chores are done and we have time to get it started before snow.  Slept pretty late today and, then, we got milk/groceries before the Colts game.

I have been feeling about the best that I have in quite a while. Pretty decent energy level. Good appetite - I finished Jill's PF Changs meal yesterday. I do still have fluid in my ears and may end up getting tubes to drain the ears.

My eyes are about stable - crustiness is gone but they are still pretty weepy and my vision is blurred and significantly effected. Jill talked to her sister today - Joy has worked for an opthomalogist/eye MD for many years. She is going to try to get me an appointment with the doc when for when we are there for Thanksgiving. Apparently, the ointment I have been using includes steroids and I probably shouldn't still be using it after two weeks - especially if it isn't helping. Dr Henderson had told me that my radiation treatments could cause cataracts - so, I'll have that looked at.

So...we will have a couple weeks before all the holiday stuff starts. We'll head to Joliet for Thanksgiving and the Quad Cities for my Dad's 80th birthday party. Then, the kids will be coming here for Xmas.

Lung Cancer news article

10 percent of lung cancer patients never smoked

By Michael Schug

Posted: November 05, 2009

Becky Augustin developed a cold that lingered through the fall of 2005. She was eventually diagnosed with lung cancer.
“I have never smoked, so I was shocked beyond belief that I had lung cancer,” the Indianapolis resident said. “I had heard that non-smokers could get lung cancer, but I never thought it would happen to me.”
Dr. Nasser Hanna, an associate professor of hematology/oncology at the Indiana University School of Medicine and a physician-researcher with the I.U. Melvin and Bren Simon Cancer Center, said that 10 percent of lung cancer patients are non-smokers. For reasons not totally understood, women who have never smoked are disproportionally affected by lung cancer. Twenty percent of non-smokers diagnosed with lung cancer are women; 7 percent of men with lung cancer are non-smokers.
In the United States, 219,440 people will be diagnosed with lung cancer this year and 159,390 will die from the disease in 2009, according to the National Cancer Institute.
Overall, Hanna said lung cancer will kill more people than colorectal, breast, and prostate cancer – the second-, third-, and fourth-leading cancer killers – combined.
How can a non-smoker develop lung cancer?
Exposure to second-hand smoke and such long-term occupational risks as working in factories and coal mines put non-smokers at increased risk.
Researchers also have learned that a genetic mutation can leave some people vulnerable to lung cancer even if they never smoked. The mutation occurs in the epidermal factor receptor gene, which signals cancerous cells to divide and grow, Dr. Hanna explained. Other gene fusions also have been discovered in people who never smoked.
What are the signs and symptoms of lung cancer?
Unfortunately, the warning signs don’t usually appear during the early stages of the disease. “A person’s first sign might be a symptom of advanced disease,” Hanna said.
According to Hanna, the following are some symptoms of lung cancer:
• A persistent cough;
• Coughing up blood;
• Shortness of breath, and;
• Hoarse voice.
Symptoms of advanced disease may include:
• A new area of pain;
• Unintended weight loss;
• Fatigue, and;
• Diminished appetite.
How is lung cancer discovered?
Unfortunately, current screenings – a chest X-ray, for example – do not find lung cancer early enough to improve a person’s chance for a cure. Until an effective screening becomes the standard that is widely accepted, people – especially smokers and former smokers – are encouraged to talk with their doctors about their risks and to discuss their screening options.
Lung cancer clinical trials
To learn about lung cancer clinical trials at the IU Simon Cancer Center, visit www.cancer.iu.edu/trials.

Michael Schug is Communications Specialist for Indiana University Melvin and Bren Simon Cancer Center.

Hurray

Well...so now a mutation is a good thing. I qualify for the new drug through the NIH trials. IU's internal review board is reviewing my acceptance next.

That means that Dr Einhorn will do a new CT with contrast to have new benchmarks for measurement - probably late Dec or early Jan. Should start the new drug in Jan or Feb. This is a fabulous thing because the drug is so highly targeted to a very small group - only 4% of the male, non-smokers have the blood marker that qualifies for the drug. I will be on the drug - not a test placebo. Only 40 men have used the drug so far - some for a couple years with success. Dr Einhorn says they have had very good success with this type of highly targeted chemo.

So, I finish the Alimta - one more infusion Dec 2. In the middle of an infusion today. My lung Xrays are stable - same as 6 weeks ago. Bloodwork is fine.

I am off oxygen and I am feeling pretty good. Still some irritation from fluid in my ears. Will probably need tubes.

And, my eyes are still weeping. Jill thinks I'm just impatient and expect the ointment to work too fast. We'll see. Dr Einhorn says to give it another couple weeks.

Dr Einhorn now says that he is OK with where my weight seems to have stabilized. As long as my energy level is OK, he thinks my current weight is probably healthy.

5th Alimta chemo

Keep your fingers crossed for good news. Tomorrow i get xrays, blood tests, etc and I meet with Dr E. If all is ok, I get a chemo/Alimta infusion around 1:30.  I will go home to relax after the infusion.  About 4 to 5 hours at the IUSCC (Indiana Univ Simon Cancer Center). 

I expect a little grief for losing about 2 or 3 lbs.  I am not totally happy with the progress of my eyes.  They are better and Jill seems to think I might be a little impatient.  I might get back into the opthamologist soon if possible.  I'd like to see if he think I am ontrack. 

So lots of tests and exams tomorrow. Hope all goes well.

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!

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.

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.

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 - 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.

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.

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 .

JimA eyes

Even though I should probably go to the ofc, I think I won't bother today. Just finished at the eye doc. Don't think I will drive downtown for just a couple hours.

Happily, no developing cataracts. Apparently, I have lost quite a few eye lashes and this can contribute to the eyes not being able to lubricate properly. It is effecting my vision. He doesn't currently see any damage to worry about - just treat the irritation and symptoms. But, he doesn't think glasses are warranted.

So...I have an Rx to fill for a cream that I am to put on the lower eyelid 2x per day. Tobradex. And he gave me a couple types of drops to try.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

OK Tuesday

Well...today was Tuesday - about one week after my chemo. Not a bad day. Slept in a little (normal nowadays) and got into the office late morning. My eyes are still bothering me - though not quite as bad as initially. I see my eye doc tomorrow to see what he says. Have been eating a lot. Jill has cooked a few things - jambalaya, a chicken crockpot dish and tortellinis with her homemade sauce. And, Ive been drinking the nutrition drinks. This AM, I was up 3 lbs over last Wednesday.

pretty good day

Didn't really sleep well last night - 3rd day on steroids. But, after sleeping a little late, I had a pretty good day. Got to the office a little later than usual; but, nobody ever seems to care.  Did a little work "stuff" and read the news. Nice lunch with the VPs and hung around for a while longer dealing with the usual little things. Got home a little early so Jill and I could get out and get some groceries before I wore out. Turns out that I lasted OK. We've been eating at home quite a bit; so...we spent more than usual on food. Feel pretty good right now. Have been addiing a nutrition drink per Dr E to kick up the calories. I'm sure that chunky soups are probably not the best thing in the world; but, I have found a few that I like and we'll see how that works out. Certainly easy to make. They are way too much sodium for Jill - she's been having small sandwiches - which gives her her "6 bites" pretty well. And, she snacks once or twice as we watch TV. Looks like I will need to make an appt to see my opthomalogist about my eyes. I have been stalling and hoping they would clear up. They seem to not be getting lots better; so...I better get them examined.

Xrays, doc visit and 3rd chemo

Today was a medical day. First, I had a chest xray & blood tests. Then I saw Dr Einhorn. Finally, I had my 3rd Alimta infusion. All went well and actually stayed pretty much on time. My xray was good. Dr E says that there was some clearing in the upper lobe of my right lung. Since he sees progress, we will continue through the max infusions for this chemo - three more every three weeks for total of six. Dr E examined my eyes and doesn't know what it is. He hasn't seen it as a chemo side effect. I'm gonna make an appt tomorrow with my opthomalogist. Dr E isn't happy that I continue to lose weight - I'm down around 50 lbs since Feb. He said I am simply not eating enough and wants me to add 3 nutrition drinks per day. Luckily, I actually like them; so, that shouldn't be a problem. I drink that Kroger brand of Ensure - tastes the same and is much cheaper.

After all the doc stuff, I went into the office for a short while. Had an important memo/email that I had to get out. My VPs had drafted the memo.  But, I don't like to send out anything under my name without proofreading and editing.  Also, Melissa got me an omelet and it was waiting for me when I got to the office. Cindy and Melissa sure do take good care of me!!

Tonight, Dancing with the Stars results show!

Junk blog

Once again, someone was able to post a nonsense, junk blog on my cancer blog. Let me remind you that it is probably a junk blog if it isn't about my cancer/health, my family, our travel or such topics. I absolutely will not post anything related to politics or controversial topics.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

IndyStar article about Melvin's funeral

Below is the IndyStar article about Melvin's funeral.

Powerful friends bid goodbye to Simon
By Will Higgins
Posted: September 18, 2009

12:50 -- 'My Way' ends funeral service

Two thousand mourners packed the synagogue for the hour-long service, after which shopping mall developer Melvin Simon's casket was wheeled out with Sinatra's "My Way" playing again.

Simon the founder of Indianapolis-based Simon Property Group died Wednesday. He was 82.

Simon became one of the most powerful businessmen in Indianapolis as his firm grew to dominate the shopping mall industry. He was a co-owner of the Indiana Pacers.

President Clinton was among the speakers at Congregation Beth-El Zedeck, 600 W. 70th St.

Clinton called Simon, a good friend, "one of the most remarkable people I've met."

"He made a lot of money," Clinton said, "but he didn't sit on it. He shared it."

Clinton recalled Simon's playful and competitive sides as well, telling a story of how he was playing golf on Simon's home course one day, and the host took great pleasure when Clinton started struggling. Simon went so far as to graciously offer his guest some new clubs, Clinton recounted to smiles.

Clinton's vice president, Al Gore, also attended the funeral.

Simon was an important contributor to Democratic candidates.

Larry Bird, who worked for Simon as president of the Indiana Pacers, took his place in the synagogue. Also joining the mourners were retired Pacers All-Star Reggie Miller and Sidney Taurel, former chairman of Eli Lilly and Co.

Indianapolis Mayor Greg Ballard, his wife Winnie; Sen. Evan Bayh, his wife Susan; and NBA commissioner David Stern also attended.

Before the service, Melvin Simon’s brother and business partner, Herb Simon, greeted mourners who arrived early outside in the sunshine.
EARLIER -- Big names expected at Simon's funeral

Celebrities, sports figures and government leaders are expected to attend today's funeral for Mel Simon.

Former Vice President Al Gore and NBA Commissioner David Stern are among the guests expected at the funeral for Simon, the shopping mall developer and co-owner of the Indiana Pacers.

Simon, who died Wednesday after a battle with pancreatic cancer, was 82.

Services will begin at 11 a.m. at Congregation Beth-El Zedeck, 600 W. 70th St. The funeral will be followed by a private interment.

Others expected to attend are Pacers President Larry Bird; former players Quinn Buckner, Mel Daniels and Reggie Miller; current player Danny Granger; U.S. Sen. Evan Bayh; Gov. Mitch Daniels; Mayor Greg Ballard; and former Mayor Bart Peterson, according to a Simon spokesman.

Memorial contributions may be made to the St. Vincent Foundation, 8402 Harcourt Road, Suite 210, Indianapolis, IN 46260, for the Joshua Max Simon Primary Care Center.

Melvin's funeral

Went to Melvin Simon's funeral today. More than 2000 attended. First time I've been to a Jewish funeral. Was primarily a memorial including numerous talks by family and friends. Bill Clinton spoke very eloquently about Melvin and Bren (wife). I liked how each speaker included at least one humorous anecdote about Melvin - he would have enjoyed that.

Other attendees included Al Gore, Evan Bayh, Reggie Miller (and about half-dozen or more other current or former Pacers), David Stern (commissioner of the NBA) and many others I recognized by sight but not by name. I'm sure loads of state/local Democratic politicians were there; but, I don't know them.

I'm going to skip the memorial open houses at Melvin/Bren's home this afternoon and tomorrow and the memorial service at the synagogue (I think tomorrow). I'm not much for mingling - which is what I expect will be the case at the open houses.

All in all, it was a wonderful celebration for Melvin.


Take care and be well. - JimA


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Been a while

Apparently, it has been a while since I did an update. I know because so many people have emailed asking how I am doing since I haven't blogged for a while.

Before I write about my health, I need to mention my friend and business mentor, Melvin Simon. Melvin passed away today and this is a very sad day for me. He has been a big influence on me and our family during the past 15 years. I was privileged to spend a good amount of personal time with Melvin.

The Indy Star has quite a few articles about Melvin today. He was a huge personality and his influence on Indianapolis will be felt for many years. For me, I will always remember the private times and travels with Melvin. If you don't know much about him, read the articles today at IndyStar.com. His life, business success and good deeds are worth learning.

OK...as for me, I am doing so-so. Mostly, I am experiencing significant fatigue. This is an expected side-effect of my latest chemo - Alimta. However, I am never quite ready for this type of fatigue - even though I've had it several times.
I am sleeping a lot - 10+ hours every day. So...I haven't blogged because I've been sleeping. I can be watching TV and just fall asleep for a hour or more.

With the added muscle fatigue, I can't do much of anything physical without feeling wiped out. Dr Einhorn says I need to just run the course and get through it.

That means that I haven't been to the office for two days. It wouldn't be safe for me to drive right now. My blood oxygen saturation level has been good at 95 to 98. So, I am not having an issue with oxygen intake. I'm taking it one day at a time for now.

I've had two infusions so far and am scheduled for another next Wednesday. I will get around six to eight total infusions. So...I guess I better get used to this.



Take care and be well. - JimA


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Labor Day

Tomorrow is Labor Day Monday. Another day to pretty much sit around and relax. Haven't done much this weekend and I don't expect tomorrow to be much different.

Eyes are a little more irritating than they had been for a few days. But, I'll just keep pampering them to see what happens. Skins rash not much of a factor - some sores; but, not bothering me much either during the day or at night.

Muscles are feeling a little fatigued - particularly my legs. Right side (surgery side) has been pretty stiff the past few days. Not really what I would call pain. But, the stiffness sure can be uncomfortable.

Oxygen saturation level is maintaining very well at a 1.5 setting. But, fatigue is tough on me even when activity doesn't take my O2 level down. While I can be fatigued from activity, my oxygen sat level is still over 95 - sometimes 97-98.

Guess I'll still just keep getting lots of sleep, eating and relaxing as much as possible.

PS - For anyone who saw the posting on my Blog titled "Bush", I want to let you know that I did not post that entry. I haven't figured out how it showed up; but, I have deleted it everywhere I have found it.


Take care and be well. - JimA


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Labor Day weekend begins

So far, so good a few days after Alimta infusion Wednesday. I have pushed to eat a little more - picked up some Dove Bars. And, as Dr Einhorn suggested, I have started taking ambien every night. So...my weight loss is holding steady and I'm getting more sleep.

Today starts the beginning of the Labor Day weekend. Probably noting special. White Sox game on Fox tomorrow afternoon. Other than that, will probably just sit around and try to relax.

The rash is pretty stable and doesn't really bother me much. The itchy eyes have let up a little. I think, with the increase in food and good sleep, the fatigue is letting up a bit.

My recent new toy, a pulse oximeter, has indicated that I am running pretty well on blood oxygen saturation. Most times I have checked and have been over 96 - with over 93 being the target. I go down a little if I take off the oxygen and exert a little. But, it shows that I am doing very well at the 1.5 setting versus the previous 3 to 4. That should mean that I can reduce the setting a little more or even go without the oxygen occasionally.

2nd Alimta

Today was my second Alimta infusion. First was blood work and an appt with Dr Einhorn. Happily, my hemoglobin and white blood cell count were OK. Lowering white blood count is one possible side effect of the chemo. Dr E said mine was normal.

Now...the hemoglobin was a bit different - he said it was within "my normal range". Apparently, normal for men is 14 to 16 according to a google search. My normal seems to run 9 to 11. Don't ask me to explain that. In any case, the counts were good enough for him to approve the chemo infusion for today.

I also discussed my other symptoms. Rash is considered slight and actually doesn't bother me anymore at night as long as I take ambien. Dr E said I should hesitate to take the ambien every night since a good night sleep is very important for me.

The itchy eyes seemed to stump him. But, he said that even though this is not a normal Alimta side effect, I have almost always had odd side effects. Definitely doesn't think it is pink eye. Should just keep using lubricant drops and clean cotton balls to wipe the eyes.

He made a minor comment about continuing to lose weight. He wasn't too stern since my blood counts were acceptable. I am now down around 44 lbs since February. Gonna be time to get some new pants and belts soon.


Take care and be well. - JimA


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been a while

Well...it has been a few days since I have posted. That's because there has been pretty much nothing new. I have slept pretty well over the last few days - ambien assisted. I have slept so well this weekend that I am going to need to focus on getting up for work tomorrow. I have been pretty fatigued; but, the extra sleep over the past few days has helped.

Various side effects/symptoms are still around but not unbearable. I still have some rash on my upper chest and shoulders. It itches; but, not enough to be a big bother. I do have some irritation in my eyes - constant watering, crusting up when I go to sleep (I need to use my fingers to pull them apart), kinda itchy. I've been using some OTC eyedrops. I'll need to talk to Dr E when I see him Wednesday.

My side is still a little stiff but not really painful. The incisions are now completely healed. My discharge papers indicated that I could continue to have some pain for several months after the surgery - it has been about a month now. I still need to be careful about trying to lift too much with my right hand. If I need to lift to shoulder level, about a gallon of milk is all I can handle.

I feel like I am eating reasonably well. But, I still continue to lose a little weight. Back in February, I was around 260+ and had been for quite a while. This morning, I am 216. I am down to the last notch on some of my belts. Without the health issues, that would be great. But, I am not supposed to be losing weight. I guess I need to buy a bunch of Dove Bars!!

I get my second infusion of Alimta on Wednesday. Beforehand, I will talk with Dr E about my various side effects/symptoms to be sure there is nothing he thinks I need to worry about.

Sleepy

Well...I have been quite sleepy the last few days. Last night I slept around 10 hours or so. And, was still very tired all day. Took about a 90 minute nap when I got home from work.

I suspect that this may be fatigue from the new chemo. Side effects were supposed to be rash (got it), nausea (don't have it), leukopenia or shortage of white blood cells (don't know) and fatigue (might have it).

I have been trying to eat as much as possible. But, I'm still down a pound so far this week. I guess I may need to get some Dove Bars!!



Take care and be well. - JimA


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Blah

I hesitate to bother writing about this weekend. Pretty much not much interesting.

We started Saturday going to the Farmers Market. Got our usual stuff. But...it was really hard to get up early this week. I sure could have used a lot more sleep. Later, we ran errands. By the time we were done, I was totally pooped out.

We spent the evening watching the White Sox - they won. I think I dozed off a couple times.

Both Friday and Saturday were not good nights for me sleeping. I think the rash/skin itching is my main problem. Last night I woke up three times and put anti-itch cream wherever I could. It helped me get back to sleep. But, I woke back up all itchy in about an hour or two. That doesn't make for very good sleep. I've already taken an ambien and hope it will help me to sleep much better tonight.


Take care and be well. - JimA


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Massage

Today I made it back to massa-a-a-a-age. Great. I had planned on next week until they told me that Chelsea had a opening this afternoon. So, I grabbed it.

I had been a little apprehensive about right side (surgery side) even though Dr Birdas had said it would be OK. As it turns out, it really felt good. As she massaged the right side of my back, I could feel the muscles loosen up.

I had 3 massages accumulated since my annual membership adds one each month. It had been a while what with the trip and med problems. So, I booked another for next Thursday. I'll save the final one for later.

I hadn't slept well last night. When I got home a little early, I decided it would be a good time for a nap - about a 90 minute nap. I woke up to the fabulous aroma of her mom's pepper steak. It was delicious. So...Jill cooked two nights in a row - stuffed peppers and pepper steak.

Now, I have leftovers for work. I got going so late today and didn't have time to assemble a lunch. I don't like the Monday and Tuesday soups at the restaurant downstairs at the office; so, these leftovers should hit the spot.

Hopefully tonight we'll figure out some kind of anti-itch cream so I can sleep better.


Take care and be well. - JimA


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Itchy

Well...tonight the itchy skin kicked in. I've been just putting up with it because it was minor; but, tonight I had to use the halobetasol propionate cream prescribed by Dr Forkin a few weeks when I had sores on my fingertips. I'm not sure what that chemical is; but, I hope it relieves the itching.

Most of the rash is on my upper chest. But...it is also on my neck and head behind my ears. This was one of the potential side effects of the Alimta. And...of course...I get any skin-related side effect. Hopefully, the cream will help and I can get back to sleep.

I got Dr Birdas' clearance to resume getting massage. So, I'll start next week.



Take care and be well. - JimA


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lung surgery follow up

Today I met with Dr Birdas to get feedback on my pleurodesis (surgery on my right chest). Very happily, it seems that he feels that everything went very well and that I am healing as expected. The pain that I am having on the right side is what he would expect - and, it might last a little while longer. The two incisions are healing very well.

Good news - he says that there is no problem with me going back to getting massages. Obviously, need to tell them about the surgery and the usual precautions. So...probably tomorrow...I will call and make an appointment.

He said it would also be OK if I want to start cutting back on the oxygen. But, he wants me to have a portable oxygen saturation device. He had suggested a nurse come to the house every few days to measure. But, I suggested that it might make more sense for me to just buy a portable O2 saturation device since I can get one for around $70. Apparently, he thought they were two to three times that cost.

So...today was pretty much good news.

offer of help

Today, I exchanged a few emails with someone who has a co-worker who was just diagnosed with brain cancer and who started chemo and radiation today. I was able to offer suggestions re: how she could help her friend - listening, offer transportation/companionship during treatments, prepared dinners for her friend and husband, etc. Reading her emails, I became aware that my personal experiences could be applied to another situation - like the person's co-worker. This validates the fact that a medical website has asked to publish my personal blog. It certainly does provide the circumstances where others are able to use my experiences to figure out their challenges.

Today, my normal skin reaction appeared. I almost always have a skin reaction of some kind. My upper chest, left neck, chin and some forehead have developed a bit of raised rash. So far, I have used the cream from Dr Forkin and it seems to help. Tonight, I used another moisture cream to see if it helps. We'll see.

Nothing else significant today. Tomorrow, I get a chest xray and see Dr Birdas - the surgeon who did my pleurodesis. Hopefully, he will tell me that all is progressing as expected. Even though I continue to have pain in my right side, that is actually listed in my checkout papers as an expected thing for a couple months.

blah

Well...not much interesting today. Woke up slow and got into the office a little later than normal. Spent the morning reading news. Had a little pain in my right side and took a pain med after lunch. That's about it. Maybe something more interesting to write about tomorrow.

Melancholy

Feeling a bit of melancholy today. I learned yesterday that Ms Barbara Croissant died recently. Ms Croissant was a big influence on me - even though I haven't seen or heard about her for many years.

She was one of my Language Arts teachers at Joliet East HS. And, as the sponsor for the It's Academic competitive trivia team, it is safe to say that she started my strong interest in trivia - an interest that continues today. I never made the team for a televised competition. But, I did accompany them once to the studio as an alternate. It was lots of fun.

Along with a couple other teachers, it would be accurate to blame Ms Croissant for most of my interests in literature and, of course, writing. I remember her well for often pushing and challenging me to keep doing even better.
She will be missed and long remembered by many.

Now, re my health, I am having minor problems today. Nothing too serious. I took an ambien last night and did sleep OK. But, today I am having quite a bit of pain in my left heel. Don't know what that is all about. Had similar pain when I was taking the Tarceva - so maybe it is chemo-related.

I also had an rough time at Sams right after lunch. But, I think that was caused by huge temperature swings. 92 outside - freezing in O'Charleys (had to get sweat shirts for both of us) - back out to 92 - into Sams which was warm. I didn't get far before telling Jill I would meet her back at the car. Kicked on the AC in the car and felt mostly better after a few minutes.

Now that we're back home, I am just relaxing while I do a little laundry. Should be a non-eventful evening.

While doing laundry, I am experiencing pain in my right side. It has become significant enough that I just took a couple vicodin. Hopefully, that will ease things and I will be a little better.


Take care and be well. - JimA


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Slight Ugh

Woke up this morning feeling kinda Ugh! Stayed up late to watch the White Sox - they pulled it out with a HR in the 10th. Only slept so-so. Definitely going to take an ambien tonight. Got up early to get to the Farmer's Market.

To treat myself, I got Doyle blackberries (the absolute best), blueberries and a few peaches. First, had the fruit with my Cheerios. Then, I decided I wanted more fruit - it was really good. We had some heavy cream in the frig - so...more fruit in a bowl covered with heavy cream. Mmmm. I'm a happy boy!!

Today might definitely be a nap day. But, we'll see what the day brings. I have a little chest pain. But, I've been trying to avoid the vicodin. I'll take it if I must. If I take the vicodin, Jill must doing the driving. But, I don't like using pain meds unless I really need to. I won't drive if I've taken the vicodin within a few hours. Not safe.

I'm feeling good about work right now. I made it in four days last week. Only day I missed was the Dr E and chemo Wednesday. I have been making good progress on my new business blog. http://growyourlocalretailbusiness.blogspot.com/ Yesterday, I completed an OK write up for a cart concept. I'm sure it'll get better as I write more. If I am up to it, I'm going to try to do three or more next week.

No new side effects yet from the new chemo - Alimta. Still some residual fluid in my coughs. Seems normal but I will ask the thorasic surgeon when I see him Wednesday.


Take care and be well. - JimA


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No sleep

Well...here I am back on the steroids and I can't sleep. I have been up since about 1:30am and it is now 3:48am. So, I slept about 90 minutes.

I tried playing a little solitaire - no help. So...I decided to move to the LazyBoy downstairs. At least I won't bother Jill down here. I guess I was wrong about needing an ambien.

I figured I wouldn't be taking enough of the dex to bother my sleep - wrong. I'm still going to set an alarm and try my best to get into work by 9:30-ish. We'll see what happens.

Still haven't noticed anything else from the Alimta/chemo.


Take care and be well. - JimA


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1st day after Alimta

First of all, I am back once again on dexamethasone - the steroid I have been on several times. At least this time I just take 2 the day before my infusion and 2 the day after the infusion. I will get an IV dose on the day of my chemo. Hopefully, I won't have lots of the usual steroid side effects that I have had before. Apparently, the dex is to reduce skin rash and other possible side effects.

I also get an IV of anti-nausea med while I get the chemo. Not sure if I need it. Better safe than sorry.

Now, the Alimta which is what they call a folate antimetabolite. This is another targeted chemo that stops production of 3 enzymes needed to feed the cancer cells. Dr Einhorn feels that I have had positive response from other treatments and it is worth trying this chemo. I will get 4 or 6 infusions spread out 3 weeks apart.

I need to start a multivitamin to get enough folic acid. That's right - I need to start since I have never taken a multivitamin regularly. During each infusion, I will receive a vitamin B12 shot.

Possible side effects include nausea, skin rash, leukopenia (shortage of white blood cells), and fatigue. Let's hope my body doesn't invent new side effects.

So far, I can't say that I really have felt much other than being a little tired yesterday afternoon. I fell asleep right after we got home about 4:30pm and slept until 7pm.

So...day 2 tomorrow.


Take care and be well. - JimA


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1st Alimta

Saw Dr Einhorn today and he started me on a new chemo - Alimta. This one is supposed to have very minimal side effects - we'll see!! Based on my history with chemos and such meds, I pretty much get significant versions of just about any side effect that is possible.

Once we got home about 4:30-ish, I sat back in my LazyBoy to watch TV. I fell asleep - really sound sleep. Didn't wake up until just after 7pm. Imagine my surprise.

After dinner, Jill and I took a walk. Went about twice as far as my previous longest walk. Not quite sure about the actual distance. But, I know that it wore me out.

I haven't taken any pain meds (vicodin) yet today. I need to decide whether to take the vicodin or an ambien to help me sleep. In any case, I hope to get a good night sleep even though I took a pretty long nap. Plan to go into the office for a full day tomorrow.

cruise medical issues

This experience is very similar to what happened to our tablemates on a Caribbean cruise last February. Very important to consider insurance issues - particularly if you have any known health issues.

Titanic-sized medical bill surprises couple Chest pains land cruiser in ship's infirmary — and with a bill for $1,200 By Anita Dunham-Potter Travel columnist updated 2:51 p.m. ET, Mon., Aug 10, 2009 Susan and Larry Smith were looking forward to their first-ever Cunard cruise across the Atlantic onboard the fabulous Queen Mary 2. But the fun stopped for the New York City couple the moment Larry had chest pains along with gastrointestinal malaise. The Smiths immediately sought treatment at the ship's infirmary, where the ship's doctor ran an EKG and some tests. Fortunately Larry's heart checked out okay, but he was dehydrated and was given intravenous fluids and was kept in the infirmary for an hour of observation. Larry's tests ruled out any infection, but the doctor couldn't figure out why Larry had become so dehydrated. Therefore, no definitive diagnosis was reached. The next morning Larry felt much better and the cruise continued. A few days after the visit to the infirmary, the Smiths got another unpleasant surprise: a bill for medical services totaling $1,200. The amount was immediately charged to their shipboard account. The Smiths were shocked. "It didn't seem like a lot of treatment for $1,200. It was as much as my cruise fare," said Susan Smith. Even worse the couple foolishly believed that their health insurance would be accepted onboard the ship. It wasn't. Fortunately they did have travel insurance (purchased through the cruise line) that covered medical issues. Insurance doesn't travel well What many people don't realize is that all cruise ships of foreign registry are considered to be entities operating outside the United States. And, as the Smiths discovered, domestic medical insurance coverage doesn't travel the same way aboard ship as it does within the United States. Sometimes, coverage doesn't extend to foreign travel at all; other times it just works differently. For example, co-payments may be higher than usual or your reimbursement may be limited. Even with complete medical coverage, you can't just hand the cruise line your insurance card. You will usually have to pay your treatment costs up front and file for reimbursement after you return home. That's what the Smiths did. Their insurer accepted the claim but explained it could take up to three months to receive reimbursement. The Smiths were relieved to be covered at all. Could the Smiths have avoided the $1,200 out-of-pocket expense? Maybe. If they had purchased third-party travel insurance, they could have received upfront financial assistance and they might have gotten their money back more quickly. Third-party insurers usually provide primary coverage, i.e., the insurance company pays the traveler directly for any medical claim. Most cruise lines also sell insurance policies, but these usually provide secondary coverage, which means that you must file your claims through your regular medical insurance carrier, then seek reimbursement from the cruise line's insurance company. Cover the gaps Medicare beneficiaries should always purchase travel insurance when they cruise, because they do not have Medicare coverage outside the country. Another very big gap is medical evacuation and transportation services, which are seldom covered by medical insurance policies. According to Medjet Assist, an Alabama-based evacuation operation, domestic air medical evacuation services average $10,000 to $20,000, while international transports can exceed $75,000. If you travel more than once a year, consider buying an annual policy; both MedjetAssist and Travel Guard offer this kind of policy, which can be purchased for as little as $185 a year. Cruising is exciting, but it can turn into more of an adventure than you planned if you discover that you aren't covered for the unexpected. So check your insurance policies and fill in the gaps with supplemental coverage.

http://jimallen-lungcancerhappens.blogspot.com/



James H. Allen

Happy Anniversary

Well...today is our 35th wedding anniversary. Who woulda thought we would both make it. Our goal now is to make it to 36. We don't exactly have "long term" goals anymore.

Happy Anniversary to us!!!



Take care and be well. - JimA


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Saturday

Uneventful Saturday. Got up to go to the Carmel Farmers Market. Bought our usual - sweet corn, cupcakes for Jill, blackberries for me.

Spent the rest of the day just relaxing. Gotta do that sometimes. Dinner at Famous Daves and we'll spend the night watching the White Sox.

Nothing significant health wise. I have some pain in the side and I am taking the pain meds to help with it.


Take care and be well. - JimA


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Back to the office

Not a particularly eventful day. Paula left early in the morning to drive home. Shortly after, I left for the office.

I was pretty tired today. Seems like if often forget to take an ambien early enough and I don't want to take it too late since it typically knocks me out 8 to 9 hours. So...didn't take one. The result, I woke up several times during the night - meaning a so-so sleep.

But, I made it in and just did what I could to stay awake. At the office, nothing unusual. Talk about some performance issues. Interviewed a candidate at lunch. Got updates on a couple items. That's about it.

So, the day was simply pretty normal.


Take care and be well. - JimA


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Thusday 8/6

Today started with me waking at about 6:30. But, I knew I wasn't going into the office because I decided to stay home to spend time with my sister, Paula, who came to visit for a few days. So...I went back to sleep for a little while.

Once we got going, I took Jill and Paula to a Mystery Book Store in our area. Then, we did a little shopping at a decor accent & cooking store. Great gift shop and I like their cooking access dept.

We went for lunch at Logan's Roadhouse. Jill really likes their burgers and I got a great sausage gumbo - even ordered an extra take-home bowl for this weekend.

We plan on stir fry for tonight - I love to stir fry. We needed to pick up a few things - sauce and chicken - to add to the stuff we already had. We just finished cutting up everything and I will start up the stir fry in a little while.

Son of a gun - I make good stir fry. Jill helped with some slicing - she cut up the chicken cuz I don't really like doing that. As usual, we could have fed an army. There were three of us. But...it will be great leftovers.

Now, we'll sit back to relax and watch some great mindless TV. Whatever others say, I like certain mindless TV shows. Burn Notice, Bones, Poker (how mindless can you get?), The Closer. So...now you know what happens when my mind wonders.


Take care and be well. - JimA


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Wednesday

Last night I took an ambien for the first time in a few weeks. Didn't take any vicodin. I haven't been sleeping through the night for a few nights. Well...I did sleep through the night last night. In fact, I had difficulty waking up. I had set the alarm for 7:30 but didn't end up dragging out of bed until 8:30. I called Cindy to let her know I would be a little later than the last couple days.

Once I bumped around (literally) for a little while, I managed to shower and head to the office. Having caught up on most other things, I got started on my business blog. I made a couple changes to the site - updated the disclaimer paragraph. And, I did a short blog about starting a small business. Next, I will get started on selecting concepts to highlight and will begin writing the blog entries.

But, that will probably start on Friday. My sister, Paula, came to visit and I think that I will plan to spend much of tomorrow with her. Lots to catch up on.



Take care and be well. - JimA


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Breathing

Let me say that breathing is definitely NOT over-rated. Neither is symptom relief.

Since having the talc pleurodesis about 11 days ago, things have really taken a positive turn for me. With something like 1 1/2 gallons of fluid drained from my right lung (the one with the adenocarcenoma), I am feeling so much better. Sure, I still have some dull pain in my side/back. And, I am still coughing to clear congestion.

But, I can breath. My portable oxygen level is dialed down to 1.5 versus the previous 3 to 4 just to feel like I was getting enough oxygen. I am now able to get back into the office for a full day. I have more appetite. It is a real pleasure.

So...there is obviously something good to be said for symptom relief. Even though the surgery didn't do anything in terms treating my lung cancer, it was a huge benefit in terms of how I feel.



Take care and be well. - JimA


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Back to work

Well...I made it back into the ofc today and handled almost a full day. I left around 4pm. When I woke up, I decided that, even though I had a little pain, I wouldn't take any pain meds until I got to the ofc. No sense driving under the influence. I got in about 9am and felt fine - even better after a couple pain meds.

Spent much of the day catching up on a few things and updating people on my status. It can get to be a little repetitive; but, I realize that they just want to know because they care - yeah, right ;-).

I also caught up on paperwork approvals, bill paying and a few emails I have ignored for a little while. I didn't realize how many medical bills I had to pay. How could I be surprised about that?

Had a cup of coffee. My first cup in something like 6 maybe 8 weeks. Sure tasted good! And, I had a good lunch - sandwich and yogurt. When I got home, we went to Shapiro's Deli for dinner. Happy man!!

So...I plan to get back to the ofc tomorrow. It will be nice to dig into some real biz activity.


Take care and be well. - JimA


Sent via Blackberry. Please excuse short answers and typos.

Bandage off

Well...today I decided to wash up and to take off the bandage/dressing. The incisions seem to be healing fine. There appear to be two incisions - each about an inch. I can't see them closely except by reflection in a mirror. But, Jill says that the incisions are dry and aren't draining. So, I decided to skip putting on a new bandage. When I was released, the RN said the main reason I would put on a bandage would be to protect my clothes.

I did have a little pain (more of a dull pulling in my side) this AM when we went out for breakfast. Took pain meds when we got home and it seems to be OK for now.

Julie, Penny and Michael just left for the return drive to St Louis. We had a very nice short visit. This was our first time to meet Michael. He seems to be a nice guy.

Earlier, Jill and I went out to get a few groceries. I'll count that as one of my walks. I continue to do well. Breathing is much better than it has been in a while - probably more than a month or six weeks. I still have an occasional cough - but not really too much.

The way I feel right now I am pretty sure that I will give it a try to go into the office. Hopefully, people there will recognize me! It has been a while.


Take care and be well. - JimA


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Better

Well...not that things are perfect; but, I feel like I'm getting better each day.

Julie, Penny and Michael got here late last night - about 11-ish. Haven't seen them for a few weeks and this is our intro to the boyfriend. We stayed up chatting for a little while.

I slept very well. Didn't wake up until around 6am. And, I went back to sleep. Jill and I got up around 7:30 to go to the Farmer's Market. Jill got sweet corn and some bakery. I got my first doyle blackberries of the year - the best blackberries in the world!! Nothing like a small mixing bowl with 1/2 Cheerios and 1/2 blackberries. The absolute best. Geez, I am so glad that I have an appetite back.

Walking the market was good. I started my "short walks" yesterday afternoon. At the house, I just walked a short distance - maybe 40 or 50 yards. The market was probably a little more.

This afternoon we plan to take the kids to PF Changs. I want to get the hot & sour soup. It was the first "real food" that I could eat once I felt that I could eat out again. The soup has lots of stuff in it and has a nice kick.

This afternoon we will probably kick back to watch the White Sox.

Health wise, I am doing pretty well. My breathing is good - can't take really deep breaths yet - but I'm getting there. Using the 1.5 O2 setting is working out fine.

The pain in my right side is dulling. I am taking the pain meds. But, I'm trying to keep it at minimum levels. I take two before bed; but I keep it down to one other times. I'm contemplating trying my first showere today. Will need to remove and deal with dressing whatever wound is left.

Since I haven't done much lately, I get tired pretty quickly. But, that should improve over time. I have follow ups with both Einhorn and Birdas during the next couple weeks. I'm hoping for a break - just give me a couple weeks to recover before hitting me with whatever is next. Cross your fingers.

Thurs, July 20

First day out of hospital after surgery 6 days ago. Woke up this morning feeling pretty stiff. Not a lot of sharp pain - more a dullness on most of my right side. Slept kinda so-so. Didn't take either an ambien or pain meds.

I woke up several times during the night. Each time I had to find a new sleeping position. One position that won't work is on my right (surgery) side. Since I'm a side-sleeper, I usually spend about half the night on each side. This eliminates a big option for me. So...I must often move - upstairs in bed, downstairs on Lazy-boy, back upstairs. The Lazy-boy is the only way I can sleep sitting up on my back. Three or four moves during the night. I was able to finally get back to sleep; but, it took a little work each time.

But, I guess I'll figure it out. I decided today to break down and get the pain meds. They gave me pain meds in the hospital. But, I have such an attitude and hate to take something that I don't think I really need. But, I took a couple pills tonight at dinner. Waiting for them to take effect. (While I've been writing, I feel a bit better).

Unfortunately, they recommend strongly against driving - I guess they don't want a drug impaired driver on the roads. Probably a good thing. Jill has offered to drive into work tomorrow; but, that seems like an imposition since I can handle almost everything by email. Jill says that nobody really expects me to get into the office - but, I feel more "recovered" when I can get in even for a few hours. It's not so much that I must go to the office. It is more that things feel a bit more normal. I guess that's another thing that I'll need to figure out.

So...I actually went out with Jill for a real meal outside the house or hospital - my first in a long time. I'm still not feeling like I have much of an appetite - but, at least I didn't feel turned off by the food. We went to Macaroni Grill and I had the Penne Rusticca - one of my fav's on their menu. It tasted great and I ate much of. Left just enough for a lunch tomorrow. It was good to be out into the real world.

Physically, I feel better than I have in a while. I can breathe but I can't take real deep breaths yet. Seems to be improving through the day. Most movements seem to pull on my right side which, of course, hurts. I occasionally get a cough and must support my side - but, it is becoming somewhat routine.

Still not quite accustomed to the fact that they knocked me out, operated for about 90 minutes on my lung, took out 1/2 gallon of fluid during the operation, put two tubes in my lung to drain another gallon or so of fluids during the next couple days, and perhaps most oddly, they sealed the incision with talc powder.

I am able to walk OK as long as I don't try to move too quickly and my discharge instructions say that I should take short walks 4X per day. Gotta figure that one out. I'm not generally a "let's take a short walk" person. But, I better figure out how to manage this.

They lowered my O2 from a setting of 3 to 4 down to 1.5. Hopefully, this will be the start to getting off the oxygen completely. That would be nice!

Other limitations include no lifting over 10 lbs, no soaking my incision site (might need to limit to sponge baths for another day or so), no driving while on the pain meds.

So...I guess I just relax for the night. I've already started the pain meds - so, hopefully, they will kick in soon. I'm hoping the pain meds will help me to get a good night's sleep tonight.

JimA & Jill

I realize that many of you who follow my blog for travel. But, you may not follow my lung cancer blog at http://jimallen-lungcancerhappens.blogspot.com/

So...you may not get the latest re my health. I will provide a simple update. You can read more detail at the blog site above.

Both Jill and I have had Dr appts right after we completed the cruise. I met with Dr Forkin - my primary care doc. She handles pretty much all non-cancer-related med stuff. All of my tests and blood work were OK.

On Tuesday & Wednesday, I had various scans, xrays, blood work and tests. My blog has more details of these tests. Basically, my brain is OK. The breathing issue is being caused by significant fluid in my right lung and the fluid must be removed by a surgery called a talc pleurodesis. Scheduled for Friday.

Thursday, Jill has an appt with Dr Abonour (her amyloidosis doc). Appt went well and he said she is doing fine. The next Monday, she had an appt with her kidney doc, Dr Kraus. He was not as happy about a couple things and he apparently told her he would have to do the dialysis prep surgery very soon if she keeps straying - I don't remember the exact details.

I went in for my surgery very early Friday. I spent Friday through Wednesday in the hospital. I had a few minor complications but got through them all and was released from the hospital today in the late afternoon.

That's the quick update. Jill is much better since the trip. I had surgery to help my breathing. We'll see what kind of pain or other issues tomorrow brings.

For more details, feel free to visit my blog noted above.

Hurray!

Just had a visit from Dr Birdas - the surgeon. He said that my morning xray looked good - from the surgery healing standpoint. He confirmed that they will do another xray in a couple hours. Unless something unexpected comes up, they will release me later today.

Took a short two loop walk with the RN. Handled it pretty well. Dr Birdas asked her to lower my oxygen setting down to 2 to see how I tolerate it. He still wants my O2 concentration to stay at least in the low 90s. I can always increase the level if I am active. Think I need to buy a pulse ox monitor so I can be sure to keep at the level needed based on activity.

The RN is now testing to figure out what setting I need. First, got a baseline with just sitting with oxygen on. (96) Then a few minutes sitting without O2. (86). Now, back on to baseline (97). Next, will be some kind of activity. Yippee - they want me to use just a 1 level vs the 3-4 that I've been using.

I'm out!!!

Maybe discharged today

A doc came in early to examine. She seems to think it is still likely that they remove the second chest tube today. If that happens, I could possibly go home today.

Had a rough night with severe pain from constipation & gas. My entire midsection really hurt big time. The RNs gave me meds, walked me around the floor and gave me an enema. Finally had a little relief and was able to sleep.

This morning, I am feeling pretty good. Good breakfast - I stuck to raisin bran and blueberry muffin.

They continued to pump me with potassium & magnesium. And, they are giving me a low dose of lovenox - an anti-coagulant or blood thinner. They are also giving me meds to help with my bowels.

10:25am - the second chest tube is out. She said they will do an xray in about four hours to be sure that everything seems to be OK. Will monitor any leakage into the bandage. If all goes OK, we are still on schedule for discharge later today.

More later.

July 28 more

Report from Dr Henderson, "I received the comparison MRI of your brain from March. There are small differences between the two MRI studies (March and July), but I think these differences can be explained by differences in your head position and in the technique used to acquire the images. The number and size of brain metastases are stable from March to July. I do not see any new brain metastases or any metastases that seem to be progressing. As we had discussed at your visit last week, I recommend repeating an MRI only if you have new suspicious symptoms."

So...good news re the brain lesions.

Tuesday, July 28

So far today, I spent most of the AM being lazy in my hospital bed. I went to the bathroom twice - required quite a bit of wire & tube juggling. To be exact, 8 tubes & wires had to be unhooked and kept untangled. Then, I had to keep the chest tubes from tangling as I hauled the chest tube drainage tubs with me since I couldn't unhook from them.

After situating in the bathroom and doing my business, I had to repeat everything backward to rehook everything without things getting tangled. Basically, just going to the bathroom is quite a chore. Not painful - just a chore to keep things from becoming a tangled mess. Now, with one chest tube removed, I'll have one less thing to deal with.

I had my first real breakfast of something more than Cheerios today. I had a two-egg omelet with potatoes, peppers and mushrooms. Also, had hash browns and a blueberry muffin. I ate all but about half of the hash brown potatoes. Had two cartons of whole milk.

About 10:30am, a person came in to remove one of my chest tubes. Kinda like the catheter, removal wasn't painful. But is was a little bizarre feeling. "Hold your breath, breathe out, hold your breath again, breath out, take a deep breath and hold it" and let out let out a loud noise like a karate yell (OK, so I added that last one myself both times!!). Adding the final karate yell seemed to help me feel better about it.

He cleaned me up and re-bandaged the incision and remaining chest tube. He had me take a few test breaths and left. So much a procedure that I had fretted about.

So...now I'm sitting hear watching TV. Watched the last portion of Witness. Now watching something on the Travel Channel. It will have to go once I'm done writing. Some dude is in a jungle letting insects, slugs and slimy critters latch onto his skin. Apparently, the idea of the show is to show these little critters and how to get rid of them. Boom - I'll change the channel and they'll be gone.

More later since it is only 11:23am.