Some days, you just have a “day.” I got chemo on Monday. Had to wear home the wonder woman fanny pack, got through Tuesday and Wednesday. Got unhooked on Wednesday. Went to work on Thursday. Friday, I had some appointments and some conference calls. I was doing ok, but took a downturn. Nauseous, wobbly, shaky. I hate when my hands don’t work right.
When I was growing up, my parents had this huge group of friends. We would all go to the beach together. The children would play in the ocean and the adults would do adult things that involved drinking beer, dancing and a theme that included costumes and songs and choreographed routines. It was a lot of fun, and I miss those days. One of the wonderful people who was a part of my life back then is Mary. Through the glories of social media, we’ve reconnected, and I was dismayed to hear about her battle with cancer. Until I, myself, was diagnosed at 35. While I was still troubled by her illness, I found an encourager, a friend and fellow warrior in Mary.
I am profiling people in my life who have been diagnosed with cancer in an effort to remind all of my friends and family and anyone else reading this that cancer can hit anyone at anytime. You don’t have to be afraid of that – because so many cancers are so treatable if you would just check out anything unusual and advocate for yourself so these cases can be caught early.
Here, Mary, who discovered her cancer through PAYING ATTENTION TO HER BODY and CHECKING IT shares her story in her own words:
My cancer was found by accident. In August of 2011, I went to MedExpress for some discomfort in my upper rib cage that I assumed was my gallbladder. I was 48 at the time and I just assumed body parts would start to give me trouble. They sent me for some blood work and a scan of my gallbladder, liver and pancreas. That, my friends, is how it began. My liver enzymes were high and the scan of my liver showed something very bad. After seeing a liver specialist, a battery of tests ensued in the next few weeks including a liver biopsy where it was determined I had breast cancer that spread to my liver. Now to find it in my breast, I kept feeling for lumps, pressing, pushing, nothing. I went for yearly mammograms and was about 3 months late in getting my annual exam. How could this be? Soon thereafter, I met with my Oncologist, Dr. Lembersky at UPMC. he wasn’t convinced it was breast cancer since we couldn’t feel the lump so he sent me for a mammogram. Upon having my mammogram, they scanned and saw nothing, I showed the technician what I thought may be something – it was a thickening on my breast, sort of like having a hive. It wasn’t very hard, it wasn’t a lump, but a thickening. Sure enough, a biopsy determined that was it. He confirmed that I had Stage IV metastatic breast cancer that spread to my liver. I was Her2 positive which is an aggressive type of breast cancer that tends to grow faster and is more likely to spread and come back. It’s also fueled by hormones so they threw me into Menopause to shut it down. Dr. Lembersky was stern, said there’d be no surgery, just chemo and that they’d hit me hard. I said “listen, I have a 16 year old who needs me and a 401K that I want to spend. You do whatever you need to to make sure I stay here.” He said he’d do his best, but I could tell, he was very concerned as we were too.
So the chemo began every 3 weeks for 6 months. My body was in shock, I never get sick, not a cold, the flu anything and my body was feeling the ill effects of chemo pretty quickly. After my 2nd treatment, I ended up in Shadyside Hospital as my white blood cells were dangerously low. I became Neutropenic and they thought I had an infection. No infection, but the chemo was wracking my body. They brought me back after 3 days in the hospital. Along the way, I lost my hair, and had terrible side effects from the chemo that got worse with each treatment. By the time I was done, I was cooked and I’m not sure I could have gone on any longer. But with the presence of family and friends, I was able to push through.
Luckily for me, the chemo worked beautifully. It was squashing the cancer and my Oncologist was thrilled. I continue my cancer fight with an IV infused drug of Herceptin every 3 weeks and a pill called Tamoxifin daily. This will continue for the rest of my life or until we need to do something differently. I began post-chemo scans every 3 months and now I’m out to every 6 months. It’s been 4 years since my diagnosis, I’m in remission and to this day, Dr. Lembersky calls me his “miracle patient.” I don’t consider myself a miracle, just lucky this time around.
In the beginning, I felt that cancer was controlling my life and would do so forever. And in a sense it is a bit controlling, which I absolutely hate. As I continue treatments, there’s a constant reminder when I visit the Hillman Cancer Center and see so many people young and old suffering at different stages of this awful disease. There’s times I “room” with another patient and try to be their cheerleader, giving them my bleak story and telling them there’s a chance, to fight hard, to stay strong and that makes me happy. Then there’s times that I break down because it’s so scary that I’m not in control and I hate to see people suffering. I’m truly traumatized by the whole event and when I talk about my chemo days, often times I break down because it brings back so many memories of pain and suffering. But the one thing I can say is a cancer diagnosis to me meant that I needed to make some lifestyle changes. This was where I was going to be a little more in control. After reading some books and educating myself on the disease, I truly believe cancer can be fueled by what we eat. I am trying to do everything I can so that my cancer does not return. I work with a nutritionist, try to eat clean, have an Integrative Medicine doctor that I see for the lasting side affects of chemo and continue follow-ups with my Oncologist. I had genetic testing done for my family (yes, even though I have a son, it matters) and I don’t carry the gene, nor can they find a genetic reason for the history of cancer in my family. My mom has ovarian cancer for the 2nd time (does not carry the gene) and her sister passed from the same disease. There’s something there, they just haven’t discovered it yet.
I do look at life differently since my diagnosis in both good ways and bad. Unfortunately, I don’t have much sympathy when someone is sick with a cold or something minor and whines about it – now that’s bad. But then there’s the good – this has opened my eyes to how strong I actually am, to all the blessings in my life – my husband and son, my family and friends and the simple things in life. I pay it forward however and whenever I can. I don’t sweat the small stuff and try to put things into perspective. I think Jim Valvano captured it when he said “”Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.” I think that sums it up.
Mary’s story has encouraged me greatly. She fought hard and continues to fight to keep that pesky cancer at bay. And she’s making it. She looks great, travels for fun, and recently married her sweetheart, Harry. Mary has been an example to me of a fighter and a person who has figured out how to enjoy life even when it’s really hard.
In addition to encouraging me, she introduced me to Chef Colombe. Chef is part nutritionist, part life coach. She had cancer, herself, 20 years ago, and though she went through treatment, she also believes in our ability to help heal ourselves through healthy foods, clean eating and other lifestyle changes. Mary has been working with her for a while, and I started as well. Though I have studied and researched a lot that is out there, regarding different opinions on what foods contribute to cancer and what foods fight cancer, Chef Colombe has significantly deeper knowledge. And my favorite part of her approach is that she knows there are no one-size-fits-all answers. Every body is different. Every cancer is different. Every chemo protocol hits each person differently. She asks a lot of very good questions and takes your entire health situation into consideration. She works with people facing all kinds of issues from cancer to celiac’s disease to general low energy. She can be found at www.lifemadeedible.com
friends who are either currently fighting cancer, in remission or have passed
away from cancer. She looked at me,
shocked. She wanted to know how many
people we were talking about. 2? 4? I
thought about it and realized that I have way more than that. She acted as though this was quite surprising. I don’t think it is anymore. Young women get cancer.
been. My presenting symptom (TMI ahead!)
was blood in my stool. But I had seen three
doctors about it over ten years (TEN YEARS!!) and until I was diagnosed, was
basically told to eat more fiber. I knew
something was wronger than that, and I honestly put off pushing for diagnosis out
of fear and embarassment. (You haven’t
lived until a doctor is closely inspecting that area of your anatomy – bucket list
alert!) I don’t live in the space of
blame, but I deeply regret not advocating more for myself, and wish I hadn’t
been so embarrassed to discuss a little blood in my poop.
I believe, is part of the significance of my adventure with cancer. Those feelings are difficult to live with,
but I feel propelled by them in a positive way. I think I can make a difference
by broadening the scope of topics that are ok to discuss. Think of it this way. 20 years ago the term “breast cancer” was
whispered shamefully. We didn’t talk
about diseases that kill us and we didn’t talk about our boobs! Now, you have NFL players sporting pink shoes
and there is a line of products with the phrase FEEL YOUR BOOBIES splashed
across them. It’s ok to talk about
breast cancer. Say what you want about
Susan G. Komen (many survivors do not love this organization) but they nailed
it in terms of social marketing. They changed
symptoms? What are they? Where are they? How long do they last? I want to end this mentality of “If I ignore
it, it will go away.” That’s how people
die. Early detection is KEY. Cancer treatment is changing. Sooner is better. Waiting gets you a big fat NOTHING. So…CHECK IT.
news” is a DIAGNOSIS. A diagnosis is
GOOD. Does anyone want to hear they have
cancer? Nope! But right now, if I could go backwards in
time to 2005 and get a Stage 1 cancer diagnosis instead of what has become a
Stage 4 diagnosis, I would be thrilled to be told I have early stage
cancer. Overjoyed. You can’t fight what you don’t know. So…CHECK IT.
my guy. Dr. Martin Seltman at Metro
Family Health Center in Edgewood/Regeant Sq.
He treats me with respect and dignity and as a partner in my care. If it wasn’t for him, my PCP, I would never
have gotten to a specialist who diagnosed me.
He’s my hero because he was a safe enough person during routine sinus
infection visits for me to finally whisper my terrible secret. I recently wrote him a note because I thought
I should tell him how much his kindness and professionalism have impacted my
life. So…get a good doc NOW and CHECK IT.
Check your boobs. Check your butt. That weird bump? Check it. Checkity check check check.
fellow cancer fighters. Warriors. Bad Asses. Diligent checkers. First up is Katy Ursta.
mom of two, wife of a great guy (who I happened to babysit many moons ago!) and
a top notch Beach Body coach. She has
created a business that allows her to share her passion for fitness, transformation
and helping others, and allows her to work from home. Katy was in great shape, active, happy and
enjoying a busy, productive life when she noticed a couple of odd
symptoms. Her lymph nodes were enlarged
and her legs were dry and itchy. She was also weaning her son and had some issues that presented as mastitis in her breast. Smart
lady that she is, she went to her doctor and it was quickly discovered that she
had Stage 4 Hodgkin’s Lymphoma, a blood cancer that causes tumors throughout
working out daily, dedicating her workouts to fellow fighters. Example:
“Today, we’re sweating for Jessi.”
What an inspiration! I know that
while we were in the chemo trenches together, she would spur me on to get
active even when I felt my worst. Katy
has used her unique position and experience to develop a platform for speaking
and helping others get in shape. She is
partnering with me in raising awareness among young people to not ignore those
symptoms, not fear diagnosis and get to the doctor. Katy is a beautiful spirit who I am proud to
know. She is generous, fun, friendly and
full of energy. If she doesn’t inspire
you, no one will. I encourage you to
check out her blog. If you are looking
for a compassionate, supportive person to guide you in an effort toward better
health, she’s your girl. Check it: www.onefitfighter.com
Let’s talk about chemo.
I get a lot of questions about how my chemo works, and since I just completed my 3rd cycle, and tomorrow begin my 4th, I thought I would explain how my customized protocol happens. I say this out loud as an answer to a question about 5 times a day. So, if you ask me, I’ll know you don’t read my blog, or that you stink at reading comprehension. Just kidding. I know, I can barely keep track of it all myself and I’m the one doing it, so if you forget, it’s ok. I don’t mind.
The cycle starts on Monday. Kevin and I go to the UPMC Cancer Center in Monroeville. We meet with my oncologist, Dr. Mehta. He is on the young side, and the right mix of serious, funny and hopeful. I trust him and look forward to seeing him. He asks how I’m doing, we go over any new side effects. This time, at tomorrow’s visit we will be having a major discussion about my nausea from last time. I have a folder’s worth of research in my head and my expectation is that he will be very responsive and helpful. We need to get this nausea under control.
After we meet with him, they draw blood to make sure my levels are high enough to withstand chemo. This is my 12th round of chemo in my life (8 last time plus the three I’ve had) and I have always been ok. However, I closely review my own blood work and I notice a few levels that are concerningly low. We have discussed this and Dr. Mehta has a close eye on them. After they take my blood, I go back to the room and pick a chair. The room is open, with waist high walls and partitions. I try to get a chair in a sectioned off area – depending on who my companion is, we can be a bit rowdy, and many chemo patients nod off to sleep during treatment. Kevin stays with me until I get hooked up to my pre-meds and then he goes off to work. Usually my mom comes, but if she is otherwise engaged, like watching Cass if she has the day off school, different friends fill in as chemo companion and chauffeur.
The pre meds are dispensed via IV. They include fluids for hydration, (basically everyone in chemo is dehydrated. Want to be a pal? Offer me hydrating beverages whenever you see me) steroids, (they help your body deal with the side effects) and anti-nausea medication. This takes about an hour.
Then, they change the bags and bring out the chemo drugs. Oxaliplatin is the main drug for my type of cancer. It’s side effects are primarily nausea, fatigue, hair loss and cold sensitivity and neuropathy. This means that for a few days I can’t touch or drink cold things – it causes a seriously unpleasant sensation. To the point that even when that effect has worn off, I get anxious, worrying that touching or drinking something cool/cold will hurt me. I seem to be experiencing some hair loss this time. I am losing quite a bit in the shower when I wash my hair. I am thankful that I have a lot of hair, because it will hopefully be a while before it’s showing and I feel like I have to do something about it. (Head shaving party?!) It’s possible it will just thin some, so I’m not jumping the gun on this one. But I’m watching vigilantly, lest I be that in denial cancer patient, walking around with patchy mange. Also? Why my head hair?? I notice my leg hair hasn’t exactly taken a vacation. Whatever, body.
Vectibix is another chemo drug administered via IV. This drug causes a terrible rash. I seem to be getting it mildly on my face and chest, but it’s primarily on my scalp. It itches and is a bit painful. So far, not anything I can’t ignore, but I wonder how much worse it will get. It will be really awesome when I have to shave my head and we can then see it’s covered in a horrible rash. Someone, please start scoping out wigs. Something with bangs, perhaps?
Finally, we have good old 5-FU. I hate this drug. FU indeed. They give me a bolus which is a syringe of it, so it comes on hard and fast, and then they hook me up to the Wonder Woman fanny pack. I cart this large and in charge pack around everywhere I go for 46 hours following hook-up. It’s cumbersome and makes a clicking noise about every 30 seconds. It is always a welcome relief to get it disconnected. But on Wednesday, when I’m disconnected, that is when the side effects really start getting bad. Nausea, fatigue, digestive issues, heartburn. It’s not usually all of those, but those are the ones that have given me the most trouble. They last well into the weekend. Sunday is usually the day that things start looking up.
This past time was pretty rough. The nausea really gave me a hard time. I have a game plan for dealing with it this time, so hopefully we can get in front of it and head it off for at least a while. If I could get one or two more days of feeling ok before the really difficult days set in, I would be very grateful.
Generally, with chemo, the drugs have a compound effect, meaning the side effects they cause get worse each time. But sometimes, certain effects, your body has a way of adjusting to them and they get better. I’m hoping and praying that we don’t have all of these side effects in increasing levels each time. But I also know that whatever comes, I am capable of dealing with it. Prayer, thankfulness, attentive medical staff, and unflagging support, assistance and encouragement from #teamjessi is all critical and effective. These are the tools by which cancer and chemo are overcome.
My attitude is currently ok. I’m having a little anxiety and discouragement facing tomorrow. I have some prayer and some other attitude adjustment activities on the schedule for today. Each time, so far, I have been able to rally, able to see the hope, see the need to hold my head up high, and face it square on, get down to business and get it done. Sometimes, it takes more effort. Or more God.
Knowing how much people care has this magical effect on me, too. When it is clear that someone has thought about my current situation and reaches out and does something in an effort to help, it’s truly incredible and I have moments where I think that maybe one of the reasons I am going through this really difficult time is that I never would have understood the depths of care some of the people in my life have for me. My mom, cooking up a storm two weeks ago so that I would have organic, healthy, but comforting meals all ready to go when I didn’t feel like cooking. A friend continually asking me what I need and figuring out that a massage gift card was the sweetest gift I could have received. Another friend who fights hellish traffic every Tuesday to bring my family a gourmet meal from another friend who has agreed to provide it each week as long as we need it. A friend so kind, she supplied me with many needed facial products to combat the acne/rash. A group of friends, most of whom I have never met in real life, chose Pittsburgh for their annual gathering – I assume partly because they are dying to see America’s Most Livable City! But also partly because I’m here. I can’t wait to see these ladies! Friends checking in, praying daily, offering help with Cass – heartwarming, life giving.