Mamas Surviving Cancer... NEW THREAD -May - Mothering Forums
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#1 of 245 Old 05-02-2005, 05:12 PM - Thread Starter
 
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Thought I would get us started with a new thread...

How is everyone doing?

I am ok...dealing with my poor ds's shock to my hair free head...I really did not think he would respond like he is to it at all....

bbl

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
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#2 of 245 Old 05-02-2005, 05:45 PM
 
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Thanks for starting the new thread.

Yeah, my kids were pretty weirded out by my bald head. So was I, so I shouldn't be surprised that they were, too. :LOL I had no idea my head was so square, but I guess I've always been a blockhead! They've had over a month to get used to it, and I suppose it's gotten somewhat more normal. Still, around the house I usually wear a bandana or something because I hate catching glimpses of the chrome dome in the mirror. Once the stubble finishes falling out I'm going to let the kids put some temporary tattoos on my scalp for a few laughs.
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#3 of 245 Old 05-03-2005, 10:32 AM
 
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Solange, did you put this in "Natural Home and Body Care" deliberately? I'm thinking it might be hard for the others to find.
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#4 of 245 Old 05-03-2005, 11:04 AM
 
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hi there! the other potential problem with starting a new thread is that our old one will get buried away in the archives and our older discussions might be helpful for new mamas with cancer (and unfortunately there will be more women diagnosed like us) facing the issues we've already talked about. Is there any limit to thread length? If not maybe we should think about resuming the old one, as that way all our discussions will be in the same place. Although I like the "May flowers" Traci, maybe you could post a reply in our old thread with "May flowers" typed really big, to mark a new beginning or something!.....just an idea, whatdya think?
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#5 of 245 Old 05-03-2005, 12:25 PM - Thread Starter
 
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oh...no I did not realize it at all you guys...:
I wonder how that happened?...

do not know about page limit....

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#6 of 245 Old 05-03-2005, 12:30 PM - Thread Starter
 
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ok I pm'ed the mod to move it back to health and healing...

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#7 of 245 Old 05-03-2005, 12:31 PM
 
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Maybe if you pm the mod of this forum they could move it?
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#8 of 245 Old 05-03-2005, 02:14 PM - Thread Starter
 
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delphinus...it does not matter to me which we call "home"...... this thread or the other...

beat ya by a minute EF...lol...

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#9 of 245 Old 05-03-2005, 02:40 PM
 
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: Thanks!

How about this? I'll put a link here to the old one so that people can easily find it. The old one already links to this one.

Old thread:

http://www.mothering.com/discussions...d.php?t=242053
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#10 of 245 Old 05-05-2005, 12:51 PM
 
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Somehow, I missed the new posts. I kept checking my email to see if someone had added anything. I must have deleted the notification. Oh well..... Glad I found us again.

I think I might be developing mouth sores. I'm a week out from my third treatment, & I feel pretty good, except that I'm just plain tired.

How are you all doing? I think of you all so often.

Great big hugs & healing thoughts.
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#11 of 245 Old 05-06-2005, 05:39 PM - Thread Starter
 
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AuntieM hey if your are getting those mouth sore start gargling with baking soda and salt everyday all day long.....you can also get a BMX(benedryl/malox/and the last one I forget it is a numbing agent) mouth wash from your doc that is really good for the sores.

I had my 2nd to last treatment today and through visualization and positive thinking...I am feeling ok....the weather is to nice and the sun is very healing to me so I am making the best efforts to mentally win this round..

hope everone else is doing
well...

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#12 of 245 Old 05-07-2005, 10:46 AM
 
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Traci, glad to hear this round wasn't too bad. You are coming down the home stretch!

AuntieM, there is another medication besides the one that Traci mentioned that evidently heals the mouth sores faster. I haven't gotten them so far, knock wood, but the nurse told me about it just in case. She said it tastes pretty awful, but it helps if you can tolerate the taste. You might want to talk to your doc about it.

This is my good week before my forth treatment on Wednesday (which will be half way there, ya-hoo!). My newest side effect is that my nose is running all the time and my eyes water a great deal. Not such a big deal, but as Roseanne Roseannadanna says, "It's always something!"

The chemo has done the weirdest thing to my skin. I've always had very oily facial skin. Now it's got these dry, red, crusty patches. I've started using the oil cleansing method with coconut oil, which has helped a great deal, and has also cleared up lots of blackheads. I'm also treating myself to expensive make-up that I'd never spend the money on normally, as I'm a major league cheapskate!
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#13 of 245 Old 05-07-2005, 01:05 PM
 
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Hi everyone! Traci, EFmom and AuntieM, I will soon be joining you in the world of chemotherapy. I think I already mentioned that I will be doing AC Taxol dose dense. I start this Friday (the 13th!-should I be supersticious? maybe it's appropriate!--and for more metaphorical weirdness my oncologist's name is Warr!) I marked off all the sessions on my calendar and realized that my last treatment will be the full moon in August, which also happens to be my birthday!

Actually, while we're on the subject of metaphors, and this one is really bizarre, we live across the street from an elementary school and there were these two great hills side by side in the playgound--the kids all loved to play on them. I had never thought of them as breasts until the week that I was diagnosed with breast cancer, and a big bulldozer came and performed a double mastectomy on them (luckily I just had one breast removed) but they started to dig in the exact spot that my tumor was in, if our house was my head. Apparently they took them down because they couldn't see the kids on the other side at recess, which is so lame, couldn't one of the teachers have stood on the other side instead of gabbing and drinking coffee?!

Anyway it was very freaky and also very sad, as we always used to go and sit on the hills at night and watch the stars and moon and nighthawks. Anyone else experienced these kinds of strange crazy cosmic metaphorical happenings?

Sending love and hoping all of you are not in too much discomfort with terrible side effects...

xoxoxjanet
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#14 of 245 Old 05-07-2005, 02:33 PM
 
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Also, I wanted to hi to Myrrhmaid, Momof1sofar, Owensmom and Booberry (Celeste), was wondering how you're all doing?

And to Daciaperfect (Darlene), Twopeasinpod (Maya), Loveharps, Rainbowbird, Shanleysmama (Melanie), Arduinna, and Foreverinbluejeans, (hope I'm not leaving anyone out!) check in with us again if you ever want to talk....

Anyone new out there, please join us if you'd like!
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#15 of 245 Old 05-09-2005, 10:32 PM
 
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Hi, All. The salt/soda rinse seems to have put at bay whatever was brewing in my mouth. Amazing stuff.

I know it's just about time for another chemo treatment because I'm starting to feel fairly good again. This one will put me at the halfway mark. That is unless, as one of my nurses suspects, my onc opts to do post sx chemo.

I hope I am not just kidding myself with this, but I have this strange feeling that my life after cancer will be better than my life before--that is as long as I can cope with the fear. Anyone else feel this way?

EFMom, I'm mostly used to my bald head, but every once in a while, I shock myself with my image in the mirror.

Great big hugs of comfort & healing thoughts to you all.
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#16 of 245 Old 05-10-2005, 01:19 PM
 
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Hi everyone,
Thanks for thinking of me, delphinus. I'm feeling down today because we just lost one of the kids on my sarcoma list. Her name was Jaya and she was only 14. She successfully fought cancer as a child, but the radiation caused a sarcoma years later and that was too much for her body to fight. She was such a beautiful soul, and passed peacefully with a smile on her face. But it is still so hard to accept.
I'm sorry to be such a downer, I know this thread is meant to be positive and supportive. I'm just so angry and sad today.
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#17 of 245 Old 05-10-2005, 01:39 PM
 
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Momof1sofar, I am saddened by Jaya's death. I cannot think of anything else to say right now. Well, I can, but none of it sounds right to me.

We are here to support eachother through all of the ups & downs. Please know that we are here for you.

I'm getting help typing from dd, so I should go now....

hugs
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#18 of 245 Old 05-11-2005, 11:21 AM - Thread Starter
 
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auntieM and momof1sofar I am so sorry for the loss of this dear soul, but yes we are here for each other good or bad.

I amazingly made it thru this treatment with no ill effects. I used visualization this time around and contniue to envision the white diamonds spinng and glowing inside my body protecting and renewing my cells.

delphinus....since my diagnosis I have been more aware of things like you mention myself. I think the illness just makes us more aware of what is really important in our lives and brings them front and center.

auntieM ....life will be better!!!!! You will be feeling like a new body and like I said above with illness comes much soul cleansing, renewing, and general well being. You live better!

I have to go family calls...

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#19 of 245 Old 05-11-2005, 03:15 PM
 
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(((:jaya))
thanks for being here and sharing, mommas!
I'm feeling great! which means i need another treatment-tomorrow. i cut 27 inches off my hair-a 22 inch braid-my hair is sooo short!! i did labs yesterday and have been tired. i'm going to up my iron supplement.
i'm on a strict diet too. anyone else? wanna share recipe/meal ideas? or is that another thread?
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#20 of 245 Old 05-11-2005, 03:20 PM
 
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Quote:
Originally Posted by delphinus
Anyone else experienced these kinds of strange crazy cosmic metaphorical happenings?
now that i'm smoking mj, I'm reluctant to share because you might think i'm wacked! :LOL
that is such a trip about the hills! Life is full of such mystery! thanks for sharing.
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#21 of 245 Old 05-11-2005, 04:59 PM - Thread Starter
 
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myrrhmaid..I have to ask...does the mj help with the nausea?
I am so sorry about your hair..wow..that is very long!

As for diet, I was not put on any restrictions, but I ate a lot of veggies and fruits before my illness;so now I am just really adding more of those to my diet.

BUT the blasted chemo has made me crave soda-something I normally never drink, and I have awful cravings like cheeze pizza, or wendy's chicken spicy sandwhich. The days after chemo, I feel like a nasty hangover and the only way I feel better is by eating. Just like I need something in my stomach or I will barf if I don't. I do not feel nauseated after I eat. SO thanks to that, I have gained weight and the last time they had me in the hospital I put on 10lbs due to the fluids they pumped me full of and the steriods they gave me. So I am not happy. I am about 10-15+ to much. :

I am curious thou for those of us who have had to turn to bottles..now with the weather warming up do you still give your babies warm bottles or do you give them a little cooler? I went to a Pampered Chef party and this mom there said she fills a pitcher full of formula and keeps it in the fridge. I did not ask her details, but I am curious how she warms it up? I pre-make my bottles in the morning for the day, but do not add the water until dd is ready for one. What are you guys doing?

bbl

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#22 of 245 Old 05-12-2005, 02:17 AM
 
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That's so funny about the cravings. A couple of weeks ago, I just had to have french fries!

Myrrh, do you think the MJ helps? I'm glad that you made a decision about your hair. I hope that you are pleased with it. They did tell me I couldn't eat sushi. I love sushi! I'm curious, what are they telling you to do for a diet? Is it just well you are doing chemo?

Solange, I'm sorry that you are upset about your weight. My sister calls it "being fluffy." I think that's kind of cute. My understanding is that weight gain is very normal--still a bummer, but normal. As far as the bottle goes, dd is old enough that I've switched her to milk rather than formula. I use mostly cows milk, but often fill the bottle half full of either rice or soy milk. I was surprised, but she takes it cold, no problem.

On a bit of a sad note, I had one little bottle of milk stored in the freezer that I pumped before I had to stop nursing. After 2 months, I thought I could give it to her without causing too much confusion. When I thawed it, I discovered it had soured. I'm sad.

Round 4 done today--the last of the A/C. Next time, it's on to Taxol.

Also, Solange, I'm glad I'm not the only one who feels like life is better. I think that I just appreciate it more. I still get upset by silly things, but not nearly as often. My sis is going to get the book you suggested as a gift for my birthday. I'm looking forward to it.

Delphinus--what a cool/strange/fascinating story. Amazing.

I wish I could just grab you all up & give you great big hugs. I find great strength & support in you & I am truly grateful!
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#23 of 245 Old 05-12-2005, 04:26 AM
 
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Quote:
Originally Posted by Solange
myrrhmaid..I have to ask...does the mj help with the nausea?
Quote:
Originally Posted by AuntieM
Myrrh, do you think the MJ helps?...I'm curious, what are they telling you to do for a diet?
The mj helps with everything! It puts a big smile on my face and I get distracted in some kind of silliness or task and we giggle and i'm grateful. mj makes me feel well enough that I have been surprised at my level of functioning. I've been kickin butt doing the laundry and housekeeping. I even hand weeded the front fence. It helps me distract myself from the stress and limitations and I can just trip on at what level I am able. I cleaned off the front porch and thanks to dh~the~garden~is~In!
The only thing they told me about diet was don't lose weight. I've lost about 5 pounds but that was some weaning weight that immediately dropped.
I have gone complete vegetarian. I read recomendations in linda page's book healthy healing and the prescription to nutritional healing by balch. They said meat protein feed tumors. It was rec. to have broiled fish 3 x a week after recovery.
I eat beans and rice and corn tortillas. Lots of shredded vegies-beets, carrots, jicama, cabbage. We love artichokes, me and dd sit and eat them together. Lots of raw nuts, almonds and sunflower seeds. Limited dairy. Fresh cheeses like cottage, mozzarella and farmers. Yogurt and kefir. I'm eating some tofu and eggs. Spinach, brussels, cauliflower, asparagus, zucchini. Lots of organic carrot juice and orange juice. We eat oats and homemade ww pastry flour waffles and pancakes with almond butter, bananas and blueberries. We get this bread called alvarado st. bakery sprouted wheat bread-it is sooo good-it makes the best french toast! We eat lots of salsa too-tomato and fruit ones.
Quote:
Originally Posted by Solange
I am curious thou for those of us who have had to turn to bottles..now with the weather warming up do you still give your babies warm bottles or do you give them a little cooler?
I give her a cold bottle of organic cows milk. She loves it. If she eats cereal with me she drinks the rice milk. She thinks the bottle is ridiculous and drinks some them insists that I take the lid off so she can just use it as a glass. I are really having to be more on the ball with the variety of foods i give her. We seem to go on blueberry jags-where we'll eat a whole bag in one day! And popcorn. she loves the beans I make and she calls them poopoo beans. she also loooves brown rice. It's nice to have her sit on her own and eat. I can feel her new sense of independence. she's asked several times about nummynummynummynummys then she gets all bashful and smiles all sheepish and says all gone. I still wonder if there is any chance to relactate and continue or if i'm just having some level of denial here with the loss of bfing.
My white counts were low this last labs so dh was taught how to give me a neupagen this afternoon after he ran home from work to pick me up and drive me down there(my car broke down). I have to self inject for 10 days and do labs again at 1 week. I'm feeeling a bit uh like funny bone kind of funny....
my sis had to self inject-she said it was easy after the 1st time-she did it in her belly. so I guess if my little sis could do it i can do it also.
;grouphug:
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#24 of 245 Old 05-12-2005, 09:38 AM - Thread Starter
 
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myrrhmaid
That is it .....I am moving to Cali....pass to you right please

how old are your babies?
You know my homeopath told me that she would prefer dd (9months) to be on organic raw cow's milk and I thought she was kidding. We have dd on organic soy forumla but it makes her cheeks sandpapery and homepath says it is from the soy. So she wanted me to switch to the milk so I thought she meant the organic dairy based formula version of the soy we use. DD could not tolerate it at all...so I switched back to the soy, and asked my homeopath again what she meant. She said raw organic cow's milk. Not homongized(sp?) or pasterized. I asked where do I get that and she said it is illegal...lol....but I found a place where I can get it, so if you guys are doing this too I guess I will get in touch with this farm. I just thought no cow's milk til after 1 year of age. I am worried though about the cost factor. Homeopath said we can use goats milk if we cannot afford the cow's.

auntieM

.....sitting here feeling very fluffy ..

go to the doc today...feel like I have some congestion back in my lungs again....

gtg

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#25 of 245 Old 05-12-2005, 10:04 AM
 
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So sorry about the death of Jaya.

I also had my last dose of AC yesterday. The tumor continues to shrink, but at a slower rate. On to Taxol and Xeloda next time. So, I am half way there, which is just The Taxol/Xeloda combo has some new, different and wacky side effects, but doesn't that just make life interesting.

I have also had the weirdest cravings, some for Wendy's, fries, etc. as some of you have mentioned. I also get weak sometimes and the only thing that makes me feel better is eating. I'm also craving big, expensive steaks, which is not something I'm normally that drawn to. I made dh take me to the Outback for the biggest, most expensive filet mignon on the menu! I think it's because I'm a bit anemic from the chemo.

I am jealous about the MJ. There's going to be a bill introduced in my state to make medical MJ legal. It just frosts my pumpkins that it isn't now. It makes sense only from the perspective of the pharma companies that can't make money off it. There are rumors that my republican governor, who has presidential asperations will veto it if it does pass. :

Strength and healing to all!
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#26 of 245 Old 05-12-2005, 02:50 PM
 
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It's a crime that access to helpful and healing herbs are illegal. We still struggle in Ca with busts and it's supposedly legal here! We had a case where the cops were taking license plate #'s from folks who shopped at a place that sold grow lights. They were very embarassed when they busted a couple growing, gourd forbid,-violets!!!!
I'm having some pain this am from the shot yesterday. I have to go in for chemo today even though my counts are low. I guess I won't be getting another shot today even though there is an order for 10 pre-filled syringes. I wonder if i iced my belly if it would be more comfy to self inject?
Solange, my ds is 15 y.o. and I have a 23 mo. dd.
We actually use goat and cow's milk. We get the goats from a neighbor. I do bring it to 165 degrees in a double boiler before consuming or making kefir out of.
O.K. Smoke out at my house! Come one come all!:
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#27 of 245 Old 05-12-2005, 11:50 PM
 
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Myrrh, are you doing the wbc booster that is given over several days? I'm taking the one that is administered every two weeks. One thing I've noticed is that if the nurse does & gentle stick & slowly pushes in the liquid it is MUCH more comfortable that when it is given quickly.

My dd is 16mo. On the milk topic, I've found that the best price around here for organic milk is at Trader Joes. The whole milk is pasteurized, but not homogenized.

EFmom, I wound up going to Wendy's for my fries too. They are perfect with a frosty. I've felt bad for them lately since it appears that the finger thing was a hoax. It's cost the business & more importantly the workers a lot of money. Sad.

DD is in need. She missed her nap today....

Big hugs!
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#28 of 245 Old 05-13-2005, 12:49 PM
 
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AuntieM I'm doing the neupagen. To raise my white blood count. I'm at the stage where I am highly suceptible to illness-they called it somethign-i can't remember! I found out yesterday my insurance doesn't cover neulasta-which is only 1 shot ~vs~ 10!:
o.k. since we are confessing food indulgences-I ate a whole pint of ben & jerry's chunky monkey on the way to the clinic yesterday! I shared a couple chocolate chunks with dh-but that's it!
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#29 of 245 Old 05-13-2005, 11:20 PM
 
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whew! I better catch up! well, day 1 of chemo-AC, so far a little anti-climactic, but I guess that's a good thing, although I've been really hungry, I guess from the steroid anti-nausea drug that they gave me as a preventative, and now I'm feeling all that food I ate is now heading for the wrong exit. man I really don't want to throw up but maybe that would make me feel better. I'm feeling a little wiped out too, I want to sleep but they said I might feel revved from the steroids.

myrrh and auntieM, like you guys I'll also be doing something for the white blood cell count, they sent me home with 10 neupogen shots to self-inject, on days 2-12, then it's back for round 2 of the AC in 2 weeks. is this chemothing going to get worse? you don't have to answer that, I think I can guess.

Traci, my baby is also 9 mths, we do heat the formula, or donated breastmilk slightly, just by plopping the filled bottle in a container of hot tap water for a couple of minutes, but he doens't mind it cold.

auntieM, I'm so sorry about the soured milk. I also had been saving my last little jar in the freezer, and decided to give it to him on mother's day. I was terrified that it might be sour. luckily it wasn't, so I went to the garden full of tulips and sat there at twilight while he drank it. I balled my eyes out, it was very emotional for me as I knew it was the last breasmilk of mine that he would ever have. But just so you don't feel too bad about missing out on a similar event, it didn't exactly go down the way I was imagining. I had these romantic notions that he would look up at me when the bottle touched his lips and burst with love and excitement and recognition of that long-lost taste. Alas, the little rascal was completely disinterested and I think a bit irritated by my inexplicable emotions, and crawled off to eat some dirt instead of finishing it. I guess things sometimes don't work out the way we think they will!

EFMom I so enjoy your poignant wit and humour, you have such a great way of putting things.

momof1sofar, we're all here for each other, through the good and the bad. I'm sending you lots of love.

Peace Jaya

Love to everyone,
janet
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#30 of 245 Old 05-16-2005, 02:45 PM
 
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Thank you, ladies, for your support and peaceful thoughts for Jaya. I think her death was particularly poignant because it came just days before the group marked the 1-year anniversary of another child's passing. Losing anyone is hard, but the young ones are hardest.

I'm following all of your updates with interest, and sending lots of healing vibes your way. I saw my onc today, and I don't have to go for another checkup for 6 months. And maybe no more MRI's unless something causes concern - thank goodness! I don't mind the chest x-rays but the MRI's get old quickly.

Going forward with hope...

Jaya, Allie, Jared, Brandon, and the others who were just too young to be taken...
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