Tag: neuroendocrine

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

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.)

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)