The past couple weeks we have all gotten used to “bald mommy”. While Amos has yet to see me without my hat on (he asks before seeing me, “Do you have your hat on?”), Arland is completely unfazed by my lack of hair. I find myself being shocked everytime I look in the mirror. When I talk to people I feel like I have my hair, so when I see my reflection, it throws me a bit! But, as I said, we are all getting used to bald mommy.

Tonight I am writing my blog with happy tears in my eyes. I have made it to the end of this difficult road of chemo. Friday is my final round of 16 infusions! 16! This battle has been long, challenging, and tiresome, but I made it through. While I know I still have to get through at least a week of feeling sick, I believe it will seem more doable knowing I won’t have to go back and get hit with another round of the Red Devil. After two months of this drug, I definitely know why they call it that. Today I am finally looking ahead, looking at the next step, looking toward the finish line. And boy, does it look good.

As I continue on with my road map, I have the next few stops lined up. I will be having a double mastectomy and reconstruction in three weeks. The date is not officially assigned. After recovering from this, I will begin my next stage of treatment, radiation. This will be everyday for about 4 weeks.  All of this may change once I have my surgery and they see how my body has responded to the chemo, but for now this is what the road map reads. It helps me to know that I have only two more parts to get to a full recovery. So, I am not putting on the breaks, I am going full steam ahead. 

I have said it before and I will say it again, I am so thankful for my medical team. The nurses that have been with me every step of the way have been angels. They have guided me through the trenches of chemo and have even cried alongside me. It is an odd feeling to be so thankful that chemo is over and yet, I will be sad not to see my nurses weekly! I look forward to the day when I walk back in with Edwin on my hip and hair on my head and say THANK YOU, I have made it! 

My Marigold this week is completing 16 long sessions of chemo. I look back and remember my first session when I had my allergic reaction and the fear I had, then moving into 8 hour infusions, finally ending with the Red Devil. It has been a journey. One that has made me so strong and thankful for each and every good day I have. I don’t waste them, I celebrate them. Yes, my marigold is completing chemo, holding my bald head up high and marching in with a smile on my face. I can do this! Tiny but Mighty!

It’s been awhile since I’ve written last. While my mind has been wandering and piecing together what to say, my body has been too worn out to do much of anything, let alone type. I have successfully made it through two treatments of the “Red Devil”. This has been no easy task.  If I am being honest, it has been quite difficult, to say the least. I would say the hardest part has been the fatigue. I find myself up for just a few hours at a time and on the really bad days, I am lucky if I am up and out of my bed for more than 10 minutes. Along with the fatigue, I have been suffering with light nausea and body aches. Most of these side effects last only 3-5 days, but the fatigue lingers on and is only getting worse. I find myself feeling halfway normal by the second Friday and then I am off again to get hit with another dose of Chemo. 

We made a paper chain many weeks back counting down how many “medicine” days I have left. We call them medicine days for the boys, in hopes to explain chemo in a way they can understand. This past week, Arland took off a link of the chain and said, “Two more medicine days, a surgery, and mommy’s back to normal.” This broke me. I hope that it is that simple, that easy, that matter of fact. Because the truth is, this is getting long, it’s getting hard, it’s getting to be too much. And all though I am tiny, I don’t feel quite so mighty these days. I feel weak and worn out. I find myself wanting the days to speed up so I can be finished. Then I can find a bit of me again and get back to, as Arland says, normal.

Besides these side effects the one I have been anxiously waiting for happened. I lost my hair. It’s gone. Hardest thing I have done yet. We sat down with the boys before I shaved it and explained what was going to happen. I showed them pictures of other mommys that have lost their hair and I reassured them it would come back. I did everything I could to ease them from the fear of an unfamiliar mommy. Turns out there is no way to prepare them. Mommy looks different.  

The night we shaved it was beyond hard. I had lifted up my hair and noticed a huge bald spot and I knew it was time. Joe was so good with me, reassuring me that I was still beautiful as he shaved bit by bit off my little round head. Arland wanted to watch. He watched for a while and then was on to the next thing. I was glad he left; I had a breakdown and wasn’t able to be strong for him at that point. Our family never thought we would be here. There is no way to ever prepare for what I had to see as I looked in the mirror for the first time. Just like that it was gone and for the first time throughout this journey, people now know I am sick.

It’s hard for me to find that marigold this week. Within the walls of our home we are suffering from cancer, and within the walls of the world, we are all suffering with this quarantine. Life has been a challenge the past few months. Not only for our little family of 5, but for everyone. So, how is one to find the positive in that? God has graced me with a positive insight on life, so even at my darkest moments, I can see a marigold struggling, but peeking it’s way out of the snow. When this all started I was fearful I would miss out on my boys and their daily lives. Turns out I get bonus time with them. We are together now through the hard times, but it doesn’t matter because we have nowhere else to go, no one else to see, just to be together. That is beautiful and a gift I never thought I would get this year. That is my Marigold.

How is everyone holding up? This is new territory for us all as we commit to staying home and washing our hands! There are going to be times of frustration, irritation, and hopefully some times of laughter too! 

A couple of nights ago we had a “royal” dinner. We needed to spice things up from being home day after day. The arguing was getting to be too much. So, we set the table with candles and “goblets”, we practiced using table manners, and to make it more fun, we dressed up. The boys wore their knight costumes and yours truly put on my favorite dress and a crown. Our dinner became a feast and we became royalty. This is just what we needed to get out our “funk” for that night at least. 

It was a fun evening, and one that I am so grateful to have had. At the time I was just getting rid of the quarantine blues, but now looking back and hearing them talk about it, I realize we created another beautiful memory in this very uncertain time. You see, our uncertain time has been long since before this quarantine. We have been uneasy since November. But, slowly we are adjusting to every curve ball that is thrown our way. And one of these days we will breathe a sigh of relief again. I can’t wait for that moment.  Until then, we will accidentally make beautiful memories that will last forever, even though mama is sick and worn out. 

This past Friday I started the new chemo, “The Red Devil”. I was quite anxious and scared. I had to do it all alone. They no longer allow visitors in the back due to the coronavirus. In the infusion room, we are all vulnerable. I am so thankful for my nurses. I came in with tears in my eyes. My anxiety and fear had gotten the best of me this day. They immediately comforted me, reassuring me I was going to be ok. I knew they were there for me; they were my new visitors. 

The entire infusion lasted 3 hours. Significantly shorter than my last 12 rounds. After hearing about the side effects and getting the infusion, I was given this little gadget that was going to release a shot into me 24 hours from that time.  It was the size of a two inch box and was placed on my stomach. A little needle was inserted and 24 hours from that time, it would release a shot that would boost my white blood cells. This was so that I could stay healthy and strong until my next infusion (2 weeks from this past Friday). It was quite amazing. Yesterday at 3:30 it started to beep and then the shot was administered. I slowly took the “box” off when it was complete and now wait for my little white soldiers to multiply. I am so impressed with modern medicine. This was one more obstacle that I went through. Cross it off the list. One step closer to recovery. 

I will get my treatment every other Friday for the next two months. Only 3 more sessions! This number feels good. Right now the side effects are manageable, but I am told it will get worse. I guess I will keep praying for another mini miracle and hopefully the side effects will be better than I thought, and will allow me to be present for my family.

My Marigolds this week are my nurses. They have become my friends, my caretakers, and my support when I am alone. I couldn’t get through this without my medical team. They will always have a special place in my heart.

Today we celebrated. My chemo session was a success and I received my 12th and final treatment of carbo/taxol chemotherapy. It seems like yesterday we heard the news of my breast cancer diagnosis, and now I am 12 sessions in. We celebrated with pizza and family.  Next week, I start the first of 4 sessions of the “Red Devil”. It’s going to be a challenging two months, but I am ready to get this portion over and get me closer to recovery!

My Marigold today is my own strength! I did the first 12 sessions, even though I was so scared. And I am going to power through with all my might to get through these next 4. Yep, tonight we celebrated!  

I want to start off today by thanking everyone who has been praying for me and for my white blood cell count to stay up! Last week was another successful treatment. Tomorrow, as long as my white blood cell count is up, will mark my last day with this chemo cocktail. Starting next week, I will be starting a new chemo drug. They have an awful “street” name for it, so anyone who has undergone this type of chemo will remember this name. They call it the red devil.  It is very strong and will wipe out my immune system. The side effects are a bit stronger too. Fatigue and nausea will remain the same, but perhaps longer, and I may also experience mouth sores, changes in taste and texture of food, hair loss, and the oddest one of all, it will make my tears and urine red.  I will receive this treatment every other week for the next two months. A total of 4 sessions. It is going to take all my strength, my positive thinking, and prayers to get me through this. But I know I can. After all I may be tiny, but I am mighty.

Knowing that this change is coming has brought me great anxiety. It feels like the first time I started chemo. The unknown is overwhelming. Between this and that darn coronavirus, I have just about driven my husband and family nuts with my worry. I feel like fighting each day is hard enough, now add on the coronavirus! Needless to say, I am trying to find peaceful moments to keep calm, recenter, and breathe. 

I found one of these calm moments late last night. Unfortunately, my sweet baby has a cold. The bad news, he is up every half hour, the good news, I get a bit more face time with him during the night. Last night was particularly hard for him to get good sleep. However, because of his lack of sleep I had the most peaceful moment. Edwin was fussing in my arms and I was rocking him back and forth. It was dark, a bit chilly, and quiet, finally.  As I was rocking him, he looked up at me with his round little face and gave me the softest smile. I put my hand on his cheek and whispered I love you. Just like that while my hand was cupping his cheek, he closed his eyes. I snuggled him for an extra long time, knowing that this time goes so fast. It was quiet, it was peaceful, it was calm.   

My Marigold this week is the quiet time. The time when there is no talking, no worries, no noise. Just peace and quiet. The world is so loud these days. Finding the little moments where we can process what really is important and what we are truly thankful for is rare. So, when you find these times, use them. Sit quietly, pray, meditate, process.  For just that quiet moment can you really find peace, answers, humbleness. It’s all right there waiting for us. We just need to be still and listen. 

I have a new meaning for the term “face time” since my diagnosis. It has nothing to do with my phone, but rather the seconds and minutes I’m awake and literally face to face with my children. This disease wears me out and it makes me sleep for long periods of time. Time that I should be awake and face to face with my family. This precious time each day gets taken away from me. So I “face time” as much as possible, engraving their sweet smiles in my memory even if it is a difficult day for me. I make sure they see my face and my smile too, so as to never forget me. This is our new face time. If there is a day that is worse for me, I find myself telling Joe, I need them to just see my face. So I play with them, read a story, or just cuddle. I start to envision a meter going up and down depending on how much “face time” I have with them. I make sure they have seen me enough in one day to gain a memory, feel loved, and be at peace. Mostly never to forget me.  

Before cancer struck, I would have never felt like I needed to clock my hours of time with my children. In fact, I was probably looking for breaks. But, now everything is different. I need them. They make me stronger because I have something to work for. 

My sister made Edwin a sign for his room that says  “God Knew My Heart Needed You.” It is so true. God gave me these sweet babies so that I would have the strength to get through this awful disease. And, when my heart starts to feel despair, I get to snuggle and “face time” my 3 sweet boys.  God certainly knew what my heart needed.

Last week I had another successful treatment! My mom has called it a mini miracle and I agree. This tiny but mighty girl is keeping her white blood cell count up! If I receive treatment tomorrow, it will make 6 chemo sessions in a row! (make sure to pray and envision those white soldiers for me!)  After that, I will have only 5 more sessions before surgery. I am feeling very hopeful. Things are going better than we had planned. My body is staying strong and my mind even stronger.

My Marigolds this week are Arland, Amos, and Edwin. Even though I find myself worn out, I have to remember it is from regular life, as well as chemo! For crying out loud, I have 3 boys and one is just a baby! Nonetheless, they are my light, my strength, my marigolds. God knew exactly what he was doing when he gave me my three cubs. He knew without a doubt this is what my heart needed.

“The little white soldiers go marching one by one hoorah…hoorah.” Leave it to an early ed teacher to make a song out of this! My little white soldiers did just that this past week. They marched! Thanks to my grandma and her visualization of little white soldiers, I have somehow managed to keep my white blood cell counts up just high enough to receive treatment. They will not treat me if my count drops below 1.0 and the past two Fridays my count has been 1.4. This feels like a tiny miracle (tiny but mighty)! My sister Lindsey sat with me for part of the time last week and before they checked my counts, I said, “Let’s quickly visualize the little white soldiers.”  We both closed our eyes and visualized them marching. After this brief moment, we both laughed. She said she was picturing little white marching band men. I laughed because that too is how I was picturing them. All white, head to toe, with a drum and a little feather on their hat! How did we have the same image? Well, if you know me and Lindsey, you know we have lots of similarities! So this is no surprise. Is this how grandma pictured them too? Maybe grandma was sending us these images. In any case, here we are at my 8th chemo session and the results show that we are good to go for another round!

So here I am, over half way done with my first rounds of chemo.  I have mixed emotions. I thought I would be more excited than I am.  However, the thought of doing everything over again is overwhelming and exhausting.  While I have made it through, I am starting to feel even more worn out.

Things are slowly changing for me. Even though I have expected these changes, it is difficult to experience them.  I am currently waiting for my hair to fall out. This is going to be hard. I am nervous as to what the boys are going to think. Will it make them scared, nervous, or  pull away from me? I don’t want them to have one ounce of uncertainty when it comes to their mama, and this will very well make them uneasy. Everyday I have more and more pieces come out. I am just sitting here thinking, is this going to be the day when it is so noticeable that I have to shave it?  I think this might be the next scariest thing for me. I have no interest in seeing myself without hair. However, I have no control over this. This is a lesson I keep learning through this journey. I have no control over any of this. The only thing I can control is my thoughts. And even these I can’t control at times.  Joe has reassured me that I will be beautiful bald too. I am so blessed I have him reminding me of that, because right now I am scared. 

Finding my marigold this week was easy, I have been surrounded with a village of family and friends. From my parents, sisters, children, and husband, to my friends from then and now. This week I even had a visit from an old college friend that I hadn’t seen in over 5 years! I actually found myself thinking, “How did I get so lucky to have all these visitors and people in my life?!” Lucky is an odd word to use during this very unlucky situation.  However, this is just how I feel. Lucky and blessed to be visited, lifted up, and surrounded with so many wonderful people from my past and present. 

In my house we dance.  We dance when we are cleaning, we dance when we are playing, but mostly we dance when we hear a song that really moves us. You can’t keep our family still. Often times you will even catch Joe dancing alongside me and the boys. When we dance we forget our worries, we change our mood, and we feel free, for the length of that special song.

This week was a challenging week for me. No bad news, no extra side effects, but emotionally, mentally, it’s been hard. The effects have been lingering a bit longer, and the exhaustion has been challenging when it comes to keeping up with my three sweet babies. Anyone who knows me, knows it’s hard to keep me away from my kids. I have days now that just being physically up and present for them is hard. So, yes, the exhaustion has brought my spirits down. 

This week, as I sat on the couch and watched my children play, instead of playing alongside them, I could feel my eyes swell with tears. I feel like I am missing out on them as they grow this year.  Especially Edwin. He is already 4 months old! Am I missing his milestones? It’s one of those times where I just say This Sucks! I am 37 years old. I feel like I am missing out not only on my children, but also my youth!  I should be having wine with my girl friends, going on dates with my husband, and playing with my children. Instead, this past week, I have been too tired to do much of anything. I know, this too will pass, but this week has gotten the best of me…well, until last night.

Last night I was sitting in the living room listening to music with the boys when what comes on the radio….the song that always brings Joe and me to our feet. The song that makes me pick up my boys, spin them around, sing, and DANCE. Wagon Wheel by Old Crow Medicine Show was playing, and playing just for us!  We sang, we danced, we laughed, and we forgot about everything for the length of that song! Goodness, it feels good to smile. 

My Marigold this week, is the perfect song to make my family dance. The song that floods my mind with memories of when Joe and I first started dating, and the song that makes me get on my feet, pick up my babies, and dance around the living room!  Music is a powerful thing. That song brought me to my feet again last night. I am ready for another day of Chemo, another set of side effects, and another day to fight, so I can have many, many days in the future to dance with my family.

***Tomorrow is my 8th day of chemo! I will be envisioning little white soldiers marching through my veins and praying for my white blood cell count to be up! If I get my treatment, that will mark the halfway point for chemo this round.

My Grandma Niebur passed away from breast cancer when I was just 3 and a half years old. It amazes me because even being so young, I have such vivid memories of her. I can only assume this is because she was such a remarkable woman. She made an imprint on my life at only 3 years old. Her style, her kindness, and gentleness are just a few things that I remember and can still feel.

This past Friday was a big day for me. After being so discouraged the previous week that I didn’t receive my treatment, this Friday I was bound and determined to make those white blood cells come up! While I felt I had no control over bringing my counts up, I was told a story that may have changed it all! My aunt Connie shared a story with me about my Grandma Niebur. She said that her white blood cell counts would get low and she too would get discouraged. Grandma had told Connie that before her treatment, she would lie down, close her eyes, and invision little white soldiers marching through her veins! While this may not be scientific, she would find that mind of matter would bring her counts up. So, you can only imagine what I did before my treatment…. I closed my eyes, and then yes, I imagined little white soldiers marching through my veins. And just like that, my white counts were up!  Mind over matter indeed! 

This past week wasn’t just a good appointment because of receiving the treatment. My doctor also gave me some great news when doing my breast exam. She could tell my tumor had gone down significantly! While we still have a long journey and so many uncertainties, but this was a day worth celebrating. Thank you for your prayers!

I have so many marigolds this week. But the one that keeps pushing its way to the surface is my Grandma Niebur. I think back to the first days of finding out I have cancer and through every step, she has been here. She has been there with me in conversations with my dad and my aunts. She has been sitting alongside me in my doctor visits and when I have been rocking my babies to sleep. She is constantly on my mind. Even though I only knew her for 3 years, she somehow has become more than a memory to me. I have learned more from her through the stories the past few months than I ever thought I would. I have been given an opportunity to understand what my grandma went through and in a way, get to know her better. Our lives have become more parallel, all these years later. She had gone through this, and now she is guiding me. What a blessing to reunite with someone you only wish you had had more time with. 

Growing up I was always a mama’s girl. I loved being home and hated being away from my parents. I would be lonesome at every sleepover and my “Sunday Blues” before going back to school were the worst. Being home with my family was my comfort zone.  It still is. I find myself not wanting to be away from family since all of this has happened. It’s where I know I am safe and where I find myself forgetting for just one moment that I have cancer. 

Last week my chemo session went really well. They shortened up my time a little bit more (about 4 hours now) and I had no reaction.  I am, however, beginning to enjoy my time at chemo. I don’t need them to shorten it too much more! I mean, I have no guilt leaving my kids on chemo days because I HAVE to be there! The nurses are so comforting bringing me warm blankets and tea! It is like a spa day compared to being home with my 3 little bears!  At least, this is what I have convinced myself to think. The best part is I have had some wonderful visitors during my chemo sessions. So many friends and family that is hard to think of anything else but happy times. 

Yesterday’s session however, was not as good. I went in pumped and ready to start the process all over again. I had my 3 close friends with me cheering me on and then I found out my white blood cell count was too low. They could not continue on with the infusion. No chemo drugs again. I felt defeated. While the doctors tell me it is common, it makes me that much further from the finish line. Further from winning this race. Like I said, I felt defeated. The good news is I have so many people running with me and waiting for me at the finish line.

At a few of my sessions, I have had my mom and my dad with me. This is the perfect combination, because as you now know, I am a mama and daddy’s girl. Some things never change. When I am spending time with my parents, I don’t need to worry. They take care of me.  It doesn’t matter how old I am, I am still their baby. They are running along side of me.

I have found throughout this time of knowing I have cancer, I have relied on my parents stability and love so much. They have been pillars of strength for not only me, but my children and husband. The best part is that I get to spend even more time with them. Our conversations are deeper than they ever have been. And, when we finally find something to laugh about, it is a deeper than ever laughter. While the hurt and fear of cancer is palpable, it is easy for me to see that my parents are marigolds in this time. The gift of conversation, prayer, tears, and laughter are some things that I feel so blessed to have been given throughout all of this.  Even though it comes with so much heartbreak, I am flooded with emotion when I think about how I couldn’t get through this time without them. They too are my safe place, my comfort, my calm. They are my mom and dad. The first people who held me and took care of me. Here we are, 37 years later and they are still doing just that, holding me and taking care of me. Thank you Mom and Dad for being with me every step of the way. I love you.