Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

Get a playlist! Standalone player Get Ringtones

Saturday, September 17, 2011

Scraping By

The rug was finally pulled out from under us financially, and the sky didn't fall. We still have a roof over our heads, and food on the table thanks to a great couple who sent us grocery cards and a lot of couponing, bulk buying, and freezing during previous months.

We have never had a checking account with less than 75 cents before, but luckily, we've been able to pay the bills. . . . . with a lot of help.
Free Outdoor Boy Activities: Frog catching
and Blueberry picking.

We've made it through the month of August. The month where our bills are the highest.

The pain in our wallet starts in July, actually, with our bi-yearly taxes. There goes $4000 just at the time when we are trying to enjoy our annual summer vacation camping in the mountains.

Camping in the mountains is not an extravagant vacation. I think White Lake has increased their rate from $14 a night. We owned our camper and equipment before my illness. We rotate cooking meals so eating may be even less expensive those two weeks.

Our outings include spending our days at the beach, the kids ride bikes, make friends. We go on hikes, feed chipmunks and bond as a family in our filth around the fire.

If it's raining we will hit the tax-free outlets in N. Conway for some "back to school" shopping. I suggest everybody does. There designer clothes may cost less than at walmart.

It's good times.

It's also a tradition X loves. He tried to get a sumer job this year out of fear that we wouldn't be able to go. This "vacation," as hard as it can be on my body, is not negotiable.

Then August hits, along with our birthdays.

Birthdays were fun before the age of 18 and owning anything that needs to be registered. Now, birthdays are a big financial drain. We register our two cars and the camper. We also have both cars inspected. With our luck this year both cars needed new breaks, front and back.

Thanks to Lambert Auto and our wonderful lifelong friend Lew, I received mine for free, which has allowed me a car to drive and for us to continue to eat well.

Jon and his father put in J's the front breaks themselves, turning what was quoted as a $400+ job into a $100 job.

It's a huge relief to know we have safe cars to drive, at least when I'm safe to drive.

My rapid cancer re-occurence and travel to NYC every 3 weeks didn't help the situation.

Again, my parents came to my rescue. My mother has taken me the past two treatments requesting that I only cover the hotel and parking, which is nothing compared to the gas, cabs, meals, and snacks.
The new pic hanging in our room:
 Lovebirds: X swears if lovebirds
 are in the house, everyone
will love each other. 

I've been dreaming for a long time of the day that my writing will pay off, or somehow we'll be given the break we need to live comfortably and in good health, so we'll be able to function independently as a family. My biggest hope is one day we'll be able to give back what we've been given in a big way.

The same way all I can do is hope and pray that my cancer will stay at bay, I'll continue to hope and pray for the opportunity to be financially stable and help others become the same.

We are so fortunate for everybody in our community who has banded together to help us as we struggle.
I didn't think there was any space left to cut in the budget, but I've found some.

I always had leftovers of my Anakinra eye drops, which was costing me $150 every 3 weeks. With anakinra, once the expiration date hits the drops are useless. I altered the prescription to receive half, hoping that I can protect my eyes for $75 every 3 weeks instead of the $150.

My foray into alternatives has stopped again, partly due to finances and partly due to my receipt of SGN-35, or whatever it is called now.

The medication is so new I don't want to cause any problems.

I have the last batch I ordered, while incredibly sick, in the fridge for when I need them, but spending $150-$200 a month on an unknown can't be done now.

Working with Leather! The was custom designed for Kiki,
custom work can be done for you as well. 
I'm starting an etsy store with a help of a frand (a friend and fan). The site is I have a few items for sale all ready. I'm working on posting more, and trust me, there is plenty more. Thank you everybody who has sent me beads or their vintage finds from yard sales. I'm having fun breathing new life into forgotten unloved pieces. Now, every time you buy from etsy, you'll receive a signed picture biography of the person/caretaker who created it so you know who you have helped.

Slowly, putting one step in front of the other, we are getting past this very difficult time again. Despite our trials, X seems happier than he has been in a long time, and that may be partly because Jon and I are happy and comfortable with each other. It also may be because he is back in a routine, or that my treatment appears to be going well.

Who knows?

We're coaching his soccer team. Both of us are physically helping. He's also traveling with a U-8 team that he loves. He's singing around the house and making jokes again, a surefire way to tell he's in a good mood.

We're lucky to have each other. Money can't buy that.

No comments: