Today I was notified that my blog was chosen as one of Healthline’s Best Metastatic Breast Cancer Blogs of 2017. Thank you to Healthline for recognizing my blog and The Metastatic Breast Cancer Community.
Find other metastatic breast cancer blogs here: http://www.healthline.com/health/breast-cancer/metastatic-breast-cancer-blogs
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!
Just hearing cyberknife and knowing it was for a tumor behind my eye was beyond anything I could imagine. Then I was told it would take 3-4 hours and I would be awake the entire time. This was not an appointment I was looking forward to!
I have to tell you it sounds worse than it is. It actually doesn’t even involve a knife. It’s a robotic radiosurgery system that delivers beams of high dose radiation to tumors with extreme accuracy. No cutting and no pain involved. I was fitted for a mask the week before surgery. For me, this was the only uncomfortable thing about the surgery. The mask is screwed into the table and it’s tight. Here’s a picture of my mask. I see a Halloween costume in T.J.’s future, it’s scary!
They gave me an Ativan before the surgery. I was worried about being awake during this. If they had said we give you ativan before we start I would have had no worries. I remember my mask being attached and getting up. That’s it. I won’t have a new brain MRI until the end of October. I’ll update you when I get results. Waiting is always the hardest. I just try not to think about it and go on with life.
This is a picture of the Cyberknife System. The robotic arm moves to hit targeted areas.
Now for the aftermath. I vomited for 2 weeks and lost 15 lbs. I couldn’t eat. Everything I tried to eat tasted so salty and I would get sick to my stomach instantly. The medical term for this is Dysgeusia. I ate chicken nuggets for two weeks. Now I’m eating fish, rice, cantaloupe, chicken nuggets, cheese on unsalted crackers and cheesecake. My Javiee is still making me juices and I’m keeping them down. I do miss his cooking! Chocolate and red meat are the worst right now. I never thought I’d see the day that I turn down chocolate! I still have days when I’m just completely exhausted. On those days I celebrate going to the grocery store! On the bright side I’m having more good days than bad now! That’s really something to celebrate!
I have to end with a picture of T.J. holding my grandson Jax. I think this is the first time he held him since the day he was born. He was completely uninterested in holding him during the slobber and spit up days. I honestly didn’t think he’d hold him until he was out of diapers. I was so proud of him!
Get out and make some memories!
One day after completing 15 rounds of whole brain radiation I went in for my Oophorectomy. It was an out patient surgery. My surgeon told me the recovery would be easy. I shouldn’t be in pain and I should feel ok the next day. Just take it easy and no heavy lifting.
Here’s what he didn’t tell me. Don’t lay down after surgery.
I went home and went to bed. I woke up the next morning in horrible pain. Not abdominal pain, it was shoulder pain. The gas that had been used to expand my abdomen during surgery had set up in my shoulder. I should have slept sitting up in a recliner and I would have felt fine the day after surgery. I wasn’t told that and I took pain meds and cried with shoulder pain for about five days. It was bad! If this surgery is in your future remember that and you should have a fast recovery. I have four tiny scars from the incisions and they healed within two weeks.
Now for what was hiding in each of my ovaries:
That’s a picture of a tumor that was in my ovary. There was one in each ovary. This is the largest one (2.0 cm). How did a tumor this size not show on my scans? The good news here is that we had it tested and it’s still er/pr+. That gives me hope that the new medication I’m on can work on my bones and lung.
I go in for new scans next month to see if Faslodex and Ibrance are working. I’m a little concerned because my tumor marker keeps getting higher every month. Then in October I will have a new MRI to see what all the brain radiation has accomplished. Until then I’m staying positive and living every good day to the fullest. I’m also sleeping a lot. I don’t know if it’s still exhaustion from radiation or my new treatment plan but there are days when I just don’t want to get out of bed.
I want to send a big thank you to everyone that has messaged, called and came by to share their love. I even received care packages from Australia (I ♥️You Emma!) and from Arizona (I ❤️ You Sally!) You all make my world brighter!
Get out and make some memories! 💕💕
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!
What a week! I’m exhausted, mentally and physically. I had an IV steroid treatment last week to reduce the swelling in my head. I was then put on an oral steroid that I am taking two times a day. I’m not a fan of steroids. I hate not feeling like myself. They make me irritable and nauseous. They make my blood glucose out of control. They have relieved my headache, but I have decided I’d rather deal with a headache. I quit taking the steroids yesterday. Today I slept until 1 p.m. and I’m feeling a little better.
I saw my radiology oncologist, Dr. Smather’s, last week. I really love her! We went over the results of my Brain MRI. She is confident that this is something we caught early and can control. There are tiny spots all over the cerebellum (the back of my brain). It’s almost as if someone has taken a Clorox bottle and sprayed it on my brain from behind. Because these spots are scattered our course of treatment will be WBR (whole brain radiation). I have always known I didn’t want to do WBR. However, this is the plan. This is what I will do. My youngest son is 13. I cannot discount any treatment. I will do whatever I have to for the chance to see him graduate high school. So, here’s the plan…
15 days of WBR starting this Thursday. The following Friday I will leave radiation and then go over to the hospital to have my ovaries removed. While all this is happening I will also be adjusting to the new chemo I will be starting this week. When WBR is completed we will do a new MRI and decide if we can do targeted radiation to the tumor behind my eye or if we will gamma knife it. Geez! I believe this is going to be a hard month!! (understatement of the year!)
My doctors are confident, as am I. I have so much left to do and so many more memories to make! I am hopeful that this is just a temporary setback.
Thank you all for your love and support. I will do my best to keep you updated.💕💕
Here’s a picture of my Javiee and I on our latest road trip. I’m focusing on a family cruise when this mess is over! Take time to make memories!💕
The past two years have been fantastic. Zoladex and Femara have served me well, until now. I ended up in the emergency room on our beach trip with a massive headache. I was treated for a migraine. My headache never went away. I had blood work done at the cancer center when we returned home. My tumor marker was on the rise. Scans showed a tumor in my ovary, two on my hip, on my ribs and on my spine. A brain MRI showed it had also metastasized to my brain.
There are no words that can begin to express how devasting this news is to us! What a change in only three months! We have cried, screamed and cried some more. There is nothing left to do but fight this. My big girl panties are back on. (Thanks to words of wisdom from a dear friend, Anya)
So, what’s next? Tomorrow I will see a radiation oncologist. I will find out exactly what the brain scans show and get ready for radiation. I will be starting a new chemo (Ibrance and Faslodex) next week. Three weeks on and one week off. I will be getting xgeva monthly for my bones. I will also be having surgery to remove my ovaries. Wow! This is not what I had planned for this summer! I will keep you updated. I’m grateful to have all your support! You all make my life brighter!💕💕💕
I have so much to share about our Little Pink Houses Of Hope trip. Life has been crazy! I will share pictures from our trip soon!
I’m sharing exciting news today! I was chosen to participate in The Little Pink House of Hope! Our toes will be in the sand on Carolina Beach this time next week! I screamed like a ten year old when I got the email saying I was chosen! The Little Pink Houses Of Hope give people with breast cancer a break from life and a chance to reconnect. We will be staying in our own private beach house for a week. Food and activities are included. Those of you that read my blog will remember we had a beach trip planned last summer. Instead of the beach I ended up in the hospital. I was devastated! This trip is such a blessing to us! We’ve been through so much over the past three years! I’m really looking forward to some down time with my sweet Javiee and T.J. I am full of gratitude!
Here is the mission statement for The Little Pink Houses of Hope:
To promote breast cancer recovery by offering opportunities for survivors to reconnect and celebrate life.
I celebrate life daily, but what better place to do it than the beach!?!
If you want to help people living with breast cancer please support The Little Pink Houses of Hope. They are helping breast cancer patients get a new lease on life. Treatment can be so harsh and cancer takes so much away from you. Sometimes a break from reality can be the best medicine! Click the link below to help!
Click here to support Little Pink Houses of Hope
If all of my followers will take a moment and read and sign this petition we will have enough signatures! Please take a moment of your time and sign! Races won’t save our lives but research will! Click the link below to show your support! Thank you in advance! You all make my heart smile! All my love…
Please read and sign! (this is the link)
WE PETITION THE OBAMA ADMINISTRATION TO:
Add metastasis research as a specific goal of the Cancer Moonshot
90% of all cancer deaths in the United States are caused by metastasis–the spread of cancer through the body. But the current Cancer Moonshot goals don’t include research into the causes of and treatment of metastasis. Metastatic research has been chronically underfunded, resulting in a continuing lack of understanding of metastasis and how to stop it. Although many of the moonshot goals may help metastatic patients, understanding the metastatic process is vital to saving lives and turning terminal cancers into chronic diseases. Making metastasis research a specific goal of the Moonshot will bring important attention and resources to bear on solving the mysteries of metastasis and providing better treatments for metastatic patients.