Walking a Tight Rope

Lately in my dreams and even in my day dreams, I see myself often walking on a tight rope. I think this is a great way to describe how I feel about my life lately. Bobbling along this path of life, taking one step closer to death and then a step back closer to “normalcy”, all while feeling that I could just “fall off” at any moment (if this makes any sense). About six weeks ago I was told what my life expectancy looks like. For the first time since diagnosis, my expectancy was measured in months versus years. I was told to get my affairs in order, make sure Trevor had all of my passwords and that if there was anything I wanted to do, then make sure I do it. I struggled with this last one because in reality all I WANT TO DO is LIVE. I want to be here with my kids throughout their lives. I would trade anything for that.

I am so saddened at what my life has come to because of this disease. I always was a hard worker and did so many things. Now the smallest task takes a lot out of me. I am trying to organize my life in a way that will be easier for Trevor to navigate in my absence. Trying to set my kids up so that it will be easier on them when I am gone and so that they will have the support system around them that they will need. Getting the house in order and getting rid of all of the extra things that aren’t needed. It is sad. Sad to try to prepare a life that doesn’t involve you.

I started my new medicine, Erubilin, about six weeks ago. The actual drug is only a two minute push into my port. When I started the med, I tried the scalp cooling in an effort to save my hair. It didn’t work as most know and now I am rocking a bald head. It’s funny b/c for the past 6 1/2 years, one of my biggest fears was being bald. I actually chose medications based on whether I would lose my hair or not. I am not sad about being bald. I am actually having some fun with it! I was so nervous to shave my head b/c I was nervous for the kids and how they would react. My social worker suggested asking the kids to help me do it. Initially, they both said that they did not want to help. Quinn then changed her mind and said she wanted to do it- proving to me once again that she is tougher than I give her credit for. Colin wanted nothing to do with it. On a Friday night, Quinn and I got started. We laugher as she cut chunks of hair off of my head and then Trevor and Colin joined us. Each of them cutting pieces- laughing at my mohawk and then Trevor had the hard job of shaving my head and cleaning it all up- nothing a husband should ever have to do for their wife.

My recent bloodwork has shown that this medicine is possibly working on my cancer. As my dr says, “we celebrate this news until the next time we do bloodwork and it shows something different.” It’s hard to celebrate this news when I know what we are dealing with. There is no cure, there is no fixing this or coming out of it. Death is the end result of this……now we just hope that we can delay that outcome for as long as we can.

What is Life?

“How can you enjoy life if you spend every minute fearing the end of it?”

This sentence was in a book I just started reading and I felt that it was the perfect way to describe my life lately. My cancer has always held the sand timer over my head since the day I was diagnosed. The first few years the sand dripped down so slowly and then there was some progression to my liver and the sand sped up a bit. Well in the past year, the sand is falling down at an alarming rate.

In the past year, I have been on six different treatments that did not work. They wreaked havoc on my life and my body but they didn’t touch the cancer. The latest treatment, Taxol, that I have been on since June had it’s own lovely side effects. Taxol made me lose all of the hair on my body! While scalp cooling was great and saved a lot of the hair on my head, I do have huge bald spots all over. I no longer have any eye lashes and the only reason I have eyebrows is because I had them tattooed on earlier this year!

Throughout my time being treated with Taxol, my bloodwork would always point in the direction that this med was not working for me. I had scans last Friday which proved this. Unfortunately, my cancer has now exploded in my liver- creating innumerable liver lesions, I have some new spots in my spine, shoulder and femur. The cancer has also now taken up residence in my lungs. Not good news at all and some hard topics were covered in my appointment today. We are going to start a new chemo later on this week and I will really need a miracle that this med works and gets this cancer under control. I have not been feeling my best lately and it looks like I am on the path to just get worse if we cannot get this under control. Unfortunately, my journey has gotten very very tough now and the sand is starting to run out.

The Highs and Lows that Ebb and Flow

I went to my last post from May 13th and re-read it. It’s funny b/c this is my life, I live it daily; I experience all of the feelings and sometimes on a day like today, I can’t remember the terror and defeat that I felt a month ago. For some reason, I am able to tuck those sad and scary feelings into the back of my mind for a little while….until they poke their ugly heads out again, which they always do.

Since learning that my cancer continues to spread at an alarming rate in May, there have been so many highs to celebrate.

I travelled to Portugal with three of my greatest friends. A trip we have all been talking about for years. I felt amazing on this trip. Almost rejuvenated. Maybe it was the 14 hours of sleep I had on the first night there, maybe it was the much needed girl time and the break from mom and wife duties, maybe it was knowing that the chances of me making it back there are slim and I needed to soak it all in.

I witnessed Colin win his little league championship with his team- The Pirates. A group of kids that have been together for years and who my family have become fond of and have become close with their families. The energy of the crowd this night watching these kids and cheering them on was something for the books. A comment was made to me recently when discussing my illness with another mom in town. She said to me “This town will always take care of your kids.” This. This right here has stuck with me since the moment she said it!! I believe this to be true. I witness it daily through the people my kids are surrounded by in town- their teammates, their coaches, their friends, their teachers, the parents……so many people that I know will continue to cheer my kids on long after I am gone.

I was able to watch Quinn graduate from 5th grade. This was momentous to me for so many reasons. You see, 6 years ago, weeks after being diagnosed with terminal cancer, I sat in an auditorium and watched my 5 year old daughter walk across a stage in a cap and gown and graduate from pre-school. I sat in that auditorium and the tears streamed down my face because I wondered if this would be the only graduation ceremony of hers that I would ever attend. I made a goal to make it to her 5th grade graduation and in true April fashion, I did it!! Now my next goal is to make it to Colin’s!!

Both kids are now on summer break and we have a lot to look forward to. I am so proud of both of them. They do really well in school. They do really well in their activities- young soccer and cheerleading stars in the making! All while dealing with a very sick mom at home and all that comes with it. And while they drive me crazy like most kids do to their parents, they are really great kids (if I do say so myself).

While the highs are plenty, so are the lows unfortunately. I reported for chemo on June 1st. I was terrified, full of anxiety and really wondering if i wanted to do this. I kept saying to all of my nurses that I didn’t want to do this chemo- Taxol. I kept repeating over and over that I didn’t want to do. Said it so many times, that my NP said to me “April, you have the right to choose not to do it!” I love my NP and I looked at her and said, I am going to do it b/c quitting right now is not the choice for me. For some reason this exchange snapped me out of whatever chaos was happening in my mind and I said, I’m ready. So……I did it. My nurse helped me put the cold cap on my hair. The cold cap straps so tightly on your head and gets cold…….not just a little cold…..a severe and very uncomfortable cold. Thankfully, i only felt this discomfort for a few minutes b/c as soon as the IV Ativan and IV Benadryl (a wonderful combo) hit me, I was out like a light! The next thing I new my nurse and stepmother were telling me it was time to try to start waking up. I looked at them and they said you are all done and it all went great! HA! I slept through the whole thing!! In my opinion, the way to do chemo!!!!

Taxol for some reason felt like a turning point for me. Felt like the beginning of the end. Felt like the life as I knew it would be over and I would be so sick for the rest of my time. With hopes of not jinxing it, I have to say, I am pleasantly surprised with how “not bad” I feel. Do I feel amazing, NO. But……I don’t feel too bad!! Thankfully. I report to DFCI every Wednesday for treatment. 3 weeks in a row with a one week break in between so my body can recuperate! Ann (my stepmom) has been my partner in crime on this journey. We have a great little routine going for chemo days and she even spoils me when I ask to stop at Chic Fil A on the way home!!! So thankful for her!!

Happy Summer Everyone! Enjoy, Make memories, stop sweating the stupid stuff and LIVE your life to the fullest!

XO

Nurse Sandy setting me up in my cold cap.
Lots of ice on my head after the cold cap is removed!
The greatest nap! Thank you Ativan and Benadryl.

Life as I know it………

Life as I know it is about to change drastically. I found out this past Monday that my current treatment is no longer working and that un a couple of weeks I will need to move on to weekly IV chemo in hopes of getting this cancer under control. This will be treatment #10 for me, #5 in the last 11 months. I feel like my cancer journey has turned a corner that there is no coming back from. The coming days up until June 1st when I start my new treatment will be spent trying to enjoy the life as I know it. I feel in my heart, that I am a different person or at least now becoming one. I was asked this past week by my doctor what is important to me as we approach this phase of the journey. The only thing I can think of is Quinn and Colin. It is important to me to remain “myself” for as long as I can. I don’t want my kids to have to visit me in the hospital all the time and watch their once strong mother deteriorate before their eyes. I know this is what is going to happen and it breaks my heart that this will be their reality in the coming years.

Right now I feel sad, defeated and so so angry. Angry that this is my life. Angry that while having to deal with all of this, I still have to deal with the normal everyday BS that is life. I want a break, I need a break. I have tried to remain hopeful, have faith and believe that their is a miracle out their for me but honestly I don’t really think that is what is in the cards for me. I don’t get how I could walk around Universal Studios with my kids last week for almost 12 hours all while my liver is full of tumors. As I told my doctor this past week, if someone could guarantee me a set amount of time where I would feel good and be myself and then when that time came to an end I could take a magic pill to end it all I would. Also, as I told her there is no need for concern by this statement and no need to call the social worker. You try living one day in my shoes and tell me you won’t feel the same.

But as I have in the past, I will buckle up for this new ride. Get the chemo every week. Use the cold cap in hopes of preserving my hair and hope that this med gives me some more time. Sucks that while most people are thinking of their hopes and dreams for the future, I can only hope for a few more months of a really horrible and painful life. Just know that when you see me and I smile and say I’m fine, I am dying inside both literally and figuratively.

2,190 …………………..

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.

The Tough Stuff

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

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.

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