Monday I saw the oncologist for a follow up. He asked what side effects I am experiencing from the Tamoxifen: hot flashes, night sweats, trouble with regulating my heat, and waking up in the night. I am fortunate that my symptoms are not extreme.
Being a high school math teacher in the COVID era is something else. I won’t get into the details other than to say I’m working about 15 hours each weekend. I have more students than I’ve ever had, a new curriculum and many new technology tools that I’m learning.
It is hard to determine if I’m having a hard time sleeping due to the medication or the stress associated with work. Hopefully I’ll be able to find some efficient processes to make the work manageable. I’ve never been this overwhelmed in September. The doctor did say that by now the side effects of Tamoxifen won’t get worse.
Dr. Byrd and I talked about the benefits of taking Tamoxifen versus another aromatase inhibitor, Letrozole or Anastrozole. We also talked about the benefits of taking Tamoxifen for five versus ten years.
Aromatase inhibitors lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow. Aromatase inhibitors include: Anastrozole (Arimidex)
Dr. Byrd told me that I need to be my own watchdog and advocate. I need to keep track of my health and pay attention when things don’t resolve like they should. For example if I get a cough that doesn’t go away or if I have other symptoms that aren’t otherwise explained I should call him to get them checked out. He also told me to do regular exams of my chest, into my armpits, to check for new lumps and bumps.
He wants to see me in six months or sooner if I’m having unusual symptoms.
Also, I’ve been seeing a physical therapist for the past month to improve my arm mobility. I’ve been practicing reaching overhead and doing stretches and exercises to improve my back, shoulder and arm strength. There is still some tightness but I’ve seen so much improvement over the past month that he released me and told me I am clear to do anything I can do without pain. I’m excited to report that I’m ready to start a workout program at home in the garage gym that Chad built during the shutdown.
Predict is a tool that helps show how breast cancer treatments after surgery might improve survival rates. Once details about the patient and their cancer have been entered, the tool will show how different treatments would be expected to improve survival rates up to 15 years after diagnosis. This is based on data from similar women in the past. It is important to note that these treatments have side effects which should also be considered when deciding on a treatment.
When I enter the information associated with my cancer diagnosis, Predict gives me an overall survival rate after 5 years of 96%, 10 years of 90%, and 15 years of 84%.
Predict also tells you the chance of death associated with causes other than breast cancer. When I take that into account the Predict tool tells me there’s a 3% chance I will die in the next 5 years from this cancer, 7% chance over 10 years and 10% chance over 15 years.
This is all encouraging to me. I feel healthy again and capable of great things.
Last week on Wednesday (two days after seeing the oncologist) I walked four miles in the morning with friends. It felt good to get outside and get some sunshine. Once I got home another friend brought over two goats to eat blackberries and weeds in the overgrown chicken yard. It’s been fun to feed them grain and document how fast they can clear the vegetation. They are so cute!
That was a big day with too much activity and about mid-day I noticed there was a spot on the left side under the glue where the incision didn’t look right. I took a picture and sent it to the surgeon’s office. They told me to schedule a follow up appointment but I wasn’t able to get in any sooner than Tuesday, August 11th. I didn’t have a fever so I decided to wait to see if it would get worse. Alternating Tylenol and ibuprofen was helping to keep the pain levels under control. I wasn’t sure if the pain and irritation was due to a slight infection, glue coming loose, or nerve pain. There was also fluid sloshing around under the incision that was probably contributing to the discomfort. A friend made a flax seed filled compress (below) that I can put in the freezer and then lay over my chest at bedtime to help with the nerve pain or use in the car to protect my chest from the seat belt. I also wear an ace bandage over my chest during the day to help with the discomfort.
Over the next couple of days I experienced continued discomfort and irritation. I tried to reduce the Tylenol and ibuprofen and balance activity and rest. I knew the 4 mile walk was too much for me and didn’t walk for the rest of the week. Friday and Saturday night I was in tears. It was a difficult week emotionally and physically. In addition to a cancer diagnosis, recovery from surgery, and the possibility of chemotherapy, my youngest daughter moved out to live with friends and one of my closest co-workers passed away suddenly and unexpectedly.
Saturday night I was awake for a lot of the night but was able to fall back asleep around 5 am and slept until almost noon. Those hours of sleep were such a blessing! On Sunday afternoon Chad and I watered plans in the yard, picked up the house, did a load of laundry or two and had good friends over for dinner. I am so grateful for all the friends I’ve been able to spend time with this summer.
Monday I tried walking 4 miles again. Tylenol, water, and a snack helped me meet the distance goal and I felt better than I had last Wednesday. When I got home I noticed there was some redness around the incision on the left side and again wondered if I had a slight infection.
Tuesday when I saw the doctor she told me to start taking antibiotics for the infection. She gave me a print out with the Oncotype score (11 out of 100). The report showed a 13% risk of distant recurrence over the next 9 years and that the risks associated with chemotherapy outweighed the benefit I would receive from the treatment. Therefore I will skip chemotherapy and begin Tamoxifen. I scheduled a follow up visit with Dr. Lucas for November 12th.
Today Dr. Byrd’s office called to let me know they will call in a prescription for Tamoxifen and I have a follow up visit scheduled with him on September 28th.
Every day I walked farther than the day before. Last Monday the farthest I could walk was to first street and back which was a little less than 1 mile. Yesterday, Chad and I walked to the post office and back which was about 3 miles and I could have walked farther if I wanted to. Going on walks again and spending time outside and with friends has helped to improve my mood and to keep my spirits up.
In the past week, I read one of the books my sister gave me, visited with friends, drove the car for the first time, and looked at properties for sale. (This is a favorite past time of mine – we aren’t moving.) I didn’t read cancer websites or spend time worrying about the next step. Having people around has helped me keep my mind on the present and not what will happen next week, next month, or in the next few years.
Chad is back to working a lot of hours. Fortunately he has an office in the shop and has been able to work from home. The kids seem to be doing well but I know they are concerned about what the impacts of a cancer diagnosis will be in the short and long term.
Today when I met with the oncologist he reviewed my pathology report and answered my questions. Unfortunately he did not have the results of the Oncotype Test but said he will call me when the results are available. He said he would confer with the radiation oncologist to verify that I do not need radiation. He said I will not have a PET scan because it is unlikely that I have a mass big enough to show up. He did not order blood work or other tests today.
He recommended that I eat a healthy diet and stay thin. Limit alcohol. No black cohosh, soy, flax seed extract, ginseng, red clover, or phytoestrogens. Natural remedies that people take to help with menopausal symptoms should be avoided. Nutrition is an area I need to research because there is some conflicting information about phytoestrogens and cancer recurrence. The doctor said mentioning this topic at an oncology conference is a good way to get the doctors going 🙂 The surgeon and the oncologist agree that moderation is the key.
He does not think I will need radiation or chemotherapy and the next step will be tamoxifen. If I need chemotherapy it will either be TC or dose dense AC-T and that I will need to have a port put in. If I have chemotherapy and tolerate the drugs I can expect the duration to be around 20 weeks.
I do not have another appointment scheduled with the oncologist but I am scheduled to see the surgeon on Tuesday, August 11, 2020.
Saturday, July 25, 2020
Genetic Testing came back normal. This cancer was not caused by a genetic mutation.
Drains are a pain, literally. Each day the drain output was less and I was finally able to have them removed on Friday. People told me it wasn’t painful to have them removed, just uncomfortable. It was true in my case. The doctor snipped the stitch holding the drain in place and they pulled right out. On the right side I didn’t feel it come out at all and on the left side I only felt it a little bit toward the center of my chest. This makes me wonder if I’ve lost the feeling in those spots for good or if the sensation in those areas will come back over time. The doctor said I will have increased swelling over the next couple of days and can use an ace wrap and ice to help with that when needed. I am so happy to have the drains out!
I’ve already noticed an increase in arm mobility and now I can begin targeted movements to increase my range of motion. The doctor said I can workout as much as I can tolerate with unlimited leg movements and modified upper body movements. I’d really like to be able to reach a glass on the top shelf of the cabinet by the end of the week! This cancer is estrogen positive and one of the main places your body produces estrogen is in fat. It will be important for me to eat a healthy diet of fruits and vegetables and get regular exercise.
On Monday, August 3rd I will see the oncologist to get the results of the Oncotype Test and find out if I will need chemotherapy. My next follow up with Dr. Lucas (surgeon) will be Tuesday, August 11th.
Chad’s mom, Charlene, and my mom, Kaye, have been here to help me. A friend stopped by on Wednesday morning and gave me a pedicure. Other friends brought over a quilt they made. Another friend brought a gift bag. My sister, Rachel, sent a cute pineapple bag full of goodies. Many people brought food. I am so grateful for your prayers, love and support.
Chad and I met with Dr. Lucas today. She said the drains and incisions look good and are working properly. The drains are really annoying and hang from tubes that come out below the incisions. It really limits my wardrobe choices and movement. I either pin them to my undershirt or wear a garment with pockets to put the bulbs in. The drains will come out when there is 30 ml or less per day for two consecutive days.
The pathology report showed the left breast had Lobular Carcinoma In Situ and Atypical Lobular Hyperplasia. There was no evidence of Invasive Carcinoma. The right breast had three areas of Invasive Lobular Carcinoma with the largest one measuring 1.5 cm. Of the two sentinel nodes removed one was negative and one was positive for micrometastases measuring 1.1 mm. The pathologic stage is determined as pT1c and pN1mi. The doctor said this is stage 1.
Dr. Lucas will order an Oncotype Test and refer me to the medical oncologist for further treatment. She said I will not have another surgery at this time.
The results of the genetic testing should be back by the end of this week or beginning of next week.
I left her office and sat in the car and cried. While there was some good news I was sad about the positive lymph node.
What will my life look like over the next few months in treatment? What do I want my life after treatment to look like? Will the cancer come back? Can I still live to be 95 years old like my grandmothers? Every day we get to make decisions about how we want our lives to go. I never expected to be living with cancer and making treatment decisions for myself. I am grateful that I am not doing this alone. I am loved and supported by so many people. Thank you.
The past few days I’ve spent sitting in the recliner with ice packs and taking medication to help with swelling and pain. One day we watched an HGTV marathon of the show Good Bones. This got me excited about an upcoming kitchen remodel at one of our rental houses. Chad and his mom went to Lowe’s on Saturday to finalize some of the design choices. It’s going to look really nice!
The weather has been warm which has given me an opportunity to sit out on the back porch in the swing Chad and Steve hung up for me. I only wish we had a couple of these so I wouldn’t feel guilty hogging the only swing on the back porch.
I finally mustered up the energy to take a shower. It was nerve racking to see myself in the mirror and wonder what happened to me. The scars go from the middle of my chest to way under my armpits and are longer than I anticipated they would be. Before the procedure I saw some images on the internet but I figured that every woman is different and my chest would not look like anyone else’s once the healing is over. The nurses at the hospital said the incisions look good but it does remind me of two large zippers running across my chest with another small zipper in my right armpit. Before the surgery I spoke with a lot of women over the phone about their experiences. The time they spent with me telling their stories and answering my questions was truly a gift. I will not name names and I am grateful to them all.
At night my brain shifts into high gear thinking about all the what if’s. There is a list of things I should have or could have done differently and another list of possible paths from this point forward. As a planner it’s hard not to think about what my life might look like next week, next month or next year. Each night I am able to get more and better sleep. Saturday night I went to sleep around 9 pm and woke up at 12:30 and 3:30 am but didn’t get up for good until about 8:45 am. Sunday I was in a much better mood and had more energy. Sunday night I went to bed around 11:30 pm and got up around 8:30 am. I am grateful for the new recliner which is comfortable to sleep in, ice packs, and pain medication.
Monday morning after a late breakfast I went outside and helped my mother-in-law water the plants. We talked about flowers, plants and trees and the grape harvest that is to come this fall. The three very old concord grape plants in our yard produce a bumper crop each year and I want to make grape juice with the new steam juicer I bought this spring. It was a beautiful, sunny day and the flowers really helped brighten my outlook.
Tomorrow (Tuesday, July 21, 2020) I will see Dr. Lucas for the first post-surgery follow up. Please pray for pathology reports that show no cancer in the lymph nodes, no spreading, no need for additional surgeries.
Wednesday, July 15, 2020 be at Centralia Providence at 7:00 am
We set an alarm for 6 am so I could get up and take a shower before heading the hospital. They gave me a special soap with instructions about how to wash to help minimize the risk of infections. I also didn’t have extra time to think about eating or having my normal cup of morning coffee.
Chad was only allowed to walk me to the door. It was hard on him to leave me there. However, I walked through the ER doors and went directly to the outpatient surgery waiting room. It wasn’t long before the nurse came to get me.
The nurse helped me prepare for surgery. I got to have a pregnancy test (negative), brush my teeth with a special wash, coated the inside of my nose with iodine, washed my by body again with large wipes. Once I changed into the hospital gown I was put in bed with music of my choice and the lights dimmed. The nurse put an IV in my right arm and someone from nuclear medicine came in to inject the dye in two places to help identify the sentinel nodes the doctor would remove during surgery. They kept asking me if I have been anxious or depressed and I had to admit that I had been feeling anxious about my diagnosis and the upcoming surgery. There are so many unknowns.
There was a woman named Teresa who came in to talk to me and pray with me before surgery. I appreciated her calm, comforting presence and prayer. The surgeon came in to review the surgery with me and answer any questions I may have had. The nurse wheeled me down the hall on the hospital bed toward the operating room as I waved to the people I passed with the princess wave. Unfortunately I did not bring my crown. Once in the OR I moved over from the hospital bed to the surgery table. They strapped my arms down, put a belt around me to keep me on the table. Then the anesthesiologist put the mask on my nose and mouth and told me to breath normally. He said it was just oxygen. It was easy to breath in but hard to breath out. I kept saying ‘out’ and he asked ‘ouch’? I shook my head no. It wasn’t long before I noticed it wasn’t just oxygen anymore. I was out.
In the recovery room I remember talking to one nurse but I have no idea what we talked about. It wasn’t long before they moved me to the surgical floor. Once there my blood pressure, heart rate, and oxygen saturation looked good and I decided it was time to go to the bathroom. I sat up and waited, I took steps toward the bathroom, reached for the bathroom light and the nurse asked if I leaned backwards a bit. I said I didn’t think so. I sat down on the toilet and then told her I was feeling lightheaded. Next thing I knew there were a team of people around asking me to wake up and make eye contact. I told them that I had been dreaming and there were a lot of people in my dream. The team got me into a wheelchair and wheeled me back to the bed where I stepped up to get back to bed. I did not want them lifting me under my armpits because of the surgery incisions.
Once in bed they hooked me up to the monitors which showed a very low blood pressure. They did an EKG to check on my heart , put in another IV on the left side, and gave me two bags of fluids with potassium. The lowest blood pressure reading was 78/55 – yikes! The nurse said I was the excitement for the day. Not sure how I feel about being the ‘excitement’ but I sure was glad to have a group of people there to take care of me at that low point.
There was a full menu of food to order from and they told me I could order whatever I wanted any time between 7 am and 7 pm. My meal consisted of chicken strips, small vegetable tray, plain Greek yogurt, peaches, coffee, Gatorade and chocolate cake. It took be about 4 hours to eat the food which tasted better as time went on.
During the night I slept in spurts for a total of about 7 hours. There was no more excitement for me thank goodness. The next morning I ordered eggs, bacon, mandarin oranges, coffee and a bran muffin. Breakfast tasted good and went down easily – no nausea or upset stomach.
For lunch I had a Caesar Salad with chicken, cheesecake, and Gatorade. It seems like a weird combination of food but everyone was raving about the cheesecake, how could I pass it up?
Dr. Lucas came in to check on me, answer my questions (of course), and fill out the discharge papers. She said she took 2 nodes and should have the pathology report back when I see her on Tuesday, July 21st. This will help her determine what the next steps will be. On one hand I don’t want to do radiation, chemo, or have another surgery. On the other hand I want to be cancer free and live a long life. Please pray for no cancer in the nodes and wisdom in making treatment decisions.
Chad picked me up from the hospital around 1:30 pm and took me home. He had a hard time dropping me off and just waiting for a call. He told me he wanted to be with me as I recovered. However, I am glad he wasn’t there to see me pass out and watch helplessly as they brought me back. The nurse was especially happy when my lips were pink again.
Once I got home we put together a medication schedule and checked out the drains to make a plan for those. I set a goal to walk around the house as much as possible to help my recovery. (We are not talking marathons – don’t you worry.) When Gretchen brought over the dinner (which was amazing BTW) I think she was a little mortified that I was up walking around. It was really good to see her so I’m glad I was up and moving around at that time.
Gretchen’s Dinner – YUM!
Charlene (Chad’s mom) and Bob came up to help as well. Charlene helped with the medication schedule, drains and lots of other things while Bob mowed the lawn. Mowing the lawn is a big job and it’s typically my chore so it was nice to see him doing that.
I was so happy to see Lizzie, Parker and Sheila on Thursday evening. They left Thursday after Parker got off work to go to Sunriver in Oregon to spend time with my family. I was jealous that I didn’t get to go but was glad the kids went.
Glad to be home
I’m sure the full reality of a bilateral mastectomy has not hit me yet. There is no way I can know all the ways this will change my life. Adjustments will need to be made. I ask for prayer that we can learn to live well and lead balanced lives keeping our focus on what’s important.
December 2019 – Mammogram showed dense breast tissue with a spot of calcifications
January 2020 – Second mammogram to magnify the calcifications. They told me I may need to stay for an ultrasound but the radiologist told me I did not need one.
March 2020 – Biopsy of the calcifications came back as Multifocal lobular intraepithelial neoplasia. This is NOT CANCER but puts me at a higher risk for cancer. Later (reading internet research) I learned that 12% of patients with this diagnosis have cancer. The OB/GYN referred me to a surgeon for a surgical biopsy.
The surgeon’s office called to say they got my referral but they were not seeing patients at that time because of the coronavirus shut down in Washington State.
May 2020 – Chad and I met with the surgeon and scheduled a surgical biopsy. Two days before surgery I went to have a coronavirus test and was told that the surgical facility had a malfunction with it’s sterilization equipment and they wouldn’t be able to do surgery. They told me to contact my provider. When I called the surgeon and my OB/GYN they said they thought I the surgery would be scheduled for the next week. The surgeon’s office called the next week saying the issue was still not fixed and offered for me to travel to Shelton for surgery or get a referral. I opted to see someone else.
June 1, 2020 – I met with another surgeon, Dr. Lucas, at Centralia General Surgery, for a second opinion. She referred me for an MRI.
In preparation for the MRI I talked to people who had been through the experience and found videos on YouTube. The best videos were made to help kids prepare for the test. There was a small wooden MRI machine and a Ken doll with a kind woman explaining the process. A different 30 minute video was really just a sound track of MRI noises which was extremely helpful. I practiced by laying on the floor on my stomach with my arms extended in front of me and a blanket over me. I would play the MRI sounds on the phone next to me for as long as I could stand to lay still. Mental preparation was so important. I would think about myself as a bunny hiding in a hole (Ted – Sheila’s bunny was nearby) or Superman flying around surveying the world (think – 1978 Christopher Reeve). The different noises would also lead me to thinking about construction sites, jack hammers, etc.
Mental preparation and a winning attitude is critical in so many settings. In the past few years I worked out at the Crossfit gym in Centralia and I would hear the athletes around me talk about how important their thoughts and attitudes were to meeting their goals. Students with a growth mindset learn from their mistakes and tackle ever more challenging problems. When I fly in an airplane I sing (in my head – not out loud) about the how great God is which helps curb my anxiety.
June 11, 2020 – MRI date. I was feeling anxious about going into the big, loud tube. The technician was very kind and friendly making me feel at ease. She got the IV put in and situated me on the table. The worst anxiety was between the time she put me in the tube and when she started the test. She left the room and then the music (headphones) started and the MRI machine noises started. Those noises were oddly comforting. I spent a lot of time counting to pass the time while in the machine #mathteacher. I didn’t have any adverse side effects and was able to drive myself home.
June 14, 2020 – We had a small gathering of people over to celebrate Sheila’s high school graduation. Chad started to feel ill so he went to bed. He didn’t feel better the next day and was able to get an appointment with his doctor for the 16th. I decided to sleep in the boy’s room for the week. My anxiety increased as the week went on. I woke up in the night a lot feeling like my boob hurt, my arm hurt, I had stage IV breast cancer, etc.
June 16, 2020 – I saw Dr. Lucas to follow up and get the MRI results which showed another suspicious spot near the first biopsy spot. She ordered another biopsy. Waiting is the most difficult part of this whole process. It took two days for me to get a call from the facility to schedule the biopsy – another 10 day wait.
June 18, 2020 – Chad got a coronavirus test. He was staying in our bedroom at night and going out the sliding door to the shop to work and use the shower. Fortunately the shop remodel was finished only a few weeks before.
June 22, 2020 – Monday morning the results came back and Chad’s test was negative. What a relief! I put a call in to my doctor to schedule the biopsy follow up and they told me July 6th – more waiting. I started crying, there had been too much anxiety. The receptionist said she’d have the nurse call me back. When I spoke with the nurse I told her about the ache in my breast and my concerns. She scheduled a time for me to see the doctor the next day.
June 23, 2020 – Dr. Lucas spent time talking with me about my concerns. She examined me and said she didn’t notice anything different from the last time I’d been there. She assured me that I do not have stage IV breast cancer. It is SO HARD to wait.
Waiting is terrible. I texted a friend about rafting and we decided to make a plan for a mini vacation. A rafting and zip-line tour was scheduled for the following week. Having something to look forward to provided so much mental relief.
June 26, 2020 – Ultrasound guided biopsy – The technician found the spot right away and we were ready for the radiologist to come in and do the biopsy. Then he asked her to go back and check the nodes. Nothing was evident there (whew!). The radiologist was very friendly and had a calming presence. Once the procedure was done he said it looked as though this was confined to my breast and had not spread to the nodes.
June 29, 2020 – Zip Line Tour
June 30, 2020 – White River Rafting with Zoller’s Outdoor Odyssey (Highly Recommend)
Spent two nights in an AirBnB with my friend Leslie. We had a great time.
Surgical options 1) lumpectomy with radiation 2) single mastectomy 3) double mastectomy – with or without reconstruction
Wow, a lot to think about. Of course I talked to everyone I could who had any personal experience with breast cancer, breast surgery, and reconstruction. I read ALL the internet sites and research articles I could find. While it was anxiety producing I also learned SO MUCH! The doctor told me that both surgical options have the same 5 year survival rate but the lumpectomy has an 8% recurrence rate and the mastectomy has a 1% recurrence rate. One article I read said there was a 30% chance I would have cancer in the other breast. I DO NOT LIKE ANY OF THESE OPTIONS!
July 9, 2020 – Chad and I met with Dr. Lucas to schedule a double mastectomy for the following Wednesday. I was planning to go to Sunriver with my family and come home the day before surgery. However, in the COVID era you need to get a coronavirus test two days before surgery. Sunriver was not going to happen 😦
Also, I met with a provider for genetic testing via Zoom. We discussed my family history and I went to the local oncology office for a blood draw. The results will be back in two weeks. It’s amazing what you find out when you start talking to your relatives. I thought the only cancer was my paternal grandparents and maternal grandfather but I discovered that other relatives had experiences with cancer as well.
June 13, 2020 – COVID Testing at Providence Urgent Care Hawks Prairie – They call the next day with your results. It was one swab up one nostril. It burned a little but wasn’t too bad. Fortunately, I am not sick and do not have a stuffed up nose.
Carolyn’s Life 