Monday, October 30, 2017

Sorry for all the new posts....had to transfer my CarePages onto here.

Again, so sorry if you got a ton of new posts in your email. My hope is that by transferring them all in one day (and before midnight eastern time), they will all be on the same email. CarePages is shutting down tomorrow and I wanted to save my posts. It was pretty emotional reading through them at times and funny at other times when I realized how naive we were in the beginning, Although it's not something I ever thought I'd be educated on, I now know way more than I ever wanted. I'm hoping that tomorrow I can make my end of chemo/radiation post with photos. Chemo ended on 10/22 and radiation on 10/26!

Friday, October 27, 2017

It's so rad to be finished with Radiation and Chemo

Welp, rads (radiation) ended yesterday and chemo ended last Sunday (10/22/17)!! I was so excited to finish and had my 7pm appointment so that those who wanted to be there but work could go after work, but then I was called in the morning and asked to go in to see my doctor. I am happy that I did because some of my favorite techs were working during the day and wouldn't be there at night for me to get a photo with.
 I had such a great team working on me. The women totally understood how it felt when I would remove my hair piece (a head band at first that progressed into a wig) to get my head radiated, and I cried several times only to get an understanding hug. 
 This guy above was with me on day one and for the first couple of weeks, then he was moved to another machine and would be on my machine at random times.
 This is my friend Clay and he met me there during the day as he works at the hospital and wouldn't be around for my ringing of the bell. He's in a local commercial for the hospital and I thought it was funny when the nurse said he looked familiar and he responded that he worked at the hospital and then she said " you're the guy in the commercials."

 After radiation I showed off my mask to everyone who came to see me ring the bell and then I rang the bell. Followed by lots of photos!!
 My family and favorite supporters with me ringing the bell.
 Lots of friends and my uncle came to see me ring the bell, some more amazing supporters!
 Then a quick picture with the two techs who were with me on my last radiation. The man, Phil, on the left was there from the beginning, my very first day. The gal on the right started about two weeks into my treatment as she was moved to my machine. She was the one I cried to the most when my hair started falling out and she would just hug me. It's funny how much a hug can make someone feel so much better.
And then to check another thing off my bucket list, my Uncle Charlie let me ride on the back of his Harley to the ice cream shop where we stopped to get my kids a treat as a way to celebrate!!
 Once home all of my kids got a ride around our culde-sac
 Zach was so excited to ride, probably the most excited out of all my kiddos
 Ben and Josh took a ride
 And finally Faith took a ride.
 I must admit that I wasn't going to allow my kids to ride it because I always thought motorcycles were scary and dangerous. On my ride home, I was shocked at how safe I felt, so I knew my kids would be fine riding around our culde-sac!
 Cutie pies Ben (above) and Josh (below) try on the helmet I wore.

 Then, Sean, Ben, and Zach took turns sitting on the bike alone. I think Sean would be in Heaven if he had a bike, although I don't think his mom would ever let him. I would, but that is only recently (post diagnosis) as I am now under the mind frame that life is short and needs to be lived to it's fullest.


I am so grateful that this part of my journey is over! It was long and had many challenges, mostly the timing of my appointments coinciding with traffic, my being very tired (usually going to bed around 7pm or as soon as I got home from radiation).

Tuesday, October 17, 2017

Goodbye CarePages- CarePages

Goodbye CarePages

Posted Oct 17, 2017 3:04pm

Edit: REPOSTED FROM CAREPAGES

It seems CarePages is going out of business and all pages, including this one will be gone at the end of the month. I am going to try to transfer as much of it as I can to my blog. I know I'm horrible about keeping up with it, but I'm going to try. For future updates you can look at...
Bucketlistfamily.blogspot.com
And if want, you can sign up for email updates. I am going to try to start posting weekly, but my priority is spending time with my children, so don't get your hopes up. There are photos on there, which is cool.
On a side note, treatment is going well. I have only 8 more radiation treatments out of the 33 total treatment, ending on 10/26. And only 6 more doses of chemo, ending on 10/22. Whoop whoop, I'm so excited to be done with this part of treatment.

Friday, September 15, 2017

Birthdays and Radiation

As many of you know, my first 3 children were all born in September with the first two sharing a birthday (September 14th). Believe it or not, my 3rd was due on their birthday but came a few days early (September 9th).
This year Faith turned 22 and Josh became a teenager!! Because 13 is such a special birthday we allowed Josh to pick any restaurant in La Jolla (where my radiation hospital is located as I had it right after). We offered popular and expensive Hibachi Grills and Fondue restaurants, but true to form, Josh chose his favorite, Islands, because of his love for veggie burgers!!
 In the end there were 3 desserts at our table to share. We celebrated Zach's this night as well because he had his party on his actual birthday and never had a birthday dinner out with family.
 A couple attempts at selfies in the radiation waiting room. I know I look bald, but I am not. My hair is pulled back and I'm wearing a headband.
 I had to continue taking them until I didn't look bald as I know that is coming very soon!!
 Everyone went back into the radiation room with me and we took a photo which will probably be on our (spoiler alert) Christmas Card this year.
In this photo you can see me in the background with the mask on my face and yes, I am unable to move. The big dude on the left of this photo is my daughter's boyfriend Nicco, who after 3 years is basically a part of our family now.


Today was radiation number 4, so I have only 29 treatments left!!

Wednesday, September 13, 2017

Mutant Cells- CarePages

Mutant Cells

Posted Sep 13, 2017 11:32pm

Edit: REPOSTED FROM CAREPAGES

Yesterday I got a call from Dr. Bush, my oncologist up at UCSF saying the DNA sequencing showed that I have 179 mutated genes out of the 480 genes. Apparently this is very rare and I am considered "hyper-mutated." It appears that the chemo I took for a year in 2014 is what caused my tumor cells to mutate. This is the same chemo I am currently taking and that scares the crap out of me. Now my oncologist at Cedars Sinai wants to see us to discuss this. It sucks and I'm bummed. Hopefully something can be changed in my treatment plan, but as of now I'm told this "standard of care" is the only thing they know even if it is pushing me closer to death.

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.

Friday, August 11, 2017

2 week post-op doctors visit- CarePages

2 week post-op doctors visit

Posted Aug 11, 2017 12:45pm

Edit: REPOSTED FROM CAREPAGES

I did not get the news I had hoped for at my doctors appointment 2 days ago. I wish I could turn this around in my brain, but for the first time I'm really struggling. Struggling to wrap my mind around the term "advanced stage" and high grade. I want to go back to low grade and slow growth.
I'm in a complete state of shock. I feel like I just went from wanting to see my baby graduate from high school to hoping to see him graduate from elementary school.
I now have grade 3 anaplastic astrocytoma and it sucks. I'm mad, pissed, and scared.