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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Wednesday, October 29, 2008

Breakfast- Cheerios with 2% milk, one cup coffee, 2 honey buns (my weakness)
Snack- H2O
Lunch- Whole wheat bulky roll with cheese & turkey (pre-packaged & heated), green tea
Snack- H2O, Tea, slim jim’s
Dinner- Shake n Bake Chicken, green beans, water
Total H2O intake: 1.5 L
Alanna had a good idea about posting my meals so others could understand what an accepted BMT diet consists of. I think this is great. I finally got my video on. I’m going to work on making this part more visually interesting.
We can do this Bridgette Jones style, except, I won’t be counting calories and cigarettes. I’m not a wild girl right now. I’m a fragile girl, and an up-and-coming health nut.
I’ll be counting food and water intake. EXCITING!!
I won’t be posting my weight, unless it’s measured. I don’t have a scale. I look, poke, and prod at my body to see if it looks the same. I compare myself to my sister’s weight, anything around 118 lbs is normal.
Fortunately, I’m so excited, I can cook! Last transplant, I could not eat, forget about cook, but I’ve worked on feeding the family into the schedule.
It’s all about knowing your limits. Know your personal schedule. Know when you personally have energy to accomplish goals. Set a schedule that is flexible. Include naptimes.
I prepare dinner in the morning and stick it in the fridge or slow cooker. Who ever invented the slow cooker is a genius. This requires planning ahead. Meat must be thawed in the fridge. I take frozen meat out of the freezer the morning before if I plan to use it for dinner the next day.
This takes incredible planning and organization. Cancer, in general, requires these traits. If cancer had a job description it may look something like this:
Must possess patience, flexibility, organizational and planning skills. No degree required. Must be willing to take initiative and complete any task within your physical ability. Must be willing to travel frequently for testing and meetings at a moment’s notice. May require overnights without reimbursement. Poorly compensated stressful, erratic schedule. Must be willing to put cancer first, take complete responsibility for your care while not under the hospital’s watch. Must be willing to sacrifice worldly roles and family for a period of time, must be aware that this will be a struggle and a life changing experience. Must know a range of medical terms, treatments, and techniques. These will be learned on the job. Requires determination. If you have any questions, you may ask your doctor or health practitioner.
Does this sound like fun? Absolutely not, but on my bad days, I approach cancer as my job. It is something that must be done. Ive worked out a tentative schedule to make life easier.
My schedule looks a little like this:
Whenever: Wake up, shower, coffee and breakfast (Always eat breakfast, it’s the most important meal of the day. Morning Meds
7:30- Wake up X and get ready for school. Take Temperature (86.4)
8:15- Jen picks up X or I will drive him
9:00-take meds (if I forgot them), prepare dinner if necessary
9:15- Rest, watch TV, blog or read
10:30- Exercise: walk, dance, yoga, trampoline, etc
11:30- Lunch, meds, Temp (96.6)
12- Rest, read, write, etc
1-2:30- Rest/nap
2:50-3:00- X home!
3:00- play with X
5:00- Dinner
6:00 Meds & in bed. Temp (99.9)
Completely exciting life, I know. It’s hard to fit in social time between my busy schedule of resting. I have squeezed in some home projects, then I get exhausted and cranky. Im going to start seeing some guests slowly but surely next week since I ONLY HAVE ONE APPOINTMENT IN BOSTON!
My line will be removed tomorrow, and I’ll get some more labs. Maybe, I’ll get some different prescriptions, but my line is done and getting pulled!
The fevers, which you probably noticed, are not significant since they are under 100.5. Who knows what they indicate, but it’s not an infection.
More good news, YAYAYAYAYA!! I’ve woken up extremely early this morning, but I don’t see this as a problem. I’m following my body’s rules right now. My body wanted to be awake at 4:30. I have things I can do by myself in the am. Ill probably take a nap by 10 am as it is, so there is no reason to restrict myself from sleeping whenever I feel like it.
I received a letter from Dana Farber yesterday, the first one I was excited to receive, informing me how I could contact my donor. We can have anonymous communication for two years. I didn’t think I’d be the girl who would get all excited to meet my donor, but I am. I want to meet her now! I want to know what language she speaks so I can write appropriately. I’m voting French, dark like me.
I think I’m restricted from sending her nice presents, but I will. I have her handmade card all made and picked. I want to know where my DNA came from. I think it feels like an adopted child trying to find their biological parents (even though I’ve never been in the situation). There is an innate need to know where the essence, the building blocks of your body, has come from.


Anonymous said...

Hi Hillary,

Good morning! I have only met you once briefly (at a KSC meeting on a Saturday in Hale building) but know your dad and Frank who brought me into your circle of supporters.

I checked into the blog this morning and saw that you were up bright and early so thought I would say hi so that you knew that we are reading!

I have to agree that the creation of crock pots was a stroke of genius and use mine regularly as a single working mom who is not a particularly good cook. It is the one kitchen device that I have never burned food in!

Work, work, sounds like that is all you are up to these days (-; but it is your job and the most important thing you can be doing. I encourage you to continue to listen to your body's rythyms and wake when it says to and sleep when it needs it.

Fall is also the time when nature is telling us to nestle in and prepare for the winter so cuddle up for a nap and relax. You not only deserve it, mother nature thinks it is essential. Next fall you may be busy with raking leaves!

Okay, now back to work....your boss might be watching.

My best.....Melinda

Anonymous said...

Good Morning,

I am so happy that you are having time to spend with your precious son. I am certain that he is delighted to have Mommy home again.

Glad to know that things seem to be going well. Loved the comments about cooking in the crock pot.

As for the donor, I am sure that she will love getting to know you. You are a really special person.

Next spring, plan on visiting Savannah during March when the azaleas are in full bloom and we have the best St. Patrick's Day parade in the country, after New York of course. But I suspect that we have more fun! Until recently, we had contingents of NY police officers come down for our parade. Unfortunately, they had so much fun, they were not invited back last year. LOL!

Take care, and know that we are out here rooting for you.


Lina said...

I like your job description but I don't have the determination or will like you do. You put me to shame! eek, hopefully, my boss doesn't walk in on me commenting on your blog. ^_^

Anonymous said...

Here's another idea for you....I recently purchased a pressure cooker and have been experimenting with it. They say you can put frozen meat right in it! I made chicken stock last night from the leftover bones I had from two rotissarie chickens I had used for dinner. It only took 15 minutes and tastes really good. I made a pot roast, but the meat was slightly undercooked (45 min) and the veggies were dead (15 min). I made really good pork ribs in it and it only took 20 min! They were very tender. Perhaps someone you know has one, just hanging around and would let you borrow it.


Frank said...

You put me to shame Hill ... hell, I can barely handle Lean Cuisine. But now you have me wondering if slow cooking them might result in a different meal? And if so, should I leave them in the package? ;o)

But I'm pretty good at putting away hand-out meals!! Maybe you can put in an extra serving in the pot ... & I'll swing by to eat? Snicker!!

Stay strong ... & positive ... I love your Blog & hearing how you are doing. And I'm amazed at how you have touched so many people ... & of course, really enjoy seeing names & comments from people I know whom you have influenced.