Posted by: cancervisa | March 3, 2009

Too close to it all-death

I Thought it was going to be a special day because I was going to get epo=eprex. The appointment was set between 9-noon. No sleeping in today, but  that was not what made it special.

My love of My life’s Mother has passed away. Not suddenly either, with great amounts of pain and suffering.  Some say it is a blessing, but I am not sure.

You see, I have been on the same morphine pills that were being administered to my mother in law.  I was determined to kick the habit of morphine and figure out alternatives of pain management.

But when you are 83 you give up a lot quicker, in my humble opinion.

I myself have been in and out of painful situations of the course of my cancer.  I don’t point fingers or set blame if someone says “enough is enough, end it now. I always think it is customized to each individual and each circumstance.

I talked to lovebug who is about to turn 4 this month, and she said it is normal to be dead. I prodded a bit to close to it all, and I swallowed hard and asked if I was dead would you be sad?

She replied yes, and she said she would dig me up. I reeled and said you can’t do that. Then she said that her Papa would throw her really high in the air so that I could see both grandfathers, grandmother and eventually me.

I was needed professional help at that moment, but wouldn’t you know the shrink never picks up the phone when you need it most.

I just tried to explain that once your heart stops beating the you are dead. So she laid  her tiny head on my heart and told me I was still okay for now.

I had to giggle at the her but the death of my mother in law is making me think too much about my own death–I’m just too close to it all– this thing we call death

Posted by: cancervisa | February 1, 2009

military structure of the hosptial

Few minutes before 9am and like all hospitals I FEEL like I have been put into military
service. The structure is probably good, but very hard for me to get adjusted to. The last few weeks
I have been taking a nap in the morning so that I am fresh for my liitle girl at 12 noon. But this is
not the case any more, she is on her own schedule today. Her gym class awaits her and a bit
of fun after class at the bakery is become part of her standard routine. I on the other hand
have to get use to my own routine.
Jingling coffee cups on a tray go past my new butler/cook and house kept room. Sounds of
machines beeping when done with blood pressure controls. Even the idol chat of others in the
hall.
My shower awaits me, and further is unknown. Will I get the MRI that was promised? The nurse
says it is faxed. Faxed? is that method a bit out of date? Why is that computer not integrated?
Makes me a bit un easy.

Posted by: cancervisa | January 31, 2009

what happens when the painkillers stop working?

It is one story when the hormone therapy stops working, there are alternative hormone therap
-ies, But when the morphine pills stop working where do you go from there? Morphine shots?
Call up the Euthanasia folks and tell them to stop by and discuss the option of death vs pain

I’M not sure how much more pain I can handle. My home remedies of putting ice on the pain
is not working. I am at a lose. I wonder how any older cancer patient handles this, I think
I would easily give up after the age of 75. Full life enzo,but my problem is that I want
to live and not give up, but this leg of mine is asking for a home grown operation to
amputation.   I truly am focused on getting away from the pain, but my cute cold patches
and  different lying down positions that have worked in the past don’t seem to have
any affect on the pain. Now I just have a dopey head and wobbly knees due to the additional
pain stillers that I have been granted.

Luckily my specialist is on call tonight, but do I just want to pull an all night-er with
the pain or call her up for more concentrations of Morphine? I know most would say stop
being so proud and take the drugs, but my heart is not into taking addictive drugs at that
higher level.

Posted by: cancervisa | January 30, 2009

Forgot about the…

Forgot about the chauffeur.

I was just recently day dreaming of having a butler, a cook and a maid. Because things were
starting to get overwhelming with the pain I have endured for over a week now.
Finally thinking I am out of the water, the pain really has not subsided since I have been
admitted to the hospital and gotten my zap of radiation. I thought the zap of radiation
was going to instantly stop the pain. But of course this is not magic like so many of the
lovely fairly tales I read to my sweet little 3 year old. Correction, almost four is what she
says to me almost daily.

So as I STILL lay trying not to move and find a comfortable spot, I finally give up thinking,
I am in the hospital, I can take a higher dosage of something, slip me a Mikey, put some
wonderful drop in a drink. There are nurses on call, I have the big red button if something
is going to happen. Bring on the heavy weight drugs!

No sir Ree bub, just plain over the counter aspirin. I don’t show my disappointment, I am glad
to take something, anything to sleep through the night. I get told that tomorrow I get a different
bed, which is nice, but I might just stay up all night typing dribble to divert my attention to
the pain.
” Just get me a sharp knife and I will cut the leg off myself”! I have carved enough turkeys
to know how. It was an idol threat, but really wanting to pain relief was beginning to be
my maniacal focus.

Two aspirins to the rescue, or should I only take one to top off the pain and stash the other for
late in the night when I surely will wake again. naa, bottoms up maatie. I never realized
how greatful I am that I learned to chug beer in college, I can get down even the nastiest
tasting pill in one fallen gulp, and hideous bowel movement drinks are no match for me.

So if your think about it, I have my cook, my meal was delivered to my bed, what service,
I have my butler, the wonderful staff of nurses, and I believe the cleaning lady will com every
day compared to the one I have at home that is once a week. Did I get my daydream? Yes, God
has a funny way of entertaining my thoughts.

Posted by: cancervisa | January 30, 2009

What am I doing here?

Because my lip is numb I have spent 10 hours doing nothing and only 2 hours actually getting
scans. The nice thing about being in the hospital is the lovely visits from family and
friends.
A wonderful painting friend came by to talk and get me excited about another topic other
than my sickness. The diversion was delightful.a topic dear to my heart is Mayor-ships.

Daddy is putting his hat in the ring for the Mayor-ship of Bloemendaal. The husband of my
painting friend is rallying support in his party to support a nomination. He is truly
qualified for the position and is very clear about the fusions of districts. We have a
word in English, gerrymandering. Combining small hamlets together to make a bigger voting
district as well as better services to the citizens. Daddy is quite good at this particular
tasks,. Gerrymandering also helps constrain votes in the favor of the leading party.
Bringing 3 districts of Amsterdam into one is no easy task. Bloemendaal only has 2 districts
to put together, a cake walk for my hubby. Let’s hope the decision makers think my
love-of-my-life is the best choice and hire him.
Not because I would be close to my painting buddy, or that Lovebug has already established
friends in Bloemendaal, or that we get with the deal a house, but because my Man is the
best man for the job and everyone will recognize it.

what shall it mean to me? stability for us for 6 solid years, and a guarantee of another 6
years of 80% salary. 16 years in total to ride out any financial crisis that is pending.
My baby will go to the best school and receive a teacher to student ratio that is way
better than in Amsterdam. She will have a small town address just like her parents. with
safety and social controls of others in place. I and my family already have a social
network there already in place. Come on over for tea, the door is always open.
I will still be close enough to my hospital and will not have to change medical
facilities. I CAN have easy access the beach as well as the small boutiques that the little
town is known for. but my meaning is to enjoy my family as much as possible, as often as
possible, playing in the park, taking bike rides to the beach, and enjoy the company
of the ones I love. Nothing else is as important to me. Just remain functioning enough to

 do other things than lay in a hospital bed.

Posted by: cancervisa | January 25, 2009

My new blog spot

http://www.trusera.com/health/users/whoknows

Posted by: cancervisa | January 21, 2009

cancer couple

When Kelley’s duo The Boxhounds were nominated for best polka album in December, the 40-year-old musician was in the hospital recovering from colon cancer surgery — a trying end to a trying six months in which both he and his wife, cable TV’s Great American Country personality Nan Kelley, were diagnosed and treated for cancer.

“It’s been such a hard year,” he said recently. “Nan had kind of finished her thing and then we went straight into this. I didn’t have a chance to breathe. I didn’t have a chance to feel anything.”

Today, their cancer is in remission and they are working again. As they spoke in the living room of their Nashville home, they joked about their ordeal the way other couples might joke about a bad vacation.

“When we go to the oncologist, he says ‘Which one are we seeing today — you or you,” laughed Nan, who’d just appeared on air for the first time since her treatment without a wig covering her short dark hair.

Nan, 43, was the first to learn she had the disease after finding a knot in her neck last spring.

“I had no other problems,” she says. “I was certain it was a goiter (enlarged thyroid).”

But it turned out to be Hodgkins lymphoma, a cancer of the lymphatic system that is very treatable if caught early, as hers was.

“They said ‘We know how to beat this one. The chemotherapy has been in place since the ’70s. We know how to beat it. You just have to get through it,’” she said.

She stayed on the air as long as she could during her treatment and told GAC viewers what was happening to her: “I shared it with the audience because I thought it could help other people going through it, but I ended up getting the most out of it. I can’t count the e-mails and cards that came for me.”

She returned to work full-time in September, but while her journey was ending her husband’s was beginning.

Doctors found three polyps in Charlie’s colon during a precautionary colonoscopy in November. One was malignant with highly active cancer cells and had to come out.

“I was stunned because we had just been through this,” Charlie recalled. “You’re stunned and upset, but also numb.”

Nan was at work when she got word: “I’m standing there in a wig, still a mess from my ordeal … It just didn’t seem real.”

The surgery was Dec. 1 — two days before the Grammy nominations were announced.

The Boxhounds are nominated for “Speechless,” an album that bumps the boundaries of polka music. For one, it’s all instrumental. It also incorporates nontraditional instruments like electric guitar and features a woman, Charlie’s duo partner LynnMarie Rink, in a male-dominated genre.

Rink, who plays accordion to Charlie’s guitar, was with him when he got word of the nomination.

“I shook him — ‘Charlie, we got it, we got it.’ Nothing. He was out. I said ‘What do I do now?’ I waited 30 seconds and tried again and he woke up. I said ‘We got it,’ and he said ‘Got what?’

“He was very happy and had a huge smile on his face. I had brought in a hat with a Grammy on it. We took a photo and celebrated a little bit, then he went back to bed.”

The news couldn’t come at a better time.

“To be in the hospital and coming out of that and to know you’re one of the top five in your genre, what a shot in the arm,” Rink said. “Sometimes you go through a lull after a life-changing thing. This kind of forced him to push and keep that positive outlook.”

But after he left the hospital, everything hit Charlie at once. He was emotional about the cancer and the nomination. He felt like he’d been given a second chance.

He needed to do something, he thought, and began organizing a project to raise money for the Colon Cancer Alliance and the National Academy of Recording Arts & Sciences’ fund for needy musicians. He’s working now to get other recording artists involved and hopes to have the first fundraiser this spring in Nashville.

“People probably think of colon cancer as an older person’s cancer, but it can happen to anybody. I thought maybe if they see somebody young speaking out, maybe they’ll listen. I can’t tell you how important it is to me to do this and make it as big as I can make it,” he said.

As for the Feb. 8 Grammy Awards in Los Angeles, Charlie plans to be in the audience — this time wide awake.

___

On the Net:

http://www.theboxhounds.com

http://www.ccalliance.org/

http://www.grammy.com/

Posted by: cancervisa | January 18, 2009

New Cancer patients reach my doorstep

I got an innocent note that my high school principle has cancer is in a special home in my home town. I missed the message before I had been back to the states and would have truly loved to visit him on his journey.  But in that same week I got a e-mail subject line “out of touch” that made me think how out of touch and recluse I had become. It was my sweet nanny that I chatted about who is on my mind. This is the first time that I heard her Grandmother of 75 is getting a double mas.  She must be from good Midwestern stock for a doctor to allow such a surgery at her age. All power to ya Grams.

The irony is that I have rarely been with out words of what I must say to a cancer patient. I still think there should be some portion of a social etiquette book that explain what to say and not to say, especially to the elders of a community which is so influential in your character and who you have become.

Just food for thought as news of respected people in your life turn up with cancer.

Posted by: cancervisa | January 15, 2009

Did I need to ask my doctor-damn straight

I carefully listened to very bad news that my blood is skyrocketing again. It is a very dangerous range. How disappointing, but did’nt think it was “life threatening” I just have a bit of jet lag, that’s all. No it was much more serious, I was experiencing high levels of pain and varying temperatures.  I don’t pick up my walking stick until there is no other choice.

So as I shuffle around the hospital cringing on every step with my right leg giving me no support. I ask the doctor, can I still attend the conference at the end of the month of Feb. It seems so far off yet.  She retorts,  I hope you bought refundable tickets or travel insurance. The second was true, and my head just sunk into my chest even with an exoskeleton brace, she could clearly see my disappointment.

My hubby chimmed in, I would not be surprise if she got to Texas by hook or by crook. They both had a good giggle because they know that when I get my mind set on something I rarely let go. But the frustrating thing is not that I am missing an amazing conference, but my future is filled with another battery of scans and likely radiation. I have not had radiation in over 2 years, and it took me months to crawl out of that pit. Tired day and night feeling like you fell asleep on the beach and don’t know what day it is.

I have noticed a benefit to my pain, as sick and demented as that sounds. My day goes much slower, I am constantly monitoring the clock to know when I can possible take the next set of pain killers. Oddly enough I get to enjoy more simple moments with my loving daughter who told me she would take very good care of me as she got out her doctors kit and put a blanket over me and tucked me in.  My heart just melted at that moment, but I did my utmost best not to cry. Because my future is very uncertain, I did not feel it was right to say that everything would be okay. Because frankly I can’t fake it. I am honest down to the bone. My honestly is another post, for another time.

Posted by: cancervisa | January 10, 2009

Changed my mind, or was it changed for me

I originally was going to refuse a conference because it would not even pay for the air ticket to TX. But since I was kindly rewarded what I asked for a second time around, I could hardly refuse knowing I just need to make hotel arrangements.

I am looking forward to my trip to Dallas TX and the Young Survivor Conference, I just have to find a room in a cheaper hotel within walking distance or find a room mate within the next 4 weeks.  I’m friendly enough, but extremely shy to get on a discussion board and ask to split room costs. But it is not the cost as much as how awful a room mate I can be, with bouts of insomnia, as well as 8 hour jet lag, I’m not sure how jolly I will be.  I might try to stay on Europe time and hit the sack at 6 pm which is after midnight my time.

So far I have accepted the scholarship money and started dinging my visa. Bring a whole new meaning to Cancer Visa. i have an official registration number and plane seats. Texas here I come.  ( ps. had a talk about going away for a weekend, and an acceptable permission from my 3 year old was granted).

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