Amber Marchese Blogs About the Moment When Cancer Made Her Feel 'Totally Alone'
Despite how the disease can test her faith, RHONJ star writes she knows more than ever that "life, death and everything in between is a glorious gift"
Amber Marchese, star of The Real Housewives of New Jersey , is blogging about her second battle with cancer for PEOPLE. After surviving breast cancer in 2009, she discovered a lump, which turned out to be cancerous, in her right breast in April. Marchese will share updates on her treatment and how she is coping with this second round of the deadly disease with prayer, a positive outlook and the help of her family.
If you read my blog last week, you know I left off at a point where the doctors had to determine the Stage to which my disease progressed. As I said last week, the first step before determining your treatment is Staging your disease. My amazing oncologist, Dr. Michael Nissenblatt, began ordering a gamut of tests to see if and or how far the cancer spread. My first scan was a full body PET scan (positron emission tomography (PET) scan. The PET scan uses a radioactive substance to identify cells rapidly metabolizing sugar. Why do we care about sugar? That was my question.
Simply put, cancer cells grow at an accelerated rate and require a food source, so cells that are rapidly metabolizing sugar are growing (more on nutrition and cancer in a later blog). The PET scan identifies spots of increased activity. The cells that burn sugar are called “hot spots” because they literally glow on the scan, with a tumor glowing as it grows much faster than normal cells. Before you look at your PET scan and freak out, half your organs should glow! Remember many of your organs (like your heart) better have activity, or you are literally dead.
So my husband Jim and I drove to the radiology center. It was clear day, and the sky was blue, but I only know this because my husband told me – I was lost in thought.
About an hour prior to the scan, the technician put an IV and injected radioactive dye, or tracer, into my body. With Jim by my side, I was instructed that I could not talk or move a muscle in my body. Any movement could potentially cause unwanted activity in the spot that I moved. Movement could cause a false positive and that would mean more tests, so I remained silent and still. It felt warm going in, and I had a metal taste in mouth, but other than that it was not eventful.
The IV was probably the worst part of it, but I am a pro with IV’s now – something that I never thought I’d say six years ago. After about 30 minutes, I was brought into the scanning room. It was a large, dome-like machine that was open enough that it didn’t fortunately cause claustrophobia at all. The entire test took about 30 minutes and was relatively easy. The tech kept in constant communication with me, which was so comforting because I really felt totally alone in there. I wanted to be home with my children so badly, but there I was again, doing the same exact scan I did six years ago. It was an awful, scary feeling that I would not wish on anyone.
My next scan was a brain MRI (magnetic resonance imaging) with contrast, then an MRI of the abdominal/chest area with contrast and finally a MUGA scan of my heart. The two MRIs and the MUGA scan were all performed on the same day a few weeks after my PET scan. Again, I had to get an IV for contrast that is used to get clearer image of my internal parts in my body.
Breast cancer typically spreads to the bones, liver, lungs and brain. The PET scan is a very powerful and sensitive test that can pick up even a small amount of cancer; however, any scan can give false negative and positives, so that is why various tests are administered to back up each scan and provide a baseline. A baseline is required so the physician can determine if any significant changes have occurred. The contrast they used is named gadolinium, which has absolutely no negative side effects except that it feels a little cold at the site of injection.
Sadly for me, right after I received the IV I had to say goodbye to Jim. He had to stay in the waiting room for all scanning. I felt so lonely and scared. I hated being there. After the contrast was injected into the IV, the technician led me into a room with a machine that was almost identical to the PET scan, only it was a far smaller space that I was in during the imaging. Sheer panic almost started to set in, my heart started to race. I really had to get in control or I was not doing this test. I have to admit, taking my chances seemed like a really good idea at the time.
I was instructed to lie down and remain completely still on a table. A devise called a coil was placed over my head. I was told that I was going to be alone. They provided headphones so I could hear the technicians and listen to music. The idea is to try to relax during the test. The tech assured me that he would have a complete visual of me throughout the test and that it would about 40 minutes. As he left he handed me a device with a button. It was like the ones in the hospital that you press when you need a nurse. He also assured me that they would be able to hear me if I needed assistance – now famous last words.
When the test began, I was in complete control. I was good, totally dialed in. It started off easy: I heard tapping noises that wasn’t too terrible at all. I was softly praying “Our Father” and “Hail Mary,” and I was chugging along. I do not know why, but things took a turn for the worse – and I mean fast!
I heard what sounded like an emergency broadcast signal on your TV. It was so loud that it vibrated in my brain. I started to panic. I just wanted to rip everything off me and get the Hell out of there, but I knew I couldn’t – I needed this test.
I tried to calm myself. I began praying louder and louder, keeping my thoughts and emotions on prayers and my breathing. I would get control for a few minutes and then go back into panic mode.
It felt like the scan went on for hours. I finally heard the technician tell me I was about halfway through and thought to myself, Are you kidding me? Halfway through?! I should be almost done!!! I kept saying to myself, “Oh my Lord, help me.” I continued on, though, because this was not going to rattle me. Then, God as my witness, I began to feel pressure on the sides of my head by my temples. It felt like my brain was being scrambled up into little pieces! It was awful. I thought, “This feeling cannnot be right!”
I could not take it any longer. I yelled for the technicians, but there was nothing, no response! I lay for a little longer and then began yelling again, but again nothing! Now I was completely panicking. I started pressing the button once, then twice and then repeatedly pressed the button until my thumb was raw. I did not stop. I started screaming and yelling for them to get me the Hell out of there!
Finally, they heard me and came rushing in! I was cursing up a storm and then apologizing because I was cursing. I was so terrified! They felt awful that that it happened to me. The nurse literally just kept on hugging me and apologizing. Sure enough, the intercom and the button were not working. Wow, just my luck! They told me that it rarely happens only happens 2 percent of the time. It’s like winning big in Vegas, but the casino goes bankrupt before you get payout.
Anyway, after I calmed down from that “wonderful and peaceful” experience of the brain MRI, I was on to the chest/abdomen MRI! The second MRI was a walk in the park compared to that other joyride. It was an open MRI so there were no issues of claustrophobia. They injected more contrast, which, again, had no real side effects except the incredible feeling that I had to urinate.
Once again, I was able to get the IV and see Jim. I could not get to him fast enough. He kissed me and smiled he had a funny story to tell me. He told me how he (any everyone in the waiting room) could hear someone praying. He said he could hear it all the way down the hallway. I said, “That was me!” I wondered if everyone heard me cursing, he assured me that no one heard that eloquent part of it. Apparently, he could hear the prayers but not my cursing, thanks be to God. Go figure, I would have bet my cursing was much louder than my prayer.
So, with a big smile on face, we kissed and I said, “Next up”! The final test of the day was my MUGA scan (multigated acquisition). This scan is designed to measure if my heart is pumping blood properly and if there are any abnormalities. This scan is necessary because certain chemotherapies and/or biotherapies, such as Herceptin and Perjeta, may cause heart damage. I am happy to report this one was easy, breezy just long and tedious. It felt even longer because I was on my fifth hour of scans that day. I was spent and ready to go home, but a thought kept crossing my mind.
It can take a couple of days to get the report because the radiologist oncologist reads the scans, writes a report then sends it over to my oncologist. I cannot even stress to you enough that those three days are Hell on Earth. I prayed for hours upon hours, but sometimes it is just too hard to bare it all. It is all I could think about, literally every waking second of the day. Sleep would be my only reprieve, and perhaps the first 30 seconds when I first woke – until I realized once again: “This nightmare is really happening.”
I tried to be mommy without a terrified, fearful look on face. It is more difficult than you would think, as my children are so in tune with my vibes. I just kept smiling, hugging them, kissing them and doing our normal activities.
I have been through this before. I know how fear of the cancer spreading can trick the mind into thinking an actual physical pain is taking place even when it isn’t. But the fear can be overwhelming, and I easily get sucked in a great abyss of despair and anguish. I thought it was in my chest. I could actually feel pain in my bones. I would press on my bones literally hundreds of times until I actually created the pain that I imagined to be there. I would ask my husband countless times, “Do you think it spread to my bones?” and he would patiently reply a hundred times back that he did not think it was cancer. He would always take the time to calmly tell me the reasons it could not possibly be in my bones.
However, the only true solace that ever gave me reprieve, strength and allayed all of my fears was praying. Humbly and fully, dropping down to my knees and acknowledging my higher power, my Creator, every day, sometimes for hours at a time. Giving up total control of my life and handing Him every aspect of it. With that, I have been blessed beyond measure, to know that my life is mapped out according to God and from that I will not fear anything. Life, death and everything in between is a glorious gift, I know that now more than ever.
Advice No. 1:
When you see me or any other cancer survivor, do NOT tilt your head to the side while doing the boo-boo lip. We are not infants or little girls. We are strong women that face this with faith and courage. I much prefer you slapping me on my ass, telling me to get my head in the game and “Go get ’em, tiger!” I am going in for another battle, a hug-it-out session does not exactly get me pumped for glory.
You will have a battery of scans and tests. This does mean you have metastasis or your disease has spread. There are protocols that should be followed. That means every patient with a given diagnosis is going to undergo many of the same scan regardless of Stage or prognosis. Do not think the worst because your physician ordered a number of scans. The scans do not hurt and are important to your diagnosis and treatment.
As I did in my previous blog, I would like to mention some advise that will help not only someone going through a diagnosis, but also, help loved ones around the person. Again, this is not meant to insult anyone as I know everyone has good intentions and concern. These are points that I did not know or understand either, but have now had a crash course to what has made me feel better, feel worse, and/or extremely upset.
I am sending love to you all. I have been meeting some AMAZING people out there that I wish I could have the time to have coffee or a glass of wine with. Thank you from the bottom of my heart for your kindness, support, and prayers. You all give me strength. Please visit me on my social media, i love to hear from all of you. And, if you could be so kind to comment, like, and/or retweet, I would be very grateful. xoxox