Tag: livingmybestlife

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.

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!

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.)