Alice, Hanoria and Sue

Hanoria, You are in my prayers everyday and you must be some sort of strong to be given these burdens to bare. Well, I hope things turn out weel with Bd. of Educ. We had to go through something with our son in the eigth grade as well. He had been on school property when his cousin vandilized the school and even though Adam didn't participate, he didn't stop it either. It was at the end of the school year and they expelled him for the summer and then in the fall he had to go to six weeks of Alternative school. I don't know if they have that where you are, but it is very strict and hard for my son. He was entering high school and we had moved over the summer and so instead of meeting new friends at his new school, he was dealing with A school, but brought his grades up because it was more one on one and they were not aloud to cut up in class.

No matter what happens with your son, I'm sure that in the end it will be okay.

Jackie

Hi,

I just wrote a l-o-n-g post, and it disappeared. (sigh)

I'll try again -- just a quick hi to say that life is better. My son is home, and so far so good on the meds. I can't even imagine what his "normal" has been -- cycling high into mania, then cycling low into depression. This is the only life he's known. He never knew that other people didn't live like this. This was the only life he knew, and he didn't understand why others were upset with his actions -- he thought he was acting normally. Poor guy didn't have a chance. He'd get too hyper and the doc would increase his ADHD meds. Unfortunately, these meds made the cycling even worse. Poor guy didn't have a chance.

But, he's home, and now we deal with the rest of it. Police, court, juvenile probation officer, Bd of Education, school, state lawyers, etc, etc , etc. But he's home, and actively wants to do what he can to help himself and the situation. Major difference. Thank you to his current meds!

Finally saw the med onc. The rad onc and surgeon both wanted a mammo about 3 mo after surg/mammosite was finished. The med onc wants a breast MRI in November-December. He said that because I had DCIS, right now all the radiologist can see is seroma, inflammation and scarring. So, I'll wait and get a picture later this year. The med onc said that because I'll have lots of radiation later (mammo, MRIs, whatever) there is no point in having one now that he knows won't have valid results. Interesting view. It amazes me how much difference there is in how the different docs do things. Heck -- if they can't agree, how are we to know what to do?

The radiation exhaustion has backed down greatly. Now when I feel it starting I can force myself to get through it. I still get really tired, but it's not the bone-draining, overwhelming exhaustion it was. This is progress.

Before bc, I had 2 pt-time jobs (about 20 hrs/week for each). I've been back at one (the one that gives the BC/BS!), but have been inching into the other. I'll be completely back at the second one in June. I need to increase my income. Our saving is almost gone, and in the next 2 months we'll have to start using use our retirement funds. Hopefully I can decrease bills and increase my income -- that will hold off the big bad wolf a bit longer. I don't even want to think about the bills for 3.5 weeks in a psych hospsital; no clue what BC/BS pays, and what my portion will be.

You know, it's an irony of life when thinking about bc brings comfort. It means that the rest of life has simmered down enough that I can pick up where I left off. (lol)

The med onc also said that he did NOT think it was Femara that caused my joint issues. He said that if the AIs are going to affect the joints that it's many (all?) the joints -- it usually doesn't start one joint at a time. This was potentially good news. Will have to see ortho doc and get an opinion.

The world has no clue how lucky it is that there are women. We handle things as they come along. I've told my husband for years that the "Y" chromosone is defective in our species -- it can only think about "things" issues, not "people" issues. Men have the physical strength, but women have the logic and tenacity strength to pull it all together and shape lives.

We are women hear us roar.

Hanoria

P.S. On a positive note, I was going to grad school for years. I finished my Master Degree a couple weeks before the bc diagnosis. My official diploma came in the mail, and it was printed wrong. After everything else, I had to laugh. It fits into the scheme of life so well. (Guess it was typed by a "Y" chromosone, eh?)

ROAR!

Alice,

CONGRATS!! HORRAY!!!! YIPPEE!!!!!

And you don't even need to take tomix! You have won the brass ring! What a major relief it is to know that the mammo was good, and you still have options (meds) later, if they/you decide to go that route.

WOO HOO!

Hanoria

Hi All,
I have had alot to catch up on! Yeah Alice, I am so happy for you. Our lives have been changed forever and we will always fear the worst so YEAH!!!! We have to celebrate all good news! I have been getting ready for my son's wedding, it is this Saturday. The ceremony is outside and it looks like we will have beautiful weather. What a blessing! It sounds like everyone is doing well. I just had another 3 month check up at the onc and all seems to be ok. I am tolerating the tamoxifen pretty well, the hot flashes are bearable but the night sweats can be frustrating. I don't seem to be waking up as much though so I get a full nights sleep. I just wake up in the morning soaked! But, like I said before. It is a small price to pay!
Sue

Alice- Hooray!!! I'm sooo glad that you have good results and nothing more to worry about. No tamoxifen, yeah. I have been doing really well on the tamoxifen.

Sue- Good luck this weekend with the wedding. That is so exciting.

Kelly- I'm still taking Lunesta every night. I have tried to go without it and had the worst nights. I do have night sweats but don't wake up with them on Lunesta.

Hanoria- Are things going to get back to "normal" for you soon?

Wendy- Are you doing well since your last treatments?

Ginger- Just want to say hi.

I went back to the neuro yesterday and they took 11 more vials of blood. Some is going to Mayo clinic again. I had two good days last week. One more than the week before so yeah.

Jackie

I'm in the Ambien club too... though I don't take it often (even tho I'd LOVE to), because the next night I have horrible rebound -- meaning I can't sleep at all for 1-2 nights after I take it, even if it's only for one night. and who knows how bad it would be if I took it for an extended period of time. But oh I wish I could! I'm constantly waking from night sweats - bad ones -- and once I'm warm and awake, I'm often awake for 1-1/2 to 3 hours. Ugh.

I guess the best advice is to use Ambien or Lunesta to get through the hard times, and then (with a doc's help) wean yourself off of it later. It's worth it to really sleep well, I think! (Now to take my own advice.... hmmm...)

Anyone find anything milder but still effective that does NOT have a bad rebound effect???

I'm doing better, but still muscle achy and my skin is tender from the shingles... and I have tingly burning in some places from the nerve inflammation. It makes sleeping a challenge!

Wendy

Interesting to watch how all our new "normals" are developing. Our lives are forever changed, and we are all creating (by trial and error)a new standard for ourselves. Our "normals" will take a lot of tweaking, but that's the way life goes.

Jackie is sooooo correct about support and understanding. When the diagnosis of breast cancer first hits, people flock around to support and do what they can. Now that it's been several months, everyone seems to have gone by the wayside. People don't intend to leave us, it just isn't as urgent to them, and after all, if we look fine and are returning to pre-cancer activities, there is no visual "reminder" of it. That is why we're here. We understand, empathize, and support each other.

Alice: woo hoo on the new doc! Having someone you can relate to makes such a big difference.

Sue: today is your son's wedding. Chicago is sunny, blue sky, and will be 75 degrees. I hope your son has equally magnificent weather. Take lots of Kleenex, and celebrate his happiness.

Jackie: they took ELEVEN tubes of blood? Does the word anemia come to mind? Good grief. How often do they take this much?

Is Ambien a sleeping med? I went through menopause a couple years ago, so taking Femara now doesn't have a huge effect on me (night sweats, etc). I admit, though, that not getting sleep makes handling life a whole lot harder. No decent sleep equals a crummy next day!

I still have occasional breast pain -- maybe once or twice a week. It's like a dull knife (if there is such a thing), hits suddenly, and lasts a couple minutes. Then it's totally gone. I assume it's a nerve that's trying to regenerate, seroma being absorbed or somesuch. Anybody else have it?

My son is doing amazingly well on the bipolar meds. He still has a lot of pre-adoption issues he never delt with, but now that the ADHA and bipolar are controlled maybe he will have the chance. He has more introspection now, but that means he's more vulnerable, and is a bit more fragile. He's willing to let down his guard a bit and chance admitting that he wants to love and be loved. What an amazing step!

I've handled the police/probation officer, psychiatrist, hospital....... Now I have huge issues at school. What a legal mess. Next week are 2 big meetings, and I should find out if he has been expelled. I'm keeping him home to keep him out of the fray. There are 15 days left to school, and isn't it ironic that I'm psychic and can tell that he has a 15 day virus?

We are woman hear us roar!

Hanoria

You know, it's odd -- I don't have any breast pain at all at this point! I'm three-and-a-half weeks post-mammosite...

But I DO have leg and midsection muscle pain and skin tenderness from the shingles -- it's hard to bend and move on the right side. It will go away with time, I think, but it's not fun. So we all get it somewhere

Wendy

Dear Jackie,

Like you I get pains in my breast, just about every day, varries from discomfort to pain. It does not stop me from doing things, just that I'm aware of it. I don't hear that talked about much, so I'm relieved that I'm finding out other woman have experienced this post treatment.
Tamoxifen does have a lot of side effects, one of them causing changes in your uterus. They do reccomend an ultrasound if you are having any of those problems that you are experiencing when you've been on tamoxifen. I'm glad that you're right on top of it.
Hope you're feeling better.
Alice

Wendy --

I threw some anti-shingle medicine on this post. Did it help? I know that shingle pain can be really bad. You have my empathies!

Ladies, now that I know that pain in the surgical breast seems to be the norm, how about dryness? I hadn't put it together until I finally went to the doc for a bad cough, and she gently yelled at me. All the symptoms I had ignored are from being too dry.

She said it's a common se from the cancer, radiation and meds, but when the patients first hear about it that they are so focused on the actual cancer treatments that they ignore what sound like minor se.

Anyone else have sticky (or itchy/irritated) eyes, dry mouth, extra dry/cracked lips?

Hanoria

Hi everyone,
Happy Memorial Day,

Hanoria, I haven't had any dryness to speak of, but I've been learning that we all have different side effects. It's just nice to know that we're "not crazy" but really feel all these things that the doctors seem reluctant to speak of. I'm one who would like to hear about all the side effects, and then be glad when I only have a few of them!

I have recieved the packet from voicesofmammosite awhile back. I've just been so busy getting better and getting back to a normal life, that I've not had the time to look into it. I've been working hard at my fund raising for my Avon Breast Cancer Walk in October, that I just put it aside. After reading posts about it, I went on to the site again...Kelly...your a star!!! I love your picture and your letter. It has spurred me on to look into it further. I would have loved to have been able to get onto that website when I was considering mammosite radiation, it would have helped me greatly. I want to help other woman in the future who are faced with what we all have been faced with. Without this website, I don't know how I would have gotten through this as well as I have. You all have been a life saver for me. We don't know our faces, but we know our stories, and it helps, it helps a lot. I would like to be a help to someone else, so I am going to work on the packet.
Well by for now, hope everyone had a great holiday,
Alice

Hanoria- My goodness, how awful for you. I'm sorry you are having problems with your foot. Surgery doesn't sound fun nor does having to be on a walker for many weeks. Here's sending you hugs!

Alice- Tell me again how to get to your webpage for the Avon Walk. I glanced through the previous posts, but didn't find it. I would like to send a small donation. Wish it could be more, but tooo many doctor visits lately.

Kelly- From reading your posts on other forums, sounds like you've been really busy and a little down. Am I reading it wrong? Hope you are in better spirits and all has calmed down with the end of school. Are your rentals all taken care of? I have cleaned rentals for extra money before and it is not an easy or fun job.

Well, still waiting to hear from nuero. Called his office yesterday and just got voicemail. Hope I hear something soon. Had three good days over weekend. Ended on Monday and was bad yesterday, feel a little better today. Got a little scared yeasterday because my chest got real tight and felt like I couldn't get a deep breath. Maybe it's because of the air quality around here latley. It is hazy today from the wildfires that are burning in Georgia. You can walk outside and smell it. I think it is so strange that we are having smoke from at least four or five hours away from here.

Wendy- I was reading in the Sunday paper that they have a new shot for people that have had chicken pox to prevent shingles. My Aunt said she just got it. Too bad they didn't give it to you. How are you doing?

Well, gotta go, I'm washing sheets today and they are done so better get them back on the beds.

Jackie

Kelly- Thanks for the good thoughts. I do try to look at things with a positive twist however it seems that as soon as I get on the computer, I feel the need to vent. It may be because I don't have a voice. My daughter says that when I get my voice back (on those few rare good days) that I just chatter all the time.

Got my results from neuro today and all bloodwork came back normal again. Good and bad. He wants me to make appt. with GP immediately to make sure it isn't heart related. Hadn't thought of that since this is a usual feeling I get on very down days. Now I keep worrying that maybe radiation did have effect on heart. I know, chill out until I have something to really worry about.

Well, y'all have a good week,
Jackie