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.