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

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 26 Jan 10 - 04:18 PM

Waiting...
the hardest part of the battle.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: wysiwyg
Date: 26 Jan 10 - 05:28 PM

Not everyone finds waiting the hardest. Some prefer it.

Michelle, here we're still focusing on the most positive thoughts and prayers, "even if" and "whatever may be." Because when one gets right down to it-- it's still TODAY that one has and it's still TODAY that we must choose how to live. And today, no matter what the docs may say-- they still, really, only know about "today."

~Susan

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: jacqui.c
Date: 26 Jan 10 - 07:25 PM

Waiting with you Michelle, every step of the way. I remember how hard was the time between my operation and getting the results of the biopsy.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 26 Jan 10 - 07:49 PM

The staples came out easily except for a few around my navel which didn't surprise me...they've been red, irritated and oozing. No infection though, so that's good news. Now I'm being held together with Steri-Strips.

The pathology is not back yet. I have an appointment for next week.

They gave me a packet of information about ovarian cancer, good websites, diet, and more but I'm too afraid to look at it.

Also, they said to get an appointment IMMEDIATELY with my home Dr. to deal with this anxiety which hinders healing due to crying, sobbing, heaving, coughing, blowing my nose, etc. I called my local Dr. from the hospital (which is 2 hours away) and have an appointment there first thing tomorrow morning.

Also, I have more pain meds which I've been scrimping on and am needing.

It's been a long scary day for me. Both my surgeons were there, both upbeat but of course they don't have the information to give me. I've been told to concentrate on eating and working on this anxiety stuff (which I hope means a medication adjustment).   I'm now down 28 pounds since December and while I'd like to lose weight, this is NOT the way to do it and I KNOW I need to build up my strength for whatever is to come. I started drinking Boost.....a nutritional supplement drink and the Dr.'s said to go ahead and drink it at each meal.

I feel like I am living on nursing home food and take the same amount of meds to qualify living in one.

Anyway, I'm thankful I can eat SOMETHING, even if it's soft and bland and I'm thankful for the meds to help me get through this.

I'm also thankful for all of you.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 26 Jan 10 - 11:28 PM

Michelle,

Don't just talk to a medical doctor, find yourself a counselor or psychiatrist. They can do a great job in helping you set aside the anxiety. If you don't, it means you're not focusing on positive things, you're not looking beyond the now, you're not working on a plan. If you're focused on the fear, you're letting the cancer win, it is just that simple. So you need to cast out the fear along with the cancer.

Sounds like it is time to go sit in on the yoga class, even if you're not doing anything, just to get back to the breathing and to practicing some discipline in focusing outward.

Good luck--make that appointment, but ask about a counselor also.

SRS

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Tinker
Date: 26 Jan 10 - 11:59 PM

Hey there.... just to let you know there are folks here through the night as well.

Looking for a place to move forward.... something to busy your mind would be a good thing....

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: Janie
Date: 27 Jan 10 - 02:22 AM

Such a tough place to inhabit right now, dear Michelle. It is hard to inhabit the present moment out of worry or concern about what may be in the future. Especially when the present moment is painful or uncomfortable as surgery scars heal.

Remind yourself, gently, and without judgement, to be fully present in the moment at hand.


Janie

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: Sandra in Sydney
Date: 27 Jan 10 - 07:20 AM

more hugs as I can't add anything to what has been said.

Maybe just one bit of wisdom from my physio recently - she reminded me one reason my scar is still sore 12 months later (apart from the fact it is in my groin, just above the fold of my leg) - it's not just 12" long, it's several inches deep - duh! I never thought of that.

sandra

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: VirginiaTam
Date: 27 Jan 10 - 07:43 AM

Checking. I am still on watch and hoping for best possible outcome.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: John MacKenzie
Date: 27 Jan 10 - 08:06 AM

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: AllisonA(Animaterra)
Date: 27 Jan 10 - 08:54 AM

Holding you in love...

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 27 Jan 10 - 09:00 AM

Thanks for the update, Michelle. No news is good news.
Here in Maine the local hospitals offer all sorts of support groups for cancer patient, friends, and families. Everything from yoga and exercise classes to crafts and counseling. Maybe something like that is available by you. It may help to share your fears with people who are in the same place or who have been there and survived.
If you like, I will be happy to search out what is available near you. Just PM me some info on where you live, your hospital, and realistic travel distances.
If something appeals, go for it. If not, no harm done.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: kendall
Date: 27 Jan 10 - 09:04 AM

Well, I sure as hell hate waiting for the results; I always imagine the worst and that is a human trait. I would say that any normal person would be concerned.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: jacqui.c
Date: 27 Jan 10 - 09:10 AM

Still here dear.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 27 Jan 10 - 12:47 PM

No infection is very good news, now that I think about. It means your immune system is functioning well - a very good sign.

Still waiting impatiently for results and your doctors' plans for the next steps to Welldom.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 27 Jan 10 - 08:11 PM

I'm not enjoying the wait at all. It's scary and frustrating and at times, terrifying for me.

My visit to the surgeon yesterday went well and he answered some of my questions which helped to ease my fear.

The staples are out but I'm still having issues around my navel. This morning I went to see my regular Dr. for more help with the anxiety stuff (she gave me sleeping meds???????) and had her look at my incision. She took a sample of the yuck, re-steri stripped my belly and also gave me some antibiotics. I'm hoping that does the trick.

I am sleeping a lot lately.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 27 Jan 10 - 08:36 PM

Sleep can be a good way to turn off the anxieties. Your body needs to rest. And don't forget - the anaesthesia really does take weeks to get out of your system.

I wish I could take away the fear, Michelle. Unfortunately, until you know what the test results are, you can't cope and plan. The What Ifs set in.

The only suggestion I can offer is try to live in the What Is. You are safe at home. The surgery is behind you. You have a loving husband to hold you and help you. You can see, hear, walk, talk, read, sing, laugh, cry - you are in charge of most of your life. Focus on who are. That is real. Try to put away What Might Be. It isn't real, may never happen, and has no real place in today.

We are all praying and lighting candles and keeping your health and healing in our thoughts. Work with us.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: wysiwyg
Date: 27 Jan 10 - 10:21 PM

Amen.

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: Janie
Date: 27 Jan 10 - 11:37 PM

"Worry does not empty tomorrow of its problems; it empties today of its strengths." - Corrie Ten Boom

Of course you are worried and fearful, Michelle, but find ways to "turn the mind" away from the thoughts that induce the frustration, fear and even terror as much of the time as possible. Some activity that engages as many of the senses as possible in the present can be helpful. The idea is to find ways to tolerate the distress without making it worse. It is not about trying to banish fear, it is about finding ways to not dwell on the fear.

Sending {{{hugs}}} and caring for your well-being.

Janie

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: jacqui.c
Date: 28 Jan 10 - 07:15 AM

((((((Michelle)))))))

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 28 Jan 10 - 07:39 AM

Feeling very weak this morning...something new. I'm going back to sleep. So tired.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 28 Jan 10 - 07:53 AM

The wonders of sleep inducers. They make me feel stupid for 24 hours. But rest and sleep are just what you need. Pleasant dreams.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Tinker
Date: 28 Jan 10 - 10:31 AM

What Mary said.... sleep lets the mind work through it's fears and find places to put all of our concerns and worries without paralyzing the day with inaction.

Sending you love and concern to live the day.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 28 Jan 10 - 11:27 AM

Sleep is also a feature of depression, so don't let it take over your days. When you speak to your doctor, be sure to mention this. You might benefit from keeping a diary--eating, sleeping, medication, it will help you see patterns.

It's a gloomy day here, overcast with drizzle. I can understand wanting to go back to sleep on a day like today!

SRS

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 28 Jan 10 - 11:45 AM

Lily just got the sleeping aids from her doctor yesterday so I suspect more sleep is in order for a while. I envy you Lily. I love to sleep and can do it anywhere anytime. I should have a job as a mattress tester.
Are there any comedies you enjoy? Might be a good time to fill your waking moments with fun stuff. Laughter is wonderful medicine.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 28 Jan 10 - 02:24 PM

I missed that bit--yeah, I hear that some sleeping pills can cause a real groggy feeling. That happens to me if I take Benedryl full strength, even at night. By the next morning I'm still feeling it.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: wysiwyg
Date: 28 Jan 10 - 03:32 PM

Those sleepies wear off better if you do the whole length of sleep you really need. Even a half hour of waking too early can leave the sleepies running all day. Beware of over-riding that with caff-- wrecks the whole effect. (This has been true of every sleep aid I have used, and I think I have used them all at one time or another.)

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 28 Jan 10 - 07:03 PM

Home health here today...still having icky oozie issues with my navel. I've had 3 doses of antibiotics and am hoping that will help. In the meantime, my insurance company will be receiving a request to extend the home health visits as my incision is open and draining....and such an odd spot to tend to myself.

I did go back to sleep until about 11:30am when the phone rang, otherwise I could have probably slept a bit longer. No caffeine in my diet lately (no coffee...I know...hard to believe, but true) so I think my body just needs the rest.

Got to get out to WW today...felt good to see my friends. Received an award for having lost 101.9 pounds. Still can't believe it.

Only one crying spell today....a well meaning friend is being really pushy about the pathology of things and right now, I just don't even want to think about it. She was talking about chemo too....nothing horrible but enough to rock my boat a little bit. So....still not a tear free day but it was MUCH better today.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: jacqui.c
Date: 28 Jan 10 - 08:16 PM

You're doing well Michelle. Let your body decide what it wants to do and if that means sleep, so be it right now. That's when your system can use energy to heal faster.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 28 Jan 10 - 08:59 PM

Turn that phone OFF when you are sleeping, Michelle. Whoever it is can call back or wait for you to call.

WW must have been an "up" moment. Over 100 pounds. That is amazing. Congratulations.

Sounds like your friend is genuinely worried about you if a bit tactless. But if that was your only crying jag, the sleep is helping. One day at a time.

Mary

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 29 Jan 10 - 10:25 AM

I made a call to find out more information and register for the Look Good Feel Better Program that the American Cancer Society has. I had no idea how sad this call would make me feel. :(

My insides are gone and it's very probable that now some of my outsides are going to go too.

OMG.


:(

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: VirginiaTam
Date: 29 Jan 10 - 10:37 AM

Lilbit, don't think about anything but healing right now. You are worrying and that is not good for you.

Deal with other stuff as and when it happens.

Nuff said!

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 29 Jan 10 - 05:06 PM

Some of your insides are gone. So is the cancer. If the outsides go (although I don't quite know what that means) small price to pay for living a long happy life.Those of us with 100 lbs to lose think you are amazingly strong and beautiful.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 29 Jan 10 - 05:08 PM

Outsides = hair

*Sigh*

You are right, I am worrying about something that is ahead that I am unsure of. And Mary you are also right, it IS a small price to pay to live a long, happy, HEALTHY, life.

I had no idea it would freak me out so much.

(((((((((Thank you for the reminders of the good things in my life))))))

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 29 Jan 10 - 06:34 PM

And speaking of GOOD THINGS, guess what I found in my mailbox today? The sweetest little fairy and a head dress that looks like lots of FUN!!!!!

VT, you are too sweet and I loved the card!!!!!!

The fairy is sitting on my desk and I plan to play with the head dress tomorrow....I've never had one!!!!!

Thank you for thinking of me....you brought a smile to my face and I'm sure I'll be having some fun tomorrow too! Now....my sweet little fairy needs a name....Hmmmmmmmmmmmm.........

(((((((Hugs)))))))))

Thank you!!!!!!!!
Much love,

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 29 Jan 10 - 09:24 PM

I have to get shopping this weekend. I have a couple of things to send to people.

SRS

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: Sandra in Sydney
Date: 29 Jan 10 - 09:29 PM

sending more hugs

sandra

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: VirginiaTam
Date: 30 Jan 10 - 04:17 AM

Michelle having learned from the JacquiC shawl installment that your fav colour is green, wish I had sent the jade/sage green headdress.

Anyway, I guess you can put that head dress to some fun use.

Whew! what a relief. thought it had gone missing.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 30 Jan 10 - 07:55 AM

VT,

   I love just about all colors....I am a photographer at heart and know that it is ALL the colors of the world that come together to make this such a beautiful place!! I LOVE LOVE LOVE that you sent me a head dress....I've looked at them on eBay for Ren Fairs (and the dresses too) but never got one. Now I think I might spend some time looking at the dresses and patterns....I mean, I have HALF of the outfit now, right? *G*

Much love from Michelle who is going to church tonight wearing brown boots, black pants, a neon green turtleneck (maybe dark green), white compression stockings, a dark purple hat, a scarf of many colors and a purple coat!!!   See? Lots of colors!

PS. I can't believe you can do beading like that....they are so tiny....that is a gift in itself!

PPS. I've moved the fairy to sit with me...she's right beside my chair with her sweet, delicate wings! <3

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 30 Jan 10 - 07:58 AM

I think medications make you dream strange things. I woke up this morning dreaming about chemotherapy. In my dream they had to remove a 4x4 inch area of skin for each treatment.

*sigh*

Gross & scary.

I'm aiming for dreamless naps and sleep later today!!!

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: AllisonA(Animaterra)
Date: 30 Jan 10 - 08:02 AM

Dreams are often just manifestations of our fears. You are "shedding" the fears along with the cancer, and donning yourself with color and brightness and hope. Good for you!
love,
Allison

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 30 Jan 10 - 08:27 AM

Lily,
Only once did I take (read: was I allowed to take) Ambien. I had nightmares but they were in such wonderful psychedelic colors that I loved them. Until you mentioned your dreams, I had forgotten how horrific the dreams themselves were.

Hair - my neighbor in NYC had Hodgkins Lymphoma and underwent chemo twice for it. She never lost her hair. Go figure. Hats will help. But feel free to grieve if it falls out. And remember it will grow back. My niece had long straight hair. Hers came back in all curly and very beautiful.

Do not drive! It was the one thing my doctor harped in. Just getting into and out of the car can pull stitches. A fast slam on the brakes could put you back in the hospital. It is not worth the chance of prolonging your recovery.

I re-read this and I do sound very bossy. Sorry. And feel free to ignore anything that doesn't suit you at the moment.

SINS, in mothering mode.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: LilyFestre
Date: 30 Jan 10 - 08:57 AM

Sins,

    The pills I'm taking at night are not sleeping pills per say, they are more to help me relax so I can get a good night's sleep which SHOULD help ease the intense morning anxiety. I was skeptical but you know what? It's working and I am happy to not be balled up in a knot of fear sobbing until 10:00am or later.

   And the hair. I know it's vain but I don't want to lose it...I don't think anyone does....and at this point, for all I know, I might NOT lose it. Not only will I be more hideous than I already am but I have a life long habit of playing with my hair as a comfort....so there's a fear there of taking away something that is self soothing. So...I talked to my hair dresser and if my hair starts to come out, before it gets all scraggly, she is going to put it into lots of little pony tails and cut them off one by one. This will allow me to still be able to feel the softness of my own hair. I've looked at wigs, turbans, hair halos and the like....I don't know what I want in that line so I suppose it will be a wait and see kind of deal. The American Cancer Society has a program called Look Good Feel Better. These classes are run by beauticians and they have all kinds of wigs/turbans/etc for us to try on. They also will do make up tips and send me home with lots of makeup and I believe a wig or two. I had to register with the ACS and requested that my mom be able to come along. The woman on the phone didn't know if that was allowed but later she called me back to say that would be fine and that makes me feel better...to have someone along for support.

As far as driving goes, I ALMOST did some yesterday but decided I was tired and wanted to stay home. I'd like to go to church tonight but because church is about 40 minutes from our home, I'm not sure I'll be going. I hate to ask my husband to drive me there as he is on the road all week and is not interested in going to the service. I MIGHT drive myself. We shall see. The Dr. said that once the staples were out and I was off the pain pills, I could drive. We shall see.

I'm cold this morning (picture this: giant gray sweat pants, a long sleeved, long green and blue flannel nighty, a shawl around my shoulders and a blue blanket in my lap....lookout Miss America, you've got competition!!!!

I have been invited to a baby reception this afternoon and am looking forward to holding the beautiful baby Audrey!

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: Sandra in Sydney
Date: 30 Jan 10 - 09:24 AM

Michelle - lucky you can't see me heading off to the loo at a wintery folk festival - faded yellowy or blue ankle-length short sleeved summer nightie, black thermal pants & matching top, hand-knitted Nepalese rainbow wool socks, topped by my big black woollen coat!

I'll look even better next year as these 2 nighties are in the rag bag. I've made 2 new ones: apple green with white spots, & bright yellow with white stars.

One of my friends lost her hair a few times in her chemo, & had a great collection of wigs. She was known to haul off her wig & show off her new curls at appropriate moments!

have fun with the baby.

sandra

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 30 Jan 10 - 10:43 AM

Michelle, if you drive that far from home and get too tired before you get home, you're going to have to pull over and have Pete come get you, and someone else is going to have to drive him to where you are. It's going to chafe for a while longer, but when you're tired from something like this, you have to remember to pace yourself.

My browser wants to shut down. Better send this while I can.

SRS

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: katlaughing
Date: 30 Jan 10 - 11:02 AM

More mothering from here...please be sure not to lift the baby yourself. Let someone hand him to you and be very careful while you hold him. Just as with driving, any sudden movement, a natural lifting up to soothe, etc. would not be good for your incision.

Let's see, you've been home since Jan. 18th. Today is the 30th, so it's been a whole 12 days, not even two full weeks...you might want to slow down a bit, darlin'..for what you've been through 12 days is not a lot of recovery time for MAJOR surgery and to get the anaesthesia out. (That stuff can settle in your muscles for months.) IMO, no church tonight. Even seeing the babe is questionable.

Feel free to tell us if you get tired of the mothering.:-)

kat

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: SINSULL
Date: 30 Jan 10 - 11:06 AM

Hideous????
That comment made me think of the Getaway. The first night we are all at our best, a little tired from the commute but up and happy. Day 2, after stating up way past midnight we look a little less attractive. By Day 3, we are all tired and look it, slightly grubby from dressing on the run, and maybe a bit hung over. Outsiders would probably see a bunch of middle-aged messy people who ought to know better. We see only the beauty of friends sharing their music.

No amount of surgery, lack of sleep, crying or just feeling miserable could make you hideous to your real friends. Your husband feels the same way - grateful to have you home and alive. To yourself? That is something you will have to come to terms with. Your cancer group will help you.

With the loss and pain comes a knowledge of how beautiful and precious life is and how fleeting is superficial beauty. It will come to you eventually.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-
From: VirginiaTam
Date: 30 Jan 10 - 11:19 AM

what the other mothers said... I am echoing. remember that incision is not only on the surface... it is internal. things have been and will be shifting. don't do anything to encourage unnatural shift.

glad you like the gifts though.

Now I am off to do a happy dance in the declutter thread.

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Maryrrf
Date: 30 Jan 10 - 11:32 AM

Hey Michelle, I have not been on Mudcat much lately but am following this thread and want to add my support. A friend of mine had a similar surgery two years ago and is now fine - you will be fine too. Good vibes headed your way!

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: jacqui.c
Date: 30 Jan 10 - 04:32 PM

More mothering - give yourself time to heal properly and try not to take risks that might land you back in hospital. As has been said - don't lift th baby, have her sat on your lap and then taken off by others.

Treat yourself kindly, you're worth it.