As the year ends

It's New Year's Eve. Wow. What a whirlwind of a year this has been. So many ups and downs. My uncle died early in January after a very long illness. In the middle of the year I got sick and spent much of the rest of the year dealing with that. In the middle of all this were some wonderful times. A great cruise with Sue, a visit to Lynn and Bill in Maine and then off to see Jim in Rehoboth. And of course, the spectacular month-long birthday celebration that finished with the trip with my family in Colorado.

This year is ending with a lot of holiday hubub. I haven't taken time, as I had hoped to do, to reflect on all that has happened. I have learned many things - some important and some trivial - that will stick with me. Some of them are..

• Being sick didn’t cause me to grow into some wise, saintly, ever-positive person. However, it did give me a much stronger motivation to try for that.
• My family and friends will always be there for me.
• My breathing is really not going to be as good as I had hoped. It will take me some time to get used to that. I will still be able to do everything I need to do. Some of it might just not be as easy as it had been.
• When I retire, I'll have to have a definite plan, otherwise I'll end up watching TV all the time.
• If I wait until I feel great or until everything is right to try something new or difficult, then I'll wait forever and never accomplish anything.
• They tell you that you’ll lose weight when you have surgery but you can’t count on that. Time for yet another New Year’s resolution in that direction.
• I will try harder than ever now to spend more time on important things.
• I will work to remember daily how fortunate I have been and will try to be worthy of that good fortune.

Yuri goes cool

Tom came up on Saturday. When I wasn't paying attention, he gave Yuri a new, cool look with dark glasses and some metallic tape on his head fronds. Yuri continues to do remarkably well. His head is getting a bit spongy now but I think he'll still be with us for a while. Here's a photo of his new image...

Holiday rush

Wow. It has been the usual holiday rush of parties, dinners, meal preparation, and visits to family and friends. It has been wonderful. The days have been long, though and like a four-year-old I have had times when I've gotten tired and cranky. I swore to myself that I wouldn't let that happen and I'm very sorry that I failed. Some holiday seasons just come and go but I know that this will be one that I'll remember. I want to make sure that they're good, festive, and happy memories for me and for everyone else.

A Treasured item

It's hard to believe that it's Christmas Eve already. These days are flying by. Pat and Barry are here for Christmas and Pat and I have been working along in the kitchen all day getting ready for meals this evening and tomorrow.

I'm including a photo of one of my most treasured possessions. These are the measuring spoons that came from my mother's house. As far back as I can remember, the food preparation for every holiday, celebration, or family gathering involved these spoons. It's funny to think of them as one of the great constants in my life but they are, in their way, a witness to most of the landmarks on my journey so far. It cheers me up every time I see them in the kitchen drawer.


It helps that they're probably the most useful measuring spoons ever made. They have nice long handles and rectangular bowls that make it easier to reach into small boxes and bottles of ingredients. They're not available any more but they turn up on eBay every now and then.

A couple of quotes for Christmas

Christmas is approaching at a breakneck pace. I've been doing my best to get ready and I'm not doing such a hot job of it. As always when I need a booster shot of holiday spirit, I re-read A Christmas Carol by Dickens. It has one of my favorite passages about the holiday. I also love the carol It Came Upon the Midnight Clear. The third and fourth verses - which nobody ever sings - are my favorites. Those two items usually do the trick for me. Here they are...


From A Christmas Carol...

"There are many things from which I might have derived good, by which I have not profited, I dare say," returned the nephew. "Christmas among the rest. But I am sure I have always thought of Christmas time, when it has come round--apart from the veneration due to its sacred name and origin, if anything belonging to it can be apart from that--as a good time; a kind, forgiving, charitable, pleasant time; the only time I know of, in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely, and to think of people below them as if they really were fellow-passengers to the grave, and not another race of creatures bound on other journeys. And therefore, uncle, though it has never put a scrap of gold or silver in my pocket, I believe that it has done me good, and will do me good; and I say, God bless it!"

From It Came Upon the Midnight Clear...

O ye beneath life's crushing load,
Whose forms are bending low,
Who toil along the climbing way
With painful steps and slow;
Look now, for glad and golden hours
Come swiftly on the wing;
Oh rest beside the weary road
And hear the angels sing.

For lo! the days are hastening on,
By prophets seen of old,
When with the ever-circling years
Shall come the time foretold,
When the new heaven and earth shall own
The Prince of Peace, their King,
And the whole world send back the song
Which now the angels sing.

(By the way, you can read or download full text versions of A Christmas Carol from Project Gutenberg, one of the coolest sites on the web, if you ask me.)

A Christmas pick-me-up

People who have been reading this might remember Yuri, the little guy that John and Patrick made from a rubber glove, a plastic bed urinal, and a few found objects when I was in the hospital. Believe it or not, he's still going strong after 6 weeks. I had to re-tape his head to his body a couple of times and re-attach an eye now and then. This morning I fitted him out in a little Santa hat and took a photo. Weird, I know but it gave me a boost and after that last post it's clear that I could use one. Here's the photo.....

Down time

When I started this blog I decided that I'd write whatever was going on so I'm trying to stick with that. Lately, I've been going through a bit of slump in my positive attitude. From what I understand, a bit of a depressive episode is fairly typical after something like this. I think it's compounded a bit by the pressures of the holidays and assorted challenges at work. Lots of things to be handled and decisions to be made. I have been through things like this before. We all have. It's just something that needs to be lived through until it passes. I'm sure that either the arrival of Christmas or the calm after the holiday season will trigger an upswing. I'll just keep doing the show until that happens.

Christmas giving

This evening I was neatening up the house to get ready for Christmas and I collected together all the storage containers from the food that people brought for me. It's an astounding array.

It was so wonderful not to have to worry about meals when I got out of the hospital. I am very grateful for that. I'm also thinking of people who are not lucky enough to have so much support. My friend Michael works with an organization called Moveable Feast. They deliver meals to people with HIV or breast cancer who really need the help. I will be making a donation to them in appreciation for all that my friends and family did for me. I'm hoping that others who might read this will consider doing that as well.

Looming holidays

All is continuing to go well but I am learning that it's not ideal to be coming out of surgery recovery right into the holidays. There is so much to do and not a lot of energy to do it with. I'm pretty much spending all my energy just trying to keep up. It is annoying to get tired so quickly. I know that's to be expected but it's still a challenge.

I had a busy day yesterday and today my side hurts. That's typical. It's not nearly as bad as it had been in the past but it still holds me back a bit.

I'm spending the day baking. I have some cookie plate gifts that I want to finish today so that I can deliver them. Once I get that done, I can clean up the house. The place looks like a tornado blew through it. I'll feel better when that has been accomplished.

First week back at work

This week took me by surprise. I don't know if it was the leaf and pine needle raking on Saturday or just the general increased level of activity but this one was a challenge. My side ached almost all the time, sometimes quite a lot. I hadn't expected that. I had not believed that sitting at a desk could be tiring but it was.

I did finally get the furnace fixed. That's a relief. And I managed to shovel the snow off the front steps on Wednesday. That's also a good sign. I'm just a little disappointed that it still aches so much at this point. I realize that I had unrealistic expectations but it hasn't been fun.

I realize, at this late date, how much a difference it makes in my mood when I'm tired. It's easy to be cheerful when you have plenty of energy. It's more of a challenge when you're worn down. This is something that a lot of people probably already knew but it was news to me.

I took it easy today and I can see that it really helped. I baked cookies, did a little laundry, and took a nap under my heated electric throw that Sue gave me. I really enjoyed the nap. And so did Sam the cat, as you can see.

Here's a photo. It's the best could get with my phone camera. Click on it for a larger (but not a higher quality) version.

The big sleep

Wow. People told me that I would be tired when I went back to work but I didn't get it. When I got home last night the only thing I accomplished was to heat up some food from the freezer. I still have a few items left that people brought to me and I was very grateful for them last night. At about 6:30 I leaned over and dozed off on the couch. Eleven hours later I just got up from the couch and am starting the new day.

Just enough time to pay a few bills, take a shower and iron a shirt before I head out for work. I hope to have more energy than this soon. Of course, yesterday was four weeks exactly from the day I had surgery. I think all is going very well.

Today we may get snow. I hope so.

Murphy's law

Yesterday at work turned out to be a short day - and not for health reasons. After I was home for a solid month, my furnace acted up on the Sunday before I was supposed to return to to work. I had to leave mid-day to go wait for the repairman. That worked out OK and I have reliable heat again - although I still have to schedule yet another appointment for a little follow up work on the furnace.

All in all, not a bad day. We'll see how today goes.

Overpowering gratitude

Today was my last day of home duty before heading back to work. I have spent the last couple of days trying to do as much as possible so that I'll be ready to hit the road tomorrow. As a result, I'm exhausted and very sore but that's not bad news.

I have been out of work for four weeks. Just one month. The surgery, the hospital stay, the struggling to breathe deeply without great pain, are all in the past. It hasn't sunk in yet. I can't bring myself to drop my guard and accept that this show might actually be over. I guess that will come over time.

As this day ends, what I'm feeling is an overpowering feeling of gratitude. Gratitude for all of the kindness and support that has come my way. For my family, all of whom have shown nothing but love, kindness and patience. For my friends, co-workers, and neighbors, who have been an extension of my family and have treated me like I am a part of theirs.

I thought I might take a picture of all the cards and food storage containers that I have received and post it here. I set it up but it was such an astounding display that I was embarrassed to go through with it. If I counted in all the phone calls, emails and blog comments I've received, it would be truly an embarrassment of riches.

This year had a very difficult beginning as my uncle, who had been sick for many years, died early in January. Very shortly after that I got sick and stayed sick until I launched into the long diagnostic process that stretched from July through mid-August when I got the news that I had a malignant tumor. If this were a movie, the rest of the year would be a quick montage of doctor appointments, painful phone calls, hospital stays and assorted other unpleasant things. What I remember, though, is the outpouring of love and support that I have received. As this year draws to an end, I am grateful to have such a wonderful group of people to surround me. It's difficult to think that having had a disease such as this could ever be considered a positive experience but for me it truly has been.

I am constantly aware that this could all have progressed very differently. After that initial bad news, everything has gone as well as it was possible to do. I know my path could have developed very differently. I hope to do a good job of whatever comes, but I am so relieved that I have not been tested more than this.

Through all these months I have tried to learn from what has been set before me. If I can hold onto all that, then this could prove to be one of the best years of my life.

Getting back into the swing

I tried to make today as much of a business-as-usual day as possible. I started the day with food shopping and then my brother John and his boys Joe and John came over to help me rake leaves and pine needles. I was able to get more done than I expected to do but they put me to shame. It was great, though to actually do something. I'll pay for this with soreness tomorrow. I'm actually paying for it now but I'm hoping that a hot bath will help with that.

Tomorrow we're expecting sleet and then rain through the rest of the day. It's great to know that the yard is cleaned up. I'll enjoy looking out at it from the comfort of my cozy warm house!

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.

Happy Halloween

Well, it's Halloween. I'm trying to be on the ball with this sort of thing so I carved pumpkins for the front of my house. I think they came out pretty well this year. I'll include a photo of them all assembled side by side. It's not ideal but it's the best I could get yesterday evening.

This has been an OK week. I thought I was getting sick with a cold and that had me worried. I don't want anything to come up that might make the schedule change. It seems to be going away, though. That's a break.

I'm having a little trouble concentrating on stuff that I really need to get done at work. I think I'll have enough pulled together so that I won't leave anything huge hanging undone. I hope so anyway.

Well, happy Halloween everyone.

Passed my pre-op physical - pretty much

I had my pre-op physical today. I passed - unless my blood tests come back with some surprises which I don't think will be the case. My primary care doctor is truly a kind man. I'm grateful to him. If he hadn't pressed for a CT scan for me earlier this summer my tumor never would have been spotted. When in his waiting room I have often noticed how he took extra steps to confront insurance companies and bureaucracies to make sure that his patients got the care that they needed. This impressed me but I never thought that I would be one of those people. Today I thanked him - more than once - for having done that for me as well. I was surprised at his reaction. He brushed it off as being part of his job. Not unkindly, but in a self-effacing manner. I have taken care not to identify anyone by name in the posts I've made here. Internet-o-phobia and respect for people's privacy are the motivations there. But call me if you're looking for a doctor. I have one to recommend.

Oh, by the way, it seems I have some old-guy issues that will need to be addressed at some point after all this is done. I have a hernia. Grrr. Not a big one. I think it developed from being more than a little overweight combined with all the coughing I did this summer. Yippee. As if this surgery isn't enough. I get to have something much more minor to look forward to some time in the future.

On another note.........

This has been an odd day. I keep a spiral notebook so that I can write down whatever I might have to remember when I'm in assorted doctors' offices. I was really on the ball at work this morning and congratulated myself on my efficiency. When I arrived at the doctor's office for the physical I realized that I left my illness notebook at work and my mobile phone at home. I just might be over the top with things to remember to do. Luckily I have lists in my currently-at-large-but-I-hope-is-in-my-office notebook that should keep me from missing anything too critical.

And one other thing.....

The people in my department at work have been great. They have been very quiet about it but today I finally realized that they had been quietly anticipating things that are likely to come up while I'm away. I wouldn't have such a clear mind about skipping out for survery if I didn't know that they were ready to step up and handle whatever might develop in my absence. I am very grateful for that. When I think about it, things usually go more smoothly in the department when I'm not there. Hmmm..........

Two weeks to go - denial or a reasonable approach?

Two weeks from now, if all goes according to plan, I should be out of surgery. It seems as if this has begun to loom all of a sudden.

A couple of people have commented on my positive outlook and have asked me if I'm in denial over this. I've thought about this a bit and I really don't think that's the case. But for the record, let me just say that I really don't want to do this and I wish it would go away. Every now and then I imagine that I'll get a call saying that the test results were a mistake and I'm off the hook.

When I first heard the words "abnormal CT scan" I think I did go through a lot of those typical stages of denial, bargaining, etc. As soon as I got home I started cleaning out drawers, thinking that if I was going to pop off shortly I didn't want anyone else to have to do that. Even as I was doing it I knew it weird. Still, it was a lot less weird than some things I could have been doing and it made me feel better so I kept at it for a while. Not long, though. Most of the drawers in my house are still crammed with who-knows-what!

Since then I've been trying to get ready as best I can. By all reports, the time after the surgery is supposed to be very painful but honestly there isn't a whole lot I can do about that. I'm doing what I can, though. Every morning I take a long walk like my surgeon recommended so that I can improve my lung capacity and general fitness. I've laid in a supply of warm shirts that zip up the front so I won't have to work with my usual pullover sweatshirts. I'm in the process of cleaning up the house, weeding down my work email inbox and trying to get my projects at work in order so that I can pass them along. I'm also reading up on wills, living wills, advance directives and that sort of thing with the goal of having all that in place before I go into the hospital. (In my experience, the more prepared you are for something the less likely it is to happen so this may be a bit of a defense mechanism, too.) And finally, I did buy a new, bigger refrigerator. That was an indulgence. My old one was small and rust was coming through the paint. I thought I'd get a larger new one so that I'd be able to accept all the fabulous and appetizing things that my family, friends and neighbors just may be sending my way while I'm laid up.

One last thing about my situation in comparison to ones that others have faced. I count myself lucky because, if all turns out as expected, I am very likely to be clear of this after the surgery and not face recurrence, chemotherapy, radiation or some other form of follow-up therapy. That makes this much easier for me. I have friends who have had cancers that require much less dramatic surgery but who have had to face the looming threat of recurrence, spread of the disease, etc. At least so far I haven't had to deal with that. I had some very dark times in the days before my biopsy results came in - and I'll probably have more scary moments when my post-op biopsy results are looming. But that will have to wait for later. I'll work in the meantime on the things over which I have some control. That helps a lot.

Oop, OK, one more thing. I took my car in for maintenance this morning and was on the road as the sun was coming up. It was a spectacular sunrise today. That certainly made it easier to cough up the $$ for the work on the car!

Being the sick person

More than once I've been in the situation where I was one of the main caregivers to someone who had a serious illness. When I found out that I had this tumor, I realized how unprepared I was to be the patient instead. It wasn't really more scary but it seemed much more difficult and complex. Recently, though, a few people very dear to me began to face health problems that could turn out to be serious. What a feeling of helplessness that brings on. It can be much harder to be the person who's trying to help when you don't know what to do or when there isn't really much you can do. When you're the sick person you're in a position of some power. Within your physical limits, you have the ability to make things easier - or harder - for yourself and for those around you. I hope I'm doing and OK job of that.

Reflection and the pervasiveness of love

After the frantic pace of the last few weeks I’ve been trying to level off in preparation for my big surgery day and the recovery to follow. When all this started I was determined to devote at least a bit of my time to prayer and reflection. I haven’t been so good at that lately so I’m working to get back on track – with thinking about things and with living life a bit more fully. While pursuing that goal this morning I had a realization that took me by surprise. Prepare yourself. This may be my most sappy post so far.

I have said many times here that I have been very lucky to have such a wonderful group of family, friends and co-workers who have been on hand to help me through all of this. When I was thinking about that this morning it occurred to me that this has always been the case for me. Remembering back as far as I can (which is pretty far at this now-advanced age) I can’t think of any time in my life where I doubted that I was loved. I can't say that I took this for granted but I never had cause to doubt it. It never occurred to me that everyone else might not have had the same experience or background. I see now how profound an influence it has been. It lets me move forward into things with confidence. More important, I believe that what good I have been able to do in this world was made possible by that foundation.

So, thank you once again to everyone for giving me this greatest of gifts. I will do my best to deserve it and return it back to you.

"Why me?", fatigue, and a great birthday surprise

Yesterday morning really for the first time I had a big attack of wondering why this happened to me. It didn't last long but it took me by surprise. I had been very busy for the last few weeks and I think it was the fatigue talking. It doesn't take long to realize how pointless thinking like this can be. It did happen and it's not going to go away by itself (although I've daydreamed about that.) The only thing I can do is take it on and do the best job I can. The woe-is-me attitude dissolves away pretty quickly when I'm reminded of how much worse it could be and how lucky I am to have such legions of supportive people around me. This came in loud and clear last night. One of my book groups got together and had a birthday event for me along with our meeting. This year has been the birthday party that never ends. They had wonderful food, a cool giant chocolate chip cookie (home made) with candles and they gave me a snappy gift card and catalog for the Sharper Image. I'm going to have fun with that. So, after a bit of a dip I'm back on track. Thanks everyone!

The word from the surgeon

Well, I had my meeting with the surgeon this afternoon. It went better than I had expected. He’s a very nice man and seemed very confident and considerate at the same time. That seems like a good combination .He also said that he saw lung carcinoid tumors like mine about once a month so he has some experience with them.

Here’s what I learned…

The surgeon will do a bronchoscopy to see how things look from the inside. If possible he will do something called a sleeve resection. That’s where they take a section of the airway and re-attach the ends of the pieces. This is preferred because it preserves all the lobes of the lung. Whether or not they can do that depends on the position of the tumor. From what I’ve heard about the position of my tumor, I probably won’t be a candidate for this but I’m very glad that it will be considered. My tumor, it turns out, is about the size of a marble. If a sleeve resection isn’t an option, then he’ll need to remove one or two of the lobes of the lung. The primary goal is to make sure that the ‘margins are clear’ – meaning that all the malignant cells have been removed. They’ll test lymph nodes during the procedure to make sure that there has been no spread. The surgery could take two to four hours. The American Cancer Society has a good web page about carcinoid lung surgery You can also look up “sleeve resection on YouTube but the video looked too unpleasantly detailed for me to want to watch!

The surgery incision will be horizontal along the line of ribs under my right arm. He’ll need to cut through one muscle and some assorted other tissues and then he’ll spread the ribs open. He said that they try not to break any but that it might happen. This sounds unpleasant but it is much better than what I was imagining. I thought he would need to cut vertically and spread the cut ribs open like a rack of lamb.

I’ll be in the hospital for three to five days. The first day will be in the intensive care and then I’ll be home recovering for three or four more weeks. I thought it would be worse than that so this seems like good news to me. I won’t need help doing any sort of personal care stuff, which is also happy news. I’m encouraged to be as active as possible during this point without lifting anything heavy or doing anything too strenuous. I’ll stick to this. I want to be mobile but I don’t want to pop a seam. By all reports this will be a painful process but I’m assured that I’ll get enough pain pills to get me through it.

The pathology report on the tumor will be back in about a week after the surgery. There’s a good probability that surgery will be all I’ll need to have. It’s unlikely but if other treatment is needed it would most likely be chemotherapy. I’ll go for a follow-up appointment in three weeks after the surgery. After that I’ll go every month for a while, then every three months and finally every six months until five years has passed.

So, I have just over a month until November 6 when the show really starts.

Initial surgeon appointment changed

I had a call from the surgeon's office this morning. My initial appointment has been changed to Tuesday, Oct. 2 in the early evening. That's a few days earlier than had been originally planned. I'll need to start writing down my questions now so I don't forget to ask anything.

A day in the mountains

We had a spectacular day yesterday. We started the day in Rocky Mountain National Park hiking a trail that begins at Bear Lake, passes Nymph Lake and Dream Lake and ends at Emerald Lake. The weather was perfect and this happens to have been the best weekend for viewing the yellow aspen leaves. The hike was several miles. We started high up and climbed a total of about 600 feet to somewhere around 10,000 feet. The air was beautifully clear and the views were amazing. After that we took a drive up the Old Fall River Road to the visitors center at 12,000 feet and then drove back down Trail Ridge Road to Estes Park for dinner. A great day. I'm including two photos.

One is a picture of Long's Peak from the Trail. This was the first 'fourteener' that I ever climbed in Colorado. That was several years ago.


The other is a picture of all of us sitting in front of Bear Lake at the end of the hike.


This is being a great trip.

A wonderful day

What a wonderful birthday. The trip to Denver went without a hitch. When we got here they surprised me with lunch and a fabulous present - a hammered dulcimer. I couldn't believe it. I've always wanted to learn to play one. It's beautiful. I was thunderstruck. I cannot describe how lucky I am to have been given the family I have. We're off to dinner now. What a day!

Happy birthday to me

OK, it's official. Midnight has arrived and I am now 50 years old. I'm including a picture that Sharyn sent to me today. Cool, huh?

I'm leaving tomorrow for a trip to Colorado. It's a work trip but I've added some days in advance to visit my sister and brother-in-law who live outside Denver. My two brothers and sister-in-law are coming along to make a birthday celebration out of it. I'm looking forward to it a lot. It will surprise nobody that I'm up late packing, catching up on email, etc. I just finished laundry and should be done with the whole packing chore in another hour or so. There was a birthday surprise gathering for me today at work, too. This has been a great stretch of days! OK, off to polish shoes, fold clothes, check the pack list, write up cat care instructions, blah blah blah. Can't wait until I'm on that plane!

Many kind surprises

Just in case I haven't mentioned it a bazillion times already, my birthday is coming up shortly. I will be 50. I'm OK with this since I don't have to say that I'm OVER 50 until next year. This past weekend I went to a meeting of one of my book groups and also to a small fund-raising dinner for the Maryland Library Association. At both of those I was surprised with cake, wine, and all manner of good wishes. I continue to be astonished by the warmth and kindness of those around me. Knowing these people as I do, this shouldn't have surprised me in the least. Still, the fact that I didn't see it coming made it all the more wonderful.

Surgery scheduled - November 6

OK, I got the call from the surgeon's office first thing this morning. Things are a bit farther in the future than I had hoped but at least it's on the books. Here's the scoop...

I have a clinic appointment with the surgeon on October 5 and the surgery itself is scheduled for November 6. I'll have to have some pre-op testing done but I'll need to work that out through my primary care physician. So, there we have it. There's a possibility that the surgery will be moved up if someone cancels but I can plan for November 6 in the meantime. I'm glad to have this all set up! I'll get more information about the surgery, what's involved and how long the recovery will be when I go in for that October 5 appointment.

Birthday dinner

Mary Lou, Cindy and Sue took me out to dinner last night for my impending 50th birthday. I had a wonderful time - and raked in some good gifts, too. Among other things, they gave me a portable DVD player which was a very welcome present. I'm sure I'll be able to use it. I have already played with it, of course, and it's really cool. Yesterday had been a challenging day at work so this came at a great time. I'm very grateful to them. I'm looking forward to playing with all my new stuff as well!

A positive attitude and two poems about hills

They say that having a positive attitude is important when dealing with this sort of thing. I'm generally fairly good at that. I can tell that it's important for the people around me as well so I'm making an effort to be as positive about this as possible. Some times are more challenging than others. I suppose that's typical.

I was talking yesterday with a friend who has had something similar. We agreed that even the potential for scary news causes you to look at everything with more appreciation and perspective. That is certainly true.

All of this made me think about two poems with similar themes but very different attitudes. I'll include them below. The first is Up-Hill by Christina Rossetti. I learned this one years ago from my friend Kay who recited it from memory. It has a resolute and positive tone. The other is The Long Hill by Sara Teasdale and carries a feeling of fatigue and capitulation. I learned of Sara Teasdale when my friend Nancy recited her poem Wisdom to me from memory. I think I'm doing a good job of it so far but I'm going to work to keep on the Rossetti side of things and keep those Teasdale times to a minimum.

Up-Hill

Does the road wind up-hill all the way?
        Yes, to the very end.
Will the day's journey take the whole long day?
        From morn to night, my friend.

But is there for the night a resting-place?
        A roof for when the slow dark hours begin.
May not the darkness hide it from my face?
        You cannot miss that inn.

Shall I meet other wayfarers at night?
        Those who have gone before.
Then must I knock, or call when 'ust in sight?
        They will not keep you standing at that door.

Shall I find comfort, travel-sore and weak?
        Of labor you shall find the sum.
Will there be beds for me and all who seek?
        Yea, beds for all who come.

- Christina Rossetti

The Long Hill

I must have passed the crest a while ago
And now I am going down--
Strange to have crossed the crest and not to know,
But the brambles were always catching the hem of my gown.

All the morning I thought how proud I should be
To stand there straight as a queen,
Wrapped in the wind and the sun with the world under me--
But the air was dull, there was little I could have seen.

It was nearly level along the beaten track
And the brambles caught in my gown--
But it's no use now to think of turning back,
The rest of the way will be only going down.

- Sara Teasdale

Chest CT scan video

This is probaby in bad taste but I'm doing it anyway. I had the CD with images of my CT scan and I was curious if I could make them into some sort of animation. I did that this afternoon. I was just going to post an animated image but then it would be playing whenever people loaded this page. Some people might prefer not to see that so the video link seems better. Still, I had never seen one of these and I thought it was interesting.

Anyway. Here's one of the three views of the chest CT scan I had at the end of July. It shows views going from my sternum down through my backbone and my flabby, I mean well-muscled, back.

At this quality it doesn't show any evidence of the tumor. Still, I thought it might be interesting to some. Click the play button if you'd like to view it. Or skip it if you aren't intrested in this level or type of info.!

Document Delivery

I picked up the films yesterday and dropped them off down at Hopkins today. They told me that I should hear something from them Monday or Tuesday. Another Friday arrives and I can go into the weekend knowing that I've made some progress. That's a very good feeling.

On several occasions I've been in places where people have been picking up, carrying or delivering their radiology films. I've sometimes accompanied people who were doing that. It has always struck me to see them forging along to someone that might help them. They seem brave, resolute. They bring out a feeling that's both hopeful and forlorn. Now I'm in the club, too, and from this side it feels pretty much the same way.

On a brighter note. Seton Imaging was able to put my CT scan images on a CD. Of course, I made myself a copy. If I get a chance, I'll see if I can find a way to post some sort of "3-D trip through Jim's torso" animated image. That would be an interesting challenge.

Records roundup

No more news.

Yesterday and today I talked to assorted people trying to get the records that are needed sent to the people who need them in the format that is required. Hopkins needs my medical reports plus my CT scan results. The reports were faxed once but didn't seem to make it. They're being sent again today, I hope. I'll pick up the films tomorrow afternoon and will deliver them to Hopkins on Friday morning. The films will be on CD - I hope - but Seton Imaging couldn't verify for me whether or not they'd be in DICOM format. That would be compatible with the system that Hopkins uses in their operating rooms. So far all the appointments, discussions, tests and reports might not have been good news but they all went well. This is the first red-tape style roadblock I've hit. I guess that's better luck than average.

Some progress

I have been referred by a friend who is an associate professor at Johns Hopkins School of Medicine to a thoracic surgeon at Hopkins. My medical records and information are being sent to him. He'll review the information and will suggest a course of action.

It is good to be going into the weekend having made this progress. Whew!

No surgery news yet

OK, this post will be labeled 'medical update' but the only news is that there isn't any news. I'm waiting for recommendations for how to proceed with the surgery. I do have two surgeons available who can do this but want to get a little expert advice from a friend who is very much in the know about this sort of thing. If I haven't heard by tomorrow then I'll call and see what I can find out. I'm a little tired of thinking about this at the moment so I'm letting myself off the hook until then.

Unexpected Kindness

Several times over the last few days people have come in to see me to tell me about their experience with cancer or surgery and to offer information and support. I had not expected this and am very grateful to them. People really have been remarkably kind. Choosing "Not By Myself" as a blog title seems to have been the right move for sure.

Poem - Indian Summer by Sara Teasdale

This evening I drove home by way of the back roads. I had been up early this morning to watch the lunar eclipse. Several things came up and I was later than usual leaving work. Several times on the drive home I came upon
spots that had that typical look of early autumn - green leaves, yellowing fields, and light at a sharper angle than you see in mid-summer. It was so beautiful. It reminded me, out of the blue, of a poem by Sara Teasdale. Indian Summer. I love this poem - particularly those last two lines. They create such a compelling image. And here it is for you to read:

Indian Summer

Lyric night of the lingering Indian Summer
Shadowy fields that are senseless but full of singing.
Never a bird, but the passionless chant of insects,
Ceaseless, insistent.

The grasshopper's horn, and far off, high in the maples
the wheel of a locust leisurely grinding the silence
Under a moon waning and worn and broken,
Tired with summer.

Let me remember you, voices of little insects,
Weeds in the moonlight, fields that are tangled with asters,
Let me remember you, soon will the winter be on us,
Snow-hushed and heartless.

Over my soul murmur your mute benediction
While I gaze, oh fields that rest after harvest,
As those who part look long in the eyes they lean to,
Lest they forget them.

- Sara Teasdale - from Rivers to the Sea

PET Scan Results

My PET scan results came back with no other evident locations of tumors. That's good news. It also showed low activity in the location that we do know about. That's good news, too, since it appears that this thing isn't growing at some huge pace. So, good news today. I may still have to go for the octreotide scan but that recommendation will be left for the surgeon to make. No matter what these test might show about other locations (which are unlikely to be there) the surgery will need to move ahead.

I have spoken with a friend of mine at Johns Hopkins hospital who is going to check with some colleagues of his. He'll give me an opinion on how I should proceed with the surgery. I'm hoping to hold onto as much lung as I can while still getting completely rid of this thing. I'm very fortunate to have someone that I can appeal to for help and expertise with this. It's good to be able to be involved in the surgery/surgeon choice but it's also scary. And I thought that buying a car was a difficult decision.

My blog title

I chose "Not By Myself" as my blog title because I have had so many people with me as this whole thing has been developing. I live alone with a fairly loopy cat. Still, my family and friends have been so kind to me. I feel that I'm just one part of a team. I'm very, very grateful for that.

I had considered several other blog names. Most of the hopeful sounding ones had already been taken - and they all only had one post. That was a little unnerving. I started this blog out with the title "Malignant Me" since a carcinoid tumor does in fact count as a malignancy. That was amusing but didn't seem like it would be what people would like to see in the long run. It was catchy though, and now that I've renamed this blog it's available again.

Background - what's happened so far

As I said, I hoped not to get to this point. Consequently, I didn't make good notes about what happened up to this point. Here's my best recap of the events that led up to today...

• July 1, 2007 - I got a miserable cold that led to some sort of sinus infection. It lasted for weeks and seemed to be going away. After a family reunion on July 14, I started to get a fever.
• July 16, 2007 - I finally gave in and went to see my doctor. He prescribed antibiotics and sent me for a chest x-ray and blood test just to play it safe.
• July 17, 2007 - My doctor called to say that I had pneumonia. This was a surprise since I felt lousy but not that lousy! He told me to stay home for a week. That seemed like an eternity. It was also my first taste of how kind people can be when you're sick.
• July 23, 2007 - Back to work feeling much better. I went for a follow-up x-ray.
• July 24, 2007 - X-ray showed residual shadowing (or some words to that effect) that made my doctor uneasy. He said that the report suggested another x-ray but he wasn't comfortable with that. His reasoning was that if the first one didn't show anything conclusive, then a second one wouldn't either. He recommended a CT scan.
• July 31 2007 - I went in for the chest CT scan with contrast. That was a snap. I was lucky enough not to have any reaction to the iodine.
• August 9, 2007 - The CT scan results came back 'abnormal' with a mass in my right lung. My doctor set up an appointment with a pulmonologist with the suggestion that I have a bronchoscopy with a biopsy.
• August 15, 2007 - Met with a pulmonologist who showed me the scan results and scheduled the bronchoscopy.
• August 17, 2007 - I went for the bronchoscopy. My friend Sue went with me for that. That couldn't have gone better. It was a little stressful, of course, but everything progressed according to plan. I did get a chance to see the pictures of my lump. It's right in the airway of my right lung where the tube branches to feed air to the middle and lower lobes. Sue and I agreed that it didn't look scary. We were both imagining that the camera would show some science fiction sort of malevolent looking thing with an eyeball looking back at you.
• August 23, 2007 - My brother John and I went to get the news. I found out that I have a lung carcinoid tumor. My pulmonologist had suggested at the beginning that this might be the diagnosis because of my medical history and other symptoms. Carcinoids aren't that common so I was impressed that he had figured this out. I need to have surgery to take out the tumor. Carcinoid is technically cancer but it's not nearly as scary as most other forms of cancer. It looks like I'll have to have a lobectomy where they take away one or two lobes of my right lung. Ugh. The tumor is in an inconvienient location in my right lung just at the spot where it divides to supply the middle and lower lobes. This will most likely involve real surgery - going through the ribs, big incision, etc. While this all sounds scary and complex - at least it's not one of the worse forms of cancer. Surgery may well clear up the whole thing - that's good news.
• August 24. 2007 - I went for a PET scan to make sure that there are no other sites where I have carcinoid growth. It is likely that this will come back clear but, as they say, you never know. I'll be glad when this part is over. It's just possible that I'll also have to go for an octreotide scan or OctreoScan. This is something that's particularly well suited to locating carcinods. I don't know yet if that will be needed. Tomorrow will tell. Now I have to do some research and choose a surgeon. If these tests come back with no surprises, then it'll be time to have the surgery.

Here goes...

Well, I had actually hoped not to get to the point where something like this blog would be needed but that's not one of the options. I have had friends who have been in similar situations and have sent out email updates. I'll try to do that, too, but I thought the blog would be helpful. It will hold the info in one place in case I need to refer back to it and it will give people one address that they can check rather than filtering through the bazillion email messages we all seem to get daily. I'll probably have a post-storm at the beginning as I catch up on what's been happening. Some of this will be for others to check. Some of it will be just an outpouring of thoughts that will be for my benefit. I'll label the posts so that readers will be able to use the category/label list to find posts of a particular type.