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!

I can’t believe my 2nd son, Timothy James Messina, is 24 years old today! I was a labor and delivery nurse in the Air Force stationed at Scott AFB, Illinois when I became pregnant with Tim. Joe was about 15 months old and Rich was also in the Air Force and stationed in Columbus AFB, Mississippi, attending pilot training. We were having a really hard time trying to be assigned together and as I was working nights and parenting a toddler alone and pregnant…I decided being at home was the best bet for me. I was released from the Air Force and 3 months prior to Tim being born, I joined him in MS. It was H-O-T. Very hot. I don’t do heat well and wow, being pregnant didn’t help the heat. He was born on the first cool-ish day after a long hot summer. I had been suffering with horrible heartburn. I would chew trays of ice cubes a day…and still had heartburn. Tim was born with lots of long strawberry blonde hair. The nurses were amazed at how much hair he had! It was literally longer than mine! It hung down past his ears and down the back of his neck. Tim was born during the time when you were sent home 24 hours after the baby was born. My parents arrived when Tim was two days old and the first thing my dad said was, “That boy needs a haircut!” As the weeks went by the hair turned redder and redder….and nothing has changed. He still sports thick, firecracker red hair. He does have the temper to go with it….although he can be incredibly patient until he is pushed over the edge….then watch out. I remember when the boys were little, Joe, his older brother by 22 months, would push Tim’s buttons until he snapped. Joe would come running into the kitchen to hide behind me screaming, “He’s going to kill me!” and see Tim, face red and scrunched up in anger barreling after him, ready to do just that. Thankfully they get along a lot more than they disagree. When Tim was an infant, he would just watch everything around him. One of our friends said he had a “wise, old soul” and that was exactly what it seemed like. Tim was so inquisitive. His favorite time to quiz me on what he was wondering about was when we were in the car. He was obsessed about time. “How many minutes, seconds and hours until…..” That carries through to today where he plans out each of his days and gets pretty cranky if someone or something causes his schedule to go sideways. When he was two or three, he had a United States wooden puzzle that he would put together. I used to think it was hysterical that he would put in two pieces for Michigan (the mitten and the U.P.) and say, here is “Mish” and “Mish – again!” My father-in-law came to visit about that time and took the wooden puzzle and turned it over so it was just the wood side. He told Tim to put all 50 pieces together like that and he did. I will never forget what Rich’s dad said after that. “This kid is really smart and you are going to have your hands full keeping him occupied and learning.” He was so right! Tim listened to everything I was trying to tell his brother Joe (in kindergarten) about reading and writing and pretty much taught himself how to do both by the time he was turning 4. In preschool, Tim was really shy and so his teacher would help him by letting him read books to the class. He ended up skipping kindergarten and going into 1st grade…so he and his brother, Joe, were only one grade apart.

Tim was born in Mississippi, moved to Minnesota when he was about 9 months old, and then lived in North Dakota, Colorado, Okinawa – Japan, Norway, Nebraska, and then now he is back in Colorado. Tim has an affinity for languages as he did really well in his partial Japanese immersion classes for two years in Okinawa, Japan. Then when he moved to Norway, he took Norwegian and Spanish. By the time he had 3 years of those two languages in Europe (they teach foreign languages differently than they do here in the U.S.), he was pretty well-versed in both languages. Tim had a passion (actually it was more of an obsession) with basketball. He played basketball, baseball, rugby, and soccer in Norway. When we moved to Nebraska his freshman year of high school, he hit the ground running with basketball. His junior and senior year, he got back into rugby and played for the Nebraska all-star team and then played the first few years he was at the University of Nebraska-Lincoln. His studies started demanding a lot more of his time (he was on an full academic scholarship the 4.5 years he was there) and internships started taking up extra time set aside for sports of his own. He worked as an intern at Husker Power for several years. Tim got to teach strength, conditioning, and agility to the cheerleaders, dance team, the girls basketball team and the wrestling team…to name a few. He enjoyed working with the wrestling team so much that he volunteered to continue to help train them after he graduated.

Tim now lives in Fort Collins, Colorado. He is the manager and a trainer at the 9 Round kickboxing gym that just opened there. He is also four classes into his master’s degree in strength and conditioning training. Tim is a health nut and is always in a gym or out hiking. He loves kickboxing…as do I…and I would like to think that all those hours training in martial arts when he was younger helped shape him to be the great teacher he is today. He also belongs to a “meat head” gym where he lifts everyday. Tim is a big UFC fan and can spew so many facts about fighters and moves. I really enjoy watching with him. I have two black belts myself, and close to another one in a third martial arts program. Add to that two years of kickboxing experience and over a decade of watching mixed martial arts, I really appreciate watching fight nights with someone with a high fighting IQ. If we aren’t together, like tonight, we are often texting back and forth comparing notes on what is going on and what our predictions are. Tim wants to eventually work with MMA fighters, and I think he would be terrific at it.

So I have told you some of my memories of Tim as he was growing up…but I want to impress on you how incredibly proud I am of this kid. He is so driven and so organized with his life. He sets goals and then makes a solid plan to reach those goals. Tim mentioned he wanted to get back to Colorado. I know it was hard to leave his friends in Lincoln, Nebraska, where he lived for 6 years. However, he took the plunge and went out there to Fort Collins and started his life alone out there. I sure do miss seeing him, but I am happy he has gone out to where he wanted to be. He calls me a couple of times a week to keep me updated on his classes and job. It was great seeing him last weekend and I am looking forward to seeing him in a month in KC for Joe’s wedding. So happy birthday, Tim. I love you and I am so very proud of you!

First of all, Joe and Michelle have recovered fully from their COVID-19 battle. Michelle had it much worse than Joe, who only had minor cold symptoms. They are both no longer contagious but Michelle will have to take some time off of work until she can go back per their protocol in place. She works for the government and they have strict rules for these situations. They are not sure where they contracted it, but are thankful that their friends and co-workers they have been around all tested negative. What did quarantining together allow them to do? Get plan B going for their wedding! They called the venue and they had just had a cancellation and so they took that date. Their wedding party can still all make it, but they had to coordinate a bit with getting a new photographer, DJ, and someone to do the girls’ hair. So the wedding is now….drum roll, please….October 17, 2020. So 5 weeks past the first date, which was this past Saturday. I am not going to lie, it was a tough day for all of us, but especially the bride and groom…who had to let it pass like just another…when it would have been their wedding day. I had gathered some things for Michelle (and Joe) since I was unable to have a bridal shower for our side of the family for her. Many of you that are friends of mine on Facebook, knew I was putting together a recipe book for Michelle. Many of you sent recipes for the book. I had 100 recipes and it turned out great! So thank you from the bottom of my heart. They were able to open my box and open some gifts for their kitchen along with the cookbook. Now we are on wedding countdown again. A month from today!

Although we weren’t at a wedding this past Saturday, two people that were supposed to be at the wedding with us changed their travel plans from Kansas City to Omaha and came and spent the weekend with us. One was my brother, Craig Neitzke, from Houston. It was great to have him here when it wasn’t crazy (every time he has visited there has been a major family event going on with a lot of extra people). He got to visit the Harley Davidson store and our store for a little shopping before learning how to play Settler’s of Catan…our favorite board game we play at least one night a week. I think Craig enjoyed the cooler weather up here in Omaha! Our other visitor was our son, Tim, from Colorado! It was fun having him here to play Settler’s….and to also watch the UFC fights with. He and I have watched them together for years…actually over a decade. If we aren’t together to watch them, we text each other, but it is much more fun live and in person. I have missed him!

I want to send a special shout out to those who were just so wonderful last week when everything hit the fan and my spirits hit the dirt. Todd and Deb Banchor….you are the best surrogate big brother and sister a gal could ask for. They brought over pie….and more importantly, hugs. Wanda Oslica talked me off the preverbal ledge with a phone call. Paula Buck brought over chocolates (always will cure what ails you!) Spending time with Craig and Tim, and lots of time on the phone with Joe and Michelle helped as well. I haven’t seen Joe since my birthday in mid February. I am missing my oldest child A LOT. I will see him in 4 weeks….I just need to get through another chemo treatment next week and pray that the blood thinners worked and my lungs are clear when I am done. I will be having an teleconference with my sarcoma specialist from the Mayo Clinic in Rochester, MN on Oct 7th to confirm that we will continue with what we have been doing. That is my hope!

Do you ever feel like the world is working against you? I have been in that constant state for about 11 months now. The blows just keep coming. Just when you think there is something good to hold onto, it gets ripped away. Sorry…just feeling a little raw at this point. The wedding has been postponed. Both Joe and Michelle are COVID-19 positive. The big, beautiful wedding they have been planning and I have been escaping to when my days have gotten dark, has been scrapped. I don’t know what their plans will be from here on out. We will just wait and see. For now, I am trying to figure out what I am going to do with all the wedding and rehearsal dinner stuff I planned to surprise them with that now are null and void and have the wrong dates on them. I am pleased to say that they are both handling this much better than I am. I am crushed, but that is my selfish human side that has been literally living for this event since my diagnosis. Ah well, I am sure this feeling will pass as they move on to celebrate when and where they can. They both have cold symptoms but are doing fine and quarantining at home with their dogs. I am sure they will have plenty of time together over the next few weeks to figure out a plan that works for them.

Today I went and got my three month CT scans done of my chest, abdomen and pelvis. I decided to follow the advice of the nurse I saw last time in the radiology department and asked for them to access my port rather than try and start an IV. That is what it is there for, afterall…easy access and less pokes for me. They didn’t have the proper equipment and had to jerry-rig a huge needle coming out of my port. I am not certain the radiology nurse really knew what she was doing. Made me a little nervous. This port goes directly to the large blood vessel feeding into my heart. I think I shall see if I can swing by the cancer center and have them access my port for me prior to the scans in 3 months. Yikes. That being said, the scans themselves went well and went by quickly. The radiology department was packed. I went to another waiting area to stay away from the crowds, even though we were all masked and separated somewhat. I was called almost right away and done within 20 minutes. Trying to secure a 1.5 inch large bore needle out of my chest took longer than the scan itself, I think. (that is 3 times the size of the need they normally use) I hadn’t had anything but water since dinner the night before, so I got something to eat and headed home. I had been home about an hour when my doctor’s office called. He wanted to talk to me about the results of my CT scans. I have to admit my heart jumped into my throat because I had a zoom meeting set up for tomorrow to talk to him about the results. If he was calling me so soon, something must be wrong. So there is good news and bad news. Good news first, because it is good news. My tumors were all stable or showed some shrinkage. Yay! This is what I wanted! So this is good. The bad news, and the reason he needed to call me straight away was that I have a small blood clot in my left lung. He says these are not uncommon and are easy to treat. He called in a prescription of Eliquis for me (which Walgreens was out of, so I have to wait until tomorrow to pick it up). It is a new generation blood thinner which I will be on for 30 days. My doctor seems to think it will not cause any issues. However, I have to take it a bit more easy….try not to do anything that could cause me to bleed in anyway. So kickboxing is on hold. However, I think the speed bag should be fine! Anyhow, so that is the deal…I am relieved that all is going well with the tumors and the chemo. I think I could have had this blood clot for a few weeks now and it hasn’t slowed me down, so I would love to just treat it and be done with it! I have a wedding to dance at in 8 days! I kept asking my doctor about the meds he was putting me on and restrictions, side effects, etc. (I am a former nurse and I also like to know what is going into my body.) He just kept saying, “Don’t fall.” I finally told him I was planning on cutting a rug with my family on the dance floor at my son’s wedding next weekend and I would try my best not to fall! Don’t worry, I am not taking this lightly….this would have totally freaked me out a year ago. However, I will take it easy and listen to my body. But on to the wedding!!!

Well, it is the icky week…the week after chemo where I am tired, emotional, and feeling nauseated. I was able to take my five mile walk this morning but just couldn’t handle a kickboxing workout today. I didn’t have a good night’s sleep and that added to the tiredness of the day. I did get a phone call from my local oncologist’s nurse this afternoon. I had been pleading with my doctor to run a hormonal receptivity test on my tumor that was removed from my pelvis in Nov 2019. It was an uphill struggle to get him to run this very simple test that should have been done straight away. Anyhow, the test took all of 4 days to get completed. My tumor came back to be greater than 90% positive for estrogen receptors and greater than 70% for progesterone receptors. This means my cancer could be treated in other ways than just chemo if I needed a break or when it stops working. I could actually use hormonal therapy to combat the growth of my tumors. There are many LMS thrivers out there that have never been on chemo and have had stability on drugs that stifle the growth of the cancer through hormone blockers. Because my tumor is so highly receptive, there is a change that will work for me if I need it as well. It is just another weapon in my arsenal. It was a small balm in my day. I am unhappy that I am having to educate my own physician and fight so hard for these tests that should be commonplace. But tomorrow is another day, and even though I am feeling a bit green right now, I am going to go settle into bed with a book for awhile and hope that sleep comes more easily.

I am long overdue for some special thanks…and I don’t want to forget. Thank you so much to Fiona Macklon for the gorgeous flower arrangement! Thanks for remembering it was my 6th round of Doxil and what a big deal it was to get there! Thanks also to Kathy Martz, who send some yummy edible arrangements for the whole family to enjoy. I think I am going to try to recreate those chocolate covered apple slices. Wow! Also thank you to my Uncle Steve for the Christmas ornament. I am fighting my best fight right now and I appreciate you supporting me. Brekk Macpherson….my good friend and housemate in nursing school…thank you for the wonderful plaque. Both you and my Uncle Steve went along the same vein….cancer can change your life but there are a lot of things in your life that cancer CANNOT take from you. Thanks for reminding me of that when sometimes the days are darker than others.

Well, off to bed to try and continue to recover from the chemo a bit before the big shin dig in Kansas City (my son’s wedding) in 11 days. (Not that I am excited and counting or anything!)