After getting pretty much caught up at work and reacquainted with our dog (whom I missed terribly), Lily and I set out to spend the afternoon in Lincoln this last Thursday afternoon. Lily finished her classroom portion of driver’s ed while we were in our last few days before heading to Florida. She needed more practice driving though. When the boys were practicing driving, we lived in Bellevue, Nebraska…about 25 minutes south of Omaha and a bit more wide open and rural. Omaha, not so much. Joe, my oldest son, swore he would teach her how to drive…and he has taken her out a couple of times when he has visited. He lives 3 hours away though, and he is in a firefighter’s academy for 12 weeks…so he is off the hook. Who is the wiggling worm trying to squirm her way off the proverbial hook? Yeah, that would be me. Sigh. BIG SIGH. I have had her drive most of our errands. She works at our store and she drives there and back with me or Rich in the car. She drives back and forth to the grocery store with me. She got to practice driving in the pouring rain the other day which was great experience for her….and life altering for me. I figured at 1245 on a Thursday afternoon, the highway wouldn’t be too congested so I let her drive us down to Lincoln. My life really only passed before my eyes twice. For someone with terminal cancer, that’s pretty good, I would say. She actually did a really good job and she has a healthy fear of going so fast down the highway, which is good. For those of you who don’t know my daughter, Lily, she was born with only one hand. Her left arm stops about two inches below her elbow. She is 5 feet tall with shoes on, so she is also a little thing. We have been trying to find the best options for turn signals and moving the steering wheel easier. She has a suicide knob (like they used to have on tractors) on the steering wheel to help out with turning a bit. Rich and I think we have designed an soft, yet firm extension for the turning signal so she doesn’t have to let go of the wheel or have to lean so far forward to adjust it. Anyhow, she is doing great and will be helping us to drive long drives coming up in the next few weeks. She’ll have plenty of time under her belt by the time the driving instructor picks her up on August 5th for her first hour on the road.

We drove to Lincoln to see the Sunken Gardens. It is listed as one of the top 300 gardens to see in the United States. I went in April when they were all tulips planted there and the fruit blossom trees were all in bloom. It was really beautiful. I met a fellow photographer there who lives in Lincoln. He told me to come back at the end of June and see it again…that it would have all the summer flowers planted and blooming and the raised brick ponds would be filled with water (they were actually filling them with hoses while we were talking in April) and the lily pads would be blooming and the Koi fish would be swimming. Lily and I had a wonderful time walking around and seeing the thousands of plants they had there. The koi fish would come right up to the surface and glub glub at Lily. She said she felt like SHE was the fish in the fish bowl being looked at!

On the way back home, we traversed some random gravel back roads trying to find our way to the back side of an abandoned barn off the highway. We stumbled upon the Wildlife Safari, which is part of the Henry Doorly Zoo here in Omaha. It is obviously very separate, as they are dozens of miles apart, but you can drive around and see elk and deer and buffalo. They have some birds as well. There was nearly no one there, so we decided to go through the park. Afterwards, we FINALLY found the access road to behind the barn and got a few shots. I would like to go back at sunset some day and get some really wonderful shots of the sun setting over this barn. We shall see. Anyhow, here are some of the photos from my phone from the trip to Lincoln and back with Lily a few days ago.

We recently returned from a week-long trip to Destin, Florida. Rich’s parents live there and his sister and some of her family live close by as well. Rich’s brother and his family caravanned down and we had some nephews fly in from New England and Washington state as well as Tim from Colorado. Joe and Michelle, my oldest son and daughter-in-law had to do the adulting thing and couldn’t get off of work this time and they were missed. At any one time there were 20+ of the Messina Clan out and about terrorizing the area. We had a great time. It did rain several times but we never had a wash out day while we were there. We ate together for most meals and I, personally, managed to be in some form of water such as the ocean, the bay, or a pool for all but one day. My suit came home wrapped in a plastic bag because it was still wet. That is how it should be! It is hard to believe that the youngest in the clan right now is going into 8th grade. Mom and Dad Messina celebrated their 55th wedding anniversary on April 1st. The last time we all got together like this in Florida was for their 50th. I am only sharing pictures from my phone right now. I have yet to go through my camera and edit those photos. We were on the beach for a full moon and we were also in a wonderful location for sunsets. My Aunt Susan lives about an hour or so away in Florala, AL, and we were able to get together for dinner one night as well. It was a really nice trip and I am still finding sand in my purse…in the suitcases…all sorts of places. At least it is the soft, white, sugary sand! Rich and Lily will be going back for Labor Day this year. Rich and I have decided that we are going to make a bigger effort to see our folks more often. My folks are heading up to Omaha in September! Should be a wonderful time for a visit! They can experience was Husker Nation is all about! Here are some random shots during our stay in Florida.

Okay folks, I am playing catch up now! Nothing bad has happened…I have just been out living my best life and got behind on posting here! Here are some pictures from our game at CWS. For those of you not from Omaha, the College World Series of Baseball is played here in Omaha during the last third of the month of June. The top 12 college baseball teams meet together to play in a tournament to see who is crowned the best in college baseball. We ended up going to one of the first days of play. Rich then took a coworker and went to game 3 of the finals and watched the Mississippi State Bulldogs win the national title. The CWS tournament has been played in Omaha since 1950. It was sorely missed last year when it was cancelled due to COVID. We have a huge influx of visitors from the fan base of the teams who come to compete and also just baseball enthusiasts from all over. We had the pleasure of meeting lots of out-of-state visitors at our store looking to buy baseball gear. (They know where to go to get the best deals!) We had hot dogs and dippin’ dots and had a fantastic time cheering these young men on! If you ever get a chance to go, you should! It is such a fabulous time and we try to go to at least one game every year. It is called (appropriately) “The Greatest Show on Dirt.”

I would like to wish all of you fathers out there a very happy Father’s Day! I would like to highlight two important fathers in my life….my dad, Walt Neitzke, and my husband, Rich Messina.

My dad was born shortly after WWII and was raised as a young boy with a Navy pilot dad. He has an older sister, a younger sister, and two younger brothers. The moved around from places like Pensacola to San Diego and Hawaii, with home always being rural Michigan. He met my mom at Breckenridge High School and when he joined the army as a career after college, she went with him. My dad was an airborne ranger…that is code speak for “bad ass” as far as military standards go. I remember going to watch him jump when he was on the jump team with the 82nd Airborne Division at Fort Bragg, NC as a kid. He told me later on that he wasn’t fond of heights. He hated being at the top of the Eiffel Tower….yet he could hurtle himself out of a perfectly good airplane. My dad worked a lot and he expected a lot from his kids. I still don’t have lampshades in my house to this day because of having to dust the pleated lampshades growing up. That is okay because it was a lesson learned. Every time we moved, my parents would pull out the new yellow pages and search for the nearest Missouri Synod Lutheran Church. We would find a church home…and make it a church family by being actively involved. He was a strong leader of our family and provider. Now he is a gentler man, slowed by age and a mind that is unfortunately fading faster than his body is. Love you, Dad. This photo is of the two of us taken 5 years ago or so.

Rich, my husband, where do I even begin? He has worked so hard to provide for his three kids and me. He worked in the Air Force for over two decades and then went into business for himself…with no retail experience, and has made a really good go of it. Although sometimes I feel like he is a little kid in an adult man’s body, he makes sure that there is a competitive feel for just about anything…board games, exercise, joke telling…etc. He keeps life interesting and has taken all of us around the world where we have learned about new languages, cultures, and foods. (seriously…the kids have been to about 2 dozen countries and he and I have been to about 45) Let’s put it this way….if you are walking through the forest and there is a vine hanging from a tree….you can just about bet that Rich is going to swing on it. Road less traveled? He’s going to take it and drag you along with you. You are guaranteed to have a story when you are done. I have hundreds of those stories and so do the kids. When we all get together and remanence about those crazy stories….it is just the best. So happy Father’s Day to my favorite guy…the father of my kids, Rich. Here is a picture of Rich living his dream weekend playing in an over 40 hockey tournament this past weekend in Omaha. That grin says it all. Love you!

On Friday I was able to meet with my local oncologist and tell him we would keep going with what we had been doing. He called me a “boring cancer patient” which he told me was a good thing…and a compliment. I got my Lupron shot and then I was out of there for another month.

We had a good soaking rain Friday morning, which was fabulous as it has been very hot and dry for the last couple of weeks. It was great for my new driveway to cure, but goodness, we needed that rain. It cooled things down a couple of degrees (it has 10-12 degrees hotter than average for over a week now) and allowed the humidity to drop which was blissful. I have still managed to get my walks in, it just has to be early in the morning.

Friday night I was able to attend my first live Nazareth group in about 18 months. See here for what a Nazareth group is: https://nazarethgroups.com . I have been a part of this group for several years and they are like family to me. We were able to meet via zoom part of the time, but wow, that did not even come close to replacing the tight hugs I received and gave out to these wonderful people. With cancer and COVID over the last 18 months or so, it has been tough. Even though I was pretty involved in my parish, I felt like I was pretty much forgotten….except for these people. We are a pretty tight knit group and I love them to pieces. It was like my birthday and Christmas wrapped into one.

I have spoken with my kids this weekend and they are doing well. Adulting is hard and they are managing any curve balls being sent their direction. Rich was in an over 40 hockey tournament this weekend and I was able to make it to two of his games. They didn’t win, but they had fun and he has slept well every night. Lily starts driver’s ed classes this week. You have been warned.

I started taking fish oil to help with the joint pain per my sarcoma specialist. I used to take it all the time, but went off it before my first surgery and never went back on it. He also suggested massage therapy. I found our old foot massager and managed to struggle my way through 30 minutes of it last night. It made a HUGE difference on my feet. The pain has been reduced by at least half if not more. I am going to try and use it everyday. With as much walking as I do each day, it probably it a wise choice. Anyhow, I have been blessed so greatly as of late, and just wanted you all to know I am doing well.

I just got off a zoom meeting with my sarcoma specialist at the Mayo Clinic in Rochester, MN. (Did you know there are 3 Mayo clinics in the U.S.? Arizona, Minnesota, & Florida – just in case you need to know this to win a trivia game some day.) I had been checking every morning and every afternoon this week on my patient portal for the Mayo radiological report. It never showed up. I wanted to have them verify what the local radiologist has seen…that my pelvic tumors are shrinking. My specialist (who I absolutely adore and trust, by the way) said he didn’t even bother to have it read and measured by a radiologist because it was obvious to the naked eye that they were shrinking…which is AWESOME. He said out loud what I had been keeping pent up inside….”At least your tumors didn’t double in size.” That has been known to happen….a lot, actually. LMS is a fickle cancer. It is like playing whack-a-mole with treatments. With any treatment, you have a 30% chance it will shrink, 30% chance it will be stable and stay the same, and a 30% chance it will grow….on chemotherapy. I can’t imagine anything worse than having to go through the horrible treatments and side effects of a chemotherapy to then find out that it not only didn’t work, but it GREW. I hear about that so often on my LMS support group online. So it is working and working quite well. He said it normally doesn’t really become effective (the hormone treatment) until several months into treatment so all of this looks very promising at 10 weeks in. So we are going to continue to stay the course. He gave me a few suggestions about the joint pain. He was expecting that I would have some issues with that, as it is a very common side effect of anastrozole. He also eased my mind a bit with COVID vaccines and what I should and shouldn’t do. So on to the traveling part of my summer! We have a lot planned and I can’t wait to share it all with you in words and photos.

Tomorrow I go and visit my local oncologist and get my next lupron shot for the month.

Rich, Tallinn, and I walked over 5 miles this morning. We went pretty early but it was still pretty warm. I paused on this path and saw the sun shining through the trees and felt it applied to this day and how I feel right now. The sun is shining bright through the shadow of the trees…shedding rays of sunshine in the darker places. This totally summed up how I feel.

My parents go to a senior Bible Study on Wednesdays at their church down in Cypress, TX. They always have a praise report….a list of things to be prayerfully happy about. Today I have several. First off, I went out to lunch with a good friend I hadn’t seen or been able to talk to in person in quite awhile. We went to Shirley’s Diner….evidently a staple in Omaha, but I had never heard of it. Now I have reconnected physically with my friend, Erika, (thanks so much for lunch!) and I have a new place to venture to. I also saw an dear friend there from my days at Fort Crook Elementary. It was so awesome to see Viv and give her a hug! See? All good things! We are in the process of having our driveway replaced and it is looking great so far. The new windows are going in at the store this week as well, and they look great. Rich hired a new person and it looks like he will be a good fit…so that will allow Rich and his managers to not have to work so many weekends. Every person helps to lighten the load for everyone. I have been walking Tallinn to the store 2-3 times a week to work for a few hours at a time. I don’t usually work with customers, as our city mask mandate has expired, but I try and get out as much inventory from the storeroom onto the floor as I can…the kind of jobs others don’t always have time to do because we have been so busy. It keeps me active, helpful (I hope) to others, and involved in the store physically. The weather has been warm and sunny lately so I have been spending some time on my back porch with Tallinn listening to podcasts, writing, reading, or listening to audiobooks. I went to a new optometrist and he got me squared away with new glasses and contacts that actually allow me to see clearly. It really is the small things that are such blessings sometimes! I can’t tell you how appreciative I am of that….having 20//20 vision. I haven’t been able to see well for the last year and after going back to a different place 2 times, I gave up and just dealt with it. I am pleasantly surprised at how nicely I can see now. I thought it may have been the chemo affecting my vision. It was just not the correct prescription for my eyes. The biggest praise report thus far has to do with my progress on this new drug I am taking. I had my 3 month scans of my chest, abdomen and pelvis on Monday morning. I have called Bergan Mercy to have my scans sent to the Mayo Clinic as my sarcoma specialist likes his radiologist to read the reports independently as he knows more of what to look for. I would think it would be about the same as the results I got dropped into my local patient chart this afternoon. The local radiologist said all my tumors are either stable or show some shrinkage. Pretty good for only 10 weeks on this medication. This tiny white pill I take every night which makes my joints ache so badly and gives me more fatigue than the last chemo regimen I was on, seems to be working. I will take it…and gladly. There is no cap on taking this med, so I could potentially be on it for years, as long as it is working and I can withstand the side effects. For now, this leaves me 3 more months of peace of mind. I will meet via zoom with my sarcoma specialist on Thursday. Then I meet my local oncologist and get my lupron shot on Friday and I am guessing I will be continuing on the same treatment plan for 3 more months. I have a lot of traveling to do in the next two months. I think I am home for less than 10 days in July. I have a lot of photos of random life with the Messina family to catch up on and I hope to post those soon. When I lived in Norway….and then over the last year when I was not allowed to be in the sun because of my chemo I was on, I learned to drop everything and go outside when it is nice. I am spending a lot of time on my back porch with the dog. I have plenty to do inside but I can’t force myself to sit in the A/C doing computer work when I can be outside with the warmth of the sun on my face. It just feels too good. So I hope to catch up soon!

My Uncle Ken (my dad’s youngest sibling) and his wife, my Aunt Christine, stopped by our store this afternoon as they were passing through Omaha. We were able to sit and chat about all sorts of things. We also ended our visit holding hands and praying. It was a wonderful visit and I am so blessed to be able to see them! They live in Michigan and I hadn’t seen them in 4 years. This very likely could be the last time I see them, so there were lots of hugs.

Thank you to everyone who prayed for Hollie. She went to be with her Lord on Thursday. She will be greatly missed by not only me, but our small group of LMS friends who talk often. Today our group was able to cry and be mad about how unfair it is that she was taken from us so quickly and so young. She will be missed. I now lift up her husband and children in prayer as they learn to live their earthly lives without her smiling face at their sides.

This morning I went to the Cancer Center at Bergan Mercy to have my third Lupron shot. I also got my port flushed. I kinda felt like a car getting a tune up. An injection….a flush…. Anyhow, this officially starts my third month on Anastrozole, an aromatase inhibitor. I have had quite a bit of joint pain although the last three days I have felt better. I specifically have pain in my feet and it was better. So we’ll see if the Lupron shots are making the joint pain worse or not. I had this weird dream that I ran into our former parish priest, Fr. Michael Voithofer. He knew my feet were hurting and he knelt down to wash my feet, like they do on Holy Thursday’s Mass during Lent. He placed my feet in warm water and started to massage my calves and feet. If you know me well at all, I do NOT let people touch my feet. I am extremely ticklish and now with having had hand/foot syndrome for a year, my feet are very sensitive (although it is getting sooo much better now that I am off the chemo). I had been waking up and my arches were cramping and by feet were so stiff it was hard to walk until I really got moving. That morning I rotated and stretched my feet in bed before getting up, as I had been getting in the habit of doing and I didn’t have pain and my feet weren’t so stiff and tight. I was telling Lily and Rich about my dream. They thought I was a little crazy. I think it was divine intervention. I am sticking to it.

On June 1, I will have my CT scans of my chest, abd, and pelvis to see if these drugs are working. I will then teleconference with my sarcoma specialist at the Mayo Clinic on Jun 10th to see if I will continue with these AI’s or if I will have to go back on some kind of chemo. We have three trips planned in June and July, so noting having to throw in a new chemo there would be nice. I will meet with my local oncologist on June 11th to talk to him about what my specialist has recommended. Fingers crossed, I will then get another Lupron shot and move on to my next 3 months on Anastrozole. Anyhow, that is the medical itinerary I have set up for now. I did see a new optometrist on Thursday that I really liked. He was really helpful with helping me see better. We are going to try a couple of contact combinations over the next few weeks and see which one works best for me. I can already see better with the trial pair I have in now. I also have a pair of glasses on order that should fit me much better and allow me to see better than the current pair I have. Now to wait for them to be made and arrive.

I have been able to go back to Mass on the weekends as my parish is doing good physical distancing and people are still required to wear masks at most of the Masses. I have been able to see some people I hold close to my heart in person for the first time in 15 months. There have been tears and long, tight hugs that feel so absolutely wonderful. Today is the Feast of the Ascension of Jesus, a holy day of obligation here in Omaha. (some diocese celebrate this on the weekend – but we celebrate it on the day). I took Lily to school, spent an hour at the hospital for my “tune-up”, took a 90 minute walk with Rich and Tallinn at Lake Zorinsky, did some bookkeeping, went to Mass, grabbed a few groceries and spent some time doing some writing, reading and then listening to an audio book on the back porch with Tallinn in the sunshine. I am loving not being on Doxil and being able to be in the sunshine! I have been taking Tai Chi classes via zoom with a cancer support group here in Omaha for the last 6 weeks or so. Tonight was the last one. I have two black belts and nearly another in martial arts. I gave it the college try. It is just too slow for me. I can do the form that I learned though and I met a lot of neat people locally via zoom. That zoom meeting moved right into another one that had my sarcoma specialist from the Mayo Clinic as the guest speaker at a National LMS Foundation meeting. This is a great group of people living with LMS that have doctors and researchers and other various roles speak to us a couple of times a month. We are from all over the country and the zoom meetings are a chance to talk to specialists and ask questions. After the presentation is complete, the speaker leaves the meeting and we all chat about what is going on in our lives and ask each other questions. Tonight there was a gentleman in California who had questions about ports…about chemo. He is just starting on his journey with LMS. It is so nice to be able to answer some questions and support others.

About helping others with LMS….I have a couple of people I have met online that I have gotten close to. Katie up in Montana died 3 weeks short of me being able to meet her in person. I have a friend in the UK named Marie who I have bonded with. However, there is a woman in South Dakota that I have really spent a lot of time online with over the last….goodness…almost a year now. She was diagnosed several months after me. Her name is Hollie and we texted each other several times a week. Having LMS is like having a baby. You really can’t understand what it is like unless you have also been through it. Hollie and I were going through the trenches together with LMS and chemo. She could text me and ask me if Doxil made my armpits look a weird color, as if they were dirty. Well, yes, it does. We could lament about how it felt to be a mom with kids at home watching this horrible thing happen. Hollie is younger than I am and has younger kids….like not even teens yet younger. We could talk about the impact the illness we both have had on our husbands…on our marriages. I last spoke with Hollie Monday night…late. She had sent me pictures of her and her oldest daughter hugging in a hospital bed. She had some blood work issues and ended up in the hospital. She had some procedures done to correct the problem and then everything just went to hell in a handbasket. Her organs started to shut down and she decided to go home on hospice this week. She had to tell her kids on Mother’s Day that she wasn’t going to be around much longer. I spoke to her Monday night….trying to console her about her leaving her kids. I sent messages Tuesday and Wednesday and heard nothing. Not good. Her husband, Chad, sent me a message yesterday telling me that she has been unresponsive since Tuesday morning and it won’t be long now…that she was ready to go and just waiting for God to take her. It has been an emotional rollercoaster for me losing this young friend to this horrible disease that will eventually take me. I can’t imagine how hard it is for her two kids and her husband…and her mom, who has been battling cancer herself. So, my wonderful prayer warriors, if you are so inclined, please lift up Hollie in prayer that she has a peaceful passing…that her family will have the support they need to get past this very painful part of her transition to heaven. Thanks, I would really appreciate it! I am storming heaven on her behalf daily as well.