December 26, 2023 - The Final Post

Hi everyone,

We (Val’s family) wanted to post an update, per Val’s final wishes. She had hoped to have a final post written up, but was unable to do so... It is with heavy hearts that we have to tell you that God has called her to heaven.

The last couple weeks, as she had mentioned in her prior blog, were full of difficult conversations. She did get to spend the rest of her days doing some of her favorite things, such as watching football / hockey games and spending time in the comfort of her home with those she holds dear. We know she appreciated, cared, and loved those in her life, both near and far.

Val with her nephew Lucca

Val was an amazing, inspirational, and selfless person. Many of you were fortunate enough to experience that firsthand. She made her mark on this world, that is for sure.

We want to thank all of you for the continued prayers, support, and love you have shown Val, as well as all of us, throughout the last ten years of this inspirational, though heartbreaking, journey that she was on.

She began this blog in hopes to help others with her transparency throughout her battle with cancer, and we believe that was accomplished.

Now a message to you, Val - We’re happy you are no longer suffering and finally at peace. 

Your kids and pups will always be taken care of, we promise you that.

Thank you for inspiring us and showing us how to put things into perspective as we navigate our own lives. You showed us what really matters and to not take things for granted. You taught us how to persevere with grace and optimism when things are tough.

You were an Angel among us... Now you have your wings.  

We love you and we will miss you, always and forever.

🤍🤍🤍

Dec 14, 2023. Things are getting worse

Hi everyone. My last update wasn’t very long ago but I feel that there has been a lot of info since then. Some of this I wrote a few weeks ago, and some was today. You’ll see as you read! 

I’m still having some issues with my eye since having the radiation but I do feel it’s happening less often than it was before. So that’s a good sign. 

I was forced into getting a new insurance in October and we have had issues with getting Mayo to accept it. My insurance guy has others on the same insurance and they go to Mayo, we just need to get a referral from here, etc. We did all of that but now the insurance is taking a long time to get back to us. Because of all this, I had to cancel my visit to Mayo at the end of October. I had scans done here about a month ago and it sounds like both areas, my lungs and head have grown. They were also sending the scans to Mayo for them to look at but so far I haven’t heard anything. 

My breathing has gradually gotten worse, my body hurts and gets tired so easily.. I was really having a hard time taking the chemo med. I couldn’t bring myself to take a med that was going to add more side effects to what I already had going on. I was starting to feel miserable without being on any meds! So I decided to be done with them. I’ve tried so many different meds over the years, and none of them have worked for me. The trial med I was on definitely knocked me down and I never recovered from that. I feel that I’m at the point where these meds we try are going to do more harm than good for me. There is always the ‘what if’ this was the med. But my lungs are so full of cancer and my breathing is getting so bad- even if a med stopped or slowed the growth, I wouldn’t feel any better than I do now. I’d need a miracle med to shrink the cancer a lot. And in 9 yrs of hoping and praying, we never found that. I’m tired…I’m burnt out. 10 years ago this month is when I had my first symptom. Ten. Years. 

I have an appointment with my oncology department here tomorrow and we are going to work on getting oxygen for me. Maybe being on it at night will help me feel decent during the day. Or maybe I need it during the day too. Idk. I know I can’t work the amount I was anymore... I have been telling my clients that they should start thinking about a new stylist.. breaks my heart to do that as my clients have been so so great. But I know they understand..and a lot are surprised I’ve worked as long as I have… 

My cousins had been trying to plan a girls trip for us in May, for my 40th(!!) birthday. I was all for it and looking forward to helping plan and get everyone on board. But, a week or two after we started talking about it is when my breathing became harder….then I was having anxiety thinking about everyone booking these flights and an Airbnb for 6 months out. 6 months started to feel far away with the way I was feeling. So we decided to put it on hold for now and decide if we do something sooner or closer, etc. 

In the mean time, my brothers surprised me with a trip to Vegas! (Actually I think Alyssa had a lot to do with that😉) I love Vegas and always thought it’d be fun to go there with my brothers. It’s booked for December 14th! Even if I’m not feeling well, we can just go with the flow. If I need to relax a lot, I will. But it’ll be nice to eat good food, watch a show, people watch, etc.. this could possibly be my last trip, so I need to take it all in. 

Last night I wrote the previous part of this blog and today I am adding to it as I sit in the hospital waiting to get set up on ‘at home’ oxygen. My numbers were too low and my doctor didn’t feel safe letting me go home on my own without it. My numbers were so low that most people would be on the ground. But being that it was a gradual decline, my body was able to handle it. I am to be on this 24/7… and my doctor said I should be done working too. They are impressed I made it as long as I did, but now it’s time to stay home and take care of myself.. I knew giving up work was going to be a hard decision for me to do, and this is what I needed to make that happen. I had bloodwork at 9:30am today and met w my Doc at 10:30. After that we started getting the ball rolling to get me hooked up with the ‘at home’ oxygen. It’s a company based out of Marquette but they have an office here. Between insurance, and talking with the company, it was taking a while to get it sorted out. It was almost 4:00 when they finally got it all figured out and turns out the guy delivering it, went home for the day!!😡 So now I sit here, in the ER, hopefully getting admitted to a room until morning when the guy can deliver the oxygen. So frustrating. The last thing I want is to be sitting in the ER and asked a million questions. I’ve done this so many times and I’m so sick of it.. I did eventually get a room and asked a million more questions. The next day around 1:30 I was able to leave the hospital because the oxygen was finally set up.

 That was 2 weeks ago and since then I’ve been at home trying to relax. I’ve left a few times to run Shay to school or pick her up from somewhere but that’s it. Tuesday was my doctors appt and the first time I’d be going into a building with the oxygen. I had my Mom help, because it’s kind of heavy getting the O2 out of the car. We were gone about an hour total but man was I exhausted when we got home. I get tired easily, I can’t stand or walk for too long without feeling yucky. Like I might pass-out, or can’t get a deep breath.. I spend a lot of time sitting or laying but eventually I get sore doing that! So it’s a lot of changing positions. Standing for a little while, then sitting again, then maybe laying down. Lots of rotating.

 This Thursday (today) is when Vegas is supposed to happen… I was so torn on what to do..I went back and forth so many times! Unless I had bought this specific O2 machine, traveling would be tricky. My energy level is so low, could I even walk the airport? What about the hall to our room at the hotel? Let alone go do anything fun? But then I’d think- this is the last trip you’ll be taking. Just do it. Because at this point, things are only going to get worse.. In the end, I decide on not going. I was sad and bummed for my brothers..and I was really looking forward to it. I keep thinking about their big smiles as they were surprising me with going. 😞 But my body can not do it..

It’s just crazy how fast things can change.. Montana was my last trip, I’m lucky it was a great time with my family! I went to the Packers game w Maren a couple weeks ago, so thankful I did that! Had a dinner out with some friends not that long ago.. 

Right now, I don’t feel comfortable going out and doing things. I’d rather be in the comfort of my own home.. Plus the O2 tanks I have right now, are big and only last about 1.5 hours for me.. and it’s a production to bring into anywhere. A lot of people have been asking how I’m doing, I know most hoped the O2 would give me more energy but unfortunately it isn’t.. it’s just keeping me comfortable breathing for now.. there is no ‘getting better’ for me. And I’ve come to terms with that. 

I don’t know.. I guess I don’t really know what to say… I do know the end is close for me. I don’t want to say I’m at peace with it, because that’s not completely true. (I’m mad and sad and frustrated and want to kick and scream.) But, I am tired. So so tired. I’ve been suffering in many ways for a long time and I’m okay with all of that coming to an end..seeing my body deteriorate and start to fail me, is scary too. I look so sickly and don’t recognize myself anymore. I feel like this time I have now is to set plans, get things figured out, have tough conversations with my kids and family, etc… and that way, I can at least put my mind at ease. 

I'm hoping to give you all another update in a few weeks.🤍

THE PAST FEW MONTHS AND RADIATION - AUGUST 2023

Hi everyone! I’ve really slacked at keeping up on my blog.. mainly because I haven’t had any exciting news to tell. But here is an update for you! When I went back in January for the final scan while being on the trial med, it showed no improvement so I was going to be done with that. It was a huge relief because I was so unhealthy and feeling horrible on it. I couldn’t wait to start gaining weight and growing hair again! Our next step was to start an IV chemo that I could have done at our hospital here, one day every month. I had to get a port put in to receive this chemo, which I have had a port before, but that was nine years ago and we had it removed because it was no longer needed. By the time we got all the paperwork figured out, it was about six weeks after ending the trial that I got started on this.

I was worried about being on an IV chemo because the last time it was very hard on me and I did nothing but sleep that first week after receiving it to help pass the time of feeling so horrible. They said this chemo is easy on some people and others have side effects from it. So until we tried it, I wouldn’t know how it would be for me. I was there early one morning to get my port placed and then 2 days later I started the chemo. The first day everything went well, I had a few side effects as I got the med, like low blood pressure, fast heart rate, some shooting pain in my back; my body seemed to be fighting it. We had to slow down the speed that the chemo entered my body. So what should have been a few hour day, ended up being 8 hours! I didn’t mind being there though, I was in a comfy chair w a warm blanket and they order lunch for you. I had a book and my phone to keep me busy. I also napped if I could but every 20 minutes we had to take my blood pressure!

I was prepared to start feeling yucky the next day but the only thing I noticed was I was a bit more tired. And that continued the rest of the week but other than that, I had no side effects! What a relief! It felt like a break to be on this medication! We were trying something to slow the cancer but I didn’t have a pill to take daily or extra annoying side effects! 3 months after being on this med, I was back at Mayo to see if we had any positive news. I was praying it was because I had no issues with staying on this chemo for a long time! Unfortunatelyyyy, the spots in my lungs were still growing. My oncologist even said looking at my scans and then looking at me, told two different stories. The scan didn’t look good as the spots in my lungs are getting larger and taking over my lungs. But then looking at me, and listening to my lungs, you would never guess the scans looked like that. Although I was starting to feel more side effects from them growing. I got a cough in the beginning of January and it never went away. I still have it. I run out of breath very easy now. And I am very tired every day. The doc said we will give it two more months and then depending on the scans, we will either continue this chemo or be done with it.

During this time, we found out my dog Nala had bone cancer. It was in her back right leg, on her inner thigh near her knee. I guess bone cancer can be very painful and they recommended amputating her leg. I was in shock!! By amputating, it gets rid of the pain and gives her more time with us. Usually by the time you find the bone cancer, little cells are in the body and eventually get to the lungs. There was an option for chemo but it would have been over the summer, her favorite time of year, and it’d only add a couple more months to her life. So I decided against it. The crazy thing is - the chemo she would have been on, is the SAME chemo I was on. What are the chances?! She is doing great on 3 legs though. So now as I deal with the cancer in my lungs, we are waiting for it to reach Nala’s lungs…

This iv chemo I was on let me feel a bit more normal. I finally had a tan! For over 2 years I had been on meds that I’d burn in no time, but not get a tan at all. My hair was growing back which was very exciting. I wasn’t off the trial long before it started coming in. Unfortunately, on the trail I lost 20lbs. I was excited to be off it and gain back some weight but here we are, 8 months later, and I still haven’t gained any. My doctor said lots of factors go into it including my fast heart rate and low oxygen levels. My body is working harder to keep up. It’s frustrating to me because I feel that I look sickly and I don’t like that at all.

My son graduated high school in May and that had so many emotions come with it! I couldn’t believe he was old enough to graduate, I couldn’t believe I made it this long to see it happen! Once I knew I’d be constantly fighting this cancer and chances were good it would never go away, I really wanted to be here long enough to see my kids graduate. Get them off into their future and I could feel like they were set. I was so relieved to make it this far for Rease! My only worry now is I have 3 more years until Shaya graduates and with the way things are going now, I really don’t think my chance are good at being here that long... I’m so lucky I’ve made it 9 years since being diagnosed, but of course it’s never going to be long enough.

At the end of June I was back at Mayo for scans and to determine if I would stay on the iv chemo. Unfortunately the cancer was still growing and it was time to move on from this chemo. I hated this because it meant I’d probably be back on something that gave me shitty side effects. It took a while to get the paperwork/insurance all figured out, so I got to enjoy a couple months of summer on no meds. But I’m now on my third week of a new med, it’s a pill that I take daily. It’s a ‘sister med’ to one I’ve been on before and I already have some side effects kicking in. One of those being a sore mouth, and another is bone pain. I’ve dealt with bone/joint pain and swelling for a long time now but this is always at another level when it comes from a med.

There is a tumor behind my eye that we have been watching, but since it hasn’t been causing any issues, the doc didn’t want to put me through any radiation yet. (This is the radiation where they screw a frame to my head.) Shortly after leaving Mayo in June, I started having some little issues - a dark spot in my eye, especially at night when I’m tired. Then if I look to the right out of my eyes, when I moved my eyes to look straight again, the right eye gets stuck looking to the right for about a minute. And that’s when I get double vision. Early last week I noticed my right temple and eyeball was tender to touch. And a day or two later I woke to a very swollen eye. This lasted for 3 days straight. I messaged my Mayo neurologist and called my oncologist here. My doc here had me come in for a head CT to see how everything looked. The next morning I had a message from my Mayo doc who had looked at my scan results and said he would like me to come down later that week for radiation. I’m relieved they got me in so fast!

I am now home from getting the radiation. My Mom and I came down Wed evening, I had a couple appts Thursday and then Friday morning I had to be back to the hospital for 5:30am! They got me prepped- change of clothes, an IV put in, a calming med given. Then I was brought to a room where they put the titanium frame on. Having done this before, I knew what to expect. First I got numbing shots in my forehead and back of my head. And then the screws were put in place. The numbing med kicks in quick so by this point I feel mainly pressure w a little bit of pain and a weird crunching noise. After the frame was placed, I had a CT scan, MRI, and then went into radiation. I was very tired by this point and slept through it! When done they took the frame off and wrapped my head in gauze. I was free to go! In a couple months I’ll have a scan to see if any shrinking has started. Last time it took a few month for the tumor to respond to the radiation. The next day I was very swollen. The area where the screw was on my forehead swelled up Friday night and that swelling has moved down to my eyes and all around them. I'm hoping I am through the worst if it and each day the swelling starts to go down.

It’s been a hard year.. I’m feeling like I’m going down hill. Always waiting to feel better than I do but that doesn’t happen. Some days are worse than others, but I can’t say I have ‘great’ days anymore. Once in a while I’ll have a good day. Each day I’m exhausted and my body hurts. I don’t have the energy to do much of anything. If I work, I can’t wait to get home and rest. If I’m out doing something, which isn’t often, I need to be somewhere I can sit. I feel like I need to squeeze in all the fun things I want to do and see now, because as time goes on, I'm just going to get weaker and more sick. It’s frustrating, maddening and sad all at once. Why are these the cards I was dealt? It’s not fair. I look at old people and think how lucky they are to have lived such a long life. Or I look at my friends and siblings and think how much life and amazing moments they have ahead of them. I look at my kids and think about how much I’m going to miss out on. All the big moments they will go through without their Mom. I’m simply jealous of all the healthy people. I wish that could be me.