Medical. . .What?

With the extent of my disease, I'm going to have to meticulously control my pain,

I can never go too long between doses of different medications to ease different ailments: my acid reflux, nausea, fatigue, yada, yada, yada.

It's not as easy as a "healthy" person may think. It certainly doesn't seem like a stressful job sitting around and taking pills all day, but it is difficult to decide which ones to try when and to know how it will effect you. You wrong move could put me out of commission for a day. I don't want to miss a day I could be enjoying!

Then, my luck, one of the best long acting medications to make me comfortable, cesamet (nabilone), the medicine that stopped my nausea and vomiting while making me eat and drink and easing all my aches almost letting me "forget" my disease was inaccessible!!

I tried cesamet with huge success, but then the palliative care NP who prescribed it forgot about our trial since cesamet is a medication pretty new to the market. I was the first perscription she had written for it.

Due to this confusion  I couldn't get the script rewritten since nobody else knew this medication.

Then again with my luck, when it finally did get written, like I'd asked, it had been taken off the market due to "distributor problems." 

It took months of aches, pains and advocates to get it for me again. 

My home care nurse finally pushed. She called the distributers and pharmacies on my behalf. 

Thank you J!!  The world needs nurses, especially like her. Her dedication finally got the med back to DHMC pharmacy. I've been able to get two prescriptions and stay up all day making jokes!

 You would guess a medication that could cause such a hastle has to be new, complicated and hard to access to have to include insurance with co-pays, manufacturers, distributers and a high cost ($200+ a bottle).

Or not.

Cesamet (nabilone) is a SYNTHETIC or CHEMICAL MARIJAUNA.

  I could have gotten the fresh healthier version from some local cow field more easily. 

I think, with our country in so much debt, maybe it's time our representatives looked into some of the better business practices, like raising rates (i.e. taxes) when the profit margin allows (when they are able to tax without hurting or even helping, like with cigarettes) or utilizing their resources such as marijuana like this pharmaceutical company much like we, the U.S., did with tobacco and alcohal.

Really, I don't understand how I live in a country that made absinthe legal, but marijuana remains on prohibition. So confusing. A least now I can access easily for my pain.

Hearing "the News"

 I got off the phone quickly with Dr. G. I've just gotten the call I have had so many times before: my PET scan looks bad. The cancer has spread rapidly from my right kidney to retro-peritoneum, my mediastinum and lastly, just for kicks, in the bone @ L4 in my spine.

I have never had lymphoma metastasizes to the bone before.

That's what sent me into tearful shock. Well, not the only thing, but that was part of it.

 I managed to make an appointment for Friday to discuss "options." "Pain control" was thrown in there.

 Even after so many years, I'm still not ready to quit. I'm not ready to hear you're dying, and I'm not there yet. Quitting is not in my vocabulary. 

I said at the beginning I wanted to be able to tell x that I tried everything. 

I thought, originally, that I'd get cancer, suffer miserably, then be cured by the grace of God to restore faith to people. I'd love for my cure to be a miracle. I know I've all ready received two in my life, may be third time is a charm? 

With all the prayers said on my behalf, I've received so many graces through the years, I know the prayers asking for my cure were heard. Graces were supposed to be used asking for my health too, but a lot of times there was someone who needed them more. Then when a loved one wasn't in trouble I prayed for the cure for everyone even if I had to die. 

I said, God knew best. It didn't feel right taking all the graces when God knows the master plan, what's yet to come, and how I fit into the cycle. I guess I put myself at the hands of fate, the great scheme of the universe. 

The loss of life is a huge event. If a butterfly can change events with a flap of their wings imagine what happens with a death.

 It's not a decision I want to make ever. Luckily, I can't. I don't get a choice anyway.

 I'm lucky I've been able to give my disease to God and have faith I'd be taken care of. This is why I've been able to make decisions and never look back. 

I don't dwell on what ifs or what I should've done different, because I can't change the past. I can only move forward, quickly. I think being able to move forward without guilt or questionings has been one of my greatest assets and coping mechanisms in fighting. 

I remember the serenity prayer: God, Grant Me The Serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference. 

After I got off the phone, my whole past, my whole life, my dreams and visions for the future flashed before my eyes crashing down into a big pile of rubble. 

I have always, morbidly, thought that I wouldn't live to see 30. I have never been able to envision life beyond the big 3-0, and getting this news right before my 29th birthday is devastating.

All I could do was cry, staring into empty space and try to think. I was paralyzed by grief, by the loss of my health, possibly my life. 

Getting "the call" never gets easier. It always gets the same reaction. The dumbfounded feeling of having your whole life sucker punched in the gut knocking the wind out.

 While stunned, I still feel like I need to do something, anything. But what? I had to prepare. There were things to do: my will, ok, contingency plans? Ok. I needed a plan.

Not knowing where to go, I called my parents sobbing. My mom just had to hear my sniffles over the phone before she said "we'll be right over."

Some how I had managed to hide all this from x, who was lying on the floor happily playing. In reality, there'd only been a couple minutes since the phone call, and my crying or sobs are usually muffled and quiet.

 X was so absorbed in his video game he probably hadn't even glanced back. X knew something was up when the parents came over. I wiped my tears (again without him ever noticing my crying) and told him my cancer came back.

 He shook his head solemnly as if saying, "I understand" before asking to go play outside with Pepere. I needed time to grieve. I'd been stunned but I didn't want x to see it. 

Too bad he came in to ask mom and I to come outside to check out his skills, walking in on our hugging cryfest. He seems to slowly be adjusting to the news. I don't think he totally understands right now.

What felt best, what I needed and made me feel so comfortable and safe was that in the moment I was feeling my weakest, my saddest there was somebody I could call to hold me and grieve with me.

 Loving supportive relationships are the best "possession" in the world. 

All the fighting over land, money and oil, and who would have guessed, the best things in life are free.

 We followed x outside, who now was really registering the severity of the situation. As he was leaving on the 4-wheeler he held my hands and said in his innocent 8 year old voice, "I'm sorry you have cancer" then drove off with pepere as we walked away sniffling, the sobs coming back.

After mom and I got the tears out, I fell asleep quickly. Getting such serious news is exhausting.

I was able to tell J the results that night after he got home. I thought we were safe when suddenly I heard a shocked, panicked, "You're going to die?!"

And of course, my immediate reaction was to say, "NO! What are you talking about? Everybody dies sometime. No worries. Go back to bed."

He did go back to bed, but I know he'd registering the seriousness of this. We're going to talk more about it. I want him to know his sadness, frustration, anxiety and anger are all normal. I want him to know it's okay to cry and let it all out. He needs to talk about it. I know the right time will come up, soon.

A little rant never hurt anyone

I felt a little guilty after my rant about medical bill collectors. There still is a person in there. I don't want to hurt anybody. I just want a system that is fair and just, a health care culture where the patient is cared for holistically, understanding anything that effects the patient effects the patients health.

This battle has absolutely changed me.

Most the fight in me is now peaceful and focused on my disease, but I know the ONLY reason I can do this is because I have a wonderful loving support group that protects me from the world. It's almost a perk of getting sick young.

I don't feel my spine crawl or my hair standing on end getting upset or angry often and only over causes. I don't scream, holler, or call names much more. I never really was a scream and holler type, but name calling psychological button pushing, yes I'll admit to that. 

I've changed my focus of where that energy goes. 

Thanks for the long response, dear reader. There aren't really any truly innocent groups in the health care game. 

I know there are clinics where doctors are human pez dispensers writing controlled scripts like legal drug dealers to rake in cash. I don't think there are any clean hands in the area of health care where greed and money supercede the patients' best interest.

 The only innocent group, and it can be argued we're not, are the patients. But we patients are the ones pressing frivolous law suits for trillions against hospitals skyrocketing the rates of malpractice coverage. 

Were still the most oppressed, the group closest to being the child caught between a parent's bickering battle. 

Of course, one person never represents a group and a group doesn't represent one person. 

With all this being said, it's official, and I guess it has been for a while. 

I'm a statistic. I'm in THAT group, the ones that don't take presciptions or manipulate them to make it more cost effective. 

Yikes.

I'd really hoped to see the day that patient's no longer had to worry about these issues. Where they were safe and secure. I'm forever thankful to The Obama Administration and everybody that supported Affordable Care. That has given me a huge sense of security knowing that now my treatment won't be stopped because I reach my "debt ceiling" or "insurance maximum" and that I could continue to receive coverage cost effectively if something were to happen to my husband. 

The little that was gained has been a God send, a miracle in itself. I cry when I hear about the laws being torn apart piece by piece.

 In NH, the cigarette tax was repealed. All 10 cents a pack and 9 million plus revenue for the state was cut. The next week tobacco companies increased their prices 10 cents in NH. If the profit margin is there someone should take it. NH lost its catastrophic illness program, it's funding for many state aid programs, such as planned parenthood, all which could have been funded by that income. However, our representatives decided to have higher rates of teen smoking and lower tax revenue. Maybe they figured they'd keep bragging about no sales tax while jacking up our property tax and killing off the sick that can't pay.

Kind of got off the subject here. A little rant never hurt anyone.

Please pray for a solution

Test Results from Vic (AKA Dad)

I wasn't sure if I was ready to tell everybody my last scan results. I hadn't gotten around to telling people close to me. Thanks to dear old dad (yes, old :)), I didn't have to. He did the job so well. 


Hi To all

We have the whole family back together for the weekend. It's th dog days of summer and all the dogs are here for a visit. Roxy, Nika,Anne and Lily. A nice relaxing weekend near the pool, Just a time to reconnect. Allen is up with me at 3:00 am. He is working on his theses. He has to defend it this month for his Masters. He is now taking Graduate level classes at MIT. I could not be prouder. Now if could teach him which end of a hammer to use it would be great! Heather is a great mom to Pierce and Preston. Pierce turns 4 this month and Preston 2 shortly after. Just bought a new house in Hopkinton Mass.
Patrick and Grace are doing well. She is now working at Dartmouth Hospital. Patrick is working with me. They are building a house just above us. A young couple with good educations ready to blossom. I couldn't be happier for them.
Hillary Jon and Xander are amazing. Jon is a big guy 6'7" 300lbs. He is doing amazing aerospace engineering. He has not been able to finish his associate degree but is doing cutting edge design on the new next generation airplane fan blades. Xander is the biggest and strongest kid in the soccer league. He score a goal with 10 seconds left in the game last night to tie. He is very strong willed. Hillary of coarse always is looking continually in pain but never complains. She pushes herself. She would have made a great nurse practitioner.
Nancy is the chairman of the ADEX hygiene exam. She had a 3 hour tele conference after work this week to try to please all the states in the nation to have 1 dental Hygiene exam. Hygienists now have to take the exam again to practice in different parts of the country.

I tell you all this because I am very proud. But also I want to convince myself That God and fate has brought us to this time. We are extremely lucky to be blessed with our family. I need to believe that we have been successful and want to be accomplished in life. We have an amazing support system. We all have great friends and relatives. Sure we all have aches and pains and sometime we complain and get depressed but we always have someone to help us up. We have an amazing life. If you all look at your life, focus on the good that you have accomplished. You will see what a difference you have made in this world.

I tell you all this to try to understand why Hillary's Cancer is back stronger and more aggressive than ever. She only missed 1 chemo treatment. She wanted a summer to enjoy life, family and friends. The PET scan this week show the cancer now in her Bones as well as in a lot of the places it had been knocked out of before. We need to move quickly now as at this pace it will be back shutting off the use of the kidney soon. We have an appointment to see if she qualifies for a trial treatment at New York university on thursday. Dr G thinks she will need the stent in the kidney by then to be able to make the trip. We could see the pain in Dr G's face as he tried to tell us what the new treatment plan would be. He consults with a wide field of specialists and gets lots of advice from everyone. Hillary knows all of the staff at the cancer center on a first name basis by now. At the reception desk yesterday, Hillary walked in and all 3 receptionist greeted her by name and pulled her file before she actually got to the desk. Like I said we couldn't have a better support group. Everyone wants to help, from the janitors to the doctors.

I have a lot more thoughts but they are all spinning in my head tonight. The description of the cancer, strong and aggressive are traits of our family. Those traits have made me very proud. I feel accomplished. They have helped me successful in looking back. Strong and aggressive is not a good trait for cancer. Well now you know why I took so long in my last update. It was too good to be true. We really thought she had beaten this. We didn't want to get our hopes up too high.

I want to tell a story of a hospice nurse that we have recently met. She was the hospice nurse for my dad. My mom called up the nurse as she was mad as heck. Dad wanted to go run his bull dozer. He was lifted into the seat with the loader. He worked on the dozer for almost 4 hours. The next day he was in awful pain. Couldn't move, could hardly breathe. Mom asks the nurse to tell him that he can't do that again. The nurse asks him if was worth it. He looked at her with a twinkle in his eye and said "yes it was". 12 years later she uses this story with most of her patients. Now I know why Hillary would take a chance and skip 1 chemo so she could enjoy the summer. She is not ready to give up. She just wants to enjoy what she can in life.

Thanks for listening. I feel better now. I could not have said this in speaking. The emotions flow , my focus jumps all around, I don't make sense to myself. I think I will try to sleep. I know I will put back all the weight I lost in the last 6 weeks. When I worry I eat.

Thanks for keeping us in all your thoughts and prayers. You really are a great support team.

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

Medical Bill Collectors: Heartless Money Suckers?

What an evil heartless group of people behind medical bill collecting. 

Thank goodness I have an expert advocate or I would have died from having to encounter the scum of the earth for hours weekly fighting over whether or not I owe what I know I don't owe. 

Really, honestly, I'm not being dramatic here. 

My faith in the goodness of humanity would have been crushed by now from having to deal with them. 

The disability insurance I dealt with finally purged me. We'd been fighting over a monthly payment of $50 and whether or not I was obligated to send in X's sS benefit award letter for years. They wanted to sue me for overpayment to the tune of $25,000. I wanted to continue to get 60% of my base pay income from 2006, a horribly reduced number from lack of overtime, bonuses, and inflation.

 The one bill I've dealt with in years I cried and pulled the hospice card to get out of having it sent to collections. The kicker: Aunt B and I have been in contact with this company since I received bill number one. Even though I am contending the bill, the company continued sending overdue notices. Then at only 60 days past due, I get a certified letter sending the case to claims! The amount in dispute: $311! 

A law needs to be put in to place that if a medical bill is being contended it can not be sent to claims or be used against your credit. I was told, by a banker, that medical debt is not taken into consideration in your credit score. Or was it in securing a loan? I don't remember exactly. 

Anyway...  when I called the company about this I was met with the same story I'd been receiving: "Your insurance covers, blah, blah, they review my benefits, blah, blah, blame on co-insurance." When I remind them the date of service was Nov. 2010 so co-insurance would have been met, they get all tongue twisted.

During todays call, it was then I blurted out I was on hospice and didn't want to deal with things like this and that I didn't understand wny they wouldn't just accept $50 as payment towards the bill to take it out of claims with my voice rising, ready to cry through it all.

Then the person gets semi-human, saying they were just trying to make things as easy as possible for me.

 Of course, everyone knows sending bill collectors like savage dogs after me and sending me to court is the easiest avenue for the payee.

 When I asked if it's still going to claims she begrudgingly muttered "no" like a defeated child asked by their mother if they're ever going to do THAT again after a verbal lashing.

 They certainly don't understand they are ruining one of the last, few precious days that could be spent on earth with loved ones. When someone pictures dying peacefully at home surrounded by loved ones, they don't imagine the phones ringing off the hook with collectors trying to suck the essence away, upsetting and burdening family when the focus should be on supporting one another.

 If you manage to survive, It's tiresome to go from insurance company to care agency to hospital trying to untangle a mess. It's a part time job. It's beyond the disabled capabilities. The process beats you down worse than the illness itself. It makes you feel like you're monopolizing resources you are not entitled to. It makes me feel like i should just die instead of sucking resources. 

I don't know where the thousands of dollars taken to pay just to have insurance goes. I do know some of what it buys, I'm lucky to have any. I'm even luckier to have an advocate and husband who've been able to shield and shelter me from this inhumane practice while I fight my disease. 

It's known the uninsured have lower survival rates, but how does being underinsured effect survival rates or quality of life? If the answer was up to me I'd say being underinsured is a killer equal or greater than being uninsured and medical bill collectors are heartless money suckers.

The Waiting Game

I try not to fully wake up on PET scan days. I live awake but half asleep because I know at test time I'm taking a med that will knock me out for the next 36 hours. Why wake up at all if you're going to be knocked back into sleep oblivion? 

That's the way Tues. went. My scan was at 2pm. I couldn't eat anything past 9am. I could drink clear liquids. But being so late in the afternoon, I did wake up to enjoy the day knowing that the day would be over when the nurse handed me that xanax at 2pm.

I always think, maybe, I've gotten some cross tolerance. I think, maybe, I'll be able to stay awake after. I won't fall asleep midsentence. I won't completely forget everything that happens, including a doctor's appointment where I receive the results.

But I always do.

We've figured out I just need to go home and sleep. I can be called or have an appointment later in the week to get my results.

It only took once where I had an appointment that I don't recall to change that cycle. I was calling up my doctors office all week trying to explain to the secretary that yes I had gotten my results but I don't remember getting them or what they were.

Try explaining that one.

Usually, people remember whether they've been diagnosed with cancer or not.

So the test was on Tues. Theoretically, the results were probably available Tues.

I haven't talked to my doctor yet.

I know he works outside the Lebanon Dartmouth Clinic.

This is why I'm not freaking out that he hasn't called me with the results yet.

I used to get my results, immediately, pronto, but that was a while ago. That was when I was pushing for a cure. That was when I was trying to blow that cancer into oblivion.

Now, I don't want nasty treatment anymore. I want nice, easy treatment that kills only my cancer.

That's why I'm ok with not having my results yet, but it's making me suspicious. I'll start calling after lunch.

Heres a Dad Update

When fate hands you lemons,

you make lemonade.

-Dale Carnegie

Hi to All
I realize it had been maybe a couple of months since I last emailed. The summer is always busy and when everything is "Normal" we all tend to coast. Normal is a very good thing and we can enjoy a summer of soccer swimming and sun. I actually had not talked with Hillary about any treatment for a while. She decide to take July off from any chemo treatment and just enjoy a month. She spent 2 weeks in the white Mountains Camping with the family. Xander is 8 now and can do a lot more on his own. He is very active so Hillary doesn't stand a prayer of keeping up with that barrel of energy. Watching Xander's activity even gets me tired.

This is Hillary's first summer in 3 years that she can go swimming. No Tubes sticking out of her chest. She is allergic to the sun so she has to relegate herself to big hats, just like the English royal family. She is happy in the shade, no big deal. 

View from the beach at White Lake

She has been coaching the 7&8 yr old soccer team. That is going very well. With her and my memory it takes all year for us to memorize the kids names. Hillary has found a way to feel like she is accomplishing something. 

She is making jewelry. We are now polishing her own stones. Now we are into finding special stones as we go places. We did not realize what we have right below our feet if we look hard. It does not require a lot of energy and can be started and stopped easily. She has taken a few classes and some of the pieces are gorgeous. I can't say I am ready for ear rings yet!

Sunset From the beach.

Today she had a Doctors appointment with Dr G. He looked so young when we started this treatment. Now he has gray hair. The labs were inconclusive. Some hi some low. Today she is having another PET scan to look for any new spots starting. She does not have any individual sore spots so we are hoping for a clear scan. She has tapered off the steroids to a low level. we hope that will slow any growth of the Hodgekins Lymphoma. It also has slowed her activity and energy. She is trying some alternative medicines. Got a Chinese Doctor that mixes up a batch of something like tea. She has decided not to eat worms however!! I would have drawn the line somewhere!! I don't know if it is Wong or wight. Bad Joke--

    She does require a lot of rest and a lot of pain control. It seems like her bag of medicine has gotten smaller however. She has not needed the wheelchair in about 6 weeks. We have learned to live and survive with cancer. If you are given Lemons make lemonade! Enjoy the lemonade as it will quench your thirst, and make you pucker up for a big kiss. That is a very good alternative. 

   I hope all of you are enjoying your summertime. Keep a positive attitude. Make every moment count. Please keep Hillary in your prayers.  A special prayer for a cure for cancer would nice also.

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

-- 
Five Eagles Design, Victor St Pierre 110 Great country rd Charlestown NH 03603 603-542-4915 Office 5eagles@myfairpoint.net 5eaglesdesign.com

Z and The Cancer Meanie

After years (and I mean YEARS) in creation, it's with great excitement that I announce the upcoming publication of "Z and the Cancer Meanie," a children's tale following a family through the ups and downs of a cancer diagnosis and treatment through the eyes of young Z whose mother has been diagnosed with cancer.

With words adaptable for any person who has been diagnosed, the story answers common questions straight from the real life Z and his friends. With melodic words and vibrant illustrations, Z and the Cancer Meanie will help children of all ages understand what cancer is, diagnosis, hospitals, doctors, nurses, tests, even things as simple as a thermometer and blood pressure cuff.

To facilitate conversation, after the story there is a "fill-in-the-blank" section to help the reader or child identify what they are feeling, how to cope with those feelings, and how to find alternative solutions and/or activities that can still be enjoyed.

Z and The Cancer Meanie will help the whole family become comfortable with discussing cancer, balding, chemotherapy and more so this difficult time together may be a little less difficult.

To see some of the book yourself, get online and see www.wix.com/zandthecancermeanie/book

Z and The Cancer Meanie was written by Hillary St.Pierre, an RN and Hodgkin's patient, who discovered a lack of interesting, entertaining books on cancer while trying to educate her own son during her disease. Z and the Cancer Meaning was written to answer the questions that kept popping up.

Illustrator Chris LoParco brought the words to life like no other children's educational book has before. The family of lions and group of animal characters turn a reading of "Z and the Cancer Meanie" into a relaxing story that can be read anytime.

 You can find more of their works online. Hillary St.Pierre writes a blog www.baldiesblog.blogspot.com and for  The Huffington Post. A novel, Real Women Are Bald, is currently in the works.

Chris LoParco also has an upcoming novel. A Story Told Book can be found at www.astorytoldbook.com as well as contact information for the artist.