Travel day and day one

So...we decided to try a 7-day cruise on the Celebrity Reflection - just launched in October. This is a make-up trip for needing to cancel Galapagos in October.

The travel days are usually the hardest for us. But, with a late 11AM flight and wheelchairs in the airports, we made it without too much trouble. My portable oxygen concentrator has worked well. Should have gotten another extra battery. But, we are handling it OK.

On boarding day, we also didn't leave too early. Our car picked us up around 11AM. At the port, Celebrity had plenty of help with wheelchairs all the way to the cabin.

Normal required lifeboat drill. Luggage arrived and we are unpacked. The cabin is nice. We are still getting our bearings. Dinner was good; but, we have a table for two.

Back to the cabin to charge the POC batteries. Didn't take the cart to dinner; but, I will tomorrow. Plan to try the cart to go to the show tonight.

Take care and be well.

Sent from my iPhone. Please excuse short responses and typos.

Yesterday, I learned the full meaning of "Cross my Heart and Hope to Die - Stick a Needle in my Eye".  That's what happened at the eye doc.  I have a small growth on my right iris that has grown larger.  The doc recommended a shot of Avastin in my eye. It was pretty strange; but, not as bad as it sounds. I go back in a couple weeks for him to determine if it helped.

Losing too much weight

So...my docs are unhappy about my recent weight loss of 15 lbs since August 6. When I saw Dr E (lung oncologist) a couple weeks ago, he mentioned it. When I saw Dr F (Primary Care Doc) today she really emphasised it. I just haven't been hungry. Guess I will need to focus on eating more calories, more red meat and anything else to maintain/gain weight. 

Biggest issue is that I am almost never hungry.  Apparently, Dr F is sending a note to Dr E about giving a med to create appetite. I am eating when I notice that it is time to do so. And I am drinking Ensure+ two or more times per day. 

10/21 update

Several people have commented that it's a while since I posted. I have pasted an email sent to one of those people. One thing I left off is that I continue on oxygen 24/7. Below is the email.

Yes, I need to blog. Sorry about that. I am doing OK. The most difficult side effect from the chemo has been a significant itch - neck, shoulders, chest, belly, thighs, back of knees, top of ankles, etc. various locations and various times. Most irritating at night when it keeps me awake. 

Also, pretty significant, tiring cough. Hard enough that my chest often hurts. Initially, I had nasty mucus. Often, when I coughed up mucus, it was dark yellow. That has finally eased up the last few days. 

I am getting into work most days. Usually sleep until 8 or later. Takes quite a while to get ready. I am very slow. Typically get to the office late.  Usually leave early. My VPs and admins update me. I review and sign things that require my approval. I catch up on emails. 

I typically veg out in the late afternoon and evening. 

Back to work

I made it into the office Friday, Monday, Tuesday and Wednesday. In late. Out early. But, I was able to catch up even with the short days. Home today for my oxygen delivery. Should now have enough for the next week.  Better each day; but, not yet back to new normal. Expect to go to the office tomorrow. 

With so many treatments, it is hard to tell what has caused which side effects. Whole-brain radiation, pleuridisis surgery, flu shot, new chemotherapy.  Hard cough with yellow-brown mucus, really itchy skin on face, head shoulders, chest and feet.  Feet are closer to normal - I have ankles again. A few days before Friday were miserable. Better now. Couldn't sleep for two nights. If you can imagine - fatigue,  heavy cough, very itchy. Body wanted to sleep; but, cough and itch kept me awake. Hope I am past that onslaught of side. 

Final checkouts

Today, I finished final checkouts for occupational, physical and speech therapy. I think I am ready to go.

Busy Day & Good News

9/12 has been very busy. Full morning and afternoon with lots of activities. I am very tired. Orig release date was 9/22. Changed today to 9/17 releases. Hurray!!

Tuesday 9/11/12

Thoughts today of those lost or impacted by 9/11 eleven years ago.

My last 3 days at RHI have been busy and tiring. Activities scheduled almost all day. I am up to 400 ft walking with a walker. Lots of exercises for arms, legs, stamina, endurance, neck & shoulders.  By mid-to-late afternoon, I am pretty wiped out.

Today, they advised me that my targeted release date is 9/22.

Saturday Setember 8 Rehabilitation Hospital of Indiana

3rd day at RHI. Becoming familiar with the daily routine. 6:00 to 7:00 wake up, morning meds, move  by wheelchair to common area tables, breakfast delivered per order completed yesterday. Receive a written schedule for the day, 30-45 minutes for therapy - including occupational, physical, speech, respiratory, or other activities as needed.

Around 11:30 to 12:30 - lunch in the common area or cafeteria. Additional scheduled activities after lunch. Occasional opportunities for naps, TV,  chatting with other patients. Dinner at around 7:00 to 7:30. Very full daily schedule. I am doing a live-in program.

Goal is to get me back to my normal activities. It's like a boot camp. Obviously, medical staff is on-site - doctors, RNs, various therapists. So far, I have been worn out by the routine. I think I have made good progress. But, it doesn't seem to be something that will get me to a normal very rapidly. Seems like small steps are the norm.

During the days in ICU, I felt pretty crummy. For the days in recovery, I really had not made much progress.  After a few days at RHI, I definitely feel that I am making progress and I can now see the slow, small steps toward living normally.

Pleuridis recovery-August/July ,2012

In ICU for a few days. Was a rough time. Then, moved into a regular recovery room for a few days. Today, was relocated by ambulance to RHI - Rehabilitation Hospital of Indiana. This is a live-in rehab boot camp focused on getting me back to a normal life ASAP.

Pneumonia - still

Still having trouble breathing. Can't really walk even short distance, go up a few stairs or lay down without losing my breadth. I don't see being able to get into the office yet. I will have a chest CT and see Dr Einhorn on Wednesday. 

Pneumonia

So...as if I don't have enough...now I have pneumonia. Difficulty breathing for a few days. Went in for an X-ray and to see Dr Einhorn. He advised I have pneumonia and has started me on treatment. Sometime soon I will have a nebulizer delivered to the house for treatment at home. For now, I have a Zpac and an inhaler. Apparently, if I am not better soon, I will admitted for treatment in the hospital.

fatigue

I am very frustrated that I am still very fatigued. I assume this remains from the whole-brain radiation. My eyes are better and my throat is still dry but bearable. Of course, I can continue sleeping long nights and taking naps. But, I need to get more energy before our Galapagos trip. Will need to walk quite a bit on the islands.

Visited my Primary Care Doc for an annual physical this week. Most things seem to be normal - kidneys, liver, blood pressure, EKG, etc. She took me off my last BP med. Ordered additional blood tests because she thinks I might be anemic. Discussed the fatigue. Will do the anemia blood tests. I am to drink a couple bottles of Ensure+ each day for the protein. Hoping that something will come up to alleviate the fatigue soon.

7/11 Lungs - good news

Chest X-ray and met with Dr E today. Lung Cancer continues to be stable. No change to current treatment. It has been a good week. Friday - brain lesions are stable. Today - lungs are stable. If I could just get a nap, all would be good.

7/8 radiation followup

On Friday, I had a new brain MRI and met with Dr Henderson. Happily, the brain lesions/tumors are stable. I am still feeling pretty fatigued. All Dr H's neurological tests seemed to be OK - "touch your nose then my finger", "raise your eyebrows", "close your eyes tightly", "squeeze my fingers", "push me away/pull me toward you", and various other things. Eyes now seem fine. Throat still quite dry and fills with mucous. Other than falling asleep any chance that I get, I am feeling OK.

Very fatigued - 6/28/12

Pretty fatigued during the last few days.Walking gate is slow and a bit halting. Walking any distance is not really possible. Managed to walk about half of the Farmer's Market on Saturday. Throat dryness and mucus is marginally better. Eyes are doing much better since I have been using drops and ointment. All things considered, I think I am doing pretty well. But, will not be moving quickly over any distance any time soon.

Fatigue - 6/22/12 - 7 weeks

It has now been 7 weeks since my last radiation treatment. Before and after the trip, I had been getting into the office for 6 to 7 hours a day until yesterday. Significant fatigue started about Tuesday and Wednesday. By yesterday, Thursday, I was fuzzy, wobbly and very fatigued. I did not try to go into the office. Basically, I slept all day until about 2:30PM.

I was tired during the British Isles trip and during the first week back at work. But, the fatigue seemed to get worse each day this week - until it really beat me yesterday. After sleeping for the entire day, I was able to get into the office for a somewhat normal day today. Am able to do most normal activities and have caught up on most things.

I think I will plan on being pretty lazy this weekend. Going to the Farmer's Market tomorrow AM will be a last-minute decision based on how I feel.

Final British Isles

6/11-12 British Isles

After disembarkation, we stayed at the Amstel Hotel in Amsterdam. First afternoon, we mostly rested. Had tea and dinner at the hotel. 

Monday, we ventured out a little. Took a canal cruise tour. Turned out to be very sunny and warm. Interesting city though it lacks the architectural interest of the larger cities we have visited in Europe. 

We decided to have High Tea at the hotel at 4:00. Got way too much food. We should have ordered one with a second tea only. We got double of everything - sandwiches, sweets, scones... It was about 5:30 when we finished. We decided to skip dinner. 

We turned in a little early since we had an early pickup. Very good breakfast. The hotel was almost on par with The Goring in London. Our room and the restaurants looked out at the Amstel River. Lots of small boats. Also, Amsterdam is loaded with bicycles - like Copenhagen. 

Upon arriving at the United check-in, we learned that our flight was significantly delayed. But, we had already been rebooked to fly through Houston rather than Chicago. Good thing we got to the airport early since the new flight left almost an hour earlier. We will, hopefully, get home earlier than our original flights with the delay. Called our limo. Hope it all works out. Around 12+ hours total flight time. 

By the way, security was much simpler in Amsterdam. Not looking forward to Customs and international to domestic terminal change in Houston.  But, Chicago would probably be worse. 

We will be glad to get into our own beds. 

PS - It was a very long day. 6AM Amsterdam time to 7:30PM Indy time.  13-14 hours with 12+ hours on planes. Very glad to be home.

Cruise Reflections

6/10 disembark in Amsterdam. 

We left the Azamara Journey this morning about 8:00. Very easy. One of our smoothest disembarkations. In about 30 minutes, we were off, got our luggage, a porter to help immediately, driver waiting, loaded the SUV, 15 minutes to hotel, checked in. 

We are quite early and our room is not ready yet. Waiting in a comfortable conservatory - windows all around, ceiling is windows, lots of plants, soft music, river outside.  Brought a nice tea service. 

Really good to relax for a few minutes. 

Reflecting on the past week+, this has been a wonderful trip. Meeting good friends in London. Good food. Afternoon tea. Interesting tourist activities. Great time. 

South Hamptom boarding was a breeze. Onboard was highlighted by fun activities, outstanding entertainment, very nice opportunities for tea/latte. We ate very well. 

Our first suite had issues. But, we were very happy with the relocation to a different suite. Staff for the suite was excellent. In-suite breakfast each morning. Afternoon tea in cabin or on the Mosaic Cafe. 

Listened often to a piano lounge singer in the Mosaic Lounge. Good place to relax, listen to music, have tea and chat with other passengers. 

Most lunches & dinners were at Windows Cafe. Smallish buffet with stir fry,  pizza, salads, sandwiches, ethnic themed meals - German, Thai, Italian, Asian  and always wide selection of desserts. 

We only ate in the main dining once and a specialty restaurant once. 

A couple special events - High Tea for the Queen's Diamond Jubilee and an officers BBQ. 

I could write a long entry about entertainment, games, shows, guest entertainers and the ship's singing/dancing troupe. We really had lots of fun. 

I think that we will definitely watch for future trips on Azamara. Good ship size for us. Packed with the types of activities and entertainment that we prefer. 

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

6/4-5-6

Sorry if this is a repeat. It hasn't shown up that I sent it. 

6/4-5-6 British Isles

Monday - the Isle of Skye, Scotland - Ferry to Island of Shapinsay & Balfour. It was supposed to be a castle. But, it was really a very big house that happened to have stone walls and towers to look like a castle. As far as we know, no royalty has ever lived here. 

Tuesday, Invergordon, Scotland. Cawdor Castle - a real castle. Lord Balfour is, apparently, the person who financed the excavation of King Tut's tomb. We toured the castle & had tea in a small shop. Nice scenic ride while we were awake. 

Wednesday, at sea. Typical at sea trivia, games, shows and forensic lectures. This was his 4th lecture and we have enjoyed listening to him. 

Tonight we are in the North Sea. Ship has been rolling big time. Dinner, tea/latte, lecture, show have all been heavy rolling. Should be a rocky night. 

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

6/3 At sea

6/3 Brtish Isles - at sea 

Today was a day at sea sailing to Scotland. We attended the 3rd lecture about cold cases, DNA analysis and the Russian Czar and his murdered family. The speaker has been very good. Quite informative about crime solving techniques - application of new methods for very old cold cases. 

Great Britain celebrated the Queen's Diamond Jubilee today - 60 years as Queen. The ship was decorated with the Union Jack colors, served high tea and showed the BBC broadcast on a movie screen. 

Mid-day, we changed cabins. When we rec'd a survey, Jill told them about the chilly temp and the noise from workers and from daytime practicing by the band in the Cabaret just below us. 

We accepted the ship's offer to move to a different suite at the rear of the ship. Equally nice suite but much quieter. 

By the way, Jill wants to know if anyone has a cardamom cookie recipe.  

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

6/2 Wales

We visited Holyhead, Wales today. Toured Caernarfon Castle. It is one of
the most impressive castles ordered built by King Edward I. Prince Charles
was invested at Caernarfon as the Prince of Wales by Queen Elizabeth II.
The castle was built on the location of a Roman fortification from more
than a thousand years earlier. Evidence can be found in the area from
inhabitants about 7000 years ago.

The walking was tiring. I napped in the bus returning to the ship & I
napped in the cabin after lunch. We enjoyed trivia & shows.

Take care and be well.

Sent from my iPhone. Please excuse short responses and typos.

May 31 British Isles

5/31 British Isles

Anchored at the Isles of Scilly this morning. The main island of St Mary's is 2-1/2 miles by 1-3/4 miles. The Capitol city, Hugh Town, is on a sand bar. No, there are no excursions - though most passengers disembarked to see the beaches (brrrr) and pre-historic buildings. Not us. Jill did a little laundry and I got our Internet devices setup. Don't know that we will use them much - but, we'll see. 

Last night we were out until 12:30AM - yes, after midnight - listening to a piano lounge-type singer. Billie Joel, Jim Croce, Barry Manilo. Tonight, Elvis, Frank Sinatra & the Rat Pack

Tonight was the first show by the ship's eight-member cast of singers/dancers & 7-piece live orchestra. It was a great show. We were front row with dance floor on the same level. It was like watching the pros dance at DWTS! 10's all around. 

Despite not getting off the ship, we have been very busy. Lots of trivia - yes, we win  lot. Food & dining have been very flexible and very good. So far, it has worked out well for us. 

Take care and be well.

Sent from my iPhone. Please excuse short responses and typos.

5/30 British Isles

Sorry, first partial draft sent by mistake. 

5/30 British Isles

After an easy boarding, went to the Aquafina specialty restaurant. My steak was very good. But, Jill sent hers back because it was very rare for her. 2nd time still undercooked. She ate around the edges. Chocolate soufflé was excellent. 

After dinner, we had to wait because the shows are at 9:30. It looks like the entertainment will be very good. Last night was a sampling of the performers. 

Today, we went on an excursion on Guernsey. First, the Guernsey Freesia Centre which grows award winning flowers. Then, Bruce Russell Jewellers and The Little Chapel. At the end of the tour, we got Freesia bouquets - which are now in a vase in our cabin. 

We learned the island history and saw much of the 24 sq miles of the island. 60,000 residents. The island has honored allegiance to the British Crown since 1204.  Guernsey is the only English land occupied during WWII.

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

5/30 British Isles

After an easy boarding, went to the Aquafina specialty restaurant. My steak
was very good. But, Jill sent hers back because it was very rare for her.
2nd time still undercooked. She ate around the edges. Chocolate soufflé was
excellent. After dinner, we had to wait because the shows are at 9:30. It
looks like the entertainment will be very good. Ton


Take care and be well.

Sent from my iPhone. Please excuse short responses and typos.

Boarding

90-ish minute car ride from the hotel to the ship. Easiest boarding ever.
In our cabin. I am totally unpacked and Jill is almost done. Very nice
cabin. 45 minutes until lifeboat drill. Reservations at one of the two
specialty restaurants tonight. Open dinner sitting - so...no regular dining
partners to meet.

So far, so good.

Take care and be well.

Sent from my iPhone. Please excuse short responses and typos.

5/28 2 London

5/28 - 2 London

Tonight, we went to the Palace Theatre to see "Singing in the Rain". The show was fun and we really enjoyed ourselves. I couldn't believe it when it started to rain very heavily on the stage for the title song just before intermission!! Someone had told us not to sit in the front few rows. Wow! The Gene Kelly character was soaked and kicked at the inch+ deep water on the stage. The first 5 or 6 rows got quite wet. Happily, our tickets were row J. We thoroughly enjoyed the show. 

All in all, we have had wonderful days in London. Great time with Barbara & Anne. The aquarium, the London Eye, traditional Sunday dinner, two-level bus tour, afternoon tea and the show. We did a lot in just 2 days. 

Looking forward to boarding the Azamara Journey tomorrow. 

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

5/28 London

5/28 London 

Breakfast at The Goring is very good. Cereal, big bowl of berries, Danish, coffee, OJ. We will meet up with Barbara & Anne later for some kind of activity. 

Met Barbara & Anne at The Goring at about 10:30 AM. After chatting, we decided to take a 3 hour bus tour. We had a live narrator. He identified many of the significant buildings, areas and events. Very interesting. Was funny - B&A said that we saw things that they had never seen. Isn't that the way it is? It was sunny & hot. Glad we brought water. 

After the bus tour, we settled on The Inn at the Park at St James Park for afternoon tea. Jill & I shared since we expected  it would be too much. It was. We both had plenty and the company of B&A was wonderful as always. After tea, we were tired. Shared a cab back to The Goring. Now, it's time to get ready for "Singing in the Rain". 

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

Allen - British Isles

2012 British Isles

5/26 Finally arrived at The Goring at 11 PM. It was a long day. More than 16 hours from wake up to hotel!! Up at 2:30 & 2:45 AM. Pick up at 4 AM. Ugh!! 

Flight at 5:50. A stopover at Washington Dulles - where our wheelchairs did not arrive :-( We had to walk more than 50 gates plus a couple retail areas. Much too long for us. We made the connection to London; but, we were very tired. 

7 1/2 hour flight to London was pretty uneventful. Two meals, big lounging seats, movies at our seats, some naps - can't go wrong with that. Amazingly, we were out of Heathrow Airport in about 45 minutes. Must be a record. 

5/27 First day in London was great. Met up with friends at the London Eye - a very large ferris wheel. Wonderful panoramic views of London. After the 45-ish minute ride, we all had tea before taking a cab to Porters for dinner. Traditional Sunday special - Roast beef with gravy, Yorkshire pudding, carrots and potatoes. We shared a meal. Dessert - summer pudding - one of my favorites & chocolate cake. Back to The Goring & relax for the evening. It was a good day!

Take care and be well. 

Sent from my iPhone. Please excuse short responses and typos. 

5/22/12 Eyes getting better

After a few days using the eye ointment from Dr Phan and doubling up on eye drops, my eyes are getting much better. Minimal crusting. Most redness gone. Woke up early today and came to the office about 8:45. Energy level is OK. Now, I don't feel like I could fall asleep. Have started using the RadiaPlex Gel for radiation dermatitis - somewhat like a sunburn. Dr H had given me the gel in anticipation of this side effect on my bald head. A positive is that my hands are getting softer from applying the gel at least 3 times per day.

But...I forgot that today was a scheduled building emergency evacuation test at 9:00. I remembered at 8:55 and headed for the elevator, went out to the fountain next to the building, sat on a bench in the sun and played yatzee on my iPhone. Watched as the Simon folks walked in orderly single file out their designated doors and walked to their emergency meeting locations - mostly a block or so away. No way that I could walk down 10 floors for a test! For a real emergency, I would hustle down the stairs. But...not for a practice.

Apparently, the people from my area left at 8:45 and headed to a restaurant for breakfast. They came back around 10-ish. That's the advantage of remembering.

eye news

My eye doc told me today that the crusty eyes are due to them being overly dry as a result of the radiation. She gave me different drops and an Rx for an ointment for the right eye. Left eye is still 20/20. Right eye is worse but the doc thinks it will get better once the eye is better lubricated. The swelling that she saw at the optic nerve is reduced. The growth that she saw on the iris is smaller. Looks like the brain radiation is helping with the swelling and the growth. Other than driving on a sunny day with dilated eyes, it was a pretty good morning.

Didn't go to the office

Today, I did not go into the office - the first time in years - except, of course, for trips ;-). I have been dealing with very crusty eyes, heavy mucus in my throat and significant fatigue. I have gone the office for short days throughout my radiation treatments and a little more than a week afterward. But, today, I just couldn't do it. I turned off my alarm early and just slept in. It was after 10AM before I went downstairs to take my meds and eat breakfast. I managed 3 weeks of getting up at 6:30 to get to the radiation treatments and 1 1/2 weeks of getting into the office every day for meetings, interviews and other stuff. Today, I realized that I needed a day to do nothing. So...that's what I am doing. Jill and I did go out briefly for lunch. After mostly sleeping until almost 2PM, I am finally feeling like my new normal. Eyes are still crusty. Still mucus in my throat. But, I am finally feeling like I am not totally wasted. I see my eye doc tomorrow. Maybe she will have a suggestion for my crusty eyes. 

5/12 Rough Day

Today was a little rough. Both eyes were pretty crusted. I could barely spread the right eye lids. After going downstairs to take my pills and eat some cereal, I sat back in my chair and slept most of the day until almost 6PM. When I finally got up, my eyes were a little better. So, we went to Jason's Deli for lunch so I could have a root beer float. The cold helps to clear up my throat for a while. Hope tomorrow starts better since we are going to McCormick & Schmicks for Mother's Day Brunch.

5/11/12 One week since last radiation

Doing relatively well since my 15th and last whole-brain radiation last Friday. My eyes have continued to be pretty crusty; but, they seem to be stable. A damp, warm washcloth helps. The eye crustiness seems to be more this time. My throat is still filling with mucus; but, I keep drinking to clear it temporarily. This time, I have not yet had thrush (sores in my mouth). Fatigue can be a challenge; but, I have been able to do most things. In general, I seem to be handling the impact from the radiation this time better than the radiation 3 years ago. From my blogs back then, it seems that the worst fatigue started a week or so after the final treatment; so, I might start to feel side effects more in the coming weeks. In any case, we have a trip coming up and I plan to be on that trip. Later, the Olympics start and we will be planted in front of the TV watching every event as much as possible.

Weekend May 5-6

Made it thru the weekend after my 15th & final radiation treatment. Slept lots. Ran a few errands. But, mostly sat in my Laz-E-Boy watching TV and playing games on my iPad. Watched Pacers, Miami, Blues & Bulls.  Watched several episodes of The Big Bang and the new Masterpiece Sherlock Holmes - as well as several of our series faves. Eyes got pretty crusty - lots of warm washrags. Lots of mucus in my throat. Feeling ver fatigued. Pretty slow when I got up this morning. But, eventually, made it to work.

15th - Final radiation

Hurray!!! Today was my 15th and FINAL whole-brain radiation treatment. Next week I can go back to sleeping a little later. For the last few days, I have had a crusting on my eyes - especially the right eye. I started worrying that I might have pink eye. But, Dr H told me today that I definitely don't have pink eye. Apparently, due to the recent activity in my right eye, the radiation was aimed to include the eye up to behind the lens. This is what is causing the crustiness. He said that it should go away over a short time. Best treatment is a warm washcloth to clear the crusty bits. I had actually started that a few days ago. ;-) 

He asked about headaches. I have only had one brief, minor headache that went away pretty quickly. So, hurray, no steroids at this time. He asked about my appetite since 3 years ago I lost all taste for food. Currently, I am eating normally and have no trouble tasting what I eat. I have a little brain fuzziness; but, not enough to prevent normal activity.

Fatigue has been consistent so far. Yes, I have been pretty fatigued; but, I have been able to work a normal schedule. I have left the office slightly early on a few days; but, it hasn't been very significant. I have been napping during Wheel of Fortune; but, that was normal for me prior to radiation.

I am looking forward to our next trip to the British Isles. When we return, Dr H will schedule a follow up MRI to determine the status of the brain lesions.

May 1, 2012 Brain Radiation

12th whole-brain radiation treatment completed this morning at 8:30. Just 3 more treatments to go this week. Then, I will probably have a followup MRI in a couple months to measure success. I am gradually getting more fatigued as the radiation accumulates. My mouth is frequently becoming coated with a thick mucus. Need to drink lots of fluids and rinse my mouth often. Generally, I feel OK. Sometimes, I eat because I realize that I should vs actually feeling hungry. I have lost a couple pounds; but, nothing significant. Based upon 3 years ago, some of the side effects won't show up until after treatment completion. Can't wait to sleep a little later in the mornings!

April 29 Doing OK

On Friday, I completed the 10th radiation treatment. Two weeks down. One week to go. So far, I have experienced just two significant side effects. Since the middle of last week, I have gradually become more fatigued. Basically, this means that I get quite sleepy throughout the day. Also, my throat has become very dry and congested with phlegm. I must drink water, gargle, suck on a lemon drop or do whatever I can to clear my throat. At least these are side effects that I can deal with.  I take naps. I slept have the day on Saturday. And, I keep a drink close - mostly water, tea and gatorade.

On April 26, 2007, I received a confirmed diagnosis of non-small-cell lung cancer – adenocarcinoma. After months of testing for allergies, asthma and other things that might cause a persistent cough, a routine chest x-ray at an annual physical indicated an issue and a biopsy confirmed the diagnosis. This began a litany of treatments that are outlined elsewhere in my blogs.
At the time of this Stage IV NSCLC diagnosis I learned that my prognosis was not good. Median survival after this diagnosis is 8 months – less than a year. Five year survival is 1%. Today is the 5th anniversary of my initial diagnosis!! I am officially part of the 1%.
Of course, the fight continues. Just this morning I received the 9th of 15 whole-brain radiation treatments for brain lesions/tumors. I continue to take Xalkori (Crizotinib) for my lung cancer. I was in the test for 16 months and have continued with great success. I learned that my gallbladder had adenocarcinoma on it when it was removed. I have a small growth on my right iris.
The past 5 years have included many highs and some very challenging lows. But, we have continued to live life to the fullest. By my rough count, we have cruised approximately 31 weeks since my diagnosis. We have 4 cruises scheduled through mid-2013. And, we have frequently joined in family celebrations for birthdays and weddings.
Despite the ongoing risk of something reoccurring or something new, I am optimistic. The healthcare at IU Hospital and the IU Simon Cancer Center is world class. Dr Larry Einhorn (lungs) and Dr Mark Henderson (brain) have been outstanding. I have asked to be treated aggressively and they have done so. The entire team of many doctors and other medical professionals has been a great benefit for me.

Here is hoping for at least 5 more years!!

Pic of new radiation mask

For those who might be curious, this is a picture of the mask used for my whole-brain radiation treatments. The green tape outlines the area treated by the radiation.

April 25 Brain Radiation

Radiation treatments #6, #7 and #8 this week. Seven treatments to go. Visited with Dr H this morning. A little more fatigued the past few days. Had to nap yesterday late AM. I was OK for the rest of the day. Throat is drier. Dr H said that is normal due to the upper saliva glands being within the treatment area. They produce less saliva; but, that should correct itself when treatment is completed. Dr H examined my throat - no sores developing at this time. He gave me a tube of cream to use if my head begins to itch or get red - like sunburn.

4/19-20/12 radiation

Treatment #4 yesterday and #5 today. Was a little sleepy yesterday afternoon. Radiation or getting up at 6:30AM. Up earlier than normal this week?? Eyes a little drier than normal. Put in extra eye drops. Nothing else that I have noticed from the treatments. Glad to have the weekend off so I can sleep in.

4/18/12 4th treatment

Treatment a little earlier today, 8AM. Once again, simple and short. Visited with Dr H. nothing significant. No side effects yet.

2nd radiation

Nothing significant today. Rec'd 2nd radiation treatment. Arrived at 8:20. Complete and on my way to the office at 8:30. Very early in the cycle - no side effects yet.

4/16/2012 First whole brain radiation - second time around

Early today was my 1st whole brain radiation treatment. Well...it is the 1st for this time around. Actual 1st whole brain radiation was 3 years ago. See my March 16, 2009 post of a pic of the mask. I have a new mask that is pretty much the same. It firmly holds my head to prevent movement. It's a good thing that I am not claustrophobic! Treatment this morning was less than 30 minutes (including a few once-every-fifth-treatment xrays) and I was in the office by 9AM. As was the case in '09, I don't really have any impact from the radiation yet. I went back to re-read the '09 posts so I could see my reactions at that time. It appears that considerable fatigue will occur after multiple treatments. Dr H thinks I may experience greater fatigue since this is my 2nd round of whole brain radiation. I guess I will wait to learn if I experience any of the other side effects.

Treatment schedule

Mask formed to my head, CT scan with the mask and schedule reviewed. I will receive a whole brain treatment each day - Monday to Friday - for the next 3 weeks. 15 total treatments. Expect side effects similar to 3 years ago. Dr H says that I should expect more fatigue this time.

4/11/12 Brain Radiation

Well...I learned this morning that I will be receiving another round of whole brain radiation. It seems that the MRI last week indicates 4 new lesions. There are now 8 lesions that have not yet been treated and there are 2 lesions that have been treated previously but have now grown. Considering the growth in my right eye iris and some balance issues that I have experienced, Dr's Henderson (radiation oncology - brain), Witt (neurosurgery - brain), Einhorn (oncology - lungs) and Phan (ophthalmology - eyes) have discussed treatment options.

After discussing with me, it seems that the most logical, proactive approach is to have whole brain radiation. I go in this afternoon to have a mask created - probably similar to the mask used in 2009. I will also see Dr H to discuss treatment schedule. I need to go back to my 2009 postings to remind myself of the side effects that I had the first time I had whole brain radiation. Dr H feels that, even though I had significant side effects, this is the best treatment option.

Anniversaries, eye, brain - April 4, 2012

First, the good news. April is the 5th anniversary since my lung cancer diagnosis and first chemo. Only 2% with Stage IV lung cancer survive 5 years after diagnosis!! March was the 3rd anniversary since my first radiation treatment for brain lesions. I am lucky to have great doctors and treatment options at IU Hospital and the IU Simon Cancer Center in Indianapolis.


Next, re: my right eye. After an MRI of the orbits (eyes) yesterday, it was decided that a biopsy is not really necessary. So...today's "needle in the eye" was cancelled. Instead, the opthalmologist will monitor the growth. If it gets larger and begins to cause side effects, they will determine a process to remove it. This will probably include breaking up the growth and aspirating (vacuuming/sucking) it out of the eye.
 
Finally, the issue of brain lesions. Of the 13 lesions originally treated with Gamma Knife radiosurgery in August, 2011, 3 have shown possible growth since early 2012. The lesion treated with Novalis radiosurgery in December, 2011, is stable. A new lesion spotted in early '12 has grown. I have exhibited no new side effects; but, lesion growth means treatment is needed. The doctors will discuss and determine a course of action in the next few days.

It's always something else!!

Saw the opthalmologist/retina specialist today.  My vision is the same as it was 3 months ago.  However, apparently, a new "growth" has appeared on the iris of my right eye.  This wasn't visible at my last visit.  After several dozen pictures, IV contrast dye and more pictures, she told me that she would consult with others to determine next steps.  She contacted my brain/radiation oncologist to have additional views added to my scheduled MRI next week.  Then, a possible biopsy of the growth will be done on Wednesday.  Using the pictures, MRI and biopsy, the doctors will determine an appropriate approach.  So...I will wait & see what comes next. 

Allen final trip update

2012 9 CARIB CRUISE

3/23 At sea. Lazy day. Using up complimentary online Internet to check email. Have just a few minutes left. 

Mostly packed for disembarkation tomorrow AM. Time has flown. We've had a great time. 

Allen trip

2012 5 CARIB UPDATE
3/19 PM Good dinner. OK show. Ankles/feet swollen for 3rd day. Maybe more
salt than normal for me.
3/20
St Marten Excursion today. I think it is a bus to see sights. Docked next
to the Norwegian Epic - large ship. Very sunny. Feels like mid 80's or
warmer.

Allen cruise update

2012 6 CARIB UPDATE

3/20

Learned yesterday at dinner that election voting is required by law in Australia. You are fined for not voting. We talked about the craziness of US political parties, primaries, elections, electoral votes and much of the silliness of US politics. 

Excursion today to see a small zoo. We had a guide from Kenosha, Wisconsin. All kinds of small animals - cockatoos, parrots, macaws, leopard tortoises, turtles, monkeys, lizards, snakes, ocelots, iguanas, an ostrich, ducks, and other colorful birds. 

After the zoo, we toured (drove around) the island. Our guide was very talkative - pointing out beaches, hotels, historical sites, etc. She also gave us a brief history of the island and explained the Dutch/French split of the island. 

The bus stopped a few times for photo opportunities - we stayed on the bus. The long walk from the ship to the bus and a 45 minute walk at the zoo was more than enough exercise for us. 

Back onboard about 4PM. Afternoon tea arrived just after we got to our cabin. We both had a few snacks since we hadn't eaten lunch. 

Another good dinner with a great group of table-mates. 

Not interested in the magician tonight. So...I am relaxing in the room. Jill went out to play the slots. 

Allen update

2012 7 CARIB CRUISE
Morning trivia. Then, time in the Persian Gardens at the spa. Dry sauna,
steam herbal sauna, whirlpools, therapy pool and other relaxing comforts.
Jill won on the slots last night. She played $1 slots for about 3 pulls.
Of course, she won $156. She sure is lucky.
Trivia this afternoon - 3 times.

Allen trip

2012 8 CARIB UPDATE

3/22 Relaxing day at sea. 2 trivias. Not much else planned. Sunny. Warm. Gorgeous weather. The pools will be packed with trying to get more sun - sunburn.  Nice day to sit on the verandah. Slept & woke up to being a little chilly on the verandah. Remainder of the day was a typical, slow day at sea. 

3/23 Last day - at sea. 

Allen 3/16 updates

CARIB UPDATES
3/13
Managed to locate wifi service on Aruba. Used a new list app on my iPhone
for trip updates. I hope it worked.
Saw Midnight in Paris at the cinema. Good movie. Woody Allen film.
Our dinner table mates are very nice and interesting. Food has been good.
Typical day - Breakfast in our cabin. (Should have gone on the verandah
today.) Cereal, bagel, donuts, juice, chocolate milk, coffee, and lots of
pills. Added bacon today. Then, we usually skip lunch. Trivia has
conflicted with afternoon tea. But, George leaves cookies on our table.
Dinner is usually pretty big. We usually don't get all courses. But, we
always get dessert. At the cinema, we have popcorn.
3/14
Looks like we will walk around Willemstad (Curaçao) today.
Oops. Change that. It seems that downtown is a longer walk than we can
handle. $15 one way for a taxi - I don't think so. In Aruba, Jill bought a
few bracelets and necklaces for around $3 each. Not worth $30 taxi fare to
get to the shops.
Just relaxing onboard. A couple afternoon trivias. Maybe get some ice
cream.
3/15 Thursday at Sea-Wonderful breakfast this morning on the verandah. We
decided to have lunch in the dining room. Our dinner table-mates (from
Australia) joined us along with another US couple and a couple from
Holland. We had a good meal and good conversation.
Jill has gone to play the slots. I am relaxing in the cabin. Progressive
Trivia at 4PM - same team throughout the cruise with scores totaled at the
end.
Docked in Grenada. Going on a glass-bottom boat.

Barbados

2012 3 CARIB UPDATES

Docked in Grenada today. Went on a glass-bottom boat. Small boat - 13 passengers. Glass-bottom was four 18" x 36" viewing holes.  It was like looking down rectangular chimney with a window into the water. Not like others we have been on. It was so-so due to rain yesterday & today - the water was very cloudy. It was quite warm. 

Many streets in Grenada are very steep -  like San Francisco. Very narrow - I would never want to drive here.  Stop signs & stop lights seem to be " only a suggestion". 

Some nice buildings; but, most of the island buildings look like parts of the larger cities in Jamaica. 

3/17 Barbados today. Took an early excursion. Saw Park's Farm - a working farm with black- belly sheep. Next, Andromeda Botanical Garden. Very nice. But, a little strenuous for us. We made it but we were both pretty tired. Good view the coast, ocean waves and rock formations. 

Allen trip update

2012 4 CARIB UPDATE

3/18 Docked this morning in St Lucia. Went on an aerial tram in the RAINforest. And boy oh boy it really rain!! 

Luckily, the tour guides provided rain ponchos. We still got a little wet; but, we would have been drenched without the ponchos. The rainforest was beautiful - like in Jurassic Park. Dinosaur-size leaves, plants & trees. We went low in the forest one way and returned high above the forest. 

When we returned to the cabin, Jill soaked in a warm tub and I took a warm shower. Damp clothes draped on chairs. Luckily, most stuff was in a pretty waterproof tote. But, our passports were in my pocket. They are currently being pressed in a magazine. 

3/19 Docked in Antigua. Went onshore briefly to check close stores & check for wifi. Couldn't get email on my iPhone. Will need to use the ship's wifi later today. 

No excursion today. Maybe a good day for a nap. 

Sunny & 81. Quite hot in the sun. Trivia 4times today. We have been mediocre. Jill is up $200+ on the slots. She hasn't played a lot.  But, of course, she wins when she plays. 

Allen update

3/10/12 CARIB CRUISE

Travel yesterday, 3/9, to Ft Lauderdale was OK. Our wheelchair guy at the airport hooked us up with a ride to our hotel. Nice clean Escalade. Flat rate. Renaissance Hotel - Port Everglades is very nice. 

Boarded the Celebrity Constellation about 1 PM Saturday. Sail tonight. Next 2 days at sea. Will arrive in Aruba Tuesday AM. 

Settled into our cabin - very nice Royal Suite. Met our cabin steward, Olivar, and butler, George. Relaxed a bit -  really needed it.  Went to the welcome show. It appears there is lots of excellent music talent on this ship.  We are looking forward to the shows. 

Sunday - breakfast in our suite. Joined others for trivia three times. We have very nice teams.  Did OK but didn't win. Listened to Caribbean music poolside.  Nice tea delivered by George. Dinner in the Italian Tuscan Grille tonight. Dinner was fabulous!

Monday, 3/12, at sea. Relaxing day. Breakfast in the cabin.  George set up white tablecloth and roses. Morning trivia- so-so.  Cinnamon ice cream. 

Party band by the pool. Met Nigel & Margaret - a nice couple from England. Chatted for over an hour. We will probably miss afternoon tea due to trivia. 

Back to our normal dining room table tonight. We'll see if anyone else shows up. We were alone on Saturday and we were in a Specialty restaurant last night. 

The ship's cast show was excellent last night. Ventriloquist tonight - so, we might go to a movie - Bridesmaids. 

Met our table mates tonight. Two very nice couples - one retired in Sarasota and one from Australia. Saw Bridesmaids at the cinema - not our kind of movie. 

 

Allen 3/16 updates

CARIB UPDATES
3/13
Managed to locate wifi service on Aruba. Used a new list app on my iPhone
for trip updates. I hope it worked.
Saw Midnight in Paris at the cinema. Good movie. Woody Allen film.
Our dinner table mates are very nice and interesting. Food has been good.
Typical day - Breakfast in our cabin. (Should have gone on the verandah
today.) Cereal, bagel, donuts, juice, chocolate milk, coffee, and lots of
pills. Added bacon today. Then, we usually skip lunch. Trivia has
conflicted with afternoon tea. But, George leaves cookies on our table.
Dinner is usually pretty big. We usually don't get all courses. But, we
always get dessert. At the cinema, we have popcorn.
3/14
Looks like we will walk around Willemstad (Curaçao) today.
Oops. Change that. It seems that downtown is a longer walk than we can
handle. $15 one way for a taxi - I don't think so. In Aruba, Jill bought a
few bracelets and necklaces for around $3 each. Not worth $30 taxi fare to
get to the shops.
Just relaxing onboard. A couple afternoon trivias. Maybe get some ice
cream.
3/15 Thursday at Sea-Wonderful breakfast this morning on the verandah. We
decided to have lunch in the dining room. Our dinner table-mates (from
Australia) joined us along with another US couple and a couple from
Holland. We had a good meal and good conversation.
Jill has gone to play the slots. I am relaxing in the cabin. Progressive
Trivia at 4PM - same team throughout the cruise with scores totaled at the
end.
Docked in Grenada. Going on a glass-bottom boat.

Week of Feb 1, 2012

Brain MRI & met with Dr H - radiation oncologist. Multiple lesions treated w/ Gamma Knifes remain stable. The lesion treated with Novalis actually reduced. There appears to be a new lesion. A little concern; however, it is very small and we will wait until a followup MRI in April to determine if treatment is needed. Also met dermatologist - full exam - nothing found - follow up in one year.

1/25 CT and lung cancer status

Chest/Abdomen CT this morning + visit with my oncologist.  Lungs continue to be stable.  No change in use of the Crizotinib (Xalkori) since it is obviously working.  Dr E has decided that my lung cancer is stable enough to extend the follow up time.  Will now see him every 4 weeks with an Xray on the 4th week and a CT on the 8th week.  He feels that this will be sufficient to monitor for any future tumor growth.

Next news will be Feb 2 when I get an MRI + visit my radiation oncologist regarding the brain lesions.

New Year - 2012

We made it through the holidays without any significant issues. Very busy Thanksgiving and Christmas with kids and friends. As always, the food was abundant and delicious. We visited Memphis for a long New Year's weekend. Was very nice. Great hotel. Great food - lots of BBQ. Saw Graceland and the Memphis Zoo. Happily, we were both able to walk the entire zoo because they had plenty of benches for resting. Very glad that we are both starting 2012 without any new major medical issues. Things are pretty stable - and, that is a good thing!!