Tag: Moffitt

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

Round 18 and more to come!!!

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Round 18, 54 days of infusions, over 56 days at Moffitt in the past 10 months, and more scans than I care to count…. BUT…. miraculously the Carboplatin and Etoposide continues to work and my cancer is getting smaller and there is no evidence of new cancer. (It is important to note that one cannot access the activity in the bones during treatment because as I understand it they inflame and are actively fighting) My body is handling the chemo well, yes I have a new normal and I don’t remember what the old normal is, but I can still handle this, adapt as the changes come, and be present with my squad. It is so weird to think I could be happy for more chemo, but, I am happy for more anything!!!

Yesterday was a super long day. I checked into Moffitt International Plaza at 8:30AM and closed the Infusion unit at Moffitt Main Campus at 9:30PM. Yes- I was again the last patient. We cram it all into one day because this minimizes our time away from the family and the potential negative effect on the family. Thankfully, I utilized Priceline to get a great rate at the Westin Waterfront hotel in downtown Tampa. This is about 25 minutes but gives us a little pampering- water therapy, city therapy and makes me feel like I am part of the real world again.

It was amazing to sleep with the lights of the city and the view of the bay. We started the morning at the Starbucks downstairs (YES- my weakness) and enjoyed it by the pool looking at the bay. Priceless- to have quiet Wallace time with no distractions.

After our outside time, I actually took my Steroids. Many of you know that for the last two rounds I have tried to limit or stop my steroids in the three days following day one of chemo because I hate (whoops- this word is not allowed in our house per the little kids), I mean dislike how they make me feel. However, after the last round I struggled bouncing back so I am trying the steroids again. They seem to help with the upset stomach and remaining colitis issues that were a result of radiation. I am hoping they help, if not I am going “steroid rogue” again on the next round of chemo.

In our relaxed state today, we headed to a BBQ place I found online. Many of you are shocked- Me going to a BBQ place, I have been a vegetarian since 7th grade with times of vegan and other more recent times with some fish. My husband is a meat eater and a chef- we both love new restaurants and I just eat what I can. The Deviled Pig was today’s new adventure. It is a really cute BBQ place. Wallace enjoyed his MEAT, while I had yummy sides. If you live in Tampa or visit, I would try it!

We are now back at the hotel resting. Due to the late chemo night yesterday, today’s infusion isn’t until after 6PM. One of my favorite benefits of these Tampa adventures is visiting with my dear friend. She is a light that I did not know I needed. I so love spending time with her. Those who know us both know we were classmates in middle school that lost touch for 18 years (I think!). After chemo tonight, Wallace and I have the pleasure of hanging with her and her husband for a bit. We will see if this bald lady can get in any trouble.

Thank you all for reading my posts and sharing them, cheering me on, believing in me, praying with me, staying positive, supporting my family and I, and most of all- Believing In Miracles!

His Face Said It All…

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Wallace’s face said it all. He just looked at me in disbelief, maybe a little annoyance, maybe fear…. It wasn’t anything huge… but it could be.

It is a Moffitt day and a long one. We left the house at 6:30AM and Wallace drove the 2 hours it took to get to Tampa. We had to go to Moffitt’s location that is farthest away from our house because it was the only PET scan appointment available that allowed us to do everything on the same day. We arrived here, checked in and headed to the Labs/Imaging waiting area. I immediately started organizing our stuff. I wanted Wallace to have the snacks (He gets hungry lol) and I needed my computer out of his bag. Within minutes, the nurse called me to go in for labs. Fifteen minutes later, I headed back out into the waiting room to wait to be called for my PET Scan. I immediately looked at Wallace and said, “please take the snacks out of my bag” and with the look of disbelief, annoyance, and fear he said “you mean the ones you gave me already”. I had no recollection that I actually gave them to him before I was called in for labs.

They call this chemo fog, chemo brain, and other things. All it means is your short term memory is effected as well as your processing. For me, it has been rough. I always remembered everything long term and my working memory was super fast. Now, I have to slow down and take my time to think through things. Word and short term recall can take me a bit longer. It is frustrating, but it is also scary because it will get worse with the more chemo I receive. It makes me very self conscious and inadequate.

The chemo fog goes away slowly when chemo stops, but some of it can stay. I know that my working memory, processing speed, word recall, and some oral reading has changed a bit. This is not evident to most around me, except to those closest to my heart. My husband and 21 year old notice the changes the most. They normally giggle through it all with me. With my husband’s encouragement, I now write a lot of lists. The challenges of the fog are most evident to me and bother me the most.

But….. his face said it all. I had no clue I had already given him the snacks. I know it is a busy and stressful day and that can add to my lack of focus. Yet, it is the fear of what the future holds that makes these moments have an impact that can’t be swept away with humor and giggles.

(I am now in the PET recliner where my Super Hero radioactive juice marinates for about 90 minutes. Then I will have the scan. Doctor and chemo are later this afternoon.)

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.