Hey there friends, it has been awhile and for that i am sorry. The whirlwind i have experienced over the last 10 days is hard to describe but i am going to try like hell to do so! When i last hopped on here i had many appointments looming ahead of me and so much uncertainty. We were also going into a long holiday weekend that i was trying so hard to be present for.
My fourth of July was wonderful due to the efforts and love of family. It is hard to describe the feeling of constantly knowing in the back of your mind that you are about to undergo hell and back. Every laugh, joke, or fun activity is a reminder of everything that you feel is being taken away from you. I struggle the most watching the people i care about when their own reminders flash across their face in front of me. I know one thing for certain, while i fight to kick cancer's ass i am going to try to be present and enjoy every last second of joy i can find. I am ready to take the bad days on by the horns, but boy am i truly fighting for the good days.
On Wednesday July 6th Tyler and i woke up at 4am and drove down to Boston for 2nd opinions at Dana Farber Cancer Institute. Thankfully despite our exhaustion the drive both there and back was uneventful. Upon arrival it is hard to describe, but i could just feel that i was entering a place of next level care. The atmosphere was just different, the calm efficiency of everything, as well as the amazing facility inspired confidence before even meeting my doctors. My first appointment was with a surgeon Dr. Elizabeth Mittendorf, if you google her i am not exaggerating when i say she is simply amazing. Dr Mittendorf inspired immediate confidence and trust that i had not felt with my surgeon at home. She strongly suggested a lumpectomy vs mastectomy due to my age and her confidence that my tumor would most likely all but disappear during chemo treatment. I think what was most inspiring about Dr. Mittendorf was the fact that she is actively engaged and passionate about breast cancer from both a surgical and medical oncology standpoint. She only performs surgeries specifically for woman with breast cancer and is an expert in her field. During my exam she was extremely optimistic about thoughtfully placed incisions to help me cosmetically which also made me feel really good. At the end of the meeting i asked her if she could be my surgeon, she asked if i had completed an MRI imaging and ordered one to be done while i was on site.
Directly after i met with my medical oncologist Dr. Poorvu who although was not as personable was just as knowledgeable as my previous Dr. We spoke about my diagnosis and why it was important to treat so quickly and aggressively, he also strongly recommended a lumpectomy vs mastectomy. We spoke about staging, on paper i have been stage with 3B triple negative breast cancer. Dr. Poorvu is working directly with my oncologist at home and will follow my progress throughout treatment. I will also meet with him after treatment to review all of my results and address any further treatment plan that needs to happen.
The impromptu MRI was next, and i was completely unprepared. Naturally an IV was involved with the process, needles are NOT my thing. I told the nurse how i struggle with needles, and you would not believe it... when she was putting the IV in she said "Oops!" i might as well have passed out right then and there! LOL I was so nauseated afterwards i had to sit in the chair for several minutes before going into the MRI room. In order to achieve the correct imaging of my breasts i had to be face down in the MRI machine with a bar running in between my breasts holding up all of my weight on my sternum. Trying to breath but not move with all of my weight centered on my chest was interesting to say the least. I tolerated the procedure easy enough until the end when the same nurse unhooked my IV catheter from the MRI machine and sprayed me with my own blood. I wish i was making this stuff up!
With the MRI done we went home, i forget to mention that for four days straight i had been battling a horrendous headache so that majority of the ride back Tyler drove while i was reclined with my eyes closed. As soon as i got home and sat down on the couch i could barely keep my eyes open, the exhaustion and nerves were just catching up with me! I do want to express how positive and empowered i felt after leaving my appointments, especially from a surgical stand point. Sadly the next day was also full of appointments. At 10:30 i went to the orthodontist to have my invisalign attachments removed. I will resume treatment once i feel up for it after chemo and surgery. At 1:30 i had a petscan which had my nerves through the roof because again.. IV! This time i was able to prepare and took one half of a low dose anxiety med that was prescribed to me to help prevent me from wanting to pass out during these types of simple procedures. Pathetic i know!!! I am proud to say that i did not get shaky or queasy for the 1st time and i actually enjoyed the hour i was locked in a room reclined in warm blankets. The petscan was much more comfortable than the MRI as i was laying on by back. Directly after my petscan i rushed to my hair stylist. I had decided to cut my hair short to help me adjust to not having any hair in the near future.
Many of you know the value i held in my hair, i had worked hard to grow it to the length it was and here i am chopping it off. I went from hair more than halfway down my back to hair just above my shoulders. I tried hard to keep a smile on my face and remain positive, bottom line i felt bald and insecure. There were so many things in my life that i was just needing to accept in the blink of an eye. It has been almost one week since the haircut and i can say that i embrace it more now. I feel better about the wait for my hair to grow back knowing i will be happy with short hair too. It is a bit bittersweet to have to say goodbye to my new short hairdo in a few short weeks. Ohh!! I would be remiss not to mention that when I pulled into the parking lot for my hair appointment i received the pre-op call for my port placement on Monday. I found out that this was an awake sedation and spiraled into a brief panic. I had to advocate for myself and explain that i am a redhead and have woken up from anesthesia before. I was left being told they would have to speak with anesthesia to see if there was anything they could do for me. MORE stress.
Friday i had plans with my best friend, time spent with her is so good for my soul. I feel like Racheal is with us whenever we are together. We got lunch and aimlessly explored several stores just catching up and chatting. After she left i was on cloud 10 just feeling positive and at peace with what was ahead. It was then that i received a shattering phone call from Dr. Mittendorf in regards to my MRI results. I guess it had never crossed my mind that anything else bad would be found on the MRI, i had it in my brain that is was just the before treatment "snap shot" of my tumor for her to compare to an after treatment MRI. I was told a new nodule was found near my tumor along with two masses in my central breast (same side), even more devastating i was told that there was a mass located in my right breast which to date had appeared healthy on imaging. I was told this could result in me needing a mastectomy and that i needed to go back to Boston for ultrasounds and possibly multiple biopsies. This call came at 4:45pm on a Friday, i called Tyler in tears while he was of course at work. I felt so defeated and scared, i had just pulled in at my parents house when the call came. I tried to pull myself together to tell them the news, i was left to wait and agonize over the information all weekend. I also forgot to mention that i called the hospital Friday morning to follow up in regards to the plan for my port placement Monday, they had already checked of my name indicating i had already been called -_- the good news is that they listened and would be putting me under general anesthesia. The weekend was spent trying to enjoy the beautiful weather with Tyler and family. I went live with my Uncle in our campaign group to talk more about my journey and fundraising. Feeling like i have purpose to advocate for others keeps me going more than many will realize. I am so thankful for the army around me.
Monday morning came, which was port placement day, as i was getting ready my oncologist called to tell me that my Petscan results had came back and that one of the small lymph nodes was slightly highlighted meaning she wanted an ultrasound and biopsy. This of course put a pit in my stomach, the last thing i wanted to go through was ANOTHER biopsy. I also mentioned the MRI and my concerns, my oncologist had not received the results as of yet but promised to follow up. We arrived at the hospital later (9:30) for my port placement. The prep process and getting my IV went shockingly smoothly, but then we had to wait for over 2.5hrs for anesthesia to be ready. As soon as they came in i was given a drug through my IV that relaxed me, i was wheeled to another room, switched beds and was given an "oxygen" mask. The last thing i remember is saying "Oh wow my lips are already tingly" and then i was waking up with the procedure done! Tyler told me after the fact that the nurse winked at him when they said oxygen, now i know why! LOL Tyler tells me that when they woke me up i just kept opening my eyes and saying "Oh wow" and "Holy crap" before going back to sleep! I remember doing so, but i thought at the time i was so much more with it, in reality i was acting pretty hilarious!
The bandage on my neck was originally placed in such a way that my neck was being pulled down and wrenched to the side. My nurse had to have the doctor come in to check the placement and get permission to take off the bandage and replace it. I literally could not move my head or neck it was twisted so tightly. As far as the placement of my port i was alarmed to realize that it seemed to have been placed low and towards the center of my chest near my cleavage. I just want to express how painful this is being so close to my breasts. Without a bra or any jarring step or movement i feel extreme pulling and pain. I cannot wait for this to pass.
I went home and decided sleeping off the rest of the affects of anesthesia was the best option, i left my phone on ring as i was anticipating more appointments. My phone rang THREE times each time i was just drifting off to sleep. Naturally i jolted to get my phone forgetting about my port and hurt myself each time. One of the calls was for my appointment in Boston to further image and possibly biopsy the masses found on the MRI i was told i needed to come on the 28th as they had moved someone. I tried to explain that the 28th is a chemo day but the woman that called to schedule was dismissive and rude. Mind you i was in bed trying to sleep following a surgery i had just had 2 hours prior. I was also called to partake in a clinical trial specific to my rare cancer, and my dentist called. When i tell you my phone and the onslaught never stops, i am mot exaggerating. As i reflect right now it has been exactly a month since i was diagnosed, the past 30 days have felt like years. It is so weird to try and explain how things feel as though they are moving in slow motion but at the same time you are so overwhelmed and exhausted. I quickly realized that the location of my port made it near impossible to sit up or move. You are told to take Tylenol to handle the pain, the 1st night was not so bad, the next morning was certainly the worst.
Okay so Tuesday morning the next day after port placement i had 10am chemo class. Getting out of bed was an ordeal, i was white as a ghost, shaking, and nauseous on the couch from the pain. Tylenol and ice on board i put on my big girl pants and got ready for class. Tyler and i were absolutely astounded my the physicians assistant that we had a one on one class with. Her energy, compassion, and manner made the experience absolutely wonderful. I later found out that she had fought cancer at age 22, i would guess she was near my age now. Sometimes i will never understand the whys but i am thankful that her path led her to be a part of mine. It is the small things i guess.
Tyler and i left the cancer center and headed to the hospital as i had a procedure scheduled to place a clip in my tumor. In the case my tumor disappears during chemo the clip with help the surgeon track which tissues to remove. I spoke with the radiologist at length about my MRI and the lymph node that was highlighted on my petscan hoping we could combine some of the procedures that needed to be done. He had the write up from my MRI on hand but not the images. The radiologist checked the lymph node in question and stated it had not changed since my prior scan and still was within healthy limits. After thoroughly searching all sites in both breast that the MRI was showing masses in nothing of concern could be found via ultrasound. This could mean that the MRI was super sensitive and provided a false positive. My radiologist called my oncologist to talk about my lymph node and determined no biopsy was needed, all imaging of my breasts was also being sent to Boston. I am uncertain at this time if i am still required to travel down for further testing. I hope to find out tomorrow.
So tomorrow is my 1st day of chemo/immuno therapy i am being hit fast and hard with intense treatment to stop my cancer in its tracks. According to my schedule Thursdays will be my treatment days. Tomorrow i will meet with my oncologist have my blood drawn, receive my immuno therapy, then several pre-chemo drugs before the chemo itself. I was told my bodily fluids will be toxic and was walked through many measures i will have to take to keep others around me safe. I am a bit terrified to have them touching my port in any way is it is incredibly painful. I think i am more worked up about that than anything else. I tried to do a little organizing of my chemo supplies to pack a bag for tomorrow but i feel so lost and have no idea what to truly expect or what i will feel up for. I am just going to wing it and try to keep a smile on my face.
Speaking of my chemo bag and supplies i again cannot thank you all enough for the outpouring of donations and items from my amazon wish list being sent. These have been a life saver for Tyler and i. I keep finding new things that i may need for my journey such as silicone scar strips and vomit bags... yes this is my new life people! But know i am so incredibly grateful for each and every dime/item.
One thing i only briefly mentioned above was going live with my Uncle this week, i wanted to talk about the incredible amount of people that have come forward this week to fund raise. The completely generous and selfish acts by so many make me feel almost undeserving like i'm a fraud, not someone fighting for their life. I still feel like i should be helping other people not receiving the help!
There are so many things going on including: bottle drives, bake sales, meal train, scensty party, pampered chef party, scratch ticket raffle, lemonade stand, paparazzi booth, Gofundme, amazon wish list, marathon, t-shirts, key chains, stickers, cups, a future bike ride etc. Just THANK YOU, all of you from the bottom of my heart.
If you go to Followmegsfight.com you can follow my journey, raise awareness, and share. Join the Facebook group and click the events tabs to see details for the events i listed above.
Keeping Faith,
Megan
Comments