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!💕💕
Xeloda has not been good to me. My tumor markers are higher than they have ever been. They are sitting at 1613.9. It’s usually accurate with what’s going on in my body. 70 percent of my bones have been invaded by cancer. We still are not sure if it’s new cancer in my brain or brain necrosis. I will have new scans in another month to reevaluate exactly what it is. If it’s necrosis then we don’t want to go cutting on my brain. Wait and see. For now I’m taking Paclitaxel. I’m doing it once every three weeks. It can also be given once a week for every three weeks to lessen the side effects. My oncologist thinks once every three weeks is a better punch. That’s what I’m doing. It’s day two and I’m exhausted. I feel so weak. It’s actually hard to get out of bed right now. I’m just dealing with it and resting. It will be worth the down time if it works. Some pictures from my first day back in the chemo chair. I’ll go in one day soon for a port. My arm can’t handle this kind of treatment. I did it, but my arm was on fire afterward.
We used my arm beacause I don’t have a port. Port surgery is next.
It was an hour and a half treatment. I slept.
My, Javiee, my rock, hanging out with me in the chemo room.
I love you Guys! 💕 Plan something fun for the weekend! Make some memories and send me a picture! 💕💕 I’ll do a friends adventure post. We may have cancer, but we’re still loving life!
Copy of RADRPT 07-13-2018-RADRPT 07-13-2018-1
There are two scans there, just click the links.
New scans and another wait and see. Friday there will be a meeting on my body scans. Do we add to Xeloda or make a total change? That is the question. Tomorrow I will see my radiology oncologist and will either start or make a plan to start radiation on my right arm/shoulder. I have been in so much pain the past few days. Even my pain meds don’t help. I got a stronger pain medication today. I don’t like it, it makes me nauseous, but it takes the pain away. That’s where I’m at until tomorrow. I’ll let you all know when I have a definite plan.
Sending love to you all! Get out and make some memories!💕
There are a few impressive words on my scans this month. My favorite is STABLE! It says I have widespread bony metastases that show NO PROGRESSION since 02/06/17. I’ll take it!
So where are my mets?
In my T3, T5, T6, T7, T11 and T12 vertebra. There are multiple mets in my lumbar spine. L3 is the worst and it hasn’t grown in the past three months. There are multiple mets in my sacrum, iliac, pubic rami and my right femur.
Are they painful?
Yes. Some more than others. There is one on my spine that causes shooting pain if I move a particular way. It’s close to a nerve. I take hydrocodone and get on with life.
I also had brain mets and I have a brain MRI scheduled the first of June. My last brain scan was clear. I’m praying for the same result!
Remember the tumor in my lung? Well, there is stable scarring in the left upper lobe. No evidence of lung metastasis! Wow!
The pea sized knot in my neck seems to be my immune systems way of dealing with allergies. Good News! Gotta love it!
It’s always good to hear stable and nothing new! What’s a girl to do? I’m off to Mexico soon with my Javiee. He’s working two jobs to pay for our trip (imagine not seeing your family for 11 years!). Our tickets have been purchased and we’re going no matter what my brain MRI shows. Time to make some memories!! I love you guys!💕💕💕
I’ve lived with metastatic breast cancer for over four years now. My CA-15-3 has always indicated when something was awry. It was 22.8 in December 2015. In June of 2016 it jumped to 169.8. For this reason we started checking my tumor markers monthly. I’ll share from that point on below:
July 2016 267.6 This is when we found brain mets.
August 2016 565.0
October 2016 694.0
November 2016 691.5
January 2017 167.0 This was after WBR/Cyber Knife.
February 2017 132.2
March 2017 159.2
April 2017 172.2
May 2017 183.0
We weren’t concerned with the first rise. It can happen for many reasons. After two more months of higher numbers we decided it’s time to do scans. I had a chest and abdomen CT Wednesday (results next week). I also have a brain MRI scheduled for the first week in June. It’s another wait and see! I have to tell you I Feel Good!! I go on that. It may sound strange but I don’t even worry about results anymore. I just get on with life until result day arrives. Life has been good to me lately! Wait until I share what I was blessed with this week (for those that don’t follow me on social media)!!!!!!! That will be my next post. Until then I’m sending you all love!!!!💕💕
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’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! 🙂
My Scans came black clean! I’m still dancing with NED! I can’t even begin to tell you how blessed I feel today! I was seriously worried! I am every time I have scans. Zoladex and Femara seem to be working for me. My tumor markers are down to 20. Now I’m going to forget about all this cancer business and enjoy the holidays with my family. They seem so much more precious these days. I know life is busy, but stop and take time to enjoy it. Memories last forever.
That’s a picture of my tree! Tis the season at my house. Happy Holidays! I love you all!
I know it’s been a month! Pinktober has passed! A fellow blogger was doing a special awareness piece for October and I thought I would join in. All you needed to do was video yourself reading a piece she had written. I started reading it and hit the 2-5 yr statistic for stage IV women. Then I realized I will hit my two year mark soon. I couldn’t finish the video. That realization hit me hard. I never think of myself as a statistic. I never really even think of myself as living with stage IV breast cancer. I try not to think about it. I take my pain meds and enjoy life. The last Friday of every month I have a visit with my oncologist. That’s when I visit Cancerland. After each appointment I treat myself to a new restaurant and forget it until the next month. This past month I feel like I’ve lived in Cancerland! That 2-5 yr statistic has been lingering in my head. I’ve been in a funk! I have new pain in my rib and of course I can’t help but wonder if it’s back. I’m scheduled for new scans on the 17th. Having that to think about doesn’t help! I’ve put off getting my tattoo until after scans. I don’t want anything to interfere with those results! I need some good news to ease my thoughts! Until then, it’s Javiee to the rescue! We have decided to spend our weekend decorating for Christmas! I know it’s early! We did this last year because I was suffering from scanxiety and it helped so much! Here’s to getting out of that October funk!
Aside from crazy thoughts of my impending death, life is good in North Carolina! The leaves have changed to red, yellow and orange. It’s beautiful here! We explore a new place every Sunday (family day!). Here’s a picture from last Sunday.
I love you guys and I hope your all doing well! I’m going to catch up with your blogs this weekend.