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!
Saturday, March 3, 2018
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.
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.
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!
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 🙂
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.
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.
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 🤞🏻
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 🤞🏻
November 10, 2017
Today is my follow up CT Scan. As much as I am not looking forward to drinking more sugar goo and getting loaded with IV dye, I am very much hoping that when I meet with my doctor on Monday he will tell me that the past months have been worth the struggles and that the cancer has gone. I have been feeling much better although recently have been dealing with the aftermath of having a fentanyl patch and hydrocodone for all my pain. Stupid that the side effects of withdrawing from the meds is more pain and feeling like you’ve got a bad flu. I’m grateful I was on the lowest doses and was smart enough to ask to discontinue them as soon as possible. All of your good juju and thoughts are as always so very much appreciated
Today is my follow up CT Scan. As much as I am not looking forward to drinking more sugar goo and getting loaded with IV dye, I am very much hoping that when I meet with my doctor on Monday he will tell me that the past months have been worth the struggles and that the cancer has gone. I have been feeling much better although recently have been dealing with the aftermath of having a fentanyl patch and hydrocodone for all my pain. Stupid that the side effects of withdrawing from the meds is more pain and feeling like you’ve got a bad flu. I’m grateful I was on the lowest doses and was smart enough to ask to discontinue them as soon as possible. All of your good juju and thoughts are as always so very much appreciated
October 17, 2017
The past few days I’ve been feeling so much more like Jenn! While I still need little breaks, I’ve been cleaning and decorating and baking like I use to and enjoy so very much. It’s those little things that I now know aren’t so little that give me joy each and every day. I am so blessed to have such wonderful family, the sweetest, kindest most amazing children ever and friends that anyone would envy. Not smoking has really been a challenge for me, whoever invented cigarettes should really get a big kick in the arse. But, I am working hard to be stronger than the nicotine and look forward to the day when I don’t even think about it anymore. I am anxious for all of this to be behind me and enjoy life every single day. Love to you all for the continued support ❤️
October 2, 2017
Week 9- On the Mend
Week 8 was a whirlwind with Ashleigh and Terry here and our trip to Newport Beach. I didn't feel very well when Ashy first arrived and I felt really badly about that. But I was so very happy to see her, I hadn't since July. On Saturday we got to visit and then she, Terry and Brian went to Scare Night at Carowinds Amusement Park for the evening. The next day Mark and I spent the better part of the day on planes and in airports on our way to Newport Beach. Our bungalow at Pelican Hill Resort was amazing. We explored the area and went on a whale and dolphin watch. No whales but dozens of dolphins and they were beautiful to see. The beaches are not very easy to get to at all and we didn't find any that had many shells. Thus I've decided the Atlantic Ocean is my favorite. You walk right onto the beach and shells are all over. My new medicines were great as they allowed me the energy to explore and the ability to eat some really great food too. One of the new anti-nausea meds also allowed me to sleep through the night, and I've been so thankful for that. We got home around midnight on Thursday so we had all day Friday to spend with the kids. We took them to a driving range and a home decor store before a great dinner at Texas Roadhouse. I felt pretty good. I hated having to say goodbye though the next day when Ashy headed home. The visit wasn't nearly long enough and I am anxiously awaiting the next, hopefully Thanksgiving. My next appointment with my oncologist and to do re-staging of the tumor and scans isn't until the end of October. More waiting. They say they have to because my treatments continue to do battle for several weeks after I stop receiving them, but it's still really hard to just wait and wonder. Especially when we now live in a society where everything is about the right now. I want to know right now how am I. If I'm cured. If I'm better than I was. Or if I just wasted 2 months of precious time being sick for nothing. Because you see time waiting is time to wonder a whole lot of things. For now I'll focus on feeling stronger, hopefully growing some of my precious curly hair back and enjoying each day I am given. Oh, and continue my dream of someday owning a ranch on lots of land where I can be a sanctuary for rescue animals. I see myself doing that until I'm old and gray. That and visiting beaches and collecting shells with my precious family ❤️
Week 8 was a whirlwind with Ashleigh and Terry here and our trip to Newport Beach. I didn't feel very well when Ashy first arrived and I felt really badly about that. But I was so very happy to see her, I hadn't since July. On Saturday we got to visit and then she, Terry and Brian went to Scare Night at Carowinds Amusement Park for the evening. The next day Mark and I spent the better part of the day on planes and in airports on our way to Newport Beach. Our bungalow at Pelican Hill Resort was amazing. We explored the area and went on a whale and dolphin watch. No whales but dozens of dolphins and they were beautiful to see. The beaches are not very easy to get to at all and we didn't find any that had many shells. Thus I've decided the Atlantic Ocean is my favorite. You walk right onto the beach and shells are all over. My new medicines were great as they allowed me the energy to explore and the ability to eat some really great food too. One of the new anti-nausea meds also allowed me to sleep through the night, and I've been so thankful for that. We got home around midnight on Thursday so we had all day Friday to spend with the kids. We took them to a driving range and a home decor store before a great dinner at Texas Roadhouse. I felt pretty good. I hated having to say goodbye though the next day when Ashy headed home. The visit wasn't nearly long enough and I am anxiously awaiting the next, hopefully Thanksgiving. My next appointment with my oncologist and to do re-staging of the tumor and scans isn't until the end of October. More waiting. They say they have to because my treatments continue to do battle for several weeks after I stop receiving them, but it's still really hard to just wait and wonder. Especially when we now live in a society where everything is about the right now. I want to know right now how am I. If I'm cured. If I'm better than I was. Or if I just wasted 2 months of precious time being sick for nothing. Because you see time waiting is time to wonder a whole lot of things. For now I'll focus on feeling stronger, hopefully growing some of my precious curly hair back and enjoying each day I am given. Oh, and continue my dream of someday owning a ranch on lots of land where I can be a sanctuary for rescue animals. I see myself doing that until I'm old and gray. That and visiting beaches and collecting shells with my precious family ❤️
September 22, 2017- Week 7 Day 5 Chemo/Radiation- Finish Line
I just finished my final round of radiation and can now say that I've completed the entire regimen. WooHoo! I nearly didn't because after last weekend I didn't want to go back at all I hurt so bad. Thankfully and thanks to everyone's support and the helpful hands of another doctor (and person in my corner), my meds were changed for the better. I was very leery of adding anything more for fear of more side effects, but I put my faith and trust in her and she was right. I feel not great but a whole shit ton better and the meds didn't make me stupid or a zombie. When I finished chemo I chose not to ring the bell because I wasn't done yet and I felt that I needed to save the 3 rings for the real end. Today, I rang the bell 🔔 My sweet princess Ashleigh (and Terry!) will be arriving any time now to spend the week here in Charlotte. In 2 days I'll be on a plane with Mark headed to Pelican Hill Spa in Newport Beach California for a 4 day retreat. I could not dream of better rewards than these to celebrate the end of a very long, hard, tear-filled two months of battle. This time has easily been the biggest fight of my life. I'll still post as of course my journey is not over yet. I'll have to continue my care under the watchful eye of my phenomenal medical team and return for scans and labs and all that super fun not stuff. But for now and at least the next month I get break time to enjoy my life and live it to the fullest. I have always cherished my family and friends and blessings but it's a little different now. Deeper and even more true than I thought was possible. I'll continue to find beaches and adventures to add to my bucket list called life and I'll appreciate and adore every single second of it. Hugs and kisses will last a little longer and smiles will be treasured. Thank you every single one of you for the likes, loves, replies, words of encouragement and hope, cards, flowers and gifts. I cannot put into words just how much it all means because there just aren't words to appropriately convey my gratitude ❤️
I just finished my final round of radiation and can now say that I've completed the entire regimen. WooHoo! I nearly didn't because after last weekend I didn't want to go back at all I hurt so bad. Thankfully and thanks to everyone's support and the helpful hands of another doctor (and person in my corner), my meds were changed for the better. I was very leery of adding anything more for fear of more side effects, but I put my faith and trust in her and she was right. I feel not great but a whole shit ton better and the meds didn't make me stupid or a zombie. When I finished chemo I chose not to ring the bell because I wasn't done yet and I felt that I needed to save the 3 rings for the real end. Today, I rang the bell 🔔 My sweet princess Ashleigh (and Terry!) will be arriving any time now to spend the week here in Charlotte. In 2 days I'll be on a plane with Mark headed to Pelican Hill Spa in Newport Beach California for a 4 day retreat. I could not dream of better rewards than these to celebrate the end of a very long, hard, tear-filled two months of battle. This time has easily been the biggest fight of my life. I'll still post as of course my journey is not over yet. I'll have to continue my care under the watchful eye of my phenomenal medical team and return for scans and labs and all that super fun not stuff. But for now and at least the next month I get break time to enjoy my life and live it to the fullest. I have always cherished my family and friends and blessings but it's a little different now. Deeper and even more true than I thought was possible. I'll continue to find beaches and adventures to add to my bucket list called life and I'll appreciate and adore every single second of it. Hugs and kisses will last a little longer and smiles will be treasured. Thank you every single one of you for the likes, loves, replies, words of encouragement and hope, cards, flowers and gifts. I cannot put into words just how much it all means because there just aren't words to appropriately convey my gratitude ❤️
September 18, 2017- Week 7 Day 1 Chemo/Radiation- Pause
Well. This weekend sucked. Like really bad sucked. It's been the first time I truly struggled to be positive, and had to fight hard to not lose my shit. Well let's be honest, I lost my shit and had to fight really hard to regain it. I've had horrible throat and chest pain, on top of tired and achy, and then added vomiting to the list. This is the "really bad" that the radiologist was predicting and warned me of. They've been great about trying to help think of things to make it easier and keep me comfortable and I do appreciate it very much. At the same time the negative mean person in me says "sure you try all this and let me know how it works out". Thankfully I've almost reached the point where now I just need to recover from all of this. I am trying to be realistic and don't expect to just wake up all better, but would like to hope that toward the end of the week see some significant improvement. We've decided to have a short break so that should help. I guess I'm playing let's make a deal.. I can take the tired just please let me be able to swallow without feeling like I'm ripping in half, literally. Initially any time they asked me about pain I tried to compare it to child birth, because well what's worse? But if I'm being honest this is an entirely different pain. Hopefully still with a really nice prize at the end. I keep remembering what my Doug says and tell myself if this is tearing me apart surely it's ripping bastard cancers ass to shreds. My momma says if you've got nothing nice to say... I almost chose not to post at all since there's so much negative, but surely nobody thought this journey was going to be all sunshine and flowers. Oh! I had a craving for an Arby's Beef and Cheddar for dinner! That's positive 🙂 and if I can eat it I'll be over the moon with delight. Mark has been so great about making/getting anything I want even though we throw half of it or more away. Then he just smiles and goes and makes me something else until it works.
Well. This weekend sucked. Like really bad sucked. It's been the first time I truly struggled to be positive, and had to fight hard to not lose my shit. Well let's be honest, I lost my shit and had to fight really hard to regain it. I've had horrible throat and chest pain, on top of tired and achy, and then added vomiting to the list. This is the "really bad" that the radiologist was predicting and warned me of. They've been great about trying to help think of things to make it easier and keep me comfortable and I do appreciate it very much. At the same time the negative mean person in me says "sure you try all this and let me know how it works out". Thankfully I've almost reached the point where now I just need to recover from all of this. I am trying to be realistic and don't expect to just wake up all better, but would like to hope that toward the end of the week see some significant improvement. We've decided to have a short break so that should help. I guess I'm playing let's make a deal.. I can take the tired just please let me be able to swallow without feeling like I'm ripping in half, literally. Initially any time they asked me about pain I tried to compare it to child birth, because well what's worse? But if I'm being honest this is an entirely different pain. Hopefully still with a really nice prize at the end. I keep remembering what my Doug says and tell myself if this is tearing me apart surely it's ripping bastard cancers ass to shreds. My momma says if you've got nothing nice to say... I almost chose not to post at all since there's so much negative, but surely nobody thought this journey was going to be all sunshine and flowers. Oh! I had a craving for an Arby's Beef and Cheddar for dinner! That's positive 🙂 and if I can eat it I'll be over the moon with delight. Mark has been so great about making/getting anything I want even though we throw half of it or more away. Then he just smiles and goes and makes me something else until it works.
September 15, 2017- Week 6 Day 5 Chemo/Radiation- Getting Antsy
My last day of chemo went off without a hitch. My labs looked good so we finished the last round, and then took out the picc line. As planned I went home and hogged all the hot water 🙂 The past few days my throat and chest have been on fire with reflux and heartburn, to the point where even doubling the pain meds hasn't completely helped. It's very frustrating, but still, I'm thankful its not worse. The sleeping is where I am really struggling, and I can't seem to make it more than 45 minutes to an hour before waking up and being stuck awake. I will welcome a good night sleep when it arrives with open arms. After today I get the weekend off then have just 4 more days of radiation before I can say I am completely done with the treatment. I have all my fingers and toes crossed that my current experiences are the worst they will get and then I'll be on the mend. I have really high hopes for a lot of delicious food when we get to California without a big struggle. Oh, and sea shells 🐚 of course. I'll have to remember room to bring the beach back with me! I have some really beautiful Vera Bradley luggage to stockpile things in thanks to my loved ones ❤️ Also my mom and Doug got me a really beautiful wig of short crazy red hair that looks a lot like me. If I get brave I'll post a pic of it for y'all sometime. That's about it for now, I hope everyone has a wonderful weekend
My last day of chemo went off without a hitch. My labs looked good so we finished the last round, and then took out the picc line. As planned I went home and hogged all the hot water 🙂 The past few days my throat and chest have been on fire with reflux and heartburn, to the point where even doubling the pain meds hasn't completely helped. It's very frustrating, but still, I'm thankful its not worse. The sleeping is where I am really struggling, and I can't seem to make it more than 45 minutes to an hour before waking up and being stuck awake. I will welcome a good night sleep when it arrives with open arms. After today I get the weekend off then have just 4 more days of radiation before I can say I am completely done with the treatment. I have all my fingers and toes crossed that my current experiences are the worst they will get and then I'll be on the mend. I have really high hopes for a lot of delicious food when we get to California without a big struggle. Oh, and sea shells 🐚 of course. I'll have to remember room to bring the beach back with me! I have some really beautiful Vera Bradley luggage to stockpile things in thanks to my loved ones ❤️ Also my mom and Doug got me a really beautiful wig of short crazy red hair that looks a lot like me. If I get brave I'll post a pic of it for y'all sometime. That's about it for now, I hope everyone has a wonderful weekend
September 11, 2017- Week 6 Day 1 Chemo/Radiation- I Think I Can
My folks headed out on Saturday. It was a really nice week and I couldn't be happier about their visit. The timing was really good as I wasn't too beat down yet from starting chemo back up. Over the weekend I've been progressively more tired and I hate that. It's hard to accurately describe. My body is exhausted but also restless, and the physical feeling that leaves me with is frustrating. My skin hurts. I want to move and feel like I need to but then I nap for an hour. My throat has been much more angry with me the past few days. It's dry and I get like spasms randomly or when I eat or drink various degrees of food or drink. I've relied a lot more on the medicine which I don't really like but it is what it is. I am still so thankful that it does not hurt to swallow. I've had a very hardy appetite so my weight is hanging in there. I swear I'm eating more than I normally do but hey that's a good thing! We've started to sort through some fall decorations, and in a couple two three weeks we will get out Halloween stuff! I do love decorating as it changes the whole look and feel of the house, and there's just something about fall colors that's so comforting. I feel like I should move whenever I feel up to it because while resting is great I think too much just makes me more sore? Like in my joints. At the same time boy am I grateful that I don't "have" to be anywhere beside treatment. There are moments when I'm not sure I could walk down the hall if I needed. I also know this could all be so much worse so I'm thankful that I am managing okay. I feel lucky to get little breaks in between feeling blah. Just enough to remind me I can do this 🙂 And its pretty easy to do with all my amazing wonderful people in my corner fighting with me and pushing me forward. Today is going to be my final chemo treatment and when it's finished my picc line is coming out. After the obligatory apply pressure and dressing it is my every intention to go home and sit in the shower until I've used every ounce of hot water in the house. If all runs similar to before I'm in for about another week to 10 days of blah followed by progressively stronger. By then I'll be at the end of radiation. I can do this...
My folks headed out on Saturday. It was a really nice week and I couldn't be happier about their visit. The timing was really good as I wasn't too beat down yet from starting chemo back up. Over the weekend I've been progressively more tired and I hate that. It's hard to accurately describe. My body is exhausted but also restless, and the physical feeling that leaves me with is frustrating. My skin hurts. I want to move and feel like I need to but then I nap for an hour. My throat has been much more angry with me the past few days. It's dry and I get like spasms randomly or when I eat or drink various degrees of food or drink. I've relied a lot more on the medicine which I don't really like but it is what it is. I am still so thankful that it does not hurt to swallow. I've had a very hardy appetite so my weight is hanging in there. I swear I'm eating more than I normally do but hey that's a good thing! We've started to sort through some fall decorations, and in a couple two three weeks we will get out Halloween stuff! I do love decorating as it changes the whole look and feel of the house, and there's just something about fall colors that's so comforting. I feel like I should move whenever I feel up to it because while resting is great I think too much just makes me more sore? Like in my joints. At the same time boy am I grateful that I don't "have" to be anywhere beside treatment. There are moments when I'm not sure I could walk down the hall if I needed. I also know this could all be so much worse so I'm thankful that I am managing okay. I feel lucky to get little breaks in between feeling blah. Just enough to remind me I can do this 🙂 And its pretty easy to do with all my amazing wonderful people in my corner fighting with me and pushing me forward. Today is going to be my final chemo treatment and when it's finished my picc line is coming out. After the obligatory apply pressure and dressing it is my every intention to go home and sit in the shower until I've used every ounce of hot water in the house. If all runs similar to before I'm in for about another week to 10 days of blah followed by progressively stronger. By then I'll be at the end of radiation. I can do this...
September 8, 2017- Week 5 Day 5 Chemo/Radiation
Still Plugging Along I can see a light at the end of the chemo tunnel. I have today and Monday (barring that mother effing hurricane doesn't mess it up) then chemo is over, and this lovely double 18guage picc line comes out! It will be a happy day, and I can't wait to take fully submerged baths and showers! I met with my radiologist who remains pleased with my progress. I have 10 more sessions of radiation before I can also call that done. The countdowns have definitely begun though. Oh, and this check up I gained a pound back, WooHoo 🙌. The day after radiation ends my sweet princess Ashleigh and her prince Terry will arrive to have a nice week long vacation. I will be away for part of it in Newport Beach California with Mark for his annual work trip. On one hand I don't want to miss days with her but on the other hand missing days means that I am feeling good enough to travel and have a little getaway. My bucket list is beaches 🌊. As many beaches as I can visit to place my feet in the sand and collect a few shells. I've never been to the west coast so my desire to meet this goal of being strong enough to go is high indeed. All I have to do is make it through the plane rides and airports. Then my only job will be lay my ass in a recliner on my patio or the beach and enjoy, so everyone, please say an extra little prayer for me that I can do this! So about this week. Last night I started feeling the familiar twinge of exhaustion starting to weasel it's way in. I accepted it and laid down about 7:30 for a power nap. I figure since my new thing is to be wide awake from 1:45-4ish I'll just go with what's working. Well, I'll go with the new reality of my life. I sleep when I'm tired and I get up and find something to do when I'm not. Not like out of the bed of course in the middle of the night but I read or pet any one of the cats gracing my presence (there is always always at least one available) or watch silly videos. It's all good. The heartburn from radiation seems to be pushing its way back into the forefront. I just tell myself it's not as bad as childbirth. And since I'm not sure anything is as bad as childbirth I figure this mantra will work for the foreseeable future. Today is my birthday, I'm looking forward to spending it with Mark, my sweet boy and my unequivocally amazing parents. It sucks no break from treatment but it is what it is. I did get a break on Labor Day so I'll just pretend that was an early present. Speaking of presents my sweet mother has been making sure I have one every single day since she arrived this past Saturday. I love presents. But more than that I love her strength and her unwavering ability to be so very strong for me. I know if it were one of my babies I'd be a wreck. And I bet she is too, but she's done an excellent job of hiding it from me and for that I need to thank her. She has helped me to be strong, by pushing and reminding me that I am strong. And she has coddled me just enough to be a perfect blend of exactly what I need right now. Doug has been my moms rock and I can't thank him enough for making sure she could be with me. Brian has stepped up for me in a way that no son should have to ever.. And Mark, I still can't say enough about him or find words worthy of how much he does for me and means to me. I seriously would have lost my shit by now if it wasn't for him. He is my rock, and my family's as well. He's our glue. I don't know how he does it. I look forward to the day I can return the strength. That's all for now, see you on Monday!
Still Plugging Along I can see a light at the end of the chemo tunnel. I have today and Monday (barring that mother effing hurricane doesn't mess it up) then chemo is over, and this lovely double 18guage picc line comes out! It will be a happy day, and I can't wait to take fully submerged baths and showers! I met with my radiologist who remains pleased with my progress. I have 10 more sessions of radiation before I can also call that done. The countdowns have definitely begun though. Oh, and this check up I gained a pound back, WooHoo 🙌. The day after radiation ends my sweet princess Ashleigh and her prince Terry will arrive to have a nice week long vacation. I will be away for part of it in Newport Beach California with Mark for his annual work trip. On one hand I don't want to miss days with her but on the other hand missing days means that I am feeling good enough to travel and have a little getaway. My bucket list is beaches 🌊. As many beaches as I can visit to place my feet in the sand and collect a few shells. I've never been to the west coast so my desire to meet this goal of being strong enough to go is high indeed. All I have to do is make it through the plane rides and airports. Then my only job will be lay my ass in a recliner on my patio or the beach and enjoy, so everyone, please say an extra little prayer for me that I can do this! So about this week. Last night I started feeling the familiar twinge of exhaustion starting to weasel it's way in. I accepted it and laid down about 7:30 for a power nap. I figure since my new thing is to be wide awake from 1:45-4ish I'll just go with what's working. Well, I'll go with the new reality of my life. I sleep when I'm tired and I get up and find something to do when I'm not. Not like out of the bed of course in the middle of the night but I read or pet any one of the cats gracing my presence (there is always always at least one available) or watch silly videos. It's all good. The heartburn from radiation seems to be pushing its way back into the forefront. I just tell myself it's not as bad as childbirth. And since I'm not sure anything is as bad as childbirth I figure this mantra will work for the foreseeable future. Today is my birthday, I'm looking forward to spending it with Mark, my sweet boy and my unequivocally amazing parents. It sucks no break from treatment but it is what it is. I did get a break on Labor Day so I'll just pretend that was an early present. Speaking of presents my sweet mother has been making sure I have one every single day since she arrived this past Saturday. I love presents. But more than that I love her strength and her unwavering ability to be so very strong for me. I know if it were one of my babies I'd be a wreck. And I bet she is too, but she's done an excellent job of hiding it from me and for that I need to thank her. She has helped me to be strong, by pushing and reminding me that I am strong. And she has coddled me just enough to be a perfect blend of exactly what I need right now. Doug has been my moms rock and I can't thank him enough for making sure she could be with me. Brian has stepped up for me in a way that no son should have to ever.. And Mark, I still can't say enough about him or find words worthy of how much he does for me and means to me. I seriously would have lost my shit by now if it wasn't for him. He is my rock, and my family's as well. He's our glue. I don't know how he does it. I look forward to the day I can return the strength. That's all for now, see you on Monday!
September 5, 2017- Week 5 Day 1-Chemo/Radiation
Starting the Week with Fighting Gloves On This entry will only have one complaint. My knees hurt. But alas, I think I'm just getting old. Ha ha. Anyway, in case you didn't notice all my other posts my folks are here! They came in time for dinner Saturday and are staying through Saturday. Then they'll be getting the heck outta dodge before hurricane Irma remnants hit the fan. They're going to celebrate my birthday with me, and my mom will be going with me to treatments for the rest of the week. So today was my long day of treatment and the nasty chemo. As if some chemo meds are nice? Whatthefuckever. Anyway, I arrived first for radiation at 7:55 and was at chemo by 8:25, and finished up lots of bags of stuff around 3:00ish. The rest of the week radiation and chemo combined will only be about 3 hours total. I know that as the week goes on I will become more tired and blah but I'm focused on the right now right now. It's my last full week of chemo, then one more long day then done! My folks and kids and Mark have been giving me a couple presents every day for my birthday since Saturday. I've been feeling quite special and loved. I should've asked for a cap for my bald head that looks like or is built into a tiara. 👑 Seriously though, as much as I looove presents, just having them all here with me has been the best present I could ever ask for, and the best medicine for me right now. In just 17 days my sweet princess will be here for a visit as well and I'm counting that down as well. I don't care if I sound like a dork but love your people people! It doesn't matter what you have, how much you have, how smart you are, if you're a rockstar EMT (ahem yep thanks), or anything else. When shit gets real it's only your people who you need and can really carry you through. So that's it for this entry, see y'all on Day 5!
Starting the Week with Fighting Gloves On This entry will only have one complaint. My knees hurt. But alas, I think I'm just getting old. Ha ha. Anyway, in case you didn't notice all my other posts my folks are here! They came in time for dinner Saturday and are staying through Saturday. Then they'll be getting the heck outta dodge before hurricane Irma remnants hit the fan. They're going to celebrate my birthday with me, and my mom will be going with me to treatments for the rest of the week. So today was my long day of treatment and the nasty chemo. As if some chemo meds are nice? Whatthefuckever. Anyway, I arrived first for radiation at 7:55 and was at chemo by 8:25, and finished up lots of bags of stuff around 3:00ish. The rest of the week radiation and chemo combined will only be about 3 hours total. I know that as the week goes on I will become more tired and blah but I'm focused on the right now right now. It's my last full week of chemo, then one more long day then done! My folks and kids and Mark have been giving me a couple presents every day for my birthday since Saturday. I've been feeling quite special and loved. I should've asked for a cap for my bald head that looks like or is built into a tiara. 👑 Seriously though, as much as I looove presents, just having them all here with me has been the best present I could ever ask for, and the best medicine for me right now. In just 17 days my sweet princess will be here for a visit as well and I'm counting that down as well. I don't care if I sound like a dork but love your people people! It doesn't matter what you have, how much you have, how smart you are, if you're a rockstar EMT (ahem yep thanks), or anything else. When shit gets real it's only your people who you need and can really carry you through. So that's it for this entry, see y'all on Day 5!
September 1, 2017- Week 4 Day 5 Chemo/Radiation -Mini Reprieve
For the most part this week was better just like the doctor said it would be. I'm trying to focus on this little break and not think about the part where he said "and then it'll get worse again". I've struggled some with nausea and one day really kind of sucked in that department but I haven't been as dog tired as I was. I still needed some naps but haven't felt like I just needed to lay down all the time. I even have had some bursts of energy and been able to do some laundry and clean a bathroom or sweep a floor. Y'all know what a clean freak I am so it was truly satisfying to be able to contribute a little bit again. My momma and Doug will be here tomorrow evening and will stay through the week and help me celebrate my birthday. We'll be having thanksgiving dinner of course. They will also be here for just about all of my final round of chemotherapy. I'm so glad they missed the hairs falling out part because my mood was less than cheery 😳 I don't know exactly how I'll be feeling since this is the second round as well as getting further into radiation but I'm hoping to be able to maybe play a couple family games and just hang out comfortably and visit. But either way I know that they don't care what I can or can't do and we'll all just be thankful for being together. Today I complete my 20th radiation, putting me well over the halfway mark. Just 13 left now. I feel like the little engine that could sometimes. I've had some moments for sure when I needed a little kick in the ass to remember that I am the storm. I lost a couple more pounds and was encouraged to eat anything and everything I'd like. Oh the irony... 🍟🍗🎂🍩 Although I cannot have any alcohol and even though I'm the gal that has maybe 20 drinks in a whole year... what I wouldn't give for a Jack & Coke right now 🥃 Next week I'll have chemo every day with Tuesday being the stupid long day. On Monday September 11th one more stupid long day but also the last day. This is extra awesome because it's also, I believe, the day the picc line comes out and man let me say that I am counting down for that! Mostly it's not hurting anymore and the irritation from the tape has been minimal after trying yet another form of tegaderm, but it's just terribly annoying and inconvenient for doing pretty much everything including sleeping comfortably. I'll still have another 8 days of radiation and may feel like crap but I'll remind myself at least I'm tap free then!
For the most part this week was better just like the doctor said it would be. I'm trying to focus on this little break and not think about the part where he said "and then it'll get worse again". I've struggled some with nausea and one day really kind of sucked in that department but I haven't been as dog tired as I was. I still needed some naps but haven't felt like I just needed to lay down all the time. I even have had some bursts of energy and been able to do some laundry and clean a bathroom or sweep a floor. Y'all know what a clean freak I am so it was truly satisfying to be able to contribute a little bit again. My momma and Doug will be here tomorrow evening and will stay through the week and help me celebrate my birthday. We'll be having thanksgiving dinner of course. They will also be here for just about all of my final round of chemotherapy. I'm so glad they missed the hairs falling out part because my mood was less than cheery 😳 I don't know exactly how I'll be feeling since this is the second round as well as getting further into radiation but I'm hoping to be able to maybe play a couple family games and just hang out comfortably and visit. But either way I know that they don't care what I can or can't do and we'll all just be thankful for being together. Today I complete my 20th radiation, putting me well over the halfway mark. Just 13 left now. I feel like the little engine that could sometimes. I've had some moments for sure when I needed a little kick in the ass to remember that I am the storm. I lost a couple more pounds and was encouraged to eat anything and everything I'd like. Oh the irony... 🍟🍗🎂🍩 Although I cannot have any alcohol and even though I'm the gal that has maybe 20 drinks in a whole year... what I wouldn't give for a Jack & Coke right now 🥃 Next week I'll have chemo every day with Tuesday being the stupid long day. On Monday September 11th one more stupid long day but also the last day. This is extra awesome because it's also, I believe, the day the picc line comes out and man let me say that I am counting down for that! Mostly it's not hurting anymore and the irritation from the tape has been minimal after trying yet another form of tegaderm, but it's just terribly annoying and inconvenient for doing pretty much everything including sleeping comfortably. I'll still have another 8 days of radiation and may feel like crap but I'll remind myself at least I'm tap free then!
August 25, 2017- Week 3 Chemo/Radiation Day 5- Dark to Light
Earlier this week I noticed my scalp was really sensitive and within hours (literally) my hairs started falling out. It physically hurt so bad trying to wash it brought me to tears (one would think at this point tear-wise my body would be out. My amazement and admiration for the anatomy of the human body and eyeball in particular has no end). Emotionally this point has been a real low... The very next day it seemed like I couldn't stop throwing up. And of course I still have to go to radiation during this. Again more Kudos to my "people" for really being great. I mean I know that this is the crap they deal with every day and so they're use to it. But that's kind of exactly my point. People get jaded with time. Desensitized. Any of my fire/EMS friends know this. And yet not a single one of these people shows that. At least not an inkling outwardly whereas I picked up on it. So, job outstandingly done, because it takes a really special person who can do what they do every single day and still appear fresh and sweet and kind and empathetic. Anyway, by yesterday I was just plain down. I'm tired. And I'm sick of being tired. And I'm already tired of being sick. And for crying out loud I didn't even know I was sick, and didn't feel sick, until someone told me I was. Like how? It boggles me; I felt pretty good and was living life and pretty much enjoying every second of it. Then a person told me I'm sick, very sick, and in order to get better, I need to do things to my body that will make me sicker and weaker than I've ever been. So I went from I felt good, to intentionally putting chemicals and radiation into my body, literally making myself ill and tired and hurt and argh. So I can get better from this invisible monster inside me that I never knew was there... Mind = boggled. Then, just overnight as I started my now normal, mid night/early dawn hours of tossing, I thought to myself hmm... I think I just might feel just a little tiny bit better than I did when I went to sleep. I seriously kind of brushed it off and continued my dozing until morning because I was afraid to jinx the feeling. Even after waking and still feeling pretty okay I was leery of mentioning it to my momma. Especially since this morning was my appointment with my medical oncologist for the mid-way checkup. Then! It went really well. He said he's pleased with my lab work. My white count is a little low but "that number still means risk of infection is trivial" He said that the next week or two I should feel better chemo wise, but that my pain and trouble swallowing from the radiation will likely get worse. I guess if I can stick with just a couple yucks at a time I'll absolutely take what I can get right? Hell freaking yes I will. And while I may not be "enjoying" every second of life right now I'm sure as shit appreciating every single second, and person I love and adore ❤️
Earlier this week I noticed my scalp was really sensitive and within hours (literally) my hairs started falling out. It physically hurt so bad trying to wash it brought me to tears (one would think at this point tear-wise my body would be out. My amazement and admiration for the anatomy of the human body and eyeball in particular has no end). Emotionally this point has been a real low... The very next day it seemed like I couldn't stop throwing up. And of course I still have to go to radiation during this. Again more Kudos to my "people" for really being great. I mean I know that this is the crap they deal with every day and so they're use to it. But that's kind of exactly my point. People get jaded with time. Desensitized. Any of my fire/EMS friends know this. And yet not a single one of these people shows that. At least not an inkling outwardly whereas I picked up on it. So, job outstandingly done, because it takes a really special person who can do what they do every single day and still appear fresh and sweet and kind and empathetic. Anyway, by yesterday I was just plain down. I'm tired. And I'm sick of being tired. And I'm already tired of being sick. And for crying out loud I didn't even know I was sick, and didn't feel sick, until someone told me I was. Like how? It boggles me; I felt pretty good and was living life and pretty much enjoying every second of it. Then a person told me I'm sick, very sick, and in order to get better, I need to do things to my body that will make me sicker and weaker than I've ever been. So I went from I felt good, to intentionally putting chemicals and radiation into my body, literally making myself ill and tired and hurt and argh. So I can get better from this invisible monster inside me that I never knew was there... Mind = boggled. Then, just overnight as I started my now normal, mid night/early dawn hours of tossing, I thought to myself hmm... I think I just might feel just a little tiny bit better than I did when I went to sleep. I seriously kind of brushed it off and continued my dozing until morning because I was afraid to jinx the feeling. Even after waking and still feeling pretty okay I was leery of mentioning it to my momma. Especially since this morning was my appointment with my medical oncologist for the mid-way checkup. Then! It went really well. He said he's pleased with my lab work. My white count is a little low but "that number still means risk of infection is trivial" He said that the next week or two I should feel better chemo wise, but that my pain and trouble swallowing from the radiation will likely get worse. I guess if I can stick with just a couple yucks at a time I'll absolutely take what I can get right? Hell freaking yes I will. And while I may not be "enjoying" every second of life right now I'm sure as shit appreciating every single second, and person I love and adore ❤️
August 20, 2017- Week 3 Day 1.
Today was suppose to be radiation followed by no chemo but go get my picc cleaned, ports changed and fresh wrap. Every single person I meet I still say are so kind and "gentle". The boss of radiation was working today, and he happens to be a man. I'm a prude patient who's very protective of her ta-tas and he was really super respectful and now he's one of my "people". Next the picc line. Funny (not really) a person who has seen a lot of blood and guts and done blood draws and all this fun stuff is so ridiculously skeeved out when it comes to my own parts and veins etc. The fact that there are two 18 gauge catheters running into my arm, stitched there, and thread right around to my precious heart makes me 😳😱, but alas, beats the hell out of getting poked over and over. I know me, and I'd hurt someone, with my little pink taser. Anyway, I've struggled with the adhesives and extreme sensitivities my skin has to it. So I can't usually make it more than a few days without needing the whole thing changed or else I'd probably rip my own arm off. Another of "my people" did his thing and tried his best to use something different and maybe make me more comfortable. Unfortunately by the time we even got home I was distraught. The way it was taped was actually pushing the end of one of my sutures back into my arm and the whole thing was making me crazy. Between me, my quirks, all the meds and they're lovely side effects, hormones, oh, and cancer, I literally just fell apart. I was a sobbing whining mess. When I tell you Mark has been my hero I'm not exaggerating. He has been a rock and I can't say enough great things about him. He swoops in and takes care of me, whatever the issue is, and then me again. I really never thought I'd have a person that I would completely trust myself with at such a deep level, someone I'd allow to see me in such a vulnerable state. Now I know why he was brought into my life. I would need him more than I could ever know at the time. Anyway, after my day and conniption and a good nap I woke up to discover another fresh flower delivery from my momma, who must just know in her heart when I need a little extra smile. I love my people
Today was suppose to be radiation followed by no chemo but go get my picc cleaned, ports changed and fresh wrap. Every single person I meet I still say are so kind and "gentle". The boss of radiation was working today, and he happens to be a man. I'm a prude patient who's very protective of her ta-tas and he was really super respectful and now he's one of my "people". Next the picc line. Funny (not really) a person who has seen a lot of blood and guts and done blood draws and all this fun stuff is so ridiculously skeeved out when it comes to my own parts and veins etc. The fact that there are two 18 gauge catheters running into my arm, stitched there, and thread right around to my precious heart makes me 😳😱, but alas, beats the hell out of getting poked over and over. I know me, and I'd hurt someone, with my little pink taser. Anyway, I've struggled with the adhesives and extreme sensitivities my skin has to it. So I can't usually make it more than a few days without needing the whole thing changed or else I'd probably rip my own arm off. Another of "my people" did his thing and tried his best to use something different and maybe make me more comfortable. Unfortunately by the time we even got home I was distraught. The way it was taped was actually pushing the end of one of my sutures back into my arm and the whole thing was making me crazy. Between me, my quirks, all the meds and they're lovely side effects, hormones, oh, and cancer, I literally just fell apart. I was a sobbing whining mess. When I tell you Mark has been my hero I'm not exaggerating. He has been a rock and I can't say enough great things about him. He swoops in and takes care of me, whatever the issue is, and then me again. I really never thought I'd have a person that I would completely trust myself with at such a deep level, someone I'd allow to see me in such a vulnerable state. Now I know why he was brought into my life. I would need him more than I could ever know at the time. Anyway, after my day and conniption and a good nap I woke up to discover another fresh flower delivery from my momma, who must just know in her heart when I need a little extra smile. I love my people
August 14, 2017- Week 2 Chemo Day One
Starts with Mark coercing me out of bed with the promise of a Carnation Chocolate Instant Shake. Yes, they really are that good. 8:15 begins with early lab draws to make make sure that me, my blood, my meds and my cancer are all on the same page in the "kill this bastard" protocol we have selected. All set so on with the show; about 5 ish hours of chemo meds and various meds to help the chemo do more good than harm. We adore all my aides, nurses and docs and present them with a red headed yeti looking cancer killings monster and several ginormous chocolate chip cookies that I'd really like Mark to prepare more of. One sweet nurse changes out my picc line dressing and cleans it with utmost care and tenderness, appreciating the fact that my skin underneath is already raw and sore. I hope she took an extra cookie. I must have been really tired, anyone who knows me knows I don't nap, because I napped, in front of people for so long that when I woke up I only had like 2 hours to go. I've nearly figured out as well how to time my urgency to pee with the changing of the picc tubes. I got texts from my momma, aunt, uncle, princess and buddy all to say hello. Brian nearly caught a shark his first time fishing. God I love that boy. I doodled in my journals while admiring Mark hard at work. And I arrived home to another handwritten happy tear filled note. And yes, you bet your stars that I will be feeding those seagulls again very soon ❤️
Starts with Mark coercing me out of bed with the promise of a Carnation Chocolate Instant Shake. Yes, they really are that good. 8:15 begins with early lab draws to make make sure that me, my blood, my meds and my cancer are all on the same page in the "kill this bastard" protocol we have selected. All set so on with the show; about 5 ish hours of chemo meds and various meds to help the chemo do more good than harm. We adore all my aides, nurses and docs and present them with a red headed yeti looking cancer killings monster and several ginormous chocolate chip cookies that I'd really like Mark to prepare more of. One sweet nurse changes out my picc line dressing and cleans it with utmost care and tenderness, appreciating the fact that my skin underneath is already raw and sore. I hope she took an extra cookie. I must have been really tired, anyone who knows me knows I don't nap, because I napped, in front of people for so long that when I woke up I only had like 2 hours to go. I've nearly figured out as well how to time my urgency to pee with the changing of the picc tubes. I got texts from my momma, aunt, uncle, princess and buddy all to say hello. Brian nearly caught a shark his first time fishing. God I love that boy. I doodled in my journals while admiring Mark hard at work. And I arrived home to another handwritten happy tear filled note. And yes, you bet your stars that I will be feeding those seagulls again very soon ❤️
August 10, 2017- Day Four of double chemo/radiation.
Today I feel just a little crappy. Well, border-lining on a lot crappy. My body aches a little sharper and differently than any other ache I can explain, and I am tired in a deeper to my core way than I am familiar with. But, alas, at this very moment the thing bothering me the very most is the lovely hole from which two 18 gauge catheters protrude from a hole in my arm in the form of a picc line. So, I'll take it. And be thankful that at this moment that is my biggest gripe. Oh, and today when I got home I received another great gift from my momma Ellen and papa Doug. A big fluffy blanket to bring with me to treatments. Big step up from those lovely linen blankets that have holes and smell like an operating room 😳
Today I feel just a little crappy. Well, border-lining on a lot crappy. My body aches a little sharper and differently than any other ache I can explain, and I am tired in a deeper to my core way than I am familiar with. But, alas, at this very moment the thing bothering me the very most is the lovely hole from which two 18 gauge catheters protrude from a hole in my arm in the form of a picc line. So, I'll take it. And be thankful that at this moment that is my biggest gripe. Oh, and today when I got home I received another great gift from my momma Ellen and papa Doug. A big fluffy blanket to bring with me to treatments. Big step up from those lovely linen blankets that have holes and smell like an operating room 😳
August 7, 2017
I came home just now from a very long day that was both physically and emotionally draining. Seven hours of chemotherapy plus various meds followed by about half an hour of radiation. The entire time Mark was by my side, helping me get comfy, getting me food, adjusting my blankets and unplugging my machine each of the four hundred times I had to go pee. Then, I got home to a gorgeous year round flowering plant from my mom Ellen and Doug and absolutely beautiful Vera Bradley bags from my angel Ashleigh that I can put all my things in to bring with me to my appointments. I also received a handwritten note from my momma. Every single thing was cherished with happy tears. I can never thank any of you enough ❤️
I came home just now from a very long day that was both physically and emotionally draining. Seven hours of chemotherapy plus various meds followed by about half an hour of radiation. The entire time Mark was by my side, helping me get comfy, getting me food, adjusting my blankets and unplugging my machine each of the four hundred times I had to go pee. Then, I got home to a gorgeous year round flowering plant from my mom Ellen and Doug and absolutely beautiful Vera Bradley bags from my angel Ashleigh that I can put all my things in to bring with me to my appointments. I also received a handwritten note from my momma. Every single thing was cherished with happy tears. I can never thank any of you enough ❤️
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 very sick person. My diagnosis came on July 21. On July 26th I shared the news with my world.
"I'm not one to post a whole bunch on Facebook, especially very personal things. I am private and introverted and okay with it. But you are all my friends and I could use some help. I've been diagnosed with a stage 3 cancer and begin an aggressive treatment August 7. I would like to ask my friends and family to think happy thoughts and send good juju while I kick this bastards ass".
I am 43 years old, pretty young when it comes to a lung cancer diagnosis. As a smoker I couldn't be in complete shock, but of course I really thought that this is what happens when you're a lot older, having smoked a lot more than I did and for a lot longer.
My entire life I have been witness to or experienced some pretty bad shit, both personally and professionally. I worked as an emergency medical technician for almost 20 years and have seen more than my share of amazing, horrifying, heartbreaking... Personally I can say the same, bad things just seem to hang around me. Hence my EMS nickname, Black Cloud. But through all of this, the bad loomed around me This... cancer, is now happening to me. I am use to dealing with near me, close to me, not actually me.
So, here I am, and I invite you to share my journey. In return I will share as best I can.
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