Wednesday, April 1, 2015

                                                                                                                      April, 2015

To the Readers of My Big Girl Pants,

                     Again this year, we are writing a blog post to commemorate the anniversary of our sweet Bridget's death on April 4th. It is hard to believe she has been gone for two years. We miss her terribly, each and every day, and we know that you, her good friends and blog readers understand that pain and miss her as well. We will gather as a family this weekend and raise a toast to Bridget and comfort one another by remembering.

                      It helps us a great deal to know that Bridget is not forgotten. A tangible proof of that is to witness all the good that is ongoing in her name. The Bridget Spence Fund, launched by the Pink Angels continues to grow and to directly support the research of Dr. Ann Partridge. In October, the first annual Bridget Mooney Spence Award was presented at the "Celebrating Young and Strong" Gala, held at the Boston Harbor Hotel, to benefit Dr. Partridge's Young Women with Breast Cancer Program. Bridget's family and many of her friends attended, and we felt her presence strongly, knowing she would have danced into the wee hours! Nothing would have made Bridget happier than knowing she was, in a way, giving back to Dr. Partridge for all of her love and care during Bridget's cancer journey.

                        And so, we come again to ask you to remember Bridget, with even a small donation, by clicking on the Pink Angels' website below and following it to the Bridget Spence Fund. It is not hard to imagine Bridget, flashing her gorgeous smile, and being grateful for all of you.

                        Many thanks......................

                                                             www.thepinkangels.org


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.