I got up early today and did my kickboxing workout…took a cold shower because I could not stop sweating….and then headed to the cancer center for my oncology appointment, blood work, and chemo treatment. I also got my second dose of IV Zometa….not a chemo drug, but a drug that helps seal off and strengthen my bones so I don’t get more bone mets (I have one in my L2 area). So I got the works today and was there from 0845 to 1400, so a little over 5 hours. I am including my kickboxing photo from this morning and my chemo photo (which my awesome oncology nurse, Nora, has taken for me for the last 5 times since Rich can’t be with me). The green bag has ice in it. I ice my hands and feet for the hour that the Doxil is being infused to hopefully stave off some of the hand/foot syndrome I have. I went on a walk this evening with Tallinn, Rich and Lily. I was cool and breezy….very nice. I hope that holds true for tomorrow morning. I then went grocery shopping later this evening and it was still pretty empty. Omaha is legally requiring masks in public buildings and places you can’t properly social distance starting Monday. A majority of folks have already been doing that. Anyhow, got almost 3 miles in today walking. Not bad for a chemo day. But I am pooped. Heading to bed with the hopes that reading a book will allow me to sleep and not let the IV steroids I had today keep me up most of the night. G’night peeps!

Yesterday was the five year mark since my first surgery. I had a hysterectomy due to a pretty large fibroid and then ended up having an appendectomy. The appendectomy showed signs of cancer…a carcinoid. Then on September 1st, 2015, I had a right hemicolectomy….where they took out the right side of my large intestines to make sure it hadn’t spread. It hadn’t and I was given a clean bill of health and given my marching orders. The large and fast growing benign fibroid was considered nothing. However, there is a chance that it was the beginnings of the leiomyosarcoma I have now. Sigh. I never had a follow up scan. No one ever thought to check me again. I have mentioned before that I have a couple of friends who are going on this cancer journey with me. One has finished her chemo regimen. It has been so hard on her and I am thrilled she no longer has to have poison pumped through her veins. The other friend has finished her radiation and chemo and got to ring the infamous bell yesterday, celebrating the completion of this treatment. I am thrilled for both of them, don’t get me wrong. I would never wish cancer on anyone. However, the green tendrils of jealousy wound their way around my heart and squeezed….hard. I will never get to ring a bell. I will be on some form of treatment for the rest of my short life. This is my new normal and I was mad and jealous and completely crushed for about 20 minutes. I remember a good friend of mine, now in Heaven, Rhonda, telling me in tears that her new normal was chemo every week for the rest of her life….until the end drew near. I remember not being able to fathom the idea of that….to be on chemo for the rest of your life. Yet here I am. As soon as this one doesn’t work, they will try another. My new normal. I even muttered the words into Rich’s chest as I sobbed last night that I try never to say because really….I am doing quite well right now….”It isn’t fair.” Then I dried my tears, plucked up my courage, and put that moment behind me.

On to better news. I really am feeling better. If you follow me on Facebook, you know that I have started adding a Kickboxing workout into my week days. I have done three so far and I am pleasantly sore and have been sleeping better. I was so active before I was diagnosed with this cancer and with surgery, chemo which wore me out, and a month of massive doses of steroids…I have gained 20 lbs since November. Stress eating has been a part of that as well. Some of you who have been stuck at home and gained weight over the last few months with the COVID-19 pandemic can probably empathize with me. Double that time at home for me. Anyhow, I love kickboxing and my awesome husband was able to get me some goodies from the store….puzzle mats, kettle bells, a XXL stand up heavy bag. I took a whole day developing workouts to put on a big flip chart so I could have direction and variety. Thanks to my son, a kickboxing trainer, I got enough ideas to write out the first 10 workouts. This is all set up in my garage. It feels great to hit and kick my aggression out again. Tallinn does NOT like the big bag. When I hit it, he feels it must have been attacking me, so he attacks it. Barks like crazy and my dog is not a barking dog. He can go days…even weeks without us hearing a peep from him other than his manly deep groaning sighs he makes sometimes. It is going to be an uphill battle to get back into kickboxing shape and flexibility that I was at when I had to stop last October, but I am putting forth the effort. I am contemplating putting up photos of my fit fam from Impact Kickboxing here in Omaha on the walls. It is hard to do it all alone.

I am continuing my long morning walks with Tallinn. This morning, I think all the butterflies in Nebraska must have hatched overnight. It was CRAZY how many of them we saw! There were thousands of them! Tallinn with chase after them…and their shadows…so pretty sure he walked an extra mile just zigging and zagging after them and their shadows. We also saw several rabbits and 4 wild turkey. Pretty eventful morning today!

First off, pardon any typos. I had my eyes dilatated this afternoon for an eye exam and my eyesight is not back to where it should be yet. I didn’t really broadcast it widely, but I got to go away from home for a long weekend this past weekend! People comment about how much being quarantined for the last 4 months or so has been. Tack on another 5 on that for me from when I had surgery, got my diagnosis, and started treatments. I have been at home FOREVER! (my trip to Mayo Clinic does not count). However, last week my parents arrived at our home to spend a few days. They live in Houston, a hot spot, but they had been very very careful for the several weeks leading up to their visit. It was really nice to spend some “in person” time with them. It had been nearly a year since I had seen them…before my diagnosis. They left on Thursday morning to head towards my sister’s house in Goshen, Indiana. We left that afternoon and caught up with them in Joliet, Illinois that night. That left us just a couple of hours of driving on Friday. We shuttled my dad to ride with Rich and Lily and I drove my mom in her car. We had to go through Chicago…around it really…but it makes no difference; driving in Chicago is never fun. Blech. That is all I will say about it. I enjoy visiting there but wow….could never live there. Tallinn got to come along as well and was a real trooper the whole time. He is a great traveler.

My sister, Pam, and her husband, Brian, have three kids. Kara turned 21 on Friday. Alyssa turned 18 on Saturday and had her high school graduation party on the same day. Micah is almost 12. Pam and Brian will have their 25th wedding anniversary tomorrow. So there was a lot to celebrate at the Pfeil household! We arrived Friday afternoon to Goshen to help with the set up of tents and tables and chairs for the open house on Saturday afternoon. By Saturday, my brother, Craig Neitzke, had flown in from Houston and driven down from Detroit to spend the day as well. It was very warm on Saturday, but that did not deter any of the guests from coming and helping Alyssa celebrate. She had 12 varsity letters, so she knows a lot of people. Of course, with COVID-19 going on, the open house looked a little different. I was outside with a mask trying my best to keep a six foot distance from everyone but Lily and Rich. I didn’t eat through the buffet line. All this crazy stuff that never used to cross our minds. I did have a piece of cake and it was AWESOME. My sister made it. Alyssa will be going to Manchester University about 90 minutes away and will major in elementary education and play women’s basketball. It was awesome to be able to be there to help celebrate all these awesome occasions. We all gathered together for brunch at the Pfeil’s house on Sunday morning and then took off to come home. It was a very short trip with a lot of driving (9 hours each way) but it was so good to get away. It was fun to play cornhole and realize that Tallinn has to be kenneled up because he leaps in the air to catch the bag and takes off with it. The other great memory is that my brother, Craig, can really push my sister’s buttons. It was fun to sit back and watch that. Siblings at their best.

I thought Tallinn could use a little lifting up. He is in for a night of snuggles because I am whipped tonight after chemo this morning. He is currently laying on the floor by my side rather than in a cozy spot in the living room he prefers because he feels I need him. What a gift! I will remind myself of that when he lunges towards any of the two dozen rabbits we’ll encounter on our walk tomorrow morning….

This morning I had blood work done…all good…a doctor’s appointment, and finally my 4th round of Doxil. Rich was able to be with me for all of it this time. He was truly surprised at what my chemotherapy chemicals actually looked like. It IS bright red! The doctor did not have any news on the testing of my tumor that I asked him to do (from surgery on Nov 1, 2019). He hadn’t heard anything yet…and I wanted to make sure it was actually ordered. My local doctor is going to send the CT scans done last month to my sarcoma specialist at the Mayo Clinic in Minnesota. Monday I will call his office and get a zoom meeting set up to discuss how things are going. The cancer center and infusion center were packed as tomorrow is an observed holiday and they are closed. And so it is done…ready to enjoy the next couple of days before the “icks” set in on Sunday. Tallinn seems to know I have a new dose of poison swirling in my veins, as he is stuck to my side right now. What a God-send this little guy is…especially since I had to forego our long walk this morning for treatment. God blessed me with him, that is for sure. He makes me smile everyday, no matter where my mind is heading. On to getting tasks done for the next couple of days!

I got an extra week off from chemo to allow my rash to heal (which it is) and my blisters on my hands and feet to heal (only one new one this week! Whoop whoo!). I go into the Cancer Center tomorrow morning bright and early to have labs drawn, see the doctor again and then go to chemo. I have been walking earlier in the morning (around 0700 or 0730 usually) and I still come back soaking wet from the humidity, which is neverending right now. Tallinn is not a fan either, I can tell, but never turns down a chance at a walk. There are way too many bunnies to lunge at (my right arm is now 2″ longer than my left thanks to that) and turkeys and their babies (I call them goblets) to stalk to turn down walks in the neighborhood. My son, Joe, passed his EMT national registry exam, praise God! He has applied to a couple of fire departments and is now playing the waiting game. Tim has started his third grad class and just found out he was named 9Round trainer of the year (2019) for Lincoln! Lily passed her Personal Finance class with flying colors for summer school and now we are moving on to studying for her driver’s permit, now that the DMV is open for business again. Rich, Lily, and I just celebrated 10 years since we moved to Nebraska…five in Bellevue and now five in Omaha. I am studying Spanish everyday on Duolingo (you compete against other people around the world….dangerous for me because I am pretty competitive), and have been trying lots of new recipes out on Rich and Lily. I got a chance to see two friends from my kickboxing gym last weekend at a drive by baby shower that was for one of them. It was so wonderful to see what I now call “outsiders”! My good friend Wanda Oslica brought Lily and me Chic-fil-A for lunch and a natter. It was so wonderful catching up and giving this woman a hug! We were stationed in Norway with them and then followed them here to Nebraska. Their son, Zac, is best friends and best man for my Joe – who is officially getting married Sept 12th because I got the invitation today! Yay! Made my week!

So the fuzzy head statement….I have three people that I am in contact with at least once a week. All three of them are currently going through cancer treatment. This morning on my walk, I was called by my friend, Todd Banchor. He is like a big brother to me and I met him at our Bible Study Group called Nazareth from St. Gerald. He actually is in remission, but is still getting some outpatient maintenance treatment. I am so happy for him that he is beating cancer! I prayed so much for him last year during his time of uncertainty. He calls me every week to make sure that my head is in a good place. He and his wife dropped off some beautiful flowers last week and they still grace my dining room table. Then there is my soul mate, Fiona Macklon down in Houston. We lived in Norway together. She is originally from Scotland and I could listen to her talk all day long…that accent! She is also stage IV….and it is a club you don’t want to belong to, but the members are tight. She and I text each other several times a week and she sent me some wonderful honey bandages that I am going to use on my skin when it decides to go all wonky on me again in about 10 days. Then there is Kathy Trudell. She is also in my Nazareth group. Yep…12 of us and three of us are in chemo treatment…actually there may be four….anyhow, it is a fabulous group of Christians who I just love to pieces. They are family. Kathy has breast cancer and has been going through everything about the same time I have. We got our ports surgically placed about a week apart and then started chemo about the same time. We were texting this morning and taking pictures of our heads and comparing our fuzzy peach fuzz heads. I just found it so funny…we are having head fuzz envy back and forth. These are moments of joy in the journey that make me smile.

So good and bad for today. I went in to get my 4th round of Doxil today. I was mentally prepared for it. For those of you who have never had chemo before, you have to mentally prepare for it. Put on the brave face, suck up the knowledge that you will be poked and prodded and you’ll be looking at other cancer patients who are much worse off than you….and you will wonder when it will be the point you will look like that. You have to mentally prepare to feel sick for a week. I got there and had my labs drawn from my port and tubing inserted into my port to be ready for chemo. I saw the resident and then saw my medical oncologist. I had a list of 7 questions for him. I have to say that I was not looking forward to talking with him this morning because I tend not to be a confrontational person (unless I am going Mama Bear on someone, then watch out). I heard his voice outside my patient room and I could feel my blood pressure spike. I literally closed my eyes and said a quick prayer asking the Holy Spirit to guide my words and keep me calm. Answered prayers. I did pretty good. Rich was able to come in with me since we were discussing scan results. (you know, the scans I had 3 weeks ago but was never called by my doctor? Yes, hence the hope for calmness and proper word choice as I was still pretty upset about that.)

Remember the blisters on my feet (and now some are in between my fingers as well) and the rashes that were so troublesome about a week or so ago? That is called hand/foot syndrome and is a side effect of Doxil toxicity. Everything is on the mend now…the rash is scabbing over and peeling and less sore and I don’t have any openly weeping blisters on my feet right now. So all in all, I was feeling pretty good about it. He asked to see the rash. He saw a small portion on one side and immediately called off the chemo for this week. Evidently I am not such a baby after all. I have grade 3 toxicity. Grade 4 is when you are hospitalized. So the doctor is giving me another week to heal further and then will be decreasing my chemo dosage by 25% to hopefully help with the side effects of the chemo.

We discussed the results of my CT scans in further detail as he gets two pages of results to my 3 bullet phrases published in my online patient chart. Rich knows how uncomfortable I am with confrontation and immediately asked the doctor for me why he did not call and why I had to wait three weeks for results. After hashing things out for a few minutes, we decided that from now on, when I schedule a CT scan, I will either request a Zoom meeting with him two days later or I will schedule it two days prior to an existing appointment. The hospital is so big with so many departments that they don’t really know how to work together sometimes. I was told when I left a month ago from seeing him to call and set up my CT scans. So I did that day. They scheduled me for a week later. The nurse and doctor didn’t realize I don’t have a lot of choice as to when I set up my scans. I get what they give me. At any rate, we have a plan moving forward. He was very reassured with my results. Where I got “stable” in my bullet points, he was able to print out the results for me and show me that my lung mets have both shrunk in the last 3 months and one of the arms growing out of my inoperable pelvic tumor that then attached itself to my pelvic wall was now gone. That is big and I am thankful for this chemo working for me. Now for a week of more healing and onto more fighting next week.

I did ask my doctor to do a ER/PR test on the slides of my tumor. This will tell them if it is reactive to estrogen or progesterone (because they feel it originated in my uterus – even though I had a hysterectomy 5 years ago and the pathology reports at that time were negative. This will help with other treatments if I need them along the way. I had mentioned the testing to my surgeon and to my doctor at the Mayo Clinic and no one had ordered the test done…which is easy to do. If it doesn’t isn’t receptor positive to either estrogen or progesterone, then we know. But if it is positive, that gives us another tool in the tool kit for fighting this disease.

Rich and I left feeling pretty good about the appointment. I was glad he was able to be there and discuss everything in more detail. We have both decided that my doctor is not proactive but more reactive. This may have to do with how long he has been a doctor, I don’t know. Rich and I have vowed to be more vocal about what is going on with my health so it isn’t brushed under the rug until it is so bad that we are treating issues caused by meds he is overdosing me with. (which has now happened 3 times). I am evidently pretty sensitive to medications. Hopefully that means we can beat back this cancer and I can be around a bit longer!

Thanks….thank you to Deb and Todd Banchor for the bouquet of flowers yesterday. The are so pretty and so fragrant! Thanks also to those who constantly check up on me via text or cards…thank you for letting me know that I am in your thoughts and prayers. These days stuck at home (going on 8 months for me) are pretty lonely and they can just get the better of you somedays. Tim has finished his first two grad classes (one of them was research methods and statistics and I am positive he is happy to have that one in his rearview mirror!) I had the privilege of reading his final paper in that class (because it was on a topic I was interested in) and was so impressed by his writing! Good job Tim! Joe has finally finished his testing to get into the fire department. Just waiting on the results of his EMT national registry exam (which was a bear of an exam evidently) Michelle is back at work live this week (and exhausted from it) but happy to be in a somewhat “normal” existence. Lily finished her summer school term and did well in Personal Finance. One less class to take this fall! So happy news all around!

I don’t want this to be about me, but I want to give you a quick update. I am feeling better. I am still having a lot of pain with the rash. Thank you to Mercedes Holmen for the great advice on the blisters. I now have 2nd skin squares I put on the blisters when I walk and it is so much better. She has 3 very talented daughters who are soccer players and have broken in dozens of pairs of soccer cleats. Thank you! I was able to go for my 5 mile walk yesterday and did about half of that today because it was so warm and humid when I went out. The sun went behind some clouds for awhile later this morning and I mowed the front yard. With the vacuuming I need to do today, I will get pretty close to my goal anyhow. Rich has had to do all the mowing so far this summer and with him working full time, it is alot. I wasn’t able to do the back yard as it is a big hill, but I at least was able to get the front yard done. Chalk it up to a Father’s Day gift!

Speaking of Rich, he is such a great dad. The man can fix just about anything and has been on speed dial for our boys as they have moved out on their own and often need advice about things. He kinda pushes all of Lily’s buttons right now, but that kind of defines their relationship. They have been doing a lot together and it warms my heart to know they can lean on each other in the storm, when needed. Rich loves to play Settlers of Catan. We play as a family a couple of times a week…and always at holidays when the boys are home. Lily and I managed to find a new version of the game…about historical America. Lily got it for him for Father’s Day. Rich has a hockey game around noon, then he’s going to work the last part of the day so his manager can enjoy Father’s Day with his young family. That’s the kind of guy he is. It is his weekend off but he’s going to fill in so our manager can be with his family. Rich is just a good guy…that’s why I love him so much. I got him some new grilling stuff to use. I know he has already talked to Tim this morning. Joe has a physical test for entrance into a fire department this morning so we’ll talk to him later.

I would like to say a bit about my own dad now. My dad is originally from Michigan but now lives in the Houston area. His dad was in the Navy and so he moved all over the place growing up but ended up going to high school in Breckenridge, Michigan (tiny spot in the middle of the mitten). He met my mom and they were married while he was still in college at Lake Superior State College in the UP. He joined the Army and my parents were off on the adventure of a lifetime. My dad was a combat engineer with a degree in accounting (which he used as well dispersed throughout his nearly 30 years in the U.S. Army). The army was always moving us around during my childhood. My dad was also an Airborne Ranger and a master jumper. I remember telling my Army National Guard Infantry son that and his eyes bugging out. Joe immediately said, “I didn’t know Grandpa was a badass!” Yep. I remember going to watch him parachute as a kid at Fort Bragg. I also remember him working long hours. Whenever we moved to a new place, he and my mom made sure we found a Missouri Synod Lutheran Church to attend. They were both active in the Church and were great examples to us kids. My parents now live in Cypress, TX, just outside of Houston. They moved there to live close to my brother and his family. My dad has had a series of TIAs (mini strokes) over the last 11 years or so and that has affected his eyesight quite a bit. He cannot see on the left side of either eye. He no longer drives. He has pretty severe memory issues and does not read or write much. He has trouble finding his words and is more likely to quietly listen to conversations than try to participate in them. It is hard to watch from afar as my father, who was always so incredibly smart and outgoing and talkative, slowly quiets himself. He is a homebody like me at this point. He goes on walks around the block a couple of times a day and I walk Tallinn. My parents are coming up to visit in 3 weeks and I am so looking forward to spending a few days with them. I have not seen them since I was diagnosed with cancer. Sometimes you just need to be able to hugs the people you love tight and in person. This COVID 19 virus has made that pretty hard. So if your dad is near by and you can do it, hold them tight and tell them you love them. Time is a tricky thing…and pretty unpredictable to its amount. Speaking of which, time to take a shower and give my dad a call! Happy Father’s Day to all the dads out there! I hope you have a fabulous day!

Kinda had a rough day today. I got up early and went to the grocery store. My rash is at its peak right now and my sides and under arms are just raw. If the pattern holds true from last month, it should start to get better over the next week or two. Right now, it is extremely painful to move. I sleep on my side and to move at all at night makes me feel like my body is on fire for several minutes. The blisters on my toes have taken on a life of their own as well. After walking in the grocery store today in walking sandals, I just could imagine the pain of putting on socks and tennis shoes to go for my normal walk. So for the first time in a very long time, I didn’t walk at all today outside. It made me sad because our heat wave finally broke last night with some really spectacular storms. I was also pretty tired today. Found myself dozing off for about 25 minutes twice today while listening to a spy novel on audiobooks. I did rally to make a new recipe for dinner. French Onion Chicken Macaroni and Cheese. It took me awhile to make it because I hadn’t made it before….and it made enough to feed 8 -10! I now have a container in the fridge and three in the freezer for later on. Here’s to hoping tomorrow is better than today!

I wanted to update everyone on my family. They are my everything, so those of you who know me well know. Joe was released from his guard duty in St. Louis, MO and is now back at home in Kansas City. Praise God. He got home just in time to help move his best friend into his new home in Lee’s Summit. Congratulations Zac and Megan! Joe actually facetimed me last night as they were all in Zac and Megan’s new back yard relaxing after a long day’s work of lifting and moving and lifting again. Joe and Michelle have surrounded themselves with some really great people. As they passed around the phone, each of them said hello to me, asked me how I was, and joked with me. What a blessing. It makes me feel so reassured that they are surrounded by good people who will support them when needed.

Tim is now settled into his new apartment in Fort Collins, Colorado. He drove out early Friday morning. Rich and Lily left Friday afternoon and arrived around 10 p.m. They all have fallen in love with where Tim is now living. His roommates are seniors at CSU and won’t arrive until August, so he’ll have the place to himself for about 2 months. They went to Rocky Mountain National Park to walk around and hike on Saturday. They got to see several moose and elk. There are quite a few geese and ducks in the small stream behind Tim’s apartment building. Rich and Lily are on their way back today. Hopefully we’ll be able to go and visit him for a longer visit soon. Tim has been “interviewing” weightlifting gyms in the area and is going to visit the top one today. Anyone who knows him knows this is his big step into making this town his home. Now he just needs to find a good Jiu Jitsu gym. I am happy for him finding his way in a new place all alone. It isn’t easy. I have done it before, and it took awhile to settle in and find my new inner circle. His boss from Lincoln is going to visit him on Wednesday, so that will be good to start the work he moved there to do in opening the new kickboxing gym. I can’t wait for Rich and Lily to come home and tell me all about Fort Collins.

My Church, St. Gerald in Ralson, has reopened and although they are meeting daily for Mass, I am not able to go yet. I am so very thankful for the live stream video that allows me to worship with them from home. Today, the RCIA candidates were welcomed into full communion with the Catholic Church. This should have happened at the Easter Vigil service. These people, wanting to join the Church and having attended classes for 9 months, have been waiting to be welcomed into the Church. Today they were…with masks and 6 feet apart. Congratulations and welcome!

As for me, all is well. I have 3 large blisters on my feet that are painful but not debilitating. I sometimes start out our early morning walk with a bit of a limp as they are sore, but by the time I am a block or two away, the pain has eased. The raging rash under my arms is back and in the painful stage…but at least I know it won’t last too long. It was really only painful and raw for about a week or week and a half last time, so I can handle it. My hands are very wrinkly….as my kids when they were little and in the pool or tub too long, would get “raisin fingers”. I drink at least 2 liters of water each day, so I am staying hydrated, but my hands are now very wrinkly. It doesn’t hurt…just a little weird and my phone doesn’t want to recognize my fingerprint readily, which becomes a bit frustrating as it is how I unlock my phone quickly. Again, just a minor inconvenience. Otherwise, I am feeling really good. I am able to do all the housework, some yard work, walk Tallinn about 5 miles daily, and keep up with work on the computer. I am reorganizing my kitchen cabinets…as I am going stir crazy and organizing things puts me in my comfort zone. Envision labeled containers with all my spices….and all my baking goods. Ah, things that make me happy.