I felt a profound urge to hop on here and verbally vomit so many thoughts and emotions from recent days and weeks. I fully intend to talk in detail about my experience in Boston on Thursday but first i think it is most important to try and put to words how my recent days have went. Although relatively uneventful in a manner of speaking the last several days have been mentally taxing. After having my biopsies completed on Thursday for the three additional masses i spoke previously about, the mental waiting game truly began while waiting for results. On the outside i do not look or act like a cancer patient, in fact if you didn't know better running into me at the grocery store you would see a vibrant smiling, laughing woman seemingly in the prime of her life. My determination to stay that woman throughout this process would astound most people. I know that i will have bad days but they will not define me or my daily life, i intend to still live as much as i possibly can while my body does its thing kicking cancer's ass. I told Tyler yesterday that other than my obvious hair loss, my goal is for people to never suspect i am battling for my life. I am still Megan, not the cancer patient, i still have so much to offer my friends and family. I have struggled a little bit with accepting sympathy or the assumption that because i have started chemo i am helpless. I am so much stronger than my diagnosis and this battle, once i have set my mind to something there is nothing that can change it's course. Ask Tyler LOL.
I guess the reasoning behind these thoughts and my rambling is that i actually had a wonderful three day weekend with Tyler. I felt great, i had amazing interactions with friends and loved ones. My body worked hard to allow me this time of normalcy, i keep telling people that i feel like the energizer bunny... I can be go go going, and all of the sudden my battery dies without warning. I have found that at random i will hit a road block where my body just shuts down and needs a sit/lay down to recharge, then i feel great again. I am working on trying to recognize the signs and get used to this new reality. I rarely stop moving and doing so it will be a challenge, but i have a few ideas on how to redirect my energy mentally. Each day i enjoyed a nap on the couch in the sunshine, while i feel like it was time wasted my body is definitely telling me it was time well spent. Throughout the weekend i felt powerful, i was proud that after my 1st intense treatment i was able to have a few days were i felt good. Circling back to the agony of waiting and wondering for my biopsy results brings me to this point. Despite feeling good, smiling, laughing, and just enjoying life there was this little cloud that kept rolling into the back of my mind. I would catch myself more than i would like to admit thinking about the possibility of my cancer being found in additional locations and what that would mean for my future. I would quickly brush the intrusive thoughts aside each time, reminding myself to not fixate on what i cannot control and to place my trust in god. I have this super power of compartmentalizing things that would be absolutely crippling to most people. I truly think that my sheer power of will and positive thinking is what will not only get me through this but allow me to become an even more powerful force to continue doing what i love most. Helping and advocating for others.
When i woke up this morning the realization that it is Monday and that my biopsy results could drop anytime immediately jumped to the forefront of my thoughts. While laying in bed i logged into my patient portal and instantly my stomach knotted. I could see several items in my results section that were new, i debated on whether or not to open them or wait for a phone call. What if i opened them and saw bad news?! The agony and sheer panic of waiting for my doctors to call and answer my questions would be unbearable. I stared at the screen for what felt like an eternity before clicking one, i held my breath as i scrolled down... nothing... each and every one of the documents stated "Results Pending". I am not certain if i felt relief or more panic knowing i had to keep waiting. I decided to pack this into a box for later and move on with my day. This resulted in me cleaning out the refrigerator before even brushing my teeth this morning LOL.
Later this afternoon i went to the tanning salon, i am trying hard not to give up some of the few things that make me feel good, so an occasional tan here or there i have decided goes in the self care column. Anyhoo... i am laying in the tanning bed this afternoon and per usual my intrusive thoughts roll in. I realized i hadn't checked my patient portal all day and that i could very likely have biopsy results waiting for me. Naturally i am in the tanning bed on the verge of an anxiety attack thinking about going to the SUV and checking. I get out of the tanning bed and made it to my SUV in record time, my heart was beating out of my chest as i logged into my patient portal. I navigate to my results screen and two of the items were highlighted with the word "Updated". The crippling indecision and anxiety i felt while staring at the screen waging an internal battle with myself as to whether or not to look is almost indescribable. I clicked the 1st option and there it was, the results from the biopsy on my right breast mass. "Pathology Findings: Fibroadenoma" Benign and Concordant. I read the findings over multiple times to make sure i was seeing correctly. I even exited the document and went back in. It is weird to explain but instead of relief my anxiety grew even higher as i realized i needed to now look at the pathology results for the two biopsies on my left breast. I opened the next set of results and saw A. Focal Usual Ductal Hyperplasia and B. Unremarkable Benign Breast Tissue. I read the results over and over. I googled the terminology of the results for biopsy A. I google again, i read the results again, it couldn't be true could it?!? All of my biopsies came back as benign? My brain jumped to all the possibilities it just felt too good to be true, there must be a catch right? I called Tyler and told him the news, Tyler much like me was worried that some of the verbiage in the results could mean more tests. We were afraid to be excited and relieved. While talking to Tyler the call came from Boston and the first words from the doctor were "I have good news" i could have passed out from the relief i felt, my chest was so tight. I was told that my surgeon is confident my body is going to respond extremely well to treatment and that my surgery outlook was very good. I called Tyler back immediately, we shared instant tears of relief. This was the first time to date that i had been able to call Tyler with good news. I was ecstatic to call my parents and give them good news for the 1st time in months. I feel like i was able to push a reset button, going back to the high i felt after my consultations in Boston before receiving my MRI results. I am back where I started and pretty freaking happy about it!
So what is left, telling you about my experience in Boston this past Thursday and what exactly happened. I want to preface things by stating how incredibly fortunate i know i am to be able to travel to the institutions i have to receive top notch care and expert opinions. With that being said i want to be completely transparent and candid in my thoughts and feelings about each experience. I wish i could tell you that everything went smoothly and that i was impressed and left feeling confident in the care i had received. For those of you that do not know from previous posts Tyler and i traveled to Brigham and Woman's hospital on Thursday of last week in order for me to have an ultrasound guided biopsy on my right breast and two MRI guided biopsies on my left breast for additional suspicious masses that were found via an MRI my surgeon had requested. We arrived at the hospital, navigated the parking garage and found a set of elevators. One of the elevators had a do not use sign, much to our surprise it was still being used so in we went! The vestibule area was full of debris almost as if someone was squatting there, blankets, trash etc. It was not quite what i expected out of the gate at one of the country's top hospitals. When we exited the elevator i instantly felt like i had been dropped into an airport like atmosphere, i could feel my anxiety spiking.
Tyler and i made quick work of finding bathrooms after almost 4 hours in the car, much to my horror the bathrooms were worse than most airport restrooms i had been in, the metal partitions were lop sided barely attached to the walls, the stalls were filthy. My new found anxiety of catching something reared its ugly head, i have never peed so fast in my life. I felt even more ramped up anxiety but also a twinge of astounding disappointment as i had set my expectations so high. I think i was expecting the same awe i felt while visiting Dana Farber Cancer Institute for my 2nd opinions. I did feel some relief when we entered the breast imaging center and waiting room as it took me out of the rat race outside the doors. My 1st appointment was at 11am for the ultrasound guided biopsy on my right breast. I knew what to expect and was dreading the process, i did feel much more prepared than i have in the past and i am so incredibly proud of the strength i have developed to deal with these procedures. Two months ago i would have had a panic attack for a quick blood draw. The biopsy was easier for me to deal with than my 1st however some aspects were more uncomfortable, the Dr kept such intense pressure on me body with the ultrasound wand that i felt like i could not breath. The actual sampling process was clearly completed using the simplest of tools which involved 6 separate entries and hard press clicks of a manual needle. I was taken aback by the simplistic approach compared to how this same procedure was completed at home with more advanced tools. The Megan of two months ago would have passed out withstanding the entry of the core needles and the straining of the doctor to click the manual core sample each time. I sat up and went straight to have my mammogram completed with no problems. Again i am so proud of myself. I was then sent to hang out until 1:45pm for my MRI guided biopsies.
One of the other things that i struggled with out of the gate is that i felt like i was just another number going through the revolving doors, i did not feel any connection or compassion from any of my techs, nurses, or doctors. It was almost so overwhelming that i was on the verge of tears, desperate to encounter someone that i felt like actually cared about my well being if that makes sense? I was already entering the procedures terrified, it became almost all consuming with this realization.
Tyler and i went to the cafeteria to grab lunch and quickly decided to forget that decision and go to our car in the parking garage. The craziness of the halls and cafeteria truly felt like a busy airport, definitely not something i wanted to voluntarily be a part of. Luckily i had brought crackers and water for the trip, i tried to keep my mind distracted and not fixated on what was yet to come.
I was pulled in for the MRI guided biopsy promptly at 1:45pm. I was placed in a chair and given my IV, i had so many questions about the process. I was so afraid of having to lay directly on my port during the process as it is still very new and painful. I felt as thought many of my questions were fluffed over, the process was made to sound like sunshine and butterflies. In reality it was actual torture. After my IV i was subjected to sitting and waiting while i listened to the Dr. talk to someone who had just undergone a similar procedure to mine. Afterwards i was quickly ushered into the mri room, for the procedure you have to lay face down with all your weight on your stomach and sternum. There is a bar that goes in between your breasts and your face rests in a small circle with your arms above your head. The positioning becomes difficult quickly just trying to keep shallow breathes and not move when all your weight is seemingly pressing on your chest. Once i was in position the doctor and nurses started trying to clamp my breast, for reference this is far more severe than any mammogram you could ever imagine and your breast stays clamped throughout the entire process. I remember being told that my breast was being marked (two locations) the marker felt like needles stabbing into my skin. I was sent into the MRI machine for my initial imaging, this particular MRI was worse than my prior as i could not see through the face muff to have a point of reference. This meant that every time i was sent in and out of the machine my stomach was rolling with nausea, instead of having the sensation of going forward or back my body felt like it was rolling sideways. Mind you while i am fighting nausea i cannot get fresh air, and all my weight is pressing on my stomach and sternum, I am also only a week out from my 1st intense chemo treatment and spent the 3 days prior to the procedure fighting a fever. I was already overwrought and exhausted before even leaving my house that morning. It took several trips in and out of the machine for imaging. The doctor then started the numbing process which was excruciating due to the way my breast was compressed and the entry sites were in my areola. After the 1st round of numbing at two sites i still had pain and needed more needles. Before i could recover i was sent into the tube again for more images where i fought rolling nausea, the moment i would gain my composure i would get moved again and restart the process. The Dr. was having a difficult time with placement of the biopsy needle and needed to numb the site again due to the process taking so long. After three more trips in an out of the tube and painful needles i was told it was time for the biopsy. Prior to this point i hit my breaking point while in the MRI machine and was sobbing, my entire body was shaking, i was fighting trying not to move or hyperventilate. I was so embarrassed and tried to compose myself for the trip out of the tube, this was my lowest point since being diagnosed i felt broken and defeated like i was ready to give up. I had tendrils of snot falling from my nose that i could not wipe, the mortification of asking for help wiping my nose because i had broken down crying. The prolonged pain, nausea, and feeling like i was suffocating became too much. The Dr would not communicate anything that was happening so i was continuously getting bombarded with searing surprising pain and then getting jolted into the machine without notice. For the 1st time all day one of the nurses took pity on me and rubbed my back during the biopsy process. The 1st biopsy was hell, they use a vacuum like needle that makes a suction noise for each sample. The 1st three vacuums were okay, the last three were agonizing. I was told that if i felt any pricks to say so and they would stop and numb right away, the 4th sample felt as if my breast was being torn away i frantically told the doctor, she said i'm sorry and kept going, I was almost begging for her to stop by the time the 6th sample was taken. Then it was time for the 2nd biopsy, i was in a state of sheer terror that i would experience the same pain a second time. By the grace of god the 2nd biopsy was not as painful. I was then sent into the tube again, do not forget the blinding rolling nausea each time i was moved. Then back out to place markers, and back in for final images. I was then asked to lift myself into a sitting position, my right arm was stuck in a bent position from keeping that arm so tense the entire time with the IV, some of my fingers were even numb. The doctor was trying to hold gauze to my breast as i fought to sit up, i then had to walk to another room and climb steps to get onto another high bed, all the while she is holding the gauze to my breast as it was gushing blood. She stood there compressing for quite some time as the bleeding would not stop. She ended up giving up and much to my shock i got a couple of steri strips and a normal band aid. For reference back home my much less invasive biopsy where i was not bleeding i got steri strips and a full compression bandage. I told her i had a 3.5-4hr commute to get home and asked for extra ice packs, to my horror i got the break away packs that are liquid and only stay cold for maybe ten minutes. When i exited the room to go for my after biopsy mammogram i was astonished to see that i had withstood the torture for TWO hours!!! Halfway home I realized I was bleeding through my bandage and started packing my bra for compression. Anyone that knows me understands that i get queasy from a paper cut let alone what i had endured. Today four full days later i finally was able to remove the steri strips and was horrified to look and find THREE biopsy sites not two. They were still gaping and bleeding, as a young woman feeling as though your breasts are being mutilated it is heart wrenching. I have made leaps and bounds on acceptance and moving on from things out of my control but i struggled with that today. If there is one saving grace, i somehow did not have any pain after the procedures, i think i was spared from additional suffering in some way.
I continue to be humbled everyday in ways one would never expect. I am thankful for my army and all of the amazing things in my life. I know this is just a speed bump in the grand scheme of things so i will choose to not focus on the negatives. Unless they tell me they want another MRI guided biopsy LOL
I am still keeping the faith,
Meg
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