Tuesday, April 1, 2014

We will never forget you......

           As we approach the first anniversary of Bridget's death, her family has decided to re-post her blog. We know that for many of her readers, the blog provided not only insight into how she was coping on the cancer journey, but also a sense of her quest for normalcy and her amazing joie de vivre in the face of fear and uncertainty.

         We are also taking this opportunity to make Bridget's readers aware of an incredible undertaking by the Pink Angels, a group of fundraisers who gave so much support over the years to the Boston 3Day. In Bridget's memory, the Pink Angels have instituted a fund whereby all proceeds will directly benefit the research being done by Bridget's oncologist, Dr. Ann Partridge, at the Dana Farber Cancer Institute. The fund, named The Bridget Spence Fund for Young Women with Breast Cancer, will channel proceeds to Dr. Partridge to be used as needed towards finding a cure for this awful disease which took Bridget's life at 29 years old.
           To find out more about The Bridget Spence Fund for Young Women with Breast Cancer, click on the link below, and follow the link to Bridget's page. We support the incredibly selfless work of the Pink Angels, and hope that you will also, in Bridget's memory.

www.thepinkangels.org 

Friday, April 5, 2013

Beauty

Bridget passed away before midnight last night in the loving embrace of her mother, husband, and Daisy (our beloved dog). I am heartbroken and do not have my wife's eloquence. In a few words, Bridget lived her life with unbridled passion and energy. One look from her beautiful blue eyes and you knew that she was with you in that moment. I am forever humbled by the time and love that we shared.

We ask that you allow family and close personal friends only to celebrate Bridget's life at her funeral. Your expressions of sympathy in Bridget's name would be most appreciated if they were directed toward either the Dana Farber Program for Young Women with Breast Cancer or Susan G. Komen for the Cure.

Bridget and I have been so blessed by the care and support of so many these past eight years. Fear, doubt, and pain have been replaced by courage, faith, and peace.


Wednesday, December 26, 2012

Right Place Right Time

Over the past six years of my cancer journey, I've never, thank god, been at a loss for luck. No doctor thought I'd make it this far, and I know deep down that I have each and every one of you to thank for getting me here. Never was my luck more on display than the morning after I awoke from 8 hour long surgery having a new Pleurx catheter placed in my chest. You made this technology possible, and this technology was keeping the cancer at bay in my heart. You were responsible for draining the cancerous fluid that was compounding in my lungs. You were helping me to take every single breath. With every breath I have each of you to thank.

My doctors needed your help too, and they received it. Each time my cancer was exposed to a new chemo drug, my cancer got smarter. Every time my cancer has gotten smarter, we've needed to find a new drug to combat it. The morning I received my Pleurx catheter, also happened to be the morning when I opened up the "Dana Farber Report" and saw this little news snippet.

"Susan G. Komen for the Cure grants $315,000 to Dr. Lein Chen for research into PI3K pathway." That Monday morning also happened to coincide with a visit from my doctor informing me that I had been selected for a clinical trial, a clinical trial looking into a new drug that would inhibit my cancer's ability to grow along a specific - PI3K pathway. Talk about right place at the right time!

Susan G. Komen was planning to go one step further with me though. Never one to stop in just one place, Komen wants to partner with me to help educate the public about clinical trials. Enrolling in this trial was not an easy decision. My life was put on hold and, while that seems like an obvious choice, it may not be an obvious choice for every patient. What are we fighting for? How long do we fight? How much money do we spend fighting? What does our life living and fighting with cancer look like?

To enroll in this clinical trial, I visited Dana Farber every single day, from 7am until 9pm. Over the ensuing six weeks, my cancer shrunk 12%. But then, two weeks before Thanksgiving, I found myself in an ambulance, headed to the hospital because of problems with my heart and lungs.  My body could no longer handle the clinical trial. I just couldn't do it.

The trial bought me time, and I was able to spend Thanksgiving and Christmas with my family and friends. But now, I face the reality that the battery of treatments can no longer keep my cancer at bay.

So now here we are. We have made it from Halloween, to Thanksgiving, and now we are celebrating Christmas. (The Big Man bought me a gorgeous diamond ring for Christmas!) Even as we celebrate, my year has, yet again, revolved around cancer. But I'm not complaining. I am thanking you. I thank each and every one of you for getting me here. I'm going to ask now for just one more favor.

It is time for me to ask each of you to let me go. It is time to say goodbye.

Over these past six weeks, my ability to breathe has been compromised. Every breath is a struggle. I cough all night and most days. I am exhausted. My mother and brothers have flown in to help.  I'd like to stop working and go enjoy a nice cold drink with my husband on a beach somewhere. I want some time alone with him. Time without doctors appointments and scans, without work, just the two of us. No PI3K pathways. No trials. No hospitals. Just Bridget and her Big Man.

So thank you. Thank you for fighting with me over these past six years. Thank you for hoping with me. Walking every step of the way alongside me. I couldn't have done this without you. I wouldn't still be here if it weren't for each and every one of you and the dollars you have raised in my name.

Please, don't forget about me.

Sunday, October 7, 2012

Matters of the Heart

People call me brave and strong and inspirational. Generally speaking, I don't believe these compliments. I am simply trying my best to live a normal life in the face of great adversity, and there are tens of thousands of other patients and caregivers doing the exact same thing every day all around the world. There are hundreds of my blog readers who are just as brave, strong, and inspirational - they simply choose to battle quietly.

Furthermore, I know that all of you who've not been touched by tragedy, when challenged, would behave much the same as I have done.

That said, this week I do feel awfully brave. I am proud of myself. This week I feel like a grown up. I am wearing my big girl pants.

It all started Labor Day weekend. I was having some girlfriends over for brunch and, like any hostess, was rushing around trying to get things in order. Everything had to be perfect, and I was down to the wire. I was rushing around hiding dog toys, putting away laundry, finishing a quiche, arranging flowers. Running these last minute errands, I was running up and down the stairs a lot, and I noticed I had to sit down and catch my breath after each trip upstairs. I felt weak and short of breath. I thought I was perhaps coming down with a flu.

Over the course of the next several weeks, the breathlessness got worse. Lying in bed at night, I would cough uncontrollably. Coughing would wake me up in the middle of the night and I could hear wheezing in my throat. I sounded like I was 90 years old. My dog looked at me with concern and sniffed my face after my coughing fits. Something was wrong.

Monday, September 17th I was due for my third infusion of this new drug cocktail - Herceptin, Docetaxol, and Pertuzumab, and we were getting wonderful news so far. This drug cocktail was working! Over the course of several weeks my tumor markers had fallen from 1,133 to 387 and from 8,813 to 2,762! I was optimistic and encouraged. I was losing my hair, I was coughing and wheezing and feeling sick, but all of this was totally worth it if it meant I was winning!

I expressed concern about my breathlessness to my doctor in the hopes that she would have some prescription medication she could give me to quell the cough. I had tried Vick's Vapo Rub, I had stood in a steaming shower and had taken eucalyptus baths. I was thinking of investing in a humidifier. Nothing had worked so far.

The cough that I thought was not a big deal, apparently could be a big deal, because the doctor got very serious, cancelled my Monday infusion, and booked me for a series of tests on my heart and lungs instead.
The next morning at 7am, I showed up for an Echo cardiogram (read ultrasound) of my heart. I have had Echos before and always passed with flying colors. I saw this as a precaution and was looking forward to receiving my miracle drug on Wednesday after passing this silly test. I drove myself to the appointment. I don't even think I told Big Man or mom about the appointment because I simply assumed it was a precaution. Boy, was I wrong.

Two hours later, I was in an ambulance being rushed to Brigham and Women's Hospital for emergency heart surgery.

The Echo technician told me I had fluid around my heart, also called a pericardial effusion. The fluid was pressing on my heart, making it difficult for my heart to beat, which explained my breathlessness and general fatigue. I was in a daze, more concerned about what was going to happen to my car that had been left at the Echo location than what was going on in my chest. I was strapped onto a guerney, and reluctantly asked the EMT to pass me my cell phone. I said to the EMT, "I suppose I should call my husband and my mom, huh? This pericardial whatever is going to take probably a few hours to handle, right?"

He looked at me like I had three heads and responded, "Yeah it's going to take at least all day today, ma'am."

"Really, all day? Are you sure? Because I really don't want to have to call in sick to work? I had a really full day."

The EMT looked around the back of the ambulance in the hopes of finding some help dealing with the insane cardiac patient. "Ma'am, you are being rushed to the hospital for emergency heart surgery. I think you need to take a day off work. You should probably call....everyone."

Emergency heart surgery? What in the world? I'm 29! I feel fine, I swear!

It wasn't until I started making phone calls that reality set in. As I spoke to Big Man and said, "You need to come to the Brigham. I have fluid around my heart." That was the moment when my voice cracked and I broke down. The EMT looked relieved.

Big Man fled from work, his boss agreed to dog sit (we love you, Bee!), my mom was booked on the next flight from Baltimore to Boston.

Just when we thought progress was being made in my fight against cancer, it turns out this sneaky beast had gotten right to the heart of the matter. My cancer has metastasized to my heart. Even though the drug cocktail was working on my liver so beautifully, it is possible for a drug to work on one organ and not on another. Doctors called this a "mixed response."I had been afraid of cancer for years, but never before had the fear struck so deeply, and felt so serious. I had cancer in my heart? I didn't even know that was possible!? My heart, the very thing that makes me this small, passionate, headstrong young lady. My heart, that beats so strongly when I get hugs from my husband. My heart that feels like its going to burst when I watch my niece Annabelle waking up from a nap. My heart....the door to my soul, my very essence, that thing that we just assume will always keep beating. My heart has cancer. Wow.

The doctors put a drain into my pericardium - the thin lining around my heart. They drained out 600 millileters of fluid. The young residents were in awe of me, "how were you doing yardwork and taking the dog for a walk with 600 mL around your heart? I'm surprised your still standing! Man, 600mL." The cardiac surgeons were more professional, "You had a 'rather large' pericardial effusion."

To make matters worse, during my heart surgery and the battery of tests before and after surgery, they saw a build up of fluid in the sac around my lungs - that would also need to be drained.

I had two surgeries and spent more than a week inpatient in the hospital. The whole week was a complete blur. I went into the hospital a "relatively" healthy 29 year old who had just spent Labor Day weekend sitting poolside in a bikini. I left the hospital with a clear plastic tube hanging from the right side of my abdomen. A permanent drain that was inserted into the lining of my lungs. It will clear out any more fluid from my heart and lungs that the cancer deposits there. I suppose I should load up on one-piece suits and finally part with those midriff baring cut-off t-shirts I have held onto since college!

I also left the hospital with a new appreciation for how I do NOT want to spend my last few months of life. I want to fight this cancer with all that I have. I want to exhaust every possible clinical trial and FDA approved drug. As long as I can stay in fighting form, I will fight with all the might my impaired little heart can muster, but I do not want to end up saying goodbye to my family from a hospital room, in a strange itchy bed with lots of beeping machines, fluorescent lighting, and no view from the window to speak of, where the only company is coming from Dr. Phil on the small tv screen in the corner. No, I want to say goodbye in the comfort of my own home, the home that I have fought so long and so hard to establish with my Big Man. My home that is full of my smells and my love and my sweat and tears. There is really no place like home.

I am home now and am so happy and content. You all aren't going to be getting rid of me just yet. I am getting comfortable with this Pleurx drain. I can empty it myself now and it doesn't hurt as much as when they first inserted it. More importantly, now that I am actively draining this fluid, I no longer get breathless or cough uncontrollably. I am starting to cook and clean and play with the dog as before. Also, oddly enough, even though my heart and lungs almost gave out on me  last week, my liver is functioning beautifully! I have been accepted into a clinical trial! We just started this week and I'm feeling really optimistic about the sounds of these drugs. More to come on that front as we learn more in the coming weeks, but just know that I am still fighting.

Next weekend is the 2012 Susan G. Komen Washington DC 3-Day. With the support of an incredible organization called Check Your Boobies, a non-profit organization I started working with last year that educates women about breast health in a frank, fun, and fear-free manner, I have reached my $2,300 fundraising goal! My mom, my younger brother, my uncle and cousins, my dear friends from Concord, MA, from Baltimore, MD, and from Florida, we are all walking together on team Million Dollar Babies, and come hell, high water, or even heart surgery, I will be walking with them! I leave this Wednesday evening for the DC walk. I get tired really easily as I am still recovering from the surgery, so I'll probably only walk a little bit each day, but I plan on crossing the starting line Friday and crossing the finish line every single afternoon, hand in hand with my family and friends. I'm still here, still fighting, still loving, laughing, and, above all, I am still living... fully.... with cancer.

As October begins, a new chapter in my cancer journey has also begun. Yet again I am humbled by this disease. Yet again, my journey has gotten even harder, and yet I've come through it and found myself back at home surrounded by love and comfort and I'm feeling good when I wake up in the morning. I don't know how or when this story will end, for a minute there in September I thought my story was over, but because of Pleaurx catheters and good doctors and clinical trials that all of you have made possible, I'm still hopeful. I still have a little more time. I'm not giving up.

I hope none of you give up either. If I can continue to cook dinner, work full time, and strive for a personal best on the Susan G. Komen 3-Day, surely each of you can do something with your day or with this month, or with the rest of this year that will positively impact the fight against cancer.

I can't wait to update you at the end of this month with good clinical trial news, because I know my heart is strong enough to fight the cancer that has taken up residence there. 

Tuesday, August 28, 2012

Moving Forward Past Heartbreak

This summer has officially been the hardest season of my cancer journey. After seven years battling, I thought I had seen it all. I thought I could handle anything thrown at me in that doctor's office with grace and power. I thought I had already dealt with and learned how to overcome disappointment and setbacks. I was wrong.

Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.

My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.

On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!

The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before.  It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.

A month went by and no new trial opened up. That was heartbreak number 1.

Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.

Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!

Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.

Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.

I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.

She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.

After all this waiting, all this hoping, all this sitting by the phone.

I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.

I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.

I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.

I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier.  I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger.  I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.

But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.

I am starting to call friends. I am keeping engagements. I am trying.

Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%.  It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.

I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.

But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.

I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.

So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!

I am going to start living life again.

Thanks for being patient with me as I struggle with this. I care about all of you very much.