It is so important to have a chemo buddy. Especially when chemo is 8-5 Monday-Friday! Here is a video of my little chemo buddy. Find your buddy even if it’s a book. Your day will go by much faster and help take the focus off of what you have running through your veins. Read more
Hi all. Back to my weekly Starbucks routine of writing after a long hiatus while traveling. I suppose my travels are a way of still trying to make up for lost one-on-one mommy-time with my dear Gracie at the beginning of her life. As I start to write I find myself once again with coffee in hand and tears in my eyes. It must be the coffee :). I’m fine when I write anywhere else.
The song playing as I begin to write is “Waiting on the World to Change” by John Mayer. I don’t want to wait on the world to change. I want to change it. There is a whole world of fighters and survivors out there I had NO IDEA about until I got sick. To me it is such a shame that our society doesn’t know how amazing, inspiring, and strong this network of people is. I want to change this.
I often write or talk about the things we are doing for others and the money we are trying to raise. It isn’t for recognition. I could care less if anyone gave an ounce of recognition. Talking about it is an effort to raise awareness, and money for research :), as well as to inspire others to get out and make a difference large or small. We are small, small potatoes in the world of giving back now but we are doing it in a big way. I only hope that someday we become big potatoes giving back in a big way. This world is a learning process. Raising money isn’t easy. Friends will comment and like a post on Facebook in massive quantity regarding a picture of Gracie or our dog Frankie but if I post something about team Joyful Hope there are absolute crickets. We will learn the fundraising process and are very dedicated to doing so. In the meantime we will continue to cook for patients and counsel new moms with cancer or any woman with cancer that just wants to sit and chat over coffee or tea. If you want to chat, check out Coffee and Cancer.
The Corliss family, Ryan, Trish, and Gracie will not sit and wait for the world to change. We are going to do something about it. One day at a time.
Two weeks before the end of my pregnancy I had a funny feeling radiating up my spine. I thought perhaps this is what a contraction feels like. I wasn’t sure. This was my first pregnancy and I hadn’t experienced anything that remotely felt like it could be a contraction up until the moment I had this feeling. Later, during labor I found out what contractions felt like and knew the feeling I had two weeks prior – wasn’t a contraction. Even later than that, three weeks post pregnancy, post-tumor removal surgery – I was in the hospital and experienced this pain again. This time it was even worse. So bad, that I thought I was having a heart attack.
To describe the pain to someone with a science background – it was like what you think an action potential would feel like if you could actually feel an action potential. I know that is a weird way to describe it but every time I recall the feeling, my mind goes back to my neuroscience class in college and the endless hours studying action potentials and looking at leeches and their nervous systems.
To describe the pain to everyone else that isn’t into science – it was like a radiating pain, pulsing and building upon itself – getting stronger and stronger moving up the spine. It was sharp. It took my breath away. Each pulse sent me forward from my chair.
What exactly is a pulmonary embolism (PE)?
A pulmonary embolism is a blockage of the main artery of the lung or one of its branches by a substance that has travelled from elsewhere in the body through the bloodstream (embolism). PE most commonly results from deep vein thrombosis (a blood clot in the deep veins of the legs or pelvis) that breaks off and migrates to the lung, a process termed venous thromboembolism (VTE). This was my case. The obstruction of the blood flow through the lungs and the resultant pressure on the right ventricle of the heart lead to the symptoms and signs of PE. The risk of PE is increased in situations with cancer, like mine. To read more on PE’s see wikipedia.org.
The most important thing with a pulmonary embolism in my opinion is to get IMMEDIATE assistance. We had big issues with this in the hospital. BIG! In a Terms of Endearment type moment my mom was screaming in the hallway to have someone take us seriously and get me help while my husband was also trying to get assistance, just more calmly. This all led to a big family argument and in retrospect the argument was silly. I needed help but we were worried about causing a scene because we didn’t think we would be treated properly if we did. How awful is that? Why do patients have to feel like they are walking on egg shells with some nurses? Why do you feel that if you demand attention you will be neglected? I had a lousy nurse that night. Lousy. What a bad night to have the one lousy nurse we encountered in my 10 days in the hospital.
To see what my issue was that night the doctor ordered a CT scan. My CT scan was a nightmare. First of all I was on a lot of pain meds and felt very disoriented. I was wheeled down to the bottom floor by a nurse and left in a dark room. Yes, dark room for more than a half hour alone with nobody checking in on me. Off in the distance I heard a bunch of nurses laughing about who was getting “booty” from whom. WHAT? I was so scared to be alone and nobody could hear me. I started to cry uncontrollably because I was afraid I was going to have another episode and I would be laying dead and nobody would know. After that day I never again went to another scan without my husband in tow. Finally a nurse walked through and I said, “Can somebody please help me or tell me what is happening and where I am?”. I think I really scared her because she was so shocked that someone just left me like that. Anyway! The CT scan…they put me on the table and hooked me up to the contrast. I instantly started feeling the pain I felt upstairs. I was so scared. They stopped the contrast, let me sit a moment, then continued. The CT scan confirmed that I had a PE and I immediately had to start Lovenox shots – a blood thinner.
The Lovenox shots. Oh the Lovenox shots. If you are skinny these are quite possibly one of the most painful things you will experience with cancer. The first one brought instant tears to my eyes. I was prescribed two shots a day in the hospital for 3 days. Every time the nurse would come in I would start to cry and I am a pretty tough cookie. I would lay awake all night thinking about that darn shot. I was so happy when I was able to go home and start Coumadin, a pill. Later after thinking I was possibly allergic to Coumadin my doctor put me back on Lovenox shots and I learned that when you give them to yourself you can go very slow and it doesn’t hurt nearly as bad. If you are skinny, save yourself some agony and ask your nurse to administer the shot slowly.
What is one of the main things that has gotten me through all of this?
Laughter, joy, and silliness all wrapped into one. I embrace every moment I can with Gracie and Ryan. They are such a joy. Taking the time to be silly with them, whenever the moment strikes, has made us a happy, happy family and contributed greatly to my healing.
The biggest thing cancer has taught me is to slow down and absorb life. I was always going a million miles per hour, living life to the fullest, but never truly absorbing it because I either spread myself too thin, or I just didn’t take the time to think about all of the awesomeness I was surrounded by.
Here is one of my favorite moments laughing and being silly with Gracie: