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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Monday, October 5, 2009

The Good, The Bad, & The Downright Sad


I have good news and bad news.
Hmmmm, good news vs. bad news.
I’ll be starting with the bad news.
I don’t know if I’ll be getting to the good news today.
I’ve been put in a funk through reading that Adrienne, an alpha hodger who fought for 11 years has succumbed to her disease.
I’m glad she has finally found peace. Her site is Adrienne’s Updates and can be found at http://adrienne95070.blogspot.com/
I am so impressed by her families’ ability to remain honest and transparent through their daughters battle. She did not die in vain. The information regarding her disease, coping, strategies, and fight will live forever helping others.
I am in the hospital.
I have been in the hospital since Saturday evening.
I had been experiencing severe right sided pain last week. It started around my liver on Tuesday and was UNRELENTING.
I broke out the bottles at my home pharmacy and medicated away.
I also saw my dear favorite chiropractor/osteopath/accupressurist on Weds.
On Thursday when I experienced no relief, I called to get my liver enzymes checked.
I couldn’t tell whether I was having some serious liver failure due to the combination of chemo and medications I have been taken or what.
I wasn’t jaundiced and I didn’t have any gray/clay colored stools that are hallmarks of liver problems. I also wasn’t bruising excessively or bleeding.
I never did receive a phone call regarding the testing results.
It was the “no news is good news treatment.” However, if I am forcing my pain riddled, weakened, gasping for breath body out of bed, I’d like to know numbers.
Just because there is not anything the doctor can do does not mean there is nothing that can be done.
Someday, somehow, these tests results will be available to the patients electronically without the doctor if they are within acceptable limits.
Friday I resorted to amphetamines and extreme medication taking to have fun with Xander, and we did have fun.
We learned how to play Bakugan, and then played monopoly, and then played basketball “HORSE” style with spelling words before snuggling on the couch to watch “Wizard’s of Waverly Place” during quiet time.”
I was doing so well we went out to pizza with another couple! I was actually having something like a “normal” life.
My pain had finally been controlled and moved slightly upwards to my chest area.
Yes, my chest area. That made me a little nervous.
Unfortunately the good times didn’t last long, when I woke up on Saturday my chest hurt!
It hurt exactly where my pneumonia had been seen on the CT scan earlier in September. Gurrr. The CT here from Sept. shows the fluffy, untappable, infiltrate.
I rolled over fo my 60mg of morphine before getting out of bed.
It didn’t help, but I still managed to drag myself to X’s soccer game where he had FIVE GOALS and an ASSIST!
Seriously, if it were legal, I might consider allowing people to recruit him now. He is a phenom. He has moves. He works his body like his momma.
After the game, I took 30 more mg of morphine before our sister-in-law called asking if we’d like to have Lexi.
We have missed Lexi.
It’s been hard to not see her as often due to my disease. She is beautiful as always and will be turning ten soon.
Despite the pain and the nagging knowledge in the back of my head that I would have to be hospitalized (because by this time the pain had not improved at all and was affecting my ability to breathe) we invited Lex over and made plans to see “Fame.”
Yes, I couldn’t breathe but instead of going to the hospital I took a nap and went with the fam (+Brynn) to see fam, which Alexis LOVED.
I knew she would. The sound track is fabulous and it shows the possibility of becoming widely famous with hardwork alongside the reality of just not being good enough for fame.
By he end of the movie I was gasping for death and grabbing my chest, a sure sign it was time to get myself to the hospital.
As usual, the staff at Dartmouth was fabulous, but no matter how wonderful they are, the simple everyday process of admittance gave me some fabulous material for my pro-reform commercial. Despite being unable to breath, I spoke with two people confirming that I possessed insurance and would be responsible for payment.
During this same time period, I spoke with the doctor once.
That is 2 for big pharm: one for basic treatment of shortness of breath.
This didn’t stop the gung ho nurses from powering through the admitting clerks to get me what I needed, but it certainly puts things into perspecti ve.
What would have happened if I didn’t sign? Would the insurance police come get me? I’m pretty sure the correct term for insurance police is “creditors.” Big pharma are like the top thugs and creditors are the street workers who do their dirty work, making calls at all hours, threatening to take your house, car, or first born completely not caring about the fact that you are being treated for cancer and your lungs are trying to fail.
It was found I had an abscess in the upper lobe of my right lung which is probably just an extension of my previous infection.
Never would have found that out though had any of those fabulous nurses allowed the money grubbers to stop the process.
I’m now admitted to my part-time home, one west. I'll be having a thoracentesis today to biopsy the infiltrate that's been causing me so many problems in my right lung.
It's more dense than in the past so we're hoping to get a sample. It's a 50/50 chance whether or not it will give us any information to giude treatment, but I am in it to win it.
I always did want a second home for vacationing. Unfortunately this wasn’t quite what I had in mind.
At $1303 a night I certainly could afford to be somesunny, gorgeous, and luxurious with a beach and cabana boy.
I guess New England with Dr. M will have to do.

2 comments:

Valerie said...

Hil, I love your 'TUDE! xoxoxox
V

Bekah said...

Hey Hill... I'm sure you're aware that this is such a blow to the Hodgkin's community. And Adrienne herself was an amazing, AMAZING young woman. I'm not ready yet to take in the fact that she's no longer here..

But wanted to make a point that, she actually battled cancer for 13 years... she was such a warrior. And, I cared for her deeply.

Also: Adrienne had effusions that you speak of having around her lungs too. PLEASE, go see Dr. O soon.

He has so many things to offer.
E-mail me if you ever want that info. He sees cases like you and me, every day..

<3 B