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

Subject: RE: LilyFestre - Cancer-Seeking Chemo Is on Target!
From: wysiwyg
Date: 11 Mar 10 - 11:01 AM

Hey Michelle,

During last night's Lenten service, I was thinking last night that in a weird way, you have graduated from this thread. I would love to see how YOU would start a new one for the next phase of this journey. What is that phase?

Does the laptop have a CD playing drive?

~S~

Subject: RE: LilyFestre - Cancer-Seeking Chemo Is on Target!
From: LilyFestre
Date: 11 Mar 10 - 05:00 PM

Hmmm. Well, that's something to think about. I imagine it will take me a day or two to do that.

Bone pain started today and am using a cane to get around.

Michelle

Subject: RE: LilyFestre - Cancer-Seeking Chemo Is on Target!
From: SINSULL
Date: 11 Mar 10 - 08:07 PM

Michelle,
At least this time you know what to expect. Go with it, lady. The rest of us are by your side.
Mary

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Sandra in Sydney
Date: 12 Mar 10 - 12:57 AM

sending virtual hugs cos physical hugs might hurt

sandra

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: AllisonA(Animaterra)
Date: 12 Mar 10 - 06:40 AM

Love, love, love, love, love...

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: maeve
Date: 12 Mar 10 - 06:44 AM

Good morning, Michelle.

m

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 12 Mar 10 - 02:27 PM

The bone pain has intensified today and I overdid a bit this morning. As a result, I am in my jammies, taking my pain meds and have been napping on and off. I think I might just work my way upstairs and call it a day.

I have an injured kitty and he is sitting with me...two peas in a pod we are.

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: jacqui.c
Date: 12 Mar 10 - 02:53 PM

Lots of good wishes and love coming from Maine melove.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: SINSULL
Date: 12 Mar 10 - 02:56 PM

I wouldn't share your pain meds with the kitty. But it must be nice to have fuzzy soft company and the occasional purr.
M

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: katlaughing
Date: 12 Mar 10 - 05:07 PM

Remember that article earlier this year or late last year? It was in Morticia's thread and was about scientists proving that a cat's purr is at a certain vibratory rate which heals up bones. It was really interesting.

Resting up is a good thing. Sleep well and may the pain be fleeting..kat

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 12 Mar 10 - 07:50 PM

But don't shave the poor kitteh!!!!! :~)

LF, when you want it, I ran across a source today for "local" henna, and a nice Indian man who can probably connect you with real, authentic henna artists, if Pete still plans to shave in tandem with you (or has).

Also numerous vegetarian frozen entrees-- all delish and Indian. You probably already know Indian cuisine has special digestive-aid properties.... the prop. speaks sugar-free lingo too.

And if you already knew this man-- shame on you for holding out, you hussy! :~)

~S~

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 13 Mar 10 - 01:14 AM

Up listening to the wind howling outside, watching the sky flicker in orange technicolor as a distant well is being flamed off and wishing we had a bathroom on each floor of this house!!!

I very well may get a henna tattoo on my head and would be interested in who you are talking about Susan! It won't be anytime soon though as I have developed an infection on my noggin called feliculitis (sp) which means the hair follicles are infected. The Dr. ordered up some meds today but I was in no shape to stand and wait for it in the pharmacy so I came home without it and am using Benedryl cream on it for the night.....it itches wicked and burns. Good times.

I'm napping on and off, pain meds not really working as well as I'd like....hopefully tomorrow will be better.

Goodnight all.

Sweet Dreams.

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Sandra in Sydney
Date: 13 Mar 10 - 02:52 AM

wishing you the same, accompanied by contented kitty purrrrrrs

sandra

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: katlaughing
Date: 13 Mar 10 - 03:10 AM

Some aloe vera gel, chilled in the fridge, might help with the burning sensation or witch hazel. Hope you sleep well despite being uncomfortable.

Lots of {{{{{Michelle}}}}} from Colorado.

luvyakat

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: VirginiaTam
Date: 13 Mar 10 - 05:32 AM

Maybe oatmeal made up very thick, put on head wrap in soft towel, leave for 1/2 hour rinse with cool water. Also a cold pack on the head, Darlin' Will ease the burning and itching.

hugs

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 13 Mar 10 - 06:35 AM

LF, this may be the time for a pee bucket, or if you prefer to test ours you can borrow our portapotti. You'd be surprised how really nice it is, and it's already got the waste-digesting chems on board. Get it by calling Fr CS's cell to coord. cuz he'll have to load it up, but we could drive up your hill or put it in Bonnie's van for ya. We have source to get you one if you like it. Consider it a tiny composting toidy. It is not gross.

~S~

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 13 Mar 10 - 08:57 AM

LOL! Now that's a vision for first thing in the morning!

I have a handicapped bedside potty and will ask Pete to set it up if ABSOLUTELY necessary. The hospital sent it home with me initially as I needed handles to stand up and since they didn't have just the handles, they gave me a free-standing potty. It's funny you should mention it because I was thinking about it yesterday....just how much pain do I need to be in before I'm willing to ask Pete to dump such a thing as I am in NO shape to carry much of anything down the stairs. I still think EW.

I finally did fall asleep for 3 straight hours, waking up once to take pain meds that I now cart along with me so I don't need to make added trips. I wish I had thought of the aloe or oatmeal yesterday as we have both of those on hand. This morning we are going to the pharmacy and Walmart for the essentials. I'm either staying in the car or going to use a scooter. There just is NO way I can walk around Walmart today. At the moment, I'm trying to work up the OOMPH to stand long enough to take a shower and may well just do it seated from the side of the tub (we have a shower hose thingyamabob). My head is caked with Benedryl which served it's purpose for the night. EW.

Anyway, I am looking ahead and trying to keep in mind that this pain, although really hard to get through, is only temporary and it should begin to let up by tomorrow night or so. My Dr. told me the only side effect that should increase in duration is the tiredness as my blood counts get knocked down more and more with each chemo treatment.

Ok. Pete has finished his morning outside chores which means I really do need to find that OOMPH to get in the shower.

Love and Hugs to all,

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Dharmabum
Date: 13 Mar 10 - 09:32 AM

Sending positive,healing,thoughts your way.

DB.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: jacqui.c
Date: 13 Mar 10 - 10:10 AM

Michelle - those scooters are great. I occasionally get some bursitis in my hip area and that makes it uncomfortable to walk around a big store. I have no compunction about using a scooter when that happens.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: SINSULL
Date: 13 Mar 10 - 12:05 PM

Well don't that figure? You get past the pain of losing your hair, start to enjoy the new "look" and it gets infected. This is just not fair.
Honest, Michelle. It is OK to bitch once in a while if you feel like it.
Meantime, you are my hero. Amazing strength through all these insults.
Mary

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: VirginiaTam
Date: 13 Mar 10 - 12:17 PM

what SINS said about hero... me too. Wish I had the nerve / whatever to use those scooter thingies. There are plenty of em in Sainsbury's but I just continue to walk/stagger long after my hips seize up. Think I am afraid I will make a fool of myself for not being to operate it properly.

Maybe I should just take on on a joy ride to get some practice.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 13 Mar 10 - 02:17 PM

PLAY iz scooter!

LF, the portapotti we have does not need emptied till you get strength back, and NO GROSS-- that all stays sealed up. Your call! (Ya oughtta see it, let G know when).

~S~

Subject: RE: LilyFestre - Port is "on board" chemo continue
From: Ebbie
Date: 13 Mar 10 - 07:46 PM

A few months before he died, I got my brother to use a store scooter one time. His comment:This is kind of fun.

If and when my time comes I don't plan to be noble about it- I'll make use of all tools I come across.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 13 Mar 10 - 08:59 PM

I was looking at some online articles about massage for people going through chemotherapy and found that there are lots of opinions about it. Personally, a very gentle massage sounds like heaven to me at the moment. A hot tub with water jets sounds equally wonderful. Anyway, one of the sites I was looking at had pictures of cancer patients receiving various massages. All of the pictures showed people who were pale, bald and looking miserable....so dull that they looked to be fading away. That struck a chord with me tonight as I feel the way they look.

    I took an afternoon nap and let too much time pass between pain meds and as a consequence, I woke up in severe pain. My husband has been wonderful about getting whatever I need, heating up my many corn pads and just hugging me when all I can do is cry. I'm just having a rotten go of it today. I had wanted to go to a 7:00pm church service but at 6:00, I could barely stand up...there was no way I could get myself to church. That bummed me out even more. Not only did I miss church but I missed seeing friends....people who I don't get to see much of anymore. I'm so tired of sitting in this chair or of being in bed. I miss my energy. I miss my friends. I miss making plans and KNOWING I'll be able to follow through. I miss being on top of things...I have gotten very forgetful, especially in the short term area. I miss my hair. I just miss my life today and am feeling weighted down with exhaustion.

    When I read some of your comments about being so up and positive or an inspiration and today I saw the word hero twice....I can't believe it. I am so damn tired and feel like I'm fading off into nothingness.

Tomorrow will be a better day.

Michelle who needs to lean right now

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 13 Mar 10 - 10:14 PM

... I missed seeing friends....people who I don't get to see much of anymore....

Sorry, didn't record this one, and all you missed was Pete and Sandy coming in wearing bright green Irish wigs. Ed got a photo. Sandy's was shiny foil like an Egyptian hairdo, very cool. She's so shy but she actually rocks.

Bob C was there, and ya know what, he could use a phone call (so could Linda). Or a card.

Sometimes when we lean on the right Person we find we have strength to let others lean, too, and when that happens (when you're ready), you get Strength, too.

Hang in there. You're DOING IT.

~S~

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 14 Mar 10 - 12:19 AM

I think I just have too many meds going on in my body and I can't get myself straightened around today....too much pain and too many meds can do that to a body.

Susan, I'd be more than happy to send Bob (and his GF, is that Linda...I can never remember her name) a card if you could send me his address. I do not have a directory. I love getting cards and know how much they can brighten up a day and equally, I feel good when I send them out too.

Some absolutely EXCELLENT news in my life, Veronica is coming to visit next weekend!!!!!! For those of you who don't know, Veronica is a young lady who spent a few years of her life living with Pete and I. We haven't seen her in at least 4 years and I am SO EXCITED to see her!!! *HAPPY DANCE*

Well, so I'm up after another 2 hours of sleep. I made myself some dinner...yogurt and a Kashi bar and here I am, wide awake.

Humming some of Allison's music..........

Goodnight All,

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 14 Mar 10 - 12:47 AM

It's good to see that I'm not alone in this. I'm with the chick and the oxycodone.....

Bone Pain


Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Sandra in Sydney
Date: 14 Mar 10 - 01:26 AM

very inspiring

sandra

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: AllisonA(Animaterra)
Date: 14 Mar 10 - 08:05 AM

Darling girl, you just keep being real about your feelings- pain, joy, exhaustion, progress- we love all of you and still think of you as a hero!

(I'm now knitting myself a slouch hat, so we will be twins!)

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: VirginiaTam
Date: 14 Mar 10 - 09:52 AM

Maybe this will help

TENS machine and pain management

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 14 Mar 10 - 10:35 AM

I woke up this morning felling HAPPY!!!!! It's been awhile since that's happened, I usually have to sit for a minute and focus myself on something outside of my diagnosis. I was thinking about Veronica when I woke up and how soon she will be here!!!! Also, the bone pain has subsided quite a bit...YAY!!! I hope this means that it's about over with for this cycle!!!!!

I went downstairs to find my husband boiling potatoes for home fries and kneading dough for bread. Mmmmm....smells GOOD in here! I spent most of the last hour cleaning out a basket of old catalogs and magazines. The basket also contained a few notebooks and books too.

In one of the notebooks, I found a bunch of poetry I copied by Rumi...stuff that just makes me smile. And on this spring day where the ground is mush, the birds are singing and our bull is joining in with the chorus, I found this....and it made me smile so I'm sharing it with you:

The Music We Are ~ Rumi

Did you hear that winters over?
The basil and the carnations cannot control their laughter.
The nightingale, back from his wandering,
Has been made singing master over all the birds.
The trees reach out their congratulations.

:) Happy Spring Day Everybody!

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: SINSULL
Date: 14 Mar 10 - 11:45 AM

You made me smile, Lily.
Veronica must be quite a young lady now. I can't wait to hear how she is doing. She has been in my thought and prayer list for some time now.
Good Moning! Happy Daylight Savings Time!
Mary

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 14 Mar 10 - 12:35 PM

LF, I don't have a directory here either, LOL. We both need to ask Lisa to send one. I'll PM you what I have for Bob and you can let me know if the card comes back as undeliverable! :~)

Will wee see Miss Vee this week, or is that HER call?

~Susan

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 14 Mar 10 - 03:01 PM

Just back from an adventure at Walmart and the new Tractor Store. Lots of places to sit in the Tractor store so that went well. At WallyWorld, I used a scooter....not only was it fun but it handled well and I got all of my shopping done (Pete helped). I saw lots of people and I think I spent more time visiting than shopping.

It was good to get out!

Benefit of chemo: I can only eat 2 (at the most) Milano cookies at a time...where as I used to inhale a good portion of the bag!

And Veronica? She is 17 now and gorgeous. Her birth mother has made sure that her life is a mess but I think she's handling herself rather well. I don't know if she'll want to come to church on Saturday or not....I'm hoping she will but yes, it is her call! I can't wait to hug her close!!!!!!!!!   

Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Stilly River Sage
Date: 14 Mar 10 - 03:51 PM

Keep up the good work, Michelle. Taking advantage of those high spots will help the process pass faster.

SRS

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: Sandra in Sydney
Date: 14 Mar 10 - 06:49 PM

ditto

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 15 Mar 10 - 07:10 AM

Re: Vee/Sat

I bet you can figure out how to convey for us how much we would LOVE to see her, without it being any pressure. GET PIX!!!!

~The CSs

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: SINSULL
Date: 15 Mar 10 - 08:24 AM

I bet that first hug from Veronica will do more good towards your healing than anything else in the world. Those years of stability with you were not wasted, Michelle. She is stronger for it. Enjoy every minute with her. And yes - we want pictures.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 15 Mar 10 - 08:34 AM

Very restless and emotionally draining night last night. I kept dreaming that all the people I love had cancer. I dreamed the Pete had to get a port and being that that procedure was especially hard for me, that freaked me out. I woke up crying 4 times last night. FOUR.

Something with me is so off (let the jokes begin)....very weepy. I know it's the meds. It has to be the meds.

I need a decent night's sleep. SOON.

Michelle

PS. About Veronica and photos....are you kidding? LOL It'll be worse than prom night here with all the cameras going off!!!! And that hug? I can't wait for it!!!!!!!!!!!!

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: AllisonA(Animaterra)
Date: 15 Mar 10 - 08:51 AM

As you know, dreams reflect the thoughts and feelings and anxieties rolling round our minds. And the meds can magnify the feelings and the tendency to dream!

Hang in there, sweetie-

Do you know about Dinotopia? Wonderful books with wonderful illustrations, but the best thing about them was the blessing spoken on parting: Breathe deep, seek peace.

It is often my middle-of-the-night mantra.

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 15 Mar 10 - 09:50 AM

I finally signed up for Flickr and have downloaded just a few pictures this morning...thought you might like to see them! My friend Kate likes to call these: Grace Under Fire (which I love!).

Lily's Photos

Be warned! Goofy Bald Person Ahead!


Michelle

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: wysiwyg
Date: 15 Mar 10 - 12:28 PM

I know YOU plan to have pix but make no mistake WE want them too. But only IF Veronica is willing to be seen. I'll settle for a pic of you LOOKING AT her-- she can take that one! :~)

~S~

Subject: RE: LilyFestre - Port is "on board" chemo continues
From: LilyFestre
Date: 15 Mar 10 - 08:31 PM

I received a package today from a local women's cancer group...it contained a small angel made of baby yarn....kinda of like a corn doll but made of pink and white yarn that is SO SOFT. :) I feel loved.

Also, I added some photos of Veronica today...ones from when she lived here a few years back and of more recent ones that she has shared with me. I will definitely share photos from when she is here...no worries about that!!!

Lily's Photos

Love you guys!!!!

Michelle who listened to Allison's CD today....the first one you sent....besides the singing, I absolutely love the drumming!

Subject: RE: LilyFestre - Port is
From: katlaughing
Date: 15 Mar 10 - 09:25 PM

Michelle, thanks for the pix. The one of you with the port is stunning...so much expression on your face. You are so beautiful, esp. your eyes and smile...there IS much grace there. Amazing woman is what you are, m'dear.

Veronica looks beautiful, too. Please do NOT feel any pressure about her visit, pix, etc. WE can be patient! :-) If you only have her for the weekend and, depending on how you feel, if all you can manage is to be home and visit with her, I think that would be wonderful and good for you and her. Sometimes being alone with someone we love so much can be best, esp. when it's only for a short time.

luvyakat

Subject: RE: LilyFestre - Port is 'on board' chemo continue
From: Rowan
Date: 16 Mar 10 - 12:38 AM

Well, LF, the after effects of your port looked a bit more serious than anything I'd come across. With luck you'll get used to the meds and their weep-inducing abilities may fade. It's hard to predict because every type of cancer is different (along with their relevant meds) and for every ten people with the same-named cancer there's likely to be ten variations on how they affect those with that cancer.

A bit like adolescence, or aging or learning or most other things that are important to us.

But you sound, overall, like you're on a winning streak; all power to your elbow! Again!

Cheers, Rowan

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Sandra in Sydney
Date: 16 Mar 10 - 12:46 AM

The one of you with the port is stunning...so much expression on your face. You are so beautiful, esp. your eyes and smile...there IS much grace there.

what Kat said! But I couldn't have put it so well. I was thinking that would be the picture to be carried in a wallet (pocketbook)

sandra

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: Severn
Date: 16 Mar 10 - 02:52 AM

One day in the shower, getting ready to go to the Wharf Rat shanty sing in Baltimore, my hair started coming out in uneven clumps, so I headed out to get it all shaved off. I put on a big Irish tweed cap and went to the sing.

I introduced my head to the public in song. They gave me the second song of the night and I changed the words to the shanty I was belting out in the last verse where I swept off my cap and sang:

I'm a bald headed son
Of the Wild Goose Nation

Haul away, haul away,
haul away, hold HARD!

And I got this way
From my Chemo medication

Haul away me boys,
Haul away!

There exists a photo taken by Catter wincingdevil that shows the hat just pulled off of my newly bald head and a number of the crowd gasping. There was another picture taken at the next weeks sing that had me singing with wincingdevil and Brad Howard from Pyrates Royale, with the three chrome-domed men dubbed "The Annapolis Pawn Shop Trio". I'll try to find a way to bring them up from wincingdevil's site. Unlike you, Michelle, I didn't have a port to show those seadogs and shedogs at the Nautical Sings (and others)...

Just unveil it with a flourish and act proud.

Of course, in a couple of months the timing between chemo sessions ended up as such that I stopped being able to make sings, for the most part, as the dishrag days increased.

And yes, of course, renewal time came up and my driver's liscence still has a picture to remind me, so I keep a much hairier picture on a Visa Card opposite it in my wallet.

More chemo sobby-stories to come....

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: VirginiaTam
Date: 16 Mar 10 - 03:36 AM

Sandra - I left much the same comment on that picture. Who can look at the scar when your eyes are hogging the scene.

Michelle has the most wonderful eyes.

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: VirginiaTam
Date: 16 Mar 10 - 03:38 AM

oops... I meant Kat

OK nobody post next... save number 700 for Michelle

Subject: RE: LilyFestre - Port is 'on board' chemo continues
From: LilyFestre
Date: 16 Mar 10 - 08:03 AM

GO TAM!!!

   I won't post!!!

Severn, I LOVE the way you shared your bald head with the world. I pretty much keep it under a hat unless I'm at home, with family or ONCE I braved an out of town dinner with no hat. The only person who really looked hard at me was a man wearing a really bad wig!!! LOL

    The port incision has healed up nicely and I may be able to go swimming within the next couple of days! The nick where the tubing went in hasn't quite healed up....it's still ugly but it is healed enough to hit the pool!

    Rowan...I was pretty battered when they finished and OMGosh I was SORE.....only in my neck area though. The port area was tender but nothing like the pain in my neck. Thankfully, that has subsided. The tubing lets me know it's there if I look up too fast or stretch my chin to high to reach for a kiss from my husband, but otherwise, it's doing well AND really does make a BIG difference (positively) in getting my chemo. :)

    The picture of me showing the port scars is kind of haunting to me. I know I still have weight to lose but my body and my face look so thin to me...and pale. And yeah, I think my eyes, in that photo, are expressing concern. My mom tells me it doesn't look like me anymore.

    Had another bizarre dream last night. This time I was at the hospital and they were going to plunge a thick needle into my heart for a biopsy. I got up off the table and ran away. Then I woke up for a few hours! Feel back to sleep and had a much better dream about a friend who passed 11 years ago....it was good to see him!!!

   It looks to be the beginning of a beautiful spring day and I'm feeling good!!!!!! YAY

Enjoy the day everybody!!!

Love to all,

Michelle