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.