Monday, February 29, 2016
Today marks a week since my doctor called to say that more cancer was found from my lumpectomy. In my appointment last Thursday, his recommendation was to have at least one mastectomy because sitting still will be impossible for radiation. It really stinks that if it weren't for cerebral palsy I could just have radiation and pretty much be done with it. However, having cerebral palsy seems to be pushing for a mastectomy. We need better technology.
Since my cancer is still low grade, I still have time to make some important decisions. This Wednesday, I go to a genetic counselor to have a swab sample from me. Then in about ten days or less, I'll know if I carry a specific gene which means I'll most likely have breast cancer in the next five years. If I do, it makes my decision quite clear about a double mastectomy.
Next week, I'm going to Fox Chase Cancer Center for a second opinion. I do trust my doctor but you never know what someone else might see or know. I made the appointment myself and felt proud of myself. Talking on the telephone to people who don't know me is challenging due to my speech. I had to talk a lot about what was going on and it went pretty well.
Many people ask me how am I doing? It's a complex question. When I'm doing my normal life tasks as in playing with kids, potty training Jason, shopping, paying bills etc, I feel perfectly fine. I think I even forget that I have cancer. But then, it'll hit me like when I'm thinking about summer clothes or anything to do with summer. What will I wear? How will I feel? Taking a shower is hard when you look down and wonder how you will deal with an empty space. At night, I read everything I can find to prepare me and also scare me. I'm processing and trying to be positive. I'm still here and should be here for a long time afterwards. A little (or a lot) of pain and a check in with my appearance are worth it.
At Mass yesterday, my mind drifted to my own funeral. To picture my children, family and friends being sad over me felt unbearable. I decided in that moment whatever it takes to keep me here, I have to do. Too many need me but most importantly, my daughter and son.
So, I'm doing fine, but have my moments of fear, sadness and anger. All are normal as long as they pass and you remember the fight to live isn't just because you want to, it's because others need you! Stay strong!
Wednesday, February 24, 2016
I'm very happy that my doctor didn't call about the new found cancer on Friday. It didn't over power Jason's birthday or party. Jeff had to work a few hours in the morning. When the kids woke up, Laura gave Jason his present. She picked up a monster truck fire truck at a store we went to after karate and dinner. Isn't it weird that a store would close at 7pm on a Friday? We made it in time and Laura found the perfect gift.
Jason loved it. Whenever you said Happy Birthday to him, he'd say it back to you. We worked on him saying he was three. Jeff took him to Laura's spelling bee. He did pretty good except after awhile he tried to run on stage. He also needed a pull-up change so they left. After Laura went out, Jeff and Jason picked us up. My parents and all of us went to a local restaurant that we frequently go to for lunch.
We are friends with the manager and they knew it was Jason's birthday. At the end of lunch, they sang to him and served chocolate cake. At first, I thought that he might cry but then he smiled and blew out the candle.
At home, Jeff and I gave him all of our birthday gifts. He had a blast opening each one. Jeff gave him a light saber and a storm trooper jacket. He loved them and looked adorable. He also loved his remote control fire truck. He got many cool gifts.
On Sunday, we had his big family birthday party. My sister bought about 10 helium balloons and I got him a gigantic R2D2 balloon. He was very surprised and still giggles each time he sees it. The party was a success with friends, neighbors and family. All the kids got along. Jason had two birthday cakes - construction site and a race car.
We were all tired and did some cleaning but most was done Monday and Tuesday. Great time! Jason is now heavy in potty training and loving his toys.
Tuesday, February 23, 2016
Yesterday I received some unpleasant and unexpected news. As I was happily working on my personal to do list, my doctor called. The one that performed my lumpectomy. He asked me how I was and I said I felt great. Then he said, "We seem to have a bit of a problem." My heart sank and my stomach knotted.
As it turns out, my easy simple breast cancer has turned into an in your face cancer. Cancer was found throughout the breast basically. And it's from my understanding that he will recommend a mastectomy. Definitely not what I want to hear but it could be worse -- a lot worse.
I called my sister and my mom. I texted friends and other family who I knew were waiting to hear. In the meantime, Jeff came home from school and overheard the conversation. I felt bad that he found out how he did. We were pretty much both in shock and scared but at least it's not the worst.
Laura is so sweet. She cried when I told her. It's not easy at all to tell a nine year old about a mastectomy after I told her I had the easiest kind. She expressed that she never wants me to change and is worried about my pain. She sang to me the song called Fight Song.
Last night, after the kids went to bed, all I wanted to do was cry. And I did. It was like my body went into mourning over the loss of one of the members. I felt anger, loss and fear. Being 40 should be fun. My daughter is 9 and Jason's 3. Jeff's about to graduate and warmer weather is coming back. I was looking forward to working out, returning to less stress, potty training and teaching Jason. I was happy to support Laura in activities and her school. It wasn't supposed to go this way.
A mastectomy is bound to be hard for me. I crawl on the floor to get around at home, I'm lifted up, and I move constantly. How will this work? Plus my self esteem. I grew accustomed to my body and dislike the thought of anything removed. I'm mad about cancer bothering me when I already have a significant disability. I'm scared that I won't live up to my standards in motherhood and being a wife. I feel horrible my daughter is worried. I'm terrified of getting other cancer.
But I do want to live and be around as long as possible so I need to do what I need to. On Thursday, I find out all the details and decisions are to be made and once again I see the operation room for the third time in a month or so. I know I can do this but it's infuriating that so many have to. We are born with our body and our body shouldn't betray us by bad cells!
Writing helps me a lot so you might read the good, bad and ugly. As I'm reading a lot of stories of women in similar circumstances, I hope one day this blog will make someone feel that they aren't alone. You'll cry, you'll be strong when needed, you'll do what you need to do to survive. The big secret is that you aren't fighting cancer because it's an unfair battle. You are simply making constant choices to live and be healthy. You are fighting for your soul not to be a cranky, bitter and sad person. That's the real fight, and we can win if we decide!
Saturday, February 20, 2016
Laura can check off something of her bucket list. She entered and made it to the third round of the Phoenixville area spelling bee. I was surprised that she actually entered. Laura used to be a shy girl and wanted nothing to do with being on a stage. We practiced the list a lot but she wanted to only practice the third grade list. I wanted her to do the fourth grade list as well but she didn't. Little did we know that they combined third and fourth grade. Who knows if it would've helped her get a little further but I bet next year - she will study the whole packet!
Needless to say, I feel very happy for her. She made it past where she thought she would. Laura was always scared that she was stage fright and she concluded that she wasn't. As a parent, I felt every bit nervous as well. My heart beat fast, hands clammy and butterflies. I can now know what my parents felt when I went for Ms. Wheelchair Pennsylvania. I loved hearing her confidence and clarity in her speaking. She seemed like a natural. The best part about it was that it was a positive experience for her and she's likely to try again.
Laura's friend from her English class was also in the spelling bee. Ironically, she went after Laura and went out also after Laura. They both hugged each other afterwards in the hallway. It's always nice to have a friend to support you.
Jason turned three today. The spelling bee was only a five minute walk from our house so Jeff took Jason too. Jason did very well but he tried to run on stage and then he needed to be changed so they left. I could tell by his smile that he felt proud of his sister.
Overall, I'm very proud of Laura and how far she h
Thursday, February 18, 2016
This morning I read an article titled Women with disablities are more likely to die of breast cancer. I read it and everything makes perfect sense. I lived and experienced it first hand and the struggle is real. I'm hoping that my experiences will help educate and inspire more people to get mammograms and Pap smears when they should.
As the article had mentioned that some people with disabilities are under the impression that because they already have a disability what is their chances of having cancer too? I used to think that way in my twenties, but as I got older, I learned cancer doesn't care. Cancer doesn't care if you're a baby, a five year old, a highly school student or just starting out being a mom. If cancer doesn't care about a child, it sure isn't going to care about your disability. You might think you aren't strong enough to handle both a disability and cancer, but you are. You're strong enough to handle anything that comes your direction.
Getting mammograms and Pap smears are the two dreaded things all women hate. But we must do it to live longer. Women with disabilities find it even more of a pain. I have spastic athetoid cerebral palsy so sitting or laying still is impossible. Also, dealing with medical staff is also infuriating. But you know what, if more women with disabilities would go out and get these tests, the more educated medical staff would be. Also, they would be more opt to push for lowered examination tables and accessible mammogram machines.
If a medical facility only sees less than five women with disabilities a year, then they aren't going to learn how to better serve us. We need to be out there educating, advocating and staying healthy. It won't happen over night, but it will happen.
I started getting mammograms at 35. It wasn't easy. My personal care attendant had to hold me and position me in all kinds of weird ways. I could've put it off. However, I have family and friends to live for plus a daughter then. Now I have two children to live for and want to raise. I'd feel really bad and dumb if I died because I didn't take the time and patience to get tested.
In October 2015, I went for my routine mammogram. The dressing area was ridiculously small for myself and my attendant to help me. We laughed and did it. The women who did the mammogram were ok. One was nice and the other just seemed annoyed by it all. In the end, she decided to talk to my attendant instead of me. The mammogram came out incomplete and I needed another one. I went to another facility who was a whole lot nicer.
I went a few days before Thanksgiving. I had a pretty bad cold but it was manageable with cold medication. This facility was so much bigger. The dressing area was bigger and the staff was nice. A few tried to be overly nice but I rather that than rude. We did the best we could again with the mammogram but then they said I needed an ultrasound. I'm very happy my wheelchair can tilt back because I was able to stay in it. The room was hot and all I could think of was an ultrasound for being pregnant is far more fun.
The ultrasound took her time and then called in a doctor. When they call in a doctor, you begin to realize that this could be a bit more serious. The doctor was nice and told me that something wasn't exactly right and I should get a biopsy. Not what I wanted to hear before the holidays. I made the call after the holidays were over. I only told close family members, my best friend and my husband. I didn't want to worry everyone until we knew it was something to worry about.
I ended up going to see Dr. Fox because he could see me faster than anyone else suggested. When I first went, I was freaked out a bit because his office was at a cancer center. It was just a bit of a reality check. The office was dimly lit and full of people. I wondered how many of them had cancer not knowing that shortly I'd be in the club.
The staff was nice and treated me normally. The nurse got a kick out of how well my attendant and I got a long, When I first met Dr. Fox I wasn't so sure how I felt. He started off only talking to my attendant but when she didn't answer, but I did, I think he got the idea that I'm a woman who can talk for herself. He examined me, and looked over my tests. He didn't think I had cancer and instead of putting me through a biopsy, he suggested a more intense mammogram and ultrasound.
After hearing that, I felt relieved. I didn't want another mammogram but it beat surgery. We scheduled it quickly to get it over with. This one was now at the hospital. Again, I tried the best I could to be as still as possible. They took another ultrasound and it was then determined that there was something, although small, to be looked at closer. The doctor on duty recommended a biopsy. My heart sunk after hearing that news.
Then a few days later, Dr. Fox called wanting one more mammogram to make absolute sure! I wanted to scream. He suggested that I take muscle relaxer beforehand. My mom called the doctor as well. My mom is one step from being a nurse practitioner and she used to be a radiation therapist so she knows a lot about this stuff. He explained that he just wants to be very sure that I need a biopsy.
So, I took muscle relaxers that made me very tired but honestly I don't think it made a difference. When my body feels pain, it reacts and I can't help it. So, once again it was determined finally that I needed a biopsy.
Due to red tape, it took a bit to schedule it but finally did, the last Wednesday of January. My mom and husband took me. It was the Wednesday after 30 inches fell but that morning it was raining and warmer. Laura had a two hour delay and she wasn't happy that I wasn't there to see her off to school.
Before the actual surgery, I needed a wire put in place. No one told me that. Also there was a mix up in my blood so they needed to draw it again. That left a nasty bruise afterwards! Getting a wire in didn't hurt but I could feel the wire in there and that wasn't pleasant. The idea is that the surgeon pulls the wire out when they do surgery. It guides them to the mass.
You can read more about myBreast Cancer Diagnosis
Wednesday, February 17, 2016
Today I had my lumpectomy to take out the cancer that invaded my body. Luckily, the surgery wasn't scheduled too early so I could see my daughter off to school. When you have cancer, life doesn't pause. There's still children to raise, a husband to support, a house to care for, pets to tend to and a blog to update. Then in the quiet of the night, the worry and wondering sinks in. However, I tried to focus on the bright side and stay positive.
My mom came to my house early in the morning. She and Jeff went with me to the hospital. We left right after Laura's bus came, and Laura was extremely brave. I could see in her smile that she held in tears. I hugged her tight and kissed her. My mom walked her to her bus stop and they chatted until the bus arrived. Laura definitely enjoyed that and helped diffuse the worry. I hugged and kissed Jason. He stayed with my very good friend. Then we were off!
I wasn't as nervous as I was when I had the biopsy a few weeks ago. I knew what to expect and actually many of the hospital staff remembered me. Everyone was really nice and supportive. Getting my IV took little time which is rare since I move a lot. I also got to have my favorite anesthesia person. My doctor was raring to go to get this cancer out of me and so was I!
I fell asleep rather quickly but woke up when they were finishing up in the operation room. I could hear what they were saying but couldn't really respond. My recovery nurse was really kind and he made me feel comfortable. They gave me a beta blocker so my heart rate didn't skyrocket. For my biopsy, it did skyrocket! This time I felt pretty good.
Before leaving the hospital, I could eat graham crackers and drink apple juice. Before surgery I craved a turkey bacon club sandwich and that's what we got on our way home. I got home around 1pm.
I'll write more tomorrow about after surgery but feeling rather sleepy right now. Thank you for being awesome readers and friends!
Tuesday, February 16, 2016
When I found out that I was the mother of a son, I felt scared. I did a pretty good job raising a daughter, but I didn't know much about raising a little boy. Turns out that it's quite fun and a never ending adventure.
Jason is a smart kid. He can put together things logically faster than me sometimes. Even before he was speaking in complete sentences, you could tell Jason understood exactly what was happening. Now he speaks in sentences. His newest phrase starter is, "I think...." Jason also recently has liked saying that he can't do something even though he can. We are working on that one.
Jason at two hasn't been horrible. He had his moments, but in general, it has been pretty good. One moment was when he used the filled dog bowls as frisbees in the kitchen. There was also the time he took pen to the walls. And most recently, jumped off the end of our couch right into the edge of the table leading to stitches in his bottom lip.
He is a social boy. Whenever we're out, he will smile and say Hi to people. At Christmas time, Jason wished people a Merry Christmas. When we have company, Jason will always ask if they want a drink or food.
Jason takes care of me. Whenever I get up to go down our hall, Jason will run to put the bathroom light on and even lifts the toilet seat in anticipation of me using the bathroom. He will put on my bedroom light and try to get out my pajamas for me at night. He likes to tell my attendant what I need done in the morning. He likes to cover me up, give me drinks and makes sure I have my phone. Jason told Jeff the other day that he has to take care of Mommy.
He knows his alphabet and some understanding on letter sounds. He can count to 12 and puts it out on the clock. Jason knows all his shapes, colors and animals. He can even tell you the names of certain dinosaurs. He knows different trucks and equipment like an excavator. Jason is good at knowing where we're going by the direction we are going in.
Jason is very good at letting the dogs in and out. He can now feed the cats but supervision is best. It's a shame that Lucky is 14 because in her younger days, she would've loved to run and play with Jason. Jason isn't always the kindest to her, unfortunately. This often leads him in time out. He also gets too carried away with the cats also landing him in a time out.
Jason loves his daddy. They both share a love of cars. He often asks for him when Jeff is at school. He also is very close to his sister. They might be six years apart but they can fight and love one another as if they were two years apart. I love when I see them snuggled close on the couch reading or watching a show. I love on Saturday mornings Laura will take care of Jason so I can sleep. She not only plays with him but gives him a whole new outfit and breakfast. She's a great big sister. Jason will comfort Laura when she needs it and looks out for her.
Both of my attendants love Jason and vice versa. I'm very lucky to have great help and people that love my kids like family. Jason's grandparents also adore him.
In a few days, Jason will be three. I'm sad to see two go but three has many more adventures. Mastering the potty is one and he'll be going to preschool in the fall.
Saturday, February 13, 2016
I'm glad that my surgery wasn't immediately after my breast cancer diagnosis. It gave me time to process, think and prepare. I remember a few nights after being diagnosed, Jeff and I laid in bed and I said, "I can't believe that I have cancer!'" He agreed and took my hand.
Last spring, Jeff and I watched a series called Chasing Life about a young woman who has cancer. We've watched movies with people who have cancer and cried when they didn't make it. We've donated money to cancer. But when it hits you, it becomes unreal and almost like you're watching someone else's life. But it's your life.
I have amazing friends and family. I've talked to people more than ever and expressed my love for them and vice versa. Right now, I'm the life version of that song, "Live Like You're Dying." No, I'm not dying of this breast cancer but it reminds you that your ending isn't controlled by you. Bigger and higher forces control your death. No one knows when you're going to die, but it happens. A cancer diagnosis isn't immediately a death sentence but it's a reminder that death does exist even for yourself.
This week is my lumpectomy and then instead of radiation-it looks like I will take a pill for ten years. The doctor feels being still would be too difficult for me. It sounds unbelievable to take a pill for that long but really it's not that bad. If it's destroying something that wants to destroy you, I'd take it for 100 years!
Jeff and Laura are doing well even though I know it's weighing heavily on their mind. Laura breaks down sometimes and I just reassure her what the doctor told me. I feel bad when I know that I'm the cause of someone worrying or concern. I don't like to be a cause for any kind of pain. Jeff is almost at the end of nursing school and I know it's in his head.
As for me, I'm not looking forward to the pain and bruises. I was pretty banged up a few weeks ago and you can still see bruising on my arm. I'm worried about the physical appearance especially with bathing suit season. What can I say? I'm a girly girl and I like turning the head of my husband. But he says I'll look good no matter what.
I see things differently now and try to make each second count. Less television, less technology and more laughing,talking, playing and time. Live like we should live instead of living like time is unlimited. I'm also looking ahead to Jason's third birthday which is a few days after surgery. Plus Laura entered a spelling bee!
Thank you again for your love and support!
Tuesday, February 9, 2016
We all know it happens and it can't be prevented, but isn't it hard when a personal care attendant calls off? It's hard and can confuse your whole day. But what we need to remember is that it'll happen. If the same attendant does it multiple times, then there is a problem but if it's only occasional, it's time to accept it for what it is.
1. Try not to panic - I tend to go in panic mode but that doesn't do much good. So, relax. You'll survive.
2. Call in the back ups - Having a back up plan is needed. You can ask even if they can only work a few hours, it'll be a help.
3. If they give you adequate time, prepare. Think of anything and everything that you would need to help you. Plan it out.
4. Learn - Sometimes when you're on your own, you learn new things that inspire your independence. Be open to new experiences.
5. As long as you can eat, drink, use the bathroom and be warm - you'll be ok. One day will not pull you down.
My daughter loved random days of no attendant. She and I would cuddle in bed while watching television. We'd eat whatever we could manage (usually snacks,) and do lots of creative things to keep occupied. I was extremely lucky that she listened to me and trusted me. It made my life easier. Plus she's very independent.
My son loves pizza so I couldn't pass up a post. Over three billion pizzas are sold in America during one year. One billion pizza frozen pizzas are sold. Pepperoni is the most popular choice. ennaro Lombardi, the first Pizzeria in the United States, opened in 1895 in New York City.
Jason loves pizza but whenever we order, we need to order something else for Laura. She hates pizza. I never met a kid who doesn't like pizza but that's my daughter!
Enjoy your day.
Monday, February 8, 2016
Laura used to be a shy and reserved girl. We always encouraged her to try new things and experiences. Now she is! Laura has joined choir, taking karate twice a week and drawing class. In March, she joined Girls on the Run which also meets twice a week. I'm a little nervous for her that she took on too much but I'm also excited she's expanding her horizons.
Laura's grades are still excellent. Math is a bit lower but it's not due to effort. It's a hard math curriculum this year and I feel they move way too fast. I only feel bad because Laura wants A's in everything and I think this trimester she will have one B in math. I do stress to her that it's more important to know the material than a letter grade. I will accept A's and B's no problem.
She has also entered a spelling B which is on February 20. The same day as Jason's birthday so it'll be quite an interesting day. Laura is a very good speller especially since she reads constantly. I'm just impressed that it was all her idea and she's going through with it.
Last Friday, Laura's school had a special event just for girls. It had to do with girl self esteem, self worth and achieving anything you want in life. I had to write a letter and I think this sums things up pretty well how I feel about Laura.
When I was young, I knew I wanted to have a daughter but I never thought that I'd be blessed enough to have you. You are a remarkable young lady who surprises me daily with your intelligence and drive to do new things. Laura, you are a very strong person who handles life with grace.
I'm extremely proud of you and everything that you create plus think to do. People tell me constantly how much they like you and think you're absolutely amazing. I couldn't agree more. Do not let anyone keep you from your own success or being happy.
Life can be challenging but keep on being you and decide to do your best no matter whatever happens. The world is a much better place with you in it. You are loved, cared about, admired, and respected from more people than you realize. You are compassionate, creative, intelligent, interesting and kind.
I love you very much - infinity and more!
Jessica Grono - educator and speaker
Tuesday, February 2, 2016
I'm just writing a quick update because I had a busy day! My mom took me to my appointment today and now we have a game plan. I have surgery in a few weeks to remove cancer! Then we meet with another doctor to see if I can take radiation or take a pill. They need to see what would be more effective. I might not be able to sit still enough for radiation.
My mom, sister and I went out to lunch. It's been way too long since we did that. Always fun and laughs! I love my family and we support each other through it all. So a big thank you to all of my friends and family.
I'm feeling very optimistic about my cancer. I pray for me and everyone facing this terrible disease that is so controlling. I've been also dealing with a virus that gives you lots of pain in the joints and a rash on your cheek. It's not contagious but has been debilitating to eating, talking and laughing. Pretty much makes you miserable. Last night was rough but seems today has been much better. Usually the pain is worse at night. It's still there but I'm not in agony..
Ok, no more complaining. Kiss and hug the ones you love and keep on with this battle we call life.
Monday, February 1, 2016
Last week I was diagnosed with breast cancer. Believe me, having cerebral palsy made the diagnosis quite a process. Four mammograms, bunch of ultrasounds and finally a surgical biopsy all resulting into a telephone call that no one expects or wants. Not that our life wasn't full enough - cancer wasn't in the plan.
Luckily, as of now, I have a treatable case with a hopeful outcome. Either way, it's still scary and nothing medical for me goes smoothly. So, we are entering unknown territory and experiences. I'm scared, annoyed and frustrated but I'm still a mother, wife, daughter, sister, friend, writer and teacher. An annoying diagnosis doesn't need to overtake my life.
So, February is the month of love -- cancer secondary. Jason turns three in February. He's as incredible as he was when I first met him. Three years of pure joy knowing, loving, teaching and being his mommy. He is playing imagination games, learning constantly and my buddy. He doesn't need to know about cancer. He just needs to know mommy might be tired and sore but always up for cars, books, kitties, blankets and books.
February is about love. Jeff is so close to graduating LPN school. I refuse to let cancer stop that even though I know he's scared for me and has researched it like crazy. He's been very sensitive and supportive as possible. I know it's killing him inside, but we are taking it day by day. Our relationship has an underlying bond of strength that is undeniable. We are a team but know a relationship is work and needs time. We love each other and need each other so this is just another bump in our story.
February is the month of love. Soon after learning the news, tears fell without my permission. They wouldn't stop. Laura. Laura's ultimate fear is losing me. She's had this fear all of her life. So, the thought of having to tell her I have cancer was overwhelming. She knew too much and personally knows people who died from cancer. How do you tell her? I had to be honest but didn't want to be.
Laura listened as I did my absolute best in making it as optimistic as I could. She didn't cry. She asked me questions and we researched together. She said she was scared for me but supports me. I promised her that I'd tell her everything important and she needed to trust me. It was like talking to a friend instead of the terrified heart broken little girl I imagined. That is love.
So, yes, I have cancer and the road is unknown. But I'm still Jessica with many good times, laughs and love to give and receive. Please schedule your mammogram today! I hope you continue to join me as I enter this new world and we come out smiling.
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