Saturday, March 3, 2018

Let's Talk About Death Baby

March 3, 2018

Why is it that we can't have a conversation about death and dying? Are we afraid? Do we think it's inappropriate? Are we assuming that if a person wants to talk about death it means they've given up? A friend just said people have this conception that talking about death will kill us. And she's totally spot on. It's like people think that by allowing to me share my feelings on the subject it will jinx me somehow and cause an early demise. Well hello, jokes on you because it's already a likely outcome. And that's okay, I understand. But really I mean death is a part of life and it IS going to happen to all of us someday. And maybe, just maybe, we wouldn't be so afraid of it if only we just talked about it a little bit. And I don't mean dwell on the subject, or become so overcome with grief that you can't live normally. But even for a perfectly healthy person I think it's not a bad idea to at least ponder the end, think about what you might want, or just as importantly NOT want. It seems to me, as a not perfectly healthy person that it's kind of a necessity for me to think about it. I don't want to be the person who was so busy denying the inevitable that it arrives and I'm not ready and have no plan.

I've always been a planner, and I'm all about the little details. After all it's all about the little things. So wanting to plan and be specific abut my wishes and expectations is really important to me. Especially because I am not like the majority of the population. Not only do i not want extraordinary measures, there are some treatments and measures that many consider to be perfectly normal and basic that I also don't want. Because of that I want to be sure that everyone in my circle is very clear about everything. It's kind of hard to do that when my circle would rather pretend that I have a bad cold that's going to clear up and heal completely. It's weird because usually it's the patient who is in denial about their condition and the mortality of it. Again, I am not the "norm". And that's okay.

I do not accept pressure to alter my wants and needs for the sake of making someone else feel better about me dying. Nobody should feel like they need to do what makes others more comfortable when the end comes. That's not selfish that's real. Deep yes, but real. I may not agree, for example, with a persons decision to spend what time they have travelling the globe chasing new treatments that kill you just a little slower than a disease itself. But that's not my decision to make, nor is it my place to encourage that person to change their primary instinct to make me feel better. I may think it's irrational and, again, that's my personal opinion, even if most people would agree with me. It's just not about what "most" people want, it's about what each individual wants, what they need.

We all should be having this kind of conversation with our loved ones. It's so much better and easier to talk about something that's down the road and having time to think and share and discuss and question, than it is to wait because you're afraid. Because you'll inevitably discover there was something you weren't aware of and wish you had been. You may find that you're not prepared for whatever choices your loved one did or did not make. If you have questions, or don't understand something you can ask. And your loved one will likely be happy to answer and explain. And your job will be to accept and support. Be there. Be their advocate and let them know that you've got their back.

Death isn't always easy to talk about. It's sad and it's scary. But it's necessary, especially for the person who may be faced with it in their near future. Let them talk and hear what they are saying. Talk back and make sure they hear you too!

Thursday, February 22, 2018

February 22, 2018
Today was my last of 3 appointments this week. I met with my Doctor first, who told me there is zero evidence of any new or progressed cancer. My tumor has shrunk by nearly 90% with what remains being potentially dead. The tightness and dry cough I had been experiencing are/were a result of scar tissue caused by the radiation. This is all good news and I’ll take good news. Today was the first time to have my new port accessed, and I was nervous I won’t lie. It still hurts from being placed, mostly my neck but also the port itself. And they don’t give numbing cream anymore because someone had a seizure 😳 The Huber needle is intimidatingly big, not like an IV. It was not horrific though, one sharp deep stick and done. And because my port is so new it will likely smart less as time goes by and the area heals. I brought all my people the cupcakes and they loved them. After arriving back home Brian and I went to dinner at Texas Roadhouse with our good friend Jim, in town and visiting for a big EMS Today Conference. Yum! Overall today was a very good day!
Now, if I could just sleep at night! I don't know if it's the new and higher dose of medicines, anxiety or what but for the past few weeks I'm lucky to get 3 full hours each night. I am almost always awake between 1:30 and 5:30, and can't fall asleep before midnight. When I don't have to work I can sleep in until 9 but when I do I'm up and moving by 7:30. My doc suggested try something simple like melatonin to start and see if that helps. If not we will look at something more substantial like Ambien. Our joint concern is adding drug upon drug, as nighttime is really the only time I take meds, but they are hefty for pain. We don't want me to accidentally forget to wake up in the morning! SO we shall see how the next couple weeks are and go from there.


Wednesday, February 14, 2018

News On the Battle Front

February 14, 2018

What a really great day. I had fun as always at work. I received a wonderful treat of chocolate covered strawberries from princess Ashleigh, chocolate chip cookies from my momma and Dougie, and a beautiful gift along with the most delicious scallop, baked potato and broccoli dinner from my guy.
So some news on the Battle front. I went in for my infusion last Thursday and after 4 unsuccessful tries at an IV we all gave up. Thankfully the doctor said he was okay with me just waiting until my next scheduled infusion, which will be a week from tomorrow. Unfortunately though, because of my history of really small veins he asked me to please consider allowing them to place a port. It’s basically the upgraded version of a picc line- instead of the catheter ends hanging out on my arm ready for use, an incision is made in my neck near the collar bone and the catheter is fed into a main vein that leads to the heart, and then the end is attached to a quarter-sized disc that is placed under the skin in the chest. Pros to this are no ends hanging out to worry about, more permanent and allegedly easier to basically live your life. Cons are it’s a surgical procedure with higher risk of infection, can cause more initial discomfort and you still get poked every time they access it, although they won’t “miss”.
My very first response was that I would only consider it if they agree to do the procedure sans drugs and sedation. In other words I get to remain completely coherent and thus an active decision making participant. We will be doing this with a simple Novacaine and nothing more. It is my personal opinion that the majority of the time a cocktail of drugs is used far too often and more for the benefit of and to make it easier for the doctors and staff, not the patient. I am aware that most people would rather be rendered stupid and I appreciate that. I am not like that but rather the 1% of people who prefers to be in control and able to make my own decisions should the need arise. Yes, I know that I am one of the medical worlds biggest pains in the ass, but honestly I don’t care. I am my advocate and not theirs. My doctor (who I already told you I love) mostly just chuckles, but always says he’d rather have a patient like me than one he can’t have a frank conversation with, or one that has no clue. I really am blessed to have been matched up with him and his team.
So moving on to my other worries. Most of them are vain and I feel bad for that when I need to just be thankful. But I do worry because I’m human... I just finally have gotten to a point where I’m not obviously “a sick person” when I walk around. I have hair again, really really short but it’s there and just looks like I have bad taste in styles. I’m okay with that. I’m not pale and blah anymore. The picc line is gone so there’s nothing else to stare at and bring attention to me. A port is pretty obvious, and will be even more so as summer approaches. I was really looking forward to wearing my happy tees and tank tops and getting a little color. Basically starting to get back to a little bit of normal. That chance is gone again now because anyone with eyes will notice the port. And yeah, I know it’s vain and dumb but it’s a feeling and it makes me a little sad to think about it. My doctor told me if anyone ever looks at me “just tell them to fu*k off”. Literally verbatim his advice. Ha ha I do love the guy. Anyway, my other worry... this ones a doozy and I laugh at my craziness a little bit. So, any Greys Anatomy lovers out there? There’s an episode where Meredith is finishing treatment with one of her patients, a cancer survivor. Her last step before leaving the hospital and getting on with her life is to have the port removed. Last bit of evidence of her journey. Long story short? Her port had gotten infected so when they tried to take it out she bled to death in an elevator on the way to the OR. Talk about a shitty ending to a brave battle fought by a cancer patient. I know I’m a dork, but the show isn’t all fiction and crazy things like that can and do happen. So I worry.
But the other night when I should’ve been asleep I had a really long talk with myself. I explained to me that while yes weird things happen it’s not the norm and it’s not going to be me. Yes, you’ll be able to see the port, but like the good doctor says, anyone who needs to look can fu*k off. You will be proud of your body and proud of the fight you are putting up. In the end this will be nothing more than another little battle scar that you will wear with pride. And you are not getting any drugs in the OR so anyone who steps out of line will get a swift kick in the ass. Amen. The port goes in on Monday afternoon, and I do have lots of drugs at home so if I’m sorry later I can take some and go to bed. I have a CT scheduled for Tuesday to check the status of my cancer, and treatment on Thursday. Busy week for me. I will keep you all posted.





Wednesday, January 24, 2018

2018 has been good to me so far. I’ve been doing well at my part time job in a bakery, and it’s been good for so many reasons. Most of all it’s keeping me moving. I still only work about 5.5 hour shifts three to four days a week but it’s so better than sitting home. I’m on my feet the whole time and moving around so it’s good exercise. The nature of the job allows me to be artistic and also a neurotic perfectionist so I get the best of both worlds without making Mark or Brian crazy 😜 (well I mean mostly). I am well into the routine of biweekly infusions of the new immunotherapy drug, tomorrow will be my 5th trip. Only 19 more to go... Some of the key side effects are definitely there; fatigue, joint and muscle pain, decreased appetite and a few others. But, for the most part they are manageable. I know it could be way worse. Been there, done that, prefer to pass on any more of that. Not that I ever thought about what life with cancer would be (who does?), but it’s not what I guess I would have thought. I’ve actually learned to be happier, kinder, more appreciative. While I certainly did not slow down by choice I did slow down and in doing so have been able to just be... content. More aware of others. Much more easily satisfied with my life overall. And I’ve been able to let go of a lot. I guess I’m just happy. Happy to be, happy to do whatever it is I am at any given moment. My whole family are rock stars of course. They have been my strength, bravery, will, and I can’t put into words how much I love them all. P.S. I am so totally getting this done the very moment I have enough hair back to do so! Maybe I can convince princess Ashleigh to join me 😉

Saturday, January 20, 2018

January 20, 2018

Welcome to my life! I started this blog after much encouragement from friends and family to keep a running journal of my life and experiences as a person living with cancer. I went back in time and added all of my journal entries documenting my time from diagnosis through treatment, leading to today. I am hoping to learn how to navigate and connect with others in similar circumstances, as well as sharing my own. As wonderful as all my friends and family are and have been, very few of them have actually walked in my shoes. I want to know people who truly get me, get my thoughts and feelings. Please browse my stories and feel free to reach out!

The Journey: Confessions of a Black Cloud: It all began in July 2017. I thought I had bronchi...

The Journey: Confessions of a Black Cloud: It all began in July 2017. I thought I had bronchi...: It all began in July 2017. I thought I had bronchitis. I was very wrong. Within 2 weeks I went from being a "normal" person to a v...
December 31, 2017

As 2017 comes to an end I find myself reflecting back more than I ever have. To simply say this past year has been a challenge would be an understatement of monumental proportions. It has easily been the most difficult year of my life and, having been through more than most I think throughout my life, that really is saying a lot. I have endured more in a handful of months than I ever thought I could, or even would allow. I have felt every emotion to its fullest extent over and over. And while this time has been my most challenging...it has also proved to be a time of overwhelming love, happiness and contentment. I’ve had the opportunity to really truly see and feel what matters most. The love for and from my dearest friends and family has carried me further than I ever knew was possible. While my future remains uncertain I find myself settled, content, completely happy. I am blessed to have been so enlightened at a time when I needed it most. My goals for 2018? I will continue to be thankful for all that I am and have each and every day. I will be thankful that I am well enough to work at a job I really enjoy. I will be thankful that I have the very best parents, children, soul mate, and friends that a girl could ever hope for. I will be thankful that I am here. And I hope nothing less than the same for everyone around me. Life is beautiful and it is a blessing. You just have to stop a second and realize it 🙂




December 15, 2017

Yesterday was my second infusion of the new immunotherapy drug. Only 22 more to go over the next 11 months. So far the side effects have been mostly minimal and more importantly tolerable. My doctor is hopeful it will stay that way and that gives me some comfort. While an oncologist is easily the doctor I never ever wanted to have to know, he has become the favorite doctor I’ve ever known on a personal level. He is kind and truly concerned about my well being, and has been very honest and straightforward with me, something I appreciate more than anything. He talks to me like a real person and respects my wishes and opinions. I went back to work two weeks ago and it has been awesome. Not working was really hard for me, not really because I wanted to work but because I couldn’t work. Someday I’d love to not work, but as a choice and not because I’m too sick to do it. I only work about 20 hours a week and honestly by the end of my shift after being on my feet for 5 hours straight I’m achy as hell. But it feels really good as weird as that may sound. Being laid up for 4 months took a toll and my body is slowly learning to be active again. Being sedentary took as much out of me as being sick did and I look forward to gaining my momentum back. I didn’t go back to medicine but rather something that has always been a love, baking and decorating cakes 🎂 The folks are very kind and understanding of my needs, and it’s been a great fit so far. And speaking of baking my yearly tradition of baking way too much stuff for my friends and family has begun! After work today I got my kitchen set up and whipped off 2 different cookies and some mini cakes. Tomorrow I will work on 3 more things and then another 3 on Sunday. We’ll be heading north a week from today and of course I can’t wait! Nothing in this world compares with spending time with loved ones.




November 16, 2017

My doctor called me first thing this morning. Personally, no nurse or assistant. He wanted to tell me right away that my insurance company has approved his request for the new immunotherapy drug. I have now become the new standard of care for my type of cancer and will be the first patient after the trial phase to be treated. Technology and years of research have arrived just in time for me. There are no guarantees but there is great hope. I will have to undergo one hour infusions every other week for a year. For those of you who really know me well you know that I am not a great patient. I try, but am and always have been inherently untrusting and terrified of any and all tests and procedures. The one and only personal experience I ever had prior to this was a textbook example of literally every single thing that could go wrong, and it jaded me. Now, in the last 5 months I’ve gone through numerous blood draws, IV’s, MRI’s and Pet Scans, sedated bronchoscopy with biopsy, placement of a PICC line, radiation and chemotherapy, and a whole slew of medications. I have had no choice but to trust a whole lot of people, and basically give up control to strangers. I have worked with and witnessed hundreds of doctors, nurses, techs etc. over the years and I need to share that the folks at Carolina Health Care have been the absolute most phenomenal, kind, compassionate, professional but personal people I have ever come across. Ever. I just can’t say enough kind things about them. Every single person. They are my people.
November 13, 2017

All done at the doctor. He said my scans are impressive and the tumor has shrunk by about 80%, and that what’s remaining could be nothing more than dead scar tissue. He said my chances of being cured have gone from 20% to 50%. Only time will tell, I have to get to 5 years without recurrence before they use the word cured. There’s always a chance that it is hiding and will come back. The new immunotherapy drug he wants me to take has gotten more good press since he first mentioned it so he said he’s confident my insurance company will approve it. It would be a one hour injection every 2 weeks for a year. He seemed really excited and said he even talked about me in a big meeting with other docs this morning. My brain is frazzled but in a mostly good way. I’m going to focus on the good and just live and enjoy and appreciate and be thankful for my blessings. Thank you all so very much for the good juju. It means more than I can say ❤️ On a side note I arrived home just in time to save a young squirrel from my angel cat Hank who desperately wanted to play come hide in my mouth. I’ve decided to call him Oscar and have him a big box with blankets to hopefully recover in. Fingers crossed 🤞🏻