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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Tuesday, April 26, 2011

The Best Things in Life Are Free

When I started seeing blood when I peed a week ago Thursday I freaked out on many different levels. Obviously, I was concerned for my health, where the bleed was coming from and why it was happening and what would happen if it continued on, but I was also extremely emotional disturbed.

Who wants to have blood coming out of those personal parts for no rhyme or reason? Not me. It's incredibly unnerving.

What do you do when you've been sick for FOREVER and you have a scary symptom that could threaten you? You advocate for your health. You get an idea in your head of what you want and then you call whoever you can to get what you need.

Well, that process took over a week. I kept getting the same response, "Don't worry about it unless it clots or you have trouble urinating, then go to the ER."

No, that answer didn't uell my fears. I don't want to wait until I have an emergency if I don't have to. I've had my ability to urinate blocked by clots before in Dec. 2006, and it was very scary. I don't want a repeat.

Finally, on Friday and with the amount of blood increasing, I was given the name of the urologist who placed my stent, a man I had never met since I was sedated, and promised an urgent appointment this week.

I relaxed a little.

But Sat. came, I was exhausted, the bleeding was increasing, I hurt like hell, and whatever security I felt from the day before had left me. I decided to call the urologist on call to get his opinion on the issue.

Not once during the entire week had I talked to or even had the offer or option of speaking to a Doctor. Nurse Practitioner or nurse that specialized in urology or knew about stents. It was long past time to talk to someone in he know.

Sat. morning I finally called and asked for the urologist on call.

I spoke with a very nice, well informed Dr. Deiter, who I have no idea if he is a resident, fellow, or attending, but it doesn't matter, because he was the perfect man for me.

When I said my name and began to introduce my health history he stated he was, "very familiar with my case," which immediately creeped me out.

I was told Fri. I do have a urologist, one that likely came into the procedure room while I was unaware and snuck before I came to. Maybe this Doc was with him.

Who knows? But it was also reassuring he knew me.

I told him my complaints and he quickly began reassuring me. He made statements like, "bleeding with a stent is completely normal" and "stents are commonly painful. They are not a comfortable addition."

He also stated that, "Blood in a toilet is like food coloring in water, it looks a lot worse than it may be."

And finally, what no one had told me, but what needed to be said that I so desperately needed to hear:
"There is nothing that can be done for minor bleeding with a stent besides stopping your lovenox."

Stopping my lovenox, my blood thinner, is not an option due to the possibility I'll create clots going to my lungs or brain causing pulmonary embolisms or a stroke.

"All we can do is watch the symptoms and gauge whether you need a transfusion for blood loss."

That's it! That could have been said to me on Monday, or maybe, even a week and a half before when the problem started!

All I needed was a little reassurance that the blood, coming from a very personal area I like to take care of, and the increased pain was normal and expected.

I needed reassurance! I needed five minutes of someone's time to tell me the truth and what to look out for. I've been in many situations before where there is nothing that can be done other than watch for symptoms and be transfused if necessary.

That's not scary. The unknown is scary, and that's where I was left. Now I am informed, relaxed, and that reassurance was free.

Thank you Dr. Deiter, but elsewhere, about freakin' time.

This did get me thinking about all the free things in life we should be grateful for. Here is a personal list:

Family hugs.   Chasing butterflies.      Catching fireflies.      Having a baby smile at you.                        The sound of laughter.            Laughing yourself to tears.            Hearing "I love you."                    Feeling loved.                Having faith.                                     Knowing you've made someone happy. The smell of spring.          Lazy sundays.           Naps.                    Splashing in puddles.                   Child-like innocence and honesty.              True love.         Learning.                     Serving others. Working towards your purpose.            Knowing who you are.                 Strength of conviction. Knowing right from wrong.                   Forgetting preconceived notions.              Humility.                   Lacking judgements.         True friends.        FAMILY.         Traditions.      Exploring your surroundings. Curiosity.          Hearing from a past friend.                 Succeeding. 

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