DONE !

The surgeon appointment today went well this morning. I am progressing at a good pace and have been given the OK to go back to work on Monday. I'm not sure how my energy will hold at first but I'll give it a shot. He said it will be a while until I'm completely recovered but that it would be good for me to get back into the mix.

For the coming year I'll have follow-up appointments every three months. The first and third will have x-rays and the send and fourth will have CT scans. He re-stated to me that the pathology results were encouraging and that there's no indication of spread. I can't hear that enough times

This is taking a while to sink in for me. I have been on this task since the middle of July; longer if you count in how sick I had been last January. Now it is slipping, somewhat abruptly, into the past. I just hope it stays there. It will take me a while to get back into the swing of real life but I'm ready to give it a shot.

2,500

I have been working with my plastic breathing exerciser this week. As I mentioned before, I was up to 2,250 ml and had been stuck there for a while. Today I was determined to get to 2,500. I've been at it off and on all day and managed to get there just one time. That's better than not at all but still a little frustrating. I go back to the surgeon tomorrow for my first follow-up appointment. I'm curious to see if 2,250 is a reasonable level or if I should have been able to achieve better than that at this point.

Today I got a little stir crazy from being at home. I have some visitors coming this afternoon (yippee!) and so I decided to sweep the front walk to clear away the needles from the spruce tree. It's not a long stretch. Nevertheless, I'm a little sore now that it's over with. Evidently my broom movements involved things they had to slice through to perform the surgery. I just stretched things, though. I didn't pull open a seam or anything. Audra keeps telling me not to overdo. Now she's right and I'm NOT happy! It'll go away, though. And probably good for me in the long run.

Surgeon appointment at 8:00 tomorrow. I'm going to continue to strive for 2,500 ml until then.

Post-op x-ray image

Today I had a moment so I took a picture of the post-op x-ray that I had taken yesterday. Of course, I don't have one of those x-ray light boxes so I hung the film in the window and backed it with some waxed paper. That seemed to work well enough. Here's a copy of the photo. I didn't realize it at first but you can click on it to get a larger version.


I don't have a before picture to compare it with but this picture obviously shows a lot of blank space where lung used to be. On one hand, I'm surprised to see that there's so much left. That's reassuring. Still, it was distressing yesterday afternoon when I finally took out the films and looked at them. A little piece of reality smacking me in the face. I wasn't quite ready for that.

On the positive side, I took a walk again this morning and that went well. My pace is picking up. That's a good development. It still hurts when I try to breathe really deeply. I'm looking forward to the day when that's no longer the case.

A minor landmark

I have my post-op appointment with the surgeon on Friday morning. Today I had a bit of a landmark and drove myself to the imaging center to get the xrays I need for that appointment. That went well enough. I had weaned myself off the narcotic pain pills - at least for a while - so that I would be able to drive responsibly. Lucky for me John had traded cars with me so I have one with an automatic transmission that I can use. The stick shift might have been a problem. I have my films and I'm ready to go. Trying to figure out if I needed referral forms in order to get these things done was no small chore.

I just got back a moment ago and I am amazed at how tired I am. It wasn't a particularly draining endeavor but it really did wear me out. I am not enjoying this part of this experience. I have occasionally felt inept in this life but I've never felt weak. I'm probably supposed to be learning something from this. I'll work on that. It doesn't really hurt, though, just a bit of aching and tightness. That has to be good.

So, it's nap time for me for a while and then I have things to keep me busy through the end of the day.

Thanksgiving

As far back as I can remember this has been my favorite holiday. There are no presents, minimal decorations, and only as much preparation as you are interested in doing. The whole goal of the day is to be with people who are dear to you and take stock of all the good things that have come to you over the year.

I have so much to be thankful for this year that it makes my head spin. What could have been a truly awful time has turned out so differently. As this day arrives I’m well on the route to recovery after surgery with a good likelihood that I’m completely done with this disease. More important than that, it is so clear to me now how surrounded I am by the kindest and most loving family, friends, and neighbors that it could be possible to have. I can’t think of anything more that I could ever need. As the time passes I will hold on to this year. No matter what comes in the future, I hope that the knowledge that I ever had a year as wonderful as this will carry me through.

I am in the middle of Thanksgiving preparations. I have hosted the dinner for my family for several years but this year we’ll be having it at John & Jennie’s house. That’s a relief. I’m not quite up to the task this year. Tom will be on hand to help get ready and to make the gravy. That’s a skill that continues to elude me.

We have a few offbeat Thanksgiving items that we roll out every year. I’ll include a photo of them here. You’ll see a crepe paper honeycomb fruit bowl. Pat bought that decades ago and it was always featured on the piano in our house at Thanksgiving. It has seen much better days. Still, looks aren’t everything. There are also some recently added paper pineapples and a turkey, plus a stuffed turkey that somehow ended up in the sacred holiday items collection.

My favorite set of items is our collection of poultry seasonings. The year after my mother died we were cleaning out the cabinet above the oven in her house and found all these containers of poultry seasoning. Evidently she bought one every year, used it for the holidays, stowed it in the cabinet, and forgot about it. In the 11 years that have passed since we found them, we’ve bought a new container of poultry seasoning every year. We label each one with the year that we bought it and we line them up in some place of honor during the meal. It’s a goofy tradition but it’s a tradition now and I can’t imagine Thanksgiving without it.

Oh, and while I was taking that photo, Sam the cat became interested in all the items on the table. Here she is investigating. She seems to be doing well, by the way. Thank you to all who were worried about her. Yet another reason to be grateful.

Happy Thanksgiving everyone!

Morning walks

Over the weekend I started taking morning walks again. I walk from my house down to the Main St. in Ellicott City, across the Patapsco River bridge and back. It's almost exactly 1.5 miles. I had been doing this to get ready for the surgery and now I'm doing it as part of my recovery program. During the day the route is busy with traffic but I go early in the morning. The roads have an entirely different character then, almost deserted. I took my camera this morning. Here's a photo.


The day before I went into the hospital I saw a blue heron standing in the river as I crossed the bridge. When Pat and I took my first long walk after the surgery we saw one in the middle of the river. And the first day I started taking the morning walk after the surgery, I saw one again from the bridge. I haven't seen one since. Not yet anyway. I can't help but wonder if it was the same one all three times. I like to think it was.

Ow!

OK, here's a tip for others in my situation. As you sit watching judge shows to pass the time of day, you're likely to begin to doze off. Avoid the urge to launch into one of those expansive, arms-over-head, cat style stretches. Dag that hurt. Don't worry, I didn't pull anything or pop a seam. I just felt the need to remark on it.

OK, just a bit of an update here. I just experienced my first post-op sneeze. That certainly woke me up. I hope that doesn't happen again any time soon!

Pain vs. Itch

I have spent the last few days on the fence. The pain pills that I have make my skin itch - a lot. This is evidently a known side effect and not some sort of unexpected allergic reaction. After a week it had gotten to be very troublesome. My alternatives are ibuprofen and other over the counter pills. They work but not as well, of course. Yesterday and today I backed off of the prescription pills and the itching slacked off too. I still take them when I really need them. Unfortunately the pain kicked up a notch or two as well. That has slowed me down a bit. Of course, I have been out of the hospital for over a week so the worst after-surgery pain has abated quite a lot. I still get jabs that take me by surprise, though, and I have to move a little more deliberately. This will pass over time.

I'm still able to do more than I ever expected to be able to do at this point. I'm dutifully taking walks and working with my breathing exerciser gizmo. It measures the amount of air I'm able to breathe in. I made it to 2,250 ml today. I was stuck at 2,000 for a long time. I was down to 250 in the hospital and am shooting for the max of 4,000. That's a lofty goal.

So, things are plodding along. Not as dramatically fast as they had been but still steadily forward.

Two big landmarks

I had two landmark events today. Jim went home. He had been staying with me since Pat left on Monday. Now I'm home alone. It's much quieter here but I think it was probably the right time. Poor Jim didn't realize that in addition to watching out for me he ended up with an assortment of cat care emergency runs to do. I'm glad he was here. I don't know what I would have done otherwise.

The other landmark is that I'm now wearing a t-shirt. This might not seem like a big deal but I had been wearing zip-up things until now since it hurt (or might hurt) to lift my arm up high. This is a happy development.

So, things continue to progress. All good news.

Delicious things

I have received several wonderful food gifts lately - some home made and personally delivered, some shipped from far away. One came packed with dry ice which I'm looking forward to playing with. They're all very welcome. It's great not to have to plan out and prepare meals. Also, the things I have received are much nicer than anything I would make for myself. Much nicer. I'm hesitant to start to list anything here for fear that I would omit someone. I am very grateful for all of these things.

OK, I'll only mention one. The folks in my department at work sent me an edible arrangement. It was so pretty that I took a picture of it on the table in my back yard in front of the red maple tree. I'll include a photo of it below.


Thank you, everyone, for your kindness!

Biopsy results are in

My surgeon called this afternoon with my biopsy results. The news is good.

The tumor was a typical carcinoid. This is what I had hoped to hear. A typical carcinoid doesn't tend to be invasive. (The alternative is an atypical carcinoid which would have been less happy news.) My initial biopsy from the bronchoscopy showed a typical carcinoid but that was with a limited sample. This result comes from slicing up the actual tumor in detail.

One lymph node was involved but that was because it was very close to the tumor and the tumor actually grew into it. It doesn't indicate that any of the carcinoid cells had escaped. No other lymph nodes showed any bad cells. This means that there's no indication that the disease has spread. I won't need to have chemotherapy or other follow-up treatments like radiation.

What a relief. I didn't realize how much this had been weighing on me until I heard the relief in the voices of my family and friends when I told them. I will now go into a life-long monitoring phase where I'll have scans and other tests at intervals to make sure that nothing else has bubbled up. Those will be frequent at first - every three months - and will become less frequent as time passes. I'll happily go through all of that.

So, another chapter closes in this saga. And happily so.

In other news.............

I'm sure you have been concerned about the $%@&! cat. It turns out that she has some sort of bladder problem - either an infection, cystitis, or a stone of some kind. Jim, who didn't realize that his offer to help care for me would involve cat health care as well, is retrieving her from the vet now. We'll have to monitor her progress to see if the antibiotics help. In the meantime, the laundry will keep running as we try to clean up the various comforters, sheets, and blankets that she has anointed.

Another emotional roller coaster of a day, with happy news at the end.

A landmark day - and the cat starts up

This time last Tuesday I was in surgery. It is difficult for me to comprehend that it was just a week ago. All of the worst of this is already behind me - I hope! So much has changed since then. So much anxiety lifted away. The general pain from the surgery seems to be going away at a steady rate. It still hurts a lot when cough. I can't say I enjoy that (which would be weird) but it is a sign of recovery so it's not bad either.

In other news, the $%@&! cat started to pee on my guest futon again. I think it's a combination of behavioral problems and urinary problems. A little blood in the urine (hers, not mine) last night. That was a first. Jim arrived to stay with me yesterday after Pat left and I was glad he was here to run us up to the emergency vet. I'll talk to my regular vet about this today. She's a sweetheart and is both very knowledgeable and reassuring. I appreciate both of those attributes. It's funny that with all that has gone on, the cat's urinary problems seem daunting to a degree that's way out of perspective. I'm glad I bought that waterproof mattress pad, though. That was a little advance planning that really paid off. We'll be spending some of the day doing laundry.

Almost time for my 10:00 pain pill booster shot. Woo hoo. These pills seem to work and they don't make me too sleepy or loopy. I'm glad of that. The doctor told me that it was important to stay ahead of the pain so I have been taking them on the schedule they recommended. I hope to begin to wean myself off of them slowly in another few days. We'll see how that goes.

Days of wonders

I have had a wonderful series of days. My only jobs for the next few days are to exercise - mostly by walking, take my pills on schedule and keep breathing. All that seems to be going well. In the meantime, I've had some visitors, many calls, and my family has been keeping quite an eye on me. John came over yesterday just to make us pancakes and Tom drove up just for the day to check in. He brought press cookies made from my mother's recipe - mmmmmm. Pat, of course, has been staying with me and handling absolutely everything that might come up. Someone asked her yesterday why she came back and she thought about it for quite a while. Then she said that she knew she could be helpful but primarily it was just important for the team of the four of us to be assembled for this. That rang true to me. I could have happily gotten by with no royal treatment (not that I didn't appreciate it) as long as I knew that my family was with me. Here's a picture of yard message that Pat set up outside my bedroom window yesterday. I love it.

I'm supposed to be walking. That seems to be going very well. Actually, I can't believe how well it is going. People have congratulated me but I can't take credit for that. All the doctors, nurses and other hospital staff seem to have done a perfect job on me. This morning Pat and I took a walk along the Patapsco river. The trail there is flat so we walked as far as seemed advisable. I checked when we got home to see that we had goine 2.6 miles. It just doesn't seem like this could be possible. Here's a picture of the trees reflecting in the river. It was so beautiful. We also saw a huge blue heron on a rock in the middle of the river. What a morning!

First night at home

It is so delightful to be home. Last night was OK. I didn't realize how handy it was to have that adjustable hospital bed. My own bed was a little difficult to deal with - at least at first. My abilities vary depending on how recently I've taken one of the pain pills. The middle of the night wasn't pretty. Luckily friends from one of my book groups gave me a gift certificate to the Sharper Image and I had bought myself a cool reclining chaise type chair from there. It is perfect for sleeping in. I spent the day puttering and talking (in brief bursts) on the phone with people - and napping.

This has been a tiring experience for everyone. Here's a photo of two of my caregivers after I got home from the hospital. I was excited to be home and they had an opportunity to relax, probably for the first time in days.

I am home

I am home. It is wonderful to be here. And I feel great - although I suspect that a lot of that is the pain pills talking.

Late night

Well, it's late into the night and I'm taking stock of the last few days. I don't think I reported that the chest tube had been taken out. That happened this afternoon. It was scarier than it was painful and I felt much better instantly. The epidural came out at the same time so now I'm on pain pills and not connected to anything. I'll probably go home Friday. Hard to believe it could be so soon.

So now here I am sitting in the hospital - stiff, sore, and slow moving with a very impressive incision on my back and minus two lobes of lung. This seems unreal. They say I should have plenty of lung left. I hope so. Now I just have to wait for the full biopsy results ro come in. No surprises are expected there but I'll feel better when I know for sure.

On the positive side, what an incredible experience this has been. Of course, I would have gladly skipped the whole thing but that wasn't one of the choices. Everyone here at the hospital has been very kind, capable and helpful. I came to the right place.

All right, off to sleep.

A burst of creativity

My brother John and nephew Patrick were by this evening. They had an attack of creativity and ended up making this little guy from an in-bed urinal,a rubber glove and some other found items. His name is Yuri. Cool ,huh?. I have great family.

I'm back

Hi, everybody. It's quiet in here early in the morning so I thiought I'd try to send out a quick message. All seems to be going well. They took out some more tubes last night. Now I only have an I.V., my epidural pain thing, and a chest tube. The chest tube's job is to drain out fluid. It's very well installed but it's stilll a little revolting. It's surprisingly thick. I'm fond of the epidural, though - plus it's in my back so I don't have to look at it.

Today I'll be walking a lot. They may also take out the chest tube if it stops draining and the epidural. I'll go to pain pills when that happens. This really does hurt quite a lot at times.

No definite word when I'll get home. That's OK with me right now.

Thanks to everyone for your comments and messages. They have given me quite a boost. OK, nap time now. Hard to believe that writing a blog post could tire a person out!

in a room

6:22 PM
Jim is moved into a private room on the 6th floor of the Nelson building. It has a
nice wide window. He had his first real food since Monday, a light dinner. We
read him all the blog comments so far, he really appreciates them.

For the move to the new room, he had to walk a few steps, and it's great that he
was able to do that already, but it and everything he's been through so far have
left him really tired. Now that he's in a real room and out of the ICU, the
staff will still be checking on him, but just not constantly, so hopefully he
will be able to get some rest tonight.

He has his fancy cell phone now, and maybe tomorrow he'll be updating this himself

Waiting for a Room

Well, it's nearly 4 pm and Jim continues to improve. He is sitting up, practicing
his breathing exercises, and hoping to eat real food tonight. The surgeon is due
in this evening. Jim really looks great and the self-administered pain medication
is keeping him comfortable. The device beeps when the medication is administered,
and like Pavlov proved, just the beeping sound seems to bring instant relief. He
is still in the ICU, but will move over to the Nelson Building as soon as a bed
becomes available. Jim is looking forward to moving out of the ICU where all
electronic devices (except those actually plugged into him) are banned. So for
now, no cell phone, no lap top, no incoming phone calls, no books on tape.
Luckily the boredom is helping him get some much needed rest!

We have been reading your blog comments to Jim, and they are cheering him up and
keeping him connected to all of you. Hopefully, he will soon be in a room where
he can post news, read comments, and make phone calls to his heart's content!

We were in there with him when the hospital docs did their ICU rounds. They
spent a lot of time discussing the patient next door, and then came to his room,
where they reviewed his chart, parameters, measurements, etc. Everything was
fine, within the right range, and they moved on after only a minute or two. They
spent a lot of time on the next room down the line though. As traumatic as this
has been for him, and it is a long road to recovery just begun, we are really
fortunate that it has started so well.

First Night Recap

7:30 AM

Jim spent a relatively quiet night. He watched some TV intermittently
throughout the night. They make him do these regular breathing
test/exercises, and one of them last night caused a lot of pain, which
was eased with medication.

This morning, he got his first sip of liquid since late Monday night.
He is now sitting up in a chair. In preparation for moving him to a
regular room today, they have begun removing some of the many tubes
and connections. He looks better, and is in good spirits. The nurses
say that he is their best patient (but anyone that knows Jim would
expect no less!)

Evening wrap up

6:20 PM

We went back in to see him again just now, and the curtains to his ICU room were closed, so we waited
outside, assuming some serious medical procedure was occurring,. Gradually, we started to eavesdrop on the
quiet voices coming from the room, only to find that Jim and the nurse were having a debate on the merits of
verious narrative non-fiction authors.

He says he is in pain, but is able to manage it so that you don't notice it when talking to him. He has a
metered release, a dose every ten minutes if needed, and that seems to really help.

He seems to be receiving great care and attention from the Hopkins staff so we're going to let him try to get
some rest, and will likely not update this again until tomorrow.

Update from the ICU

4:40 PM
We have visited briefly with Jim and he looks
great, considering all that he has been through
today. He says "hi" to everybody and thanks for all
of the prayers. He is stable, hooked up to 1000
tubes, and has ready access to pain medication.
Hopefully he will be moved out of ICU to the Nelson
Building some time tomorrow.

Post Surgery

11:58 AM

The surgeon just came out and said that the surgery is completed, and that Jim is
doing well.

The surgery took a bit longer than expected, because he had tried to do a sleeve
resection (see the October 2 entry titled "The word from the surgeon" ) but it
turned out that wasn't really a viable option, so he did have to take out the two
lower lobes of the right lung. He did emphasize that he made sure the margins
are clear. They biopsied the lymph nodes, and will get results back from that in
a week.

Jim is now in the ICU, and we may be able to see him in an hour or two.

At Hospital

7:45 AM

We arrived at the hospital at 5:20 AM. They took Jim in for pre-op, asking lots
of questions, checking, double checking, hooking up an IV, re-double checking,
asking the questions again, and about 7:20 AM took him off to start. His spirits
are good.

My big day

Well, I will be out of touch for a few days. Family and friends will be posting here with updates while I’m out of commission.

It started raining this evening. That seems like a good sign. We need rain so badly.

I feel that I should make some deeply profound statement but I’m at a bit of a loss for that at the moment. One thought does keep coming to mind. Keeping with my original vow to post what I’m thinking no matter how cloying it might be, I’ll go ahead with this now.

I have some things that I carry with me every day.

One is a small rectangular piece of muslin with a pattern embroidered on it. It’s a good luck charm that my sister Pat made for me. It’s made from muslin that belonged to my grandmother and the design comes from a book on Appalachian folk magic that she bought when we were visiting my uncle one time. She made it for me as a good luck charm when I interviewed for the job I now have.

I also carry a polished square piece of tiger eye that Sue bought for me this fall. It has an inner shimmering pattern that I find fascinating. She knew exactly the sort of thing that would capture my attention.

Just today I received a green stone that Marlene picked up on Iona. That was where the Book of Kells was created before it was taken to Ireland. It makes me think of my family’s history in Ireland and elsewhere.

The last is a silver rosary came from Jim years ago. He brought it for me from a trip to Mexico. I have been using it regularly – quite regularly recently. Strangely, I lost the rosary some time in the middle of the day today. Well, it has gotten me through a lot lately. I still suspect that it will turn up somewhere.

To me, these things symbolize my faith, my friends, and my family - both those I have now and all those who have gone before me. These are the things that have always sustained me.

I’d also like to take a line to thank all of you for your blog comments, cards, presents and phone calls. I’m very sorry for not getting back to everyone. It has been a frantic run these last few weeks. Each of these things has meant a lot to me. The list is happily too long to put down here. Besides, to mention anyone is also to omit someone and I don’t want to risk that.

I’ll finish this up with a line from the Bible. I try not to quote from the Bible because I’ve noticed that people who do are often just trying to impress others. But this line struck me one time when they read it in church and it sticks with me now. It’s from the letter of Paul to the Philippians (Philippians 1:3) and captures well enough what I’d like to say now. Paul says simply, “I thank my God upon every remembrance of you.”

I’m looking forward to seeing/talking to/emailing you all soon!

It figures

Well, my sister arrives in a few moments and I'm scrambling to do a few last minute things before she gets into town. It seems time to post something trivial and I have just the thing. For the first time in my life I'm going to have a real reason just to sit around and watch TV. I often have the TV on but I'm rarely just sitting and staring at it. This is my big opportunity. So this morning I hear that the Hollywood writers are going on strike. No daytime TV, no late night shows. It figures. I'm hoping (mostly for them and a little bit for me) that they're able to settle the strike quickly. It seems that there's plenty of money flying around in that industry for everyone to get a reasonable share! OK, off to put away laundry.

The basic schedule for Tuesday

Just in case you were wondering, here's the basic schedule for Tuesday and the days that follow.

• I'm due at the hospital at 5:30 a.m.
• Surgery is scheduled for 7:30. I'll be in the Weinberg building at Johns Hopkins hospital.
• They expect the surgery to take between 2 and 4 hours.
• After surgery I'll be in intensive care overnight.
• If all goes according to plan, I'm expected to be in the hospital for 3 to 5 days. I didn't ask if that included the night in intensive care or not. That should have me home some time Friday, Saturday or Sunday.

My sister, Pat, is coming to stay this week. She arrives Monday and will stay here until the following Monday. I should be home by then. When she leaves my friend Jim will come and stay with me for a while to make sure I'm doing OK.

I've arranged for people to post to this blog via email messages when I'm unable to do it. If you're interested in updates (and thank you in advance for caring about that) this is probably the best way to check that day.

I really have no experience in this so it's very difficult for me to know how I'm going to feel, how it's going to work with visiting, etc. Sue has offered to act as a contact point for folks. I've given her number and email to various people. Feel free to call or email my family as well. And of course, as much as I'm able after the show is on the road, I'll be taking calls and checking email - but I might not be the best point of contact right at the beginning.

Some bad days with some great things

Well, this has been a roller coaster of a week. On the bad side, I had a lot of trivial things go wrong that took up my little free time. I got a stomach virus with all the attractive events that go with that sort of thing, the nose pad on my glasses broke, my tub drain stopped up and I got a speeding ticket for going 38 in a 25 zone. Actually, the ticket was only a warning. My eyes teared up when the officer told me that. At that moment, it was just one thing too many. I was guilty, too, and was trying to figure out whether I'd be able to go to court for it. I usually drive like a slowpoke nerd so I don't have a lot of experience with speeding tickets. Work was also a challenge this week, which wasn't a surprise. I was trying to get everything pinned together before I left.

On the brighter side, I had a lot of good things happen. The folks in my department gave me a wonderful bagel breakfast by surprise yesterday, and I got a basket of my favorite candy bars (which I have had to hide from others.) Sue stopped by with some advance supplies for my recovery, too. And today, when I was really wigging out about trying to get the house cleaned and ready (as if I hadn't had months of warning about this) Jennie stopped by without warning and spent more than a few hours with me cleaning up the place. It looks so much better now and I feel equally better. Oh, and if you were wondering, I fixed the tub, had the glasses fixed and my digestion has settled down! I guess the impending reality of this is wearing a bit. As much as I'm not looking forward to it, I'll be glad when the show is on the road.