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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Sunday, January 30, 2011

From Dad

The "Wilder" Side of the Family. Left to Right:
Vic (Dad), Aunt Barbara, Nancy (Mom), Jean Wilder (Grandma) & Dick Wilder (Grandpa)
Hi Too all

I have taken a long time in updating you about Hillary's Health. I have just been enjoying the last 2 months. She has been the getting stronger than she has been all year!! I am just amazed as how her determination has taken her to a level of health I didn't think we would see. Our Holidays were the best we could have imagined.  Within the last couple of weeks I have seen her mind get back to the old Hillary that we knew and loved. What an amazing journey. 

The last time I updated she had just started a service called Hospice - home care. We also took 10 weeks off from chemo. She is now back on a 2 weeks schedule. The doc's worked hard to change her meds and find the right combination. Hillary now has enough energy to get back to her creative ways. She has found a passion for making jewelry. She has been making it to all Xanders Basketball games. She is starting to write more stories and write in her blog more often. She was starting to lose her eye site and she got immediate relief from a new trial drug. It usually takes 8-10 weeks to see that specialist and she got in the next day!!  All of your thoughts and prayers have been heard!! I really think she is a miracle!

Next weekend is Charlestown Winter Carnival. She is having a lot of her NY college friends up for the weekend. She won't be playing Broom Hockey she does plan to go to the dance on Saturday Night. Her team won it last year.

I just want to thank all of her followers for your help in getting our family thru so very tough times. Without so many people pulling for us I would not have been able to stay so strong. I had my doubts last year to say the least. What great doctors and medical staff we have.
Hillary has been nominated for Monadnock region Woman of the year. She accomplished a lot for being so sick. 2 weeks ago she spoke about a part of the health care bill before the NH Senate. She was interviewed by the American Cancer society to be their Patient representative to go to Washington to Testify in front of the US Senate!. After her 3rd interview she was eliminated because of her feelings that Cancer Patience should be able to use Marijuana. I can tell you It makes a big difference in Her quality of Life. To see it help her with Nausea and be able to keep food down is a very good improvement  from the other drugs.

Thank you all Very Much

Vic Nancy, Patrick, Grace, Heather, Allen, Preston, Pierce, Jon, Xander and especially Hillary

Saturday, January 29, 2011

Never stop dancing


This is going to be a quick update because again, its the weekend, and again, I'm capable of having a life!!!

That life is again going to take me to my sister's in Natick for the day (because I love and miss the Wellington family so much) with my parents driving and Xander, super traveler extrodinaire, in tow.

I've handled my chemo relatively well. I've gotten fatigued. I've gotten grouchy, but over all I've been overcome with joy.

Yes, I said it, Joy!

It's been so long since I've felt this way in the absence of just nearly averting death.

I have no doubt how healthy I've felt for such a long period of time now is to thank. My head has cleared. Hobbies I've wanted to try I now have the energy to learn and love. I'm making cartoons to go with my postings! I've always loved political satire, but never had the energy to draw. Now it's as simple as clicking and dragging! I love it. I could do this all day.

USA TODAY1

I feel like a kid learning new things and loving them, wanting to do them all the time, allowing them to consume me.

And I can dance again.

I can trace the beginning of the worst back to the point I stopped dancing. Even shimmying to the music in my car had become to difficult, too tiresome, and would cause me to lose my breath. 

Jon and I have been able to make vacation plans for the future! We're tagging along with my mom on a conference to NYC in April.

We haven't experienced the joy of looking forward to the future with excitement and anticipation as a couple.

Can you imagine a marriage where the future is blank? A big black hole of scary possibilities? We didn't realize the strain it put on us.

The only downer is, Well, alongside that pesky repeal issue, I finally found a medication that absolutely alleviates my suffering, cesamet, and now it can't be ordered. 

No one knows why it's off the market, but just is. A manufacturing error maybe? Anyone who can help, please do.

Hopefully the kinks will be out and it will be in my hand before chemo a week from Monday so I can keep up with the hobbies and fun.

Friday, January 28, 2011

The Mighty Tigers That Can


The Claremont tigers were a wily bunch when they first stepped on the court. They were raw talent, rough around the edges, to say the least. 


The Tigers were a team made mostly of wiry 3rd graders that tripped over their own toes and had never touched a basketball. Josh, Caleb, and Brandon  worked hard to refine their skills, knowing there was a champion in all of them, because they all had the motivation, determination, and the heart of the tiger.


"We know we can do it," they thought, "We're the team that can."


The team leadership, two fourth graders, were comprised of a seasoned basketball veteran who had been playing with his older brother's since birth, Henry, and the lanky, fumbley Elijah, who quitely put all his effort into stealthily stealing, driving, and shooting. 


"We can do this. We can win." They said to themselves, "We are the team that can."


The team was rounded out by one 2nd grader, Alexander Ford, a secret weapon, whose future goal is to be an NBA all-star, but hadn't played a game in his life.


"We can be the best. I know we can." he said to himself. 


They were lead by Big Coach Jon, life-long player, experienced coach, and giant. 

"We have natural talent. We have hope, determination, and motivation. We can be the best." he thought.


The team started training at square one: how to dribble. 


Each player started pounding the basketball to the court, up down, up down, eyes glued before the ball hit an angle and flew across the court. 


Pretty soon there were basketballs flying everywhere and Tigers chasing after them.


Their first game was a flurry of chaos.  

There were fouls called for grabbing and reaching. Kids ran, football-style, with the basketball. The basketball got kicked down the court. Picks turned into football style tackles. Shots missed the backboard. Players tripped over their own feet. 

 
Game one the Mighty Tigers lost 21-14.


The Tigers were mad and frustrated. 


"The referee must not like us." some said. 


"It was all your fault," players accused, pointing fingers at each other.


"How could WE lose?" They growled. 


"TIGERS!" Coach Jon roared, "We need to stick together, like a pack. We need to be the best we can be. We can be the best."


The Tigers grumbled. They complained. They tried to make their loss someone else's fault. 

They blamed the Referee's. They blamed the other team. They blamed the color of their uniforms and their clumsy feet.


Then they lost again.


"TIGERS!" Coach Jon roared, "We all need to be the best we can be and work together as a team. If anybody can be the best, We are the team that can."

The Tigers looked at each other.

They shook their heads, "Yes, we'll be the best we can be. We'll play the best we can for the team."


At practice, slowly but surely, things started to change. The tigers began to dribble with ease, the ball staying at their fingertips.


Games were still lost, but only by 4 or 6 points.

Players still tripped and fumbled, but they could also slide with the ball, raise their arms, and defend the hoop like ferocious cubs protecting their den.


Floating passes turned to bounce passes.


Air balls turned into focused jump shots or lay-ups.


Half way through the season, the mighty tigers won their very first game!


There was celebrating, but the Mighty Tigers knew they could do better. They wanted to be the best. They knew they could.


The Final game of the town tournament started slow.


The Tigers were nervous. 


Every player had doubts running through their head, "What if I don't do well?" "What if they steal the ball?" "What if I miss the shot?" "Will we lose because of me?"


These thoughts chained the Tigers. Their feet dragged. They lobbed passes. Their shots hung harmlessly in the air.


With 3 minutes left the mighty tigers were down by 10 points, 28-18. 

The crowd was getting fidgety. People had started packing their things in anticipation of a blow out loss. 

Caleb and Josh started Checking the clock, wondering how they'd ever come back. 


"Time out!" Coach Big Jon hollered and the orange team shuffled in. 

"This is your time, tigers. We can win this game. Keep passing. Do help defense, and get in to take those shots. Let's rally!!!" Came the war cry. 

A new team came out on that court.


Henry came out and made a first lay-up and then a second jump shot.

The game was now 22-28.

Elijah stole the ball to regain possession.


With two minutes left, Josh drove to the hoop for another 2 points.

Then Henry stole the ball and with a pass to Elijah, the Tigers got another 2 points.

Henry stole the ball again for a break way lay-up.

With 20 seconds left, the tigers were winning!! They couldn't lose now!

Then, with 7 seconds left in the game, the rival team scored!! 

The score was now Tigers 29, rival team 30.


Coach Jon called a time-out. 

The Tigers had to focus. The team huddled into their pack and created a plan.


There was 4 seconds left in the game. 

The whistle blew and the Tigers passed the ball onto the court to Henry.


The gym went silent. You could hear a pin drop.


 Henry dribbled twice towards the hoop. He squared his shoulders. The ball was mid-air when the final buzzer rang and SWOOSH... 


The crowd erupted in cheers.


THE TIGERS WON THE GAME!!

The Tigers, the mighty team that could, won 31-30!  


"I knew you could!" Coach Jon said, as he high-fived the tigers and everybody celebrated,  "We are The Mighty Tigers that Can."

Henry's Buzzer Beater

video

Wednesday, January 26, 2011

Experimentation and Recuperation


I made a miscalculation in my medication management. 

Knowing I am going to live with cancer has changed my goals and ideals for treatment, and by living with cancer, I mean I am no longer searching for a cure. 

I have cancer. I'm hoping we can co-exist with as little side effects as possible. If a medication regimen sends me into remission, fabulous, I'll take a holiday.

My health will be reviewed via PET scan or CT every two cycles or 6-8 weeks, whatever we can get covered.

HERE IS SOME GOOD NEWS: A very vague indicator of cancer, the sedimentation rate or ESR, which measures the amount of inflammation in a person's body, has significantly decreased from my last treatment.

Two weeks ago when I restarted my velbam my ESR was high @ 50.

Yesterday it was normal at 15!

Something is working.

But I understand this concept is still difficult. It's new and relatively unheard of.

I know I will die from the side effects of harsh chemotherapies. I have come to close too many times through repiratory failure, septicemia, cardiac arrythmias. 

Living with my cancer is the best chance of survival.
 
I want cancer without disease. I want chemo that allows me to participate in after school activities, esp. Basketball, baseball, soccer games.

I don't want to be on the sidelines. I want to coach. My life is not a spectator sport,  but x still has a running count of how many games I've missed.  

I'm up to seven.

I missed a tournament game monday.
I missed Lexi's tournament game yesterday all because I made a medication miscalculation.

I'm running out of my cesament, my new miracle medication that allows me to function and participate in life the day after chemo!

It is amazing.

It is so new that no one has it.

My team keeps telling me I should "never have to ration my medications" or "suffer without my medications."

Well, I have been trying to get my hands on these pills for 3 weeks now. I still don't have them.

Rite Aid here can't get it. I've moved on to having my NP at Dartmouth deliver it to their pharmacy, who should then call me when it arrives, and I will drive the 45 minutes to get it.

Otherwise, it's flat on the couch for me.

I pity the patient that had to live without this.

Marijauna Arrests

Yesterday I made the miscalculation of taking a cesamet in the am, which gave me great energy, but wore off before the kids were out of school.

I had to take my ativan (the only other anti-vomiting medication I don't have a severe allergy to) to not throw up. 

That knocked me out until this morning. I missed Lexi's tournament game. I also missed my night time medications.

I felt like I was run over by a truck.

It's too sad. I also pity the cancer patient who didn't have this medication to cope. It's a Godsend. It's prescribed. It just happens to be marijauna based.

It hasn't caused me uncontrollable, possibly permanent, twitches (a la reglan, compazine, phenergan). It doesn't cause massive migraines (ala zofran and kytril).

Med Arrests


It doesn't do these things because it is natural. I'm holding my last one to make it to Xander's tournament game tonight.

Hopefully, I can get it again so I can enjoy life in the future too.

Cross those fingers and pray.

Tuesday, January 25, 2011

Open Market Health Care


I'm like a dog when I'm chemo sick. 


I try to eat to feel beter. 


Its rice then crackers then bread. 


Then I really end up sicker. 


Maybe it's the cesamet, which I love. 


I'm still flat on the coach, but I'm almost pain free and thinking. 

I could almost talk. I'm enjoying my own company. 



I'm also eating and drinking, which means, hopefully, no need for a run to the hospital clinic or a frantic call to my new palliative care nurse.


I'll tell you more about this new change in my care soon. 


Joining palliative care has been such a blessing to every person and business involved. It allows me to relax in my home while drastically cutting costs and time at the hospital while getting equal, if not better, care at home with out the risk of contracting some other awful bacteria from the hospital which would start this whole cycle again. I never knew how much I was doing that I could have had done for me.


Sorry for the tangent. 


Now, stop and think, please. When I was talking about my cesamet, how did you feel about the medication? Did it seem reasonable and prudent that I take it? Especially, when it would stimulate to eat and drink by controlling my chemo therapy side effect of nausea and vommitting?


Cesamet is the new to the market, and much more effective than, the only previously available, THC (marijauna) pill.


Now again, please stop and think if the Doctor handed you a script enscribed Mehylphindate (Methylphenidylacetate hydrochloride) or even (methyln) and say you needed it, would you take it?

Would you know were taking ritalin?

Because I didn't.

Would this be a problem? Ritalin has a stigma against it, but you need it.

In case this allusion is misunderstood, let me clarify: people put medications in their body, completely unknowing of what it is for or if it is safe, by trusting in the prescriber.


The curse of cesamet and marinol are in their name and the historical taboo it implies, conjuring up images of Refer Madness, the pre-quelto DARE, an educational video, Beware signs, and scoldings.



But marinol is what was available by prescription and all we had.


Marinol, which people would take, needing relief immeditaely, but would not kick in until 3 or 5 or 7 hours later.

 
Surprise!!! Imagine that happening in the middle of a PTO meeting. 


And, even better, this is the beauty of allowing the open market to drive down costs, cesamet may not have been created had some states legalized marijuana. 


CA, CL, and MA have legalized medicinal marijauna, requiring doctor's prescription. 


Now the pharmaceutical companies have been forced to create their own, better, more efficient medication to counteract medical marijauna with a competitive cost to keep up with the competition. 


Who knew what a fabulous example for open market medicine this would be? 


That's what this whole health kick reform should be called: Open Market Healthcare.


It is not be socialized medicine. It is not obomacare. 


It is not anything that has been seen or used before, because we are creating something, new based on our experiences as a country.


We can remain true to our history, our financial beliefs and construction and celebrate that within our new health care policies while providing a safety net.



 The two are not mutually exclusive. 

Who says one can only be had without the other. It's not polarized medicine.


It Could be Open Market Healthcare.

 

We can all keep what we have, but then, if we find something better, we can jump ship and enjoy the better care at a lower cost, easily, without fear that the new provider will fail to meet their contractual duties.


The way I see it is like Car Insurance. 


You have to have it, at least a minimum if you hurt someone else, but that's okay because if you're treated wrongly you can leave for an equal or better plan at any time. 


Just ask gieco? Or Prudential? Or State Farm? Or whatever other agency you can whip off in your head?



They'll happily take you. They'll waive previous offenses such as a DWI, car accident or ticket. 

Yes, you'll pay, somehow, but that price will also be kept in check by how other companies charge their offenders.

How many health insurance companies can you whip off your head? 


How many commercials do you see? 


Would Blue Cross show a comparison quote, side by side, benefit to benefit to us on a commercial, on the internet, in a closed door office meeting? 


I don't think so.

 Haven't seen any.


New Hampshire has a site comparing what each hospital charges per procedure so you can price shop, just like you do between target and walmart or Lowes and Home Depot, JcPenney and Kohl's.




See it. It's true.
 New Hampshire Health Cost. That's www.nhhealthcost.org




 I love my state.

This was highly suported by Insurance Companies.


What some people had hoped for was a site like Geico that allowed, not only price comparisons between hospitals, but insurance information as well.


How much would I pay here with this insurance vs. that insurance, kind of like comparing net vs. gross pay.


That's where the brick wall comes in. 

But I guess that's what happens when you try something new; an unexpected, often delightfil outcomes occur. 


I like the changes I've seen made so far. I understand and see the relevance to both sides.

I'm just happy were are finally having this fight, this discussion. No problem can be fixed if nobody acknowledges it exists, and both experience and evidence says healthcare is a problem. 

Our Health care is sick.






Cesamet is still so new that the. But who would you rather have the cash? The corporation or the government?










 If you had a pill that decided whether you would spend the day miserable, aching, taken a minimum of 30 min. thinking about moving before you actually did from the agony

I want to hear beforeI die, Tear this Medical Brick Wall Down!"