IDC is my diagnosis.....here is my story

pinkpower78

My name is teetee78 and I am 34 years old. I am an African American single mother of two children; 11 and 13 and I am the youngest child of 8. My journey started just a few months ago in August 2012, when I was diagnosed with Stage 2 Grade 3 Triple Negative Breast Cancer, also invasive ductal carcinoma? My world, as I knew it, was over! I initially discovered the small knot back in March 2012 but circumstances prolonged my capability to get to the doctor. I relocated from Raleigh, NC to Columbus, OH after living there for 7 years. I had previously lived in Columbus for 26 years. After a failed business deal gone bad and the fact that I lived with my parents and they had filed bankruptcy and were moving back to Indiana, I stepped out on faith and moved too. I, my kids and my kid’s father moved in with my sister, her husband and their 3 kids. After a month, in April 2012; we all became homeless! My sister apparently was not using the money that I and my kid’s father were giving her to pay the rent. We all went to the YWCA homeless shelter. Because I was in between jobs and had limited funds, I could not get healthcare; hence, I could not get to the doctor to see about this knot that was now twice the size. Because my sister was evicted while I was at work, all of my things; including myself and my kid’s social security cards and birth certificates; were set outside and lost!! Because of this reason, I could not go to social services to try and get help because I had no identification. The shelter helped me get the birth certificates and social security cards, which came a month later. Moving right along, myself, my kids and my kids dad got on our feet; and with the help of the YWCA were able to secure a low income apartment, we were thrilled! With us both working, things started to get better in April 2012. In July 2012 I finally got my Medicaid card in the mail and immediately scheduled an appointment with my family doctor. 2 days before my scheduled appointment, I ended up in the ER due to severe pain in my breast. I was immediately referred for a mammogram. On August 2, 2012; the day after my oldest child became a teenager, I got the disturbing news of my mammogram results. I have since then had emergency surgery for a port and have had 3 rounds of chemotherapy. My first round of chemo was September 19th 2012; 8 days before my 34th birthday. My kid's father left and abandoned us the day before chemo started; stating that he was not ready to deal with any cancer. After my second round of chemo on October 3rd 2012, by that weekend; around October 7th 2012 I removed my head scarf to discover that all; I mean ALL of my hair was in my scarf and not on my head! Even though the oncology nurses had warned me of such, I was still devastated! Because I was not able to work anymore due to the hectic chemo schedule and the sickness that lasted for days after, I was threatened with eviction. With no money and no help in sight, my 2 children and I were forced to move in with my parents. I was very thankful for that; seeing that I was just homeless months prior. The problem was they lived in Indiana and they had a small 2 bedroom apartment. So the guilt of having to move my children now for the 3rd time this year and being crammed into one room left me feeling hopeless! Today; November 2012, I am happy to say that I have food and shelter and support from my parents and I have began chemo treatments here in Indiana. The enormous mass has shrunk a bit and I am treading along on this journey. My oncologist was concerned that the tumor was not shrinking quickly enough and referred me to a breast surgeon. I met with her last week and she suggested a single radical mastectomy, it is scheduled for next week on Thanksgiving. I am soooo nervous and anxious because she said that one possibly two of my lymph nodes are swollen and that may indicate involvement. In addition to that, my hemoglobin is 7.9 and I may have to have a blood transfusion on Monday if it hasn’t gone up to at least 10. Has anyone out there had a blood transfusion or a mastectomy?  So sorry for writing a book but I am in such a panic for a number of reasons! I always bragged to people that I have never been in a physical fight in all my life but I tell ya I am in the fight of my life!!!! I have to survive to be here for my kids! I just need encouragement! I am praying for us all that a cure will be found!!!

cowpower

Pinkpower- I had a single modified mastectomy last Feb. The surgery was no big deal, really. Not much pain at all and back to my daily life soon. I am so sorry about everything that has happened to you lately. You sound like a very strong woman to get to where you are. I hope your family can help to keep you strong. I know mine has. This site is the right place to come for support and information through your surgery and whatever treatment comes after. You will receive love and support from your sisters here, as I have.

voraciousreader

Teetee.... I am so sorry to hear about your delayed diagnosis and all that you've been going through this past year. Hurricaine Sandy displaced me from my home and it was a nightmare that we made the best of. I can only imagine under your circumstances what it was like for you in light of your diagnosis and treatment.



Regarding blood transfusions, I had several and felt much better afterwards. I wish you well with your surgery this week.





You mention feeling sorry that describing your experience for us seems like a book. Please don't feel bad. Instead, write as much as you like. Have you written before? I am curious because I see in your writing GREAT potential. If not, I hope once you are well you consider advancing your writing skills and use them professionally. You express yourself well and that is a gift.



My thoughts and prayers to you.

macyhen111

Hi Teetee, I will be praying for you and your family. I am new to this Breast Cancer thing too. I was dx on October 4th 2012 with IDC with calsifications in my left breast, I opted for a modified radical mastectomy on the left breast and a simple mastectomy on the right. I did'nt want to have to go through this again. I had my surgery on the 18th of October. I had to stay in the hospital for 5 days because my wbc went through the roof. I am doing really good now, they have removed 3 of my 4 drains. I am having a port put in on Nov. 21st and they will take out the last drain then. I am doing really good so far. I have minimal scaring and full use and range of both of my arms. I began chemo on the 28th and am trying to prepare myself for that. I thank God for my wonderful family, all 3 of my grown children flew down for the surgery, and my baby girl is going to move here to take care of me, she has been here since the begining. I feel so blessed, not to have cancer but to have all the Love and support that I am receiving. I will pray for you and your family that you beat this thing and go on to live a happy and healthy life with your family and children.

pinkpower78

Hi Macyhen111, 

Thanks so much for your kind words! After your surgery did you have lymphodema? I have read that alot of people get that when their lymph nodes are removed. So since your surgeries have you resumed treatment? IE Chemo or Radiation? Yes, I too feel blessed that I do have my family to support me. My parents are 65 and 63; and they have dropped their whole lives to be here for me and for that I am very thankful. My dad had 2 heart attacks in June and he had prostate cancer in 2008 and my mom has diabetes but they are both doing great now and he tells me all the time that he is cancer-free and I will be too! 

pinkpower78

voraciousreader: 

My prayers go out to you and yours regarding Hurricane Sandy. I hope that you are able to start getting your life back together after such a tragic event! After reading your post I feel so much better about the whole blood transfusion thing. I figure that if it is neccessary then it is neccessary. I have always wanted to write a book, but now this has definitely given me a reason to pursue my dream! After this is over, I want to share my story with the world; for those that will be newly diagnosed to shed some light and support. I have claimed that I will be a survivor and that is what my book will be about. The trials and tribulations I went through to get to victory. I also want to start a food pantry for breast cancer patients, open up a nail salon and wig store for cancer patients and raise money daily for cancer patients with financial hardships. I just want to give back in any way possible. In the beginning I just felt so overwelmed and alone and there were not alot of people who cared. I felt as if people just wrote me off as if it was over. I always bragged that I have NEVER been in a physical fight in my life; but I guess you have to be careful what you say. God has a funny sense of humor because I am 34 years old and this is the biggest fight; physically, mentally, spiritually and emotionally, of my life!!! My faith in God will carry me through this and I will live to tell my story. 

macyhen111

Hi Teetee, no I don't have lymphodema at all, they removed 11 nodes only one was positive. My surgeon is amazed at my recovery. I will began a series 3 chemo starting on the 28th of this month. After the chemo I will need a total hysterectomy to avoid getting uterine cancer from the tamoxifen I will be taking for  for 5 years. I will not receive radiation.

Galsal

Teetee, what a strong woman you are...already thinking ahead of what you'd like to do after your recovery to get your story out and help others too!

Mimidi

My prayers are with all of you.

phil_2012

teetee, your story is an inspiration itself, life has been good to me except for this health issue which all of a sudden pops out from nowhere....and I just thought everything became blurred... I had my MRM last Nov.8, when the lab. results came out,  I decided to focus on the " half-full" and not the " half-empty" side of the story... although our health issue is out of our control , am sure how we deal with the situation is within the bounds of our control...our journey will not be easy but keep on praying for strength, and will beat this all together  ......

macyhen111

Had my port put in today. It is more painfull then the double mastectomy. But I am glad it's done. I began my chemo on the 28th and I am a little scared. I don't mind losing my hair I just don't want to feel sick. Does anyonr have any suggestions on how to avoid the feeling sick? I am praying for you Teetee I hope your surgery went well!!

adagio

Maychen - About feeling sick, the oncologist should provide you with plenty of  anti-nausea drugs to keep from vomiting. However, I did still vomit considerably after my first chemo yesterday. The onc has me on a different medication now. Also you will be given phone numbers for the chemo nurses day and night. I had to call 3 times in my very first night and they were very helpful. I even called my oncologist - so if you feel really sick don't hestitate to call - there will always be help for you.

adagio

pinkpower78 - did you know there is also a page on this stie for those of us with triple negative tumours.

macyhen111

Thanks adago! My oncologist prescribed zofran and another anti nausea med. Does the ill feelings last long because I have to take a trip a week after my chemo begins and I am worried I won't have the energy for it.

pinkpower78

thanks all for your thoughts and prayers! surgery went well; I had to stay an extra day in the hospital because I was allergic to the pain meds and was itching all over! I am still in shock but I am glad it is over! Now just have to wait for the pathology report to come back to plan our course of action. Macyhen111 I'm sorry to hear your port experience was painful, I was put to sleep to get mine. Although it messed up and I had to have it removed and another one put in. As far as chemo and being sick, you will feel sick even with the meds. Zofran was a joke to me, it didn't help at all. I had to take ativan and phalagren. It is the worse sickness ever! Just keep a lot of crackers and ginger ale and soup on hand. Also you will feel extremely tired. Everyone is different though so maybe yours won't be so bad but I know my sickness lasts at least a week after chemo so I don't know if you will be able to take that trip. Keep us posted on how it goes. 

cowpower

Pink- so glad you are back and did ok. Remember, you just did the most important think, removing the source of your problem. The rest is cleanup of the leftovers! Treat yourself well while you recover. We will all be thinking of you.



Macyhen and Adagio, Please do not suffer with nausea, medications can be combined in different ways to enhance the results. When I was on AC chemo, I took a combination of ativan, zofran and compazine on a scheule where I could take one or another pill every two hours. I needed the whole bunch for two or three days, then just ativan for one. It was a lot of pils, but the nausea stayed under control. Your docs office can help you work with the meds to your best advantage. If you start using meds in combo, they might bind you up a bit- you may want to consider adding a stool softener- learned that one the hard way:)

macyhen111

Thanks for the advise ladies. I am hoping I will be one of the lucky ones and not have to bad of an reaction to the chemo. I will keep you posted on how it goes. I'm not to worried about losing my hair but approx how long after chemo begins will it start to fall out? I have plenty of scarves and hats that my kids provided but I haven't found a wig to my liking yet.

pinkpower78

Cowpower you rock! Thanks for the encouragement! Very positive way to look at things; the source of my problem is gone and now on to the clean up xoxoxoxoxo 

Macyhen111 Yes Cowpower is right, I forgot I was on compazine too and like her regiment, I took ativan and then compazine, alternating every few hours; it does help to keep the nausea/vomiting down. They also may give you dolcolace to help with constipation. As far as the hair falling out, it just kind of depends. Mine happened after my 2nd treatment; 2 weeks after chemo started. First it was just clumps and then one morning I went to take off my scarf and ALL of my hair was in my scarf and not on my head! Even though my oncology nurse told me it would happen, it was still devestating. For me, I still have eyebrows and eyelashes but it looks like a shaved my armpits and "downstairs". If you go to goodwishesscarves.org they will send you a free scarf and they have some pretty ones. Also, you should be able to find resources in your area that will provide you with free or low cost wigs. But you may be one of the lucky ones; I know of a few people who didn't loose their hair at all, it just thinned out. Keep me posted and good luck to you xoxoxoxoxo

dltnhm

Your oncologist should have anti nausea meds that you will receive in an infusion pre-chemo. Also ask about the prescription anti-nausea meds and have them on hand and take them pre-emptively.

I never threw up on any of my chemos, was able to run, and after my 4th AC treatment, got in the car with my husband and sons and drove from the Chicago area to Kentucky and then on to Tampa for my nephew's wedding.



You need to hear the positive stories too :-)

macyhen111

Again thank you ladies you definitely are helping me out more then you will ever know. It feels so good to have somewhere to come and ask questions and get positive, helpfull, heartfelt feedback. I am overwhelmed with all the things that you ladies have taught me. I will take the advise you have given me to my doctors appointment. I will keep you posted on my chemo experiences. Love Y'all !!!