“we're off to see the wizard”

I think I speak for most when I say, I don’t particularly like going to the doctor. So I knew I really had to buckle up as I began to Follow the Pink Brick Road.

Doctors, Tests and Needles…Oh My!

The First Stop: Fertility Specialist

When I met with the Breast Surgeon, I was told that because of my specific type of breast cancer, part of my treatment plan would require chemotherapy. As you can imagine, this news was extremely difficult to hear. The first question I asked was “Will I lose my hair?” Sadly, the answer was “Yes.” There would also be a long laundry list of other side effects…one of which I wasn’t expecting, the possibility of infertility.

Along with a million other things running through my mind, now I had to think about the possibility of not having children. This wasn’t an easy thing to process, especially because I’ve always wanted to be a mother. I may have not been ready for kids right now but it was something I saw as part of my future. In order to protect that part of my plan, I was willing to do whatever it takes.

The first step was meeting with a Fertility Specialist to discuss my options. Again, there I sat, my parents by my side, as I listened to every word the doctor said to the 27-year old woman sitting in front of her. Oh wait, that’s me she’s talking to! Everything still felt like an out-of-body experience and it was hard to snap out of it.

During that meeting, I learned all about the Egg Freezing process. The doctor took a very positive approach, not focusing on the possibility of my infertility but rather how fortunate I am to have this option, which has only been around the past two years. She also said that age was on my side, as my eggs could be “frozen in time” as 27-year old eggs. The doctor did say that I would need to think about what I want to do with them, should anything happen to me. I quickly responded “I’d like to donate them to my brothers.” Everyone in the room laughed and I looked perplexed as to why. My mom chuckled and said, “Kelly, that wouldn’t work. It would be like incest.” Wow, how did I not think of that?! Here I was thinking I was making a nice gesture, ha-ha! At least we all got a good laugh out of it – which we really needed.

While all the details of the process sounded a bit overwhelming, I walked away wanting to make the “investment,” even if it was just an “insurance policy.” Now, I just needed to get the “OK” to move forward with freezing my eggs (prior to chemotherapy) from the Oncologist.

The Second Stop: Blood Work

When I was younger, I dreaded having my blood drawn, getting shots and even swallowing pills. Sometimes I would even pass out! Luckily, as I’ve gotten older, I’ve been less fearful. It’s a good thing because little did I know that with this diagnosis – all of those things would become part of my “normal routine.”

To say a lot of blood was needed is an understatement. I don’t think I’ve ever had so many tubes drawn! Blood was needed for fertility testing as well as for several other tests. While drawing my blood, the Phlebotomist asked, “Are you alright?” I responded with, “Yeah, I’m fine…I just need to look away or I’ll pass out. This feels like a long time, how much more do we have?” “Oh, we’re only halfway there,” she replied. “Awesome!” I said sarcastically…and that was just the first of more “bloody” blood work to come.

The Third Stop: Breast MRI and Mammogram

Walking into the Radiologist office the morning of my appointment was like déjà vu. It brought back the nerves I had before my first ultrasound and ultrasound core needle biopsy. Now, I was anxious to see what a breast MRI and mammogram entailed. These tests were to not only get a clearer picture of the known tumor site but also to check both breasts for any other questionable areas.

The first part of the visit was the breast MRI. After changing into the standard medical gown and having blood drawn, they had me lay face down on the moveable examination table. The platform is specially designed for the procedure, which has openings to accommodate the breasts to be imaged without compression. Once I was situated on the table and given headphones to help with the loud noises, the technologist started an IV, which was for the portion of the procedure when they administered the contrast material. After about an hour of lying completely still, the imaging was finally over.

Then it was onto the mammogram. I’ll admit I had heard terrible things about them and here I was having one 13 years before we, as women, are suggested to. At first, the mammography unit looked like a scary contraption but it’s really not that bad. It’s just a few seconds of discomfort, when your breast is being compressed at the various angles. For me the most uncomfortable part was when the diseased breast was being manipulated. Luckily, I had a very friendly and funny technician who made the process feel like a piece of cake!

The results of the mammogram were very quick. After having time to look over my images, the Radiologist met with me to review everything. Fortunately, the mammogram only picked up the known tumor. The results of the breast MRI, however, would take a few days.

A message to all women: Do not put off getting a mammogram because of the scary things you may have heard, it really isn’t bad at all. You can do it!

The Fourth Stop: Genetic Counselor  

When I was tested for the BRCA1 and BRCA2 gene mutations, it was suggested that I have a consultation with a Genetic Counselor. The purpose of that meeting would be to not only review my family history but also to discuss the various genetic testing I should consider and their implications.

During that initial consult, we went over my family tree to see if there were any possible links to my cancer. Fortunately, there were not. However, since breast cancer is so rare in women my age, we also discussed additional genetic testing that I may want to consider.

While the Comprehensive BRACAnalysis is “a highly reliable and accurate test” for the sequencing of BRCA1 and BRCA2 genes, the BRACAnalysis Large Rearrangement Test (BART) was “launched to provide a way to detect additional large genomic rearrangements in both BRCA1 and BRCA2” (Source: Myriad). Thus, I was advised to be tested for a BART mutation as well.

In addition, another gene mutation that has been linked to breast cancer, among many other cancers is p53. My counselor asked me to give thought to this test as well.

After many discussions with my Genetic Counselor, doctors, insurance company, and parents, I decided it was best to “dot my i’s,” “cross my t’s” and make the investment in all of the testing, so I could have the reassurance of knowing all the facts – especially to aid with a future surgery decision.

Approximately two and a half months later, I now have all of my genetic test results. I am very pleased to report that all came back negative (no mutations)! What a big relief for both my family and me.

Even though I still keep in touch with my Genetic Counselor, I want to publicly thank her so very much for listening, her sweet nature, patience, concern, advice and loving support. You made a crazy time much more comforting – like I was talking to a big sister who was always looking out for me! Thank you for being a wonderful person that I’ll never forget.

The Fifth Stop: Oncologist   

Was I really going to meet with a doctor who deals specifically with cancer? Now I was officially the cancer patient...things were just still so surreal. When I walked into the examination room I felt fine but my pulse was skyrocketing. Even though I had my long list of organized questions, I was growing more nervous by the minute.

First, a technician came in to get my vital signs and ask if I was in any pain. Not long after that, the Physician’s Assistant came in. She asked me to recount everything that’s happened since I found the lump. I feel like I knew the story like the back of my hand at this point, since I’ve recounted it so many times. Then we discussed both my family’s medical history and mine at length. I suddenly started to get very hot and had a hard time concentrating. I was hearing what she was saying but focusing was becoming more and more difficult. I was pretty sure I was about to pass out, so I spoke up and said I didn’t feel right. Immediately, they opened the door to let in some fresh air and she ran out to get me some water and crackers. I had pretty much drenched through my clothes, so I changed into a medical gown. I guess reality was hitting me all at once.

She stepped out and gave me some time to lie down and relax. Once I was feeling better she came in to finish the appointment with a breast exam. Next the Oncologist came in smiling and asked if it would be okay to bring in some students with her. I didn’t mind at all, especially if it was to help them learn. Everyone was very nice and the doctor often placed a hand on my shoulder – talking to me in a very caring way. We went over my diagnosis and what my chemotherapy treatment plan would look like. Her recommendation was 8 infusions total, every other week, followed by a shot the day after each infusion to boost my white blood cell count. You wouldn’t believe how many questions I asked about chemotherapy and it’s side effects. While going through the details, that feeling came over me again. I had to stop the conversation as I felt as though I was going to pass out. They were very kind and all stepped out of the room to get me more water and time to regroup.

Eventually, I was “all there” and we continued the appointment. I explained that having children was important to me and asked her thoughts on freezing my eggs. The Oncologist understood, but due to the aggressiveness of my cancer she was only willing to give me permission to do one round of IVF. I couldn’t proceed if my menstrual cycle came late or not at all, as there wouldn’t be time.

Towards the end of the visit, she did a breast exam and mentioned that it was important to see if the cancer had spread. Thus, I needed both a CT and Bone Scan. Luckily, they were able to get me in for a CT Scan that day. Before wrapping up, we talked about clinical trials for a bit and she had someone meet with me to discuss them in more detail.

We met with the clinical trial contact to gather paper work and briefly discuss what the trial would entail. It was a lot of information to process at once, so I took it home to think it over. Then guess what I had to do next? More blood work! The man who drew my blood was so sweet and funny. I said “Don’t mind me, I just need to look away.” “That makes two of us,” he replied. It was nice to laugh. He then said, “Your blood is special, you must have royal blood.” Oh royal blood! Now I really liked hearing that! I’ve always liked to think there was some royal blood in me. Or maybe that’s just because I’ve always wanted to be a princess and have a weird fascination with crowns! Either way, at least now I have a stranger to help aid my theory! As he finished up, he wrapped my arm with a pink bandage to match my shirt. Now that’s what I call full service! He said I should go play a tennis match or something. Ha-ha.

It seemed like forever waiting for the CT Scan. So many steps you have to go through with insurance. Finally, it was my turn. I lied on the examination table fully clothed and they put a sheet over me and asked me to pull my pants down to my knees. I’m not going to lie; it was kind of awkward – especially coming from the guy technician who asked. Next, he hooked me up to the IV, which would administer the contrast material. I kept switching which arm to use for all these needles, as they were starting to look a bit traumatized!

The scan was fairly short; the weirdest part is when they push the contrast material through the IV. I was pretty sure I peed my pants and started to get nervous the tech would notice when he came out. So I figured I would just bring it up before it got awkward. As soon as he walked in the room, I said, “I think we have a problem.” “What’s wrong?” he asked. “I think I peed my pants…” I quietly said. “Well we can’t have you doing that, now can we! Are you sure you did?” he smiled as he replied back. “I’m pretty sure but I can’t say for certain,” I reluctantly replied. “You know peeing in your pants is only for babies and old people, right?” he laughed. “Yeah I know but I couldn’t control it!” I laughed back. “He said I’m just joking with you, that’s a very common sensation for most people when we push the contrast liquid. You didn’t pee your pants, I guarantee you,” he said. Once he left the room and allowed me to pull my pants up, I was relieved to see he was right. Thank goodness!

The next morning, I received a call from the Oncologist saying that my CT Scan was clear. So good to hear such great news! Now I just needed to get a Bone Scan scheduled.

The Sixth Stop: Breast Surgeon Follow-Up

Prior to my follow-up appointment with the Breast Surgeon, I picked up my reports and images from my mammogram and breast MRI. I also had them forwarded to surgeon, so she would have them for review prior to my visit.

The mammogram was clear, as the Radiologist mentioned, only picking up the known tumor. Unfortunately, the breast MRI picked up another questionable solid mass in another area of the diseased breast. This would require another biopsy to determine if it’s benign or cancerous. Because of its size and location, it would require a more challenging procedure than my original biopsy, called a Breast MRI-Guided Core Needle Biopsy. Ugh. Not exactly the news I wanted to hear.

The MRI also showed, as the surgeon suspected in my first visit, that there is chest wall involvement. This means that the known tumor is against the chest wall and possibly invading it. With this situation, If they were to go in for surgery, they very likely would not be able to get clear margins – which would mean that cancerous cells could be left behind in the chest wall. This news was a game changer. Even though they knew I would need chemotherapy, they now knew I would need neoadjuvant chemotherapy, or chemo prior to surgery. I was told that I needed to start chemo as soon as possible, especially if I was going to try to fit in one round of IVF beforehand.

Even though I was not looking forward to the idea of chemo and losing my hair earlier than expected, I looked at this as something that would buy me time with making my surgery decision. I also hoped that I would be able to see the tumor shrink, hopefully allowing for breast-conserving surgery.

Coming out of that visit, I had yet another set of appointments to schedule:

·      EKG and Echocardiogram (determine heart function prior to chemo)

·      Breast MRI-Guided Core Needle Biopsy

·      Mammogram #2

·      Bone Scan

 

The Next Several Stops: Additional Opinions

In order to ensure that I was making the best possible decision with my medical care, it was important to seek additional opinions. Fortunately, everyone had the same diagnosis and similar game plans. My decision would just come down to whom I felt most comfortable with.

So again, off I went to digest a wealth of information, set up more appointments, make decisions about my medical team and start to make plans for IVF.

Following The Pink Brick Road so far has brought many unexpected curves but I’ve been lucky to travel it side by side with supportive and loving family and friends. Always clicking my heels along the way, saying…

There’s no place like home!

Kelly

P.S. My brother Ryan (aka Ryden Ridge) released his latest EP today. Check it out here and in my “Song of the Week” section. Ryan, I love you and I’m so proud of you!

P.P.S. Happy Halloween! When I was younger, I was fascinated with The Wizard of Oz. Apparently, I would watch it over and over again. It’s a true classic that never gets old and thus the inspiration for today’s post theme. Here’s a picture of me in my preschool Halloween costume, dressed as Glinda the Good Witch. Thanks to my mom for the awesome creation!!