Life After Breast Cancer – Thriving, Not Just Surviving

Two years ago today September 13, 2012 my world was turned upside down by a diagnoses of Triple Negative Breast Cancer. It has been a crazy journey, but I think I am finally beginning to see the light at the end of a very long tunnel. Mammograms, 6 cycles of chemo, 33 doses of radiation, 2 major surgeries and 4 minor surgeries and numerous other procedures and I am now on the track to enjoying a healthy life. I am so grateful to my husband, my children and my extended family and friends for all of their love, prayers and support. I am also grateful to my wonderful team of doctors, nurses and health care professionals – they made an incredibly difficult time so much easier to bear.

Today we are back at our beloved Mother Earth News Fair at Seven Springs Mountain Resort in Pennsylvania for the 4th year. Earle and I were able to have the thrilling experience of zip lining in the Laurel Ridgeline Canopy here at the resort. It was a truly exciting way to celebrate being alive and healthy. So happy to be healthy enough to be able to participate in such a physically demanding experience. It was an awesome way to celebrate my “cancerversary”!

I would like to share more of my experiences with you, but I do not have my computer here with me this weekend. Please comment or like this post if you would like to hear more about my experience dealing with breast cancer. As many of you know, I was able to quit my job in the Spring. I have been busy enjoying life and healing emotionally and physically! I now have the time and energy to record my experiences. Before, my long commute, stress of my job, physical therapy and the cumulative effects of chemo, radiation and surgery left me too exhausted and drained to try to put my thoughts down in print.

Thanks to all of you that kept me and my family in your thoughts and prayers during the last two years. It has meant so much to me to have your support!

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Triple Negative Breast Cancer Day – 3-3-13

Today has been designated the first annual Triple Negative Breast Cancer Day by the Triple Negative Breast Cancer Foundation which helps to raise awareness and to fund research to find a successful treatment and cure of triple negative breast cancer.  As I have said in the past, I have triple negative breast cancer.  That means that my tumor was negative for the three most common receptors known to fuel breast cancer tumors – estrogen, progesterone and the HER-2/neu gene.  There are targeted therapies for other types of breast cancer depending on what types of receptors the tumor has.  At this time, there are no targeted therapies for triple negative breast cancer which occurs in 15-20% of cases.  The only treatments available to me are chemotherapy, surgery and radiation.  One good thing about triple negative breast cancer is that it usually responds well to chemotherapy – in my case it responded very well.  The bad thing is that triple negative breast cancer is more likely to recur in the first 5 years after diagnoses than other breast cancers.  There are no targeted therapies to prevent the recurrence at this time.  If it doesn’t recur within the first five years it is very unlikely to recur.  I guess I am really looking forward to Dec 12, 2017!!!

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http://www.tnbcfoundation.org/ is a great resource for women with triple negative breast cancer.  The website has lots of information about triple negative breast cancer and research.  There is also a forum so that you can interact with other triple negative breast cancer patients.

I plan to enjoy life as much as I can without worrying too much about the possibility of a recurrence.  I also plan to eat well, exercise, reduce stress and follow my doctor’s orders.  My last regularly scheduled appointment with my medical oncologist is tomorrow and my planning meeting with the radiation oncologist is Tuesday.  There is a good chance I will be back in the classroom really soon!  Should be a very busy week!!!

I  also wanted to mention an awesome breast cancer online support group – http://mybcteam.com/.  There are over 3000 women sharing their experiences with breast cancer from all over the country – from the newly diagnosed to long time survivors.  It is a very positive place.  I encourage all touched by breast cancer to join My BC Team so that we may share our journey together.keep calm

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Life As I Know It….

Yes, I am still alive and kicking!  Sorry it has taken me so long to catch up on my blog.  My surgery ( I’ll finish my blog about that really soon – I promise!)  was on December 11, 2012 – 8 weeks ago yesterday!  SO hard to believe it has been so long already.  My pathology report came back after the surgery and there was good news and not as good news.  The good news was that the AC chemo worked so well against the tumor that my medical oncologist recommended only two more cycles of AC and no Taxol!!! Yeah!  I was so worried about the possibility of losing fingernails and toenails and neuropathy.  The not as good news is that my breast surgeon was only able to remove the sentinal lymph node because the other lymph nodes were scarred down from the chemotherapy – that lymph node was still positive for cancer.  I saw the radiation oncologist yesterday and she said that the lymph nodes were probably scarred down because at one time they had cancerous cells and I probably would have had 3 or more positive lymph nodes if I had my surgery first – which is a clear indication for radiation therapy.  She said that although I fall in a “gray area”, I would sill have at least a 25- 30% reduction in the chance of recurrence of my breast cancer locally if I had radiation.  I definitely don’t want to do this again – so I guess radiation is in my near future.

Chemo 5 on a snowy day!

Chemo 5 on a snowy day!

 

My 5th chemo was on January 17th.  It went very smoothly and I had very little side effects.  I wondered if they gave me too small of a dose since I felt so good!  My oncologist called me and told me to not go back to work the next week because she wanted me to rest at home and let my white blood count build up naturally.  So I stayed home and rested up.  A week later, I had my blood levels checked because I wanted to see my nieces perform in the musical, “Mulan”, that night if I wasn’t too low.  My WBC was 3.4 so I was really happy!  The musical was postponed until the next week because of snow though! Oh well!  I finally went back to work for the first time on January 28th.  My c0-workers were not in the office that day so I went over to say hello to my co-workers at my child development center.  I figured I had just wasted my time driving so far that day, but they put me to work on some filing.  I figured it was my dry run!  I worked a whole 3 hours.  Then I met Laura and Diana and Earle and Doug for dinner before the musical.  Dana saved us seats in the front row and I had a whole row of kids in front of me – I have to admit I was a little worried about germs – but Earle had started giving me neupogen shots again the day before – so I thought I was golden.  Silly me!  The musical was wonderful and I was so glad to be able to see my nieces first performances.

With my nieces after their performance of Mulan.

With my nieces after their performance of Mulan.

On Tuesday, I worked for a whole 4 hours.  I figured I would build up to 6 hours by the end of the week!  I really didn’t do much more than make copies and make plans to buy tickets to Disney on Ice for Diana’s 21st birthday!  That night I met my good friends Maureen and Tina for dinner at TGI Fridays.  I had missed a “happy meal” the night before because of the musical and they were gracious enough to meet me on a different night!  The company as always was delightful and time passed quickly.  We were making plans to celebrate my 6th and final chemo on Februrary 7th.  I was so excited about getting my chance to ring the bell!

Early Wednesday morning I had my lab appointment.  We were shocked to find out that my white blood count had dropped to 1.0!!!  Yikes!  That was the lowest it has been since I started back in October.  My oncologist said that my body was still recovering from the surgery. It was also the 5th chemo and the effects on my body were cumulative.  I guess the dose wasn’t too small after all!  So of course I would not be going back to work the rest of the week.   So far I had only worked 7 hours since December 7th!  Thank God for my co-workers that donated hours to me.  I was able to get 2 full paychecks thanks to them.  This is a hard time of year to be out of work – the beginning of the new school year (college text books are way too expensive!), the beginning of birthday season (4 out of 6 of our family members have birthdays in February!) and all these co-pays add up fast!

We had a full, but relaxing weekend.  Diana was home for the weekend and wanted to learn how to crochet!!! I was more than happy to teach her.  My sister and my niece had started crocheting the week before.  It was cool that they were all interested at the same time.  One of Earle’s childhood friends, Jon, and his wife, Chris, came to the farm with their kids and dogs.  The girls spent so much time outside with the animals I am surprised that they didn’t turn into icicles!!! The menfolk practiced their shooting skills while the women folk visited in the family room.  Our dogs enjoyed having a play date too.  We even had my favorite pizza – Ledos!  Yummy! They even brought a delicious dessert.   Around 8 pm I started yawning and Chris packed up her family right away so that I could get my rest.  It was a lovely visit.

Beautiful flowers from the Doerings to brighten my day!

Beautiful flowers from the Doerings to brighten my day!

Then it was Super Bowl Sunday. My sister and her family and my Dad came over.  The girls and I crocheted and  Earle and Neil cooked.  We were all rooting for the Ravens and the girls were wearing purple.  The first half was great…the Ravens were on roll.  Earle took Diana home at half-time.  When the lights went out  at the Superdome, everybody else decided to go home too.  I was getting tired anyway.  The lights finally came back on and the 49’s came roaring back.  By the time Earle got home it was a close game.  What a relief when the Baltimore Ravens finally won.  I am happy to say that my Redskins beat the Super Bowl Champs! 

I was still tired on Monday so I stayed home and rested.  I had my appointment with the radiation oncologist Tuesday afternoon so I didn’t go to work then either.  Yesterday morning at 8 am (February 6th)  I had my lab work done and an appointment with the medical oncologist.  I was waiting in the exam room and I overheard a nurse on the phone with the Infusion Center saying that my white count was too low and could they reschedule my chemo?  DARN!!!  Dr. P. came in and told me the bad news that my last chemo would have to be postponed until Monday, February 11th.  My white count was only at 2.2.  She was also worried about my granulocytes.  I was at .9 and she wants me to be above 1.3.  Granulocytes help to fight infection.  When your granulocytes are low you are more likely to get a severe infection.  She said that we could push it, but that the benefit would not outweigh the risk.  She also said that I needed 3 more days of Neupogen shots. Oh joy!  I think that the shots are making my muscles ache.  I am fine sitting down, but when I first get up I feel really stiff and sore.  She also said that I should probably not go back to work for 3 or 4 weeks after my chemo because of the risk of infection.  Wow!

After the bad news, I was so grateful that I had an appointment with Melinda for reflexology.  It was so nice to relax and chat and try not to worry about how much longer this whole process was going to take.  I also found out that it is really a small world.  Melinda met a friend of ours, Helen, at a book club and she told her that she had read about her on my blog!  I should shout out to Helen’s husband Ron for keeping us in soup over the last few months!  So many supportive friends and family are praying and sending good wishes – it helps to make this road a little easier to travel.

I am very disappointed that I don’t get to ring the bell tomorrow!  I was looking forward to putting the chemo chapter behind me.  The radiation chapter will not begin until 4-5 weeks after my last chemo.  It will last 6 and a half weeks.  The reconstruction chapter can not be finished until 6 months after the radiation chapter ends.  Seems like I will never make it to the end sometimes, but I realize that I have come a long way.  I have to just keep swimming….swimming

Interruption!

We interrupt the chronological order of this blog to bring you a real time update!  A few weeks ago I had a breast sonogram to see if my tumor had shrunk at all after 3 rounds of chemo.  The good news – the tumor hasn’t grown! The bad news – it hasn’t noticeably shrunk.  My team met and decided it was time to remove my tumor (along with my breast!)  The breast surgeon wanted to do the surgery 2-3 weeks after my last chemo which was 2 days ago today.  Yikes that’s quick.The big problem would be coordinating the two surgeons schedules – the breast surgeon and the plastic surgeon. I have opted to have a bilateral mastectomy with immediate reconstruction. The past week has been a flurry of doctor’s appointments. We got the word on Wednesday December 5th – my surgery is scheduled for Tuesday, December the 11th!  That’s less than a week away.  I appreciate your support and prayers through this difficult time.  At least by Christmas the worst should be over!  After the surgery, they will look at the tumor and decide if the AC chemo was working at all – if it is killing the tumor I will have 2 more cycles of AC.  If isn’t affecting it too much I will just have 4 more rounds of T. 

I appreciate your support and prayers and good wishes through this difficult time.  I really feel that it is helping me stay positive and keeping my spirits up.

My friend Lynn Brown Natolly made this for me!

My friend Lynn Brown Natolly made this for me!