An Epic Fail

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.

Spending a lot of time lately in these machines.
Just a little blood needed. This was a light day for me too!

The fun never ends in Cancerland

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, My Truth

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

Still here…….

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.

Our family in 2016. 6 months after my diagnosis.
Our family, April 2021.

New Year, Same Fight

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.

2020…….

“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

What A Week

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.

Living Life……six weeks at a time

For the past four years I have tried to keep my cancer in the back of my life. Trying to remind myself that it is just something I have to deal with and not something that defines me. Lately, probably since I started on this new chemo trial, there has been a shift and my cancer is definitely in the forefront of everything. I have more appointments, more trips into Boston, more side effects and more scans.

Every six weeks I have to report into DFCI for scans. I receive a CT scan every six weeks and get a bone scan every 12. I get injected with radioactive dye and drink my CT contrast and then I get shoved into noisy machines that will tell me what my next six weeks will look like and what my cancer is doing inside of my body.

Luckily my last set of scans were stable. This means that there was no shrinkage in my tumors but that there was also no progression. So we are happy…I guess. I am thankful for this news but obviously wish that the tumors continue to shrink. So after these scans, I move on for six weeks; having my appointments and getting my treatment. Then on September 23rd I will get scanned again and the next six weeks of my life will be determined. Will I remain stable and get to proceed for another six weeks or will this treatment have stopped working and I’ll have to have some changes made. It is a very vicious cycle.

It’s a funny thing when you are a “lifer” with this disease. You get to meet other “lifer’s” or as we like to call ourselves “Thriver’s”. You see each other frequently in the waiting rooms or you “meet” each other online in a support group. These women have become my lifeline with this disease. They share experiences, they understand exactly what I am going through, we all are fighting for the same reasons; our kids and spouses. It makes the time pass in waiting rooms when you get to chat and catch up with these friends. It also hurts so much when one is struggling with their own disease and runs out of treatment options. The past couple of weeks have been especially hard for me as I am struggling with the loss of two of my MBC sisters. Coincidentally both named Michelle. Both passing from this dreaded disease and leaving behind children that are the same ages as mine and husbands left to pick up the pieces. As much as I hate to say it, their deaths have made me think a lot of my own impending doom. I will one day run out of options as well. It is the nature of this beast. Who am I to think that I will be one of the ones who lives a very long time with this. I obviously hope I am but the reality is that the chances are very slim. This week I am scared. Scared of what my future holds. After speaking with my medical team yesterday, I have to try to separate myself from the struggles of others in my situation and focus on the fact that today my cancer is stable as no two cancers are the same. So very sad.

Here in our home we are doing ok. We managed to have a decent summer despite the quarantine and we are slowly coming out of isolation. We have started putting the kids back into their activities (for their sake and ours) and are opening up our “bubble” more. The kids will go back to school on the 14th and will phase in to being back to school in person for a couple of days per week. After many discussions with my doctors and our pediatrician we have made the decision to allow them to go back and feel it is the best decision for our family. We are hopeful and nervous all at the same time and are just taking it one day at a time. We hope that everyone has a healthy start to the new school year, whatever situation you find yourselves in.

XO

HI there

I just noticed that I haven’t posted here in a couple of months. Oops! You would think that being stuck in the house and in quarantine that one would have all the time in the world but in all honesty, the time has just flown by.

The Cabral family remains in a pretty tight lock down. We have seen a couple family members- from a distance and even ventured out to some stores for quick errands. We did try to go out to eat once to the Blount Clamshack (which is all outdoors)…..we’ll probably wait a while before trying that again!! Its hard for me b/c I see so many people returning back to normal and we just can’t. It is too dangerous. I am watching my white blood cell counts closely and factoring my decisions to venture out based on that so we are getting there and finding peace (or at least trying) in our new normal.

As I mentioned before, the two chemo’s I was on as part of this trial kicked my butt. I was so sick. Thankfully, I was allowed by the drug company conducting the trial to stay on the one non FDA approved chemo pill. After a couple of dose reductions because my white blood cells were non existent on the higher doses. I think we have found the magic cocktail!! I am happy to report that my scans last week were very good. So good in fact that it showed my liver tumors have shrunken 62% since I started this trial. The tumors in my bones have remained the same- which is also very good news!! The weekly appointments, new maintenance meds and the hell I have been through the past few months were all worth it. My hair, eyelashes and eyebrows are starting to grow back. I did not lose them completely but had some really attractive bald spots everywhere!!! And most important overall, I feel pretty good.

I am very thankful and hopeful. While I am optimistic, it is also not lost on me how quickly things can change when you are fighting this disease. Two of my closest MBC sisters and friends have been dealing with a lot and struggling with this disease and all of the nastiness that comes with it. One of these women became my friend when I was first diagnosed. While we never met she took the time to email with me and share her experience to help me navigate mine. We check in with each other often and she has always been there for great advice. The other woman is one who made me smile when I saw her in the DFCI waiting room. Her positive attitude about everything and the bright light around her always made the appointments feel easier. I pray for them daily and ask that you also keep them in your thoughts.

Since being stuck at home so much, I have taken the time to get organized. Not only in daily life but in case for when my “shit hits the fan”. I don’t think Trevor appreciated the book I have been organizing for him titled” I’m DEAD, now what”! Not sure if it was sensitive nature or the fact that I’ll still be bossing him around from my grave!!!!

Hope everyone is enjoying their summer, making memories with the ones you love and staying safe. Hopefully, we will break free of our home prison and see some of you soon!!

XO

It’s OK…..to not be OK

I’m fine. Doing great. Being diagnosed with terminal cancer you have no choice but to stay positive and tell yourself (and everyone else) that you are fine b/c honestly what good does it do to be sad and show how you are really feeling all the time. I make one hell of an actress don’t I!!

I can tell you that right now, today, this week, the past 8 weeks- I am struggling. Struggling with the working from home, the home schooling, the stress of so many unknowns and on top of it all, my new life as someone on Chemo. Chemo has not been easy for me. My first round I was only able to take the pills for three days before becoming too sick. The second round, i powered through, completed the pills and almost ended up in the hospital from being so sick. My third round I only was able to take the pills for a week before becoming too sick. After this, my medical team decided that in an effort to only kill the cancer and not the host, my treatment needed some tweaking. After getting the approval from the trial drug company I have been allowed to come off of the take at home chemo pills and stay on the hospital administered chemo pills alone. Something the trial would not usually permit but one of the good things to come out of this Covid pandemic. I took the pills two weeks ago and had minimal side effects with the exception of becoming neutropenic (little to no white blood cells) and the scans I had done a couple of days ago show that the treatment IS WORKING! My liver tumors continue to shrink and there are no new lesions in my bones. Great news and I am hopeful that I can continue on this path. It is not easy, but I am trying to have faith that all of the pain and suffering i have endured will be well worth it.

This time of year is tough for me. My birthday is always hard b/c i am not sure how many more I will have. Mother’s Day is really rough because my mind always goes to the place where I know one day my kids will only have me as a memory on Mother’s Day. I was diagnosed four years ago as of the end of April. The statistics still read that there is only a 22% chance of someone surviving this disease for 5 years. These stats are not good enough for me and I can only continue to hope and pray that I will be one of the ones who beats the odds.

We continue to shelter at home except for the occasional drive to get fresh air and a change of scenery. We have excepted that this new “normal” that we are all going through is just a little too much for us. We are changing the expectations that we have on ourselves at home and just trying to get through it in the healthiest and sanest way we can. Hope everyone out there is staying healthy and safe as well.

XO