New Scan Results

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.

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My CyberKnife Experience

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!

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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.

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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!

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Get out and make some memories!

 

 

 

What you should know before an Oophorectomy

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:

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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!  💕💕

 

MRI Results and A New Treatment Plan

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.💕💕

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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!💕

Back to Cancerland

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!

 

Happy Birthday Jaxon!

The joys of being a glamma!  My grandson Jaxon turned one this month!  I felt so blessed to be there when he was born.  I cried like a baby the first time I held him.  I can’t even begin to tell you how happy I was to be at his first birthday party!  He is such a happy baby and he has the sweetest soul.  He is the greatest gift and I am so blessed to be his glamma!  Thank you to my son, Kori, and to Emily for making me a glamma.  It is a title I treasure!💕

You know pictures have to follow!

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That’s my oldest son, Kori, Emily and Jaxon.

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This is Jaxon with his cake face.

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Jaxon and his Glamma (me)!

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That’s T.J. my youngest son.

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Grandpa Javiee with Jaxon.

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This is my precious Jaxon! Could he be anymore beautiful!?!

 

 

 

 

 

In Memory of Another Stage 4 Sister

Sara el Hassani is now dancing free of pain. She lived with metastatic breast cancer for over six years. Through it all she never stopped dancing.  She was such an inspiration to me.  She will be missed.

 

You can find Sara’s blog here:

https://saraelhassani.wordpress.com

It Is What It Is!

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We had this sign made for our house recently.  It is what it is.  This seems to be our family motto.  We don’t look at it in a negative way.  To us it means exactly what it says….it is what it is!  I live with stage 4 metastatic breast cancer and all the side effects from treatment.   Now, I also live with treatment induced diabetes.  The key word here is live.  As long as I’m living, there is nothing I can’t handle.  There is nothing that will break me or take away my smile.  I go with the flow and keep on keeping on.  Because it is what it is, there’s no changing the hand I’ve been dealt.

I’ve spent the last few weeks finding my new normal.  I’m feeling good again!  My diabetes is now under control.  I’m taking Levemir, a long acting insulin, every morning.  I’m also taking 8 units of Humalog for every 10 carbs I eat during the day.  My diet is still very strict.  The only day I really use the Humalog is on Sunday, my cheat day.  I really use it on Sunday!  There’s no denying how much I love my cheat day!

T.J will turn 13 the first week in October!  I am absolutely extatic!  I don’t take these milestones for granted!  Speaking of T.J., I have to tell you all that he went to Camp Kesem this summer.  It was such a great experience for him.  Camp Kesem is a summer camp for children that have a parent with cancer.  It’s funded by donations and no child has to pay to go.  It’s a week long camp.  It was so good for T.J. to spend time and bond with children that have to deal with some of the same things he does.  He will go back for a reunion in November and return to camp next summer.  If you need a tax write off or just want to help a child dealing with a parents cancer, donate to Camp Kesem North Carolina.  They are doing wonderful things for children!  Of course I have to show pictures!

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That’s my mom and I the day we picked T.J. up from camp.  The next one is T.J.  He’s bigger than me now!

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I can’t end without including my sweet Javiee.  I can do anything with this man by my side.  He is my rock!

I love you guys!

Treatment Induced Diabetes-The price I pay for my dances with Ned.

Treatment Induced Diabetes-The price I pay for my dances with Ned.

Now you all know my scans were good! Something to celebrate! I love road trips, so time to hit the beach!

We were packed and ready to go.  Usually I would be so happy and excited to leave for a road trip.  I was excited but I felt so bad!  I was thirsty, so thirsty!  I drank gallons of water that day and I felt so irritable.  Even after napping half the day I was so tired.  You know me, nothing is going to get in the way of family time!  So off we went.  We stopped for water 10 minutes down the road.  I gulped it down and was still so thirsty.  T.J. has type 1 diabetes and always has his supplies with him.  He insisted that I let him check my blood glucose.  I did and it was so high it wouldn’t register on his meter.  He then insisted we find a hospital.  He said I don’t care about the beach, I care about you.  So we stopped at the next emergency room.  My blood glucose was 627.  They gave me insulin, fluids and put me on Metformin.  Then they sent me on my merry way saying enjoy the beach and follow up with your doctor when you get back.  We drove two more hours and I realized I was feeling bad again.  We turned around and ended up at our local emergency room. They admitted me and started insulin, fluids and other tests.  After two nights there I got the diagnosis, Treatment Induced Diabetes.  My pancreas was no longer working and I was lucky to have not ended up in a coma.  I was in a state of keto acidosis.

I was seriously confused.  My diet is so good. No sugar and everything that is supposed to be good for me. This isn’t about my diet.  This was caused by the steroids I was given during chemo.  I couldn’t believe the doctor told me the truth.  These are the things they don’t want to talk about.  I was given a long list of side effects and treatment induced diabetes was not one of them.  Still, if I were told about it I would have made the same treatment decisions. I mean what other choice did I have?

I’m home now on insulin.  My blood glucose is still all over the place.  I will see a specialist soon and get it under control.  I still feel really weak and sick to my stomach.  This should pass when we get my insulin amounts perfected.  I’m so frustrated that we didn’t make it to the beach, but I’m grateful to be able to plan another trip later.  I’m also so blessed to have my little T.J. as my at home doctor. 😀 I can’t begin to tell you how special he is!

Here are the biggest side effects of treatment induced diabetes (a.k.a steriod diabetes):

Dry mouth
Blurred vision
Increased thirst
Increased need to urinate
Tiredness and lethargy

I had all of these.  The blurred vision was the last symptom I had.  The increased thirst was the first symptom I had. I was thirsty for a week before the other symptoms started.  If your feeling this way, don’t ignore it.

This is what the pamphlet my doctor gave me says:

Steroid Diabetes
Steroid diabetes is listed here as a different type although it is sometimes classed with type 1 and at other times with type 2.

The confusion arises because it is not an autoimmune disease and yet it can sometimes have total beta cell failure.

It comes about from the taking of steroids over a long period of time. Not the steroids used by weight lifters but those often medically prescribed, the corticosteroids or glucocorticoids, such as hydrocortisone, prednisone or dexamethasone.

They are used to suppress inflammation in diseases such as arthritis, cancer, to treat asthma, immune system diseases like Lupus or pemphigus (a rare autoimmune blistering diseases of the skin) down to skin problems like eczema and poison ivy and neurological diseases such as multiple sclerosis.

Another area where steroid induced diabetes is commonly seen is in patients who have had kidney transplants. The amount of steroids necessary to suppress the immune system and lessen the chance of organ rejection can lead to diabetes.

How does the taking of steroids cause diabetes?
Corticosteroids counteract the effect of insulin, which makes your pancreas work harder pumping out more insulin to keep your blood sugar normal. Normal pancreases do this quite happily but if you pancreas works a bit ‘on the edge’ so to speak, it cannot cope with this demand for extra insulin and your blood sugars go up. In other words your pancreas is okay normally but cannot handle the stress of the steroids.

Not all people treated with steroids will get steroid – induced diabetes.

I had 8 months of chemo.  That’s a lot of steroids.  He said it had slowly shut down my pancreas. My A1C was 10.6. (5.6 is what it should be) that means this had been going on for a while.  I was diagnosed at a critical stage.  I guess the lesson here is to listen to your body.  I thought I was good because my scans were good.  That was not the case!

So what now? Rest!! I’m exhausted! My muscles are still so sore from dehydration.  That should go away soon.  Then it’s learning a new normal. I should be good at that by now!  Then, road trip!! T.J. goes to camp Monday.  So I’m finding a nice hotel room near camp and we are hanging out by the pool Sunday!  You know it’s the memories that will outlive us!  As bad as this is, it could always be worse!  I’m thankful to be here and I will be back to myself soon!

I love you all! Thanks for always being there for me!! You all make my world brighter!

I have to end with pictures!

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That’s Dr. T.J.  He gave me his jacket because I was freezing. Check out those chemo curls!

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Family selfie while waiting in the ER. These two kept that smile on my face! ❤️

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Another hospital gown, I should start a collection!