From the beginning... written 2010
Today a friend asked me to post my story, with the hopes that the information could help other women be proactive, or at least understand what it really means to have breast cancer. Before I started this process, I knew very little about chemotherapy, or even what other tests were available beyond mammograms and ultrasounds, or when its important to ask for more tests.
My story actually began about 12 years ago, when I had a lumpectomy and biopsy for a lump I found at age 35, before I'd ever had a mammogram. I subsequently had my first mammogram that did NOT show the lump that we knew was there. The biopsy came back as benign, but I was told I did have atypical hyperplasia, raising my risk for cancer in the future. If I knew then what I know now, I could have then gone on a cancer drug that would have reduced my risk of getting cancer by 45%. If it had been suggested 12 years ago, I may not be where I am today.
Ever since then, I have had yearly mammograms and was under the care of a breast surgeon, in addition to my yearly gynecologist appointments, for the next 6 years....
For the last 5 or so years, when I would go for my yearly mammogram, I also had ultrasounds, usually at the same time as my mammograms. The radiologist usually wanted extra views of cysts or calcification, but never anything more serious. What I now know is that mammograms don't work very well with dense tissue, as dense tissue is white on a mammogram, as is cancer. Also, ultrasounds can only be used to look at something that is suspect. It cannot be used to just go looking for problems. So, self exams are VERY important!
This past September, I found a new lump on my own. I went into see my gynecologist about 3 weeks later, who didn't seem overly alarmed, but I went for my yearly tests in November. My one regret was not scheduling my appointments in a more timely manner. I assumed it was a fibroid. At my November 9th mammogram/ultrasound, the radiologist told me she thought the lump was very suspect and should be biopsied.
I went in two days later for an ultrasound guided biopsy, but I hadn't met with the surgeon yet and the radiologist felt that for a better exam, it should be before any biopsies. My concern was that my surgeon is usually very difficult to get into see. But the radiologist called her office and was able to get me an appointment the next day.
November 12, I went into see the surgeon who by the end of my visit told me that I had cancer... that she was 100% sure. I was a little shell shocked. She explained that I was a candidate for a lumpectomy where the mass would be removed along with a margin of clean tissue. She would also remove my sentinel lymph node to see if it had spread. I had never heard of a sentinel lymph node before, but it is the first node that would be affected if the cancer had spread. She also asked for me to schedule an MRI to make sure everything else was ok.
One week later, I had the MRI, and of course, it did come back with something suspect. The day before Thanksgiving I had an MRI guided biopsy, which came back as negative. All of these tests and waiting was driving me crazy, and was by far the hardest to deal with, especially because the biopsy result could have been positive, with an end result of mastectomy.
What I learned leading up to my surgery is that the tumor wasn't growing over night, and having all the appropriate tests prior to surgery and planning well was the best defense. I also learned that researching online is very helpful, but to be careful not to read about other people's diagnoses and let your imagination run wild. Everyone's diagnosis is individual, based on age, size of tumor, margins, lymph nodes, grade (aggressiveness), whether its estrogen/progesterone receptor positive, her2/neu positive/negative (aggressiveness), genetic testing and other health issues.
From surgery day forward
December 8th, I went in for surgery and was home by noon. The surgery went well, with little discomfort.
A week later, I received my full pathology report. The tumor was 1.9cm, making it a stage 1 tumor (under 2cm). It had clear margins with no vascular involvement (all good). The lymph node, which initially was thought to be clean, came back as having a micromet (small trace cancer (.38mm)). Had it been .18mm smaller, it would have been considered node negative. There also happened to be a second node attached to the first that was negative. This lymph node involvement made the cancer a stage 2 or stage 1b (depending on who you ask). My cancer was also estrogen/progesterone receptor positive, meaning it needed estrogen and progesterone to grow (again, all good). It was HER2/Neu negative (good), and a grade 2+ (somewhat aggressive, but not too much).
Last week, I went to see my medical oncologist, who will guide me through treatment. Based on my pathology and being relatively young, my oncologist has decided on chemotherapy, 6 treatments, once every three weeks. My chemo will be a blog category all on its own! I will in the near future have genetic testing to determine if I have a mutated gene (which would imply an 85% chance of recurrence), and depending on that result have radiation therapy or something more radical. I will also go on hormone therapy.
So... chemo starts January 18th, 2011, on my 48th birthday.
Chemotherapy
So today was the day... it also happened to be my birthday. But I was ok with that. When I visited the oncologist in late December and he told me that he wanted me to go through 6 chemo treatments, I was not surprised or disappointed. My goal was always to do whatever I need to do to be fully cured, and chemo seemed to be one more step to achieve that goal.
His suggestion was 6 rounds of Taxotere and Cytoxan. Of course at the time, I had no idea what that meant, and what side effects I might need to endure. But my nature is to research and then do some more research. This research led me to ask more questions. I found many many posts of people referring to permanent hair loss when using Taxotere, so of course I became obsessed with this data. In the end, I have decided to roll the dice and hope I don't fall into the 2-3% who never grow their hair back. The odds seemed better than chronic neuropathy (extremity pain) which is a side effect of my alternative option.
I have spent the past week gathering nail hardener and frozen peas (that's a story on its own) to tackle brittle and rotting finger and toe nails, buying Aleve and hand sanitizer, but most importantly picking out and trying to warm up to my new wig... I even bought gel to help maintain my eyebrows and lashes...
Then yesterday I started taking Decadron, a steroid to help combat fluid retention and nausea. Today, I awoke to icey roads that I hoped wouldn't interfere with my 9:15 appointment. After I successfully arrived at the doctor, they drew blood to make sure I was healthy and then they hooked me up to get infusions. They pumped me with Benadryl and Zofran (anti-nausea) and Decadron (steroid), and then the Taxotere and Cytoxan. Except for being a bit foggy from the pre-meds, it was painless and uneventful... Very glad to have my friend Miriam there to keep me company. Today I also continued the Decadron and will continue to take that through tomorrow. Thursday I go back for a Neulasta shot that will boost my white blood cell count. I hear that the Neulasta can cause bone pain, and once my steroids wear off, I fear that Friday or Saturday may be 'off" days for me. Time will tell... And then I do it all again in three weeks. This will take me through mid-May, and then i get to start radiation for 6 weeks and Tamoxifen for 5 years.
I will update my blog as I go through this chemo regime, and then I will pray for hair regrowth!! So far, I have handled all treatments rather easily... no problems with the lumpectomy or medi-port insertion, so I am hoping the chemo will accommodate me and let me breeze through. I have learned more about treatment than I could have ever imagined...
Day 2: Jan 19th... Felt good all day. I went to work, had plenty of energy... only had one 10 second episode where a heat ran through my body... Just kind of weird, but it passed. And I continued to drink lots of fluids. And on the upside, the Benadryl they gave me yesterday did wonders for my seasonal allergies. I will take the perks when they show up!!
Day 3: Jan 20th... Felt fairly well today... Went for my Neulasta shot (no effects yet from that), but had increasing fatigue as the day wore on, but did manage to work all day... and I have some teeth sensitivity.
Day 4: Jan 21st... day is starting slow... achy from the Neulasta and some general malaise.
Day 5: Jan 22nd... Much better today. All that flu-like achiness has passed, and thanks to some Oxycodone, I slept well.
Day 6: Jan 23rd... Except for some late day fatigue, I felt normal today!
Day 7: Jan 24th... The day did not start well... had some achiness in lower back and hips and felt feverish. By mid-morning felt much better.
Day 8: Jan 25th... Started day with a headache, but improved with some Tylenol and fine after that :)
Day 9: Jan 26th... Had a good, normal day today... yeah!!!
Day 10-14: Jan 27th-Jan 31st ... Another normal day!
Day 15: Feb 1st... Had a normal day, but today was the first day I saw signs that my hair was thinning... lost a bunch as I brushed it this morning... Luckily I have lots of hair, so it isn't noticeable, even to me.
Day 16: Feb 2... More hair loss
Day 17: Feb 3... This morning I realized that this was the last day I'd have my hair... lots of hair came out and the consistency was not normal... So I pinned it up and went to work, knowing tonight I'd need to cut it :(
Day 18: Feb 4... I did cut my hair last night and this morning shaved it to 1/8 inch... very weird sensation - so I tried not to think too much... then I spent the day at the wig boutique tweaking the wig and trying to feel somewhat normal... The ladies at the shop have been wonderful!
Day 19: Feb 5... Today I wore my wig all day, until I just couldn't take it anymore... itchy scalp... and I was just so hot. I hope I will get more used to it.
Day 20: Feb 6th... Very tired today
Day 21: Feb 7th... The day went well... Sported my wig to work today, and had some anxiety, but it was all fine. I also had genetic testing today... so we'll see how that goes.
Day 22: Feb 8th... Second chemo treatment today. It went well. My friend Yvonne escorted me and I followed the same regime, icing my nails, drinking lots of fluids, so hopefully I will continue to have minimal side effects. Then we relaxed with a lunch at Panera.
Day 23: Feb 9th... Felt great today... and when I got to work, I spent my first day at my new job, Registrar at PDS... so who would have thought that while going through all this, my career would progress?
Day 24: Feb 10... I started the day getting my Neulasta shot. I was fine all day until I got home at dinner time, and started to get a bit achy. So my plan is to medicate and take it easy.
Day 25: Feb 11... Less bone pain today than last time, but much more heartburn and general malaise... I took Claritin this time, which is supposed to help with the pain, and apparently it does work.
Day 26: Feb 12... Felt ok today, a little achy but mostly just tired.
Day 26-29: Feb 14-17... Felt ok... went to work for full days...just long days at a new job and was tired, but doing just fine... I also received my genetic testing results... negative, so that is a good thing!
Day 30-33: Feb 18-21... Spent weekend in Vermont and felt just fine.
Day 34-37: Feb 22-25... Back at work and feeling good.
Day 38-39: Feb 26-27... Tried to rest this weekend, but just too much to do; luckily still feeling good!
Day 40-42: Feb 28-March 2... Normal days.
Day 43: March 3... Chemo #3 today. So I am now half way done. The infusion went well, and today I took not only all my pre-chemo medications but also added Zantac for heartburn and Claritin for Neulasta bone pain. I am hoping for easier post-chemo days than the last two times. And thanks Laurie for taking me and then treating me to lunch!!
Day 44: March 4... Neulasta shot today. Still feeling good.
Day 45: March 5... I was anticipating a bad day due to the Neulasta shot, but the Claritin must have helped, because I mostly felt good all day... little bit of a headache, but Aleve took care of it.
Day 46: March 6... Not feeling 100% today... It seems that 3 days post chemo is just the day that I feel blah... Certainly not as bad as the last couple of times, as I am medicating with Zantac and Aleve, but still a little achey and "off." Hopefully it will just be today and tomorrow I will be back to normal.
Day 47: March 7... Back to work today... very tired but made it through.
Day 48-51: March 8-11... Busy, tiring week
Day 52-68: March 12-27 ... On Spring Break... I spent 10 great days in St John, sunning, swimming and enjoying some down time... I had some concerns about dealing with travel and chemo, but it all went well. My only issue was my hair, but I spent more time than I expected wearing a scarf instead of a hot wig.
Day 69: March 28... Chemo #4 today... My friend Nancy escorted me today... thanks Nancy!! And then lunched at Paneras... seems to be the routine.... I took all the same medicines, so I am hoping that I will continue to feel well. I have noticed the last few days that my eyebrows are thinning, but its only something I would notice (I hope).
Day 70: March 29... Went to work and had a normal day
Day 71: March 30... Started the day with my Neulasta shot... most of the day was fine, went to work etc, but then just as I got home at 6pm I started feeling poorly, and for the first time since my first shot, I am having neck and shoulder pain... I think some pain meds are in line tonight.
Day 72: March 31... I did not feel well today... kind of a combination of feeling fluish and SUPER tired. Luckily it is only one day per cycle that makes me feel poorly, but I do feel like this was a step backward. I felt better last time.
Day 73: April 1... Felt better today, but still super tired.
Day 74: April 2... Thank goodness for the weekend. I slept in and had a quiet day. This week I was thankful for my daughter coming home from college. In this health situation, having my family close by is important to me and enjoyed her trip home with her friends who she had in tow.
Day 75: April 3... Tired but felt ok
Day 76: April 4... I awoke feeling achy and not quite right... but I went to work and I did improve as the day wore on.
Day 77: April 5... I felt better today except I am hot all the time.... Recently I feel like I am finding more and more people afflicting by this disease... today I learned of a co-worker just diagnosed and another co-worker who just returned to work post surgery... plus a close friend from high school/college who is going through tests... It just seems everywhere.
Day 78: April 6... I took the day off and went to New York with the companionship of friend Maria, for a consultation with a plastic surgeon, researching my options for a potential reconstructive surgery this summer. Full day out and about and felt fine... thank goodness my chemo ailments have passed for this cycle.
Day 79: April 7.. Felt fine, but tired today.
Day 80-86: April 8-14... Normal
Day 87: April 15... Head cold and feeling yucky... I hope I improve soon because I have chemo on Monday and they won't treat me if my white blood cell count is too low.
Day 88: April 16...Sick in bed all day
Day 89: April 17... Felt remarkably better
Day 90: April 18... Chemo #5 today... almost done!!! My good friend Laurie brought me, and after chemo we had a great lunch at Houlihans. So far so good.
Day 91: April 19... back to work and feeling good... even worked out after a full day on the job... still benefiting from my steroids I guess.
Day 92: April 20... The day started slow... felt off. I then went to get my Neulasta shot and eventually made my way to work. The day improved until about 5pm when my fatigue set in... I spent the evening resting with some achiness, but not as bad as the past times.
Day 93: April 21... Spent the day at home resting. My achiness wasn't as bad as the last time, thank goodness, but got some good napping in and hope tomorrow is back to normal. Thank you to Miriam for breakfast and Chris for dinner... both yummy!!
Day 94-95: April 22-23... I continued to take it easy (except for mowing the lawn) and am fine except for fatigue, which seems to be compounding as I go through treatment.
Day 96: April 24... Easter... A little achy and tired today, but ok.
Day 97: April 25... Back at work today... Still a bit tired but felt ok today.
Day 98-102: April 26-30... Felt much better today :)
Day 103: May 1... Still good, and counting down to last chemo in 9 days!!
Day 105-109: May 2-9... Normal day!
Day 110: May 10... LAST CHEMO today... yahoo
Day 111-117- May 11-17... The days following chemo were uneventful... on par the last ones, staying home on the day I expected to feel poorly. And I was then off to New Orleans for a doctor's consultation, and though tired, felt well.
Post Chemo
May 17th...So, I am now a week past my last chemo and exploring my options for the next step. I need to decide whether to have 6 weeks of radiation or have a mastectomy and reconstruction. There are pros and cons to both, and my debate needs to be resolved by the end of the week. Its very daunting knowing the decision is mine, and I can only hope I don't choose wrong.
I bought myself a few days by making a radiation simulation appointment for Thursday and also asked the surgeons to start getting the insurance paperwork together,,, Hopefully after my Medical Oncologist appointment Tuesday, I will have resolve.
May 30th... Well... I have decided to go with a bilateral mastectomy and reconstruction. I will go to New Orleans and have the surgery there because the reconstruction I am getting is very specialized and the best doctors (through research) are in NOLA. I will be having a tissue transplant which requires microsurgery and a long recovery. But hopefully, in the end, I will be like new and not radiated, and cancer-free with my best odds for no recurrence... Surgery date is July 21.
Surgery
Today is just two days before I fly off to New Orleans for my bilateral mastectomy and stacked DIEP flap reconstruction, which is scheduled for Thursday July 21st.
Today is 3 days post surgery and I am doing well... In the end, the surgeon only needed to harvest tissue from one site... So recovery should be quicker...yay! I will continue to update here as I recover.
Today is two weeks post surgery. I am recovering slow but sure. I have had some bumps in the road. I have had some lung issues, which had me in the hospital yesterday getting lung function tests... I am fine though... I also passed out last week... had to do with a compression garment I am wearing. But again, all fine. Luckily my amazing friend Karen caught me.
So now I am 4 weeks post surgery and have had quite a few complications. I had skin issues, which led to an incision opening and this has ultimately landed me back in New Orleans. I had wound surgery Thursday and will have a DIEP flap surgery Tuesday to replace lost tissue and skin.
In addition, my port got infected with a bacteria and I needed emergency surgery to remove the port. And the port, which was stuck, also caused a blood clot, so I am on blood thinners as well.
Ok... another update. In the end, I was in New Orleans from August 17-Sept 2, most of which was spent in the hospital. The DIEP surgery went well, but I needed an escort to fly with me back to New Jersey. Thanks to Irene, that was delayed and I just got home this past Friday.
September 9, 2011… finally on the mend!!
Since this original blog, I had another 5 revisional surgeries, including butt lifts, liposuction, TDap flap, nipple reconstruction, fat injections, which all went well. And then tattooing for the aerola.
