Mamas Surviving Cancer... NEW THREAD -May - Page 12

[Solange]

Hey Friends...
I am so happy to see you all here posting with good news and strong mindsets...

Myrrh... I know these last treatments get rough..I remember I just wanted to stop and would pretty much start barfing as soon as I stepped foot into the office. What wortked for me was someone told me to Just keep thinking; you have done 11 treatments..and that is amazing!~and try not to worry so much on how many you have left..hard it is but these ones will go just as fast as the first 11 did...you just try to hold on to that. I am glad you dh is home to help you...

AuntieM it's ok ..you have an emotional day..I know I have had my share..and do not be afraid to share with us ...ok????..I would feel awful to know you stopped typing because you did not want share what you were feeling with us for fear of of making us feel sad or something..kwim?

Thanks owensmom!

EFmom Great news on you pathology!!! I cannot believe you got it back so fast. I had my bio on Friday and my doc said we would be lucky to have the report back Monday.....

Janet glad to hear from you....hope your next rad is quick and um..sugar free....lol....

I am going to NY next week on the 29th and will see the doc at MSKCC on the 30th.
I have talked to him already and he is awesome. I cannot wait to get there and start treatment. Crazy to be excited about getting chemo, eh...lol...

He will send me home on the 30th with a return date which I will not know until the 30th. SO we are praying, praying, that all will work how it is supposed to as far as housing goes; because that does not give me much time to sign a lease.
I am still taking my children with me and my mother is coming. My husband cannot come until Dec as his work will fire him for missing so much work at this point. And that is not an option for us now. There is some talk amongst family about me taking the kids, but no one has any solutions as to what would be done if they stay here in Ohio without me.
I know I can be with them while I get salvage chemo but when it comes time for my transplant I think it will be different.
SO for 2 months out of this whole ordeal I still get to be with my children and then the 3rd month maybe here and there. Much better than just leaving them high and dry for 3 months and coming back to major attachment issues with my DD. Yes, yes, I know what the big picture here is...my health ...which this treatment will keep me here for years....but part of my health depends on me not being stressed out with worry about my children and who they are with or hearing them cry over the phone...

so that is it for me..
I have to go...
I do not know if I will have www while I am in NY...I will try to let you know as soon as I do so you do not wonder about me..

[myrrhmaid]

Hi Everybodee!! Just a moment I can take to let you all know you are in my heart, thoughts and prayers. I did real well this time round until the 5th neupogen shot-then I had some vomiting. I can tell when my wbc are low-I get a weak bladder. Nothing like puking while tinkling all over yerself-ugh! OH! The HUMANITY!! I also had 3 'dates' with the fleet enema bottle-don't know who enjoyed THAT more!: o.k. 12 down 4 to go! I can hardly believe it!!!! I had a pulmonary function test last week and I went from being 20% above average to average. Time to break out the bong! Now the dr. wants to do a ct scan to see if there are fibroids are not. Does anyone know if there is a way to treat lung fibroids? I'm really reluctant to get this test if it's only going to tell me I have them and we can do nothing about it. That radioactive iodine is painful! I'm taking bilberry herb for my veins-which are blowing left and right-thrombosis- and very hard and painful. I think it is working but I have to stay on top of the dose since we keep assaulting the poor buggers!
Love ya all! Take care and keep in touch as you can!

[Solange]

gosh girls so quiet here...
Hey Myrrh.....you are alomsot done..I don't know anything about a natural fighter for the fibroids...I just pray you do not have them so it is not an issue for you....

I leave Oct 14th for my new home in New Jersey-West New York. I start treatment that following week.

check in girls...

[auntieM]

Myrrh, what did you find out about the fibroids? I hope that you are ok.

Traci, what have you been able to work out concerning your kids? How long will you be in NY/NJ? Will you be able to stay in touch?

My last rad is scheduled for next Thursday. I am so glad. I'm no longer in chemopause!! I am so relieved.

Radiation is exhausting. I cannot believe how much it has totally knocked me on my butt!

How is everybody?

[Solange]

AuntieM I will be in NY for 3 months and my kids are coming with me. My mother will be with us and my husband will be with us this first week. Then we will be alone for a week and then a family member is coming out for a week. We kinda have people lined up like that to help us.
I cannot be without my kids for three months. Could any of you? For me it is a huge part of my healing.
Yes, I will be taking my laptop so I will be in touch here.

I am a bit-well a lot upset with my oncologists' office here in Ohio. They have really screwed things up(again). My whole transition seems to be a pain in the woo-woo for them -well my oncologists' phone nurse who handles all the paperwork anyway.

My dr in NY sent them a fax last Wed. which they received at 3:40pm-I have it in front of me- and the statement at the top of the letter clearly states NY's intent of having my PET done on the 17th and then treatment the 18th. We needed my local office to help set up eligibility testing here , bending with my insurance company, on those tests so they would give us the go on the PET in NY(NY said my PET here sucked-as well my oncologist never did a PET to begin with here and they are confused to how he could even compare my last two with what?).
SO my office did not get anything scheduled until yesterday and Monday. NY calls yesterday saying we need the results pronto b/c my insurance needs to review them with the clinical trial scheme to prove that I am worthy of treatment!!! I call my local dr office and say look we need these results asap and my local office nurse proceeds to tell me "Look NY asked for some fancy pants blood work and most of it has to be sent out. There is nothing I can do to get it expedited and they will get to it when the get to it." Of course I was wigging out at that time and not thinking clearly at all..but once I clamed down I thought, you know what?, if my local nurse knew that the ordered blood work was so "fancy pants" as she put it, when she got the order list last Wednesday, then why the didn't she send me that day or the next to get it done? It is an outpatient proceedure-no appt needed-just walk in and hand them your sheet.
SO this morning I am going to call back Ms. Condescending and ask her exactly that-b/c she does not know I have a copy of the order list with the statement made at the top to her from my nurse in NY. I am going to tell her I have it, tell her I see what time the fax came in, and also remind her that my doc here did say that he was happy to help NY in anyway he could with things like this and if she feels differently then maybe I need to let the doc here know.

You cannot tell me she has no idea that my insurance would need these results. NY says they would know that they deal with stuff like this all the time-dr. office's.

SO needless to say my day yesterday was very stressful...I mean basically I am moving Friday to NJ for treatment that my insurance company has not even approved yet and I am scheduled for treatment on the 18th.
Why it should even be an issue to how I get treatment is beyond me and it should not even be on my plate to deal with! How the do you put a price on your head for your life? "oh, well, insurnace company, I am good for $xxxx amount but after that cut me off."
I have cancer for God's sake..not that common cold give me a break
and Why my local office doesn't get the sense of urgency here is beyond me

[EFmom]

Oh, Traci, I'm so sorry you have to deal with this crap on top of everything else. It sounds like your oncologist's office at home has just brushed you off since you are going elsewhere for treatment. : I'm so glad to hear that you have people lined up to come help you in NJ. I hope your new doctors are wizards!

AuntieM, besides being tired, did you have much in the way of side effects from the radiation?

I have my first meeting with the rad oncologist on Thursday, right after my first post-surgery appointment with my medical oncologist. Now there's a fun day! But I'm so eager to get going with this stuff and get it behind me that I don't care.

Myrhh, the 12 down part is great! I'm sorry you are having such a rough time with the side effects. I love the "humanity" statement. Ain't it the truth?

Love to all!!!!

[auntieM]

Traci, I hope that you get some satisfaction from Nurse Not-Helpful. It's so frustrating when people are snippy. It's been my experience that most docs are very concerned with customer service. You should definitely tell someone how upsetting your experience was.

EFmom, I had my 27th treatment today. My skin is red & tender. If dd bumps my breast, it hurts--mild, but painfull all the same. I am way more exhausted than I was with chemo. The house has gone to poo-poo. I wore a sleep bra when I went out, but the elastic on it is now bothersome under my breast. It has been helpful to have a few snug, cotton tanks & loose shirts. I was told to be very gentle & pat the skin dry. I'm also really careful to rinse well in the shower.

Where are all y'all?

[EFmom]

Where are all y'all?

AuntieM, do you mean that geographically or temporally? Like where the hell have you all gone? If the former, upstate NY. If the latter, at doctor's appointments, where else?

I had my first appointment with my radiation oncologist today. I'll be doing 33 treatments and will start next week with all the positioning, testing, etc. Not looking forward to being exhausted again, with a sore breast, but I am looking forward to giving this beast every deterrant possible.

I loved the radiation oncologist. Why does it keep surprising me to meet doctors that I really like? Before the cancer, I've had a few that weren't as bad as others, but never ones that related like actual human beings.

[delphinus]

Howdy mamas! well things have been up and down, as usual. I've done 18 rads, 7 to go, I've got a pretty bad itchy red rash on my upper chest and back, serves me right, we went away last weekend and I accidentally spent an hour splashing around in the super-chlorinated pool with my kids and then hung out in the whirlpool, oops. It seemed like a good idea at the time, it was great fun. We went to niagara falls last sunday--as part of my ongoing quest to go to awe-inspiring and life-affirming places (hadn't been since I was a kid-wowee them falls is big!)

And then on monday we drove to the buffalo airport to pick up our new kitten!! I know, like why the hell didn't we just go to the toronto humane society?! I know it seems weird to actually buy a kitten (from kentucky no less) but umm, well, see, it's like this, our beautiful beloved cat Mog, who died last fall at 16, was this amazing dog-like cat with extra toes--he could hold a pencil! Anyway once you have a polydactyl cat, it's hard to go back, and they're not that easy to come by. So we met this amazing polydactyl maine coon kitten online and just knew he had to be part of our family! He's pretty amazing, sooooo cute and really smart, he is already learning to fetch! He's 14 weeks old, but already pretty big, he'll be about 18 lbs full grown. Meow!!

So that's all wonderful, however I'm completely EXHAUSTED, pretty much all the time. I was thinking the other day that I would probably have to check into a hotel by myself at un undisclosed location to get the proper rest that I need right now. Not exactly an option! Oh well, At least I can fantasize!

I better pack it in, I wish I had more time to write. Hey, do any of you feel like you have no time to do anything but actually don't really get anything done?!

Anyway, I love you mamas, and I'm thinking about everyone all the time! xoxox janet

[EFmom]

Janet, congrats on your new kitten. We had a little gray polydactyl cat who my husband used to describe as "his favorite pet in all space and time." I think the new pet will be great fun for your family. We've been enjoying our new puppy so much.

Hope your skin feels better!

[auntieM]

EFMom, I think maybe I meant electronically or virtually.... Just wondering how Y'all are doing.

Tomorrow is my last rad treatment!!!! I am both thrilled & a little scared. I feel like there are so many things that I want(ed) to do once I started feeling better. I hope that I have the self-discipline to do them & the good sense to forgive myself when I don't.

More to write, but dd is waking...

[Solange]

hi-just popping in to say I am here in NY Sloan Kettering...doing fine.
EFmom are you here at MSKCC??

[EFmom]

HI Tracy, glad to hear you are doing well in NY. No, I'm upstate, in the Albany area.

I know people who have gone to Sloan and have raved about the place. We lived in NJ for about 5 years, and of course, Sloan was everybody's first choice in the area.

I have to go for my rad dry run in about 5 minutes. I had the simulation on Wednesday. Could they make that room any colder? I haven't warmed up yet.

Hugs to all.

[auntieM]

EFMom, ask for a blanket. They always offered me one at my hospital. They may even have the yummy warm ones.

Traci--glad you're settled in. How did the first treatment go? Did you get everything straightened out with your labs & such?

Ooooh, a kitten. I would love a cat. DH likes cats, but he doesn't really want to have one living in the house. I think it's a combination of the litter box & farm boy sensibilities.... Maybe, one day he'll give in to his daughter & agree to a cat. It will never happen for his wife. :LOL

For you radiation mamas--the biafine cream really helped me. I carried it in my purse & slathered it on right after treatment. Toward the end, I started to be really uncomfortable under my breast. I was being "desquamated." The skin was beginning to break down (squamous cells). Anyway, be sure to mention any skin changes to your nurse/doc. I almost didn't. They suggested an OTC astringent soak that seems to be doing the trick & I stopped using anything that might make the area moist.

DD is in need.

[myrrhmaid]

so good to hear from y'all! I don't have much energy right now but I just wanted to pop my head in and say "HEY"!
I'm in awe of the strength, bravery and fortitude of us all! :
Thanks for being here and sharing!

[delphinus]

hi beautiful creatures!! hey I have a quick question for AuntieM & EFmom, what are your feelings about PET scans? They're not part of standard follow-up for breast cancer here and if I wanted one I would have to pay for it, although there is a subsidy available and my parents have offered to help as well. I'm thinking I might get one, mainly because if canada does buy more machines and makes the scans standard for breast cancer patients in the future I would have something to compare it to, like a baseline I guess. Any thoughts?

xoxo janet
p.s. we named our new kitten "Kip" (no huge deep meaning or anything, just liked the sound of it, kinda happy & cheerful)

p.p.s. if I haven't said it lately, I think everyone is doing SO WELL!!

[auntieM]

Hi, Myrrh!!!

Janet, I don't know about PETs specifically. I did come across an "after bc book" that summarized a few studies on whether scans make a difference in over all survival in the event of a recurrence. The studies reviewed by the book indicated that scans didn't make a difference in survival time. That being said, the author noted that many patients and doctors alike wanted to have them. Bottom line--you have to make a decision based on what is right for you.

Have a great weekend, Dear Mamas!

[EFmom]

Hi Ladies,

Janet, I don't know too much about PET scans, either. I've got a whole bunch of doctors in my dh's family. I'll ask one of them about it the next time we talk.

I've had my first radiation treatment and my first Herceptin infusion. I had pretty intense chills the night after the Herceptin, which I guess can be a side effect, but pretty minor compared to chemo. I'm going to get soooo sick of seeing that hospital by the time radiation is done!

Kip is a cute name! Hope he's settling in nicely. Our not so little puppy is weighing in at about 50 lbs, and four months old. We're doing puppy kindergarten, which has been kind of fun, but I worry Gromit is going to step on a Pomeranian and squish it!

Love to all!

[auntieM]

What the hell was I thinking. I just browsed through the breastfeeding forums. I should know better than to go there. ACKKK!! I would love to be nursing dd now. Because of the hormonal nature of BC, I just cannot convince myself that relactating would be safe for me. We are still bottle feeding & that seems to help meet her suck & cuddle needs. I do worry a bit about her having too much dairy... Blech!

Anyway, how are you all doing? You are in my thoughts and prayers.

Tracu, how is the new treatment/home away from home?

Myrrh, are you hanging in there? How many scheduled treatments left?

EFmom & Janet, how are the rads treating you?

Love to you all!

[EFmom]

AuntieM, re the bf issue.

I'm done with week 2 of rads. So far, it's been fine. I feel good, and have no skin issues yet. Going to the hospital every day is a great big PITA though.

I've started going topless this week. Yes, I left my wig, Fluffy, at home. My hair is about three quarters of an inch long, and curly. I look like a poodle, but any hair is good hair, as far as I'm concerned. I actually got my first haircut of 2005 yesterday. I'd say the stylist took off less than half a teaspoon of hair, just the weirder random tufts, but still, it felt good to get a cut for some reason. She kept poking at the top dispiritedly and commenting on how much fun we can have with it when it gets a bit longer. I've never had curly hair before, so I'm not sure how to deal with it.

How is everyone doing?

So, ladies, do we want a new thread??

Hugs to all!