What a Wonderful World

The simple enjoyment of everyday life

One step forward, one step back

Filed under: Blogroll, cancer — tjs at 1:23 pm on Friday, April 13, 2007

Just spoke to Dr. Schlenk. The tumor board reviewed my case yesterday. Short version “We are all scratching our heads.”

Path report called it (sure I’m mangling this a bit and I’ll have the written report Monday and clarify) a Fibroblastic Myofibroblastic Proliferation. They think it’s a Myofibroma. That’d be good. However, the surgery was risky and to prevent risk of stroke etc he didn’t dig deep and there’s a chance he just got scar tissue (which the above would show as) and not the actual tumor it surrounds. Part of what leads them to this conclusion is that it was so hot on the PET scan.

So, new MRI next week to check against the baseline. Then they are pondering another more invasive biopsy surgery that’ll have to include a surgical Ear Nose and Throat team.

So the battle to figure out what it is so treatment can begin continues. The battle against stress is beginning to really show on the whole family.

A little info

Filed under: cancer — tjs at 8:08 am on Wednesday, April 11, 2007

Last night as I sat in my normal fret about this whole thing mode a possible scenario came to mind. The results of my pathology came in last Thursday or Friday and they need to be presented to the tumor board to decide what to do next. Not a scenario I was happy to think about.

Just got voice mail from someone at the clinic. She didn’t have my results, not in the computer yet. But she did know that either this week or next my case was scheduled for the tumor board. Ugh. Now this doesn’t rule out anything good or bad I don’t think (well maybe the best case has been ruled out).

The tumor board meets every Thursday to discuss cases. So I’m hoping I’m on the agenda this week and maybe will hear something in the afternoon.

So all I really know now is there is a tumor (we knew that) but don’t know if it’s malignant or not. Status quo continues as the family continues in a hunkered down and wait on the news mode.

[Addendum] Lynette talked to the nurse and got a little bit more information. Turns out I was on the agenda for last weeks tumor board but at the end and they have a time limit. That’s why it’s unclear if I’ll make this weeks or not. I’m hoping that I’m getting bumped because I’m considered a low risk case.

Still no news

Filed under: cancer — tjs at 1:26 pm on Monday, April 9, 2007

Haven’t heard from Dr. Schlenk yet. I’ll call him tomorrow if I still haven’t heard anything.

What a Wonderful World

Filed under: cancer — tjs at 11:44 am on Monday, April 2, 2007

Almost 3 years ago, on May 9th, I was told I had a Sarcoma by a kind of panicky doctor (always comforting). What followed was a month of comptemplating death, amputation, and various other fun things. As it turned out the early guesses by all the doctors were wrong and I got off easy. Just surgery on my arm to remove a malignant glomus (glomangiosarcoma). No chemo, no radiation, still had my arm and hadn’t lost any use of it. Was a whirlwind. Learned a lot about myself and others (the incredible amount of support both friends and strangers provided).

Coming home from surgery (it was an out patient procedure) I slept most of the way home and woke up as we turned into our neighborhood and one of my all time favorite songs, What a Wonderful World (sung, of course, by Louis Armstrong) came on the radio. Had a major impact on me and Lynette (she knows what the song means to me). Was just amazing that that song would come on when it did.

Driving home from Cleveland yesterday, still only half way home but getting ready to ditch the music and listen to the OSU v Georgetown game (meaning no more music for the trip), yet again, the song comes on. Really hard to describe the impact.

Here’s what Lynette blogged (well, it was a mass e-mail in those days) 3 years ago:

And finally:

–As I turned onto our street, one of Tracy’s all-time favorite songs
came on the radio. I thought it was an appropriate way to end the day
(and this last month): Louis Armstrong’s “What a Wonderful World.”

I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world

I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world

The colours of the rainbow, so pretty in the sky
Are also on the faces of people going by
I see friends shakin’ hands, sayin’ “How do you do?”
They’re really saying “I love you”

I hear babies cryin’, I watch them grow
They’ll learn much more than I’ll ever know
And I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world

Oh yeah

Good night from a grateful, humble, and overwhelmed person. What a
wonderful world!
Lynette

What a Wonderful World!
Oh yeah

Surgery, Phase 1, complete

Filed under: cancer — las at 10:10 am on Saturday, March 31, 2007

I am writing for Tracy while he is lying around doing nothing in a hospital bed. I guess this falls under the “in sickness and in health” category of our marriage vows! But here is a rundown of the last couple of days.

We drove as a family to Cleveland Thursday as soon as the kids got out of school for Spring Break. Much to their chagrin, Cleveland is all they can say for their “Where did you go for Spring Break?” stories when they get back to school. Oh well.

Anyway, we arrived at the hotel Thursday night around 9 pm. Tracy’s parents flew to Cleveland Thursday afternoon from Florida and went straight to the hotel. We got all situated with a blow up mattress we brought from Indy and by moving furniture around. Six of us in one room…quite cozy! It was actually a suite with two separate rooms and a big bathroom, so it worked out well. We were only here for two nights.

Friday morning at 8 am, we all trooped over to the hospital and got Tracy admitted. His pre-op stuff (vitals, attractive hospital attire–gown, hat, booties–IV started, etc.) was complete by 9 am. The nurse told us we’d have to wait until 10:30 before they took him into OR. So the kids, parents, and Tracy & I sat and talked and watched Tracy lie on his hospital bed for an hour and a half. Needless to say, the kids were stir crazy (as was I) by the time they took him away.

Tracy’s parents took the kids back to the hotel and I found a spot to camp out. Cleveland Clinic, from a surgical standpoint, is quite the well-oiled machine. I was given a pager and told to also check any monitor located throughout the family waiting area to see Tracy’s status. He finally got to the OR around 11:00. I had been told the surgery would last 1.5-2 hours. At noon, my pager buzzed. I thought, “wow…already?” I went to the desk and they told me he had just gone into surgery at 11:56 a.m. I guess “in O.R.” and “starting surgery” are two different steps.

By 2:30, I was close to a nervous breakdown. Finally, I heard my name called over the loudspeaker and the surgeon (Dr. Schlenk) met me to tell me how the surgery went. He said Tracy did OK. The surgery took longer than expected because the area he was poking around in (not the way he put it), is home to vital structures and arteries, so he has to really be cautious. Thank you Mr. Doctor. He also said he did not want to expose the areas to any more trauma than necessary at this diagnostic phase of Tracy’s treatment. If we have to move forward with more surgeries and other treatments, that area will get enough trauma.

Dr. Schlenk said he looked at several “samples” of the tissue under the microscope during surgery, with a pathologist, and at first glance the material seems fibrous, not necessarily cancerous. I said, “So is that good?” He said, “It’s inconclusive.” Sigh. Here we go again. However, Dr. Schlenk took many samples to send to pathology to get a better representation of the mass. We should get the results of the pathology within a week or so.

Tracy was in recovery for about 1.5 hours before I got to see him. He was pretty out of it when I got there. I was so happy to see him. By this point it was about 4 pm. When he awoke from surgery, he was in severe pain in his arm and shoulder. I think the nerve got all agitated during the surgery so it was pretty riled up. He got lots of “happy juice” and it took a long time before that finally abated.

Around 6 pm, he was transferred to a hospital room. By this point he had progressed from sucking on a water soaked sponge to eating ice chips. He was thrilled. I said, “just think honey, next it will be jello!”

I got him situated and, after a break for dinner with the kids, went back to tuck Tracy in for the night. Am I a good wife or what? I got back to the hotel room around 9:45 last night. I was exhausted, but relieved.

This morning I got up there to see him and he is almost his old self. He looked, sounded, smelled, acted better than the night before. He is up and moving around, doing all the things he needs to do, and was just generally in a better frame of mind. He’s still in some pain, and has been taking various forms of oral pain medications through the night.

They brought him an exciting breakfast of grape juice, broth, hot tea and…you guessed it…JELLO! The nurse said, “I think we’ll get you a solid lunch today.” We looked at each other in askance. Tracy said, “Uh, I’m supposed to go home today.” The nurse looked at him and said, “You’ll still be here by lunch.” I guess it takes a while to get out of the hospital.

So much for an 11 am discharge! The hotel is letting us stay until 2 pm which helps a ton…kids are happier watching TV than sitting in a boring hospital room. So am I! Tracy’s pretty desperate for entertainment. When I arrived this morning, he was watching a Mary Kate & Ashley (those twin girls) movie on TV. I looked at him and said, “Are you SURE you feel ok?”

Now we just wait for discharge orders and we’ll head back to Indy.

We can’t thank you all enough for your outpouring of prayers, love, support and encouragement. I felt encased in love and prayer yesterday as I was going through moments of sheer panic and terror. The things one thinks about while one waits for a loved one to get out of surgery are not the most pleasant.

I will continue to update or Tracy will as we learn more.

I leave you with this passage from the Bible. Thanks to a friend who suggested we substitute the name in the passage with our own name, this passage is now much more personal.

Isaiah 43:1-3
But now, O Tracy, listen to the Lord who created you.
O Tracy, the one who formed you says,
“Do not be afraid, for I have ransomed you.
I have called you by name; you are mine.
2 When you go through deep waters,
I will be with you.
When you go through rivers of difficulty,
you will not drown.
When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.
3 For I am the Lord, your God,
the Holy One of Israel, your Savior.

Blessed be the name of the Lord!

Support

Filed under: cancer — tjs at 6:19 pm on Thursday, March 29, 2007

As always the offers of support and concern are amazing. We’ve only been in Indianapolis for 9 months and didn’t realize just how deep of a network of friends we had until we hit this trouble.

To all of you, both in Indianapolis and elsewhere, thanks for the support. It means more than you know. I appreciate the calls checking in on me. Even when I don’t answer (which is frequently) because I just don’t feel like facing reality or for some other equally trivial reason. Family members have even gotten the same treatment. However, it warms my heart to see the call even when I don’t answer and I appreciate it.

Just speaking online with a coworker and friend who totally brightened my evening with this:

8:10:10 PM jmemge: thinking of and praying for….you made the Emge dinner table prayer tonight!
8:11:04 PM jmemge: I think our lost cat and Ellen’s friends little baby sister’s bottom rash got bumped from the list for you

Told him the Snells had the cat and rash prayers covered tonight.

Thanks again to all of you.

It’s on!

Filed under: cancer — tjs at 3:44 pm on Thursday, March 29, 2007

Just talked to Dr. Schlenk. The tumor board approved his approach. I check in at 8AM so I’m guessing I’ll be done by noon or so. Lynette will post here as soon as she can with an update.

Surgery Friday (probably)

Filed under: cancer — tjs at 4:49 pm on Monday, March 26, 2007

Met with Dr. Schenk this morning. Definitely a tumor involving the artery. No way to do a biopsy without surgery. So Friday I’m heading back to Cleveland for surgery. However, in contrast to the neurosurgeon in Indy, the surgery is only to do a biopsy. They’ll go in and from the front of my neck and get access to the tumor for a biopsy. Most likely won’t know anything after surgery. Pathology results will take about a week. This is a much less drastic approach than the proposal from the Dr. in Indy. However, it’ll most likely result in a second operation. Either right away or post chemo and/or radiation treatment. Still is major surgery with the associated risk.

Surgery is tentative right now but almost certain. The tumor board meets on Thursdays and a multi-disciplinary team will review my case to confirm Dr. Schenk is taking the right approach. This treatment method is one of the reasons I didn’t continue treatment in Indianapolis. I know with cancers that patients seen in a facility with multi-disciplinary approach have a better prognosis than those that don’t (at least for difficult cases such as Sarcomas or whatever the crazy thing in my neck turns out to be).

Should the board give the OK I’ll have surgery on Friday, 3/30. Spend the night in the hospital and be ready to go home on Saturday. Recovery time takes about a week but shouldn’t be too bad. I can still do something with the family for spring break (any last minute ideas anyone?) but just have to take it easy.

Cleveland Clinic

Filed under: cancer — tjs at 9:50 am on Sunday, March 25, 2007

Heading to the Cleveland Clinic Spine Institute on Monday to meet with Dr. Schlenk. Hopefully I’ll have a surgery date by tomorrow. Five hour drive each way or about 6.5 by air (no direct flights) so I’m just driving over.

Biopsy

Filed under: Uncategorized — tjs at 3:30 pm on Wednesday, March 14, 2007

Just talked to Dr. Rushing. The tumor isn’t reachable using a fine needle biopsy. Only way to get to it is surgery. Evaluating now which surgeon then will see how fast I can get in.

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