My day has been blessed. It wasn’t a special day by any means…just a regular day where Rich heads off to work on a shorted work day, and I start out my day with devotionals and then continue on to my own work day doing the paper work for our business. But there were blessings sprinkled throughout my day. I was feeling queasy again. However, it held itself at bay for the most part. If it got too bad, I just had a small nibble of food and my stomach would calm down. This was a blessing. A bigger blessing was getting a solid 9 hours of sleep last night. Between the cancer treatments, the worrying, and the menopause, I haven’t been getting great sleep. The last three nights have been great….last night especially. I enjoyed my two Lenten devotional books I have been working through and read through the daily readings with the Blessed Is She website and the University of Notre Dame. Thanks to some quality time dedicated to paperwork Friday and Saturday, I was able to really whiz through my online work today. I had quick text check-ins from two of my regular gal pals, Erika Campbell and Fiona Macklon. These two ladies check up on me every 24-48 hours and I love them for it! Two big blessings!

I received an unexpected call from the Bible Study Fellowship group I had started in during the fall of 2019 and had to drop out of due to my health. This woman was recruiting me to sign up for the coming fall to study the book of Genesis. I could not commit and told her why. She immediately stopped the conversation and asked to pray with me – a complete stranger. It was beautiful and another blessing in my day. I had communication in other ways from special people as well that were blessings. I was able to talk to my parents, Walt and Karen Neitzke, who live in Cypress, TX (a suburb of Houston). I am happy to report they are staying put for the most part and have my brother calling them every couple of days to make sure all is well with them. It sets my heart at ease to know they are doing well when all this craziness is going on and I live so far away. I received cards in the mail from friends from my parish, St. Gerald. A nice card from Deb & Todd Banchor, who have become like siblings to me, and a thoughtful card from Mary Bystrom, whom I don’t know as well as I wish, because she seems like a really cool person. I was shuffling through the rest of the mail and there was a beautiful postcard of Tallinn! (my dog, not the city) My dear friend, Mei-Ling Marshall from California, loved the picture and made it into a postcard. I love it! The stamp was a picture of a sign in Columbia Falls, MT, where we just bought 10 acres of land this past summer that simply said “PRAY BIG”. It was another blessing.

Lily is on spring break this week. HUGE blessing! It was nice to not have to be plodding through emails and assignments for the last three days. It was nice to be the fun mom and not the teacher mom who is trying to keep her on track for success. She decided on a wild hair to clean her room today. After almost fainting, I left her to it and she has made quite a bit of progress throughout the day. Big Blessing. We even took Tallinn for a walk today and had a nice natter.

I have joined a random Facebook group called “What do you see from your window? #StayAtHome”. It is phenomenal! I have been connecting with people from all over the world who are sharing their view of their world during this quarantine process. I have looked out the windows of people from Israel, South Africa, Canada, Australia, Germany, Ireland, UK, Norway, Singapore, Crete, Egypt….just all over the place. We each give each other good wishes and prayers for well-being. It is a small blessing that pops up on my Facebook feed when it starts getting overwhelmed with COVID-19 scariness and cancer talk.

And last, but certainly not least, I received a wonderful call from one of our parish priests. He and a parishioner, Becky Tometich, gave me a call out of the blue to check on me. It gave me the opportunity to thank the parish for having live-streaming broadcasts of the Mass each day. It has been so wonderful for me. I was able to watch today. Another blessing! Fr. Michael Voithofer then prayed with me over the phone and gave me a blessing, which really meant so very much to end my day with such a gift. I hope you all are able to find your blessings throughout your day as well….even if you are stuck at home doing what you might think is mundane…the blessings are there. Just look for them!

I can’t believe Holy Week is upon us already! What a blessing to have the technology to be able to livestream our church services each day of the week so we can still be fed on the word of the Lord! Rich, Lily, and I jumped in the car to run down to the church after Mass this morning to pick up some palm branches being handed out in a car pool lane. It was so nice to get out, even though we were in the car the whole time, I was masked for the first time, and it lasted all of 10 minutes. The things we take for granted! As I type this, our two priests are driving around the city reciting the rosary and other prayers while holding the small monstrance holding the body of Christ, blessing the city. There is a person in the backseat who is live streaming this beautiful scene of love of our sheperds tending to their flock in this inventive way during these crazy times. I am happy to be lifting my prayers up with them as they drive around. They are calling it the Jericho Drive.

Tim came up from Lincoln to visit. He got here in time for dinner last night and then stayed the night and left early this afternoon. A relatively long visit for him! It was nice to have him home. Tallinn loves him to pieces (although I am not sure the feeling is mutual most of the time). Tim helped deliver a treadmill and put up our huge family cross in the front of the house that we put up for Advent/Christmas Seasons and HolyWeek/Easter Season. He took the dog for a run….his first…and it didn’t go swimmingly. Tallinn has the bad habit of swerving back and forth in front of the people he is walking (or in this case running) with and then slowing down. It is frustrating. You feel like you have a mantra in your head of saying, “Tallinn, just keep going!” He has a lot of zip to him and is super fast…just likes to be the herder of his flock when out and about, I think. Pair that with a red-headed, testosterone-filled young man who doesn’t really appreciate running in the first place and it wasn’t a match made in heaven.

This weekend is the start of spring break for Lily and her school district. Good timing. They announced that they will be weighing the third quarter grades more than the fourth, which is understandable. However, Lily had a tough 3rd quarter so she is making up grades for that as well as doing the course load for quarter 4. Sigh. Her engineering teacher is still missing in action. She really only has 3 teachers who are giving her daily works. They rest are resorting to projects. Lily is not keen on projects because it is again a time management crunch issue. Sigh. So far so good though.

Our store still remains open, getting sporting goods equipment out to the masses so they can be active at home. We are doing a lot of deliveries and curbside pickups. It is a blessing to be able to still be open to help others right now. I know it is getting crazy with parents and kids being trapped at home for long periods of time needing an outlet for their energy. Rich and Ed, a good friend of ours, are out shooting arrows at an outdoor archery range. The weather is beautiful, so I hope they are having a good time. Our oldest sons are best friends….and they spent all weekend together trying to not be too bored with the quarantine in Kansas City. It is hard on everyone…especially young people who are used to being out and about and active.

It has been 4 days since I had my chemo on Thursday. I have finished taking the steroids as of today. Tomorrow I will be all natural. I have had some nausea today. Not bad enough to take my medication yet, but did break open the queasy drops to suck on today. I am trying to keep busy, hydrated, get some exercise, and keep a little something in my tummy to keep it at bay for now. If it worsens tomorrow, I will see if I need to ramp it up and actually take some medication. For every medication, there is a side effect. Sigh. Sometimes those are worse than the actual medication. So far it hasn’t been too bad. As I said before, I hope that the medications I have been given so far have gotten me over the worst of it. I can only wait and see. I have had weird hair stuff going on. Yes, too much information maybe. But for the last 10 days or so I have lost my eyelashes and almost all my eyebrows. This was WITHOUT being on chemo. Now I am left with black fuzzy hair on my head (and my natural hair color is blonde) and some blonde hair on my forearms. That is it. Weird.

Shout outs! Thanks for the visit, Tim. It means so much to get to spend time with you. It was fun reminiscing about your middle and senior high school years last night and playing family board games. (even if you won Settlers of Catan). I got a chance to text with a friend in Norway who is from the UK…and another friend from Scotland, who I met in Norway, but who lives in Houston. It is so wonderful to be able to connect with people! Then I had a wonderful quick visit from my glove partner from Impact Kickboxing, Susan Ferguson. She brought me an Easter care package that I absolutely loved! You are the very best. I just love you so much, Susan! I broke all the rules and jumped out of the door and gave her a hearty hug. We both needed it. I hadn’t seen her in months. I have been able to catch up via text messaging with strong women whom I admire over the last few days and that has been a blessing – Michelle Nagel and Aimee Schultz….thanks for helping me to keep my mind off of cancer and letting me hear about what is going on in YOUR lives. It keeps me going and makes me smile! Well, as I close, I wish you again a Blessed Holy Week…one like we have never had like in the past. Don’t waste it.

I have gotten a few phone calls and texts from good people wondering how I am feeling. The short answer is pretty darn good. The IV anti-emetics and steroids are designed to last 24-48 hours. I am also taking steroids by pill form today, tomorrow, and Sunday. So I am guessing that is designed to get me over the proverbial hump. Next week will be the real test. I hadn’t slept well the night before chemo and I slept hard last night, which was much needed. I was awake early, which was good, because I am getting a lot done today! Lots of end-of-month reports and also many more reports to create to be able to apply for small business forgiveness loans which will help us for when we have to close down the store. My guess it is not a matter of “if” but “when”.

Shout outs! I got a letter in the mail from someone I don’t really even know. I know of her…but not her…definitely wouldn’t recognize her on the streets. Marilyn A. is the best friend of my Aunt Judy, both of whom live in rural Michigan. They have been best friends for decades. When my aunt talked to her about my cancer journey, it hit home because her sister-in-law also has LMS. Small world. She knows first hand the struggle and the fight that this type of cancer carries. She wrote me this lovely note filled with compassion, kind words, and a prayerful demeanor. Marilyn hoped she wasn’t being invasive….not at all! It really, really touched me. Thank you! I was contacted by Reuben and Nancy Rosales from my church. They are siblings to Deacon Steve and Angie Luna who brought the yummy dinner last night. Actually I found out later that Reuben and Nancy supplied the dessert! They read on my blog that I was waiting on a good friend, Roxanne Aguilera in Colorado, to make and mail a mask for me (and she sent it off today because she is a Rockstar!). Nancy didn’t want me to have to wait for the mask, so she made some for me and Reuben dropped them off today. Now I can feel confident about answering the door….and running to the hospital….and heading out to pick up palms from the church this weekend. What a blessing all of you are to me!

I just got back from the cancer center at Bergan Mercy. It was a half a day today. They drew labs, had be talk to a resident (always my favorite – insert sarcasm here – so he can ask me to relay my entire story to him….which he then regurgitates to my chemo doctor in front of me as he gives a report to him…then he gets questioned by my doctor), see the doctor and then head up to the infusion room for chemo treatment. I know that this is a teaching hospital, but to have to go through my entire story every single time gets old…and kind of irritating. All staff were wearing masks today. I contacted a good friend from our Okinawa days who is now in Colorado. I saw online that she was making masks. You can’t find them anywhere and I don’t have any. She said she would send me one. Thank you so much Roxanne!

They took their time giving me Doxil today. I first get two medications through my port. One is just in a large syringe pushed by the nurse. It is an anti-emetic (takes away the nausea). The other one is a bag of meds infused over 15 minutes or so and is a steroid to help you feel a bit better for today and tomorrow. Evidently I will be taking oral steroids for the next three days – while I was in the infusion chair, I got a text saying my meds at Walgreens were ready. I didn’t even know that they had put in an order for meds. One for the steroids for the first three days after chemo, and two others to help with nausea and vomiting to be used as needed. Guess we know what the main side effect may be….Although I got those prescribed for the other chemo combo and didn’t have an issue. Time will tell. My oncologist here said I would lose my hair. So we’ll see if this dark peach fuzz with actually end up growing out or not. Usually week 3 is when is starts to come out, I have heard. We shall see. I noticed my eyelashes and eyebrows are really thinning this last week, which is weird because I have been off chemo for 6-8 weeks now. Goes to show you how long this poison lasts in your system. Or maybe it is the stress of helping a 15 year old high school girl do extended learning from home. (actually she is doing really really well! – although I did just have to relay the message that she won’t be going back to school until the fall.) So back to the chemo. Doxil is also called the Red Devil. It is actually red in color. It looked like red Kool aide. I am not fond of kool aide, just for the record. So far I am feeling okay. It is the whole first week that I will be recording side effects and they should be worse during this time. I keep a daily journal of what is going on with me…if I have fevers….any exercise I do….how much water I drink…if I am feeling nauseous….whatever. It helps me know what is my new norm with chemo and also helps me see trends which I may need to share with the doctor.

I was kinda sad going today. Not because I was started yet another chemo agent (but I am sure that was some of it)…and not because I knew I was going to not feel good for an undetermined amount of time again (this was a big chunk of it, if I am being honest with you all), but because for the first time, Rich couldn’t come with me. Only patients are allowed in the hospital and clinics now at Bergan Mercy, unless you are giving birth. So I was feeling a little down. That pesky nurse brain whispered in my ear that this was a new toxin being pumped into my body. I am not allergic to anything but if I happened to be allergic to this and it is being pumped into the large vein just adjacent to my heart, the results could be catastrophic. So I showed Rich where I had put my notes for my desires for my funeral service. There’s a real kick in the gut at 0800 in the morning. Just in case, I told him….so he knows where it is. I should probably at some point type it up and put it on my computer but that made it too real. I had it handwritten in the back of a spiral notebook squirreled away in a drawer. I was having a bit of a pity party in my head this morning. I wanted Rich to able to be at my side. That quickly left when two new chemo patients came into the infusion center alone today and sat near me. Near is relative…they were probably 12-15 feet away. I made sure to talk to both of them for a little while. Being there for your first chemo treatment is really overwhelming and scary. To have to be alone compounds the issue. I hope I will see them both again. They were both really nice. Pity party squashed.

So I have decided that I have so many thoughtful people in my life that need to be recognized for their wonderfulness. Mr. and Mrs. Doyle send me a card about every week. I knew them from 8th-10th grade when I lived in Alexandria, VA. They lived a couple doors down and their house was where the backyard football games were held. They have two son whom I adore. They followed in their dad’s footsteps and are very successful officers in the Army. Mr. and Mrs. Doyle were always so nice to me, a tomboy, who played QB in their yard with the guys. (I can throw a football, if you don’t mind me bragging for a sec). The fact that they still remember me and care enough to send me a card every week humbles me. Thank you. And then there is Mei-Ling Marshall. We met ONE TIME. Only once. She and I were bridesmaids in a wedding at the Naval Academy at Annapolis….in 1992. Yes, 28 years ago. Funny thing…when you get married at the Naval Academy, you have to have the bridesmaids go from tallest to shortest. I am all of 5’3″, so you know where I fell. Mei-Ling stood next to me. She was a midshipman and I was getting ready to get commissioned into the Air Force. We bonded over knowing the couple and being two women headed into military service at the same time. We hit it off right away. For 28 years we have stayed in touch. We each have three beautiful kids, yet with her career in the Navy and our life in the Air Force, our paths never again crossed. I have only met her that one time. When she found out that I was sick, she demanded the names and contact information of the “boots on the ground” in my area caring for me. She has sent care packages, gift cards for restaurants, and countless emails and texts of support. She is the BOMB DIGGITY (I am allowed to use this vernacular because I am almost 50 and have cancer…don’t judge!) 😉 This morning I sat down to have chemo and I had so many messages of support on Facebook and through texts from friends, near and far. I was thrilled to finally connect with a couple of people on the phone. To hear a voice when in isolation…..it is amazing. Dan Buck – I love you, Brother! So great to catch up! And Aashu Montiego…..it was amazing to talk with you! (We met in Norway. She is Tim’s Confirmation sponsor, and I am her son, Keegan’s, Confirmation sponsor. Keegan and Tim were good friends. They are originally from India and now live in Canada. – yes, I have a lot of global friends like that.) Deacon Steve and Angie Luna are bringing my family dinner tonight….as so many others have done over the last few months – for which I am so grateful! I am surrounded by love and I am so very thankful for it all. Thank you everyone. I am truly blessed to have you all in my life. So many people do good things and never get recognized for it….and I want you to know how much I appreciate you and let others know the good in you. It helps you be a disciple to others…and you aren’t boasting about it….I am bragging on about you! So please accept my humble thanks!

Life on the chemo cocktail of Gem/Tax wasn’t so great. I lost my hair…I lost my sense of taste…my bones ached and I was tired. It eventually attacked my lungs and Gem/Tax and I had to part ways mid-February. Granted, I was super sick at that point. A month of massive doses of steroids cured me and gave me the energy to get a lot done. I made 11 photobooks from recent travels that I had fallen waaaaay behind on doing. Thanks to Shutterfly, the trips and family photos are now immortalized. I made three old fashioned scrapbooks with printed photos as well. I currently have 4 more projects sitting in my home office awaiting my attention. I have gotten Lily set up on a schedule and calendar for her 9 classes she is doing online. Three weeks in, she is doing much better at organizing her time and prioritizing her work. That is a hard lesson to learn, but a valuable one. We had painters in our house for a week painting the upstairs kitchen, hall and living room. They also repainted the hall, stairway and living room in the basement. What once looked like a dungeon, is now a beautiful place to relax. Rich and I just finished putting up new family travel photos up on the walls down there and moved the furniture to their final spots. I have a few things to do in the apartment so it is ready for company if needed; that can be done today and tomorrow. It’s not like people are traveling much. I kinda feel like I am a pregnant mother nesting before the birth of her child….I am trying to get everything cleaned up and nice for when I am incapacitated with the effects of chemotherapy. I have talked to other cancer patients and it is kind of a common thing…trying to rush around and get things done before treatment begins.

I got the call about an hour ago. I will be starting chemotherapy (Doxil) Thursday morning. Everyone is so excited that I get to get back in the fight. However, I honestly have mixed emotions. Chemo is awful. No kind of poison that you willing pump into your body makes you feel good. I don’t know what to expect…and I know this is the kinder of the medications in this family of chemos, they have dubbed “the Red Devil”. Evidently the chemo is dark red. I will let you know on Thursday. The doctor forget to mention the other medication for my bones (Zomeda) to the nurse, so that was not sent in for approval to my insurance company. This was providential because I really wanted to space these two meds out anyways. So Thursday morning I start again. For all you military folks out there…it is back to war. My R&R is up.

Before I go, I want to thank in a very public fashion, my friend Julia Palma Law for the amazing care package I received yesterday. I met Julia when we both were stationed in Norway. She is now in Japan and sent me a huge box full of Japanese snack foods. It was AMAZING! My adult sons are both so jealous! I will say that Rich, Lily, and I all agreed that the Sakura (cherry blossom) sake kit kats had the most unusual taste ever. Thank you so much for the package, Julia! It brought back so many memories of our time living in Japan!

I am guessing that many of you are starting to feel this way….life in the desert….searching for the relief of an oasis. Amid the scare and I admit for some of you, panic, of the COVID-19 pandemic, we have been forced into isolation. Many of this most recent generation were well on their way to this prior to any social distancing. Faces buried in the screens of their phones…talking to the person via text or game dialogue when if they just looked up, could see the person across the room from them. Do you think they are coping better than the older generations who are not tech savvy? Perhaps. But we all feel the loss of choices being taken away from us. Choices to go shopping for a new Easter dress in a store….to visit a friend….to travel to see new places…to go out to eat with your family…to go to Church and worship with your brothers and sisters in Christ. These choices have been taken away from us and it can make you feel isolated and down; like wandering in the desert.

Many people have commented to me that they admire my faith and upbeat attitude despite the circumstances I have been dealt. I have to be completely honest with you. There have been some really dark times for me. For the first two months or so I can look back and tell you that I was indeed in a deep depression. Everyday I woke up and hoped it had all been a bad dream. But I could feel my bald head and the lump on my chest where my port is and know that it was not. I am a praying person and a woman of faith. Even now, I participate as fully as I can to the live streaming daily and Sunday Masses from my home parish, St. Gerald, in Ralston, Nebraska. It is Lent and I have a couple of extra devotions I do each day on top of the ones I do daily all year round. I talk to God (usually in my head) throughout the day…thanking Him for gentle mercies and asking for blessings for others. I was blessed to be raised by strong Christian parents and have been blessed along my life to meet people who have been instrumental in my faith journey. No matter how strong your faith is, you sometimes find yourself in a desert.

I have been pretty lucky that throughout my cancer journey, I have rarely missed Mass on Sundays. In fact, I only missed one Sunday, the one I was in the hospital after surgery. I feel at peace in my church…and feel I can talk to God better. It’s like the telephone reception to God is clearer there. (I know that sounds ridiculous, but bear with me….these are my feelings.) However, it was also a painful place to be. Every hymn we sang I would question in my mind if that was a good one for my funeral. Would this hymn have the words that would comfort my family and friends? Would this be the hymn that sounded like I was speaking to them myself? I love to sing…and would sing through the tears and choked up feeling I would have at Mass. But then I started having those pesky lung complications from chemo and I didn’t have the breath capacity to sing….just barely whispering the words of the hymns…having to sit down when everyone else was standing because I was just too tired. Getting way too overheated and wanting to take off my felt hat that I wore to church but didn’t want to scare the small children around me with my bald head. Going to Mass was generally my only outing for the week other than dr appts and occasionally driving Lily and her friends to and from school. So I have been in this desert that you all are finding yourselves in for months. Now Mass in person has been taken away. My dear friends at St. Gerald are kept at a long distance and I miss them. They would always come up to me and tell me that they were praying for me and give me a hug. A hug….something that is so simple yet I miss so very much. I think about these poor people who are in isolation with COVID-19 who are not getting visitors or human touch during their dying days….seniors in senior centers….my heart aches for them. They are in the desert with us and we can’t forget them.

Today’s Gospel lesson was a hard one to listen to. The story of Jesus and Lazarus. Lazarus was a good friend to Jesus, as were his two sisters, Mary and Martha. Word was sent that Lazarus was sick. Jesus waited two days then travelled to their home. Lazarus had died. Jesus wept. He wept for his friend and he wept for his grieving family members and friends. He wept even though he knew he would miraculously raise Lazarus from the dead. I worry about my family and friends when I won’t be here on earth anymore. I try hard not to go down that path because it ends in heart-wrenching tears. Will my husband be okay? Will he re-marry and be happy? Will my kids go on to live happy and productive lives? The selfish part of me wonders if they will share their memories of me with their kids so they might know who their grandma was? Will my kids ever think of me once I am gone? Who will take care of my parents? Will they know how much it hurts me to have them bury a child – even an adult one? It is stuff like that that sends me from simply being in the desert to being in the desert in a haboob. (yes, it is a real word….it is one of those massive sand storms) Luckily for me, through the swirling sand, there is a hand that will grab ahold of my arm and let me know I am not lost. Sometimes it is a phone call from a friend…a letter in the mail…a text from my family…but all have the hand of God in them, letting me know that I am not alone. So many people have touched me in a way that have saved me from that haboob (sorry that is such a weird word…but it is the one that I have to use). I try and tell them right away that they have had the Holy Spirit work through them to save me from the darkness. Like a text from a friend across the globe that came in at 4 a.m……when I was awake and lost in that haboob. They touched my soul, and let me know I wasn’t alone…and the sand storm ceased. I am so lucky that I am not in that dark place constantly anymore. I have dark moments….not dark days and weeks now. I am so very thankful to all of you that share your lives with me. Cancer has taken over my life. I appreciate you all who contact me and talk to me about your lives…about the good and bad. Thinking about anything else keeps me in the light. I have read that I have to stay out of the sunlight with this new chemo drug. I love the sunlight…I sometimes feel that everything is being taken away from me right now. I love the sunlight, I love Holy Communions, I love hugs, I love seeing and talking with friends, I loved being prayed over, I loved working out, I loved working,….you can see how it can snowball and become a pity party. So today I pray for those you are wallowing in isolation in that pity party. Reach out in a responsible way to your family, friends, and neighbors. Let them know they are loved and remembered during this crazy time. Hug who you can and let them feel the love you have for them. Everyday my day planner asks what my main goal is for the day. Mine is always the same: Be a blessing to others. Remember that the end of the Gospel lesson today was a story of hope: Lazarus was not forgotten by Jesus, but was raised from the dead.

I had two appointments today at Bergan Mercy. I met with my oncology hematologist. He whole-heartedly agreed with the Sarcoma Specialist at the Mayo Clinic. He put the order in for the drugs we discussed. His nurse will submit the request for coverage to our insurance company on Monday. Hopefully, we can get started at the end of next week. I also met with my pulmonologist. He was very happy with my new chest CT. He said it was a difference between night and day. He also told me how very close I was to have being admitted to the hospital in February when I first saw him. He was really debating about admitting me for IV steroids. I was really fortunate that the pill form worked well for me. He recommended that I avoid as much as I can the two chemo agents that I took for those three months. No problem! Lots of other options to chose from ! As much as I really love this doctor, I sure hope I don’t ever have to see him again.

I was really looking forward to watching the Mulan movie that was due to be released today. I actually am not a big movie person, so to say I was looking forward to seeing it says a lot. Sigh. I am ordered by my oncologist to be a hermit. So at home I stay….only trips to the hospital for me. We just had parts of the interior of our house painted, so there is some rearranging to do still. Otherwise, it is just working with Lily on her classwork and some scrapbooking. I have also been pinching my nose, holding my breath, and blowing out, trying to make my hair grow faster. Doesn’t seem to work as well as it did with the playdough hair barber kit that Lily had when she was little. Ah well. Patience. I know. If God is trying to teach me patience, He is really working hard on teaching me that lesson! Have a great weekend everyone!

Well, after a whirlwind trip of 10 hours of driving in the upper Midwest, we are safe back home in Omaha. We got home and decided to stretch our legs and go for a family walk before Tim headed back home to Lincoln. It was really great that he was able to come up here and stay with his sister and Tallinn while we were gone for about 30 hours. Listening to podcasts while we were driving there and back really helped make the trip pass more quickly. Also, a quick shout out to my best friend, Judi, who lives in Rochester. She picked us up this morning and drove us right to the front door of the building we needed to be at for my appointment. I only got to spend about 7 minutes with her, but I will always take what I can get! She is one of those friends who always makes me laugh, even through the tough times.

We entered the Mayo Clinic and immediately had to answer a barrage of questions. We then got our temperatures taken. We moved on to a second station and had to give my Mayo clinic patient number and let them know when and where our appointment was. We were given a big blue sticker with the word “Thursday” printed in big white capital letters. We had to wear the sticker in plain sight the whole time we were there.

The Sarcoma Cancer Care Team is housed on the 10th floor of the Gonda building. It is a newer building and was beautiful. There were a lot of Murano blown glass sculptures in the main areas and then beautiful quilts back in the patient appointment room areas. The waiting areas are massively large with several wings waiting in the same area. There were signs on some seats for people not to sit on to keep physical distance from one another. Most, if not all, of the patients were cancer patients, so there wasn’t a lot of need to say much. We are pretty good at practicing social distancing when we need to before the COVID 19 virus became an issue. I got called back pretty quickly and when I was measured at being 5 ft 3.25 inches. That’s the tallest I have ever been in stocking feet! Okay, truth be told, I was wearing a fuzzy hat. It was cold today up in Rochester! Anyhow, the person checking me in asked a few questions and then gave me a sheet with the names and pictures of all the team members on my Sarcoma Cancer Care Team and contact information. Wonderful idea! A fellow (which is a doctor studying to be a specialist in a medical field) came in and so did a RN. He asked me to start telling me the story of my cancer journey. He had already known most of what I was going to say….but wanted to hear it all in my own words. He verified some of what I said with questions of his own, and then allowed me to ask him the questions I had brought with me. Then he went over some of the scans with us and then some of the options that the team had talked about ahead of time for treatment.

When the Sarcoma Specialist came in (he’s the head guy there and super nice), Rich and I were very impressed. He told us that he had talked to the gyn surgeon at the Mayo Clinic and they had talked about my case ahead of time. Surgery is not an option right now, agreeing with my local surgeon in Omaha. So they cancelled my later appointment for today. That did allow us to leave earlier to get back home, which was nice. So this doctor has a different way of approaching my case than the doctors in Omaha. This Sarcoma Specialist sees a LOT of people with LMS like me. To the doctors in Omaha, I am an enigma. Leiomyosarcoma is 1% of all cancers. The fellow has seen more sarcoma patients than my doctors in Omaha. So they have a lot of experience. My doctors in Omaha want to be very aggressive and try to shrink the tumors in my pelvis so they can operate. The trouble is, it has to be shrunken down really small to get ALL of it out. LMS is an evil beast. It just keeps coming back. It isn’t a matter of if it will come back but when and where. My cancer has already spread to other areas of my body. I am stage IV. The toothpaste is out of the tube and it isn’t going to go back in. There will be no cure. There will be living with it as best I can. The doctor said that there is no reason to put me through the really horrible chemo treatments (which is what my chemo doctor in Omaha wanted to do even before my lungs were cleared) when we can use some that will give me better quality of life. So for all you medical folks out there, we are going for palliative care versus curative. Currently, I have no symptoms from any of my spots of LMS in my body, including the one in my pelvis the size of a cantaloupe. If I hadn’t really been in tuned to my body, I would likely still be living my life not knowing about it. My back does hurt if I have been walking a lot from the spot on my spine. However, if we can keep everything like it is or even shrink it, then I can lead a good life. The studies have shown that the really icky combo drugs did not prolong the life more than the single, less icky chemo drugs. So we are aiming for quality of life. Surgery is not longer the top goal. Letting me live my life is. No, we are not giving up. I know this will most likely kill me at some point. There is no cure. However, I am going to take the Fellow’s advice and do whatever makes me happy. The plan is to start on Doxil. It is a chemo drug with a lipid attached to it. It is evidently bright red and has very few side effects. The biggest one being that it may turn my hands and feet red. At least I live in Nebraska where the greeting to all natives is “Go Big Red!” I should fit right in! It does not cause hair loss. In fact, my hair has started growing back in a bit over the last 6 weeks. It is maybe 1/2 cm long (yes, I look like a chia pet). My hair is dark though….so I don’t know if it will be blonde again or not. It is nice to know that I will maybe have my own hair for Joe and Michelle’s wedding! Six months of growth….I might be able to pull it off! The doxil is an IV drug and will be administered over a couple of hours once a month. The Mayo doctor also suggested another drug (not a chemo drug) that is given IV once every three months. It is a drug that will strengthen and seal off my bones so the lesion in my L2 vertebra doesn’t spread or weaken the bone and will protect my other bones from getting other cancers spots growing on them. So these two drugs are the suggested plan of treatment here in Omaha. I have two appointments tomorrow (Friday) at Bergan Mercy. I will see my chemo dr to review my plan and set a start date (most likely next week) and then the pulmonologist to get my lungs checked out. I had a chest CT on Tuesday, and the Mayo dr’s reviewed it and said I should be good to go. So more tomorrow on dates and such.

I want to thank you all for your words of encouragement and support. I am overwhelmed with the kindness being sent my way. I have so many wonderful people in my life. I am so very blessed! I am sorry if you sent me a message asking how today went and I didn’t get back to you. I really wanted to talk to my kids first and my parents. To avoid having to type out everything or talk about it over the phone multiple times (because I tend to get a little emotional talking about it) I would rather just type it here and let you all read it at your leisure. I hope you understand.

Well, we are just about ready to leave for Minnesota. No snow in the forecast or tornados…you never know with the upper Midwest. Tim is here to stay with Lily and Tallinn. My dear friend Emily is bring food for the kids tonight. Just when I was starting to get a little anxious, I went out to get my mail. I had five cards in there today….all with words of encouragement about this trip. It was just what I needed to push the tears back and let God take over. I probably won’t be posting on her until I get back (which I am hoping is tomorrow night. I hope to have a lot to say and a plan to implement!

Today I had to go into Bergan Mercy Hospital to have a repeat Chest CT done. I told you I had issues with a chemo pneumonitis….well, I have a follow-up appointment with my pulmonologist on Friday and he wants to see if the steroids cleared everything up. Normally your lungs should look relatively clear. Mine looked like a cloudy spring day with streaks of white cirrus clouds everywhere.

I was greeted at the door by masked medical workers and their questionnaires. They were very nice considering they were sitting right next to the door and were in scrubs. They had to be freezing. I was then offered hand sanitizer and asked if I knew where I was headed and then sent on my merry way. Almost all of the people that work at desks at the hospital were wearing masks. My radiology technician was not. There was a waiting room and we all spread out to avoid being too close to one another.

I am not a big fan of these scans. I have had enough of them already to last me a lifetime. So I have to admit after reading my Lenten devotions this morning, I prayed about this. I have a port in my chest to avoid having a bunch of needle sticks. However, the techs in the radiology department are not qualified to access these ports; they have to call one of the oncology nurses to come do it. So it is really easier for them to just start a peripheral IV (in your hand or arm). CHI has recently gone to new IV needles/catheters. They are so much more painful. I am usually pretty good with IV’s being started on me. I was a nurse in the Air Force, and am pretty at ease about those kinds of things. However, the last three scans I have had (in the last couple of weeks), I have really had some bad experiences. It feels like those catheters aren’t letting the needle do its job and then they feel rough as they are advanced. Anyhow, with that in mind, I was dreading today. All of my former CT scans were with contrast, so I had to have an IV. I prayed for grace this morning at my appointment. God listened! I didn’t need an IV! I was in and out in about 10 minutes and was thrilled about it. Because I leave for the Mayo Clinic tomorrow, the nurses there asked for me to get a disc of my CT scan today to hand carry up there. I asked about it and the techs had it for me in 5-10 minutes. My biggest complaint of today was that there was so much road construction around the hospital that I had to go a very round about way home. Goodness, if that is what bothered me today, I am indeed blessed. I do have to say that I was more nervous going and sitting in the hospital than I am going to the grocery store. Call me crazy, but that is how I feel.

Since I try not to let cancer rule my life, I am going to chat about something different. How about homeschooling a high school girl! Good gravy, that may just kill me before the cancer does! We are on week #2 of what Westside School District calls “Extended Learning”. Whew. Last week was ROUGH. Here’s my take on this. People in college classes have the choice of taking online classes. They normally only take one or two at a time. You really have to be pretty organized and diligent about doing your required work. When I was living in Japan, I worked on my Master’s degree and it was all online. You only took one class at a time because that way you kept everything straight. My newly 15 year old daughter (who was not given a choice) is now doing 9 online classes. She has a hefty schedule but two of her classes were more hands on: Art and Intro to Fashion (sewing). Whelp….kinda hard to do these classes hands on now. So they are having to kind of rewrite these classes…with videos to watch and worksheets and papers. Last week in a 24 hour period, I had 10-15 emails from her teachers. Some had assignments, some had project deadlines, some had expectations for study time and facetime with the teachers over Zoom. If you know me at all, you know I am a very organized person. Color-coding everything is my passion. I was totally overwhelmed. Lily was TOTALLY overwhelmed as she received the same emails I did plus duplicates from Google Classroom. Rich called me from work and asked me to take him off the school email list because he couldn’t wade through all the school messages to get to his work messages. The next day….the same thing. It was awful. Lily and I sat down and read through every email and wrote down assignments and due dates. Monday rolls around and we didn’t hear from any of the teachers until after 3 p.m. Today, we received emails from her teachers and it sounds like most of them will only be emailing once a week with the whole week’s assignments instead of everyday. Today the planner I ordered for her came in the mail. We sat down together and set it up. It is color-coded and has everything on there for each day that she can see easily. I am hoping this will help tremendously, especially since I will be gone for a day and a half and Tim will be the one cracking the homework whip. She hasn’t heard from her Engineering teacher at all yet…and she said he never emailed the class during the school year, so I hope that this is somehow going to workout as well. I have to admit there has been yelling….tears…on both sides. The one nice thing is that I let Lily sleep in until 0930 and she starts her work around 10. She is NOT a morning person. This is helping a bit. Anyhow, off to make sure she is actually reading her book for Global Intolerance and not painting her nails…..sigh. My love, empathy, and prayers go out to the rest of you homeschooling your kiddos!