Sorry about last night. I had just reached a breaking point…and crumbled. But as I said, I don’t want to sugar coat things because life with cancer can’t be. It is a roller coaster ride. Yesterday I was still pretty much dealing with my ‘roid rage, which I deal with for a couple of days after chemo before I start feeling icky for a week. So no worries…I will be trading my bad mood swings that I try so hard to contain for nausea soon and will be back to my old self. I was also (thanks to the steroids) going on 4 hours of sleep. I was able to just collapse into bed last night…albeit very very late (or early) but thanks to a blizzard here in Omaha, I didn’t have to get up and get Lily going for school, so we all slept in, which was wonderful and needed. I did get an email from the state of Nebraska’s veterans department this morning. I may not qualify for VA benefits, but I qualify to have “veteran” stamped on my driver’s license and to have Air Force Veterans license plates. Sigh. There is that, I suppose. Rich will be getting his 1st vaccine in a couple of hours. I am happy for him. It will, in reflex, also keep me healthier. Since he is in retail and out and about in the store each day and in the public running errands for the store, he is less likely to bring it back home to me, which I have worried about.

Now on to lesser issues….like how to do my photography class project photos regarding hard and soft natural like in the middle of a blizzard. First world problems that will most likely have to wait until tomorrow when the wind and snow abate and the sun peeks out again. Off to get some work and home stuff done. Lily is off of school today. She missed 3 days of school for our trip to Colorado and now has a four day weekend to catch up. I told her it was a blessing from God for that (she is not good at playing catch up, unfortunately, or working independently from home). I am sure some of you heard her teenage sigh and eye roll from where you live. Have a blessed day everyone, and stay warm!

So many of you have commented on my great faith and my optimistic attitude, etc. Well, ladies and gents…I am going to vent and have a pity party for a hot minute, so here’s the flip side of a majority of my postings. I am human after all. Granted, my brain is saturated in steroids and I am usually really over emotional after my chemo treatment…so there is that to take into effect as well.

I did not mention that yesterday when I was seeing my doctor, I asked him about getting the COVID vaccine and when and where I could get it. It sounds like I have to make an appointment through my county health department. Evidently those people that are immunocompromised are somewhat shoved to the back of the line…the last ones to get their shots before the healthy public. So all the elder people across Nebraska will get their shots first prior to someone who is like me, who is young, but immunocompromised. Do I want to shove in line in front of someone’s grandma? Of course not! I would just like to be added to the same group. My group is set to start being vaccinated sometime in March…with the second shot being in April…then the two weeks after that to be completely set in the vaccine. That brings me to the end of April. That is 4 months from now. I had cancer surgery Nov 1st…major abdominal surgery that I had to recovery at home with. I started chemo straight away. I was very sick last winter as I had a rare reaction to the Gem/Tax I was on and the neulasta shots I was being overdosed on. It was really miserable. I went to the cancer center every week for treatments and to church on Sundays. That was it. Once they finally listened to me and I was taken off the Gem/Tax and put on massive doses of steroids for a month to help cure my lungs of the damage done, I started feeling a lot better. This was in March….when everything shut down. So, folks, I have been home since Nov 1st, 2019. I am sick and tired of it. It will be a year and a half of my life wasting away at home when I was given 1-4 years of life left. Granted, I am going to try and beat that, but those are the odds….and I am wasting away at my house. It really really sucks. But back to yesterday. Evidently my local oncologist is also the head of oncology at the VA Center here in Omaha. He said they have lots of vaccines and are giving them out to nearly everyone who wants them that is a vet. He said, “Too bad you all are vets.” We looked at him and told him we both were. Rich has been with the VA for awhile now since he was in the service for so long and because he has health issues due to his service and so he is tied to the VA. He is a card-carrying member. I had never applied because I didn’t really need to. I was told it would take less than 24 hours to find out if I qualified. Well, I was turned down because Rich is my husband and he makes too much money for them to deem me worthy of being a VA member. Rich is getting his first shot tomorrow. I have to wait 4 months. This really crushed me tonight. I am absolutely gutted about it and have been unable to stop the tears over the last hour or so. I am busting my behind to do everything I can to fight this cancer and I could walk out my door and be infected by some stranger or someone I know and die from COVID. I am just so mad about the whole thing. I am mad, I am upset, I am devastated. I am really mad at myself for letting me get my hopes up. I tried not too….but I couldn’t help it. Granted, I am lucky. I haven’t contracted COVID. I am careful. But I am so very isolated. Lily goes to school….Rich goes to work. I go to the next room to work all day. I have no idea what will happen in March when I have to change treatments. New chemo won’t be as good to me as Doxil has been. Most of them are more harsh. The aromatase inhibitors (which I am hoping to try as it is a non-chemotherapeutic) has the side effect of painful joints and muscles all the time. Sounds like a great choice, right? So then I have to face the fact that I may feel awful or be in pain from here on out. I feel like I have missed my small window of opportunity feeling good trying to save my life from this virus. My priest told me that maybe I should just chance it and live my life. But I look at my newly 16 year old daughter and can’t make that choice with a good conscience. Right now, I can’t stop crying and my heart hurts. And then the flip side of me feels guilty because I have friends who have died from COVID…and friends who have lost parents and loved ones….and here I am whining about my own life. To those folks, by sincere apologies. I will get over this. When I started this blog I wanted to be real and show the good, the bad, and the ugly side of it all. More of a memoir for my kids and husband, none of which even read this blog. So, here’s the selfish and pity-party me in all its glory. Now to go pull up my big-girl panties and get on with living and shove these feelings out the window into the blizzard that is heading our way….so they can blow far away and let my heart have some peace after expelling all the pain.

I forgot to take a picture of the awesome socks I wore yesterday during my infusion which my Impact Kickboxing fit family gave me. My excuse is that my stockinged feet were wrapped in ice bags during the Doxil infusion. An hour of freezing my feet…contracting the capillaries in my feet, hoping the Doxil won’t seep too far into my feet, exacerbating my hand/foot syndrome side effects. But they are super cute and I wanted to share them with you all!

I know I have inundated you with posts as of late, trying to play catch up and then adding bits and bobs here and there of randomness…but I got a message today via email that I am going to share because it hit the nail right on the head….especially for me…where I am right now. Each morning I get a message from the Pope…words of encouragement and/or wisdom through a email program called Missio. Even if you are not Catholic, this is such a great message. This was originally from his homily on January 6th, 2021:

“A journey always involves a transformation, a change. After a journey, we are no longer the same. There is always something new about those who have made a journey: they have learned new things, encountered new people and situations, and found inner strength amid the hardships and risks they met along the way. No one worships the Lord without first experiencing the interior growth that comes from embarking on a journey.” ~ Pope Francis

Prayers for you all reading this who are on a journey. It isn’t easy and can try and shake your faith. I certainly know by experience how that can happen….and to be cut off from your Church family for nearly a year doesn’t help. However, the Holy Spirit and those shoulder taps…the sudden thoughts that come into your brain from nowhere to contact a friend you haven’t talked to in awhile…and realize she really needed someone to talk to right that instant….those moments, if you are listening closely enough and following through with what you think you should do, reinforces your faith in a powerful way. So we are all on a journey of some kind. Some harder than others. Pack some q-tips for the way to clean your ears out to hear those messages…because some are just barely a whisper and some of those are the most important to hear. Love you all!

When Tim was younger, I called him Timbo Slice….a play on his name and a famous bare knuckle brawler turned UFC fighter, Kimbo Slice. Anyhow, Tim is an intense person. He has very red hair and a lot of it…so of course he has the tendency to be intense. Anyone who has every played a sport with him or been trained by him knows that he is focused and works hard. However, he really has a playful, funny side to balance out that seriousness. I was looking for some military paperwork this afternoon and found this note and coupons enclosed. It was probably from when he was a freshman or sophomore in high school. We actually talked about these “coupons” he gave me 9-10 years ago just this past Christmas as he wanted to play Monopoly. It is not fun to play monopoly with Tim. He is cut throat and always wins. Blech. Let me refer to to my former statement….Tim is intense. Playing board games can be fun or miserable. No in between. Anyhow, I mentioned I had a coupon to not have to play and he said I needed to stop using that coupon…that I had used it too many times now! Anyhow…below are the pictures…proof that I have kept this all these years and through a move. I will type out what it says as well…

“Merry Christmas!! (use these tokens only once) Sorry I didn’t buy you anything, but #1: you didn’t ask for any specific gift and #2: I spend all my $ on dad’s card. :o) I hope you like my pretty legit improv gift! I love you and I wish that I don’t just take all the things you do for me for granted. For how much you do, I don’t give you the respect you deserve and I apologize for that. On a brighter note, enjoy the gift! From your coolest and soon-to-be-tallest child, Tim Messina – in case you thout it was some other Tim :o) And the coupons were: Tim makes one recipe of your choice…..A free hour of reading with NO DISTRACTIONS…..Get out of playing monopoly free card!…..A free hour of TV with no distractions…..A day where I DON’T ask what’s for dinner…..Tim puts Lily to bed!…..A day without (Tim eating) fiberone bars – that means no farting!!…..and the last one…..A free hug! I admit I have never handed any of these back to him….and have used several of them multiple times. It was an awesome gift! I had Lily read this and she laughed and said, “Classic Tim. Sounds just like him!”

I had my 11th….yes, 11th dose of Doxil today! Today was also my day to have Zometa…the bone medication I get IV every three months. That helps seal and strengthen my bones so hopefully the one bone met I have in my lower spine will not grow or weaken the bone it is in…and also to help seal and strengthen the other bones so no more bone mets will occur. So far so good. Evidently it takes the calcium in my blood stream and syphons it to my bones. So I do take Calcium and vitamin D 3 everyday to help keep that in check. It is given IV. I had my Zometa first, because my results for my echocardiogram done last week had gone missing. No one could seem to find them. They finally located them as my zometa was almost done….all was good with my heart. Yay! So I then was able to get my anti-emetic meds given IV push into my port (this is the stuff that keeps the nausea at bay for about a day or so. Then I got a bag of steroids. This also keeps the nausea (and sleep, unfortunately) away for the next 48 hours or so. Then the red bag of poison came out and I got to watch the Hawaiian punch-looking fluid pump into my body for the next hour. I actually had probably one of the best infusions of all today. I say that because for the first time I was able to strike up a conversation with another patient. That really made the time go by faster and lifted my spirits. Of course now we are wearing masks and physically distanced, so we were talking very loudly to hear each other, but it was joyous to be able to safely talk to someone new…any someone actually. Normally, people keep to themselves…only glancing at people who are coming in to give them the cancer once-over. You know, sizing them up in their heads like a fighter would to another fighter. Asking themselves in their heads: How sick do they look? Wonder what kind of cancer they have? Wonder how many rounds they have done? You look for the tell-tale signs of healthiness….what is the color of their skin…how is their movement walking around….are they emaciated? But this older gentleman and I struck up a conversation that lasted a couple of hours and that was a God send. He is 80 and has cancer that is treatable. He has been on chemo for 6 months and has about 3 months left. He is a PhD in pathology and a retired teacher from Creighton. Since I was also a nurse a million years ago…we had a lot of talks about how much medicine and hospital care has changed in the last 20-30 years. I could talk to him about having LMS and he knew what I was talking about. His wife had had a pretty serious cancer about 20 years ago and had to be seen at the Mayo Clinic, where she had several serious surgeries. He talked about how he decided that he would no longer let the small things that irritated him about his wife bother him. He said that he decided that if God let her live and continue on, he would let things slide and not keep everything inside. He said their relationship gradually changed…for the better…and has stayed that way for the last 20 years. I totally understood what he was talking about because I am also living that right now with Rich. As I have heard a hundred times in my live and I have never really understood until now….”Don’t sweat the small stuff….and it’s all small stuff.” Anyhow, this doctor that I got to chat with for a couple of hours while we were getting our chemotherapy treatments really made the time go by faster, which is nice when you have your stocking feet encased in ice bags! For the first time in over a year, I didn’t have Nora as my nurse. I knew my other nurse, Rebecca, from all the times I have been in the infusion center. Nora did come over and chat with me for awhile. So I had 3 people to talk to today during my infusion. It was like a big party!

Plans….one more dose of Doxil on February 10th…that will be my 12th dose. Then I will have scans…meet with my local oncologist on zoom for the results. Meet with my sarcoma specialist at the Mayo Clinic on zoom to make a plan for March and onward. If there is growth…that means a new chemo agent. If there is stability, a chemo break and starting on aromatase inhibitors to try and attack the tumors by starving them of hormones. This would entail a shot once a month and pills everyday. This sounds so much more pleasant, right? Well, it comes with it’s own set of side effects that aren’t so fun, but hopefully will be manageable. Usually if they aren’t so fun, there are plenty of people on my LMS facebook group from around the world that can give me suggestions on what to take over the counter that helps counteract the side effects. So…the next 6 weeks or so are pivotal in my journey. We shall see! Whatever happens…happens…and I will deal with it. I am happy to say I checked off a bucket list item seeing the Maroon Bells. I checked off my first goal (different from my bucket list) to be at Joe and Michelle’s wedding and dance with my son. Next goal is to celebrate my 50th birthday on February 15th. It lands on President’s Day this year, so I’ll be one a 3 day break, which is allowing my sons and daughter-in-law to come home. I won’t be feeling great as I will be 5 days post chemo….but the activity and love I have gushing forth from my heart when they are around seems to push back the nausea a bit! On to Feb 15th!

So I am playing catch up at this point. I wanted to put out some photos from late Sunday/Monday. I was blessed to be contacted by my former co-worker from Academy International Elementary School in Colorado Springs from 15-18 years ago. Better yet, Renee and I have stayed in touch over the and we are friends. She and her husband, Dave, were kind enough to make the 30 minute drive from their home to Beaver Creek to meet with Lily and me. It was wonderful catching up with her! The years just melted away….and it was wonderful. I will have to say that we were all frozen by the time we parted ways, but it was so worth it!

I also had to pose with Tim for my January 12th “Kiss a Ginger Day” photo! I had no issues….he tolerated it well. I was just sorry I couldn’t give a kiss to my other favorite ginger, my other son, Joe.

We had such a fabulous time in our extended weekend in the Rocky Mountains! We were fortunate, as I was expecting like 2 feet of snow…put they are in a drought there as we are here in Omaha…but they had enough snow for skiing and snowmobiling. We have decided we need to go back to see the Maroon Bells again in either the summer or the fall so we can see the full scene…those three mountain peaks and the beautiful lake in front of them. The lake couldn’t be seen at all because it was covered in snow. I loved the snow version, so maybe the fall would be awesome as well! This was a bucket list check off for me….so I am looking forward to checking off some of the rest of my bucket list items….the Grand Tetons (again….maybe in snow this time?) and some other places out west.

Rich, Lily, and Tim took off bright and early today for a day on the mountains. There are some photos below. Rich decided to snowboard. Lily and Rich were back after their first run. Lily’s legs were just too sore from Friday, so she gets to spend the day with me. Rich was having a hard time on the groomed trail with the snowboard, so he swapped the snowboard for the skiis and went back out to find Tim. Lily and I are going to walk around Beaver Creek and hopefully meet up with some friends from WAAAAAAY back when later on. Here are the photos of them bravely taking off this morning!

One of my favorite photos of Tim when he was little was taken in Nov of 2004, in New Hampshire, as Tim was blowing on his hot chocolate in an ice rink watching his cousin, Casey, play hockey. He would have just turned 8 at that time. Fast forward to our time yesterday at Maroon Bells, CO. He was blowing on his hot chocolate again….and it was too cute not to share the comparison. Love this kid!

So yesterday, Saturday, we had a fantastic time! We took a 3 hour snowmobile ride through the mountains near Aspen to go to the Maroon Bells (a small mountain range that is tucked into the Rockies, that is absolutely beautiful. We have already decided we need to come back in the summer to see it then. There is a lake at the base of the Bells, but it was covered in snow and wasn’t visible. We also had the chance to feed some Canadian Gray Jays. Tim has joined us and he was my driver on the snowmobile and Lily rode with Rich. They fed us a fantastic grilled cheeseburger partway through. We came back to Beaver Creek and played board games in the evening.