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, January 20, 2009

One for the books

It’s guilty admission time!
I know you all love it when I expose my dirty little health secrets.
They are so bad, and yet, so good.
Here is one for the books.
A couple weeks back I experienced a terrible migraine. This headache had been slowly creeping up on me and accumulating for months. It had started to affect my quality of living. I couldn’t do activities I enjoy in my daily life since the pain was so severe.
I could not move my eyes to the left. If I did I would suffer excruciating pain. I felt nauseas with these headaches. All the lights had to be shut off. I plunged myself into darkness.
I could only experience silence. Noise would potentiate the pain.
My senses seemed hyper acute, and even the feeling of the clothes on my skin caused the pain in my head to increase.
I just couldn’t get comfortable. Anything that came into contact with me was the enemy.
I started taking pain medication, such as oxycodone, to try and relieve the headache. It only got worse.
I can’t take any imitrex due to its reaction with my lexapro. The combination could give me “serotonin syndrome.” It’s bad. Not worth testing.
I was starting to get nauseas. I dry heaved a couple times. So when the narcotics didn’t work, I took a benzo, Ativan, that is used for anxiety and nausea.
I thought, maybe, I was just anxious and needed to calm down.
No dice. The ativan was not the cure all for my headache. It didn’t even kick my nausea’s ass. What a dud pill.
I couldn’t stand any noise. I couldn’t stand the vocal tones of women. They were too high pitched and listening to them felt like I was hearing nails dragged across a chalk board. I hid in my dark, silent room and refused to talk to anybody.
I refused until I realized I was NOT receiving information properly. The world just wasn’t looking right. Earlier in the day, when I was traveling with my father, I swore we were going south on the highway when we were going north. The lack of interpretation of sensory information had only gotten more difficult. My perception was off. I had taken so many medications to cure my problem I was concerned I may overdose and kill myself.
It was time to call the doctor. But which one?
I called Alyea, and he said I needed to be seen immediately. Call an ambulance! Get to an ER!
I said I wanted to go to the cancer clinic at Dartmouth. They knew me and always treated my emergency situations well. Alyea said just do it.
I called my old Doc at DHMC, Dr. G, and told him my problem. I asked if I could get into the clinic and be taken care of there. I told him to call my cell back if I could get the tests I needed.
I wasn’t really hearing at that point, and I was certainly confused. I wasn’t receiving any incoming information. If I was, it wasn’t making sense. It was overwhelmed with all the sensory information I was getting from the light and the sounds.
Obviously, since clothes hurt, I was not wearing any, and I could barely get myself dressed. Somehow I did.
I found my dad who came to pick me up to bring me to Dartmouth. I told him just to take me to the ER. I didn’t care. I couldn’t think. I needed to someplace safe.
When I finally got through the process and got into a room the nurse immediately made me put on one of those gigantic johnies that fits 350lb men.
However, clothes were uncomfortable in general. With johnies, I usually wrap them around myself since they are so big and create a wrap dress. I didn’t do this.
As a result, I kept getting tied up in the gigantic johnie. I couldn’t move. I’d try to shift to get comfortable only to get laid out by the mounds of fabric.
That johnie had to go. I took it off and covered myself with the sheets.
At this point, the resident comes in.
Now I forget that I am a grown woman. I am not any longer a little girl. I also forget that these residents are basically my age. You know what, I don’t care. They are doctors, they chose this profession, they’ll have to deal with me flashing my body around.
He introduces himself as Paul (changed to protect the innocent) and explains he is a resident and he is there to assess me.
“Fine, buddy” my irritated mean mind says, “let’s get this done so I can get fixed. I really hope he’s not an idiot.”
I have a tendency to think EVERYBODY is an idiot when I’m irritated, and if I’m really bad, I’ll find a way to prove it to everybody.
We were talking. I explained why I could not take many typical migraine medications due to my condition and possible interactions with other medications.
Then he had to assess me. Apparently, he was a little embarrassed by me lounging around topless even though I was covered in my sheet.
He decided to take MORE sheets and cover me to do his assessment. When he lifted his stethoscope to listen to my heart through 3 different blankets, I almost keeled over in laughter.
There was no way he could hear a damn thing through those sheets. He was just embarrassed and protecting my modesty. How cute.
But I couldn’t laugh, that might have made my head explode. He eventually left and my dad piped up, “What was his name? Pablo?”
Uh-oh. Dad hit one of my nerves with his cultural ineptitude.
“His name is PAUL!” I yelled at him. “PAUL, do you hear a B in it?
“He’s from Italy?” my dad asked, innocently.
“NNOOOO, he’s from MEXICO!” I howled, irritated, but amused.
“Say it with me, dad, PAUL! His name is PAUL, not PABLO. There is no B in it!”
Unbeknownst to me, Paul had walked in during my tirade. Due to the pain, I had been protecting myself from sensory information by hiding under the covers and didn’t see him.
“It’s okay. It’s okay. Not a big deal.” Paul said. Dad and I both stopped talking.
“Whatever you say, Papi.” Escaped out of my mouth and I closed my eyes to sleep again.
I did end up getting some sort of pictures taken of my head to confirm I did not have a tumor. I later saw a neurologist to confirm that the structure of my brain is fine.
The ER gave me 50mg of Benadryl to knock me out sufficiently. I was able to sleep until I saw my people at Dana Farber the following day. It gave me time to process and cultivate a plan with my health care team.
I saw Dr. Meehan, along with NP Beth, and fellow, Josh Rifkin, who had taken care of me years previously, to establish a formal relationship with providers at DHMC. This way, I know exactly who to call and where to go if a problem like this occurs again.
Within the week, I saw a neurologist who gave me several natural treatment options and ordered an MRI/MRA.
The MRI/MRA tests were clean. His suggestions for care of my migraine were excellent and have been EFFECTIVE.
I now take feverfew 380 mg twice daily and I take 25 mg Benadryl in the evenings as prophylaxis. HOORAY, it’s been working.
I got past that, only scarred with an interesting story to tell.

1 comment:

DebA said...

How Brave to tell the story. It is amazing that you put it all out there! I cannot imagine what it is like to be you. I had some bad experiences medically in my late twenties and early thirties that caused me to loose faith in the medical field. I still struggle with quick diagnosis and HATE to hear people quote the odds (they did not work in my favor or my daughter's). I had some not so glorious moments then. But here I am, living a healthy relatively normal 50 year old life. I am lucky!
I cannot even imagine being in your shoes. I read your blog, marvel at your honesty and your tenacity. I am impressed with the very real pieces of you that you openly share. What a gift. My grandmother was a poet and so many times I have enjoyed knowing her from her words. Your words are forever and Real! What a cool thing that is. Bravo for You!