Starting Chemo, November 2013 Group

Bec65

Inks, your little girl is adorable!  What a great photo!  I hope you feel better.

Amazon, I want your garden!

BigT16, I hope your mom is okay.  Is she close enough that you can see her?  My mom was in the hospital a few weeks ago and I just couldn't get there.  It's hard.

Lisa, I'm glad your legs are a bit better.  Is your appt. on Wednesday for your simulation?

Wallymama, I was the middle kid too.  My brother is eight years older than I am and went away to boarding school, so I really don't remember living with him.  But, he and my younger sister had and caused so many problems that got all my parents' attention, that I learned pretty early on to deal with stuff on my own. 

I have a couple funny things for everyone: I have to confess that I initially got the willies about FB and how much everyone would see about me.  Really, I did!  Then I realized -- duh -- that you all actually know MORE about me than ANYONE.   Is it too far PFC for me to keep blaming things on chemobrain?  (Smrlvr, sign me up please!)

Second, so I think I've mentioned that I check the mirror pretty frequently for an eyebrow and eyelash check.  I also check for the one beard hair I've gotten for years and regularly pluck.  So, in all this checking, I noticed that the regular fine soft hair also seemed to be coming back on my face with a vengeance.  In fact, I practically have blond mutton chops!  DH kindly suggested that maybe this means I've gone through menopause and am not producing estrogen anymore.  Could it be?!?!?

Happy Easter and Passover!

inks

BigT - so sorry about your mother. I'll be praying for her. Let us know how she is doing.

Amazon - I have always loved crocuses but those are some great color combinations. The curcumin I take is just a Vitacost house brand with bioperine. After I got that one I noticed that the Doctors Best brand at Swanson Vitamins was better price, that's the one I will be getting when I run out. I think I may continue taking curcumin even after the rads to prevent a recurrence .

wallymama

In the BGC for the last time. Just waiting to get hooked up.  I both want this crap over and I dread it at the same time.

smlrvr, great flowers. My hubby would love that particular kind. 

Inks, beautiful daughter.

Bec65. Not only do we know more about each other than just about anyone else, but I tell you guys things that I don't tell hubby. How's your mother?

Time for my poison. He everyone has a good day.

wallymama

Poster my granddaughters made for me this morning.

lisa137

BigT, keep us updated about your mom when you can. Will be praying for you both in the meantime.

Wallymama, congratulations on this being the final time they poison you. From my own experience, in a lot of ways the final round was the worst because with every side effect I felt like "But I'm supposed to be DONE with this," and it's caused me no end of angst and b**tching and moaning and complaining. I'm 3 weeks PFC today though, and can say that things are getting better. Verrrrryyyyyy sllooooowwwwwlllllyyyy getting better, but definitely getting better.

Bec, the real benefit of the facebook group over this forum is that while anyone with an interest can read this thread, and it's all searchable within Google (hence why I've gone back and deleted certain posts after sharing them with you guys,) the facebook group is "secret" and no one who isn't a member can read it or even know it exists. It's true what you say though: there are things I've told you guys that I haven't even told my husband simply because this is something that unless you've been through it, you don't "get it." It's not that my husband doesn't want to really understand or doesn't try, because he does, but that's just how it is. A year ago I didn't "get it" either.

I had the busiest weekend in a long long time; we spent Saturday afternoon/evening at mom's house for my nephew's 6th birthday party. Spending time with my family is always fun, if a little bittersweet; my stepdad's health is failing and I wonder every time I see him if it will be the last time. I was completely exhausted when we got back home though, and then yesterday afternoon we loaded both dogs into the truck and went and spent a couple of hours with my husband's parents, then brought the dogs back home and went back out again to have dinner out with them (the in-laws that is, not the dogs. lol.) By the time we got home the second time it was all I could do to climb the two steps from our garage into our den. Needless to say, I slept REALLY well last night (with the help of a couple of swallows of Children's Benadryl lol.) Almost a solid 9 hours with two brief trips to the bathroom and a couple of minutes of semi-awakeness when my husband came in to tell me "bye" around 6:30 or so.  So yeah, an exhausting weekend, but a nice one, and probably good for me overall because of getting out of the house so much more than I had in the last few weeks. 

Oh, and on Friday my father-in-law came over and he and my husband built a cat patio for our cat. I am SO happy about this because it means that *technically* the kitty litter box is now OUTSIDE. I expected it to take our cat at least a week to be willing to go in there and use it; he's 10 years old and has never been outside since he was a tiny kitten, other than being outside briefly when we take him to the vet and when we moved from our apartment to this house--and at those times he's wrapped in a towel and I'm carrying him like a baby. But, my husband used wet cat food and treats to lure him in, and he's using the litter box in there, we've already moved all his food in there, and I don't expect it to be long before he's spending large chunks of summer evenings lying on his Snuggie in there observing the world.

Here's the outside of it, and it's built so that it can be easily taken apart into manageable pieces and reassembled someplace else if we ever decide to move.

And, the inside, showing the catflap leading through the window back into the house, his litter box, food dish, and comfy snuggy to nap on. It rained the day after they put the thing up, and we check it out and it stayed dry as a bone in there, so he should be one happy cat, now.

NorthwindsGS

Yay Wallymamma!

You look great!  I have my first rads Session at one.  Time to go zap some renagade cancer cells!  Not sure what we are doing about the Interferon.  Going to see a specialist next Tuesday in Madison. Will go with whatever he decides.

Toni, where are you?

NorthwindsGS

Lisa, that is a awesome cat house.  Now I want one for our Tiger Tail.

BigT I hope your mom is okay......

Did anyone else start their Tamoxifen before Rads?  Also, can you take Ibuprofen with Tamoxifen?  I wanted to start the Cucurmin however was also told not to use it with Tamoxifen.   Maybe I should stop the Tamoxifen until after rads.........

lisa137

Bec, I forgot to answer your question about my appointment on Wednesday with my RO. I have NO IDEA what the appointment is for. The lady I talked to said "consultation," and that's all she told me. I reckon I'll find out when we get there.

wallymama

Last chemo finished. Yeah for me!! Although I am feeling a bit queasy. That may just be the Olive Garden my daughter and I had after infusion though.

MRI scheduled for May 1st. Then the BS as soon as the MRI scans are ready. Hoping for surgery as soon after that as possible. Like the next day, LOL. Getting rid of Big Ugly is the new goal. Not sure yet though if it shrank enough to do the lumpectomy, which of course is now my choice. But either way, I want to be able to say I HAD cancer.

Also got a list of recommended follow ups. MO every 3-4 months for 2 years, then every 6 months - 1 year for 5 years. An Aromatase inhibitor for 5-10 years (don't know which one yet, but I did read about one that shows more promise for post-menopausal ILC). Imaging, mammos, and labs per the MOs request. Though originally I was told 4 weeks of daily rads, it might now be 6 weeks if it hasn't shrunk enough. Oh, well, any of that has to be seriously better than the BGC. And hopefully I can do the rads at the hospital that's just up the road instead of across town or downtown.

I'm planning on being very near to 'normal' in four weeks. Maybe that's just a dream, but I think goals are important and that's my goal.  

Need to take drugs now, and nap. If this week is like the last BGC week, the bed is where I'll spend about 18 hours a day.

Still, I'm feeling like I may finally be getting this monster licked!!!

Bec65

Wallymama, I'm so happy for you that you're done with this chapter!  I could "hear" your determination for the rest of your treatment -- congratulations!  I think femara is the AI you're thinking of, btw.

Lisa, I'm NOT going to show my kids your cat's new abode or they will insist we do that for ours.  It looks like every housecat's dream.

Northwinds, how did rads #1 go?  Uneventful, I hope.

BigT16, how's your mom?

Palameda

3 months past final infusion, and I think I've enough hair to pass as a very butch dyke!

Wally: Good for you! After this, how can anything else be hard?

Amazon, I do like your flowers! I may be in california, but my flowers don't grow anything so sweet! So sorry about your husband. not fair.

Becca, hope your trip to LA went well with a good outcome.

Inks: you know how cute she is!!!

Ummmm I'm excited about the Facebook group but didn't get an invitation. Smrlvr, is your fatigue slowing you down, or did I get put in the troll category? See how fast insecurities can grow?

I'm learning to pace myself. I cannot work out several days in a row and expect to have any energy left. I clearly need a day off in-between. I do find that I've got days where I feel absolutely fine! I refuse to wear hats and scarfs now.

Amazonwarrior

I had my first radiation treatment today. I was under the machine for good 45 min positioning, measuring, taking x-rays plus the treatment. The actual RT time was only 5 min. The staff there was friendly and helpful and that helped ease some of my anxiety. 

So one down, 24 more to go! I am still feeling fatigued from my last chemo, so I can't even imagine what's it going to be like down the road!

Lisa: Your cat must be very happy to have such a fancy patio!

Wally: Yay for finishing chemo! I know you still have a number of treatments ahead of you, so I'll be cheering you along the way. 

Pat: I liked your description of your current hair look. LOL At least you have something to speak about.  My hair is coming, but very, very slowly. I would love to have the butch dyke look soon so I wouldn't have to wear my itchy hot wig or a scarf. I am however growing very fine blond sideburns!!! The irony of life! Pacing yourself is definitely a good idea and BTW did you try the sushi yet after PFC? As far as the FB page, there is no troll category here. LOL Just PM smrlvr and you'll be included. 

lisa137

Pat, I think Smrlvr wants everyone who wants to be in the FB group to send her a Private Message here on this site. If you've already done that, then I'm assuming she's just super busy. I'm pretty sure that no one in this group is in the troll category.  lol

Amazonwarrior

all: What cream/s or oils did you use /are you using during your RT? 

Was/ is it effective?

smrlvr

Pat, I did get your PM re the Facebook group, and yes, I am exhausted.  I usually post on my iPad, and for the group I have to use my windows computer since some people gave me email addresses and not a name I can use. For some reason I can't add people with emails on the iPad.   It takes so much energy to open that computer because it is so slow to start.  So I am waiting for more people so I can get everyone at once.  Also, some of you PMed me to be included, but I have no way to contact you on Facebook unless I get your Facebook name or I think email.  I need to try the email thing.  So pat, you are not troll status, but it feel like a troll.  My body is physically exhausted from working and radiation and trying to exercise.  I am actually in physical pain at the end of the day from teaching.  Then I try to walk and it gets worse.  You would think that exercise would make my muscles stronger, but they hurt!

Wally, congrats on finishing chemo.  I hope the side effects get better for you soon.

I had another meltdown in front of my RO yesterday.  He just brings out my emotions. I just feel so exhausted and I just want to curl up in bed and DH doesn't cook healthy foods so i have to cook after a full day of work.  Four more rad treatments to go. Kinda scary.  I just hope this fatigue eases up soon.

NorthwindsGS

Beca65, my first and second rads went well.  Goes pretty fast.   While being zapped all I could think of was something my sister in law said this weekend about her friend that is going through radiation also. She stated he is doing fine besides for being a little "crispy".  All I could think of was Crispy Critters while the machine hummed.

Amazon, I am using Aquafore.  The tech girls said to use coconut oil.  I am going to buy some next shopping trip and see if it works.  She said it comes as a solid and melts in your fingers as you rub it in.

Amazonwarrior

My RO recommended Glaxal base cream and Lubriderm -unscented and lanolin free. I bought some emu oil and going to use it. 

Has anyone used any of the above?

BigT16

Thanks for the positive vibes for my Mom.  She lives 2 hours away from me.  I difficult being the oldest daughter and so far away.  My other siblings are further away than I am. She's wheelchair bound and functions with 1/3 of one lung due to diaphragmatic hernia 2002 collapsed her lung.  My Mom's of uses an oxygen converter unit 24/7.  It appeared to malfunction and my Mom couldn't breath and her oxygen saturation was about 70%.   Once in the ER and on their O2 machine everything went back to normal and was sent home late Sunday night.  A member of the ER staff called the medical company and let them have it.  The medical supply company haven't been doing there weekly maintenance on the machine.  A tech had to be sent out on Easter evening to fix the converter.  I told my Mom to send the company the ER bill.

Wally-Congrats on finishing Chemo.

QuirkyGirl

amazon - I use calendula and its worked beautifully.  I'm five weeks in and my skin is holding up well.  It's not slimey like the Aquaphor.

Palameda

Amazon, my RO said absolutely NO creams until he said so, until then cornstarch only. The idea being that cornstarch applied 6 times per day would cut down on friction. If you google the cream situation as I did (since I was concerned that everyone else got to use creams, was my RO an outlier) you'll see that the US NIH has looked at studies and they basically agree that creams don't do any good except that patients like them since they feel they're doing something. Once "skin breakdown" occurs I was directed to use aquaphor, miaderm and then silvadene with dressings. So, I think you can use anything you want that your RO allows. There's a lot of not allowed during rads, like any antioxidants. I looked up (trust, but verify) why and it was clear: patients who used antioxidants had less skin damage during rads, so felt better- but their cancers came back undeniably more frequently, so in the long run they felt worse!

A little discouraging: I managed to get through without lasting neuralgia, but my myalgia is bouncing back. Pain. Increasing. Again. Just. Like. During. Chemo.

wallymama

Can't say I'm feeling good, but I'm certainly better than the last time. One more rant about the crappy effects from chemo. My youngest daughter got t-boned by a girl that ran a red light yesterday. She's not seriously hurt, just a lot of muscle strain and her shoulder tried to separate. But I felt too lousy to go to the hospital. Her man travels around town a lot for his job and it took him a while to get there She was scared and alone and I couldn't do anything. Soooooo glad that this part is nearly over. She my be nearly 32, but she's still my baby and I should have been there.

Lisa, what cat wouldn't love that catio!

Pat, hair looking good. You've got almost as much as Ellen now. Sorry you're having more pain. My APRN changer my pain meds a bit and I haven't had any leg pain for a couple of days. Knock on wood.

BigT that's horrible about your mom's machine. I sure hope that company does a better job now. It must be very hard to live so far from her. I am so very glad that my mom spend her last 3 years living with us. It was nice to have her here and no one had to worry about her.

Tome for a nap. Hope everyone has a good day. Or at least a less crappy day.

smrlvr

Amazon, my RO said 100% aloe and aquaphor only.  So far so good but the aquaphor is greasy so I wear old to shirts under my clothes.

This weekend I will get on the old laptop and add people to the fb group.  I can't pull myself out of bed now I am so tired.  My radiation therapists said it is normal at this point to have flu like symptoms with body aches.  They recommended I listen to my body and rest instead of walk after work.  I enjoy the exercise but I can't move after so I guess I should stop for,a while.  They said this could last a few weeks to a month after treatment.  I am just glad the way I was feeling is normal.  I was beginning to think I was really falling apart!  Work also must be taking a lot out of me. 

Imhope everything is going well with everyone.  Wally, sorry about your daughter.  I hope she is ok. BigT, I hope your mom is ok.  I saw my,parents for Easter, and they are really slowing down.  It is sad  to,see them get old.

lisa137

Smrlvr, I am so sorry you're having such a rough time with the exhaustion. Get all the rest you can!

I had my consultation with my RO today, and consultation was indeed really all it was. I don't think we talked about anything we hadn't already talked about in September when I was there before, but I guess I threw their whole machine out of whack when I went to another cancer center (because of Dr. Rockstar) for my chemo.  I'm also not entirely sure how organized they are: I got one call from them this week and the first thing the lady asked me was if she'd already talked to me this week, and then she proceeded to ask me some questions to make sure their info was up-to-date, and I'm thinking, well wouldn't you have already known you hadn't talked to me if you weren't sure your info was up-to-date? Then she calls me again today to re-ask me the name of my PCP (which had, indeed, changed since September,) and when I verified the name of my new one she said "Okay, I just wanted to make sure I had added that information to the right patient!" Ooookayyy..... 

Then when my husband and I walk into the place the lady at the desk--we'll call her Anne-- immediately shows me how to sign in to their computer system with the last four digits of my SSN, and says that's what I'll do from now on. Okay. I go sit down. A few minutes later another lady--the one I'd talked to on the phone I think, and we'll call her Betty--calls me over and is all confused because I'd signed in. I told her Anne had told me to and showed me how. Anne verifies this. Betty says "Anne's gone cuckoo. Forget about that for now." Anne says "Well, I could look at her and tell she had chemo so I figured she was ready for radiation!" Betty repeats "She's gone cuckoo."  Okay.

The meeting with the actual RO went fine, and I like her, but at the end she told me to check with them (Anne and Betty) to get set up for my planning appointment for either tomorrow or Monday. So we go out to the front and Anne tells us to just have a seat and they'll be right with us. Then she comes over and says that the techs will call me to set up the appointment, and the implication was that they'd call us this afternoon, which, they never did. Fine with me because I had absolutely no intentions of setting up that appointment for tomorrow anyway, but you'd think the RO would know how appointment setting is handled in her own office, and personally I'm of the opinion that Anne and Betty are both somewhat cuckoo.

We'll see how the planning appointment goes--assuming I actually hear from them tomorrow--but if the techs are as scatterbrained as the front office crew I *might* be going someplace else for radiation. I mean, yikes, ya know? They were all extremely NICE, but this is one of those things where you LIKE to feel like everyone in the place is reasonably knowledgeable about what they are doing. Or, maybe I am just spoiled by Dr. Rockstar's office, and I SINCERELY wish that I was going there for radiation instead, but unless the techs show themselves to be incompetent or something, I can't justify driving an hour each way to go to Dr. Rockstar's office vs. driving about 20 minutes to see what Anne and Betty are up to five days a week for six weeks. Sigh. So, as I said, we'll see how the planning phase goes. I'm not exactly brimming over with confidence at this point though, obviously.

Wonder if they will actually get 'round to calling me tomorrow to set up that appointment. If they do, I'm betting that they call at some ungodly hour of the morning (I am NOT an early riser) and I'll be too sleep-stupid to even manage to find a pen and make intelligent decisions about when to schedule the appointment. Oh well, at least then everyone involved in the conversation will be cuckoo.

I am, of course, still getting tired very easily (expected,) still having digestion issues but they're much better than they were. I got my Paxil but haven't started taking it yet; it just seems like a big step to me, but I might start it tomorrow. Maybe. Or, I  might not. I woke up depressed as crap this morning, stayed that way all day, but then tonight at some point it was like my black cloud lifted and for no apparent reason I started feeling better. Maybe when I'm done with all this being exhausted from treatment I need to go and apply for a job at that RO's front office because I'm obviously cuckoo enough to fit right in. :P

Pat: Hoping your pain is temporary! 

Wally: sorry about your daughter, but glad she wasn't seriously hurt. I'm sure she understands why you weren't there, but I know exactly how you feel. My 72 year old mom is going through some rough stuff right now and I feel all the time like I SHOULD be there for her, and I've felt that way through surgery and chemo....when I would have been just one more person for HER to have to worry about and take care of. It sucks when you can't be there for someone you love.

My mom did radiation a few years back (for DCIS that had recurred twice.) She told me that one of the techs told her that since she was leaving radiation to go to work each morning that she could combat the immediate effects a little bit by bringing a banana each day, and after radiation, to sit in the car and just eat the banana, and THEN go to work. Something about the potassium. Mom said it really helped her with not feeling so tired. Has anyone else heard of this? I won't be going to work after radiation, but I guess it will be worth a try anyway just to feel better for the drive home; if nothing else, I'll have taken a moment to eat a delicious banana. I wonder if a V-8 would do just as well. Hmm.

jab

Hi Ladies,

Wally - Congrats on your final chemo!!! Glad your doing better than last time, but sorry to hear about your daughter's accident.  I hope she recovers fast.

Amazon - Loved the pictures of the M and M's. I hope mine come up with candy inside! (I'm just starting to get flowers on my crocus now)

smrlvr - Take care of yourself. I too was pushing it, and whammo, two days in bed was my reward. It is so hard to losten to my body, when all it has been telling me is to SLEEP.

Pat - Your hair is looking great! And I love the picture of your dogs. Beautiful animals. I hope your feeling better soon.

BigT - Your mom must have been so scared with the mishap with her machine.  She's a pretty tough lady to go through that.

Lisa - Love the cat house - I'd love a few cats but the breed of dog I have is known for eating cats. - no kidding! - We have a neighbours cat that comes to our yard and he goes crazy. Who know that kind of hate could be genetic? Regarding sleep - I have managed to get a few good nights sleep and I feel so much better emotionally. It is a upward, or downward spiral for me, anyway. If I don't get sleep , I find it harder to get good sleep, and then get very cranky and weepy. If I get sleep, I get into a more 'normal' routine of sleep and sleep better, and feel better emotionally. I also can handle the pain levels better when I am well rested. Anyway, in the last week this whole thing seems to be tracking in the right direction for me, and given I'm about a week ahead of you with chemo, thought you might be interested in case your sleeping is not great.  

Bec - I'm going to use the chemobrain for an excuse for a while! (Based on reading I've done, it can go on for a long time...) Regradless, it is a great excuse for being 'dah', and really, we gotta get some positives out of this, right?

Inks - Beautiful daughter! What a cute outfit too!!

It's been a crazy few days. The stress of scans and biopsies cannot be understated, in my humble opinion. Anyway, I did get the biopsy results back and it was negative so, as it stands, I do not need any nodes checked when they remove my other breast next week, which is great. I am starting to learn, albeit very slowly, that you cannot live in the future with breast cancer recovery. The more I plan, the more I don't meet my own expectations, which is disappointing, or I get 'behind' on what I had planned and over do it and end up in bed. My new mantra is 'do what you can' (not what you plan...).

I hope all are having a good day. It's been raining here for 3 days. Hopefully some sunny weather soon....

JAB 

QuirkyGirl

Smrlvr - I'm having the same symptoms!  They hit with a bang today and I've been wondering what the deal was.  Didn't think my daily walk took THAT much out of me. Where are you in radiation?  I'm day 26 of 30.  Hope you feel better soon.  

Bec65

Pat, my hair looks like yours.  The hair on the top of my head is all growing in the direction of the middle -- it reminds me of the pics the hospital took of my kids the day they were born with their hair all swooped up on the top of their head.  Maybe my new hair will have more body than the old stuff?  

Amazon, my RO said to use Miaderm and Aquaphor throughout treatment and for one month after.  When things started getting really red and itchy, she said to try 100% aloe or Benedryl gel.  The skin under my arm got pretty yucky/weepy before it healed, but my chest skin only peeled.  I'm 3 weeks PFR and it's almost all better.

Wallymama, hugs to you and your daughter!  I'm glad she wasn't more seriously hurt.  

Lisa, did you get your appointment?  Are you going to stick with that office?

jab, YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So, 3 weeks PFR, 11 weeks PFC and I'm still so tired and achy.  I'm waking up during the night again like I used to.  I get back to sleep, but it's making me not feel as rested in the morning.  Also, my leg muscles and joints are stiff and ache, ache, ache.  Does tamoxifen cause this?  I have an appointment with my MO next week, and that is on my complaint list.  If this is how things are going to be from now on, I need to know that now and start getting my head around it.  I'm grateful that my walk got rained out this morning.

Here's a shout out to everyone we haven't heard from in awhile....I hope you are doing well!   

Amazonwarrior

Today I finished 4/25 rads and I feel like I am climbing yet another mountain. I feel that I'm not over the fatigue and pain from my previous climbs and here I go again. Strangely, I feel a bit of neuropathy developing after 4 weeks PFC in the fingertips on my right hand.

Even after only a few RT's my skin is slowly starting to turn red and feels itchy and tight. I developed a couple of sore spots that seem to be in deeper tissue as well as cording in the right axilla is coming back.:(  I keep using Calendula cream and emu oil. Will see if that does the trick.

Rads feel like a job to me, so I can't imagine having to do this and go to my regular job on top of that. Hats off to those who are doing both at the same time.

My hubby's back is feeling better, but my son has developed some rash on his cheeks and we suspect him to have the fifth disease.  

I had an ultrasound of the abdomen this week due to continued discomfort with digestion. I will be seeing my RO next Monday regarding the results and my RT review. 

Technically, I could look up the results online on My chart, but I am a bit of chicken  about it, as I may not interpret it correctly and may end up worrying more. Now I have to wait for the results which in itself is no fun. 

All: Thanks for your feedback about the creams. It seems that there is no consensus about them among the DR's. 

jab: I am happy to hear that the biopsy results came back negative! 

Wally: How is your daughter doing? 

How are you? It must be so frustrating not being able to be there for your 'baby'.

Bigt: How is your mom doing? I believe the company to be responsible for the machine's malfunctioning. They should have been checking it regularly.

Smrlvr/ quirky: I really hear you about the fatigue while on rads. We all need more rest to make us feel better. 

Inks: Are the antibiotics helping you to feel better? Do you find the curcumin and emu oil helpful? I read also that L- glutamin reduces radiation induced  morbidity. Has your RO mentioned anything about that?

Lisa: Anne and Betty sound nutty or at least quite disorganized!  Did you get a call back? Are you going to stick to this place or go elsewhere?

Pat: The muscle pain has not left me since my last chemo. My thighs and ankles especially still feel like I just ran a half a marathon. Just a thought: Could yours be related to the HT you are on?

Pam: I think we are all going to turn a little 'crispy' during our radiation. It makes me think that we are like some meat on the grill slowly turning from

 rare to medium to well done.

Pat/bec: I have 'officially' entered the concentration camp survivor look as far as my scalp hair is concerned. It was even noted by my DH. LOL 

lisa137

I did get a call back from the RO's office yesterday morning -- as predicted, about 15 minutes after I'd just woken up so I was still sleep-stupid, and barely remember the conversation, but I wound up going in for my simulation this morning at 10. 

I didn't have to deal with Anne or Betty at all, and the techs and RO all seemed to know what they were doing and handled the simulation very efficiently, so I reckon  I'll stick with them.

The RO said something to the effect that the type of radiation she wants to do on me is not the standard and she's got to prove to the insurance company that the non-standard way she wants to proceed is justified (I guess it's more expensive) so it will probably be late next week at least before I hear from them about the next appointment. I didn't ask her what the heck she was talking about or what the benefits of one method over another were -- or much of anything else -- because they'd made me so comfortable in that mold and it was a little after 10 in the morning and I was too drowsy to care. I really don't do mornings and she used a couple of big words that I vaguely thought "I'll Google that" and then promptly forgot. Way to be an advocate for my own care, huh? 

I'm finally starting to feel a little better--noticeable difference between yesterday and today. Definitely better in the digestion department, although that may change again tomorrow, but I scarfed down a cheeseburger and some fries today and then took a nap with no issues. My achy crampy thighs are much much better -- I credit the fluid pills for that. My toes are still numb but after I realized the other night that I couldn't even BEND my right big toe on command--it was essentially paralyzed-- I started working at *trying* really hard to bend it on command and now I can--, so I guess that's progress. I gotta say though, today was only the second time I'd driven since my surgery in October (!!) and driving is really interesting when you can't exactly feel the gas pedal or brake pedal....  When the RO asked me the other day how I was doing post-chemo I mentioned my numb toes and said "I'm hoping that goes away eventually," and she commented "With most people it usually does resolve, but in some cases it can be chronic." I wonder if they teach them that in med school, to use the word "chronic" when they mean "permanent" because it sounds cheerier somehow. Hah. 

Bec, I don't know about the side effects of Tamoxifen (though I suspect I'll be finding out real soon,) but there is a whole huge thread about it called "Bottle o' Tamoxifen." You could probably find out there. My mom was on it for 5 years though, and I think that for her some side effects would show up for a little while and then disappear after a bit.

Amazon, I'm with you; I don't know how anyone's doing ANY of this and working, and/or dealing with small children. I just plain don't think I'd be capable, not physically, and certainly not mentally. I've managed to do a little bit of my design "work" here and there, and where housework is concerned I've pretty much concerned myself with keeping the kitchen clean and doing laundry and been letting my husband either deal with the rest, or not, as he chooses. I figure I'll get it all caught up one day. Or not. Doesn't matter; the dogs and husband tear it all apart again anyway. I might at least dust this weekend. Maybe.

QuirkyGirl

Despite radiation fatigue and pain, I went to the symphony with friends last night.  It was great to get out and really enjoy myself.  Having lunch today with my former fiancé.  He hasn't seen me since diagnosis.  Going to be interesting.  Hope you all are feeling better today.  Recovery can be slow but we are walking slowly in the right direction!

lisa137

"Walking slowly in the right direction" is the perfect way to put it. I like that.