Hello friends and family!
My sister and I just returned from my visit with the oncologist this morning. I went in pretty fired up over some issues with him but he knew I was mad before he stepped into the room...like a good man, he came straight in with an apology!! I was able to voice my concerns and hear some things from his side, so we are all good now. In fact, I think our relationship took a step forward in a big way because we sat and communicated our needs. I realized laying awake half the night thinking over the things I wanted to discuss with him, that my relationship with him is not unlike the one with my husband or others. If I don’t ask my husband for something, he won’t read my mind. When I ask, he rarely says no. Like I told the doc, I plan to live a long time so we are going to spend month after month together and I need to feel good about that. He quite literally has my life in his hands. We ended with some funny jokes...my sister told him she came along to make sure I didn't give him a black eye. He opened the exam room door and asked the girls to call security on me. It ended on a positive note for sure!
First, thank you to everyone who messaged questions! I honestly wanted to experiment a little and see if I could somehow get people participating in the topic rather than me ranting on and on! Putting out a video was so far out of my comfort zone and I did that thinking that if I want people to not be shy and try to get them to participate in the breast cancer discussion, then I have to be willing to not be shy and essentially beg for some questions! I said “okay self...what is the worst that can happen? You already have a terminal illness, can it be worse than that?” So with that, I put it out there with half my make-up on, a big zit on my cheek, and lesson learned not to ever do a video in a strapless dress!
Again, thank you for the questions and here you go...
Q: How are you doing today?
I feel terrific today! It has taken almost 9 months to say that. I always had and will continue to have good and bad days both physically and mentally but I’m mostly so much better mentally today. I cannot take all the credit for that. I have a wonderful family who love, support, and make sure I stay as normal as possible. They will not let me become a cancer princess!
Q: Did you get your big heart and good looks from your mother?
I’m guessing you know who gave me this question! The answer is YES and more! I can also be feisty and fierce when I need to and these have come in handy many times in life but most especially since my diagnosis. Coming from a family that uses humor and can find it in most situations has been a huge benefit to me. In this family, we love hard, sometimes fight hard, but we also have always laughed hard. I love that we can laugh at my current situation. Anyone who knows me, knows that I’m constantly making cancer jokes. This is not to say that it’s appropriate for everybody but I’m gonna laugh until I’m dying.
Q: How is your son and how are you keeping him informed on how you are doing?
My son is also doing well. Only my family knows this, but when I was diagnosed, we decided to have him show up at my sister's house where everybody was there for support and then the news was broken. We did not want him to be alone when he found out. After I first moved back to AZ, he drove me and attended all of my doctor visits for the first couple of months. I think he needed to see that they are taking care of me. Otherwise, I always try to relay any big news to my family directly before I share via social media.
Q: How is your husband holding up through all of this?
Mike is also doing well. Like me, there are good days and days that the weight of it all is too much. He tries to bury his head a bit I think and says all the time that it’s easier to do that now that I don’t seem so sick. He can’t go through the days with the tick-tock of the clock as I sometimes do since he needs to work and try to hold down the fort so I can focus on staying healthy. I think in some ways so much of this is harder for him than for me. I am grateful he has good friends and hobbies to take him away from “cancer land”. I do try really hard to keep it out of our environment as much as possible but it’s just like a bad guest you can’t quite get out the door some days!
Q: How is Brennen doing in general and with this?
Brennen is pretty much your typical dude and hasn’t spent much time telling me his feelings in all of this. I know because he said that even if it’s going to the doctor with me, it’s still spending time together. I know that everyday at 4:30 during the week my phone rings and he is calling me on his way home from work. I know that every weekend he will make time to see me even if it’s just coming over to hang out on the couch for a bit. I’m okay with that...actions do speak louder than words. He is one of my favorite human beings on the planet. He has turned out to just be a really neat person and I couldn’t be more proud of the man he’s become.
Q: Do I have a bucket list?
I don’t have a bucket list! I pretty much knew as soon as I got the news that the only thing that mattered to me personally is spending time with those I love. I have zero desire for anything bucket list worthy...not that it’s not a great idea! It just doesn’t appeal to me personally and it’s a good thing because my legs don’t quite work the way they used to after radiation to my femurs so I’ll leave that fun to someone else!
Q: Since you brought it up, what songs do you want played at your funeral?
Haha! I was joking on this one! I haven’t actually thought of any songs yet but I have been busy working on memory books and writing letters to my family. My wishes have been made clear to my family. Preparing for end of life is very draining so I try to do a little here and there towards it. I’d like to accomplish everything while I’m still feeling good.
Q: Do I get mad seeing the metastatic breast cancer medication commercials that make it look like a walk in the park?
HELL YES I DO!! Those commercials turn my stomach! I’m a huge fan of getting the word about MBC out there but these commercials are dumb.
I am a part of two support groups on Facebook that is only for metastatic breast cancer patients. Nearly everyday I am reading about someone who just died from it. The truth is ugly and making it look otherwise is absolutely shameful.
You can see from my recent Facebook posts, I’m really trying to spread the word. It is absolutely shocking to me just how much I didn’t know going from early stage cancer to advanced stage. I wish I’d had a good doctor back then who sat me down with statistics and explained metastatic breast cancer to me.
Q: What kind of pain did you start having when your cancer came back?
I was having terrible low back pain. It turned into numbness down my legs and then into severe hip pain. Over the course of about 2 months, I saw 4 doctors who knew my history and blew me off. Additionally, about 1 year ago today, I had nausea that started and didn’t leave until January!! Finally, my last doctor (I love you Doctor Kuper) told me she believed me and that if I stuck with her, we would find out what was going on. I did several tests with her that turned up nothing but she kept calling me back in for more tests. Finally I had a potassium problem as well as high calcium levels in my blood and she called to tell me that if anything at all were to change, she wants me to go directly to the hospital. Well, that night I went to bed and had the most horrible pains down both thighs and I lay there crying for a good hour before I called my husband downstairs and said it’s time to go to the hospital. By 2AM on November 14, I had been through a CT scanner and got the news that I had cancer growing everywhere in my bones and later confirmed it was also on my liver.
Q: Do you feel like something was possibly missed the first go round?
As a matter of fact I do, though I’ve been told it wasn’t. My cancer spread through my bloodstream and not my lymphatic system so I feel like it could have been missed. Standard of care for my type of breast cancer was an MRI upon diagnosis and then surgery to remove cancer and test some lymph nodes. Obviously mine were clear because that is not how it spread. As far as I know, I still don’t have cancer in any lymph nodes.
Q: Do you think your perspectives on life/issues have changed since you were diagnosed?
YES!! I do have to keep myself in check on this one. I’m better now, but for the first few months it was really hard to listen to other people’s problems. I hadn’t had a chance to get my head wrapped around things the way I do now and in fact, I love the diversion of other people’s problems now! It’s always easier to help someone else solve their shit, right? Anything to take my mind off cancer is welcome!
I don’t fear the same as I used to. Once you are told you have something growing inside you that can kill you, it’s kind of hard to be afraid of so many things. Today with the oncologist was a perfect example...it was easy to go in and speak my mind. If the visit didn’t go how I wanted, I was going to search until I found the doctor who would be what I needed. In the past, I might have stayed just because I’m already settled in and have a routine. Knowing my days are short, I’m just not willing to sacrifice my happiness or settle in any way.
It’s really hard to name all the ways in which I’ve changed. I’m still changing. I haven’t even gone through a whole year yet with this. I hope that people close to me can see that I’ve made good changes. I’ve definitely had a strong focus on spending time with my family. I have also become so passionate about spreading awareness of my disease and it’s lack of research funding. I understand that my shouts from the rooftop most likely won’t help me, but I do feel strongly about helping any ladies or men (yep, men get breast cancer) who come after me. So many things are not right...my whole family is suffering because of this and all I can try to do is make a difference for future families. I've been calling on my friends to help me spread it...even it it's sharing my blog or my posts...this is how we can change things.
I hope everyone has a wonderful weekend!
Much Love!
