Hey all, it has been a few days since i have been able to hop on here, mostly because when i have had time the exhaustion i have been battling has gotten the best of me. I worked until 7pm on Wednesday this week when i officially started my medical leave. It was such and incredibly bizarre feeling to submit my last audit for many months.
I have been sucked into a whirlwind of phone calls, emails, messages, and just overwhelming support and love from loved ones as well as complete strangers. I quickly realized i was putting too much pressure on myself to try and return all of the energy i was receiving. I am just hard wired to always give more than a receive and i just need to accept that for now, it is my time to receive and it is okay to not give back 150%. As i mentioned before i really struggled this week with allowing myself to be publicly vulnerable and ask for help, i have lost a lot of sleep over worrying how i would be received. It sounds ridiculous given my current circumstances but i have actually worried about whether or not people would feel i was trying to take advantage of them for asking for help or that i would not properly express truly how grateful i am for every kind word, share, donation, or care item. EVERYTHING both big and small is what is keeping me going right now. There is a saying or something of the like that when times get tough people either step up or step out and it is incredible how true this has been in recent weeks. I am deeply touched at the shocking amount of people that have stepped up and made me realize that i am valued in ways i never imagined.
One of the more incredible things that has happened this week is my Uncle Paul dedicating his marathon in October (this just so happens to be breast cancer awareness month) to my fight with cancer. My aunt and uncle spent time creating beautiful campaign shirts that can be purchased to aid in supporting my battle coined with the name "Megan's Fight is Our Fight". We also have a Facebook group https://www.facebook.com/groups/448353433404220/ were anyone that would like to follow for updates and the campaign can join and add others to help support the cause. My Uncle will go live during his training to share updates with everyone. I am so touched at the time and effort, i struggle to find words that are adequate to describe my feelings. I have been mostly at a loss for words sounding like a broken record to everyone who has supported me. Please know in my heart and mind i have endless words of thanks i want to express but i just do not know how!
On Monday as i mentioned i rushed for impromptu blood work, all of the results came back perfect, i like to joke that on paper i am healthy as a horse. I had an EKG and Ecocardiogram completed that also came back perfect. The slew of tests that i have to undergo are meant to provide my oncologists with a starting benchmark to better monitor how my body is responding to the chemotherapy drugs as they can negatively impact many parts of my body while fighting the cancer cells. Speaking of how the drugs will impact my body we all know that i will be loosing my hair, something that i hold great value in. Call me vain but my hair and breasts are really something that at the age of 30 and a few years of really working on my physical and mental health i hold near and dear to my current physical appearance.
I have done a lot of internalizing and in a short period of time i have realized what really matters, i have had to let go of a lot of things that i previously thought were so important. I spent a painstaking amount of time researching cold caps and even more agony committing to spending the money to order one. For anyone wondering, a cold cap system is 6-8 "gel gaps" that one would wear on treatment days that constrict your scalp and place your hair follicles in a hypothermia like state. The caps are cooled using dry ice and cannot be touched by your bare skin, in order to keep your scalp cold enough the caps need to be changed every 30 minutes by a 2nd person and worn at least 30 mins before treatment and 3 hours after. As you can imagine the cold and headaches, along with the process in general are miserable and for many is pretty unbearable. The constriction of the follicles ideally protects them from the chemotherapy drugs, thus preventing hair loss. Late Monday night i accepted my hair loss and cancelled the cold cap order. I decided that retaining the money for other needs and making my treatments as comfortable as possible were more important to me than trying to save my hair. It will grow back.
I know i have described recent events as feeling like a roller coaster. I thought it would be a "great" idea late Tuesday evening to join a cancer survivors support group on Facebook, i quickly realized it was not the group for me and left, but not before putting myself into a spiral of fear and worry. I laid awake easily until 2am fearing that my teeth were going to decay and fall out due to the effects of chemo. I had read one thread in the group were a person asked the group about how chemo had affected their teeth... Well lets just say the overwhelming response was that teeth decayed and needed to be removed. Here i am with invisalign taking painstaking care to maintain having zero cavities to date. I just thought to myself... with everything cancer is taking from me i need to lose my smile too?!? The next morning i called and left a message with my orthodontist right away. The panic i felt at potentially loosing another part of myself was overwhelming, i was asking myself "What ELSE?!".
My calls that morning also included calling the cancer center to follow up in regards to a slew of appointments i was awaiting to be scheduled for as well as calling the Dana Farber Cancer Institute to try and expedite being scheduled for my 2nd opinion. I was left waiting for calls back on all accounts (none of which came that day). It is hard to describe the almost constant sense of urgency and panic you feel once you know there is cancer in your body. The moment you find out you feel like you are fighting the clock and just want it taken out immediately. Every day you spend waiting for appointments and answers literally tear you apart mentally, physically, and spiritually. I get asked constantly how i am feeling, or how i am doing. I do not think most people that ask are anticipating the true answer. Long answer short AWFUL! There is no pleasant way to describe what i am enduring, on the outside i laugh, joke, and smile to cope with what i am going through. But the reality is so much more than that.
On Thursday i called and made an appointment with Madelines Hair Replacement in Saco, i figured having one wig professionally fit, cut, and styled for me would ease some of the pain of loosing my hair. My consultation was to be for next Wednesday the 6th, until something more important came up (2nd opinion in Boston). Naturally all of the calls i have been waiting for came while i was driving for important dates i have been agonizing over.
7/7 Petscan (test to confirm whether or not my cancer has spread)
7/11 Port placement
7/12 Chemo Class
7/14 First Chemo treatment
I called Dana Farber again and left a message. I was so stressed about my treatment getting pushed back due to waiting for my second opinion. Until you are in this position the CONSTANT fear of the unknown is something i wish upon no one. It is all consuming.
I was relieved to finally receive a start date for treatment, knowing how aggressive my cancer is i live in constant fear that each day matters as to whether or not my cancer is spreading. The tumor is a constant reminder, anytime it is sore or the area aches i feel paralyzing fear that my cancer is spreading. I spoke prior about an ultrasound showing my lymph-nodes still appeared healthy on the 17th of this month however this is not concrete that my cancer has not spread. The rarity and aggressiveness of triple negative cancer is also something to consider. Could my cancer spread into my lymph-nodes during the month wait before starting treatment? ABSOLUTELY.
This brings me to want to talk about my upcoming petscan. The amount of anxiety i have over needles is irrational. My logical thought knows this but my anxiety does not care. On July 7th i will go in and be injected via IV with fluid that makes my body radioactive. I will then sit for an hour alone due to my radioactivity at which time i will then undergo the petscan for approximately 25 mins. This test will ideally highlight any cancer present in other parts of my body. I should be able to know for certain whether or not my cancer has spread. I will at that point be staged and have a full understanding of what i am fighting. Anxiety about the needles aside... the waiting for these results will be painstaking.
On Thursday evening i was exhausted to the bone, it was gorgeous weather, i had a list of things to do, yet was beating myself up that i was just sitting on the couch not being productive or enjoying the summer before i am sick. My orthodontist called me back on her personal time while i was fighting an internal battle with myself. It is hard to describe but her energy uplifted my spirits instantly, we both laughed about various things and i hung up the phone feeling completely energized and uplifted. I always try to remind myself how my interactions with people can affect them more than i can ever realize. Genuine kindness goes a long way, we never can truly know what another person is going through and how we treat them can make or break their day. Side note, i was assured my teeth will be okay with a few precautionary measures! Thank goodness people! No one needs to see a bald, boobiless, and teeth less Megan running around! I got outside after the call and spent time in the sun re potting my succulents, running the dogs, and watering my flowers and vegetable garden. I felt accomplished and my heart was happy.
Tyler got home as i was finishing up, he is wonderful. When i say wonderful i mean it, this man even before my diagnosis will get home from work and wait on me hand and foot. We joked about ordering a little bell i can ring for "service" once i am undergoing treatment and healing from surgeries. Picture it, me delicately holding the bell with two fingers up in the air dramatically ringing for service! LOL.. Oh butler Tyler...
Okay so deep breathes.. that was ALOT. Let's talk about today.... Ignore my grammar, this blog is the emotional ramblings of a 30 year old on the edge!
I have talked about not sleeping, most mornings i have been up with the sun unable to sleep. Well shockingly this morning i slept until almost 9am!!!! I jumped awake and checked my phone in panic to make sure i had not missed an important call. It is funny moments later i received a call from my genetic counselor. My prayers were answered and i do not have any detected genetic mutations!!!! I was almost speechless from the relief i was feeling, this is so important as a genetic mutation could have meant i was 80% more likely to have repeat cancers throughout my life. A double mastectomy and hysterectomy were almost guaranteed for me if i tested positive.
Immediately after the call my relief turned back into panic, i knew now that i needed to make a decision about surgery. If i choose a lumpectomy i would need to have a procedure to place a clip in my tumor before i start chemotherapy on the 14th. The fear of the recovery, risks of complications, and multiple surgeries is too much to describe. A friend of mine just underwent a double mastectomy and recommended a group on Facebook that had taught her so many things. I joined the group and made a post introducing myself, and sharing my diagnosis. I explored the group and felt myself starting to know what i needed to do for myself mentally. Let me explain....
If i choose a lumpectomy i would have to undergo radiation which realistically should be avoided at all costs as the radiation itself can be cancer causing. My breast would be misshapen from the tissue that is removed during lumpectomy and the skin of my breast can be changed permanently from radiation in color and texture. Radiation can also change the shape and anatomy of your breast. I am not certain at 30 that i am prepared to have one "perfect" breast and one scared deformed smaller breast. If i choose this route i will also need to have routine mammograms and ultrasounds every 6 months for the rest of my life. If you have not ever experienced the mental toll of having this done and waiting for results i do not wish it upon anyone.. especially myself. If anything from the screenings were to be suspicious i would then need a biopsy, the biopsy for me was absolutely awful. I did not go in depth about my biopsy but i promise you this is something i do not want to have to repeat ever again. If you think the screening was terrifying to wait for a verdict do not even try to think about how awful waiting for the results of a biopsy are. Another thing, just because my right breast did not show anything on the mammogram does not mean i do not have pre-invasive cancer cells present.
So, if i opt for a double mastectomy my risk for repeat breast cancer is "almost" eliminated not completely but mostly eliminated. Assuming my cancer has not spread i am also eligible to not have to endure radiation treatment. The need for screenings every 6 months goes away and i gain almost complete peace of mind. The trauma i have already endured is something i never want to repeat again. I am already deathly afraid to touch my healthy breast in fear i will find a lump. Living that way the rest of my life is not an option for me. My breasts will also be uniform once reconstruction is complete. I think i am making the right decision for my physical and mental health in the long run by opting for a double mastectomy. This decision is still very new in my brain and i am working on acceptance.
I also received a call from Dana Farber today, I will be traveling with Tyler to Boston next Wednesday July 6th meet with a medical oncologist that specializes in the field of young women with cancer diagnoses like mine, as well as a surgeon. While speaking with the scheduler i learned that due to my age and the seriousness of my particular type of cancer that i am a priority and other patients would be moved to accommodate me as my treatment cannot be delayed. This was a bit alarming, have i just accepted my diagnosis without internalizing how serious my particular type of breast cancer is? I also had someone reply to my post in the mastectomy support group telling me "Triple Negative is a whole other ballgame. I should join their group to get better info". What the heck! This was a group literally called "Double/Single Mastectomy Discussion and support group". I joined for that reason. I have been internalizing all day about my type of cancer and what that means. Bottom line, this is extremely aggressive, rare, and harder to treat. Making the correct choices for my care are imperative. I know i am strong, i know i WILL beat this, but the facts are still hard to digest.
With my treatment around the corner i am just trying to process overwhelming amounts of information, my phone rings multiple times a day in regards to appointments and testing. Each time my stomach turns into knots and any form of peace i may have been feeling at that time goes out the window. For this reason i want to thank anyone that has purchased off from my amazon wish list. The items there are things i need to prepare for and cope with chemo as well as items i need for my household and pets. When i tell you that each day i cannot remember simple things i mean that. I feel so frustrated with myself for forgetting things i never would have missed in the past. Having these items set aside for when i need them is imperative as i truly could simply not realize or remember that myself, the household or the pets need something and then be in a position where we go without in a pinch. The items help so much financially but also mentally, knowing i have what i need set aside so that i do not need to worry later is priceless and i cannot thank you all enough for that.
I love and appreciate you all so very much. For anyone new to the blog everything i have spoken about above can be found here followmegsfight.com
Keeping faith,
<3 Meg
Comments