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ABBYSHARPE's Photo ABBYSHARPE SparkPoints: (12,203)
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10/12/15 9:27 A

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I love Chemo Angels. So much so that I've been a card angel a few times when my treatment ended.



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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
9/14/15 6:48 P

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I am so glad that they sent you some cards. I am sorry I haven't been on in a while. You're welcome for telling you about them.

Hope you are doing well!

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
9/2/15 9:42 A

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Julie, I forgot to say two things.... Best of luck tomorrow with your chemo - you're in my prayers. The other thing is the Chemo Angels sent me a bunch of cards; over the last three days I've received 11 beautiful cards! I think of those cards as indirectly coming from you, since you're the one who told me about them. So thank you.

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
9/2/15 7:19 A

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Oh, I hope the meeting on the 10th with the surgeon goes well and that you're good and ready for the surgery.

I didn't look up too much either for the radiation side effects. What scared me the most are the side effects on the lungs and heart, but it turns out those are very rare side effects. So I'm probably going to do it. I see my radiation oncologist for the first time tomorrow.

Yes, my last AC chemo is the 9th - one week. I also didn't find the side effects too bad. The worst for me is the hair loss. Hopefully side effects don't show up later on, which is possible.

Yes, it's really neat that we're doing treatment together - the chemo and maybe the radiation too. I think of you as my treatment buddy.

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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
9/1/15 11:52 A

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Christina
I go the 10th to talk to the surgeon. My last chemo is Thursday. Radiation scares me I have tried not to look up too much online. I did really well with the chemo and didn't have too many of the side effects so I'm hoping to have the same response with Radiation.

I think it is neat that we are almost on the same schedule with chemo. The last one for you soon too right?

Shari
I have held out on shaving my head. My doctor mentions it everytime I see her, but I am not ready to shave it - so I won't!



Edited by: PRINCESS_JMH at: 9/1/2015 (11:53)
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8/27/15 2:43 P

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Julie, I never shaved my head either; and it's ok if you DON'T; all that matters is what you are comfortable with; please don't do it just because someone else, even a doctor, thinks you "should."


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
8/27/15 7:28 A

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Hi Julie. I don't go on Facebook, but thank you for your kind offer. :)

Six wigs?!!!! OMG! I only have two, and only wear one. One is mine, bought. The other is a rental, and that's the only one I like. It needs a cleaning right now too, and I'm soaking it as we speak. :)

Maybe one day they'll do chemo angels in Spain. Maybe they'll take me up on my offer.

Have they scheduled your surgery yet? Have you seen the possible side effects of radiation?

I'm really struggling right now with my mental health, but my mental health team is listening and will get more involved in my care. So I'm feeling a teensie bit hopeful right now that we can turn things around.

PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
8/24/15 10:15 P

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Just got the doc to fill out the papers for the financial stuff. So it will be interesting to see if I get any help. Thank God my boss has been working with me alot. The center sold shirts to help me financially too. Just waiting to see what happens with all of that.

How are you doing? Hopefully you are doing well.

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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
8/24/15 10:11 P

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I did not end up getting a halo. But I now have 6 wigs to chose from. 2 of them need cleaned. I'm sorry the chemo angels don't do anything in Spain. I thought they might because one of my chemo angels is from England.

Do you have a facebook? If so private message me and maybe we could be friends on there too!

I haven't lost a lot more hair. I'm surprised the doc didn't ask me again why I have haven't shaved it yet. I just can't bring myself to do it. I do seem more comfortable with my hair the way it is. But I will be happy when it grows back.

I am worried about radiation too. It is the next step after surgery. Not looking forward to either of those!

Edited by: PRINCESS_JMH at: 8/24/2015 (22:13)
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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
8/23/15 4:59 A

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Hi Julie, how are you coping with your hair loss? Did you get a halo? I love those!

I hadn't heard of Chemo Angels, so looked them up and signed up. They already responded to say they could send me a one-time support card, but they don't do Spain. I offered my support in case they need anything here in the future, like if they expand here. Thank you for telling me about them.

PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
8/13/15 8:35 A

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I have little bits of spiky hair right now. I don't recognize myself in the mirror but i do laugh at myself because it stands up everywhere!! I am still indecisive about shaving it. My doc tells me too. But I already can't look at myself and my husband has some issues with it too. I have been walking around the house without my scarf or hat or wig. But he just mentioned yesterday when going out I should try to stick with one or the other because when going from the wig to the scarf it makes it more obvious to those we don't want to know. NOSEY neighbor for example.
I am looking at getting a halo to wear with my hat and scarf so it will look similar to the wig! I am just glad that everything seems to be working!!

Have you all signed up for chemo angels? They are awesome. I have 2 angels that send me cards and good wishes everyweek. They are very encouraging and I love getting mail!! www.chemoangels.net Check it out if you haven't already!!

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
8/11/15 6:59 P

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Julie, I have a tip that might help. Since going bald, I've been wearing nothing on my head in my apt. It freaks me out to see myself bald. Then the last few days I've been wearing a bandanna inside, and I'm feeling a lot better. Maybe that's helpful for you too when the time comes?

Edited by: TIGERSEYEHEART at: 8/11/2015 (18:59)
TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
8/5/15 2:33 P

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Wow, so many changes in your treatment plan already? That would really be difficult for me, as I like things planned. My oncologist won't discuss my treatment beyond the AC chemotherapy, other than to say it will be a year of chemo, with Herceptin infusion and hormone pills, as well as radiotherapy. So I'm really in the dark here, which I don't like. But her thinking is what you're saying - that the plans often change and there's no sense discussing it this early in the game. Hopefully she will tell me at the next infusion.

I'm also having a heck of time dealing with my hair loss. To me it feels like all the other treatment - invasive and humiliating. A hair dresser shaved my hair with clippers before it fell out because most people told me to lose your hair in chunks is traumatic, and I think I would agree, though of course I'll never know. Once it started falling out it was so very, very painful, so I took a razor to my head and shaved it to the skin. That stopped the pain. I don't know if it's the same for others? My hair still hasn't fallen all out, and it's growing back in patches.

Edited by: TIGERSEYEHEART at: 8/5/2015 (14:35)
BECKYANNE1's Photo BECKYANNE1 SparkPoints: (256,188)
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8/4/15 7:05 A

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Welcome to the team Julie! As you are finding out, there is alot of support on this team!

Becky


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8/2/15 11:19 A

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Julie, I had one of those Good Wishes scarves too, they are very nice!

At the time I was losing my hair, I could not bring myself to shave it, and while I think it's great that some woman are proactive and just go ahead and shave it, I also think it's ok if you don't want too. I had mine cut short ahead of time, and when it started falling out in clumps, I just took the scissors to it myself and cut all about inch short. I was going to start wearing scarves anyway, so I wasn't worried about how my hair was going to look after I went at it with the scissors. I never did shave it, I let fall out naturally.

I have to admit, I did have a "pity party" and cried a lot for the first two days it starting coming out in clumps, then on the 3rd day, we had to take my mom (who was going through treatment for Non Hodgkins lymphoma at the time) to the ER when she developed a high fever and pneumonia. That pulled me out of feeling sorry for myself, and while it wasn't easy, I started to feel more accepting of my bald head.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
8/1/15 2:51 P

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Did you have a hard time with shaving your head? I got my cut short to prepare. Then when it starting thinning I got it cut again - it has stopped for the most part. I have been wearing a hat - not sure how I feel about the bald thing. Just curious what your thoughts were. My hair was fairly long too. I posted pics of my hair before and after the first cut. Just one of those things that is difficult for me.

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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
8/1/15 2:36 P

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Surprisingly I found a few website from the info given to me when I went to get my genetics testing done. I didn't realize that my state would not be of more help. I expected I would be able to get state assistance but I can't because my children are too old. They do offer food stamps - every little bit helps. But that definitely doesn't pay the bills. I have been working hard to find the info I need to apply for this assistance I found online - I just hope they can help.

I made the mistake of assuming that help was easily accessible.

My first chemo was on July 2 and my 2nd was on July 23rd. I get chemo every 3 weeks too. Carboplatin and taxotere with the neulasta shot the day after. So 2 down 2 to go. then it looks like I will have a lumpectomy and then Radiation or more chemo afterwards - depends on how much the chemo shrinks the lump etc. They have changed my treatment plan a few times between diagnosis and my actual first treatment so I don't know if this will change or not.

I have triple negative stage 1 with no Bracha. I am just learning a lot of this lingo so please bare with me as I am not sure what some things are.

The wig I got through the Women In God Strong site is a wig exchange so when I am done I will send them back to her.

There is also a website called breastcancerfreebies.com It has alot of great links on it.

Thanks for the support! I hope that I can help you in some way as well!

Julie

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
8/1/15 1:19 P

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Wow, Julie! You're a mover and a shaker. Unreal how fast you've pulled all this together. Congratulations! emoticon

I belong to a breast cancer association here. Their site is in Spanish, but in case you're able to speak Spanish or you can translate through Google Translate, here is who I belong to: asamma.org/

I got two pretied bandanas from them on loan, some scarves on loan, as well as a second-hand wig loan that I absolutely adore. I had to deposit about $30 for the wig, which I'll get back when I return it - whenever I'm done. They have a psychologist, physiotherapist and groups. The groups aren't meeting until September, though, as they're off for the summer. The only downside is that everyone is Spanish, and I'm not fluent in Spanish. Do you belong to an organization for support?

I'm getting my infusion every three weeks. I have four infusions of AC, with two down and two to go. Then I'll still have Herceptin infusion, hormone pills and radiation. What's your treatment schedule?

PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
7/31/15 9:27 A

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I received a pre-tied scarf free through the good wishes website. http://www.goodwishesscarves.org/ I also received a free wig through another website. http://www.womeningodstrong.com/ Living in Southern Illinois, I actually have found bandannas pretty cheap at walmart work fine too oh and biker wraps.

I found several places for financial assistance online. 1 already told me they are out of funds. I am getting all the paperwork together for the others. Thanks for all your help.

I just completed my second chemo too, last Thursday. How often do you get chemo? I usually feel pretty good until Sunday and Monday and then I feel pretty good again. The nylasta shot really makes me achy but I know it's working!!

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
7/30/15 1:27 P

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Julie, how are you holding up? Been thinking of you. How is work going and your scarves hunt? What about your search for financial assistance - any luck? To show you how to tie scarves, there are lots of videos on YouTube. Here is one of my favourites:

www.youtube.com/watch?v=kCHV
W-PuXDQ


PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
7/24/15 11:58 A

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I can't work in the classroom due to the kiddos germs and of course avoiding vaccines so it was suggested that I wear a mask and gloves when in the classroom with them. I go in to visit them when I am there as long as I am feeling ok. I don't do the gloves I just wash my hands even more! But I do wear the mask. I had been wearing it in the office when others are in there because some of the adults I work with just don't get it. But if I'm by myself or just with my boss, I don't. The kiddos have been very good with everything. I started wearing a hat since my hair has been thinning but if they ask I will take it off to show them. And my co-worker has been cutting my hair because it was pretty long before this started so they are usually the first ones to see my hair after a cut. It was funny the first time because they laid down for nap I had long hair but when they woke up it was shoulder length. The last time it was shoulder length and when they woke up it was much shorter. And they ask before they give me hugs just to make sure it is ok. But we talked about it a bit before I quit working so they would know.
The only ones that really have issues are the babies but that is to be expected. It's like I hear Ms. Julie but I don't see her - a little confusing for them. I don't go in there very often right now.
But I do visit my group every time I can for short spurts - They are the preschoolers.
I also wore it to my daughter's doctors appointment. And to the hospital. Too many germs there!! But not shopping and such. Thanks for all your help!



Edited by: PRINCESS_JMH at: 7/24/2015 (11:59)
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CARPROTH's Photo CARPROTH Posts: 19,320
7/24/15 10:55 A

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I'm with Shari about the mask - only with a low white count, not regularly. One way several women I know faced the hair loss was not to wait as it came out in clumps on the pillow, but to host a "coming off party" for friends and family. Healthy snacks/beverages are served, people bring/read messages of support and solidarity, and your head is shaved to just get it all off at once. One woman with small children even brought multiple colored markers, and once her head was bald, invited the kids to give her a pretty substitute for the hair. She wound up with a fantastic mural of sun, flowers, and happy stick figures across her pate, and every time she showered and washed it off, she got a new picture. When chemo was over and hair began returning, the kids were actually a bit disappointed they had lost their canvas. She took what could have been a scary situation for the children and turned it into a fun learning experience. I'm so glad to hear the results of genetic testing - your girls will have to be vigilant, but nothing to get tense and worked up about.

Have a day filled with light and sunshine - you're alive and fighting!

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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7/23/15 3:45 P

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Julie, I agree with Kay to ask about the guidelines for wearing a mask. I was told anytime my white blood count was 1.00 or below, but your oncologist might have a different opinion on that. Anytime mine are below normal though, I try to be cautious, especially avoiding crowds when I can.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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SIMPLELIFE4REAL's Photo SIMPLELIFE4REAL Posts: 9,709
7/23/15 2:39 P

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Julie, I never wore a mask while on chemo except for one time when I had to sit in a crowded waiting room in a hospital for a long time. It's a good idea to ask your doctor that question. Your doctor can give you guidelines on when to wear a mask.

I was pretty cautious during chemo about being in crowds. The main thing I remember getting warned about was not eating raw foods (like salads) in restaurants and to be careful about washing my hands.

The one issue I ran into was getting UTI's. I think they were from having sex with my husband. Some of the younger ladies that I know that went through chemo were told that their partner should always wear a condom while their wives were doing chemo. I guess my doctor didn't think to tell me that since I was "older." Oh well....

Kay from Tennessee



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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
7/23/15 7:58 A

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Thank you for all your support already!! I knew this was a good team to join!! emoticon emoticon emoticon emoticon emoticon emoticon

Edited by: PRINCESS_JMH at: 7/23/2015 (07:59)
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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
7/23/15 7:52 A

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I have found some websites to help with wigs and scarves. I also found some for financial help. I will be filling that paperwork out today during my treatment!! Might as well do something productive!!
My boss is working with me. While I can't work in the classroom due to the kiddos. I can work some in the office. I have been working like 10 hours a week in the office - originally she said 1-5 so I am happy with the 10. But when used to working 32-40 that is a big difference. But I have had a lot of good days with the first treatment (she lessened in by 20% to make sure I could tolerate it) - not so sure if I will have that with the second one(full dose)!
I wear a mask if I go anywhere near the kids and with my hair thinning so much right now I am wearing a hat too. I was worried it would scare them but they are very accepting. Lots of questions which is very normal for them anyway but very accepting. One of my students continues to tell me he is going to beat up my doctor since she won't let me come back to work. I remind him that she is making me feel better!! It is good to see them but I would rather be in the classroom everyday and I hate the masks!! I am finding it easier to breath in them now but at first it was awful.
Do you wear masks in public - like grocery shopping? I definitely have a bunch of hand sanitizer, but wasn't sure about a mask. I avoid anyone I see coughing or sneezing - especially if they don't cover but I've always done that!!

Edited by: PRINCESS_JMH at: 7/23/2015 (07:58)
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PRINCESS_JMH's Photo PRINCESS_JMH Posts: 997
7/23/15 7:48 A

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I was tested for 13 genes. Brca 1 and 2 were the first on the list. All came back negative. When I went for the testing, I found out so much about the medical history in my family. On my Father's side, who I don't have contact with - there is a high rate of colon cancer. I had no clue. My paternal grandmother had only one breast - so I was aware of this - but that was it!! So part 1/2 the panel was breast obviously the other 1/2 was colon. All negative. But since your body has so many genes they called it an "not informative" result. But to me it answered the most important ones in my treatment plan no BRCA!!!! But both girls are aware that they will need to get Mammograms even earlier and to do their monthly self-examines.

It has been a long process and I am just beginning. But joining this team was one of the best things I have done! I can tell there is a lot of support here!! Thanks for your info!

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7/22/15 3:48 P

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Welcome to the team Julie!


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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7/22/15 3:30 P

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emoticon emoticon Welcome to this group which is very supportive as you can tell by their quick responses already.

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SIMPLELIFE4REAL's Photo SIMPLELIFE4REAL Posts: 9,709
7/22/15 2:33 P

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Hi Julie,
I was also triple negative, stage 2b. I'm coming up on the two-year mark. I used to live in Illinois (Palatine) and go back there frequently. Wishing you the best with your treatments. I'm sorry I don't have any suggestions about financial aide.
Hugs,
Kay

Kay from Tennessee



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,542
7/22/15 12:02 P

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Welcome, Julie. emoticon

I know what you mean about the cancer taking things away from us. I'm not able to work now at all, due this and my other medical problems. Like you, I am also on limited funds through my government disability pension, and this makes the battle tougher, because there are a lot of things that you can buy to make the journey easier, like pretty clothes, wigs, fantastic make-up, massage, spas, trips, etc. But everyone has something to live for, and that's what I'm trying to keep in mind - counting my blessings. We all have them. Money is just one blessing that many people don't have. I do hope you can find all the support you need in your journey.

Cristina xo

CARPROTH's Photo CARPROTH Posts: 19,320
7/22/15 11:03 A

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emoticon Julie,

Glad you found this site. I'm a five-year survivor and the women on this team have continually given support and information that has helped me navigate the treatment path. I don't know where in Illinois you live, but finding a local support group will put you in touch with a wealth of knowledge and resources available in your community. There are organizations out there who help women undergoing treatment with financial aid, childcare and housekeeping, nutrition and exercise regimens, and emotional/psychological shoring up. If you haven't done so already, please search these out in your area and take advantage of all they have to offer. Just go on-line and type in 'breast cancer support' followed by your municipality or county and you should get several hits to use as a starting point. Getting tested for brca 1 and 2 will give your daughters/granddaughters information on whether they are at increased risk of developing this disease, and finding your oncotype dx score will help assess the probability of tumors returning in your body at a later time. Information IS power, and is your best starting point for planning your campaign against cancer.

Stay strong,
Carol

Edited by: CARPROTH at: 7/22/2015 (11:09)
Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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PEACEFUL-SPIRIT's Photo PEACEFUL-SPIRIT Posts: 16,459
7/22/15 10:31 A

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emoticon emoticon emoticon

Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

Motivational Quote:
"You have within you a supply of energy limited only by your ability to discover and develop it. In body, mind and spirit, you are endowed with capabilities far greater than you know, keep reaching for your potential. "




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7/22/15 9:45 A

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Hi. I'm Julie. I was diagnosed with triple negative breast cancer the last part of May. All the genetics testing came back negative. I am going to my second round of chemo tomorrow. I will be doing 4 cycles and then we will see about lumpectomy and then radiation. My body handled the first round of chemo pretty well but I didn't get a full dose. She was worried about my size, as I am "a big girl". and I am short so I don't have as much bone marrow. Anyway, this time I get a full dose. I normally work at a daycare as a preschool teacher/assistant director. Now due to chemo, I can't work directly with the kiddos. So in a way I feel that chemo has directly taken away 2 things that define me and who I am - My teaching and my hair. It has been a very challenging few months with a few more months ahead of me. My husband has been as supportive as he can. He had multiple myeloma in 2010 so had some insight on the chemo and procedures. It has helped that he could tell me what to expect! I am finding some sources of financial help but that has been difficult as well. Where I work - there is nothing. I do not have a child under the age of 18 for public cash assistance. I will not be out of work for 12 months or more for federal assistance. I do not have disability insurance. I have found breast cancer freebies online. But if anyone has ideas for financial assistance with non medical bills - utilities and such please let me know.
I live in Illinois. I have 2 daughters 19 and 24 and 1 granddaughter who will be 4 in October. I worry about them having to go through this now too.
Gosh I feel like i am ranting on and on.
I will not be on Spark everyday but will try to be on at least once a week.

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