That is what I asked Dr. Wonderful (Hematologist-Oncologist) this week. I had my 6 month visit.
Usually, it goes well but this time when I asked her if everything was okay she said, “I don’t know.” The next 24 hours are a blur. She ordered an ultrasound but the Women’s Center made me get a mammogram, too. Mammograms are so painful for me.
The time leading up to the ultrasound seemed like weeks even though it was only 24 hours.
My initial reaction to everything sent me right back to where I was 6 years ago. I was so upset. I had a few minutes where the doubt began to creep in my mind. When I came home I told my husband about the ultrasound. Also, I told him that if I needed a biopsy that I was going to cancel….STOP RIGHT THERE…
Then I said, “NO…I’m not going to cancel anything. If I need to fight this battle again, I will not change my schedule.” He encouraged me that it was going to be okay.
While waiting for the appointment, I prayed, spent some time with my grandchildren, and listened to praise and worship music.
Kelsey apologized for the 6 year survivor flowers on the counter that were waiting for me when I came home from the appointment. I told her that we will celebrate the 6 year survival until we know different. That is the first time I had flowers waiting after a doctors appointment. It was so thoughtful of Kelsey and Josh and made me feel so awesome.
Is everything okay? I am thankful to report…YES, Yes it is. I was reminded this week of just how precious life is…just how undeserving I am to have this second chance…just how blessed I am by a supportive husband and daughters…just how blessed I am by my three grandchildren…and the promise in Joel 2:25…”God can restore what is broken…”
Life after treatment is all about being a survivor. Just recently I was able to embrace being a survivor. I guess it was easier to pretend things didn’t happen but I’m reminded every day when I look in the mirror. I have 11 physical scars that I have learned to embrace. My scars do not define me but I have used them to refine me. Almost every day I am asked, ” How did you do it?” The honest answer to that is…I have a strong faith in God and I refused to become a victim. Does that mean I was never sad or never had a bad day? Oh no! I had my moments but then I focused my attention on the fact that I was still standing. My girls were at pivotal transitions in their lives and I was at an important place in my career. I had goals to attain and I certainly wasn’t going to let cancer keep me from achieving my goals.
Even today, there are difficult moments. One is during the week before my mammogram and even while I’m sitting in the Woman’s Center. I’m fidgety like a race horse about to be put in the starting gate. There are so many memories associated with the Women’s Center, surgical center, hospital and chemo lab.
Since my initial treatment, I’ve had a couple of biopsies that thankfully have been benign. I had a tricky lymph node in the left axilla, which was not the original area, that kept lighting up on the PET Scan. So, I had a partial lymph node dissection on the left axilla as a precaution.
The most important message I want to tell you is that life is a gift. Am I breathing? Yes! Then, I have a purpose and responsibility to go on. Life goes on! I have a responsibility to live every day with a smile on my face because I am a survivor. Generations before me went through clinical trials so that I could benefit from Red Devil Chemo, Taxol, Herceptin, Arimidex and Femara.
(All of my blogs are exclusively my experience. I am not a medical professional. This is my interpretation of my journey.)
By the time I was scheduled to see Dr. Wonderful (Hematologist-Oncologist), radiation was over and I came through it with minimal side effects.
Dr. Wonderful immediately started me on a chemo pill, Arimidex. The initial plan was to take it for 5 years as long as my bones, bone density and joints would allow.
Arimidex is a type of hormone therapy known as an Aromatase Inhibitor. How does Anastrozole work? Breast cancer is stimulated to grow by female hormones: estrogen and progesterone. Anastrozole (Arimidex) works to block the effects of the female hormones.
Okay…my view… the very hormone, estrogen, that defines you as a woman ends up globbing together with other estrogen cells to become breast cancer. So the very hormone that makes you a woman, trys to kill you. I hope you can infer that I find this entire concept, hideous, outrageous and unacceptable. However, I can’t change that so I will only give it this small paragraph.
I started Arimidex in October of 2009 and I was a trooper. I kept taking it even though it took a toll on my body:
By the end of the 12 hour workday, I could barely walk.
By Friday or Saturday, I hurt so bad that I could literally feel pain from every cell in my skin and it hurt.
It felt like someone was peeling my skin off.
With that said, I would take to the couch with my pain meds and heating pad.
Actually, compared to others, my symptoms were minimal. Four years into the medication, I spoke to Dr. Wonderful and she switched me to Femara in October of 2013. Femara is in the same category of medicine. It’s purpose is to block estrogen. Even though October 2014 was my 5 year point, I still take Femara. As long as it doesn’t effect my bone density, joints and ability to function, I will take it.
I am blessed because I was diagnosed with ER+ breast cancer so I have an additional chemo pill to block that estrogen. I am too blessed to be stressed! I’m alive so it’s a good day!
My first week of recovery went well. Victory church, my home church, provided meals the week after surgery and that was a great blessing. Doug, my girls and my mom took turns checking on me.
My post-op visit was scheduled approximately one week after my surgery. During that visit, I saw the plastic surgeon and the breast surgeon. First, the plastic surgeon’s nurse removed the gauze, mummy bandages. Then, the plastic surgeon examined 8 of the 10 incisions. Everything looked good so the nurse removed a few stitches which wasn’t the most pleasant experience but all in all, I was making great progress. Then the pain pump was removed.
Next, the breast surgeon came in to examine me. She looked at the incisions and focused on the right axilla, underarm. She asked me to lift my arm as high as I could so I hesitantly lifted my arm about half way in the air. Then she took my arm and pulled it straight up. I just knew my stitches were going to burst but they didn’t. She gave me some exercises to do every day to help me regain full range of motion.
Then she began to explain the pathology report. In the right axilla. she removed all lymph nodes that she could see and she dug around in there to get as many lymph nodes as she could reach. Below is a summary of the conversation:
Dr. “I didn’t find anything.”
Me “You didn’t get the cancer?”
Dr. “It was gone.”
Me “What do you mean?”
Dr. “I removed 20+ lymph nodes and there were two that were necrotic.” “They were the size of a regular lymph node.”
Me “I don’t understand.”
Dr. “I found the two lymph nodes that were tagged during the biopsy but the cancer cells were dead and the lymph nodes were the size of a normal lymph node.”
(First, in case someone has not followed the entire blog, when I was diagnosed there were two tumors in the right axilla. One was the size of a AA battery and the other one was the size of 1/2 of a AA battery. Now, they not only contained dead cells but they were the size of a normal lymph node, which was a significant change.)
The news really didn’t register with me at that time. My Hematologist-Oncologist (Dr. Wonderful), refers to it as a ‘complete response to chemo‘. Every time a doctor says that I say, “…or a miracle.” Some doctors give me a smile and other remain stoic.
One More Surgery
Next, the breast surgeon explained the results from the lumpectomy/reduction of the right breast. The tumor in the right breast was busted into small pieces. The pathology report reflected that it looked like buckshot in the tissue, scattered everywhere. They were just the size of little pencil dots. So there was no lump to remove. I am still amazed at the outcome. However, the pathology report did not confirm that there was a clear margin of healthy tissue so I needed an additional surgery known as a ‘margin revision’.
The surgical drains remained in place and the nurse wrapped me in a garment similar to a tube top except it had to be very snug to hold the drains in place. Doug and I went home and processed all of that information. Now I realize why the ultrasound technician was shocked with my progress. It was a truly unbelievable response. It was MY MIRACLE.
My spirit had been renewed by some quiet time with God and the hummingbird visit. I only saw them one more time after that day and haven’t seen them since. I was moving on to finish my mean chemo by May 5th and then on to surgery.
Final Two Chemotherapy Treatments
I made it through my seventh chemo, 4/21/09, and my eighth and LAST chemo on 5/5/09. I had the same routine where I saw Dr. Wonderful (Hematologist-Oncologist) first and then off to the chemo lab. My appointments were still on Tuesdays and I tried to work the rest of the week. By Friday, I needed my pain medication. By the time I was near the end of my chemo, Doug, my husband, drove me to work most Mondays and Fridays. I was physically weak and exhausted but I made myself go to work because I wanted to keep the same routine. My last Taxol/Herceptin chemo was on May 5, 2009. I still went to the chemo lab weekly for Herceptin.
Preparing For Surgery
At the last two appointments with Dr. Wonderful (Hematologist-Oncologist), I was given specific directions to begin taking B6, B12, Vitamin E w/o Selenium, Calcium and Vitamin D. My vitamin D levels were very low and they needed to increase before I could start radiation. Over the next 9 months, I still needed an Echocardiogram every 3 months because Herceptin could damage my heart.
After a final consultation with my team of doctors, Breast Surgeon, Plastic Surgeon and Dr. Wonderful, I decided to have the following procedures:
partial bilateral mastectomy, to include lumpectomy
lymph node dissection, right side
port insertion, at which time the PICC would be removed
The surgery was set for June 3, 2009. There was no negotiation even though that was the last week of school. The surgery needed to take place in a timely manner. My health was more important than the job.
My morning devotion on May 8, 2009, three days after my last chemo, was just what I needed to hear at the time.
From My Utmost For His Highest by: Oswald Chambers
“Entrust yourself to God’s hands. Is there something in your life for which you need perseverance right now? Maintain your intimate relationship with Jesus Christ through perseverance of faith. Proclaim as Job did, ‘Though He slay me, yet will I trust Him.’ (Job 13:15) …even when you cannot see Him right now and cannot understand what He is doing, you know Him.”
Those were powerful words of encouragement because I didn’t understand why I was in this situation but I knew God was with me every day.
I was between my sixth and seventh chemo treatment. Only two more to go. The last chemo hit me hard. Every muscle and cell in my body hurt. At the last appointment, Dr. Wonderful (Hematologist-Oncologist) told me to sit outside in the late afternoon to get some vitamin D and it would be good for me. So, I decided to sit outside for a while. It was just me and the squirrels in the backyard. I was looking at the aloe plants because that was the only place in the backyard that gets the sun.
A Moment of Weakness
It had been a hard weekend and I was home from a long day of work and I just lost it. I listed everything for God, as if he didn’t know. It went like this…
Grade III, aggressive
I have no hair
my eyelashes and eyebrows are gone
I hurt all over
my port got infected
a week in the hospital
a PICC line
needle after needle
I don’t understand why you let this happen to me. I’m sorry God. I know I’m not supposed to question you but I’m your child. Why? Why did you let this happen to me?
Then I felt bad. Many people will read this and think that I was wrong to ever talk to God that way. I would say to them that God already knew what I was thinking. He’s God. I knew that I couldn’t stay in that state of mind so I started finding the positive things about my situation. I told God…I am thankful:
for my team of doctors
for the chemo I could receive
for Herceptin developed just for the Her 2 positive cancer
for the fact I could still work
for Kelsey’s successful senior year
for Paige because she could give me the Neupogen shots
for my caregivers: Doug, Doug’s mom and my mom
that I did not get sick (throw up) with any chemo
I knew in my head that God worked all things for my good. I didn’t feel it at the time. I felt all alone.
With tears running down my face, I asked God to be with me and wrap His arms around me like he promised that he would do in His word. I was broken…I sat in silence…
Renewal of the Soul
Along came a beautiful hummingbird and then his mate a couple of minutes later. They fluttered around the aloe plants and obtained the nectar from the aloe bloom. Now, we had lived at that house 14 years and I had worked in the yard at all times of the day and I had never seen a hummingbird, much less a pair of hummingbirds. Then, I remembered a verse in the Bible about God taking care of the birds of the air.
Matthew 6:26 (NIV)
“Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?”
I sat in silence once again but it was a good silence. The kind of silence and time with God that renews your soul. I knew God had my back in all of this. I knew God was in control. I went inside and began to review notes in my devotional book. I read the notes from the Sunday that I was in the hospital, March 15, 2009. In those notes was a phrase…“I know God remembers me.” If fact, that phrase is listed 73 times in the Bible in reference to God taking care of us. Then, I listened to my favorite praise and worship song, “He Knows My Name” by Tommy Walker. Here are the words to the first verse/chorus:
I have a maker
He formed my heart,
before even time began
My life was in His hands
He knows my name
He knows my every thought,
He sees each tear that falls
and hears me when I call
He, my God, remembered me all along. I just needed to go to the source of strength.
Spring Break was over and it was back to reality. The second Taxol and Herceptin was scheduled for Tuesday, April 7th, the first Tuesday back at school. This time, I was prepared to ask the doctor for pain medication. I was trying to work through chemo but I remembered what my first chemo nurse told me. He said, “Laura, you don’t need to try to be a hero.” I didn’t need to prove how brave I was so I got my pain meds. There was no nausea with Taxol, for me at least, but the body pain was indescribable. The only way that I can think to explain it is that every cell in my skin hurt and that it felt like someone was peeling my skin off.
I tried to change my chemo treatments to Wednesdays so the side effects wouldn’t kick in until Saturdays but Dr. Wonderful, Hematologist-Oncologist, would only move it from Mondays to Tuesdays because I was already off of the schedule due to the unexpected week in the hospital.
After chemo, I went home and got ready to go to the Hall of Fame Induction Ceremony where they were honoring the top 20 students for the highest grade point averages (GPA). My youngest daughter, Kelsey, was being recognized for being fifth in the senior class that had at least 450 students. Super amazing!! She was a Senior that year and was taking five Advanced Placement (AP) classes, helping around the house and dealing with my illness. She was so brave and never told me all that she was going through until five years later when I asked her to journal how she felt during that period in our lives. I never realized the toll it took on her. I was so thankful to be able to attend the awards. Doug and I sat in the back right corner of the high school auditorium. I couldn’t be more proud. That night we celebrated Kelsey Brooke Starner.
After a week in the hospital and more rest than I had in years, I was back at work on Tuesday, March 17, 2009. I wanted my next chemo treatment that week but Dr. Wonderful (Hematologist-Oncologist) made me wait until the following week. By the time Monday, March 23, 2009 arrived, I was ready to get started with the next four treatments. I still followed the same routine to schedule my appointment late in the day, shower and listen to my praise and worship music. Doug’s mom, Sharon, drove me because I would be given Benadryl with the Taxol chemo. I didn’t know what else to expect from this new chemo: Taxol (Paclitaxel) and Herceptin.
Visit With Dr. Wonderful
Dr. Wonderful was glad to see me doing well. It was during this visit that she told me that she always suspected that my port was infected and she was very thankful we didn’t use the port or else I would have gotten the infection in my blood. She went on to tell me that I was BRCA negative and that was HUGE news. Therefore, I did not carry or pass the breast cancer gene to my girls. That was a positive! My white cell counts were good and I no longer needed the Neupogen shots. YAY! I was thrilled. After she examined me, she had more good news. The large tumor in the right axilla (underarm) was probably about half of the original size and the tumor in the right breast was shrinking as well. From now on, I would need to come to the Chemo Lab weekly. One week I would receive Taxol and Herceptin and on alternating weeks I would receive only Herceptin and I could drive myself to those appointments. YES!!
After the great visit with Dr. Wonderful, I was ready to get this treatment underway. Taxol and Herceptin would take about an hour and a half. Sometimes Doug’s mom would go to get us a McDonald’s cheeseburgers to eat before the Benadryl kicked in. Plus, it helped pass the time for her. I would have to update my notebook quickly because the Benadryl would make me go right to sleep so the time passed quickly for me. We came home and everything was normal. I thought…this one was going to be much easier. I got up and got dressed for work the next day, Tuesday and Wednesday. Both of those days were normal work days. So, I went to work Thursday and that’s when it hit me. I started to ache/hurt all over around 11 AM and Doug came and picked me up about two hours later. I went home and went to bed. I remember my motto…If I was hurting, then the chemo was working. I tried to find a positive in the journey.
On February 26, 2009, I was back at the Cancer Center for my last AC/Red Devil Chemo. I was thrilled! My PICC was inserted in my right arm and this was going to be the first time that it was accessed. First, I met with Dr. Wonderful (Hematologist-Oncologist) to review my progress. She was surprised that during my last visit I was able to take the AC chemo in the vein and today would be the last AC treatment. YAY! She examined the port site and there was no improvement. In fact, it looked even more suspicious so she was very confident in her decision to not use the port on the last visit. After a review of lab work, I was off to the chemo chair.
The only downside to a PICC is the bandage removal each time that it is used. My skin was very thin by this time and if the bandage was ripped off, a layer of skin would come with it. Some nurses were more patient than others. Once the bandage was removed, the site was cleaned and the chemo infusion began. I put my feet up and listened to my praise and worship music while I updated my notes regarding my visit.
Routine At Home
When I went home, I ate a light dinner, visited a few minutes and went to bed. By the 4th dose of AC chemo, more of the drug was in my system and it hit me hard. I took my anti-nausea medicine regularly with my purple Gatorade. I laid very still so I wouldn’t get sick. I stayed in bed until mid afternoon the next day. I rested Saturday, Sunday and stayed home from work Monday. I usually went to work by Monday but this was different. I was extremely exhausted, weak and nauseous. I kept hearing Jerry’s voice (my 1st chemo nurse) in my ear. “Don’t be a hero.”
I returned to work Tuesday, March 3rd because I needed to prepare the FCAT test booklets. I worked all week from March 3rd until the following Monday, March 10th. During that week, I noticed a couple new symptoms: shortness of breath, extreme exhaustion and a low-grade fever, 99 degrees. Gale was helping me with testing preparation and she noticed that my breathing had changed. My breathing was labored and every now and then I had to take a deep breath just to catch my breath. I called my doctor’s office and the nurse told me that I should be okay as long as it wasn’t a high fever. So, I went on working for the entire week and the following Monday, 3/9/09, I still had a fever so I called the doctor. She told me to come in that afternoon.
When I went to the doctor that afternoon, she was concerned with the redness around my port site and that I had a fever for a week. She put me on immediate bed rest. I told her that I had FCAT that week and she said, “I don’t care. You don’t go back to work until I tell you that you can go back to work.” OH MY! This was a major roadblock. I called my principal to tell her and I apologized profusely. Then I was sent to the chemo lab for IV antibiotics because they were supposed to work faster than the pills.
The next day, my mother-in-law went out of town with some friends. I told her that I would be fine. I did not feel well at all. I could barely breathe and I hurt all over. I ate popsicles and stayed hydrated with purple Gatorade. By mid-afternoon, my fever was getting higher. I went to the chemo lab for my IV antibiotics and my fever was 101 degrees. It was definitely getting worse. The chemo lab nurses had to report my condition to Dr. Wonderful (Hematologist-Oncologist) and well….she sent me to the hospital. I called Doug and my mom and told them that I was being admitted to the hospital. Even though I didn’t want to go to the hospital, I loved my doctor. That’s why I call her Dr. Wonderful (Hematologist-Oncologist) because she was so smart. She suspected all along that the port was infected and that is why she refused to use it. She admitted me to the hospital because she was concerned that the infection would lead to Sepsis, a condition in the body fighting a severe infection spread through the bloodstream.
I stayed in the hospital 7 long nights and 6 long days. No wigs…just my fuzzy hat, minimal makeup, and occasionally I got dressed and sat in the chair. My dearest friends visited me and saw me in my fuzzy hat. By Friday, I really wanted to go home for the weekend but Dr. Wonderful said no! I had to stay the weekend and on Monday, March 16, 2009 that infected port was removed from my chest by the Breast Surgeon. She had to take several inches of the surrounding skin so that she could ensure that the infected skin would be gone. I have a really bad scar but I am alive. I was released from the hospital that night and I went back to work the next day.
Everything was moving right along. The first two chemo treatments were behind me, the turbans and wigs were here and as a family, we were adjusting to our new normal. We were literally looking ahead which was easy to do because Paige and Case became engaged on February 8, 2009.
So we had plenty of planning to do to keep our mind off of chemo, ports and other cancer related subjects.
Complications With PORT
However, I noticed that my port incision was not healing and I scheduled an appointment with Dr.Wonderful (Hematologist-Oncologist) so she could look at it. I didn’t want anything to stand in the way of my treatments staying on schedule. I went to see her on February 10, 2009, and she was very concerned because the incision was still open and had suspicious drainage. She wanted me to go back to the surgeon who put the port in and I was not going back to that doctor. So I called to get a second opinion from a well renowned Breast Surgeon. She was willing to work me into her schedule the next day. (2-11-09) Yes, she was also a female doctor. This was a good visit with the doctor who would eventually perform my surgery. She felt that the port drainage was normal healing and did not seem concerned. She went on to discuss my diagnosis and surgical options. We would revisit all surgical options after the BRCA testing results were back and after chemo.
The next day was my regularly scheduled appointment with Dr. Wonderful (Hematologist-Oncologist) and for my chemo treatment. I went through the usual routine:
worked most of the day
left in time to shower and listen to my praise and worship music
Doug’s mom had come to live with us so she drove me to the doctor
met with the doctor and that’s where it changes….
When Dr. Wonderful was looking closely at my port and the ‘natural healing’ fluid, she said, “I don’t like it and I won’t use it.” I thought to myself, “OH NO! What does that mean?” I remember saying out loud..so I can’t get my chemo? She went on to say that I would need a PICC (Peripherally Inserted Central Catheter) until we could figure out what was going on with the port. She suggested that I could try to take my AC/Red Devil Chemo in the vein and that’s exactly what I did. She wrote orders to stop using the port and for the Chemo Lab to try to use my vein. Therefore, the infusion was a little slower but I tolerated it just fine. Thank God because I didn’t want to skip a treatment. We were moving right along and I wasn’t going to let this delay the treatment schedule.
Chemo Side Effects
This chemo hit me about 6:30 PM. Each one was affecting me earlier and earlier. I remembered what my first nurse told me…Don’t be hero, just go to bed. I had the same side effects after each chemo except now I had no hair and my eyelashes were beginning to fall out. Just didn’t think about losing the eye lashes. That was very hard. I just laid in bed trying not to move because I did not want to get sick. Doug’s mom brought me the anti-nausea medicine and my favorite light purple Gatorade.
On February 17, 2009, a PICC was inserted into my right arm. This procedure was completed by a radiologists at the clinic, no hospitalization or anesthesia. Oh my…surprise. A PICC is a direct line (catheter) to the heart. It is very similar to a port except the PICC is outside the body and requires very strict cleaning procedures because of placement.
Excitement In The Air
At home, excitement was in the air. My eldest daughter Paige, my nurse and my little girl was engaged and she was glowing. It was going to be a very busy time but it would all be accomplished in God’s perfect timing.