Tag: cancer

Knocking Down Cancer!

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Last week I saw a video on Facebook promoting the Miles for Moffitt walk on November 23, 2019. In that video I recognized so many people who work at Moffitt that I see each and every time I am here for treatment. My first thought was that I have been doing this too long. Today, when I was in blood draw and realized I knew the majority of the people there (and there is a lot), I realized that this recognition and the relationships I am building are an amazingly good thing because put simply the more people I know and recognize, the more time I spend at Moffitt, the longer I am alive.

Yes, you can find the positive in anything but coming to Moffitt is not a negative. Having cancer is a negative and now for me a fact of life. Being able to keep coming to Moffitt and keep fighting this cancer is a positive because it means treatment is working and I can still be with my family. I am very positive today (and I am not always- fear of the end is always on my mind) because my chemo is working and my cancer has shrunk to little to none AGAIN!!! This is a little surreal because this will be the 3rd time we have knocked my cancer down. Today I am having my 6th round of Carboplatin and Etoposide and it is still an effective treatment even after my lifetime total of 16 rounds of Carboplatin and Etoposide and 4 rounds of Gemzar and Abraxene. I feel super lucky today- not only is the chemo working but my body is strong, side effects (knock on wood) are tolerable and I am even growing hair back even if it is gray.

Although this is a great day in our cancer journey, this adventure is not over. My cancer will grow back. We just do not know when. After today, I will probably have 2 more rounds of Carboplatin and Etoposide then a break. The length of the break or vacation from treatment will depend on how quickly the cancer comes back. Last time, I had four months from the last day of chemo until the scan that showed new and more cancer activity. I hope and pray I get more this time, but even if I just get 4 months, that will give my body time to regain strength and fighting power.

Many people ask and I do too, what can I do on my “vacations from treatment” to maintain or keep the cancer down and there isn’t anything. There is no research that supports single agent immunotherapy use for small cell Pancreatic High Grade Neuroendocrine Carcinoma. There is some research using clinical data from under 30 patients that show a response when using two immunotherapy drugs together which we may try in the future when cancer grows again. So, the planner in me, knows that during the upcoming break from treatment I will get my body stronger and ready to fight again and I will play hard with my family.

Today, I am lucky! I get to build relationships at Moffitt because it means that I can tolerate treatment, that I can beat the odds, and that I am still here.

Water therapy after chemo...priceless.

Mute No More…

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I have been mute for about 4 weeks and I apologize. I am not sure why I have been so quiet, but it has been a very busy month and life got ahead of me. We have made lots of memories. Maddie graduated from Kindergarten, Jamon (the big kid) returned home from college for the summer, I was able to go on a Girl Scouts field trip, and we spent lots of time just spending time.

I am back in the chemo chair, today is day 3, and my final day of round #5 of this “stint of chemo” aka round 19 overall. I am doing well tolerating the chemo and just a little beat down and fatigued.

It’s amazing how I forget what chemo is like in just the few weeks between each round. I forget the soapy taste I get in my mouth, the rosy cheeks from the steroids and Etoposide (chemo drug), the foggy brain, slightly blurry vision, lack of concentration, yucky tummy, and lots more. A friend once told me that she was told by a friend going through chemo that it was like all your thoughts were on sticky notes and these notes were scrambled all over the wall. This is so true.

It is all tolerable but annoying and it gets old. But, all we can do is giggle through it. If not, we would be angry and when I am angry, I shut down even more.

So, let’s talk about food. After chemo, everything tastes funny. Well, I should say after all the chemo I have had my taste buds seem permanently effected. However, the days after chemo are the hardest. For me, I have to eat. If I don’t I feel worse because the food seems to help me tolerate the chemo drugs better. Heavier basic foods like baked potatoes, plain pasta, cream soup, noodle soups, bagels and fresh fruit and veggies like tomatoes and avocados are usually what works the best. I do like it to have flavor though that can mask the soapy metallic blah flavor the chemo leaves in my mouth. I cannot tolerate fried foods, fishy foods, or heavily cooked foods. Even wild never frozen salmon that I like is super fishy in this time frame and super yucky.

Ironically, every time it is a little different though. Last night, we went to dinner at a Mexican restaurant here in Tampa. Those who know me know I enjoy a good Margarita. I took a sip of my friend’s beautiful purple Margarita (no clue what kind it was) and wanted to gag. Then after seeing an amazing looking big glass of chocolate pudding with homemade whipped cream being served to another table, I had to have one for dessert. I thought it was the best thing I had eaten all day. Creamy, chocolaty… YUM!!! I noticed my tablemates were not as eager to eat it as I was and we didn’t finish it. As we walked to the car, I looked at Wallace and said “wasn’t that pudding amazing”. He proceeded to tell me it was pretty yucky. It was gritty and had too much cinnamon and nutmeg in it. Mind you I didn’t taste that. All I got was a smooth sweetness that masked the soapy yucky taste in my mouth.

Today, trying to stay hydrated is a challenge because the water tastes like the plastic bottle, but I am trying. I am pledging to my friend Stephanie that I will start juicing again this week. I need the nutrients and immune support. No more catching my kiddos crud.

More posts to come, no more being mute. Day 3 of chemo is over. The adventure continues with a PET scan at the end of the month and more chemo the first week in July. Thank you for all your prayers, positivity, support, and encouragement. I will be mute no more. #webelieveinmiracles #fightingthebigbug

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.)

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)