Illinois ladies facing bc

Welcome Karen ---- the doors here are always open and there is always room for someone else.  Hate that it is that way, but everyone here wants nothing more than to help you on this trip you never wanted to take. 

There is a lot of knowledgeable women here who will help you find answers if they don't have them already there for you.  Everything tends to be upsetting in the beginning, but there is a great deal of strength in numbers...and no one here is willing to let you walk thru this journey alone.  This is a journey with plenty of emotions, so whatever you are feeling, upset, confused, angry, sad.....this is a great place to let it all go.  We all have many times over. 

Wishin.....this sure sounds like the start of something good......maybe a curly-headed blond....well, maybe not quite that light......my hair came in just like it always was.....thin, fine, straight as a string and mousy brown.....however, it took two or three weeks for the pigment to penetrate to the tips of my hair or something because I was as gray as it was possible to be at first.  Whew....if I had to "get" my "normal" hair back right away....at least the color came back too.

I'll see you all in the morning.  It's 9:30 and I am tired enough to lose all semblance of reason any time now.  See you.

Hugs, Jackie

You don't have the power to make life "fair," 
but you do have the power to make life joyful.
- Jonathan Lockwood Huie

Just wanted to welcome all our new friends to the group!  I joined this IL group after moving here in August.  What a great group of gals to hang with!!!  Glad you found us!

Ladies,

I would like to ask you all something. I am currently working on a documentary related specifically to the emotional journey a woman goes through when they have had a mastectomy.  The videographer teaches at Northern and is wonderful.  He has produced and directed award winning documentaries.  I am working on this with another woman and dear friend who also had a mastectomy.

We are looking for women who would be willing to be on camera and share the emotional journey including all the raw stuff.  We feel there is a huge gap and need related to the EMOTIONAL journey we who have mastectomies undergo.  We are hoping to shoot again in June or July.  We have already filmed three women. 

Women who are totally through the journey and doing well emotionally, women in the beginning or end etc.  Also women who chose not to have reconstruction. 

And we would like this to be a documentary that has a diverse population.  So young, older, Hispanic, Asian, African American etc. 

Please PM me if you would be willing to be a part of this project.  We hope to be able to have women see this before and after their surgeries so they know what to expect.  Because we all know there are VERY few physicians that go into this.  We also see it as a tool to educate those in the health professions. 

I hope some  of you will want to be a part of this effort.

Thanks

I read this thread daily but have not been able to contribute much.  I am getting closer to a surgical plan but don't have anything set yet.  I have spent the last few days wallowing in self-pity and doubt.  In short; I'm a mess.  I used to be a calm, confident, intellectual, professional woman but yet I've been reduced to an indecisive, self-absorbed, blubbering mess.  I feel victimized by my own body.  My DH and Lago have taken the full brunt of my emotions.  I bless and thank them both for their patience and understanding.  I am such a private person but this thing called cancer has turned my entire world upside down.  Geez, they're just breasts.  I need to buck up. 

Karen - The first time I tried on wigs was a tearful event as well. I think my friend who came with me had an even harder time because she was trying so hard to hold it together for my sake. I did much better on my subsequent visits, my son even accompanied me to my final one.



Mary - I did most of my surgeries at Northwest Comm. I did my chemo in the Arl. Hts and EGV offices of my onc group (NWC and Alexian Bros. staff).



Hopeful Healing - I'm almost 7 years out and in the Stick a Fork In Me, I'm Done! stage. I had a uni Mx, then a prophy 6 yrs later. I'll PM you and see if I can be of any help with the documentary.



Joan - Glad to hear you are doing so well.



Invisible - I'm so sorry. I think we have discussed before about how many of us had our personal sobbing spaces. Mine was in the master bathroom, on the floor, by the tub. I'd just close the door and have my breakdown. Those were some really difficult dark times, which I know you are having now. Hopefully, sharing and venting here to those of us who can empathize will offer some comfort to you.

Perfect quotation choices, Jackie. 

Today is one week from my surgery.  I have an appointment with the surgeon and hopefully my pathology report will be back and news will be good.  He said the sentinal nodes removed were negative but until that path report is back from the removed tissue, I'm still thinking about it.  I guess we will all think about recurrance all of our lives, having gone through this whole experience.  What gets me is that I felt the best I have felt in 20 years right before this diagnosis and yet now, I can't get affordable life insurance or even disability insurance because of one diagnosis of breast cancer. Cancer is looked at as all one disease....it doesn't matter that I was proactive and had my mammogram and early diagnosis.  According to the insurance company that I was dealing with for disability insurance (additional like Aflec), I now have to wait 8 years before being able to qualify for any further insurance.  I wasn't even expecting them to qualify this event or further cancer events.  They downright turned me down.

 My arm is getting stronger.  I've been doing the exercises shown to me in the hospital and my right side arm (mastectomy side) has increased motion.  I don't even notice pain on the lumpectomy side and the exercises are a little silly for that side.  I'm still limited on the mastectomy side in lifting my arm to the side.  I can slowly go a little past shoulder level but then feel pain so I stop.   When did you all notice full range of motion on your mastectomy side?  Did any of you work with an occupational therapist to help return to your pre-surgery strength?  I am fairly active and was doing some fairly intensive exercises before this and I'm eager to get back to my schedule.  I was 20 lbs away from my goal weight before surgery and have lost 45 lbs over the last 4 years.  I still want to reach my goal weight and get in better shape to help prevent further disease from getting a foothold.

Hope you all are doing great!  My prayers for those of you facing surgery, chemo, or radiation treatments!  

Thanks Deborah,  Yes I have an expander on the right side.  I'm like you....just keep pushing a little more each day and I'm religious on the stretching 3-5 times per day.  I want to get back to my regular exercise schedule but some of the exercises are probably going to be excluded.  I am going to start doing some of it with my legs and core....and limit arm movements.  I just can't stand the thought of losing ground when I've come so far.  Four years ago I couldn't walk up stairs without losing my breath.  Before surgery, I was doing circuit training 4X weekly using the Jillian Michaels website and feeling stronger and healthier that I did at 40 (I'm now 50).  

 I'm sleeping fairly soundly and a lot more than I was before the surgery.  It amazes me that I can take a deep nap in the afternoon and then sleep another 6-7 hours at night soundly.  My body must need it and I'm trying to give it what it needs.  I have to sleep on a pile of pillows on my back and I don't think I move at night....just pass out...because I wake up in the same position the next morning.  I usually sleep on my right side and miss cuddling with my hubby.  He is afraid to get tangled in the drain tubes right now. 

Good luck with the tamoxifen.  I haven't found out what my further treatment will be.  The surgeon had me delay the appointment with the oncologist until after my surgery and it is scheduled for April 30.  I see the surgeon today and I'm hoping the pathology report is back and we can start planning what is next.  

DeborahC: I've had no problem with Tamoxifen! Maybe you won't either! Joan: glad you have turned a corner. Wig issues: I took my friend the first visit and my daughters (teens) when they buzzed my head and it helped.

I have been feeling good since radiation is over! Had my one month follow-up with RO and he said I don't have to go back for 6 months. I've been done with Taxotere since end of October, and the rest of chemo in January, (which didn't cause hair loss) and have hair now hat everyone says is "cute" and has been trimmed twice for shaping and removing fuzzies. That's great, but I still want it longer! I have reached a stage, though, where cancer isn't foremost in my mind anymore. I have to try not to miss every 3 week infusions of Herceptin! Unlike Valerie and lago I'm not in the best shape, but walked twice on the weekend. Have been doing house things/decorating/laundry. Need to try to make walking a priority in my life. That's my goal.

Invisible... You describe a pretty familiar scenario for most of us. BC really does turn your life upside down. Makes you angry, depressed, scared, etc. Like Rene, my master bathroom hosted my early melt-downs. Then, WTH, the couch worked fine. I was keeping the Kleenex company in business! Then I also felt so guilty because I have a very supportive DH and family, a nice home, good insurance, good doctors, blah, blah, blah. And that's not enough? Apparently not, I wanted my old life back ASAP. I too was in the best physical shape of my life and feeling very confident and strong. Any way, it may seem like a long road ahead right now, but you will come out the other side. Jackie's quotes today are right on target. Let me know if I can help.



Just left my PS office where I was able to drop off one more drain. Only one to go, but I bet I am stuck with that one for at least a couple more weeks. So now, I need to figure out what I can wear to my DH's company retirement dinner tomorrow night. Hiding one drain should be easier but It will be something loose and flowing... Probably a nice scarf. Kids are flying in tomorrow for the festivities. My DIL is a real fashion bug. I hope she can give me advice.



It's pretty brisk, breezy and chilly downtown today. But I always like to get in a big walk back to the water taxi station and do a bit of shopping on the way. So glad that my DH stayed home today so I can SHOP.

He did do a great job, which may be why you like to play with them so much!  (c:  I need a haircut bad, but I told DD that I would try to grow it out a bit so she could give me a hair cut!  I don't know if I will be able to stand it.  (c:  My breakdown was on the back of a motorcycle.  I realized my youth and life as I knew it were gone.  Phssssssst.  True, but life is good!  Strength and peace.

Adey I wasn't talking about my boobie prizes. I don't play with them. I  have to remind myself to do the daily massage. Its another "new thing" to add to my schedule.  BTW I think I look younger standing next to you. People just think I'm just as young as you. Oh wait we are almost the same age. Guess we both look good

Joan we want a shop and tell when you get back.

He's always been more of a butt man but  maybe that's because I didn't really have much boobage before. Seriously the way I have to "massage" is more of an agressive displacement. I don't see him being into that.

Rene - I'm also out of Northwest Community with my Breast Surgeon and Medical Oncologist in the Busse Center. Now Lymphadema specialist unfortunately as well.



Hopeful - I can try to be some help on your documentary emotional side from my Bilateral Masectomy, although I may be better with words right now since im only 4 months out.



I feel too vulnerable this early in the game to get in front of a camera. I got choked up just reading your post. It's a great idea especially showing the medical community the side they never know about.



I have 3 Dr. Appts this week and one PT. I find it Intersting that not one of these medical offices have hours beyond the 9 to 4. What happened to a Sat morning or once a week till 5 or 6 pm. Patients are people too with lives and work full time demanding jobs. Impossible to work and meet thei hours!