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."

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Friday, April 22, 2011

My Thoughts & Priorities During Crisis

I started to write out all my stressors hoping to help people understand the way I think, the way other sick parents probably do, but now I'm just stressed about finishing this. It was started almost a month ago I think. Here are the goods:

With my feet finally under me, I'm processing in my mind my priorities and I'm ready to put them on paper.

I've always wondered what, exactly, other people think and stress about.

I think people misconstrue what I worry about. The mind of a seriously ill twenty-something is a new concept with little research and less written.

I wonder if my worries seem insignificant to others in regard to what were experiencing, but what I've found is life marches on. I have my health stresses, but I also have my lief stresses that any other wife, mother, woman can relate to.

1. Get Healthy, regain energy

2. Keep X and J happy by being active, scheduling playdates, birthday parties, going to movies, picking up the house, keeping it organized, controlling spending, bringing in some extra money, organizing the schedule.

So in the midst of having my kidneys fail, recovering from chemo, and having a massive allergic reaction this is what I've been concerned about:

Of course, there is my health. This is a constant worry with all my treatments.

 I'm wondering, do I have all the medications I need? How am I going to get my medications? Do I have any appointments? How am I going to get to my appointments? When I'm at my appointments who is going to take care of x? how is he getting to school? From school? Who is taking care of him after school? And whoever helps me with all these situations, how am I going to repay them? What can I do so we have a quid pro quo relationship? Who do I need to call and what do I need to do to get all these things in order, when am I going to have the time, the energy, and the health to do them and how am I going to remember to tell everybody else involved whether or not I have it under control? And how much do I owe them?

Finding rides to the frequent appointments is the worst. With me unable to drive and the long distance, I understand I am asking for a substantial time commitment. I am so lucky I have a large group of family and friends who understand this.

Sometimes, we work it out so I am dropped off at the hospital by one person and another picks me up.

Other times, I alter my treatment and accept what I can receive locally at The Kane Center in Claremont, such as IV hydration or neupogen injections, which I can get to myself.

But with my reliance on others comes a substantial amount of guilt. People are sacrificing there time for me, and I have little to offer in return.

But I still try.

I offer to use my car for the trip, pay for gas, buy breakfast/lunch, etc., design jewelry, even babysit. If someone says they "like" something I own, it usually shows up as a present to them in some way or another.

I don't want any relationship to be one-sided.

I've been deeply hurt before by people who rejected my offers for payment, job assistance, or goods in return for their help, and then told other's I greedily took from them, offering nothing in return for their kind deeds.

But I know all of these things, these offerings, are not needs or necessities. I just pray and hope my loved ones won't come to resent the help I need. I try to be fun and amusing company, even at my worst, at my sickest.

Organizing life is the hardest, and These worries are with me always.

But right alongside, barely close behind is the worry for my family, specifically my immediate family  Jon and Xander- Are they happy? Is X distracted? Does he have sufficient play dates, sports, outings, events to cope with his stress. IF he doesn't, I arrange them. I also cook him comfort food. So while I'm sick, I'm still playing super mom making cookies, planning play dates and birthday parties.

X's happiness goes hand in hand with Jon's. How is Jon coping? Is he angry? Has he become snappy. Is the house clean enough for him? What do I have to do to make his home coming as easy and happy as possible? I try to organize the house and pick up to his liking. I try to have X behaving by having him run outside or do any other physical activity. What will he want for dinner? Is it out and ready to be cooked?

Jon does the cooking, on the rare occasion I can, I try. I at least attempt to plan the meals so he doesn't have to stress over that.

Then, with adult relationships, do we have enough money in the accounts? Has anything been bought that he'll be unhappy about? Has there been a change in schedule he needs to know about or something I've forgotten to tell him?

Basically, I do everything I can to make and keep him happy if I'm able.

This doesn't mean I don't have bad days where I snap, get pissy, and we fight. I just never want that to happen.

My immediate Family doesn't stop with Jon and Xander though. I worry deeply about my parents, how their feeling, how their coping, and are their needs being met? Am I monopolizing too much of their time and possibly handicapping them financially? What can I do to give back for all the good they've done for me. I know i wouldn't have survived so long without them. They are my rock. The ones I can call anytime and know they'll rescue me.

How do you repay that?

Well, I know I don't have to, but I want to. I also have always loved to work with my Dad. Through out my illness I've tried to keep up with assisting the family business, Five Eagles Design, LLC. 

So pay back and contributing to my immediate family includes trying to bring in extra income through donations or assisting in projects.

Jon I try to put in charge of repaying his parent's for their help. It just makes more sense, but when you get to the knitty gritty, I'm stressed about finances.

I'm always stressed about money. I didn't think I have a life threatening disease and would constantly worry about funds and come up with side businesses or way to increase donations, but that's the world we live in.

This stress is enough.

Then there is the worry of the purity of my soul.

Finally, my disease process is a concern, but unfortunately, researching, intellectualizing, thinking new theories and acquiring new treatment regimens is only possible when I have all my basic needs met.

I have to overcome everything listed before this before I can research alternatives or even alter my lifestyle for a better diet.

Money is the huge, insurmountable issue that paralyzes me in trying, not only innovative complementary therapies,  but maintaining a healthy, anti-inflammatory, anti-cancer diet.

Food is expensive!

I look to herbs mostly in food now. They are expensive upfront, but only need to be purchased once every couple of months. Parsley ad tumeric are two of my favorite cancer fighting herbs.

Thanks to all your support through the purchase of my jewelry and some donations, I have been able to reach out to some alternative practitioners.

I did consult Dr. Moss @ $800 for his publication and phone consult, which only lead to referrals unfortunately.

I'm still taking my kineret, the cure for GVHD of the eye at $150 every 3 weeks.

I am meeting next Thurs. evening with a Dr. George Wong, a Chinese herbalist, while traveling to NYC for a fee of $350. This does not include his recommendations. I have always wanted from day one to delve into Chinese medicine. I dabbled in it during college, roaming the apothecaries in Chinatown sometimes with a Chinese friend who could/would decipher the labels. 

I'm purchasing a past regimen that I took with success in the summer of 2008, a treatment that regressed my tumors, while I'm in NY as well for a likely cost of $150-200. I'm purchasing two of the regimens so double the cost, $300-400.

Hopefully this gives you an idea of where your money is going when you support us.

And now, I have to go, just writing this is stressing me out.

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