Stage 4 cancer friends

I have said it before and I will say it time and time again, being friends with a bunch of other cancer girls has been/is one of the most beautiful yet hardiest relationships I have ever been in.

With your non cancer friends, you don't talk about medical trials, who of your "on-line friends" who have passed away, you don't go wig shopping, you  don't talk about what you want your funeral to be like, you don't have to schedule breakfast around everyone's chemo schedules, you don't have a dull ache in your heart when you get a text saying the appointment wasn't good...these things are NOT normal for most 35ish year olds.

No one ever said anything about this would be easy, BUT no one ever told me this.

Answered Prayers

Of course I have been praying that there would be an end to the cancer that has liked my body too much for too long but for so long nobody knew how to give me that end because stage 4 isn't in the curable catorgy.

I thought when I was diagnosed with pre leukemia I was for sure in the unluckiest health person catorgy ever.

Then I started praying harder than I had ever done before. But I didn't pray from a scared place of panic, I prayed from that thankful quite place that has pulled me out of so many other dark fearful places before...when I was sure I couldn't do another chemo, when I was going in for a 3rd brain surgery and didn't know if I had another healing in me, when I had to learn to drive again, I could keep going with all these past 8 years have brought/dumped on us but I think you get the picture?!?!  

From being thrown into this whole new world of leukemia...a bone marrow cancer. It is here I learned THIS might be the answer to my prayers. YES, I get how odd this sounds... I get another cancer and think that is my cure all?!?!

Well the only way to deal with leukimia is chemo or a bone marrow transplant. Don't get me wrong, many people with pre-leukinia never get to the point of needing a marrow transplant because they can get chemo. My problem though is, although the breast cancer has either been asleep or moved out, there is 100% way of knowing. SO, if while getting the chemo for the pre-leukimia, the breast cancer woke formed again, I could NOT get chemo for both. And well, no chemo means no good. Now, with a new immune system, IF the breast cancer showed back up, the new system would do what it is supposed to do...EAT THE CANCER!!

So yes, in a big round around way, the luekimia has been an answered prayer because without it a bone marrow transplant would have never entered the conversation.

The good, the bad, the me

We went to the beach this weekend and it was so needed for us 3 to regroup and one last trip before school starts.

I needed a break from constantly willing the phone to ring from the transplant center, Ian needed family time and Eric needed a total break from work. No one opened a computer all weekend...it was great!

These birds always amaze me...they hover around so trusting that someone is going to provide a nibble here and there.

Yes we feed him an Orea after we buried him. The whole scene was hilarious.

We always eat breakfast at this wonderful German bakery...SO DELICIOUS 

Now back to reality. I got a call telling me my white counts are in the toilet and tone super careful with germs because I have no immune system. NOT what I wanted to hear a day before school starts.

9 years ago

I was wondering how in the hell were me and Dad supposed to take care of this newborn baby we were just sent home with?

Seriously, I had NO idea what we were in for. 

Minutes turned into hours, hours into days and here we are 9 years later. My sweet baby boy is no longer a baby but a sweet, loving boy. Yes, I know you will be seriously embarrassed with me saying all this.

I can't imagine life without you to drive me crazy, make me laugh with uncontrollable laughter, tell me your joys, fears and everything in between. 

I love more everyday and you bring an undiscribable amount of joy and love, laughter into life.

Moonshot 2020

I am so excited to have been asked to write this post about the Cancer Moonshot 2020, to help spread awareness for what is happening with this exciting program. The Cancer Moonshot represents an enormous opportunity for rare cancers to get increase attention and become more treatable. Because of this, The Mesothelioma + Asbestos Awareness Center is working to get others involved by spreading awareness and talking about the topic. The MAAC is an organization that works to help those with mesothelioma, a rare cancer caused by asbestos. To learn more about this cancer head over to their page!

First, let me explain to you how I understand it because in all honesty, at first I didn’t understand it at all.

Moonshot 2020 is a colabration between many valuable resources, i.e. government, pharmaceutical companies, researcher, and doctors. Instead of each one working as an individual, they will work as one team.

I do best explaining things in analogies, so I am going to use football here. And no I am not a huge football fan, but it seems to work here! With the Moonshot 2020 in place any and everyone involved with the fight against cancer are going to come together and work as a football team. The outcome to win against cancer.

How will this work? In my mind I see it as a football game where every single person who works for the team is needed. Either to be on the football team, coach the team, coach special aspects, the fans to cheer, all the employees to run to stadium and so much more. 

The scientists, researchers and others will be the quarterback stepping back to look at the whole field to find an open pocket to call the play. They will decide if they can run the ball themselves or need to throw it, or a combination of both. After however many attempts at getting a first down, they will them decide as a team what needs to be done with the ball. It could be kick a field goal to increase the score or bring on the defensive team, who is still working with the same team just from a different angle.  This could be the immunotherapies or any other number of ideas already being researched on to stop the other team from scoring. The simplest way to explain this is a football team can’t win the Super Bowl if they only have a great quarterback.

Now back to Moonshot 2020.  How does my description above about football tie into cancer? All the separate moving parts will come together as a moving, winning football team. They will share notes, findings of what worked and didn’t work in specific tests in their lab, so other labs aren’t repeating the same studies over and over again. With them sharing information, if one company gets stuck with their progress, another lab can look at test notes and see a crack the others might have missed. One company can piggyback on another’s findings and keep the ball rolling.

With this, new eyes will be looking at the same findings in hopes of seeing overlaying information that can be tweaked here and there to ultimately find a cure!

This is going to take a ton of work from all parties already involved, getting new parties on board and more, but if we were able to put a man on the moon, we will be able to find a cure for cancer. 

The cost of cancer by Amino

With all the talk about needing to find a cure for breast cancer, the conversation rarely makes its way to a one huge factor other than saving lives. The cost of treatments.

Most people don’t think about this aspect of care until you are thrown face first into a disease that is at the moment incurable, but requires multiple forms of treatment. One thing that is not disgusted when talking about saving a life, is the cost.  

Have you ever thought about how much it could cost to keep yourself or a loved one healthy while living with a disease? I have. Living with Stage 4 breast cancer, I have seen some crazy high medical bills come into our mailbox. I am talking $10,000 for one treatment. What would I do if I didn’t have insurance?

I would surely want to shop around if I didn’t have insurance. Wouldn’t you?

I just learned of an awesome new site, www.amino.com/cost that shows you the estimates for ~50 medical procedures and services nationwide across dermatology, diagnostics, men’s health, orthopedics, preventative care, surgeries, and women’s health -- including mammograms (diagnostic & screening). 

The tool lets you:

·  Compare cost differences in your region based on your insurance.

·  Calculate what you might pay from your own bank account with an out-of-pocket cost calculator.

·  View and compare cost estimates for individual doctors–and book an appointment with the doctor of your choice for free through Amino.

Here is graphic to further break it down.

Click the link below:

Greater Austin area:

If you knew these numbers beforehand, would it help you make a choice on where you went to get treated? Now with the help of Amino.com you can know the numbers beforehand and not have bill shock when you open the mail.

On paper

I was sent a packet of information to fill out as to why I should still be able to receive social security...basically prove I am still disabled even though my scans show clean. Because the way they see it, I should be able to preform my old job as an assistant property manager…maybe I should have them talk to my old boss to see what all that job actually requires.

What my scans don't show are how I have zero ability to multitask, when I look at a computer/phone/TV too long I get a massive headache, that when I get flustered my first response is to cry because I am mad at myself and embarrassed, and that doesn’t even take into account me driving…how driving more than 15 minutes leaves me exhausted even if traffic isn’t bad, how on chemo weeks I can sleep 16 hours a day…unfortunately this list could go on and on.

So there I was with Eric filling out this packet of information, and it came to the current medicine part. This is where I lost it. I had just received 4 new prescriptions that I need to start taking for the bone marrow transplant, so I was filling my pill box with all this new stuff. I was telling Sara about the SS BS, while I was doing this and broke down. I said THIS TABLE FULL of RX does NOT look like one of a healthy person, and I don’t understand why I am having to go through this stupid shit?!?!

We got the paperwork back in the mail, I cried more and then I decided being pissed at them and mopey about it was not going to change anything. So we all went swimming and now we wait to hear back from them.