Visit today with Dr. Garland

Hi All -
We saw Linda Garland, the oncologist today, and she checked Rick's vitals, took some blood, listened to his lungs, etc. All was good. She asked if he was having a harder time breathing in Tucson than he did in Boston (he nodded) and she said it's the elevation here. She said that his treatment will start with radiation and then follow with chemo. (We talked with Jackie Lee from Boston yesterday and she told us that Dr. Garland feels that Rick should have chemo in addition to radiation - even though Sugarbaker told us it would just be radiation.)

Dr. Garland referred us to Dr. Alexander Chee, radiation oncologist at UMC. She said sometimes she orders chemo and radiation at the same time, but because Rick's radiation will be in the lung cavity right up against the heart, they wouldn't do both at the same time. We have an appointment to see Dr. Chee on June 1, next Tuesday. Dr. Garland said it will take him some time to plan the radiation and it won't start immediately. She said if there is too long of a gap (more than 2 weeks), she will give Rick a round of chemo before the radiation starts. We will e-mail her after the appointment next Tuesday and make a decision about the chemo. We asked how long the radiation will run and she said it varies, so I guess we will learn more next Tuesday!

One interesting thing is that an analysis was done by Oncotech of how Rick's tumor responded to different types of chemo. Dr. Garland was dismissive of the analysis because it did not test pemetrexed (Alimta) which she said was one of the most effective drugs for treating meso and the analysis has not been approved by the FDA. I will send an e-mail to Sugarbaker asking why pemetrexed was not included in the test and let you know what he said.

I will post again next Tuesday after we see Dr. Chee.

Home

Hi All -
Dry heat never felt so good! The flight from Boston was delayed landing in Dallas and we missed our connection. There was a good bit of rushing from one gate to another - and although Rick was supposed to have a wheelchair, he ended up needing to take the tram from one terminal to another and walking from gate to gate (following the Tucson flights on the schedule) until we found someone who managed to get us booked for an evening flight. Luckily, we were able to fly standby on an even earlier flight and got into Tucson about 4 hours after we were scheduled to land. Otherwise the trip was fine but Rick did more walking than he had done since before the surgery.

Predictably, Rick is very tired today after yesterday's travel, but we are enjoying being home. The dogs were so happy to see us, although I'll bet they miss Tricia and Mike's two dogs. (I am sure Tricia and Mike are happy to have only two dogs again.)

We visit Linda Garland, the oncologist, on Thursday. We'll post what we learn after that appointment.
Sue

Cleared to fly

Hi All
Rick saw Sugarbaker this a.m. and was released to the care of Linda Garland in Tucson. We reviewed the surgery and follow-up. Sugarbaker said that the tumor in Rick's lung had grown so large that it was a very tricky surgery and there are times when the tumor is that large that he decides that it can't be removed and closes without doing anything. He said he can remove 60% of the really large ones and closes 40% of the time - and that Rick was right on the edge between the two. Luckily, he got the whole thing out and is confident that Rick will do very well. (I am sure all those powerful prayers and good wishes on April 15 made the difference.) We read through the follow-up on all the lymph nodes that were removed and although DaSilva had reported earlier that there were two nodes that came back positive for meso, the actual report said only one that was right next to the tumor.

Sugarbaker said Rick will need radiation, but he doesn't think he will need chemo. It's funny, but that made me nervous instead of relieved. I want them to throw everything they have at this ugly cancer! I am still impressed by how approachable and personable Sugarbaker is. I call him Sugarcoater because he always insists on taking a positive perspective on everything..Which is a good thing...but for some reason I need to have every possible negative thing examined too. I just don't want the doctors to miss a single molecule of information that could save Rick's life.

We will return here for follow-up tests and visit in October. When I consider all that has happened in our lives since the end of February when Rick first had the fluid drained from his plerua - until now - it's incomprehensible. We have traveled a very bumpy and winding road that seems to have delivered Rick from the death sentence that his internist gave him. Please don't stop those prayers though. We always need them and we still need to find out what the oncologist in Tucson has in store for Rick!

Thanks to all of you for your continuing support.

Last few days in Boston

Hi All -
Thanks to all of you who have faithfully followed the blog and have sent prayers, good wishes, and supportive comments. Rick continues to get stronger every day. We visit the doctors again tomorrow and then should be cleared to return to Tucson on Thursday. It will be a very tiring journey for Rick, but when we get home he can rest in his own bed with his dogs at his side.

We drove to a beach in Quincy today and had a lunch of fried clams and clam fritters in the chilly but invigorating ocean air. It wasn't our usual healthy lunch, but tasted wonderful. Suzi and Timm returned to New Jersey this afternoon and we are counting the last few days here in Boston.

I will post tomorrow following the doctor's visit. After that, I will post if there is news - hopefully all good news. Otherwise I won't be posting every day. Again, thanks to all of you for standing beside us and lending support.
Sue

More of the same

Another good day, although Rick was a bit tired after the big movie field trip yesterday. Suzi and Timm came today and will visit until Tuesday a.m. David and Wendy also came by for a few hours after their son CJ's lacrosse game. The company is a good diversion, even though it may wear him out. No big deal - he'll just sleep 13 hours tonight instead of the usual 12!

It's Friday in Boston too!

Often on Fridays, Rick and I go to a movie, so that is what we did today. There is a theater directly across the street, so it wasn't a big journey and today we caught the mantinee, but it was fun. When we went in it was cold and raining and when we came out, it was sunny and warm, so we sat outside for awhile. All is good here.

Visiting Nurse #2

Hi all -
Recovery continues without exceptional events. The routine goes something like this - sleep, eat, walk, repeat.

A visiting nurse from Brigham and Women's visited yesterday and a nurse from the International Mesothelioma Program visited today. I was reminded of Annabel's (often repeated) observation that you can't just send anyone into the home. Home visits require special training and expertise. Both of these nurses were skilled and nice (although #1 showed up without appointment and #2 was the ICU nurse who received Rick directly from surgery and didn't remember that she had taken care of him.)...They took temperatures, blood pressures, reviewed medications and then they were finished. Their behavior was the same as it would have been if they walked into his hospital room to take vitals and then left. Thankfully, we don't need any special support but I wanted to ask them why they were part of the home visiting program and why they think home visits are important. They need a skilled mentor! Not my job, so we move on.

Starbucks today, but no coffee

Hi all
It is so good to be out of the hospital. Rick needs to eat a lot of protein and his brother got the idea to bring him lots of packages of salmon and a George Foreman grill. Crazy idea - and now we are cooking every meal on the grill! Who knew it could be so easy to grill salmon?

Rick is making great progress - eating and sleeping well. He still is very weak and he is taking so many drugs that make him light headed, sleepy, and nauseous (they all say that on the label). Often he thinks he can't go for a walk, but once I get him up and going, it is hard to stop him. This morning I convinced him to take the elevator, walk out of the building, and go to the Starbucks (which is the very next door) to buy a newspaper. He is limited to one liter of fluid a day and every ounce is supposed to have calories, so he hasn't been drinking coffee. The papers were sold out, but instead of heading back to the apartment, Rick just kept walking and circled the entire city block! It is cold and damp out, but he smiled through the entire walk and wasn't out of breath at all. He may be thin, but he is still very strong and once he discontinues some of these medications I think he will feel so much better.

Thanks for all your calls and good wishes.
Sue

Nothing special is good

Hi -
Thanks to all of you who have send so many cards, e-mails, and text messages to support us in this process. The clinic visit today was uneventful - which is great. If Rick's recovery continues on this good path, we visit again on Tuesday and then will be released to return to Tucson on Thursday, May 20.

Many of you have been asking when you can call to chat with Rick. Rick is answering phone calls when he has the energy to talk. He is very weak and has a quiet, hoarse voice because of the ulcers in his esophagus. He also sleeps a lot and the ringer is turned off during naps. So call if you want and he will answer if he can, but please remember to keep the calls short. Also, remember the three hour time difference and that Rick is down for the night before 9 p.m., Boston time. Thank you.
Sue

Morning in Boston

Hi All,
Dad's last 24 hours went really well. He ate and walked and rested. As evidenced by the picture he seems really happy to be home!

Dad has a clinic appointment today to make sure all his numbers are still good, and another one on Friday. The visiting nurse called this morning to schedule some appointments to make sure things are good there as well.

We will leave you with this picture and hopefully another boring day after he visits the clinic!

Free, Free, Free at last!

Hi all -
Rick was released from the hospital this morning. I didn't make him walk to the apartment this time - but he said it is his goal to walk the three-quarters of a mile to the hospital on his last visit before we go back to Tucson. He took his first shower that didn't require taping baggies to multiple IV's and he got to peel off the dozen or so leads that have been stuck to his chest and back for the last three weeks. Men have such a disadvantage when pulling sticky things off their hairy chests. (Now he knows what getting waxed feels like.)

The process was exhausting but he has walked the hallways of 180 Brookline several times and has had several meals. He is supposed to eat only small meals, so in an effort to catch up on the nutrition deficit, it feels like he is eating constantly. (That is good news.)

Rick's brother David is coming up to visit this evening for a short time. Other than that, we will be eating, resting, and walking. No excitement for awhile - which is a very excellent thing.

Still a go for Monday

Hi All -
Holly and Bucky went back to San Diego this morning and Rick and I have spent a quiet day watching Rick take in calories and walk laps around the tower. He has traveled 1/2 mile so far today. He is well enough to be bored, even though he is still very tired. (Remember, 24 laps is a mile and is curiously also the definition for mind numbing boredom!)

They are trying to back off on some of the meds. His blood pressure is a bit low, so they have had to reduce the lopressor - which is a bit of a concern because the lopressor has been keeping his heart out of atrial fibrillation. As his fabulous nurse Pam said, with 18 hours to go till freedom, we don't want anything to mess up. They are watching the numbers carefully and we are keeping our fingers crossed.

So say your prayers and keep your fingers crossed that all is well and that Rick can move to the apartment tomorrow. His brother David is coming up to help us move. Everyone feels such a need to help that David called to say he is bringing lots of salmon (protein) and mashed potatoes (potassium). Rick is still limited to a "mechanical soft" diet - which nurse Pam says is basically anything you can eat if you have no teeth. And yes, salmon can be eaten with no teeth!

The potential of Monday!

Good news keeps on coming. Dad had a great dinner last night, a great breakfast this morning, and is sitting and eating lunch with Mom for the first time in almost 4 weeks. He slept solidly through the night (first time for that too) and is feeling great.

Good news from the doctors this morning. If all continues to go well, Dad will be going home on Monday! They will want him to come in for a follow up appointment on Tuesday and again on Friday. If all goes well there then we can begin a discussion on heading back to Tucson!!!!!

Today and tomorrow will be a trial for Dad, taking all pills by mouth and getting up and moving like he was home. Here is a picture of Dad, fully dressed and waving his cane in his best "get those kids off my lawn" pose. He is so happy.

Dad's First Real Meal

It is 5:30 pm here in Boston and we just got a knock on the room door. "Who was it?" you ask. It was food services arriving with the dinner tray for the first time in 22 days. Dad's eyes got really big and when he opened it, there was Salmon, Mashed Potatoes, Applesauce and V8 Juice (unfortunately warm and low sodium, you can't have everything.)

We snapped a picture, sorry for the terrible quality as we only had an iphone. Dad is savoring every bite and Mom just said she thinks he gained back a pound already.

food glorious food!

So it has been a banner day so far for Dad. He began it this morning with mashed potatoes, followed it up with a banana at 10 and a bowl of chicken soup from AuBonPain. He has also switched from Boost supplements to Ensure (less sweet, he likes it much better!) and is approaching 1000 calories for the day before dinner! This is exactly what he needs to gain some weight and to make up for the 3 weeks of not eating real food (I'm not counting the tube feedings because that's not really eating!)

He seems so happy today and is currently sitting and discussing basketball with Bucky. We are all sitting in the room waiting for the nurse to come and hook his potassium drip up so we can take a good walk off the floor and into the rest of the hospital. We have been waiting so long for good news and now we have had two days in a row.

Keep the good thoughts and prayers coming! We need more days like this.