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.
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 to myself all the time, “you can’t make this stuff”….
Being told you have metastasized cancer at 39 less than a week before Christmas. (Dec 2016)
Finding out you have cancer with a 12 month old, 3 year old, and a college Freshman. (Dec 2016)
Being told your biopsy is inconclusive and they have no idea where cancer began and/or what type of cancer. (Unknown Type: Dec 2016-Aug 2018; Unknown Primary: Dec 2016-Dec 2018)
Having 3 oncologists during your first month of treatment. (Jan/Feb 2017)
Being told surgery isn’t an option because the cancer is too far spread in liver and/or most will not do liver surgery if liver is not the primary cancer. (Feb/March 2017)
Coming to the understanding that a liver transplant is not likely for a metastatic cancer patient but available to those who drink themselves into liver failure can get one. (Feb/March 2017)
Starting “empirical treatment” that has a 10-50% chance of working because after a month of tests, you can’t wait any longer to start treatment. (February 2017)
Being told there are really no other options than treatment for life, that remission is unlikely, and statistically you have a year to live. (March 2017)
Finding a cancer pioneer, who believes and knocking the cancer down after 7 months of treatment which was totally unexpected. (February 2017)
Finding out that your oncologist, your believer, your miracle worker, was killed in a car crash after a lifetime treating patients (March 2018)
And this was just part of the first 14 months…
I have never felt more broken than I did when I realized that there were very few options for me to fight this cancer. It was almost three months into chemotherapy while being treated for a cancer that could not be identified despite two biopsies that we made the trip to MD Anderson, the #1 cancer hospital in the US, for a second opinion. We thoroughly expected that MD Anderson would have answers for us. We had high expectations.
The trip did not go as expected. I have never been more broken than that day in late March at MD Anderson when the doctor who we had hoped and anticipated to give us more treatment options and answers, told us that there were not many other options, that I had a highly aggressive disease (way different from that of “famous” pancreatic patients like Steve Jobs), that no surgeon known would operate on a liver that is 60-80% compromised, and that I would have some form of treatment for life. That statistically someone with my disease would live 1 year but that the longer I lived the better chances I had.
My husband has described this visit as destructive to us and it was. We always believed we could tackle anything and here we were being told we couldn’t. We felt helpless and severely broken. All we could think about was the cancer. All I could think about was that my then one year old son would never even remember me or know me. I was fixated on the pain that my family would go through and the fact that I would not be with them. I fixated on the fact that my kids would end up with another Mom and my husband another wife. I didn’t get any new solutions or answers, I was given a sentence.
My reaction although broken was to call my doctor’s nurse at Moffitt. In tears, I explained I didn’t want to wait 2 weeks for my next chemo appointment and that I wanted to start next week. I explained what happened in Houston and she set up my appointments for the next week. I am so lucky that she understood my need to get chemo started quickly.
I was so scared for my appointment with Dr. Williams. Fearful that he would agree completely with MD Anderson. It was April 7, 2017, My dear friend and old math teacher, drove me down for the doctors visit and chemo. My husband had to work because he had taken a week off to go with me to Houston. We were sitting in the exam room when Dr. Williams walked in. He pulled a chair up and sat facing me and said “Why are you here?” He knew I had went to MD Anderson and was back a week early to see him. In tears, reading from my notes to help me keep it together, I explained what I had been told, and that I needed to start treatment quickly because I needed to fight this because I need to be here. I told him I needed a miracle. He looked me in the eye, and told me “I Believe In Miracles”. He did not discount anything I had been told in Houston but he was hopeful. As he walked out, he patted me on the shoulder and said “you are in the right place”.
Dr. Williams never discussed time lines with me and/or the mortality of the cancer, he encouraged me to fight it. He was a man of few words. I knew if we had to discuss the end we would and that if I needed to prepare my family he would tell me. His belief kept me focused and fighting.
Dr. Williams is the reason I am still here. He found a chemo that worked when we didn’t even know what kind of cancer I had. He guided me in knocking a cancer down that no one ever expected me to. He BELIEVED when many wouldn’t.
I wish I had more time with Dr. Williams and knew him better. He was killed in a car accident on his way to Moffitt in March 2017. I did not know until after he was gone, that my doctor was a pioneer in the cancer world. He was the first Black medical resident at Tampa General Hospital and worked at Moffitt since it opened in 1986. https://www.legacy.com/obituaries/tampabaytimes/obituary.aspx?n=charles-canaan-williams&pid=188652765&fhid=16800 .
I was lucky that Dr. Williams chose to treat me. As I sit in the chemo chair, I like to think that he is looking down on me, helping me fight, and cheering me on.
I am here, because he believed in me and he believed in miracles.
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.)
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…
