A year ago today I had what should have been a big abdominal surgery to remove several pelvic tumors. All the scans done ahead of time led my surgeon to believe it could be done. Instead I woke up (still after a major abdominal surgery) but with the words “inoperable tumors” swirling around me.

Fast forward a year. I am still here. So are those pesky tumors. I have other tumors that were discovered in the weeks following that surgery. At this time last year, my life seemed to be quickly swirling out of control. Going from working out 5 days a week to being given a terminal diagnosis….it was all very surreal. But I mention again…I am still here. I am not as healthy as I want to be but I am more active than some people my age…or younger. I am fighting the good fight and trying not to let the chemo side effects drag me down. Would my spirits be higher if I wasn’t living in this COVID nightmare on top of this? Yes, definitely. I miss seeing people…I miss human touch and interaction. I miss travelling. I had a young man from Braasch heating and air looking at my furnace last week and it was such a thrill to meet a new person and interact with him! I had to force myself to stay in the kitchen and work on my pumpkin bread so I didn’t freak the poor guy out by lurking.

My icky week is ending and I am starting to feel better. Rich, Lily, Tallinn, and I went for a fantastic walk yesterday in Chalco along Wehrspann Lake. It was really nice and hardly anyone was there. I think Tallinn and I may mix it up some during the week and drive over there to walk.

I joined a discipleship workshop from my parish via zoom this past week. I wanted to share a couple of tidbits that were passed on my Fr. Michael Voithofer, missionary leader of ABLAZE…. “We are caught, not taught, in the Holy Spirit.” “God loves using sinners! His power can be demonstrated in us just as we are.” “Don’t be a couch potato Christian!” So on this All Saints Day, I wanted to spread those little nuggets that made me go “hmmmm” when I heard them! Have a beautiful week, and know that I am praying very hard for our country right now.

Okay, so I have been playing catch up on everything…what with company for nearly 3 weeks…the wedding…chemo treatments and now just feeling kinda icky for this week….but I really wanted to put up a few photos from our time in Kansas City for the wedding. I am only going to speak for myself, but wow….I just really had a wonderful time! Definitely one of the top 5 days of my life. It was so nice to see our relatives come together to celebrate Joe and Michelle’s wedding. It was even more wonderful to see the compilation of friends they have made over their lifetimes who came together to share in their love. It was evident that they have surrounded themselves with good people throughout their lives and it was so fun to watch all the interactions.

We arrived Thursday evening and all met for dinner at some outside tables at a Kansas City BBQ joint…which is just what you have to do when you are in Kansas City…get some good BBQ. I got to hug my Joe….whom I hadn’t seen since mid-February. Man, I had missed him! During dinner I got a phone call from the restaurant the rehearsal dinner would be at 24 hours later….letting me know they had to close down the restaurant due to the staff having COVID. Luckily, they had a back up plan and all turned out well. The videographer called about 6 hours before the wedding with the stomach flu….she was quickly replaced by one of the groomsmen’s fiancé and a go pro, as well as a friend of Joe’s who is a videographer. So there were hiccups (besides the obvious 5 week wedding delay due to the bride and groom contracting COVID the week prior to their first wedding date). The hiccups were all taken in stride as they came and a great time was had by all.

This was my first goal…my biggy…to make it to this wedding and be able to dance with my son. We did…to my favorite song, “What a Wonderful World”. I had been in my high heels for hours already that day so I had already ditched those and was wearing socks, but it was all good. Michelle danced with her dad to “Lean on Me”. Joe’s two sets of grandparents won the anniversary dance with 106 years of marriage between the two couples, to which the young twenty-somethings in the crowd all gave them a standing ovation.

Joe and Michelle went to Colorado for their honeymoon for a week of hiking and seeing the sights. They are now back in Kansas City moving on with their lives as a married couple. I am so very happy for them and was so very blessed to be able to be there to celebrate with them. I will certainly cherish all the fun memories made that weekend. My husband and kids can clean up pretty good when they have the occasion to do so!

Oh…and the next goal is my 50th birthday on February 15th, 2021! Onto my birthday!

Well, life is somewhat getting back to normal! We managed to eek out 2.5 inches of snow over night. The neighborhood streets are slick and icy…very hard to stop…but it will be 60 degrees by next weekend, so it won’t last long. It is pretty cold so I think my flowering plants are done for at this point…just when they got some moisture in our drought-laden area.

Joe and Michelle stopped by on their way home to Kansas City from their honeymoon in Colorado. It sounds like they had a great time together getting lost in the mountains. They were only here about an hour…just long enough for dinner and to pick up a few things. Please keep Joe in your prayers as he is still searching for that elusive spot on a local fire department. He would really like to get a regular paying job and is trying to get hired on….but it is hard without any experience.

My icky week has started, but I have a lot of things to do to catch up on so I am trying to keep my mind off of the nausea that wants to take over at times. I managed to get to Bergan Mercy cardiology lab and have my echocardiogram done today. It only took 30 minutes rather than an hour, so that was a pleasant surprise. I will be getting these echocardiograms done every three months now to monitor my heart. Doxil’s base drug, Doxirubicin, is heart toxic and normally patients can only tolerate 6 rounds in their lifetime. Doxil is wrapped in a liposome – so a fatty base that protects my heart more. It is so much kinder on my body…allows me to keep my hair…and have other more harsh side effects. I should hopefully hear something from my online patient chart in the next few days as to what the results were. I just had my 8th round of Doxil and my local oncologist was not on board with getting the echocardiogram up until I asked my sarcoma specialist at the Mayo Clinic to mention it to him. I had been mentioning it since I started this chemo regimen. Hopefully all is well.

Still promise to get some wedding weekend photos up as soon as I can catch up a bit. Special thanks to Michele Nagel for the wonderful candle….for Lois & Jim Doyle for their weekly spiritual cards that make my day…..and for Erika Campbell for an uplifting note that I received today on a day I was nervous about my heart health and just needed a pick-me-up. I realize that I am so very blessed to be doing as well as I think I am doing right now with this disease. I have a zoom friend in my LMS group that I also thought was doing well and it was posted yesterday by her husband that she only has a few days left here on earth right now. I was really heartbroken to hear that because even though I only knew her through zoom meetings, she was a beacon of light and so helpful for others. The fact that she is preparing to leave this world is hard for me to fathom….knowing that things can change so quickly with this disease. Please keep Jennifer and her family in your prayers as she prepares to move from this world to the next.

I am trying to play catch up right now! I have had company at my house since October 7th and tried to spend time with them rather than being on my computer too much, so I am behind in everything….blogging, work…life in general. However, I will blog it all out, just not all right at once. I wanted to put up my chemo treatment from this past Thursday, October 22nd. It was a big one…Doxil round #8, my bone medication infusion, Zometa, the IV steriods and anti-emetics, and then a flu shot to top it all off. It was 4 hours but no real side effects other than being a little tired that afternoon. Having company to occupy your mind is helpful! I had a few blisters on my feet this round, so I am starting to get toxic again…but it wasn’t too bad and there was no rash, which is so much harder to deal with. I will be having a echocardiogram on Monday morning to check the status of my heart, as doxil tends to do heart damage along the way if not carefully monitored. I made it to my first HUGE goal since being diagnosed and that was the wedding of my son and daughter-in-law. That will be a separate post (or 4) as it was a wonderful time had by all. Made the top five days of my life.

Well, today marks one year since that awful day in the ER that told us I most likely had cancer in multiple spots in my body. A lot has happened since then…major abdominal surgery, outpatient surgeries for a port placement and a bone biopsy. 10 rounds of 2 types of chemo. A diagnosis of stage IV Lieomyosarcoma….a rare and aggressive cancer that will eventually kill me. I have gone through waves of pretty bad depression and not being able to have hugs or even see friends for a majority of the year, thanks to a weakened immune system and then COVID 19 has made it really really hard. I miss everyone so very much. But as I type this today on my 1 year crapaversary….I am on the right side of the dirt, relatively healthy, and getting ready for my son’s wedding next weekend. I have so much to be thankful for and I do realize how blessed I am! The second lesson for today has one of my favorite verses…. Phillipians 4:13 “I can do all things in Him who strengthens me.” The Gospel lesson talks about being invited to the wedding feast….another parable that hits home.

I am feeling relatively well this week. My parents-in-law arrived on Wednesday and they like to keep busy, so I am trying to keep busy and still trying to stay safe as COVID cases are the worse they have ever been here in Omaha. I have developed some blisters on my toes again, so I am starting to get Doxil toxicity again. If it doesn’t get much worse, I am able to tolerate this easily. We will see how everything goes during the next infusion the week after the wedding. 6 days until the wedding! On to the wedding!

Yesterday I met virtually with my sarcoma specialist at the Mayo Clinic in Rochester, MN. What a strange experience! A medical assistant answers you online and talks to you about your visit…asking (of course) about insurance….then says stand by in the virtual waiting room. You will hear a doorbell and that will alert you that the doctor is connecting with you. I guess that is like the doctor knocking on the door of the examination room so you are not caught picking your nose….talking on your phone, etc. Then he is there staring at you! It worked out well because he could share his screen and go over my CT scans from March, June, and September. He talked to me more in-depth about my blood clot in my lung and my treatment. I was thinking that I would only be on Eliquis for about 3 months….now I know it will be much more long term than that. When I asked what long term meant….he said, “LONG TERM!” So there we are. We also talked about hormone therapy. We are going to hold off on that and keep that tool in my tool box for later….maybe when and if I get to be on a chemo “rest”. The plan is to stay on Doxil for a year. That is 5 more rounds. Then we may give myself and my bone marrow a chemo rest and try the hormone therapy. He mentioned that a drug is considered successful in clinical trials until you have 20% growth. Luckily I have not had any growth at all or new mets since starting chemo in December. So we are considering everything a success. My cancer itself is not impacting my life. The chemo is, however. But it is all stuff I can deal with. Doxil builds up in your body so I will at some point start having issues again. I need to have an echocardiogram soon to look at my heart function. Doxil is it’s raw form is incredibly heart toxic. So we need to be watching out for heart damage. I will mention that to my local oncologist (again) when I see him next (after the wedding). So more of the same is the name of the game right now. My sarcoma doctor quizzed me extensively on my pathology reports, CT scans, and my knowledge of LMS chemotherapy agents that are considered standard lines of care. I felt like I was back in nursing school! I got off the phone with him and I was sweating! I know he knows I have a degree in nursing and that I do research on my disease and it’s treatment. It was nice to know I could “hang” with his questioning and not sound like a novice. I also think it reassured him that I could talk to my local oncologist at a higher functioning level than most patients. I have to be my own advocate as my doctor (who is of retiring age) has probably not treated any other LMS patients in his career. So a plan is in place and I am ready to carry it out.

The icky week is over and I am feeling better although I can feel a lot of residual chemo reaction in my hands and feet. I will be getting a flu shot after the wedding…I need to ask my local oncologist his opinion on when during my 28 day chemo cycle I should get it. I asked my Mayo doctor and he said the day of chemo. The pharmacist said half way between my infusions. (so the opposite) Wondering what the tie-breaker would say.

We are officially gearing up for the wedding. Rich went down to KC for two days this week and took down all the wedding gifts so we would have more room to head down there next week. Rich’s parents arrived yesterday and my parents arrive next Wednesday in time for us all to caravan down to KC for the wedding! On to the wedding!!

Social media can now get off my back! I have filled out my ballot and turned it in! I had a lot of feelings dropping it off…this could very well be my last national election I am able to vote in. Lily was at my side…and she will be eligible to vote in the next one. It just made me pause. I hope it is not such a fiasco and our country won’t be so divided. But for now….I have put in my vote!

This is typically the week that I dubbed the “icky week” and it is not disappointing. It usually starts around Sunday and lasts until Friday night or so. So far we are on point! Good to know I have been on a chemo long enough to be predictable! Even though I am usually not having a lot of energy around this time, I am trying to get things done around the house and keep busy to keep my mind off of how green I feel around the gills. I got a lot done today….a 5 mile walk with Tallinn, cleaned out one of the hall closets, made Kalua pork (only took 20 hours in the crockpot), went through the kitchen cabinets and wiped them down and re-organized a bit, did an hour long Bible lesson on chapters 6 & 7 of Revelations, got quite a bit of work done for Play It Again Sports, touched bases with the rehearsal dinner venue (because I have one thing I need to do and do well – and I don’t want to fail at it!) ,emptied the trash and recycling and put it out….and finally getting to this blog, which I try to update once or twice a week. I think I will sleep well tonight. No worries….I still have plenty left to do on my list for the rest of the week!

I am including some photos from our walk around a couple of parks yesterday. We went to OPPD Arboretum and Standing Bear Lake. We hadn’t been to either before and loved both. Lots of opportunities for photos at each place….in fact, there were tons of photographers there taking engagement photos, newborn photos, senior class photos, and family photos. Fall is finally happening here in Nebraska this week but because Omaha is 12 inches below our normal rainfall, we have leaves falling….not really sprouting their pretty colors first. We dropped 20 degrees in 24 hours and the temps are divine to walk in now….any time of day. Hopefully that is how it will stay! I have also included a photo of a thankfulness pumpkin I am working on. What are you thankful for??

Today I went to Bergan Mercy’s Cancer center and had my 7th dose of Doxil. I had a few hiccups and was there twice the amount of time I thought I would be because of those hiccups (not literal hiccups…that is a side effect of some chemotherapies…my father-in-law had that side effect when he was on chemo the day after the infusion – although it sounds easy – I am sure it is annoying!). I am home and feeling jazzed thanks to the IV steroids. Although I didn’t officially have a doctor’s visit today, I handed his nurse a bunch of questions and she brought him up the infusion center to talk to me briefly. It does him good to get out of the basement sometimes! The biggest take away was that I am on this blood thinner, Eliquis, for 3-6 months. Sigh. My script said 30 days, but alas, that was misleading. I don’t want to throw a serious pulmonary embolism or have a stroke, so I will live with it. He would like for me to talk to my sarcoma specialist at the Mayo Clinic about whether I should stop chemo for awhile and do hormone therapy. I am curious to see what he says. I have a video conference set up with him on October 7th, so we will see. I was originally set to do 6 rounds only on Doxil, so we shall see. I will send him my recent history and my questions ahead of time so we can get down to the nitty gritty online. I am also going to talk to him about doing genetic testing of my tumors. This will let me know what mutations I have present and it allows (usually clinical trials) more pin-pointed meds to be used. Just another tool to have in the tool box.

Big news for Lily….her school has gone to GREEN…which is 100% in school. Granted, there is about 20% of her school whom has elected to go virtual 100% of the time…so the numbers aren’t overly high. She goes to school 4 days a week with Wednesday used as a cleaning day at the school building and the teachers catching up with the virtual students. She does much better in person learning, so I am happy for her. She is continually one of the last students out of the building each day after school, so I know she is happy to see friends again. After the wedding they will go to 5 days a week during quarter 2. Semi-normal life.

Huge news for Rich! He has signed a new lease to expand our current Play It Again Sports store and to create a close, but separate area for batting cages and other sporting areas. He has purchased two high end golf and sport simulators that will be in the store as well for timed rentals. As all this is going on, we will be repainting the store to adhere to the new color scheme Winmark (our parent company) has introduced. It is not my favorite, but at least it will be done per their specs. We have wanted to do this expansion for 4 years and it finally fell into place this fall. Can’t wait to show you the finished product!

News on Joe and Michelle in Kansas City…..they are doing well! They are both back to work. Joe has done all the countless firefighting and EMT certifications over the last 6-8 months and has been applying to fire departments near and wide. It is hard when you don’t have any experience yet and they are only hiring a small number. He does have a ride along tomorrow and I hope that goes well. He would really like to get hired on somewhere soon. Real estate doesn’t give Joe the steady income he would like to contribute to his family. I have chatted with both Joe and Michelle and it sounds like things are falling into place for the wedding so I am so excited to just plant myself in front of Michelle and have her put me to work on the Friday before the wedding…..and Saturday, the day of. I can’t wait to see Joe’s face when he sees Michelle in her wedding gown. He is going to be blown away! Yes, I am packing my tiny purse full of tissues and mascara.

Tim is doing great! He finally got to meet a friend of mine from here….someone I used to do kickboxing with….and now Tim does kickboxing with. Tim and Emma ( I totally adore her) are both such nice people with a lot in common…kickboxing, love of dogs, Nebraska, ME….so I am glad they finally met. Tim is working hard on a grad class dealing with sports nutrition (he took a lot of these kinds of classes at UNL). He will finish the class the week before the wedding so will have that weekend off of classwork! Of course, he will start the next class on Monday…so no rest for the weary! Tim seems to be getting into the routine of studying , working, and working out….I suppose I should add eating in there. Having the gym open is allowing him to meet a lot of new people that he will see almost daily, so that is really helpful. I know he misses the clients in Lincoln something fierce. We have a great UFC card this weekend so I can’t wait to text him about it!

Special shouts out to Lois & Jim Doyle, Michelle Krueger, Todd & Deb Banchor, and Susan Ferguson for the cards this week. For my LMS warrior queen friends that I have been in contact with a lot as of late: Liz, Hollie, Vickie, Marie, Vickie (yes there are a couple of them), and Winnie. I cover three countries in that short list. Special thanks to Mei-Ling who sent Tallinn some treats which he will love me forever for giving him….when Mei-ling should really be getting that love since she sent them. He knows I had treatment today and is stuck to my side. Tallinn has his 3 favorite balls with him at my feet as offerings of shared love from him. We will be having some snuggle time tonight before bed to make us both feel better. One more shout out – to my sister-in-law, Heather Messina. Happy birthday! Looking forward to giving you a belated birthday hug in 3 weeks in Kansas City!

I wanted to show my fit family at Impact Kickboxing that I am still matching….I used to be made fun of because I always matched my handwraps and my shirts. Well, since I am on blood thinners for a month, I am not supposed to be doing kickboxing…so I thought I would match my shirt and mask. Lily and I had white masks and a couple of white shirts to tie dye and I put it off all summer….well, we finally got them done this past week and I was quickly reminded why I hated doing tie dye anything. It has been since I was a kid that I had tie dyed something. I think I am safe to say never again. Blech. Kudos to those who enjoy the mess of it all!