I have met several women…grieving moms…since our Joe died 4 years ago. It is easier to be with them because they understand the profound loss of losing a child. There is no need for the “I’m fine” mask to make them feel more comfortable. There is no preamble about the loss. Many of these ladies have become part of my tribe. I can ugly cry in front of them without being embarrassed and that is a huge thing. Huge. One of my fellow grieving mothers talked about this man named Dan in New England who creates these surfboards. He lost his dad and wanted to honor his memory by giving him one last ride on a wave. In 2022, the idea grew from there to honor other people’s loved ones. Your loved ones’ names are written on the surf boards and are taken to different parts of the world to catch ‘one last wave.’ The “One Last Wave Project” mission is “to use the healing power of the ocean to help grieving families, etching loved ones names onto hand-crafted surfboards and paddling them into the ocean to catch a symboliclast wave.” It doesn’t cost anything to do this, but Dan does sell memorabilia for each board and generic company shirts, etc. Dan goes through all the emails personally and decides if he’ll put your loved one’s name on a board. I emailed him and told him about my Joe. I told him that Joe learned to surf as a young teenager in Norway of all places, while I stood on the beach in a parka taking photos of him in the snow. I told him that Joe would come out of the North Sea in his heavy wet suit with blue lips from the cold…but that he absolutely loved surfing. I told Dan this would be such a big honor for us to have his name on one of his surf boards. Dan sent me a reply back within a few days and said our Joe would have his name written on Board #11, along with my friend’s son and daughter (the one who told me about this in the first place), whom she also lost in a tragic car accident two months after my Joe died. She also lost a Joe…and an Ali. Our children will ride the waves together on Board #11 when it is ready. I will post more when I get that information. Board #10 just was finished and had 2606 names on it…handwritten. The board will launch for its inaugural ride on May 9th at 0900 at Bluff Ave at Palos Verdes Estates, California. Dan has even taken boards to other countries to ride them there. The families are invited to go watch but it is always recorded in case they can’t make it. Check out his website: http://www.onelastwaveproject.com He is also on Facebook under the same name. It is a powerful and wonderful ministry he is doing. Our Joe would have loved this idea. He loved surfing and being in the ocean. This felt really right for us. I will update you when Board #11 is ready for launch and tell you where and when. It will be a few months at least. However, I look forward to learning and sharing all about it! If you look at the bottom photo from Dan’s website, those are all the names on Board #10. Check out the website. There are several videos explaining how things work. We’ll keep you updated!

This morning I went in to the oncology radiology department again. I was first placed in an exam room where I met the Nurse Practitioner. She was super nice and told me I would be meeting with her and the doctor every Wednesday after my treatment that day. She said her office is right off the treatment room and to pop my head in and let her know if I needed anything in between those weekly visits. She went over a THREE page document of a guide to pelvic radiation therapy, much of it being side effects which were very common and how to deal with them. It won’t be a picnic or a walk in the park, but compared to the life-altering changes I would get with the surgical or chemo option, I am willing to give it a go and pray it kills that tumor growth or at least stuns it for awhile. If extra radiation hits the larger tumors around it, all the better.

I was then taken to a dressing room area like at Old Navy or Kohl’s…I was given a pair of scrub shorts and a key. I locked up my purse, shoes, pants, and jacket in the locker in the dressing room and padded in my socked feet to the waiting room in the back. There was another man sitting there in the same scrub shorts. We joked about our exclusive club clothing for a few minutes before I was called back. The two radiation oncology techs had me lie down on a hard table covered with a long sheet. I had a square spongy-like block to place my head on and they placed a squishy but somewhat firm block of bean bag beans under my knees and feet. They then extracted the air from that bag of beans under my feet and it hardened to a mold of my legs from my knees down. That mold is mine for the next month or so, until my radiation treatments are over. They had a bunch of them in large vertical wooden slats in the room, where they are stored until they are no longer needed. These are vacuum splints, and we use them often in EMS care in the prehospital setting. We have ones for legs, arms, and for the entire body, which is much better to use than a backboard nowadays. So I was familiar with what they were doing. They have a machine that sucks the air out in a second or two. We have to use a hand pump that takes calories and manpower to pump over and over again. I had mentioned to the girls doing my simulation today that I already had some tattoos from when I did this 6 1/2 years ago. I never got to the radiation part at that time; they decided at the last minute to do chemo instead. They were able to find the ones easily on the sides of my hips. (I told them if they could find them, great. I was not a contortionist and couldn’t find them myself.) They did find them right away and said they could use them. Yay! That was two less tattoos that I needed today. They couldn’t find the other one, but I was quick to remind them last time I was placed on my stomach for simulation versus on my back like today. The other tattoo was on my lower back. Now I have a new one on my lower stomach. Honestly, the skin over my lower abdomen doesn’t have a ton of feeling in the skin due to the three surgeries I had there in the past. Just simple nerve damage on the skin after multiple incisions. However, I did feel that needle in my stomach today for the third tattoo. It wasn’t bad, but it just isn’t a place you are used to having a needle at a 90 degree angle jammed in there.

One thing that was really nice today was that they allowed me to stay mostly dressed. As I said, I just had to take off my jeans and put some scrub shorts on instead. I was covered with a warmed blanket and asked to pull my shorts and underwear down past my hips under the blanket. When I did this in Omaha, 6 1/2 years ago, I was stripped down to only my socks and they took out cameras to take multiple photos of me, naked, lying on a hard table. It was humiliating. I was expecting that today and that was not at all what happened. I was really pleasantly surprised. I only had to get one tattoo and I kept my dignity. I did have to go in with a full bladder and they ran the CT scan with my bladder full and then let me get up and use the bathroom and repeated everything with an empty bladder. They will let me know which one I will have to try to emulate once they schedule me. So I am done with all the things I need to do! It will most likely be around Monday, May 11th before I can start my treatments (called fractions). I will be doing 15 over 3 weeks – so Monday thru Friday for three weeks. It takes me about 30 minutes to get to the facility and it will take 15-30 minutes for the visit and then another 30 minutes drive home. Not too bad. For now, the radiation professionals will decide all the directions, dosages and whatever else goes into the formula of getting my treatment ready. It will take a week or two.

On my way home today I stopped to take some pictures of the marshy area near us and the reflections of the mountains. There are a lot of bird in that area and I looked up and saw some very unique birds. I told Rich they looked like black birds with yellow heads. I looked them up. They are yellow-headed blackbirds. Go figure!

I always need to start off with a smile…I had to pull down a dirt road to take this picture just a few miles from my house on the way to meet the radiologist today. There were lots of low-lying clouds by the mountains but there was a ray of sunlight trying so hard to break through. These are Joe signs for me…bright rays of sunlight coming through clouds. It is hard to see, but there was a solid ray of sun peeking through and shining on the snowy mountain.

I met with my oncology radiologist today. He did his residency at the Mayo Clinic and worked with my sarcoma specialist 20 years ago. We both agreed he is a great guy, so that was a nice start to the meeting. The local doctor agreed with what the radiologist at the Mayo Clinic said last week, so we are going forward! I actually have an appointment tomorrow morning to get mapped/simulated. They asked me to have a full bladder at first so they could do the mapping and viewing with the tumor raised up more, and then I willed be asked to pee and then they will do the same with an empty bladder to see how my vital organs in the area lie whether my bladder is full or empty. We will have to replicate that every time I come in, so everything is the same every time. Tomorrow’s appointment will involve tattooing (if my others are not in the right place anymore). I was marked and went through this process 6 1/2 years ago but at the last minute they decided to do chemo instead. Tomorrow’s appointment should take 60-90 minutes. They will take about a week or so to create a plan and then hopefully I will start going to daily treatments the week of May 11th. Everyone was very nice and allowed for my many questions. I will meet with the doctor or a nurse practitioner every Wednesday after my treatment to make sure my symptoms are being dealt with. The doctor was excited about my trip to Africa and stated I should be less tired by that time and may still have bowel irritability issues, but that they would help me medication-wise to deal with that. So onward we go! To tomorrow and getting a schedule!

Hi folks. Thank you for not pestering me about my whole cancer situation the last week or so. I just didn’t have any information and picking at it over and over again with each well-wisher was getting to be overwhelming. This may be kind of a long post, but I have always been very straight forward and transparent with those who care about me. So far, only Tim has really been told of the extent of what was said at the Mayo Clinic because I felt he could understand a lot of it. But I am going to rewind a bit because I want to make you smile a bit as well.

Before we left Montana, the weather was SO WARM! It was in the mid-70’s and then hit 80 the day we left. We took Tallinn for some longer walks and he loved it! Put for the half mile trek to the mailbox and back, he has to carry a stick with him: the bigger, the better. It is all a lot of fun until he whacks you in the back of the calves with it unexpectedly.

We flew out of Kalispell to head to the Mayo Clinic in Rochester, Minnesota. Unfortunately, we did not have a direct route. We flew out of Kalispell at 6:05 am and flew WEST to Seattle. We were chasing the sunrise the entire time (or maybe it was chasing us). Either way, beautiful visions out of my window on the way to Seattle. We then flew back over OUR HOUSE from Seattle to Minneapolis. We rented a car and drove an hour to Rochester. Coming home late last night, we did that all in reverse. We got back to our house around 1 am this morning. It had snowed and the temp was 29 degrees. It is almost noon here now and it is a balmy 35 degrees. It is above freezing, so there’s that. Here are some of the photos from the sunrise for an hour trip to Seattle on Tuesday….

The Tuesday we flew out was the feast day of St. Anselm. I don’t know a whole lot about him, but one of his prayers is my favorite. I pray it weekly. It seemed like a message from God as I was traveling that day toward a lot of hard things to face. I will share the St. Anselm Prayer with you:

O Lord, my god, teach my heart this day where and how to see You, where and how to find You. You have made me and remade me, and You have bestowed on me all the good things I possess, and still I do not know You. I have not yet done that for which I was made. Teach me to seek You, for I cannot seek You unless You teach me, or find You unless You show Yourself to me. Let me seek You in my desires; let me desire You in my seeking. Let me find You by loving You; let me LOVE You when I find You. ~ Amen.

The Tuesday we arrived in Rochester, I got to meet up with a friend I hadn’t seen in a pretty long time. Ruth and I did kickboxing classes together. I am still amazed at how many good friends came out of that endeavor. It isn’t like we get the chance to talk much when we were working out. Ruth’s parents and brother live in Rochester…and she was kind enough to extend her stay a day to have dinner with us. It was so good to catch up. As we were leaving, she asked to pray over me, which was a huge comfort. That just isn’t really done at my very conservative Church here in Montana. It meant a lot to me.

Being in Rochester is interesting. EVERYTHING is Mayo Clinic related it seems. There are these 10 story buildings with all sorts of specialties. They are all connected underground by a walkway. I have been going to the Mayo Clinic in Rochester off and on for 6 years. They are constantly building more buildings and doing construction. I have never been there when there wasn’t heavy construction going on. I feel like everyone we passed on the street walking around were either people who worked at the Mayo Clinic in some capacity or were there as patients. The patients…it is sobering every time we go there. So many people coming from all over the world to be treated because they are so very sick and they need the highest level of care. There is a Mayo medical school and then the University of Minnesota – Rochester is clumped into the city nearby as well. There are a lot of parking structures, but I have no idea who parks there. They are always full and we always stay in a hotel close enough to walk to where we need to be in 10-15 minutes. The staff working at the Mayo Clinic are all bussed in from much further out. We went to the movies on Wednesday afternoon, and it was a filled with cars for the Mayo Clinic employees and they are bussed from there. That was a 10-minute drive from the Mayo Clinic and only one of many huge parking places they have with bus transports.

Wednesday morning, we had a surgery consult with one of the oncology surgeons at the Mayo Clinic. First off, I was under the impression that the list of suggestions from the tumor board was what my oncology doctor wanted to do…all of it. That was not the case at all. I was getting an opinion about the surgical option and then the radiation option. My oncologist had already covered the chemo option – which would be trabectadin (Yondelis). About 1/3 the way through the appointment, I realized I wasn’t getting radiation then surgery, putting me out of pocket for probably 6 months. I was getting the details of what it would look like if I chose the surgery route. The surgeon was very nice, and she had studied at one point at Stanford, where Tim used to work. She was very clear about how high risk this surgery would be. There would be at least four different specialty surgical teams to work on the different areas of my pelvis. There is only one tumor which is showing growth right now. Unfortunately, it is adhered to a much larger tumor in my pelvis which is stable. They would have to try and remove all of it. Because the tumors are vascularized (meaning it has been smart enough to create its own blood supply), there are a lot of risks. Here are some of the issues: I would have to have a serious revision of my vaginal cuff, most likely taking away my ability to be sexually active again. I would most likely lose my left ureter and part of my bladder. The larger tumor skirts around some of the biggest blood vessels in the body, and they may have to be clamped, cut, then reattached. The possibility of having to take out more bowel is quite high, with the chance of having a temporary ileostomy (where you poop in a bag from your abdomen) was also high. The nerves along my left pelvis would be involved and although she was pretty sure I would still be able to walk, I would not have feeling down part of my leg. Basically, I would not come out of surgery the same person I went in. She felt it was a pretty drastic measure considering how active I am. The surgeon also stated that the normal reactions that takes place in the body 1-2 weeks post surgery could cause any cancer in my body to start growing. All of that to just have to go back to another treatment. Honestly, she didn’t sound real thrilled about trying this. She didn’t need to convince me. I wasn’t on board with it either. She did state that doing radiation ahead of the surgery may not be optimal because of the ability to heal would be greatly increased. So we left that appointment a little shell shocked. Rich, especially. I had a feeling it was going to be really extensive. We walked to a nearby cafe for lunch and sat and talked about it. This will be our last choice. It will not allow me to have a life of what I want. With the blood supply to the tumors, it would even risk my life.

We spent the afternoon knowing we had ruled out one option and hoping that our appointment Thursday morning would be more viable…otherwise, it would be back to traditional chemo again. So those two options were on the table. We found a park in Rochester to spend a few hours at before going to see Project Hail Mary at the movie theatre. We had a great time walking around the park…we saw 6 cardinals but heard many, many more. I keep a journal of letters to my Joe, and I had told him the night before that since we were back in a place where there were cardinals, it would be great if I could see one. The next day we saw 6! It was what my soul needed at that moment.

The next morning, Thursday (yesterday) – it seems like it was longer ago than it was as so much has been happening – I met with the oncology radiologist at the Mayo Clinic. I met first with two physician’s assistants and a student physician assistant (it is a teaching hospital after all). They were all very nice and the lead PA was very knowledgeable and answered a lot of questions I had prepared for the team ahead of time. One of the PA’s was from Kalispell, Montana! (I took this as a good sign). They spent nearly an hour with Rich and me explaining the different kinds of radiation, what side effects I would have having radiation in my pelvis. They mentioned I have what is considered “oligoprogression”, meaning I have only a small portion of my tumors growing (for me – one) and the rest are stable. It is best to try and get that one taken care of rather than treating all of my tumors and risk upsetting the apple cart. The side effects won’t be great, but they won’t be life altering either, at least not long term. The radiation treatments are done every weekday and typically for 5 weeks. I mentioned this little trip I have planned to Africa on June 17th through July 4th. (How cool that I get to arrive in the United States on her 250th birthday!) They had preemptively made an appointment for my simulation (getting mapped for treatment) at the Mayo Clinic the next day (today) with the idea I would be coming back in a week to stay for 5 weeks of treatment. HOWEVER, when the radiologist came in and spoke with me after being briefed by the team of PAs, she had another plan. She thought I was healthy and active enough to bump up the dose and only be treated for 3 weeks, giving me time to recover a bit before my trip to Africa. The radiation continues to work for a few weeks after the treatments are done. She recommended photon radiation therapy (IMRT) for 15 fractions (3 weeks of 5 days a week – a fraction meeting a dose/appt). Guess what? I have the ability to get it done in Kalispell at the hospital there! This was great news. She said that if the radiation overshot the tumor they were trying to hit (which it does in photon radiation), it would land in that big tumor, which is perfectly fine, rather than hitting other structures. Will it be a walk in the park? No. Is it worth a try? We think so. Leiomyosarcoma (LMS) is not always reactive to radiation, but we are going to give it a try. If it doesn’t work, we can go to systemic chemo. And as I said, surgery is in my back pocket, but only as a last resort. We left the Mayo Clinic with the weight lifted off my shoulders. I like to have a plan.

I called my local sarcoma nurse navigator on our drive to the airport in Minneapolis. She helped get the ball rolling. We flew home and walked in our door around 1 a.m. this morning. By 10 a.m., I had already gotten a call from the radiology center in Kalispell with an appointment for Tuesday, April 28th at 10:45. I will be meeting with a radiologist to see if he agrees with the way forward. I looked him up….he has lived in the area for 10 years and he did his residency at the Mayo Clinic! (I think this may be a God thing!) Anyhow, going to get going next week and hopefully start treatment soon. I just hope he agrees to what the Mayo Clinic oncology teams says. The person I talked to on the phone this morning getting information from me was really nice and I am hoping all the puzzle pieces are falling into place. I think I have done all the things I can do at this point. So in conclusion – going to try to do a higher dose of radiation for 3 weeks….recover….go to Africa to commune with the elephants and other wild beasts for two weeks, come back and re screen to see if the radiation worked. Then we’ll move on from there. Until then, and through the radiation, I will continue to be on the medical regimen I have been on for the last 5 years. I will be adding the radiation on top of what I am already doing (as the rest of the tumors seem to be holding stable.

Thanks everyone for your many prayers. I am feeling so much less overwhelmed in the last 24 hours, which is nice. I have even gone on a medical call for the fire department already. It is good to be home and I am so happy I can be treated here. Being at home to deal with all the ick sounds way better than being in the Hope House in Rochester for 5+ weeks.

Yesterday was a long day. It started with a CPR call before 6 a.m. It continued to cleaning out the bays at the North Hall for a memorial for a former Bad Rock volunteer firefighter. We went home and changed and came back in our dress uniforms in support of the family.

In the late afternoon/early evening, we went to Whitefish for dinner and managed to see a magpie. There are not any cardinals where we live. People always say when a cardinal appears, a loved one is near. We had a ton of cardinals in Omaha. Here…none. So we joked about trying to find another bird to use instead. We see a lot of turkeys…which was a hysterical because I used to call my Joe a turkey a lot when he was little. Joe was my turkey and Tim was my ham. Either way, they kept life lively. Anyhow, Michelle had mentioned to me once that when she and Joe were in Colorado, the day before he died, she saw a magpie for the first time. Joe told her about them. They can be kind of annoying birds…I know they were in Norway around ISS where the kids went to school. However, they are pretty birds. That bird seemed more appropriate than a turkey. We saw a big one right in front of us when walking down the street in Whitefish. It had been a harder day, and my spirit was kind of lagging by that point. I think it was Joe trying to say he saw us and was there. Some people may say that is a load of hooey, but those folks probably haven’t lost a kid and will take signs when they see them. I also wanted to show you a view from downtown Whitefish, the town next to us. It is double the size of our nearest small town…Whitefish’s population is about 9500. It kind of looks like it belongs in a Hallmark movie, doesn’t it? You should see it during Christmas time…it is magical. There are lighted stars strung across the road with the snow-covered mountains in the background. It is pretty cool to see. Speaking of snow, we had about 4 inches on Thursday (surprise!) and today it is nearly 60. Tomorrow should be even warmer. Spring in the mountains and the valleys in between; you never know what to expect!

We leave for Rochester, MN and the Mayo Clinic on Tuesday very early. I have consults with a surgeon on Wednesday, and a consult with an oncology radiologist on Thursday morning. We’ll fly back and get home late on Thursday. I hope to have a better understanding of what the plan is and putting it into place. I will post on this blog when I have more news. It is a lot for me to wrap my head around mentally – what I am guessing my next several months will look like physically for me. As much as I know how much you all care, please let me talk to my kids and family first and then I will post here. It is so draining to have to go over everything over and over again every time someone sends a text or email. I am trying to get a place where everyone can keep up with everything that is not social media – so please check here. I will post as soon as I know anything and have talked to my kids first.

My mom, Karen (Ancel) Neitzke, turned 80 years old on April 13th. I was able to be down in Cypress, Texas with her to help her celebrate. I had been sneakily obtaining birthday cards from friends and relatives for a couple of months. My goal was to have 80 cards for her to open on her 80th birthday. Well, everyone really came through! I had about 120 birthday cards for her! Most were from people she has known from all facets of her life. She had letters from childhood friends, high school friends, friends from her time moving around with my dad in the army…friends from just all over the place. Then my friends also joined in and even though they didn’t know her, showed up and sent her birthday wishes from all over the globe. Thank you for all the folks who helped with this. I was overwhelmed at how many cards I got to take to Texas with me! My suitcase was a lot lighter on the way home! My mom’s handbell choir also had an impromptu birthday party for her at their handbell practice the night of her birthday.

I was able to see my dad as well while I was there. He is not really verbal anymore but will sometimes say a phrase that is appropriate for the situation and it makes me smile. I got to hold his hand while my mom fed him his lunches and dinners while I was there. I even got a kiss on the cheek from him several times. He seems to be on a plateau right now and I will take it. He thought it was hilarious that my mom was 80 and she told him he was married to an old lady now. He laughed and laughed.

It was also great to see my brother and his family. I always have such a great time with them. Their 3 year old daughter is a blast to spend time with….she is quite a character! Their teenage son is big into basketball so we always have something to chat about. Craig and Mayra were champions driving me to and from the airport, which I so appreciated.

Here are some of the photos I took from my week in Houston:

This is my dad getting a double dose of love…holding my mom’s hand and mine.

If you have known me throughout this journey with Leiomyosarcoma (LMS), you know it is a very rare form of aggressive cancer. Every single LMS patient is different. It is a hard cancer to treat but there are big hopes for the future in individualized immunotherapy. New things are coming out all the time, not just for LMS but all forms of cancer. When I was first diagnosed, there was a 17% chance I would still be alive in 5 years. Thankfully, I have been blessed to have treatments that have held things stable for over 6 years. I have had 3 major abdominal surgeries, two forms of chemo for 15 months, and have been on oral meds with occasional IV treatments for the last 5 years. I have been lucky. Actually, I have been blessed. I have walked into offices to meet oncologists locally here that are amazed. They have said my chart and scans don’t seem to match the person they are meeting. Then I tell them I am volunteering with my local fire department as a firefighter and EMT and I watch their eyes bug out. I tell them I travel the world and they continue to be amazed. So I have been blessed. I am, however, back in a spot where I need to be fighting a harder battle right now. I have several tumors but one is being a stinker and growing again. It needs to be taken care of in some fashion.

I have been followed by a sarcoma specialist (the head honcho, actually) at the Mayo Clinic in Rochester, Minnesota for 5 years now. I really like him. He is a kind person and yet he lays it all out without sugarcoating it, which I appreciate. I had an appointment with him early April 1st. He stated we needed to move forward to stop this tumor growth. He presented my case in front of the Mayo Clinic tumor board last night. These are all the oncology surgeons, radiologists, medical oncologists, etc. They discussed my case and think I should have radiation first, surgery, and possible radiation while I am being operated on. I have a consult with a surgeon on April 22nd and a consult with a radiologist on April 23rd, both in person at the Mayo Clinic. I am leery about having radiation locally. I want to see how long they want the radiation to go on…I may just do it all in Minnesota. I don’t know any details at all, so please don’t ask. I know that this tumor, along with my other tumors in my pelvis were not removed 6.5 years ago because they were highly vascularized….the tumors had created their own blood supply and the surgeon felt I would either bleed out on the table or end up in the ICU for 2 months. Neither were good choices, so he left them. I actually have small tattoos on my hips and back for radiation I never ended up getting in Omaha. They found out I was stage IV and moved to chemo instead. The goal with radiation right now is to shrink the tumor(s) (I don’t know if they will pinpoint just the one or go for the other ones as well) and decrease the blood supply to them. I have to talk to the radiologist at the Mayo Clinic to see if she feels my local hospital can handle this or not. If not, I will do the radiation there. I also don’t know how long we will have to wait between radiation and surgery. I am fair skinned and radiation will burn my skin. If my skin breaks down at the surgical site, will they do surgery? What about my bladder? It is precariously right in the middle of things. I don’t want to end up having no bladder control for the rest of my life because of poor radiological treatment. So there are a lot of things in play right now. Not to mention….June 17th I leave for Africa. If that ends up being my last big trip, I want to take it. My goal is to have treatment so I can live my life. If I can do this afterwards, great. If I need to do radiation first and surgery after the trip, great. I just need a plan and I don’t have all the information yet.

Rich and I will fly to Minnesota on April 21st and fly back on April 23rd. Hopefully we will have all the answers at that point. Until then, I have a couple of blood tests Tuesday and Wednesday, an IV treatment on Wednesday, and a meeting with my oncology nurse practitioner, where I will fill her in on what I know so far. Then I hop on an airplane to Houston to see most of my side of my family for 6 days. I will celebrate my mom’s 80th birthday, spend time with my dad in his memory care facility, and spend time with my brother, his wife , and my niece and nephew. I will have a good time and not let cancer be hanging over my head. That will be saved for my trip to Mayo. I know there are a lot of folks in my corner who have reached out to me. Thank you. Please know that it is best for my mental health to just deal with this when I have to. If the next couple of weeks are my last normal ones for awhile, I want to enjoy them. I kinda had this problem when I was first diagnosed with cancer…everyone wanted to talk about it. It rules my life, and I sometimes may just say, “this is a cancer free zone right now” and not talk about it. Believe me, it is on my mind all the time. I think I slept 4 hours last night and even then, dreamed about it. I need to set it aside right now until I have to deal with it. I do welcome healing prayers though. Thank you.

We all know that, right? That some people are just a blessing in your life…and for me, it doesn’t tend to be the people closest to me. They tend to be ancillary people in my life who pleasantly surprise me. Honestly, I could probably write about this weekly – for sure monthly. Today, however, was something super special.

My Joe’s sister-in-law, Laura, sent me a text this afternoon as she was passing through Colorado with her family. They stopped at the roadside monument where our Joe was killed a little over four years ago in a car accident in white out conditions. She and her husband had stopped there several months ago and realized that it needed a little sprucing up. This time they came prepared and replaced American flags, etc. It is hard, because we don’t live close at all to the site, and neither do his friends. His brothers with the Olathe Fire Department set up the site within days of his death. The site has been there since, with whomever passing by, fixing it up as much as they could. Thank you, Laura and Kyle, for taking the time to stop and tidy up this spot memorializing our son. Your showing of love for your brother-in-law, humbles us. It means more than we can ever express.

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

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

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

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

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

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

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