Gamma…gamma… gamma

Tomorrow is the day we leave to have gamma knife radiosurgery. So far I really like the nurses and the doctor is SO informative. He’s great (Vinai Gondi)

http://www.chicagoprotoncenter.com/explore-the-center/meet-our-care-team/meet-the-doctors#title-3

However he doesn’t mess around, he’s a straight shooter and tells you the truth on what could and couldn’t be. He isn’t a magician. But he is there for you and will answer any question you may have for him. I am ready to do this. I want to be “me” again. Feel real feelings again, remember things again, ( or at least try) Mostly being me is NOT giving up and trusting in the process of letting go and letting medicine work. And never letting go of the fact that GOD will get me through this.  Now I’m off to prop up my piggies  swollen due to dexo.  So, with that being said… Gamma… gamma… gamma!! 

https://www.nm.org/conditions-and-care-areas/treatments/gamma-knife-radiosurgery

Ready or not, here I come. Again.

What am I doing? I’ve lost it, I think. I have my chemo bag packed and ready to go. My new crocheted blanket my daughter made me, snacks and Propel… I feel like I’m pregnant! Yet it’s just preparing for a long 6-8 HR day in a chair that really isn’t that comfortable. There is music and really cool nurses. But that’s it. So, I’ll take my adult coloring book and my phone and yeah…. 

Tomorrow I have to take a large quantity of steroids to combat side effects from the three chemos I’ll be on. I thought the two steroids a day was bad. This quantity scares the shit out of me. There I said it. I’m scared. I hate this. I don’t want to, but I have to. I’m tired of waiting to get started again if that makes sense. I hate what it’s going to do to me, but I want this cancer to take a fu*÷ing leap. I’m tired of being afraid. Public bathrooms freak me out— what you don’t know how often they are cleaned and most of the time they stink and there is no tp!! Germs are GROSS!!! 

I do want to address the fact that I have the best friends anyone could ever have. Who make me laugh even when I’m falling apart. My daughter’s, Carol my love, Lisa my frousin, my mother, my tribe, Kim, Alicia, Rachel, and my sister Christal. You gals always​ keep me afloat. I couldn’t do any of this without you all behind me telling me to GO GO GO. And I am, I won’t give up. It’s just nice having someone in your corner. And I love you all. Each and every one of you in a different way. 💜 

So as I type this with tears streaming down my cheeks, I think of my girls and think of how unfair it is on them. They should NOT have a care in the world or have to worry or wonder what will happen next. It breaks my heart when I think if roles were reversed. I really don’t know who I would be, how I would react. But what I do know is that I’d give it to God. I’m not asking for a miracle. I’m just asking for more time to make more memories. And make sure he watches my girls. That’s all. 

*enough crying*  Anyway, bags are packed. My head is ready, I may not be in get up and go form, BUT I’ll be there. Chemo isn’t really that bad. If you have an awesome Dr. as I do they make sure you’re comfortable.  I just know and realize how bad my cancer is and know this is a lifetime thing. And that’s the part that sucks. 

See you Monday morning chair. This anchor will not sink. ⚓

 

 

Hello in there…

So its been a while since writing, BUT: for good reason! I have finished whole brain radiation. I have been back and forth to the oncologist, family doctor, kids appointments, (well, I don’t drive, they took that power away from me) in and out of the hospital and so on. I have been on Gilotrif -target therapy, for a little over two months but had to stop for brief moments due to side effects that I just couldn’t handle. Right now I am on a break until hopefully next Wednesday. However we know that it’s working because my tumors are shrinking! 

Now I’ll whisper about the hard parts. I am afraid. Who the hell wouldn’t be?  I often say to myself, Uh, Hello in there??  Stop whining!!   Every time I have a quiet moment, or time in the shower I cry. Why? because I don’t want to express it constantly in front of my girls. I told myself not to get close to the other patients this year because I lost two very special friends last year. They meant the world to me, but… as it turns I CAN’T NOT friend others. They are human, as am I. They ask questions about myself, and so on… they have beating hearts, And I want nothing but the best for them. Most of the time I turn sad faces into smiling faces… ESPECIALLY the older patients, its great. My nurses are beyond amazing, I don’t even have a word to describe them, and my doctors are the same. Right now I am so many things, sad, angry, nervous of tests coming up, BUT also, I am grateful. Because this “Cancer” stuff takes guts, strength, a pretty big fight, and maybe some humor!!  Above all of these things, it takes faith in God. 

I have faith that God has chosen for this path for me. And I truly believe that he will find a way, for not just me… but for ALL of us fighting the fight! 

 

Reality Check!

 

So after putting pieces back together, it has finally hit me, I don’t know why I wouldn’t let it or why I didn’t want to; but it has. I am SCARED. I hate feeling out of control, out of my mind, and afraid of what comes next. This in NO WAY means I am going to quit, it just means I am admitting I am human. I was trying to be the normal me and stay hard and tough and be strong.  But; I have normal, logical reasons to be scared out of my mind. I mean two days before I found out I had brain mets I was driving my girls around with their cousin watching Finding Dory and grabbing pizza and drinks, going to the park. It’s absolutely insanity they just are THERE out of nowhere. I never really gave myself and still haven’t given myself the chance to process it completely. It hurts, way deep down. Everyone keeps saying how strong I am or how “sorry” they are, and honestly I get it…. I wouldn’t know what to say either If I were them, but saying sorry to me isn’t working, you didn’t do this to me. and I am not the strongest person in the world, there are millions of men and women fighting just like me. And I am willing to bet they hate hearing “Im so sorry” too… 

Cancer is complicated. And it sucks, One day or one week things are fine and there is nothing going on in there, and then WHAM!!! Its ugly face is back again, in places you never wanted it to be. Not that anyone wants it to be anywhere, but you get my point.  I am just SO unbelievably angry and VERY scared. I just want to beat something up, and  tired of doctors offices and  tests and yada yada yada…. I feel lost most days because of the vertigo, I can’t drive anymore, I have  to be watched by someone at all times, feel like a 2-year-old , and my independence freedom and THAT alone puts me in a dark twisty place. Can I just go back in time to when I was a kid? Or maybe in Middle school? Because this isn’t cutting it for me.  Then reality does hit when I see my kids smile, or just walk in the door and say “Hi mom!” And watching them grow into adults, but even that hurts because I am afraid of how much longer that I have to be or see them. A wise person once said to me “be realistic, this will eventually get you, but, you will live to lets say 75ish and probably have to fight this beast more than once, but YOU are very resilient and So get to your appts and go for it!!”  

So in closing, I do plan on fighting the good fight but I am totally scared out of reality. But I will do this. No questions. And 75 might not be realistic to some, but it is MY GOAL. 

~Leanna Kay 

 

 

 

The Purple Haze of stage 4

  So to say the least the last three weeks of my life have been a complete blur. From taking a trip to the ER and being told I have not one,  but THREE tumors in my brain to my cancer is back and has metastasized and I now am in stage four of my disease and  having to relearn how to talk, think, walk sometimes, without falling… and even just get my memory back is difficult. I can’t describe what any of this feels like other than a tremendous fog…. stuck in my head, I want to remember so that I write and get it out of me and stop torturing myself with all of the what’s and whys…. This is all so scary and so angering!! So for now all I have is, July 11, 2016  I had a headache, I was dizzy and didn’t feel quite like myself, my partner saw that and took me immediately and it was confirmed that we were not off of our senses. I had to stay in the hospital overnight away from my two children and was very confused, still trying to accept or even hear the words tumors in the brain… couldn’t sleep, was in so much pain I couldn’t even see. I just wanted to sleep. I remember the doctors, the hospitalists, the nurses, the lights in my eyes, and the so many questions that continued to come. And then RIGHT after being discharged the day after, I started deep “whole brain radiation”

Hannibal Lecter said he loved my mask!

 – steroids, (to keep the brain from continuing to swell)- pain meds, all of it. UGH!!!!!! This is so NOT fair. Skipping along here,  I am currently sitting in my living room waiting for my daughter to tell me she loves me and to kiss me goodnight, and my other to say the same. This has been a nightmare. No one deserves this, babies, elderly, I don’t care who you are, you just don’t. But I have faith in my God, and in many friends and family still praying for me and my family. I just wish that while they say there is no cure….. the person who has it would just give it up already!!! Because I REALLY, STRONGLY believe there is a cure out there. And it upsets me that while my body has to go through radiation, and then the plan is chemotherapy again, I don’t want to. I should have had a choice. I want a cure, MY CURE!!!!! I want life.  With my girls, my family and whomever wants to hang out with me. 

 So with all of this being said, I hate my disease, but I will NEVER give up, or quit my fight. Why? Because of HOPE. Without it where would I be?  And because of my girls, they need me, my family loves me, my MOTHER!!!!! My sister Christal, who is trying very much so to regain what we have lost all these years fighting because of petty things.  My frousin Lisa, who I love with every fiber of my being, she is more like my sister than anything. ♥  A huge network of friends .. my TRIBE who completely surpasses the best of friendships around the states that all understand this situation more than anything. And I won’t give up because I made a promise to my dear friend Tracie. My God is a big man and he has me covered. I believe in that more than anything.  But, healthy fear is normal, And ya know while you are scared of a spider or a snake, I am a tad scared of tumors hanging out in my head. And possibly spreading to other organs. But I fought hard last summer and I will fight even HARDER this summer. Because I am NOT a quitter. And with everyone helping us, who is there to help support us, I thank you. Really. I thank you. From the bottom of my heart. Its hard to accept help sometimes, but in these times, its almost stupid not to accept. This has been a nightmare I never wanted to have or ever wake up to, that’s for sure. 

But I promise you this, I am thankful every single waking day that I open my eyes to the sunlight, and that I can still eat with my family, and that I can still go places… Because that’s just where i’ll be, Going places. For much longer to come. 

I . AM. A  SURVIVOR!     ANDTHISIZMYLIFE!!  

 

Hope & Believe

Without hope where would we be? Without love where would we be? Without friends where would we be? I ask you to just to think on this… Right now, I have hope. LOTS of it. I have love, & lots of friends, and I have a whole network of other friends battling the same things as I am. I have hope that at some point that there will be a cure, not only for lung cancer, but for ALL cancers. I can’t keep having these horrible days that take over me and I just want to cry in a corner and pity myself, its not a help; but a hindrance. I want anyone and everyone I know that there is such a peace with God if you let him in. If you pray, and give it all to him, he will take care of you. Now, I know that in my previous posts I cuss like a sailor, and I still do, but I believe in in God and I still fail, and I still sin; daily. 

As long as I can remember though, my mother would pray and tell me to pray when things got tough, and he would listen, and mostly, he always comes through. You just have to believe. And right now, I BELIEVE, and I HOPE. I have amazing doctors, and nurses who take great care of me and they take the best steps to making me better. Whether its what I want or not, I still go through what they suggest. Right now I am waiting on Pet Scan results. To be honest…… Am I afraid? Of course!!  However, having fear is healthy sometimes,  So I am trying to work on that part.  And just keep going, and while running into a lady in a gas station today who recognized me from my blog and my Facebook page also called  https://www.facebook.com/Andthisizmylife/?fref=nf my heart swelled really big and it gave me EVEN MORE hope to keep going and let go of the fear. She told me I was amazing, strong and that I was beautiful for going through what I had been though. And to BELIEVE that I was going to make it. And you know what? I am. And, Gloria, you touched me. Thank you. 

Tiny little boxes, space & one year later.

A year ago today I was in a hospital bed with several doctors around me. With a mound of papers with tiny little boxes to fill out.  I was clearly confused and didn’t want to stay, but they made me. I had to have a bronchoscope put down my nose and throat to rule out cancer.  That’s right; I went into the ER to get some medicine for what I thought was bronchitis, but they found a mass in my lungs instead and told me that I had pneumonia and that I needed several tests to find out what was going on with me. As I sit here today I think back to that night and just can’t even begin to explain the emotions that go along with it. The fear that has harbored down into me, the everyday stress of is it coming back, is it gone? As to the day after (because I get a little ahead of myself) It was confirmed I had stage 3A lung cancer, it had spread to my lymph nodes and I needed a good team to take care of me. Here we come Dr. Nancy DiMartino and staff!! Chemo and radiation x’s 32 rounds. It sucked. And even now, I am sick, I have what is known as radiation pneumonitis. It usually happens after radiation, but I kept a nasty cough after I was done and it never went away, turning into the reg kind of pneumonia. Then this nasty thing came along…. Anyhow, moving along… Every 3 months I have CT scans and blood work every 4-6 weeks along with port flushes, so you see I never get a break from cancer. I live and breathe cancer ever single waking day. I am afraid every day, I am nervous every day, I see my scars everyday, whether from my port, or my mastectomy… I cry almost every single time I take a shower because its loud and no one hears me pouring my heart out in there. Although my partner knows me, and gives me that space. 

A year ago today I was waiting on The Walking Dead to come on channel AMC and at the hospital they had it, but the nurse kept coming in and out taking my vitals, my phone wouldn’t pick up a signal and the regular telephone in the room was ringing off the hook. I laid in that bed petrified for the next morning, knowing what was seen on the CT and MRI I had the same night…. I just wanted to go home. I didn’t want to have to tell my kids.  I didn’t want to lose my hair or have to fill out a box on pprwork for the rest of my life that says “If you or someone in your family has cancer check here”  Now, I do. And its like a giant slap in the face. A year ago I wasn’t checking that box, it was left alone. And now my heart is ripped out EVERY time I look at it on paper. It just hurts.

 And I never got to see that damn episode of The Walking Dead. 😦  

Oh, and then there are those who are there and they try and understand it, or;  it or they dismiss it like its going to get better, or that you’re healed. (After chemo and rad) You are just miraculously saved. It doesn’t work that way. Its always there, lurking,  hiding somewhere. Cancer sucks. In fact I hate it with every fiber of my being. I wish I could move past it, let it just be. So I have it, who cares?? And just go on.. But its not that simple. I get winded easily, I’m tired, I want to sleep and I can’t. I want a cure. That’s all. 

But if you told me a year ago that I was going to be told when I left my house that morning I had cancer, I think I would have stayed home. Everything that comes with it is so consuming. I would rather have my life back, the happy one, without appointments constantly and filling in tiny little boxes that say “cancer”. Because for me, I think that had I NOT known, that was my normal life, just a cold, or bronchitis, I could deal with all that, just not this. And I have so many friends with cancer, Its NOT fair. I hate it. For them, for me. But what I don’t want anyone to get twisted is that fact that I won’t give up. Even though I hate it, I WON’T give up. Ever. Its not in me to roll over and play dead or whatever else my brain wants to do when its just spent. Emotionally I am a wreck, but I will keep going. Because a year ago, I thought I was just going in to have my chest looked at and it be a cold or bronchitis, now I know that its not and I have to fight. I have been put through the ringer since my diagnosis, and I keep going, my kids need me. My partner needs me,  My mom needs me. I need them, So I have some fighting to do. Just have to wipe the mascara off my face and keep going.  

 

 

A little bit of a control freak??

I finally turned to my therapist Kathy and just let it all out. That’s right, cried until my eyes swelled. And then came home and did it again with my partner.  I HATE feeling sadness all the time, anger or hurt. HATE it! I haven’t (I don’t think) fully came to terms with the fact or face of my cancer yet. I have said that I have, but in truth, I haven’t. So many have talked to me and said that I am a warrior and strong and courageous and such… but good lord! It is NOT that easy. But it is pretty easy to put on a fake smile and walk on. Talk on and get on with everyone all up in your space. Especially when that’s all you know. Sometimes you need a break, and no one gets it coming from the person who always wants to be the center of all of it, helping everyone out. I hate that I can’t now. Because of multiple things, lifting, fumes, being out of breath… I just want my life back the way it was before. It may have still been a madhouse, but it was MY madhouse and I controlled it. Now I feel I have no control of anything.

Control…. lets talk control. I feel like I have lost control of literally dressing myself to making food. Because those who love me want me to be safe and secure with my body. If its cold out and I want to get air, I can’t because my partner wants me to bundle up so that I don’t get pneumonia. Which I know is fair and understandable; it just bugs me that I don’t and can’t go out the way that I used to. She is only loving me and trying to help. And everything else just goes with it, same as the doctors telling me what to put into my body.  Anyone who knows me knows I want and craved control. Whether to make a grocery list and go to the store, or to make lists for the kids for school to have things done a certain way… and they are in high school! I am just a control freak! And with cancer, you have no control. Nurses, doctors, your kids, your friends, everyone who cares about you telling you what for and why. And its TOTALLY understandable! Just not acceptable I guess, (to me).  If I had it my way, I would have control of my cancer and it would never return, and die. Damnit, I am SO angry.

I guess its time to make another appointment with Kathy, because there are loads of things I could go on about. But she has a great listening ear. 😉 And I guess the point of all of this jumbled up mess is, don’t automatically think that since a person is out of chemo and radiation and into Remission that they are happy and ski-pity-do-dah just prancing around great. Because some aren’t. They are still really hurt, worried and very confused about their futures. And some need more processing time.

 

 

 

Room 9

Six months in remission, and I have to say that I feel pretty okay. Not 100%,  about 75%, but okay. Other than my trip to the ER that brought me to my knees in tears because of the dreadful room number. Who would have thunk that a number could make one just fall apart?? Room 9.  That’s where I got my diagnosis in March of last year and it’s weighed heavily on me since. The reason for my trip was pneumonia, in my right middle lobe and near my heart, and into my back. All the while I was just afraid of it being my lung cancer back again. Testing me, lying to me.  It won for a few short bursts, but it failed to be my cancer; its just pneumonia the doctor said to us. How relieving, but scary and painful. So now its back on bed rest, lots of fluids, medications and anger.

Anger because it never goes away…It just hides… The feeling of you never know. So much to think about when you’re coughing and hacking your lungs up. In pain, fever and everyone keeps saying, “its just a cough, don’t worry so much honey, that stuff will never come back”.

Well how the hell do they know?!?! It’s frustrating as heck to hear that all the time. No one knows!! I will live with this fear, (its normal I hear) for a long time. So tired of being told to move on, get past it, its over, you’re a survivor. Well, damnit; I can feel this way for as long as I want to and I would NEVER tell anyone with this disease to just move on…. Those words hurt. And no matter what you say back, whether it’s that you need a break at the holidays or you just don’t want to go out for the day you hear moans from the crowd.  I can feel this way until there is a fucking cure!! Leave me alone about how to feel and when to move on. I will talk about it, blog about it, advocate about it and you better believe that others understand the difference between the stigmas of it. For a VERY long time. 

And room 9… You suck. 😦

~Sincerely,
An angry woman with lung cancer

Scanxiety Sucks!

   Its that time again, scanxiety rises in my veins, plumping them up making me crazy. Making me nervous, its nothing like just your average xray or CT scan… its the type of anxiety that comes with is it back again, is it bigger? Is it or has it moved? Has it changed shape??… The list just grows and grows. And a person like me HATES it because not only do I have cancer I have BiPolar disorder and it just gets worse and worse for my mind… I mean, what the heck would I do if it came back? Well, I’ll tell you, I’d go back and do whatever they told me to do. And I’d keep fighting, BUT I would HATE every minute of it. This disease sucks ass. Literally. Chemo sucks. Its painful. Your bones hurt, you can’t go to the bathroom, your stomach hurts or you vomit, you can’t sleep but you’re tired. Actually you are so exhausted its ridiculous. You want to be left alone but you want people to visit, now does that make sense?? It does to me. Its dumb. Your hair falls out. Its itchy at first and then it just aborts ship. Main thing right now is fear. The fear is crushing, it consumes you. Far worse than any stupid fear you ever thought you had. Its awful. Cancer is the devil. Ive said it before and I’ll say it again. Its almost a special kind of torture on us… (as a VERY special Shannon would say) I just have to wait. Wait, wait, wait… Until then, lets ALL wait until November 19th, and then the 30th for my results. And PRAY that everything is still at bay.