Whole Brain Radiation

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.

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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!

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This is a harsh one, but I share my truth with you guys.  My forehead after 15 rounds of WBR.

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Now for one that shows me on the mend!  It’s a wig!

 

 

 

 

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!💕

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!

Happy New Year To Me!

A year ago today my Javiee and I were standing in a parking lot hugging and crying. We had just been told I had breast cancer. This has been the hardest year of our lives! I’m so grateful to have made it through this year! Happy New Year to me! May I have many more!

One more round of Taxol to go!

It’s Monday and I’m feeling good!  I did round 11 of Taxol Friday.  I go in this Friday for round 12, the last one!   I remember the day my oncologist told me I was going to do 12 rounds of Taxol.  I was devastated!  Twelve more weeks of chemo!  How was I going to make it through that!?  Well, I did it!  One more round to go!  The inner strength you find when dealing with something like cancer is amazing!  The strength and love that the people in your life give you is also amazing.  I couldn’t have made it through this part of my journey without all the support I’ve had.  I have to say thank you to my sweet Javiee for taking such good care of me.  For working all day and coming home to make me yummy dinners and yucky juices!  For telling me I’m beautiful when I just don’t feel beautiful!  He is always there for me, he’s my rock and I couldn’t do this without him!  My kiddos have also been so strong.  How unfair is it that they have to deal with this!!  They also give me strength.  I fight for them!  To all my family that came a thousand miles to visit me ( Daddy, Joyce, Laura, Betty, Diane, Danny & Patsy) Thank you!  It was so good to have company, even when I was feeling my worst!  To all my family at Denny’s,  Arvin’s and Noah’s Ark, you guys have made this horrible time so much easier for us!  For that my family thanks you!  We love you all!  Then there’s my mama who has been with me every step of the way.  She took so much time off work to be at my many appointments.  I couldn’t imagine having done this without her!  I am thankful to have such a great support system!  I am a long  way from home, so I know a lot of you can’t visit and you follow me on my blog or my facebook.  Thank you guys for all your support!  It means so much!  You encourage me daily!

As far as my treatment goes, I will do my last round of Taxol this Friday.  The following week I will have another PET scan.  That will show us if the past five months of chemo has gotten this cancer under control.  The results of the PET scan will decide my future treatment plan.  For now, I’m just praying for good scans!

On a happy note, my son, Kori, turned 21 this week!  21!  He’s making me old!  Happy Birthday Kori!  I love you with all my heart!

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That’s my oldest, Kori.  Happy Birthday Kori!  I love you!!!

 

TGIF??? No…For me it’s more like Taxol…Round 8!

Friday again, chemo day.  TGIF doesn’t pertain to me anymore!  It’s more like TGIM!  By Monday I’m usually over the bone pain and leg cramps that seem to get worse with each round of Taxol.  No, Friday is not what it used to be!

On the bright side I can say after this round I have 4 more to go!  Does that mean after 4 more rounds I am done with chemo?  Your guess is as good as mine.  This cancer inside of me seems to be the deciding factor.  For now my tumor markers are down and that gives me hope  that my Fridays in the chemo chair will soon come to an end.

I had a lady come up to me this week at Natural Grocers.  I wonder how she knew I had cancer, could it have been my bald head or my lack of boobs??  She told me to stay strong.  She battled cancer two years ago and there would come a day when I would wake up and not think of cancer.  I thanked her for her kind words.  After all, she was only trying to be an inspiration to me.  Little did she know,  I’m stage 4 and not a day will go by when the thought of cancer is not lingering in the air.  I had an emotional breakdown once we made it to the car. How nice would it be to actually entertain the thought of not having to think of cancer!?   Unfortunately, that is not a luxury you have when your stage 4.

On a happy note…I had pizza this week!   My Javiee is the best!  You all know my diet is very strict!  Javiee found the perfect pizza recipe.  Of course he didn’t use white flour, it had 2 grams of sugar in it!  He used wheat flour and made his sauce from scratch.  It was yummy!!  I am a lucky woman to have such a great man to help me through this!  I am blessed!

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Here’s a picture of my pizza!

Chemo begins again…

I enjoyed my two week break from chemo!  It was nice to feel like my old self for a little while!  Javiee and I went with T.J. on his class field trip to Ouray.  Good times, oh how I treasure them!!  I was a little nervous about going to the hot springs.  It was my first time out in a swim suit with no boobs and no hair!  A friend of mine, Trish, told me to just own it. What good advice!  (Thanks Trish!). Own it.  That’s all I can do.  Cancer has taken enough of me.  I can’t let it keep me from doing things with my little one because I’m worried about what other people will think!  How liberating!  I think it’s the first time I put on a swim suit without worrying about that little pooch in my tummy!  Why do we care about those things anyway??  It’s the moments and the memories that matter.  Cancer has a way of opening your eyes to everything.  If there’s one thing you can take from what I’m going through, take that.  Enjoy every moment and make memories with your family that will outlast you!

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That’s me and T.J. at the mine in Ouray.

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That’s me with my Javiee. I’m still so swollen from chemo, but he loves this picture.

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Ouray, Colorado

On another note, I started chemo again Friday.  I had my first of 12 rounds of Taxol.  I will be doing Taxol every Friday throughout the summer.  I looked at the calendar yesterday.  I will finish chemo one week before T.J. goes back to school.  I hope the side effects are minimal so I can enjoy the summer with him!  The first round went really good!  I was really dizzy after it.  I came home and slept the rest of the day.  I woke up Saturday feeling good and I still feel good today! I’ve heard Taxol is a lot easier to deal with than the AC was.  So far that seems to be the case!  Praying all 12 rounds are like this!

The results are in…

I went in for my PET scan yesterday.  It shows no new growth and improvement!  Yay!  That was what I needed to hear!  The past 3 months have been so hard on me!  It’s good to know that all I’ve been through has helped.  Talk about life changing!  That’s what cancer is!  

I was hoping for a break from chemo.  How nice would it be to feel normal this summer!  No chemo brain, no nausea, no extreme fatigue, no bald head, could I be so lucky?? No..my new treatment plan is in full force.  12 rounds of chemo, one every Friday for 12 weeks!  On the bright side it’s not AC, it will be Taxol this time.  I hear the side effects are a lot easier to handle than the side effects of AC.  Praying this is true!  Seeing the improvements on my PET scan helps to motivate me for the next 12 treatments.  I can do this!  As far as feeling normal goes, I guess its just time to find my ” new normal”!  

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That’s my T.J. out by the river.  It was so good to have a little break from chemo!  So good to be outside!

Bloodwork for Chemo round 3…April 11, 2013

That's me with my Javiee.  I miss that hair!

I went to have my bloodwork checked today to see if round 3 of chemo is a go. My white count was perfect and I will have chemo tomorrow. My doctor says she needs to put all her patients on my Javiee’s juices because I’m the only one of her patients that doesn’t have a problem with constipation..lol. I told her it was the beets! My man is the sweetest and his top priority is taking care of me. Everyday he puts a fresh beet in the juicer for me. When I get that down he does carrots. The beets taste like dirt to me, but I down it because he says it’s good for me. The carrot juice is actually yummy. I am a lucky woman to have a man who loves me the way my Javiee does. He gives me hope. He gives me strength. He is my treasure.