The first week of October was the week of my “Apple” lesson plan. So Sunday night, after a cookout with Earle’s office friends, I made play dough! I have to admit that kneading and playing with the dough was very therapeutic!! On Monday, I had a full day with the kids and I had fun watching them play with the play dough and teaching them apple songs. I also got the results of my biopsies. Good news!!! No cancer on the right side, but there were precancerous cells found on the left. On Tuesday, I was only in the classroom for an hour or so because I had to go to Occupational Health since my year anniversary was coming on the 11th. I didn’t need to do the hearing exam once I told her that I had breast cancer and was going to be out of the classroom for awhile. She was very supportive.
I left Occupational Health and went home to meet Earle to go to the hospital to take care of the paper work for my port surgery on Wednesday. We headed over to Calvert Memorial Hospital and checked in for my pre-op. We got a buzzer like at a restaurant!! We didn’t have to wait too long. I answered a lot of health questions and filled out paperwork. I met some of the nurses and they explained what would happen the next day. Seemed so strange to think I would have something placed inside my body!!! But I am sure it will be better than not having one once chemo starts.
After that, we went to our appointment with Dr. N., the Breast Surgeon, to go over the results of my biopsies and hear the recommendations of the Tumor Board. He said that because of the small invasive ductal carcinoma and the larger area of precancerous cells on my left breast it would be hard to conserve the breast. I told him to stop right there because we had already decided to have a mastectomy on the left breast for sure. I also told him that we were pretty sure, based on my cancer being Triple Negative, that I would have a bilateral mastectomy. He said that for my peace of mind that would probably be a good idea. Since I will always have “lumpy” breasts, I would probably have numerous mammograms and probably biopsies on the right breast to keep making sure there was no cancer there in the future. After last week I had had enough of that!! I also heard new stories of women that survived breast cancer on one side and then had to battle again on the other. From my brother-in-law’s Mother, to a lady I met in the oncologist office, to a woman I met last night! He also said it is much easier to get great results from reconstruction when done at the same time. Good news too!!! No more mammograms!
The Tumor Board confirmed that I should have my chemo treatment prior to surgery. It is hoped that the cancer will be gone by the time the chemo is done from my breast and the lymph node. They disagree on what will happen next. Dr. N. wants to just test the sentinel nodes and see if there is any cancer found. If not he would just remove those 3. He said that this is what the are doing now in the big cancer hospitals. The normal protocol for lymph nodes is to remove all of them if there was ever any cancer found there – a full axillary dissection. There is a 30% chance of getting something called lymphedema if he does this surgery. I am hoping that when they do the biopsy they find nothing and all agree to just have him take the sentinel nodes!!! As he said, since we are doing the chemo first, we have time to decide if I want to go ahead with a bilateral mastectomy. Time to set up an appointment with the plastic surgeon so that he can explain the reconstruction options.
Wednesday morning came too quickly! We had to be at the hospital at 8:30 am for my 10:10 surgery. They took Earle and me back and I got undressed. and in my gown. The nurse set up my IV and gave me something to relax me. She was very sweet and whispered to me that she had breast cancer 3 years ago and I would be fine. She said that the people at the Infusion Center were really nice. I got all settled and had to keep telling everyone who I was and my birth date. When Dr. B. came in, he asked me what he was doing that day and I was a little confused!!! I was just supposed to be confirming what he was doing – placing a portacath on the right side of my upper chest. They put me into a twilight sleep but I didn’t remember anything!!! All in all, it was a pleasant experience. I had to wait two days to take a shower and then I could remove the top bandage. The steri strip would fall off on it’s own. I had to wait 14 days!!! to take a bath though!!! Reading in the bathtub can be so comforting for me. 😦 Oh well! I had a lot of bruising, but the local anesthetic lasted a while and then tylenol helped with any soreness.
I went back to work on Thursday afternoon. On my way there, I stopped in at Human Resources and told them about my diagnoses. She gave me the paperwork that my doctor needed to fill out to explain what types of duties I couldn’t do during treatment – be around young children. She also gave me the form to go on Family Medical Leave if/when I need to. She relieved my fears about health insurance by telling me that I will still pay the same amount per pay period. I just need to give them checks for payment since there wouldn’t be pay for it to be taken out of – the government will still pay their much larger portion! Whew!!!
I worked again Friday Morning. I was happy to be able to participate in our apple tasting party!!! Then I had to head home again to see Dr. P., the oncologist. She explained more about the kind of medicines I would have for chemotherapy and the kinds of side effects I might have. She also filled out the paperwork I needed for work. She stated that I needed to be away from the Child Development Centers during chemo to minimize my exposure to germs. We also talked about the possibility of my cancer being gone prior to surgery and the discussion the Tumor Board was having about not doing a axillary dissection if no cancer could be found in the sentinel lymph nodes. I guess we will wait and see. She said that I will start chemo either Thursday, October 11 or the one after that depending on the schedule. Here we go!!
We also got some good news – I don’t have the genetic marker for cancer!!! One less thing to worry about!
I went back to work for 1 full day and then on Tuesday, September 25th I returned once again to the Center for Breast Care. This time I would have 3 biopsies – 2 on the left and 1 on the right. I had to leave Earle in the main waiting area during the biopsies – only women are allowed in that part of the radiology center. I was surprised to see that Dr. K wasn’t there that day. The new Radiologist was pleasant and understanding but I would have been comforted to have a familiar Doc. The nurses and techs were the same at least and Linda made sure to check on me between biopsies. The guided ultrasound needle biopsies weren’t too bad, but the Stereotactic Core Biopsy was really uncomfortable. I had to lay face down on the table and it hurt my neck – a lot. The Doc comes from underneath to get the biopsy. It is very strange and a little scary. They numb the affected area so the actual biopsy doesn’t hurt that much – but the noise is a little unnerving. I just kept saying Hail Marys and praying that it would end soon. When they do biopsies they put a tiny metal tag or clip to mark the site so that it can be found by radiology technicians on future mammograms. After the biopsies, I had one final mammogram to show the placement of the clips. The technician said, “Your poor boobies!” when she saw how bruised and battered I was.
I got dressed and went out to meet Earle. We were starving so we went to our new favorite restaurant – Panera Bread. We enjoyed soup and salad and a fruit smoothie – yum! We decided to check out our local health food store to look for ingredients from our new cookbook – like agave, flax seed oil, local honey, sea salt etc. Later we were able to find most everything but the flax seed oil and the honey at Giant. We also headed to a local farm store and bought local apples and hormone-free, antibiotic- free beef. The local anesthetic was starting to wear off so we headed home so that I could start icing!!!
I went back to work for a few more days -I enjoyed being with the kids and tried to catch up on paperwork and worked on next week’s lesson plan. I tried not to worry too much about the pending test results. The radiologist said not to expect the results until Friday at the earliest. My sister in-law, Debbie, sent me a few books that were helpful to her during her battle with breast cancer earlier – “Dr. Susan Love’s Breast Book”, “The Breast Cancer Prevention and Recovery Diet” and “Dear God, They Say It’s Cancer”. Occasionally I would pick one up and read some of it or surf the internet for info – but then I would worry about what I read and avoid “cancer” for a while – we still didn’t have enough information yet to make any decisions anyway. I grew tired of what ifs.
Friday September 28th, Earle and I met with Dr. B., the surgeon that would place the port for my chemo. He was very nice – even if he did go to Duke! He explained to us the procedure for placing the port and where it would be placed and how it would be used. Then he shocked us both by telling us that my port surgery was scheduled for next Wednesday! We weren’t prepared for that at all – everything was becoming too real, too fast!!! I panicked. I wasn’t quite ready. We weren’t supposed to meet with the oncologist until the 5th and I was sure we weren’t going to start anything until after my birthday on the 8th!!! We went to Dr. P’s office and even though her waiting room was full, her nurse and nurse practitioner could tell we were upset. They sat down with us and explained things we were confused about and allayed my fears that everything was moving too fast. Everyone said that having the port placed well before the first chemo treatment would give it a chance to heal. My sister-in-law had her port placed the same day as her first treatment – she felt it was too much for one day. Resigned we went back to Dr. B’s office and got the paper work for the surgery. The first week of October was going to be very busy indeed!!
On Friday, September 21st, Earle and I packed up the Escape and hit the road for our weekend getaway to the Seven Springs area. Hard to believe that when Earle ordered the tickets for this year’s Mother Earth News’ Fair breast cancer wasn’t even on our radar. We tried to relax and forget about our problems for a while, but it proved almost impossible. Even eating became a problem. Earle had started to research the causes and/or preventions of cancer, so eating had become an adventure. One thing we could try to control in a situation out of our control. We stopped at Boston Market and made sure we ordered lots of veggies for our sides. We had regular soda – not diet. (Baby steps!) We made it to our Bed and Breakfast (Ligonier Country Inn) pretty late. It was lovely, but we were surprised to find that we had worse internet than we do at the farm! Even our iphones didn’t really work. Oh well – at least it kept us from googling more about breast cancer! I was mostly surprised by the fact that one minute I would be fine and the next I would begin to cry. I was so grateful to have the strong, loving arms of my husband wrapped around me when this happened. I can’t even imagine going through this alone. Women have to be truly strong to do this on their own.
We woke up relatively early on Saturday to get over to the Fair. We didn’t want to miss too much. We got there in plenty of time to walk around before the first workshop we wanted to attend – “Alpacas 101”. We then headed over to see Pat Foreman, “The Chicken Whisperer”, give a talk on “Gardening with Chickens”. I really enjoyed seeing her last year. Some of what we heard was repeats and Earle got bored and headed out to wander. But I stayed to absorb what I could about chickens and a little more about nutrient rich soil and eating healthy. I went on to see her next workshop – “Discovering the Chicken You Never Knew.” while Earle went to a talk on “Practical Pond Management”. (I know you all think we are very weird at this point – but I can now have my chickens eat out of my hand and turn them upside down to calm them down!!) We joined up again to see “Turkeys Aren’t Chickens; The Basics of Keeping Turkeys”.
Then we went to the workshop which set us on a new healthy eating path – Janet McKee’s workshop, “The Delicious Power of Food to Heal”. She talked about the importance of eating lots of fruits and vegetables, whole grains and little meat. Organic and hormone-free was very important. She told her own story of her health issues in her 20’s and how food healed her when medicine failed her. She also told stories of her father and other clients that were cured of diabetes by eating this way. Janet is also a local representative of “The Cancer Project” and told stories of people thriving after a cancer diagnoses. She said that if your Great-Grandmother wouldn’t recognize it as food – it wasn’t food – including sodas and artificial sweeteners. We sampled one of her green smoothies and bought her book, “Fabulous Recipes for Vibrant Health.” We couldn’t quite get behind the idea of not eating meat or eggs – but everything else sounded like it would help and wouldn’t harm us. We went back to the Bed and Breakfast and tried to order food that would be “healthy”. I stuck to ice tea with real sugar this time!
The next day we headed back to the Fair. This time I test drove Ford’s newest hybrid the C-Max. It was really nice – might be my next car. We also bought some garlic and some heirloom seeds, watched a solar cooker bake bread, bought some chicken treats, learned about Garden Soxx and chatted with a lady about spinning alpaca fleece. We decided to hit the road early and enjoyed the beautiful scenery in Pennsylvania, West Virginia and Maryland on the way home. It was starting to look like Fall. On the way home I read a post my friend Jean put on Facebook about the dangers of soda. I read it out loud to Earle and we decided then and there to stop drinking soda from now on…a huge commitment. I used to drink at least one 20 oz Diet Cherry Dr. Pepper a day and Earle drank untold amounts of diet soda. I have not had any soda since that day (except a little ginger ale added to fruit juice one day.) It is not as hard as I thought it would be.
Today we are drinking lots of juice and green teas. Earle makes me green smoothies most nights, buys tons of fresh vegetables and fruit, shops in the organic aisle and at the local farm stand, cooks me fabulous meals and makes sure I take my vitamins and flax seed oil pills. I should be really healthy! Now we just need to wean us off sugar and other natural sweeteners….like I said, baby steps!
We survived telling the children the “news” and kept moving forward. It was nice to spend some time with the kids doing normal things….seeing our son and his bride’s first apartment and helping them furnish it with furniture that belonged to my Great-Grandparents, visiting my 94-year-old Grandmother, shopping at Target and enjoying a road trip with my family.
The Nurse Navigator called to say that the team decided that they needed more info before they met to discuss my case. The breast MRI showed 3 areas of concern – so more biopsies were needed. Two on the left and one on the right. I had to wait until September 25th for the biopsies because the Johns Hopkins Radiologists were only at CMH on Tuesdays. Meanwhile, I was back in the classroom and grateful that I would forget about my problems for stretches of time while teaching and playing with my 4-year-old class.
On September 20 we met Dr. P. ,the Medical Oncologist. While we were waiting for Dr. P. I picked up a copy of Good Housekeeping magazine that had an article about Robin Roberts’ experience with breast cancer. I was interested to see that she was also Triple-Negative and then I remembered that she was currently in the News – she needed a bone-marrow transplant! One minute I was reading an uplifting story about surviving breast cancer and the next minute I was realizing that happy endings aren’t guaranteed. Then Dr. P came in -she was cheerful and upbeat and excited to see that we had the same birthday. She said that she thought it would be good luck.
Dr. P. said that she thought I was a good candidate for neoadjuvant chemotherapy. She also suggested genetic testing to make sure that I didn’t have the BRAC 1 or BRAC 2 gene for cancer. If I did, they would definitely recommend a bilateral mastectomy and also removal of my ovaries because there would be a higher risk of ovarian cancer also. She also scheduled me for a echo cardiogram to make sure my heart was strong enough to take chemo. Both tests were scheduled for the next afternoon.
Then she dropped a bomb-shell. She told me that because my immunity would be low during chemo, I shouldn’t be in the classroom with young children! I had planned to work less – maybe half-days – but not at all?!!! To top it all off, for the first time in our lives I was the one with health insurance! I loved this group of kids…they were so sweet. I started to cry. That was truly the hardest part. I kept hearing about people working through chemo and I just assumed I would too. I hated having to tell my Director that I needed to be gone for months at a time. I was devastated.
Friday September 21st was a busy day. First I had to meet with my Director to tell him that at I needed to be away from the classroom during chemo. He was very calm and compassionate – but not overly sympathetic – so that I was able to tell him without really breaking down. He said for me to find out from Dr. P. what I could do during chemo so that he could find a placement for me somewhere else in our organization for me to work. He also gave me the paper work for Medical Leave and talked about the possibility of co-workers donating leave. Then I taught for three hours and tried to put everything out of my mind for a while. That afternoon I met with the genetic counselor at Dr. P’s office. The blood test was simple, but would take a week to 10 days for the results. She was pretty sure that the insurance company would cover the cost of the test -$4000.00!!! based on my criteria. Yikes! After that Earle and I met with the Cardiologist, Dr. M. The worst part there was waiting for the doctor! I had the echo cardiogram and my heart was strong and healthy. So at least that was good news….
Earle and I had already planned to go away for the weekend to Seven Springs, PA for the Mother Earth News’ Fair. So we went home, packed up and hit the road. Hopefully we would have a relaxing weekend away from all our worries.
I made it home and went right past Doug into my bedroom and laid down on my bed. I was numb. I tried to read as I waited for Earle to get home. I knew he would be surprised to see that I made it home before him. I heard his motorcycle drive up to the house and my stomach dropped. I hated having to tell him the news. Cancer had already taken his oldest sister much too young. But there was hope too – two of my sister-in-laws had fought breast cancer and won. He came cautiously into the room. I sat up and he knew right away that I had heard from the doctor. I told him what I had found out and that I had an appointment the next day with the surgeon. I began crying again once I had his strong, comforting arms around me. He said that we would beat this together and that he would take care of me and love me through it. (We saw Martina McBride sing her song live before it came out on the radio the summer before.) The rest of the evening passed by in a blur. Not sure how we made it through the night.
The next morning we drove the few short miles to the Center for Breast Care and met with Dr. N. and Linda, the Nurse Navigator. We both liked Dr. N. – he was a former Navy Surgeon at Bethesda’s Breast Care Center for Excellence. He was very optimistic spoke of breast conservation options They explained how they work together with a team of doctors – the Radiologist, the Breast Surgeon, the Medical Oncologist, the Radiation Oncologist and the Plastic Surgeon. They all gather together and look at all of my test results in a Tumor Board and come up with treatment options that will give me the best chance to survive without a recurrence of cancer. They stressed over and over again that every person and every cancer is individual. They also stressed that my wishes and worries would be taken into account. Dr. N. suggested that because my cancer tumor was very small (.65 cm), but had already spread to at least one lymph node and was Triple-Negative – not responsive to Estrogen or Progesterone Hormone Therapy and negative for the Her2 protein which makes tumors grow faster, that I would be a good candidate for neoadjuvant chemotherapy. That means that chemotherapy would happen before surgery. Triple-Negative breast cancer responds well to chemo and he expected that the tumor would be gone and hopefully the cancer gone from my lymph nodes before surgery. He said that he thought we needed more info before the Tumor Board met on Tuesday. They arranged for me to have a breast MRI that morning to see if there were any more areas of concern.
It was very uncomfortable in the MRI – I had to lay face down and my head and neck hurt a little bit. It took about 45 minutes and was very noisy at times even though I had head phones on. I prayed some and then started to recite children’s books in my head to pass the time -“Big A, little a. What begins with A? Aunt Annie’s alligator A,a,a.” I survived the breast MRI and Earle and I went over to Panera for lunch – shell-shocked. So much info to absorb. While we were there the Radiation Oncologist’s office called and said that we could meet with Dr. S. that afternoon. We drove down to Charlotte Hall and met with her. She explained all about radiation therapy and when it would be needed. Radiation therapy would take place after chemo and surgery – especially if I only had a lumpectomy. I would have to go every day for 6 weeks – yikes! I was worried about that since Charlotte Hall is so far from Ft. Meade. She said that she had a colleague in Bowie that I could use if radiation therapy ended up being part of my treatment plan.
We left there and went to the Tractor Supply Store (Hey we were in the area!) and the Waldorf Mall for some retail therapy. Then Earle took me to one of our favorite restaurants from when we lived in California – Mimi’s Cafe. I started to field calls from concerned family and friends that knew what was going on with me. We still had to tell our children the scary news. I wanted to be able to tell them all at the same time and in person if possible. So we hatched a plan to get most of them together on Sunday, September 16th.
Before the Shock – we were so happy and relaxed just a few short months ago!