LilyFestre-Mommy+Daddy+Baby...now on to Life!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 23 Mar 10 - 11:13 AM

My brother's grandsons call him Pal. So funny.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: GUEST,tam logged out
Date: 23 Mar 10 - 03:14 PM

My older brother called our maternal grandmother "Gammy." So we (all siblings) did too. The cousins thought we were weird because we called her Gammy and they called her Grandma.

I like Gammy. It is unusual.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: katlaughing
Date: 23 Mar 10 - 03:17 PM

That's cute, Sins. I need to make a correction: my boyz back East, Elijah and Akira, call me GrammaKitKat! My sister gets called "Nona" because her first grandchild was born in Italy and they all liked the Italian form. Now, all of her grandkids know her as Nona. My mom was Grammy.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Stilly River Sage
Date: 23 Mar 10 - 05:53 PM

I never met any of my grandparents, so I have nothing to share for that. Since my ex is Puerto Rican, the kids grandparents on his side were Abuelo (he died about 15 years ago) and Abuela (and she's about 90 now). My mother was "grandma" and my dad was "granddad" when the kids got a chance to visit with them, or when we referred to them.

SRS

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: AllisonA(Animaterra)
Date: 24 Mar 10 - 07:41 AM

I agree- you'll be called what the baby decides to call you. What a blessing, lovie- savor the memories and look forward to June!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: jacqui.c
Date: 24 Mar 10 - 08:03 AM

Actually, my granddaughter knows me as 'Nanny In America'. At least, that was how a recent package was addressed! It's shortened to Nanny when we get together.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 24 Mar 10 - 10:59 AM

Kinda feeling like holing up today.

A friend had asked if she could go to chemo with me next week and so I sent details regarding appointment times, etc. She backed out. I'm bummed. I was really looking forward to going with her.

Oh well.

Life goes on and so will my chemo.

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 24 Mar 10 - 11:13 AM

When does your chemo end, Lily? Counting down to completion usually helps me when I'm down. You've had a really UP weekend so a reaction is not a surprise.
Your friend should have asked before offering. Maybe she can join you another time. Maybe she's just not comfortable with and it is probably better and kinder to stay away.
Meantime, some rest is not a bad thing.
I am sending a bit of Maine hideobilia to Pete. Maybe that will cheer you up.
Love,
Mary

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 24 Mar 10 - 12:51 PM

I guess.

I did have a GREAT weekend but it also ended with Veronica asking if I would teach her how to knit next time she comes and we made plans for June. So, yeah, it was hard to say goodbye but I know she will be back and about 10 minutes after she left, I was ok. It's just that this is the second friend to back out after making a big deal about wanting to go with me. I get excited and then they back out so I'm just disappointed. It's not a big deal. I think maybe I won't take anyone else up on their offer to go. My neighbor who wanted to be so helpful and was just about begging for something to do hasn't been heard from since then. So hm.

It's not even that I NEED a ride or the company, it's that I want it. I don't really NEED my neighbor's help but was looking forward to getting to know her better. I'm ok for all but about a week out of my 28 day cycle. I'm planning for the down time this time....I know what to expect from my body, I'm used to being bald (and am going out in public that way if I am too hot with a hat on), I have a handicapped placard so I can go out if I need to and be close to the door and have used the scooters at the store so I know I can do that too. I am currently getting EVERYTHING in the house laundered so all the clothes are clean, sheets and towels are all fresh and I am working on a menu of things that I can make in the next few days and freeze for the nights when it hurts too much to walk to the kitchen, let alone cook...all I'll have to do is throw something in the oven. I don't like the idea of Pete working all day and coming home to have to cook for both himself and me.

So...I'm ok and am planning ahead so I don't have to count on people who back out. It's frustrating and disappointing.

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: katlaughing
Date: 24 Mar 10 - 01:03 PM

I think folks mean well when they offer and they do it because they feel it is the right thing to do. Then they think twice and may be too embarrassed to be honest and call to say I'm sorry I just can't do this, it's too scary for me, or whatever. They may beat themselves up thinking how in the world can they been scared when compared to what you are going through. It doesn't excuse them, but it is human nature. It's too bad they have done so, though.

Good for you for planning ahead and getting so much done! You continue to be an incredible inspiration!

luvyakat

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: wysiwyg
Date: 24 Mar 10 - 01:29 PM

LF, coupla suggestions.

1. Chemo buddies. Well, aren't the best chemo buddies the other patients anyway? How *I* would handle offers to come along-- "Thanks; I usually enjoy spending that time with my chemo buds, but if you want to drop in and spend some time, here's the schedule. What I'd really LOVE would be to be able to chat with you there or on the drive, if you can call me that day?"

2. Goals. In the 28-day cycle there must be goals you want to accomplish. OK, the daily view of what can get done is going to lead to frustration, but if you write the goals for each 28-day cycle as it comes, and post them, you will be surprised to see that they do actually come true, maybe not on the day you might have thought you would LIKE to do them, but you will see them advance. (People here will take note and track it with you, I bet.)

3. 28-day cycles. Well hell, you have been on one type of cycle for a long time. There are bound to be some remnants floating around in the back of your head-- the pain and hassle of the old cycle. If you do a compare/contrast list, the current cycle will be better under the control of your intentionality. And that will support the goals.

YMMV.

~S~

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 24 Mar 10 - 01:50 PM

Susan,
I don't want to wait until the day of to know if someone is going to go or not. Yes, chemo buds are good but truth be told, it's still a scary thing to go to and having a friend along makes the whole world better, you know?

A goal for every 28 days? I have issues setting a goal for each day...can't focus that much at a time...chemo fog/chemo brain...whatever you want to call it. I have no idea what I want to accomplish in the next 28 days other than to not get sick with a cold or something like that. Also, it's sometimes..ok...most times hard to accomplish the goals I set for the day because my idea of what I want to get done and what my actual energy level will allow haven't had a meeting of the minds just yet....I can't remember a day lately when I did everything I wanted to do/get finished. I've learned to say, oh well...it will be there tomorrow.

And the last part...I'm not sure what you mean.

Kat,
I'm not sure that people back out because they are afraid...maybe that's true. I know I didn't want to walk down the chemo halls looking at people who I thought would be all pale, thin, groaning in pain and close to death...I didn't want to see it...so maybe you are right.

Maybe I'm just having a bad day. I'm tired. I'm really kind of put off with people not following through and just want to say the hell with it...I'll do it myself. Add crabby and unreasonable to the list.

Susan....can you elaborate more about the list and intentionality thing?

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: wysiwyg
Date: 24 Mar 10 - 03:13 PM

Susan....can you elaborate more about the list and intentionality thing?

LF, yes, I can do it by posing a couple of questions to consider-- but don't try to cionsider them today. COme back to them when things seem less difficult.

Answering them (even rewriting them first) is "merely" a way of setting one's intentionality in the direction of having/doing/seeing/being them.

1. What are the most important things you want to continue/look forward to/do before the next chemo?

2. Ditto, in a longer term-- say Spring. (By June 21.)

3. Ditto, before New Year's.

4. Ditto, for the next 5 years.

====


The answers do not need to make sense to anyone but you. The ones most worth sharing here are probably the near term (by the time of the next chemo, because those are the ones we can track with you.

If answers emerge for questions 2-4, it can be helpful to note them down in big letters where you will see them daily.


A friend of mine has another approach. It's similar, but instead of seeing the dreams and goals all the time, you do NOT see them. She has people make a list of all the things they want to ask God to do for/with them. On small scrap paper. As many pieces as it takes. The slips go into an envelope labeled "God's Pocket."

You date the envelope, seal it up tight, and put it away, trusting (or daring, LOL) God to act in ALL of those as is best for all concerned.

In a year you give yourself permission to look in there, and note how each thing turned out, what the blessings were, etc.. Those become one's thanksgivings. Then start a new set of slips in a new envelope.

~Susan

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 24 Mar 10 - 03:41 PM

What am I looking forward to before my next chemo treatment (which is next Wednesday, one week from today)?

I have a lunch date on Friday with 2 friends from high school...I'm looking forward to that.

Also, at my next chemo treatment, I am going to celebrate my birthday (a little early) by wearing a big purple crown! I'm also going to make cupcakes all decorated cute for Easter/Spring and my chemo IV pole and I are going to walk around the unit and pass them out! I am looking forward to that little bit of celebratory silliness! I'm planning on baking the cupcakes here and decorating them the night before while at the House of Care. I may even walk some over to the hospital for my ob/gyn oncologist/surgeon and his team! If I get really ambitious, I will take some up to the 7th floor where the nurses took such good care of me for a few days in January.

And I'm going to yoga tonight....I'm looking forward to that.

Something I'm going to do? I'm going to practice being a decent human being because the person that canceled for my next chemo appointment will most likely be at yoga tonight. That's my goal...to just let it go.

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: katlaughing
Date: 24 Mar 10 - 04:40 PM

Add crabby and unreasonable to the list.

Both are allowed.:-) Don't beat yourself up and remember you do things in your own time when you have the energy both mental and physical.

I think it was CapriUni who told us a neat tradition of cutting strips of paper, old wrapping paper, etc. (supposed to start at the New Year) and one each day, write out an affirmation/thanksgiving/prayer/etc. Then put it away in a box or what have you. When Christmas comes, take them out and make a chain of them for decoration and reflection. I think she called it a Blessings Chain.

Enjoy yoga!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: jacqui.c
Date: 24 Mar 10 - 05:08 PM

Michelle - you are amazing, with such a realistic take on life. I think it's great that you are preparing for the next bout of chemo and thinking about how to help Pete, so that he doesn't have to come home from work and cook! At a time when you could be excused for thinking only of what is happening to you, you are showing a real generosity of spirit.

It is disappointing when friends and acquaintances let you down and not unreasonable to be crabby about it. Too many people make promises that they then are unable to keep but I bet, if ever you are on the other side of this street, you will be the one making sure that you keep your promise, knowing how it feels to have been let down.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: AllisonA(Animaterra)
Date: 25 Mar 10 - 07:54 AM

It's also one thing for friends to make an impulsive offer out of love, and then to find out the time and distance involved and think about their own lives and time constraints- yes, they are being "selfish", but maybe they, too, are taking care of themselves. Yes, they shouldn'ta offered in the first place, but I bet they don't have any idea how it let you down.

Oh, I'm just trying to put a pretty light on it- of course you're disappointed! I wish I could drive you- we'd have fun in the car!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 25 Mar 10 - 08:08 AM

Yoga was great last night and I was able to do everything except one knee down twist to the right as it tugged at my port. The deal with my friend who backed out? She was there but I'm over it and managed my goal of being a decent human being just fine.

Had a bit of a rough night...started a new med and it's not agreeing with me....nausea that woke me up and is continuing on this morning.   Good thing I ate well this week because I think my eating is done for a day or two...ugh.

Also, Pete is sick with a cold. He rarely gets sick with anything so we're kind of a miserable lot this morning.

Anyway, the sun is trying to shine despite a cloudy sky, I got most of the laundry done yesterday and have NO plans for today other than to be at home (MAYBE yoga if I'm feeling better).

Love to all,

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 25 Mar 10 - 08:11 AM

Good morning, Michelle.
I bet it would be harder for you to tell your friend how disappointed you are that she backed out at the last minute than for her to tell you she changed her mind.
I wish I were nearby with Jacqui. I promise you we would be there on time and ready for any amount of silliness to make the day go by. We also know how to behave when the occasion calls for it.
Hang in there, girl.
Mary

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Micca
Date: 25 Mar 10 - 01:06 PM

Lily. I suggest you thank your stars that THAT pair of nutters are too far away to Chauffer you, travelling with either or both is hilarious and not for the refined (or the delicate of health)such as your good self. I have been fortunate to travel by car with them and laughed continuously for the entire trip. When Jacqui and I visited a Tim Hortons in Portland (this has become a regular event on my visits) the staff came out of the kitchen en mass to see the 2 crazy Brits who had spent an hour drinking tea and laughing in the window seat! So it might be detrimental to your Port!! but as a Tonic?? you couldnt do better, I hope you are well as you can be and must add that reading this thread and your posts is an inspiration! to anyone
Micca

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: VirginiaTam
Date: 25 Mar 10 - 03:15 PM

Darlin... I am pro'lly preachin' to the choir, but want you to be very careful re Pete's cold. You don't have immune system that can cope with that just now.

big hugz...

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 25 Mar 10 - 07:00 PM

A road trip with Mary and Jacqui? That sounds like a blast!!!!!!   Micca, how lucky are YOU?!?!? I have a picture of riding along with you two and it makes me smile in a big way!!!!!

About Pete's cold. Yep. I know...my immune system is down (actually right now it's on the upswing...but still down from normal). He's just as worried about it as I am. We both wash our hands frequently and since he's started sniffling, he sleeps in another room and will only kiss me on the cheek.

It's been kind of a dreary day here so I went to hang out with Mom for the day. She was hanging new curtains and I helped her with some of the higher stuff where we needed a chair to reach. I can climb...her, not so much. We made soup, gabbed, took naps and played with the dog. I'm pretty tired today...maybe the chemo, maybe the weather...who knows....so I indulged in being kinda lazy today. I did do a little bit of grocery shopping, got the dishes done and another load of laundry now needs to be folded and put away.

6 more days to my half-way (chemo) point!!!! YAY!!!!

Time to make dinner....was thinking fish on the grill but it's raining and cold so I'm making spaghetti to warm our bellies.

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 25 Mar 10 - 08:35 PM

Updated video coming soon....tonight if all goes well!

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Micca
Date: 25 Mar 10 - 08:43 PM

Lily, an observation in passing, if you are making soup and a sandwich for your Mum, I discovered recently that Tomato soup and mashed banana sandwich is not a good combination!!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 25 Mar 10 - 10:50 PM

Here's a link for my updated montage: My Journey Updated

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Sandra in Sydney
Date: 26 Mar 10 - 02:38 AM

I had a very frustrating time watching it - before my iMAc was upgraded last month I couldn't see youtubes

then I could - but recently they've been stopping & starting continually. It's very difficult to watch something so moving when the pic keeps freezing & showing a little spinning logo. But I persevered.

thanks again for sharing your courageous story, Michelle.

sending virtual hugs & kisses

sandra (off to email my Mac expert)

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: AllisonA(Animaterra)
Date: 26 Mar 10 - 08:22 AM

You beautiful one!

(Sandra, PM sent)

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 26 Mar 10 - 08:28 AM

Sandra,

   I'm sorry you had a hard time watching the video! Youtube does that here as well sometimes. I've found that if you click on the pause button and leave it for a minute or two and then click play, it runs much smoother. I don't know why but that does seem to help.

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 26 Mar 10 - 09:03 AM

Good morning, Lily. Snow in Maine this morning. Not a lot, just a warning that we aren't out of it yet.
Hope the sun shines on you.
SINS

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Sandra in Sydney
Date: 26 Mar 10 - 10:49 AM

Thanks Michelle & Animaterra for the youtube explanation

sandra

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Ebbie
Date: 26 Mar 10 - 11:43 AM

Sandra in S, the second time - the replay - runs perfectly smoothly. I have learned that if it 'buffers' continually to just walk away for a moment then rerun it.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Stilly River Sage
Date: 26 Mar 10 - 12:10 PM

Michelle, I have a co-worker going through chemo now (breast cancer). Chemo of course isn't easy, but she seems to have some really excellent conversations with her chemo peeps during the hours she's down there. She tweets from her chemo bed or chair or whatever that is. She has also been blogging about it and posting on facebook to keep us up to date.

I know how hard it is to even go to a chemo lab--you're confronting your own mortality and that of everyone else in the room. You know that it is a place filled with hope and life, and the suggestion above that the friends or neighbor simply drop by for a visit during your treatment might help them adjust, to understand, and then offer useful support as time passes.

Thanks for updating the video--Veronica is beautiful! (So are you!)

SRS

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 26 Mar 10 - 02:42 PM

It's not that I don't think friends shouldn't stop by, it's just that the chemo treatment takes place about 2 hours away from where I live. It's not practical to suggest just popping in, you know?

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: maeve
Date: 27 Mar 10 - 10:56 PM

Sent you a PM, Michelle.

Goodnight.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 28 Mar 10 - 07:35 AM

"Cancer is a word, not a sentence." ~ John Diamond

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: VirginiaTam
Date: 28 Mar 10 - 08:18 AM

Hey! My post about the journal/montage from yesterday blew away. Hrumph? I forgot what I said. Sure it was properly supportive and all that.

So I will just echo what SRS said about the beautiful Veronica and you. Keep working towards wellness, Angel. There are lots of hands, hearts and minds helping you along the way. I am honoured to be one, even if in such a small way.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Bobert
Date: 28 Mar 10 - 09:47 AM

Hey, Michelle... No fear of me poppin' in on you other than here...

Yer in my thoughts and prayers... Keep up the good work... This will pass...

Bobert

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 29 Mar 10 - 09:35 AM

Rainy day in Maine. Hope you are enjoying sunshine.
Mary

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 29 Mar 10 - 11:46 AM

I went to a cooking class last night, learned how to make some Thai food....the night was fun and the food was incredible! At this very moment, I am having leftover Pad Thai. YUM.
    This morning I have decided to use every last bit of energy I have to get things done around here before I go away tomorrow. And then, yoga. :)
   
    I am determined to get everything done today. I don't care how tired I get....my to do list is going to get DONE!

Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: AllisonA(Animaterra)
Date: 29 Mar 10 - 02:44 PM

Sending you loving vibes today...

love,
Allison

Subject: RE: LilyFestre - Port is 'on board' chemo continue
From: KT
Date: 29 Mar 10 - 03:05 PM

Michelle, sending good thoughts from way up here, too, for strength, courage, confidence, and well-being. Hope you get your stuff done, today, but if not, that's okay!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: SINSULL
Date: 29 Mar 10 - 04:38 PM

I can't imagine finishing my To Do list. There is always something else...

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: wysiwyg
Date: 29 Mar 10 - 04:58 PM

LF,

Hey, maybe on the next cycle, you can be all set up to accept help offers for these last few days before travel-- for the really important to-do's that you want to be SURE get done. That might be on the scale that would work for folks who turn out not to feel like Danville is "commuter" range for them. Plus it would happen when you feel well enough to direct, and be clearly in charge, so the peeps can get to know your house and your preferences in case you need them on a less-able day in the cycle.

~S~

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Stilly River Sage
Date: 29 Mar 10 - 07:14 PM

Very good idea. I vote you try that next time someone asks to help. It really will be help, and it will be on the scale that is easier for your neighbors there.

SRS

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 29 Mar 10 - 09:38 PM

Well, I didn't get everything done nor did I go to yoga. I am frustrated with how quickly I get tired. I did get a good chunk of things done (dishes, 4 loads of laundry, swept the entire downstairs, mopped the living room, made meatloaf and chicken divan, talked to someone from NOCC, dusted and got half of my stuff packed). I'm too tired to do anything else...including eating dinner. BLah.

Subject: RE: LilyFestre - Port is 'on board' chemo continue
From: KT
Date: 29 Mar 10 - 09:46 PM

Blah, yourself! you got a LOT done!!! Goodonya! Now repeat after me....    good on me!!

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: katlaughing
Date: 29 Mar 10 - 09:58 PM

Good lord, sounds to me as if you got a TON of stuff done! Don't beat yourself up, darlin'...part of this lesson, which you are doing really well with, is learning self-love...that includes counting up all that you have done and telling yourself, "great job" the rest can wait. The house, laundry, etc. will be there. Right now, the only real thing that matters is YOU and your body...what it is telling you, i.e. rest now!**bg**

Don't ya just love all of us bossy b***#@&?!:-)

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Sandra in Sydney
Date: 30 Mar 10 - 01:48 AM

what you did today was what you were meant to do (or at least, that's what I always tell myself!)

love from sandra

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: maeve
Date: 30 Mar 10 - 07:03 AM

Ummm...Michelle: what you completed is more than many people manage in a day WITHOUT the health challenge. You're making the rest of us look lazy, woman!

Rest easy and move along to something wonderful.

maeve

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: AllisonA(Animaterra)
Date: 30 Mar 10 - 08:17 AM

What maeve said!

Love to you, my dear

Allison