Starting chemo Sept 05

tinkermax

Hi ladies 

sorry to be absent for so long..

Im ok, i had my expanders out, silicon in..but.the new editions are not what i expected.

They are very flat and low..nothing perky at all.  I am in the process of trying to get an appointment with the surgeon, to maybe get them replaced..

apart from that, my hands are still getting worse..no diagnosis as such, but on a brighter note, im still cancer free......so that is great

thanks for thinking of me, and thanks for the PM sandra, i will go read it now.I need to read back thru the posts here, to see how everyone is doing, will check back in soon.

gentle hugs to each of you

maxine 

Calico

Sandra,

prayers for your son and all our men and women in uniform to make it back safely!!

Maxine,

so nice to hear from you. Sorry that your hands are not getting  better, and no idea why, right?

My implants are flat too, sort of like burger buns. Maybe the round version would have been better, who knows.

I am going to see onc this week. Dexa shows more loss and suggests biphosphonates, so lets see where that leads. PET I don't know yet....I am my usual scared self, feel like I am on death row.....grrrrr.....hate scans.....

Three years ago we were all hanging with ports and such, look how far we came!!!

Hope the rest is checking in again....it's Halloween month....I love it and fall too!

txred9876

I HAVE BEEN BUSY TRAINING!!! I am walking about 2.5 miles 5-6 times a week (and I have gained 5 pounds!). I have been walking for the last 4 weeks and last weekend I was part of a team of around 50 for the Susan G Komen Walk for the Cure in Houston! We were bringing to light Inflammatory Breast Cancer. The team included most of the staff from the Mogan Welch IBC clinic at MD Anderson. Up to and including Dr. C (I dont know how to spell his name).
I made the entire 5K!!!!! I am planning on doing the walk here in Austin as well on the first sunday in nov.
I was the only IBC survivor out of our group. There was planned to be a couple others but they were unable due to illness to attend. I took a little longer then some and there was a very large group cheering me through the survivor path to the finish line. It was a very emotional day for many of us. My husband walked with me (but in the crowd he got ahead of me...I am sure in a past life he was a speed walker..>LOL) and he was at the finish line with a big warm welcome hug and kiss. There were not many dry eyes in our group.
During my walk I thought of all of you and our battles. I thought of our triumphs and our warriors who have gone before us. I had a hard time keeping a dry eye most of the day.
Tina

 PS update on hubby's business - he is busier then ever and the "economic slowdown" has not hit his business much (he taylors to the people who don't need loans....wouldn't that be NICE!). My oldest daughter,Naomi, who turned 18 last month started community college in southern oregon on Sept 29th and she started working full time in a assisted living place in mid sept. She loves both and is doing great (the bf I don't like is still around for the time being). After over a year of very little communication (due to my ex husbands antics) I am finally having some communication with Pam, my youngest child who just turned 16 last month.

txred9876

I have to say something about scans and illness.......

When I was at the walk my husband and I were talking to different parts of the group and after my husband said several of the doctors kept looking and referring to me like I was just on borrowed time. They feel it is more likely then not I will eventually end up a patient at their specialty clinic for IBC.  They did not tell me this or act that way toward me but if the doctors feel this, should I?

 My opinion, since 80% reoccur within 5 years of getting IBC, should I not feel like I am just waiting for my doom. I am not going to wait. I am going to value each and every day I am given on this earth, but if my maker (does not matter which religion ) has other plans for me I am ok with that because I have been able to say things I may not have otherwise said, done things I might not have done and been loved by some wonderful people. I am right with my maker and that is all I need to worry about the rest will be taken care of.

Seek whatever you must spitiually, medically or psycologically to be ok with your scans and your future, no matter what that may be.

 Just my two cents .... for what its worth

tina

Liezel

Tina,

You brought tears to my eyes this morning with your post...  Thank you, I needed that today.  I am going through a difficult time at the moment.  Connor has been diagnosed with Asperger Syndrome, dh in London, getting ready for a new job, scans coming up, and appointment with cardiologist for feared heart problems.  So thank you for that....  You really are the perfect example of your own philosophy.  I know it is difficult to deal with docs and their stats, my onc feels I am on borrowed time, but considering we are more than halfway to 5 yrs I think we are doing pretty good and on our way to prove their stats wrong....  

I am so happy you are communicating with Pam again.  Hang in there and just enjoy who and where you are.....  Because you are amazing!

txred9876

Liezel,

You (as all of my sept sisters and their families are) constantly in my prayers. You and Conner will get some extra ones from me! I think sometimes its harder to deal with our children being ill then our own illness. I was not intending to make anyone cry but I do find myself crying more these days and letting the emotions flow out (a total release), once they are out then I can get on with what I need to do.

Love and Hugs,

Tina

 PS. For those of you interested in a small bit of who and what I am about please go to the bottom of this link and click on Tina's story. The river is a local christian radio station.

http://www.theriver1023.com/cc-common/mainheadlines3.html?feed=283926&article=4326733

lynellb123

Hello to all my September sisters! I am back in school and working with children with learning disabilities. It is challenging and exhausting but I love it! I am excited about my 3 year anniversary and fondly remember how all of my September sisters helped me throgh the difficult time of the entire breast cancer experience. I wish everyone well and want you to know that you will have a special place in my heart ALWAYS! Hugs to all...

txred9876

bump up

Pegk

Greetings September Sisters!

I haven't been on in a while but I want to let you know that everything is good with me! I did the Avon Walk last weekend in NYC and, as before, I walked 26 miles on Saturday and 13 miles on Sunday. This year there were 4,600 walkers including over 400 survivors. You were all with me, your names on ribbons close to my heart.

Some of you are on Facebook and have seen my photos. If not, here is a link.... 

First Day 

http://www.new.facebook.com/album.php?aid=43547&l=4e13d&id=578243296 

Second Day: 

http://www.new.facebook.com/album.php?aid=43554&l=04644&id=578243296 

Susan, thanks for stopping by to keep our thread active. How is your daughter doing? Both of our daughters left for college as we were beginning our treatments and now they are seniors! Mine is currently interning at the Conan O'Brien show.

Calico, I'm sorry to hear about your mother and I hope your daughter will continue to get stronger.

Leizel, I'm so sorry to hear about your son's diagnosis. I know it's difficult, but maybe now you will be able to treat it.

How exciting that you may be travelling. Please let me know if you're ever in NY!

Be strong everyone!

Peggy 

sholroyd

Yout two cents were well received here in the UK Tina - thanks.

 Liezel, you and your family are in the thoughts - I am sorry to read about your latest kick in the tum.

Maxine - great to hear from you but sorry to read things aren't so rosy with the hands and the implants - but as you say CANCER FREE!

Peg - as always in awe of your energy - inspiring.

I am catching up on posts - all OK here in the UK just very very busy, but this is keeping my mind off my son away from home.

I am just off to pm Susan - I believe it is her birthday?

Speak soon.

Sandra from the UK

txred9876

Peg you amaze me!!!! I need to drop at least 150 pounds to attemp the avon walk!!!

I have been walking my very small 2.5 miles a day (or at least weekdays after work). Now that I have been doing it my dogs won't let me sit down without a walk...LOL

Maybe we will eventually get up to doing it twice!!!

tina

Calico

Tina,

you've come a long way!!! glad pieces are coming together....good for you walking, it's all muscle pounds you gained!!

Lynell,

nice to hear you love your job, kids need people like you

Pegk,

you never cease to amaze me Do you have another mammo next month?

I am going to check your pictures!

Sandra,

prayers for your son. It must be so hard.

Susan,

Happy Birthday (nice of you to kick our butts to check in more often   )

My DD is doing pretty well, still little limpy, went for her first 3 mile (careful) hike in the woods, sore muscles and hungry lol. No sports ever though, it is sad.

I had my PET, it showed the bone thingy again and they called it an enchondroma. Don't even want to tell you that I read they can go malignant, but it's rare.....since my family is so lucky receiving bad news, I couldn't imagine getting lucky with something else, that's bad...how are my chances lol....just kidding.....

Halloween is around the corner....are you all decorated up to your ears? We are starting tomorrow. I love it.....scary.....

Stay warm, hope to see 'everybody' check in....including MIA Susan

susan_02143

Hi All.....

Thank you for your birthday wishes. It was a quiet day, with a festive dinner with my husband and kid [who is home on break.]

I can't believe that I have hit the big 5-0. I mean, I was a kid just yesterday!

Few updates: my sister completed her treatment but is still not able to eat by mouth. Her tongue is so covered with sores that almost all foods are too painful to manage. Last week was a bit better, but this week is worst. Her scans have been delayed since they are worried that the sore would be misread.

And my poor Dad is still in the nursing home. My mother is back home, but hasn't brought him home yet. I heard today that she is planning to let him come home on November 1. It will be a hard adjustment for my Mom who is not particularly patient. Since she still works 60 hours a week, this leaves him with a lot of time to kill all by himself. It will be up to them to figure this all out.

Good to hear from everyone! *susan* 

Calico

Wow Susan, big 5-0 ....that is even more special (you are still a spring chicken   )

glad to see you back in here. I am delighted to hear that your sister completed her treatment and your dad is better to.

I sure pray that it is up the hill from here on. About time that you also get a break from taking care of everything. I am happy for you!!!

txred9876

Here is a copy of the article they are running .......I just wanted to share...

tina

Tina Qualls Interview

The Connection

Oct. 27, 2008

  

  

Breast Cancer Survivor Channels Experience into New Public Educator Role

When Tina Qualls found the sore, reddened patch on her chest in July, 2005, she hardly batted an eye. Sunburn at the volcanic peak of a long Texas summer; what could be more ordinary?

At it turned out, the most extraordinary experience of Tina's life was about to begin, starting with the news that her red spot was due to inflammatory breast cancer, not absence of sunscreen.

The stunning diagnosis meant she already was at Stage 3 of one of the rarest and deadliest forms of breast cancer. Though lacking health insurance, she would somehow have to pay for months of harsh and expensive chemotherapy that, in one doctor's prognosis, would give her only a 20 percent chance of survival.

Three years later, the HHSC network analyst and help-desk expert not only has survived but become one of Central Texas' most effective advocates for breast cancer awareness and research. Using her own story and growing skill as a communicator, she educates the public in person and through the news media, promoting the same combination of early diagnosis, family support and positive outlook she credits with saving her life.

With October's celebration of Breast Cancer Awareness Month coming to a close, The Connection took a few minutes to speak with Qualls about her experiences with breast cancer and how she's taking her message to the public.

*  *  *

The Connection:  Why is inflammatory breast cancer so deadly?

Tina Qualls:  Well, as I learned, it's not just an incredibly aggressive form of breast cancer but one that people know very little about. Because the first sign you see is right on the surface [of the skin], it's easy to assume it's just a rash or sunburn. There's not always a lump with this form of the disease, so many women figure, "Hey, there's gotta be a lump for it to be breast cancer, right?" It's natural to sort of ignore the "rash" because you assume it'll go away with time. Trouble is, when you see those first signs you're already at Stage 3.

Q:  How did you find out you had breast cancer, not just a sunburn or rash?

A:  I was on some pretty strong antibiotics for quite a while, but of course that had no effect. After that, other doctors checked me out, and one even came right out and said, "This couldn't possibly be inflammatory breast cancer."

Well, that was the first time I'd even heard the word cancer brought up, and it really got my attention. I started doing self examinations and, one weekend, I did find a deep lump in my breast. In hindsight, I'm really grateful for that. Otherwise, I doubt my case would've been taken seriously.

Q:  How did you deal with the expense of chemotherapy and other treatment?

A:  It wasn't easy. I had no health insurance at the start of my journey. I'd previously worked for the state, but I'd taken a couple years off and was working in real estate. And [because of a technicality] I couldn't qualify for a state-funded program that might have paid for my treatment.

Thankfully, I was able to get into the Shivers Cancer Program at Brackenridge Hospital in Austin. That wouldn't have been possible without help from the Susan G. Komen Breast Cancer Foundation and a lot of money I borrowed from friends and family.

It was actually a pretty interesting experience. My type of cancer was so rare that many doctors had only seen it in textbooks. So in a way, I was kind of a test case for some of the people who were treating me. They'd be, like, "Do you mind if these interns come in and take a look at you?"

Q:  So, what happened next?

A:  Well, basically a lot of chemotherapy. In a typical case, you might get four doses of the hardcore chemo every three weeks. But due to the severity and aggressiveness of my case, I was getting six doses every two weeks. All in all, I had 26 months of various kinds of chemo. It was just awful. I was utterly, completely fatigued all the time. And you can imagine the damage it does to your immune system. You're susceptible to any and every disease. The doctors and nurses have to mask up, glove up and apron up just to examine you.

Only lately have I started to feel completely human again. And because of neuropathy [caused by the chemo], I still have to take pain meds just to go walking.

Q:  It's obvious that walking has been a major symbol of not only your personal progress but also your public image as a survivor. When did you start including it in your recovery process?

A:  I started as early as I possibly could. This year will be my third time taking part in the Austin Susan G. Komen Family Walk [part of the Nov. 2 Race for the Cure event]. I also participated in the Houston Komen Walk on October 4. Plus, I walk 2-1/2 miles every day after work.

Q:  How do you keep yourself motivated?

A:  I'm making a serious effort to get into better shape, and walking also gives me a real sense of well-being. Plus, I have the advantage of four excellent walking buddies - my dogs. I've got have a Chihuahua, a Corgi, a St. Bernard and a Miniature Pinscher mix. We're a real rat pack when you see us going down the road!

They don't let me slack off even a little bit. If I come home and sit down at the computer rather than getting dressed to walk, the St. Bernard will nudge up against me and make me get up. That's a lot of force to resist, so I pretty much have to obey.

Q:  The walking seems to have worked, because you're looking very healthy now. And with all that canine motivation, it's easy to see how you're able to stick to it. But why did you feel the need to get out and walk long distances - in public events no less - while you were still in treatment?

A:  I felt it was imperative to share my story with as many people as possible, and those big, well-promoted events were a great opportunity to do that. Plus, I had a lot of support. My friends and family walked with me, and my boyfriend, Joe - who's now my husband - has been great all the way through. Everyone has, really.

Q:  How did your family handle it when you first got the diagnosis?

A:  They all responded in different ways. For example, Pam, one of my two daughters, wrote a fictional story based on what was happening to us. It was about a child whose parent was very sick and how she was able to deal with the situation. She's a great writer, so that's how she was able to work through her emotions. I love the story and am looking forward to that classic parent moment where you embarrass your kid years later by pulling out something they created in their teens and gush all over it!

Q:  You've obviously reached the point where you can find humor in what was once a very dark situation. Laughs must have been harder to come by a few years ago.

A:  Right. When I got the diagnosis, my first thought was, "What's going to happen to my daughters?" And of course I had the long boo-hoo night of crying and going "why me?" But you know, when I woke up in the morning I was in full fighting mode. I just decided this was not going to happen to me. My attitude was, I refuse to let anybody tell me what's going to happen to me.

And there's no doubt that, in my case, a powerful spiritual force was giving me strength to fight. Without that, I'm sure I couldn't have made it.

Q:  You've said that you felt compelled to personally get out and educate the public about breast cancer. Did this aggressive approach come naturally to you?

A:  Not really. I mean, I'd always been a person who was easy to get along with, but not necessarily one of those folks who could just walk right up to someone and start a conversation. Now, it's a whole different story. I'll chat up anybody who'll give me an ear.

.

Q:  Apart from face-to-face talks at events like the Komen walks and races, what have been some of the major promotional activities you've done?

A:  All sorts of things. I've worked with a public health educator to give programs in Caldwell, Hays and Bastrop counties. I made an appearance at the Women's Chamber of Commerce annual conference. I spent a day with a lady from M.D. Anderson Cancer Center, working a booth right next to the front door. And here in Austin, I've done sound bites for The River, an FM station that plays a lot of Christian pop music and programming. They've been really supportive; this month they're featuring the Month of a Million Mammograms pledge program on their website.

Q:  Sounds like you're verging on celebrity status.

A:  Kind of. I will say that appearing repeatedly within a network of people who are concerned with breast cancer awareness has led to my name coming up more and more frequently. I guess you could say I'm becoming a go-to person on the subject. And I have to add, as all of this has been happening, my boss, Cheridan Brown, has been very receptive and supportive.

Q:  What areas are left for major education and outreach efforts?

A:  One thing I consider extremely important is increasing awareness among men. My husband's support has been such a blessing to me, and the same can be true for other women who've been helped by their husbands, boyfriends, brothers and dads. So far, though, the guys haven't been heavily targeted for outreach. I think that's one area we need to be pursuing.

Awareness of symptoms is so important, especially for something like inflammatory breast cancer, which you don't really notice until it's at Stage 3. A guy who's informed about breast cancer is more likely to urge you to get a checkup and better able to support you through treatment. This is a fight where we need everyone to get involved.

*  *  *

Resources for Breast Cancer Awareness

• Susan G. Komen Breast Cancer Foundation
  
  
• Inflammatory Breast Cancer Foundation

• National Breast Cancer Awareness Month
  
  
• Breast and Cervical Cancer in Texas (DSHS)

tinkermax

Thanks for posting Tina....great article

 gentle hugs to all

maxine

txred9876

bump

Pegk

Tina , 

What a great article! What an inspiration you are! Keep walking and keep posting!

Calico,I hope you're walking with your daughter. Every step helps! 

A Very Belated Happy Birthday, Susan! 50! Another milestone to be proud of!

Great to see your smiling faces, Maxine and Lynell

All the best to everyone!

Peggy 

txred9876

The article went "live" on Monday and I have gotten emails from all over the state. I got one email from a lady whos mom is a 20 year survivor of IBC. What an inspriation.

Tina

Calico

Go Tina!!!!!

Good for you bringing attention to the "beast" and yes!!!!, definately a motivation to hear of a 20 yr survivor!!!

Just checking in to wish you all a Happy Halloween!!!!

I love it and dress up to "scare" the little ones coming to the door. We got a lot of compliments over the years for dressing up lol (considering we are grown ups!).

Best wishes for an uneventful autum!

txred9876

calico,

 you will have to post a picture. I am dressing up for work on Friday as Pippi Longstocking.

My long red hair and freckles fit the part!

Tina

susan_02143

_bump_

tinkermax

Bump

txred9876

I know its small but I added a pic of me and my boys!

tina

Pegk

Great to see you Tina! what are the names of your "boys"?

I'm glad we're all so busy, and I admit I haven't been checking in much lately, but hate it when I see our thread on a back page.

Be well, everybody!

Peggy 

Calico

Hi ladies,

I am having 'butt' pains, severe muscle I think down my leg, wonder if this could be from the fosamax? Had MRI and wait for the results (hoping they don't see anything wrong). Hate scans!!

I started on Lexapro two weeks ago, no change yet.

Hope all is well, we have beautiful weather.

Calico

Tina,

are those four???

sholroyd

Just "Hi all" - just caught up with you all.

Keep well and motivated.

Sandra from the UK xxxxxxxxxxxx

susan_02143

Good to see everyone checking in. I have "passed" yet another 3 month checkup with my oncologist. My sister has now gone 2 weeks without using her feeding tube. Her first post-treatment scans are next week, and assuming they are clean, she will have the PEG tube removed. My father is now back at home, and though the transition is difficult both of my parents, this is a very good thing.

Right now, we are at 16 for dinner on Thanksgiving. Need to finish patching and painting the dining room. We had insulation pumped into the walls, leaving nasty holes all over the walls. The difference is astonishing. My feet don't feel cold air pouring across them as I stand in front of the stove, and when the furnace does come on, it only stays on for a few moments. And, then it doesn't come on again for hours. Delightful!

So everything here in Boston is looking up! Best to all of you..... *susan*

susan_02143

Calico.... hang in there!

http://community.breastcancer.org/forum/8/topic/724218