The Final Goodbye…

It has been a while since the last blog, so I figured that it would be good to update everyone. For all those who have kept up with this blog and have been there since the start, I would like to thank all for the prayers and wishes that have been sent along.

You may be wondering who this is, so I’ll introduce myself: Hi, my name is Rileigh, and I’m the youngest one of my Mom’s daughter’s. In a few of her blog posts, she mentioned my sister and I, so you may know who I am. I recently turned 18 and my sister just turned 20.

My Mom’s journey was full of ups and downs, but no matter what she never stopped fighting, and she never stopped loving. Even if she was tired, she still had that spunk! Even when she was at her toughest time, she never let it drag her down. Today we are all left with memories of her, some good, some bad, but no matter what we all still loved her.

Sometimes, when you say goodbye, you know that the next day you’ll see that person again, but other times it will be the last goodbye you’ll ever say to a person. No matter what, goodbyes will always be the hardest.

My last goodbye to you was on January 6th, 2019.  Now you’re in heaven, and even though you’re not in any pain anymore, it’s still hard to grasp the fact that you’re really gone. There hasn’t been a single day since that I haven’t thought about you, with several things left unsaid along with several questions left unanswered. I often catch myself thinking of you and wishing that I could give you one last hug and be able to tell you about my day and be able to listen to you tell me about yours. I miss you Mom, and so do many others. So many prayers have been sent to our family, and we have been nothing but blessed.

On January 6th, 2019, you took your final breath, but you’ll never be fully gone. I know you visit us sometimes, and like people say, loved ones are never fully gone because they will always be with you in memories and in your heart. So this is my last goodbye here, but I know it won’t be my last.

Goodbye, Mom, I love you.

 

Suck it, Cancer.

So it’s been a while. Okay Maybe a long while. I was really busy having my brain opened up while I was awake to grab a tumor out. I had a craniectomy. It was fierce. Did I mention I was awake!?! If I had not had this procedure done I probably would have died. it was super scary. My neurosurgeon let me see my tumor and also because I’m a whiner bought me a Diet Coke afterwards. He is awesome. I also had a port change two days later because it failed in the O.R. I was a mess with a million leads and sticky things,carts, poles, people… in my icu room I was pretty sure I was about to crack. But everyone took wonderful care of me. Got me settled down. I was just trying to understand that my life had just changed in a drastic way. I learned I would never be the same again. My left side brain took a hard hit from that tumor on my right side brain. (You know how it works, one side controls the opposite.) Moving on… I’ve had to not only learn how to tie my shoes, put on my clothes and shower it’s hard to text and sometimes read. I also have a bleed behind both eyes but worse behind my right. Surgery for them may be right around the corner.

Right now I am doing physical therapy and it isn’t fun at all . My left foot is always numb and pretty much can’t feel it.

I have had some of the most paralyzing days of my life, that are very scary with this disease, however I refuse to let it swallow me in. I admit though, it’s hard. Cancer is EVERY where in my family. Right now I’m just living. . Taking day by day and not trying to worry as much. Trying to be happier and not to be Wonderwoman; but to be as brave as I possibly can.

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

Fighting AGAIN!!!!

So I’ve been REALLY busy. Making appointments for not only MRI and C.T scans, but also finding out my tumors had grown at an alarming pace. So with that being said I’ve had neurosurgeon appointments, my radiation oncologists and now being sent to have gamma knife stereotactic surgery done to safely try and remove the three in my peritial area. Or at least shrink them down to a safe size and hopefully stop them from growing. Right now that’s all I got. I’ll shoot a longer one when I know more after my consult (May2nd) and and date for Gamma.

Change~ again.

Wow things can change so fast! I wasn’t supposed to be on or take Opdivo https://www.opdivo.com/ unless things got worse. Well in a month I developed a tumor (a tiny one) and one below grew from 5mm to 9mm. Seriously! Valentines Day was a mess. I think I cried all day. Anyway, we went and had a long discussion with my radiation oncologist, and he suggested taking my steroids up a bit for the swelling on/in the brain, rather than any type of radiation. Here’s why… If you go back into the brain too soon after its already been through radiation it may or may not cause severe brain damage. We don’t want any of that! I am already off balance, have headaches and am dizzy most of the time and that is cause from those stupid things in my head. Also, he would like to see what the Opdivo and dexamethasone (steroid) do for the edema around my brain and recheck in three months to see what’s going on in my brain.

Both Dr. DiMartino and Becky are in agreement that this drug may save my life. I have read and read and read on it. Talked to some people in the chemo room that take it and they don’t really have any complaints. Oh, and I can tell you that two hours of infusion time sounds WAY better than 8!! I put a lot of faith into my doctors. They have got me this far and I owe it all to them. But I have been working hard too, not trying to blame myself so much. For what I can and cannot do. How I get tangled up in sentences… little things to you maybe but huge to me. Cancer really does affect everything you do; from eating to sleeping, being the best parent you can be… a friend. A better patient to her caretaker and sometimes to her family who just want to help. To just having a conversation with someone and remembering it the next day.

So lets do this. Lets make a change. Lets live longer. Lets believe.

Short and sweet Update…

So some things have changed since my last post. I will NOT be starting Opdivo because of the most amazing CT scan ever!!! Everything in my chest is shrinking even more than the last scan!!  Dr. DiMartino says that the Alimta will keep working because it’s already working. So no more carboplatin as to it’s draining my bone marrow and platelets are weak, but I trust her more than anybody in the world. Well, and Becky Cutchin.  I feel good about this report and plan of action. And will have chemo every four weeks as planned. Along with B12 injections and appointments to see where we’re at. 

Most of all I thank God for helping me out along this adventure in my life. Also to my caregivers; and I have so many. Love to you ALL. 

 

I’m Alive

Why have I been such a bitch lately? I’ll tell you why. These steroids are taking over how I breathe, how I think, how I interpret others, how I see things.  AAAAAAHHHHH!!!!!!!!!!! Talk about making someone with head issues worse. I realize why I need them, but seriously… my mood is driving my family crazy. Not to mention chemo brain…

So here we are back to CT today to take pretty pictures of my insides to compare before and after I start my new therapy. 

 I am going onto immunotherapy:  Opdivo   because my bone marrow is just too tired to continue on regular chemotherapy. I have been told it has its side effects but so does soap, and food and trees, cats, dogs, and anything else out there in our lives. I HAVE to try something and my oncologist really thinks this will be good for me while my marrow heals in the  meantime. I am shy about this and excited at the same time.  I can always go back to chemo afterwards. I have spent almost 4 years of my life on chemo, but I believe I’ll be alright.  I also believe you have to have a certain trust with your oncologist and nurses. I absolutely do. 

Sometimes I sit and think about the people who say “I think of you all the time!, or I’ll pray for you”. I wonder if they really do, because in my cancer community I care for and think of  and pray for them as much as I can. We need it. I am so grateful for who I have in my life. I choose who I have in my life in my circle of friends, the ones who pay attention, and ask questions, ask about my kids. You know, the real guys and gals that love us…  And just recently found out a friend of mine from high school was diagnosed with leukemia so we battle on together. Crazy how things happen, you never think its going to be you.  But it very well could be you. Pay attention to your body, it may not be just a cough or tummy ache, you might not be having just headaches, talk to someone. Be proactive. 

And try and remember those who ARE helping you and loving you even when you aren’t loveable- you know, your caregiver {the most}; your friends and family who listen to you babble on when you’re having  a bad day… let them know what they mean to you an how much you love them. Today I am going to focus on the fact that I have done this and I will continue because so far, I’M ALIVE! 

 

UPDATE: I will NOT be on Opdivo due to the amazing report we just got. read next blog. 

 

 

 

And the bottom falls out. (Of my bubble)

Lets add more meds, Potassium, EVEN MORE steroids, to cover brain swelling that my radiation oncologist believes is just radiation swelling forming a spot…. (the size of 5 dimes stacked) -platelets falling, hemoglobin shot feels like a little to one but to one like me feels like the world is crumbling around them. Like you have to live in a bubble. You have to watch your step so you don’t fall, don’t use cutlery or you could bleed out. Staying in a store almost makes you want to be wheeled out on a stretcher because you’ve become so tired you need down time for the next so many days following.  I hate it. I just want my fun fast paced life back. 

Listen, I’m not trying to bitch… It’s just hard. Relying on the ones that I love to help so much with the smallest of things.  Laundry,  dishes,  sweeping, trash, something I love to do in the winter shovel the walk. However; with the steroids WOW those keep me up at night  and I can’t think, sleep, or anything that requires brain “smarticles”. I think I’m Superwoman and can hide that I rearrange my cabinets and dust and wipe the walls and such at night where I won’t get caught.  But it hasn’t happened yet.  Then though, after doing all these things I am in so much physical pain it’s literally ridiculous.  I should be able to do that, right?? WRONG.  

Music has always been my therapy along with driving and driving is gone for the moment as well. I guess writing does something constructive with my time. With each sentence a tear falls. With that being said; as always I’ll grab a tissue and keep that hope and believe that I’m not done yet. Hold on. Always holding on and never letting go of hope. Ever. And this anchor ⚓ will not sink. 

 https://youtu.be/kS5KMsUl1NI

Daily rants from a mad woman…

Things have changed in so many ways. My dad and I are talking again. I had my 38th birthday and my best friend/cousin took me out. It was fun and my body needed it…. lots of laughs!!! So far my tumors haven’t grown and I’m in the process of having another CT scan to see what’s going on in my chest an lower areas. I can’t explain to you or anyone else what it feels like to know you’re going to lose your life, how scary it is. Although I know the people who love me and my caretaker they get it. They really do. They don’t push me. And I don’t know how it feels to them. I’m still breathing. I’m still in chemotherapy (carboplatin & alimta) if that doesn’t work, it will be Opdivo. I will NEVER give up. It just all hits you so hard, ya know?? Days go by I don’t think of my cancer at all. And then I have days where all I want to do is scream, cry, and beat my head into a wall. But I cant. I have two daughters and the love of my life that stick to me like glue. I don’t and am not ready yet. Too much to stick around for. I’m so proud of my kids, love them to infinity; and it makes everything come together in my mind of not giving up. And that I AM WORTH IT, & I have HOPE. Even though my doctor’s haven’t told me that I’m terminal, they have said that there’s no cure. So I still pray for a miracle from God, not just for me but for A CURE, I will stay here and FIGHT!!! Those of you that love me, don’t give up on me on my bad days or as I say just leave me alone… Keep praying. I wanna stay & play!!!

 

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. ⚓