When I look at the number above, at first glance it does not seem like much, but when I truly think about this number it seems huge. I have now been living with Stage 4 Breast Cancer for 2,190 days (6 years). It seems like an eternity. Almost now to the point where I almost do not remember who I was six years ago. My kids have now been living with their mom having cancer for more than half of their lives. Some days have been ok, some days have been harder than anyone could ever imagine and every day has had the weight of this reality bogging it down. The last 365 (give or take a few) have been by the far the hardest.

In the last year I have been put through the wringer. I have been on 4 different treatments and have had every side effect that could have been possible…..and then some. Sometimes when I am the doctors office or more so on a recent trip to the ER the nurses and doctors look at me like I am some sort of alien. Reading my charts wondering how in the hell I am still here. Everyday I ask myself the same question. How am I still here and why do I have to suffer so much?

In the last year I have lost my ability to work as this cancer has become a full time job. I loved my job and the people I worked with. I tried my hardest to try to go back to work but cancer had another plan and gave me hurdle after hurdle to deal with. Since out of work I have had to spend hours and hours on the phone with the state and social security trying to prove to them just how sick I am. The system is so backwards and if I felt that I had a lot of life left in front of me, I would make it my mission to try to help sick people with this process. I am lucky and thankful that my loss of income was not a huge burden but for most it would be and a sick person should not have to go through what I did just to get what they deserve.

The last year has completely depleted me in so many ways. Some tough conversations were had but I am not completely ready to throw in the towel yet. Today, I feel ok. The current treatment that I am on has been fairly easy on me. Ironically the “ease” of this medicine most likely means that it is not working. All of my current labs also are pointing in the direction that this treatment is not working. My current tumor markers are the highest they have ever been and my liver enzymes are heightened as well. But right now, I do not care. I have asked to be blissfully ignorant right now in regards to my cancer. My dr. doesn’t love this approach but has agreed to give me one more month on this treatment. I ask for this approach because I cannot remember the last time in the past six years that I have felt as “good” as I do right now. Reality is that I will most likely never feel this “good” ever again in my life. I will have scans early May. If the scans are good- amazing and I will embrace the miracle. If the scans are not good (which I am prepared for) I will not start any new treatment until June. I have a very important trip to Portugal that I have been talking about doing for years and I want to feel my best for! Right now I am trying to live as much life as I can as I feel like things are going to start to change for me when/if I start a new treatment.

Having end stage cancer for 6 years you learn a lot. Here are some of the things …..from a dying woman’s perspective……that I think are most important:

• This world is cruel and as I look at how some of the young people today act I think it is just getting tougher. I have learned that while I teach my kids to be kind and always treat people as they would want to be treated…….there comes a point where the niceness has to end and you just have to tell some people to Fuck off!!! My kids loved this new lesson
• Do what makes YOU happy. Someone will always be upset with the choice you made so do what makes you happy.
• You cannot change other people. I have spent a great deal of my adult life thinking that some of the people around me would change and be/act how I would want them to be and every time I would be disappointed. You cannot change anyone. Once you learn to accept that you will stop (or at lessen) how often you are disappointed.
• Live a life that your kids will be proud to talk about one day. Everything that I do is for my kids. Everything I do for them I hope that one day when I am gone they will talk about with pride
• Find the joy in the small and simple pleasures. They will truly be the things you appreciate the most.
• You get one shot at life. When you are looking death in the eye make sure that your list of regrets and things you wish you could change is short.

I am thankful for the past six years. I am thankful for those that have been there for me through it all. I have felt so much love from so many. I am not sure how much longer I can physically or mentally tolerate this journey but I will continue to hope and pray for a miracle and live my life to the fullest in the meantime.

For the past 5 years and 9 months, I have put my best foot forward when it comes to my cancer “battle”. I put battle in quotations because in a battle there is a winner, in this “battle”, my “battle” there will be no winner. There is only one way for this “battle” to end. I smile when people ask me how I am feeling and say “ok”. I spare most from the hard details to prevent them worry. I have even convinced myself that maybe it will all be ok. I used to think that I would be the One. The One who lives with this disease for a normal life span. I am realizing more and more that will most likely not be my fate.

These medicines that I am put on all have horrible side effects. Each one worse then the other. A few months ago when I had a terribly painful rash on my body, one where I had to lather myself in prescription cream and then cover my entire mid section in gauze just to move around I thought that it could not get any worse. Then……I lost my vision. Not completely but enough to be terrified that I was going blind. Then…….I developed severe severe neuropathy. My neuropathy causes random cramping in my legs and a constant burning (like walking over hot coals burning) in my feet and my left fingertips are all numb. I have to wrap my feet in ice packs every night and throughout the day just to get through it. All while the normal cancer side effects are all present as well. Can’t wait to see what future side effects I may endure- haha. It’s funny isn’t it how well I am at hiding all of this. When you see me you’d never know.

Since the end of November I have lost three metastatic sisters/friends. Jen I met when we randomly shared a cab to the airport at a breast cancer conference in Philly. We stayed in touch and sometimes would see each other during our treatments. Jen made the admirable decision to stop her treatments as the side effects were too harsh. She managed to live a few really good months where she felt better than she had in years and sadly passed at the end of November. Katie was one of the Dana Girls as she had dubbed a small group of us that all met on the 9th floor at DFCI. Katie was an avid runner who most recently ran 41 miles on her 41st birthday this past May. Katie’s body couldn’t handle anymore treatments and sadly she passed a couple of days before Christmas. Christina I had actually met through a mutual friend years ago and was recently connected with through the Gloria Gemma Foundation when she has a recurrence of her cancer and was now stage four. She had a tough go from the beginning but always stayed positive and always ended every text with “I’m here if you need anything.” That was the kind of person she was- going through hell but offering help to someone else. Sadly she passed away a couple of weeks ago. Often times when someone with MBC passes everyone will say “wow she went so quick” when in reality- for me- I’ve been dying for almost six years. Clinging and fighting for just a little bit more life.

I had scans this past Friday. There is a patient portal that all of our test results come through often times before we have even spoken to our dr. I received one of the results before I had even arrived home from Boston on Friday and the others that night. The results were not good. This “miracle” medicine that has caused me so much grief over the past 12 weeks. The medicine that 5 weeks ago deemed such a good response is no longer working and the tumors in my liver have progressed and grown. This is the rollercoaster of my life. You live treatment to treatment, scan to scan. You take the good news in but you don’t celebrate it because you know that it could be bad news just as easily. I am not sure what the next steps are yet for me and for this cancer but I am sure that they are not going to be easy.

I sat with these scan results for the past few days and decided not to share them even though many people asked. I did this for many reasons. I have not yet spoked to my doctor and wanted to wait. It is exhausting to talk about. I am tired of living this life. I hate that a lot of my conversations with people revolve around this disease. I hate what this has done to my family. I hate that with every medical disappointment I am losing hope and faith. I hate knowing what is to come for me and that this is my life.

Imagine living everyday wondering if every little ache and pain is normal or cancer.

• My cancer riddled body is full of aches and pains. Some new, some old. Some from my new medicine, some from cancer, some from getting older. Every little pain, headache, cramp; I wonder if its normal or from my disease.

Imagine the medicine that is being pumped into your body making you so sick but you have to tolerate and put your best foot forward in hopes that it kills the cancer.

• The other day while getting my radioactive injection for my bone scan I laughed as the nurse had so much protective gear on to handle this injection and then the vial comes through a secret insulated door in the wall and then in a heavily insulated tube b/c the people handling this vial need to be protected from what is in the vial. The the nurse takes the vial and injects the contents right into my body. The irony huh!!
• My new trial med made me very very sick for almost two weeks during the first round. The second round came with two very rough days and then tolerable side effects so I was happy with that.

Imagine waking up in a foreign country not being able to see while on a much needed vacation. Imagine trying to keep it all together in an effort to not scare your family. Imagine still making it a good day for your kids and having fun so they don’t remember this from this trip.

• I woke up in Aruba on day two of our trip not able to see. I have worn glasses all day everyday of my life since I was 8 years old. When I put my glasses on that morning I could not see a thing. All was a blur. Without the glasses, I could see enough to get around but all was blurry and at night the lights looked like a million fireworks going on. Sounds fun right, a fireworks show every night- trust me it is not. I spent the better part of the day talking with my medical team trying to figure out what was going on and how to handle it. (This issue with the eyes is a know issue and I receive many eye drops while I am receiving my infusion (and for a week after) and I also have to keep cold compresses on my eyes for two hours while I receive the infusion.) Bottom line I needed medical attention ASAP and on a Sunday in Aruba there were not many options and I wanted to avoid the emergency room at all costs. We waited until Monday morning and I was seen at urgent care, ,was given some medication and was told by my Boston doctors that I could remain in Aruba and we will see what happens to my eyesight within the next couple of days. The rest of the trip was nerve wracking and Trevor and I were on edge in regards to this. I kept wondering if we were going to have to go home early, if I was going to go blind or if this would resolve. The medical care in Aruba was fantastic and I was astonished to see the the same medicine I get here with medical insurance was a fraction of the cost in Aruba without insurance and that the eye exam I received was completely free!!! Do better America, do better!!

Imagine leaving a family vacation with a lump in your throat knowing that the odds of you returning to your favorite island with your kids is very very slim. Knowing that the next time they come will most likely be without you.

• This happens to me all the time. I always wonder- Will this be my last Christmas? My last vacation? The last of my kids birthdays? These thoughts have been a constant since I was diagnosed and thankfully I have been able to do and experience so much over the years.

Imagine having your whole world revolve around your cancer.

• Lately and I think probably as things get harder my life will start to revolve more and more around my cancer. More appointments, canceling plans b/c of my chemo schedule, missing things for the kids because of being at DFCI or not feeling well. This past week I could not drive or do much so my independence was ripped from me and I had to rely on many people to help me or take me places. I am so thankful for everyone’s help and how quickly this in my life jumped into action.

Imagine receiving good news about your recent scans but being so numb to this life with cancer that you can’t even get that excited about it.

• I had scans on Monday and the scans showed that this medicine is working for me. All of my liver lesions have shrunk, the lymph nodes in my chest have shrunk and there was even a decrease in disease in the affected areas in my bones! This news is amazing and the results we have seen from a medicine in a really long time. This is exciting and I am so thankful that the medicine worked but it is hard for me to jump for joy. That may seem weird but these results came at a huge cost for me. My eyesight and the degree of sickness that this med caused me was really hard for me. Mentally and physically. I also know through experience, that this was one good result. We take it and hope for more good news but I am not cured just more time was bought. I hope I do not sound ungrateful, but this is not enough for me anymore. I go through so much, so much that I don’t even share or let anyone really see, and I need more I want this disease gone and I would give ANYTHING not to have to do this anymore and to be healthy.
• Right now my eyesight is starting to resolve and I am seeing another eye specialist this morning. If my eyesight resolves and the severe neuropathy that I have been having gets better with the medicine I just started, then I will start back on the trial meds next week with a reduced dose. Scary b/c I really hope that the reduced dose continues to work and does not affect my eyes in the same way. Fingers crossed.

I know that a lot of this stuff is so hard to imagine for many but this is my life. The last six months of my life have been very very hard. I continue to try to move forward in a positive fashion but it is really hard getting knocked down so many times and dealing with so much. I am tired but still hopeful.

Doxil was supposed to be my shining star of a medication. It was supposed to be the introduction to IV chemo that I needed to halt this cancers growth and maybe shrink some of these tumors for the first time in a long time. Doxil was supposed to the be “easiest” of IV Chemo’s.

Well Doxil, for me was NONE of these things. It started off with a massive allergic reaction that rattled me to the core. Followed by 8-9 hour treatments through desensitization. Then a week after treatment nauseous and fatigue that was indescribable. After my third treatment a few weeks ago I broke out in a rash on my body that turned into welts and open sores. A dermatologist confirmed yesterday that this rash was toxicity from the chemo that was coming out when I sweat and irritating my skin! I have been wrapped in gauze and in terrible pain for the past couple of weeks. Oh yeah, the mouth sores- can’t forget about them as well. Mouth sores so painful that I could barely eat solid foods for a week. I also found out that I have a small compression fracture in my spine from my slip in the shower a few months ago!

And as I found out yesterday after my CT scans- Doxil was an epic FAIL. Three months of suffering and wondering daily if all of this was worth it when you know that the end in site from this will always be “MY END” and this medication did nothing. Did not touch the cancer. IV chemo that was supposed to rock my cancer did nothing. I have two new liver lesions, a new tumor on my sacrum and two of my existing liver tumors grew. A lot of pain and suffering for nothing. To say that I am frustrated, disappointed and terrified would be an understatement.

As usual, my amazing doctor and her team, have a plan. A new trial that just opened up on Friday (yes, three days ago) is available to me and I fit perfectly into the parameters for the trial. I have to try to remain hopeful and have faith that the fact that this trial opened a couple of days before I needed a miracle means that it is meant for me and that hopefully this treatment is “the one”. It is a new IV chemo mixed with some other targeted therapies and hopefully it is the shock that my cancer needs.

I desperately need a win here with this disease. The last couple of years have been so hard. I am thankful for the time that I have been given but it is not enough. I want more, I need more and quite frankly I feel that I deserve more.

The summer is winding down and it sure has been a whirlwind. Between a super rainy July and never ending dealings with cancer, I feel like the summer flew by for the Cabral family. We welcomed our little Ollie to the family the day after school let out and we love him to pieces. We are especially grateful for the loving distraction that he gave to all of us through these trying few months.

My scans in June showed progression so I knew that IV chemo was next up for me. First though, I needed to deal with the excruciating pain in my leg/back caused from a tumor on my L5 that was now pressing on my nerve. I had been dealing with this pain form months but was terrified of radiation and tried to hold off as long as I could. Well the time came where I could hold off no longer since the next step would be that I would lose all feeling in my leg and at that point it is hard to reverse.

I started the 10 consecutive days of radiation at the end of June. Much to my surprise radiation (at least my radiation) was a piece of cake. It doesn’t hurt and the technology behind it is amazing. The hardest part for me was laying down flat on the table for the 20 minute session. Around round 5, I was in excruciating pain after the treatment. Apparently this was normal and called a pain “flare up”! Fun! I complete the radiation and started to feel better pretty quickly. I still had some tingling in my legs but the pain had eased up almost completely. Until…….I slipped and fell in the shower! Landing right on my ass and putting pressure right on the area that was just radiated. At first I though I came through unscathed but as the days pressed on I now know I was not so lucky. I had a total of about a week and half of relief and now my leg hurts more than ever. Not constant but the sharp pain that radiates down my leg and back is an unwelcome surprise. I saw the radiation doctor on Monday and will have an MRI next week to see if I have a compression fracture in my spine or if there is something else going on. Plans for both instances have been discussed.

In the midst of dealing with this pain, I reported to DFCI on July 14th to start my new IV chemo Doxil. I went in alone as I was told this infusion should be pretty standard and relatively easy. Well we all now that I strive to be out of the norm 🙂 so this appointment was anything but easy. We were less than 60 seconds of the infusion and my nurse Megan and I were discussing how fun Santa’s Village when I suddenly started to feel funny. At first I had a weird pain in my stomach and then felt like I was burning up. Megan stopped the infusion and let me know I was having an allergic reaction. After that things moved pretty quickly. I remember not being able to breath and begging the nurses to not let me die. Then I passed out (I think) or lost consciousness. When I woke, there were three people in the room trying to help me and get me to focus on breathing then I was out again. When I woke the next time there were 20+ people cramming into my room and all I could make out was the head emergency Dr who was yelling out how to help me. I remember at one point someone yelling “call 911” (DFCI does not have an emergency department so believe it or not an ambulance would have to come and get me and transfer me to the ER next door at Brigham and Women’s) then I head give her EPI. I remember screaming as the pen was pushed into my leg. Then my heart rate spiked and blood pressure dropped. I don’t remember much after that. I must have rebounded ok bc I was not transferred to the ER and was able to recover at DFCI. While I slept my nurse called Trevor to let him know what happened and also tell him that he would need to come and get me. I am so thankful for my parents and sister Sandy. They jumped into action when Trevor called them for help and within seconds had a plan for the kids, dog and to get Trevor into Boston. No questions asked, no discussion. Just helped us out quickly when we most needed it. I am forever grateful and thankful.

Now what, right? Well I was given the option to give up on this med and move to the next one. The next med would definitely make me lose my hair and my quality of life would be drastically changed. I am not ready for that and also do not think that I am at the liberty to pass up on a perfectly good med, so I asked if there was any way we could try Doxil again. There is- through a process called desensitization. I met with the allergist who confirmed that I was a good candidate and we got set up to received the medicine through this new process. There is only one team that deals with this in the whole DFCI network. I was lucky to get an appt and I started on July 29th. I had my second dose yesterday. They mix the medicine in different way and give me the infusion over 7 hours rather than the normal one hour. I get my vitals checked every hour and am watched very closely in case there is a reaction. So far so good. While the long day is tough and the fact that I can no longer bring myself is challenging, I am thankful that right now I am able to receive this medicine. A couple more cycles and I will scans to see if the medicine is working.

It’s funny because when the radiation doctor read my chart the other day and all that I have been through in the past couple of months he said “You just don’t like to be boring huh?” I chuckled. Never boring but I wish I was boring when it comes to cancer. I wish it could just be a little bit easier for me because I am very tired now from it all.

We have managed to fit in a quick getaway to the Cape, many pool days and some other fun activities this summer. The kids and I are looking forward to the new school year and are hoping we can navigate everyone’s extremely busy schedules with ease.

The truth is this whole life with cancer is a nightmare. Everyday there is something new to deal with. Everyday that I wake up, while thankful for another day, I pray and hope to have many more knowing that my days are numbered.

On Monday, I went in for my routine scans. As many know, I did not get the news that I had hoped for and the cancer in my liver continues to progress. My largest liver lesion grew from my scans in April and three new pesky lesions popped up. This boggles my mind because, I feel ok. While this news devastates me, I am not all that surprised. Again my rising tumor markers had me suspecting that these scans were not going to be in my favor. It has been decided that I need to move on to IV chemo therapy, specifically one called Doxil. My medical team has said that this particular chemo will come with side effects that are similar to the oral chemo I was on and that typically, people on this medicine do not lose their hair. We are hopeful that since my body and my cancer have never been exposed to IV chemo and its power that this will work well for me……….but we have heard this before. Someone at the doctor’s office asked me how I felt about this medicine and what my thoughts were. My response was “What Choice do I have”? “Take the IV Chemo or die” I guess I’ll have to take the IV chemo.

The truth behind Metastatic Breast Cancer is that you take stabs in the dark and hope that your cancer reacts to something to buy you more time in hopes that something else for treatment comes along. There are only so many options though. Choosing the treatments is sort of like a chess games. You choose treatment and it knocks out three other options in its class. Then when that line of treatment stops working you move up the line until there is no where else to go and the game is OVER. Well so far, I have knocked out Hormone Therapy, Immunotherapy, and Oral Chemo. Leaving behind the only option left- IV Chemo. There are many different options in this IV Chemo class though, so I am told. All in hopes that some miracle treatment comes along before it is too late.

While dealing with this news that my liver has progressed, I have also been dealing with some significant leg pain. What started as some numbness and tingling in my leg has progressed to terrible pain. I had an MRI that shows that the lesion/tumor on the L5 of my spine has also grown and is now pressing down on my nerve. Thus the current need for radiation. I went in on Tuesday for the “mapping” for my treatments and received my radiation tattoos. I will start my ten rounds of radiation on Monday wrapping them up on July 12th and will have my first chemo infusion on July 14th.

Right now I am terrified, sad and mostly angry. I am angry that this is what has become of my life. I am angry that this is the life that my kids and my husband have to deal with. I am angry that I feel like I cannot catch a break. I am also very tired. Tired in all senses of the word. Dealing with news like this over and over again exhausts one in way that cannot be described. It has been 5 long years of dealing with this and I am tired of it all. I can only thank Quinn and Colin for giving me the will to keep up with this fight.

I thank everyone that has reached out and offered help. We always appreciate it. Right now, I am a little overwhelmed in many many ways. I feel like I am running out of options. This is my 6th line of treatment and my 5th in the last TWO years!!! Very scary in my world. All while looking and seeming “Normal”. I find that a lot of times when I am telling someone what is going on, I tell my story or situation in a way that will make whomever I am speaking to feel a little bit better about the situation. Or when someone comes with me to my appointments- it is natural for me to want to take care of, chat with and make the other person more comfortable with what is going on. This is why I prefer to go to my appointments alone. It is easier for me. I can let out what I am feeling at that moment without worrying about worrying someone else. The truth is that on appointment days like the one I just had, I sit in my car in the parking garage and cry for about 20 minutes. Then I make the drive home- sometimes screaming, sometimes crying and then when I am just about home, I pull over- typically at a Dunkin Donuts- and I pull myself together so that when I walk in my door the kids cannot sense how dire the situation is and what has gone on with me that day.

Bottom line- right now- this cancer journey has me feeling weighed down and somewhat defeated. But I will do what I always do- put on my big girl pants and move forward. Put my faith in God, my doctors and these treatments to give me some more time.

XO

On April 16, 2016, I walked into Charlton Memorial hospital for a mammogram. Five days after my 35th birthday. I had a 5 year old who I had just taken for her kindergarten screening and a two year old running around in diapers. We had just listed our starter home and were preparing to move into our forever home. My life, that I had worked so hard for, was right where I had wanted it to be. I remember going to that mammogram appointment alone thinking that it would be no big deal. That they would tell me the lump in my arm pit was nothing. I even remember making plans to stop at the brand new Sonic in town after to see what the fuss was about. I never in my wildest dream thought that I would have the mammogram, be taken across the hall for an ultrasound and then be taken to a private room to be told that they suspect that I had breast cancer and that I needed to be referred to a breast cancer specialist. The next ten days were a blur and the life that I worked so hard on building was “destroyed” in a matter of minutes. As we all know, my breast cancer was a beast that spread through my body so quickly making me a Stage IV Cancer patient, a lifer.

Last week I was fortunate enough to turn 40. Something that in all honesty I was not sure that I would ever accomplish. Turning 40, five years ago was something that I only had a 22% chance of doing. The chances of me seeing 45 is only 17%. I am so incredibly thankful for the time I have gotten so far and it is not lost on me that it is a huge success to live 5 years with this disease. I also understand that I have made it this far and my situation can change and become dire very quickly. This disease is a beast. It ruins lives, families and futures. A great friend of mine sent me a Ted Talk recently to listen to. This episode hit home in so many ways (I will link below if interested in listening). One of the quotes that stuck out to me is ” We are all one breath away from a situation that can destroy our lives.” This disease has destroyed our lives in so many ways.

Living with a terminal disease makes you look at life a little differently. Over the past five years I have learned so much. I have learned that I cannot control everything. This was a tough one for the control freak in me but those close to me know that my new favorite saying is “It is what it is”. I didn’t do anything to get this cancer. God didn’t give it to me as a punishment. It happened and there is not too much I can do about it. I take the medicine, I endure the treatments and I LIVE the hell out of every single day and pray that I get to live to see another one.

I have learned that I have a strength within that I could never imagine. There is NOTHING easy about this disease and the treatments. I know that so far I have had it a little easier than others but trust me this is no walk in the park. On the days where I think I can’t take much more something or someone happens to give me that push to keep it moving (whether they realize it or not). It’s funny b/c some of the strongest, most appreciative and humble people I have ever met are the other cancer fighters I have been fortunate to know. They live or lived with such grace and a simple appreciativeness of what lays right before them. One day at a time. Relishing in the moments. Every single little moment.

I have learned to realize who is in your tribe and hold them close. We would not have been able to make it through the last five years without our “people”. There are so many of you. We have been blessed to be shown the TRUE meaning of family and friendship through this situation. I am so thankful that my kids are able to see and feel this. The kindness, generosity and love that we have been shown (and I hope that we show others) has been incredible and so amazingly appreciated. Sometimes it is hard for me to keep up with and express how genuinely thankful I am for so many.

I am so extremely thankful that I have been able to raise my kids for the past five years and create so many memories with them. I remember the first words that came out of my mouth when told my diagnosis. “What about my kids? I won’t be able to bring them to school?” I vaguely remember the Dr. telling me that I am not dying right away, I will be able to bring them to school. Such a silly thing for me to think of in my highly medicated state. I think of this often when I sit in the school drop off and pick up line daily. Something so simple to many, but so meaningful to me.

I am not sure how much time I have left fighting this disease. I do know that right now, the scans I had last week show that this medicine is keeping the cancer contained. I am thankful for this because this medicine has been pretty tolerable for me. I chuckle when I type this because my pretty tolerable side effects would bring some to their knees! I plug on living one doctors appointment, one scan, one chemo cycle to the next. Each time hoping and praying that I will get to live another five years and that one day I will be writing a blog post titled “Still Here….. Ten Years Later”.

Thank you so much for being on this journey with us for the last five years.

Shortly after I was diagnosed with Metastatic Breast Cancer, my friend Kristin put me in contact with a woman that she had grown up with who had also been recently diagnosed. Sarah was a woman who grew up in Dighton, the town next to where I live. She accepted my emails graciously and became somewhat of my cancer mentor. She had been diagnosed six months ahead of me, was on the exact same medical regimen as I was and though we had never met, gave me so much clarity and hope in the early days of my diagnosis. Throughout the past five years we stayed in touch via email and FB and kept tabs on each others lives with cancer. I admired how she lived her life the past five years. To the fullest. Sarah’s cancer battle became very difficult towards the end of the year. She happened to be in MA in December and I was lucky enough to come face to face with my dear friend for the first and last time all in one day. No words needed to be exchanged as we had a bond that only one going through this battle would understand. Sarah unfortunately lost her battle on New Years Eve.

Her loss, much like the loss of my other three Metastatic Sisters/friends that I lost in 2020 shook me to the core. My cancer had progressed years before Sarah’s had so for her to pass so quickly was heartbreaking. I started off the new year in a funk….for lack of a better word. I was mentally not in a great place. Terrified, angry, sad. I had also not been feeling my best. I had been doing so well on my medicine that my dr decided to increase my dose a little at a time to test what I could tolerate. Well we found very quickly where my limit was. I had debilitating headaches and extreme fatigue while on the increased dose. Headaches like I had never experienced before. Causing me to be convinced that this beast of a cancer had probably spread to my brain (it has not). My first appointment of the year on January 5th brought forth a mixed bag of info. Great lab work showing that my body was tolerating this medicine well but a significant (in my book) jump in my tumor marker. With scans scheduled for three weeks away we decided to lower my dose back to where it was tolerable and get another cycle of the chemo in before my scans. The headaches are fewer and not as painful as before!

I left that appointment on January 5th, somewhat tortured. Fearful and convinced that my time was coming where this disease was going to start winning. I looked into planning my funeral. Can you imagine planning your funeral at 39? I cry as I type this because it is so very sad. After some thought, guidance and time, I have decided not to plan my funeral. Instead to plan happy things, make memories and to start fulfilling some things that I have talked about and wanted all of my life. I am going to take the next year or so and live like I am dying. Live my life to the fullest and then if I get more time, well what a gift I will have been given. Now, I just have to get the Covid vaccine so we can start!!

I had my first scans of 2021 and on this new medicine last week. Thankfully, they were good! No shrinkage in my tumors but also no growth. While I always prefer to hear the words “Your tumors have shrunk” my oncologist has assured me that the fact that the tumors have not grown is wonderful and more important. She also feels that since I am feeling pretty good and my labs look good I now only have to go into Boston every 6 weeks for labs and to be seen. Great news. Although I have to say, I had grown quite accustomed to being at Dana Farber weekly and miss seeing my friends/nurses so frequently.

At this time last year, I had been told that my cancer was growing quickly and that I needed to move my treatment to Chemo. I am thankful and happy that so far, although it got off to a little bit of a rocky start, 2021 is looking better and I continue to hope that it will be a great year ahead.

“What was the most important thing you did this past year?” “SURVIVE!”

I came across this saying a couple of years ago and had posted it on my social media at the end of the year. Truer words have never been spoken when it has come down to 2020. Some days I didn’t think I would make it, some days I felt I wasn’t enough, some days were tougher than others. But somehow, we made it. Another year in the books. 365 more days of life given to us. For that we should ALL feel proud and thankful.

At the beginning of 2020, I found out that I was going to have to start chemo. I was terrified. Since 2016, I had been on hormone therapies that had controlled the cancer and now those therapies were no longer working and we needed to bring in the “big guns”- Chemo. In the stage 4 cancer world, we know that once you are on chemo there is no going back. You don’t ever come off of it. You can change types etc. but you will now be on chemo forever. And chemo is no joke. It is poison. Poison that kills or attempts to kill the cancer but also damages other parts of your body at the same time. It makes you feel horrible some days and fine others and you really never know what you are going to get. I wake up every morning wondering what today will bring in terms of how I will feel.

I remember at the end of 2019, I decided that 2020 would be my year! I booked trips. I made plans. I was going to swim with dolphins in the Bahamas with my kids, visit my friend in Portugal, go on a girls vacation, lots of concerts and many other things. I was going to live life to the fullest. Well as they say “when you make plans, god laughs”. Because we all know how “my year” turned out. No trips, no visits with friends, no concerts. Trust me, I am not going to say 2021 will be my year out loud b/c I know we all need a break and I don’t want to curse it.

So… while it was a hard year. Probably one of the hardest for many, so many good things came out of it as well. We made memories at home. Memories that are sometimes the most important. Simple things; camp outs, hide and seek in the yard, baking together, bike rides. Memories I know my kids will never forget.

There were many days that I thought remote schooling would be the end of me. Days that I would close myself in the laundry room sobbing b/c I felt like such a bad mother b/c it was all too hard and too much to juggle. But when I look back on it and I see how resilient my kids are and how well they have been doing in school, I could not be prouder. Watching them bounce back and more importantly be there for each other has brought me so much peace.

I have never felt sicker than I have this past year and it has not been easy. My cancer progressed twice this year and I am currently on my third treatment of the year. Today though I am feeling pretty good. The medicine I am currently on is tolerable so far and we move forward and wait to see if it continues being tolerable and if the medicine is working. I have lost friends this year to this disease and have watched other friends struggle with their treatments and progression. It is terrifying to watch people you care about go through these terrible moments and know that one day it will be your turn. Through these tough moments I have also felt the power and the love that my Metastatic community provides to me. I have also felt the continued love and support that we receive from our friends, family and community.

I wish everyone a very Merry Christmas and may 2021 bring great things and some normalcy to everyone.

XO

This past week has been crazy in so many ways. We experienced a crazy election, a new WOMAN Vice President (all politics aside this was amazing to watch with my daughter), had the weather change from 30 degrees one weekend to 80 degrees the next, I experienced my first earthquake in MA, and this past week I also learned that the current treatment that I am on has stopped working. The larger of the tumors in my liver has now doubled in size in the past six weeks. I was not completely shocked by this news, heartbroken but not shocked. I’ve always been pretty intuitive in regards to what’s going on in my body and I somehow just knew. I also joked that the last round of chemo, three weeks ago, was by far my best one yet. Easy-No. But better and more tolerable than the rest. So naturally it only made sense that this would mean the medicine was no longer working. My doctors and I always joke that if there is a slim chance of something happening or small percentage of a side effect it will happen to me.

I’m not quite sure why this is my fate. Why my husband will most likely be a widow in his 40’s. Why my kids will grow up without their mom. Not quite sure at all. It pisses me off more than anything and it is so unfair. I listen all the time to complaints that others make every single day over things that are so small in reality. I try my best to understand because everyone’s “Stuff” is important but in all honesty I am over dealing with my “stuff” because it is really big stuff. I try to remain hopeful that I will be an outlier and live with this for years to come but I am a realist and I know that the chances are slim. I have been lucky enough to live and live well with this disease for almost five years. Not a lot of other women in my situation can say the same.

This is a hard life. Not only does your world come crashing down when you are diagnosed, but each time you are on a treatment and that treatment stops working your world comes crashing down again. The crash gets harder each time because you know you are getting closer to that line where there may be no more options. You try to live each day to the fullest and try to squeeze in a lifetime into whatever time you have left. Something made so hard to do with Covid. We lost out on almost a year of memories, trips, visits with friends and family. This time lost was time I will NEVER get back. I am not sure what comes next for me. I go back in to DFCI on Wednesday to meet with my oncologist and see what is out there for me and what options we have. The funny thing is that I feel good physically. Mentally, I am in tough shape right now. But physically I feel great. Cancer is so fucked up.