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, June 17, 2009

Cheers: To Living Life to The Fullest

I think the emotion I felt when I got the card in the mail from Charlestown Primary School yesterday was relief.
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It’s been a while since I felt that emotion.
Tell me if this is correct, but it felt like a burden had been lifted off my back.
I wanted to jump from roof tops and say “Hooray, I can buy those grape leaves at the super market! I don’t have to worry so much anymore!”
For those of you who don’t know, grape leaves are a Greek, or just Middle Eastern, favorite. They are also a favorite of mine since a friend taught me how to make them in college. They are grape leaves wrapped around rice with spices.
Very good for you and tasty too.
My first urge was to drop my budget warrior ways, throw out the meticulously organized coupon book and the Sunday grocery store sale fliers I pen threw every weekend to compile my shopping list to maximize each and every savings possible and shop like a crazy woman.
But then, of course, reality set in.
I shopped.
I headed right to Rite Aid and got my prescriptions filled.
Actually, I got one prescription filled since one wasn’t available in its entirety. Thank goodness I am organized and have had this happen one too many times. I can handle waiting until NEXT WEDSNESDAY to receive it.
Then I started to wonder, “Does this mean my parents aren’t going to pay for me and the kids when we run off to DC this weekend?”
Yes, folks, you read me right, I am going to DC.
My father asked me yesterday if I wanted to go to Washington for the weekend since mom will be there for a conference.
I love mooching off mom and staying at her swanky hotels.
Since we (Xander and I) are feeling good, we really have nothing better to do. A family road trip with Dad, Alexis, Xander and I to meet mom in DC on Thursday night sounds just like what the doctor ordered.
We hope to get to DC about 10 or 11 to the HYATT REGENCY where my mother is staying.
Hello, Hyatt.
Do I feel big time or what?
Actually, it’s “or what” since my mom is there working with the North East Regional Board of Dental Examiners and that is how I am allowed in the doors to experience such luxury.It really doesn’t matter to me how I got in, but let’s be honest, I do hope mom and dad are so excited for our company they want to make sure our quick family vacation is comfortable.
If I am sounding spoiled, I’ll admit, I am.
I feel a sense of relief, but not that relieved. I have a cancer cloud hanging over my head that is threatening to rain treatments from a whole different continent.
Feeling financially secure, or secure at all, is not really in the crystal ball.
I am very blessed to be well taken care of by my two parents, and now Alexis and Xander get to have the same experiences I had as a child.
The first time I traveled to DC with my mom on business was when I was 6 years old.
Xander has been tagging along with me on her trips since he was two. Alexis started last year.
I don’t see the trend stopping anytime soon. At least I hope it doesn’t.
I remember one of the first times I went to Washington when I was 6 or 7, and after 10 hours in the car, when we got to the hotel lobby, my parents let me go to the bathroom all by myself.
I felt so big time. I was such a big girl.
Unfortunately, that was the time automatic flush toilets were being introduced, and of course, they had this luxury at The L’Enfant Plaza.
They did not have this luxury in NH or anywhere else I had ever seen.
I was so small I would trip the sensor that said I existed then I would move and it said I had left or just didn’t exist anymore.
The toilet kept flushing on me.
I thought I was going to be sucked up and attacked by this monster toilet.
I did have a fear of toilets when I was younger to start with, and this crazy toilet whooshing loudly and splashing water everywhere wasn’t helping.
I don’t remember if I was ever able to do what I went there to do, but I do remember running really quickly back to the lobby and then pretending everything was okay.
All attempts at pretending to be a mini-adult that vacation failed miserably, Later in the weekend, we went to one of our favorite restaurants, Paper Moon, in Georgetown (I don’t know if this still exists, but it was good). I tried the escargot.
I really liked escargot, except it didn’t like me back.I ended up putting that escargot in those funky flushing toilets later that night.
I still, to this day, have never again eaten snails.
I am excited. A burden has been lifted, and even better, it was a burden I had so long I had forgotten I was living with it. I can focus on the adventures at hand I have planned.
I have many, many adventures planned for the summer.
I am grabbing good friends and family and traveling. I’m bringing back the family road trip.
Something powerful is in the atmosphere, in the environment, in the general milieu of these times in America. I think it is the feeling of history happening.
I say, I-95 is the Rte 66 of our times. For all those missing the analogy, Rte 66 was a much traveled route of road that went from one coast to the next. People like Jack Kerouc chronicled their trips lamenting on periods of self discovery as the adventured through a new environment.
I am adventuring through new things everyday, and I barely have to leave my home, but now I need out.
I have felt the time is right, history is calling, and someone needs to chronicle the events from their perspective for a while now, and soon I set of to do it.
The East coast is where it’s at.
A week from Thursday, Xander and I will be joining Bynn, Jake, and Bailey to head for Montgomery, Alabama to stay with Brynn’s mom, Colleen.
I don’t think you can do an all-american millennial road trip better than in a forest green jeep Cherokee with a golden retriever in the hatch and the luggage on the roof.
I have never been to the south. I think it’s time I got my southern belle on.
Colleen and I have been jabbering online making plans and Bryn told me of more of the events.
I’m really excited to have new experiences and see things I have never seen even though I am doing all this specifically because I know I may never get the opportunity again.
This is what living life to its fullest is, people.
However, I want you all to understand that these travel trips are budget friendly.
Due to my restrictions, I pack food, cutting a major cost from the budget.
I’m actually thankful I was forced into this habit by the transplant. Not only is it more cost-effective and budget friendly, but it is just better for you.
I also don’t want to run the risk of getting that McTummy again.
If you don’t remember, a McDonald’s binge landed me in the hospital with gastroenteritis (Nausea, vomiting, chills, etc.)
A second attempt at McDonald’s produced a similar result.
I keep telling myself it’s just a virus, but I’ll keep to packing.
My new found favorite foods for keeping myself healthy, wealthy, and wise while I am on the move: dehydrated fruit, trail mixes, granola/protein bars, and smoothies.
I must have food with me at all times. The aforementioned foods are what I carry daily, in my large, overworked purse.
When I need to eat, I need to eat. This is partially the steroids talking, but it is also partially me. When I need food I need it NOW or there is a risk of hypoglycemic meltdown with crankiness and sweating.
I also throw in a drink. Usually one which I have made at home in bulk.
When did people stop doing this and buying cans and bottles all the time?
I finally rounded up some travel bottles. Before I was too cheap to buy them and to scared of the BPAs in plastic irritating my cancer to drink out of those so I had a couple trusty mason jars.
Yes, mason jars. You do what you have to do in hard times, okay?
Luckily, I found some dishwasher safe, stainless steel travel mugs on clearance and my brother was given travel bottles for a college event he participated in.
I think he was just sick of me looking ridiculous, chugging drinks out of jars.
I find myself looking around the world A LOT recently and wonder, “When did this happen?”
For example, I read an article a few months back about how hang drying wash was making a comeback.
“A comeback,” I thought. “Did it ever leave?”
But that’s the country girl in me. I think having clothes that smell like fresh air is a luxury. I also enjoy hanging them. It’s therapeutic, and now that I have energy, I can.
I know I am sounding like some creepy, Betty Crocker housewife type right now, but I am really liking hiding in my house and having the energy to do these very basic practices that the world seems to have lost somewhere along the way.
I learned to make ice cream the other day.
My cousin taught me while the kids were playing.
There is no need to buy a big expensive fancy machine, just get two metal coffee canisters that can fit within each other with enough space to put rock salt in the middle.
Rock salt, as in what we throw on our sidewalks in the winter.
Get some cream or whole milk, add your flavoring, add your fruit, put it in one can.
Take your other can, put the rocksalt in the bottom. Place the can with the goods sealed in this other can and add rock salt around the container. Seal and shake it to make it.
Whala, ice cream. Quick, easy, done deal.
I think I am loving these types of activities because I have always had a “hippie streak” in me.
I was also raised with a family who practiced sustainable farming and did hold to the tenants of “waste not, want not.”
It’s easy for me to be this woman holed up in her home using organic cleaning products, cooking nutritious foods, and maintaining a garden with homemade compost.
It’s easy for me when I am healthy. The trick is how will I do these practices and presesrve them, making what I eat and grow into meals for the future, when I can’t do these practices.
This is the trick. There are lot of good things in theory but would never happen clinically. This lifestyle needs to be convenient to encourage people to participate.
I am lucky. I am motivated.
I do all gardening, healthy cooking, sun drying, organic cleaning, etc. like my life depends on it.
My life may depend on it.
If my environment contributed to my disease I think my cure is in my environment.
Wouldn’t it be amazing to get my scan at the end of July and hear, “You have no cancer. It spontaneously regressed. It must have been just inflammation.”
I’m willing to do and try everything that could save me.
I am not at home having a free for all like Martha Stweart on house arrest. My disease is absolutely a full time job. It is a draining, thankless full time job that exists 24/7.
I want to gain all the knowledge I possibly can from this invader, this mutation of my perfectly well performing body that has made me so sick.
I want people to know that I tried absolutely everything available for treatment because I loved and wanted to stay with them, and if that fails, I want them to know I did my best to stay by their side so I could watch them grow and participate in their lives.
I won’t have my family looking back with regrets and wondering if there was more that could be done in the context of my disease.
There isn’t, I am, everybody is, doing all they can, and just knowing this, just realizing that so many people are rallying behind me and uniting together trying to find ways to relieve my pain and help me gain strength is one of the best life lessons.
And now, on to living life!

1 comment:

Anonymous said...

I am so excited about your road trip. Traveling in this great country of ours is awesome. I did a coast to coast trip last summer...spent 12 days traveling along that Route 66 you mentioned. It was awesome.

Just one word of caution. It is hot as blue blazes done here, sugah. Please bring some nice cotton shorts and tee-shirts or tube tops, and flip-flops. That will probably be all you can stand wearing. We are supposed to get into triple digits tomorrow.

Bon Voyage!