Good evening my friends!!
I hope you enjoy my quick update! 🙂
Good evening my friends!!
I hope you enjoy my quick update! 🙂
My mom brought this NBC2 news clip to my attention this morning, and I immediately knew it had to be shared.
Sadly, to many times over, the men seem to be forgotten when it comes to raising awareness about breast cancer. Even I am guilty of not including and reminding the men out there that they too can be affected.
This short video clip was an eye opener for me, and I encourage you to please watch and share it with the men in your life. They too need our support. ❤
Video courtesy of NBC2 News
I dedicate this blog post to the men in my life… Please check your boobies!
Last Thursday I finally established with a new gynecologist here in Miami. It took a while to get in, but so far I’m pleased with her approach. She looked over my medical records and immediately followed up on my pelvis. She ordered another pelvic ultrasound and a CA125.
The CA125 was going to be used to determine my baseline, and monitored for any abnormalities. Last night I received those results through my patient portal, and was pleased to see that my score came back at a 10, placing me within normal range. This was great news and a huge relief.
Today, I went to have my follow up ultrasound done. I feel confident that the results of the test will come back normal too. I should know for sure within a few days.
I did also receive a call from Moffitt yesterday afternoon, however, the results of the genetic testing were still not available. I was told it would take anywhere from 2-3 weeks, so they feel I should have some answers by the end of the week.
All in all, I’m happy that everything is coming together so well. It allows me to stay focused on moving on with my life. Though, I’m reminded everyday of this experience when I look at myself in the mirror, I’ve started to adjust and accept the changes that have occurred as a result of it.
My scar isn’t something to be embarrassed about, it’s a beautiful reminder of one of the most important experiences of my life. An experience that changed my life for the better and brought me closer to the person I want to be…
So as my story catches up to present day, I’ve found myself reaching a “writers block”. Sure there are things going on, but nothing major worth writing about. At least that’s what I thought. Then I remembered, this is a story about my journey, that includes the bad, the good and even the boring. With that being said, I thought I should at least update you on what’s been going on.
I’m still in the process of interviewing for the right job. Not that offers haven’t come to the table. I’m just still waiting for the one that will meet my needs as well as my new employers. It’s been a tough process going into a new field, especially because of the fact that most people can’t see beyond what’s written on a résumé, but there have been some great people that have taken the time to sit with me and truly see what I have to offer. I feel like I’m getting close though. I just need to continue to keep myself open to different opportunities and have faith that the right person will see my potential. If there’s anything my journey with breast cancer had taught me, it has been to be open to new experiences and not be afraid to try something new.
On another note, about 2 weeks ago I drove to Tampa again for some more genetic testing. I should have received word by now of my results but the phone has been silent on that end. I’m not scared of anything coming up positive. I suppose it’s because I’ve been told that if it did turn up positive, it only means I will need to make adjustments in my preventative care plan. To be frank, knowing what could potentially happen before it does is a huge advantage. It gives you the opportunity to do whatever you can to prevent it from occurring.
On that same day, I volunteered myself for the icare registry. It’s for cancer patients who would like to be notified of any new studies they can partake in. Of course, it has other benefits too, but that was the one that was most important to me. If there is something I can do to prevent someone from going through what I did, sign me up! I realize it’s a small step, but at least it’s a step in the right direction.
Good evening everyone!
I’m happy to report that the results of my first check up since surgery and the completion of my radiation treatment are in and I’m clear!
Thank you all again for your prayers and words of encouragement. I really appreciate all of you. 🙂
Photos and details to follow…
I can’t stress enough how important it’s been for me to keep all of my medical and financial records in order. Since the start of my journey in November of 2013, I had an insane amount of paper work to keep track of. Even the educational materials I received in the form of books and pamphlets were starting to accumulate.
I immediately decided at that point to come up with a system that would not only keep my information organized, but also make it easy to travel with. A binder was the easiest way for me to achieve that kind of organization and portability. The educational materials however, I left in a designated spot at home.
I kept my binder pretty basic, so that anyone that had to access it could clearly understand my method. To start, each doctor was labeled and separated with a divider. On each section, I printed the physicians contact information. This made it easy for me to share this with any other doctor that needed it.
Now, the testing I had done could have easily been filed 2 different ways. I could separate it by location of the facility or, simply place the test results in with the physician who ordered it. I chose to place the results of each exam in accordance to the physician that requested it. Most of them were ordered by my primary doctor anyway, and I wanted to reduce the amount of dividers in my binder. Whatever method you choose, just be sure it’s the right one for you, and that it’s user friendly to the person that will be assisting you during your journey. They may need to reference it during a time you may not be feeling your best.
After a while, however, I had to keep the financial records aside because my original binder was starting to get to crowded. This was an easy binder to divide as well. I made a tab for radiology, doctors, pharmacy, hospital, Moffitt, and pathology. I also included a spiral notebook for me to keep monthly track of my expenses, as well as the mileage associated with anything medical. I highly recommend documenting these things, as it will make it easier to calculate later for your taxes. Now, you may opt to do it with a software program which is great. I just like having a hard copy of everything, just in case. This goes for medical records as well. A few people I’ve met have chosen to scan their records and keep them on a USB. That’s a great idea but, you may run into trouble if you come across a doctor who is unable to load the information into his system. Bottom line, I found keeping a hard copy to be much more effective.
My last piece of advice for today is simply a reminder. As a patient, I encourage you to exercise your right to request a copy of your medical records. Often times, your physician is able to give you a copy right after your visit. If not, most offices are happy to provide you with a copy by mail. Many doctors now even offer the option to access your chart online through your patient portal. Remember, an informed patient is a good patient. Too often patients assume doctors never make mistakes and that’s not true.
Doctors are human too, and though they don’t mean to, they can document something incorrectly or forget to document it at all. For example, you may have mentioned an allergy you now have to a medication, but while expressing that to your physician, you also mention another symptom you were having or the amazing vacation you just came back from. In the moment your doctor is intently listening to what you have to say, they could easily forget to go back and input that bit of information. I know it’s happened to me before in my own life when trying to multitask, so why would it be okay to assume it couldn’t happen to my physician. What is it that I’m trying to tell you? Review your medical records. It could prevent something terrible from happening later…
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Though I’ve begun to fulfill what I feel is part of my purpose in life, I still feel like I’m meant to do something more. I’ve begun to share my story but, what’s next? Is what I’m doing enough? Am I really helping others to my fullest potential or is there more I can be doing? It’s a question I hope to find an answer to soon, but in the meantime, I just have to trust that my life is unfolding the way it’s suppose to, and do my best to learn from each experience I encounter.
On a completely different note, I have some growing concerns about the upcoming appointments I have next week. I’m scheduled to see my oncologist and radiation oncologist, as well as, have my first follow up mammogram since my surgery. It will be a busy day and, can I be honest with you? I’m really nervous about it. I’ve been feeling discomfort and at times pain since my radiation treatments and it terrifies me to think that something else could be wrong. I’ve reminded myself time and time again that it will be a while before things are back to normal but, a small part of me still fears the “C” word.
I’m sure it sounds crazy after how well everything has already turned out but, I suppose it’s just a natural response to the experience I had. Actually, it’s a relief to feel anything at all, considering how much time I had spent closing myself up and pretending all was well. And let’s face it, I’m in no way the poster child for perfection. I worry just like everyone else no matter how much I try to look on the bright side. It’s taken some time, but I’ve come to accept these feelings, and have learned that it’s not thinking about negative things that will hurt you, it’s dwelling on them that will keep you from moving forward and accomplishing the goals you’ve set out for yourself.
As my appointment date gets closer, I will be sure to pop back into the present and give you an update. For now however, I will continue to share what I’ve already experienced. Thanks for reading! 🙂
*** Note to reader ***
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After sitting with my oncologist and deciding what steps we were going to take, I scheduled an appointment to see the radiation oncologist. Together, we went over what the next couple of months would look like. All in all, the plan was quite simple. I was to first undergo 33 radiation treatments then, follow up with my oncologist so that he could start me on a medication called Tomaxifen. This medication is designed to block the hormones our bodies make naturally. Since my cancer cells were 100% positive for both progesterone and estrogen receptors, my hormones needed to be blocked in order to prevent them from feeding any cancer cells that may have been left behind.
They began preparing me for radiation by first “mapping” the area being treated with a non-diagnostic CT scan. This would ensure the radiation would only be exposed to the breast area in which the tumor had been removed, preventing any damage to my heart or other organs near by. It’s actually quite fascinating to know we have the ability to be so precise. In order to pin point the treatment area, an adhesive containing a tiny silver bead was placed in 3 different locations. One a couple inches below my left arm pit, the second, on the right side of my left breast and the third, a couple inches below my right armpit. These markings would later help them calculate the distance between the area being treated and the organs around it. Once the scans were finished, the tech tattooed the area where he had placed the tiny silver beads so that later, they would know where to focus the laser beams when positioning me on the treatment table. The tattoos are about the size of a small beauty mark so they are virtually invisible to anyone unless I point them out.
I got dressed and within a few minutes the tech returned to the room, handed me an appointment card, and with a big smile on his face, wished me the best of luck with my treatments. It was official! Each time I returned to the office, I would be one step closer to completing this part of my journey. Looking back however, I now realize how little I took into account the emotional ups and downs that could come from this. I became a pro at talking myself into positive thinking but deep down inside, there was still a sadness I couldn’t overcome. I couldn’t explain exactly why it was there so I kept reminding myself to think positively in hopes of one day no longer feeling that way. Sadly however, that’s not how the law of attraction works. You can’t just think positive thoughts and expect positive outcomes. You need to take action. Do things that promote feelings of positivity and love so that you get the same in return. Had I remembered this sooner, I would have later found myself in a much better place…
Today I’m hitting the rewind button and bringing you back to December 18th, the day I was scheduled to meet the Oncologist at Moffitt Cancer Centers in Tampa. I remember getting ready that morning and frantically trying to find the perfect outfit. I was looking for something cheery but still professional. It was important to me that I present myself as the knowledgeable and confident person I was. If you take yourself seriously, so will others and my health was definitely something to be taken seriously.
I finally put something together, packed up my medical records and off we went. It took us several hours to get there and during that time my nerves really started kicking in. What if I do need chemo? Not only was this going to take a toll on me physically, it was also going to postpone my plans to move. I again became frustrated with my current situation. I was so ready to take the leap and start a new life. Why was it all being placed on hold?
My thoughts were interrupted by the view outside the passenger window, we had finally arrived. “Wow, look at this place. It’s beautiful!” I felt as though I had arrived at a retreat, not a cancer facility. It was huge and the landscaping was beautifully done. We left the car with the valet and made our way into the buildings.
The nervousness I had felt in the car was slowly beginning to fade. I was in complete awe walking down the halls and through the lobbies as my eyes glanced at all of the beautiful pictures on the walls and the gorgeous scenery visible through the large glass windows. There were so many cozy sitting areas and cafés to relax in. It was in no way what I had imagined it to be. In fact, what I’m about to say may surprise you. I felt as if I belonged to this special and exclusive club. My soul was being nourished by so many loving and compassionate individuals who were there dedicating many hours of their lives to make mine better. I felt inspired and needless to say I was very emotional.
We finally reached the check in desk of the breast cancer wing. I remember feeling like I was checking into a day spa. Behind the reception area there was a wall with a large soothing waterfall and off to the side was a table with complimentary beverages. I gave the young woman behind the desk my name and after verifying a small bit of information and placing an ID bracelet on my wrist, she gave me a pager and a reusable Moffitt bag with a folder full of information, a pen and other goodies and showed me into the waiting room area.
My partner and I waited patiently and kept ourselves busy making small talk and looking at funny YouTube videos to keep the mood light. My name was called a few different times before they brought us back into the exam room. Once for insurance verification and important documents I needed to fill out and the other to get my vitals. It was a slow process but eventually moved faster once we were in the back. We met first with a physician doing her internship at Moffitt. Then we met with a counselor who provided us with information on programs available to cancer patients. I was on information overload by the time the doctor came in to give us his opinion.
Prior to my visit at Moffitt I had met with the genetics counselor and received the results of my BRCA 1 & BRCA 2 testing. Thankfully, after only a few weeks of waiting, the results were in and they came up negative. This was great news because it meant I wasn’t going to have to go in for a second surgery.
The doctor reviewed all of my records and expressed he was in agreement with my oncologist back home. There was no need for me to have chemotherapy. I would only have to undergo radiation and later be treated with hormone blockers. The doctor questioned my desire to have children as he stressed the importance of my being aware of the inability to have children during the 5 years I’d be on the hormone blocker, as well as the possibility of it decreasing my chances of being able to conceive a child in the future. It had been an emotional topic for me recently but, I reassured him that I had thought about it and was okay with the possible outcome. He also suggested going for further genetic counseling but left that part up to me. It wasn’t necessary but, I qualified to participate in a research study they were doing so he wanted to make me aware of it.
Then came the answer to a question I had been asking my physicians but wasn’t able to get a straight response to, “what stage was my cancer”? He told me I could safely call it “stage 0” cancer. Really?! I felt on top of the world, blessed, lucky and proud of myself for having caught the cancer long before it had grown into something far more severe. I was excited now knowing I could meet with my oncologist back home and officially start preparing my treatment plan. It was a very long and exhausting day but so worth it after the great news I had just received…
I woke up the following day after surgery feeling like a train wreck. I wasn’t in extreme pain but I was exhausted and still drowsy from my medications. I was actually able to get around pretty well. I’d say the only surprise I had that day was the blue urine I had as a result of a dye called Lymphazurin used during my surgery to help locate my sentinel node. I was a smurf for the day, no problem! 🙂
All was going well until a few days after surgery when I finally made the decision to stop my pain medications. I couldn’t take it anymore. They were making me nauseas, constipated, bloated and I was gaining a substantial amount of weight. Within just a few days I had gained about 10lbs. I felt horrible and it had nothing to do with vanity. I just felt like I was accumulating everything and releasing nothing resulting in my body feeling like a toxic dump. It took several days before my body began to regulate itself and I was beginning to feel uncomfortable but, the pain I felt from not taking my medications was well worth feeling more like myself again.
My surgeon called me within the first week to see how I was feeling and to report his findings. I explained what I had been going through and he reassured me it was normal. Till this day I honestly couldn’t have asked for a better surgeon. He kept me informed of his thoughts every step of the way and it made me feel like I too had a say in what was happening. That’s a big deal to anyone let alone an ex control freak like myself. I wanted to be involved in everything no matter how big or small it seemed to anyone else. It was my body and I had the right to know what was going to happen to it.
He made mentioned that after the biopsy of my sentinel node they observed the cells carefully to see if the cancer had spread and, to his surprise he found 1 lymph node positive for a single cluster (5-6 cells) of individual tumor cells. Since it was such a small count he removed only a few lymph nodes but needless to say it was something to consider when I sat down with my oncologist to discuss my treatment plan.
You can only imagine how I translated this in my head. “Why is he so calm? I was told the cancer was incapsulated. If it was, how did any of it, even the tiniest bit, spread to the lymph nodes? Wouldn’t it have been better to just remove them all?” I was scared and no matter how much I tried, I couldn’t understand how that wasn’t a big deal. My surgeon reassured me and helped put me at ease.
I later received a separate phone call with the news about my PET/CT scan. There was an area of concern in my right pelvis. “What?” I began to have flashbacks of the times my gynecologist suggested I have an ultrasound to keep an eye on the cysts I was developing. Prior to surgery we had talked about the correlation between breast cancer and cervical or ovarian cancer but, I wanted to believe that since I found my breast cancer on time, it wouldn’t have had the chance to spread elsewhere. However, regardless of what I thought, we had to be certain so I was scheduled for a CT scan immediately.
My family and closes friends were concerned. I hadn’t even finished recovering from my surgery and they weren’t sure if I could handle this or even be up to doing more tests. In all honesty, I wasn’t. I was afraid to know that I could have been wrong and that the cancer may have spread. That would have been the second thing I let go by. How could I live with myself? Than again, how could I live with myself now delaying something so important? If indeed there was cancer, waiting wasn’t going to change that and could potentially make it worse.
I wasn’t cleared to drive yet and since my mom and I worked in the same office we weren’t able to be off at the same time. This again was the perfect example of the importance of a solid support system. Without any hesitation my bosses wife told me she would be picking me up and accompanying me to my appointment. In fact, when the day came, she even sat in the room with me while I had my scan done to make sure they had me in a comfortable position and that I didn’t feel alone.
Between the many beautiful cards filled with words of love, prayer and encouragement, the beautiful bouquets of flowers and edible arrangements and the occasional house visits, I had all of the support anyone could ever wish for. There was still a long journey ahead but I wasn’t going to be alone. I was reminded of that again within those few weeks of recovery and it gave me the strength I needed to continue…
*** Note to reader ***
Be sure to check out my photos tab to see pictures of me taken during my recover. 🙂