I have been home a few days now. I’ve spent the last 10 days or so in the hospital. Unknowingly, In the hospital. I honestly thought I had been kidnapped. I know it sounds crazy but it’s not. My Mom and my husband were trying to get me up from my bed at my house. I would vomit every time they tried. I couldn’t speak to them. I couldn’t walk. I was completely unaware. They called an ambulance, if they hadn’t, I wouldn’t be here today. It seems to be the chemo therapy I was on caused Cancer-Related-Hypercalcemia. My calcium levels were so high, I was literally out of my mind. I’ll follow up on this later. Right now I’m just trying to give you an idea of what’s going on.
Though my brain looks better, I’m actually doing worse than I’ve ever been. I now have leptomeningeal metastases which have spread to my meninges and spinal fluid. It can’t get much worse for me. I have two more days of radiation. I don’t know what’s after that. So far I’ve heard there is nothing else to do.
Right now my plan is to rest and get through my last two radiation appointment’s. My doctor has said I can have no visitors until she sees me next week. The least little germ could kill me right now.
I’d love to see you guys, I just can’t. I saw my kiddos the other day, so I have a few pictures. For now that’s really all I know. I have to give this to God right now. I’m serious when I say I can’t even walk alone. My mama and my Javiee have been doing everything for me. Stop and think about that. It’s so hard, but I’m so blessed to have them here right now. I will update you all as soon as I know more. I love you all! Thank you for the love and prayers. Get out and make some memories!💕💕
My latest scans showed progression to my ribs, spine and pelvis while I was on Ibrance. I have multiple new pelvic and femoral lesions. My spine has many new lesions (T5, T7, T8 and T12). The good news is there was no new growth in my organs and the tumor in my lung is 2 cm smaller. My tumor markers are also still dropping. I’m at 132 now!😀
I have a lot of pain in my hip. My oncologist was concerned and thought I may need a pin in my hip. He referred me to an orthopaedic oncologist, Dr.Gajewski, I loved him! He’s a great addition to my team. After x-rays and an exam he said no pin! The pain is muscle and nerve pain from my spine. I aggravate it by driving a five speed. I guess it’s time to get another car. He also said yoga will help. Time to start a yoga class!
As of February 8th I have lived with metastatic breast cancer for 4 years. Though I’m sure I had it years before I was diagnosed. I find it sad that I was told I didn’t need a mammogram until I was 40. I can’t help thinking at 35 I would have caught it before it spread. It is what it is. I’m thankful for the past four years. Even during treatment, my days have been filled with memories. I’ve had more time with my family. I’ve watched T.J. grow into a young man. So many special people have come into my life the past four years. I am so grateful. Let’s not forget….I became a glamma! I’m so in love with little Jaxon. He is perfect. In May I will be a glamma again! To a precious little girl. I hope she looks just like me!!😂
Living with metastatic breast cancer isn’t easy, but I’m living! That’s all that really matters. Get out and make some memories! I love you all!💕💕
Look at my new wig my sweet Javiee bought me. I love it! My hair is beginning to come back on the sides. The top is still bald. I call it a nohawk.
There are a lot of different opinions when it comes to tumor markers. My first oncologist tracked my markers and believed that they gave her an idea of how my treatments were working. My new oncologist doesn’t worry about them as much. I feel like I’m one of the lucky ones that can follow tumor markers. When taxol failed my tumor makers rose. We changed treatment and they dropped. The same goes with Femara. I went to Ibrance and my tumor markers climbed to 694 (CA 15-3) and 410 (CA 27-29). My markers have never been so high! We changed my treatment to Afinitor and they dropped. I’m at 189 now. That’s still not a good number. I want to see it under 30 again. For now I’m grateful to see such a big drop!
I’m scheduled for a new bone and pet scan the first week in February. I have a lot of pain in my lower spine and my neck. I know there was progression when I was on Ibrance. The question is how much. Back to waiting!
Until then I’ll keep taking my pain meds and enjoy some time with my Javiee (he’s off for a few weeks!). T.J. is keeping me busy with wrestling matches. I walk into a match with no energy and leave as the cheering mom. He’s doing really well. I won’t miss a match even if I have to drive an hour to get there. I’m just so thankful to be here to see him participate. There’s no way I would miss one!
Ok, one more story to share! My favorite Christmas song is The Christmas Shoes. I play it every Christmas. This year for Christmas Kori gave me Christmas shoes and had the song playing when I opened them. I cried and cried. It was a special Christmas full of special gifts but this one made my heart smile. I know this song will always make Kori think of me. Memories, the only thing that will outlive us! Get out and make some! I love you guys!!💕💕
I have to include a picture from Christmas!
I have survived 15 rounds of whole brain radiation. Initially the hardest part was driving to Asheville and back everyday for a treatment that lasts less than 10 minutes. I videoed a session for those of you that may one day have to go through this.
Whole Brain Radiation Here’s the link
It was a painless procedure. My mask was latched to the table, everyone left the room and the radiation took a few minutes. There was a smell that came with the radiation. It reminded me of Clorox. The first 13 rounds were fairly easy on me. I was dizzy afterwards and needed a nap. I was surprised because I was expecting worse. It hit me at round 14. My forehead and my ears burnt so bad. After round 15 I couldn’t hear and my ears smelt horrible. I was told to take Mussinex to relieve pressure behind my ears. I did that for a few days and didn’t notice a difference. I ended up putting peroxide in my ears for a few days and my hearing is back! I must tell you my oncologist advised against using peroxide. It worked for me. My eyesight also got bad with the last rounds of radiation. I couldn’t read anything! I’m using readers now and I feel them getting stronger everyday. It’s been two weeks since my last round of radiation and the fatigue is extreme. I’m so tired. I just keep reminding myself that it’s over! I have had a hard month!! The day after my last radiation appointment I had my ovaries removed. I’ll do a post on that soon. I’m scheduled for the gamma knife and a new MRI in August. Until then I’m going to get out and spend some time with my guys. I’ll end with some pictures.
This is my radiation mask.
This is one of the Mets to my scalp. Radiation healed all of them. Let’s hope it’s working as well on the inside!
This is a harsh one, but I share my truth with you guys. My forehead after 15 rounds of WBR.
Now for one that shows me on the mend! It’s a wig!
I’ve been a real slacker lately when it comes to my blog. My apologies to all of you that follow it. Until recently my life has been pretty mellow. I’ve been struggling with bone pain from the cold and Femara. My daily number of pain pills went from 3 to 6 or 7 a day depending on the weather. That little pill does a number on my joints! Being in constant pain is mentally draining. There are days when I have to stop and remind myself to just be happy that I’m alive and here with my family. That’s all that really matters! I’ve noticed as the weather gets warmer my bone pain gets better. Maybe I should move to the beach!
I had a PET Scan a few months ago. It came back good. Recently I’ve started having pain in my hip and under my left rib. The rib pain is my biggest concern. It’s progressively getting worse. My pain meds only dull the pain, it’s constant. I had a bone scan that showed mets in those areas. My oncologist referred me to a radiologist. He said I was looking at radiation 5 days a week for a couple of weeks. I had an appointment with the radiologist. She looked at my scans and decided to send me for a CT this Wednesday. She said the bone mets are pretty un impressive and that she needs to know what we’re really looking at before she treats me. Scary! I told my Javiee before the bone scan I really can’t tell if the pain is my rib or under my rib. So that’s where I’m at right now. More scans Wednesday and results Friday. I’ve said it before, waiting is the hardest part!
On the bright side..
T.J. has adjusted to life in North Carolina so well! I know I told y’all he was student of the month his first month at his new school. Well he was also chosen to be in the gifted program and he participated in the Science Olympiad this past month. I’m so proud of him!
My oldest Kori and his other half Emily are making me a grandma next month! I’m so excited to meet this grandson of mine! A few years ago I didn’t think I’d live to see a grand baby! I am blessed!
Kristen is turning 21 next month! I’m so thankful to be here for that!
My Javiee is still the most precious man in the world. He’s still making me juices and keeping my diet interesting. Quinoa meatballs were his latest creation and they were yummy! I’m so lucky to have him by my side. I can’t imagine dealing with all of this without him. He’s my rock. He keeps a smile on my face even on the worst days!
I hope you all are good! I love you all! Now I’ll end with some pics!
That’s T.J. He’s not so little anymore!
Thats my snow letter from my Javiee. Yes, he calls me punk! 🙂 It’s a term of endearment!
That’s my Javiee and I on a weekend getaway to Gatlinburg, TN.
I couldn’t leave out the quinoa meatballs! 🙂
The results from my CT and Bone Scan Came back clean! They show nothing! I can’t even begin to tell you how relieved I am! I was sick with worry. I don’t think there will ever be a time that having new scans done doesn’t stress me. The results are like a verdict to me. Am I gonna live or die this year? It’s horrible! People tell me to relax. We could all be hit by a car tomorrow. It’s true, we could. The difference for me is that I’m not standing on the side of the road. I’m standing right in the middle waiting for that car to hit me. It’s not an easy way to live! For now I am so thankful to have clean scans! This has been the hardest year of my life and it ends on Feb the 6th. I’m ready for my new year!
I’m almost two weeks post op from my final reconstruction surgery. I’m feeling good and so happy that I did it! I will do a blog post with pictures soon. I’ve been so stressed with tumor markers, scans and recovery that I just haven’t felt like doing it!
Here’s another reason for a happy dance! My little one was inducted to the National Honor Society this week. He did such a good job giving his speech! I’m so proud of him!
Monday I go in for my final reconstruction surgery! Any surgery makes me a little nervous, but I’m ready to get it over with. I’ll post some pictures of the expansion process this weekend. The difference with just the expanders is amazing!
My tumor marker is at 108. That’s not good, but I’m not overly concerned about it right now. Last week I went down with the flu. That was three days after my blood work. I’m hoping that could have made my number higher. Either way, I’m not going to waste my time worrying about it. I go in for a bone scan and a CT scan on the 30th. That’s going to be a long day! I start at 9 am with an injection for the bone scan. At 9:20 I get my yummy drink for the CT scan. My CT scan is scheduled for 10:20 and the bone scan is scheduled for 1:00. Now that’s a day to look forward to! I have an appointment with my oncologist on the 31st at 3:45. That’s when I’ll get the results. Fingers crossed!
As much as I hated the hot flashes and weight gain that Tamoxifen caused (yes, I’m going to blame the weight gain on tamoxifen..lol!) They were things I could deal with to keep my cancer at bay. I was being positive and hoping I would be lucky and have a five year relationship with that pill! No luck there! My tumor marker has risen to 108. Not good! That means Tamoxifen is no longer working for me. I had a PET scan a few weeks ago and it looked good. Now I’m scheduled for a bone scan and a CAT scan. The results will tell us what’s next.
I have to say I’m devastated! This is not the way I wanted to start a new year! You know when your about to have a baby and you go through this “nesting phase”? That’s the only way I know how to describe what I’m feeling. We had been planning on moving closer to home (Georgia is where we’re from, Colorado is home right now). Now I feel a certain urgency to move and get settled in closer to home. Financially, this past year has drained us. We can’t just up and move tomorrow. I have one more surgery this month. Once I recover it’s back to work I go whether I feel like it or not. I think moving and getting everyone adjusted will give me peace in my heart.
Now, don’t take what I just said the wrong way! I feel really good. I have no pain and I’m full of energy. I’m praying for good test results and I still have my positive attitude. I just think getting my family closer to home and settled in will let me relax and fight this without worrying if they will be ok if something goes wrong. Cancer is a b***h! What more can I say?!
On the bright side, my oldest, Kori, got engaged this week! I’m so happy for him! The joys of being a mother!