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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Saturday, October 24, 2009

How to help

How am I feeling? How am I feeling? How am I feeling?
I feel like a woman with a tube coming out of her lung.
It's raining. It's cold and dreary.
X's soccer jamboree was canceled.
We could be stuck inside all day doomed by the weather.
We're not. Let's not let the picture get bleak. I made an appointment for the boys to get a haircut. We're going to see Astroboy then coming home, eating left overs and playing board games.
Life is good.
Mom's back in Mass with poor Heather who had a kidney infection and mastitis.
Dad's going down today with my grandparent who move back to Florida Weds so they can see their newly born great-grandchild and replace fix the obnoxious, backyards storm door.
We opted to stay far away from that day trip.
It sounded exhausting, as much as I miss my sister and family.
My goal is to heal all up before she does, just because sibling rivalry should be used for something useful.
I just may do that too.
My air leak has sealed up.
I hope my ears will ring from cheers all over. This is serious.
I'll have the tube removed Tuesday, just in time to trek to Boston Weds for an appointment with Dr. Dana, the GVHD eye guru.
It's been hard keeping my eyes as a priority and maintaining my regimen (restasis 1 drop each eye morning and night and systaine eyedrops 6 times daily).
It's hard to care about the state of your eyes when you're having a serious major organ malfunction.
It's easy to lose the determination to keep every piece of my body in best fighting shape, especially when just about every individual piece of me needs to be attended to.
I'm one big malfunctioning mess.
No worries, I plan on doing lots of napping and resting until I'm healed.

Thank goodness Jon has been superdad this month.
I've been hospitalized 3 out of 4 weeks.
We really appreciate all the offers for help. All apologies if we didn't get back to you.
After four years, we do okay in catstrophes.
We're really lucky to have our Aunt Becky who has been cleaning our house FOREVER.
I could probably credit her with saving my marriage, because two type As in a minimally dirty house is disastrous. She's been helping us for years.
If anyone ever wants to help with this, we'd love to give her a break. We try to keep things picked up but scrubbing and vacuuming is impossible for me.
We're lucky that R& B, my in-laws, have been taking care of Xander after school. He really needs a consistent caretaker that he feels comfortable with.
When I'm in the hospital, or too sick to get out of bed, Jon goes to work at 8am and works until 4pm(instead of 7am-3pm) so he can drop Xander off at school.
We're incredibly weary and distrustful of who helps care for him. His happiness, safety, and security are our ultimate goal. This seems to be working really well so far. We're really lucky X's school and J's work are within a mile of our house, and that his company is flexible.
From how Xander's been coping with my illness this fall it all seems to be working well.
The staff at his school is amazing.
X seems really happy.
My parents and Jon coached his soccer team so I'm pretty confidant he is still getting his favorite things and family time.
Jon has been working overtime being superdad. He has been cooking meals too.
If anyone wants to relieve the stress, we always appreciate meals or anything to do with food.
We're all American: shepards pie, meatloaf, shake 'n bake chicken, pot roasts, chop suoy, spaghetti and meatballs, beef stew.
We love honey nut cheerios, gold fish, bananas, apples, & grapes.
Freezer nights are Tony or Digiorno frozen pizza or tyson anytizer popcorn chicken with tater tots (we all have them).
When it comes to helping there is nothing ever to small.
When a friend of mine had a major surgery and I had little time, I brought over frozen foods and meal planned for her for two night after I caught her sobbing because she was too weak to get a casserole in and out of the oven for her kids.
Anything that can be thrown together easily, with the least effort, is fabulous. Usually that means microwavable or heated on a stove.
Last year, my Aunt Carol made philly cheese steaks and froze them into meal size portions. My Aunt Pauline has made soups that I could freeze. These were some of my favorite ways I was helped.
I also dropped off kiddie snack that her 7 and 3 year old could get themselves: goldfish, animal crackers, puddings, juices, etc. Anything that can help the kids function independently while a parent is healing is priceless.
Phone calls to say "hi," prayer cards, emails are all precious. I generally sleep in the afternoons, but when I'm really sick I do get depressed and start to refuse to call anybody.
It's not that I don't love you all and want to talk, I'm just too damn pissy.
I don't want it to spread. I THAT could be contagious.
We're so lucky to have the love and support of so many people. We appreciate all the offers. It really never gets easier to ask for help when your independence is so intricately tied to who you are. Thanks for making it easier.


linda keenan said...

hey hill - one of my friends was just diagnosed with breast cancer, and someone passed this website along to help manage the food stuff and other ways to help someone who is sick. just want to make sure you have seen it... i so wish you were closer. i have so much time to help.
and if you need a place to stay overnight for your boston appointments because your sister is sick and her place has germs, just let me know.

here's the site

Anonymous said...

I like it when you are pissy. That means that you are getting stronger.
Keep on keeping on!

Anonymous said...

I agrree with Carol, Hillary ... love to see the feisty side of you. And particularly glad the lung seems to be healing.

Stay strong ...