Tag: health

It will all be “fine”.

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It’s been just over two years since I sat in that cold chair and received my stem cells after such a high dose of chemotherapy that it would have otherwise taken my life. Two years since I fought harder than I ever knew I was capable of. Two years since I said goodbye to my kindergartner, my three year old, and my four month old, choosing to become my own hero when they needed me most.

It’s been two years since I truly learned the depth of my husband’s support, and how my family showed up for us in every possible way. Some days, two years feels like a lifetime ago. And yet, it’s astonishing how often it still feels like just yesterday.

I had my annual imaging completed on December 9th with the results of “Ill-defined soft tissue thickening in the anterior mediastinum, slightly more conspicuous” . Within 10 minutes of the results hitting my my chart, I received a message from my oncologist assuring me that my results looked good and that we would discuss more in person later that week. I screen shot the results and message to Terry and headed into work with the anxiety slowly rising. 

At my appointment 3 days later, we discussed the images in detail. We talked how it was believed that the spot in the chest that was seen was most likely to represent thymic tissue than the return of lymphoma. Although we didn’t believe the cancer had returned, additional and more intense imaging would be needed for confirmation. I was scheduled for the next available spot which was 2 days before Christmas. Although I didn’t want to spend the days leading up to the holidays at the cancer center, I was relieved I would have my results before Christmas. Funny thing in life is when you plan, things are bound to happen and in this particular instant I was unable to get scans completed. So almost four weeks later (and the beginning of the year) I am sitting in the closet waiting for my “medicine to marinate” for my PETscan. (Cue the reason why I have the time to update- no work or kids for an hour while I wait). 

While I sit in silence, I can’t help to reflect on the drive into the cancer center today. It was a quiet reminder that even as time moves forward, the anxiety and the constant unknown never fully disappear. It put things into perspective—how easy it is to get lost in the daily chaos and routine, and how, without realizing it, the most important things in life can slowly become buried beneath it all. And for that- I am grateful for this reminder. A reminder of the importance of family and friends and how nothing is ever guaranteed. So here I wait, another 30 minutes for results that I know will be “fine”. [My favorite word]

Promise I’ll update once we have the results and I talk to my BMT team next week. But I promise everything will be “fine”- because truly there isn’t another option.  

a little bit of normalcy

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Life is great. Let me repeat that sentence, our life is great. I recently had to rethink the way I thought about this current time in our lives. We were (still are) caught up in the day to day race that many families experience every day- getting the kids to school, after school activities, and therapy  while also trying to have a meal on the table and bedtime before midnight (joke, our kids go to bed WAY before midnight). We are exhausted and drained, but our life is great. We are healthy and our kids are thriving having both Mom and Dad home with them. One year ago, I would have done everything possible to be in my shoes today, to have the energy to take my kids to school and today I am able to. Do I still get exhausted after completing the morning routine and dropping off the kids at school? Yes. Do I have to sit down and rest more throughout the day? Yes. But I am present and back to my full time Mom job- which feels so right. 

This past summer was both one of the hardest and best summers of my life. I was able to spend time with Emery, Rowan, Kanan and Roxy that I wouldn’t have been able to if it wasn’t for my diagnosis. I was able to rebuild my relationship with Emery and Rowan and create a new one with Kanan. It’s crazy to think that before this summer, I truly wasn’t ever alone with all 3 kids by myself except for a small period of time. I was tested. My strength and stamina were tested. But my drive to have a great, unforgettable summer with my family, was stronger. And we had the best summer. 

In August, everyone started school for the first time in 3 years. This was a hard adjustment for everyone, but after a little over a month later, everyone has adapted. I have also recently returned to work, starting part time with the goal to return full time in the future. 

In regard to health, I’m doing “great.” I still have to be cautious of sickness around me (which is ironic with little kids), but I’m trying my best to distance myself when needed. My fatigue level is still higher than I would prefer, but I am reminded that it will take time. I still find myself getting sick some days, but according to the BMT team it may be due to long term effects on my GI track from the conditioning chemo, so I will continueto take the good days as they come. And there are SO many good days to be thankful for. 

So now what? We continue to live our lives as much as possible. I have an oncologist  appointment this week where I will have labs drawn and immunizations. Hopefully, it will be a smooth and easy appointment. Last time, I brought all 3 kids to the appointment so this time shall be “relaxing” compared to the last. We hope that things remain quiet the next few months. We will have more scans and workups when we approach 1 year in December. Until then, we will live life #onedayatatime and enjoy all the fall activities possible. 

“Fishing for a little bit of happiness”

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Ya’ll… I been waiting for some good news to share and TODAY seems like the perfect day… 

After 180 days post transplant, I FINALLY had good PET Scan Results. Some may even use the term, fantastic when describing them… and I plan to use that word all day, every day. 

In all seriousness, these are the results that we have been waiting for. Previously, there was a reason why I hadn’t posted for a while as I didn’t want to dwell on the bad. My first scans, that we did around Day 100 came back “improved” but still have spots that were lighting up. The spots were less than my liver, but the team was still concerned that they didn’t fully disappear after transplant. We never gave up hope, but the waiting period the last three months have been debilitating. I found myself having trouble sleeping and the constant thoughts of concern keeping me up at night. (Also, a 4 year old who has decided that he rather sleep on the floor than his own bed could also be a contributing factor). BUT we now can breathe some relief as the 6 months scan looked great, fantastic! 

In regards to my current life and health besides scan results … 

I have been trying my best to adapt to be a full time Mom again while balancing daily life and trying to stay healthy. The past few months have been everything I hoped for and more. I have been able to bond with Kanan and spend quality time with Emery and Rowan. (PS- Emery gave me a mother day writing prompt from school, and she loves me so much because I help her get dressed every morning. Who knew getting a 6 year old dressed would mean so much more than buying her ice cream lol 😂) 

With all the fun activities comes exhaustion. Exhaustion that I have never felt before. There will be times that I am playing with the kids or picking up a drive up grocery order and I will have to pause due to exhaustion. We are starting to see long term side effects of bone marrow transplant as I try to be more active every day. I have undergone additional lab testing in attempt to find the culprit. We have determine that I am currently in post menopause (lucky me) and that my thyroid is still not where they would like it to be. We have appointments with various  specialists in the next few months to help address ongoing issues, so hopefully their expertise will help us get a plan developed. 

I have started venturing out in public- sometimes even without a mask- which seems just weird to say out loud. I have been instructed to “be smart, stay safe” but also live my life. I have never been a better patient before today. 

AND…. The best, most unexpected news today that we haven’t even been able to tell family yet…. 

NIH called and my most recent NIPT results are NORMAL. Normal. Yes, normal. No abnormal results that would point to possible cancer.  Let me repeat, normal. Yes, they told me this could change at any time but today we celebrate and maybe break open a bottle of wine. (Remember, the instructions to live my life?) 

Some may ask what does this mean for us? It means that we continue to live our lives as much as possible. We know how short life can be and how nothing is guaranteed… even now, especially now. It means that we live more and love harder. We will celebrate every little small thing possible- even if it didn’t turn out how we planned. It means things that we plan to do in the far future, are better fit for today. Because shoot, after all these years I, no we, have finally learned what is a plan, if you aren’t ever able to live it out? A broken dream? A broken promise to yourself?

I plan to continue to take things easy right now. I am only 6 months out from my BMT and my body and soul are still recovering- physically, mentally and emotionally. But it does mean, I might even find some stillness in the chaos – and even find myself “fishing” for a little happiness. 

Day 98!!

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Early Bird gets good results? Spending Day 98 in my “closet” with radioactive material before the sun has risen for the day. Scans and appointments today then a bone marrow biopsy on Thursday. My BMT teams may have a different idea of celebrating 100 days than I do but I guess we will just have to make time to celebrate afterwards. 

—- 

In other news, I am officially back to Mom duty and I couldn’t be happier. Okay, this Mom duty is not even half of what I did beforehand but I get to hug on my babies and tell them how much I love them… in person! Thank goodness Terry can run our household with his eyes shut, because I’m more there for a high five and let me hold the baby so you can chase the other ones lol. Just kidding on the chasing, but just know that Terry has definitely earned a spot in the running of best Dad and Husband award for everything he does for our family. 

Hopefully as time continues, I will continue to get stronger and gain more energy especially since my kids have a list of things for us to do once “Mommy gets better”.  Currently Rowan has saved a $1.50 for us to go on the train that runs thru downtown LS, the beach, Spain and Disney World since he completed potty training while we were away. I’m somewhat regretting that I offered up a trip to Disney World as at last ditch effort of potty training before us leaving the kids. But then again, I’m so happy that maybe it was worth it.

As I sit here today, I am so thankful for my family and those who have helped us along the way. This journey hasn’t been easy, there are still days where I can’t eat because of the nausea. I find myself dozing off at times and forgetting what I was going to say but I know with each day that passes it will only get better. 

Which brings me to the present. I am currently waiting for my scans this morning, which will be the first scans since the bone marrow transplant. Then the rest of the week is filled with appointments and bone marrow biopsy on Thursday. We won’t met with the BMT team until the end of the month but the anxiety of all this can be felt now. There is so much unknown including how I responded to my transplant. Weekly blood tests are great, but this has the ability to show us things that blood cannot. It can also show us so much good and positive things as well. Time will tell the ultimate truth, but if it’s anything close to the high I’m currently riding from being with my family, I know we will only have positive things ahead.