Sixty years ago today, in Albuquerque, New Mexico, Rich’s parents eloped. Yep. April Fool’s Day. They were both the oldest children from their respective families, and I have heard their parents were not happy about not being a part of it. There aren’t many photos of that day, but I have a copy of one of them that hangs in my office, along with the wedding photos of my parents, paternal grandparents on both sides of our family, our wedding photo, and Joe & Michelle’s wedding photos.

We talked to Rich’s dad this morning. He has laryngitis and sounds awful but says he is feeling okay. Rich’s mother has advanced Alzheimer’s and is not aware of this special day. I am sure that is a sadness for my father-in-law. However, I wanted to make sure everyone knew to celebrate these two today. A 60th wedding anniversary is a pretty big deal, I think!

Well, I just met with my sarcoma specialist from the Mayo Clinic in Rochester early this morning. I am so blessed to have him as the man calling the shots. He has been with me for 6 years now and not only has he been a really good doctor, but he is a really genuinely good person and treats me well. I can’t say that about all of the doctors I have seen. We went over my scans in detail, comparing scans from 18 months ago to 6 months ago to this last scan in late February. The tumor is growing – not crazy, but it is growing. He is happy that everything else has remained stable. He stated that I have “one bad actor” in the bunch. As my brother, Craig, said, “At least it is only one bad actor and not the whole theater.” Yes, I am thankful for that. My doctor is the head of sarcoma specialties at the Mayo Clinic and he is running the monthly tumor board late tomorrow afternoon. He will present my case there. I have been presented before, but this time all the folks will get together and talk about possible next steps for me.

The first step would be to see if we can remove this bad actor via surgery. That would be the preferred method. However, this is not without complications, as this tumor appears to be attached to the larger tumor on my left pelvic wall. I asked him what would happen if we “poked the bear” the bear being the big tumor that has been inoperable. My sarcoma specialist put in a consult request for the oncology surgeon to look at my case and contact me. He will communicate with me via telemedicine zoom until I have to be there for surgery. Yes, the surgery would be at the Mayo Clinic. This would be an open surgery, so major surgery…so that means we would either drive or fly there and take a train back. It is a 19 hour and change drive from here. You can’t fly within the first 2 weeks after a major surgery like that. If they are able to do the surgery, they are hoping that I would just continue on the treatment I am on now and things would be fine.

Another option mentioned, which is my least favorite option, would be radiation. I am concerned because of the location of this tumor. It is sitting on the dome of my bladder. The radiation would most likely also hit my bladder, causing permanent damage. I don’t like that idea. I am hoping that would not be the case. I am not sure I trust the radiation folks here to do that. Radiation in Rochester would mean relocating there for a month or more. This is what I hope would be my last option. I hope I didn’t just jinx myself saying that.

Rich asked about chemo. My sarcoma specialist has a list of the different chemo medications we would be going to next if surgery or radiation is not an option. The first choice would be Trabectedin (Yondelis). It would mean I would need to get a port placed again and it means hair loss, severe nausea, etc…all the fun things that comes along with chemo drugs. It is given over 24 hours every three weeks. That is my next projected chemo drug. However daunting that sounds, I am still holding out that a surgeon can work on this and maybe avoid this altogether for now.

So, in summary, I am waiting for the results of the tumor board, which I will get Friday, I hope. Then I will hopefully be meeting with a surgeon via zoom from the Mayo clinic. I will continue on until then doing what I do…I have emergency medical training tonight for 4 hours….and fire dept dinner and meeting tomorrow night. I leave for Houston in about a week and I hope to have a plan in place at that point. We shall see. I have a blood draws twice next week before I leave and an IV treatment about 24 hours before boarding the plane to Houston. For now, I have a house to vacuum and laundry to get done. I still have a few posts here to make as well. For those of you praying for me, thank you. I made my doctor aware that I was going on a trip to Africa in June….so we shall see how everything progresses.

A lot of folks have reached out to see if I have found out much about what the next step in my cancer journey will be. I would like to know too! I mentioned before that I had some growth in one of my tumors in my pelvis when I had my scans in November 2025. I asked my local oncologist (whom I really like) if I could get scanned at 3 months rather than 6 months since LMS tends to just explode and run wild when it decides to activate itself. For new friends, LMS stand for Leiomyosarcoma. It is a very rare cancer than affects about 10 people in a million with cancer. Unfortunately, treating it is like playing whack-a-mole. What works for some, don’t work for others and vice versa. Some people say surgery is the only way to treat it while others have surgery and it is like poking the bear – it comes alive and spreads like crazy after being messed with surgically. Everyone is different and that is the hard thing about this disease. What worked to stabilize my tumors, led to the death of a friend with LMS. Anyhow, I had my three-month scans done early on Feb 23rd and saw my local oncologist late on Feb 25th. The local radiologist didn’t do any comparisons (which is what you have to do with EVERY cancer patient doing serial scans) and he skipped even talking about at least two of my tumors, one being the one we were concerned about growth. I don’t know if this man was having a bad day, was interrupted multiple times whilst reading my scans or what, but he totally dropped the ball on reading my scans. This was then a waste of over 2 hours seeing my oncologist as she had no results to talk about and was behind schedule so therefore, I waited for over an hour to be seen to find out nothing. It is a 30-minute drive one way to my oncologist as well. I was not happy. My oncologist put a call into the radiologist to re-read my scans. 10 days later, he finally posted an addendum, and it was talking in circles in medical jargon and basically said to send the scans to the Mayo Clinic and let them read them. So not happy. This was the news I got on March 6, the anniversary of Joe’s death, as we were driving to Kansas City. I had decided that day was going to be about Joe…not my cancer and this stupid cancer still managed to impinge on that day. My nurse navigator called (who is wonderful, by the way) and she made sure my latest scans were sent to the Mayo Clinic that day.

Fast forward over a week later….no word from anyone. I could see that the Mayo Clinic had received my scans and added them to my patient record. They had not touched them though. Finally I contacted my local oncologist and told her that someone needed to talk to the Mayo Clinic and let them know to read the scans and let them know I was having an issue and they needed guidance on what to do. I got a message from the Mayo Clinic two days later stating they had set up an appointment with my favorite oncologist, who is head of sarcoma specialties there. What is nice is we are doing the appointment over telehealth, so I don’t have to go there….yet. My appointment was set for April 8th, with the promise to contact me if an earlier appointment arises. I was notified and offered an earlier appointment yesterday, this one being early on April 1st. By today, I had multiple messages from the Mayo Clinic to get everything in place for this appointment. I think I have jumped through most of the hoops to be ready. I also was notified that my scans had been read by the Mayo oncology radiologist. They really know what they are looking for and are the cream of the crop when it comes to giving me ALL the information on what I am looking at. They even have a “patient view of the results” which is awesome because if you don’t understand a term, you can highlight it and see what they are talking about. It is an awesome program and I wish all hospitals offered it. Even with a medical background, it was helpful and I learned a couple of new terms.

I carry a large tumor load. This paragraph is more for my family so I don’t have to keep repeating everything. Honestly, someone once said I should put this on a caringbridge website, but I really wanted to keep my info to me…and here is a safer place for me to share everything in my life. Okay, here are the numbers. I have three tumors in my pelvis: the mass on my left side is 7.0 x 9.8 cm. It actually shrunk a bit (was 7.4 x 9.9 cm), the one on my left side is 2.1 x 3.8 cm and is stable, and the middle one (my problem tumor right now) is currently 4.8 x 5.1cm (growing from 3.9 x 3.9 cm). That is the one we are concerned about. The tumor in my L2 of my spine continues to be stable (thanks in part to Zometa IV infusions every 3 months to seal my bones to the cancer). I have a few spots on my lungs with one in my left upper lobe in the lingula (the word I learned today on that nifty patient scan program) that is 1.8 x 1.2 cm. They are keeping an eye on that one. I also had one slightly less than a cm on my right lower lobe. I have several micro nodules that in my lungs that remain unchanged from 2023.

When my sarcoma specialist and I started this journey 6 years ago (almost exactly), we decided together that we needed to decide when we felt a treatment was failing. Our agreed upon deciding factor was growth of 20%. If my tumor growth grew by 20%, it was time to move onto my new treatment. I have been so lucky. I am on my third treatment of this disease and have been on the last one for 5 years now. Do I have side effects? Yes. Have I learned to overcome most of them and lead a full life? Yes. How blessed am I to have the health to be able to travel…to be able to be a firefighter and EMT in my community? So blessed. Every extra day is a gift. The first year of fighting this disease was pretty rough…especially the first few months (I had a rare reaction to one of the chemo meds and it attacked my lungs and I just couldn’t breathe). I literally thought I would be dead in two years or less, that is how awful it was. Instead, I have been able to live and travel and do a lot of wonderful things, making memories with wonderful people. I don’t know the math, but I am guessing my doctor will just have me have more frequent scans at this point. I have a big trip planned in June to Africa and I will be going…and need the strength to make that trip. So we will see what he says. I just hadn’t had any growth in so long…I had been blessedly stable for so long, this was a shock. Is this the beginning of the end or the beginning of round two in my fight against this disease that will allow me more stability and more time? I don’t know. I know that I look at things a bit differently now. I have someone so close to me waiting for me in Heaven. I am no longer afraid of death. But I also have so much to live for. I have two great kids I love so much and a husband I thoroughly enjoy walking through life with. I will let you know what my doctor says when I see him next week. Until then, I am enjoying life here in Montana with my trusty companion, Tallinn, at my side. It is almost porch sitting weather. We both can’t wait!

Same deal with Australia and my good camera. There are several more for Australia since they had cuddly (and not so cuddly) animals to photograph along with some iconic spots in Sydney.

I finally went through and went through the photos on my good camera from our time in New Zealand. All the other photos were from my phone. My phone has a really good camera, but my professional camera can do some wonders as well. I have already told you about our trip, so here are the New Zealand photos from my good camera!

On March 6, 2022, our lives were forever changed with a phone call telling us our oldest son, Joe, and his wife, had been in a severe car accident in blizzard conditions in rural Colorado on I-70. Michelle was being transported to a local rural hospital with injuries. Joe didn’t make it. That was THE pivotal moment in my life. Afterwards, I would begin to think of my life as BEFORE the accident and AFTER. I had gone through a cancer diagnosis a few years prior to this and I had kind of done the same…before cancer and after. However, this changed us in ways I never could understand unless I had gone through it myself. Grief is not something that ever goes away. It is with you forever.

I mentally can’t handle going through how horrible it has been. How much guilt I have…not with Joe’s death, but how I am the shell of the person I once was. No one in Montana knows the bubbly person I used to be. That person died with Joe. Do I smile and laugh? Of course. But I can look at photos of myself grinning from ear to ear before the accident and see radiant joy. Pictures since then…you can see that the smile doesn’t quite meet my eyes. There is a sadness there that will never quite be gone. I feel awful for our remaining kids – as I just am exhausted with grief, and I want so badly to be a part of their lives but I know things have changed since their brother died. I am riding a fine line of trying not to be a helicopter parent to two adult kids and making sure they know how proud I am of them and how much I love them. My fear for their safety when they are travelling is pegged in the red zone…but they are adults and I have to try and step back and realize that without getting eyerolls. When you know the immense pain of losing a child, the idea of losing another is crippling. I have been told by my other grieving moms that this is normal…but it doesn’t help the feeling go away, knowing it is normal.

We went to Kansas City for the anniversary of Joe’s death. (I hate the word anniversary as it invokes something happy – put have yet to come up with a better word….commemoration maybe) We sent out texts and Facebook messages to his friends…the people we felt Joe considered family. We did this two years ago and had about 30 people. This year there were about 15 of us. None of his Army guys came as they are getting ready to deploy…God speed and my prayers are with you all! None of the fire department guys came. That was a hard one to swallow, but his guys were on shift that day and as would go in spring in the Midwest, we were under a tornado watch then warning. The folks closest to Joe were there and that was such a blessing. We met his best friend’s son, who has Joseph as his middle name. I got to hold this little man knowing that my Joe would have been over the moon to hear about, meet, and spoil rotten. I got to hug my daughter-in-law, after 10 months of not seeing her. Best of all, we got to talk about Joe freely. We swapped stories and laughed. I have told a few people that this day was a lot like walking out onto a frozen pond where someone has fallen through and you want to save them. You crawl out on your belly, distributing your weight as evenly as possible to make sure you don’t fall through as well. Having all of those people there allowed us to share our grief. It wasn’t like a huge boulder on our shoulders, but we all distributed the grief and we each had a little lighter load. It was really good.

I try to be very honest about my feelings. I have stage IV cancer and I am pretty much done beating around the bush and being polite about things. I was really disappointed in a lot of people that were close to me that did not reach out to me on this day. Several people did…and many weren’t the people I would consider family or tight friends. My child died. It is a loss that cannot even be fathomable to most people, and for that, I am immensely thankful. I wouldn’t want anyone to go through this pain. However, there are days that are really hard. The commemoration of his death is one of the biggies. If by chance you are thinking, “Cyndi, it has been 4 years. You need to get over it, ” you can unfriend me in all ways because you just don’t get it – and again, I am so happy you don’t. Most of our family members did not reach out or acknowledge the day, and that not only disappoints me, but really saddens me. Each year, it is another life lesson on who I consider a part of my tribe, and that number is small. How long will I grieve for my son? For as long as I love him…which is forever. If this was Lily or Tim, would it be the same? Absolutely. I am missing a piece of my soul that I will never get back until I die. So if you know someone who has lost a child….or a close family member, please just keep this in mind.

I wasn’t sure if I was going to write about this hard day, but this morning, Rich and I were called to a motor vehicle accident of a teenage boy who lost control of his car in snowy weather. Everyone was fine. The visual when the mom arrived and hugged her son close, both of them crying, was a lot to take in. Joe was in a bad car accident when he was about 17 and I was that mom. I totally got it. But then 10 years later, I was that mom who was brought to her knees by the loss of that same son. This woman this morning, went to shake my hand and thank me. I held her hand fiercely as her son sniffled in the passenger seat, visibly shaken and her eyes filled with tears. She told me that they were all just scared. I squeezed her hand and I told her I understood, that I had been there. I wanted to hug them both tight and say, “This is a second chance – please don’t waste it!” But of course I did not. I gave her and her son a smile and I said, “I am so glad he is alright,” and directed traffic on the highway so they could be on their way. The whole time I was out there on that call, I was wearing Joe’s structure gloves, They make me feel that much closer to him.

The pictures from March 6th… We stopped at Loess Hills Bird Sanctuary. We had met up with Joe and Michelle there once about the same time of year….when there were 700,000 snow geese stopping over. I remember that Joe found a snake (only Joe would find a snake), and he also finally warmed up to Tallinn, our dog, because his dogs weren’t with us. My Tallinn can be a real jerk around other dogs…nipping at their heels and ears and herding them…you know, the stuff that he is BRED to do. Joe didn’t like my dog because he was a pain in the tush around his dogs, but this was the first time Joe spent time with Tallinn as the only dog there. It meant the world to me when he told me that he could now see why I liked this dog so much. As we were driving to the restaurant, the storm clouds were gathering (again, spring in the Midwest) and there was a ray of light shining through. That has always been a sign in this mama’s heart, that her son is saying hello from heaven. Then Joe’s memorial shirt, worn by his parents and his sister, Lily…and the sign for our area in the restaurant.

Our last stop was in Cairns (pronounced CANS). We flew from Sydney to Cairns on Feb 17th. Cairns is on the northeast part of the country, and because we went way north, it was a lot hotter and more humid there. Cairns the town is not really large (at least not after being in Sydney). Their population is approximately 178,000 people. When we arrived and unpacked, we went to take a walk along the esplanade and they were having Chinese New Year dances and celebrations. Unfortunately, thunderstorms cut it all short. There was this adorable dog dressed up in a Chinese Lion dancer outfit though, that was adorable. We also quickly realized that there are the largest bats in the world that live there and nest in the trees….the flying foxes that we also had on Okinawa. These are huge, furry bats but they only eat bugs and berries. They can be the size of a house cat and have a huge wingspan. My brother-in-law marveled at them and their sheer size, whereas Rich and I were almost at home with them…like seeing an old friend again.

Our first full day in Cairns was spent on a large sailboat for 10 hours. Cairns is known as being a launching point for the Great Barrier Reef, and that was our destination that day. We were on a sailboat but it also had an engine. We motored out for 2 hours, towards Green Island. Rich and his brother scuba dived and Rich’s sister-in-law and I snorkeled. The water was very warm. They had us wear long sleeved and long panted wet suits to protect us from the jelly fish. We didn’t see any, which I was thankful for. We did see a few sea turtles from the boat and some coral and sea life in the water. However, the undertow was strong and the waves were pretty choppy so a lot of sediment was stirred up. You had to work hard to get anywhere in the current that day and the colors were not vibrant with so much sand being blown around in the water. We got off the sailboat and went to Green Island and spent some time on the beach there. We were pretty good about applying and reapplying sunscreen the whole day. There was no real way to get out of the sun. However, I happened to miss my middle toe on my right foot. It is now pretty itchy, so should start peeling soon. It may not have been the views we wanted, but it is a bucket list item that is checked off. We couldn’t wait an extra day because the guys can’t fly so quickly after scuba diving.

The next day, our last full day in Australia, we went to Kuranda. We walked to a nearby hotel for a bus pick up and then was dropped off at the Skyrail Rainforest Cableway. We got in a gondola and rode up the mountain, through the jungle. There were a couple of stops along the way up to see Barron Gorge National Park and Barron Falls. It was like we had been dropped into the jungle somewhere. At the last stop, we were in Kuranda. Kuranda is a mountain village known as the “Village in the Rainforest.” There were eclectic shops and eateries and a bird sanctuary, butterfly garden and koala garden. We chose the koala garden. On our way down the mountain, we rode the Kuranda scenic railway. Here are our last photos from my phone of that day…

I can’t tell express well enough how much fun we had on this trip to New Zealand and Australia. We managed to see and do A LOT during the 24 days we were there. If you ever get the choice to go….do it!

One of the really cool things we did while in Sydney, was to climb the Sydney Bridge. We started at about 6:30 pm and it took about 3 hours. We were all geared up in parachute outfits and harnesses as we were hooked onto the bridge the whole time. We climbed up to the top and then watched the sunset while on the bridge. We walked across the top of it and back down in the dark. We were not allowed to have anything loose on us…to include phones. They had cameras along the way to take our photos. We saw a rainbow over the Sydney Opera House just as we started out, which was pretty cool. Here are the photos from this once in a lifetime trip.

We had a blast in Sydney. We got off our cruise ship on February 15th…my 55th birthday – spending it in my 55th country. We took an uber to the hotel in the center of the city, right on the edge of Thaitown and China Town. We dropped our bags and met our super-awesome guide and driver for an all day trip to the Blue Mountains. Melanie (Mel) was our guide and she is a Bondi Beach girl. She was a riot and we had a blast spending the day with her. We went into the mountains and had a lovely day. Our first stop was at Calmsley Hill City Farm where we got VIP passes to go in and pet their koala, Jonah. We had fun walking around the farm.

Here are the views from the Blue Mountains. We went to several locations: Wentworth Falls, the Three Sisters sandstones structures, the Megalong Valley (where we saw kangaroos in the wild), and breathtaking views across Grose Valley and Magalong Valley.

Here are some photos from walking around town near where we were staying. With only a day or two from Chinese New Year, there were a lot of decorations up.

The next day we spent the day on the Hop On Hop Off bus, traveling around the city of Sydney and Bondi Beach. We had a really good time seeing the fish market (the third largest in the world) and then spending time at the Rocks, looking at the Sydney Opera House and the Sydney Bridge (also called the coat hanger). We then went to Bondi Beach and spent time on the beach and around that area.