Tag: slide

I Think I Lost A Week…

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I feel like I have totally lost a week. I think this always happens the week after chemo. It’s not like I have been in bed all day or anything.. I have been handling the treatment pretty well. Sure, I feel yucky at times and sore. My brain gets foggy and I am tired and irritable. I can’t taste things and my throat is burnt, but I can function and am participating in life daily. Having felt yucky so many times, I think I kind of accept this as a new normal and think of myself as okay and good as long as I am not horrible and totally incapable. I wonder if prior to chemo I would think of this as being bad- no clue- as I don’t think I honestly know anymore how it feels to be normal. People ask me all the time “How are you handling this round?” and I say I am ok. I have felt much much worse on this adventure.

The week after chemo is not a fun week. In reality, I finally feel pretty good the few days before chemo and somewhat invincible thinking “I can do this” and then after 3 days of infusions and Neulasta on the fourth day, I feel pretty useless. Those of you that know me, know that I am “energizerbunnyish” and do most things at a high rate of speed (especially talking lol). I struggle to just sit and watch tv, or rest. After chemo, being able to drive to get a cup of coffee a mile away is a challenge. Getting the kids ready for school, wears me out. Remembering passwords to simply shop online or check the bank balance takes too long and can be frustrating. It is mentally tough and hard not to get in my head and start to worry about all things cancer and future related. Are we doing enough? Is it working? Is tomorrow going to be worse?

For my Mom, husband, and my 21 year old, the week after chemo is a challenge too. They see me struggling and I think all we all can think about is the cancer. Despite the bald head, I think I fool them most of the time but when we are in the heart of the treatment it is tough. I think we all selectively forget because if we didn’t we wouldn’t be able to function on a daily basis. I do not think the fear ever goes away. We have no set plan, it is wait and see.

For my 3 and 6 year old, this is juts normal life. We have made my treatment a part of life. It is what Mommy needs to fight the big bug so she does it. When I got home from treatment, they inspected me (as they do every time) to see if I have my “beeper” aka on-body Neulasta and if my port has a band aid. Then for the next 24 hours, they check to see if the Neulasta is blinking and both beg to watch me take it off (there is no blood). They think it is kind of cool but just also want to be involved. Maddie always asks me at bedtime, “When do you go to Moffitt again” and I tell her how many more days. She is not fearful, she just wants to know when I will be away. When I feel yucky, their inquisitiveness and wanted involvement makes me sad because I truly feel no child should have to go through this. I hate the poor prognosis that predicts the future of them without me. I just wish this wasn’t our life. On the flip side, at these times, I also feel proud. Proud that my kids are strong, resilient, and learning to understand what is going on. Proud that Wallace, my Mom, and I have been able to find a way to explain “cancer life” to them at their developmental level with knowledge and not fear.

To say, the week after chemo is emotional is an understatement. But, as with all things…. the the fog clears, and a new week begins. This is when I try to force in everything I haven’t been able to do for the past 11 days… This week I look forward to a pediatrician appointment, an unplanned visit to Moffitt tomorrow, family friends visiting on Wednesday (YAY!), tie dying t-shirts with Maddie’s Kindergarten class on Thursday, and a date night!!

Did I really lose a week? No! I cuddled with my kids every day, read some stories, drove for coffee, had lunch with a friend, cooked dinner, went with Wallace and the kids to an outdoor festival, and saw Jenna Bush Hager speak on a “face time” like screen in Tampa with my dear friend. I was present. Life could be much much worse. (See, I am starting to feel invincible.)

Giggling through chemo…

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Therapy- “treatment intended to relieve and or heal a disorder” Humor- “the quality of being amusing or comic, mood, disposition, frame of mind” (Definitions sited from Google Dictionary)

On chemo days (and all doctor or what we call Moffitt days) we practice what my husband calls Humortherapy. It is our treatment, disposition, and frame of mind to relieve, handle, get through, tolerate, digest, and survive this life sentence that we call an adventure. Without jokes, laughs, giggles, and a positive outlook we would be sleeping all day, hiding under our desks or in the closet, and not living our lives. When we giggle, smile or laugh, those sitting next to us might think we are inappropriate, disrespectful, or that we don’t have as bad a situation as others. Please know no one has ever questioned our laughter, giggles or positivity- we normally make a lot of friends. I like to think our light hearted attitude gets us through the days without panicking about long wait times, schedules being thrown off, messed up doctors orders, risks of treatment, or this whole depressing situation. We take it as it comes and we giggle through it. I truly believe humortherapy keeps us going. I believe in GIGGLING!

I guess I should start by prefacing that I am writing this while sitting out side, staring at the Tampa skyline or some part of it. Tampa is a huge sprawling city. We have learned that if it is possible, staying in Tampa for the nights we have 3 straight days of chemo is therapeutic and necessary. Though we only live 90 minutes a way, driving at 80mph without traffic, it is a highly stressful interstate drive that adds a minimum of 3 hours to every day- normally more like 4-5 hours. This is exhausting when you go home to mommying and daddying (and feel yucky). Although Wallace isn’t getting the treatment- these days are just as exhausting physically and emotionally for him. We miss our kiddos, but we are much better parents when we come home rested on the final day. These hotel stays also allow me to rest, recharge,and spend some quality time with my husband.

Many have asked me what chemo days are like. I can tell you what mine look like, but please know this is just my experience and is probably nothing like my other cancer friends experiences.

6AM: We leave the house and head to Moffitt Cancer Center in Tampa. This isn’t a fasting day so we rush through the Dunkin drive through. (I am being inspired and guided by an old dear friend’s confidence in me to give up the bad stuff. So starting Sunday- only black coffee and no donuts. Ironically, I am super excited about the changes.)

7:30AM: Arrive at Moffitt. One of my favorite features of Moffitt is their valet system. You just drive up, hand the really nice valets your keys, and head in the building. We speed walk to the lab where I have my port accessed and labs drawn. Many probably don’t know what a port is and I didn’t know what it was or really didn’t want one, but it is my best friend now. It is implanted above my right chest (yes- you can see the outline of it and it isn’t pretty).It has a piece of vinyl tubing (just like the stuff I sold most of my life in the hardware store) that leads up to a vein in my neck and goes directly to the heart. My port aka best friend allows me to get all labs drawn, infusions, medications, fluids, contrast for scans, and probably more without having to find a vein and have an IV inserted. I can’t imagine doing this adventure without it- someday I will have to count how many times it has been used… chemo alone is 51, then any other lab draws, CAT scans, PET scans, MRI’s, hospital stays… For those who are nerdy like me and want to know more about ports, this article from Memorial Sloan Kettering Cancer Center has a great explanation:
https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

8AM: We head to the 3rd floor to check in with a doctor who is monitoring my bones to see how the bone metastases (mets) is effecting my bones structurally. He specifically looks at my shoulders, arms, hands, hips, pelvis, legs, and feet. I have had cancer that we know of in my hips, pelvic area, part of left upper leg, right shoulder. Some of this we eradicated (boy I love that word), some we knocked down and it grew back, some is new. For me, the bone mets is secondary to my pancreas and liver areas this means that most treatment will be for palliative (reducing pain) and or if I am at risk for breaking anything. We had a very positive visit. Bones look strong!

8:45 AM: We head to fifth floor to GI clinic for required check up before chemo is approved. Closer to 10AM, we are called in to see my doctor’s PA. She asks how I am feeling, we discuss any concerns, and go over lab results. All looks good, so she sends us on our way to chemo.

10:15 AM: We head to fourth floor to the Infusion center and check in. I leave Wallace with my beeper and head to first floor gift shop to get him a Snickers and me a juice. (Juice isn’t a norm for me, but I was feeling a little off balance) After a long morning, Snickers brighten him up! They are peanutopolis!
\pE-nut-ä-pu-lis\ (noun). A state of mind making you feel very strong and powerful, almost mayor-like. (Urban Dictionary)

11:15 AM: We are called back to be seated. The infusion staff at Moffitt Magnolia is wonderful. They make you comfortable, feel valued, and are funny, kind, and compassionate. We have our own curtained off cubicle- it is good size, I have a recliner and Wallace has a seat with a gravity type of back that he likes.

11:30 AM: The nurse comes in and checks over at home medications, how I am feeling, any concerns, etc. Then he starts my line into my port. Premeds come first: Dexamethasone, Aloxi (nausea), Emend (nausea), Pepcid, and Benadryl. The Premed’s take about an hour.

12:30PM: The nurse comes back in and puts on what I call a hazmat suit. A blue thicker gown with cuffs that covers the body neck down and ties in the back. Chemo drugs are toxic/poisonous among other things- yet with giggles I write this: they are being injected into my body via my heart. The nurse then hangs the chemo and after I check it, and another nurse double checks it and the settings in the computer and machine, I am connected and infusion begins. My first chemo is Carboplatin and this runs for 2 hours and my second chemo is Etoposide which runs for an hour. I was exhausted and full of Benadryl so I slept for an hour. My favorite part of Moffitt days is seeing my dear “nurse friend”. She knows who she is and she always boosts my spirits, validates my concerns, points me in the right direction, and brightens my day. Although I haven’t know you long “nurse friend”, I am so lucky to have you in my life and feel like I have known you forever.

3:45PM: The nurse disconnects me and removes the access to my port. I prefer being re-stuck every day. This allows me to shower easily, sleep comfortably, and also give both sides of my port activity.

4:00PM: We are at the valet getting the car and quickly driving to hotel.

4:45PM: Although only 15-20 miles, it takes about 45 minutes. I like to choose waterfront hotels because the ocean/bay rejuvenates me. I am an island girl at heart. When you are at Moffitt or any cancer center, I have found it feels like time disappears and although you are positive, it wears you down. I have been using Priceline to get low rates.

5:30PM: An early dinner by the water. (In the hot hot sun, Wallace humored me.)

My hubby in the hot hot sun…. Recharging

7PM: In my PJ’s watching reality TV. (Yes, he humored me again- he dislikes reality TV. (Can’t say hate because that word is a “bad word” in a house with little kids) Day 2 of chemo starts at 12:30 on Friday. Hope to post more after…

You should write letters…Really?

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When I found out that I had cancer, it was already Stage IV with a grim prognosis. I knew this by googling, but my primary oncologist did not mention time line, and I was honestly afraid to ask. At this point so much was unknown- biopsies were inconclusive, my liver was riddled, and the primary site was not found. I have learned that most people when diagnosed with cancer know right away many more specifics and even know what their treatment plan looks like. This is not my world. My first chemo had a 10-50% chance of working and it did, but then and now, I still don’t have a treatment plan. It is a knock it down and wait for it to grow and knock it down again kind of approach. The fact that I have knocked it down twice is miraculous.

So after just one round of chemo, my husband and I scheduled a visit to MD Anderson, the number one cancer hospital in the United States, thinking that if Moffitt can’t figure this out, MD Anderson can. Our visit to MD Anderson was the hardest experience I have ever had. We didn’t find any answers at MD Anderson, but we learned the grim reality. We were told statistically that people with the degree of cancer I had at that point lived about a year and also that I should expect treatment for life. This was the first time in my life that I could not stop crying. I don’t remember how long I cried but I remember not stopping. I remember the tears flowing through the lab draw, waiting for the shuttle, on the ride back to the hotel and more. I have never been so scared. This visit was very destructive to our hope, our lives, and just everything. I will write more on this later.

My reaction was calling my doctor’s nurse at Moffitt, telling her what I was told and scheduling more chemo as soon as possible. I now knew I had no choice but to fight but the fear took over. I was very broken.

When we got home and I told my friends and coworkers what I was told, many said make sure you start writing this all down, write the kids letters, etc. I tried. I started writing in all my free time and I cried and cried and cried. All I could think about was 1 year. I couldn’t get it out of my head. I kept pestering my husband with my fears and what should I do to get him and the kids ready.

It all hit a head one day when my husband was chauffeuring me home from work. I think I told him I needed to get to get the house in order, write more letters, figure out where my then one year old would go to preschool… and he just told me that I cannot worry about when and if I wont be here because if I do, I am not living. I cried yet again but it sunk in. I couldn’t focus on the end, because it was limiting my ability to be present and live. My family and kids need me know while I am here.

So, I haven’t written letters, but I will when it is time. I have stashed important emails, cards, pictures, etc. in plastic tote boxes which I will sort when it is time for the kids. But… for me it isn’t time yet.

Am I Just Going Through The Motions?

Why Fighting The Big Bug?

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You may have wondered why do we call cancer “the big bug” or why our go to phrase is “fighting the big bug”… well when I found out I had cancer five days before Christmas 2016 and spent the night in the hospital when I was supposed to be at the airport picking up my son who was flying home from his first semester of college, I was challenged with how do I explain this to my children. How do I make sure they are not fearful? But also how do I present it so I am not lying…

I have always been very open with my kids because I do believe with knowledge you can find understanding and strength and that the unknown is much closer to fear. As an educator and Mom, it was also very important to me to find a way to explain to my 3 year old what was going on because I knew her day to day life would be effected greatly. We needed a means of explanation that was not only developmentally appropriate but also one that she could connect to and that we could increase the depth of her understanding over time. It took me a couple weeks of over thinking and stressing until I realized that “the big bug” was the perfect way to explain it.

See, my daughter had unfortunately had pneumonia around Thanksgiving and she felt really yucky. My Mom, told her she had a bug and we had ended up talking about how a bug was not really like an ant, spider, or centipede in your belly but just an illness or even more simply another way to say you are sick.

That Christmas break I was really sick. My stomach was horrible, my liver not functioning well, and I was in a lot of pain. Wallace, Mom, and I were also beat emotionally and scared to death. All we knew was that I had cancer and it was in my liver- we were waiting until I could go to Moffitt Cancer Center on Jaanuary 3. As you can imagine, our life was far from normal. Those who know me, know I am an Energizer Bunny of sorts and this totally changed my abilities. I struggled to eat and I could not keep up with the family on a simple walk.

So, one day, I sat on the edge of the bath tub where I was at eye level with my daughter and explained that I had a big bug that was making me feel sick and yucky. She immediately asked if it was like her bug and I explained it was bigger and the doctors had to figure out how to get rid of it. I told her I would be going to a big hospital in a couple of days so they could figure it out. (I have always tried to talk with my children a few days ahead of events so that we would have the opportunity to keep talking leading up to the event and I can answer any questions they have and also to prepare them if I will be gone or if the schedule will change.)

So, as you can imagine my daughter asked me many questions in the next day or two- what will the doctor do? How big is the hospital? Will they make you feel better? As you can imagine, I could not answer these questions. I had never been to Moffitt before. So, I just answered honestly saying I don’t know, but I will tell you when I get home.

I have had lots and lots of appointments, tons of scans, three biopsies, port installation, endiscopy, radiation and lots of chemo. Through all this I have explained to my daughter now 6 about it every step of the way. My daughter knows my port is so I can get chemo aka special medicine that is like bug spray to knock the big bug down, she knows that chemo is the medicine I need to knock the big big down, she knows I get CT, PET, and MRI’s to see if the big bug is bigger or smaller, she knows the radiation was to shrink the big bug in my hip so I wouldn’t be in pain and lots lots more.

We talk through it all at her level. It is important to me that she has a positive perspective. We do not talk the mortality or the end game. We will someday but I am hopeful it will not be soon.

She asked one time, why is it called a “cat” scan? It hadn’t dawned on me that she thought it had to do with the meowing cat. She now knows that cancer is the big bug but we still call it the big bug. I never fully understood her comprehension of the whole thing until around Thanksgiving this past year, she was driving with my big kid and I and out of the clear blue from the back seat she asked something to the effect of, “Mom- what happened at Moffitt the other day, is the big bug smaller?” (I had a PET scan) and miraculously I was able to say “it’s smaller” and through the rear view mirror the joy in her face and her huge smile just said it all. I had successfully communicated to my daughter that this was not a short term illness, to expect ups and downs, and to take every small victory with smile. I think I have showed her perseverance, grit, and commitment. I am so proud of her!

As we approach yet another chemo week, we have already started talking. She knows I have chemo next week. She knows it will be for three days. Her biggest concern is if daddy will be able to take me.

My husband decided to read my blog…

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So…. I had planned to write this post last night, but fatigue got the best of me (it is amazing how your stamina changes after lots of treatment). So my blog went live on Tuesday night then almost immediately, I started to receive feedback. I was so excited in my hyper super excited state (many may argue I am always in this state), I began reading messages to my husband. I had shown him my layout before going live, and had encouraged him to read it, but he seemed disinterested. I honestly wondered if my posts would be too much for him to read. This is not an easy adventure…. Well, I was wrong and my reading of responses to him must have made him excited, because on Wednesday morning as he was laying in bed half asleep, he asked how do I find your blog….

I thought he was forwarding it to someone, maybe sending it to his Mother, but no he was reading it and really reading it. After we got the kids off to school, he started to show me my spelling and grammar mistakes. I fixed them all. At this point in my head I was thinking if you would have read this when I tried to show it to you before I published the site, I wouldn’t have made typos…. I hate typos. But then, he told me to look at my About Me section and said something to the effect of- you haven’t been diagnosed with Pancreatic High Grade Neuroendocrine Cancer for 28 months. You aren’t telling the whole story, you are simplifying it. Then he encouraged me to write the whole story of my diagnosis because the simplicity of my current diagnosis does not explain the adventure we went on for the first 19-20 months where despite a couple biopsies, tons of pathological tests, scans, lab work, genetic tumor tests, 2 major cancer centers and many doctors no one could tell us definitively what type of cancer I had nor where it started. All we know definitively was that it was small cell, very aggressive, that my liver at initial diagnosis was 60-80% compromised and the odds were stacked against us. A third biopsy in the summer of 2018 (after the cancer grew and spread), confirmed the high grade neuroendocrine, and then the pancreatic primary site was only deduced when I visited a 3rd major cancer center in December 2018. I will post more in detail about this in a later post. It has been an adventure where unknowns have been more common than knowns, where I was lucky enough to have a pioneer in the cancer world find chemo that worked for me. I cannot wait to tell you about him.

My husband wants me to share the details- good, bad, and giggle worthy of the whole adventure. And my favorite comment just a few minutes after publishing my site was from my 21 year old (at college) who simply wrote “I am proud of you”. Words cannot express how grateful I am for my husband and kids who support me being me, bald or not. (Let’s see if he reads this before I post it, I am getting ready to hand the computer over…..) He did!!!

P.S. Thank you all for reading and commenting and most importantly for your prayers, positivity, and support. Last I looked I was at over 900 hits (I know I account for at least 40…. I check it often LOL)

You think I am AMAZING???

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For the past 28 months, not two days have passed when someone hasn’t told me I think you are amazing, you have the best attitude, you are so positive… And all I can think in my head how in the world can having “a death sentence” aka incurable cancer be amazing. I am not finding the cure for cancer, I am not teaching children how to read, I am not feeding the hungry, I could go on and on. All I am doing is living the only way I know how and that is by looking forward, by having HOPE, by trying to be the courageous, hands on, and driven woman and Mom that my husband fell in love with, by trying to be part of every aspect of my children’s day, by not giving in and not giving up. I am not amazing, I am just moving forward and trying to tackle every fear, every doctors appointment, every infusion, and every scan with the same GRIT, courage, and determination that I want my children to have when they grow up.

My children are being dealt a future that is not fair and not right. No one should have to watch their mother fight a incurable- ultimately terminal- illness. And at this moment my children know I am FIGHTING THE BIG BUG., they know I am weaker than I used to be and there are things I can’t do. They are part of this whole adventure. They learn by example. They know I am strong, that I don’t give up, and I hope and pray that I am providing the foundation of the strength they will need to persevere through the future.

I am not amazing. I am a Mom and a wife who has HOPE, who believes in miracles, and is battling highly aggressive incurable cancer. I have no other option but to be positive and keep moving forward.

It will not be ok…December 20, 2016

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I will never forget the words, “It will not be ok” although they may have been “you will not be ok”. My response to the doctor in the ER was, “it will be ok” and she replied “it will not”. My life changed in an instant. I was no longer in control of my life (my son just turned 1- how could I have cancer- let alone cancer that metastasized). My husband, my children, and my Mom’s lives will never be the same. Since that day, December 20, 2016, when I went into the ER with abdominal pains and came out with cancer that had already metastasized/spread to my liver, our lives have revolved around cancer and the fight to keep me here.

Over the past 28 months, I have learned that I will have some form of treatment for life. That statistically when I started life expectancy was 1 year but I was younger and healthier than those who are typically diagnosed. That my cancer (which took 2 years) to fully diagnose and identify the primary site (site where the cancer started), is incurable and inoperable. I have completed 16 cycles of chemo equaling 48 days of infusion which equates to over 11 months of treatment. So far, I have beat the odds and knocked the cancer down twice. But, it has come back again and spread more and I am back in chemo.

There is so much that I want to share, but I will take it slow… My life has changed monumentally- the only thing that is important is being here with my family, being present, and making memories.