Sorry this is a few days late. I had my teleconference with my sarcoma specialist from the Mayo clinic on Thursday afternoon. I planned to post that night, but with having labs, a meeting with my local oncologist and chemo also that day, I was tired….or so I thought. I felt exhausted but thanks to the lovely bag of IV steroids I got along with my chemo, my body was exhausted but my mind continued to race. I didn’t fall asleep until about 0400 and then got awakened by my alarm to get Lily up and going for school at 0645. It was a short night and even though the day after my chemo is usually a good day for me, going on barely 3 hours of sleep was not optimal. I got lots of sleep last night….dreamless even…so feeling better today.

My specialist went over in great detail my CT scan results from my chest, pelvis, and abdomen. It is stable. There were some micronodules that were new in my lungs….less than 3 mm. They could be several things but are considered unterminate right now. They could be a reaction to the meds I am on…or they could be new growths due to the meds I am on not working as well anymore. Basically we won’t know until we wait and do the scans in 3 months’ time. The blood clot in my lung is gone but I was told that as long as I am actively treating my cancer (so probably up until the end when I go on hospice) I will be on the blood thinners. So the plan is this: continue with the current treatment until February. I will always be on the blood thinners and the zometa (the IV medication for my bones). In early March I will have my regular 3 month scans. If all is stable, I will have earned a chemo holiday. I can’t be on nothing…too dangerous with LMS. I will go on hormone therapy, most likely aromatase inhibitors to cut off all estrogen and progesterone in my body. Because I have one ovary left in me (but incased in an inoperable tumor), they will most likely give me monthly shots to make sure it is not working on any level. Blood tests have somewhat confirmed this but we want to give me the best shot to see if the AI’s will work for me. In some LMS patients, this is a magic trick and they get a lot of shrinkage. For others, their LMS cancer just grows out of control. I am highly receptive to estrogen and progesterone, so I am hoping it will help. But as always, it is a crap shoot and we won’t know until we give it a try. Now if the scans are not stable in March, that is a different ballgame. I will then not be getting a holiday…I will be making a choice with my sarcoma specialist of the next chemo agent to pick, while still trying to give me a good quality of life. So there it is. We wait until March unless I can’t tolerate the Doxil for the next three months. I have an echocardiogram scheduled the first week in January to make sure my heart is staying healthy. Doxil will eventually attack your heart and I am getting close to the point where it could happen. So all in all, in case you were wondering, this is good news. They doctor is happy with where I am at right now. I have had a stable year and I am leading an active life (although not as active as I would like). Honestly, it could have gone so much worse this year and I have been stable. This is a blessing. I asked him about the COVID-19 vaccine and he said to take it the first time it is offered to me. So I will. I would love to get my life back a bit.

My sons and daughter-in-law are going to get tested prior to coming home this next week. They will each be here a short time, but I will take whatever I can get! Tim is trying to stay busy during his break in his master’s program…he has been in school full-time, non-stop since May, and is now lost with the free time when he doesn’t have to study. He is half-way done! Joe has been working as a firefighter for three weeks now. He had his first 24 hour shift at his full-time gig yesterday and then his first 24 hour shift at his part-time gig Saturday. He’ll have Sunday off and then work again Monday for a 24 hour shift. He seems to be enjoying it so far. Michelle is doing great but ready for a bit of a vacation. Lily is on her semester break and curious as to how her spring semester will pan out schedule-wise. Rich is plugging away at the store. They had 24,000 lbs of weights delivered this week and a number of bigger fitness equipment….all in time for Christmas and New Year’s resolutions. We are short-staffed right now and I am not in a place where I can go work retail on the floor, unfortunately. But all seems to be going well for all of us…again a blessing after this crazy year.

Thanks to the Miller family for a plate of goodies, and for MeiLing Marshall’s goat milk soap (which I nearly took a bite out of because it looks like peanut butter and chocolate fudge – to my defense, Rich thought the same!) and her gift that is under the tree awaiting Christmas. My awesome husband has planned a trip for himself, Lily, and I to go to Beaver Creek, Colorado during the 2nd week of January. Tim will come down to join us at a lodge. I am going to explore and take photos and walk. They will ski two of the days and we will all do a snowmobiling trip up to some beautiful sites near there on another day. It will be nice to get away. We’ll be gone 6 whole days (minus 2 for driving). I can’t wait! It will be nice to get a trip in before my next round of chemo. We are hoping to take some more of these as time and my health permits. I feel like I have lost so much opportunities for travel due to COVID this year when I was feeling good, which was really frustrating. Something to look forward to! I love snow and the cold….and the mountains. Can’t wait!

Here is a quick note to acknowledge some people who are wonderful!

Thanks to Michelle Krueger for a plateful of goodies and packages that are under the tree for Christmas! She is a gem among friends and I am blessed that God set her punching back next to mine (or vice versa!) Thank you to Amy Johnson who sent me my favorite chocolate treats to our door! Sooooo yummy! Thank you! To my mom, who made me some hot pads with character (a reflection of my character). I use them everyday for hot pans coming out of the oven! Thank you! To Catherine Schroeder, who dropped off a gift to me at our store….and it is under the tree waiting for Christmas! Thank you! For Mr. and Mrs. Lois Doyle, who send me uplifting, spirit-filled cards every other week or so. I am humbled to know you for over 30 years now. You are a true blessing. And last but certainly not least, thank you to Kathy Martz (who even sported her Patriots hat to my house) for these crafty treasures below. I am so thank you you are in my life!

December 17, 2019 – A year ago today I had my first chemo treatment. I took a picture for my family to let them know I was fine and fighting. I had blonde, straight hair, makeup, and you could see my smile. Rich was able to spend the whole time with me. It was scary, going into the cancer infusion center at Bergan Mercy for the first time. It freaked Rich out a bit. There were a lot of really sick people in there….the cancer patient you think of in movies…no hair…skeletal thin…and with that weird grayish-yellow tinge to their skin. I looked so healthy in comparison. Little did we know I would mimic that look (minus the skeletal look) within the next month or two. My first chemo combo was not good to me. It shrunk my tumors but nearly killed me because of a crazy lung reaction I had to it.

December 17, 2020 – Fast forward to today. I was again in the infusion center. It was packed. Packed is relative term since everyone has to be physically distanced now. I had since the year prior been bald for several months and then my hair grew back on my second kind of chemo…but came in dark and curly. Between the steroids, having to eat a little bit often to keep the nausea down, decreased activity, and being forced quickly and chemically into menopause, I have regretfully also gained nearly 30 lbs. This I hate. I am used to being so active and right now I am doing as much as I can by walking 4-5 miles a day with Tallinn. I get tired. My feet hurt due to hand/foot syndrome. But I am way better than I was at the end of last year. After my first chemo treatment photo with the ASL sign for “I love you”, it became a tradition. Rich has not been to my chemo treatments since April. The nurses are happy to take my photo for me. I have a teleconference in less than an hour with my sarcoma specialist at the Mayo Clinic. A plan for the beginning of 2021 will be made. So I will post later. Here’s to being around and being healthy on December 17, 2021!

I put this on Facebook and everyone seemed to love it, so I thought I would share it here as well. Rich, Lily, Tallinn and I try to go for a walk in the woods, around a lake, or somewhere fun and different than the neighborhood every Sunday. It was cold yesterday and Lily (being the stalwart teen girl she is) always grumps about being forced to go. This happens EVERY Sunday. This photo just captured it. Tallinn is in the back and has his head poked over the seat to see his family and where we are headed. Lily is often close to his head (he loves her) and she is complaining that Tallinn is breathing on her. We have one child (and she’ll be 16 in a few weeks!) at home and we still have the sibling complaints in the car.

I have been really been able to practice my patience since my cancer diagnosis. It is so ironic that the people who are trying their best to extend the length of my life, also make me wait indeterminable amounts of time. I go to the oncologist and I wait for him. Then I wait for the lab results to come back. Then I wait for the pharmacy to mix my meds. I wait…and wait…and wait. I find myself thinking that it is so crazy that my life is shorted by decades and here I am spending all this time waiting. Waiting for the pandemic to loosen its grip on Nebraska so I can feel more comfortable with going out places. Well, that is also what advent is about. Waiting. But not waiting twiddling our thumbs as Christmas marches towards us, or frantically shopping online….click…click…click…but waiting in prayerful awe as a miracle is about to happen. The miracle we celebrate every year at this time, Christ’s birth. I wasn’t raised Catholic. I became Catholic as an adult. I was raised Lutheran…Missouri Synod German Lutheran. (yeah, the strict ones!) I was raised in a home with an Advent wreath and never knew the rest of the world didn’t do this as well! I continued the tradition when I started my own family. The wreath is made of greenery (fake, in my case, to be able to use every year). Mine has winterberries and pinecones on it. There are four candles: three purple and one pink (or rose). They each stand for something different. Advent starts 4 Sundays prior to Christmas, so in 2020, it started on Nov 29th. It also marks the beginning of the new liturgical church year in both the Catholic and Lutheran Churches. It is not uncommon for the pastor to greet the congregation with “Happy New Year” that day in church. Each Sunday we light a candle. At our house, we light the candle every evening as we eat our evening meal. The candles represent hope, love, joy and peace. There is a fifth candle we light starting Christmas Eve…a big fat white one placed in the middle called the Christ candle. This past week was the third week of advent, where we light the pink candle representing Joy. We rejoice during this somber, prayerful time of waiting because the waiting is almost over….the end is in sight. A friend of mine, Kelly Nelson, places a pregnant Mary in the center of her Advent wreath, and then replaces it on Christmas eve with the Holy Family. I LOVED that idea so did so as well with mine. I have some carved wood figures from Bethlehem I am using. Happy waiting!

I am not even sure where to start with these folks. I belonged to the Impact Kickboxing gym for about 2 years before I had to stop kickboxing there and start kicking cancer’s butt from home. I had a brief time over the summer where I was able to kickbox in my garage. I would still like to get back to that if I can get another heavy bag. Kickboxing on blood thinners is not necessarily what the doctor would like for me to do…but man, I sure do miss working out my frustrations on a bag. It is as much for my mental health as my physical. Anyhow, I digress. Impact’s fit fam (as they call themselves) were such a support to me when I was first diagnosed with stage IV cancer. They rallied around me and I was so incredibly touched by the outpouring of love. I had only ever gone to the 5:30 a.m. class…so I had some regulars that I was pretty close with in that class. Kickboxing is not the kind of workout you get to talk through. If you can talk through it, you aren’t working hard enough. I got to know these folks for 10 minute talks before and after class…and the classic eyeroll passing between us throughout class. ( I am particularly guilty of this). Through social media (we have our own private Facebook group), I got to know other people at the gym that go to other classes. They rallied around me to bring meals…even on Thanksgiving Day (Michelle Krueger, her sisters, and Heather Doyle are the bomb). They were just over-the-top supportive. This is a very diverse group of people….from all walks of life and experiences. I am blessed to call them friends. Even when a lot of my church friends quickly faded away into the woodwork of the pandemic quiet…these folks were still sending me texts and messages online…dropping by with flowers (Ruth) and plates of goodies (Michelle Krueger again!) and sending me warm thoughts. Are these folks Catholics? Some… Are they Christian? Some…. Are they covered in tattoos and swear every 4th word? Many…. But they have such good souls and have moved me to tears with their compassion and support even though many I haven’t seen in over a year now. Thank you! If you ever need a gym to go to…these folks are the best in Omaha! You will get a good workout and a supportive family if you just let them in! Here’s one of my latest messages from this past weekend. This crazy guy dresses up in outfits and works out in them. It is a total morale booster for everyone. He was a reindeer the other day. His transformation has been amazing! Thanks Jonathan Hart…you are the best!

Okay, so I do not have a big green thumb. That happens when you only get to live someplace for 3 years at a time. However, we have a ton of plants in our house. When I first had my two cancer surgeries 6.5 years ago, I got a plant from Ed & Wanda Oslica….a pink Cyclamen (or as I call them, inside-out flowers). I managed to keep that plant alive and happy for 6 years. It grew so big that Rich replanted it. It didn’t survive the repotting, unfortunately. It totally broke my heart. When I had my surgery last November, the Oslicas again gave me a plant of Cyclamen….this time white. It was so pretty! However, it all of a sudden didn’t do well and then as Rich tried to revive it and it got overwatered. It is in a sad state right now and I am still hopeful it may revive itself. I was totally gutted though…I had these plants that brought me such joy as they would bloom all the time…especially during the winter months. When Lily and I were at Mulhall’s they had tons of these potted plants in all sorts of colors I had never seen. I was so very tempted to buy one for myself but I told Lily it wouldn’t be the same…as those flowers meant something special to me being from a good friend who was wishing me well. They are my “you can do this and get better” flowers. So I passed on buying some for myself.

The next day, I had a message from a friend of mine from my kickboxing gym. I hadn’t seen Ruth in forever and she had something she was going to drop by. Unfortunately, I didn’t get to see her (which is probably a good thing as I would have been a soppy mess on the doorstep), but she dropped by a gorgeous red Cyclamen plant for me. I accused Rich of telling her about this. He totally denied it. Even Lily came out of her room and saw it and said…”What are the chances?????” I totally feel like the Holy Spirit was working through Ruth that day. I got a little nudge from God saying that He was still there and still in control. Thank you Ruth Ehler! You totally made the rest of my month!

There is a garden store in Omaha called Mulhall’s. It isn’t far from our house but I had never been there before. I heard a radio advertisement saying they had European glass ornaments and then saw a post on Facebook they had live reindeer until Dec 19th….well, I figured I should go. Lily and I went on a Monday during the middle of the day, in the hopes that it wouldn’t be crowded. It wasn’t and we had a blast! I was proud of the fact that I left empty-handed (and Rich was relieved, I am sure) but Lily and I really had a great time. Dancer and Prancer were there and I got to talk to a mom and her 4 year old son about reindeer. We lived in Norway for 3 years and had the wonderful opportunity to attend Sami Days in the Artic Circle one February. We did all things reindeer that weekend and I learned so much. It was one of my favorite trips ever…and I have been on a lot of them. It was so nice to just talk to someone I didn’t know…goodness, it is nice to talk in person to anyone. Anyhow, Mulhall’s is huge! We just wandered around to all the areas looking at the ornaments…smelling the wonderful German cinnamon nuts they were making, and picking out the plants we would love to have at our home. They even had pineapple trees with tiny pineapples on them! It was so fun! Lily loves plants. It allowed her to set aside her moody teenage self and just allow the two of us to connect over the wonder of the whole place. Lily is hard to shop for so now I have some ideas for her 16th birthday, which is Jan 4th. Here are some pictures from our time that afternoon.

I had CT scans done on my pelvis, abdomen, and chest last Wednesday. These were my regular 3 month checks. I finally wised up and went to the chemo infusion center first to have my port accessed before heading to the radiology department. This makes it so much easier for everyone. When I have my scans, they do two sets…one with contrast and one without. The contrast has to be injected into my veins. Normally they would start an IV for that. I have a port to be able to avoid stuff like that. Crazy enough, it is way better to have a needle jabbed into your chest than someone fishing around in your hand or arm for a vein. A nurse has to access my port, so the radiology tech has to call one of their nurses…and most are not very proficient with ports (very scary) and they don’t have the right equipment to do so. (also scary) So my super oncology nurse, Nora, accessed my port so I could just waltz into the CT room and bypass all the craziness prior. This allowed me to be in and out in under 15 minutes. Yay! While I was in the waiting room, I noticed this blinking light that I hadn’t before. I have put pictures down below. This is why, even though I don’t like my oncologist very much, I stay at this hospital.

I received the readings of my CT scan from Bergan Mercy and everything appears to be stable. Although shrinkage is the best outcome, this is a close second. My scans will be sent to the Mayo Clinic to be re-read there by the Sarcoma team, who know what to look for when it comes to Leiomyosarcoma. I have chemo this Thursday, Dec 17th in the morning (this will be my 10th round of Doxil) and then will meet via teleconference with my sarcoma specialist at Mayo at 2:30. Rich will be able to be with me this time, I hope, and we’ll make a plan for 2021…at least for the beginning of it.

Happy Thanksgiving everyone! No matter how much your year didn’t go as planned…and I can honestly say that this probably applies to ALL OF US, we still have a lot to be thankful for. I honestly didn’t know if I would be here to be celebrating another Thanksgiving…and I don’t know about next year. That, in itself, is a small blessing. I mean, it is horrible and jarring and causes me to cry a lot, but honestly, it has really led me to have a bit more self-reflection on what is important to say…to do…to leave behind for others. I try to be more careful with what I say to others rather than just saying what pops into my mind. I make it a goal to check in on a friend every single day….whether by text, phone call or plain old mail. I make it a point of telling people I love them and I am thankful for them and proud of them. I don’t keep it to myself anymore, thinking they will know how much I appreciate them. I am honest…sometimes brutally so. Why did I ever bury what I felt? To be polite? To spare people’s delicate natures? We, as a nation, have gone over the top with sparing everyone’s feelings and I think we are not coping well as a community because of it. Do I want peace on earth? Of course I do, but I am no longer willing to just sit quietly and have my beliefs be trampled over for the sake of others. I have a higher calling to answer to, and that is my ultimate blessing….clarity in seeing that.

This Thanksgiving it is just Lily, Rich, Tallinn and me. The sun is shining and the temps should reach 50 if we are lucky. Really nice weather. I made monkey bread for brunch and the whole chicken is in the crockpot. I gave it a talking to this morning as I was seasoning it….telling the chicken it had to pretend to be a turkey since I couldn’t find one small enough for just the three of us. We’ll think of Joe as we have his favorite mashed potatoes…and of Tim when we have green bean casserole. Joe and Michelle are at her folks’ new home in eastern Missouri, and Tim is in Fort Collins, Colorado, ready to run his gym tomorrow for those who eat too much today. With a low-key Thanksgiving day in mind, we’ll head out to a park to hike for awhile soon. We have been trying to go to park each weekend to mix it up a bit. The pictures below are from this past Sunday at Hitchcock Park near Crescent, Iowa. I would highly recommend it! Nice trails and it is a $3 day pass or $20/annual. This is my icky week…so hoping get out and get some fresh air and exercise to help me feel better. I actually walked in snow on Monday….HUGE flakes that weren’t really expected, I don’t think. It was nice because I love the snow, but I was soaked through by the time I got home and it took Tallinn several hours to dry out too.

Thank you so much to everyone who continues to reach out to me to let me know I am not alone…that I am loved…and that you are thinking of me. It has been quite a lonely year for me, and I have been pretty sad about that. When you are living on a shortened timeline and you have your family and friends taken from you due to a pandemic, it just, well, sucks. People you are used to seeing and talking to often have dropped out of my life….and that was also painful to deal with. If I ever needed a support system in place and people to talk to about anything BUT cancer, it is now. Yet with the way the world shook out this year, many of those people dropped away. However, many whom I would have never thought would step up and be by my side did. People I would consider acquaintances stepped up and became friends…even if just through letters, texts, or phone calls. My heroes and heroines who kept me sane this year when my rollercoaster ride threatened to go off the rails. My boys…wow, have been wonderful. They call me several times a week and just keep me up-to-date on their lives and that is such a wonderful blessing. Special thanks this week to Ruth Ehler for the wonderful letter. Wow, I miss you. Marcia Chiarbos….miss your hugs and your quick wit. Thanks for the letter and prayer card! To my Aunt Judy and Uncle Dick…those Michigan socks are going on a hike with me today! I love them! I am so thankful for all of you! I am really truly blessed to have met so many wonderful people in my lifetime. I am blessed to be healthy even though I have terminal cancer…sounds crazy, but for right now, I am able to function pretty well and that is a blessing to live my time out this way rather than other ways. So off for a walk! Happy Thanksgiving to all of you!