It’s been a little over a month since I wrote anything. Yes I’ve been busy, but I’ve also been spending a lot of time getting my thoughts together. It’s been quite the roller coaster to say the least.

Zometa infusion number two was on March 2nd. It was much better without COVID for sure! I was down for a couple days but that’s about it. Mostly fatigue. Debilitating fatigue. My blood work looked good and my tumor markers went down. So that’s a positive. This means it’s working.

I had to go in for another blood test on the 15th just to see if my white blood cells were down due to the Ibrance since I was also on my week off. Well, I had to postpone taking the next cycle of Ibrance because my white blood count isn’t where they want it to be. So I’m going in this week to get the blood test redone. Hopefully, it comes back with better news so I can move forward with cycle 2 of Ibrance. After I finish that cycle my oncologist is going to lower the dose a bit from 125mg to 100mg. That should help with the white blood cell count (we hope!)

The pain has not been that bad. And when I say not bad I mean, I feel pain every now and then for a brief time, and then it goes away. It’s not like it’s constant. Except for my back. My back hurts all the time. But I don’t know if that is cancer-related or me sitting most of the day working related. When I get pain it’s in my rib, spine, and pelvis mostly. After my Zometa infusion, the pain is pretty much all over.

I finally did it I started the Making of a Diva Podcast! I didn’t want it to be exactly like the blog, I mean that’s just no fun and well, redundant. So with the Podcast, I’m trying to hit the pillars of being a Diva which covers the Mind, Body, and Spirit. I want to enlighten people about being more present and in tune with themselves. Ways that others handle and deal with situations so that someone may have an ah-ha moment. I want to cover all topics from cancer to infertility and adoption. I was very apprehensive about putting myself out there and being seen. So I hope people get something out of it and enjoy it.

I have met up with a cancer group here in town that I didn’t know existed. It’s the Cancer Support Community. What a wonderful program they have. I’ve started to see one of their counselors who is pretty cool. I also attended my first METS support group today. It’s online because it’s from people all over Montana. I appreciate and love the other support groups in the area, but I was looking specifically for one with Stage IV members only. It’s a different mindset and a different conversation. Not everyone in the group has breast cancer. But we all have the commonality of what you go through when you hit IV. I can’t tell you how insightful it was today to listen to the members and tell their story and their outlook. I was able to ask the hard questions that no one wants to talk about. And everyone seems to have a great sense of humor.

There were so many things I took away today from this meeting. The first was a discussion we had about not looking at it as a battle and fighting. Not one of us in the group considers ourselves warriors with cancer or something we have to fight each day. As they put it, it’s like a dance. Sometimes you lead, and sometimes it leads. But the main thing is that we are learning to live with it and roll with it. This was a very different mindset with early-stage cancer. Because you knew you could beat it. With us, we aren’t going to beat it so you just have to learn to live with it.

The other thing I found insightful is how they thought about cancer in general. They do not let it consume them. They are not the victim of this disease. They treat it like any other thing that goes on with your health. They just live life the best they can and enjoy the time that is left. It is what it is. And I know a lot of people hate that phrase, but that’s about what it is for Stage 4’ers. It’s interesting because everyone is going to die. It’s just that those with Stage IV are a little more aware that it’s really inevitable and it’s very real.

We discussed how even before cancer and people without cancer, have good days and bad days. It’s just that our good and bad days have a little more attached to them. Maybe we are just hyper-focused on them as are the people around us. But we have the advantage of knowing why we are having a good or bad day, whereas noncancer people may not always know.

One of the first things that go through your mind when you are told you are terminal is that you have weeks or months to live. Every person’s cancer is different. Even two people with the same exact diagnosis are not going to have the same treatment because there are so many variables that are unique to the individual. And just when we think we have it down, new information comes up or things change. So treatment is a moving target.

As horrible as cancer is and all the negativity, I’ll tell you, I have met some of the most incredible people through this journey. And I would have never met them if it wasn’t for having to go through all of this. Not just other patients but, nurses and doctors, rad techs, and support staff. There are truly genuine people out there who care and are empathetic and want to help. I have grown tremendously over the last 7 years. And I keep growing and learning and listening to others’ thoughts, experiences, and take on situations. It has been the best learning experience ever.

And there are so many people who don’t die from cancer but from the treatment. And of course, something else could take you out like a meteor, avocado truck, or plane crash. So what it comes down to is, no one knows. We don’t put things off til later because later is already here.

I haven’t written in a bit because it’s been a little crazy.

I had my first event of the year January 30th-Feb 1st. Then on February 2nd, I had my first Zometa infusion. I mean okay it was pretty uneventful for the most part. They said I would probably be a little tired and then have mild flu-like symptoms. I can totally handle that.

I got home and crashed. Slept for 26 hours. Woke up for an hour and then crashed again for another day. I was in so much pain and the flu symptoms were horrendous. The coughing was so bad that I had to hold my head then I coughed. I sent a message over to my dr. and she was like it’s the worst side effect she’s ever heard of. Well, why? Because I also tested positive for COVID. Yes, I FINALLY got the COVID. Perfect time to get it. I have no idea when covid symptoms started and I have no idea what are Zometa symptoms and which are covid.

I’m still coughing and things hurt and my head is killing me. Still have no idea what is what. I get my next infusion on March 2nd. That should sort some things out. And yes, I’m staying away from all people as much as possible.

With this, I have to wait until I get better and at least am not nauseous before I start the Ibrance. So in between all this, I’ve been navigating my way around the specialty pharmacy. Quite the interesting ordeal. Needless to say, everything is taken care of and I’ll finally get to start the Ibrance here in the next week. That didn’t take long, did it? Turns out they sent everything to the wrong specialty pharmacy that was out of network. So they called me and I got everything straightened out. But this is the hardest of it all (supposedly) Once they have me in the system everything should go rather smoothly from here on out.

I’ve been seemingly doing absolutely nothing but binge watching food network this week. But in reality I’ve been doing a lot of thinking and figuring things out. A lot of self talk and some coming to reality conversations with myself.

Friday, Pete and I went out to dinner. I mean, Montana Club nothing over the top, but it was nice. Then we came home and played games and listened to music which was also fun. But it was noted that I am NOT a good loser at all. But when you are playing hangman and they guess your word and then just take down their word and don’t tell you what it is…well, that’s just rude! (StarWars…the word was Star Wars. Which in reality is 2 words so he should have been disqualified but, whatever.)

On Saturday the PlumTree Events team all went out for dinner and crafty stuff. We went to Mustard Seed. And I am so glad I did this. These ladies really keep me going. They are fun and I’m glad I have them. After we went over to some ceramic shop and painted things. That too was fun. They are WAY more creative than I am!!! I can’t wait to see their things! We talked about what type of events we want to do going forward. And everyone pretty much is on the same page.

Sunday we watched the World Cup and then Ashley’s (my DIL) friend Natalie was up this way so we met for lunch. It was good to see her again (we just saw them for thanksgiving) but to talk with her and just catch up was nice. It was so kind of her to reach out to me to meet up. It makes me so happy that they have such a wonderful group of friends.

Monday – Wednesday I watched a lot of Chopped and Love it or List it. I’ve also slowly been figuring out what I’m going to do with myself and my business. I have just gotten to the point where I know I’m going to have to every day (which I actually did today…sweated and everything!), get enough sleep, meditate and watch my portions. While I’m sitting around waiting I might as well come up with my own plan. Pete comes home with new information and studies he’s read. I act like I don’t want to hear it and dismiss it but I listen to him.

Oh and Monday was my birthday. I stayed off of social media so that was good and then Tuesday my rocking chair came in. I had no idea there were so many health benefits to a rocking chair. Go ahead, google health benefits of rocking chair.

I’ve had so many people sharing their infinite wisdom with me and things they have read. So I have to spend time weeding through everything and figure out what makes sense to me and then bring it to my Oncologist. I mean I get it that people are trying to help but maybe frame it as “Hey I saw this study and thought of you, when you get a chance, read through it and talk with your oncologist to see if it’s something that would be beneficial.” I’m going to take that much better than “I saw this and I do this and it can cure your cancer.” First people…my cancer can not be cured. I’m learning to live with it. Maybe I will be lucky and it will go into remission at some point for a bit. But it will always be there! If you found some bean or herb from the amazon that will cure cancer, I want to see the papers on it.

Here’s my take on this stuff. Placebo effect. If your mind thinks that something is working it will seem like it’s working for a period of time. To me this can only work so long before it stops working. I have yet to see definitive papers and studies that a lot of these “cure cancer” or “keep cancer away” remedies work. Although Pete came home with a study that said that something like 84% of people with stage 4 cancer who exercised lived longer than those who didn’t. Not exactly what I want to hear but, fine…I’ll do it. I mean I sometimes think this happened so I would finally. Take care of myself. THIS is how stubborn I am.

I do NOT like people throwing prayers at me. That is to make themselves feel better. My thought and prayers and message to you is: I appreciate you wanting to help, but maybe this is something that I need to go through and people around me need to go through to learn a specific lesson. So in terms you can understand it’s God’s will and you shouldn’t go against him or question His decisions. I’m not a religious person but I appreciate something that gives people strength and personal power, and if that is a Christian God for you then fantastic. I don’t really want to get into a whole theological discussion but, I would hope that people would also respect my beliefs when they open their mouth to me. Because honestly, it’s not about you and making you feel better. It’s about me and finding MY strength to get through this.

I created a Facebook group that just gives basic updates as they happen. You know, because people don’t always want to hear all the details and me ranting about everything. (I can’t imagine why!)

I have my notebook ready all divided out so I can keep track of things and have all my questions and stuff in one place.

As I was doing research and learning more about all this Metastatic stuff, I came across a site that was very interesting. And of course there was information about being a peer to peer leader. Well DUH. So I submitted my application to see if I get accepted to run a support group specifically for Metastatic Breast Cancer (MBC).

Of course then I got thinking. I’ve been looking for an organization to help raise money for and have an annual event. Well…look at that. Then of course I was thinking some more and I have been putting my coaching business on the sidelines because I really didn’t know what I wanted to do with it. Well I think I know now.

I’ve been spending a lot of time on Cancer Boards and specifically MBC boards. It’s interesting that MBC is really not known. People either don’t want to bring it to the forefront because it’s what people die from and it makes them feel uncomfortable or they just have no idea what it’s about. Honestly before I was diagnosed with cancer I had NO clue there were different types of breast cancer. And now that I’m part of the MBC community I’m learning crazy stuff about this.

Most of the funding and research is going towards prevention. And although that is wonderful, what about the people who are already terminal? There is a movement to get MBC to the point where it’s not a death sentence, that it would be looked at as a chronic condition. But because of the lack of education and research funding that isn’t happening.

I’ve never been someone who was passionate about anything really. I mean okay, yeah, I feel strongly about certain topics but nothing I have been truly passionate about. Even with just a cancer diagnosis I was kind of distancing myself from it because I didn’t want it to define me. I just wanted it to go away. But with this, it’s different. Maybe because my life is kind of on the line here.

The first 2 days after I was diagnosed were rough. I was scared to death and had no idea what to do. Now as much as I love to sit around and binge watch shows I am going to just sit around and wait to die. I mean that could take years and what a waste. I decided I was going to take a week off to think and figure out things in my head. How do I want to spend the rest of my life, whether it’s 1 year or 15 years? I know that studies have shown keeping busy and staying active helps you mentally and physically to live longer. SO, that’s what I’m going to do.

The one thing I haven’t quite figured out is my business. It’s not a “am I going to keep doing this” sort of decision, it’s more of a “what direction am I going to take this in.” What is most important to me and what am I truly passionate about? I don’t know that dealing with weddings is where I want to go. Or maybe I do a specific type of wedding. I just have to do things that truly have meaning. I have always had this thing where I need to help people…and I’m talking people who need it and appreciate it.

You know I do things what I think is blindly and somewhere down the line it all falls into place.

Had the call with my oncologist today. I don’t think she appreciates my humor though all this at all.

The first thing we are going to do is biopsy the bugger. I will know when that is this week. Yay bone biopsy. I have been told that it’s going to suck ass pretty good.

I saw the pictures from the PET scan. So, that was interesting. It’s in my sternum, rib, spine, pelvis and hip. This actually explains a lot. I mean it’s kind of scary. And I keep wondering if some meds weren’t working at some point or what happened. I suppose it doesn’t really matter at this point. I mean here we are.

After the biopsy we see if it’s still ER/PR+ or if it has changed. This will allow the doctor to come up with the best plan of action. But from what my Onc said it will be a more gentile treatment than the first time around. Last time we were sprinting, this time it’s a marathon.

I’ve been trying to wrap my head around all this stuff. Logically I know what I need to do, but emotionally I’m a mess.

I did decide to just take some time to figure out what I’m going to do and the best way to approach this. This includes seriously prioritizing what is important and not important to me. Everything right now seems like any small step or decision is at least a step forward.

Last night I started to read the Olivia Newton John book, Don’t Stop Believin’. It’s okay. A lot of good perspective in there. But as much as I love her, something about someone who makes millions of dollars and has access to things normal people don’t seems a little unrealistic. But nonetheless there are some good perspectives.

Everyone one’s journey is so different. It’s really hard to find something that is right on what you have dealt with. Maybe if enough people tell their story, someone will find one as close as possible to theirs to gain strength and perspective with.

I’ve been doing a lot of pondering and so far where I am is:

1. This is complete and utter bullshit and I am NOT happy about it.
2. What the actual FUCK! I mean seriously…WHAT. THE FUCK.
3. Okay get your shit together because this is what you are dealing with whether you like it or not.
4. Stay positive. It may not cure anything but it will help with treatments and not stress you out.
5. Seriously? I mean what the fuck?
6. I honestly don’t have to do anything I don’t want any more.
7. I don’t have to worry about reoccurance
8. Keep busy with things you enjoy
9. Fuck!
10. Live life to the fullest. Enjoy every moment.
11. Don’t dwell on the situation. Pondering and thinking and obsessing over it isn’t going to change it or make it go away.
12. Everything is going to be fine.
13. Well this is a set back I wasn’t expecting.
14. WHAT THE FUCK!
15. I can eat ALL THE THE THINGS!
16. Let’s go skydiving!
17. To make sure that you feel the best for as long as you can you need to really watch what you eat, exercise, get enough sleep and take care of yourself.
18. SLEEP!!!!
19. Where’s that list of things I want to do?
20. How am I going to approach my business and where do I want to take it?
21. The reality is I have like 5-10 years probably so why not just carry on and not make any changes at all?
22. I have to look at this as having any other disease. Yes, I am going to have to change some things to accommodate treatment, but that’s it.
23. I could totally get hit by a truck or struck by lightening. You just don’t know!
24. Everyone is going to die. It’s not until you are faced with your own mortality that you start to worry about it. None of us knows when our life will end, so make the most out of each day you have.

Thing have been going pretty good. About 6-8 months ago I started to get a pain in my sternum. I just figured I slept on it wrong because I am kind of one of those all over the place sleepers. I was doing a wedding on June 16th and this feeling I haven’t felt in a long time came over me. I actually said to myself out loud, “It’s back.”

I have been going to the oncologist every 6 months and nothing seemed out of the ordinary. I mean yes I was tired and having bone pain but we figured it was because of the Tamoxifen. So we decided to take a break from it for a bit and then get me going to start exercising more while I had the energy and hopefully develop a habit that would override the affects of the meds. We were talking about these new meds and I was concerned about my heart. I mean having a family history of heart disease I figured this was something that was probably good to consider. So they made a referral to the cardiology department. They found my blood pressure was a bit high for their liking and had me track it and set up a CT scan vs an Echo just so they could see more.

Results came back with a sclerosis of the 4-5th rib and sternum, and some nodes on my lungs. So okay, we are now going to do a PET scan because of findings. Now keep in mind I’m all worried about my lungs because well I am. And this sclerosis with the sternum and ribs figured okay well that’s why that hurts. Again not thinking much of it at all. Note the cardiologist seemed unusually upset and weird and said they were going to turn it over to oncology. Okay, note I’m still not thinking anything major except for these nodules on my lungs! Oh, but my heart is just fine!

While I was waiting for the PET scan day to come up we went down and and the most amazing time with the kids in Colorado. Everything about it was great. It was so good to be around family and friends for a week!

Come back have to wait like a week before. So threw myself into work because that’s what I do. Then PET scan day comes. I’m trying to not freak out on the way there. I mean, nothing that will change the outcome for better or worse so no need to react.

I pull my shit together, they get me prepped. Yes Valium is a marvelous thing. Do the whole test thing. Great.

The first thing I do is go get a cheesesteak, kandy kakes and butterscotch Oh and vanilla cream soda. I mean I feel I deserve this.

The rest of the day I just tried to keep busy checking MyChart every 5 minutes. No results yet.

The next morning the results come through. I’m reading and everything looks good, lungs are good and I’m like “YES!” I scan through everything else and then the phone rings. My oncologist. Dr Scott. She is very upset. (Why are all these people upset all the time!) And she runs through and tells me what everything means. Something about Stage IV, terminal, metastasized to bones, not curable but can be treated, this is what will take your life. I’m still not comprehending much. So I’m like, um…so what exactly are you saying? She repeats what she said. I’m like oh, so I get to see you for the rest of my life. She kind of laughed and said yes.

Hung up and just kind of laid there. Then it started to hit me. I sent the findings report over to Pete and let him know. He called me and said he was coming home. I’m like, no, it’s fine. Well no it wasn’t. Next thing I know Pete is home. Lots of crying on Friday and talking about what we were going to do and not going to do. We went out to lunch and ran some errands. Then came home and drank.

On Tuesday we have a meeting with Dr. Scott to go over all the details and talk about treatment.

It’s all very surreal. I’m not going to just sit around and wait to die. I have heard of many people living years with Stage IV especially Mets to the bones. So I’m just going to keep doing what I’m doing until I can’t do it any more. I mean we are all going to die and it’s not until something like this happens that you understand your mortality. But it’s very different this time around. I mean at least now I don’t have to sit around and stress about whether or not the cancer will come back! Like she’s here and here to stay, so we are going to figure out how to live together as long as possible. Like having a roommate in your body. Bitch better not get out of line!

Now of course I had to name her. I mean, the initial cancer was Cruella. But this one is different. She’s the ultimate villain. She’s not going anywhere and she’s in til the end. So what better villain than Maleficent! I mean she’s the ultimate. And just seems very fitting. So from here on we will have the tale of Maleficent and of course the inevitable Dragon Maleficent.

On a more serious note. I will be spending some time pondering what my priorities are and exactly how I want to live out the rest of my life. I’m not going to stop working quite yet. I think it will keep me going. I will eventually have to change some of the things I do that are more physical, but I was moving towards that way anyway.

I’m also going back and forth between giving a shit and not. I mean part of me is like, what the fuck do I care? But I don’t know if I can really ever do that. I guess we will see.

Next update will be after the meeting with Dr. Scott and THE PLAN….