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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Showing posts with label Chemotherapy Holiday. Show all posts
Showing posts with label Chemotherapy Holiday. Show all posts

Sunday, December 4, 2011

X's Christmas Wish Miracle


This is one of my favorite stories. Some of you loyal readers may have heard it in pieces before, but it 'tis the season to remember magic exists, wishes come true, and miracles are real.


The first time I heard the wish was in April, a full eight months before Christmas, when most children have forgotten that Santa is watching and are busy planning their April vacation.
Christmas two years ago when X made his lifesaving wish.

My Son, X, and I were sitting around on the floor, playing games, when X said seriously, "Mom, for Christmas, I am going to ask Santa to make you better."

"WHAT?!" I gasped, shocked.

“Where did this come from?!” I thought to myself, and worse, “How does my son know that he needs to ask for a miracle for me to be healthy?”

I thought we had done well hiding the fact my Hodgkin’s Lymphoma was “incurable,” and therefore, “terminal,” but as so many parents do, I had underestimated what my son understood.

"I don't want toys..." He continued, nonchalantly, looking down at the toy he was playing with, "I just want you better."

Then the tears started to well up, and my heart started to break. He was willing, at the tender age of six, to give up all the toys in the world to ask for me to be healthy.

I finally got myself together to talk to him.

"You know you don't have to wait for Christmas to ask." I told him.

"You don't?!" He yelled, looking up quickly with his big brown eyes staring, curiously, like I had the answer to the all the world’s problems.

"No, you don't have to wait,” I said, “because God is Santa's boss. He is around all the time. Santa is a helper for one night."

"So we can start writing letters NOW?!" X screamed delightfully, half asking and half demanding.

"Yes, we can write letters, and we can pray every night..." I said, trailing off, dreamily, thinking about the possibility of my own mortality, and how it was affecting my little man.

Xander cut right into my thoughts, ready to start his letter to Santa, asking for me to be healthy, and praying for me to get better.

After his April request, I constantly did the math to see if I could be healthy for Christmas.

In August, I started a round of chemotherapy that required infusions every Monday for two to three months with the guarantee that I would be sick and hospitalized during active treatment, but possibly putting me in remission for November and the holiday season.

Our 2011 Family Holiday Picture.
However, instead of getting better with treatment, I got worse. My lungs began to fail in August, and I underwent multiple biopsies and surgery to diagnose the problem. By the end of November, I was undiagnosed, oxygen dependent, relying only on a third of a lung to survive, and at 26 years old, instead of a miracle, I was thinking about stopping my medications and allowing nature to take its course.

But in the back of my mind I kept thinking about X’s Christmas wish. Angrily, I wondered how God could do this to a child that put all his faith in him and Santa Claus asking for one selfless thing for Christmas.

But X never got angry. He never gave up hope. Instead, he kept reminding me that I’d be better for Christmas.

On Dec. 5th I was finally diagnosed with Bronchiolitis Obliterans, a life threatening complication of bone marrow transplantation scarier than cancer itself.

On Dec. 22, sicker than I’d ever been, I was wheeled into my Doctor’s office. Seeing the state I was in, he recommended immediate hospitalization. Instead, I burst out crying thinking I could miss my last Christmas with my family and asked for prednisone.

Steroids are a double-edged sword in cancer care. Prednisone would alleviate the inflammation causing my lung failure, but it also would almost ensure my cancer would return.

The answer was easy. I opted for steroids.

The prednisone worked like a miracle. I could eat for the first time in months. I could play games with X. We were able to do all our Christmas traditions together, and X saw that with his determined faith his Christmas wish had come true.

It’s been two years now since X made his Christmas wish. He still remembers all the letters to Santa and prayers to God he said for me to get better, but if he ever starts to forget or lose faith, I’m still here to remind him that God and Santa grant miracles, especially for Christmas.



Thursday, July 7, 2011

Bone Marrow Soup & Ginseng: Al Sorts of Good Things

I stayed up last night. I pulled an all-nighter, my first one in years.
I wasn't being forced to read a ridiculously long book. I didn't have to write a paper due the next day. I wasn't partying into the wee hours of the morning (but I was celebrating with fireworks even).
It was so much better than that.
I FELT GOOD! I felt motivated and capable and I was way too excited to waste that feeling sleeping.
Where'd the change come from?
Maybe it's the chemo holiday helped by my slight increase in prednisone, but I've done those things before.
Maybe it's the remission, but that's happened in the past too.
I've been taking Dr. Wong's chinese tea which now contains ginseng to give me a little extra zing.
I also made my first bone marrow soup, which does, absolutely, increase my energy, using this recipe:
Ingredients:
2 or 3 lbs marrow bones- Cut to see the hallows within the bone containing the marrow, you can have the butcher saw them or do it yourself
 medium red pepper
1 medium onion
3 celery stalks
1 tsp dried rosemary
1/2 tsp dried thyme
6-10 black pepper corns
2 bay leaves
Garlic, lots
(I used fresh herbs. It's that thyme of year) 
Directions:
Cover bones in water
Crack the bones and then throw everything into a crockpot and slow cook overnight.
 (or low for 8 hours)
Cool the soup for a while. Then, strain the soup through a cheesecloth or strainer (you should only be left with the broth) and let it cool to room temperature before placing it in the refrigerator.  After it’s cooled, there will be some fat that is congealed on the top.  Skim this off and throw it away and then fill ice-cube trays with the soup until frozen.  You can store the cubes, two each, in zip lock bags.


This recipe still came out a little watery. IT needs more flavor to stomach it, maybe bouillon, but overall, tastes like chicken soup.
I used the broth for ramen noodles and threw the flavor packet in with the noodles, which made it taste fine, exactly like ramen.


Wish I could tell you more, but I'm off and running again. I'm still busy, but finally with lots of good things!