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.🤍