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

So much time, so many thoughts…….

First and foremost, I hope that everyone is staying healthy, safe and somewhat sane during this crazy time. I also want to thank all of the people who are battling this virus front and center and those that are keeping the world running while most of are us staying in our homes.

The Cabral family is actually faring pretty well during this time. I have always been someone who keeps thing like toilet paper and paper towels overstocked on a regular basis so we are doing fine over here. Trevor is his usual panicky self and is making sure we are always washing our hands. I have been working hard for the past four years to make sure I don’t get sick so I am doing fine as well. The kids have been great. They obviously have their normal kid moments but for the most part during the week when Trevor and I are both working they do their best to be well behaved and quiet. They do demand our full attention and entertainment on the weekends though.

My first round of chemo did not go well. The meds made me terribly sick and i had to be taken off of them after only four days. It took my body a few weeks to recover and for all of my blood counts to be good enough to start again. I started my second round of chemo, at a reduced dosage, on March 11th, just as the Corona Virus chaos was starting to kick off. While I felt better than I did on the first round it was still really tough and I felt horrible. If there was a side effect listed as being possible- I had it. I am losing my hair (something that no one else on these meds had happen to them), had terrible,terrible GI issues and had blisters on my hands and feet. Being the stubborn (and somewhat stupid) person that I am, I powered through my horrible, near death feelings and continued on the meds so that I could complete the round. Apparently this was a HUGE no no as I “got in trouble” with my oncologist as I allowed myself to get too sick. As she put it “They do not give prizes to people who power through horrible side effects.” Essentially I am putting poison in my body daily and too much poison could “kill the host not just the Cancer”. I get it now and will never make that mistake again!!!!

I was thankful to be home during that time. It was tough but it was nice to be able to be sick and not have to go anywhere. Practices, stores, events, etc. Trust me I didn’t feel this way while going through it at the time. A couple of weeks ago, when feeling my worst, and quarantined- I was ready to throw in the towel and for the first time really questioned if I had much more fight in me. Having Cancer is not easy and with so many unknowns around us during this crazy time, it was all a little bit too much. I am feeling better now and have a more positive outlook on everything and am ready to start round three (at another reduced dose) tomorrow.

While this is such a trying time for everyone and we are all fighting our own battles with this new norm, I am thankful for this time. Thankful for the quiet, slowed down version of our life which we are quickly becoming accustomed too. I have always kept our schedules packed in hopes it takes our mind off of my Cancer and keeps us busy and making so many memories. With this slowed down life we are making more memories than I could have ever imagined. Doing the puzzles and playing the games that have been in closets for years, mommy becoming (or at least trying to become) a kindergarten and third grade teacher, ( GOD BLESS all teachers!!!!) , making Tik Toks as a family, google chats with friends and family. It’s funny b/c during this quarantine i have spoken to friends and family more in the past few weeks than ever before.

As always, we have been overwhelmed with the outpouring of care, concern and offers of help that have been extended to us. I am so thankful, now more than ever, to have so many loving and caring people in my life. I can only hope that I can. have or will be able to reciprocate the love to all of you. I hope that everyone stays safe and healthy.

XO

***** I also originally forgot to share that while i have been sick from the Chemo, it IS WORKING. My scans a couple of weeks ago showed that the tumors in my liver had shrunk from the medicine. The goal is to now find a dose that I can tolerate and still have it attack the Cancer.

Chemo and the Corona Virus

I started my new Chemo regimen on February 19th. Accompanied by my friend Lauren, we started our day at DFCI around 11 and did not leave until close to 7 pm. Very long day. I started a new trial consisting of a non-approved drug called Tesataxol. This is a pill form of a common IV chemo Taxol which is said to have less harsh side effects. I also take Xeloda which is also chemo in pill form that can be taken at home for two weeks on and then you get a break for one week. As is standard in trials, you are started off on the maximum dosage. This dosage proved to be way too toxic for me as two days into the meds, i was so so sick. Nauseous, vomiting, couldn’t eat, slight fevers, sleeping constantly and basically stayed in bed or on the couch for five days. I continued the meds in hopes that the side effects would subside. They did not and the doctors had me stop the meds only 5 days in. I started to feel better but was neutropenic- meaning that I had a very low white blood cell count. This was the first time in all of my treatments that I felt this sick. I started round two of these meds yesterday at a reduced dosage in hopes that the the meds will be kinder to me and my body can tolerate it more. I hope and pray that i can tolerate this better because, I really need a win here with this disease. I have been on four different treatment regimens and my life literally depends on finding something that will work.

For some reason, i had a very tough day at DFCI yesterday in regards to my emotions. It could be b/c every time i do in to the doctors there is always a new issue. One week its low white blood cells and this week it was heightened liver enzymes. It could have been because it was my favorite nurse practioner is leaving the practice and yesterday was my last visit with her. It could be because these weekly visits are becoming exhausting for me. It could be b/c my hair is falling out in large clumps even though I was told that i would not lose my hair (we are hopeful this is temporary). I could be all of the talk about the Corona virus is triggering me in some ways.

Trust me I understand more than most the severity of this situation with this virus. I am in the category of people who this virus is most dangerous for- those with compromised immune systems. I also know that for the past four years my family and I have had to make new habits b/c of my disease- always sanitizing and hand washing. Thankfully b/c of this I have a stockpile of hand soap and sanitizer! I get that this virus is new and there are so many unknowns and very limited resources in regards to it but i wish that Cancer and Metastatic Breast Cancer got awareness and attention like this and it really ticks me off.

While we have been going through probably the toughest time this past month or so with me being so sick, the outpouring of support has been tremendous. Our hearts and our fridge have remained full throughout and i cannot thank everyone enough. It means the world to me and my family and it makes me feel so amazing to feel so much love. It definitely helps me on the days that i feel my lowest and gives me the push i need to keep moving forward.

Tough day yesterday.
Just a little hair loss.

It Is What It Is

I find myself saying this a lot lately “It is what is is”. I also heard another cancer fighter say the same thing today and it pissed me off. This is where we are in this life with terminal cancer. Honestly, it is the truth. It is what it is and we have very little control over it. I am a prisoner to this cancer. In my cancer riddled body. Cancer has stolen so much from me. My freedom in some ways, my future in many ways, my hopes and dreams. I have become my cancer. Many of the things I do are based on and off of my disease and I am very over it. As you all know we learned my cancer had spread in November and I entered a new trial in December. The month of December was so tough for me. Many side effects and lots of pain from the new treatment. I got through it and through a dose reduction started to feel “fine” on the new meds for the month of January.

I was scanned on January 30th and found out this week that the past trial did not work. At all. My current liver spots grew and two more have popped up. There are also suspicious spots now in my lungs that will be watched. 2019 was such a hard year for me with this disease and I was really hoping that 2020 was going to be easier for me. This will not be my reality. I am now switching over to chemotherapy in a couple of weeks. We will attempt to hit the cancer with a “double whammy” and be very aggressive to try to get this under control. I will enter into a new trial that involves two chemotherapy pills. One that is not FDA approved yet and has to be administered at the hospital and one that i will take at home. They come with there own new side effects and lots of additional doctor’s appointments.

I am terrified. I am sad. I think everyday what I could have done to deserve this. I am struggling to remain positive and have hope. I do know that having your health is something that should never be taken for granted.

Christmas Wishes

Starting off with the positive; we had an amazing trip to Aruba. It was the perfect trip and I felt better than I have in a really long time. We were able to make some amazing memories and are hopeful that we will make it back to island very soon.

Upon our return from the trip, I reported to Brigham and Women’s on December 4th for my liver biopsy. I was prepped and ready to be wheeled into the procedure room when my medical team called to let me know that my liver enzymes were too high to have the procedure done that day and that I needed to go home. My oncologist called me later in the day to discuss and we reviewed that the cancerous spots in my spine are larger than they were before, there are new cancerous spots on my ribs and as we knew there was a new spot on my liver. Basically, my “slow growing” cancer became more aggressive in the past few months. We decided to try to give my liver a few more days in hopes that the enzymes would normalize. I went back in on Monday and they were still to high.  I then went back in again on Wednesday and my enzymes- while still higher than normal, were within the parameters needed for the biopsy and the trial.

I was to have what should have been a routine liver biopsy- normally a 45 minute procedure. Due to different complications during the procedure, I was on the procedure table for 2 1/2 hours. The sedation and anesthetic provided to me during the procedure did not work resulting in me being aware of and feeling everything during the procedure. Very painful and traumatic. Also, proving me right as I had told the Dr in the beginning that if there are “possible” complications they usually happen to me.

I started the new treatment Wednesday evening. The new treatment includes shot every other week and six pills a day. This treatment so far has brought on some very intense and unpleasant side effects. I am hoping that I can get a handle on these side effects as I am not really sure how much more I can take of all of this.

This bringing me to my wishes for this Christmas:

I wish that 2020 brings me better health than this past year did.

I wish that this treatment works so that this will not be my last Christmas.

I wish that I did not have to worry or think about every holiday or vacation being my last.

I wish that my husband and kids did not have to deal with this.

I wish that I was strong enough to show people how I really am feeling rather than always putting on a brave face and pretending I am ok.

I wish that everyone who has showed us an overwhelming amount of support, knows how very thankful we are.

I wish all my fellow cancer fighters finds some sort of peace this holiday season.

I wish for more treatments and medications so that the list of options for me and others like me continues to grow.

I wish everyone a very Merry Christmas. Hoping everyone is filled with love and peace this holiday season. I wish Happiness and Health to all in the New Year.

XO

 

 

 

 

 

One Cell with a Suit of Armor

Is all it takes……one sneaky little cell. I have been on my current clinical trial since the end of February which involved a pill, shots and an immunotherapy infusion. Well the time has come for me to move on from this current treatment as we just discovered that there is a new cancerous spot on my liver that was not there before. My other tumors (bone and the original liver tumors) remain stable and reactive to this current treatment but one sneaky cell, with a suit of armor, as described by my brilliant oncologist managed to outsmart these meds and create this nuisance. I had a gut feeling that something was going on. My tumor markers have been rising and something inside prepared me for this news. I had done my own research on what my next options could be (something no cancer patient should ever do) and have spent the last week devastated about my options. I had prepared myself for one option that would make me very sick daily and then for another option where i would lose my hair. Both options terrified me and really pissed me off. SO when my oncologist came in and confidently had a plan that involved neither of my self researched treatments i felt relieved. I am so blessed to have the doctor that i do. She came in with confidence, options and reassurance that i would be OK. That this bump is not the end of my road. She is an amazing doctor with so much knowledge but she is also a kind person who takes into account what is important to me and my life.

So next i move on to another clinical trial. I will receive the same shots as i have been getting for the past nine months but a new drug- Verzenio- will be added to the mix. This is a new class of medication so we are hoping that this will kill/stop these cells from attacking my body. I have lots of appointments and testing in the next few weeks to prepare for this new trial but we will get started on December 4th. Here’s to hoping that this new trial will work wonders for me and that the new side effects will be manageable.

On top of all of the chaos that surrounds my cancer we lost our dear dog Buddy this past weekend. His death was not unexpected as he was almost thirteen years old and had been battling different medical issues for the past 6 year. We are taking it hard and our home is not the same without him. I remember the day that i was diagnosed with Stage IV cancer, i had to be given a sedative at the hospital and came home to sleep off the pain of my diagnosis. Buddy laid next to me for 5 hours, never barking or asking to go out to the bathroom- which was abnormal for him. He just laid there next to me, silently giving me so much love. He was the best, my very first child, and a part of our family. We will miss him terribly.

Trevor, the kids and I are taking off in a week or so to celebrate Thanksgiving in Aruba. We booked this trip last Spring after I had started on the immunotherapy trial. It is just fitting that it is now coming up after we received this news and are starting on a new trial. My family and I have never needed a vacation like we do now. I am so excited to relax, slow down and reconnect with the ones that i love the most.

Cancer Land

I am writing this post today from my infusion chair at Dana Farber. I realize that I have not posted much often and the only excuse that i have is life…. life is very busy right now as i am sure many parents are feeling. School, activities, events etc. are keeping our family very busy. So here is a brief recap of all that has been going on in our life and in our cancer land!

The 2019 Jimmy Fund walk took place on September 22nd. It was a hot day this year but we all did so well and the day was very successful. Every year that we sign up i wonder if people are sick of doing the walk, sick of the fundraising etc. and every year I am in awe of the people that support and come all the way into the city to walk and show support. We have raised over $23,000 this year and the donations are still coming in! Our total for the past four years is over $120,000 donated to Metastatic Breast Cancer research – we should all be very proud! Our team continues to grow and the love that is shown and felt is immeasurable. The song I used for this years slideshow was introduced to me by my friend Paul after he lost his mom to breast cancer. The title is “Fight on Fighter”. Perfect for me and all my fellow cancer fighters!!

A local company (out of Braintree) recently was looking for breast cancer patients to partner with them on a campaign that they were working on. I was lucky enough to be chosen as one of those patients! I recently met with the team at Oofos to hear what their mission was and why breast cancer research is so important to them. Oofos is a footwear company that “creates an incredibly comfortable shoe” geared towards runners and athletes for their recovery. I have several pairs of these shoes and they honestly feel like you are walking on clouds! One of their first employees was a woman named Duncan. Duncan was diagnosed with Metastatic Breast Cancer and was treated here at DFCI. Through her hard work, she and the team at Oofos created “Project Pink” where a portion of the sales of each shoe is donated to Breast Cancer Research!! Since April 2019 (6 months) , Oofos has donated $250,000 to breast cancer research. I truly enjoyed meeting everyone at Oofos a couple of weeks ago and sharing my story with them. I also enjoyed meeting the other patient partner, Sharon. It is amazing how nice it is to speak with other patients who just truly understand what you are going through. Check out their shoes at www.oofos.com

The month of October is always a little tough since it is breast cancer awareness month and this horrid disease is everywhere you turn. While tough, i am so thankful for the support i have seen not only this month but always. I feel that those close to me are feeling the need for more research towards a cure and how important it is to raise the funds for this research. Quinn’s cheerleading community hosted a “Pink it up Game” this past weekend complete with vendors, raffles and an amazingly yummy bake sale. A portion of the proceeds from this event are being donated to our Jimmy Fund Walk team! To see the cheerleaders wearing pink shirts with Cabral’s Crusaders on it was very heartwarming. I am so thankful to everyone that took part in, organized and ran the event. To know that my family is surrounded by so much support is amazing.

Behind the scenes, I am dealing with some things with my cancer. My tumor markers are rising and have been for the past few months. Could mean nothing, most likely means that this current line of treatment is no longer working for me. I will be scanned next week to determine what is going on and what the next steps are. So please say an extra prayer for good scan results.

Where I Live

It has been about four months since my last blog. I think about blog posts often and what i would like to share with whomever is reading this but have found this summer that my desire to share these things was just not there. We had a wonderful summer this year and made many, many memories as a family. I am very thankful for all these moments together- even the ones where the kids drove me crazy (please god let this be a phase!)

I currently live in a space where I am constantly tired. Tired, literally, as fatigue is one the main side effects of my treatment. It is an exhaustion that is so hard to describe and I feel myself slowing down a bit. Tired as well of it ALL. I am tired of being a patient. Tired of the treatments and tired of having to try to remain positive.

I live in a space where I met a woman yesterday in the waiting room who has been in treatment for 11 years. I completely understand that this is amazing but I honestly cannot fathom the idea of being in treatment all of the time for that long. Sometimes I wish that someone could tell me how much time i have left with this disease. At least I would be able to gauge how to spend the rest of the time. Do what means the most to me in the time I have left instead of pretending that i have a whole lifetime ahead of me.

I live in a space where I know that the treatment I am currently on is relatively “easy” and the treatments only get harder from here. I haven’t felt like myself or “normal” since 2016 and I am terrified of what is to come. I am part of groups online and on FB that is made up of so many woman in the same situation as me. There is not a day that goes by where there is not a post announcing the death of one of these women. It is terrifying.

As I have said before in past posts, the start of the school years feels like a refresh/reset button. We are starting new. The kids are off to 3rd grade and Kindergarten. Colin was only 2 when i was diagnosed and to watch him start Kindergarten this week was amazing to me. In the beginning of this journey I honestly never thought that I was going to be here to witness this moment and I thank God that I am. The kids are off and running and I am going to push reset on my outlook and attitude towards this whole situation that is my life.

How I feel during treatment
How I pretend to feel.
How I make myself feel better. DFCI Pizza in the car (best Pizza in Boston!)

The 2019 Jimmy Fund walk is two weeks away. To register or donate, please visit: http://danafarber.jimmyfund.org/goto/CabralsCrusaders

To Purchase the 2019 T-shirt, please visit: https://www.customink.com/g/xqy0-00by-yncd?pc=TXN-173480&utm_campaign=gof_org_open&utm_content=body_gof&utm_medium=email&utm_source=gof_org_txn

XO