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.