Okay last one today for photos….can you tell I am playing catch up? This was from my back deck and then the street in front of my house a few nights ago….actually Sunday night, because Rich was elsewhere in Omaha and called me to tell me to go look at the sky. I was already out with my camera taking photos! It was crazy beautiful! God’s canvas….even in the city.
I mentioned about a month ago, right prior to Labor Day weekend, I traveled three hours down to Lawrence, Kansas to see a sunflower farm I had been reading about for 3 years. At some point you just have to go. I got there during the daylight hours and stayed until the sun set fully. I was the last person out of the field. Anyhow, I have finally sifted through the photos and done the post processing. I was there alone in a sunflower field for almost 2 hours so I took a lot of photos! Anyways, as fall starts to fade a bit, here are some of my favorites!
A couple of weeks ago, an alpaca-loving friend of mine, Kathy, got a group of gals together to head out to the countryside to visit an alpaca farm. Evidently it was alpaca weekend, so there was quite a to-do about the whole thing. I took a ton of photos. The owners are wonderful and sell alpaca fur (more like fuzz) made items. I got Lily a teddy bear that feels like a cloud. I also got a few ornaments for Christmas made by a lady I met there. We met the girls…then the guys….then the studs. We fed them carrots and got to walk in the pens and pet them. Their farm is only 30 minutes from Omaha and yet it is hilly and spacious and just gorgeous….although I wouldn’t want their driveway in the winter! The farm is up on a hill. The wee little white cria (baby alpaca -see….you have already learned something!) with the eye patch wasn’t doing so well…stumbled and fell while we were there. It was absolutely adorable, but had an eye infection that ended up in sepsis. So this is a tiny tribute to this little guy who was not long on this earth but was adored by many.
Okay, it was yesterday, but I have been busy! October 11th, 2019, I had that fateful ER visit that changed my life forever, finding out I had masses throughout my body. I knew it was bad then…it wasn’t until a month later I found out it was Leiomyosarcoma…and still a month after that that it was stage IV. But, I have picked October 11th as the crapaversary date.
So much has happened since then….surgeries….biopsies….outpatient procedures….two different kinds of chemotherapies over 16 months….a trip to the Mayo clinic….countless CT scans, PET scans, and MRIs….dozens of appointments with doctors and specialists and nurse practitioners. All in all, with a Google MD life expectancy of 2-4 years, I am doing pretty well at the 2 year fighting point. My doctors believe that the “benign” tumor removed from my uterus during my hysterectomy in 2015 had LMS in it. It was just such a large tumor that they didn’t thinly slice all of it. So I may have had this for years longer….but have been aware and fighting it for 2 years. Either way, I am feeling pretty good. I have gone back to the gym and have been working out like a normal person, thanks to the pushing and prodding of the YMCA LiveStrong program for cancer survivors and thrivers. I actually took 8 classes at the Y last week! I spent my crapaversary traveling 3 hours down to Kansas City, Kansas at 0600 with Rich in our truck and trailer to move Joe and Michelle’s furniture to their new home in Lee’s Summit. That took about 5 hours…all of it in the rain…then we drove 3 hours home in time for me to make my 6 p.m. LiveStrong class. I helped schlepp boxes and chairs and bins, etc up and down stairs. I was a hot, sweaty mess, but I was able to be there and able to give a helping hand, which was a big morale booster for me. I was so happy to be able to be there to help out, even if it was in a small way.
So yes, I am still on the right side of the dirt and this is my crapaversary photo I put up last year and thought I would adopt it from here on out for as long as I can use it. Thanks to everyone for their support, prayers, and love. I feel it and am sending back my own love to you!
I have decided to spend some time driving the countryside and taking photos. I love the country….especially during this time of year. So I went for a drive on Friday towards Tekemah and in and around Blair, Nebraska’s countryside. Here are some of the photos I took! Here is a piece of Nebraska for all of you!
My parents came for a week long visit the second week of September. I took them for a ride to Tekemah, Nebraska to visit the Master’s Hand store and have the world’s greatest cinnamon rolls. We also went down to Lincoln one day to tour the International Quilt Museum and to take a stroll around the Sunken Gardens. On a cooler morning we also walked around the OPPD Arboretum here in Omaha. They were even up to going to one of Rich’s softball games. Our store has a recreational league team that plays on Sunday evenings. I think they managed to make the game that started at 9:30 p.m.!
It was really great having them around for a visit. Sometimes you want to have your parents see what you have done with your life as an adult and visit your home (and there is the flipside as well – sometimes you don’t!) but when you have terminal cancer, you just want to spend as much time with your friends and family as you can. My dad had a mini stroke (TIA) about 13 years ago and it affected his vision. Both his eyesight, his memory, and his general awareness of what is going on is failing pretty quickly. I don’t know how much longer he will know who I am….as I don’t live near enough to see him often. Travel is hard on him – going to new places, even if he has been there a few times…it is always new to him, and he gets even more confused. It is a big job for my mom to travel with him. Thankfully, they are willing to fly and we were able to get wheelchairs to meet them at the gates in Chicago to get them to their connecting plane. (They flew direct to us from Houston but in flying to see my sister in Indiana they had to connect in Chicago). We’ll be going down to see them with all the kids in November for Thanksgiving, which we are all looking forward to.
While my parents were here, I took several photos of them when we were out and about. I have put many of them on here for our other relatives to see. These photos were taken a few days after their 53rd wedding anniversary!
I am somewhat behind on all the things that have been going on in my life, but I am slowing catching up! I want to first go over some most recent news…stuff that is only minutes old. I always text my family members first, then wait a bit before putting information on here, but the text has been sent, so I am golden!
Rich and I met with my sarcoma specialist from the Mayo Clinic via zoom about 30 minutes ago. He went over the results of the CT scans of my abdomen, pelvis, and chest that was done back on Sept 9th here in Omaha. His radiologists agree that everything is stable…maybe even a bit smaller. He was happy that I had my COVID booster and my flu shot. We agreed to give my immune system a break and put the idea of a shingles vaccine on the back burner for awhile. It always jolts me a bit when he talks about me having advanced cancer because I am able to be so active right now. I know that will not always be the case, and I no longer wake up every morning thinking this was all a bad dream…but for now I am feeling pretty good. I told him about my magic supplement, MSM, that is allowing me to have some joy back in my life. It really has cut down the pain in my joints tremendously. So much so that I started the Live Strong program at the YMCA. I have also taken a POUND class where you do aerobics with drum sticks…quite fun but I was sore for…well, I am still sore! I am trying a Zumba class tonight which may or may not be embarrassing. I feel like I have rhythm and am pretty coordinated, but I bet everyone thinks the same thing! We shall see… The Mayo doctor is excited that I have good quality of life and we’ll rescan and evaluate in December. So this is all good news.
Friends…I read a Bible verse recently that really stuck with me. Proverbs 18:24 says, “There are friends who pretend to be friends, but there is a friend who sticks closer than a brother.” So many “friends” of mine dropped out of my life when I was diagnosed with cancer. Some of them were not surprising but others lack of interest in my well-being was really hurtful…and some of them so deeply that it is still hurting me today, nearly 2 years later. However, there have been some really wonderful surprises as well. People who I never thought would step up and walk by my side have done so. One friend, who has been in my life for 24 years, through thick and thin, and Minnesota blizzards….and raising 6 kids between us with husbands with jobs that took them away quite often…is my friend Judi. She lives in Minnesota and we don’t get to see each other often enough….but goodness, the months and years just melt away whenever we are able to talk. She and her husband were visiting a city 2.5 hours away from Omaha and made the time to drive to see Rich and me for a couple of hours before heading back. It was so great to see her…as you can see, we are both grinning like idiots. I laugh as I think about a song I used to sing in the Girl Scouts a million years ago when I was a brownie…..’make new friends, but keep the old….one is silver and the other’s gold.’ She’s my golden oldie, and I mean that in the nicest way!
Tallinn has a friend as well. Our mailman, Tony, is the nicest guy. He stops whenever we are out and about and gives Tallinn (and all the other dogs in the neighborhood) a treat. Tallinn knows the word “mailman” and knows a mail truck on sight. I have avoided every taking him behind our store on the weekends because we have the 2nd largest post office in Omaha that shares a wall with us. There are DOZENS of mail trucks parked back there on the weekends. Poor Tallinn would probably stroke out if he saw them all. It is bad enough when we are walking in another neighborhood and I have to tell him “That’s not your mailman.”, when he sees one driving around. It is like having a five year old and an ice cream truck comes around the neighborhood giving out free ice cream everyday. Tony will even leave a dog treat on top of the package he leaves on our front doorstep. I have given him boxes of dog treats in the past, and as I type this, I think it is time to help refresh Tony’s stores again. Anyhow, he’s the best.
Tim is my youngest son and 25 years ago today, on the first nice day of the fall in Columbus, Mississippi, this red headed boy entered into the world. He was quiet and just would stare at everything and everyone…taking everything in. I once had someone tell me he was a “wise soul” and I think that pretty much sums him up. For many years he was pretty shy. However, he was very smart. He taught himself to read and write at age three by listening to me trying to teach his older brother, Joe. Tim has the typical redheaded stubbornness and that often plays to his advantage when he is trying to achieve a goal. Speaking of goals, I have never met a more driven person in my life. He sets goals and works very hard to attain them. I am now thinking back to the hours upon hours of basketball shots he took in the rain in Norway on our cobblestone driveway. He once got called out for not knowing enough about other strength and conditioning coaches in the U.S. – now he can rattle off their names and pedigrees….and most likely has listened to their podcasts or read their books. His desire to be the best in his field is admirable and I think that any athlete that trains under him will always get his 100% best.
Tim currently lives in Morgantown, West Virginia. He is taking his 2nd to last class for his master’s degree in Strength and Conditioning Coaching and he works as an intern at WVU. When Tim turns 26 next fall, he may well be in a different location, but I know he’ll be training elite athletes and doing right by them. I can’t wait to see what this next year holds for him. As for right now, he is living in a beautiful area and even though it is 2 days drive from us, he is doing what he loves and he is learning a lot. That makes a mom’s heart feel a bit better when I can’t give him a hug on his quarter century birthday. So, I will take refuge in putting a bunch of pictures on this blog of him today….to honor him. I love you so much, Tim, and am so very, very proud of you. I know you are working so hard to get to a place where you can do what you want and get paid for it! It will come, and you will soar in your field.
A lot has been going on in my life! I have just had my parents here for a week, visiting from Houston. It was nice to have them here for a visit as I know it isn’t easy on either of them to travel away from their comforts of home. But that is for another post. This one, I want to catch you up with what is going on with me health-wise.
I have been on anastrozole for 6 months now. The chemo therapy – Doxil – that I had been on for a year has probably run its course in my body. I am no longer having any of the side effects of that drug. My hands and feet are not swelling and turning bright red….I am not sensitive to the sun, and my skin and mouth are not so sensitive anymore. You don’t really realize how bad it has gotten until it is better. Rich used to rub his hand along my back against my bare skin and it was like he was using coarse grain sand paper. My hands and feet were even more sensitive, as were my gums and the insides of my mouth. I lost the ability to whistle because I just couldn’t purse my lips to do it. Weird stuff like that. Fear not, I am whistling again, although I have kept my soft bristle tooth brush. The anastrozole has its own nasty little set of side effects though. I have mentioned how this tiny little white pill that I take once daily turned my life inside out. Almost over night I felt like I was 85 years old. It literally sucks the youthfulness out of my body by blocking all estrogen and progesterone in my body. My joints were swelling in my hands and feet. My joints…my shoulders, knees, ankles, and especially my feet and hands were in a lot of pain. If I was still I was fine and once I was moving, I was fine. But any transition between the two was awful. Going to Mass was awful. The sitting then standing then kneeling then sitting then standing? Catholic calisthenics were so painful. Yet this little pill was working against my cancer…so I had to find a way to tolerate the side effects. I tried taking claritan in the mornings. This is a random allergy medicine that works really well with joint pain in a lot of cancer treatments. I didn’t notice a big difference. So I started taking tart cherry chews at night. They were supposed to help with joint pain as well. Fatigue is another symptom. I crash about 4 or so in the afternoon. I just hit a wall. I can slowly climb that wall, but as the week progresses, it is harder.
On August 28th, I attended a zoom meeting with an organization called A Time to Heal. The meeting was about cancer patients and supplements. There is ALWAYS that kind individual that insists that if you take certain vitamins or minerals in high doses, it will cure my cancer. Well, even though my cancer is rare, it is well documented and it does NOT respond to any such thing. If it were that easy, it would be a treatment, I promise you. This wonderful female pharmacist from UNMC talked about that to an extent. How to tell people thank you, but not thank you. I remember a time before Rich and I were married…so over 30 years ago, and I was in the car with his family. His brother, Joe, was telling me his definition of nagging. Tell someone once that is informing them. Telling them twice is reminding them. Telling them three times is officially nagging. I am using this gauge when the same person comes up to me each time he or she sees me and gives me suggestions on how to cure my cancer with mega doses of vitamins, strict diets, and other strange, off-the-wall things. Sigh….I have a couple of those well-intentioned people in my life and it has been a struggle being polite about it. Besides, 90% of the time, I don’t want to talk about cancer. It doesn’t define me, and if it does, I am not living my life the way I should. Whew, boy, let me step down OFF my soap box and get back on track. Anyhow, this wonderful pharmacist was leading this zoom presentation for those cancer survivors and thrivers. She went through a LOT of information. What vitamins and supplements interact with the different meds we were being treated with. She got to a slide on joint pain from aromatase inhibitors, which is what anastrozole is. She had suggestions for joint stiffness and only one for pain. It was something I had never heard of. I had been taking Claritan and tart cherry without much success. I quickly starting looking up MSM…the supplement she suggested. It is a sulfur that is naturally produced in your body. Not only does it not interact with meds, but it helps with joint pain and strengthens your finger nails and hair. Bonus! I couldn’t find it at first, so ordered it from Amazon. I have since found it alone at HyVee – if is usually combined with glucosamine and chondroitin.
On Sept 2nd, I had my meeting with my oncology nurse practitioner (whom I adore) and asked her about it. She didn’t hold out any hope that any of the supplements work but it isn’t something that could hurt me, so give it a try. I got my lupron shot (see photo below) in my hip and I was off. That needle is not for the weak of heart. It is injected to the hilt in alternating hips every 28 days. I stopped by HyVee and got my COVID-19 booster shot. It ended up knocking me on my back for about 2.5 days. Although in all honesty, I think I had contracted a bad cold from Lily about the same time, which may have been why it was so awful. Everything ached so much worse….I was running a fever for about 36 hours and slept for 20 out of 24 hours the following day. Rich and Lily spent that weekend in Florida with his parents. By Sunday I was feeling human, but not great. I went to church and got down on my knees and like Susanna in Daniel 13:44, “The Lord heard her cry.” I was just so tired. Tired of cancer treatments and hurting and just being TIRED. I literally just had tears running down into my mask. I was a hot mess. I didn’t want to take the MSM until Rich and Lily were back just in the off chance I might have a weird reaction to it. So on Tuesday, I was feeling good and started the MSM. It started working almost immediately. I am not even taking the full dose of 3 pills a day…only two. My pain has decreased by about 70% and I am praising God for hearing my cry.
This week I started the LiveStrong program at the YMCA. I am moving so much better now and strength training will only help. I had my pre-evaluation last night and could almost leg press the entire stack of plates. The guy recording our maxes at that station was amazed. I don’t have thick thighs for nothing…they are pretty darn strong! By far my weakest link is flexibility in my shoulders. Past injuries and disuse has made them pretty stiff. However, Sunday night I was able to warm up Rich by throwing the softball back and forth with him, and that felt good. (not the first 2 throws – but after that!). So all in all, things are going well. I just got back from our local grocery store where I got my flu shot. Whew. Enough needles already! I two weeks before the next Lupron shot and then zometa IV bag treatment through my port. I was told I need to get a shingles vaccine at some point as well, but that will wait a bit, I think!
I did have scans last week…my regular three month scans. I received the results in my online patient chart on Monday. The two nodules I have in my lungs are stable. No growth. This is good. The lesion on my spine at L2 is stable. Also good. No new spots in chest, abdomen or pelvis. This is great. The larger masses in my pelvis show some shrinkage. Even better! So that tiny white pill is working….and now the big white capsule I am taking daily is helping with the severest of the side effects. Life is good. The next three month CT scans will be in December…and I may just wait until January. For now, I am putting the worries of cancer growth in my back pocket and moving on with my life. Matthew 6:34 says, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day’s own trouble be sufficient for the day.” And that is a tough lesson for a big planner like me to learn…with the diagnosis that I have. However, living each day, one day at a time, was the very best advice my surgical oncologist ever gave me. I blew it off at the time because I wasn’t in a good place to really hear its meaning of living one day at a time. Anyhow, I am overly blessed with great news for this post. Thanks for celebrating with me!
Fifteen year ago yesterday, we were given this tiny, timid, dirty little girl in bright new clothes and shoes by Director Ye, the director of the Shangrao Orphanage. We met them in Nanchang, the capitol of Jiangxi province, in China. We had been doing the “paperchase” for her adoption for months…then the waiting began. We lived on Okinawa, Japan at the time, and Joe was 11 and Tim was nearly 10. We got the call from the adoption agency and we were on our way. We were one of two families adopting special needs children that morning in Nanchang. The other was a little girl named Faith…going to a home in Michigan. We had met her mother while trekking the Great Wall of China outside Beijing the day prior. Little did we know when we heard that American voice and struck up a conversation, that we would be spending much of the next two weeks together…and 15 years later, would still be in touch. I have already texted their family back and forth today! Faith and Lily spent time together in two cities in China as our families accomplished all the adoption paperwork, and we even met them for lunch in Michigan several years back. Now our daughters are juniors and both functioning as only children as their older siblings have grown and left the nest. Evidently Faith is getting her nose pierced for her adoption day gift this year! Lily won’t even get her ears pierced, so I don’t have to worry about that quite yet. We were given Lily and told to go to the hotel and spend time with her until the next day, where we would go before the magistrate and she would officially become our daughter. We were given 24 hours to decide if we could do this…if we could go ahead and take her as ours.
Lily was exhausted and traumatized by being taken from her foster mother and being on a bus in the summer for 3 hours and then placed with a family that didn’t look or smell or talk like anything she had ever seen. Even the toys we brought for her scared her at first. She had never seen a stuffed animal. She was so tiny….20 months old and wearing 9 month clothing. She had never been in air conditioning. It was so hot outside and we had to dress her so warmly inside. We couldn’t get her to drink the formula we had. All water has to be boiled in China…every hotel room comes with a boiler pot to make the water potable. She wouldn’t drink it. We started feeding her rice congee….like a soupy rice mixture. We were told not to introduce too many foods at once, but she was STARVING. Literally. We mixed pieces of chicken in there…then some carrots and beans. We fed her a lot of snacks we had brought with us. Teddy Grahams were a quick favorite. We gave her fruit and veggies. She ate us all under the table….for about 6 months. We found out that the formula she had been drinking up until that point had traces of lead in it (I had heard this and had her lead levels checked upon returning home). She loved water and apple milk. Yeah, haven’t seen it since I left China, but it was a staple for her while we were there….apple milk. She was very quiet and stoic that first day….never smiling and trying her best not to cry out loud. Have I mentioned that witches in China are blond and white? Yeah, I don’t think she understood that, but still, I was the last person she wanted to spend time with. The boys played ball with her and she just watched….until suddenly she picked up the ball and threw it hard at Joe, who was so surprised, he pretended to be knocked over. She laughed. We all just stared. The ice was broken after that with the boys. I knew enough Chinese at the time to tell her that they were her brothers and what their names were. She loved her Baba (Rich – her dad). They snuggled together and she crashed hard that first night. For a guy who wasn’t sure about all this daughter stuff, he sure was wrapped around her little finger pretty quickly. He wasn’t around very much when the boys were really little because the Air Force had him flying all over the world. I could tell he was going to make it different with her as much as he could. He was giving her a bath that first night….it had been weeks since her last one…her feet were so dirty and the dirt in her toenails…ugh. I was working with the translator to get paperwork signed ahead of time for the adoption the next day. He came out in a panic. First of all, Lily wouldn’t sit in the water. She just stood. She was afraid of it. He thought she had pooped in the bathtub and was freaking out. False alarm…she had been holding a teddy graham in the crook of her sweaty arm and it fell into the tub water. The whole thing still makes me laugh. He tried to brush her teeth…something totally foreign to her. He also let her watch him shave by putting white shaving cream all over his face. She DID NOT like that at all! So today is the official day the Chinese government gave her to us to be our daughter. She stopped being Ling Guang Su and became Lily Su Grace Messina.
I don’t know what her big brothers would say, but Lily has definitely brought life into our family that wouldn’t have been there without her. She is so funny…so smart and inquisitive. Lily is now 16 and a half years old…driving with a permit and working at Rich’s store. She is a junior and loving her classes, especially psychology. Lily is unabashably afraid of bugs of all sorts. She is the queen of miniature origami. She is NOT a morning person and can pop up with weird facts about all sorts of things. She makes my day better and I wish that her teenage years wouldn’t have been marred by my cancer diagnosis. I am super honest with her about all that is going on with me. Although she never buys much of anything or asks for anything, she is so much fun to go shopping with…or on a photoshoot with. She has a great eye with composition for photography. Lily is also a fantastic artist. She blows me away with her talent. She is also in German IV, which I find amusing that my Chinese American daughter speaks German. Lily has been a great travel companion on our trips here and there. She left Canada a few years ago with a love for Tim Horton’s, maple candy, poutine, and Banff National Park. I am so very blessed to have had her as my side kick and daughter for the last 15 years. My life is so much fuller for it.