Tuesday, September 12, 2017

Radiation isn't Rad, but that's what some call it.

After a week and a half long fight with Blue Shield of California, my insurance, I have finally been approved for IMRT radiation. I will have 33 sessions and started tonight, which was a rush by me as I had to start my chemo the night before. So last night I slapped on my anti nausea patch and gave myself 2 hours before taking my chemo, not the usual 24 hours. So yes, I spent the night next to the toilet. However, in the long run I think it'll be worth it as I'll finish a day early. And I'm all about the finish line. Especially because my wonderful hubby booked a Disney cruise for my post radiation treatment celebration and as something to give the kids to look forward to. We're still hoping to make it with the whole insurance denying my radiation fiasco.

So here's my first day. I had a mask made 3 weeks ago in preparation for this and several scans done to show the doctors how to line up the radiation with my head and mask.
Once we (Sean went with me for my first radiation treatment) arrived, I noticed how big the door is. Huge and heavy, which tells me how bad this is for someone without cancer.
 It's a huge machine and here's a photo of it.

 I climbed on and they had my mask ready to go, so I had to pull my hair to the side just as I had when they made my mask.

And then I was snapped in, they literally snap my mask to the table and the mask is tight, leaving me no room to move my face or open my eyes.

Close up with my mask...ready to get this started. 

I am now one down, with 32 treatments left to go!! I'm praying that this 33 visits goes by quickly. Also praying that my anti-nausea patch works now that it's been on for 24 hours.

Sunday, April 9, 2017

Spring Break in Yosemite Day 1, the drive up and through the Park.

This year, Josh is at a different school (Middle School), which happens to be in a different district for our Encinitas schools. Sadly he has a different schedule that the elementary school and only had one week off for Spring Break instead of the two the elementary school has. So we decided to take our motor home up to Yosemite as that is one National Park we have not been to and it's in our own state and I have always wanted to visit it! On our drive up as there wasn't much to see on the 5 freeway heading north, we played Clue several times as well as the game of Life. The boys played and then I joined them. Anything is better than fighting kids and my kids love board games!!

Both Josh and Zach (and hopefully Ben in the future) have had Mrs. Mills for their 5th grade teacher. She used to live in Fresno and puts it in each of her classroom plays, of which she is famous for, in the school. So of course while passing through we had to stop and get a picture by the famous town sign!! My boys thought it was the greatest thing, but not so much the town. Although I am sure it has changed a lot since Mrs. Mills was a teacher there, it seemed like most any big city with all of the local stores, because we had to stop and stock up at Trader Joes.
After we arrived in Yosemite, we went to the first waterfall. We did not camp in the park as we only booked the trip a few weeks before and every campground in the park was sold out. We ended up staying just outside of the park on the other side. On our drive in we stopped several times at anything we thought looked interesting.
 Bridal Veil Falls was our first stop! It was gorgeous, but so very cold for us Southern Californians who are used to warmer weather this time of year. We froze as soon as we hopped out of the motor home and rushed up to a good spot to see the falls.
 After taking a few pictures closer to the falls, we rushed back down towards the motor home, but had to stop for the snow where after this picture we all touched it.
 Then we rushed back into the warm motor home and drove off to discover more.
 We discovered a trail to Lower Falls and saw much more snow. By this time we all had our jackets on. Lower Falls was a fun, short, easy trail and we were able to see Upper Falls at the same time, but we knew we wanted to hike to Upper Falls another day.
 Then we were off to the visitor's center where the boys climbed into a tree trunk and we picked up their Jr. Ranger books to begin filling them out, so we can learn as we go.
 Because of all the rains we have had, there were heavily flowing rivers as well as wet trails and sidewalks.
 There were many scenic places to take photos in the Park. Next to and over rivers, near water falls, on hiking trails, as well as of all the beautiful green areas and carved out rocks.

 After a day of driving we were pooped and ready to head to camp and get it all set up before the sun went down.

Thursday, May 5, 2016

Four months...what?!!!

Insurance is a funny thing and so are husbands....when they forget to make the insurance payment. Which mine did and I realized when I went to pick up my prescription for my anti seizure medicine. I put in a quick call to the insurance company who was so nice and said that all we need to do is fax a letter stating that we want it reinstated because they "want to keep our business and won't give us a lapse in coverage." Sound too good to be true?

It was.

I called again and was told that it was only a 50/50 chance that they will reinstate me, which was the worst thing in the world to me at that moment (and of course I was on the phone about to walk into Ben's classroom to teach Art Ed in tears), with my appoint for an MRI 2 days later. That night I tossed and turned, unable to sleep. I finally decided I would post a nasty tweet to HealthNet, so I did.
And they replied. I emailed them my info as requested and received a call at a decent time in the morning, not 2am when I sent it! I was told that we had to pay $1500 for the missed payment and the next payment, so I paid and was told it would be reinstated, and I was hopeful that I'd make my appointment the next day. But I was a little too hopeful and the hospital called saying there was no insurance on record, so again I called the insurance who said it takes 24-48 hours. To be on the safe side we pushed my appointment back 3 weeks to be sure I would be covered for it.

I received a call the day before my appointment and was told that my copay for the MRI would be $2900, so I assumed that meant insurance was going to cover the rest.

I made the trip up to Beverly Hills alone this time and haven't in over a year, since it's so stressful to me. Of course this was the trip I went alone because when I went to registration they said insurance wasn't going to cover it. So to make a long story short, who ever called me messed up and didn't enter that I was covered in their system. While they pulled their heads out of their asses, I missed my MRI and was finally squeezed back in and only ended up being 30 minutes late to my doctors appointment.

Because I was not on time for my appointment there, I was squeezed in again, and made to wait for a bit in the room which makes me nervous because that's usually when my oncologist reviews my scans. It took for what seemed like forever for me to be called back, and when I went into the room to review my scans, I think he saw a worried look on my face, because as soon as I walked in he told me to breathe and that they looked fine!!! YAY, that's the news I wanted!

There is a reason Dr. Rudnick and I are smiling, my clean scan streak continues and insurance hopefully has all of the kinks worked out and my husband remembers to pay. I'm sure after this he'll never forget again!! Thank you all for your prayers.

 When it was all over I drove through Hollywood into Studio City to meet a friend (from a survivor trek to Tahoe, which I still need to post about) for dinner to celebrate.

My friend Sarah and I had raw blueberry mojitos at a vegan restaurant, so they used a raw fermented juice (tasted like wine) in the cocktail

We took a few pictures after we ate. It was wonderful catching up with her. I loved every minute of it and dinner was delicious!

And with her up there, along with a high school friend I will always have something to look forward to and someone to celebrate with. Never again will I go 4 months in between MRIs, even Dr. Rudnick thinks ever 3 months is perfect, Next appointment is on August 3rd. So much life to be lived in the next 3 month, including jumping out of a plane for the first time, kayaking in the Smokey Mountains, Josh finishing elementary school, and summer vacations, girls trips...lots of living, I'll be busy!

Thursday, April 21, 2016

Clean Scan Streak

First I want to apologize for not updating this like I thought I would. I have been out living my life and trying to enjoy as much as possible with my family and writing this blog takes away from that family time I cherish so much.

I have been on a clean scan streak since my last surgery in November 2013, yay me!! I did a year of chemo, so I wasn't surprised that every scan came back clean during that year, however they are still coming back clean!!

No I am not in remission and that is one of the questions I get asked often and hate the most, because I wish there was a remission to brain cancer. I do realize other oncologists tell their patients that they are in remission, but my oncologists believes that is just their way of putting the patients mind at ease and that it will continue to grow even though it is not visible on the MRI. I have absolutely come to realize this as a fact and you know what? I'm OK with that. I'm a fighter and in the battle of my life and knowing I have to fight the rest of my life will keep me doing just that. I don't want the doctor to tell me something to sugar coat it for me and make me relax and possibly slack on healthy eating only to have it come back with a vengeance, I'll continue to fight with every thing I have and to live my life to it's fullest, enjoying time with my children.

We returned recently from a wonderful Spring Break road trip, those posts are coming soon, I promise!

Thank you for your continued prayers and positive thoughts.

Thursday, March 19, 2015

Cooking Cubs

My boys are getting older and definitely more independent. They've been helping me with dinner for as long as I can remember. Recently though, they have been taking more of an active role, cutting, stirring over the hot stove, and even making their own snacks after school. They're cutting their own apples and putting peanut butter on their plate to have an after school snack. My husband Sean has even taught them how to make scrambled eggs for breakfast, although we've never let them do it unsupervised. One of us is always there to help them out or coach them. After all they're only 10, 8, and 6 years old.

I always make my boys an after school snack, and lately they've been trying to take over and make it themselves. I just got the book, "The Berenstain Bears' Country Cookbook, cub friendly cooking with an adult" by Mike Berenstain.

First thing I did after we got this cook book was to have my boys sit down and select something to make. I told them that they could pick anything and that I would help as much as needed. Being vegetarian, this book is actually very vegetarian friendly, so I had no worries about what they'd pick.

They selected the recipe they wanted to make and pulled out all of the ingredients.

Zach used the toaster oven as the bread was to be toasted. I supervised with this, and helped him remove the hot toast.

While Zach toasted the bread, Josh cut up the banana. I figured with him being the oldest, he could have that job. Although I do allow all of my boys to help me cut foods that we use in meals.

 Zach is my biggest helper and was most excited about making an after school snack. He took the lead and my two other boys helped as much as they could, or as much as Zach would allow!!

Zach told Ben what his job was in creating this after school snack.

And Ben was more than eager to help!

All of my boys took a part in creating this snack. It was great to see them work together as a team and it is great knowing that they are able to make an after school snack without my help (or without too much help and instruction from me.

And a nice healthy after school snack was made by my children after following the directions in this kid friendly cook book. 

And then they ate while doing their homework!

The Berenstein Bears' Country Cookbook is very "cub friendly." It offers 40 recipes for breakfast, lunch, dinner, and dessset. I was actually shocked that my cubs didn't go right for the dessert!!It also includes a prayer before meals. Sying grace is an important part of meals with our family. One page told all about the sweet facts of honey, which we read as they used honey in their recipe. The last 2 pages of the cookbook list the kitchen measurements, which is perfect for me as I don't always remember how many cups there are in a pint. (There are two by the way!!)

This book is available at Family Christian Store. right here.

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Tuesday, December 16, 2014

My first public speech for the mAss Kickers annual celebration of life!

I was asked a few months ago to give a speech to thank and toast to the caregivers at the mAss Kickers annual celebration of life, which happened last October. I am not a fan of public speaking, I get nervous way too easily, but in my quest (stupidity) to do 40 things out of my comfort zone before my 40th birthday, I said yes!! That lead to several calls and texts to friends about how to not only write a speech, but how to deliver it. After a couple months of procrastination, I wrote my speech a couple days before and practiced it numerous times on my children!! They gave me mixed reviews, saying it was good and that it was really sad. I think I made Josh (my 10 year old) cry at one point. So I had to explain to him that I was just giving the full story to everyone and explaining it in detail. I think the details were a bit too much for him, but he was able to handle them. It made him sad for his daddy and also made him realize how serious that first day was when we didn't know anything.

I talked about how I started to feel a pinched nerve feeling in my leg that eventually made my entire leg shake, and I said how my hubby jokingly would scratch behind my ear as if I were a dog (like how a dog's leg goes crazy when you scratch it in the right place). It was hilarious at the time, but I'm sure he felt bad afterwards when we figured out what it really was. And I think one of the hardest parts for my son to hear was about the night (or wee early morning) I had a full on seizure and after he saw me in a coma with blood running out of my mouth and how I looked dead. That is the exact time that Faith and Zach walked into my bedroom, and she swooped Zach out, trying hard to not cry in front of him, but thinking that I was dead. How awful for a husband and child to think you're dead. Thankfully I wasn't.

Josh didn't quite (thank God) understand the part in my speech about the more than dozen firefighters in my bedroom and how I missed out on every women's (including my own) fantasy. But he'll figure that out in a few more years....

I think the talk about my hospital visit and all of the different diagnosis I had was a bit strange to him. "Why didn't they know what was wrong with you, mom?" But he sure is grateful that I didn't have breast cancer that metastasized to my brain giving me only 14 months to live. And of course he doesn't understand the waiting game we had until we finally figured out what exactly I had, nor does he remember it. I had a second surgery a couple weeks before Christmas and although I had the initial pathology report from during the surgery, I did not get the full report until a couple weeks after Christmas, because although hospitals don't shut down doctors offices do and we had to communicate with the surgeon to get the final results.

The final results of a stage 2 astrocytoma is what I still have today, even after 4 total surgeries and all the growth that took place in between surgery 3 and 4.

I also discussed how as a caregiver, my husband thought for better or worse, meant that worst would be PMS and that our new term for PMS is "P"re "M"RI "S"yndrome, and he definitely has had to deal with a lot of my anxiety throughout this entire journey as well as be a mom and dad to our children at different times. But through it all, he's been by my side and a huge help to our children. Even my children have been a huge help to me. Faith is always around to watch her little brothers when we need her to. Josh is the oldest boys and he is able to keep a quick eye on his younger brothers if I need to lock myself into a room to speak with the doctors or if I need to rest because of the chemo. I can always count on Zach to unload the dishwasher or pick up anything that needs to be picked up. And Josh will almost always help out his little brothers.

I also explained in my speech that I am not a statistic, which I have said on multiple occasions. And had to explain to Josh a few times when I was practicing on him. Like I told him, I'm young for this type of cancer (every time I go to the doctor's office, I'm always the youngest person), I'm fit (is the average american fit and healthy), I'm vegetarian and eat mostly organic and non GMO food (is that an average or statistic?), so I believe I don't fit into average or their statistic. I'm doing all I can to fight this thanks to Josh, Zach, Ben, Faith, and my super hero hubby, Sean!!

I guess my speech was successful because they all clapped, lol! But I was so happy to have it finished. I put all of my notes on my phone so that I wouldn't be reading my own story that I have known for the past 3 years almost, so once in a while during it I peeked at my phone, but just spoke from my heart for the rest of the time!

I felt great speaking in public and being able to share my story, I think I would like to start doing more of that and may start with the Relay for Life by speaking at their events next year.

It was also great checking another thing off of my 40 before 40 list!!

Here are the photos from my speech. My children were there, only they didn't end up in any photos...oops!!
Snuck up on the deck with Tanya, another survivor who made her speaking debut, just like me!

Clay (an amazing speaker who has the most unbelievable story) gave me a shot before my speech, I really was nervous.

And with as good looking as Clay is, I figured my hubby needed to be in a photo toasting a pre speech shot with me, lol! I had to have something help me get through, but I'm not sure it worked. I was still extremely nervous!!

Giving my speech for the first time as well as physically speaking my story publicly for the first time. Everyone said I was a natural and that I had nothing to be nervous about, but my insides were speaking a different story...bathroom please, lol!!

And since my speech was a thank you to caregivers and I included a cheers to those who carried us through the hard times, everyone cheered with champagne.

A big hug right after my speech and cheers from my friend Kristin, a natural speaker who has a great story to tell and does so many things for Cancer.

All of the night's speakers together, Robyn on the left who has spoken before and Tanya in the middle along with me, both of us popping our public speaking bubble!

Some of us mAss Kickers together. Us survivors love to celebrate life since we know how precious it is!

Shortly after this speech, Kristin nominated me to be a Hero Of Hope for the American Cancer Society's Relay for Life. I'm sure you'll see upcoming posts about this!!

Friday, November 14, 2014

How I took my final chemo, celebrating alone but in total style!!

And then there was finally my last chemo, time for the party to begin....

Or so you would think, but my family was away camping with the Adventure Guides and I was all alone at home for that final dose,

and this is how it went down.....

I HAD to do it in a way that was celebratory for me...alone and I was not allowed to have alcohol. There are so many restrictions with chemo, but I'm sure I've already gone over all of that.

So, for my FINAL chemo dose (alone, let me emphasize that over and over because it's strange celebrating alone for anything, but this was something I had to celebrate for me).

And here we go....

I took out my old personalized wedding champagne flutes and poured some apple juice from a small kid's lunch sized box that I stole from my children, loaded my last 3 pills into the lid (because I'm not allowed to touch them, another restriction...), then took one big swig and tried my hardest not to smell them as the smell alone makes my stomach turn and my throat want to close up because they were the most awful thing I have ever taken in my life.

There is that last dose and hopefully I'll never have to take it again, although I am allowed to take it one more year if ever needed. Please pray that it is never needed again!