Starting Chemo May 2008
Comments
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wooohooo duck tape brigade! Good luck julie!
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Thinking of you Julie-and praying for yur FIL.
Thinking of you too, Jen--hope that all goes well with your visit with the surgeon. You are braver than me....
Have appointment Tues. to be evaluated for lymphadema in my right arm--it isn't too bad right now, but I want it under control before it gets any worse.
Hope that all of you are having a great day!
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Thank you all for the thoughts and prayers. I was very helpful to them and I hoped I convinced them that we do know a few things. It's amazing what I learned from my own experiences and how much that helped us get through the day. The surgeon didn't have the actual CT scans - only the written reports which didn't allow him to be real specific. I liked the oncologist and he was very thorough. FIL has a large (8.4x5x10 cm) unusual (similar to non small cell lung cancer but with large cell carcinoma neuroendicrine features) tumor in his upper right lobe. This type of tumor has the worst prognosis of all lung cancer types. The plan is to see if he is a candidate for surgery. Onc didn't think tumor had spread out of lung and didn't see any distinct lymph node involvement. FIL had PET scan today to determine those things. If tumor is still contained, will then do a pulmonary function test to see if he can live without that portion of his lung. If surgery isn't an option, then we will have to look at other options.
I was a good girl and didn't get out the tape once (was tempted, though). MIL knows everything and you can't convince her otherwise. She knows everything, but she doesn't know this! I told them that this is handled completely differently than most other medical situations/procedures that they have dealt with. FIL wants to have this taken care of NOW! Wanted to see if he could just be admitted to the hospital to have all of the tests done and stay for surgery. We've tried to tell him that he will have to "work" to make everything happen and things are moving along quickly. He saw both doctors and had a PET scan all within 10 days of the initial diagnosis. I think we all could have lived with that timeline. MIL is upset that there is no "definitive" doctor in charge of everything. I tried to reiterate that this is a team approach and different medical professionals will move in and out of the picture as needed. I'm not being nasty, but am trying to be fairly forceful with my opinions. I would never just let them sink, which they would have done yesterday, if I wasn't there taking notes. MIL wants FIL to learn to do some of these things himself (like ask for copies of path reports) and was trying to signal to me with her eyes to have him do it. I told her it didn't matter who asks, just that it gets done! This doesn't have to be that kind of a life learning lesson. My DH took them for the PET scan today and was just trying to get the point across that it isn't about her, even though that is how she is acting.
Thanks for letting me vent. It's bad enough that my FIL has to go through this, but all of this other crap just wears me out.
Then (my funny for the day) I found out that a 5th grade boy "asked out" my 5th grade daughter! She said no. He is a troublesome child and his name is mentioned every time bad behaviour is mentioned. Just when I thought I understood girls. . .
Have I told you lately that I love all of you? I do!
Hugs to all - Julie
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Wow Jules....what a day. I admire your patience and your love and your perspective. And, as for your daughter, I believe she has a very strong guide....love you all.
Dana...eating better?
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PS visit went VERY well for me! He said the TRAM will be no problem at all. WOOOHOOOO! And they have me scheduled on the 21st. So I will be laid up and drugged for the holidays. At least the lights will be pretty to look at lol.
Julie~ stay strong girlie :O)
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Julie - it always struck me funny how grade school boys and girls think they can be "going out". Where do they go? To the monkey bars? And the class bad boy? Was DD flattered or creepy out?
I'm sorry to read about your FIL diagnosis - hopefully MIL will take her eyes off herself and realize she has someone nearby who understands more than most and can offer insight.
Jackie - have you fought against lymphedema this entire time? Will your be going to therapy for this, wearing a compression sleeve or ???
Eddie - Fabulous picture!
Rock - when do you come home? Are you ready or wishing for more time?
Jen - hurray for the upcoming TRAM. Mine is scheduled for Jan. 11. How long will you be in the hospital? And how long did your surgeon say you'd be out of commission? Let us know how the Christmas lights appear through the drug altered vision.
Everyone else - I've been reading, not posting. (is that similar to long time listener-1st time caller - I don't think so as those call in shows don't care about each other the way my May sisters do) It's good to keep up with the happening in your lives through this site and FB.
The past two days DH and I have been baking cookies - first time doing this together in 20 years of marriage. The experience was enjoyable! Initially he was driving me nuts, he hates messes so he would clean up as we went and I couldn't find some things when looking for them as they were washed dried and put away. In the end it was a real treat because he left minimal for the big clean up.The sugar cookies didn't turn out very well - tried a new recip, cookies didn't hold their shape, candy canes morphed into saxaphones and snowmen into blobs of odd shapes. They do taste quite good though.
My classes have gone well. I'm just finishing the 2nd 8 week block. Proud to say so far I am an A student!
DS, still working with YWAM is co-leading a 2 month outreach to Taiwan and an undisclosed location. He has matured late in life and I'm astounded with the change in him. God is going a good work both in him and through him.
DD will be home for Christmas break this Friday. Looks like she'll complete her schooling in two more semesters. Three weekends ago we met in Denver, saw a play, talked, and walked around downtown Denver. It was a priceless weekend. Don't know what I enjoyed more - seeing the play myself or witnessing her reaction. (As I'm writing this I am thinking perhaps I already shared this with you - but since I took the time to type it I'm leaving it in this post)
I have a dear friend who has been recently diagnosed with Stage I BC, scheduled for lumpectomy early January. At this point she is refusing radiation. Instead she is eating an alkaline diet, and will be taking home hyperbaric Oxygen treatments (her DH rented a chamber and will be setting it up in their living room). My instinct want to shake her and say take the damn radiation BUT this is HER journey, not mine. I've learned on our blog and on BCO that women handle this "darkness" many different ways. The chosen way has to be the one that the woman can live with. After 6 months of hellacious Femara treatment I stopped taking it, instead taking supplements that I believe will make a difference in the long run. Several of you felt I made the wrong choice, voiced it lovingly and then let it go. I am go grateful that we accept each other and our decisions.
There are still a few cookies to be iced so I'll sign off for now.
Love to all!
Robin
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Robin - Good to see you. Glad the baking, and the cookies, turned out well.
Julie - Yes, it's hard to deal with the ones who "know everything"! But it sounds like you were a big help to them - I hope it goes well...and quickly! I can't even imagine what Katie (my 5th grader) would do if a boy asked her out!
I am somewhat better, but something is still off because I sound like a sick duck when I cough and, after 6 days, I'm still coughing. I think I might be developing a sinus infection, so I'll probably be calling the office again tomorrow. Too many things coming up to be sick!!
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Robin, good to hear from you. I laughed at your description of candy canes morphing into saxophones. You know, I do a lot of cookie baking this time of year, but never cookies that are supposed to look like something. They're beyond me.
Cris, you better get better soon.
Jen - what a Christmas present you're giving yourself. When you decide to do something, wow: you get it done.
Julie, thinking of you; thinking of everyone.
Linda
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Linda - I'm with you - I'm lucky if round cookies turn out round. I do pretty good with the pre-formed frozen ones that we buy through the school's fund raisers.
Robin - it is nice to hear from you. So glad you get to spend the holidays with DD and that your classes are going well.
Cris - get better soon. I know several people who are on their 3rd round of antibiotics. Whatever they have just keeps coming back.
Jen - are you singing "All I want for Christmas is a brand new boob"? Sounds like Santa is going to be very good to you this year.
As for young love - no, dd wasn't interested and finds the boy disgusting. However, her friend who went to deliver the rejection to the boy said that she would like to go out with him. He started making "puking" sounds. I guess that was a no. Isn't this going to be fun? LOL
My in-laws should get some info today or tomorrow on the PET scan. They have another appointment with the onc on Thursday to go over everything. They told me they didn't want me to come this time. Oh well, what can you do? I probably knew too much.
Have a wonderful week everyone! We have a little bit of snow and are expecting more later in the week. It will probably arrive just in time to make all of our concerts and recitals a mess. We have 4 days of music coming up: 1 elem school band concert, 1 middlie school band concert, 1 piano recital and 1 elem school chorus concert. They will be fun. Can't wait to hear the oboe in a group setting.
Hugs to all - Julie
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Cookie hints from the kitchen of a person who bakes way too much during the holidays. ~invest in a mini icecream scoop or cookie scoop. They are cheap, and all the cookies come out round and the same size. Sugar cookies....... MUCH easier to just buy a rool of premade and roll it out. You will be spending a ton of time decorating them afterwards to make up for the "not being so homemade " part. Pillsbury tends to not turn hard as well. Give this a try.... make up the nestle toll house cookie recipe but instead of using chocolate chips, use butterscotch and then add in some toffee bits. YUM!
Cris~ feel better soon!
Linda~ They said they could do it after the holidays and I told the doc that if I can get it in before the 1st my deductible was covered already. So they called the hospital to see where they could get me in. He even offered to do it on a saturday.
Julie~ you naughty thing, I'll be singing that for days ROFl!
Robin~ GOOD JOB!!!!!!!!!!!!!! Keep up them good grades girlie :O)
I also am a lurker and no poster lately. Blame it on the ________ <---- add whatever works for you lol
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Kristy, I haven't received any address updates so far... (I'm thinking there would only be one or maybe two, but I could be wrong about those, even.)
Jen, thanks for the cookie advice. I'll have to wait until after the holidays to bake cookies, 'cause we're in the middle of our holiday journeys ... Maybe I'll call them "New Year's" cookies. I'm also going to try Linda's fruitcake recipe (the Fannie Farmer recipe). My dh has been drooling all over the page, ever since I found it on line and printed it out. He especially likes the possibility that I might soak all the dried fruit in brandy for a couple of weeks before I use it... You are going to have an exciting Christmas and New Year's holiday, with your TRAM coming up on the 21st. Great opportunity to sit back and let everyone else take care of you.
Julie, what an awful time of the year to be dealing with medical crises. I hope everything calms down long enough for your in-laws to be able to spend some time together and with family. I'm listening to Christmas carols on my MIL's cable TV channel right now. Not the same as kids in the orchestra, though. That would be much more fun. A millenium ago, I was in the high school choir, and our Christmas holiday concerts were among my fondest memories of those years.
Robin, ... "cookies didn't hold their shape, candy canes morphed into saxaphones and snowmen into blobs of odd shapes" ... That's what happens when the sun comes out and melts stuff. It's okay -- I think the taste is more important. IMHO, some of the prettiest cookies (the professionally-decorated ones) taste awful. If your family is like mine, the cookies disappear too quickly to worry about it. When I bake cookies (which isn't very often), I set aside the "mutant" ones and let dh get at those first.
Cris and Gracie, I hope you're both feeling better by now. Cris, I often get a sinus infection following a cold; my last 2 rounds of chemo were finished with a week's worth of sinus pain and congestion (and antibiotics). Gracie, I'm glad you're getting some attention for that LE. Mine was very mild when it started, and fortunately it regressed and hasn't come back. I do think it waxes and wanes, 'cause sometimes I can feel a sense of tightness in my wrist or upper arm or chest wall. Doesn't look swollen or odd, and it goes away by the next morning. I hope yours is transient, too.
To all my chemo sisters: I am thinking of you all, as we move toward the holidays. I would love to be with you, or have you with me, sitting in front of the fireplace and sipping cups of hot cocoa. I'm not there by my fireplace right now, though -- we're visiting my MIL and other family members in the midwest. Then we'll be headed to see my family for awhile. This crazy 3-leg trip involves more than 2,700 miles of driving. But, considering the baggage restrictions and other hassles of commercial airlines (and the lack of flexibility), driving is still way better.
Everybody stay warm, and eat some cookies for me! (Otters prefer them when they're still warm.)
otter
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Good morning ladies! thought I would drop in and pull some strength from you guys this morning. I have a mammo and ultrasound tomorrow morning. This is the first one that I've kinda been nervous about, not that I have found anything or such. I think it's mostly to do with the upcoming surgery, and the thought went thru my mind..... what if they found something on the other side???? I guess this underlaying fear will be there for the rest of my life, just wish it would go away! Doc said he won't count me as clean until I hit the 2 year mark.... in april. Gads! Almost 2 years since all this crap has started.. can you believe it? Last year most of us just had fuzz on our heads for cmas.
So bundle up tomorrow morning its a tad chilly here and be ready to go at 10am :O)
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I'll be right there with you, Jen!
Linda
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I'll be there, Jen. Hey, isn't that a Jackson 5 song?: I'll Be There.
otter
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Hey Jen....I hope you have a mini van to fit us all, could be a bit crowded. 10 am you say...i guess that means 8:00 for me, thats ok i'll still be there so i can hear the doc say everything is A-OK!!!
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I'm with all of them and you, Jen.
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Wooohooo! I'm gonna rent a party bus for us LOL.
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That's a great idea!
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(Shhhh... It's Julie's birthday today!)
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OK..~~~whispering~~~
HAPPY BIRTHDAY JULIE
(I was whispering in my head - typing in a loud voice)
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Jen - thanks for the cookie ideas. I will try that with round 2.
I have the day off Wed. so make room for me on that bus. Won't the technicians gawk when they see 18women walking in with you. Makes me laugh just to think of it. Then again - we could put on our cloak of invisibility...
Just saw my PS today - surgery is a go for Jan. 11
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Thanks for the birthday wishes here and on FB. It was a pretty low key kind of day, which is good this time of year.
Robin - we'll bring the party bus to your place once we get done with Jen in a few weeks.
I feel like everything we have going on is in the next two weeks. PET scan results for FIL was good. The tumor is contained within the lung and hasn't spread. He is tentatively scheduled for surgery on Monday. He has to pass his pulmonary function test on Thursday first. I do get to go along after all, they don't like to drive in bad weather and we are expecting lots of rain and cold. I could use a few or more of you to hang out in the hospital with me.
Hugs to all - Julie
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No problem, Julie. We can fit it in, if you can fit us in! Glad to hear the tumor hasn't spread, and surgery should get it.
otter
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Instead of a party bus wouldn't it be a booby bus then??? *snicker*
Robin~ I had the same problem with the sugar cookies last night. My snowflakes turned into flowers. But then again this year I am forgetting too many things and messing them up. It's not fun for some reason this year. :O(
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Ok made it home from the doc. They said it looks good but you know how it goes, you have to wait on the doc to read everything. Whew! The girls asked if I would come back in after my surgery to show them what a TRAM looks like. They hadn't had one in there.
I got everyone's cards in the mail today wooohooo! Rock I sent yours to NY so it would be waiting on you when you get here.
Have a great day everyone! Thanks for holding my hand today!!! XXXOOO
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That's good news, Jen. I just wish they could tell you right away, even if you had to wait a few minutes for a radiologist to look at the images.
Now can we have some cookies?
otter
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I like cookies and I don't even care what shape they are. We definitely need some hot cocoa to go with them today. The wind is awful here with some blowing snow.
Jen - I'm glad you got through the morning.
Thanks to all of you who came with me to FIL's pre-op appointment today. I was just about ready to get out the duct tape! I would have used it on all of us (not all of you "us", me, MIL and FIL). You would think after 26 years of marriage to their son I would be able to tolerate some of their antics.
Eat cookies, stay warm - Julie
I just checked and the wind chill is 6 degrees!
Diagnosis: 3/25/2008, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- -
Just finished the last batch of cookies - will send them to family in Ohio tomorrow. Mom can't bake anymore, a sister has just taken in her daughter and 2 grandsons, oldest sis is chronically ill and the rest of the fam simply likes cookies. And yes - I send the old shapped ones also. They taste the same!
Julie - we have had bitter cold but snow was minimal.
Jen - glad with squishing is over.
Otter - have all the cookies you want! When do you leave for your Christma trip? - never mind. I just reread your post. DH wants to make a fruit cake - think he just wants to soak it in rum or brandy or something with alcohol. Fannie Farmer, huh? I'll see if I can find it on the internet.
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I got an old fannie farmer cookbook at the book sale this year. Haven't really dug thru it yet though.
Otter~ already I am done seeing cookies this year. Just don't have it in me for some reason. Hubs said it was because I normally have a gf over and we spend the day baking and this year I didn't have anyone over. I think it might be too many things happening at once for me right now. I've been focusing on the surgery when i should be focusing on the season instead. Come on new year!
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Linda said she used the dark fruitcake recipe from the Fannie Farmer cookbook. I googled "fannie farmer" x "fruitcake" and came up with this recipe: http://www.epicurious.com/recipes/food/views/Dark-Fruit-Cake-236603
If you read the reviews for that recipe, plus anything else about making good fruitcakes, they say it's better if you use dried fruit instead of candied (sweet) fruit, and soak the fruit in liquor (e.g., brandy) before using it in the cake. I wouldn't know; I've never made a fruitcake. This will be a first time for me. It won't matter how it comes out, though, because dh eats anything.
Our holidays are going to end up kind of stressful.
My MIL is in a physical rehab center. She has had severe pain in her hips and lower back for months now, and it finally got so bad that she couldn't walk and ended up going to the hospital. None of her doctors have been able to figure out what was causing the pain. She had both hips replaced awhile back, and her primary care doc thought the replacements had gone bad. The surgeon who did the surgeries said there was nothing wrong with the prosthetic joints -- the pain had to be from something else. Finally she consulted an orthopedic surgeon who knew what he was doing. He told her yesterday that both her prosthetic hip joints have worn out. Their lifespan is (was) about 10 years, and it has been that long. So, she is scheduled for hip replacement surgery in mid-January for one side; the other side will be done about 6 weeks later if the first surgery goes okay. All this depends on a medical "clearance" from her primary care doc -- she is in her mid-80's and has to be able to tolerate the surgery. In the meantime, she'll be in the rehab center in a shared hospital room instead of her apartment. <sigh>
And, I talked to my mom a few days ago. (rock, are you reading this?) My mom sounded kind of sad. When I asked if she and dad were okay, mom said they were having "some problems." ("New problems?", I thought. Oh, no -- now what's happened? I assumed dad must be back in the hospital, and she hadn't called to tell me.) What problems? Well, it had snowed 4 inches, and mom realized she would have to take out the garbage herself and she didn't have any winter boots. That was the "problem".
Until now, dad has pulled the big, wheeled trash can down to the curb the night before the weekly pick-up. Mom said she can't ask him to do that anymore (for a variety of reasons, one being that he might wander off down the street and not come back). So now she has to figure out how to get out to the garage and drag the plastic container through the snow to the street.
And, she said, she doesn't have any winter boots to wear. What? Living in snow country, and no boots? Since when? She said she hasn't had any boots for years. And now, she doesn't know what to do about the garbage. Call a neighbor? No, she can't bother a neighbor with something like that. Skip a week, so the driveway will be plowed and the sidewalk shoveled (those jobs are hired out)? No, can't skip a week -- they make too much garbage.
I am thinking, what am I supposed to do about the garbage, or buying her some new boots, when I'm a 13-hour drive away??? And, if she is having trouble figuring out what to do about the garbage, how can she do all the other things that need to be done to keep a house? Is it finally time to move to a retirement center? How can I convince her of that, when she gets angry every time the subject is brought up? <sigh>
Oops. TIme for lunch. Granddaughter Annie is hungry. Thanks for listening.
Hugs to all...
otter
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