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.