Worth the wait

THIS time!!! I heard from my oncologist's office today; they had the results of the Oncotype Dx test. My score is only 11, which indicates I don't need chemo. Join me in saying

I don't know why it's not dancing, like it does here.

The test is a scale of 0 to 100, with 0 being the best. I go back to see the oncologist tomorrow, and I'm scheduled to see the radiation oncologist on Wednesday morning.

FINALLY, we can get this treatment moving along.

My infection appears to be improving. I'm off to apply a little moist heat, read a bit and hit the sack. Seems I've finally relaxed a bit, and I'm ready to pass out!!!

xoxoxo
Sharon

All About Me AGAIN

Al's doing well, thanks for wondering. Having some swelling of the lymph nodes in his neck that we're watching closely. He has another CT on Monday and we see Dr. Beck -- hopefully for the last time -- on August 4.

Me, not so good. Cut to the chase -- I have breast cancer. My family's informed, and my dearest best friend; some things should be delivered face-to-face.

Anywho, back to the details (nothing gory, promise). I do a monthly Breast Self Exam about the first of each month (and you should too!). I thought I felt a lump, but got busy with our 3rd of July adventure and weekend activities. Remembered Sunday morning, double checked for myself, and even made Al check both sides to see if he felt something different. I've never seen his face go white so quickly before. THEN he started 'talking me down' -- that it's probably just an enlarged lymph node, I've had fibro-cystic breast issues in the past, yada, yada, yada. But we agreed I'd call my doc first thing in the morning.

I did, and they worked me in over her normal lunch break. She examined me, ordered a mammogram and a sonogram (which is evidently standard operating procedure in their office). They showed me both 'films' and there was a definite ugly black blotch on the sonogram; I couldn't tell jack from the mammogram.

Set up a biopsy for Tuesday morning, wherein they numbed my boob and used a needle to extract 7 samples from the mass to send to the lab. Then they inserted a titanium 'marker' in that spot so that if it were benign they'd know for future mammograms we'd already examined it, etc.. They did another mammogram to ensure the marker was in the right place.

My doctor's office called me Wednesday morning to say I have infectious ductile cell carcinoma; I went back over the lunch break again, and the radiologist had requested an MRI. That was entertaining (I've never had an MRI before). So now we're just waiting for the detailed, final report from the radiologist which will probably take about a week. Then I'll be scheduled with a surgeon in Wichita, probably another week. Evidently the local surgeons still believe total mastectomy is the only answer, so my doc won't refer me to them (thank goodness!). I'll be seeing a breast cancer specialist, who will present me with my options and her recommendation. I'm expecting a lumpectomy in early August, presumably followed by chemo and/or radiation.

I'll be doing updates from here instead of sending out e-mails like I did for Al. I just needed to share a bit, bring you all into the loop early on, and of course remind you to get your mammies grammed.

Nothing's happening any time soon. Or as Al says, "Hurry up and wait".

Thanks for your support. I'll be talking to you.
xoxoxo
tos

Update on Al #1

If you don't care to get these updates, please reply to me to be removed. I know what a downer this is -- believe me -- so I'll understand.

Frequent e-mail updates worked best for me when Al had bypass surgery in 2000. I will update everybody on this mail list as I have news to share (and access to a computer).

We saw Dr. Berquist today, and Al's diagnosis is squamous cell carcinoma. They aren't positive whether the tumor is inside his trachea, or behind it pushing in.

He's going to have a PET scan on Wednesday afternoon here at our local hospital to see where it really is and whether it's spread, so we'll know what stage of cancer he's in.

Then they want us to go to M D Anderson Cancer Center, which is at the University of Texas in Houston for their evaluation. Cancer in the trachea is evidently very rare, and may be difficult to treat. They're happy to treat us here at home, but none of us want to be second-guessing our decisions down the road. They're working on getting that scheduled, but we're expecting it to happen pretty quick.

Thanks for all your support and encouragement. Please keep Al in yourthoughts, your hearts, your prayers -- whatever works for you.

Sharon

Ed. note: This was the first conversation (via MSN IM) I had about Al's cancer; I forwarded it in its entirety to several dear on-line friends by way of explanation of why I didn't expect to be around for a bit. I've included only MY part of the conversation here.

We got some devastating news today in Al's (DH) bronchoscopy. Been trying to decide who I want to talk to, and whether I want to talk about anything yet.

Al had a bad cold this winter. The cold passed, the cough lingered. Not uncommon for him. A couple of weeks ago, he started coughing up some blood, so I sent him to his Primary Care Physician. Skeered the PCP, so he referred Al to a pulmonary specialist, Dr. Berquist.

The appt with Dr. B was yesterday. He wanted to do a bronchoscopy, where they send a fiber-optic probe down your throat into the lungs to see what's up. Good news -- the lungs are clear, look real healthy, etc. Bad news -- on pulling out the scope, he discovered a mass on his trachea.

The trachea is your 'wind pipe' -- basically the source of all air to your lungs. Al's trachea is about 50% blocked. Knowing this makes a WHOLE lot of things about him since Christmas make sense. Yeah, it's probably cancer. They can't or won't do surgery for it -- I was a little out of it when we were talking about it -- I wasn't lucid enough to really ask good questions, but they'll probably want to start some radiation treatment right away. Even if it's not cancer, I get the idea it's life-threatening.

I fully expected them to find nothing. I wasn't expecting bad news at all, and it hit me like a ton of bricks on my head. They took several 'bites' of this mass for a biopsy, and did a couple of 'washes' (whatever that is) -- all of which are pending in the lab. If we're REAL lucky, they'll have results for us tomorrow, but probably not until Monday. Dr. B told me not to tell him anything more right now than he has a growth-mass-tumor that's blocking his windpipe, because the drugs would affect his thought processes and he wouldn't be able to make sense of it anyway.

But he won't let Al go to work -- until further notice, whenever that is. Al's just pissed he can't go to work because (a) they need him there, and (b) he'll be bored to death at home because he's not supposed to do any work!

I asked Dr. B on a scale of 1 - 5 with 1 being all will be well, and 5 being worst case scenario, and he said "this is definitely a 5; it's very serious stuff". Evidently a tumor on your trachea is VERY rare. I'm thinking that's why they can't do surgery. I have to come up with some good questions before we go back to the doctor.

I just don't even want to tell people about it until we know what's going on and how we're going to treat it. And if Al's even gonna live.

It was pretty cool though -- they showed us the pictures after the scope. The GOOD part of this is that they also brought in a gastroenterologist, who scoped his esophagus and stomach and they are both clean and clear. That seemed to be a big worry for them.

We ran all over town after his test. When we came home, we found out they wanted him to have a CAT scan, so we were home about half an hour, then off for the CAT scan.

All I've wanted to do all day is crawl back into bed and pull the covers over my head. I took the whole day off because I had no idea how Al would react to the meds they gave him -- the various drugs they gave him for the scope and CAT scan. They called it 'conscious sedation'.

He's resting now. Finally. He remembers a little when they started putting the tube in and remembers feeling them pull it out, but nothing else. He did bring up the subject of radiation and chemo this afternoon. I think he's seeing RIGHT through me.

I just don't want to have to be answering a lot of questions and telling and retelling this story, and I know we will be -- I remember it well from his bypass 5 years ago. I'm having such a case of the guilts -- I've been poo-pooing some of his symptoms that, in hindsight, were red flags. I just don't want to imagine my life without him in it. I got through it five years ago and thought we wouldn't have to think about it again any time soon. I know, it's irrational, but I can't help feeling that way.

I talked to my boss this afternoon, and I asked her to tell everybody in the office so we wouldn't have to talk about it until after we see Dr. b again. Hell, he's more worried about ME than he is about himself. I think he already knows at least as much as I do. But I'm not having THAT conversation with him until these drugs are washed out of his system. Al confides in our next-door neighbor, and they had a nice chat over the fence earlier.

I keep forgetting the name of the location this is growing. When Dr. B was telling me, I was thinking he was talking about the larnyx -- your voice box, but he made it very clear it was the trachea.

http://www.cancerhelp.org.uk/help/default.asp?page=5696

Found some reading material.

As for Dr. B, we sorta asked around about him locally before Al saw him. He's highly recommended, and we're both really comfortable with him. He mentioned if necessary we'd bring in an oncologist (if cancer) and look at all possible treatment options.

The {hospital} nurse was SO doom and gloom, and I was trying to keep Al unconcerned and stuff while we were there. She was very pleasant and REALLY considerate of me after the doc talked to me. Found a nun to come be with me while I fell apart. Brought me some PUFFs tissues because the hospital tissues suck and I threatened to go to the van for my Kleenex. Even found me a Diet Pepsi when the lounge only had Diet Coke! But she was just doing her routine for discharge, and she had no idea how much I had (not) told Al.

All I wanted to do was get out of a public room and have a good cry. You know I'm not into CHURCHY things. But naturally the nun pulled me into the chapel. I explained to her that I really was OK, I didn't want to talk, I just needed to have a good cry, though I appreciated her being available. So I basically locked myself into the chapel with my Diet Pepsi and my Puffs and bawled my eyes out.

So when I finally decide I'm done, I go to hit the nearest restroom -- and there's a FIELD TRIP, and it's potty time!!! The teacher took one look at me, walked me to the front of the line and made the girls wait (and be quiet) til I finished in there. LOL I was appreciating the noise so I could REALLY finish crying. And blow my nose. I think there are few things less embarassing than blowing your nose in public. Guess I should put that on the Betcha Didn't Know list, huh?

Hmmm, I don't think they tested his lymph nodes. Hope that's a good sign. I was just reading some threads off that link -- about stages of cancer, etc.

I'm off to watch ER with DH on the LR couch (couldn't think of anacronym for couch!). Hope all is well with you. Please update your address book to show this e-mail addy; I can check it easier away from home, and actually respond quicker via gmail.
I appreciate your support, as I know what kind of people you all are, but I'm just not up for having conversations about this yet. Gimme some extra rest and I'll be ready to go again.